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!


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.  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!