26

January 26, 2007 Day +1395 Day 1093 off therapy
What a busy day. We started the day as usual. However, it got a little busy as the day went on. I left work at 11:15 and went to meet with Mrs. Thornton (k5 teacher) and Miss Howard (speach teacher). I feel much better after talking with them. The homework that was such an issue is really just something to do periodically to keep him from forgetting what he has learned all year. We do not have to battle through it every night. Mrs. Thornton showed me some work he has done and I was very impressed. This may not be exaclty right, but when it comes home we will post it here for you to see. Anyway, he wrote I can ride 100 motorcycles and he drote it like this, I can rid 100 motrsykls. That is pretty close, but I know it isn’t exactly what he wrote. Point being, he is doing very well at this point in the year. We discussed having him repeat kindergarten due to his social immaturity not academic skills. It was kind of hard to hear the teacher say he may need to stay back, but it was also kind of known. He is small and did miss a lot of years to gain social skills like other kids. He has been through a lot and a lot of cancer kids do repeat grades. He is also a boy and boys often need to repeat. We do not have to decide until the end of the year, so we will be monitoring progress and discussing it more. My one concern is that he is such an emotional child that I am afraid he will label himself dumb which he is not or that he will feel so “blue” about his friends moving up and him not that he will lose confidence. However, I would rather hold him back now than in an older age where kids will be cruel about it. UURGH, parenting is hard! We have a lot of friends cancer and non cancer that have been through this and we will talk to them. We also have the utmose respect for Mrs. Thornton who I know only wants what is best for Taylor, so we will certainly be taking her advice to heart. I wish she could just go to first grade!!!

After the meeting at school in which the fabulous Mrs. Thornton arranged to do while Taylor was in technology and then could be checked out without me having to make several trips (thank you), I checked him out and we headed towards Children’s hospital for his pulminolgy appt. We ran into Meredith which is always good. We got registered in the clinic and then went up to get a chest x ray. It kind of sucked since he just got one in December, but what do you do? As soon as we walked back into the clinic they called us back. He was 106.78 cm tall but I never saw how many kilos he was. I don’t imagine he weighs much more than his usual 37 pounds. We were sent to a room and did some of the standard things. He blew into the dolily for lack of a better word. That took a few tries because he wanted to suck in a second breath and you can’t do that. He finally got it though. The nurse came in to ask all the questions. We got to chit chatting and found out she lives on out street. How cool is that! Now we know one of our neighbors. She was a very nice lady. Soon Dr. Ansari came in. I LOVE him. You all know I love or ONC. team, but I have known them forever and have been through a lot with them. However, I don’t usually instantly love our docs, but this guy is great. He was not an arrogant turkey like Dr. Hill (yeah, I said it for the world to see) and he takes the time to sit down and talk rather than run in and out in 5 minutes unlike our regular asthma Dr. He took the time to explain that sinusitis has two kinds allergic and bacterial and Taylor has both. Go figure! Allergic is just what is says, an allergy to something causing clear drainage, but due to his narrow passages he gets clogged up and has sinus problems. When it is green drainage it is bacterial, obviously. He gave us good news in that we did everything right in getting the ionic breeze and all the hypoallerginic bedding stuff. However, bunk beds are the worst thing for him. He sleeps on the bottom and therefore all the dust from the top hits him. He will need to move to the top or take them apart. He wants to sleep up top, so I think for now we will just do that and maybe later take them apart and move one to Logan’s room. He has upped all his meds. If you remember the interesting study about Singulair then you will excited to know he upped that med from 5mg to 10mg. I was very happy to do that. He will not take a .63 dose of zopenex rather than .31. He can not figurte out why they left him at that low dose since there are studies to show that it doesn’t work. We will try these new doses for a few weeks and then go back for an upper GI. This will not be a pleasant test, but IF he has reflux it could be the cause of it all. Wouldn’t it be great if this Dr. found and fixed the problem that easily!!!! I promise you all right now I will kiss him if he does! We go back on Feb. 28 for the GI test and again on March 30 to get results. I do not look forward to him having to miss school again nor getting him to drink the flavored barium, but I am eager to see if we are closer to an answer.

After the clinic visit we headed out but made a detour to the blood drive and saw our good Red Cross buddy John. We also saw Dr’s Berkow, Bryant, and Barnhart. It is always good to see them outside of clinic. We ran up to 4 tower, but didn’t see any familiar faces. After all that is was time to get Lolo. Temperance made the mistake of telling me she was off today, so I conned her into picking up Logan so that I didn’t have to take him with me. Thank you Tempy!!! She and Chris were even brave enough to go out to eat with him! I picked him up and ran home to get my party stuff together and head to the purse party. I I got the cutest purse, I can’t wait for you all to see it!