Friday, January 21, 2011

What a week it has been!!!

Do you ever have one of those weeks where you think you just cant handle one more thing to go wrong???  or  are scared to wake up the next day bc you are afraid of what will happen next???  We have one of those seems like it just keeps piling on and whew truthfully I'm exhausted!!
We have been dealing with HUGE cuts on Avery’s Medicaid that was suppose to take affect Feb. 1 (they have no bumped it back until April). Avery is on Tefra Medicaid which goes by each case and not by income..It is a huge process to get on and we actually had to fight for it along time ago and we won..some of you may have remembered that..Well anyways Tefra Medicaid was set up by Katie Beckett to help families deal with all the medical expense and to help keep there children home instead of in the hospital and such..Well how do the legislative  and all the representatives seem fit to make such huge cuts to affect the kids that need it the most…Just to give you an idea of what we will be dealing with ..they are cutting all of the therapies to 75 visits per year..that is Everything not just 75 visits per Speech, Occupational and Physical all have to share the 75 visits..and Avery is seen three times a 3*54=162 visits that she has a year…so that is 87 visits that she is going to miss a year..Just when we start to see some gain this is what happens..I have a feeling we are going to start to regress..and that isnt even the worst of it…They are going to make it retroactive which means from July,2010-to July 2011 can only have 75 visits…so when Feb 1 was going to come around Avery would be done with therapy until July..That right there is just sneaky and wrong in my opinion!!!!!! That is five months with out therapy..That is HUGE in Avery and other kids.  I'm sure they are just thinking what is five months..cant be that big of a deal..but IT is HUGE  trust me..What I cant understand for the life of me is why they are grouping Tefra Medicaid with regular don’t qualify the same way and it is a whole new ball game in my opinion..I think children and adults with disabilities should be the VERY LAST people to get affected.. So I have been kind of stressed out about all of this!!!  I simply just hate the government!! You would think that they would try to help us out and not make things worst for us..We really have enough to worry about….As you can imagine this has caused a HUGE uproar among many parents and we ARE going to fight this tooth and nail..I am Avery’s mother and her best advocate and if I don’t do anything then that means she is going to be hurt by it..and I will do everything  I can on my part to try to help her!!!!  So I'm in the process of getting a letter of medical necessary from her doctor and writing my representatives letters!!!
We also had another sleep study for Avery. This one was with the CPAP machine and to determine how much oxygen she can handle and so on..Can I just tell you right now that it was HORRIBLE!!!  I mean really, really HORRIBLE!!!!!!   When we first walked into the sleep lab she turned around and kept saying “no,no,no, no!!” Poor girl she remembered from the last one!!  Here she is starting to get hooked up with some wires on her face…
She is starting to hook them up in her hair.. The sleep tech that worked with us this time..must have been new bc she had to keep re-hooking them up..they wouldn’t stay and some she couldn’t find..urghhhh..a little frustrating!!!
She doesn’t look to happy???HUH??
This is her pretty much all hooked up…
Having a CPAP machine on is suppose to help you breathe better and well in Avery’s case that night it did not do made her worse!!  We maybe got a total of an hour of sleep.. Once a wire comes unhooked they have to come in and turn the light on and wake her up and re-hook her up…and also with the little white cardboard that they put under her nose and then the oxygen in her nose on top of that then the mask on top of that well that leaves little room for her nose in the instead of breathing through her nose and actually using the mask Avery breathed through her mouth the whole time and would wait for her spit to pile up in the back of her throat and wait until she was really gasping for air and then panic..and would shoot straight up and whip that mask off so she could catch her breath! Well finally after I had had enough I asked for a face mask instead of this and well of course they couldn’t find then they brought a little bigger mask in then what she was wearing in the picture..and it worked barely but it worked..bc at first it leaked way to muc h so we had to cinch that so tight to her head so it wouldn’t leak..She made it up to a five on the machine. They sent us home with the mask so we could desensitize her but I pulled the mask out and she took of running the other I have a feeling that it ruined her..she did like it well kind of until she started struggling to breath with it on…So we will wait until the dr calls and then we go and see the dr and then the home health nurse comes to our home and will set up the CPAP machine for us..Right now well we are just enjoying our sleep bc I see a lot of sleepless nights in my future..oh hum!!! 

Last week we other also all got hit with the stomach bug once again..Instead though it was both babies and Avery who had it..whew that was very tirining I realized I needed a clone of me..I have come to a realization that the hardest part of having twins is when they are both sick and puking and just want mom..they weren't happy that the other one wanted mom too!!!  I also had Avery who just wanted to be-baugh (rock a bye) with her mom too. So they all learned to share my lap and I was just glued to the rocking chair for at least 24 hrs..unless I had to get up to clean up puke or change a diarrhea diaper..its amazing how fast you can go through diapers when you have to babies with diarrheaSmile  Jared then got it too and of course he was on the couch near death as he would put it!!  Men always think they are near death when they are sick..but us moms well we still have to some how manage to take care of the house/kids/ and take care of ourselves while dying walking around I guess..haha!!
We have also hit a major milestone bank account is getting richer as I type this..My babies are done with when you have two of them on formula you go through that stuff fast and its so so expensive!!!  Oh yeah un top of the two sick babies they were also teething they BOTH got two new teeth and are working on two more…
We also went and rechecked her eyes..There is a little bit of some turning in one eye and we are going to keep a close eye on it and recheck it in six months..I thought for sure she had some more vision problems just bc of some of the stuff she was doing…like being really really close to the paper when she was coloring or trying to write or having her nose right in front of the tv when she is watching…or feeling with her feet while she goes down the stairs instead of looking but apparently the dr said that that part was ok..not sure if I really him or not . But I will just keep a really close eye on it and get a second opinion if I have to..bc with all the run around I been through with  drs.. I have learned that mothers intuition is what I go with not what the dr. says!!!
And finally to end our exciting week ..I spent last night in the ER with Avery. These pictures were all taken with my phone so they aren't the greatest at all…
Destiny was carrying her down the stairs and they fell the last couple of stairs..and  I went to go stand her up and she wouldn’t walk or put weight so at first I thought it was something her ankle bc that’s what looked a little swollen..well after I got to the ER  I looked a little closer to see her shin or tibia bone close to her ankle really swollen..If you look in the picture pretty much where you see the faint marker line{grin} on her left leg..that is where she ended up breaking it… You cant really see the swollenness or anything..
Starting to cast her up….
She couldn’t stop touching was sticky..and she kept signing yellow….The dr would put one roll on her and then she would sign more while he was doing another roll and then he did one more roll and she signed more one more time..she was really good and cooperated so well
She had her little  froggy legs all out and relaxed and then she raises her cast leg way out and up by her ear just a chillin Smile  It looked so uncomfortable!! She even got all the attention from the nurses bc they all had to come in and check it out..She loved all the attention of courseSmile My little social bug!!!
She is realizing that its very heavy and its not coming off..and she don’t like it
We are still having a pretty rough day today…She keeps touching it or when she moves it says owie with a little bit of a cry to her..enough to break this moms heart!!!!  I feel so bad for her..
She don’t really like to look at it..I asked her “Where’s your owie?” and this is what I got…. We just cover her up and then she forgets about it..well kind of for brief seconds
Avery's EI came this morning and Avery wanted to wear her sunglasses and was being a hoot with them…she was going to go and give her some kisses and says “ewie” and then backs up…HAHA!!!!
We go back next week to the orthopedic dr for her leg and we also go back to the sleep dr next week too..

Did you make it to the end with me??? Whew now you can see while I'm exhausted;~) I have to say sometimes I wish I would just have to deal with the diagnosis of Down Syndrome and not all the other health crap  stuff that goes with it..I can deal with Avery having  Down Syndrome not a problem…but all the other health stuff gets to be too much sometimes!!!! I believe that is one of the things is holding us back from adopting another one..For the last two years we have prayed and prayed about adopting another little girl with down syndrome.  If I get exhausted with all of Avery's medical problems sometimes I cant even imagine what it would be like with two and both having all the medical problems but in the mean time we will just continue to pray about it and see what God has in our future!!


Carmen said...


Amy said...

My heart breaks for you! Hope things get better soon!

Holly said...

I'm sorry:( But I have to confess while I started to get kinda stressed with you{;)}I laughed out loud about Jared being "near death"...