B saw his Ortho Dr and we got a spine x-ray. She said his scoliosis has no change. GREAT NEWS!!! Best thing I could have heard. He will get another x-ray in 5 months.
After B saw his special needs-rehab Dr. She said he looks great, she is happy with him. She put him on a day dose of the baclofen (a muscle relaxer to help with high tone in his arms and legs). He was just taking it at night so now we can see how he dose with an added dose per day. We talked about looking into a chair for him since he is outgrowing his stroller. When we return in 5 months there will be a vendor there to go over some options with us. She gave us a Rx to get him night braces for his feet. This will help stretch his tight ankles. She gave us a new overall diagnosis of Cerebral Palsy. A scary word but I knew it was coming. This will also be helpful with insurance. In the end it doesn't change anything....it's just a word. So the official diagnosis is: Spastic Quadriplegic Cerebral Palsy. The quad just meaning all four limbs are effected.
I snapped a pic of B's x-ray. The tube is his shunt drain that goes into his abdomen. The reason it's so long and coiled is so it can grow and expand with him. I thought it was pretty cool looking. If you look close you can see the small curve in his lower spine. His curve is only at 8* right now, very small.
My sleepy man passed out in the waiting room.
Being silly on the exam table. (Dad dressed me so I look like a blueberry, LOL)
We are still letting the CP diagnosis sink in. It's definitely a scary word but it doesn't change how I feel about B. He is a special little guy. All his nurses and Drs certainly adore him and his little flirty personality. Of course I do too.
23 comments:
You are right- just a word!! He is such a cutie and you are such a great Mom!
I cannot how BIG he is getting!!!
I haven't commented in awhile, but still read! One of my girls was JUST diagnosed with this CP a few weeks ago. She is now 4, almost 5 now. She wears AFO's on her legs to help support her balance and coordination which helps so much when she has them on.
I'm thankful you got this as early as you did. so much could have changed for us if we'd known sooner, but Faith's began to present itself as she began to walk/run/jump etc and since she was born at 23 weeks, she has been delayed in everything.
I'll be in prayer for you family. It was a hard swallow for us, but it also didn't change anything either!!
LOVE that precious smile :)
I have read your blog since long before Brayden was born, but have probably never commented. I am a young 20-something teacher and have a brother with Spastic Quadriplegic CP. He is now 25. Although I am not a parent and cannot completely imagine the emotions you are going through, I read your blog and envision my parents in the same situation so many years ago. As a sister, I feel so blessed. Although our life has been different, it has been completely enriched by my brother. He is such a blessing!
Brayden is just adorable and I love reading your story! I'll be thinking of you all as you go about life with this new diagnosis.
I am a long time blog reader, though I have never commented. I just wanted to say I am sorry for the diagnosis but your attitude is amazing!!!! You are truly an inspiration. I will continue to keep you and Brayden in my prayers!
I can't believe how big he is getting!! His smile lights up his whole face! He is just SO cute!!!
I studied special education in college and worked with a few CP students. They were the most special people I have ever met. I am still in contact with a few of them and they are all successful students and growing and developing like they should. Just like you said, it is just a word and having a diagnosis with definitely benefit him. You are such a good mommy!!! :)
he's sooo sweet. You are a wonderful mommy and have such a positive attitude. Brayden is so lucky to have you.
Heather...since day 1, your positive attitude and unconditional love for B has been such an inspiration. I know the feelings you have inside are probably very different then what they seem, but you are always smiling, always grateful and always so proud of your little man. I know he feels that love and that is why he is ALWAYS smiling too. These are just words, but at least now you can make sense of some things and move forward. I think you are just amazing, friend :-) And that little peanut of yours is pretty amazing too!
CB means nothing. i shared my cousins story with you about her having it... like you said its just a word. I have lived through it and seen what the physical therapist can do and they are miracle workers... keep your head up and dont let them get you down!
I have read your blog for several years, and you are constantly amazing me. You both are wonderful parents. I have a friend who I met in college who has CP. I actually just saw him this past week, he was giving a speech to college students. Meeting him changed my life and gave me a new perspective. I thought I'd share his story if you are interested. http://www.kylepease.org/ and http://www.race.kylepease.org/
You're right momma, just a word! Love his sweet smile, it is SO very evident how much he is loved!!!
You are so right. It is just a word. Your love, dedication, and positive attitude is so amazing! B is super lucky to have such an amazing momma ;-)
will the night time braces also be sporting your favorite football teams?
I'm sorry you got your scary diagnosis word but happy that you still have your sweet, happy boy. That shunt xray is crazy looking!!
I also think the shunt x-ray is pretty awesome looking.
You're right.. it's just a word. I can only imagine how terrifying this must be, but he's the same 'ol B ;) What a special guy he is!
God blessed y'all with such an amazing boy! He is so happy and you all take everything with grace! Let me know if you need to talk.. I am always here for you! :)
You are an amazing woman, and mother. And D an amazing father.
Brayden picked you two as parents for a reason.
Your strength, courage and love are an inspiration to all.
We love you all.
Mom and Mark
The diagnosis should open some doors for resources and that's the only time you need to think about it. Brayden is cute and sweet and has gorgeous eyes and is learning all the time. Enjoy him and share him with us!
As always B is in my prayers. He is such a little warrior and couldn't be any cuter!
This little man is so lucky to have you for his mommy! You are the definition of strong!! Thanks for sharing B with your readers!
I haven't ever commented, but I love your blog. Don't be scared with the Cerebral Palsy diagnosis. I have mild Spastic Hemiplegic Cerebral Palsy also from being born too soon and as a child had the wonderful opportunity to be surrounded by others with cerebral palsy in physical therapy and in speech therapy with similar cases like B. You seem to be as supportive as my parents were with me throughout a journey where you are labeled by people who just don't know better. Although it did take some time to catch up to my classmates in the beginning, just because of verbal and physical delays, CP is not the end of the World, but rather a huge beginning. If you have any questions, please feel free to let me know. Thanks for sharing your journey. I hope it will educate those with misconceptions about CP. It affects the muscles, not the mind...
It's great that you have a diagnosis. It is just a word but it's good to have those words instead of always wondering.
I love your pictures you two are just the cutest!
Just catching up on your blog and wanted to tell you that I was saying a prayer for your sweet family and little B. I think about y'all often. I can not imagine one single person better suited to be B's mama than you are. Your love for your baby shows in everything you do for him. XOXO
My next door neighbor growing up and best friend had CP. Her dad went to PT school to help her. She is still alive and thriving (in her 30's). She taught us all so much about life and was/is a blessing. Praying for your little family.
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