It's been to long...

since the last post. On November 1st, Emily was hospitalized for 5 days due to ...you guessed it, a bout with pancreatitis. She has done fine since with a few changes to her schedule of TPN versus IV fluids. As of Tuesday the 14th of December she is up to 32.7 pounds, she now is right at the 50% for her weight on the growth chart. She is wearing 3t-4t clothes and her feet are now a 6 on the shoe size. Growing like a weed and we couldn't be happier.

She has a busy Christmas schedule with all her parties. Last Saturday she went to her CASA and NW Louisiana Foster Care Christmas party, this Saturday will be the States party sponsored by Barksdale Air Force Base. She also attended a Christmas party at Judy and JR's on Monday night. Judy and JR are the saints in Emily's life who purchased the Bentley of a stroller pictured above, for a dual purpose one of which I will disclose in a minute the other as a means of transportation around the hospital post transplant.

Our biggest news at this time is that we have applied for a wish for Emily through Make A Wish Foundation. We have requested a trip to Disney World for her so she can meet all the princesses and Tinker Bell. We have been told that the wish has been approved but we have had to wait for the red tape paperwork from the state (which was finally faxed to Make A Wish on Monday this week). We are waiting for the phone call to finalize plans and get the date.

Em is getting antsy to start her TPN for tonight so I will end this post here. Hopefully I won't procrastinate as long for the next post. Take care all and Merry Christmas!

It's been a while...

since the last update. Emily has been doing well for the most part, we had an overnight stay in PICU for fever and just to run the battery of tests needed to make sure there was no central line infection. We of course are breathing easier knowing it was just a UTI. She has been doing well since taking her meds, although she hates them.

Uncle Rick sent Em a little Harley Davidson shirt from bike week. As she puts it "Uncle Rick, Uncle Rick, I la him so much". She hasn't worn it yet but I can't wait to see her in it with her jeans and cow boots on!

Em has a new nurse, Jennifer. We went for several weeks without a nurse. So far, so good. She seems to like Jennifer, the nurse is very soft spoken and quiet. We like her. She spends her day actually doing things with Em so that keeps Dora and Diego off the TV for a while each day anyway.

We are on an official schedule now for TPN and fluids to keep the "pancreatic boogie man" away and keep the princess out of pain. So for it is working well.

Gotta scoot off here for now but will try to update again soon.

Theresa

How do Happy Feet say Thank You...

to an amazing group of women who opened their hearts, time and dance studio up to this little girl and provided her with the dance of a lifetime. The awesome ladies of Vicki's School Of Dance gave Emily the opportunity, this evening, to have a private lesson in their dance studio. Sara, Melanie, Ashley, and Vicky went so far past anything we would have imagined, to make this experience awesome for Emily. Emily had the opportunity to feel like all little girls should, like a very special princess! From the leotard and tutu, to the dancing, music and freedom to move around in the big dance studio and yes even right down to the dirty dance feet, this little girl lacked for nothing. She had a ball and came home and looked at all her pictures and demonstrated how to shake her stuff. They decorated in her beloved butterfly theme and made everything Emily specific. These ladies are a true blessing to this community and were definitely an extreme blessing to us tonight. They created memories for Emily that will share a part in her recovery process thru photos while in Nebraska. Ladies...thank you is not enough to say for all you gave to Emily this evening (including a good nights sleep, as she crashed within 5 minutes of hitting her room). Continue to be the awesome people you are and continue to light up the lives of all your students!

Dave and Theresa

Who knew...

that you can collect so much stuff? We finally finished our move into the new house and the garage may never empty out. It is packed solid. Emily's room is the only one that is finished. Through the move she has transitioned into a toddler bed and is doing great with that change. She is loving the new house. She got to meet her Uncle Rick, Aunt Cyndi and cousin Marlena this weekend. They all came out to Louisiana to help us get into the new house. She loved spending time with them, especially her good friend Uncle Rick, with the computer, and who likes to read Dora the Explorer books.

Emily has been doing well physically. Labs are still pretty stable and no illness'. We had been joking around before the move, that Nebraska would probably call in the middle of it. No lie, THEY DID! They were just checking on Emily to see how she's been. They are thrilled to see her labs looking so good. Although that is a good thing, it also gives them reason to put someone else ahead of her on the offer of a transplant, if it were to come down to nit picking a choice of the recipient. They did say though, that she still has all the other criteria that got her on the list to begin with...so we wait.

Theresa

Not much going on here...

Emily has recovered from her recent bout of pancreatitis and is back to her normal happy self. Her labs are back to being stable ( the only thing that really was off the norm for her was the Lipase which is caused by the pancreatitis flaring up). We've been home a lot more because of the heat...it can take a lot out of her so it's serves her better to stay in. The biggest news is that we will be moving soon. Our lease is up at this house and since it doesn't seem important to the owners or realty company to make needed repairs, we will move on. We are actually moving into a house that we almost bought 5 years ago when we moved to Louisiana, but it sold to a higher bidder so we bought in the neighborhood right behind it. It will be good to be back in that area of town where it is quieter. Emily hasn't seen the house yet but we plan on easing her into the move with as little stress as possible. We have determined that as long as we are with her, she takes changes in stride, for the most part. That's about all for now, will try to post again before the move or when the call comes in from Nebraska, whichever comes first.

Theresa

Is this a bit over the top...

the correct answer is yes, lol. I figured this out the other day when I was changing the chosen, extra diaper bag outfit, because it wouldn't go with the shoes Miss Priss was wearing. It was either that or add another pair of shoes to the diaper bag "which is the current status". Dave is always finding new shoes that Em just has to have. She now matches her shoes and clothes and is getting finicky about which pair she wears. The only ones she would wear with any outfit are her "cow boots". S-P-O-I-L-E-D!!! Oh and that doesn't include all her new clothes, we won't go there.

Anyway Emily is doing well and back to her normal self after her recent bout of pancreatitis. She has been a little more tired this week but not sure if it is recovery or the heat. Her labs are looking more like her normal labs, normal for her but not all normal. Still nothing from Nebraska other than a call last Friday to check on her after the pancreatitis. I think the call almost sent Dave into a panic attack. Will update again soon.

Theresa

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