No More Speech Therapy. . . .prayers for eye doctor appt Monday

I still can't believe our insurance company sometimes.  I know you all have your own battles with the beast.  They are willing to pay over $900 dollars for a feeding evaluation after paying over $900 for a speech evaluation but they don't want to pay $400 dollars for an office visit with out sub specialists geneticists.  Whatever!!  I will keep fighting and appealing and maybe they will eventually pay something.  Who knows!?!

The great news is that Thomas no longer needs speech therapy!!  YAY!!  In fact, he has made up for lost time and then some.  He is now above average on his receptive and expressive language.  I was SO Proud!! If you are around Thomas any now you can hear him talking in full sentences and with a wide vocabulary.  I am so thankful for great therapist, a great ENT, teaching him sign language and the time and effort it took by all to get him where he is today.  The goal is to keep his ears clear and open through tubes or anything else so that he can continue to hear well and thrive!!

I am excited about the feeding evaluation.  Thomas is so little and below any chart and his eating is not consistent.  If he could live on yogurt and fruit he would!  He avoids a lot of hard or crunchy foods.  He also will chew up some meat and then routinely spit it out.  Its quite inconsistent to me.  He loves broccoli, but then he will spit it out at times too.  The speech therapist was very interested to hear this and pushed for the feeding evaluation, which does make me happy.  Have I mentioned again how much I love all of the therapist at Children's Healthcare of Atlanta!!  That appointment is set for the beginning of October.

We will also have Thomas' 2.5 year check up in October where we will most likely get our referral to an Endocrinologist.  There is still a very good chance that Thomas' pituitary gland did not develop correctly and he has a growth hormone deficiency.  I have a mutual friend whose son is similar to Thomas in some conditions including KFS and Failure to Thrive.  She is on the same journey as us and the concern was that growth hormone replacement could cause more harm to the spine and its deformities.  But the latest specialists stated that if he needs growth hormones then he needs them and the spine is going to form how its going to form and the hormones will not impact it enough to make a difference.  That information is so valuable to us.  We will see our Pediatrician, the Endocrinologist and we have our follow up with our Pediatric Orthopedic Surgeon.  Between those three, we will decide our path for Thomas. 

Monday, August 27th we have our follow up with Thomas' Ophthalmologists.  Thomas' eyes don't seem to be holding him back much at all, take that Duane Syndrome.  Most times he looks completely normal and it seems to me most people don't notice he has an issue.  If they do see it they don't vocalize it to me.  His left eye does seem to wander a bit especially when he is getting tired.  At this six month check up we are just making sure everything looks good and his vision is still good.  I don't have an reason for concern, but I am not the expert. I will update you all after the appointment.


Your continued prayers, love and support mean more to me than you will ever know.  The appointment last week was not the best news and while I know we aren't going to always have great appointments it still takes its emotional toll on me.  I am thankful for those of you who care and give me encouraging words and remind me about the journey.  A friend wrote this to me and it inspired me to the core "Hang in there, I know you do a wonderful job of staying in the moment and enjoying with him, and that is so good, and so healthy. Day by day... things will unfold and if it is surgery down the road, all of that technology is improving, hold on to that. You are doing such a great job as his advocate and I have no doubt in your determination and wonderful mothering... breathe in and know that time is on your side Allison and we will all keep searching and sharing."

Thank you!!

Thomas is acting like a normal, active 2 year old.  He is going tee tee on the potty quite regularly but he still has lots of accidents.  Last night he peed on his brothers foot!! It was hilarious!!  He knows lots of colors, he is starting to count, we are working on letter recognition, he loves 'reading' to his big brother Tyler. . .he has started laughing a silly laugh and cracks himself up.  I can't express enough how in love I am with Thomas!!