Sunday, October 11, 2009

Latest news

Well, I know it's been an extremely long time since I updated this blog. Sorry about that. Things have been busy around here with working full time and trying to get two kids off to kindergarten every morning. Now that I have some free time on this lazy Sunday afternoon, I'll let everyone know how Charlie is doing.

After Charlie was released from the hospital at the end of August, he started school a week later than the other kids. The first day he went for half a day - mainly for us to determine if he had enough endurance. He did great and shortly after started attending full days. The first week was difficult, as Charlie walked much slower than the other children, could not run, climb, or play very well with the other kids at recess, and more importantly he was unable to sit comfortably for any amount of time. We tried different chairs and different pillows for him at school. Nothing seemed to work, so I contacted the physical therapist at the elementary school. She was able to observe Charlie and make some recommendations and gave him a cushion for the back of his chair. He has been using the cushion every day to sit comfortably. Charlie's teacher has been great in working with us and making some modifications for Charlie in the classroom. Our next major goal is walking to school. We live about two blocks from the elementary school. Charlie so desperately wants to walk to school in the morning with the other neighborhood kids, however, I know with his slow pace and the distance, he will be so tired by the time he gets there . . . so we drive . . . I'm hoping within the next week or so we may be able to start walking to school.

Over the past few weeks, Charlie has slowly been regaining strength in his legs. It took us several weeks to schedule a physical therapy evaluation and begin sessions for him, mainly because there is a limited number of pediatric physical therapy locations in our area. Charlie has now been attending physical therapy for three weeks, and it has really helped! Charlie's strength has improved. He is starting to run and ride a bike again. He can bend down now without having to hold on to something to pull himself back up. He is able to sit more comfortably in chairs without a pillow or back cushion. Charlie is slowly starting to put his shoes and socks on by himself along with putting his own pants on, both of which have been painful for him (I guess because the way you have to bend or pick up your legs to do these things.)

We have visited the pediatrician and neurologist for follow up visits. Apparently, Charlie's case was fairly well-known and discussed while he was at Texas Children's Hospital - not only because Guillain-Barre Syndrome is a rare syndrome, but also because Charlie is so young and because he experienced some symptoms that are not necessarily typical of Guillain-Barre. Unbeknownst to us, several more doctors and neurologists were interested in Charlie's case and were consulted for treatment. Although Charlie's strength is improving in his legs, he still does not have any reflexes in his legs (you know, when the doctor hits your knees with that little rubber hammer and your leg is supposed to kick out - Charlie has no reflex). The neurologist says this is typical, and it may take Charlie up to six months to regain his reflexes . . . interesting to me. The neurologist also recommended that Charlie not get his flu shots this year - he said because Charlie's immune system is still weak and recuperating. So, the rest of us need to keep our selves healthy and try not to get sick - we've been lucky so far!!!

Each day is a new day for us, as Charlie slowly gets better. We are slowly trying to wean him from his pain medication. He actually poured his nighttime dose down the sink drain one night and then woke up screaming and crying because his legs hurt so bad. Stinker! So we know he still needs the pain medication right now - we are just decreasing the amount he takes. He is taking a specialized medication for nerve pain, which is quite expensive. We've also received his medical bills from his stay in the hopsital. All I can say is OMG and thank goodness the insurance covers a portion of this!!!

Again, I thank everyone for keeping Charlie in your prayers. So many of you have been concerned and keep asking about Charlie. We're so thankful for the continued prayers and support. For those who have given us specialized chairs, seat cushions, and helped take Charlie to his physical therapy sessions - we thank you! I'm so very appreciative of everyone who has offered help over the past few months. We are slowly getting back to normal . . .

Although Guillain-Barre is a rare syndrome, it seems that everywhere we go, people have told us about someone in their lives who has experienced this syndrome. When Charlie got his haircut and had trouble sitting in the chair, the hairdresser immediately made some modifications to help Charlie sit in the chair more comfortably, because her grandmother had suffered from Guillain-Barre, and she was aware of the painful side effects. I worked with a 13-year old student last year who had this syndrome. I just found out there is another teenage student at one of my campuses who is currently suffering from Guillain-Barre. When we were at Texas Children's Hospital, there were about six other patients who were there with the same syndrome.

**** So, I end on this final note: Guillain-Barre Syndrome is a rare syndrome. It is typically caused by a virus or vaccination. During this heightened flu season, there is so much media hype about getting your flu shot. Although there are several advantages to getting the seasonal flu shot and swine flu shots, please be aware of the side effects when considering these vaccines, especially for young children. (Ask the doctor/nurse for the insert in the box for the flu shot - you'll be amazed at what is listed). There are several natural remedies to keeping yourself healthy. Make your own informed decision. That's just my opinion. ****

Have a great week, friends!!

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