
We finally have a diagnosis for my son. With it, all the pieces began to fit together.
Friday, we took him down to the PMR (Physical Medicine and Rehabilitation) doctor. They deal with neurological and musculoskeletal issues. As he went over medical history with us, he watched Andrew as he walked around the room and climbed on chairs and such.
He then examined his legs, arms, and feet. He had him walk up and down the hallway, then took us to a little “gym.” There he had him walk up and down stairs. From all of this, he was able to tell us that his right leg muscles are tighter than the left, his facial muscles are weak, and he tends to lead with his left leg when climbing.
Putting together all the pieces (sleep apnea laryngomalacia, drooling, speech delay, choking and vomiting, and some slight seizure activity), he has been diagnosed with a mild case of Cerebral Palsy. This was something that our neurologist considered a possibility, so the diagnosis was not a complete surprise.
The PMR doctor wants an MRI, which we’ve already scheduled. He wants an overnight EEG, which we have also scheduled. He wants another barium swallow (he had one done as a baby), which we need to schedule. We also need some blood work and a hip X-ray. He also asked about genetic testing, which we already started and are waiting for results. He will be getting new braces to wear on his legs to help with toe walking and muscles. Lastly, he will be getting physical and occupational therapy two to three times a week.
The prognosis is a good one. The hope is that once the plan is in action, by the time he is five, he will hardly show any signs of the CP.
What made this whole thing really emotional is that we found out on the weekend of the first anniversary of my wife’s sister’s passing. You may recall that Grace had Cerebral Palsy and passed away at the young age of 10. The family went out to the cemetery today. My daughter said it was “Aunt Gracie’s Happy Jesus Birthday.”
Despite everything, my wife is a rock. She is positive and keeps telling me, “We’ll get through this. I’m not worried.” On our drive home from the doctor, she could tell I was running through everything in my head. She knows when I’m distracted. I can’t help it. I couldn’t stop thinking about it. She kept telling me to “get out of your head!”.
She was the one experiencing a bit more emotions than me, and she was still the one who kept a level head. I know she is right and everything will be ok. I’m thankful for a diagnosis. That gives us a plan of action. No more guess work – it’s there. Now we just tackle it head on.
I think you are right to seeing the diagnosis as an action plan, rather than having to guess and try things in a hit or miss way. it sounds like you are on a good path, and while it won’t be easy, you will definitely be headed in the right direction to help your son to reach his full potential. hugs to all of you for not giving up until you found out what was really going on.
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Thanks, Beth! It is just nice to have it all figured out, to a degree. We have a few more tests to run and see if they give us more information, we’ll handle it with faith.
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Glad you have a diagnosis finally. I’m sure you and your wife will be amazing at facing this together to give him the best prognosis. Sending hugs.
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Thank you so much! My wife always keeps me on track. I tend to be the worrier and she reminds me that all will be ok. We can face anything with a little faith.
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Stay strong my friend, this time shall pass too. Hugs
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Thanks, my friend!! One day at a time. Always looking ahead…
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You’re welcome 👍🏼👍🏼👍🏼
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Thank the Lord for good doctors. Stay strong and your family will get this done. Sometimes it’s tough to be a rock when it comes to our children, but it sounds as if you and the Mrs. will lead each other. Bless your son.
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Thank you, Phil! I am so blessed to have my wife. She and I will get through this with a lot of prayers and a lot of work.
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You sound like it is better to know and have a plan and I couldn’t agree more. Bless you both for your strength. The care plan seems quite comprehensive, which is great. All the best and stay strong.
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Thanks, pal. I appreciate it. We’ll get through this.
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There’s a song that goes “And the darkest hour is just before dawn”. I’m sure you know the one. You’ve gone through the dark of unknowing. Now you know and that knowledge is power. With the help of good doctors and therapists and God’s guiding hand, you will get through this. My thoughts and prayers are with you and your family. Keep the faith, Keith. Best always.
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Thank you so much. Faith will get us through. Lots of prayers.
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I am so glad you gave some answers! Like you said – now you can tackle it.
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It’s good to know, and at the same time overwhelming because of all that needs to happen now
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I am sure it is. I hope you can get more answers.
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Well, that’s mixed blessings. Not a great diagnoses, but it is great he’s diagnosed and a plan to treat is under way. It would be excellent if the minor symptoms he has are gone by 5 and him going to school. Also good for you for paying attention, I’m sure many parents would not have noticed the symptoms. I’ll keep you all in my prayers.
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Thank you, my friend. We’re very positive that things should get better!
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Praying for you and your family.🙏🏻❤️
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Thank you so much!
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You’ve got the plan and the determination, that is half the battle!
Tip if you have not done an EEG yet – Dawn dish soap for the first round of hair washing after!
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I work in Sleep Medicine, so we use that same paste for our hook ups. Dawn works!
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