Hmmmmmmm............
HI!!!!!!
Look, a little teenager already.


This place is little crazier this week compared to how it has been since we first got here. Apparently a lot of the children's appointments are scheduled during their summer break, and since school is out, this place is swarming with children. I find it kind of overwhelming. We're just used to everything being pretty quiet around here, especially on the weekends. However, as one of the nurses informed us last night, that will no longer be. I just can't wait until it's time to go home. We are so homesick and we just want Katlyn better. Even if we can't go home home for a bit, that's okay. I think we'd feel better being closer to home anyway.
Katlyn is doing very well. She has had a huge amount of energy in the past few days, which has to be a good sign. Her easting getting back on track also. It's hard to say if she was a little off because of the chemo maybe, or because of her age or maybe she's using it as a form of control. Who knows. All we know is that Katlyn still eats well no matter what and it seems that she's been eating better and better everyday. She was weighed today and still weighs the same as when she first got here, 28 lbs. That is exactly what we wanted anyhow. She needed to catch up to weight with height and that's exactly what she's doing now, plus she's running around like crazy.
So Katlyn's doctor told us today they were going to investigate this elevated heart enzyme further. They are not going to do anything to compromise anything for Katlyn in anyway, meaning doing anything invasive. They just want to be sure it's not anything that's being overlooked. So she will have a consult with a geneticists tomorrow, where he will ask a load of questions, examine Katlyn and order specific blood work. They just want to make sure there isn't anything wrong. There is just so much that they don't know about Katlyn's illness, and where at a research hospital, they want to investigate everything they possibly can about Katlyn. We appreciate it too. Her doctor said this enzyme had been elevated when we first got here and then it went down, and again back up after the gene therapy. He also said that in a normal healthy person they wouldn't be concerned at all, but because Katlyn has ADA SCID, they just want to be sure everything is okay. So it's just a safety measure.
Oh yeah, I also wanted to let everyone know that since we have been here I have found four 4-leave-clovers. That's right, four. That's got to be lucky. They are all in Katlyn's window in her hospital room. It almost seems that when we need it the most I just happen to look down, and poof, there's a four-leave-clover. I know, I know, but you must admit it is pretty lucky. I have found eight four-leave-clovers to date. Seven of those since we've had Katlyn. She is going to be okay. I just know it.
I have Faith.

I know I saw that in my book somewhere....
The birds are so beautiful outside, and look at the trees.........
Hi Dad!!!!!
Hehehehe!!!!!! I'm back here!!!!! Surprise.


Today is a great day. Katlyn is doing very well. She has so much energy today and it's so great to see her like that. It's not as though she has lack of energy any other time, it's just that today she has so much extra. That's just wonderful. She is so happy. Daddy has been introducing her to a wide range of music over the last couple of days, and by watching her singing and bobbing her head to Thunderstruck by ACDC, I'd say Katlyn is really enjoying herself. She's such a doll. Yesterday I found her one of those basketball nets that you can put over a door frame etc. Well, we set it up today and Katlyn had no questions about how to use it. She took right off and is playing with it very nicely. She just seems to figure all of these things out on her own. She's really quite amazing. She healthy.
So her blood work is going to be more spread out and will be done every Tuesday and Friday, except for today because she was checked yesterday. So, we'll talk neautrophils on Friday and I feel optimistic that her numbers will be up. I think Katlyn is on the rise now. It was driving us crazy checking them ever day because she would bounce up and down of course. Now that we're checking them less frequently, I think we'll get a better curve.

Do you want something?
me and my daddy
Yeah right!!!!
Daddy and Katlyn dancing
So cute.
Yeah, that was fun!!!

Katlyn's neautrophils were up a bit yesterday to 393 and today they were 333. So things are looking a little up. We are optimistic that things are going great. So today is day 30 post transplant for Katlyn and for now on they will stop taking Katlyn's blood everyday. Instead her blood draws will be twice a week. I think will make things a lot easier for everyone. Instead of watching the numbers so closely everyday and seeing her bounce up and down so much, this should give us a better idea of where she really is.
Katlyn is doing very well. Her platelets and haemoglobin's remain at normal level and her white blood cell count seems to be rising, and as a result her neautrophils are rising also. Her liver enzymes are monitored in two ways and in one way they see the levels have come down after being slightly elevated and in the other they remain slightly elevated. Also, one of Katlyn's heart enzymes is slightly elevated as I believe I mentioned when we first came her, but her doctor feels as though it's nothing to worry about. He is going to consult a heart specialist once again and get his input. There ways of seeing why this enzyme is elevated but the means are invasive, so they would like to stay away from doing anything that may upset the balance of a healthy child. The doctor said if he saw this enzyme elevated in say John, then they wouldn't think twice about it. They would conclude that it wasn't worth investigating because Johnathan is a perfectly healthy person and the particular enzyme elevated just slightly isn't enough to indicate there's a problem worth investigating.
Mind you Katlyn is a special case because of her condition. They just want to be overly cautious, at the same time they don't want to jeopardize her in any way. All the tests that they have done so far indicate that Katlyn's heart is perfectly normal and there's nothing to be concerned about. All in all, they just have to make us aware of everything they know about Katlyn. However, they feel that things are great and we shouldn't investigate this anymore at this time and they're just going to get another opinion to be sure.

Sorry I haven't written anything in awhile. There just hasn't been any new news. Katlyn still maintains a neautrophil level around 240. Each day we hope to see her counts go up, but so far nothing has happened. We are being very patient. It is hard because we are just so close and just want our baby girl better. She is doing great though. No issues at all other than her neautrophils being a little slow, which, if you follow Katlyn's story, you know has been an ongoing issue.
The doctors feels that things are good though because her other numbers look great. They also see her neautrophils fluctuate a little bit, which indicates some activity. They feel as though if things were not working then her numbers would just drop completely and wouldn't come up at all. Right now they don't really know for sure what is going on or how long things are going to take, because they are just learning that some ada scid children have problems with there neautrophils (why some and not all, they don't know). This is how things are when you're participating in a research study. Not all things are known, and they learn a lot from Katlyn.
For now they are keeping a very close eye on Katlyn's numbers to make sure she doesn't get too low. Her blood is checked everyday and everyday John and I anxiously await those numbers. Any day now we should start seeing her go back up. We have no idea how long it is going to take but Katlyn is healthy otherwise and happy and as long as we can keep her that way, things are great. It will be so nice when we don't have to worry as much though, and for sure that day is getting nearer with each passing day.

Since the last time I have wrote Katlyn has been doing nothing but dropping with her neautrophils she went all the way down yesterday to 202. Today was a wonderful day. Katlyn made a big leap up to 360. We really hope this is where she start to keep the uphill direction. Her doctor seems to believe that it is a lot bigger jump than in the past and that the chemistry in her body is actually changing. I really think he's right. Today if Katlyn's number dropped again and she was 200 or less, they were going to give her some GCSF, which is a bone marrow stimulator that would cause Katlyn's neautrophils to shoot up. They don't want to use it if they don't have to because they are not sure if that may slow the process of cell growth long term, or have any other effect. Of course they were going to use it if Katlyn's numbers dropped too low because they didn't want her to be in danger, which of course we're thankful for. But her numbers went up and the G was called off. YEAH!!!!!!
I woke up this morning after Katlyn and I had a really great night's rest and I just had this overwhelming feeling that her numbers were going to be better.
We hadn't really noticed that Katlyn was acting a little off until we saw her go today. She felt so great and had so much energy. It was so wonderful. We just love to see signs like that, because that the first sign that something is going great. That girl didn't stop all day. She was ripping and roaring, singing and dancing all day long until bed time when she drank 4 ounces of milk add passed out. Usually she drink at least 8 ounces, but I'm telling you she had worn herself out.
I hope that she gets another great nights rest tonight and feels fantastic again tomorrow.
Katlyn is doing great. I really believe that we are heading upwards now.