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.
Tuesday, October 15, 2013
Last week I was sitting in the car line to pick up the girls. The speech therapist came running out and asked me to park so we could talk. What she said over the next few minutes literally took me by complete surprise. She started out by telling me that she and the other speech therapist had completed some of Desi's speech therapy tests. Then she went into the details of how they both felt like Desi's palate was deformed and how they could hear air escaping from somewhere in her palate or her nasal cavity. No matter where it was coming from, it wasn't right :-( She has flaps of skin on each side of her throat that are NOT supposed to be there and if all of that's not bad enough, she tells me that Desi has NO gag reflex. Nada. Nothing. They couldn't make the child gag. Folks, that's not normal :-( I spent most of last week on the phone like a mad woman trying to make appointments with ENT's, our PCP, Arkansas Children's Hospital, etc. Thankfully (it's a God thing), the lady over the Cleft Clinic at Arkansas Children's Hospital called me back and was able to get Desi in for all of her testing on October 30th. She will have audiology testing, speech testing and then she will see a doctor that specializes in nothing but palate issues. Praise God!!! Taking in all of everything these professionals are telling me, Desi is "probably" going to need some sort of surgery. As to the severity of the type of surgery she will probably need, we won't know until after all the testing is done. We would LOVE to hear that even though she has a deformed palate, that surgery WON'T be required, but we'll just have to wait and see. That's what we are praying for, because I just don't want to put our baby girl through surgery :-( One other thing that has given us cause for concern. The lady at ACH also told us that Desi will more than likely have to undergo a full genetic workup. Since she has spina bifida occulta, missing her left arm, speech and developmental delays and now a deformed palate, they will want to rule out any type of syndrome she might have. The information we'll get from this workup will also tell us of any other deformities or delays she might face. I'm scared to know, but I feel like we NEED to know so we can be prepared and also on the lookout for anything else. We love Desi so much and will do everything we can to get her healthy. Your prayers are greatly appreciated!!!
Wednesday, October 2, 2013
Let's be real about Desi and Kindergarten. Things could be better. Desi is functioning at about the level of a 4 year old, which makes perfect sense according to the adoption specialists. She was in the orphanage for 4 years and it will take her 4 years to be completely caught up. She hasn't even been home 2 years yet, so this shouldn't come as a surprise, but..... Yeah, you knew there would be a but didn't you :-) We got Desi's interim report last week and she was marked "below" on her ability to listen and be quiet. I agree 100%. She has the attention span of a stick of butter :-) LOL We are also seeing this problem in dance class. She just can't seem to stay on target. Desi is also having issues with her sight words. She knows them, she just can't say them. Let me explain. We printed her sight words and put them on a table. When asked to find a certain word, she will pick up the correct paper without hesitation. We can then point to the word on her list and ask her to SAY the word, but there is nothing. She can't seem to transfer the information, even though she knows the words. The principal has explained that this is developmental and she will eventually be able to verbalize her sight words. We are still waiting on her speech and OT to start at school. I hope this will help in the area of her blending sounds, which is another area we are having problems with. Sigh. Oh, and we think maybe she is having vision issues too as she is almost laying on her paperwork to write her words. We get to see the eye doctor next week to have her tested. Some might say Desi is having a rough way to go in Kindergarten. Well, she might be, but she doesn't know it!!! The kid is having a GREAT time in school and gets mad every morning if we don't leave early enough :-) LOL She loves her teacher, she loves her friends and she loves doing her homework every evening. Is she oblivious to all the problems listed above? Yep, and I plan on keeping it that way. No sense in making her dread school every day, so we will just keep all these "issues" to ourselves and keep making school fun. And her "disabilities"......the ones that NO ONE even notices because her personality overshadows them....not even an issue :-)
Sunday, May 5, 2013
I have lots of pictures to post but those will have to wait for a different post. Desi is doing great!!! She is about to finish Pre-K in a couple of weeks and we have seen such amazing changes in her. Her teachers have both told me how far she has come socially, academically and even physically. All I keep hearing from them is how much they are going to miss her next year and how much joy she brings to their day. I'm sure it has to do with the fact that our child smiles....all day....literally. Well, that is unless Jenna ticks her off about something and then.....wow.....she has got one hot little temper!!! LOL We have seen progress in her speech, although it is obvious to anyone that knows her, she has a long way to go. Her language skills are off the chart, but she talks so fast and is a little lazy (in my opinion)that she will not pronounce her blend sounds correctly and has gotten into the habit of not finishing the words. You kind of get the middle part. Jenna has become a pro at translating and I can pick up quite a bit of it, but Steve still says he can't hardly understand anything she says. We are currently looking for a speech therapist for the new school year and one of Devan's friends is going to work with her this summer. We are hopeful that individual therapy sessions will produce some better results. One thing is for sure....she is READY for Kindergarten and cannot wait for the new school year to start :-) Devan graduates college this Saturday, May 11th. We are still in shock that the past 4 years have gone by so fast. She has applied for an internship with a business magazine in Little Rock. Unless they offer her something that she can't refuse, Devan has plans that will take her out of the country for almost all of 2014. It's called the World Race and she applied a few weeks ago. She will find out during the summer if she's been accepted or not. We are trusting that God has a plan and we will support her in whatever decision she makes. Jordan is finishing up her Junior year in high school. She is taking the ACT and we are planning all these college visits. She'll be getting senior pictures made this summer and getting ready for her last year at Benton High School before heading off to college. So hard to think that in a little over a year we will only have TWO children in the house. How in the heck did that happen??? LOL Jenna, well, she continues to do her thing. She's finishing up 3rd grade and each week gets closer and closer to her back handspring in gymnastics. One week she will almost have it and then the next week, she struggles again. It's been very frustrating for her but I know she will get it soon. She will definitely be one happy girl when it finally happens. Summer is just around the corner and it's already shaping up to be a busy one. Aside from college visits, we have Family Farm (Christian Day Camp), Vacation Bible School and vacation in Gulf Shores!!! Yeah, we're all looking forward to vacation :-) Hopefully I will be better at updating this blog when I am at home more this summer. Pictures coming soon!!!!
Thursday, January 3, 2013
Friday, November 23, 2012
The title says it all. SO much has happened and I have had such good intentions, but the blog has had to take a back seat to all the activities in the Malone house. I will try to catch up without writing a book:-) First of all, October 5th, Devan was named 1st runner-up at OBU Homecoming!!!! We were all shocked because there were over 30 girls in the running:-) Here's a couple of pictures: