Thomas

Dear Family and Friends,


I've been waiting for that perfect time to write, you know that time with out distractions and a little bit of quiet. It's just not happening so I'm going to just wing it ..... (FYI, it's been over a week since I started this posting!)

We saw the ENT, he sent a little telescope down Thomas' throat and found that his epiglottis is a slightly different shape and a little softer that what it would be on an adult. He said this was nothing to worry about and that he'd grow out of it. He said to do saline drops for his little snoring/snorting and see if that would help him. The ENT had no worries what-so-ever for Thomas. It was a good yet discontent feeling. (I was a bit frustrated leaving the office after spending almost 3 hours there, all four kids and I, and only about 20 minutes with the doctor himself.)

Next we saw the eye doctor. Thomas did very well with tracking objects. They dilated his little eyes and found that he has small optic nerves, worse in the left eye than the right eye with nystagmus (fast shaking movement of the eyes). The doctor said that his vision is likely affected in both eyes but more in the left eye. He called it Optic Nerve Hypoplasia and recommended and endocrinology consult to check hormone levels and an MRI to look at the brain structures since this can be associated with hormonal or brain abnormalities.

The Doctor's referral to the Endocrine Clinic stated, "Hypo pituitary" as the reason for the visit.
you can google it if you want. We'll see the endocrinologist with in the next month.

We have his MRI scheduled for August.

Tomorrow (6-9-11) we're seeing the hand specialist and geneticist. Should be good appointments.

We have been seeing a craniosacral therapist. She flies into Plano, TX from PA every couple months to see patients here. Thomas has been blessed to be able to see her.... I think anyway. She has given us a lot of info regarding Thomas, his care and his recovery as well. I really want to go into detail regarding that but am afraid it would take me weeks to get this posted so can I save that for another time? We'll be seeing her again at the beginning of August and I can't wait.

Please continue with the prayers. Rob and I both are exhausted. His work travels, Thomas appointments here in WF and down in Dallas are very tiring. The kids have always done well but are becoming less and less excited to travel to Dallas (2 hours south, one way) now since we've been doing it so often! Every time we see a doctor we're referred to another doctor! Eesh! It's been non-stop since Easter and like I said, we're feeling the effects of being emotionally and physically exhausted. By the grace of God we keep on going. Pray for perseverance on this journey. We want what's best for Thomas, for our family and to do what God asks of us. Also, please pray for safe travels and Robbie's work too. Robbie has a few courts coming up in the next few weeks and we have more trips to the big D. Thanks.

Thomas seems to be doing well. He's a very happy baby and becomes delighted every time someone comes near him to talk/play with him. I've been having trouble with getting him to nap during the day which feels ironic with all the time I spent in his first few months trying to wake him up! Now I'm taking hours to get him to sleep! He does ok at night but will still wake up at least once to eat. It's good for him to continue to get the calories.

I know I have more to report but I'll try to do better next time. I can't think of anything else right now other than the fact that behind me I have a very messy kitchen and a little boy who is waiting patiently for his yummy prunes. Yes, Thomas is eating prunes and loves them! Also, he's now blowing raspberries and rolling every which way! He also loves to push himself backwards with his feet while on his back! He's pretty fast too!

Better go, here's extra info for you if you're interested:

Here is a link and info I found online (even though the doctor told me not to look online...)


http://www.ohiolionseyeresearch.com/on_hypoplasia.htm

Optic Nerve Hypoplasia

A small and underdeveloped optic nerve. Optic nerve hypoplasia is one of the leading causes of vision loss and blindness in infants and children. Optic nerve hypoplasia occurs in the early stages of fetal development, when the eyes are forming. The optic nerve never fully develops or, once developed, dies-off and reduces in size for unknown reasons. Recent evidence suggests that ganglion cell axons, that make-up the optic nerve, are not able to grow through the optic nerve head because certain chemical messengers are not present for directional growth from the eye to the brain. Optic nerve hypoplasia is variable, and can result in only minor vision problems to complete blindness. Usually, if the infant has nystagmus the optic nerve hypoplasia is more severe and vision is very much reduced. If the infant does not have nystagmus, the likelihood for significant vision loss in less. All infants with optic nerve hypoplasia should have a CT scan or MRI to look for midline brain defects that can result in body growth problems. If the infant does not have nystagmus, the chance of midline brain defects is small. If the infant has nystagmus, the chance of midline defects is greater. Some infants have optic nerve hypoplasia in one eye only. If only in one eye, the chance of midline defects is very small and the doctor may chose not to do a CT scan or MRI, depending on other factors. There is no treatment or cure for optic nerve hypoplasia.