Saturday, September 19, 2009
Ok so I am finally updating again! I know all of you have been anxiously awaiting new info on our family!! haha! Not much new actually (which has been FABULOUS) We went to SLC last week for appointments. We got labs which were good. Then off to see the docs at kidney clinic. Everything was good there too! Then we had to go to the lung specialist. Which went ok, he requested that we get an oximeter....which they submitted a request a couple weeks ago and it was denied by the insurance. They said she didn't qualify! Isn't that rediculous??? So we will see if they approve it this time! Other than that she is still on 2 liters of O2 and doing well. She has been continuting to do well in her therapies and has started to walk agian without any help. So out came the little stroller to push along all of her equipment! She also got a new backpack for her feeding pump. So she sports that now too and does so well carrying it around even though it probably weighs almost as much as she does! She has definately developed some independance and is a little bit sassy! Go figure she is turning 3! I still can't believe it I think I'm in denial! Brynnah will be starting school next month after her birthday! I'm so excited for her to be able to be with other kids her age and to develope some socail skills with people other than doctors! Our trip to San Diego is getting close and we are sooooo very excited. Brynnah doesn't get it yet....but she is going to flip when we get there!! Ryan has been working away and of course bow-hunting! He took some days off so he could go to Montpelier to hopefully get his animals. He hasn't had any luck yet but he still has time! He's also been doing some work on his parent's addition on their home. So he's had plenty to do. My Grandpa also is in town for a couple months and Brynnah is just LOVING it!!! I've been busy doing the same things....jewelry making, crafting, sewing, and getting Christmas stuff done! We ended up going to the Fair in Blackfoot on Labor day which was a HUGE mistake!! There were so many people there I felt chlostrophobic....is that possible when you're outside!?! Anyhow, Brynnah had a ton of fun and LOVED seeing all the animals...she even got to pet some! Well, I guess that's about it. We love you all and a big THANKS for all you do!
Friday, August 21, 2009
Ok....are you ready for the longest blog post in the history of blogging????? So we have been home ...well sort of...for a few weeks now. Everyone is doing really great! Do i have an AMAZING family or what!?! Brynnah is just the most strong willed little gal I know!! She is doing soooo much better so much sooner than we anticipated! She is starting to walk (she lost a lot of ground after being sedated and immobilized for what....almost 5 weeks!) loves to push things around, and is crawling like crazy! She has also begun EATING! Now if that isn't a miracle I don't know what is???? She eats at least 2 meals a day (like 3 oz each feeding) which doesn't sound like much to most of you...but if you know Brynnah you know what a huge acomplishment it is! She also is ASKING for food!!! She is also become somewhat of a chatterbox! She talks non-stop and doesn't care who it is...she will just start talking up a storm about animals or colors or whatever she feels like repeating. And overly thrilled when everyone tells her how smart and cute she is! She has also grown a TON...they had to decrease what she's getting in her feeding tube because she keeps gaining weight. Daddy's kidney is still plugging away and doing fabulously! Labs have been great and there's no sign of rejection. This week is our last week of going to Salt Lake every week....which is pretty exciting for me....I Hate going up there all the time! She will be going every other week now! She did have a little setback last week and required more oxygen...she came home on 1/2 a liter and now she's on 2 liters...bummer I know...but I would rather have her breathing well on more oxygen than not breathing...! Ryan is doing AWESOME! He's been back to work for a few weeks and has been on regular duty the last 2 weeks! He sure is a trooper! I have been keeping busy catching up on scrapbooking and christmas gifts. We are doing the final planning for our big trip to San Diego on the 7th of October....we are way excited and can't wait to get to go on a VACATION!!! We are extending our stay and will get 6 whole days to do whatever we want! We are also preparing Brynnah to start pre-school...is that CRAZY or what!?! Other than that just alot of appointments, medication, and more appointments!! Thank you all for your love and support...we sure love you!
Friday, August 14, 2009
Chillin at the PCMC
Friday, July 24, 2009
Sorry I haven't updated sooner....so here's the scoop...Brynnah actually is being discharged tomorrow!!!! Bad news is....is that we have to stay in SLC for another week. They kidney specialists want to see her twice a week for the first week and then once a week for a month. After that if there aren't any problems we go to every other week and finally once a month! We're soooooo extremely excited at the prospect of going home soon. I can't believe the whole summer is almost gone...it's kind of been nice in a way...I HATE the heat. And...it will be closer for our vacation to San Diego!!! Brynnah has been doing really well! She's been doing a lot of therapies here in the hospital...so hopefully that will make things a little easier when we get home! She has lost most of her muscle and strength in her legs...she hates crawling and refuses to walk or stand...but we'll get there! We've been doing some feeding therapy with her and I am amazed to find that she does really well with a spoon(which she never did at home with therapy) and she LETS me brush her teeth and will "open wide" on command!!!!!!! I'm sooooo surprised at her improvement already. She is definitely a whole new girl. Of course all the nurses, doctors and staff just LOVE her and can't get over her extremely mellow personality. On the ICS (immuno-comprised unit) when we leave the room she has to wear a mask...which she absolutely loves and insists on wearing it even when we are outside and she no longer needs it...she also sports her very fashionable Tinkerbell shades(which she also insists that she wear with her mask...even inside!) Ryan went back to work this week and is loving the fact that he has something to keep himself occupied! He's such a trooper! I tell you what I have the BEST family in the whole world! I am definitely so blessed! I'm so grateful to have my little girl back to her somewhat normal self and to see her get stronger and better every day! Thank you for your prayers they are what really kept us going... Lots of Love.
Thursday, July 16, 2009
Extubation!!!!
So they extubated Brynnah last night and she is doing really well. She is soooooo excited to not have the tube down her throat any more. She is now back on a nasal canula at 6 liters. She has been sitting up on her own and still is a little wobbley but doing great. They had PT come in this morning and work with her. She did really well and the therapist was really pleased. This afternoon she was sitting up and pulled herself into the crawling position and moved forward a little bit to reach one of her animals. She loves to be playing again and was really excited to watch he "hippo movie"(Madagascar 1 & 2) again. They are planning on moving her to a different floor in the next couple of days and then if things go well she might be able to be discharged by the end of next week. We really appreciate everyones prayers and look forward to seeing everyone again. We love you all.
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