Lauren is doing wonderful! She finished round 10 of antbodies on May 10th and has been going nonstop ever since! All in all the round wasn't too bad - definitely better than the one before. She still had lots of pain but at least this time it was when we would normally expect it and it ended when it usually would. For some reason this time, during the first week, she had a headache almost every day even while she was all doped up on the pain meds. The doctors didn't know why and were glad when they subsided over the weekend break. Lauren did have to get "poked" more this time around. Usually during antibodies she gets two IV's, one on each Monday, and she keeps it all week. This time she ended up with four! On the first Friday as she was getting to the end of her premeds she asked me why her hand was all wet. It turned out that the IV had a crack and was leaking so we had to make a quick trip to the IV room for a new one. Then on the second Friday when they went to hook her up to start the premeds they couldn't get that IV to flush at all and when they unwrapped her hand (which was red and swollen) it was obvious it was blown, so another trip to the IV room. Unfortunately both times we couldn't wait the 30 - 45 minutes that it takes for the emla cream to numb the skin so we just had to do it. She was such a trooper both times! Lauren told Rachel, her nurse, that she was gonna cry and might scream but that she promised she wouldn't kick her. I felt so bad for her. I think her little veins are just tired of having so many IV's in them!
One thing that bummed Lauren out these two weeks was that we couldn't do most of our "fun things" at the RMH this round. The whole house was under quarantine! It seems there was a "possible" outbreak of chicken pox with one of the kids at the house the week before we came in. Since a number of kids were "potentially" exposed and since chicken pox can be so harmful for a child with no or low immune system, they had to basically close everything down. The playroom, computer room, living room were all closed and there were no dinners, events, or trips scheduled. The kids were all supposed to stay in their rooms and no visitors were allowed. Talk about cabin fever! Luckily for Lauren her best buddy Courtney was also there. Courtney is much older than Lauren but Lauren just adores her (and her sister Aubrey too!). Much of the time was spent in either of our rooms, out front playing with sidewalk chalk or at the pizza place! We did get to catch up with other friends that we hadn't seen in a while as well as meet some new families. Unfortunately two of our friends received bad news while we were there. One little boy named Hunter has relapsed for a second time & another named Aaron who has been trying to get to transplant now has progressive disease. Both these kids have started new courses of chemo and they (and their families) could use some extra prayers right now.
On our in between weekend home, Lauren and I went on an end of the year class trip, to a nearby zoo, with her preschool. Lauren's teacher, "Miss Melanie" came with us and we all had a great time. Lauren especially liked the giraffe named Twiga that tried to lick her hair! There was a little petting area that the kids could go in with goats and sheep. Some of the kids were either afraid or "grossed" out but not Lauren. She was marching around trying to get them all to give her kisses! It's hard to believe that she's already finished with her first year of preschool. I remember a time when we didn't know if she'd ever get to preschool. Now look at her!
Today was the last day of the kids swimming lessons which they have been doing daily for the past two weeks. Timmy, my little fish, was in level 3 and I got to go in the water with Lauren in the pre beginner class. Lauren was a little anxious at first because they don't let you use "swimmies" but once she realized that I wasn't going to let her go she had a blast. We all had a good time. Timmy even jumped off the high dive for the first time today. I know the kids wish the lessons would go on longer but I'm greatful for the break. The past two weeks have been so hectic running from school to swimming to karate or soccer every day. Now the kids will have a little more time to just play outside. Oh and Lauren is turning into such the little farmer - she just loves getting dirty helping daddy plant the garden!
Lauren has been doing great at PT. I think the swimming definitely helps! She still has some weaknesses and some other issues but the difference from when we started is huge. After this week we should be able to cut back to once a week visits. Then at some point to every other week. We also had a visit to the eye doctor this week. She's happy with how Lauren's eyes look. They're perfectly straight with the glasses and just a teeny bit crossed without. So she still has to wear the glasses but she can go down a step on the prescription strength. It's funny.... when we walked into the room with the doctor, Lauren put her hands on her hips and said "ya know - I can see good with my glasses AND without them and I don't really think I need to wear them". So the doctor explained that she knew Lauren could see fine and that the glasses were to keep her eyes straight. Lauren said "Oh yeah, I knew that. Ok I'll wear them"
Since her old glasses are so beat up and too small for her now, we went to pick out new frames this morning which will hopefully be in next week.
After PT tomorrow Lauren has her 6 month checkup with the orthopedic. He'll do another set of back xrays to make sure the kyphosis and scholiosis curves have not progressed. She has been sitting borderline for needing a brace so I'm hoping they haven't. Her therapist doesn't think so since she looks so good and the muscles in her back are so much improved. Next week we have an appointment at the Valerie center for a checkup and to draw blood for the HAMA. If she's still negative we'll be heading back to the city for antibodies the last week in June.
On Saturday, after Timmy's soccer game, we'll be heading down to Bill's parents for the rest of the Memorial day weekend. We've been running so crazy lately and Bill hasn't been feeling well all week so it'll be nice to just relax and visit with everyone.
As always, thanks for checking in and for ... well... still being here with us and for us. We greatly appreciate all your good thoughts and prayers. Have a great weekend!