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)
He is making so much progress, ( we can really see that each time we see him)he is just going to do things on his timeline. God has a plan.
ReplyDeleteLove you Kelly. Rylan has the best mommy and daddy and sister in the world. And he is such a bright spot in the lives of everyone he meets. I'm sorry it's so tough but luckily you have the strength and patience of ten women xoxo
ReplyDeleteYour family is so darling! Continued prayers for you all. You are all doing such a great job! Take care & God bless. Love, Rabbit
ReplyDeleteKelly, you guys have to be so proud of this little guy. He has made great strides this year and sounds like he will continue on! As always, I love the pictures!!!
ReplyDelete