Virgil said, “The greatest wealth is health.” As a health teacher, I always had several quotes hanging on the walls of my classroom and this was one of them. It always stood out as a simple yet powerful quote about how invaluable good health is. Since then it has spoken even more truth as we have faced so many challenges especially this past winter with Faith’s health. I feel like we are in “the calm after the storm” right now. It is truly amazing to see Faith so happy and healthy! We haven’t been back to the hospital due to illness for over 2 months!!! It is nice to know we are just going there for a scheduled appointment and get to return home. Faith’s had several routine specialist appointments over the past month and all the doctors have said how good she looks. Faith is even growing better! She has gained weight and grown length-wise as well. She is 34 lbs. now and approx. 39.5 inches long! Yes, I can feel the difference! Her endocrinologist feels that the switch to “real” blended food is giving her much better nutrition. My biggest regret is that I didn’t make the switch sooner. Most importantly, we are just so thankful that Faith is doing so well right now and that her summer is off to a good start!
We don’t slow down much in the summer. Faith is doing a 4-week summer school program and we are continuing to do all the other therapies that she does outside of school. Horse, music, water therapies as well as regular OT and PT. These therapies are even more important in the summer since she has eight weeks of out school. We also have plenty of other appointments scheduled including specialist appointments and another wheelchair evaluation. We are really hoping that we can make some progress on determining what direction we should go with the type of wheelchair that would be best for Faith. She is not comfortable in her current kidkart and is often hurting herself due to her tone and chorea. Her growth is also affecting her fit in the chair. Eventually, she will get to the point that she is going to outgrow the chair completely so we want to figure out what chair is going to be the best option for her.
As Faith continues to grow, transferring and lifting is getting more challenging. We were so fortunate to get funding to get a portable ramp out our front door. This has been especially helpful for getting her on and off the bus. However, it still requires lifting her and the chair quite a bit since we do not have a ramp to get her and the chair in and out of the van. This is not too big of an issue yet because her current wheelchair (kidkart) isn’t very heavy. However, we know that chairs that we are going to need to consider are going to be much heavier. So that will be something to figure out once we determine what chair will work best for Faith.
Our bigger concern right now is the limited accessibility of our current house. The doors aren’t even standard size and the hallway is very narrow. We rent this house so it is not an option to do any modifications to make it more accessible. Even if we owned it, the expenses involved would probably not make modifications an option. Getting Faith in and out of her room requires twisting and turning sideways and getting her in and out of the bathroom brings the same challenge. Baths are just getting more challenging in general because Faith has outgrown her bath chair and the bath tub is not big enough for a larger bath chair. 34 lbs isn’t that heavy yet but due to Faith’s minimal trunk and head control it feels like a lot more!
We are hoping a BIG prayer will be answered and that we can sell our house in Texas this summer. This will hopefully put us in a situation to be able to start the search for a more accessible home. It would be wonderful to find a home that is more accessible and could get us by for quite awhile. A very open floor plan, wider doorways/hallways, a bigger bathroom with a walk-in shower or bigger bath tub and no big steps going in and out of the house would be great! Most likely at some point we will need to make modifications but the costs involved are just not something that we could even consider for quite sometime.
Thanks for all the continued prayers for Faith and for keeping up with her progress!
Keeping the faith,