Update

So I know every one's been waiting for this update so here it is....We saw the pulmonologist (lung)Friday morning and he was totally ok with her getting a kidney transplant!!!!! yeah! We were so excited to hear such fantastic news! He did want to get ahold of the nephrologist(kidney) and talk things over and make sure there weren't any more concerns. He also gave us a referral to see a geneticist(DNA) He thought it would be a good idea since no one knows why she has all of these problems. So hopefully we can get in soon and find out some more info. We also turned in the kidney transplant package so I don't know what the next step is but at least we've reached it! Brynnah also had surgery Friday afternoon she had he existing G-tube converted to a G-J tube (they extended the tube into her intestines) Everything went REALLY well. She didn't have any sedation and it was over within a half an hour! Can you believe it? I still can't and I was with her the whole time watching them torture my baby girl! She has such an unbelievably strong spirit!! I am continually amazed at her! On a good note she has been really excelling at therapies all of a sudden. She has quite the vocabulary (but, to our disappointment still isn't saying mom or dad) She's cruising all over the house and is starting to get more brave...like letting go with both hands for about 30 seconds!!! Before we know it she'll be rattling off sentences and running! I want to give a big thanks to the McConkie's for sacrificing their time and energy for Alisha to come with me this weekend it really helped out alot and we had so much fun!!!! So thanks Alisha you're an angel!

Brynnah and Hiccups

This morning Brynnah and I got up and did our normal routine. I babysit for some friends of ours their little boy. I usually watch him a couple times a week and Brynnah is so fascinated with him. Anyhow, after the baby got here for some reason I got the hiccups(I've been getting them every morning for like 4-5 days now...weird) Anyhow, whenever I would hiccup Brynnah thought it was hilarious!!!! She would even try to mimic the sound and eventually she ended up getting them herself...I just thought these pictures turned out soooo darn cute of her laughing at me!! My sweet little chicky!! I love her so much and continually amazed at how well she behaves and how she's just a little miss sassy pants! I love her little personality and am so continually proud of her. When she gets older and are able to read these posts she's going to be like" mom you're soooo cheesy!" I just can't get over how much she is starting to look like a little girl now instead of a baby!

World of the Pharos

A couple of weeks ago we went to the Museum of Idaho....we've been wanting to go for months and finally make it!! It was really neat I enjoyed learning about the culture at that time.
(your not supposed to take pictures....but we couldn't resist , everything was so beautiful or....morbid) This next picture is of like a special ern they keep outside of the mummified bodies and then they would take out their vital organs before the mummifying process would begin and store them in these containers. I guess it would help better preserve them. They had a sign posted that said that some of these erns actually had partial internal organs still in tact. (which it totally gross and totally cool at the same time!) or maybe I am just really morbid. Anyhow we had a lot of fun and would definitely return again!!
I just thought this dress was absolutely stunning!
This is just one of the paintings that I thought was gorgeous! I just loved all the colors and the artists detail.

Update

Wow I totally feel like all we do is update people on what's going wrong with Brynnah. So this week was spent in SLC. Brynnah had a sedated echo(ultrasound of her heart) which I'm assuming that all is well because we never even saw a Doctor weird huh? Anyhow I guess they will contact me if they find something disturbing. Brynnah also had her Nephrology(kidney) appointment later that afternoon...and everything is ok...her kidney function has gone down a little bit more and she has only gained a couple of ounces...and she has NOT grown at all since last month which is totally a bummer but we kind of expected it as much as she throws up all the time. Anyhow I had to practically beg the doc to let Brynnah have the surgery to make her g-tube a gj tube(it will go into her intestines so that she can't throw up) So finally after having stood up for myself and my daughter she will be having the procedure done next Friday afternoon after her Pulmonology(lung) appointment...so YEAH!!!!! The Nephrologist also says if everything is completely fine with her lungs(which they aren't so we're not crossing our fingers)that she might be able to have a kidney transplant done in August!!! so it's excited but like I said we're not even going to think that positive until after we see the lung specialist. So to get the ball rolling anyway they are sending us the kidney transplant packet that we have to fill out...so that's good at least we're doing something! For those of you who don't know Ryan left Father's day to POST academy in Boise for his job. He will be coming home this EVENING!!!!! I'm so excited I thought he wouldn't be coming home for another couple weeks! He will be graduating July 18th !!! So we've got a few more weeks to go but all in all it will be a good thing! I guess that's it for now and I will definitely be posting next week to let you all know how the lung specialist goes.

Best DAD in the whole world

I love my husband he's soooo cheesy! For Father's day...we celebrated it early as he had to leave for post early Sunday morning. I got Ryan a game for the wii...which he got really early so he would have time to play it...i guess he LOVED it because he beat the whole game in like 3 days!!! He also got a TRANSFORMERS watch and tee shirt! He was sooo excited as you can tell by the cheeser grin on his face!!! This post goes out to you hun...you are the best father ever! and Brynnah loves you soooo much. We are going to miss you so much and can't wait to see you again. I love you with all my heart and am so grateful for all you do for me. I am so extremely luck to have married the man I've been in love with almost my whole life!!!! So thank you for picking me and giving me the most Beautiful daughter in the whole world!! I love you!

Rough Night

The other night we put Brynnah down at her usual time (around 7:45 pm) she went down really well but kept waking up! Which she never does so I was in and out of her room most of the night ...I guess it was a good thing that I didn't take my sleeping pill that night so I was up anyway! I'm not joking she was up every couple hours just crying my heart went out to her I just felt so bad because there wasn't much I could do for her! Any way that day I layed her down for a nap and she slept REALLY good ....imagine that! She had been sleeping for a couple of hours so I decided to wake her so she would go to sleep that night. I put her on our couch and went to check my email...it got really quiet usually that means trouble but in this case this is what I found! I guess she wasn't entirely done with her nap! I felt so bad for her and she looked so peaceful I didn't want to wake her ....and I didn't! Thank goodness she only slept for another half and hour. And to top it off she slept wonderfully that night!!!Yeah!

Our little happy camper

We went camping this past weekend with my Grandpa in Montpelier. We had a ton of fun and so did Brynnah. She thought she was really stylin' with her sunglasses on!

And of course she had to have her ugly monkey with her!

It was unfortunately horrible weather the whole time we were there. The sun would come out for a little while then it would start to rain and then eventually it snowed... what else should we expect from being in montpelier!?! While it was snowing on Saturday we ended up jumping in the car and waiting it out for a while....even Kirra wanted to be inside! Needless to say we went into town that night and got a descent sleep and a hot shower which was excellent!! But even though the weather wasn't cooperating we still had a good time....hopefully we can go again when the weather's better!!

Brynnah and her Papa

My Grandpa came into town about a week ago and came to see us. Brynnah had soooo much fun...especially with her papa's hat! She kept taking it off his head...so he finally gave in and let her play with it. Once she had the hat she wouldn't put it down! For some weird reason she liked sucking on his hat...Yuck! But whatever as long as it made her happy.
All in all it's safe to say she LOVED her papa's hat!!!!!!

Update

Hey everyone! It feels like I haven't posted anything forever! Just wanted to update everyone and let you all know how things are going. Brynnah is doing much better since the whole super dehydrated fiasco...she's still throwing up at least once a day and I talked to the Nephrology(kidney specialists)clan and they were thinking possibly another surgery. It would be to make her existing G-tube an GJ-tube(which means that the tube would be placed in her intestines instead of her stomach) so she can't throw up! Which would be FANTASTIC...but it's still another surgery. They were going to get ahold of me this week to talk over what we want to do...so I will keep you all posted. As well as having a renal appointment on the 18th of this month she will also be having another sedated echo(ultrasound of her heart)to make sure everything is still going ok. She also will see the pulmonary specialist the end of the month!!!!YEAH....finally! So I will also let you know how that goes. Brynnah is still doing lots of therapies...she just got approved for speech therapy for talking...and it's going really well! She has also been cruising furniture! She goes all over the place which is fantastic and a huge accomplishment for her and we couldn't be more proud of her progress. The growth hormone shots seem to be working well...I don't know that she's gotten any taller since last month but we certainly hope so! I think that's about it for now...but I will definately be posting at least next week.