What a great Christmas we all had! We are so blessed!
Believe.... Prayer Works!
"I firmly believe that the disability doesn’t lie within the child, but rather within the heart of the beholder."-Praying for Parker
Today Makenzie and I spent about 5 hours at the clinic waiting for the finishing touches to be put on her power chair.
This is my 1000th post since October 2nd 2007. I started updating on Makenzie's health and recovery on My Space. At the time it was the popular platform. I had no clue what it was or how it worked but a few of my friends did. So after a few lessons on how to set a site up, Makenzie's Miracle was born.
Over the last several years Myspace turned into Caringbridge and Caringbridge turned into Blogger. What a ride it has been and even after 4 years I am so amazed and honored that so many people continue to check on and pray for Makenzie.
One thousand posts ago Makenzie was seven months out of her accident. She had proved to us that she had more fight in her then an one person I know. God had shown our family the miracle of life and Makenzie was stable. We had a rough start with much neuro storming and a very unhappy baby girl who cried day and night unless she was sleeping which was rare. Makenzie was unable to comfort herself and getting her to sleep at times was a two hour affair. We had been to Arizona two times for Hyperbaric treatments and had completed a round of sensory learning. During our first trip to Arizona Makenzie confirmed that she remembered who I was when she cried as I walked out of the room and she moved her legs for the first time on her own while taking a bath. On our second trip Makenzie began turning her head away from her toothbrush when I tried to brush her teeth and began looking towards sounds. She regained a decent amount of head control and also started smiling again!!!
My family's life is busy. Being a mom to four kids there is always something to do or somewhere to go. Some days I feel like I live in my car and trust me it looks the part.
I have been noticing over the past year that it has become increasingly harder to just get up and go. Makenzie is topping the scales now at nearly 40 pounds and is getting taller my the day. This increase in weight and height is a REALLY great thing unless you are talking about traveling with a kiddo who can not help at all.
It has become increasingly difficult to get Makenzie and all of her equipment around town. There are many times that I just don't go somewhere because it is to much work. For example, today I has an appointment across town. I had loaded and unloaded Makenzie and her chair 3 times and wrestled her into the car seat twice. We hit some traffic on the highway and ended up taking a detour onto the side streets. I found myself staring at my eye doctors office building. I really needed to just stop in to grab a new box of contacts but the thought of taking the wheel chair out of the car, getting Makenzie out of her car seat, lifting her into her wheelchair, positioning her hips, strapping her in, walking into the doctors office for 5 minutes, lifting Makenzie out of her wheelchair, lifting her into the car, and wrestling her back into her car seat, was too much to bear so I passed right on by. At this point one in, out, in, out series is all my body can hand at one time.
To add icing to the cake Makenzie is getting her power wheel chair in a couple of weeks and weighing in at over 150 pounds that sucker can not be lifted....... at least not by me! LOL
I have known for a long time that our family would need a modified van. I really was hoping to wait a few more years before we bought one though. However, to keep Makenzie safe and prevent my body from potential injury and the inability to care for Makenzie caused by injury we have decided that purchasing a modified van is something that needs to be done as soon as possible before I get hurt instead of after.
Me, Consumer Reports, and Kelley Blue Book have become best friends. I have learned about the safety ratings for all the major vans that companies convert. I have called about a dozen conversion companies. I have learned the difference between direct dealers and the dealer network. I have found out that crash tested does not always mean after modifications. I have familiarized myself with the pros and cons of both the side and rear entry conversions. I now know that there is a 10", 11", 12", and 14" floor drop depending on the company and the model. Not to mention there is also the option of a full lowered floor and a center lowered floor. I have learned that Honda has the best safety rating, has the widest conversion, and is half the price to insure then the Dodge. I am on information over load.
A few days ago I had the dealer bring a long channel rear entry van to my home. On paper I was convinced that the rear conversion was going to be the best fit for our family. Wrong. The biggest issue I have with the rear conversion is the fact that the only belt available to the wheelchair user is a lap belt. While the chair is fastened into the floor of the van, and there are straps holding Makenzie into her chair these straps are not intended for the force of a crash which would potentially leave her whole upper body unprotected. The other major issue I had was how much work it to to get the chair secured into the van because of the seat on either side of the wheelchair tie downs. It really was quite the process.
So today I decided to go down to the dealership. I looked at more conversions then I can count. We put Makenzie in the side entry and the sales person showed me how the seat belt works on the side conversion. Lap belt.....check. Shoulder belt...... check. A much happier mommy..... double check!
We then looked at some specific vans and I think we found a winner. It is a Honda with the right conversion and very low miles. It is on consignment and as of tonight the woman who owns it is considering dropping the price a bit to make it more affordable for our family.
I have been trying desperately for the last 3 days to get caught up on life. There are so many people I need to call, laundry that is growing once again into Mt Everest, clutter that is collecting on every surface, and errands that need desperately to be run.
It seem though that every time I have it in my head that I am going to work on the above tasks something stands in the way. I refer to this as " The Catch Up Game"
Saturday was one of those days. I had nothing that needed to be done so I gave Makenzie an afternoon bath before lunch in preparation to have a free afternoon to work on laundry. After her bath I decided to do a simple and routine g tube button change before I got her dressed. I popped the button out and 20 seconds later I could not get the new button back in. Try as I may and try as I might for a good 20 minutes no amount of pushing or prodding would allow for the feeding tube to be reinserted.
So off we went to the ER. Wet messy hair and all.
The hospital did a great job of getting us right back. We tried once again to get the tube in and when that failed we went for a smaller catheter. It slid right in. My heart felt much lighter! Then we slid a 14 french catheter in which is the same size as Makenzie's button. However after about 15 minutes we still could not get the button in. There was much talk of many different options many of which did not have us leaving with the problem fixed. Again my heart sank. This was supposed to be easy.