We're starting to see a little more of our girl again. Maia isn't back to baseline, but she was better today. Ate a hard boiled egg and some yogurt for breakfast, then had half of a pear a little later. Unfortunately, we're still having problems in the pooping department. We've tried prunes, prune juice but she doesn't like them at all. Raw veggies... not so much. If any one has any dietary suggestions, I'd love to hear them. The spina bifida complicates matters because of the lack of tone in Maia's colon.
Anyway... she was more active today - still not interested in the chasing around the house that she and I were doing last week, but she showed interest in playing again. We are very thankful for the improvement. Again, thanks for your continued prayers!
Saw the opthalmologist this afternoon. Maia's vision is good in both eyes, but she uses them each independently. When she uses one, the other basically shuts off and she doesn't see out of it. Her right eye is stronger than her left so we will start patching tomorrow. She is to wear the patch for 4-6 hours/day while awake until she begins to use both eyes equally. We will go back to see the ophthalmologist in 6 weeks and she will be scheduled for surgery to correct her strabismus at that time. I'm pleased with the person we saw because he specializes in the type of surgery that Maia requires. He told us that Maia's convergent gaze problems are common in children with hydrocephaly and is very knowledgeable about this issue.
Since we started the process to bring Maia home, I have been praying that God will put the right people in our path to provide her with the best possible care. With the appointments we've had so far, I have no doubts that God is answering these prayers and thankful for these physicians who are committed to helping our girl be the best she can be.
We stopped at Culvers after today's appointments. Maia was quite happy with her corn dog and ate the whole thing. Frozen custard? Nope - not interested. I think it's too cold for her - given her reaction to cold foods, I'm guessing she must be used to eating things are room temperature. She doesn't know what she's missing out on!
Word for the day: "Up." As we climb "up" the stairs, Maia very clearly said "Up" today. When we we were walking in to the house from the garage, I said "Maia's dom" (dom is Russian for house) and she said "Dah" which is Russian for "yes." It is so fun to see the progress and learning!
I look at our precious girl and am so thankful to God for blessing us with her. Mark and I enjoyed our life before Maia came home - we didn't feel that we were missing out on anything. But now... she has definitely added something wonderful to our world!
Did she get a cute eye patch? I saw a kid with a very cool eye patch a few weeks ago.
ReplyDeleteJaxson wouldn't eat anything cold for the longest time and he still prefers not to have ice cream.
Melanie, all three of our little boys have low tone and specifically low tone of the digestive tract. Our GI doc has Michael on Miralax, 1/2 cap full, twice a day. It works GREAT! REaly gets everything 'going'! You buy it over the counter so you do not need a prescription and we also buy the Walmrt brand and it works as well as the name brand. It is like fne granule that you add to soft food; pudding, applesauce, yogurt, etc. You might give it a try and see how things go. Works miracles for Michael and kept him out of the hospital for a while!
ReplyDeleteY'all are doing a GREAT job with Maia! She looks so happy and adjusting well in the pictures! God is so good!!
Debbie
Matthew and Michael's mommy
Hi Mark and Melanie,
ReplyDeleteWe are adopting older children from Ukraine soon and have enjoyed following your journey.
A couple of thoughts...Maia's aversion to cold foods could be a problem with a tooth. We've seen this in hosted older children who don't like ice cream and it turned out to be sensitivity in their teeth...it hurts!!
Wonder about a stool softener or suppository? Can your pediatrician help with ideas here? White grape juice was recommended to us decades ago to help in this department.
Keep blogging...we're following and praying for you!!
Marie
So glad to hear she's on the upswing! Praying she's completely back to normal soon. I think it's very normal for kids that have been fed warm food/drink their whole life not to like ice cream. Hopefully by summer time she'll be over it! :-) That's so awesome she's doing so well with her words too. Yay!
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