November 10, 2012

Caleb's Happy Birthday Day

November 11th is a day to celebrate Veteren's, but it is also a day to celebrate our sweet (now) 7 year old, Caleb!  There are a lot of things to celebrate this year.

The last few years for Caleb have been so full of ups and downs and I find myself reflecting on that quite frequently, especially around important days like birthdays!  Caleb has accomplished so much this year and grown so much.  For so long we fought to have someone see his struggles and then we had to fight harder to find therapists and programs that would accept our decision to homeschool him.  While, I am seeing the areas that will continue to be a struggle for Caleb for many years to come, I am also seeing new possibilities for him.  A friend posted this on Facebook last week and I though it describes things about right.


After Lucie was born we had some sliding backwards (mostly not cooperating in therapy and at home and many sensory meltdowns), so I asked his Tae Kwon Do instructor how he was doing in class just to make sure that it wasn't happening there as well.  His words to me, "Caleb?  Caleb is doing great.  He's really starting to talk more and he has such a great memory and really keeps me on track!"  Now, this great memory of Caleb's is a frequent frustration for me because he literally remembers every word I've ever said to him, but it is coming off as a strength in other places now that his communication skills have improved.

In speech therapy, he has been graduated out of individual therapy for the time being while he participates in a social skills group to work on his social speech.  When we started, people outside our family were having a hard time understanding him and now he is doing so much better with articulation, they want us to focus on what to say for awhile (hence the social skills group).  We will have another evaluation in the spring and he will likely need additional individual work, but for now he gets a break.

The last three months he has also been working with an occupational therapist as well to work on daily living skills, including toileting, sensory work, & handling change.  This is all a work in progress, but I am feeling hopeful especially on the toileting front.  I was really starting to give up hope that this was an area he would ever take responsibility for, but he is getting close and my laundry load has gone down significantly.

Guess what?

This is all not the biggest news for this 7th birthday!  At his well child check last week, we went over some of his history and old lab results and our pediatrician had consulted with a GI to review some things.  5 years ago, when he was diagnosed with Celiac Disease we had the antibody test and the gene test done.  His antibody test was positive and he did well on the diet so that Celiac Disease was diagnosed even though the gene test was negative.  At the time they were more doing screening with the gene test than actually diagnosing.  They still can't diagnose based on a positive gene test, but they can eliminate it with a negative one.  That means Caleb does not have Celiac Disease!!

He may still have a gluten intolerance, but it could also be that his high antibodies were actually the result of some other gut issue or general health at the time (which was extremely poor).  In fact, putting him on the diet (gluten free and initially also dairy free) may have helped him heal some gut issue we didn't even know about.  The plan is to have an 8 week trial of gluten foods and then re evaluate his health and retest for antibodies after the 1st of the year.  So far he is tolerating wheat perfectly with no stomach or behavioral changes, but we can't be in the clear until after we get blood work back.  It has been such a joy to see him try new foods for the first time!   We will even enjoy gluten birthday cake tomorrow for the first time in over 5 years!

I feel like this is the beginning of a good year for my stubborn little monkey!  I'll be sure to come back and share photos tomorrow and hopefully I will have lots of other good news for him throughout the year!

1 comment:

Meredith said...

Happy birthday to Caleb! Thanks for a great update, Heidi. I can't believe the news about Celiac! How amazing to get to share wheat with him, especially in a bday cake (you know my issues with GF cakes!).

Here's to a year full of even more progress. Hurrah!