Happy Birthday to Madalyn

Yesterday was Madalyn's 4th birthday. It has been amazing to be her mom for 3 1/2 years! The one thing I never realized is how much closer a child brings a family. It's awesome to watch the love my parents and sister have for this child! She gives us reasons to take trips together, to eat together, and take bike rides together. All these things are things we would want to do, but because of Madalyn we actually find AND take the time to make them happen.

Madalyn celebrated with her school friends at the Jump Zone on Saturday. Happy 4th birthday Madalyn! You are such a big girl now!

Trip to the mountains

At the end of the summer we took a trip with our family to the Smokey Mountains! We saw a momma bear and two cubs. We spent two days at Dollywood watching the singing shows and riding kiddie rides. We hiked to a waterfall. We inner tubed down a river with some little rapids. Oh, and mommy got a new clutch in her car when it burnt out on the way up a big mountain to our cabin.

First trip of the summer-to the beach

Evaluation

Madalyn had her evaluation on Friday to compare her use of her left side before and after the ACQUIRE program.

As expected she initiated more of the activities with both hands and some with her left hand only. Her left hand was more fisted than it was during the cast, and more fisted than I wanted, but I can safely say one week post therapy it looks great, and has been more relaxed again. Tone is something that varies, so I really try to focus on function and strength when trying to evalulate her progress.

I am mostly happy that activities with her left hand just plain look easier for her:)

Update on cast off work

You may remember last year during the ACQUIRE program I described a possible phenomenon that is a result of the child either thinking about and/or actually moving their unaffected side while casted each time they practice a skill with their affected side. This can result in an association being created in their brain that becomes a habit.

If two activities happen simultaneously inside our brains, connections are basically "wired together".

Last year this did not happen to Madalyn. I hypothesized (or did I read it??, who knows) that it happens to "more affected" children. However, since it did happen this time, I'm guessing is possibly has something to do with her age. Or maybe last year she did not think about her unaffected side doing the activity during therapy and this time she did. I mostly ponder this because it is interesting to me, not that knowing "why" will make a difference in Madalyn's future.

This "habit" or "connection" should go away after a bit, and her bilateral use should not be affected. But for now, when she does a difficult activity that she practiced during ACQUIRE, her right hand inadvertently performs the the activity simultaneously...

Here's a video of her one week post ACQUIRE program:

Dressing skills

Madalyn has been working hard on dressing by herself. I am planning to talk to her Occupational Therapist back home about seeing Madalyn for one hour sessions rather than 30 minutes so they will have enough time to add dressing practice and weight bearing to their current program. Although it is my responsibility to practice and do the home program at home, it will help if she gets reinforcement and direction from her therapist as well.

Madalyn does not work nearly as hard for me as she does her therapists, so it helps if I have someone leading our home program, and supporting us since afterall, I am just "mommy".:)

Removing top from bubbles

Madalyn did a great job removing a lid with her left hand.

Cast off-bilateral work

Miss Katera removed Madalyn's cast on Wednesday. While taking her bath, Madalyn excitedly held up two hands and clapped. Then she showed me all the things she can do with two hands.

My sister and I took her to Alabama Adventure, a huge waterpark that I think costs more than Disney World to enter for 4 hours...but oh well.

We had a good time and left just before it started to rain.

Once the cast came off, her hand immediately became fisted. As expected her tone came back. The older she gets and the more experienced I become about hemiplegia, the clearer spasticity becomes to me. Although I always "knew" what to expect, it's different when the forever part starts becoming a reality. A long time ago I asked her neurologist if her brain compensated so well from the injury, why couldn't it go one step further and heal the motor deficits. Dr. Parker said, "that's just the nature of kids and Cerebral Palsy". I am really starting to understand that.

Like all new parents of kids with hemiplegia, you start off when they are a baby stimulating the affected hand, encouraging them to use it, and it really seems like that could make a difference, but it's just not enough.

So, although simply starting early and stimulating her hand isn't enough, the one thing that has made a difference so far is this program. She enjoyed it, worked hard, and we gave her the very best opportunity I know to gain function in her left arm and hand.

We are leaps ahead on supination. Her confidence and motivation to dress herself are increased. And I know the upcoming year of weekly therapy will be more productive because of the work she did in Birmingham.

Tomorrow before we head home, she will have an evaluation in the clinic to see exactly what skills and strength she has gained this time.

playing bubble and opening lid

Eating yogurt with left hand.

Desoto Caverns

We visited Desoto Caverns on Sunday.  It's about a 45 minute drive from Birmingham.  Madalyn and I took the tour through the caverns and watched the light show.  During the tour we got to experience total darkness which was neat.  Afterwards Madalyn jumped in a bounce house, panned for gem stones and sifted through sand in search for crystals!  All great therapy activities.

I wrapped Madalyn's cast in a plastic bag and we had a great time being squirted with water! You can hear her laughing in the video.   She thought it was very funny that I screamed when I got squirted.    

Mcwane Science Museum

Madalyn is having fun over the weekend at the Mcwane Science Museum.

In hand manipulation

This is a difficult task that Madalyn is practicing. She holds a bell in her fingers, and then lets it roll into the palm of her hand. It requires supination to keep the bell in the palm as it rolls.

Still more therapy goals

Here Madalyn is cutting with left hand. Remember, the goal of practicing the cutting with left hand is not so she can ultimately cut with left hand, because naturally she is right handed. It is simply good strengthening, and occupational therapy for the left hand. Since cutting is something kids like to do, its a good activity to entice her to have fun while working.

More therapy goals

Madalyn works from about 8am until 2pm. They work on all sorts of activities and as she masters them, they constantly search for new tasks to conquer. Here she is practicing turning pages with left hand.

http://www.youtube.com/watch?v=JmJQp31o_Ok

Weekend after week 3

So, one of the great things about constraint therapy is that every day, all day is therapy. The picture on the left shows Madalyn playing with sand at the zoo with left hand. Then she petted the goats, with left hand. Then she held a heavy popsicle with left hand. All the while she was having fun and didn't mind that the tasks were a little harder than if she had her right hand available.

I'm feeling the same way I did last year at the end of week 3. That is, sort of sad to see the cast go. Always wondering how much better it could get with "just one more week". When I told Katera how I was feeling she chuckled and said she hears that with almost ever family.

But, I am motivated to keep up the work at home, even if we don't have the cast on.

Previous blog entries

June 27, 2006 First thoughts on diagnosis

So, I decided to start a blog. I'm so brave about it that I set my viewing options to "private". We'll see how it goes. I wanted to have a way to keep friends and family up-to-date and as excited about our progress as we are. Also, my thoughts are that I want someday to share my daughter's journey into physical therapy with other parents just beginning the journey. If one out of 5,000 babies have a stroke either before they were born, or right after, then everyday, parents are learning the scary news. There is a lot out there on the internet, but personal stories, and looking at it through the eyes of a parent that is one, two, or many steps ahead may be helpful. So, that's my goal. Right now, I don't know where this will lead us. Madalyn is 9 months old, diagnosed two weeks ago by an MRI.

At this point, I have been looking online trying to compare her MRI report to other kid's reports to see if I can "guess" her prognosis. Well, after much common sense thoughts, I've found out that common sense doesn't really work when you are talking about a child's brain and its injury. One child's MRI can look like another child's, and their abilities may be vastly different. This defies my common sense! And drives me crazy.

But, my common sense wants to say," I know she has right periventricular leukomalacia." What does that tell me? Does it make her at an increase for seizures? Does it mean she will have cognitive deficits? Per the radiologist, we cannot know for sure. We know, from her symptoms, that she has spastic hemiplegia left side. Basically, her left side is tight, and weaker than the other. Strange, tight and weaker seem to be antonyms. But, when the brain is injured and cannot control the muscles, they become rigid. So, when she tries to move her left hand, it is very clumsy, at best.

She's only 9 months old, so people want to tell you "she'll be fine". "She'll grow out of it", "she'll be as good as new", think optimistically.

Well, I tell you what, I would, but there's these really serious looking films called MRIs that show her brain, and they show that there is a brain injury in her white matter. Well, the brain doesn't regenerate. So, whatever that part of the brain was responsible for now has to be re-routed. How well her brain is able to re-route, is an unknown. So, now we begin physical and occupation therapy to give it every chance possible to help it re-route.

I know some people probably think I sound pessimistic, and really, I'm not. I'm just scared right now, Scared about how her life will be...for her...But she does have many things going for her. The biggest being her sweet, loving personality. That will carry her far!!! So for now we will wait for her pt and ot evaluations and for our appointment with the pediatric neurologist. I am hopeful that they can shed more light on what we do now, as well as what we are looking at in the future.

June 27, 2006 What made us suspect a brain injury?

When Madalyn was two months old, I noticed that she had the reflex where babies keep their hands above their head a lot. I thought it was a bit odd that every picture of her had her hands extended, but I passed it off as being overly paranoid. My sister noticed that her left eye did not open as well as her right eye, but I denied that one too. I did however notice that she was a little "crooked". I tried to look at her and determine what made her seem crooked. I thought maybe one leg was longer than the other. Her pediatrician in Guatemala noted that her skin folds on her legs were uneven, so we thought it was an orthopedic issue. But after being seen by a pediatric orthopedic, he determined that her leg bones for the same length. He

passed it off her lopsidedness as being in utero all balled up, and thereby still "leaning" to one side. This was a perfectly logical explanation, as other symptoms had not presented themselves at this young age.

Around 6 months of age, I noticed on two separate occasions that her leg trembled like a small muscle spasm, but since it didn't occur again, I blew it off. I do remember asking Amy if her kids ever did that, and she said no. Part of me really wondered if it was all related, but I really did not want to think anything was wrong, so I didn't mention it again.

Looking back at the first signs, and knowing what I know now, it seems strange that I didn't at least look at the possibility of a prenatal stroke, but I really did not know that kids have strokes.

Fast forward to 8 months old. Now her right hand is getting quite proficient. But her left hand is usually kept in a fist. I try to entice her to use it, and I realize she has no control over it. I casually mention it to her pediatrician. I honestly figured it was just because she would be right handed. He suggested an MRI. I was a bit surprised by his seriousness. And then explained to me that babies don't show a preference to hands until at least age two. A-HA. I did not know that. I thought I had read all the proper books and articles on early childhood development, how did I miss that? So, we waited two weeks for our MRI appointment.

June 28, 2006 The MRI

The MRI was scheduled at Baptist Hospital. I called the day before and learned that I could pre-register. They input all of our insurance information and information about Madalyn into their computer. This later proved to be very convenient.

The nurse called me a few days before to prepare me for the MRI. She explained that with such a young child they would need to sedate her. This means she could have no food or water 6 hours before the procedure. After the procedure, she could only have clear liquids. She explained that Madalyn would have to drink some bitter tasting medicine to put her to sleep, and then an IV would be started to further put her under.

So, the night before the MRI, I sat my alarm clock for 6 1/2 hours before the procedure and gave my baby a bottle. She never opened her sweet eyes, but she drank the whole bottle and then went back to sleep. I woke her up the next morning, and we headed for the hospital. I guess the bottle worked, because she didn't even get hungry before the procedure!

They hooked her little hand up to a machine to measure her oxygen level. When you sedate people, sometimes they get so sedated that they don't breathe enough and their oxygen saturation drops too low. So, this is put on to monitor that.

We forced Madalyn to drink the bad tasting medicine. She cried until she fell sound asleep about 2 minutes after. Immediately her oxygen saturation dropped to 95%, then to 90%, then to 85%. They put her on some O2 and it came back to 90% and stayed about that during the procedure. They then took me down to the MRI room (in radiology). They layed her on a table, and slid her into the big machine. After 25 minutes of some loud knocking noises, they were finished. After they did the initial MRI, they determined that they did not need it "with contrast", so they never even had to give Madalyn an IV. Without contrast is quick enough that she remained sedated by the oral medicine alone:) The radiologist tech came and asked me a few questions about her birth mom's pregnancy and delivery. I immediately thought that they must have seen something. But we had to wait for the radiologist's report.

I was very fortunate that the radiologist came in to tell me his findings. He explained that there was some atrophy in her brain causing the spastic hemiplegia. He said it was probably due to a prenatal or perinatal stroke. I asked him how big of an area it was, and he said not small, but not large either. He deferred all my other questions to a neurologist.

Okay, so we have our answer. Or maybe, just more questions.

June 30, 2006 Physical therapist evaluation

So, we had our evaluation today. Madalyn is up to speed on all her sedentary activities. She is about 2 months behind on her moving activities (crawling, etc.). No surprise there.

The biggest thing I learned is that Madalyn is not allowed to put weight on her legs until she has braces for them. And no braces until she is ready to pull up on her own, which comes after she learns to crawl. So, no more walkers, exersaucers, and no more "dancing". This will be tough, but we can do it.

She also has torticollis, which just means her neck is tight on one side, so we have stretches for that.

To get her ready for crawling, we have to do lots of tummy time. So, that's about all I learned today. We will have the Occupational Therapy Evaluation next Friday, same time, same place. I will list the exercises we were told to do in a separate entry.

Occupational Therapist Evaluation

(The sweet picture of this entry was taken at my office. After therapy, I brought Madalyn to my office for the afternoon.)

The therapists seemed very optimistic. It was really hard though, because on Thursday night Madalyn started not feeling well. I couldn't tell what it was, but I knew something was bothering her. So, I made her a dr appt before her therapy appt, so we would know (thanks mom for taking her to her doctors’ appt while I worked)....well,she has an ear infection in both ears!! First one (that I know about). So, she did not feel well for her therapy, but we made it through. Hopefully the antibiotic will kick in fast!

The OT is very nice. She was very optimistic. She said that Madalyn's biggest problem with her arms and hands seems to be her shoulder. It is what is tight and does not allow a normal range of motion, though not bad.....so, I have lots of stretches to do 3 times a day for that. And I'm supposed to just keep encouraging her to use her arm and hand.

They did fit her for the little thumb brace, and we picked out hot pink.

The PT just practiced the same exercises we did last week. She did say she had gotten better at all of them, so she could tell we had been doing them, so that is good.

All in all, I left feeling much more optimistic than I had the week before. I think I’m just getting used to this, and getting used to the fact that she may be perfectly fine, or she may have to work harder than some kids, but either way, we will have to wait and see.

Entry for July 17, 2006


Here's Madalyn eating some of Papa's home grown corn. She loved it!

Still working hard on our stretches and exercises. Some improvement on her ability to move one hand in front of the other in a crawling position.

On Friday, the PT noticed that Madalyn's legs are crossing. She looked closely and doesn't think its a hip problem, not sure what it is....but, hopefully as she starts to take off, she can get them uncrossed and use them.

On Friday, the OT showed us a really cool trick. When you bend a person's wrist down, it naturally opens the fist. When a person brings the wrist back to neutral position, it closes (at least it closes in Madalyn's case, since she often keeps it fisted). So, what does that do? It allows me to put objects in her hand, without pulling her fingers apart. And teaches her the feeling of having her fingers clasping and unclasping.

Caregivers and Madalyn's therapy

Sister Paula at Madalyn's daycare told my mom that if I tell them what exercises to do with Madalyn they will work with her. So, I made this Excel spreadsheet. I thought I'd share it here because it gives a good idea of some of the exercises Madalyn is doing, and what purpose each one serves: Madalyn's Physical therapy exercises
Diagnosis: Spastic Hemiplegia, left side
Probable Cause: Stroke that occurred before Madalyn was born
Overall purpose: To help Madalyn gain more control and flexibility of her left arm and left leg
Exercise/Request/Stretch	Purpose
No standing, or putting pressure on Madalyn's legs.	Her left foot and ankle are not in a healthy position. Putting weight on them before she has braces may cause deformities. Also, her gait is scissored. Walking before correcting this will reinforce "bad habits"
Encourage her to get on her hands and knees in a crawling position, as well as encourage lots of tummy time	Learning to crawl before walking will force Madalyn to bear weight on her weak arm. This

Testing blogger

Testing how this blog works since 360 is closing down :(