Catch Up

Well it's been a day or two since I've been able to update! The laptop I had crashed, we've finally gotten a new one, so we're back in business! :)
BrynLee is doing amazing!
We had a great Christmas and actually got word over Christmas break that we'll be heading back east on March 30! We've decided to see Dr. Gearhart in Baltimore at Johns Hopkins Childrens Hospital! This doctor is so very praised in the Bladder Exstrophy community that I just couldn't help but want to go to him! We were originally told that he was booked out until June/July so we thought we'd have quite the wait but when she called and said they found time to see her, not only soon, but on a Saturday, we were extatic! We'll fly out on the 30th and early on the morning of the 31st they will do a cystoscopy. They take her to the operating room, put her under and the doctor will go in with a scope, look at her bladder, urethra, the inital repair, etc. and form his recommendations based on that! I already know she has a small bladder, I don't need any doctor to tell me that, so that worries me, but what can I do about it!?! We;re just excited to be going! To be seeking the absolute BEST care there is out there for our little girl!
BrynLee started physical therapy just after the New Year and has improved so quickly in the 5 sessions she's had that they have already decided to stop the visits! She rolls back to belly, belly to back right and left, all over the place! She's all but sitting up on her own and is now army crawling! We were using the Bumbo, which I love because she's sitting up, feeling like a big girl, but today she jumped right out of it! Guess it's time to put it away!
BrynLee has definately been a better teether, but she's in the process of getting all 4 top teeth at once! One is about halfway through, two have cut the skin, but can't quite see the tooth yet and 1 is still puffy and trying to come in! Even though she's being extremely tough about it, I sure hope it goes by fast! She refuses anything in her mouth, including food! I have to really coax her to eat! :(
Surprisingly, she's a chunk! She weighs 16 lbs and is 27inches long! I know this doesn't seem very big for some 7 month olds, but for our baby, she's huge! Lol..
At the end of this month, on the 28th, we head back down to Primary Children's for an ultrasound to check her kidneys! I know we'll get good news, because she's done nothing but improve for the last 2 months, but how good of news!? That her hydronephrosis has improved, or that it's gone!?! I'm hoping and praying for the latter! Healthy kidneys is our #1 priority with BrynLee right now! :)

Here are a couple of pictures from the last few months!

~Smiles~

BrynLee and Alvin,  her buddy from Primary Children's

She's beautiful!

Watching Mickey Mouse Clubhouse!

Santa Claus!!

Bein Serious

She loves her bottle!
January 5, 2012

Santa In The Studio

Abrey Adams Watterson of Abrey Adams Photography is hosting "Santa In The Studio!" on Dec. 16th and 17th from 5-7PM. Santa Claus will be in her studio, located at 1348 Overland Ave in Burley, both nights! Come get your picture taken with Santa for $10! Abrey is donating half of the profits from Santa In The Studio to help us get BrynLee to Boston!

For more informatio please visit her facebook page here.

Home Sweet Home

(7/17/11)
Being home has been such a wonderful feeling! I really had mixed feelings about coming home.. I was excited, but so nervous at the same time.. I wanted to be home more then ever, to hold my kids, have a normal routine, and finally relax! But in the back of my mind I was thinking, "How am I going to do all of this without a nurse!" BrynLee isn't alot of work, but when she was fussy and we had to be somewhere I just handed her over to the nurse and she would rock her until she fell asleep.. They always took care of her wound and emptied her urine bag. They taped the tube on her belly and they gave her all of her meds.. I was never there at night, we left by 10 and didn't come back until 7:30 the next morning! This was all going to be new to me!

When we got home BrynLee snuggled right in. She's my first baby that's actually like a bassinet! She's a quiet sleeper and doesn't really grunt or squirm unless she's going to wake up and ready to eat.. She likes the swing, but not for very long.. She doesn't like the binki, which didn't surprise me too much because neither did Aybri! For the most part, she's very easy.. She wakes up to eat, I change her diaper, she eats some more and back to bed.. She has gauze that needs to be changed with every diaper change and medicine that she has to take once a day!
The first night we were home she went to bed about 10:30, got up at 2 and again at 6.. It was nice because for some reason after we were home the exhaustion really set in.. I think it was because I finally let myself relax! At the hospital it was go, go, go - all the time, whether I was tired or not! At home I could finally sit down and I knew I didn't have to run around a hospital all day!
Yesterday (Saturday) BrynLee got her first bath at home.. I had Austyn helping me, so BrynLee was being a little impatient! We got it done as quickly as possible! It was so nice to have her smell like a baby, with yummy baby lotion, and not a hospital! Every day in the hospital I told her she'd like home so much better because it didn't smell like that stinky hospital! (Not that it smelled bad, just like a hospital!)
Saturday night she didn't sleep quite as well.. She slept until about 1:30, then wanted to eat every hour until 4:30.. Not sure what that was about, but hey, it could have been worse! I slept in until after 8 and since Jocko took the girls to six-mile resivoir today I got a great nap!
I didn't think I was ready to be alone, but I've done pretty good so far.. They have been gone for almost 6 hours now and I am getting a little antsy, but hopefully they'll be home soon! I slept for 2 hours which was so nice! I even woke up on my own.. Not to an alarm, or a crying baby, or fighting kids! It was so nice!
So now I just wait for Jocko and my girls to get home.. It's crazy how much I miss them even though they've only been gone for a short time!