Friday, April 22, 2011

Craft Hope + Easter T's

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!

Thursday, April 21, 2011

Dealing with Others {speech delay}

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.

Tuesday, April 19, 2011

Organizing Pictures + A Picture Craft

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

Saturday, April 16, 2011

Words and Test Results

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.

Sunday, April 10, 2011

Bad News, Good News


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


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.


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


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

Tuesday, April 5, 2011

Height and Weight Check

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.