Michael S.
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This is Michael. He was born on August 28, 2001 at 29 weeks. He was only 1 1/2lbs. at birth, so he has come a long way. His diagnosis is paradoxical vocal chord movement, G-tube, and CP. He was a twin, but his brother only survived for a few days.
Michael was intubated at birth and remained that way for 3 months with many attempts at
extubation and many self-extubations. After 3 months they finally were able to diagnose paradoxical vocal chord movement and he was trached 4 days later. It was a very scary time for us. We had been praying that he would be able to stay off the vent, and to find out that he needed a trach was terrifying. From
the moment he got the trach, he was off the ventilator and breathing on his own. It didn't take long for me to appreciate what a good thing it was for him. I was able to see his face without tape and tubing for the first time in 3 months. Two weeks later he got a g-tube because he had lost most of his ability to suck and 1 week after that he came home on oxygen. It didn't take long to adjust to life with a trach, and now it's just normal. Michael has 3 big sisters who just adore him. It has been a growing experience for all of us.
Michael started having seizures in July of 2001, at which time the neurologist diagnosed him with CP. The seizures were actually caused by the CP. We had him on medication for a few months while trying to find other methods of controlling them. Thank the Lord, we found out about craniosacraltherapy. After six sessions, he stopped having seizures, and has now been seizure free for 4 1/2 months. I took him off the medication just before Christmas, which, by the way had never actually controlled the seizures. We have continued the therapy because we found out that it helps with CP, and I can honestly say that Michael has had more improvement since we started that than he ever showed before.
Michael is now 18 months old, and life is really not all that difficult anymore. He weighs just over 20 lbs. He still has
challenges, such as feeding issues and, of course, learning to overcome the physical
challenges of CP, but he is doing wonderfully. He is very healthy and is just a joy to have around. The ENT is starting to talk about possible ways that we might be able to get the trach out... We'll see. We go in for a bronch in about 8 weeks and will discuss the options then.
Update, April 7, 2005: We took Michael down to California for a course of hyperbaric oxygen therapy (HBOT) in August of last year. We saw some wonderful improvements, especially in how strong he is. He was able to start pushing up into 4-point for the first time. Unfortunately, we have not been able to continue treatments yet, but I expect that to change soon.
Michael is scheduled for a cartilage graft surgery next week on April 14th that will hopefully be the first step in getting him decannulated. They will take a piece of cartilage from his ribcage and put it between his vocal chords to open up his airway. We are praying that it is very successful and that there will be no complications.
We are also pursuing a type of treatment called Neuro-Cranial Restructuring (NCR). I have spoken with people who have used this for their children with CP and it seems to be another very good option to try. We will be going up to Washington in September for that.
I have made a website for Michael that gives detailed information on what we have done and what we are trying. If you would like to check it out, the address is www.michaelsjourney.org. I have all my contact information on there if you have questions about anything.
I will post another update some time after Michael's surgery next week.
Update May 13, 2005: Well, Michael had his surgery about 4 weeks ago. It seems to have been successful, but he didn't react well to the anesthesia. He is doing well now, although he still has a bit to go before he's completely back to where he was physically before the surgery. He's moving a lot of air around his trach now, so we are very hopeful and praying that decannulation will happen soon. I have updated his website, if you would like the full details and I will try to continue updating it as he progresses.
