Thursday, April 15, 2010

Specialists, Labels and Milestones

I've been somewhat dreading this blog post...

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

8 comments:

Taz's Mama said...

a couple things: a child born into a loving home is never a tragedy, no matter what special needs they are born with. and you are not to be pitied. you were created to be her mom, to be her family. because you are strong and because you are smart and you can be advocates with one hand and nurturers with the other.

cerebral palsy is not a label. but like you said, a way to explain the connection from the brain to the muscles in the body. there are a great number of stories where parents were told their children would never walk or talk, but the children (and God) had other plans. and they did both. there are also stories when things didn't go as expected. but you mentioned quality of life. i worked for years with severely handicapped children (most who had cerebral palsy along with medical issues) and they were not suffering. even functioning at the lowest cognitive level, they were happy. and that's what you can hope for.

the term cerebral palsy doesn't mean much more than some amount of disconnect between the brain and the muscles. there is such a broad range of what that can look like that the motto in the autism community certainly applies here as well; if you've met one autistic person, you've met one autistic person. same goes for cerebral palsy. and you utter the same loving words so many special needs parents do "it's not WHO she is". if you show it, if you bring who myra is to the attention of others, they will see it too. they will see myra instead of whatever label she is given. and you are already doing such a wonderful job of that.

the world of special needs parenting can be very overwhelming. especially when there are medical issues as well. don't get ahead of yourself. just take it one day at a time. if you want to research and learn, read positive stories by parents of kids like myra. that's the best good you can do for yourself.

anyway, she's adorable. and we have those same PJ's for maya!

-justice

The Real Life of a Red Head said...

Ashley,

Your post is beautiful. I admire your outlook and how God still gets the glory despite labels, diagnoses, etc. Thank you for sharing your story so far. God is not done with you, paul, myra or your family. I'm sure of it.

I also wanted to share with you something that touched my life when I was just 15 years old. I grew up in Munster, IN. That is northwest Indiana. I somehow got connected with an oprhanage in East Chicago that I volunteered at for over 2 years. It was for special needs children. There was a little boy there named Tony. He had Cerebral Palsy. I will never EVER forget Tony and how he impacted my life. As an infant, he was abandoned by his mother. By the time I started volunteering he was close to 5 years old. He was restricted to a wheel chair, was non verbal, but had a smile that instantly touched your heart. He was the sweetest, most gentle, child I have ever interacted with. Not a single visit went by that Tony did not show me who God is and what He is capable of. He showed me a side of God that I never expected to see. The side of God that creates "disabilities." He was exactly how God created him to be and he was like a window into God's heart.

I share that with you because even if this is what is going on with Myra, she can still do God's work. She can still bring Glory to God. God's plan for her is already in place, and she can do mighty things for Him.

I pray for you and your family frequently. Keep strong and keep praying. We serve a mighty God who loves us more than we can imagine!

Anonymous said...

Sickle-cell anemia. A form of anemia in which (if I recall correctly) the hemoglobin receives insufficient oxygen, causing the red corpuscles to form in a shriveled, sickle-shape (instead of donut-shaped). A terrible diease which mainly affects black people. It should be first on the list to eradicate once we can genetically-engineer retroviruses, right?


Well...not so much. You see, they recently found out that sickle-cell anemia confers a natural immunity to malaria. Now, in America, malaria is a thing of the past. But in Africa, where black people orignally come from, Malaria is alive and well. So this terrible disease is actually a blessing in its natural habitat. A protective trait. Removed from the environment in which it is a protective trait, it becomes a detriment to health.

We don't yet know what benefits cerebral palsy might bring in other environments (perhaps the ability to keep the brain from being overwhelmed by body pain, long enough to escape?). We are already discovering that autism seems to be linked to creativity, and ADD to danger-awareness; perhaps it is not so good an idea to eradicate, or even to despise thes "weaknesses". Let us always remember, "usual" does not mean "normal".

God has gifted Myra with the special ability we call "cerebral palsy". What purpose it serves we do not yet know. But people in the future will know, and they will assume we welcomed it, back then (now).

I will continue praying for Myra every day, and I will continue to wait for God to reveal His purpose in her life. When He does, I know we will rejoice.

Isaac

P.S. Cory ten Boom, when holding prayer services in the concentration camp, urged her cellmates to tahnk God for everything--even the fleas. And so they did. The fleas (it was the most flea-ridden cabin in the camp) kept the guards away, so they neither interrupted the prayer meetings, nor raped the women in the cabin. God sent Corrie the fleas out of his good love and grace. And God has gifted Myra with cerebral palsy out of His good love and grace. I will thank God for it, and continue to pray. (And continue to pray for faith).

Anonymous said...

Ashley, as I am preparing the promised information to mail you, I suddenly realized that the remarkable story of the baby with CP is not on my Jim Rohn CD, but rather on an older Zig Zigler tape--which I no longer have! :(

I tried to find the story on YouTube, but alas it's not to be. I'll give you the highlights, though Zig told it so passionately as he was there to see it.

3 month old was not progressing as he should. At 5 mos old, Drs. diagnosed CP--Spastic, the most extreme. Parents made a decision to reject the findings. They hired a physical therapist and started working with the baby on several levels.

Eventually, they built him a little mini-gym and taught him to "go for the goal" at each station. At 2 years old, he had not yet crawled. But he tried, and tried and broke into a sweat but finally pulled himself 2 inches forward.

At 3, he was learning to stand alone. By 5 he was walking (a little). They hired speech therapists, neuro-therapists, all types of natural healers. (Didn't have oils either!)

Long story short--he was a basketball star in high school; graduated 4.0 and onto University where he played sports and graduated Summa Cum Laude. He married and had a beautiful family.

It took years--but the parents never waivered. They prayed over the boy; blessed him; never doubted (or at least spoke doubt or lost hope).

If we truly believe the Gospel of the Kingdom that Christ taught, there is NO PROVISION for failure--none. The only thing that inhibited Jesus from healing and miracles was the "unbelief" of the people. We all believe, but most of us also "doubt in our hearts" that it will really happen.

This is not-repeat NOT the "name it claim it" TV gospel hype of the 1980's. But if we are truthful, there is no provision...no not one...when Jesus left anyone sick, possessed or without a healing. Even the man who had been blind all his life eventually received his sight.

If you and Paul venture into this amazing journey, there's no looking back; no room for doubt; no giving up--not ever. Myra's healing may come much more quickly, or it may take a lifetime. You must never doubt--never give up! Otherwise, don't begin the journey at all, lest you lost your faith.

At the end of the day, what this is about is "trust." Do you trust God to take care of Myra? Even if it meant He took her home to be with Him? Are you willing to trust Him with that decision? Learning this kind of trust opens the gates to the Kingdom where all things are possible. But as long as we hold the keys to controlling the situation, we restrain Him from intervening. He will not override you.

I speak from experience. I have seen the dead raised--twice! Uncle Joe and I have been translated through time and space to avoid death; I have supernaturally had my entire jaw and face restructured with no surgery.

If you choose to embark on the journey of "trusting God with your whole heart," you will be chastised, ridiculed and maligned by friends and family. But learning to "trust" and not "doubt" is a journey one day at a time. It was this way also for the baby and the parents of which Zig Zigler spoke.

You do not need oils or anything external for God to move. However, The oils are His medicine and Jesus used them from cradle to grave... They are mentioned over 200 times in the Bible, and the therapeutic grade medicinal quality of essential oils has been brought back after thousands of years. Remember--never use commercial, store-bought oils on Myra or the children.

Package coming soon to you and Paul.

With much love and confidence in Him,

Aunt Janet

Anonymous said...

Thanks for sharing all of this, Ashley. You are definitely not pitied - but surely in our prayers. We will believe with you for miracle upon miracle for Myra.

Melissa Cormany

Shanna said...

Ashley,

I just wanted to let you know that I pray for Myra almost as often as I pray for our Levi and we are rejoicing with you for those small milestones. We too, have been thrilled to finally see Levi "playing with" toys...actually reaching out and pulling them to his mouth! (Well, sometimes he makes it to his mouth. :o) )

We've also just confirmed with a swallow study last week that Levi is still silently aspirating thin liquids, which was a shock to all of us as he seemed to be doing so well. He can still have baby food...we just add a little cereal to it if the puree seems thin.

All that to say, we're praying and on a small level, I get it. Sometimes there's comfort in that, you know?

Lisa said...

Hi Ashley,
I can so relate to a lot of what you write. I remember the uncertainty you speak of, the doctors, the questions without answers. That's the thing with brain injury- there really aren't any concrete answers and I know how hard that can be. No two kids are alike and no two brains are the same.

With that said, you asked me on my blog about Elijah's milestones and what he was like as a baby. His development was (and is) scattered... He sat up at 8.5 months for short amounts of time. He crawled at 15 months, took his first steps at 17 months. If you look at those milestones, he doesn't seem too far behind his peers. But when it comes to fine motor and speech, his delays are much more apparent...Elijah never really babbled. He does babble now a little with the use of his hand and is learning to communicate with us in other ways, which is so exciting. Elijah didn't play with toys for a long time because he has a really difficult time using his hands. He'd maybe play for short amounts of time if I put things in his hands. He picked something up for the first time right before he turned two. I essentially needed to play for him. Elijah, like Myra, has microcephaly. His head has continued to grow, but very slowly. As for what he was like as a baby? He was a happy baby, but he often had a frowny-face (I think because he was trying to filter all of the info in his overloaded hurt brain). He had a really hard time giving us eye contact (which we found out was because of his cortical visual impairment). I think those were the specifics you asked for.

Unfortunately, there isn't a "What to Expect" book when it comes to our kids. I know you're seeking out information. You want to know as much as you can learn, which is a good thing. I know it's frustrating when doctors can't tell you what your child's future will look like. But, that uncertainty leaves room for hope. Myra is so so young and there is lots of room for hope.

Hang in there. You're doing the right things. Loving Myra, enjoying your time with her, celebrating her milestones (playing with a toy=awesome!). You really do seem to have a good mindset. Myra is beautiful. You obviously have God in your life, but it's also comforting to know that there are other parents out there too, isn't it? :) ((HUGS))

TheRextras said...

"Cognitive abilities over mobility".

I say this in lots of different ways on my blog but this is not an either-or.

Mobility and cognition are intimately entwined and self-movement is critical to cognitive growth.

Barbara