Sorry...

I am still trying to figure this thing out and as I just looked at my last post with pictures it looks pretty bad. At least you get to see the pictures. One day I will get "professional" with this thing. Until then take this as my apology for how this things comes out looking.

Bryan's Promotion Ceremony

This past Friday Bryan had his promotion ceremony for work. He has waited a year to put on this next stripe and boy was it a neat ceremony. This was the first one the boys and I have been to as he put on Senior Airman in Korea and Staff Sergeant in Iraq. In order to put on your new rank they have to get it "pinned" on. And the three boys were asked to do this very high honor. In order to do this the boys got to punch their dad in the upper arm. I think that the reason he asked the boys was because they don't punch that hard. In the past he has some pretty bad bruises. He will officially become a Technical Sergeant on 1 July. We are very excited and are looking forward to raise that we will get. Here are a few pictures from the ceremony. The boys had the camera so some are not very good. Enjoy!!

Taylor's Dental Visits

Taylor has had to see the dentist twice this month, once for a cleaning and they ended up having to pull a tooth (the adult tooth was coming in behind the stubborn baby tooth) and the second time to have his mouth fit for a space maintainer. A few months ago he cracked a canine in half and those babys dont come in for a few more years. While we were at the second visit the dentist realized that in order to put the maintainer in he would have to pull yet another tooth. And upon further examination decided that two more had to come out, not due to the space maintainer but because they were growing in funny and he didn't want the adult teeth to follow suit. So in two weeks poor Taylor has had to have FOUR teeth pulled and that is not counting the canine that came out a few months ago.LOL He looks quite funny right now as he is missing the top front two and three of the bottom front. He can't eat much as he has no teeth to bite with. And to think we go back on 6 July to put the maintainer in...I wonder if he will decide to pull some more. Don't worry we love our dentist and he not out for the money as he has been giving us some deep discounts on the kids dental work. YEAH for an honest dentist. The tooth fairy paid him well...I guess when you get mulitiple teeth pulled you get an award.

Diagnosis...maybe?

I am a little late in posting about our visit this week. We took her in on Tuesday to get her checked again as her ANC was zero for the second week in a row. Dr. B. told us that she either has Kostmann Syndrome (otherwise know as severe congential neutropenia or SCN) or cyclic neutropenia. The only difference in the two, is that SCN your neutrophil levels never make it over 500 and with cyclic she would have a roller coaster neutrophil levels. Both conditions are life long. Treatment for both is the same. Neupogen shots for life. Dr. B has sent away for genetic testing to determine which of the two it is. There are mutations that would identify each. From what we have read and researched we believe that she has Kostmanns but do not know for sure yet. But either way she will be recieving neupogen shots at least three times a week right now. We are hopeful that she will beable to get down to once or twice a week as the neupogen shot have some bad side effects. However the benefit outweighs the side effects. So right now I am practicing on oranges so that I am able to administer her shots to her. Fun, Fun. When we get her genetic testing back we will let you know.

Unbelievely ANGRY.....

I just got a call from our Dr. about Annaliese's ANC count. At the appt last week they said it was 1300 and I asked (alright I TOLD her) to run a manual because I didnt believe that number and I guess I had every right to believe it as her ANC is ZERO!!!!!!!I am so mad I could hit something. Once again we took her to church thinking we were in an okay zone to do this but I guess I was wrong again. We have another appt. tomorrow at 1045 and boy will the you know what hit the fan when I see the dr. this time. I will update tomorrow and I better have an idea of what is going on or at least a game plan to figure it out.

Today's Visit with Dr. B

We had our follow up with Dr. B today and we found out that her hemoglobin in going up we are now at 9.5 so that is a step in the right direction. Her neutrophil (if the machine is accurate) was at 1300 but because of past experiences we are not to confident in that number. I dont think I posted about what happened with that. June 2 they drew her blood and told us that her ANC (absolute neutrophil count) was 2300 and they ordered a manual differential (another blood test where a person actually reads the same blood) only to find that her ANC was 107. Yes you read that right 107!!! Thus resulting in her hospital stay. So you can understand why we are hestiant to believe that number. We didnt get anymore information than that today. We are scheduling an appt with our Peds dr. to discuss what information we are not getting from Dr. B and hopefully can resolve some of our concerns. We have quite a few and are getting conflicting replies. When we know more we will let you know.

Recap

Seven weeks ago Annaliese got sick and had to be hospitalized for dehydration, while there she has some blood work done. We found out that she didnt have an immune system due to the lack of neutrophils. We were told that if she was to run a fever that we HAD to take her to the ER immediately. A fever and neutropenia are not compatible. A fever could cause her to go septic and could kill her if not treated within just a few hours. We had been lucky that she had not had a fever, when you consider she has not had an immune system to fight any bug, well our worst fear came true this past Friday. She started to run a fever and had to be taken to the ER where she was put in isolation. Everyone that came into contact with her had to wear gowns, gloves, and masks. When she is fevering she has to have every test run because they have to find the infection. She had blood drawn, urine samples, x-rays, and was started immediately on IV antibotics. We talked to our hematologist/oncologist (Dr. B) and he wanted her transfered downtown to the Children's Hospital right away. She was taken by ambulance to the Children's Hospital where she was admitted onto the oncology floor. We met with Dr. B and it was decided that she would have a bone marrow aspiration done first thing in the morning. Bryan stayed with her during the procedure (ask him when you talk to him how that was) and then the waiting started. We got our results this afternoon and there is NO CANCERS at all. Her bone marrow is clean and shows no signs of being abnormal. Dr. B is now convinced that she has cyclic neutropenia and has done some genetic blood testing to see if this is long term or something she will outgrow. We will have the results back in 4-6 weeks. The treatment depends on her cycle and how low she will go. It could include preventative antibotics or nuepagen (spelled wrong I am sure) shots. Until then we are to continue to monitor her for fevers and if she gets them we have to take her to the ER to get her levels checked. We are hopeful she will outgrow this as we dont want to have anymore 4 day hospital stays. Here is Annaliese right after we got to the childrens hospital and another picture taken right before we left the hospital. Aside from the fun described above, we are also keeping an eye on Annaliese's hemoglobin levels which is slowly dropping. Today her hemoglobin level was 8.4 and normal is between 11 and 13.

Dont know what to think about yesterdays visit

The title tells you just about as much as have figured out. Our hematologist is not very forth coming with information UNLESS you ask the right questions. If we had any clue what was going on our questions would be much better than they have been. This week her hemogoblin was still at 8.9 (normal is at least 11) and her hemacrit was even lower than last week. Her neutraphil level was higher than last Thrusday, however the doc. doesnt think it was accurate. So he is running another test to make sure it was right, if so she is now at 2300. Which would indicate that she no longer has neutrapenia, HOWEVER the dr. thinks she might have cyclic neutrapenia (meaning that every 3 weeks her neutraphil levels will bottom out for the rest of her life). He has said that depending on her blood results next Tues. (our next appt.) we may have to have her blood drawn 2 times a week for 6-8 weeks to figure out what kind of pattern she has. He also mentioned possibly doing a bone marrow biospy. So once again we will be waiting to find out. The only plus is that they draw and run their own blood right there (a CBC anyways) and we have the results within minutes. What we can't figure out is why he would put her threw so much blood work when her blood level is so low right now. So if you are confused, join the club, we will update again next Tuesday when we HOPEFULLY know some more. Thanks for everyone who has kept her in your prayers.