Friday, July 18, 2014
I honestly did not realize it's been almost a year since I updated Desi's blog. I am not even sure anyone even reads it any more :-( If you're still out there reading, I am going to hit on some of the high and low points of the past few month. First of all, since I haven't updated my last post, it was determined that Desi should receive some pretty intensive speech therapy to see if her palate issue would resolve itself. We actually go July 30th for them to do more speech testing and to look more closely at her palate. Her speech HAS improved over the school year and we have seen tremendous changes, so we are hopeful surgery will NOT be required. In January we decided it was time for Desi to get her first prosthetic. Everything that could go wrong, did :-( She was too small for a liner that could be purchased "off-the-shelf" so we had to do a custom-made one. This.took.FOREVER!!!! We finally got all of the molds sent to the manufacturer in Canada and when they shipped it back to us, the FDA actually confiscated her liner in Memphis because they suspected it was involved in a drug smuggling operation. NO, I am no kidding. This really happened!!!! After a phone call to our State Representative, Kim Hammer, who called our House of Representative Tim Griffin in Washington, they were finally able to get the FDA to release Desi's liner and we received it the next day. She got her actual prosthetic arm the next week and things were going great until....... (you knew it was coming) the prosthetics guys tried a cream on her arm to help her get the liner on easier. Desi had what has been labeled as a SEVERE/DANGEROUS reaction to the cream and her poor arm, leg, face, neck and anywhere she touched with the cream, broke out in blisters and the most horrific rash you've ever seen. We ended up at Arkansas Children's Hospital. When all was said and done she had to take steroids and was given a cream to keep infection from setting up in the blisters. The prosthetics guys took her liner and washed it repeatedly with different cleaners; even leaving it submerged in concentrated alcohol for 10 hours. When we put it back on she once again broke out in blisters and so the liner that took so long and was so hard to get, is now unusable. $2800 down the drain :-( Instead of going through the trouble of making another one, we have decided to wait until Desi grows 1.5 cm and can fit into one of the off-the-shelf liners for $350. We're hoping she fits in one of these by the time school starts next month. After visiting ACH on July 30th for the palate/speech stuff, we will go back two days later to see the immunologist to find out what she is so allergic to and most likely be outfitted with our very own Epi-Pen. Ok, I think that's all the medical stuff, now on to school. Desi gets the chance to do Kindergarten all over again. She just wasn't ready for first grade and we all knew it. We have been working with her this summer trying to give her a head start for this school year and already we can see a difference. I think this was probably the best decision we could have made for her. In other family news, Jenna will be a 5th grader this coming year. Yikes, where in the heck did time go? Seems like just yesterday we were walking her into Kindergarten:-( Sniff, Sniff. Jordan graduated high school, moved out and will be starting college in the fall at Pulaski Tech. Devan has gotten many promotions since starting her job and is enjoying life with her boyfriend, Andy. They have been dating since January and we are all hoping for big things for the two of them if that is God's Will ;-) Steve and I continue to do our thing......parenting, working, parenting, working......yeah, that's pretty much our life!!! LOL Ok, maybe I can be better at updating now that I've gotten all this documented.