Did I Mention…
June 11, 2010 | Updates
that Samuel is now on NO baclofen? (Since the 5th of April, actually.)
In April, we filled the pump with saline. It has taken us 5 years to reduce his pump down to zero. The withdrawals have been terrible and I’m glad to say they are OVER! Our goal now is to remove the pump. Samuel really doesn’t need it anymore. His tone has changed from severe spasticity to more athetoid type movements where he moves himself constantly and keeps his own range of motion. Although the constant moving comes with its own set of difficulties, I much prefer them over the spasticity. Most children with high tone end up needing tendon release surgeries, knee release surgeries, hip surgeries, rods placed in their backs due to scoliosis, etc, etc. And that’s not mentioning all the pain that being so tight causes them. I much prefer to deal with my little wiggly boy than surgery after surgery and cast after cast. And I can’t imagine the heartache that those things cause most parents of children with cerebral palsy. There is not one day that I take the fact that we aren’t dealing with that stuff for granted…not one.
Now…if you want to know what I credit as having helped Samuel go from severe spasticity to athetoid cerebral palsy, I’ll tell you without hesitation…Hyperbaric Oxygen Treatments. I am convinced, without a doubt, that they made the difference. Samuel couldn’t move until we started HBOT and within 40 treatments he was bending one leg and within 40 more, he was moving everything. It also helped his vision, his swallowing, his awareness and more. If I could go back, the only thing I would do different concerning HBOT is I would do more treatments and sooner!
So, that’s my soapbox! I didn’t mean to get into all of that, but we are so excited to be thinking about getting Samuel’s pump removed. It is a big surgery and that stinks. But it will be one less thing he is dependent on and I’m sure he will be happy to get that hockey puck out of his tummy! They won’t let us do it for a few months just so they can make sure he absolutely doesn’t need it. But all is looking good so far.
So, now you know!
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June 12th, 2010 at 11:24 pm, La Donna Says:
Did I tell you we are headed towards oral baclofen as a trial for JoJo - the Botox/phenol injections are not working so well. We may test out the oral . .. although I am worried about the whole-body effects. We have avoided surgeries so far for the spasticity .. . we stretch like crazy and pray pray pray.
I, too, think the HBOT helped us out. We haven’t done any since our last round of 40 a little over a year ago. I miss it so much - and the wonderful release he got each time we did a dive. I don’t think we have the long-term effects that you have, though . . . but the cost of that (which we paid out of pocket) was SOOO much less than insurance is having to pay for the Botox injections. Wish they would cover dives for CP, because we would continue.
Keep an eye on my friend Alayna on FB. Remember, she was a dive tech at SLWC. She is working w/ a doc to start up a new clinic in SLC that is VERY interested in research-based HBOT. Maybe a chance for you to get back in it w/ Samuel???
Still keeping an eye on your work & progress . . thanks for the recent posts. I have missed updates.
Blessings,
LD
June 19th, 2010 at 11:30 am, Sharon Jewkes Says:
This photo of Samuel reminds me of the old song, “All I Want for Christmas is My Two Front Teeth”. What an adorable photo of him. I am so happy that he has improved so much.
With all of what your family has gone through, this statement from Pres. Gordon B. Hincley comes to my mind. It has certainly been a great inspiration to me the last seven months since Creig passed away.
“It isn’t as bad as you sometimes think it is. It all works out. Don’t worry, I say that to myself every morning. It will all work out. Put your trust in God, and move forward with faith and confidence in the future, The Lord will not forsake us. He will not forsake us . . . if we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.”
May the Lord continue to watch over your family. Sharon
June 19th, 2010 at 12:11 pm, Sharon Jewkes Says:
(I tried to post this earlier, but I made a mistake on my email address and it wouldn’t accept it. Forgive the duplicate in case it comes over this second time. I also made a typo on ‘Hinckley’ on the first one which is corrected on this one.)
This photo of Samuel reminds me of the old song, “All I Want for Christmas is My Two Front Teeth”. What an adorable photo of him. I am so happy that he has improved so much.
With all of what your family has gone through, this statement from Pres. Gordon B. Hinckley comes to my mind. It has certainly been a great inspiration to me the last seven months since Creig passed away.
“It isn’t as bad as you sometimes think it is. It all works out. Don’t worry, I say that to myself every morning. It will all work out. Put your trust in God, and move forward with faith and confidence in the future, The Lord will not forsake us. He will not forsake us . . . if we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.”
May the Lord continue to watch over your family. Sharon