Oct. 22, 2009

Ok, I’m going to try and keep this short in the event this doesn’t post I don’t want to retype everything. LOL!
This past summer has been very enjoyable for us although Danielle has declined a bit. It was become increasingly difficult to keep her comfortable. Typical meds to help someone don’t seem to work the best for her. No one, and I mean no one, can tell us how to stop the abnormal posturing she exhibits daily. Repositioning her doesn’t always work, meds don’t always work nor does a combination of the two. Sometimes the posturing is so bad that if I were to lay her on the ground the only parts of her body that would be touching would be her shoulder blades and the backs of her ankles. She is not moaning or seem like she is in pain but it can’t possibly be comfortable. I’ve been told that this usually is one of the last things noted with this disease……she’s been doing this for 8 months now. So who knows how accurate that statement fits this disease. The retching/vomiting continue daily sometimes hourly. I have been able to bring some relief regarding this issue, however, it is a hard decision to make because it can be a contraversial one. I had to decrease her fluid intake in order to stop some of the retching. Her gut is shutting down and just doesn’t need what it once did. Little by little she will gradually get less as her body rejects it. We’ve had to increase some of her meds as she has become accustomed to the old doses. Almost daily she will have an episode of profuse sweating and have a high heart rate in the upper 160′s. No one really knows why this is happening…only speculation, again because MLD effects each person differently.
Even through all of that she will occassionally give a big smile. Make A Wish granted her/our wish and installed a hot tub for her. The first day we got in it was on my birthday and she gave me 5 huge smiles. It was wonderful. I wish I could have bottled those moments up in a jar to open on a rainy day/night. She doesn’t always get relief in there either but I do believe she enjoys the time spent in there.
DIAPERS! Ugh, let me tell you about diapers. So back in Feb she had a picc line placed and with that she gained 10lbs. Before that she fit fine in babies diapers. Well one of our nurses took pity on us as she was gaining the weight and brought us diapers bigger diapers that she was able to get a hold of. Before that supply ran out I decided it would be great if our insurance company would cover these. Figuring they cover everything else…why not?? Right. So after 4 months of going back and forth w/the insurance company, researching a supplier, contacting and setting everything up the insurance company says “sure”. Oh how life couldn’t be any better…..so I thought. Ya see if I had to pay for these special diapers out of pocket it would cost us $180.00 a month. I get the first shipment of diapers and everything is going great until the insurance company called and decided to change their minds. The diapers aren’t medically necessary. WTF!!!!!!!!!!!!! They cover nursing care and everything else she needs but they won’t cover diapers. So now I have a month supply of disposable diapers left with the only option of going to cloth diapers. One of my other nurses works on a case who actually uses cloth diapers and she says they work very well. So I go online and find these things only to realize that Danielle will need XXL. Who knows how long it will take to special order XXL. Well divine intervention happened once again and I was able to order these things and have them delievered in a week. $500.00 later. I only got 24 of them. They are really cute and colorful. But what a pain when she has a bm. Needless to say there is a lot of soaking and laundry being done. One night I was rocking with her and she urinated through the darn diaper and onto the bed pad I had underneath her (I’ve learned my lesson a long time ago w/that), I asked her why now all of a sudden since we got these new diapers does it seem like she’s urinating more. Is it because I now have a lot more work to do…..LOL! She smiled and gave me the loudest vocal sound I’ve heard in a long long time. My beautiful princess is still very much aware of what is going on. Hahaha
Anthony is doing well. He just loves school and is doing so well in it. His teachers are always complimenting me on how well he’s doing. Wish I could take the credit for that but it’s all him. He always has been a very quick learner. We’ve had a bit of a virus floating around here. Anthony has been home all week w/a slight fever and productive cough. Danielle has been battling a slight fever too but hard to tell if it’s mld related or virus. People keep asking me if we’re going to get any flu shots or swine flu shots. Nope. Just not for us. I hope I don’t regret that decision but at this time I feel no need for it.
The holidays are approaching fast. It’s always bitter sweet around here during that time. I know the other mld families that read this completely understand what I’m talking about. The thought never seems to get easier thinking about what to buy Danielle for her birthday or x-mas. I try to do the logic thing but that doesn’t work well on the emotional side. I’ve learned that it’s impossible to think logically and be emotional at the same time. Ugh!
Well it’s Danielle and med time. After that a cat nap. I have no nurse tonight. I’ve had a rather diappointing situation happen and they can’t find a replacement for this evening so who knows you just might get another update at 2am. LOL!
Thanks for checking in on Danielle!!
Lots of love,
Megan