a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Saturday, October 31, 2009

A BEE-utiful Halloween

Yesterday we experienced the thrill of trick-or-treating on the Lawn at UVa. Each year the students of the university host the event which is free to the community. We debated whether or not Oia was ready for something like this since she is still new to the walking thing, especially knowing the crowd that this event brings each year. The weather was warm and Rob works next to the Lawn so we decided to meet him there and give it a go. She walked holding our hands when the crowds were tight but when on the grassy lawn we let her walk as she pleased. This was her night. We were tickled to see our 'bumble bee' experience Halloween on her own, walking among other bees, dogs, ducks, ladybugs, cowboys and witches. We all had a wonderful time and will certainly venture there again next Halloween.

And if Oia could talk she'd tell you that the juggler in the crazy hat was by far the best part of her night. She stood there mesmerized for what felt like an hour watching this guy. It's the little things in life, right?
Final picture is from the pumpkin patch at Belvedere Plantation. We went there last weekend with Oia's friend Elena (who also has cerebral palsy) and her family. Notice that Oia is holding the vine with both hands, thanks to a verbal reminder.

Tuesday, October 27, 2009

Eye Surgery

Unfortunately, that's what is next up in line for Oia.

Ever since Oia has been in glasses (since 4 mo. old) we have been monitoring her eye condition very closely. It hasn't been until the last 6 months or so that surgery has even been a topic of discussion at her eye appts. But, what was once in the distant radar is now right in front of us.

We began 'patching' Oia's dominant eye, her left eye, via Atropine drops in early summer. We went to the doctor after 3 months of dropping and there was little to no change in her right eye. Dr. recommended that we give it another 2 months of dropping and see what happens. Well, we went to the doctor yesterday and same status...little or no change in her weak eye. Weak eye still remains inward most of the time and she can't seem to bring the eye over far enough to use her peripheral vision at all which means left eye is doing all the work of both eyes. Not good. So, doctor was ready to schedule Strabismus/Eye Muscle surgery yesterday saying it was "no big deal, a quick, minimal, out-patient procedure, brief recovery". But hold up here...since when is surgery of any kind no big deal ... maybe when it's NOT your child! Oia will go under with anesthesia and her eye will be opened. Seems like a big deal to me. I realize we must do this for her to enhance her chances of seeing the world the way the rest of us can. However, we have our feet on the breaks a bit right now as we wait for our next appt. with a new opthalmalogist in northern VA. We have heard fabulous comments about this doctor and his practice so we will value his opinion on the suggested surgery. Who knows, we may even transfer Oia's eye care over to this practice if we gel more with this doctor than her current one.

So surgery it is. But not until we get some questions answered. Is this the only surgery for Oia's eye conditions? Is this the right age or the right time to do the surgery? What are the risks? How soon until she undergoes the same surgery again since research shows the first round doesn't usually hold for most kids?

Second opinion appointment is November 10th. More to come then.

Friday, October 23, 2009

Camp Righty is over...

so what better way to celebrate than with a comfy t-shirt that reads "I Survived Camp Righty"!? Hooray!
The final day of constraint therapy was yesterday, making Camp Righty a total of 34 days but who is keeping track? Today we returned for a final evaluation but Oia was acting as a typical 2 year old and wanted to play with the therapist's pens and paper as opposed to the toys presented for the eval. I will speak for myself though and say that I am pleased with her progress, though seemingly small to most. Every ounce of progress gained now is huge and key to the future capabilities of her right arm and hand. This round of CIT was just the beginning to many years of therapy and practice to becoming a girl with bilateral functions. This will not be our last Camp Righty.

Some things I have learned or already knew but was reminded of during this process:

1. Oia is left arm dominant. That we know. She can play with her left arm OR she can play (kind of) with her right arm but not together. When Lefty is engaged, Righty is generally clenched/fisted and inactive due to 'overflow' and increased tone to the right side. Kids with CP do not have selective muscle control which means when muscles in one area of the body are engaged, the rest of the muscles in the body are triggered and flexed as well. During CIT, Lefty was 'shut down' which allowed Oia the ability to concentrate on right handed movements without the constant overflow. Cast off, now we're back to the overflow.

2. No doubt Oia has improved strength, grasp and control in her right hand post CIT. We see it and her therapists see it. I remember on the first day of CIT, I placed a snack into Oia's hand and asked her to take a bite. She tried. She tried really hard. She had to look at her hand, think, and very slowly tried to bring the snack to her mouth but just couldn't quite get it all the way there. She had to lower her head and lean down to the snack to 'meet it in the middle' at her chest. She did this for two bites before she dropped the snack and realized that the effort was not worth it.

Last day of CIT was a huge improvement. She not only could pick up her own snack now, but she was able to bring it all the way to her mouth to eat it and with little to no effort. When she finished with one tortilla chip, she reached for another. Perfect.
3. The therapies we are doing now are forging pathways for later. I have to keep reminding myself this. Progress may seem minimal where Righty is concerned but it's all about training the brain. When Oia becomes of an age where we can explain to her our goals and she can give input towards those goals then hopefully things will be easier because of what we are doing now. I guess that saying "if you don't use it, you loose it' applies here.

We will continue to work on right handed and bilateral play every day. I will still continue to say "where's Righty" and "use two hands" 18,000 times a day. Thankfully, she is very receptive to verbal cues and that is usually all it takes. We will follow through with CIT's home program and wear her left arm splint for 20-30 minutes each day (if not longer) and for all of our OT sessions. She'll get it. Not now, not next month, maybe not next year, but she will get this. I have all the faith in the world that she can and WILL get this.

Oia, we are proud. Proud of you, proud of your patience, proud to be your parents. Keep up the hard work.

Sunday, October 18, 2009

Conquering Extreme Terrains

Walking indoors is a fairly safe venture for us these days if corners of furniture and other dangerous surfaces/edges are covered, blocked, etc. We still hold our breath though while Oia walks around the house but her protective responses have continued to improve over time thus making for a much safer fall. Most of the time Oia is in control enough to fall on her bottom...most of the time...which does make it easier for us to back off a bit and not feel like we have to be RIGHT. THERE. One of her current IFSP goals is to walk indoors, room to room, with only supervision; meaning Rob and I can be in another room watching while she wonders into a connecting room. Really though, we joke that this is much more a goal for Rob and I as her parents, not her. She is fearless.

However, walking outside is a totally different story but still, she is doing AWESOME. Grass, mulch, rocks, pebbles, and not to mention steps, inclines and declines; are all extreme terrain in our world. We have spent A LOT of time in the last month or so walking outdoors on all different surfaces.

This first vid shows Oia walking on flat ground with low grass.

The second vid is Oia walking slightly uphill on gravel. She usually can maintain her balance for a few feet on gravel but doesn't always stay walking in a straight line as the gravel shifts her balance and direction which makes her fall easily.

The last video is the most recent one. This is our paved driveway that has a significant incline. We have practiced this for months with me having to hold onto her one hand but she's finally getting it on her own now. Weight shifts for kiddos like Oia don't come easily making slopes and hills very difficult to maneuver. For us, up is doable (kinda) but down is a current no-go...an instant faceplant.

This is the driveway slant from the side. Doesn't seem like much in a photo but I'm sure this feels like a mountain to Oia. Walking this also provides her calf muscles a good stretch which is important.

And all of that in a cast! Not too shabby.

Friday, October 16, 2009

Camp Righty...Extended!

Today was supposed to be the final day of Camp Righty. Supposed to be. Our CIT therapist, Rob and myself, all agreed that now is not the time to end the party. I would have never imagined saying this 4 weeks ago. However, Oia has made tremendous progress on so many levels that we decided to give this one more week of full constraint. After this additional week is over, her cast will be removed and cut below the elbow and turned into a splint for easy removal. The splint will become part of our home program post-CIT. The goal is that Oia will wear the splint a couple hours each day and for all of future OT sessions. We need to continue the right handed and bilateral play long after CIT is over or else the gains she worked so hard on during the casting period could very easily be lost.

Also today, we met our CIT therapist off site from KCRC to have a session at Virginia's Discovery Museum. The activities must be new and engaging enough for Oia to be interested in right handed-play so a different environment was just the thing. She used Righty to play numerous musical instruments, climb steps, roll balls, touch various textures, push buttons and carry small, lightweight objects to place into baskets.

This video shows Oia grasping foam letters and carrying them to the baskets for release. Her grasp now is accurate and she has built up the endurance to do this several times in one activity. She is also able to release the letters with control and accuracy. In times past, prior to CIT, objects generally needed to be placed into her right hand by an adult and then she would either pull it out with her left hand or her grasp would be so weak that her object would just fall out after a few seconds. What a difference 4 weeks has made and look how proud she is.

Another reason to continue Camp Righty...

She has finally, for the first time ever, voluntarily chose to use two hands to hold an object. In the past, if an object was too large for her to pick up with one hand, she generally would leave it and go to another toy. Here she is trying to put the ball into a hole with both hands.

Lefty is holding the guitar and Righty is playing. Again, two-handed play.

We are tickled with her progress, not to mention her patience. She continues to amaze us.

Tuesday, October 13, 2009

Happiness is...

knowing our little girl has had a good day AND a good laugh.

Monday, October 12, 2009

Camp Righty Update

We are in our fourth and final week of Constraint Induced Therapy (CIT), aka "Camp Righty". So far, so good. Oia is doing amazingly well. I had set myself up for a hair pulling month but Oia has done a fantastic job of proving me wrong. She has been so tolerant of right handed play and has made REMARKABLE gains. Her grasp, strength, accuracy, and endurance have all come quite far in just 3 weeks. Our CIT therapist said during today's OT session that progress has been 'beautiful'.

We've spent the last 3 weeks (as we did before CIT began but more of a focus now) incorporating right handed activity into our daily play and routines. Our days have been intense but enjoyable. Here is Oia holding on with Righty to stabilize herself while getting a wheelbarrow ride.

And then Righty found some dirt...great sensory feedback!

Sunday, October 11, 2009

Milestones and Therapy Schedule

Oia’s Developmental Milestones

Independent sitting – 8 months
Rolling over - ~15 months
Transitioning from lying on back to sit – 16 months
Creeping/commando crawling – 19 months
Reciprocal crawling (crawling on hands and knees)– 20 months
Cruising – 21 months
Climbing up stairs – 22 months
Sit to stand (from chair) – 20 months
First steps with forward walker – 18 months
First steps without assistance – 21 months
Controlled walking with close supervision only- 24 months

Current Therapy Schedule

Physical therapy 2x/wk
Occupational therapy 1x/wk
Speech therapy 2x/mo

First Constraint Induced Therapy (CIT) - 10 months old, duration of 21 days, through UNC
Second CIT - 25 months old, duration of 30 days, through Kluge Children's Rehabilitation Center, UVA

Rewind to the Beginning

Better grab a coffee...

Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee. When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.

Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.

Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.

I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”

My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.

I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.

As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?

Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:

“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.

Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.

The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.

That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.

Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.

And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.

The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.

So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.

Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.

Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!

**Update: In early November, 2009, Oia's neurologist at UVA found that Oia did not suffer from a stroke during pregnancy. This doctor concluded that she has cerebral palsy secondary to Schizencephaly which is not caused by stroke, instead caused by a faulty migration pattern of brain cells in the early weeks of fetal life, causing a cleft to form within her brain. We have been told that Schizencephaly is not genetic but rather "just one of those things".

Friday, October 9, 2009

It's official.

My first blog, my first ever post.

I have decided to create this blog for a couple of reasons (in no particular order).

1. My daughter. A scrapbook, if you will, to highlight her journey (our journey) of hard work, patience and determination.

2. For loved ones not so near.

3. For families out there who are raising a child with special needs. It's not easy. I find comfort and strength in following other blogs of folks in similar situations. I hope I can provide the same feelings of comfort to others by sharing our story.

Thanks for caring...thanks for following along with us.