Two thumbs up

Things have been really busy so I am a week late in sharing this spectacular news. After the developmental checkup that we had a couple weeks back the doctor requested our speech therapist retest Rylan to see where he is at on the scale since he first began speech therapy. We started the test last week and he did so awesome, he went from a 74 to a 95. This was just the first part of the test but the therapist was thrilled, Rylan is doing things other kids his age are doing. She was excited to share his results with the doctor. This was perfect timing, I was in a rut of discouragement and this let me see the amazing progress he has made. We are proud of him and can’t wait to see continued progress.

The gluten free diet is still going and we have noticed Rylan having a lot more energy and acting overall happier. Could be a fluke or could be a direct result of removing this from his diet.

Either way all good news for now. This little man is growing up fast.

The G-Free Me

Rylan is spending his weekends doing research on his new lifestyle change, he agrees with most of what Elisabeth has to offer in her book about a Gluten Free diet. He is waiting patiently on the “increase immune system” benefit as he spent another few days sick. He is on a two week healthy one week sick pattern and we all are sick (pun intended) of it. We were able to stay on top of his rather high fever and keep the seizures away so that is great news.

When he got to the section about candy bars he was in complete shock, he really has a lot of options for candy bars and we all know Ry needs some fat on him.

Developmental Checkup

We had our 6 month developmental evaluation with our Gillette’s physician today. She got caught up on all of Rylan’s progress and retested him to see where he stands developmentally. She is so happy to see that he is moving in the right direction even after all the other things happening to him from a health standpoint. It was eye opening for me, I have spent so much time being in the moment with Rylan and watching his progress I have not stepped back to actually compare him to other kids his age.  I use to do this all the time when he was little before we started therapy, lately I just get so excited and focused on accomplishing the tasks at hand or assigned to us from the therapist. I don't even realize that this is something someone half his age can do, instead we do the happy dance and begin to work on the next task. This part was tough for me and made me go home and cry. He is still behind doing things at a 15 month level. It seems the things he was doing for her that I was so proud of are things a typical 1 year old masters not a 2 year old. I will still be proud and continue to live in the moment and focus on the positives . Good thing we only go through this testing every six months, it was kind of depressing. He is moving in the right direction just at a slow pace.

She is not comfortable stopping the search for a diagnosis for Rylan. As we know celiac disease is on our radar and we are changing things to accommodate, but she believes there has to be something else to explain Rylan. I never was planning on blaming all his health concerns and delays on gluten…..as much as I would like to and be done with it. So we will schedule more appointments and get more informing on his low growth hormones, enlarged liver, seizures and get additional genetic testing.

She is going to communicate with our pediatrician to provide next steps, so no rest from the doctors….I had lots of hope that we were on the home stretch.

Today is not my favorite day but the good news is there is always tomorrow and the better news is there is this adorable, lovable, happy little boy. (who loves his sister so very much)