I guess life has slowed down for us because..

it has been awhile since I posted anything. I guess that is a good thing. We are doing good here. It is finally starting to cool down some. I think we were in the mid 90's this past week. The older two boys started soccer this past week and just love it. Our stake puts this program on and we just love it. They started this program this past spring with baseball. It is a great setting for the kids and the two best things about it are that it is FREE and they provide the t-shirts, and the practices and games are Thrusday nights. So we are not running all over town to different practices on different days and whatnot. I love our stake. Owyn is upset that he is not old enough yet but that doesn't get him down as he get out there and plays with the best of them. That boy will be amazing when he is old enough to play. I will have to look for the pictures we have of him playing soccer last year with casts on both legs. That shows his dedication.LOL Annaliese is doing good despite the time of year. With the boys back in school we are starting see things change a bit for the worst. The boys have been in school for a month now and she has had a UTI, two colds and woke up all snotty today. So we shall see how this winter will be with her. She is tolerating her injections great. She will fuss when she see's me draw up her med but calms right down once the shot is over. She then gets up and puts it all away. Her curls are getting tighter and more of them all over her head, before the top was pretty straight but she is starting to get them up there now. I get stopped EVERY single time I am out by someone asking me if I curl her hair like that everyday. HAHA like I would put my daughter thru that. Lets see what else has gone on here....Bryan started his last chemistry class and so far is enjoying it and even likes his instructor. He will be putting in his package to the PA program here in a couple months. We don't see much of him here at home anymore but that was all expected. Taylor had his annual eye exam yesterday and boy is that kid blind. He has been in glasses for over three years now and not once have his eyes shown any improvement. I think dont even think he will be a good candidate for the laser surgery. I hope that will change but I guess only time will tell. Speaking of eye's Owyn and I are going to be heading up to SLC here on 30 Sept for him to have his eye surgery repeated. I will post some more "pretty" pictures of that when we return. Maybe I will get a funny video of him on versaid. And I guess the last thing coming up for us is that Taylor is turning eight on 1 Oct. So that means we are in baptism mode here. With Owyn's surgery actually scheduled for Taylor's birthday we have Taylor's baptism scheduled for 10 Sept. So if anyone wants to come just let us know and we will provide beds and food for you. I will post some pictures of that after it has happened as well.

A chapter finally closes...

This is the story of a boy who decided that he wanted to be alittle different then most. He chose to come to earth with a few hardships. He has been amazing through all of his trials. However a few days ago one of them finally came to a close. See he was born with bilateral clubfeet and has had to endure many weeks of casting, heel cord surgery, and shoes connected to a bar.

He never smelled like baby powder, he always smelled like vinegar. This was how we had to soak his casts off each week. Nothing like dipping your little baby in a trash can full of warm vinegar water.

At about ten weeks old he had to have his heel cord lengthened. It was an outpatient surgery however he was kept overnight for observation. Then it was back into casts again for a couple of weeks.

After his surgery and another few weeks of casts, Owyn was able to get into the Denis Browne
Bar. It was some lovely white open toed shoes connected to a metal bar that kept his feet pointed and angled out. He has had this bar for just over 3 years. He had to wear it all the time for about six months and the he was able to only wear it at nap and bedtimes. Believe it or not he learned to crawl with that bar

on. This past week we saw his orthopaedic surgeron and we got the wonderful news that his feet are completely corrected. He has only a slight 5% chance of a relapse. As of now he has no pain in his feet and only diminished feeling. Hopefully he will not suffer much pain throughout his life because of the treatment plan that we followed. It was probably was the best news we have gotten in quite awhile.

What a long week...

we have had. We were able to go up to Utah for a quick visit along with an eye appt. for Owyn. This was his four month check up from his surgery and well we knew going in that we were probably facing another surgery. His left eye has not improved and now instead of two droppy eyes he now has two uneven eyes as his right eye has taken well to the surgery. So he is set to have surgery again on Oct. 1 (Happy Birthay to Taylor). I bet he wont be very happy to have to share his day.LOL While we were up in Utah Trystan and I decided that it was the best time to get sick and both of us ended up with strep throat. Fun Fun, as Annaliese is still having her ups and downs with her meds we both ended up wearing masks while in her presence. Lucky for us she still has not gotten the strep, in a few days we should be in the clear. As for her her numbers are still all over the place. In the last four weeks (with her neupogen shots on Mon and Thrus) her numbers have been 98, 89, 1079, and now 849. So as you can tell she is still not stable by any means but there really is nothing they can do because if they adjust her meds then we end up way to high. We are still waiting on her genetic testing (good thing we are not in any hurry to have those results) and for the time being she is not having to go in weekly but monthly right now. She is as stable as she is going to get at least for the time being. On Tuesday we took Owyn into the dentist to have some cavities filled (this is what happens when you have a kid who has taste and texture issues) and found out that he is already starting to get more so we were informed that he needs to have cleanings every three months instead of just twice a year. They are putting in on flouride tablets to see if they can help keep his sugar bugs at a minimum. We have not had much luck with that kid lately and I actually am dreading taking him in for a feet check up, with the way things are going it will be our luck that he will leave with casts again.LOL And on that same day he has a yearly eye exam, so we will just assume that we will leave with a prescription for glasses as well. As you can tell we are not very optimistic right now.

On a good note though they boys are getting excited about school starting up in a few weeks. I think they are just excited to not have to go the anymore dr. appts. They have been great sports all summer with the pain of all of Annaliese's appts but I still feel very sorry for them. I think school with help them recover this horrible summer. Bryan starts school on 1 Sept and this is his final class before he is able to apply for the PA program with the military. We are very hopeful that next year sometime we will be heading to TX for him to go to school. We will let you all know how that goes when he hears back from the military board.

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.