Thursday, July 8, 2010

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.

Monday, July 5, 2010

Independance Day

Well, unfortunately July 4th wasn't exactly what I had envisioned. We started Adventures in MFW this past fall and I was hoping to have the culmination of the curriculum at the July 4th celebration. Well, since we still have half the curriculum left, that didn't really happen. At least we studied the Revolutionary War and Declaration of Independence already! So, a little disappointing for me, but I'll live.

But, we did have fun this weekend!

We made some no-bake cookies together... Mmmmmm....

We made some crayon "cookies" from our old broken crayons (thanks for the idea, Anne!)...

This ended up being more educational than I had planned. Sid the Science Kid and Princess Pea had apparently learned about "cool" and "warm" colors, so Sid decided he wanted "cool" and "warm" crayon cookies. Next time I'm hoping to mix some colors and watch them blend into new ones.

And we dressed up for the holiday and went to Grandma and PopPop's for a cookout...

MommyK and Myra

Myra's 1st Independence Day!

The Klan (all hot and sweaty from playing outside)

We also went with our cousins to the firework show, but my camera died and these are the only photos I got! I'll have to post the cute ones from Aunt Sarah's camera of all the kiddos in their little chairs later...
MommyK with Myra and niece Avery

Mr. Prince had to prove he could do it, too...

On a side note, I was visiting with a friend this week who babysits a little girl who is 6 months old named Sophia. Now, I haven't been around a lot of babies since Myra was born, so I don't have much to compare her to besides the memory of my own kids. Not that comparing is great...but it does give me perspective. I was able to play with Sophia and get a feel for "normal" tone and strength in a baby close to Myra's age. I was happy to "feel" that Myra's tone is very, very normal. It gave me chills just thinking about how that part of her is HEALED! I think Myra is very much the size of a 6 month old right now, too. She doesn't have the chunky legs, but her length and such. Sophia and Myra were so cute together. Sophia kept grabbing at Myra and pulling on her shirt or caressing her arm and Myra loved it! She could totally tell she was there! And, she sat up against the couch for a long time!

In the next photo you can see the difference in Myra's head. It slopes back because the skull is not growing. I see her all day long, so I know there IS a difference, but I don't really SEE the difference myself until I compare her. It actually doesn't look THAT far off to me... Now, compared to another nine month old, it might be more noticeable. But, we are continuing to pray for the little brain growing in there and praying her suchers don't fuse. I've read that even if they fuse, the doctors won't do anything about it because it's due to a brain injury. I don't quite get that myself, but we are praying God moves those suchers himself and heals her brain. My baby girl, she is still the most beautiful girl in the world!

How cute are they?! So sweet...And Myra's not the only little girl with floppy ears!

And, I also wanted to share... four times in the past few days Myra has looked right at me. Right into my eyes. I can tell she is looking at me. The last time I remember her doing that was when she was in the hospital. I melt (and cry) every single time she does it. My baby girl is seeing things, I know it. She is seeing her Mommy again. Thank you, Lord...for another extension of your grace.

Sunday, July 4, 2010

Up All Night

Poor Myra.

I wish I knew what she was feeling.

Pain? Restlessness? Agitation?

No one has gotten sleep since we changed her dosage of ACTH again this past Thursday. She is having trouble getting to sleep and staying asleep. Then, when she finally seems tired enough to fall sleep, her body jerks her awake....Over and Over and Over again! I'm not sure if these are some type of myoclonic seizures or just startles or something. But, I hate them. They are just making this whole experience worse. Myra also seems to have these "shakes." You can't see her move, but as you hold her she is almost shivering. It isn't all the time, but I've noticed it a number of times in the past few days.

My poor baby.

Paul and I have starting taking "shifts" in order to get sleep. It's almost 7am and I've been up since 3:30am. Myra has slept about 20 min in there. Paul was supposed to have her from 8:30pm to midnight. I'm really hard to wake, so when she fell asleep around 1am, he actually still had her....sorry, Honey! So, she got a whole 2.5hrs. Oh, the days when she slept 7 and 8 hours... how I long for you!

I just feel so bad for her. I have no idea what it's like to have a seizure, but I'm sure it's not pleasant. I have no idea what her abnormal brain activity feels like. I have no idea what she can see, how she perceives the sounds she hears, what she can understand.... At nine months I started teaching my babies sign language. Myra isn't able to do signs herself at this point, but I plan to regularly do them for her. I hope they will allow her to be able to understand what is happening, predict what will come next. We touch her chin before we put anything in her mouth for "food" or "medicine." Now, when I feed her solids she often times will open her mouth after I touch her chin! She gets it! I have also started to do "milk" by squeezing her hand twice before I nurse her. And I do "finished" with her hands when she is done eating. Sign language has been awesome for my other kiddos, so I suspect it will help Myra. I've always wanted to learn the entire ASL language. Well, God gave me a visually impaired child instead of a hearing impaired child. But, I still think teaching signs a little differently than I have before will help her understand us better and eventually allow her to communicate with us earlier. Helen Keller, hello?!

For now, she is starting to fall sleep in the sling. Do I even attempt to lay her down when the other four kiddos will be getting up in the next hour? Plus, I've already tried to lay her down twice since 3:30am and both times she woke up immediate...WIDE awake...


Morning to all of you who got a lovely nights sleep! I hope I'll be going back to bed soon.

Happy Birthday USA, I don't feel like celebrating you today, sorry. Thank you troops, who do more than we could ever understand!