Saturday, January 29, 2011

She got a shorter cast…Whoop!!! Whoop!!!

We went back to the orthopedic doctor this week…When the doctor in training (the doctor wasn’t even in the room supervising him)  went to go and cut the other cast off he ended up cutting Avery with the saw. She was doing just find and then all of a sudden she started shaking so bad and started screaming and I was like what in the world just happened…and he says oh sometimes the machine gets a little warm so that might be what she is feeling..well anyways when they took her cast off she was bleeding…{Yes you read that right} Bleeding where he cut her..Lets just say that I was NOT HAPPY at all!!!! and he tried to cover himself…  Then the dr.  guy put the saw down and forgot to shut if off and ended up getting the nurse too!!! 
Avery is trying to pick off her cast..she was not happy at all when they went to put another one on..she gave that guy the LOOK!!!! HA!!  The new cast isn't as hard as the first one so we don’t have to use the saw to get it off..They told her she can walk on it if she wants too..but she doesn’t..It almost seems like she is in more pain now with the shorter cast..It is also starting to unravel so we might have to go back there next week again…uurrgghhh!!!!

Friday, January 28, 2011

We got hit hard!!!!

We got hit hard …by another snow storm…it was actually awhile ago. HA!  I know I'm just now getting around to post some pictures from it..but if you remember I kind of had a bad week…so bare with me
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Six-Seven Inches to be exact depending on where you measured at…..The whole state basically shut down for a week..The kids had no school for a WEEK…It was insane!! Being from the Midwest it is a little funny when you hear the Governor call a statewide emergency for 6-7 inches of snow..HAHA!!!!!!!!!
I figured all you South Dakotans would get a kick out of these pictures of Destiny shoveling with a floor scraper!  HA!
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Avery once again had a blast in it!!!  She had a hard time walking in it this time though bc it was so deep!!!
I couldn’t keep Destiny and Brielle inside long enough…They kept wanting to go out sledding…It started out just snow then it turned into sleet and so everything started to get really messy then. So when you have ice on top of snow it makes for some really fun sledding SC way of course with boogie boards..hehe!!!! 
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Did you catch Avery crawling up the hill…Ha!!  She was so determined to go sledding and since she couldn’t walk in it she started crawling up the hill!!
Trying to ice skate on the snow!!  It actually worked pretty good!!
After many days of the snow sticking around and trying to come up with ideas for the kids to do something before they literally drove me right up the wall..We decided to color the snow!!!!
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Here a few videos of the kids sledding and don’t mind me in the videos..especially the last ones!!
Destiny and Dolly sledding and wiped out

Destiny and Brielle sledding w/ wipe out at the end!!!

Avery had so much fun sledding on her bottom on top of the ice…She wanted to go outside so bad one day with Destiny and Brielle and I told her she couldn’t go outside bc I didn’t want to bundle her all up right what does she do..she goes over puts her hat, and scarf and boots  on and heads outside..well I guess you can since you got dressed by yourself {grin}
Avery sledding on the ice snow on her bottom!!!

Avery sledding again on her bottom

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!!

Monday, January 17, 2011

Happy Birthday Jayla & Jianna

Wow!!!  Happy First Birthday to my sweet little girls!!!  Its been a crazy, crazy year..Having twins has its challenges but it also has so many rewards… I feel truly blessed to have twins!!!  Maybe when they start school  I will get to catch up on my sleep… But I have to say that I'm looking forward to the future and wouldn't really want to go back to bad!!!  But lets just go back in time for a little  bit….
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Aaahhh they were so sweet and boy did they love to cuddle up to each other..and to tell you the truth they still do..I just now separated them into there own cribs this past weekend and it was really hard on them and on me!!!  But it was time bc they were running out of room.. My girls really like to cuddle up to each other so they really had a hard time adjusting. If I had a bigger crib I would of kept them in the same crib..but I suppose once they get out of there crib I can put them both in a double bed so they can sleep with each other again:)
Jayla, Jianna
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Jianna, Jayla
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Jianna, Jayla
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See it seems like in a blink of an eye they go from a tiny newborn to my one year old little princesses!!!!  Where does it go?????   Really!!!!! 
Jianna, Jayla
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Jayla, Jianna
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We celebrated there first birthday with family!  Jianna on the left and Jayla on the right..Jianna had a pink cake bc she has has always been pink since the hospital and Jayla has always been purple since the hospital. Here's a picture just to help you remember what I'm talking about…{the hats}
Jianna, on the left and notice how clean she is and the picture was taken at the end..She is kind of my prissy little girl and didn't want to get dirty at all..she didn't like it!!!!!  So clean up was a cinch for her!!! Jayla on the other hand well as you can tell from the picture she had a blast with her cake and demanded a bath afterward!!! 
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So we stayed true with the whole color thing too when we had them open there presents..but as you can tell in the picture Jayla is way more interested in Jianna’s of course!!!! 
Jayla thinking Jianna needs some help opening her presents:)
Jayla really don't look real thrilled with hers..huh???LOL!!!!
Both of them going at it with this one….  
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Happy First Birthday my sweet little princesses!!!!! You girls are into everything right now, and driving me crazy many moments but its makes life very interesting!!!  You aren't walking quite yet no rush from me :o) but I know it will be pretty quick bc Jianna you are taking a couple of steps by yourself and you can go up the stairs too… but Jayla well you just get stuck at the  bottom of the stairs all the time and then just cry until you get brought upstairs:) See you got it figured out!!!!  I think you both figure why walk when you can crawl and you guys can boogie crawling..You both are very in tune to what the other one is doing..and don't really play nicely with each other..Jayla you are a little stinker and like to take pretty much everything away from Jianna. You both like the corners of your blankets..You will keep moving your blankey along until you find the corner to suck on..and rub with your fingers. We really cant go anywhere without them. I haven't tried but I don't want to either. I swear you two are one most of the time bc you do so much of the same stuff. You are both allergic to oatmeal. I have to say that over the last year Jianna was pretty much the first one to do alot of the milestones..I suppose being the first born she has that advantage over you Jayla. For the whole year you have both measured the same in length at your well visits and your heads were the same but the weight would be off by an ounce or two and Jayla you are always the bigger one!!! My bank account just got a little bit richer bc we have weaned you both from formula and are now on whole milk.  Next major milestone will be diapers..whew!!!!!  Jianna you are very vocal and I would say alot more vocal then Jayla..changing your voices and giggling alot more..Jayla tries to hold in her laughs it really is kind of funny..I'm looking forward to the next year with you two to see how much more you change from one another or if you two stay the same!!!!