Asher has Cerebral Palsy.
Cerebral Palsy is a non-progressive brain injury. The damage was done when his brain hemorrhaged shortly after his birth and it has not worsened since; however, as he develops, we will see more and more of what he is capable (and incapable) of doing.
This diagnosis is not a shock to us, I promise you. I'm sorry if it is to you, but the signs have all been there and we have not hidden them. Since his problems at birth, we knew this was a possibility. At a couple of months old, we realized it was probable. In the past few months, we accepted that it was inevitable. We knew that this diagnosis would come at today's appointment and we were ready for it, as ready as you can be anyway. I am tired of telling people he is delayed or has "muscle issues". I am ready to make people aware.
Asher is not delayed - delayed implies he will catch up. He won't. With continued therapy he will improve his skills, but only time will tell how much. His right arm is very weak, his left arm is less than ideal, and his legs are tight, but hard to tell how much function they have. Currently, our biggest concern is his core. He is very floppy, still nowhere near sitting.
Until he is two years old he will not get an official diagnosis of type of CP because the doctor wants to observe him and see how he progresses in that time. She does want to send him for an MRI as he isn't "fitting the box" of typical CP patterns, making his type harder to diagnose. She thinks he may have Athetoid Cerebral Palsy, characterized by fluctuating high tone (tightness/stiffness) and low tone (floppiness), however he isn't showing some of the other symptoms of that type, namely issues with talking and swallowing. The damage shown on the MRI will help her with the diagnosis and in turn, treatment.
At this point, she put him at a 3-4 out of 5 on a severity scale. 1 is the best - minimal problems, and 5 is the worst - in a wheelchair with no speech and head control. Knowing she has absolutely no way to predict the future, I asked her what a 3-4 means. She said walking with a walker and maybe a wheelchair for long distances. The best indication of walking ability is sitting by age 2. That gives Asher almost a year (corrected), so that is our first goal.
You're probably thinking this is all pretty crappy, right? Well yes, I suppose it is. But here are some positives to count on:
- Everyone feels confident that Asher is not congnitvely impaired in any way. He is smart as a whip, social, happy and completely in tune with people and his surroundings.
- He has proven himself a miracle many times over. Why not again? Not saying he is going to come away from all of this "cured" - not at all. But saying maybe that 3-4 out of 5 on the severity scale turns into a solid 3, edging closer to 2. That can happen, right?
- He is motivated. That cannot be taught. As long as he has the will to try, his possibilities are endless.
- He has all the therapy he can take advantage of and we are doing everything right. Nothing will change because of this diagnosis. If anything, the answers can only make life better from here.
- He is loved and supported by more people than we can count.
We are blessed, CP and all. It may be Asher's diagnosis, but it is not his definition. He will do great things, mark my words.
He will do great things! I have never seen a kid work so hard at anything. He has the determination to make the best of this.
ReplyDelete-Jamie
As you said so many times before, Asher is Asher and does things on his own terms. He is a tremendous little man and I can't wait to see what he will achieve later on. Let me know when you want me to stop by for a visit and I understand if you don't get back to me right away. Much love to you all! Val Xx
ReplyDeleteBrave and beautiful post Trac. One day at a time mama. Kostylove surrounds you five sweethearts.
ReplyDeleteMuch love to you. Asher will continue to amaze you, I have no doubts about that. There is something about our little guys--they defy the odds at every chance they are given. :-)
ReplyDeleteIf you want to chat, you know where to find me. Hugs.
Tracey - you are amazing!!! It sounds like you were really ready for this diagnosis...and I don't blame you. It's always better to know than not know. You have done a FANTASTIC job of explaining Asher's diagnosis. Hugs!
ReplyDeleteAshy's Ashy. Nolan's Nolan-bear. Rio's the Ri. Lots of love always, bbt.
ReplyDeleteChildren are what they are, and with all the love and support from each other you all will do great things. I know it!!
ReplyDeleteYou are such a strong family! That is enviable by many!
ReplyDeleteLisa
I know how you feel, Asher has lucked out with amazing parents and siblings this will get him further in life. Kendryks type has floped around alot but last thursday a day after 2 she was confirmed with Athetoid Cerebral Palsy with mild quadrapligic involvment. Aka all limbs affected. Our last appointment with Corrie wa changed and we will now see her at nureo muscular clinic. A year ago K could not even crawl we had no idea what her future held but being the unique form she has show massive progress, which I also hope Asher will show.
ReplyDeleteOur MRI was told to be a 18 month wait but ours in April 12 so about a 7 month wait.
I am here if you have questions
I look up to you tremendously as a mother. I hope I am half the mother to Joe that you are to your children. How wonderful that Asher, Nolan, and Rio have you to call "momma"
ReplyDeleteLots of love and support coming from us!
***Hugs***
I suspect all three of your kids will do great things. Thanks for sharing.
ReplyDeleteTry not to become a man of success but a man of value. Albert Einstein
Asher will build the best life for himself because he has you to model the attitude and fortitude he will need to achieve it.
ReplyDeleteVery well said! Asher should be viewed no different. He is a miracle that will continue to amaze!
ReplyDeleteThe Bros, Rio and both of you amaze us daily and I have no doubt that will continue regardless of any future hurdles. As for the rest of us we can only continue to love and support the entire T5!
ReplyDeleteamazing things no doubt!
ReplyDeletelove them all and you.
coco and fam
Great post, Trace!! You have an amazing gift for writing. Keep in mind, I am always there as someone who has gone through that CP diagnosis before and will answer any questions that I possibly can. Also remember, they said that Regan would probably never walk unaided...and you should see her now....walking, running, jumping, skipping....the diagnosis can change, I've witnessed that first hand (not the CP part, but the severity party), so keep up the positive attitude. Sounds like Asher is a tough little cookie, much like Regan...I'm sure he will amaze the doctors as much as Regan has! Sending lots of love! xo
ReplyDeletePam
Wow. Is it unseemly to mention that I love how you wrote this? My thoughts are continually with you.
ReplyDeletexoxo,
Naomi
Beautifully written T...
ReplyDeleteTrousdell 5 do and will move mountains.
xoxo
Nicely said.. he is so cute!! He's going to do great and sitting at two means anywhere from 24 months all the way until his 3rd birthday .. if you ask me. my girl didn't sit until closer to three then two and is a very close to a walker now and improving all the time!! She is 6 this weekend. She didn't eat until 4 and loves food now and she chews everything . Don't worry to much about when it happens it will. He will totally surprise you.
ReplyDeleteHi Tracy my name is Candace, my daughter Faith has CP also. Found you from caryanne's blog. It's good to hear you thinking so positively, you will need it and the earlier the better! Nice to meet your family!
ReplyDeleteHi, my name is Allison and my son Mark also has CP. He was unoffically diagnosed at 6 months. My doctor also wants to wait until the two year mark to give an official diagnosis. I hate hearing how "my son will be just fine" UGH! It drives me crazy and it comes from family.
ReplyDeleteI love that you have a positive attitude and that it came so quickly. I wish that was the case for me. Now, I can be positive as I see the wonderful miracle and blessings that are happening in my life. There are lots of moms out there in the blog world that have a child with CP that provide a level of understanding and support that my real life friends cannot. I hope you can find that love and support too!
I think blessed is the truth! Pity, Never! Admiration, yes. I hope to meet your beautiful family one day. Until then, your blog is my friend!
ReplyDeleteAmy
Tracey,
ReplyDeleteI've visited you from Caryannes blog. Welcome, welcome to our marvelous club. My granddaughter Hailey has athetoid c.p, some of the things you describe about Asher remind me of her qualities also. People with Athetoid C.P. tend to be above average academically. Hailey understands exactly what we are saying to her all of the time, in fact, I swear she is one step ahead of us most days and she is extremely determined oh and might I ad beautiful. I know you don't need convincing, you seem to get it already (which is already a head start)keep challenging him and he will keep amazing you. I've read that people with Athetoid C.P. are eager to please. Hugs to you and your family!
I admire your bravery....your son will thrive and grow as none other because of your will for him! I felt the same for my son with CP and he is now 9. He walks, talks, and is in a mainstream classroom with supports. Congratulations on realizing the power of advocacy so early-it will serve you and Asher both well.
ReplyDeleteYou, your son, and your whole family are an inspiration to the world. I am grateful to have read this today. I admire your strength and wisdom.
ReplyDeleteHi Tracey,
ReplyDeleteI read this post last week and have thought about you ever since. Personally, I think that Asher is one lucky little boy. After all he has been through he is lucky to be alive. He is lucky to have an amazing family and an amazing twin brother who will support him always. Not to mention that Rio will grow up to be a loving, caring and unbiased young lady all because of the lessons that Asher will teach her. CP will never define him; it will only make him stronger.
Chin up, you are an amazing family and Asher is an amazing little guy.
Ann D.
I haven't read all the comments (or the other posts yet...) My name is Cheryl and I have a 2 year old with CP, I followed you here from Cary. I am always excited to meet other CP families. I blog at http://beautifulsideofhectic.com. I am just in awe of this post! You AND Asher (obviously) are SO strong!!
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