Well, in the last 2.5 weeks since Myra has been home I have had 25 appointments (8 or 9 have been home visits thankfully) and in the next month I have about 14 more scheduled. So, I have been busy...to say the least. =) Myra is seeing a pediatrician, neurologist, ophthalmologist, chiropractor, massage therapist and surgeon and is getting services from Parkview Home Healthcare and First Steps. I have a feeling this next year will be challenging dragging 5 children around to all these appointments. Fortunately, I have had help these first three weeks she has been home from Mr. Prince, my friend Andy and Grandmama, and I haven't had to venture out yet with all 5. Next week all that will change.
Myra is physically doing very well. She moves like a 6 week old baby with only slightly high tone in her legs. I haven't noticed her tremors for over a week now, but it's hard to tell since she has overactive reflexes anyway. But, she basically looks like a perfect little newborn. She is nursing full time and we haven't been using the G-tube. The surgeon said he will take it out in mid-December if we continue to not have to use it and she is gaining weight well. She is now 7lbs 13oz, a pound bigger than when she left the hospital 2.5 weeks ago, and they seemed pleased with her weight gain. She does have a herniated belly button, but her pediatrician said it is of no concern and will likely go away by 9 months old. Her bump on her wrist has gone away completely and was likely due to the IVs from the NICU. She is holding her head up well and tracking us as she watches us, so they are pleased with her current developmental status. She did pass her hearing test and will be seeing a ophthalmologist to check her eyes this month. So, physically she is doing well. Oh the praises God has received from this little girl and those around her!! We are SO very thankful that God chose to prove those NICU doctors wrong!
Neurologically, we still aren't sure how she is doing. She had a repeat EEG today and will be having an MRI this month, also. These tests will tell us a little more about how she is doing neurologically. She is still on Phenobarbital for seizures, but they are currently weaning her off this medication in hopes she will continue to not have seizures. A therapeutic level is between 20 and 40 and she is currently at a 17 still with no seizures. Please continue to pray she will not have any seizures. Both neurologists we have seen told us she is at high risk for having seizures at any point in her life. So, even if she doesn't seize in the first year, she could seize 10 years from now. So, unfortunately it's something we will always have to be prepared for even if she is able to wean from the meds right now. If she does seize, they will keep her on the Phenobarbital for a few years. We are also supposed to be watching for infantile spasms, which are different than seizures. I was told these are precursors to "not good news" for Myra, so we don't want to see these at all. We will be looking for these for the entire first year but are praying we don't see them. As far as her brain damage, the MRI will tell us a little more details but still can't predict the future. Her possible developmental delays and handicaps will show up over the course of her life. Good thing God will never leave us to deal with this alone...
Of greatest concern right now is the fact that her head has not grown since birth. She should have grown 2cm so far, but her bones on her head are still overlapped. They said this is because her brain has not grown, which is their concern. They aren't sure why her brain isn't growing, and don't know if it will grow at all. They said worse-case senerio is that her brain wouldn't mature at all beyond this point and her body would grow, but she wouldn't develop past an infant. Today was a hard day discussing all this with the doctors. I figured because she is doing well physically that she must be doing well neurologically. But, unfortunately, how she is doing now doesn't help predict how she will do in the future. And, the doctors can't make her brain grow, but I know God can! I am pleading with God to perform yet another miracle for Myra. Please join me, for God has answered the prayers of many for her in the past.
Thank you to all who have babysat, made a meal, called to talk, and sent up prayers. We feel very loved and supported. God has surrounded us with a fabulous church family and wonderful friends for such a time as this.
3 comments:
Still praying for you guys and especially for Myra.
I was just curious what the doctors are telling you was the cause of all of this. Myra's symptoms are so similar to our Levi and our doctors have gone back and forth saying things from "a lack of oxygen sometime before, after, or during birth" to an in-utero stroke. The First Steps therapist just told me this week that brain bleeds can just occur spontaneously for seemingly no reason.
Yes, they've told us there is really no way of knowing the cause or when it happened as well. I was just wondering if they had suggested anything different to you..it seems every doctor or nurse we talk to has a different theory of what might of caused it.
Not knowing the cause of the issues he has (or had) already really isn't an issue with me...it's just the whole idea that if we knew the cause that somehow we might be able to help him overcome easier or prevent anything from happening again. But even as that thought forms and I type it, I can hear God very clearly telling me that He knows exactly what the cause was and He knows exactly what the future holds.
Sorry for rambling...I just figured if anyone understood if would be you. Hope you don't mind! :-)
The PT told me that babies who have had brain bleeds tend to "look away" from the bleeds...so they favor the opposite side that the bleeds are on. Basically right now she wants me to hold him on my right more so that he will have to look to his left more to look at me, feed him more using his left side, and play little games with him by laying him on the floor (either back,tummy, or side)and try to get him to turn towards his left by talking to him or rattling a toy.
We haven't started any reflux medicine yet. We mentioned the issue to our ped. but I think she was waiting to see if thickening would help or if he would grow out of it soon. I'm planning to mention it again at our next apt.
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