Headed in the right direction...

Em's labs today showed a drop in the Lipase from 6800 down to 1800, whooohoo! She was still pretty quiet today but not complaining about the stomach pain like she did on Sunday. I hope we caught this bout of pancreatitis early enough to knock it out quickly. She has to be watched though...if she thinks she has to take medicine she tells you her belly is all better, pretty sly. All other labs are still stable.

Theresa

What a great weekend...

What a great weekend! We went clothes shopping for Munchkin. It is amazing how more things jump into your arms to buy once you have decided you bought enough. Tee blames me for the "over budget" issue. I claim the "princess" syndrome and temporary insanity, although I am not admitting to anything. And yep, she got the shirt at the left.

During our shopping trip, Munchkin got to go for her first (and second) caroussel ride! She had so much fun! She giggled the entire time. It was so much fun to watch her enjoying herself that I actually cried. Its amazing how much she is enjoying life.

Unfortunately, today brought back another round of pancreatitis. It started this morning and has worsened throughout the day. This is our first since the last one in April. Her doctor is trying to avoid another hospital stay so he is changing her TPN routine. When we did this in April, it was successful and we avoided the hospital. So we are hoping for the same. Her lipase value was 6800 and a normal value is up to 160 units per liter. No wonder she has been miserable today. So now we wait. Hopefully we can control the pain and avoid the hospital. More tomorrow.

Dave

Not much new...

here. Emily is up to 30.8 pounds, as of yesterday, and her labs are still pretty much stable this week. She is still happy and playing like the 3 year old she is. The doctor is happy with her progress and is hoping that the transplant call comes soon, as we are, so that she doesn't become sick and have to be placed on the inactive list until she's well. We stay home a lot more now, than we ever have but that's not a bad thing. Emily decided tonight that Dave should go to work and that I should stay home with her EVERYDAY, as she put it. Wouldn't that be great! Will update again soon.

Theresa

Our 6-month anniversary...

Six months ago, today, Munchkin came home to be with us. Who would have ever thought that having a three year old, at this time in our lives, would be so much fun and would teach us so much. Munchkin is so happy being "at home" with us! On Friday night as we were having dinner together, she told both Tee and I that "she was glad we were home". She gives hugs and kisses freely to us, even during Dora and Sponge Bob! From a "dad's"point of view, its worth every pair of shoes that we have purchased. She is a princess in training. And you can tell by seeing her everyday and looking in her eyes, she truly is happy. That, in and of itself, is reward enough for Tee and I. Happy "6 months", Munchkin. We love you!

Dave

She's such a Turkey...

you know like the fat, happy Butterball kind. She was weighed today by Nurse Sherry and she is up to 30 lbs. We still haven't heard anything from Nebraska but we are packed and sitting on ready (of course we have been since March). Em's labs were stable (for her) again this week making 5 weeks in a row. I made Emily a chair and she absolutely loves it. I would love to make a matching couch but can't even imagine what that would cost to make. She sets the chair in the middle of the family room, across from the TV and glues herself to her stories (I mean Dora). For now she is doing great and we hope that much anticipated call comes quickly while her over all health and frame of mind is in such a good place.

Theresa

And today's news was...

Emily has officially been listed on the NATIONAL transplant listing rather than just at a regional level! This is awesome news just knowing that her chances of actually receiving a bowel have just increased by leaps and bounds. The downside to the news is being told that the risk involved for her is much greater than it would have been at the regional level (at regional level though, there was such a slim chance of her receiving the organ that was a "perfect match"). The transplant team has already mapped out their plan for her surgery and follow up care and are all over the past issues that caused her last transplant to be unsuccessful. With all the prayers that are being said, and have been said for this child by so many of you and many others that we don't even know, I know that God has her in his hands and will remain with her throughout life. I will update again soon, we are off to celebrate!

Theresa

It all began...

when I heard that a little girl I knew from the hospital where I work, was in

'states custody' and headed to a foster home. I didn't want to lose track of this precious little girl and never know what had become of her so I told our social worker at the hospital that I wanted her...then I told my husband.

It took almost a week for the state to finally take us seriously but by God's grace we started the process into Foster Parenting. Once we knew that we would be bringing Emily home with us we started visiting her daily in the hospital so she would get to know Dave and be completely comfortable with us. We will never forget the day she was able to leave the hospital with us, January 18th, 2010. She was so excited that she ran into the sleeves on her new little jacket...only she had it on backwards!

She was 22lbs the day we brought her home and wearing 18 month old size clothes at the age of 2 1/2. She was small and almost fragile. She has medical problems, the worst of which is the need for a bowel transplant (for her... a life saving operation). From the day we brought her home we started working on the process to have her placed on the waiting list for this transplant which needs to take place in Omaha, Nebraska and also working on building her strength and size.

We are thrilled to say that she was actively relisted on the transplant list on March 4th, 2010. At this point she is currently listed on a regional list in Nebraska, although we found out last week that there is consideration being made to bump her to the national transplant list which would increase her chances of finding a bowel sooner, rather than later or not at all. We are very anxious to hear back from the transplant team as to what decision has been made.

At this point in time Munchkin is a happy, "healthy" (per say) 29lb, 3 year old. She has not been hospitalized since March 2010 and other than Nebraska, we hope to keep on that track for some time. She has all but bypassed the 24 month/2T clothing size and is in mostly 3T clothes and is growing like a bad weed. She can count to 10, loves Dora (what little kid her age doesn't), is quickly becoming addicted to shoes (by brand), and we are working on her shapes and colors. She knows that she will be going back to Nebraska at some point and one of our goals post transplant is for her to be able to eat food by mouth. (at this point she is dependent on a medically prescribed and formulated nutritional supplement and sips of water) She gets excited to talk about that. Emily is a very smart little girl and has taken all life has dealt her and manages to come out smiling everyday. She doesn't have a normal, normal childhood but we have attempted to make it as normal as possible for her and make sure we try to take advantage of all rare opportunities for her (no matter how big or small) so she can enjoy life outside of a hospital room as much as possible.

I will update this blog probably only once or twice a week until the transplant happens and then will change to daily, post transplant to keep everyone updated on the milestones she makes in Nebraska.

Theresa