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Eliah 
Welcome to Eliah's Web Page. It has been provided to keep our friends, family, and faithful prayer warriors updated about his health.
Eliah is a very sweet, vibrant little boy with many health concerns. He has been a fighter from the moment of his conception, with many struggles in utero, and the fight has continued for the 8 years since his birth. He has a mitochondrial disorder, depends on a g-tube for venting/drainage and a j-tube for feeding and medications, receives infusions (for brittle bones) every four months, attends PT, OT, and SLP weekly, sees many doctors and specialists, but is the happiest little kid in spite of it all.
Journal
Wednesday, June 17, 2009 6:11 AM CDT If anyone still even comes to this page to check for updates, I have to apologize for not being more diligent in updating it, but I also have to say that I have tried over the last 3 months to update on at least 3 or 4 different occasions. At first, when Caringbridge changed their system, I couldn't figure out how to update. Then once I figured that part out, I updated and lost all of my work. And then again, I updated, couldn't finish it, saved it to another file and just discovered again this morning that the file got lost. All of that just to explain that I am going to try and get back on the ball and put updates here more often, and to say that I am so sorry for not being better about it.
The good news is that we can now say officially that Eliah has not been hospitalized for 2 years. He has had numerous visits to all of the various depts that he usually goes to and some new ones, and still has all of the same stuff going on, but nothing that has made him have to stay at the "Mooberry Hilton" and for that we are THRILLED!!
There has actually been a lot going on with Eliah...first of all he turned 9 last month and just seems to be growing up so much lately in so many different ways. He is playing on the miracle league again and loving it. His team name is Eliah "the Bulldozer" Smith. :o)
Medically he is holding his own. His motility seems to be worse as his j-tube backs up more than it used to (formula comes out rather than going in...wrong direction) and he is having a harder time with BM's lately. Thankfully we can increase his Miralax to help with the BM's, but as far as the intestinal motility, he is maxed out on Cisapride for now. Once he gains a little more weight, we will be able to increase that some and hopefully see some difference there too. I'll have to let you know about that.
He has been having incontinence issues (both bowel and bladder) for pretty much his whole life. He had 2 months where he seemed to "get it" and then he went back to having issues so we had some testing done recently to try and figure out why. Initially we thought that maybe he just didn't want to be bothered with stopping what he was doing, but then had reason to believe that it might be medical. They did tests on his urine to see if maybe there was an infection and all came back good there. Next they did a VCUG which is an emptying study to see if he could empty completely, and he did. Next will be one of two tests, either a pressure test (not sure of the official name) or an MRI. The pressure test would basically show whether or not he is having spasms in his bladder causing the issues we have noticed. The MRI would be done to see if he has something called a "tethered cord". Tethered cord is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. It is a progressive disorder. The symtoms that we have noticed from him are mainly incontinence (bowel and bladder), but also occasionally he has lower back pain that can also be associated with it. His sensory issues can also be one of the things associated with it. The information that I have read says that it is a neural tube defect during fetal development which would make sense because of all of the problems he had in utero. It would just be nice to find out what is causing the bladder/bowel issues...I don't want to be upset with him over being wet if it is something that he doesn't have control over, but I also don't want him to be lazy and just not wanting to stop what he is doing to go potty...so finding out would be most helpful.
His belly has still been a mess. Just the other day, after his shower, I started to get excited because the skin actually looked like it might be healing and then an hour or two later it was a bloodier mess than I have ever seen on him before. Ugh! The "possible options" that I talked about in my March update, that GI was considering for helping Eliah's belly are as follows (and the reasons that we are not doing them right now). One option was removing his stomach (talked about a long time ago)...the pros with this would be that he would be getting rid of something that does nothing but cause him problems...he doesn't use his stomach for food because it doesn't work to process food anymore...all it does is leak and burn his skin and produce too much acid. With his stomach gone, he would never have reflux again which would take away his aspiration risks altogether and spare his esophagus from further damage (should his nissen come lose). The biggest reason that GI doesn't want to do this is that it would be a pretty big surgery and Eliah has shown time and time again that he doesn't do surgery well (it's a mito thing). It usually ends up causing more issues than what it fixes. Plus, they are still holding onto the hope that someday "they" will come up with something that might work for him and once the stomach is gone, you can't put it back. So, the next option is a gastric pacemaker. This would essentially cause the stomach muscles to "squeeze" like they should be doing anyway (his don't) and cause the stomach to empty into the intestines and possibly even process some food. The concern with this is that, with his intestines already struggling to work enough to handle the formula that they are getting, what new problmes would adding more to that cause? They don't currently have a pacer that would work for the intestines. So we are back to pretty much doing like we have been...just treating symptoms and dealing with each day as it comes. He is about as used to it as anyone could be (he is such a trooper), but his belly hurts him pretty much all of the time and he spends most/much of the day holding it while he plays. This is hard to watch, but just something that is part of our life.
We had the neuropsycological testing done and though we didn't really find too many answers as to why he has had so many neurological losses throughout his life and had to work so hard to regain lost "ground", we got some different strategies for helping him cope with his learning difficulties. So far this school year, he has done better than last year, but we are still working to finish so that he can move on to the next grade.
THE MAKE-A-WISH TRIP...it was truly the experience of a lifetime! We met so many kind people and had so many different experiences. It was nice to have time away from home and away from our "routine" and take it somewhere else. The kids were thrilled with the limo ride, airplane trip to and from Give Kids The World, our villa, the parks, swimming pool, everything. It's hard to say what Eliah liked the most, but I'd have to say that the Amberville train station rated pretty high...this had remote control boats that you could drive from inside the building (so the weather and heat wasn't a problem for him), there was a dino-putt course that you could play anytime, there were model trains inside that you could push buttons to change day/night and move various parts of the "village" (HE LOVED THIS) and of course the train that he could ride any time of the day that went around the train station. There is a webpage where you can see pictures from each of the days we spent there, as well as pictures of the going away and welcome home parties that were held in his/our honor by both the Franklin Twp. Fire Dept. and Battelle Memorial institute. The address is:
http://216.136.50.63/EliahSmithMAW/
I don't know how to make that a clickable link. Sorry about that.
Quick update on Eliah's newest little sibling...the current due date for Noah is the 23rd of July. I go for appts next week to do an ultrasound to check amniotic fluid levels, as they have been running a little high, and then I also have an appt with the doc to see where/how things are going. I will try to update next week regarding this.
Please, please pray for Taylor...she is really struggling. In short she has been vented for a number of weeks and now (at least temporarily) has a trach. We also have another friend (a mother of 2 small children) that just found out that she has malignant melanoma (sp)...she doesn't know much about how bad it is yet, but is obviously frightened. Please pray for God's grace and peace in this and His healing for her.
Love,
Chelle
Read Journal History
Hospital Information: Children's Hospital
700 Children's Drive
Columbus, Ohio 43205-2696
(614)722-2000
Links: http://216.136.50.63/HenryAndEliah/Default.htm Eliah's Service Dog Page
http://www.caringbridge.org/visit/taylorlouisebrown Taylor's page.
http://216.136.50.63/EliahSmithMAW/ Eliah's Make-A-Wish page
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