Sunday, September 19, 2010

the diagnosis.

a few days after caleb's MRI, while my sister and i were driving back to arizona with the kids, ben called to let me know that the results of the spine section of the MRI were in. 

the cysts that are on his spine are still there, but not big enough to need surgery.  we will continue to keep an eye on them.  he does not have a tethered cord, and will not need surgery for that either.  phew!  the neurologist had a family emergency and will be getting back to us with her section of the MRI in the next couple of weeks, but we were grateful for the good news.

as far as the diagnosis, it looks like he is being diagnosed with cerebral palsy, which is why we initially went to shriner's hospital when caleb was 10 mos. old, to see if this was what he had.

cerebral palsy {CP} is not always an easy diagnosis.  it's not a missing or extra chromosome.  it's not found in a blood sample.  it's what has been explained to us as an "umbrella" diagnosis, which means that there are a lot of symptoms that together add up to be CP.  caleb has had many of these symptoms:  low birth weight, failure to thrive, seizures, excessive vomiting, excessive fussiness, gestational problems, chronic constipation, clonus, hypertoned or hypotoned muscles, spasticity.

CP can occur at birth or during pregnancy, where either the baby is not getting enough oxygen or has had some type of a stroke and it causes neurological damage.  it can also be caused from infancy up to about age 3 for various reasons.

in less severe cases, such as caleb's, it isn't obvious until the infant reaches around 6-9 months when gross motor delays become more clear.  it was at this time that we first noticed caleb's physical delays.  he rolled over right at the average time for babies and sat up.  but when it came to crawling, or pulling up to stand, or cruising or walking....he fell significantly behind.  

instead of crawling caleb scooted on his rear end, and he didn't walk until after he had turned 2.  this was also after a lot of physical therapy, and walking with a walker, and then having orthotics made for his feet.

he also has a more rare form of muscle spasticity.  where the majority of CP kids that i have met or seen, or read about, their muscles are extremely tight on the backs of their legs, usually their calf muscles.  many walk on their tip-toes because their muscles are so tight that they physically cannot set their heels down.

caleb is the opposite.  his muscles are extremely tight in the front of his legs, so he actually has a difficult time pointing his toes and is extremely weak when it comes to walking tip-toed.  he doesn't have the ability to bend his feet the way he should.  but to look at him, he looks completely normal except that he's on the tiny side.  and it isn't until you watch him run or try to kick in the swimming pool that you can see that something is just a little bit "off."

so that's why this diagnosis took a little longer.  it was not cut and dry for caleb, which has been the pattern of his health since day one.  he likes to keep us guessing.

luckily, CP is not a degenerative disease.  whatever type of damage that has been done, is done.  then it just comes down to maintaining and working with what has happened and trying not to do any more damage by allowing certain muscles to remain weak while others are in a constant state of flexing.

as far as our lives changing with this diagnosis, it most likely will not.  what it will do is allow caleb to qualify for anything he might need as he continues to grow and with the physical struggles that he faces now and whatever he will face in the future.

i think the weirdest part for me is to finally answer.  a label.  for so long, through the seizures and the testing and the constant screaming and the vomiting and the nagging in the back of my mind that there was something wrong, we were told that there was no answer for him.

and so i had resolved myself to accept what we were told and just let him be.  let him grow.  let time tell us that either the specialists were right, or they were wrong.

it isn't about proving anything, or blaming anyone.  it's just been part of the journey of caleb and i believe that things have turned out exactly the way they needed to.

i don't know for sure that diagnosing him at 10 months old would have changed the way i mothered him, or the way that i looked at him but i can imagine that it might have.

to everything there is a season.  and this is the season of diagnosing and moving forward again.

we're extremely grateful that caleb's form of cerebral palsy is mild in comparison with what could have been.  that neurologically he is not just great, but fantastic.  he has been through a lot in his 5 years.  he has faced daily physical pain that i have not had to face and that i do not understand. 

i remember the baby blessing that was given to him by his dad, when he was only a couple of months old.  it was short, and direct.  there were a lot of things not said during that blessing that a mother wants to hear.  about a mission and a wife and future children.  but what he was told was that he knew he was coming to earth with physical challenges and that he would be given the strength and ability to overcome them.

his struggles are not yet over but i am hoping that the worst is behind him.

i look at him still, with all he has been through.

i watch him hang on through all that he has been given to overcome.

i watch him climb hurdles all of the time.

and i watch him smile, 

and make goofy faces,

and laugh 

while he sits on the top.

and so, that's just what we will help him continue to do.


Eileen Izatt Burton said...

Lyndsey, I am so glad you came into my life through Brooke. You and your beautiful children are an inspiration to me. Sometimes we tend to wonder "why me" but we are never given more than we can handle and you are handling yours so well and growing from it. God will continue to bless you as He has in the past. What a handsome little man you have there!

Andrea said...

Beautifully written. And I am just so proud of you...choosing everyday to face this, choosing courage and optimism. I also love that it looks like Leah is licking that ball in the picture. She is equally as adorable as the "child model" Mr. Caleb!

Cuddlydoll said...

Yeah for a diagnosis and yeah for Caleb! He is a great kid with a great name, I might add.

Garry and Mindy said...

I'm so glad that you have a diagnosis! I know you've struggled with wanting answers for well...5 years now! I think it is crazy that it took so long for them to decide that it is CP. It sounds like they looked at that possiblitly before but ruled it out? Stockton's MRI last spring showed some damage in his brain that is commonly found in kids with CP, but because he hasn't been significantly physically delayed they didn't worry about. They said it was just because he was a preemie. But man...he trips over EVERYTHING! He has a hard time actually picking up his feet. Oh well. I wish you guys the best of luck with his therapy! It sounds like you are really on top of it! Your house is so cute also! That is so fun to have space and decorate! You do such a cute job! I wish I had a natural knack for decorating!

Shellee said...

I'm here if you need anything. It must be somewhat relieving to know what you're dealing with. The great thing is you can look forward to a "normal" life, job, & relationships for him. We love ya! You are doing incredible!

Michele said...

I have to say you are such a great mom. He is so lucky to have you and your positive outlook. I am so glad that you found out that his CP is mild. You do such a great job with your kids. I love the pictures of him, such a happy little guy.

Marci Ward said...

That was so well written and I am just amazed at your attitude and outlook. Lynsey you are amazing. Isn't it interesting that when we look at the hard things in our lives, they could always be so much worse. Now I get why we can be grateful for our specific trials. I didn't understand that until recently...slow learner. But I do think you are a perfect mother for Caleb and that darling little Leah!

Mills Family said...

You are amazing. Caleb is lucky to have you as parents!!

Wheat Family said...

You are an amazing mom and one of the most optimistic women I know. I am grateful Caleb's results are coming in well, and that he is the happy energetic boy who is well loved. He is lucky to have you and Ben, just as you are lucky to have him. (and Leah) Thanks for your ongoing endurance and positive example.

Rachel H. said...

he's absolutely the luckiest kiddo on the planet to have you guys....
and such a sweet, precious little guy!

Nana said...

what a blessed little boy to have such wonderful, caring, and insightful parents! He will be successful because of you. He will be fine with CP because he is being taught that through disabilities you can do whatever you put your mind too. His Heavenly Father loves him no matter what. And He loves and blesses you too!

Anonymous said...

It is a great relief to me that they have finally given Caleb a diagnosis and everyone can move forward, armed with that knowlege. I have always ALWAYS known Caleb was an extra special little spirit. He is constantly in my prayers, as our his parents, and I deeply admire the courage and faith you have faced these trials with. Both you and Caleb are a daily inspiration to me, Lyns. Hang in there and keep up the amazing job you are doing as his mama.