Medical Updates

Well, these last two month has been a whirl wind of doctor appointments, summer days of fun, and trying to get my life back in order. Here is an update on Myra, since a few people have been asking...

In July Myra's pediatrician said she had low iron (6.8 when it's supposed to be between 11 and 13!), so we opted to start her on a multivitamin instead of constipating iron drops. Her levels were back at 9 a few weeks later, but we will keep an eye on it in the next few months.

Myra is still off the charts small just below 12lbs, 25inches long and head circumference at 35cm (it was 33 at birth). We are trying to stretch her stomach by putting 1oz of fortified breastmilk down her tube after each feeding. I really can't wait until this tube is gone, but for now it's helping Myra get healthy and allowing her to take her meds without choking everyday, too.

The Developmental Specialist at Riley Children's Hospital, Dr. Anxiety, seemed to be pleased with Myra's head control and even got her to push up off her chest during Tummy Time! He wants to put her in some hand splints to open her hands more, but I think we are going to try some tape to help first. He wasn't as anxious this time and I liked him a lot more than our first visit.

Myra is still continuing to see a physical therapist and just started with a occupational therapist. They have both been pleased with her demeanor and progress just in the last month. It's slow, but there. And even in spite of these horrid medications she is taking!

The Pediatric Neurologist at Riley, Dr. Z, was pleased that the ACTH has cured the Infantile Spasms so quickly. We are still weaning her from it and she will be done in September. Then, we will start to wean her off the Phenobarbital. I'm so glad because that suppresses cognitive abilities and I'm looking forward to seeing some great changes in Myra's behavior then! She will continue on the Keppra for a year minimum to prevent other types of seizures that she could be prone to.

Dr. Z also ordered a CT scan to look at Myra's sutures (skull bones) and brain size. We got the results while we were out of town. Unfortunately, they said Myra's brain is still significantly smaller than average and they don't expect it to grow much because there was so much damage done at birth. The skull bones widen as a growing brain puts pressure on those bones; but, without a brain large enough to put pressure on them, they can start to fuse together prematurely. All of Myra's sutures are either fused or almost fused. Therefore, without intervention of some sort, her head will not get larger than it is right now, which is the size of a newborns (>14 in). It's also quite warped. Dr. Z said she would refer us to a Pediatric Neurosurgeon, but her opinion was that they still wouldn't do anything for her. We are still holing out for a miracle, but in the mean time will meat with the Neurosurgeon in September and talk about our options then.

Please continue to pray for our little Myra. I have good days, but sometimes I still feel like the Israelites in the desert when they saw so many miracles but then continued to complain about their circumstances, wondered if God was really still there and continued to ask for more help and miracles from God. I wish I could be content at this moment, but I'm not. I want more for Myra. I want and expect more miracles. I wonder, if God decided that He was done with Myra now, if I could accept that. I have faith He can heal her, but sometimes I don't have the faith that he will. And I want God's Will for my life, I just want to guide that will myself! Ha! I still don't have that control thing given up to Him, do I? I'm much better than I was before Myra, though. I know He is the only one that can heal Myra now. I know He has her life in His hands. Those are the best hands she can be in and I'm trying to continue to trust He will be faithful. I tell myself all the time that He loves her even more than I do. Hard to imagine, but true. So, if He loves her more than me and He has the power to do what is best for her, who am I to want to guide that? I don't think God made this happen to Myra, but I have already seen all the good He has done in the midst of a circumstance brought about by man's sin in the world. He has done a work in me as well. His plan is greater and better. I just have to keep reminding myself of that.