Monday, December 26, 2011

The Progress Continues

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

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!


Friday, December 23, 2011

Special Needs

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!

Tuesday, December 20, 2011

In!

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. 

Thursday, December 15, 2011

Allergist Visit - Mystery of the Egg

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


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.

Friday, December 9, 2011

Christmas Crafts and Speech Update


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!

Tuesday, November 22, 2011

Crafting For Good

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 =)


Tuesday, November 15, 2011

Toy Story Birthday Party - Peanut and Egg Free!

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)
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)


Happy Birthday Luke

  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.










Tuesday, November 8, 2011

Apraxia - Insurance Coverage

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.

Monday, November 7, 2011

Public Service - Watch for Third Party Billers

**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?

Sunday, November 6, 2011

Field Trip #3 - National Museum of the Marine Corps

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