This Mama's Heart

Sensory Processing

2012-01-25T22:54:00.000-05:00

I've avoided talking about this because, well, I don't really want to add anything else to the list of things related to Luke and his therapy. But a month or two ago his speech therapist told me that she thinks Luke may have a sensory processing disorder. Basically it means his body hasn't matured to deal with everything sensory related.

Is it a diagnosis? No.

Does she seem pretty confident that it's another thing we're dealing with? Yes.

The day she told me, I drove home in tears. It was just one more thing to add to my list of worries for him.

She sent me home with The Out of Sync Child. I read it. Mostly. I'll admit that I did a lot of skimming. Yes, there were things that sounded like Luke. But there was also a lot that doesn't sound like him. And there was quite a bit where I said, "don't all kids do this?".

She referred us to an occupational therapist. I contacted her - but in the end, we decided to hold off. Financial, logistical and time reasons were behind our decision. More money out of pocket than we can handle right now + lonnng drive at least once a week + already full weekly schedule = too much to deal with at this moment.

Every session the speech therapist brings up sensory. She feels that it's keeping him from benefiting as much as he can from speech. He moves around a lot. He becomes startled if someone picks him up quickly. He has days where he doesn't want her touching his face to do the PROMPTs. He works on their activity for a minute or two then moves on to something else. Etc, etc.

One thing I read in the book is that we ALL have sensory issues. Everyone has one or two things they don't deal well with. For instance, I can't stand the dentist. And it's not a pain thing. It's the noises and smells that freak me out as soon as I walk into a dentist office. I don't like to wear hats or anything too restricting around my neck or wrists. If I'm sitting in a chair and someone even slightly tilts me back, I start flailing like a chicken because it scares the living daylights out of me.

So I'm on the fence. I want to do whatever we need to do to help him. But, he's only 3. I want him to have a chance to come through things on his own. I don't feel that the sensory issues affect his daily life, and so I don't feel that it's anything urgent to deal with right.this.second. We're working on them at home, using sensory activities, and I feel that it's a good start.

Be Kind

2012-01-23T20:00:00.000-05:00

Last night I stumbled across a blog post written in regard to parents who deal with food allergies. In it, the person talked about how when her older child started school, there was a child in the class who had a food allergy. This child's mom was always "hovering", watching him very closely. The blogger admitted to making fun of the other mom for this (and for being ashamed of it). But now, the blogger has a food allergic child of her own, and understands where the other mom was coming from.

Reading the blog post made me think of the quote I have posted above. I stumbled across this quote awhile back on Pinterest, and it really struck me. It is so very true. You never know why a person does what they do, but chances are there is a very good reason for it.

One of the common complaints is about moms that hover. Helicopter moms as they are often called. Mom's that are germaphobes or are terrified of their kids getting hurt.

I was never much of a hoverer with Cody. I was also never big on using hand sanitizers or that sort of thing. I wasn't one to follow him around the playground watching his every move. Then Luke came along. Between his 5 bouts of pneumonia in less than a year, and his food allergies, I became very paranoid about what he touched or put into his mouth. Have I mentioned that he puts everything in his mouth? Last summer we were driving home from a playground when Cody told me Luke had something in his mouth. I pulled over, dug in his mouth, to find that he had a few rocks stuffed into his cheeks like a hamster. He managed to do this even with me watching him as much as I could. He's a food thief. He will take cups or food that is left sitting unattended, and it immediately goes into his mouth. He also has no fear at the playground. With Cody I was lucky, he was (and still is) very cautious. He wasn't one to climb up too high or jump off the equipment. Luke will do both of those things in a heartbeat. So yes, I hover. Isn't that my job though, to know my child's personality and know what I need to do to protect him until he's old enough to understand better?

Back to the everyone has a battle quote. When I became pregnant with Cody, I also became active on various parenting message boards. Through that I have met many wonderful moms. I've also learned of several tragedies involving kids. I'd like to talk about a couple of them to go along with the quote.

One of them lost her 3 year old son to meningitis several years ago. She will never know where he picked it up at, but an innocent exposure to germs lead to her 3 year old baby losing his life.

The other one lost her 9 month old daughter this past summer to something equally as innocent. The baby was standing at the sofa, as many babies do when they're first learning how to stand and cruise the furniture. The baby lost her balance and fell backward, as many babies have done. She landed on her back, the back of her head hitting the padded and carpeted floor. Not concrete. Not even hardwood. Not the table. Padded and carpeted floor. The baby sustained a fatal injury to her brain from this fall.

I've never been in this kind of position, but it's not hard to imagine what going through something like this would do to a parent. If a mom appears to be extra cautious about germs, or their child being injured, or what they put into their mouths - cut them some slack. You never know what their story may be. They could have gone through something as tragic as losing a child. Or their child could have just been diagnosed with life threatening food allergies or immune deficiency. The mom going overboard with hand sanitizer may have a child at home fighting cancer, and the family may be doing their best to keep everyone healthy.

Mama Gets Crafty - SLR Purse Insert

2012-01-20T20:43:00.000-05:00

I got a sweet lil' SLR for my birthday this week. I'm in LOVE with it. I spent a good part of the week looking at camera bags. You know, the type that look like a purse and not an actual camera bag. I fell in love with several on the Epiphanie Bags website. I mean, who doesn't love those? But the price was way out of my range. So I started looking into tutorials for a DIY version, and found this. Except I didn't feel like dealing with the sewing machine. Or velcro. So I busted out my trusty hot glue gun, and got to work.

I used 1" foam, and wrapped the pieces in fabric like I was wrapping a present, securing it with the hot glue. The only problem is that the 1" foam is a little too bulky, and the camera + extra lens takes up most of the bag. So I either need to re-do it using 1/2" foam or get a bigger bag. I'm voting for the bigger bag =) But in all, I was pretty pleased with myself!

Top 7 Lies about Homeschooling

2012-01-17T10:08:00.000-05:00

This is a hilarious video, it goes over the top 7 lies about homeschooling!

I love how he points out that there are shy kids in public schools (I was one of them)

How he points out that if being "sheltered" means not being introduced to sex, drugs and violence in middle school, then being "sheltered" isn't so bad.

And my favorite - pointing out that a world without Lady Gaga isn't so bad =)

And finally, I'd like to add something to my reasons of "Why I Love Homeschooling".

I'm learning things that I never learned in public school. Not because I didn't pay attention, but because it was never covered. Last week we learned about knights and castles. It ended up being one of Cody's favorite unit studies from everything that we've done, and I enjoyed it greatly as well.

Can't Stop Thinking

2012-01-09T11:33:00.002-05:00

Ammaria Johnson has been on my mind a lot. She's not the first food allergy death that I've heard of since learning of Luke's own life threatening food allergies, but her death has hit me harder than any other. Maybe it's because she was so close to Cody's age. Maybe it's because she died somewhere that every child should be safe. Maybe it's because every time I read or hear that she died of cardiac arrest it makes me think back to Luke's first reaction, and how naive I was at the time that he could have easily gone into cardiac arrest. And how scared she must have been. Or maybe it's because we were going to put Luke into preschool this fall.

Ammaria's tragic death has changed our mind on Luke starting preschool.

I know some people will think we are being too protective.

Some will roll their eyes and say we can't keep him in a bubble.

And that's ok. But to those people I would say, watch your child suffer an anaphylactic reaction. Not just a few hives, but a full blown life threatening allergic reaction.

Watch them turn blue and lose consciousness. Watch their head flop around because they don't have the strength, due to lack of oxygen, to hold it up. Stand in an ER and watch a team of 6 nurses and 2 doctors fight to stabilize your baby while he is staring at you, crying, with eyes pleading with you to help, while you know there's nothing you can do. Whisper to him, promising to never leave him. I can tell you that it's haunting, and something that you would never be able to get out of your mind.

Then imagine your baby having a reaction, away from you, because someone who didn't know better failed your child. Failed to protect them, failed to realize until it was too late how serious the situation is. Know that what happened to Ammaria could happen to your sweet child. All it takes is one slipup.

That is where my decision is coming from. I refuse to put Luke in that situation, hoping that the school has their act together as well as it appears they do. Yes, Ammaria's mom should have left an EpiPen with the school. But based on the fact that the school called the mom before 911 tells me they didn't know how serious the situation was. If the school isn't educated on WHEN an Epi is needed, it doesn't really matter if one is available.

His life isn't worth that risk.

I know that not everyone is able to keep their food allergy kids home, that homeschooling isn't an option for most people. I also think telling parents of kids with severe food allergies to just homeschool is wrong. But for us, at least at this point in our lives, it is an option. And it's an option that I'm more than happy to take advantage of.

So sometime between now and September I will begin formally teaching preschool to Luke. It will probably be closer to September, but I'm looking forward to it.

Heavy Heart - Food Allergy Death

2012-01-04T22:55:00.000-05:00

On Monday in Chesterfield, VA, a 7 year old girl named Ammaria Johnson died of cardiac arrest due to a peanut allergy reaction.

Seven years old.

I can't even begin to imagine.

Schools need to take food allergies seriously.

Schools need to be prepared to deal with allergic reactions.

School employees, administrators and nurses need to be trained on how to detect a serious reaction, and how to properly handle them.

Children need to have ready access to their medication.

I understand that schools don't want seven year old children walking around with epi-pens. But, the epi-pens need to be with them at all times. Perhaps a medical kit that goes everywhere with the child, and is controlled by whichever adult the child is with at the time. Lifesaving medication should not be stored in an office, locker or anywhere else away from the child. When a severe reaction happens, there's no way of knowing how much time you have to stop it. It could just be seconds. Taking 1, 2 or 5 minutes to retrieve an epi-pen is unacceptable.

Benadryl and other antihistamines will NOT stop an anaphylactic reaction. It will NOT save someone's life. It could possibly mask anaphylactic symptoms and cause you to believe that the reaction isn't as severe as it really is, resulting in wasting precious time.

As parents, we must make sure that schools have all medications that our children need. According to the video, the mom was told by the school nurse that they had all the medication they needed for her child, and refused to take the epipen, albuterol, etc, that the mother brought in to keep stored for Ammaria.

I am not pointing a finger at the mother, but please learn from this mistake. If the school refuses your child's medication, ask to speak to their supervisor. Do not let your child be anywhere without their prescribed medication.

The school is claiming that she "got into" peanuts while outside the school, on the school grounds.

This is why peanuts should not be allowed on school property. To the people who whine and complain that their child has the right to eat a peanut butter sandwich. That their child will whither away if they don't get to eat something laden with peanuts during the day. This story is a wakeup call. A seven year old child died from accidental exposure to a peanut product. Is it worth it? Is it worth risking a child's life? Which right is more important? The right to peanut butter sandwiches, or the right to live?

The Progress Continues

2011-12-26T23:29:00.001-05:00

Over the last week or so, Luke has surprised us with some new words. These came about completely on his own!

Oh my!

Nice!

Luke (it doesn't come out as Luke, but it's a start!)

Pop Up (he got the Pop Up Pirate game for Christmas - it's something they use in his speech therapy)

**Wanted to add that he is also saying bye bye. It's huge that he's putting two /b/ words together like that :)
He's also doing a LOT of imitating. Cody will tell him to say something, and he'll say it. He imitates what he hears around him. He says "TinTin" as soon as the commercial for the movie comes on. He continues to amaze and excite us!

Christmas 2011

2011-12-26T22:40:00.000-05:00

Another wonderful Christmas for our family! Cody was up bright and early ready to open presents. Luke, my little man who loves his sleep, wasn't quite so ready. Cody and I managed to talk him into getting up early, but it was obvious through the morning that he was still half asleep =) It took awhile for him to get into the excitement of opening presents!

Nerf Vortex Nitron from Santa!

He gets this from his daddy

Yoohoo, Luke! Are you awake or what?

Much better! My handsome little dude! (mama made bowtie, so easy to make!)

Remember I said he got it from his daddy? Exhibit A....

Wearing his UVA-esque tie

Peek a boo!

Quit taking our picture mom! (yes, that's Luke's shoe)

Nintendo 3DS from Santa at Nana and Papa's house

I hope everyone had a wonderful Christmas!

Special Needs

2011-12-23T22:36:00.000-05:00

The Child, yet unborn, spoke with the Father,
"Lord, how will I survive in the world?
I will not be like other children, My
walk may be slower, my speech hard
to understand, I may look different
... What is to become of me?"
The lord replied to the child,
"My precious one, have no fear, I will
give you exceptional Parents, they
will love you because you are special,
not in spite of it. Though your path
through life will be difficult, your
reward will be greater, you have been
blessed with a special ability to love,
and those whose lives you touch will
be blessed because you are special!

In!

2011-12-20T23:14:00.000-05:00

In. It's a short word. A word that most of us would not have any issue saying at all. Go ahead, try it. In. Say it slowly and notice the motions that your mouth and tongue go through to say the word. You start with a slightly open mouth with your lips retracted. You end with the tip of your tongue behind your top teeth. For most of us, this is something that is done seemingly without much thought. We open our mouths, and out it comes. For a kid with Apraxia though, it's not that easy. There is a lot of motor planning involved whenever we speak, even for a simple word like "in".

Today Luke said in for the first time. Even more exciting than that? He said it to boss Cody into doing what he wanted him to do =) Luke is taking more and more risks when it comes to speaking. He's becoming more willing to communicate with us through speech, even if it means we might not always understand him. When we met with the developmental pediatrician in August, one of the things he asked me was what percentage of Luke's speech do I understand. I felt uncomfortable answering that question, as at the time, I understood a high percentage of what he said. But I felt that was deceiving, because Luke just didn't say much. Sure, I understood a good 90% or more of what he said, but he said so little. My feeling is that he knew he couldn't get the words out correctly, and so instead of trying to communicate with us and fail, he chose to just not say anything that he wasn't confident about.

Now, Luke is constantly trying new words. There are many times where I don't have a clue what he's saying, but I do my best to not let it make him feel bad. I ask him to show me what he's talking about a lot. Or I'll play it off as well as I can. The last thing I want to do is hurt his confidence in talking, so I do what I can to either understand him, or ease the situation of not understanding him.

Tonight I watched him try to say Rosco (our dog's name). He sat on the floor next to Rosco, patted his head, and said "hi....". It didn't come out sounding anything like Rosco. And as I watched Luke talking, it was obvious that he was doing a lot of groping and struggling to find the right sounds. But he tried, and I was so proud of him for that.

Allergist Visit - Mystery of the Egg

2011-12-15T17:47:00.000-05:00

Today Luke had a follow up visit with his wonderful allergist. Seriously, I adore her. The appointment was uneventful. Basically a "how are things going" kind of visit. Which was a bit much considering we now have to drive an hour to their office, but oh well!

We discussed his egg challenge some more. She's still scratching her head over how he was able to eat a scrambled egg, but then a month later had serious reactions to eating baked in egg 3 different times. She explained that 70% of kids with an egg allergy can eat baked in egg, because when egg is baked long enough (at least 15 minutes at 350 degrees or higher), the protein is altered. And for 70% of kids, that alteration is enough to prevent an allergic reaction. The other 30% of kids with an egg allergy can't eat eggs at all without a reaction. Luke fell into that category. But, there's virtually no way that a person can be allergic to baked in egg, and not to scrambled egg. So for him to eat the scrambled egg without a reaction was a bit odd. The only thing I can come up with, though I didn't discuss it with her, is that because he went so long without being exposed to egg, maybe his body was confused and didn't react to the scrambled egg. He did have some redness around his mouth where the egg touched during the challenge, though she wasn't concerned about it at the time.

We also discussed his blood test results. His numbers have always been low when you consider the charts go over 100. His numbers for peanuts were always around 2.76ish, give or take depending on which test you're looking at. His egg numbers were always in the area of 1.xx. Even when he had his anaphylactic reactions to egg and peanut, the blood test following was very low. The blood test that was done in the summer showed NEGATIVE for peanut, and very low for egg. Which would normally tell you that his allergy to both was gone. But, the food challenges showed that they're not.

Normally the doctor would do a repeat blood test a year from his last one (August), and base any future food challenges on the results. She feels that at this point though we can't rely on his blood test results. We'll still do the blood test, to make sure his numbers haven't gone up, but the main focus will be on skin tests since they appear to be more accurate for him. And then of course, depending on the results of a skin test, we would possibly move on to doing another food challenge.

Proud Moment - Tolerance

2011-12-15T17:26:00.001-05:00

I'm pretty much always proud of my boys. They are {usually} as well behaved as you can expect boys their age to be. They are {usually} courteous, polite and just generally decent kids. Sometimes though something happens that makes me feel even more proud than usual.

I usually leave Cody at home with my husband when I take Luke to speech on Mondays and Wednesdays. It gives Cody a chance to have alone time with his dad. Every once in awhile though he will ask to come with us.

Last week he came along, and while we were in the waiting room during Luke's session, Cody pulled out a toy train track set and started putting it together. After awhile, a little boy came into the waiting room following his speech therapy, and while his mom talked with the therapist, the boy started playing with the train track.

Watching Cody with the little boy made me so proud. The little boy is a year younger than Cody, but his speech is very hard to understand. He also has other health issues that cause him to not always act as a typical four year old would. Cody was very patient with him, did not become frustrated when the boy took the toys from him, and when the boy spoke to him, Cody took the time to listen and try to understand, and answered him.

I see similar actions a lot between Cody and Luke. Cody is unbelievably patient with Luke. I call him a little daddy sometimes, because he is always so aware of Luke, making sure Luke is ok, worrying about Luke when he gets hurt, and just generally being an awesome big brother.

As someone that was teased a lot in school, one of my goals before I even became a mom was to raise children that are tolerant of other people and their differences. I never wanted my children to be the ones to tease others for being different. I wanted my kids to be the ones that were able to look past those differences and see the person for who they were - a person just like them. Seeing Cody with the little boy made me realize that he's well on his way.

I'm linking up to The MOB Society's Let's Hear it for the Boys.

Christmas Crafts and Speech Update

2011-12-09T19:46:00.002-05:00

Thought I'd share a couple crafts that the boys and I did today =)

The Snowman Cookie activity page came from Ami at Walking by the Way. Cody had a good time giving all the snowpeople big ears. Luke used them to experiment with different marker colors, telling me the ones he could say. "Geen" is a favorite!

I got the idea for the handprint activity from Pinterest. Neither boy was too thrilled with sticking his hand in the paint, and Luke looked at me like I had lost my mind, but it was pretty quick and painless.

For speech, Luke continues to make slow but steady progress. His therapist has made comments to me that she hopes Ryan and I aren't disappointed that he's not progressing more quickly. I assured her that we are thrilled with his progress, and know that he's in good hands and is going in the right direction. Luke has mastered up. He's getting pretty good with me, but continues to grope some when saying it. Same thing with bye. Sometimes he can say either of those two words without any problem at all. Most of the time though, I have to work with him, using prompts, to get a better approximation. This week he learned ho ho ho, which was good timing, as he and Cody met with Santa on Thursday. Some other words that he has been working on are eat, on me, mop, pop, baa (as in sheep sound, to help improve bye).

Luke can say hi perfectly now. It melts my heart every.single.time that I hear it. He'll walk up to me out of the blue and say hi mama, and it's the best thing ever. Such a simple thing, but when you have a child diagnosed with something like Apraxia, you can't help but fear that you will never hear those sweet and simple phrases from them.

Luke got an iPad for his birthday from his nana and papa, and I'm still working on picking out apps for it. It has the same kiddo ones that were on the iPod touch, and I added SpeechStickers (which we love so far), but I still want to pick out a main speech app that is specifically for Apraxia. I'm taking a little time to choose, because they're pricey and I don't want to regret my choice. Did you know there are apps that cost well over $100? I didn't until recently. Makes the $3.99 apps not sound so bad!

Crafting For Good

2011-11-22T20:21:00.002-05:00

Almost a year ago, through The TomKat Studio, I stumbled across the story of a sweet little girl named Kate McRae who was battling cancer. As a human, stories of anyone going through a difficult time are hard for me to read about. As a mom, reading about a child going through something such as cancer is unbearable.

I have followed her story since. Praying daily for her, rejoicing when they have received good news, crying when the news wasn't so great. I have mostly followed through their Caring Bridge journal. Recently Kate's mom posted about Kate's Crazy Cool Christmas.

Through Kate's Crazy Cool Christmas we will be adopting families that are battling pediatric cancer, and a few who are battling it's aftermath after the death of their child this year. Please consider joining us in this. You can give in a few ways....

1. by donating any assortment of new toys, movies, or games for the families. Everything must be new.

2. by donating gift cards to grocery stores, gas stations, and various stores for the families (ie. Walmart, Target, Starbucks, Visa, Clothing Stores, or Sporting Goods stores, Barnes and Noble, Amazon and various Restaurants). We need lots of these to provide for all of the families.

3. by following the link to Sign Up Genius to sign up to donate a very specific item for a family. MANY more items will be added in the coming days and weeks.
www.SignUpGenius.com/go/requested1/238

Cody and I decided to pick a few items off of the wishlist, to send to the kids and families participating. One of the items we chose was a book, and when I saw this Monster Page Corner Bookmark on Pinterest I knew I had to make one to go with it.

And voila! The googly eyes were Cody's idea! I'm hoping it will bring a smile =)

Toy Story Birthday Party - Peanut and Egg Free!

2011-11-15T23:23:00.000-05:00

This past weekend we celebrated Luke's birthday with our extended family.

We chose a Toy Story theme for Luke because he's pretty much obsessed with it!

I admit, I probably go a bit overboard with indulging his interest in Toy Story, but what can I say? It makes him talk! Of the words that he has, many involve the Toy Story characters. "Wewe" for Woody. "Rek" for Rex. Yee-haw was one of his first phrases. A stuffed Rex and Alien live in his crib, they keep him company every night. He loves his Toy Story peeps!

My original plan was to use pictures taken by a pro photographer to have invitations made, most likely by a seller at etsy. But, the photographer took longer than I expected to get the pictures back to me, I waited until the last minute, and I ran out of time. I ended up using Picnik, and my own picture, to make the invitations myself. I was pretty happy with them considering it was the first time I'd ever done anything like that.

I went with cupcakes for Luke's party, using liners in green and blue. I originally planned to use this recipe, Ultimate Chocolate Cupcakes with Ganache Filling. I made them this summer and they're amazing. That was back when we thought eggs were ok though, so I had to either make the recipe egg free, or use something else. I ended up using Food Allergy Mama's Classic Chocolate Cupcakes instead for the base, and the ganache recipe from the original one. It worked out very well.

I made Luke's birthday shirt! Well, ok, I bought the tshirt but I added the applique :) I used the On the Go Children at Play collection in Navy, which I found at ...Etsy

Printed a huge 3 on card stock, and used it as a pattern for the shirt. A little Heat n' Bond lite to attach, sewed all around, and voila!

On the egg/peanut free menu...

Ham and Cheese Sliders (without the mayo)

Zesty Sausage Cheese Balls

Buffalo Chicken Bites (I didn't care for these, but I'm not a big blue cheese fan either. Other people seemed to love them)

Simple Pasta Salad

Happy Birthday Luke

2011-11-15T22:42:00.000-05:00

Three years ago today...

I went from this....

....to this....(meeting for the first time)

Three years ago today I finally got to meet my second son, Luke. For this child I prayed...: 1 Samuel 1:27

Three years ago today, Cody became a big brother. "Sometimes being a brother is even better than being a superhero." Marc Brown

They haven't always been the easiest three years. Luke has had to deal with more things than most adults.


Luke was born with positional clubfeet.


And spent many months in either full leg casts or corrective shoes

First Christmas, 5 Weeks Old

First Easter, 4 Months Old

One Year

Luke endured an anaphylactic reaction to peanuts, and an overnight stay in the hospital, at 15 months old


Between November 2009 and October 2010 Luke had pneumonia 5 times.

Food allergies. Immune deficiency. Anaphylactic reactions. Apraxia.


But nothing can stop him from smiling, Luke at two years old.

Luke is a rockstar. He's one tough little man.

He is my hero.

I thank God every day that I was lucky enough to become his mama.

Happy Birthday Luke. You make me so proud.

Apraxia - Insurance Coverage

2011-11-08T21:37:00.000-05:00

Our insurance company brought me to tears this morning....but for a good reason! I logged on to check our list of claims, and learned that they covered 80% of Luke's September session with his PROMPT therapist! So we have 90 sessions per calendar year at 80% covered. They even covered a small portion of the claim I sent in for the developmental pediatrician. That bill was $570, and they're reimbursing us for $100. Not a lot, but I'll take it!

Tomorrow I'm calling Child Find and withdrawing Luke from the program. I was going to no matter what, but knowing that we can take him to PROMPT twice a week, and have the majority of it covered, sealed our decision.

Public Service - Watch for Third Party Billers

2011-11-07T00:13:00.000-05:00

**CALL YOUR PHONE COMPANY RIGHT NOW AND REQUEST A "THIRD PARTY BILLER" BLOCK BE PUT ON YOUR ACCOUNT**

I'm so mad, I'm almost in tears.

I noticed tonight that our current phone bill is higher than normal. We do paperless billing, so I logged in to see what the issue was.

I almost didn't notice, but finally did...there were two $13 charges from the same company. There's a blurb from Verizon stating that not paying those charges won't result in the phone being cut off. I googled the company name (I'd never heard of it), and found many results for them. It's a scam, called "cramming". They get your info, and bill you through your phone company as a 3rd party. It's typically smaller charges that most people don't notice, at least not for awhile. Ours is ILD Teleservices, INC, on behalf of Compufix, INC.

Results for this scam go back to at least 2008. People don't get their money back. I spoke with a woman named Karen Marks (at least that's what she told me) with Compufix, who said the account was canceled and "every cent" will be refunded. I'm not holding my breath. I called Verizon and requested a 3rd party biller block be put on our account. Verizon, other than issuing the block, was less than helpful. I'm trying to figure out where these companies are located, so I can file a complaint with that state's State Attorney General, but it seems that they move around a lot, so I'll just file with Virginia's AG.

I'm so MAD. How can people be so horrible? Targeting people who are just trying to survive. People who are struggling to get by as it is. Senior citizens, families living on 1 incomes, people dealing with high medical costs. There's a special kind of hell for people that are that heartless. They've gotten at least $100 from us since May. I need to dig out my previous paper phone bills to see if it went beyond that. That's at least $100 that could have gone towards us taking care of our children. How dare someone swoop in and steal it?

Field Trip #3 - National Museum of the Marine Corps

2011-11-06T10:29:00.000-05:00

There are things that I complain about when it comes to living in Northern Virginia. The traffic. Rude people. The traffic. But there are also many things that I love. My favorite thing? The history of this area, and the museum and opportunities that come with it.

Yesterday we took an unplanned field trip to the National Museum of the Marine Corps, located just outside of Marine Corps Base Quantico.

I have a huge soft spot in my heart for the Marine Corps. My husband spent four years as an active duty Marine, stationed at Camp Pendleton. The best two years of my time as a federal employee were spent at Quantico, working for the Assault Ampbibious Vehicle command as a lowly GS-4. Working with, and just being around, Marines is an amazing experience. No where else will you find a more dedicated (and fun) group of men and women.

The National Museum of the Marine Corps most definitely reflects that. We live very close to the museum, and this was our third time visiting. The first time Cody was less than a year old, and the museum had just opened. The second time, Cody had just turned 4, and Luke was just over a year old.

One of my favorite aspects of the museum is that they change the displays. Obviously there was some time between our visits, so I can't say for sure how often it changes, but I would say that going once a year would give you the chance to see different displays.

Walking into the museum, which is free (donations accepted), you are greeted by a large room with airplanes suspended from the ceiling, and various large fighting vehicles set up in a semi-circle around the room. This week happens to be the 236th birthday of the Marine Corps, so the room was missing a couple of their normal displays. They seemed to be setting up for the ceremony (the birthday is Thursday, November 10th, and the museum will be holding a traditional cake cutting ceremony to celebrate. I'm taking the boys!), so I'm assuming the displays were gone because of that.

From there, you go into the Galley, which holds the bulk of the museum. Each section is grouped by year, in chronological order from the beginning in 1775, to the current day's fight against terrorism. You can choose to go into all sections, or bypass one if you like. Another of the beauties of the museum - you're not trapped in a maze once you go in. If for some reason you need to go back to the entrance (say, a child needs a bathroom break), it takes only a couple minutes to get back to your starting point.

What is so special about the displays is that they include life like human figures. Actual Marines were used to create the figures. So when you see a wax figure of a Marine, you know it was an actual Marine that was used as the mold.

Throughout the museum there are various film stations, one included actual footage of the landing on Iwo Jima, which was rather moving.

There was a room, cooled drastically from the rest of the museum, set up as the Frozen Chozin, during the Korean War. Another room set up to depict what it was like walking off of a helicopter (you walk through an actual helicopter, down a ramp) into Vietnam. Hot and humid is the way I'd describe that room.

There are lots of guns and other forms of weapons on display. Tanks, AAVs (amphibious vehicle, my former employee!), cannons, Jeeps. Pretty much anything and everything that you can think of.

One warning, the scenes with the wax figures are accurate for the fighting that they did. There are several showing a scene where someone has been shot or other injuries, another where two men are engaged in hand to hand combat using a pistol and knife. However, they are not gory, and I think it would be easy to pass these or give a simple explanation to a child. We had no issues going through those displays with our almost 6 year old. He was way more interested in everything else. Some parts of the museum, such as the helicopter landing scene, are fairly loud. Not ear splitting by any means, but there are sounds of cannons and guns being fired, people talking. Again, we had no issues with either the almost 6 or almost 3 year old being bothered by the noise level.

The museum also includes a gift shop, and a 2nd story with two restaurants (one a sit down, called Tun Tavern, another a cafeteria/mess hall).

While visiting the museum, you're sure to run into many Marines. Past and present. Some current Marines that were injured in Iraq or Afganistan. Be sure to give them a smile, a thank you, even a hand shake. They all deserve it. There is a true brotherhood felt within the Marine Corps community, even to people like my husband and I that aren't currently directly involved. There are no former or ex-Marines. I can spot a Marine from a mile away, and it was obvious yesterday that the other Marines knew that my husband was one of them.

Finally, when you're done, there is an amazing playground for the kids just outside of the museum. As you exit, walk along the far left hand side of the parking lot, and you'll come to it. It's in the trees, so it's not completely visible unless you're looking for it. They have a good size playground for both the little kids, and the bigger kids, plus picnic tables and a fitness trail.

As I said, the Marine Corps is a very dedicated bunch, and the Marine Corps Museum, as well as the playground and grounds that they stand on, truly reflect that.

Outside the Museum

They had several time period cutouts that the kids could pose with


One of several in the Museum

This display is a simulation of waiting to board a bus to be shipped off to boot camp

Climbing the rock wall at the playground outside of the Museum

Field Trip #2 - Heaven Scent Farm

2011-10-30T09:23:00.000-04:00

This field trip to Heaven Scent Farm did not go as I had expected.

I'll start with the description for the class that we attended...

Wild and Wooly! Goats and Sheep Friday, October 28th
"Gentle as a lamb," "the black sheep of the family" and "what's got your goat?"
are familiar expressions. This farm visit teaches participants about the many
breeds of sheep and goats, what's involved in caring for them, and the variety
of products that come from sheep and goats. This is a fun and unique program
where participants get to spend time with our small flock, as well as visit with
our other barnyard buddies. Open to all grade levels.

We went on this trip with our homeschool group again, it was $7 per child, 3 and under, as well as parents, were free.

Getting there was fairly easy for us. The farm is a residence, so parking was limited to their driveway (though it's a good size driveway). According to the woman running the program, it was the largest group they've ever had, so the parking was pretty crammed.

After checking in, the kids had the chance to play on a swingset/playhouse, which Cody loved. We were then taken into a room, where everyone was seated and the program began.

I'll say now that talk about God and the Bible does not bother me. I'm not one that thinks it shouldn't be discussed, and we're opening to learning. In fact, Cody normally goes to a local church for Bible class every Friday, and missed Bible class for this program.

I do believe that there's a time and a place for everything though, and this wasn't it.

The woman running the program proceeded to talk about God, the Bible, sacrificing lambs and sheep, among other Biblical things, for the next hour and 10 minutes.

HOUR AND 10 MINUTES.

With a roomful of young children, ranging in age from approximately 2-15, the majority of which fell toward the lower end of the age range.

At times she became irritated with the young children that couldn't sit still and be quiet through the talk.

By the 45 minute mark I couldn't sit still. It was uncomfortable sitting on hay bales for that long, and we were all there expecting to learn about lambs and sheep. I don't think anyone expected to be sitting for that long.

There was a lot mentioned that I don't think was suitable for the age level there. Slaughter, sacrifice, blood flowing, graphic description of Jesus' death, and a story about a grandmother that burned her hand with a knitting knitting needle that had been put in a fire because her grandson wouldn't stop stealing are just examples of what was said.

At some point she did discuss sheep's wool, and how it can be turned into yarn, and how it's fire retardant. That was pretty much the extent of the sheep talk.

The goat talk was limited to her talking about how they raise goats for slaughter, and how expensive it is, but we could purchase some if we wanted. No pressure of course (this was mentioned several times).

One mom asked questions about how lambs and sheep are raised. If she hadn't asked those questions, I don't think they would have been addressed.

We were finally taken outside to the barn, after a few snippy remarks from the owner about how the kids couldn't sit still. The outside portion of the day included the kids having a chance to milk a goat, and then pet several animals (goats, sheep, chickens, a horse and a pot-bellied pig).

At this point I was anxious to leave, and once Cody had a chance with each kind of animal, I talked him into hitting the road. My goal was to get out of the driveway before everyone tried to leave at once.

So, no, I wouldn't go back here. I was extremely disappointed in how much of the lecture was spent on religion, considering that wasn't mentioned in the description at all. And to be honest, if you're having a program that includes small children, any kind of lecture probably wouldn't go over too well. The kids were excited to learn about lambs and sheep. Several times kids asked her when they were going to get to see them. I have a feeling there were quite a few kids that were disappointed over how little was spent talk about and seeing the animals.

Field Trip #1 - Planetarium

2011-10-30T08:51:00.000-04:00

One of the things that appealed to me the most about homeschooling was to be able to take Cody on field trips. We live in Northern Virginia, which of course means that we're surrounded by history and lots of field trip opportunities. Cody is still a bit young for some of the things that I want to take him to, but I'm hoping that our path will continue to lead us to homeschooling, and I can take him to see these things in the future.

Our very first field trip was with our homeschool group to Hylton High School Planetarium.

Growing up I went to a planetarium once, in 3rd grade. This is sad considering that the highschool I graduated from had their own planetarium!

Cody and I both loved the program! It was targeted toward the K-3 crowd, so there wasn't a ton of information about the constellations, but it was a nice introduction to it. The teacher, Mr. Kilgore, was great with the kids and fun to listen to. They learned how to find the Big Dipper and the North Star, and then learned the story of Perseus and Andromeda. Following that part of the program, they showed part of a laser show, and a preview of their Fright Light program that they show every Friday night in October.

Hylton's Planetarium is the most technilogically advanced planetarium within a 600 mile radius of us!

The Friday night shows are open to the public, and the themes change seasonally. I am looking forward to taking Cody to one of these. Tickets are $10 per person, all ages, and the planetarium seats 65 people. A schedule and more information can be found here.

Child Find - A Rant

2011-10-27T21:25:00.000-04:00

I have a problem.

For the last couple weeks I haven't gotten to bed before 2am.

Once the kiddos go to bed, it's my time to hop on the computer and do my work. I look for stuff to do with Cody for homeschool. I read message boards and facebook groups that deal with Apraxia. I read blogs that cover speech and occupational therapy for kids, looking for ideas that I can use to help Luke. I spend just a little too much time looking for ideas (and cute stuff) on Pinterest. I get sucked into reading one thing after another, and the next thing I know, it's waaaaay past my bedtime. It's made mornings not so fun around here, that's for sure.

So where does the ranting come in? Last night I clicked on Wrights Law and got on the subject of IEPs. Individualized Education Plan. Individualized being the key word there. Luke's IEP is lacking that beginning word, and it's really pissing me off.

The more I read about what should be included in the IEP/IEP process, the more I realized how little they did to help us. His IEP doesn't even list who will be giving his "speech therapy". I can tell you who - someone who isn't a speech therapist. He was instead assigned to a resource teacher. Luke wasn't even evaluated by Child Find. They sent another resource teacher to my home (who I thought was a speech therapist until a couple weeks later when I found out otherwise), to observe him. This observation went on for about 20 minutes. I had to bring up the fact that he was receiving occupational therapy from Early Intervention for his thumb. She made note of that, saying she didn't notice any problems with his thumb. So he's not receiving any help for that. My issue there is that he does sometimes use his thumb as he should....but most of the time he doesn't. She just didn't happen to see the problem during the few minutes that she watched for the issue. And of course, as someone who isn't an occupational therapist, I don't feel she had the qualifications to make that decision.

Luke spent six months in Early Intervention for speech therapy (and OT). In that six months he made zero progress. It wasn't because his SLP sucked, because she didn't. The problem was that kids with Apraxia don't respond to typical speech therapy like a child with a developmental delay would. In EI's defense, we didn't get the Apraxia diagnosis until right before he transitioned out of the program. So to them they were treating a developmental delay, and were doing what was appropriate for that.

When we met with Child Find for Luke's IEP I gave them a copy of the 5 page evaluation that his current private SLP wrote. The IEP meeting was the day before the appointment with the developmental pediatrician (I should have canceled the IEP meeting until after the appointment with the ped, but we were given an appointment with the ped at the last minute when they had a cancellation, so I didn't feel "right" canceling the IEP meeting with such short notice) so I didn't have anything yet from the doctor. But when I mentioned that the appointment was for the next day, and that the private SLP said possible Apraxia, the woman leading the meeting (who happened to be the same woman that came to our house to observe Luke) said that every child entering their program receives the same thing, whether they have Down Syndrome or Apraxia. Does that make sense? Doesn't to me. Apples to oranges.

At the time, we were happy that they gave us 60 minutes a week in our home. I wasn't happy with him getting a resource teacher instead of a speech therapist, but we went with it. I have major regrets for not fighting it then. We didn't realize how much knowledge is required when you go into one of those meetings as a parent. I thought we were prepared, we obviously weren't. It makes me mad though that they put the parents in that position. They are professionals working in their chosen field. They are the ones that made the choice to work with students that need extra help. They are paid to do that profession. And I feel that at least the people we have been dealing with are not following through on that as they should. Parents should not have to cram a legal education in to be sure that their children are receiving what they are entitled to under the law. These people should WANT to do what's right for the child.

The "help" that Luke is receiving from the resource teacher basically entails her sitting at the kitchen table with him for a few minutes, showing him picture cards and occasionally using the iPad with him. Then we move on to his bedroom where the three of us sit on the floor, Luke plays with toys, I interact with him, and she takes notes. It's weird, and it's not helping him. If something like "Luke, say ____" would work, he would be talking by now. If doing a puzzle with him would work, he would be talking by now. I do all of those things with him.

The thing with Apraxia is that someone who has it can't get the words out. It doesn't matter how much you encourage them, prod them, offer them incentives, etc. The motor skills aren't there. It's similar to someone that has had a stroke. It's just not possible, and they need therapy to fix the oral motor skills. Telling a child to say a word over and over won't work. You have to show them how to say it. You have to remind them of how to work their mouth, jaw and tongue to get the word out correctly even after they've learned the word. She noticed that Luke was PROMPTing himself for a few words. I wanted to yell at her, that's what he needs!

Part of my problem is that when I get mad, I can't talk. I literally clam up and just sit there staring at the person while I'm fuming inside. I think it's because I know I'm overly emotional, and if I opened my mouth to say something, I'd probably say multiple things that I would regret saying. Today she started making strange comments while watching him play. She commented that he likes to watch the lights flash on one of his toys. That he shrieks. That he doesn't stick to one thing for very long. She asked me how his tantrums were doing. From the lights comment, I knew where she was going and it just made me more and more mad. Finally at the end, she asked me if I wanted him tested by the school. I asked her what for - her response was "oh, you know...everything". Um, no. I'm not letting him be tested by them, especially if I can't get an answer on what the testing is for. After awhile I flat out told her that he has been evaluated by two different developmental pediatricians, and both said he shows no signs of autism or asperger's. She didn't have much to say to that, but went on talking about his behaviors.

Luke isn't even three yet, and that alone makes him prone to tantrums. Luke is an intelligent boy who knows what he wants to say, but can't get it out. So yes, he has tantrums when he wants someone to understand him, but they can't. Wouldn't you? Imagine not being able to tell someone what you want to eat, drink, play with, when something hurts or you need something, or when there's a show you want to watch or a book that you want to read. Imagine the words and sentences forming perfectly in your mind, but when you open your mouth, it doesn't come out right. At Luke's age he has no other way to communicate (though we are working on sign language, and we're saving our pennies for an iPad for him). Then image how frustrated you would feel. Then have someone try to turn that justified frustration/tantrum into something like autism when you have no other solid symptoms of it. I was so angry by the time she left here.

I've read many cases where Apraxic children are misdiagnosed with other things, Autism being a big one. Apraxic children that are misdiagnosed and put into a classroom with children who have disorders and handicaps much worse than their own. Nothing against the other children who do have those disorders, but it's not fair to the Apraxic child to be put into an atmosphere that isn't warranted by their particular disorder.

I'm closing with an article about a young man that was featured on the Apraxia-KIDS website a couple months ago. His name is Luke as well, and he's an 18 year old triathlete from Australia. He has Apraxia, and his story was told through the website.

Triathlete Luke Farrell Takes on World and Speech Dyspraxia

Preparing for Halloween 2011

2011-10-24T23:43:00.000-04:00

I stumbled across a new (to me) blog today, Food Allergy Feast.

There are several entries about dealing with food allergies on Halloween, lots of great information.

It, of course, got me thinking about how we're going to handle Halloween this year. This time last year, we were about 7 months into being a food allergy family. We were getting to the point where we felt like we could handle things and keep Luke safe from his allergens. I think also that Luke's age made me a little less nervous. He wasn't quite 2 yet, and he was a bit easier to keep an eye on. As it ended up, Luke didn't make it to trick-or-treating. He went full force all day, and fell asleep right before we took Cody out to beg for candy.

This year though, I have a feeling things will be different. Luke will be 3 soon. Luke is a little wild man, hard to control and afraid of nothing. He's also going through a pesky "I don't listen to nobody!" phase. And did I mention that my husband has to work Halloween night? So it'll just be me in charge of making sure Luke doesn't dig a fun size Snickers bar out of his Halloween tote and shove it in his mouth in the dark, where I can't see what he's doing. Super.

The game plan: We're taking the boys trick-or-treating in a small historical local town on Saturday afternoon. They'll get to dress up, get some candy, and have fun with other kiddos. The best part? It'll be daylight, and my extra set of eyes and hands (husband) will be there. I'm envisoning a candy bucket for him where you can drop candy in, but can't get it out (kidding...maybe?). I'll bring my own stash of safe treats for him, so he doesn't feel like he's missing out on anything.

Halloween night I'll still take Cody out, but will do my best to wear Luke out enough that he falls asleep before begging time rolls around, and can crash on nana and papa's couch again this year while we go out.

I had such high hopes that he would pass both the peanut and egg challenge, and that we wouldn't be dealing with this again this year. Maybe next year though.

What Will the Next Year Bring?

2011-10-24T23:32:00.002-04:00

Luke has had some speech advances since starting PROMPT the 2nd week of September. He can now say out and on spontaneously. Up is a struggle for him, but he can say it with some help remembering to start the word with an open mouth and end with "soft /p/ sound. When you tell Luke to say up he tends to say "duuuh". We have to tell him no, open your mouth. Say soft /p/. It's quite a process for such a small word.

It is exciting how much progress he has made over the last few weeks. I know to many words like out, on and up don't sound like much. But when you consider that he spent six months in traditional speech therapy through the county and never even attempted those words, it's huge that he's saying them.

Luke is now also singing. It amazes me that he can "sing" along with so many different songs. He may not be able to say the individual words, but he uses intonation to sing along, and you can definitely pick out the different words. Luke will also sing the alphabet with his Leapfrog fridge toy. And, he counts up to 13 on his own. You just have to listen closely to understand some of the words, but they're there.

Luke will be 3 in a few weeks. I can't help but wonder what the next year will bring for him speech wise. I hope and pray that we continue to see improvement.

Luke

2011-10-24T11:36:00.001-04:00

Apple Tote Craftiness

2011-10-21T20:21:00.001-04:00

I rarely make anything for myself. It's just much more fun to make cute little things for the boys.

I saw this on Pinterest awhile back, and wanted to give it a try.

I mean, can you really have too many totes?

I LOVED the color combo in the one shown, but the green and blue paints that I had on hand didn't seem to go together as well as the ones in the picture. So I went wild and crazy, and came up with my own thing.

The best part? I used a tote bag that I had on hand. I made some totes for my aunts last year with their intials on them. And I had a couple that I messed up. I turned one inside out, and voila, good as new. The bag is obviously inside out, but who cares? Maybe I meant for it to look like that =)

Viking Boy - Mama Gets Crafty

2011-10-21T20:12:00.000-04:00

Can I just say how much I love I Am Momma Hear Me Roar? She always has the best ideas, most of which involve things for little boys. It can be hard to find craft ideas for little boys, so I was very excited when I stumbled across her blog last year. She posted this Viking Tee craft a few weeks ago and I knew I had to give it a try. I floated the idea past Cody, thinking I'd make it in his size but he wasn't impressed. He graciously passed the idea onto Luke instead =)

This craft involves using a freezer paper stencil, which I always love using. I Googled Viking hat and beard silhouette in Google images, and found a few to choose from. These particular images were pretty easy to cut out with an Xacto knife, unlike the Darth Vader one that I did a few weeks ago (I don't think I mentioned it, but cutting out all the Darth Vader details with an Xacto knife wasn't easy!).

I couldn't find the Tulip Beads in a Bottle at our local Joann or Michael's - though they do have it online here. I ended up ordering mine from Amazon.

And so, I present to you, Viking Luke!


Note the small stain - he cannot be trusted with a white shirt! He inherited that trait from his dad.

Weekly Accomplishments and Update - Speech and Homeschooling.

2011-10-14T17:21:00.000-04:00

Just a quick breakdown of some accomplishments we've celebrated this week!

Speech:

Luke has mastered a couple of new words. On, Out and Down are all coming out very clear! He still struggles with Up. Up, On and Out have been a challenge for him because they require you to start with an open mouth position when you say the word (go ahead, try it). Words like Down are a bit easier for him, because it starts with a closed mouth position. That is an example of what apraxia does. The motor planning involved with opening the mouth to say the word is difficult for him. It's not that he can't do it. It just takes extra concentration for him. I occasionally have to tell him to open his mouth when he says one of those words, because if he doesn't concentrate on it, the words come out "duh" for up, "non" for on, etc. So for him to be able to say these words without prompting, is huge! Very exciting progress.

Luke continues with the school system's "therapy". I put it that way because he's not receiving speech therapy. I'm not really sure what to call it. A resource teacher comes out and basically gives him toys to play with, and observes him. Now, Luke has been thoroughly evaluated by both the county (Early Intervention) and the private speech therapist, but never by Child Find (his current program with the school). My feeling is that the resource teacher, up until today, was in the belief that Luke had some kind of intellectual disability. She asked me last week if his speech had ever been evaluated (um, what?). She offered me cards with pictures to show him what I needed him to do (pick up toys, brush teeth, eat lunch, etc). The cards really got me going, because it made me realize that she thinks he doesn't understand us when we talk to him. Do these people even read the child's file?? Today she commented that his receptive language is fine. Yes, and she should have known that from day one. It's aggravating to know that someone, who's not even a speech therapist, is coming to our house weekly and doesn't even know WHY she's coming. My dealings with Child Find through our county has helped confirm my decision to homeschool.

Homeschooling:

Cody is picking up reading very well now that we've found a program that suits his level The Reading Lesson: Teach Your Child to Read in 20 Easy Lessons

This past week Cody has caught on to sight words and word groups, and read a BOB Books: Sight Words: Kindergarten book on his own! I had tears the first time he read it out loud for me. So very proud of him, and I'll admit, a bit proud of myself for teaching him. Definitely a rewarding moment.

I highly recommend The Reading Lesson if your child already knows the letters and letter sounds. We started out with 100 Easy Lessons and then The Ordinary Parent's Guide to Teaching Reading, both of which start out with letter sounds. Cody was bored with both programs, and so was I. We're on lesson #3 with The Reading Lesson, and he's already reading. The book suggests doing 2-3 pages per day in each lesson (there's about 10 pages per lesson) for Cody's age group. I leave it up to Cody though, and for the last 2 days, we've covered an entire lesson in one sitting. Yesterday he was begging me to do lesson #4 after finishing lesson #3!

I'm not knocking either of the other two programs. They seem like very solid programs. It's an example though that not every program, no matter how popular it is or how well it's designed, is made for every child.

The biggest piece of advice I can give is to check your library for curriculum books first. I was lucky in that our library had both 100 Easy Lessons and The Ordinary Parent's Guide, so we were able to try each for a couple weeks. The library didn't have The Reading Lesson, but I too the plunge and purchased it, because my instinct was that it would work for us.

Luke - I Am Your Father Tee

2011-10-11T19:15:00.001-04:00

It's been awhile since I shared anything crafty. My last few crafty adventures have been for baby gifts, and I mailed them off before I had a chance to take pictures.

First, Luke is not named after Luke Skywalker. We're not even really fans of Star Wars, other than the fact that my husband and I are both children of the 80's. Not to mention Hans Solo was more my type back in the day :)

A friend of mine who's husband is named Luke warned me when I told her what we were naming our second ~~minion~~ child that we would get a lot of the "Luke, I am your father" quotes. It hasn't happened yet, other than from my husband. But when I saw this Who's Your Daddy? shirt idea, I couldn't resist. I mean, his name IS Luke which makes it funny, right?

DIY Baked Egg Trial

2011-10-09T22:36:00.001-04:00

Let me start out by saying that this is the LAST time that we'll do a "trial" at home, even at the allergist's recommendation. I'll leave it up to the professionals from now on.

As I mentioned before, the allergist wanted us to give him something with baked egg in it. Cookie, cake, muffin, etc...things that are generally baked at 350-375 degrees for a minimum of 15 minutes. She instructed us to give him a serving, and if he vomited like he did the last time, to call and let her know. If he didn't, we were to try something else with baked in egg a couple more times. I think her thought was that the weekend he threw up after eating the cookie, and then the corn dog, was a fluke.

I was a little apprehensive about it, but Friday morning I was baking cookies anyway for a bake sale, and decided to go ahead and get the trial over with. I wanted to do the trial while my husband was home.

I baked the same cookies that I made the last time he vomited. The recipe called for one egg, and was supposed to make approximately two dozen cookies - I ended up with 18. I gave one to Luke, and his immediate reaction was "ewwww!". I think he remembered that the last one made him sick. I left him alone with it, watching him from the kitchen, and he nibbled at it. I got him to take a few bites by pretending to eat it myself. He ate about half of it before he abandoned it for good.

An hour later my thought was that he either wasn't going to react to the egg, or didn't eat enough of the cookie to react to it. I figured we would just have to try something else on Monday. I ended up leaving to run some errands while my husband stayed with the boys. I made it ten minutes from home, and got a phone call that Luke had vomited, but was otherwise ok. Just as I arrived at my first stop, I got another call - this time Luke was sneezing, his nose was running and his eyes were red. I went into panic mode. My husband wanted to give him Benadryl. I said no, I think he needs the Epi. My husband hesitated, said he didn't think it was that bad. I ended up driving home like a bat out of hell.

Once I got home, I saw that Luke was doing "ok". His eyes were watery, his nose was stuffy and a little runny, but nothing horribly bad. He was alert, using his own little Luke language to tell me that he threw up. I called the allergist's office, and the response was to keep him off of egg (duh) and to give him Benadryl. So no Epi was needed, but I thought for sure we were going to have to bust it out. To me it was a significant reaction, definitely worse than the ones he had previously with the same cookie and then a corn dog.

So we're pretty much back to square one. No eggs, no nuts.

Food Challenge Results

2011-10-06T18:41:00.000-04:00

I wish I could say that Luke's peanut challenge went really well. That he passed it with flying colors, and that I'm sitting here enjoying a peanut butter and banana sandwich to celebrate.

But I can't.

What I can say though, is that nothing dramatic happened, which is a huge win in my book. No Epi-Pens were used in the dramatization of this story.

We got to the third serving of peanut butter. They started out giving him a small amount on the tip of a tongue depresser, and smeared it on the inside of his cheek. Fifteen minutes later they checked his blood pressure and checked for hives, everything was good.

A few minutes later we moved on to the second dose, this time a bit of peanut butter on a spoon. He LOVED it. Licked it like it was an ice cream cone, asked for more. I was so excited, thinking it was a good sign. Fifteen minutes later, another blood pressure and hive check. Everything looked good.

Again, a few minutes later, they brought in the third dose. This time it was a bit of peanut butter, I would estimate about 1/4th of a teaspoon, spread on a mini Saltine cracker. Luke was in heaven eating that thing, and I was even more excited. The nurse promised him more when she came back. So we sat there, coloring, waiting for the fifteen minutes to be up. Then he sneezed. Sneezed again. And I could see his nose was starting to run. It caught my attention because his previous serious reactions both started with sneezing and nose congestion (along with vomiting). But I told myself it could easily have just been an innocent sneeze accompanied by a runny nose.

Then the scratching started. First his shoulder, the top of his head, then his chin. By the time he scratched his belly I was concerned, so I lifted his shirt. Sure enough, he had two hives right above the waistband of his pants. As I was looking him over, I saw another one pop up on his neck. I ~~panicked~~ fought the urge to run out of the room yelling for the nurse. By the time she came back, another one was next to the original one on his neck. They checked his blood pressure (it was fine) and looked him over. The doctor declared the food challenge a fail, and it was stopped. He was given a mega dose of Benadryl (which made him one sleepy boy), and the hives slowly disappeared.

So, no peanut butter for another year, we'll re-test then. The doctor feels that he has a good chance of outgrowing the allergy, we're just not there yet. She thinks that his reaction today, compared to how he reacted to a similar amount of peanut butter 18 months ago, is a good sign that he's in the process of outgrowing it. Although that doesn't mean we can assume any other reactions will be similar. A reaction is not an indicator of future reactions. You can go from a very mild one, like he had today, to anaphylactic the very next time. This is also an excellent example that you can't rely on blood test numbers to determine what, if any, reaction someone will have to an allergen. Luke's blood test number for peanuts was negative, yet he still reacted.

As for the egg issue, she was puzzled with his reactions. 70% of kids with egg allergies can handle baked in egg, which is what he had when he had the two reactions (one to cookies, the other to homemade corndogs). So she wants us to try baked in egg and see what happens. I'm baking cookies tonight, the same one he reacted to. If he vomits again, we're to stop and let her know. If he doesn't vomit, she wants us to try it a few times. If he vomits, we'll have an in office food challenge for eggs, I'm assuming baked eggs. Figures my kid would be the one that can handle cooked eggs, but not baked! (Baking an egg changes the proteins, which is where the allergen is, and because of this, most kids can handle eggs if they're baked at a certain temperature for a certain length of time)

Domino's was another puzzle for her. I think we pretty much determined that there must have been some kind of cross contamination there. They have a white pizza sauce that contains egg, and I'm thinking maybe that got on the bread sticks somehow (same cutter maybe?).

Finally, she doesn't think he had an allergic reaction to the topical medicine. And the thought is that maybe he never had scabies. She thinks it was a viral infection, and it caused him to break out in hives. If he had reacted to the medicine, he would have been covered with hives everywhere that it touched, and he wasn't. It covered a good portion of his body, but not even close to everywhere that it touched (I put it on him from head to toe, as the directions said). And no, I'm not disappointed at all to learn that he probably didn't have scabies. I'll take that information any day! I itched for two days thinking that we were all covered in scabies.

So that's it. A fail, and some interesting information. The good thing is that it's not life altering for us, unlike how it was when we first learned of his peanut allergy. We'll continue on as we have for the last 18 months. We were looking forward to learning that he had outgrown the allergy, but dealing with it is very doable.

Peanut Challenge

2011-10-05T22:11:00.000-04:00

Tomorrow is Luke's peanut challenge.

I'm very nervous.

I think I've put the challenge out of my mind, pretending like it wasn't getting close. This morning though, I woke up thinking about it, and it's been on my mind all day.

The egg challenge was difficult enough. I have a feeling giving my little Luke something that caused such a horrible reaction just 18 months ago will be even harder.

Eighteen months of avoiding a food item like the plague. Fearing accidental contact, devoting every waking minute to making sure that he didn't come close to it. And tomorrow I'll smear some on a saltine cracker and feed it to him.

Also on the to do list - talk to the allergist about the reactions he had after eating egg (and the mysterious Dominos reaction), and the reaction that he had to a topical medication last week (long story short, Luke got scabies, I applied the same cream that Cody was prescribed, and Luke woke up the next morning covered in hives).

Word Explosion

2011-09-28T23:25:00.000-04:00

Luke has had a bit of a word explosion the last few days. Some of his new words/sayings...

Bubble

More juice

Juice please

Nana and Papa (or Papa and Nana)

No dada

All but nana and papa are said when prompted, but even as prompted sayings, this is amazing. In the past he had very few multi word sayings. "I did it" and "what's that" were basically his only multi word phrases, and he started saying them quite awhile ago. So to have several new multi word sayings in such a short time has been very exciting.

On another note, I am very frustrated with the resource teacher he is assigned to by the school district. We've only met with her twice, one of which was an official session. I have had the hardest time getting her to tell me when she will be here the following week. Last Tuesday I asked her as she was leaving, and her response was that she'd have to check her schedule and let me know. I figured I'd hear from her before the weekend, but I didn't. Finally this past Monday at 4pm I emailed her about it, and she responded that she would be here at noon the next day. I'm glad I emailed her, because I had no clue otherwise. I ended up having to cancel that session because we all have colds and they have a strict cancellation policy for any illness in the home. She wanted to fit him in on Friday, but he has private speech therapy that day. So she said maybe Thursday, and that she'd let me know. Well, it's almost 11:30pm on Wednesday night, and I haven't heard from her. I find it very unprofessional, and there's no way I'll continue to go on not knowing until the last minute when she'll be coming out.

Homeschool Update

2011-09-26T23:46:00.000-04:00

Things have been so-so, but I think I've figured out what was causing problems.

The first was the timing. We were originally doing all school work in the afternoons while Luke napped. This meant that it was about 2 or so before we sat down, after a long morning and early afternoon. I was tired. Cody was tired. Neither of us was really enthusiastic about doing anything. Our solution? Today my goal was to do an hour or two in the morning before Luke woke up. Well, Cody slept in so that didn't happen. Instead we spread school out over the course of the day. He sat at the kitchen table and did Explode the Code (ETC) for awhile. Then he moved on to some copywork, and finally a few addition worksheets. By the time Luke's nap rolled around, we just had math and reading left. I would have preferred to be done by then, but it was better than doing everything in the afternoon. My new goal is to do the core, more difficult, stuff like math while Luke is asleep or otherwise occupied. The easier stuff I want to do when he's around so he'll be involved, even if indirectly.

Which brings me to the second issue. I had wonderful ideas of including Luke, using the Tot School packs with him. Yeah right. He has zero interest. Even just having him in the school room with us, playing, was extremely distracting. So we're going to drop that and try again in a few months.

The third was the curriculum. As excited as I was about Five in a Row, Cody hasn't been thrilled with it. The activities that go along with the books have held his attention, but reading the same book every day for a week did not float his boat at all. And to be honest, when we sat down the second day of school to read Mike Mulligan for a second time, I wasn't excited about it either. We read the book once, and revisit it if the activity requires it. Cody can narrate every book that we've read, so I think they're sinking in very well even being read just once.

Cody LOVES books. His backpack is so heavy by the time we leave the library that he can't carry it. He looks like a turtle that's about ready to fall over. But reading the same story repeatedly isn't his thing. He's never been one to latch onto a book and beg me to read it to him over and over. I think he realizes there are lots of good books out there, so why spend so much time on just one?

I'm also backing off on just doing only Five in a Row unit studies. Homeschool Share has lots to choose from, and I've selected a few fun ones to supplement FIAR. One issue that I have with FIAR is that many of their books are a bit heavy for kindergartners, in my opinion anyway. So I've selected the ones that I think Cody will enjoy, and will save the heavier ones for down the road.

I've also made other changes - I switched from Teach Your Child to Read in 100 Easy Lessons to The Ordinary Parent's Guide to Teaching Reading. 100 EZ Lessons just didn't appeal to me. I added All About Spelling (AAS), which we started today. I went from not using Handwriting Without Tears (HWT) to adding it in. I also purchased an early American history curriculum, but I'm undecided on if we'll use it this year, or next. We don't do every subject every day. ETC, AAS and HWT are twice a week, and not on the same days. The only daily subjects are Math and Reading. Science and Art are 1-2 times a week. Geography is at least once a week, sometimes more depending on the story.

PROMPT Week Two

2011-09-21T09:40:00.001-04:00

Let me start off by saying that I was nearly in tears when we left Luke's PROMPT therapy session the other day.

But not for a bad reason.

I spent 35 minutes of his session in the waiting room. The therapist had requested that I come back to the therapy room at the 35 minute mark, so I did. What I walked in on was amazing.

She had Luke standing on a small table, facing a tall shelf that held one of his favorite characters, a Woody doll from Toy Story. She was telling Luke, if you want Woody you need to tell me "up". Luke did his usual, "da" sound. She worked with him on it for a few seconds, and he said "UP!". My baby boy said up, using the /p/ sound! Then she worked with him some more, and he said "ON" very clearly.

Luke spent six months with early intervention through our county receiving speech therapy, and they were never able to get him to say either word. One session with PROMPT, and he said it. I was just so proud of him, and so excited.

We've continued to work on both words since then. He still really struggles with it. The therapist explained to me that he doesn't have the typical awareness of his lips like you and I do. And lips are important when saying a sound like /p/.

One cute story - I was trying to get Luke to say "up" yesterday, and as he strugled to say it right, he grabbed my hand and put it to his mouth to do the PROMPT technique.

Here is a video example of what PROMPT therapy looks like.

Luke also received his first hour session with the resource teacher from Child Find. I have to say that I had low expectations. And while I don't think her type of therapy will be a cure all for Luke, I do think that it will help. We spent the session sitting at the kitchen table with small toys that she brought, and at one point he was playing with a small stuffed turtle, a ball and his own Mater truck. He piled the ball on the turtle, and then balanced the truck on the ball. She was working with him on some wording, and asked him where Mater was. He answered, "On the ball". It wasn't super clear, but both she and I were able to understand it, and I think most people would be able to also. HUGE accomplishment!

Apple Picking - How to Make an Apple Pie and See the World

2011-09-21T09:13:00.001-04:00

This past Sunday we all went to Stribling Orchard in Markham, VA. It was an easy drive, about an hour each way. I chose Stribling for a couple of reasons. No admission fee and you can park right in the orchard. Perfect! No need for a stroller, and the walk is short enough that Luke's little legs didn't tire out too fast.

There were several varieties of apples available the day we went, though Cody was a little disappointed that they didn't have Granny Smith. He loves sour stuff. It took us about 30 minutes to fill two small bags (provided by the orchard) with apples. Luke had a blast finding apples on the ground and eating them, much to my dismay. It didn't seem to bother him though, he walked around with an apple in each hand, alternating bites, declaring "tasty!" after each one.

Once we were done, we drove back down to the store to pay for our treasures. Two small bags equal 2 pecks, 2 pecks equal half a bushel. It came up to $25. $25 for apples sounds like a lot, but those 2 pecks weighed in at around 20lbs.

We wandered around their store briefly, but there wasn't much to it other than some baked goods and various canned preserves. Normally I would have bought some, but since we're still unsure of Luke's allergies, I had to pass on them.

Tomorrow or Friday Cody and I will finally make the apple pie that we were supposed to make last week.

This week's theme of apples tied in with our Five in a Row book of the week - How to Make an Apple Pie and See the World. We studied apples, the cycle of apple trees and apples themselves. Labeled the parts of an apple. We also studied Johnny Appleseed, which Cody really enjoyed.

PROMPT Therapy - The Beginning

2011-09-13T20:37:00.000-04:00

Luke had his first session with the PROMPT therapist yesterday. He's doing 45 minutes once a week right now, through September. In October we'll have to make decisions on whether we'll stay with the office he's going to now, or move on. A lot of this will be determined by what our insurance company decides to do as far as coverage goes.

The therapy itself was pretty uneventful. Parents don't go in for the therapy, so I can't comment on what went on. The therapist told me that he did really well seperating from me, but she learned that she needs to limit the number of toys in the room because he was very excited about them, and didn't want to focus on one thing. I really think that right there was a big reason why home based therapy didn't work for us. Too many distractions here.

We're to work on aproximations for "on" and "up" this week, and he'll go back for his next session on Monday.

I spoke with a mom in the waiting room while I was there, and her daughter has apraxia too. She told me that pretty much everyone there does, so I guess it's true that this one office is known for treating apraxia.

Related to this, it turns out that a family friend of ours does accounting work for a speech therapy group down the street from where we live. They are a sliding scale service, based on the patient's income, and one of the therapists is known for being very helpful with apraxia. I'm looking into them as an alternative. As much as I like the therapist he's seeing now, it's a drive to get there. And I'm pretty sure that once we get going they'll recommend he come in 2-3 times a week. If we can find someone just as good, but local, it will save us a lot in gas and travel time. But, if I feel like the office that's further away will do a better job, we will stick with them. I just want to do what will help him, everything else (money, travel, etc) is secondary.

Home based therapy with the school system didn't happen today because of Cody being sick, so Luke will start next week instead.

Fall 2011 Bucket List

2011-09-13T20:28:00.005-04:00

Inspired by a printable that I found on Pinterest

~~Visit an orchard to pick apples~~

Make leaf art

Go on a hay ride

Pictures of the boys jumping in a leaf pile

Make caramel apples

Get lost in a corn maze

Visit a pumpkin patch

Trick or Treat!

~~Bake an apple pie~~

Decorate pumpkins

~~Picnic outside~~

Visit the zoo

Feed the ducks

Homeschool - Mama Learned Something

2011-09-13T20:22:00.000-04:00

What did I learn today?

Just say no to forcing school.

Yesterday we got about halfway through the school work that I had planned because Cody wasn't feeling well. Last night he started feeling even worse, and today he slept until about 12:15, which if you know him, you know it means he was feeling pretty crappy.

Him sleeping so late completely threw our day off, but I was determined to get school in as long as he was feeling ok by this afternoon.

Luke decided to not nap, and at 4:00 I gave up and got him out of his crib. I gave him a couple "fun" things to do, and Cody and I sat down to get started.

Except Cody still wasn't feeling 100%.

Luke wasn't digging the "fun" stuff and preferred shoving toys in mine and Cody's faces while laughing hysterically.

Mama was irritated because the afternoon wasn't going as I thought it should.

Cody was having trouble concentrating. I was having trouble with patience. Not a good combination.

Once I finally gave up, and put everything away I realized one of the advantages of homeschooling is that we don't HAVE to follow a set schedule.

Who cares if we only get a couple things accomplished on a certain day?

It doesn't mean we can't make up for it the next day, or even later in the week. Everything will get covered. He will learn what he needs to.

Tomorrow is a new day, and hopefully I will remember these things and will be a more relaxed homeschooling mama from this point on.

Ten Years

2011-09-11T23:24:00.000-04:00

Be not overcome of evil, but overcome evil with good - Romans 12:21 (KJV)

Ten years ago today I was in Oceanside, California, thousands of miles away from my home in Northern Virginia.

On September 10, 2001 I flew from Reagan National Airport to San Diego for what was supposed to be a wonderful trip.

My then fiance (now husband) was returning from a six month deployment to the Middle East. He spent six months with the 11th MEU (Marine Expeditionary Unit) out of Camp Pendleton, CA. We were nearing the end of a 4 year long distance relationship, so I was used to being away from him for a few months at a time. But never as long as six months, and never where I had to worry about him so much.

His travels took him from San Diego, to Hawaii, to Australia, and then on to places like East Timor, United Arab Emirates and Jordan. While in Jordan, he was part of the group of Marines that bin Laden threatened to attack if they did not leave the country (which, strangely enough, I can't find any news information about).

As the summer of 2001 came to an end I started planning my trip to California.

I was so excited, but nervous.

I had never traveled somewhere so far away, by myself, without someone waiting for me. I had been to Southern California many times, Ryan was always there waiting.

The other obstacle was the timing. The military is famous for giving one date, then changing it. I settled on September 10th, a Monday, even though his ship wasn't scheduled to return to port until that Wednesday or Thursday. I was afraid if I flew during the middle of the week, they would change the return date and I would miss his return. And after waiting six months for him to get back, there was no way I was going to miss it! I was a veteran Marine Corps girlfriend at that point, and I felt I had earned my exciting military "Welcome Home" pomp and circumstance excitement.

Then word came that they pushed the return day back to Friday, possibly Saturday. I had already planned to do some sight seeing on my own until he returned, but I wasn't sure I wanted to do that much. So I briefly considered changing my flight to the Tuesday, September 11, instead. But the amount of money to change the ticket wasn't worth it, so I stuck with my original plans.

On September 10, 2001 my mom drove me to Reagan National Airport very early for my 6:30am flight. We took the HOV lanes on 395, and got stuck in some nasty traffic just as we were coming up on the exit for the airport, which happens to be right before the Pentagon.

I finally got to the airport, and said goodbye to my mom at the gate (remember the days when you could do that?). The flight was uneventful, though I was nervous as always, because flying scares the living daylights out of me.

Once I landed in San Diego, I managed to locate my bag, find a shuttle to the rental car lot, and secure my rental. It's funny how clear those memories are. I can still see everything that happened during that time, like it was just a few days ago.

I got on interstate 5 and made my way to Oceanside. I just remember thinking, holy cow I'm driving on the highway in California! And being so thankful that there wasn't hardly any traffic.

I found my hotel, and got lunch at a taco place next door. I got checked in, called my parents and then Ryan to let them know I made it, and set out to find food. That mission didn't go well, and I ended up with snacks from 7-11 before returning to my room.

The next morning, I woke up around 6:30 local time. I'm the type that turns the t.v. on as soon as I get up. I can't stand having complete silence, I need the background noise. For some reason though, I didn't that morning. I was getting ready to get in the shower about five minutes after I woke up when my cell phone rang. I almost didn't answer it, but I did.

It was my dad. He asked me if I was watching tv - I said no. He told me that planes had hit the World Trade Center, and one had just hit the Pentagon. I laughed. I said you're kidding, right? He said no. I said, what channel do you think it's on? I'm pretty sure that's what shock sounds like.

I turned the t.v. on and there of course was plenty of coverage of the events. Then not long after, the first tower collapsed as I watched. I dropped to my knees and started crying.

My dad calmed me down, and the rest of our conversation is a blur. Once I got off the phone with him, I tried calling my mom.

Both of my parents were working within just a couple miles of the Pentagon. Flight 77 flew directly over my dad as it took it's route that was parallel with Columbia Pike to the Pentagon, my dad saw it fly over. My mom was working for the federal government in a building just a couple blocks over from the Pentagon in Crystal City. An area full of government offices.

When my dad saw the plane go over and heard the crash, he called my mom and told her to get out. Then he called me. My mom was lucky that she left the area when she did, she was able to get a head start from everyone else. The area was so gridlocked with people trying to leave that some people abandoned their cars on the side of the road and walked.

When I was finally able to get through to my mom, she was at home. We just sat on the phone watching the news coverage, crying. I eventually got off the phone, and went in search of a computer so I could email Ryan.

That's when my next panic set in - what if he didn't get to get off the ship? What if they were turned around and sent back out to fight? What if California was next?

In the lobby of the hotel, they had the tv on watching the news coverage. I broke down again, and the desk clerk just hugged me. I will forever be grateful for that.

I found the public computer lab, and emailed Ryan asking him to call me ASAP. I tried to go to the mall, but it was closed with a sign saying something about it being a large target and closing for safety reasons. I found a Target and wandered around. I remember telling the cashier that I was from Northern Virginia and my home was just attacked.

Ryan finally called me, and we talked a lot. He didn't know what to expect either, no one was saying. I sat in my room watching the tv pretty much nonstop. The next day I discovered that I could see the group of three ships with the 11th MEU from a marina near my hotel, so I sat there for a couple hours just watching them.

I watched the line of cars of people trying to get onto Camp Pendleton - I was across the street from the base. I decided that if any kind of attack happened there, I was getting my butt over the fence and onto the base somehow, someway.

The rest of the week is more of a blur. I did a lot of sitting at the marina, a lot of talking to my parents on the phone. I called my former employer, which happened to be with the Marine Corps. I wanted to check on the Marines that I worked with, and make sure no one was in the Pentagon. Turned out one man was, it was his second day working there. He wasn't hurt though, thankfully. I called the Red Cross and donated money. I found a Trader Joe's and was finally able to stop eating junk from 7-11. I didn't do any sight seeing, I rarely left my hotel.

Finally the day came that Ryan was going to be able to get off the ship. I made my way onto the base, and got through security (one Marine was very friendly, the other I'm pretty sure growled at me a couple times). There was no big welcome home celebration. Everything that I had waited six months for went out the window. Our welcome home was me sitting in my rental car at the barracks, waiting for someone to drop Ryan off.

Once he was back, the next obstacle was how I was going to get home. At that point the planes were still grounded. I was terrified of flying anyway. We looked into taking a train back home, but it was $800 for a one way ticket without a sleeper, just a seat. No thanks. I considered staying in California until Ryan got out of the Marine Corps later that fall. I decided that the terrorists wouldn't force me to do something like that, and scheduled a return flight.

I can't remember when I flew home. I know it was a few days later than I had originally planned on, because we had to wait for flights to resume. But I know I was scared to death. I left Ryan at the security check point, and went to my gate. I cried and cried. I managed to lose my address book, but some kind person found it and tracked me down. I was a mess.

Once on the plane, things got worse. My row mate was an arabic man. I didn't even notice that until I realized he was reading an arabic newspaper. I just remember staring at him, then looking up and making eye contact with the flight attendant that was coming down the aisle. She stared at me with a panicked look on her face. I'm sure I looked the same.

My flight home was uneventful other than that. I flew into Dulles Airport this time, because National was still closed. I'll never forget walking through the doors and seeing my parents waiting for me. I can still remember how it felt, almost like I was sinking into the ground. Just such a "thank God I'm home" kind of feeling. I was so scared that they would get hurt because they were so close to the Pentagon attack, it was such a relief to be able to hug them.

So here we are ten years later. My husband is no longer a Marine. He got out of the Marine Corps that December, but was then called back to active duty in March 2003 right before the start of the war.

I'm now the mom of two wonderful little boys. It scares me to think that they may one day follow their dad's foosteps into the Marine Corps. Ryan and I have agreed that if they decide to do this, we will support them. But we will not encourage it, nor do we talk a lot about his years in the Marine Corps. This is hard for me because I'm so proud of my Marine, and of my time as a Marine Corps girlfriend and wife. Ryan likes to say that I'm more OOH-RAH than he ever was, and he might be right. But as things stand now, things aren't the same as they were when he was in the Corps. They're much scarier.

As the mom of two boys, I know that it is my responsibility to teach them about that horrible day. Luke is obviously way too young. But I read FIREBOAT: The Heroic Adventures of the John J. Harvey to Cody this week. It is a nice story about a fireboat in New York and includes some historical information. The section about 9/11 is fairly short, and I think it introduces the subject well. Cody is still too young to understand, but I wanted to open the subject to him since he would be hearing about it on the tv, and from us, today. He understands that bad people did a bad thing, and that people lost their lives. But we mostly focused on the good - that many people survived, and that many people were heroes that day, and we have lots of brave people protecing us to make sure that something like that never happens again.

I pray that my children never experience anything like 9/11.

First Day of {Home}School

2011-09-06T19:05:00.000-04:00

Today was Cody's first day of Kindergarten! We got started a little later than I had planned, but otherwise the morning went pretty as expected. We read Mike Mulligan and His Steam Shovel for Five in a Row, and talked about the old fashioned things in the book, such as a horse and carriage delivering milk. We also did lesson 1 in the Right Start Math book, and "f" in Get Ready for the Code - Book a. The only obstacle that we came across was writing in the ETC book. Cody is not a big fan of writing and gets frustrated, so I'm going to have to rework how much of that he'll be doing. We'll work on easing into it instead of frustrating him with it.

We worked for about two hours and then were done with the day's lesson. Cody announced that he wanted to do more, so I spent a good part of the afternoon preparing more to do tomorrow.

Combining Tot School with Five in a Row

2011-09-02T15:40:00.007-04:00

I've been brain storming ideas for how to include Luke in with some of our studies. The bulk of Cody's studies will be done while Luke is asleep, either in the morning or during nap time. I want to include him too though. I'm a huge fan of 1+1+1=1 - Carisa's blog is what got me really thinking about homeschooling. She has some amazing Tot School ideas, including lots of theme printables. Each letter of the alphabet has a theme, and I thought it would be fun to match up themes with the different Five in a Row (FIAR) books. This is the list that I have come up with so far, I will be updating it as I go through the Volume I and Volume II FIAR books.

Aa - Fruit (Apple) - How to Make an Apple Pie and See the World

Bb - Outdoor Fun (Ball) -

Cc - Pets (Cat) Papa Piccolo

Dd - Birds (Duck) - Story about Ping or Make Way For Ducklings

Ee - Food (Egg) -

Ff - Body Parts (Foot) - Madeline

Gg - Farm (Goat) - The Tale of Peter Rabbit

Hh - Tools (Hammer) - Mike Mulligan and His Steam Shovel

Ii - Cold Weather (Igloo) - Katy and the Big Snow or Very Last First Time or Stopping By Woods on a Snowy Evening or Owl Moon

Jj - Ocean (Jellyfish) - Night of the Moonjellies

Kk - Household (Keys) -

Ll - Nature (Leaves) -

Mm - Small Mammals (Mouse) -

Nn - Bugs (Net) -

Oo - African Animals (Ostridge) - The Giraffe That Walked to Paris or the alternative/go along Zarafa: The Giraffe Who Walked to the King

Pp - School Tools (Pencils) -

Qq - Royalty (Queen) -

Rr - Rainforest -

Ss - Outer Space (Star) -

Tt - Transportation (Train) - Mr Gumpy's Motor Car or The Glorious Flight

Uu - Weather (Umbrella) - Storm in the Night

Vv - Landforms (Volcano) -

Ww - In My House (Window) -

Xx - Instruments (Xylophone) - Lentil

Yy - Toys (Yo-Yo) -

Zz - Clothing (Zipper) - The Rag Coat or A New Coat for Anna or A Pair of Red Clogs

There are also several Tot Packs and Preschool Packs that have themes to match the books as well.

No Cheese!

2011-09-01T17:56:00.000-04:00

Luke has TWO new words!

The other day Cody was taking his picture, and said "say cheese Luke!". Luke responded with "CHEESE!". He doesn't say it spontaneously, but will say it when prompted.

Monday Luke's speech therapist told me to work on getting him to say No instead of Nah. We haven't really worked on it much since then, but today I asked Luke a question, and he very clearly said "NO!". He spent the rest of the morning and afternoon yelling NO at us whenever he didn't like something.

Very proud of my little man!

Speech Therapy - A Mama Reflects and Rants

2011-08-30T09:03:00.000-04:00

Yesterday was Luke's last day of speech therapy with his Early Intervention (EI) speech therapist (SLP). To say that I'm not disappointed with his progress in the EI program would be a huge lie.

I loved his SLP, I really did. She was very nice and Luke adored her. But I struggled the last few months with how I felt about the therapy that he was receiving. Speech therapy through EI is not what I expected at all. It was basically Luke playing with random toys in our living room, while the SLP sat with him, and would try to get him to say basic words. Up, down, help, more, etc. Even the amount of time given to us was disappointing. We started out with one hour every other week. Luke would do well the first week with trying new sounds with us, then the second week wasn't as productive. The SLP talked our EI coordinator into giving Luke 30 minutes every week. That went on for awhile, but again, it was frustrating. By the time she got settled in with Luke and did a little speech therapy, it was time for her to stop and fill out the form giving us instructions on what to work on for the rest of the week. Out of those 30 minutes, he probably got 15 minutes of solid one-on-one time. Not nearly enough.

At one point the SLP told me that she felt Luke needed more structured therapy, but that she was limited by what EI would allow her to do, which was the play based therapy. She came in one week gung ho about being more structured, EI's standards be damned. Had me find certain toys and items, and we spent one session at the kitchen table. The next week I was ready for more of that, but it was never mentioned again. It was very frustrating and confusing. A lot of that went on - she would give us instructions on what to do, but unless I mentioned it the following week, it was never brought up again.

Then all of the sudden, the last two sessions the SLP busted out with the type of therapy that I had been expecting. Modeling how to say certain sounds. More structured therapy. It had me wishing that she had done more of that over the course of his time with her.

I'm looking back at how he has progressed over the last seven months, and I'm sad to say very little. Yesterday's session was the same as the others - she was trying to get Luke to say up, down and help. I almost cried sitting and watching Luke struggle with the word up. You can see it on his face, he's thinking about it and wants to say it, but it doesn't come out right.

That of course is the apraxia. Kids with apraxia know they're saying the word right in their head, but they also know that what comes out isn't right. Which makes them hesitant to try, and when they do, there's lots of groping. Along with lots and lots of frustration on their part. It tends to lead to a good meltdown. It's very difficult to watch, not to mention heart breaking.

So here we are, done with EI. Where do we go from here? Luke starts seeing the PROMPT instructor that evaluated him last month, in a couple of weeks. He'll see her once a week for 45 minutes throughout September until we can get the insurance coverage figured out, then go from there. If insurance will accept the neurological diagnosis and cover his sessions, we get 100% coverage (minus $10 copay) for an in network provider. 80% for out of network. The SLP that he will be seeing in September is out of network.

The EI SLP mentioned us coming to see her privately. I'm torn, because I was happy with the last two sessions, but I'm very unhappy that it took us this long to get to that point. I realize she was stuck with what EI wanted her to do, but still. I'm not sure how a SLP can go through therapy with a child week after week knowing that the method they're using isn't working.

Luke will also be seeing a resource teacher with our county's public schools once a week for an hour. Yes, a resource teacher, not a speech therapist. I am completely disgusted with our county. I don't know how you can take a child that has been receiving SPEECH THERAPY for the last seven months, a child that was recently diagnosed with a neurological disorder that is causing their need for speech therapy, and stick them with a resource teacher. I have very little hope for how how much he will progress, and will be ready to yank him from the program if they're not willing to give him the right kind of therapy once we get rolling. I refuse to waste time on therapy that will not help him. Which is how I view the last seven months.

To continue with my rant on the school system, during our IEP meeting a few weeks ago, I of course asked why he wasn't getting a SLP. I was told that the county gives everyone a resource teacher to start, whether they have a speech delay or Down Syndrome (complete lie). They were also nice enough to mention many times that we are more than welcome to go with private therapy in addition to their services. Let's discuss the cost of private speech therapy. In our area, it runs from $100-$150 per hour. Kids with apraxia need 2-3 hours PER WEEK of intensive therapy. Most insurance companies won't cover speech therapy at all, because by law the school system is required to provide these services at no charge to the parents. So what do you do if the school isn't giving you the right kind of therapy, and your insurance company won't cover? You look for every single grant that you can find. And you pretty much go broke. But what can you do? He's worth it.

Our school system is failing kids like Luke. Kids that don't respond to typical speech therapy because they have a disorder instead of a delay are just out of luck in their eyes. The seven months that Luke spent with their version of speech therapy is a huge example - he did not respond to it, and he won't. By law the school is required to make an INDIVIDUALIZED education plan for every single child, and they aren't doing that. And people wonder why I'm refusing to put my children into their public school system.

Outgrown Egg Allergy?

2011-08-28T10:38:00.001-04:00

I hate to say this, but I think egg may still be an issue here.

As I posted the other night, Luke threw up after eating a cookie that I had made using a recipe that called for one egg. The recipe produced about two dozen cookies, so one egg spread out over that isn't much. My hope was that it was just a coincidence, and that he had picked up a bug.

Yesterday, during tropical storm (for us, hurricane for other parts of the state) Irene, I used the extra free time to do some cooking and baking. One recipe I did was for corndogs (which were very good). The recipe called for 2 eggs in the corn batter mixture. Luke had one corndog for dinner, and not too long after, threw up. He seemed fine after that, though getting him to go to sleep last night was a struggle, which is very unusual for him. I had to sit in his room and hold his hand for awhile to get him calm enough to sleep.

Again, my hope was that maybe he still wasn't feeling well, and it was just a coincidence. And maybe it is. But he ate other things yesterday, and other than waking up agitated yesterday morning, acted normal (as normal as far as a two year old goes anyway) all day.

So my game plan is to avoid egg most of the week. Thursday or Friday I'll give him something with baked egg in it, and see what happens.

I spoke with a friend of mine who's daughter has many allergies, including anaphylactic ones. She pointed out that he may not have reacted to the egg during the trial because he hadn't been exposed to egg in over a year, and his body might have "forgotten" that it didn't like it. I pray that it's not the case, and that both nights were a complete coincidence, and that egg is still ok for him.

Finally, we survived the storm. It brought lots of rain and some heavy winds, but nothing horrible for us. We lost quite a few tree branches, but to be honest, the tree needed a good trimming anyway. Thanks Irene!

The Week From....

2011-08-26T23:49:00.000-04:00

A nice little recap of the week in ThisMamasHeart's home...

Monday: Cody had his first dental cleaning. The boy screamed like he was being murdered before they even started. Hygenist had me lay on the chair, and Cody laid on top of me. I had to hold his hands down so they could do a quickie cleaning. At one point the hygenist told Cody that he was scaring the other kids.

(night) Noticed Cody scratching a lot, discovered a cluster of bug bites on his rear end.

Tuesday: Earthquake scared the living daylights out of me. Went on to be made fun of by west coast friends. Working on a plan for them to deal with 98% humidity for 1/3 of the year, snow/sleet/freezing rain another 1/3, and hurricanes for the final 1/3 of the year. Then we'll see who the weenies are.

Wednesday: (day) Managed to slam the outer 3 toes on my right foot into the corner of a wall as I turned down the hall. My foot has been jacked up ever since. The pain!

(night) Noticed Cody frantically scratching his upper thigh. Found another patch of the same bumps as Monday night.

Thursday: Took ~~Grumpy~~ Cody to the doctor about the bumps. Was told he has scabies. If you're not familiar with what scabies is, let me enlighten you. They're mites (teeny tiny microscopic bugs) that get under your skin and lay eggs. Oh and they're highly contagious by skin to skin contact. Came home and washed everything he has touched over the last week in hot water. We're talking a good 5 loads of heavy duty laundry. Waiting to see if anyone else in our house gets it. Can't stop twitching.

Friday: Topical Storm Warning! Hurricane Warning for the place in the Northern Neck (NNK) of VA where my parents have a house. Which means no trip to NNK this weekend. Which means none of my usual end of the week break. Braved a trip to Sam's with every one else in our area today, complete madhouse.

(night) Made Salted Double Fudge Cookies. They are GOOD. They call for one egg, which is good because we're supposed to keep egg in Luke's diet. Luke had one and loved it. Then went on to puke twice about 10 minutes later. Super. Panic moment. That's how his anaphylactic reactions initially present. Watched him like a hawk for the next hour, everything else was normal, so put him in bed.

Went to check on him a little bit ago, and he had puked allllll over his crib. Down the wall. Puke in his hair, on his clothes, his stuffed animals. He looks like he doesn't feel well, but I don't think it's food allergy related. I'm assuming it's from him licking the shopping cart handle at Sam's today when I turned my back for 2 seconds.

I want my mommy.

I Feel The Earth Move....

2011-08-23T23:07:00.000-04:00

Wow, what an interesting day. Just before 2pm today we experienced our first "major" earthquake. It doesn't compare to any of the big ones that places like California and Japan have experienced, but it was big for us! The epicenter of the earthquake was about 80 miles from where we live.

My husband had just gone downstairs to hang our new address plaque outside. The boys were playing in the living room, and I was putting stuff away in the hall closet. I heard a weird noise, and felt the floor move. My first thought was that our dog had jumped on the couch to look out the front window (he's a big boy, and the floor moves when he does this!). Then the moving got more intense, and it got louder. I mostly noticed the noise coming from the kitchen, and it sounded like the table and chairs were rattling. So then my thought was that our dog was having a seizure or attacking one of the cats. At that point he ran past me and dove under our bed (he's my protector). So my thought jumped to the large trucks down the street that had been working all morning. But then it all went crazy - the walls and floor were shaking, the large front window was rattling. It was such a LOUD noise, everything moving and rattling. I ran for the large entry way to the kitchen and grabbed Luke. Yelled for Cody to come with me, just as my husband ran up the steps. I just kept asking him what was going on. It wasn't until it was almost over that I realized it was probably an earthquake.

I won't lie, I was in panic mode. My voice was a a much higher pitch than normal, and I was shaking. Poor Luke, my sensitive little guy, started crying as soon as he realized I was scared. Note to self - stay calm during next earthquake!

We went outside, and most of our neighbors did the same. A few minutes later the news reported that it was a 5.9 earthquake.

Virginia doesn't typically have this type of activity. The last earthquake at this magnitude was over 100 years ago. We have had earthquakes in the past, but they've never been anything you could feel. You hear about it on the news, and that's about it.

Around 8:00 tonight I was in the kitchen leaning against the counter, reading, while the boys were in my bedroom watching tv. As I stood there, I felt *something*. Nothing major, but enough for me to stand there wondering if I was imagining things, or if I was really feeling something. Sure enough, a 4.2 aftershock was recorded at 8:04.

I really think I'll stick with my east coast living. I'm not sure I want to live somewhere that has this kind of thing happen more often than every one hundred years or so. I prefer tropical storms and hurricanes that give you a nice long warning that they're heading for shore!

Peanut Challenge

2011-08-16T17:05:00.000-04:00

I wish I had some exciting news, but I don't. Not because Luke didn't pass the challenge, but because it didn't happen today. Luke has an upper respiratory infection, has had it since last week. The allergist's office wanted us to evaluate how he was doing on Monday, and either keep the appointment or cancel. He was still wheezing yesterday, and his chest was still pretty rough sounding, so we had to reschedule. What really sucks is that they didn't have another opening until early October! Grrr. He's sounding better today, but still not 100%. I'm anxious to get the food challenge over and done with, but I wouldn't have felt comfortable taking him in for it unless he was completely healthy.

Apraxia and Supplements

2011-08-10T10:39:00.000-04:00

It has been brought to my attention that SpeechNutrients™, a supplement containing fish oil and vitamins K and E (all of which are recommended for helping children with apraxia) is not a recommended brand. This is due to the excessive amounts of Vitamin K and E

According to the product’s chart, the recommended dose of 4 capsules per day (2 capsules twice per day) has children under 4 taking 10,000% of the recommended daily allowance of vitamin E (according to their information, no allowance has been set for children under 4). People aged 4 and over would be taking 3,330 % of vitamin E and 5,750 % of vitamin K. Since they are vitamins, the doses are not as regulated as medication, so 40 pound 4-year-olds are lumped in the same category as 250 pound, 40-year-old men.

I ordered this product for Luke because it was labeled as peanut, egg, etc free. Thankfully we just bumped his dose up to 2 capsules a day, so his levels haven't been extreme. I am discontinuing use of this as of today, and will be switching to Nordic Naturals instead. More information about SpeechNutrients™ can be found here. A good example of needed to thoroughly research before giving any kind of supplement. I was so excited to find a fish oil supplement that did not have a peanut warning that I jumped the gun.

Developmental Pediatrician

2011-08-05T15:30:00.000-04:00

Yesterday was our visit with the developmental pediatrician. We saw Dr. Chuck Conlon, located in Bethesda, Maryland. If you've stumbled across this blog and are looking for a good developmental pediatrician in the VA/MD/DC area, I highly recommend him. He was formerly with National Children's Hospital, but is now in his own practice. We were very happy with the visit. I will warn you though, the visit is pricey - $575 for a 2 hour visit, and they don't accept insurance. You can submit a claim to your insurance company though, and hope for reimbursement.

Dr. Conlon was very thorough. The first hour was spent with my husband and I talking with the doctor, and Luke played quietly with the toys in the room we were in. The second hour was spent with the doctor focusing on Luke. He interacted with him, asked lots of questions (to us). His diagnosis for Luke was apraxia, as I had suspected. Part of me was relieved to have a diagnosis. This was mostly because of the insurance issues. I had a strong feeling that Luke was dealing with apraxia from the moment I first read about it. And once again, mom's intuition has proven correct. If I've learned anything from mommyhood, it's to listen to my intuition. If something doesn't seem right, don't ignore it! Moms know their child better than anyone in the entire world.

I am sad too though. Sad that Luke has yet another hurdle to overcome. Sad because I know it means my sweet boy will have a lot of work ahead of him. Sad because I would give anything for an expert to tell me that I'm wrong, and that he'll start talking any day now. I would give my right arm to hear him say I love you. Or hi mommy. Or to even chew his big brother out when he's aggravating him.

Luke's apraxia is not considered severe. Many kids with apraxia will not have a single word. Or may have one or two sounds. Luke doesn't have many, but he does have some. This gives me hope that he will respond well to therapy.

The plan now is for Luke to begin therapy with a PROMPT instructor in September. He will see her for a month, 45 minutes a week, and hopefully during that time insurance will accept the diagnosis and begin coverage. We'll re-evaluate his needs once that month is up, and create a new plan.

He will also be transitioning from early intervention to the school system at the same time. I don't have as high of hopes for the school system helping him. According to the doctor, our county did not do as they should have for Luke with our IEP. They did not give him a full evaluation, and they did not tailor his services to his individual needs. At this point I have lost most hope in Prince William County being of much help. We will begin both services, and if I need to I will request another IEP meeting, this time using an advocate. I will make sure that Prince William County Child Find gives Luke the assistance that he is legally entitled to.

Child Find and Developmental Pediatrician

2011-08-02T16:51:00.000-04:00

Some good news! Yesterday we received a call that the developmental pediatrician that Luke was too see in December had some cancellations, and we've been moved up to this Thursday! I'm hoping that the doctor will give us an actual diagnosis so that insurance will cover private speech therapy starting next month.

Today was our IEP meeting with Child Find. I was prepared to duke it out with them, but it went well. They are giving Luke 60 minutes a week, in our home. The only thing I wasn't happy with is that he will be getting a resource teacher. I wanted to fight for a speech therapist, but apparently the county does not provide one until down the road if the child starts talking and has articulation problems. I plan to look more into that, but for now, we agreed with what they proposed. My hope is that we'll get the diagnosis, insurance will cover speech therapy, and he'll get everything he needs from a private PROMPT therapist. If it goes that way, the county services will just be a bonus anyway.

2011-2012 Curriculum

2011-08-01T21:27:00.005-04:00

This is my first year homeschooling, and I'm sure I will make changes to the curriculum as we go along. I'm hoping that I spent enough time researching before I made a decision - it sure felt like I did! We are currently going through review to learn what Cody knows and still needs to learn to be prepared for kindergarten. For this I am using Confessions of a Homeschooler's K4 printable curriculum. I am disappointed to learn through this how much Cody was NOT taught in preschool, considering the preschool that he went to is known for their academics and preparing kids for kindergarten. Basically what he knows is what I taught him before he started preschool last fall.

School will start September 6th, which is the same day that public schools start here.

Luke (3 in November) - Tot School

*Luke has a severe speech delay which makes it hard to determine what he does and doesn't know. What we do know is that he's familiar with some letters and numbers, several colors, and appears to understand counting. He has a fascination for letters and numbers. Hoping to get to a point soon where it's easier to communicate with him.

*Luke will be joining us for some of Cody's instruction. ~~He will also be attending a church based preschool program that has a special needs program. This is mostly to help with his speech.~~ He was originally enrolled in a preschool program, but today we withdrew him from it. Several factors came into play for that decision (none of which involve the school itself), and I believe we made the best choice for him.

*I will be using 1+1+1=1's Tot School printables and ideas.

*Lots and lots of learning through play!

*Luke will also be receiving private speech therapy once a week, and speech therapy through the Child Find program.

Cody (5) - Kindergarten

*Bible - My ABC Bible Verses: Hiding God's Word in Little Hearts

*Five in a Row for language arts, geography, history, social studies, science and basic math.

*Right Start Math A

*For phonics -Get Ready for the Code - Book a,Get Set for the Code - Book B, Go for The Code-Book C and Explode the Code 1. Trying to decide between The Ordinary Parent's Guide to Teaching Reading and Teach Your Child to Read in 100 Easy Lessons. I have both on hold at the library and will be going through them before I decide. Also using other resources such as 1+1+1=1's You Can Read!.

*Handwriting - Handwriting Without Tears - Kindergarten. Will eventually move on to A Reason for Handwriting: Level A: Manuscript Student Workbook.

*Science - no official curriculum, just fun experiments such as Operation Firefly.

*History - no official curriculum, will introduce early American history. We are in Northern Virginia, so we are surrounded by wonderful field trip opportunites related to early American history. I plan to take a trip to Williamsburg, Mount Vernon Plantation, and Washington D.C. during our studies.

*Art - Draw Write Now, Book 1: On the Farm-Kids and Critters-Storybook Characters

*Physical Education - Looking into signing him up for either swimming or tennis lessons.

In Office Food Challenge - EGG

2011-07-26T22:21:00.000-04:00

I'm obnoxiously excited to say that Luke PASSED the egg challenge!

We got started around 9am, and it wasn't the best of starts.

Quarter teaspoon of scrambled egg to start, and Luke spit it out right away. We were finally able to get it in his mouth, and he swallowed most of it. But not before getting it all over his hands and around his mouth. A few minutes later he had red splotches on his face (not hives, just red marks). I was very worried. The doctor felt it was a contact reaction, and we repeated the dose. This time he didn't spit out as much, but there were a couple red spots (again, not hives) that appeared then disappeared quickly. The third dose, they gave us a paper towel with soap and water to wipe off his face. He didn't spit any out from then on, but we also used the paper towel to clean his hands and face, and the splotches never appeared.

The next 4 hours went by without any issues. Luke didn't care for the eggs (I wouldn't have either - prepared without any seasoning or milk, and more cold than warm by that point). But he was a trooper and ate what we gave him, and didn't have any other reaction at all.

His doctor felt that the red splotches were just a matter of his super sensitive skin acting up. He's having a lot of eczema and dry skin issues now, and was already a little rashy on his belly from being in the pool on Sunday. If he had any other sign of a reaction they would have stopped the test, and declared it a fail. But all vitals (they took his blood pressure following every dose) were good, and no hives, vomiting, swelling, coughing, trouble breathing, etc.

He has to stay away from eggs for the next 2 days to be sure there isn't a delayed reaction. But otherwise, we have a green light for egg! We'll be doing the peanut challenge in mid-August.

Homeschool

2011-07-20T11:58:00.000-04:00

My husband and I have made the decision to home school Cody this year for kindergarten. I had been planning to do Tot School with Luke this fall as a supplement to the two day a week preschool program that he will be enrolled in. Because of that I have spent a lot of time on Carissa's website (which is awesome, unbelievable amount of information provided there!) and various other homeschooling websites.

I first started thinking about homeschooling Cody when I became frustrated in finding a school for him to attend kindergarten. I have a few issues with our public school, one of which is that it is full day kindergarten. I do not agree with a full day program for five year olds, and especially mine in particular. I just can't picture Cody spending 7 hours in school right now. He is very active, and his preschool teacher warned me in the spring that his kindergarten teacher may view him as a "pain" and to give his new teacher her number so that she could fill her in on what's best for Cody classroom wise.

We started looking at private schools in our area. I found only one near us that offers half day kindergarten. We toured the school, and I was shocked at how small the classroom was. My memories of kindergarten are of different stations set up, being able to go from a home center to an art center. The class was full of two tables for the kids to sit at, storage for the teacher's supplies, and a teacher's desk. Adding Cody and I in there with the children, plus teacher and teacher's aid, and the class was overcrowded. And that was just with 12 students! I had a hard time picturing Cody doing well in that setting, even for just four hours a day. I was also disappointed that although the school is part of a church, religion is not included in the curriculum. Christmas is not celebrated. The Pledge of Allegiance is not said. While I wasn't looking for a full Christian based education, I was hoping to find one where it was included (similar to the preschool he went to last year).

All of the other private schools in our area are full day kindergarten.

After that I resigned myself to sending him to our local public school, although the full day program still bothered me. But the longer I thought about it, and the more I found out about our school (i.e. it is a "hard to staff" school), the more uncomfortable I was with it. Other issues dealing with academics added to my feelings.

It was then that I stumbled across Five in a Row, a literature based curriculum for grades K-3. It covers literature, language arts, geography, history, science and math. All you have to add in is more math and phonics.

I read and read and read everything that I could find. Could I really do this? I have a college education, but don't have a college degree. Could I teach him math, my weakest subject? How will I keep him socialized? How will I teach him while a very loud two year old is with us? I found that all of these are typical questions, and I had no trouble finding the answers. Each answer made me feel more confident that I could in fact do this. Books from the library have been incredibly helpful. Blogs even more helpful. I will soon be compiling a list of the resources that helped me.

I have my Notice of Intent ready to be mailed off to our school board. I have purchased a curriculum for kindergarten. I'm working on learning what Cody knows, and needs to know, before we officially start kindergarten. I'm learning that his preschool failed to teach him things that they should have, which has been a very disappointing discovery.

My biggest concern is that I won't be getting the one on one time with Luke that I had been looking forward to while Cody was in school. But I'm committed to making sure that each boy receives one on one time with me. It is also my hope that being around us while I'm teaching Cody will help Luke develop more language and begin learning more.

Child Find Evaluation

2011-07-20T08:35:00.001-04:00

Or should I say "evaluation". Last week Child Find, which is the school age version of Early Intervention, came out to evaluate Luke to determine if he's eligible for services with their program once he turns three in the fall. I was expecting the evaluation to be similar to the one he received by EI last fall. When they came out for theirs, there was a team of three people. His service coordinator and two different therapists. Once it was determined he was eligible through that meeting, we went to their facility for further evaluation, again with three people, to determine what services he would receive.

Well, I was totally wrong. One person came. She sat in our living room, very minimal interaction with Luke. Brought out a few toys for him to play with. Remarked on how smart he was a couple of times. And within 30 minutes, was done. During her "evaluation", a couple things were brought up that didn't make me very happy...

1. An apraxia diagnosis wouldn't get him "more or less" assistance from Child Find.

2. He will more than likely get a resource teacher within his preschool instead of a speech therapist.

Ok, why in the world would a neurological disorder NOT get a child more services? A speech therapist familiar with it? And I would certainly hope that it wouldn't get him LESS assistance.

And why would someone with a severe speech delay like Luke just get a resource teacher? Also, when we were talking about his preschool, I mentioned that someone (who happens to be his current speech therapist) said that a certain resource teacher at that particular school is wonderful. This seemed to irritate the woman, and she said there is more than one resource teacher, and that the one I mentioned has a full caseload and wouldn't be assigned to Luke.

I discussed all of this with his current ST (who works for Early Intervention and is familiar with Child Find). She was rather disgusted for a few reasons. The first being the lack of a full evaluation. The second being the woman that came out to "evaluate" him is a resource teacher herself, she isn't qualified to make a speech assessment (something that wasn't mentioned before or during the "evaluation"). The third being that there isn't going to be a more thorough second evaluation. According to the woman, there will be a meeting to determine if he's eligible for services. Then we'll jump right to the IEP meeting, which is what sets the services that he will receive from the county. And finally, that it has already been mentioned that he will only receive a resource teacher. Luke needs, and deserves, more than that.

According to the ST, there is a serious lack of consistency within our county's Child Find. One child with similar speech issues received a full, three person team, evaluation. Luke gets "evaluated" by someone that isn't even a trained speech therapist.

The ST thinks that I should take whatever resources the county offers, and look into private speech therapy (which we already have). On one hand, I want to withdraw him from Child Find. I'm not a huge fan of allowing the county to be involved in our personal lives anyway. But on the other hand, by law the county is required to help Luke and I want to hold them to that.

And finally, Luke is also in Early Intervention for Occupational Therapy for his thumb. It's not a huge part of his involvement with EI, as they only gave him an hour once every other month, and the OT that was assigned to has been very flaky about coming out (we've seen her twice since February) , but it's still an issue. The resource teacher that came out never mentioned it. I had to mention it to her, and it still wasn't discussed. It wasn't until hours later that she called and said oops, I forgot to get information about his thumb! As a famous crazy actor would say, Winning!

Apraxia - PROMPT Diagnosis

2011-07-20T08:17:00.000-04:00

As mentioned, I recently took Luke to a PROMPT therapist in our area. She also happens to be a PROMPT instructor. We received the written evaluation in the mail a few days ago, and it was a little hard to read at times. There is a lot in there about his jaw usage. Basically, he is unable to control his jaw to produce most sounds. He also doesn't consistently use his lips during speech. Which is why "bye" comes out as "da".

Luke presents with significant motor speech control difficulties with secondary speech/language delay resulting in very limited verbal communication skills.

While his language system appears to be intact and cognitive skills appear strong, expressive language skills are severely delayed, related directly to his lack of speech motor control.

Therefore, it is strongly recommended that Luke participate in speech therapy sessions for at least one hour per week with a PROMPT trained speech language pathologist.

And finally...

Luke has parents who are fully invested in his development.

The paragraphs (and there was a lot more than I shared) about what is causing his speech delay made me cry. Hasn't he been through enough?

It makes me angry that we drove all the way to Charlottesville, and spent a lot of money, to see a developmental pediatrician that couldn't bother to spend more than 10 minutes with him. His biggest observation was that Luke's cognitive skills were fine, and that there were no signs of autism. Well DUH. I KNEW that. That knowledge doesn't fix the problem that he does have though!

The reason the wait list for the majority of developmental pediatricians is so long is that so few of them take the time to really evaluate a child. A child with possible neurological problems doesn't need a 10 minute evaluation. They need a thorough one.

Apraxia - Insurance and Diagnosis

2011-07-20T08:01:00.000-04:00

My feeling at the moment is that I need to do something to help Luke NOW.

Many people have said to me, so and so didn't talk until they were {insert age here}. Einstein was a late talker. His big brother is talking for him. He'll talk when he's ready. I know that they're trying to make me feel better, but I'm at the point where I don't want to hear it. I'm his mom, I want to fix it. I would go bankrupt and sell every single possession of ours if all the money we could possibly pay would make things right for him. Because my mama's instinct tells me that something isn't right, that we will need to do something to help him.

Insert my desire to find private speech therapy for him. Kids with apraxia don't respond to traditional speech therapy. That's because apraxia isn't a developmental delay. From Medterms;

A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands. Children with apraxia can be helped significantly with intensive speech therapy.

And this of course means that the typical Early Intervention speech therapy will not help him to the extent that he needs.

It also means that the people that insist on saying to him "t-t-t-truck" can s-s-s-stop. Seriously, please stop. I'm not sure you'd want to teach any kid with a speech delay to say "t-t-t-truck" instead of truck anyway, I just don't get it.

A few weeks ago we met with a wonderful PROMPT therapist/instructor who evaluated Luke. She felt that he would benefit from that type of therapy, and wanted us to come once a week.

Enter insurance issues. We are going to have a new plan the first of August, and reading through the policy requires a lot of patience. Essentially it says that a child without a diagnosis, of a disorder such as apraxia, is not eligible for speech therapy benefits. In order for insurance to cover Luke's speech therapy, we need a diagnosis beyond developmental delay. We've already been to one developmental pediatrician, who after 10 minutes (most of which was spent talking to me) said "possible apraxia". I'm not an insurance expert, but I'm going to bet that "possible" won't float the insurance company's boat enough to help us out.

So I contacted the PROMPT therapist, and she recommended a developmental pediatrician in our general area. First available appointment? Early December (awesome). Appointment length? Two hours (awesome again, but this time not a sarcastic awesome). Cost? $570 (thud! - the sound of me hitting the floor). Even better? He doesn't take insurance (sarcastic awesome again). I made the appointment anyway, and we'll just see what happens. My mantra is, whatever it takes.

Until then, the PROMPT therapist has agreed to see Luke once a week for 45 minutes starting in September, knowing that it may or may not continue, depending on how much we can afford and what insurance decides to do with us. If we get the diagnosis, our insurance coverage for speech therapy will be amazing. Much love to the wonderful people at UPS for providing awesome health insurance benefits. Going from our over $500 a month with a $5000 deductible plan that didn't cover much to the plan we'll have with UPS is like willing the lotto.

It's going to be a journey, but it's worth it.

Blood Test Results and Food Challenge

2011-07-12T10:38:00.000-04:00

We received some exciting news yesterday. The results are back from the blood test that we did for peanuts, tree nuts and egg, and they were pretty amazing!

Egg is down to 0.72, and peanuts were down to less than 0.35, which is considered NEGATIVE!

Luke's numbers were always relatively low, always in the moderate level range (which runs from 0.71-3.50).

In March 2010, following Luke's anaphylactic reaction to peanut butter, his number for peanut was 2.76.

In October 2010, Luke was tested for Egg White, Sesame Seed, Crab and Shrimp.

Crab and Shrimp were both <0.35 Sesame was 0.82 (and he went on to pass an IOFC for sesame a month later)

Egg White was 1.55 - at the time the allergist wanted to do an IOFC for baked egg, but a skin prick test showed a large wheel so the doctor decided to hold off.

I was (and still am) in shock. I'm being cautiously optimistic. On July 26th we will be taking Luke to the allergist's office for an in office food challenge (IOFC) for egg. Assuming all goes well that day, we'll then schedule the IOFC for peanut.

It's amazing to think that we could have gone from a horrible reaction like the peanut reaction to having possibly outgrown it in less than 18 months.

Obviously we won't know for sure until an IOFC is done, as any reaction trumps blood test results. Blood test results don't necessarily predict the severity of an allergy. Some kids like Luke can have low numbers, but have a near fatal reaction. Others can have super high numbers (the results can come back higher than 100), and never react. Because of this I'm trying to not get too excited. But I obviously have hope that my prayers have been answered, and that Luke won't have to deal with allergies for his entire life. The thoughts of not worrying about him being out of my sight, him being able to enjoy birthday parties and trips to an ice cream parlor, among all of the other things every kid should be able to enjoy, are hard to resist right now.

An Update {beach + speech} + Visit with the Allergist

2011-06-24T21:16:00.000-04:00

Wow, it's been awhile. The days have been flying by since Cody got out of school. We left the following Friday for the beach, and spent a week in Garden City, SC. We rented a townhouse on the beach, and it was amazing. A week of walking out of the garage, going a few steps, and plopping down on the sand for a few hours of water + sand fun. We were within walking distance of the pier and arcades, so Cody made sure he was able to visit one or the other just about every morning that we were there. Both boys had a great time. I can definitely see them being little beach boys!

A crabby friend we met at the beach

One of the favorite afternoon past times on the balcony

Luke's speech therapy hasn't had many changes. Next Friday we are meeting with his therapist and the service coordinator, and the therapist is asking for us to receive one hour, once a week, instead of the 30 minutes once a week that we're getting now. The 30 minutes just goes by way too fast. I'm hoping once we move to an hour we'll start seeing more changes. He does have some new words. He says nah now for no. He can say "ah, ah, ah, HOO!" for sneezing (Cody taught him that one!). He'll say pop when he's popping bubbles. Various words like that. His therapist has said he's a puzzle. She says he still shows some signs of apraxia, but sometimes he does things that aren't typical for apraxia. Because of that, I have made an appointment for him to have a thorough evaluation done by a private speech therapy company that specializes in apraixa and the PROMPT therapy style that works so well with apraxia. That will happen on the 30th. I really wanted to have the eval done before his evaluation with the county's Child Find program (which is where it will be determined if he qualifies for help through the school system once he turns 3, and if he does qualify, what kind of help he would receive). Child Find is dragging their feet on scheduling his eval, so it looks like my wish will come true.

Luke saw his allergist this week. I've said it before, and I'll say it again...I love her. She's just one of those amazing doctors that you feel comfortable with. The visit was mostly because I needed her to fill out a form for his preschool so they will keep an Epi Pen on hand for him. I also wanted to speak with her about delayed food allergies, and if they could play a role in the failure to thrive, plus a couple other issues - she doesn't think they do. I also asked her if we could do his blood work in July instead of August, when he has other blood work done. She said yes, so in July we will be drawing blood to test his peanut, tree nut and egg IgE numbers. She mentioned we may do an in office food challenge for egg if the numbers have gone down any. Not too sure how I feel about that, so we'll see.

Finally, Luke's pulmonologist has taken him off of his inhaler for the next 2 months! He'll go back on it for a month before seeing her in September, and the hope is that there won't be any difference between when he's on it, compared to when he's off, and we'll take him off indefinitely. His last dosage was 10 days ago, and so far so good!

Also, I am experimenting with following along with 1+1+1=1 and their Tot School ideas. We did a unit this week for the letter Jj (because it was ocean related, and the boys are still excited about the beach trip), and it went pretty well. Next week we will try the Aa unit, and I hope to do a new letter each week. If it goes well, I will be posting about it here.

My Baby is Growing Up

2011-05-23T21:37:00.000-04:00

Today was Cody's last day of preschool.

It seems like just yesterday that

... the little man and I met for the first time

{true story-Cody was screaming as you can see in the picture. Right after this was taken, I said, "it's ok Cody". He immediately stopped crying, and just stared at me. Sweetest moment of my entire life}

...he turned one

...two

...became a big brother

...turned three

...four

...and five

Time goes by way too fast. I'm looking forward to a fun summer with my boys, but my hope is that the days go by slowwwly.

Recipe Roundup - Nut and Egg Free

2011-05-17T22:25:00.001-04:00

If someone were to ask me if there was a positive behind becoming a food allergy mom, I would tell them that the one positive for me is finding a new joy of cooking. I've always enjoyed cooking, but it was never something that I put a ton of effort into. Now though, I do a lot of looking for recipes, mostly online. I make a lot of things that I never imagined I would make. I've found a love of mincing garlic (I find it relaxing!) and making bread. There's just something satisfying about making your own food, especially knowing without a doubt that it'll be safe for my food allergy kid to eat.

I thought that I would share some of the recipes that I have made over the last couple months, that have been enjoyed here. They are all either nut and egg free, or I was able to make changes to remove egg from the recipe.

As always, please make sure that the individual ingredients that you choose are free of the allergens and/or any cross contamination risk.

Annie's Eats Soft Garlic Knots

Pay attention to her notes. The first time I didn't, and ended up with a sticky mess. The notes mention adding extra flour to go from sticky dough to tacky dough. Wonderful with a pasta dish. Or for breakfast the next morning =)

The Pioneer Woman's Comfort Meatballs

Oh my, are these good. Not only are they delish, but they don't call for egg. It's hard to find an egg free meatball recipe. This is one of the few recipes that I can't wait for the leftovers the next day, and look forward to making again very soon. This is the recipe that made me swoon over P-Dub.

Big Red Kitchen's White Castle-Like Sliders

I've never eaten at a White Castle. Around here, the only White Castle you see are in the freezer section, tiny little frozen hamburgers, and I've never tried them. Having lived in Jacksonville, FL for a couple of years though, I love Krystal Burgers, which are the same general idea. Tiny little cheese burgers, with mustard, pickle and onions. There aren't any Krystal Burgers here in VA, but this definitely hit the spot. Brought back good memories of hitting Krystal Burger after a night on Bourbon Street in New Orleans!

Annie's Eats Chicken Gyros

I don't think I've ever ordered a gyro. And I'm pretty sure that I say gyro wrong. But what drew me into this recipe was that it meant I could make homemade pita bread (recipe included in the note section). Little round pieces of bread heaven.

Pioneer Woman's Cajun Chicken Pasta

I made this for Mardi Gras this year, and fell in love. Well, at least I did after the smoke cleared. Be prepared to open some windows and get the ceiling fans moving before you make this. But it's worth it. Laissez les bon temps rouler!

Fat Tire® Braised Carnitas Tacos with Fat Tire® Chavelas O.M.G. First, I don't usually say OMG. Second, I don't normally get this excited about a meat dish. But this was amazing. I couldn't find Fat Tire Ale, so I went with good old Budweiser American Ale. It takes awhile to cook (though my oven time was only 2.5 hours, so less than stated in the recipe), but there's a good bit of downtime while it's cooking too. And it's so worth it. Had it with tortillas the first night, slider buns the next.

And to finish with something sweet...

Smitten Kitchen's Homemade Oreos

The first couple times I made these I used Ener-G egg replacer, and they turned out great. The last time I made them though, I used applesauce in place of the egg. I don't know if I used too much or what, but the cookies spread a LOT and didn't get as crisp as the other batches. Still good, just a little too soft. So I'll definitely stick with the egg replacer from now on!

Sometimes Things Happen for a Reason

2011-05-15T22:28:00.000-04:00

Last night I did a search for "apraxia blogs". The first several results were apraxia pages that I have seen in the past. One though was a personal blog, a mama with a 5 year old daughter that was diagnosed with apraxia. Her post really caught my attention, because it showed a video of her daughter saying some words. Although her daughter is a few years older than Luke, I noticed some similarity between her and Luke.

The other thing that caught my attention was that she mentioned Loyola's Speech-Language Pathology Clinic. Loyola is located in Baltimore, MD, but it is within driving distance for us, so that was exciting news.

Even more exciting though was learning that the mama lives in the same general area as us! I was able to talk to her some though Facebook, and she gave me some recommendations for having Luke evaluated by a non-Early Intervention Speech Language Pathologist, that is trained in PROMPT. So I will be calling tomorrow to make an appointment with them.

It's crazy to me that I went from being completely lost as to where to go next, to stumbling across a blog entry from a year ago, where the person is not only dealing with a similar language delay, but is also local.

Developmental Pediatrician Update

2011-05-12T15:25:00.000-04:00

Yesterday's appointment went well. My mom was able to come with us, which was a huge help. We got there around 10:30am after a 2 hour drive, and I was pleased to find that the Children's Center was well equipped for kids that have to wait around for awhile. Adjacent to the waiting room there was a HUGE children's play area. Train tables, books, art center, doll houses, castle the kids could climb around in. There was even a lady playing the guitar. So while Luke and I saw the doctor, my mom and Cody stayed out there to enjoy the fun.

The appointment mostly consisted of the nurse asking me 101 questions about Luke's health history. Thankfully I was smart enough to type everything up the night before, because I would have forgotten a few things otherwise. It's amazing how easily your mind can go blank when you least want it to.

Once we were done with that, the doctor came in. He had Luke do a few puzzles (which Luke breezed through - the doctor remarked at how intelligent he is), and asked me a few more questions. He said he wasn't concerned with Luke's height, since my husband and I are both short. He is concerned with his weight though, he says Luke is much too lean for his height. He gave us a list of ideas for pushing high calories, so that is our mission.

Then he went on to ask me if Luke's speech therapist has ever mentioned Apraxia. She didn't, but I did ask her about it. I've been reading about Childhood Apraxia of Speech for a few weeks now. I stumbled across it online one night, and to me it describes Luke very well. When I asked his ST about it, she said there weren't any "clear" signs, but that there are some signs. 2.5 is young for diagnosing it.

Anyway, the developmental pediatrician feels that Luke has Apraxia. I wasn't surprised, because as I mentioned, I've been wondering about it for awhile. He will be sending me a letter with his diagnosis and recommendations in it, and my hope is that it will help us to get more hours from Early Intervention for Luke's speech therapy.

It's funny, because leaving the doctor's office the apraxia label didn't phase me. Once I got home thogh, it hit me hard. Apraxia is a neurological issue, instead of a developmental for plain old speech delays. Some kids have it so severely that they don't talk for quite a long time. Some are in speech therapy throughout their childhood. And for some it leads to other learning disabilities down the road. Luke's doesn't appear to be severe, because he occasionally picks up a new word. But the thought of him having one more thing to struggle through is upsetting.

I spent a good part of yesterday afternoon and evening thinking about things. Will Luke learn to talk easily with the new ST approach? Or will I still be hoping for a conversation with him when he starts Kindergarten? It made me wonder if I can do for Luke everything that he will need. Will I be driven enough to make sure that he gets what he deserves from Early Intervention, and then the school system when he transitions? Can I be the loud mama that he needs me to be, to speak for him? My conclusion was, you better believe it.

Developmental Pediatrician

2011-05-10T16:19:00.000-04:00

Got word a little while ago that Luke's appointment with the Developmental Pediatrician at UVA's Children's Hospital has been moved up to tomorrow! I'm a little nervous, and stressing a little over making sure I have all his info together, but I'm also excited about getting this ball rolling.

Craft Hope + Easter T's

2011-04-22T15:34:00.001-04:00

I first learned of Craft Hope through one of my favorite blogs, The Macs (and if you haven't checked out The Macs, please do - she's one amazing mama). Back then she posted about Craft Hope helping out with Conkerr Cancer's Pillowcase Drive for children with cancer. I've since followed Craft Hope, and they recently announced their latest project, Project 12:: Orphan Outreach.

For Project 12, we are partnering with Orphan Outreach and sending them with a little love to take to Russia. This time we will be making bracelets for them to pass out to kids. Bracelets are a huge hit with kids of all ages — hemp bracelets or beaded bracelets. They are going on a trip in August and have asked us to collect bracelets for them.

I'm going to join in on this project, and have gotten a few bracelets done already, using supplies that I already had on hand. Plain metal bangles + scrap ribbon + charms = these cute little things...

I'm planning to make more - the deadline is June 15th so I have a little time.

And of course with Easter being this weekend, I had to make a holiday themed shirt for the boys. Because I'm a nerd like that.

I found the printable template here at Craft Buds.

Happy Easter everyone!

Dealing with Others {speech delay}

2011-04-21T17:35:00.001-04:00

The other day my boys and I went to the playground to burn off some energy. At one point, a lady was nice enough to help Luke down from the playground equipment before I could get to him. I thanked her, and she asked me how old he was. I told her, and asked how old her daughter was (about a year younger than Luke). Then Luke started getting excited, pointing at her daughter. I think it was because she was crossing the bridge that scares him. He did his usual squealing and pointing. The mom stared at him. And stared, and stared. I just said, yes Luke, it's a little girl. Can you say hi? The mom never said anything else to me, but walked around to the other side of the playground, and continued to stare at him. It really upset me, and I really wanted to yell at her that staring isn't nice, and there's nothing wrong with him. Then a small part of me wanted to drop kick her.

Today we went to Toys R Us, and of course Luke was one excited little boy. TOYS! EVERYWHERE! SQUEEEEEEEEE! =) Luke did his usual very loud sounds, and an employee stopped to talk to us. Then he said, "he sounds like an alarm going off". Gee, thanks. And you look like a dork, but I'm not going to be rude and say that out loud. Sheesh.

It's getting harder to tell people how old he is. People are usually shocked, between his size and speech ability, to hear that he's 2 and a half. I'm seriously considering lying about his age, so I don't have to deal with the "oh wow"s. Or maybe I need to work on what to say to someone that's as rude as the lady at the park was. Or work on my drop kicking skills (my personal favorite).

I just don't get it. When Cody was little, he was way ahead of most milestones. But I would have never reacted the way that I've experienced people reacting to Luke. All kids are different. And that doesn't make one child better than the other. And it certainly doesn't warrant rude stares or idiotic comments.

Organizing Pictures + A Picture Craft

2011-04-19T17:44:00.002-04:00

When Cody was little I had a picture system that worked well for me. The last day of each month, I uploaded all the pictures from that month to either Snapfish or Shutterfly, and printed them. When they came in the mail a few days later, I immediately put them in a photo album. That system went out the window right around the time Luke was born, and I'm currently a little over a year behind with the photo albums, and 8 or 9 months behind with printing. I have them in nice, neat stacks by date though! Someday I'll get caught up.

The other day, I went through some of the portraits we've had done by pro photographers since Luke was born, and I picked out several to finally frame. One was easy, I had a nice frame to hold several. But then I was faced with a frame that I didn't really care for. Just not my style.

So I took it apart, and spray painted it.

Once that dried, I used double sided tape to attach some cute scrapbook paper to the insert that came with the frame. Attached some pictures with more double sided tape. And voila! A cute, funky, frame for my boys and me. Little Luke is 3 months old here, and it was right around Cody's 3rd birthday. Such babies!

Photos by the amazing Nicole Benitez

Words and Test Results

2011-04-16T14:18:00.000-04:00

Luke started saying dish (or maybe this? it's hard to tell) a few days ago. Two days ago he said eat. I was strapping him into his highchair for dinner, and he said "eat". I said, "what did you say?". He started poking me in the arm saying "eat, eat, eat, eat". It was awesome. He hasn't said it since though. He'll still say dish/this when you prompt him, most of the time anyway.

For speech therapy this week, she wants us to work on getting him to say up and down, and to not jump to do things for him unless he verbalizes what he wants. For example, if something gets stuck and he can't get it out, we're to try and get him to say help, or down. It doesn't have to be the entire word, something approximate works. If he doesn't, then we're to move him on to something else. We're also supposed to help him with the correct sounds for some of the words that he says. He has been pointing at our dog, and other dogs, and saying "da". She wants us to emphasize the "G" sound.

We got the blood test results back, and most came back normal. One came back abnormal, his lymphocyte levels. Normal is 2000-8000, his was over 9700. We're to take him back to re-test in two weeks, and if they're still abnormal, they'll send us to a hematologist.

Bad News, Good News

2011-04-10T14:04:00.000-04:00

BAD NEWS:

National Children's Hospital, our local Children's center, has an EIGHT month waiting list to see a developmental pediatrician.

GOOD NEWS:

Children's Hospital of the King's Daughters had an opening for mid May! UVA Children's had an opening for mid June. Luke has an appointment at both. He also has an appointment at National in December, just in case we need it for whatever reason.

BAD NEWS:

I can't get Luke to say some of his usual words this weekend.

GOOD NEWS:

Luke said "Tom" and "Papa" this weekend!

Height and Weight Check

2011-04-05T22:53:00.000-04:00

Today was a scheduled height and weight check for Luke.

We went through this with Cody. Around the time Cody turned 9 months he dropped from 50% for height and weight down to around 10-15%. He stayed there for awhile, then finally caught back up around 24 months. Well, he's still on the smaller side, but his clothing size matches his age, so I'm happy with it.

Luke has been around 5% for both height and weight for awhile now. Almost since the beginning. But he followed his own curve, so the doctor wasn't too worried, as long as he stayed on that curve.

Going into the appointment I was prepared for trouble. I knew Luke hadn't gained or grown much, if any. 12&18 month pants still fall off of him. "Luke, let me fix your pants" is heard about 20 times a day in our house. I have a box full of 24 month summer clothes that won't be worn anytime soon. Today I went digging for his 18 month stuff that had been put in storage last year.

He's fallen off of the curve, he's down to around 1% for both. He lost a pound since December, and has only grown 1" since May 2010. Granted, I'm not 100% confident in their measurements. The nurses don't spend a whole lot of time trying to get an accurate measurement. For example today he was a half inch shorter than he was in November. But, whatever. Close enough I guess.

His file now says "Failure To Thrive". Stab me in the heart why don't you.

We also went over Luke's speech therapy progress. She was very concerned when I told her that he has words that he once said, but won't say anymore.

Excerpt from his baby book...

12m - baba (bottle), mama, dada, hi - I don't remember him saying hi, but he must have since I wrote it down. Haven't heard it anytime recently, that's for sure.

15m - outside, what's that, tasha - He occasionally says what's that, not super clear, but clear enough for me to tell. Tasha and outside don't happen.

2 years - uh oh, I did it, touch down, down, all done, mine, roar, dada, mama, baba, oh wow - Uh oh happens sometimes, I did it occasionally, but not nearly as often or as clear as he did back in November. Touchdown, all done we never hear, and he won't repeat when we ask him to. Down he doesn't say, but makes a "da" sound. He roars when we ask him what a lion says, oh wow occasionally.

And those are just the ones I'd written down in the book. It makes me sad to see that his "first word" line was never filled out, because beside mama and dada, I honestly don't know what it was.

She was also concerned when I told her that he only has a handful of words (mama, dada, oh, dee (Cody), yeah, more) that he says clearly and regularly.

She wants him to go through genetic testing due to the number of issues that he has had (positional clubfeet at birth, torticollis at birth, right thumb isn't used properly since birth, asthma, allergies, brief issue with immune deficiency, gross motor delay, fine motor delay, speech delay). I take him for blood work tomorrow, fairly basic type stuff. I need to find a developmental pediatrician. His doctor mentioned Autism (speech therapist feels he has no signs), Asperger's, diabetes. Not saying he has those, but just throwing them out (because I need more stress of course).

The developmental pediatrician isn't proving to be easy. After going through a couple of allergist duds, and an orthopedist dud, I'm wary of just randomly choosing a doctor. So I'm driving myself nuts trying to find recommendations. I just want to see the same doctor recommended more than once! Hasn't happened yet. Speech therapist said she can't help, she has only heard about the "bad" ones.

So I'm looking at the various Children's Hospitals in Virginia. Children's National which has a satellite office in Fairfax. Children's of UVA, Children's of Richmond, and Children's Hospital of The King's Daughters in the Norfolk area (which happens to be at war with my insurance company, awesome). My plan is to call each, and see who can get him in the quickest.

My son is SMART. He has an amazing personality. Spend five minutes with him and you can see that. I want to do everything that I possibly can to make things right for him. I want him to have the future, whether it's one year or 20 years into the future, that he was meant to have.

I know I'm all over the place here, and I apologize for that. It's a pretty good example of how my mind is working right now. Which do I worry about this minute? His height/weight? Speech? Allergies? Asthma? Thumb?

I would give anything to hear my baby say hi to me. Or the ultimate, love you mommy. He expresses both non-verbally, but to hear it would just be the most amazing thing.

Reading Labels

2011-03-31T15:21:00.000-04:00

Something happened this weekend that shows the importance of reading an entire label.

While at my parents' house, Luke ate a few pieces of dried cherries before I had a chance to read the package. Once I did though, I saw that in smaller print than the rest of the package, there was a "manufactured in the same facility as" warning. Listed were a few items, including eggs and nuts.

Thankfully Luke did not react to them. But it caused some anxiety. My mom blamed herself for not reading the whole label, and I blamed myself for not double checking it.

Some labels are very busy and provide lots of different information. This can make it easy to gloss over important information. But it's also why it's important to read every single sentence to make sure it is safe.

Menu Plan Monday - Egg and Nut Free Style

2011-03-21T15:55:00.000-04:00

My Allergy-Free Cooking Inspiration

I'm linking up today with Org Junkie's Menu Plan Monday. I've found that planning ahead for the week makes a huge impact on my stress level =) Monday is usually Meatless Monday around here, but I wasn't able to get to the grocery store today, so we'll be celebrating Meatless Wednesday this week instead!

My menu plans are always nut and egg free. When needed, I omit egg from some recipes and either do without, or replace with something appropriate. Obviously there are some recipes that omitting egg wouldn't work for, so we just avoid those. There are so many other yummy recipes out there, that it isn't an issue. Focus on what you can have, instead of what you can't!

Monday: Pioneer Woman's Bowtie Pasta (can I just say how much I LOVE Pioneer Woman? I haven't been let down by a recipe of hers yet) and Annie's Eats' Soft Garlic Knots

Tuesday: Chicken Carne Asada Tacos

Wednesday: Pasta ai Quattro Formagg (yes, another PW recipe!) with asparagus

Thursday: Bacon Potato Chowder with Grilled Cheese

Friday: Mongolian Beef with rice and steamed broccoli

Saturday: Leftovers

Sunday: Weekly dinner with the Grandparents!

Food Allergy Frustrations

2011-03-12T18:04:00.002-05:00

1. The parents in Florida who have been protesting a six year old's right to a safe education has me going through a mixture of emotions, mostly anger toward them, sadness for the girl who is in the middle of it all, and fear for my own son, knowing that he will one day be heading off to school himself. Learn more about this story here.

2. Wegmans, how unhappy I am with you right now. Wegmans is a grocery store that is relatively new to my area. Well, it's been here a couple years now I guess, but I've only been shopping there for the last few months. Last summer, when I first started realizing that Luke might have issues with egg, I purchased Wegman's brand of pasta. It was labeled as vegan, meaning egg and dairy free. For the first time in his life, he would eat pasta. He gobbled that stuff up! Still does. Even though I loved that he loved their pasta, it took me awhile to really like shopping there. It's still not a favorite place, but I've grown to love their labeling practices, and that they offer foods, such as pasta, that I can't find egg or nut free elsewhere.

Earlier this week, I read a message from someone on a message board that their Wegmans pasta was no longer egg free. My heart sank, but I crossed my fingers that our store wouldn't be the same. I went there this morning with the intention of buying as much egg free pasta that I could. As soon as I saw the shelf though, I knew I was in trouble. The boxes look completely different. Sure enough, the label now reads "may contain egg". Their more expensive line of store brand pasta ($1.70 a box) is still labeled as vegan. The line is of course, more expensive, but is also more limited as far as the types of pasta that is offered.

Pipe Cleaners, Colander and Fine Motor Skills

2011-03-09T15:42:00.002-05:00

Today we did a little activity to work on Luke's fine motor skills. Big brother even got into it! Both boys had a blast with this activity. The supplies are super easy - colander and pipe cleaners.

This picture shows how he went from holding the opposite end of the pipe cleaner, to figuring out that the closer he held it to the colander, the more control he had over it. I was pretty proud of him :) Not only that, but he was using both hands, which is a major goal in his occupational therapy.

Once, Twice, Three Times Checked

2011-03-07T18:14:00.003-05:00

Back when we first learned of Luke's peanut allergy, I read something on an allergy message board that stuck with me. Check all food items three times before giving them to your food allergy child.

1. In the store, before you buy the item.

2. At home, as you're putting the item away.

3. At home, before you serve the item.

This has done me well over the last year. There were many times that I didn't buy something because of an allergy statement. There were times that I got home, looked at the item, and realized I forgot to check in the store.

Maybe being at this for a year has made me a little lax, but tonight I found two items in my pantry (well, one in my fridge that had already been USED), that have peanut, treenut and egg warnings on them. Thank goodness for my 3 time checking rule.

The first was a container of Rachael Ray Beef Stock. Dairy, egg, tree nuts, wheat, peanuts, soybeans, fish and shellfish are mentioned as possibly also being processed in the same facility as the beef stock. I suspect this is a case of hyper labeling, otherwise known as CYA (cover your ass). But, I don't take any risks.

The second was a container of free range chicken broth from Trader Joe's. I used this container last week, in something that Luke didn't eat. After reading the statement on RR's stock, I checked. This one says made on equipment shared with wheat, milk, eggs, tree nuts and shellfish. My goal for tonight is to go through my pantry and double check everything, since these two slipped past me.

Finally, Friday night we ordered Domino's pizza. Cody wanted his usual cheesy bread sticks. I wanted to get something that would provide more food for them, since they usually run out. I almost ordered cheese pizza with white sauce, as Cody won't eat the red pizza sauce. At the last second I checked their Allergen Warnings. Sure enough, the white sauce contains egg. I've checked the chart before, and my memory was that everything but the Lava Cakes (made in the same facility as peanuts/tree nuts) and creamy dressings (egg) were safe. So either I never noticed the egg in white sauce, or it has changed.

Lesson learned - check every.single.time!

Reflections and Clinical Studies

2011-03-05T22:15:00.002-05:00

A year ago today our lives changed drastically when Luke had his anaphylactic reaction to peanuts. I've done some thinking lately about how our lives have changed. Some for the not so good, some for the good.

1. Things that used to be a non-issue, are now an issue. No longer can we walk into a restaurant, any restaurant, and order without worry. Eating out has to be planned ahead. Research done online, calls made ahead of time to check on the safety of food prep. And if necessary, a meal packed and brought with us to feed Luke if there are no safe options. Play dates, birthday parties, family gatherings all come with a fair amount of stress, planning, and general unease.

2. Because of number one, a good thing has come about. I have discovered that I can make pretty much anything we want at home, from scratch. I've learned how much fun it is to look for recipes and try them out. I've become comfortable with baking from scratch, and making my own bread products. I've learned how to exchange an unsafe ingredient for a safe one.

3. I've become a more thoughtful person. When we took Cody to the Monster Truck Jam for his birthday, it was the first time my husband and I had been somewhere special with just Cody in quite awhile. While standing in line waiting to buy concessions, I told him he could have whatever he wanted. I told him he could even get a package of peanuts if he desired. As soon as those words came out, I was thinking, what if a peanut allergic child is sitting near us? How would I feel if Luke was here and someone sat next to us eating peanuts? This isn't something I would have considered in the past, but I do now, and I was thankful that Cody didn't decide on the bag of peanuts. There are other instances - I'm careful that Luke doesn't leave behind any fallen Goldfish crackers. I would hate for a dairy or wheat allergic child to find one and pop it in his mouth before his mom could stop him.

4. I have met some wonderful people through blogs and message boards such as Kids with Food Allergies. And through them I've learned more about food allergies, and how to live with them, than I ever thought that I would.

5. I have learned that some people will stand behind you no matter what, listen to you, and not jump to assumptions. Some people however are the complete opposite.

As much as I wish that Luke didn't have food allergies, I am thankful that we have been blessed with a wonderful allergist. I am thankful that I have the tools that I need to protect him. Hopefully this time next year I will be posting that we went a whole year without another serious reaction.

Which leads me to my next topic. We are lucky enough to be fairly close to Duke University (about 5 hours). Duke is one of the to major hospitals on the East Coast that does peanut desensitization studies. Johns Hopkins University Hospital is closer, but will only take people ages 12 and older. Duke's studies typically include children over age 1. I recently found information about a current study that they are recruiting for. I was excited as I read over it. I would be more than willing to make bi-weekly trips to Duke if it meant helping Luke. Then I got to the exclusions criteria...

History of severe anaphylaxis to peanut as defined by hypoxia, hypotension, or neurological compromise (Cyanosis or SpO2 < 92% at any stage, hypotension, confusion, collapse, loss of consciousness; or incontinence)

.sigh.

The day of his peanut reaction he suffered from hypotension (defined as abnormally low blood pressure). His skin and lips took on a bluish hue, so hypoxia may have been an issue. He lost consciousness multiple times that morning. His oxygen level when we arrived in the ER was in the low 60's. Going through the various trials, it looks as though anyone that has had a serious reaction is not eligible. My plan is to contact Duke University and see if this is always the case, or if there is the possibility of something he would be eligible for.

The Tubes Are In

2011-03-04T21:25:00.002-05:00

Luke's procedure this morning to put tubes in his ears was a success. We were there at 6am for the 7am procedure. I got to wear a nifty white suit that covered me from my ankles to my neck (didn't get a picture of that, darn!), and held his hand while they put him under. He handled it much better than he did for the endoscopy last summer, so I wasn't quite as traumatized as I was back then. By the time I got the suit off, grabbed the stroller from his room, and took a potty break, the doctor was out telling me they were done. Ten minutes later I was led back to find him wooing the nurses, and 20 minutes later we were in the car heading home. Now we just need to wait and see how much of a difference it will make for him.

A Little Bit Girly {crafty}

2011-03-01T13:29:00.003-05:00

A friend of mine is getting close to the end of her pregnancy with a little princess, and I jumped at the chance to be able to make something girly for her.

Now, my crafty skills are still forming, so I decided to go with something fairly simple. Which was hard to do, after looking around different blogs for some girly inspiration. There is just SO much cuteness out there for girls.

The first one I decided to make was straight from I Am Momma, Hear Me Roar. I fell in love with this Whimsical Tree design when I first watched the video she made for freezer paper stenciling. The tree design came from Picnik. Next time I would make the letters a little bigger for ease of use, but other than that, I was happy with it =)

The second one I made is based on a shirt that I bought awhile back for Luke. I wanted to see if I could re-create something similar, and I was pretty happy with the outcome.

I used Picnik to create a lower case t in a font that I liked and thought would work well. Using that print out as a template, I cut the letter out in felt that coordinated with the cute little onesie that I picked up at Walmart.

Stuck the letter onto some Heat n' Bond, and then stuck that onto the shirt. This was mostly to make sewing a little easier, because sewing around straight pins irritates me for some reason =)

I used a tiny stitch setting on my machine, and sewed all around. Once that was done, I grabbed some white embroidery thread, and an embroidery needle, and got to work. The only change I would make here would be to use longer stitches all around. But that was it, easy peasy! And cute!

Linking up to...

Doctor Appointment Round-up {Pulmonologist & ENT} and Dairy Free

2011-02-19T14:37:00.000-05:00

This past week was a little busy for us as Luke had Speech Therapy on Monday, a hearing test on Thursday and a routine visit to the Pulmonologist on Friday. Throw in Valentines Day, and a couple of picture perfect 70 degree days which required trips to the playground, and it was a crazy-fun-busy week.

The hearing test went so-so. He wouldn't wear the headphones, so I sat in the booth with him, and they played weird sounds over the speakers. The sounds would start out low and gradually get louder. I noticed right away that he wasn't reacting to the lower sounds, and only turned to find where they were coming from when they got to almost full volume. She measured the level of pressure in his ears, and it was on the higher end. An hour or so later we finally got to meet with the doctor. He asked me why we were there, and I told him that early intervention said he should be tested due to the speech delay. The doctor said he was happy they did that, because Luke's hearing was below the "normal" line, and that at his age, it should be above it. He looked into his ears, and said there was lots of fluid.

He gave me two options - prescription nose spray which may reduce the amount of fluid, and help him to hear better, or tubes. I told him that Luke is on Nasonex, and has been since September, and he said he definitely recommended tubes then, because it's what he would have put him on. So Luke is scheduled to have tubes put in on March 4th. We're crossing our fingers that it helps a lot with his speech.

The pulmonologist visit went great. She was impressed that he hasn't needed albuterol in the last two months, and brought his inhaler dosage from 110 back down to 44. She also gave me a prescription for a different nose spray that has a generic, which will save us quite a bit as Nasonex is pretty expensive. Not only that, but she gave me a one month full size sample of Flovent and Nasonex. Love that office! They really are awesome.

Now on to the dairy. On Monday Luke will be taken off of Cow's milk and yogurt. This is my decision, as a one month trial to see if it helps with his delayed food allergies. Since birth Luke has had constipation, sometimes going 7-10 times a day, tiny hard pellets each time. The GI doctor put him on Miralax last summer, but it's not something I want him on indefinitely. I would love to be able to find what's causing the constipation, and eliminate it so we can get him off Miralax. So dairy is the first target, and then we'll go from there.

The biggest challenge will be making sure that he gets the vitamins, calories and fat that he needs. I'll make sure that it happens though =)