Mostly because I haven't yet sorted out my own feelings, let alone having to think of everyone else's reactions to what I might share. I'm sure those of you who have read my blog know I'm a pretty detailed person, and you might get bits of information here and there from the sea of information that I type. But, there have been so many details given since last September, that I'm sure even Mr. Prince couldn't retell them like I could. But, that's me. There have been a number of times I've been sitting with a doctor in the last few months and have been asked if I have a medical background. No, but it seems to be I am getting a crash course in neurology, therapy, anatomy, etc! But, as people read and then talk to me, I see the small bits of information they hold onto, knowing many of them probably don't read all my posts. What I don't want anyone to do after reading this post is click away from this screen seeing myself or my daughter as I suspect most might. As a label. As someone to be pitied. As a tragedy. And remembering just a few words I mention. I know many still will, but I wanted to just say up front that God is not done with Myra, and no matter what label they place on her or box they fit her into, I know God has the ultimate say and all these experiences are purposeful in His Perfect Will.
Mr. Prince and I took Myra to see a Developmental Specialist and Neurologist at Riley Children's Hosptial this past week. We were hoping to gain more information about Myra's future and more explanation about Myra's current condition and development. We have not been happy with our neurologist here, and with Myra's vision impairments, I think even her therapists and pediatrician are at a loss in helping us teach and work with her to some extent. Sometimes I feel like I'm the only person in this state that has a daughter with a brain injury and visual impairments based on the lack on experience and knowledge these "specialists," and even certain organizations centered around these issues, have. It really is frustrating.....and sad. I know I'm not the only mom searching for answers.....
So, to make a long story short, we missed our neurologist appointment at 8am. We had 1.5 hr drive, left late and then arrived at the wrong location....it was lovely (hear the sarcasm?) So, we ended up waiting almost 2 hrs for our Developmental Specialist appointment. But, it proved to be a good meeting, despite what I might say about the doctor.
I'll call him Mr. Anxiety.
I really did like him, but he definitely had some interesting mannerisms. Mr. Anxiety gave us a lot of information about brain injuries, typical outcomes, treatment options, and so on. He spent lots of time with us, answered all our questions and was very detailed and knowledgeable. I definitely would trust Myra's care to him. But, he was also a little anxious and maybe somewhat aggressive in his approach. After a brief examination of Myra, he mentioned hand splints to keep her hands open. Yes, often times children with Myra's background have clenched fists, but 97% of the time (and when you aren't messing with her) Myra's hands are not clenched. So, splints are not necessary in my opinion. (And my physical therapist would agree.) Also, after seeing some of Myra's "tics" and her new "episode" he got very forceful and said, "What neurologist where you supposed to see today? See needs to see a neurologist TODAY!" He went on to mention the worse form of infantile epilepsy (West Syndrome/Infantile Spasms), of which I had researched extensively, and I did not think that is what she was displaying. But, I did agree she needed to be seen asap. He found a neuro who was willing to see her immediate and sent us on our way with a future swallow test to be done (to make sure she's not silently aspirating), a warning to stop feeding her baby food (of which I decided to NOT stop), and a follow up appointment in 3 months. All in all I like him and look forward to gaining more information from him. But, I do think we'll have to have some discretion and not jump to do everything he might suggested. He seemed to put her in a little box before we even arrived based on what a piece of paper said. A fear I have that everyone will do once they hear it themselves...
Cerebral Palsy.
Myra has been diagnosed with cerebral palsy. She was actually diagnosis at 4 months old in January by our neuro here in Fort Wayne, but we found out reading it on our exit paperwork at the office. Not a great way to get information like that. At the time we just ignored it, saying you can't actually diagnose a child with CP until they are two, which is what we had been told. But now, understanding the term better, we know it's just a description of how her brain is communicating with her muscles. Myra has weak muscles in her trunk/neck and tight muscles in her arms/legs. It's a description of how her brain is operating, it's not who she is.
Dr. Anxiety seemed to assume Myra will have all the same challenges many children with severe cerebral palsy have without considering she might be doing "better than expected" in some areas. Very irritating to me, but probably not uncommon. Another thing, and certainly not the last, that I'll have to let roll off my back...
We met with Dr. Calm, the neuologist, next. He never mentioned Infantile Spasms, but definitely thought the new "episodes" she had been having for three weeks were partial seizures, and also thought all of her "tics" and twitches were also seizures. We had been told after a 3 hour video EEG in March that these were NOT seizures by our old neuro, so it was very upsetting that these could still be considered seizure activity. Some have been going on for over 4 months now and this could mean she could be seizing over 100 times a day! He couldn't explain why the EEG would be wrong and also couldn't prove that they were seizures without another EEG. So, he just said that seizure or not, sometimes a change in medicine is a good thing. So, we discussed medication options and settled on adding Trileptal to her current Pheobarbital, in hopes we can wean her off the Phenobarbital soon. Unfortunately we won't see results for 3-4 weeks...
Poor Myra cried all the way home. We stoppped several times, succeeded in calming her, but as soon as her back touched the car seat, she started wailing again. Such a bummer because she did so well on my two other longer drives last week and did great on the way there, too. Unfortunately I think Indy is going to be a regular "vacation" spot for the next number of years.... We are hoping Myra will cooperate more often than not.
Dr. Anxiety talked about a great Cerebral Palsy clinic at Riley, mentioned wheelchairs and feeding tubes, walkers and therapies, talked about possibly not being able to nurse Myra anymore....it was all a little overwhelming. Cerebral palsy, microcephaly (small head), epilepsy, cortical visual impairment (visual impairment due to brain damage)....the labels are stacking up. Can God still be glorified in the midst of labels and challenges? I know He can.
And one such glorification....
Myra had a new milestone in the midst of all this overwhelming news! She played with her first toy! I bought some new Discovery Toy items for her and she looooves her octopus! It has a crinkle collar and she purposefully moved her right hand over and over to make the crinkle sound. It seemed much harder for her to use her left arm (something I've never noticed before) but nonetheless she touched the crinkle with both hands multiple times. I have a video, but I can never get them to upload on Blogger. But, here are some pictures!
She was very excited...
SUPER excited in this photo!
Both hands...
She even sucked on it....another first!
Another toy I purchased...musical instruments...
Loves these, too....Can you tell?
I have always said to myself that even if Myra is 6 months behind on all her milestones, it doesn't matter. It just matters than she hits them. But, my thoughts have changed a little. Of course I am praying and working with Myra to hit her milestones (and assuming she will get there and amaze everyone who knows her story!), but I now have other more important things to consider. Sight over blindness. Thank you, Lord! Cognitive abilities over mobility, if I should have to choose. Please bless her, God! What gives a child real quality of life? I still don't know the answer to that exactly, but I think I'm on a path to find out. One day at at time. One miracle to behold at a time...
No matter what, Myra will always be our miracle. God has proven his love to us over and over in the last seven months. And I have a feeling He has great plans to show us a love that many people don't get an opportunity to see on this earth. I think we'll need the constant affirmation, too.
And the moments I cherish most right now are when I hold my baby close and she nurses contently. When she's in the arms of her siblings and they see nothing but a new sister, a perfect sister. When the prayers at the dinner table for healing suggest the only answer could be "yes." When Myra smiles. I'm getting the impression these could possibly be some of the easiest months for a long time. I'm going to enjoy them and not look at what isn't there, but enjoy everything that is. Blessings... joy... love....
Boo Boo and Miracle Myra
Princess Pea and Myra have a very special connection
