Wednesday, December 2, 2009

Great News

I had to take Annaliese into the dr. today as she started running a fever last night, and while there they let me know that they have finally found her genetic testing results. It has only been 6 months, but they showed that she does NOT have a genetic mutation. She most likely has autoimmune which will self resolve. So we sit and wait for it to happen. She has already showed so much improvement. We started giving her shots three times a week and now we are at every seven days. This is her first fever since June when she was admitted in the hospital. She is doing great except for the darn diaper rash that she seems to like so much. This darn rash is a pain in her butt (no pun intended). It is not a flaming red I need meds kinda rash just a red bottom all the time. I guess I need to potty train her and that will help but hey she is not even two yet.

Tuesday, October 20, 2009

Taylor's allergy testing

Today I took Taylor in for allergy testing as his zyrtec is not working well anymore. Well we were quite surprised with the results. I know Tara has seen how they allergy test but if you havent been there for it, it was something else. They had him lay on his back and marked a grid of dots with a purple pen then next to each dot they "pricked" his with a needle with an allergen inside. Total in all was somewhere between 36-40 pricks. You then wait 15 minutes and see if he develops a wheal or a spot that looks like a mosquito bite on top of a red welt or hive. Well he had reactions to 3/4 of the all the shots. I tried to get a picture for you all but didnt have much luck with my camera. Anyways the verdict is that he is allergic to almost all of the trees, grasses, and weeds. He is NOT allergic to inside allergens (cat, dog, cockroach, dust mites), molds or foods. We are testing him with blood to check his pineapple reaction as he has had bad reactions to eating it. That poor child had hives all over his back and he was NOT allowed to scratch them. He will begin getting allergy shots now as his allergies all ranked 3 or 4. (4 is the worst reaction). He is also taking zyrtec, two different nasal sprays, and patanol (for his eyes), in addition to the allergy shots he will get upto twice a week. He also was given an epipen for his pineapple allergy as his reactions have been bad in the past. He has one the epipens for school as well because he likes to eat school lunches and they serve pineapple. Bryan thinks we should take Taylor and Annaliese and put them in a big bubble and leave them there.

Thursday, October 15, 2009

Some great news

We had Annaliese's hemo appt today and we were surprised with an ANC of 2200. She had her shot schedule revised about two weeks ago and now we are giving then every 5 days instead of Mon and Thur. Today we fully expected her to be at 0 as she has not had a shot for 5 days (she is due tonight) but she has a great ANC. When I questioned the dr whether or not this was meds and her adjusting I was told NO THIS IS HER OWN BODY, meaning it is working without the meds. YEAH!!!! If this trend continues then it is very likely that she has autoimmune neutropenia and she may be on the road to recovery. We couldn't be happier right now. We go back in three weeks and if she is still maintaining her ANC on her low points then we will space her injections out even more until she doesn't need them anymore. We are so excited about this prospect. On the other hand she is now being tested for a blood disorder called Von Willebrande (VWB). She has had bruising up and down her spine and across her lower back off and on for quite a while now. She gets bruises on her body that we can not explain and so they are checking into it as the dr was concerned this last time we saw him. Now let me add that I am sure you are thinking cancer as this is a BIG sign of leukemia BUT her platelet counts are great (even very high at points) so this is NOT a concern. If you search VWB then it will explain what it is but is something her ped. mentioned even when she was a newborn. They did the work up today on her and we should now the results in about a month. Just a little funny about our appt today... Annaliese has viens that are very small and love to roll. I have the same problem and am a VERY HARD stick because of it. They normally have to stick her twice (on a good day, more most often) to get the one tube we need for her CBC. However today they needed four tubes to get the workup done. Our hemo has their own blood drawing staff and we always have the same lady (I can never remember her name though) and when they told her that they need four tubes today she started to cry. She came in and kept telling me she didnt think she could get it. She just kept repeating "You want four tubes from Annaliese Malcolm and I am lucky to even get one each time." over and over. It was quite funny but after two pokes and TONS of proding with the needle they were able to get blood from her hand.

Tuesday, October 6, 2009

Taylor's Baptism

I just wanted to invite you all to Taylor's baptism this Saturday, 10 Oct. at 2pm (it could change to 4pm) at our church building. If you want to come just let us know so we have enough snacks and also if you need a place to stay so we have enough beds ready.

Sunday, September 20, 2009

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.

Wednesday, August 12, 2009

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.

Saturday, August 8, 2009

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.