We’re still here, we’ve just been a little busy living life these past few weeks. We have been appointment free for the last 18 days! That is the longest break from the medical world we have had in over a year! These last few weeks have been a much needed break for all of us! Health wise we are all “healthy” including Lucy, somebody please knock on wood or something like that. Lucy is having difficulties with her tube leaking , tolerating her feeding rate, and cutting eye teeth; all of these add up to some pretty wicked nights of no sleep, but she is “healthy”! I am happy to report that all but one of her eye teeth have come in, so I do believe that there is an end in sight; tonight would be great for me Lucy girl. As for her tube leaking, we are going to have it replaced on Monday. Our hope is to have a Mic-Key button placed which is a low profile button that has a connector tube that locks in when in use and comes off when not in use. Right now Lucy has a very long flexible tube that hangs 8 inches from her belly, she can literally trip over it. We will have to see what her GI doctor has to say on Monday, but I am going to do my best to persuade him to allow this for Lucy. Feeding rate, well that’s been a year long battle, can you believe that it was a year ago that we started her on enteral feeding? If I had to guess,I think that Lucy’s reflux medicine needs to be adjusted. She is waking frequently after falling asleep, this pattern was what she used to do before going on a reflux med. I’ve said it before, it is difficult to decipher what is ailing her at any one moment, but we are getting better.
On Friday Lucy will be getting a brand new pair of articulating AFOs with butterflies and pink Velcro, these are orthotic leg braces that will bend at the ankle. Right now Lucy has SMO orthotics which support her ankles. She was casted for her AFOs at the end of October after her neurologist observed her gait and agreed with Lucy’s PT that AFOs are the way to go with her. Lucy hyper extends her knees and clenches her toes all in an effort to help her balance, all of this extra exertion of energy is not good for Lucy’s muscles. One of our main concerns with getting her articulating AFO’s is the extra weight on her legs, any extra weight just acts like anchors. Just the other day she tried on a winter coat which had a little bulk to it, she just stood there swaying back and forth for a few seconds until she fell down on her bottom. She looked cute in the coat, but cute literally only goes so far.
We started Lucy on Levocarnator, it is another supplement in the mito cocktail that is said to help assist mitochondrial function. One of the side effects of this medicine is “fishy”smelling diapers. Oh just when you thought dirty diapers couldn’t get any worse, they do! Lucy’s newest sign is the the sign for P.U. , even she understood the need for this sign.
We are getting ready for our “big trip” next week. I still have a lot of planning and organizing to do, but it is not taking away from our excitement. Drew and I have been sharing secret glances at one another whenever the kids talk about going to Florida. They have each asked if we can go to Disney World while we are down there. Our response has been, “wouldn’t that be fun?” They are thrilled to be able to spend Thanksgiving with our extended family, so we can’t wait to see the look on their faces when we tell them that we are going to be spending a week at “The Happiest Place on Earth”.
Before we leave, all of our kiddos will be getting their H1N1 booster shot on Tuesday. Knowing that they have protection from this illness gives us peace of mind. Keeping everyone healthy is in all of our best interests but especially Lucy’s. I have to applaud our kids with their hand washing efforts, they have been giving it their best!
This is getting to be rather long and I am wiped. I’ll leave you with a picture of this little sunshine.