As I posted earlier, we will be making a trip back up north in December for Valery's 1 year transplant liver clinic. Her COTA account is running very low, and there hasn't been any fundraisers for her in a while. We need to raise funds for her trip in December, and well for her medications that she still is currently on, 4 of them to be exact. If anyone has ideas for fundraisers, or would like to HOST one you can email me at c_hope_huttner@hotmail.com or contact Valery's COTA campaign coordinator, Sharon Niman, at sharon3231@yahoo.com for events to be planned in the Wisconsin/Illinois area. Also Valery's Grandma Tina at tcole_2000@yahoo.com.

ANY SUGGESTIONS/HELP WOULD BE HIGHLY APPRECIATED!

Well our trip to Wisconsin went very great! We had a safe 16 hour trip up there, and then back :) It was such a wonderful time visiting with the family. The kids got to do a lot of fun things while we were there including going to this park called TURTLE PARK. There are paddle boats there and we took ALL of the kids on them! They all had their little life jackets on, and we went around the little lagoon once, and they loved it! Valery was SO excited ;). The kids got to go swimming at an indoor pool, which was fun! Also went to a children's museum!
They all did absolutely great in Aunt Cyndi's wedding! The boys were handsome in their suits, and Valery was a beauty in her flower girl dress! So proud of them. It was a neat thing for everyone in the family to see Valery walking down that aisle, at 8 months post transplant, doing so well,it was just proof of God's work!!

Valery's Liver Clinic at her transplant center went very well. Me, Daddy, and Val all got blood drawn for a Biliary Atresia research study the hospital is doing, and she got her regular labs drawn at the same time. Then we went to clinic and she saw her transplant nurses Joan and Ilana! Those 2 are so great, and I'm always on the phone w/ them back and forth talking about her labs and medications. They do so much for us, we love them both! And Valery saw her liver doctor, Dr. Ekong. She was sooooo extremely surprised by Valery, and how she was walking all around. She's grown so much too, and it was just amazing to her! She measured Valery's liver, and spleen, and all is well!
So 6 months after the rejection episode Valery had, they will decrease her Prograf level, so around December. She will get to take less of that med. And then around that time they will start weaning her off of the Prednisone! So Dec-Feb sometime she will only be on 2 meds :) Anyways, her transplant team wants to see her back in December for liver clinic, and ultrasound at her 1 YEAR ANNIVERSARY!!!!!!!!!!!!!!!!!!!!!!
We will be checking Valery's brother, Noah, school schedule and will plan our trip in December around that soon.

Her labs ended up being "beautiful" as her nurse says, and we just appreciate all the prayers anyone and everyone is giving us. I will post some new pictures up soon.

It's been 8 months since Valery's transplant! Happy 8 months post transplant Val! :) 4 more months to go until 1 whole year! Just amazing!!!!!!!!
I will put up a few new pictures today of Miss Val.
We leave for Wisconsin tomorrow morning, if you could say a prayer....Thanks!

Hurray for good labs! All of Valery's liver numbers were great :) AST/ALT's in the 30-40's, GGT 16, and Bili was 0!! Her Prograf was a tad bit low, but her nurse isnt worried, and didn't want to increase the dose yet. She will have labs done at Children's Memorial Hospital while we are up there for liver clinic next week! We're so excited to see her liver team and can't wait for them to see how much Val has grown just since April, and see her walking now!
She is also officially done with her Easter Seals therapy :)
Val also now has 8 teeth!
God is Good.

Good News! Valery's Prograf level was right where the team wants it :) The nurse offered to move her up to every 2 week labs, but in 2 weeks we will be in WI on our trip. So we will get her labs done the end of next week, so they will have something to refer to at Liver Clinic the following week while were up there.

Also more good news is that Valery's therapy is ending! She has one more therapy session with her interventionist next Tuesday, and then thats it! She told us we have done a great job as parents helping Valery progress, and develop with the techniques and all she has taught us. :) It really helps when the parents work with their child, and help them along, and well we did that. And Valery is such a smart little girl! She's doing so much now and she will only go so far from here!! So yay to no more therapy!

Today we are so thankful for these things..So thankful we have good news to share. It is so comforting to know God is watching over Valery, and our family, and it is nice to be having a 'normal' day today :) Thank you God, Grandma Tina, and Children's Memorial Hospital... Thank You!

~LABS~
Valery's labs last week were pretty good :) Her magnesium was a little low, so we had to up the dose from .8ml to 1ml. And her Prograf level unfortunately was too low, so her dose went up. She takes now 2 capsules in the morning and at night. (1.5mg/2mg). She does really well with the capsules still. We are putting them in her Gerber puff snacks and it works well! :) Her liver enzymes were good then..

This week's labs so far we know her liver enzymes are good. We know that her magnesium is back up to where it should be. Her nurse told us the magnesium does go down a lot when kids first start taking Prograf.. But we're glad its back up! And now we are just waiting to find out what the Prograf level is...and we are praying that it will be where they want it so she doesn't have to increase the dose on it.

*****

As for Valery news, she is now a full blown WALKER! She is walking everywhere and rarely ever crawls now. She can keep up with her big brothers a lot better now, hehe :) She can also stand up all on her own! :) Her therapy will be coming to an end soon, next month, and well its perfect timing! She's done so well.
She is also starting to eat a lot of table foods and is starting to slowly wean from breastfeeding. She is having some issues with nighttime though, and we are trying to work through it. We assume it is teething, but have talked with other liver families about these children having nightmares while taking Prograf and Prednisone. So we are suppose to believe it is teething, but are told by the team that its probably a regular baby 15 month old issue... Hopefully she can start getting more rest at nite, and well mommy & daddy for that matter.

Well that's all for updates! We have our trip coming up in 2 weeks to Wisconsin for my sister in law's wedding. Val is going to make SUCH a cute flower girl :) Plus Val is going to have a liver clinic while we are there as well.

It is true, Valery now has a total of 7 teeth! Three more have popped through in this last week :) That explains why she has been up all night, hehe. It's so unbelievable she's teething so quickly, but since she stopped that one anti-rejection med they've all started popping through! Yay for teeth!

I was glad to hear the exact numbers for Valery's labs. One number that really stuck out was her GGT. Just a week ago it was 79, and now is 18! (they like to see it under 50). So this is GREAT! Coinciding with that her bilirubin, and ALT were so completely LOW and NORMAL! I was not so glad to hear her AST was elevated though. It was hovering around 80. But at the same time, glad now that I know why this number is elevated.

So the number is elevated because Val's been having some diarrhea, and has had the most AWFUL diaper rash. It is kind of blistery really. She's had it since yesterday late afternoon, and we have tried 3 different creams, and have tried other things. So I called her transplant nurse, and she called Nystatin cream to the local pharmacy. So finally she will get some relief. And about the diarrhea, her nurse said there definitely is a GI bug going around that she's had other parents call her about. And to give it about a week to run it's course. So thankfully there is an explanation for her number being elevated :) and that is probably why the AST does get elevated off and on because Valery does get random little 'bugs'.

Okay so the attentive, worried, cautious, and guarded mommy that I am, has read on the news that there is a measles out break. It is in 15 states, and is the worst one in 10 years. This could definitely be fatal for immunosuppressed children like Valery. And well it is HIGHLY contagious and you can just catch it by sneezing or coughing. So the most effective way to prevent it is with the MMR vaccine. Valery did not receive at her 15 month checkup because we talked with her pediatrician and it is in fact a LIVE vaccine. And well we thought for sure that a transplant recipient like Val cannot get a live vaccine. Well this is true for some, and lots of transplant centers do not let their patients get the live vaccines, but Children's has enough experience with this that her team is fine with her getting the MMR and Chickenpox vaccine! YAY! I was getting so worried with the measle outbreak and all. So we are taking her tomorrow to get it.

Thank you to everyone who keeps up with Valery and how she is doing. It makes it more worthwhile for me to keep the updates going.

Valery has now been on her new medication, Prograf, for 2 weeks, and her Prograf level is now where her team wants it! They want it between 10-12 and hers as of today is at 10.4! Yeah!
Her transplant nurse said her labs look "GREAT"!!
And she told us to keep up the good work! :)
We're so very thankful!

Valery will be seeing her transplant team in just 4 weeks! This is spur of the moment really. My hubby's sister is getting married at the beginning of August, and we will be taking a trip to Wisconsin for that. Valery and her two brothers will be in her wedding! And with the rejection episode Val just had and all, it makes us feel better that she would have a liver clinic sooner, than later. Our next trip we knew and had planned was for December (1 year transplant anniversary), but it is nice to have her looked over and all in August as well.

Well thats all for now. Your prayers are working..thank you.

P.S.~Valery is walking all over the place!!!!!!!!!!!!!!

Valery now has 4 teeth!!!!!!!!! 2 new teeth have broken through on the top. So now she has 2 on the top, and bottom in the middle :) Hurray for teeth!
I guess her switching from Neoral to Prograf (anti-rejection med) has REALLY helped her gum overgrowth problem! We are now going to take her off stage 3 baby foods for the most part, and have her mostly on table foods!!! She likes regular cow's milk a lot better now, and drinks from a sippy cup half the time. She is still breastfeeding, but maybe not for longer. It has been great she's breastfed this long, but we will see :)
Hip Hip Hurray for 4 teeth!