We are approaching Havalah's one year transplant anniversary and she is doing great! For a few months now we have had nothing but good lab results. She has grown too! She is up to 36.5 inches tall and 28.5 pounds. And she is fianlly starting to grow some hair. It's still a little sparce, but it appears to be coming. She's been off steroids complelty for about 4 months now, and I think that's why she's really jumped in height and the hair is starting to come. She is down to just 3 medications. She takes prograf and cellcept twice a day to suppress her immune system and baby aspirin to keep that blood flowing well.

We were at CHW today having a lot of end of year testing done. They did some extra bloodwork including testing for CMV and EBV both of which I would expect to come back negative since she is not showing symptoms of either. She also had an ultrasound done, and a bone scan and bone density test to check bone health, which could be less than ideal from all of the steroids she's had the past year. Her normal labs looked great. She also had an A1C test done which checks for diabetes, and those numbers looked good as well, which is a relief. She is at extra risk for it due again to the steroids and possibally the prograf as well. We bought a gazillion bags of mini candy bars and put together packages in gallon size bags along with updates and delivered them all over the hospital today too. It's fun for Havalah to hand stuff out, and we like to remind people of how much we do appreciate them.

Havalah's actual anniversary is this Thursday August 3rd. We're going to go to Chuck E Cheese with some friends, and get her a cake and a few gifts. Kind of like a mini birthday party I guess. I don't know if she'll understand the concept of transplant anniversary, or how much she even remmebers. She certainly remembers being at the hospital, but I don't know if she remebers surgery or being in the PICU etc. I am guessing she remebers at least a portion of it.

In Normal kid news everything seems to be going well. She was discharged from the birth to three program about a month before she turned three, and she doesn't qualify for any further developmental help. I don't know if she is 100% caught up on verbal skills, but if not she is darn close. She's always chit chatting a way, and loves to sing. Her singing is very cute, but it definetly shows a lot more enthusiasm than talent if you know what I mean.

Her appetite seems to be improving as well and she continues to slowly gain weight. She still has to drink two cans of pedisure a day, but she's starting to eat a wider variety of foods. Lately her favorite things are scrambled eggs, pretzels and m&m's, not as a mixture.

Her favorite things to do lately are playing games on the computer, which she asks to do constantly. She also loves to be outside playing in the sandbox, going to the park or swimming. This past week or so we've mostly been staying inside though, since it's been so hot. She also loves to go to playgroup. She asks every day to play with friends, so we try and get together with our friends Becca and Mike and their daughter Esther quite often as well.

So I guess that's about it. Right now we're just enjoying a bit of normalcy and hoping it lasts for awhile. We've had a busy summer, going back and forth to Green bay several times, landscaping our front yard, and dealing with the joys of home ownership (mostly in the form of stinky germy raccoons) We're planning on doing a lot of website updating and will be adding some new photos this week. We'd like to add some photos and links to our friends with liver disease, so if you'd like to be included, Please email me with permission. Kristennn@gmail.com

Thanks for checking in on us, and don't forget to sign the guest book!

It's Havalah's one year anniversary today, and we did a lot of celebrating. We went to her play group this morning and brought cupcakes, so they made her a crown like they do for birthdays, and she thought that was pretty neat. Then at night we went to Chuck E Cheese with some friends and had cake, and when we got home she opened presents.I'm sure she didn't really "get" what we were celebrating but she was happy to do so anyhow. Maybe by next year she'll have a better understanding, I can only hope she is doing as well next year as she is right now.

I've been so busy this week I really haven't had time to stop and reflect on what we've been through the last year, and what reaching this one year mark means for us. Last year there were many days when I wasn't sure we would make it to this point, and tommorrow marks the biggest one, when she had her hepatic clot, but really all fall when we couldn't figure out what was wrong and her numbers were up and down, it seemed like things would never get straightened out, and her life would be one complication after another.It's amazing how well she is doing now, and how normal she seems. One of the things that keeps coming to me is ... that I'm a little embarrassed at how quickly I've gotten used to her being healthy, and almost started to take it for granted.

This first anniversary is really kind of a big deal because, while complications and rejection can happen many years out and at any time, percentage-wise most of them happen in the first year, the second year is the second highest, but hitting that one year mark and having her doing well, seems like such a gift. Right now Havalah is the healthiest she has been since birth.

The one year anniversary also marks a time when I can write to the donor family. I haven't done so but for the last few years, even before transplant I've thought about what I want to say to them. It's hard because you want to put it all out there and let them know exactly what it means to you, and how much you appreciate the decision they made, but at the same time it's an emotional issue for both sides, and you want to be careful not to say soemthing that could offend or be misinterpreted. Many times I have imagined losing Havalah and how devestated I would be. That family is living that reality. Please keep them in your prayers.

Thinking about how well Havalah is doing right now, also makes me stop and think about some of our liver-friends who aren't doing as well, and for whom the unknown looms much closer than it does for us. I want so badly for all of our friends to be doing just as well as Havalah. I want them to be able to take things for granted a little bit as well. Us parents of sick kids, we learn to be strong and deal with a lot, but after a while it just gets to be overwhelming, and we just need a break. I wish i could do something to give it to them.

I know we've been lax at adding photos to this website. The first half of Havalah's life is so well documented here with photos. I'm going to go backwards and try to fill in the gaps a bit. I just added a ton of recent photos from June and July. I think there's about 100. So please, check them out!