Long Over-due Update

Wow! I guess I hadn't realized how long it's been since I updated the blog! Let's see....Thanksgiving Ryan had to work...so Brynnah and I wen to Salt Lake to his sisters. We had a great time and of course lots of good food! Ryan said that they had a good thanksgiving dinner at the jail too.
Ryan: has just been busy working. He's getting ready to change shifts so he will finally be able to go to church with me!!! He's also been going to TKD (Tae Kwan Do) class as much as he can. He will be able to test for his 4th degree black belt in a couple years so he's learning all his forms and practicing ALL the time! Ryan also goes down to Bear Lake quite a bit to help his parent with the addition on the house.
Jacqui: I've been busy with Brynnah! As always. She still has therapy a few times a week, and she has school twice a week...so that means really early mornings...we have to get up @ 6! Other than that I've been busy getting everything done for Christmas! I made a lot of stuff this year...silly me! It seems like that's all I do....is make stuff for Christmas.....I usually start right after Christmas so I don't ever have to hit the after thanksgiving sales, and I don't have to do any last minute shopping!
Brynnah: Started school and is LOVING it! She is so excited to "ride the bus". They have a small bus that comes right up to the house. The bus picks her up @ 7 and drops her off @ 11:30. I thought I would have a harder time with her being gone that long ....but I totally love it! We had a meeting a couple weeks ago with her principal, teacher, and therapists. They discussed new goals for Brynnah for the next year. I'm really excited, we have some good goals set and I can't wait to see her progress! She's doing so great, all of her appointments are going great and her kidney is still doing FABULOUS! Her speech has showed really great progress the last couple of months. She is saying 4-5 word sentences....a few months ago she was stuck at 2-3 word sentences. She has started to say more about what she does during the day, and is constantly following us around the house!
We had a really wonderful Christmas this year. We did the 12 days of Christmas again this year, which is always fun. Brynnah helped make sugar cookies and we had a blast...she totally made a huge mess but we all had fun anyway! We had Christmas at our house this year. My mom and her boyfriend came over the wed. before and we had dinner and opened gifts to each other. We did Christmas on Christmas Eve since Ryan worked the whole time. Brynnah was sooo funny. Every time we turned our back she was opening presents! She kept saying " I wanna rip it" It was so fun to have her be interested this year! We also sprinkled sparkles and oats (for Santa and the reindeer) My sister came down the day after Christmas and spent the night. We had a lot of fun together! We got some great gifts this year! I got Ryan a Karaoke machine...which Brynnah loved! I got a wii fit and my sister was exercising and Brynnah did too! Brynnah was excited about EVERYTHING this year. She got lots of books, an art kit, and a room done in Zoo Animals! We hope everyone had a wonderful holiday season. And best wishes for a happy and healthy new year!

San Diego Trip

So we are still in San Diego right now but will be coming home on Wed. We have been having a wonderful time. The zoo was a lot of fun and Brynnah really loved it. We think that she enjoyed Sea World more, though. The zoo was really tiring because of all the walking around we did. The place is really huge and we ended up taking the tour bus ride to see the the animals that were clear in the back areas. If you ever decide to go there you need to take 2 days to do it. It is too much for one day. Sea World on the other hand was a blast because we could walk around the whole park and see everything we wanted to. We did miss a couple of the shows that we thought Brynnah would have loved because of the scheduling conflicts. We did get to feed and pet the dolphins and we also had "Lunch with Shamu." Brynnah really loved that because we were sitting right next to the pool where a couple of the killer whales were swimming. They had a trainer out there talking about the whales and then she had one of them do a bunch of tricks. It was really awesome. There are so many thins there to do and so little time to do it all, but we still had a lot of fun.
We are really looking forward to coming home even though we have to leave this wonderful weather. I'll get more pictures posted another time. We hope you enjoy these ones for now.

Family Photos

So we finally did our annual fall photos, and I personally think that they turned out really great. Brynnah was having a fun time with the leaves. We didn't have time to go up one of the canyons like we wanted to, but they look great anyways.

We are also getting ready to try and do the San Diego trip again next week, so everybody keep their fingers crossed that nothing will happen this time. We will be posting some photos from that trip once we return.
Everybody is doing really well. I have doing a lot of canning this fall. Lots of jam and applesauce and I will be helping a friend with some grapes.
Ryan got his deer during archery season but missed his elk. They saw a lot of elk but only one that would give him a shot opportunity. Maybe next year.

We hope that everyone is doing well and is enjoying the fall weather.

You know I've decided that we really need internet at our house!!!! I hate that I can only update about once a month ...if I'm lucky! So lets see first things first...we had Brynnah's Birthday party on the 3rd of October and it was a blast. We did a jungle animal theme and Brynnah loved every minute of it! I made her cake this year and it actually turned out really cute...despite my lack of cake decorating talents! She of course got spoiled she got tons of clothes, not one but two doll houses! Not to mention a bunch of littlest pet shop toys! We had a good turn out of people and of course I think the big hit this year was the pinata (it was a monkey this year!) Even Brynnah got to take a swing this year! Last tue. the 6th we headed to SLC where the make a wish foundation put us up in a motel then we were to fly out the next morning....little did we know that Brynnah's body of course had other plans! I should have mentioned before that she had been fighting a bout of the flu/cold for the previous couple weeks. Her symptoms kept getting worse and I ended up calling her physician and the kidney docs in SLC. Unfortunately they had us go to the ER where we stayed enduring horrible tests and lots of "pokes"(as brynnah would say) we were there for 7 1/2 hrs. They finally decided to admit her to the floor where we were there for almost a week! So we totally missed our trip to San Diego...bummer! But we did get it rescheduled maybe next week or the week after! They really didn't find much while we were in the hospital...she got diagnosed with a UTI that progressed into her kidney, at one point they thought kidney rejection which scared us all! But then they found that she had a trace of rhino-virus and they figured between the two it was too much for her already poor immune system and poor little body. She hasn't had any fevers going on day 3 now!!! So overall we had a great time! ha! Thank you all for your love and support. Your calls and prayers! We love you more than we can ever express!

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!

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!

Jacqui finally got sick of her longer thick hair in the heat and decided to cut it off again. It looks super cute I think.

Chillin at the PCMC

So this is how Brynnah rols when she's finally able to leave the confines of her room at the hospital. She really loves her sunglasses.

Here she is with the cutest smile on her face. She's the prettiest girl in the world.

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.

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.

Also, so many of you have been going private lately and I always forget to send out my e-mail so that you can update me and give me an invite....so everyone that has a private blog send me an invite (even those who already have!) My e-mail is caywjacq@gmail.com

UPDATE

Things are finally looking up for little miss Brynnah! They switched her from the oscillator to the conventinal vent...(which means that her lungs are starting to look better and her body can handle less pressure being pushed into her lungs) They have been slowly turning down the settings... a little bit each day! The docs are hoping to take her off the vent next week! Wouldn't that be FABULOUS!?! They have also been letting her be a little more awake....it's so nice being able to see her big beautiful eyes! It's crazy how much I miss the little things...her bright smile, her laugh, and her little voice saying "hold ya". Ryan had a check-up today with the surgeon. They said everything looked good and to keep up the good healing! He also got the green light to drive so he will being going home tomorrow! he is sooooo extremely bored being up here in the room all day. So it will be nice for him to feel like he's doing something! For those of you who have offered to take care of my husband...I'm going to take you up on your offers. So PLEASE call him and bring him dinner...it will make me feel better! A never-ending THANK YOU goes out to all those who have prayed for us, are thinking of us and are currently giving us support! We love you all!

When Brynnah developed pnemonia they had to keep her very sedated...but at least her bows are cute right?

Ryan's stomach post-transplant.

Brynnah was really excited to "wash" her hands after surgery!
The staff made this poster for Brynnah...I thought it was sooo cute!

This is Brynnah right before they wheeled her back to surgery.

I got Ryan a TRANSFORMER for his post-transplant present...I gave it to him before the transplant...he was a little nervous!
I asked him if he needed the instructions to figure out how to transform....he said no...but I caught him consulting the instructions!

Here's Ryan's stomach pre-tansplant....

Brynnah had labs drawn before transplant. The lab techs spoiled her just a little! She thought she was really cool!
I made sure that Brynnah had her nails painted pretty before she went in for surgery...she thought I needed to have mine done too!

Saying HI to daddy!

update

Sorry it has taken me soooo incredibly long to finally get you all updated! life has been just a little more than crazy right now! As you probably all know Brynnah did have her transplant on Wednesday the 17th. Ryan did incredibly well. He was up and walking in no time! he really is "SUPERMAN" (I brought him a card and a balloon with superman on it) I'm so proud of you babe!!! He had a hard time getting out of recovery. He was on a ventilator for about 4 hrs. He was also on O2 for a couple of nights...but his O2 is great now and he's doing pretty well. He got released on Sunday, but had a really tough day! He was really sick to his stomach from the pain meds. His incision site got infected a little bit the other day. We took him to go get it looked at and they re-opened the incision and dry-packed it. He sent me a picture today and it looks a ton better than it did. He went home with his parents yesterday and is hopefully resting and taking it easy. Now.......the baby's update. She is having a really hard time with her breathing. She came out of surgery really well but was still on the ventillator. She developed viral pnemonia, which really can't be treated...she also had minor infection where her breathing tube is but they put her on antibiotics and everything looks better. They are trying to figure out what to do with her. The kidney docs want her to have a lot of fluid so the kidney doesn't go into shock. The regular docs want to "starve" her so that the lung infection can get better....one way or the other they have to do a sacrifice. The docs put her on a new ventillator that does all the breathing for her which is a bummer because they also have to keep her completely sedated. All of her labs have been really wierd and kidney function is going down. They have her on insulin because her blood sugars are really high. They gave her blood yesterday and she of course has tubes EVERYWHERE! They are also worried about her heart...the problem that they fixed when she was born looks like it's acting up so they are doing a lot of chest x-rays. The cardiology docs said they are fairly certain it's because of everything else that's going on right now...all the problems she's having is causing the heart stress and making it work harder. I talked to the doc not long ago and said ultimately if they have to choose they would rather see her on dialysis than have her gone....I think that's the best thing i've heard in a while. We had a really scarry episode on sunday...she decided she didn't want to breathe and her O2 and heart rate plummeted....they almost had to do chest compressions. Isn't it AMAZING all the technology they have now! I keep her very fashionable her nails are painted hot pink with sparkles and she has "hello kitty" ribbons in her hair. I'm so greatful for every moment i have with my sweet girl! I'm so thankful that she's stable now and everything is ok for now. I will keep you posted if anything else comes up. I'll try to post some pictures soon! Thank you so much for all your love, support and prayers. I know that Heavenly Father is answering those prayers and loves our family. thank you , we love you!

UPDATE

So....we are just over a week away from SURGERY......YIKES! I'm totally nervous so thanks to those of you have been a huge support for me! We met with the "Make a Wish" foundation this afternoon and Brynnah was approved for a trip....so we applied for SanDiego zoo/Seaworld. It will be happening in October of this year! We are sooooo excited! They pay for EVERYTHING....flieght, hotel, food, spending money the whole bit...what a great foundation right??? It will really give me something to look forward to! They are also sponsoring a walk for Brynnah in Pocatello the day after surgery...the 13th which is a Saturday. It's at the old town pavilion (where they usually have the farmer's market) it's $15 per person and you get a t-shirt, bread and milk will be provided. It's a 3 mile walk through historic down town area. It will be at 9:30 am (the walk will officially start at 10 am for those who have already pre-registered)for pre-registration or you can register online at idahowish.org and click on walk for wishes. The proceeds are going for Brynnah's trip. It's a really cool thing and those who can participate please do it would be a great help! Thanks again to those of you who are thinking of us, praying for us and putting our family's name in numerous temples! You all are wonderful and we are so blessed to have such fabulous friends, and family! We love you

MADAGASCAR on the brain

The first and second Madagascar movies are Brynnah's most favorite movies of all time! She askes for them from the time she wakes up in the morning to the time she goes to bed at night! They are also the ONLY movies she will actually watch the whole way through!

The ZOO

Here are some of Brynnah's FAVORITE animals at the zoo! I think her absolute favorite is the Zebra!!!!

SLEEPING BEAUTIES!

Graduation and the Davis family

The Davis' came to visit us....FINALLY during college graduation! We had so much fun even though our time was really rushed! The kids had the most fun I think. Brynnah got this princess tent for christmas from my sister. I always thought she was too little to use it...but we took a shot and put it up for the kids to play with and they had a ball! Even Trevor loved it and it's PRINCESS. They played the whold time...they really missed each other!

Our Little Drummer Girl

How can you get mad at such an ADORABLE face???