Saturday, January 19, 2013

Emotional Rollercoaster

Starting last October/November, Lila began having these involuntary gross motor movements that had gotten stronger and stronger, and become more frequent over the last two months of the year.  This may seem like one issue, however, the reason for these movements stemmed from lack of deep muscle input over a long period of time.  Meaning, if you have typical child that has pent up energy, they just run around the house for an hour and are able to feel that release and move on.  Lila, being mobile with significant limitations, does not have that ability.  Just doing PT twice a week and not having any other deep release for that build up of energy is not enough for her little body.  This may seem like a simple fix, however it lead to lack of focus at school (falling significantly behind her peers), therapies and home, long involved fits that were hard for her to come out of, and inconsistent sleeping, which affects her negatively in all aspects.  UUgghhhh, now we have a larger problem on our hands!

So, I had a heavy heart for a couple of months trying to figure out how we can help her, while at the same time utilizing all connections that we have around the country with experience in this realm.  This was extra difficult when running across people who cannot understand our daily life.  This was emotionally exhausting, physically exhausting, and consuming for our family.

Matt and I have learned over time that we are not the same people we were 10 years ago.  This is something that we have known for quite some time, but others still have trouble grasping this concept.  We don't laugh as much as we used to, aren't as spontaneous, and have extensive limitations in our ability to just go anywhere because Lila most likely can't eat the food or participate in whatever activity may be part of the adventure.  Our lives have become much more serious.  It is our job, and nobody else's, to be the advocate for this little girl, whom is the greatest thing that has ever happened to us!  What an amazing responsibility, one that we happily take very seriously.  Lila has gotten much further than anyone has expected, thanks to Matt and I.  Sorry about this rant, however this has been difficult during the already difficult time that we were having.

Anyway, I had many concerns with school that needed to be addresses (so may that I couldn't even prioritze), and needed some support from someone who understood...after a very long involved conversation with a friend in Canada, we decided to take Lila out of school for three weeks and attend a local intensive physical therapy program.   This is the same program that we go to in LA each year, but Lila works with her PT here in town, 4 hours a day, 4 days a week.  Super hard decision to make.

Here's where the roller coaster comes into play....Lila began the program last Monday, and then spent the entire day Friday at school.  Her teacher said that she has never seen Lila so attentive and excited about her work, and visiting with her friends (so much that she kept getting in trouble for talking too much :-).  She was running so fast in her walker on the playground that four of her friends were chasing her and there was infectious laughter from all.  Lila also wrote her letters 100% better then ever, with amazing focus so that she could go to music with her friends.  So fun to hear all of this positive feedback!!!!

After school on Friday, we had a consult with the assistive technology specialist.  We spent 1 1/2 hours talking about different aids that could help make Lila's life easier in the classroom, and help her to complete all of the tasks that are expected of her every day.  This woman was AMAZING!  She had a bag full of goodies that will help Lila in a dramatic way, and change her daily life for the better.  During this meeting, Lila was just playing with the "babies" and having a snack.  When she was done snacking, she came over to the table ad her teacher asked her a few questions..."Lila, L  O  O  K?"  Lila said 'look'.  Then she said, "S  E  E".  Lila said 'see'.  She spelled three more words for her and she got them all correct!  Lila cannot recognize these site words on paper, but she is retaining information she is learning in class!!!  The speech therapist was also in this meeting.  She, too, is an amazing woman who has tapped into Lila like no other.  She came with good news...Lila has met all of her speech goals for the year already!  We now have to write an entirely new set of goals...very exciting, very exciting.

So, this week I feel like Matt and I have made the right decision by taking her out of class for three weeks, and offering her this opportunity to gain some confidence, stability and ability to focus again.  Whew, what a roller coaster.  Hard decision to make when your child is already behind her peers, but a good one when you see the outcome of the deep muscle work.

Wednesday, January 16, 2013

balance and strength

Lila had an awesome day again today, and is absolutely exhausted!  She was so tired this morning, however, we arrived at therapy and she was sooooo happy to be there.  Here is a video of her strength and balance exercises...

One more day this week, then to school on Friday.  She is very excited to go to school, so I hope it goes well and is not too much for her to handle :-)

Tuesday, January 15, 2013

New Year, New Lila

Lots of things planned for the New Year in an effort to help Lila progress and give her every opportunity possible to shine!  Today, we began our first 3 week intensive physical therapy program of the year.  Over the past eight weeks, Lila has had a few involuntary movements surface that had either been at bay for a while, or we had never seen them before.  This put us on high alert to watch her progress and the progression of these behaviors.

Sure enough, these involuntary movements have gotten worse, and are especially worse without enough rest or with too much stress.  In the past, Lila has been able to regain control of these behaviors with deep sensory/muscle input (i.e. intensive physical therapy) or stem cells .  Since stem cells are not an option right now, there happened to be an intensive physical therapy opening here in town for the next three weeks, and we jumped on it!

Lila had an amazing morning, where she was totally and 100% into therapy, giving 150% of her efforts and loving it!  Here she is walking with one cane:

I will take the same video in three weeks and share with you her progress!!!!

Sunday, January 13, 2013

A refresher for us all

Happy New Year!
We have entered this New Year with some questions about Lila's education, classroom setting, and processing/learning difficulties.  Due to these concerns, I had a long, productive talk with her principal on Friday where she asked for more detailed info on Lila.  After putting this long email together, I thought this might be something to share with you all.  This post just gets back to who Lila is, how she is affected by her CP, and many side issues that affect her daily routine as well.  
Since writing this, it sure has reminded me that Lila does so much in a day, more than her little body can handle, and genuinely tries to keep it together.  This is not always possible for her, and I have to limit my frustration and try to come up with constructive ways to help her relax when she is throwing a major fit, or squeezing anything or anyone within reaching distance just to get that negative energy out.  If any of you natural, healing types have calming ideas, I would love to hear them :-)
Anyway, I hope you all are enjoying your winter!!!

What is cerebral palsy?
Cerebral palsy (CP) is a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.
Cerebral palsy is caused by damage to the motor control centers of the developing brain.
Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception, and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases. CP, no matter what the type, is often accompanied by secondary musculoskeletal problems that arise as a result of the underlying disorder.
Ataxia-type symptoms can be caused by damage to the cerebellum. The forms of ataxia are less common types of cerebral palsy, occurring in at most 10% of all cases. Some of these individuals have hypotonia and tremors. Motor skills such as writing, typing, or using scissors might be affected, as well as balance, especially while walking. It is common for individuals to have difficulty with visual and/or auditory processing. (LILA FOR SURE, along with choreoathetoid movements).

So, onto Lila.....

She was born with a cerebellum that is smaller than normal.  The cerebellum controls balance, coordination, muscle tone, speech, processing, and involuntary movements.

What this means is that Lila has what is called ataxic hypotonic cerebral palsy.  The ataxia describes her involuntary arm/hand/head movements (also called choreoathetoid movements) that get worse when tired, overwhelmed, and stressed.  The hypotonia describes her low muscle tone.  Only 10% of cerebral palsy patients have low muscle tone, the other 90% have hypertonia or mixed muscle tone.  

Due to her hypotonia, she becomes fatigued much more quickly than the average child.  This fatigue leads to an increase in her involuntary movements, which then affects her ability to focus and retain valuable info.  She lose her balance much more quickly, and can not function at an optimal level, or even one close to that.  Most kids don't need naps at the age of 6, however if Lila does not get that rest, she cannot maintain her balance even when crawling around the house.  This is why we have had to have both of her front teeth pulled, and this need for sleep does not seem to be getting better.  If she does not get her rest, by 5 pm she is hitting, biting, falling, and throwing uncontrollable fits where she cannot regain control.  This is not only miserable for her, but for everyone involved.  

Here are some more random facts about Lila's CP:
**Abnormal movements (twisting, jerking, or writhing) of the hands, feet, arms, or legs while awake, which gets worse during periods of stress, exhaustion, etc.
**Unsteady gait
**Loss of coordination
**Floppy muscles, especially at rest, and joints that move around too much
**Slower than normal growth
**global delays

Lila has also had global delays since birth.  The gap seems to get bigger by the day, of which I hope will level out at some point :-)  There is some issue with her long term retention.  For example, we have been working on letters and numbers for three and a half years now with 50% success in long term retention.  One day she remembers her letters, and the next she doesn't.  However, I can give her a sound and ask her which letter makes that sound, and she will get it right most all of the time.  I can also give her the letter and ask her what sound it makes, which is a bit harder but she does pretty well.

Numbers are even more abstract for her, but she can count anything you put in front of her.  She counted to 60 the other day for us, and just counted 29 items I had in front of her the other day.  We are working on counting by 10's, however if she can't recognize the numbers, I am not sure this is the right thing to do.

We also believe that Lila is color blind.  We have had the test done three times now and she has failed every time.  Each practitioner says that she may be too young to give her this official diagnosis, or it may be due to her brain/CP issues.

On another note, she has major food allergies to gluten and dairy.  These are so severe that she has anaphylactic shock to each of these foods if ingested.  Epipen worthy each time.  This has been since birth, so we are very careful with her diet.

Laslty, we have recently had her tested for dyslexia.  Again, the specialist said that this is usually not diagnosed until 3rd grade, but Lila seemed to have all of the markers.  What this means is that she is a visual learner...a picture thinker.  Even when it comes to letters and numbers.  When I say picture thinker, I don't mean that she will grasp the info if there is a photo of an elephant next to an E.  I mean that she needs to see the actual letter in 3D to be able to recognize it in 2D on her paper.  We spend a ton of time at home molding the letters in clay, and still one day she will know the letter F, and the next day she will not.  Frustrating...yes, but I could imagine that she feels it even more than we do. 

Because of her slow processing and lack of focus when something is too hard for her to retain/learn, she chooses to shut down.  She has done this since she was 1 year old.  If something is too difficult, which happens often, it is easier for her to shut down than to try to focus and then still have the possibility of not succeeding.

Oh, one more the beginning of February we have an appointment with Dr. Meier, a vision specialist in town.  This was based on a recommendation from Lesley.  He should help us all to know how Lila tracks when looking at a book, letter, or activity page with directions.  We can gain a lot from this information, not to mention all of the other tools he may have for us from an educational setting perspective.  I'll keep you all posted.

Hope this wasn't too much info :-)