Ryder had his 1 year check up today. He is 20lbs and 29 .25 inches. I really love his pediatrician--Lyndy Jones at All About Kids. She is soooooo helpful and talks everything through with me no matter how long it takes or what time of the evening it is:)
He is making such great gains lately---crawling more and more, pulling himself up on the couch, cruising around the couch a little, NO BOTTLE for 3 days now--sippy cup:), eats & drinks dairy products w/out a reaction, and babbles like crazy:) I know he's saying "I love mommy and daddy and my big bros and I am a happy boy;) With all of these gains that doctor said he isn't that delayed and wouldn't be concerned yet if it wasn't for the other stuff (nystagmus, MRI...)
I am really frustrated with communication between all the doctors and myself. I have learned quick that I need to advocate for Ryder first. I know that the doctors mean well, but I also know Ryder isn't their 1st priority. We were approved by the insurance company Friday for the blood work tests needed to determine if and what type of leukodystrophy this might be. I started leaving messages on Monday to set up an appointment to get these done. After 3 messages, I got a call today from the neuro's office at 2:30. The lady who schedules appointments called them today (3rd day) because she didn't remember if she was supposed to call me or I would call her....REALLY????? She said that lady would contact me sometime today....ya---no---I asked for her # and called her after I hung up. Ryder will be getting his blood work test at the hospital tomorrow morning. I know if I'm not on top of this--no one else will be...3 days wasted and who knows how many more before she called???? I couldn't have got another appointment until Monday if I didn't talk to her today.
I've requested medical records and the minutes from the meeting at Barrows w/the neuro. I'm also waiting to hear back from Barrows medical center for an appointment to get a 2nd opinion. (Not that I have a 1st yet:) Barrows takes a long time to get into so I want to get an appointment now before the lab work comes in if I can and I'll bring it all to them.
Les talked to a neurosurgeon about Ryder's situation today. That neuro said he was shocked that doctors would be concerned over a 1 year olds MRI results. He said that myleanization isn't complete in the brain until a child is 2 years old so Ryder's brain is still forming. I was excited for a little while hoping this was the case. After talking to Lyndy Jones (PED.) she said the neuro must specialize in adults. While it is true that the brain isn't fully developed until 2, a 1 yr. old still can have an abnormal MRI and the ped neuros know what a "normal" 1 yr. old brain should look like.
Thanks for all of the prayers and support we have been receiving. I believe the prayers are keeping us strong and motivated to advocate for Ryder. We love our family and friends!!!
