So much for the good news

It seems as if we are not entitled to good news unless the bad comes along. We had our weekly appt on Friday and this time the dr. was speechless. Never a good thing. Annaliese has been suffering diaper rashes for about 2 weeks. She has never had a problem before and we have not changed anything in the diapering dept. The dr. said that it could be from the heat (it has been 112 here lately) and that is couldnt be from her neutropenia (more side effects) because her levels are so high. They gave her some nystan (sp) to help her. After we did her blood draw, and much to our dismay, her neutrophil level is at zero again. The dr. didnt have a clue why as they expected her to still have at least 7000 neutrophils. She now has defied everything they have perdicted of her. She is NOT a textbook case and now they are not sure what to do with her. So we have resumed her neupogen and put into place our "bubble baby" rules again. We are hopeful that things will start to get better for her as we need to have things figured out before the boys start back to school. We all know what happens when the kiddos go back to school. I cringe to think about it. Also, her genetic testing has gone missing. Yes missing. The dr never recieved her results and so they have requested them from the hospital STAT and well as far as I know they have not recieved them. I went in last week to get copies of her records that would have included these results only to be told Friday that they havent even started to copy her chart yet. To say the least we are very fed up with everything right now and would just love to get some good news.

18 month Stats

Annaliese had her 18 month check up today and she is doing great, besides the neutropenia. She was 7 lbs 6 oz at birth and now weighed in at a whooping 22 lbs 6 oz (25%), 31 inches long (just above 25%), and her head is 47 cm (i dont know what % that was but he said normal). She is doing good with her growth and the doctor is pleased despite everything she has gone thru. Unless we get sick she doesnt have to go back until she turns two. YEAH!! Finally an ALL GOOD NEWS DOCTOR APPT.

An interesting turn of events...

Annaliese had an appt today with Dr. B (although he was out of town and we ended up seeing his partner, Dr. Lisa) and well things have taken quite a turn. We started the neupogen shots two weeks ago. Last week after receiving only two shots her ANC was 5900. That was up quite a bit seeing that for a few week before that it was zero. Well today we had another blood test (after recieving six neupogen shots) and her ANC (according to the machine, we are sending it out to double check) is 29,800. Average high for her age is 6500. So the shots are working well, a little bit TOO WELL!! With numbers that high we are facing more problems so we are not going to be giving her anymore shots until her numbers get within normal ranges again. Once that happens we will probably only have to give her one shot a week. Her WBC (white blood cell) count was at 39,500 and normal high for her is 10,500. Because of these numbers she is probably experiencing extreme bone pain. Right now her bones are FULL of cells. Another thing that came up today was the mention that she may have yet a different form of neutropenia, called autoimmune neutropenia. This one would have low ANC counts because her body had developed antibodies that are fighting off her neutrophils. The good news is that this usually self resolves by the age of five. There is a blood test that they are going to run to see if she has these antibodies. We are hopeful that they are able to get it run this week with the blood that they collected but if not then they will run it next week at our next blood draw. Also, her genetic testing is back however the Dr. is out of town until Monday, so we have to wait. The results were sent to him and are probably on his desk waiting to be reviewed. Dr. Lisa was not able to get them until he gets back. So next Friday we should have those results to share. To sum up exactly what you all are thinking... Dr. Lisa said that right now Annaliese could go into Pediatric Ward at the hospital and touch everyone's face and put her hands in her mouth and not CATCH A THING!! Gross, I know, but very reassuring that at least her immune system is working. So this weekend she will be able to attend nursery for the very first time. We are so excited for her.

A hiking we will go...

This past weekend, Bryan decided to take the boys out to go hiking. They found a place in the Spring Mountains called the "The Robber's Roost," it had some caves and what not for the kids to explore. They had a blast. Annaliese and I had to sit it out as she is not allowed to go into the mountains right now, per her dr. I guess nature is not clean enough for her. LOL

They also went looking for a geocache while out there and had no luck finding it but they sure tried hard to find it.

Fun in the Sun

Because we are not able to go anywhere "fun" right now with Annaliese, we decided to bring the fun to us this summer. We went out and bought this very fun pool for the kids to enjoy at home. They have had a blast with it. Here are a few of them playing.Taylor...

Trystan...

Owyn...
And finally Bryan and Annaliese...

The best thing is it holds up to 400 lbs, so we can all enjoy it.