July 2006 Archives
Hello. I'm always posting medical updates, most of which are sketchy at best with what the future brings for Simons treatment and today I just wanted to share my joy with all of you. We had an awesome weekend with the kids. We had alot to get done and it was very busy but our kids were so goofy this weekend, including simon and it just lifted our hearts and moods tremendously. Simon is coming into his own personality and the girls are playing right into it with him. They are teasing him, playing tug of war with him, borrowing his toys, and he is letting them know he does not approve of that, and just plain being kids. Dave and I stopped several times and just laughed at them. Laughed at their fighting and the fact that "its started already". One really heart melting thing for me was that all weekend Simon ate 3 meals a day and snacked with the girls. It is amazing how much is relieves me and eases my stress level. So while last vntrs were down, Simon continues to keep us in check and say "hey look at me mom, I'm fabulous". God Bless him every day going forward with this kind of growth and attitude. We need all the knocks, crosses and prayers (as my friend charolette always says) now more than ever. So Please pray for him and us that things move in a very positive manner. We feel so overwhelmed by all the supporters and its amazing how you all have stuck with us so THANK YOU so much. God Bless and we hope your week is filled with amazing things. Pick out something to focus on and smile about it everyday. I plan to. Blessings Tracy and David
If your going through hell, keep going (winston churchill). Well we are managing to plow on through and Simon is actually doing much better this week. We had a bit of a scare on Saturday when I picked Simon up off the floor and didn't realize I was standing on his G-tube and ripped it right out of his stomach. I was a wreck. Not only was I freaking out but the guilt was and is tremendous. Dave spent 6 hours in the ER on saturday and they got the tube back in. I was mad because we only had one week before he was to get the "button". So at my appointment on monday with stem cell I also went to see pediatric surgery to check on the tube, which then had two holes in his stomach. Seems the truma from it being ripped out caused a second hole. They decided to place the button then and its been ok. Seems quite a bit tender to the touch so I will follow up again on Friday. Life is not complete if I don't run to Childrens twice a week. Dave and I also made a parental decision and cut back on the amount of time he gets night feeds and since we have shortened the time the vomitting has stopped. We also stopped the diamox via Dr. Duerst at the same time so not sure which helped it to stopped. With that Simon is taking in a little more food and not gagging at all when he swallows. He started speech/feeding therapy today. Hope and pray this is the start of him loving up food. We'll see. Yesterday at clinic when things seemed to be overwhelming and I felt very alone (my sister had the girls and they were having a wonderful time and dave was at work)I had a very pleasant surprise when I ran into one of Simons stem cell nurses, who happens to live not too far from us, and we offered her a ride home. Sandy your company and conversation made my day and it was such a welcome sunny part to my day, thank you for your peaceful presence. You are always such a comfort to me. So see in it all the best things are the people who make up life and how they have come into your life, those things make the difference in the day. Vntrs due to arrive tomorrow. I'm holding out for them to be better but Simon seems to be holding his own at 20%. You Go Simon. Hes a joy as are his sisters. Alot of people ask me how hes doing developmentally. I just want to say we are very pleased with Simons development. He is small for his age but he is vocalizing, not saying words persay, but showing likes, dislikes, getting mad, tug-a-war with his sisters over toys, sitting, putting weight on his legs and waving, wildly clapping and very slowly learning to eat. So we are very happy and know he will be ok. He is a gift and a special boy that will prevail and be great. God Bless you all. Kiss those around you and if you keep putting off doing something for someone you love, do it tomorrow. I lost my aunt Helen today, she was a very beautiful lady from the inside out and I hurt for my grandma who lost her only sister. I kept wanting to send her photos of the kids with a note but daily stuff took up my time. Don't put things off today. Keep the faith and the prayers coming we so appreciate them. Tracy and Dave
Its another numbers sorda day here for us. I talked with the drs. and found out last week that Simons vntrs were only 17% total, 54% T-cells of donor cells, which is the one they are keeping their eye on a little more. I was disappointed although not surprised. Last week we had a bout of NEMO skin condition and we had a biopsy done which showed no infections and basically that it was the NEMO causing his skin to flare up. We had hoped that was all behind Simon. He was pretty miserable but it started to clear up and is now mostly very very dry and itchy which we are trying to take care of with creams and baths and such. We spoke with Dr. Uzell at NIH and she is going to see if we can come there for further work up to see if the transplant will need to be redone. We are heartbroken here everyday. We pray for that miracle that Simons immune system is doing its job but he is vomitting alot in the morning and waking up before we can get to bed and vomitting at night. We just don't know what to do. He doesn't seem his happy self at all today. We were able to take the kids and get away for 3 days up to Green Lake WI to relax, which was very nice. We try to maintain some normalcy and at the same time have all of this in a cloud over our heads. Please keep praying for Simon that this can be behind him sooner rather than later. He is having major GI issues which we had hoped would be cured by the transplant and the addition of Marriana's good cells. This is not the case and so far has not been the case for other NEMO boys. I don't know how these families have gotton through all of the years of this, we feel we are on our last legs some days. God Bless Jack who is doing really well post transplant and home enjoying things summer should hold for children. I look to the Hagelins for guidance as they have been through it and continue to strive for things to be better for Jack as well. As if the transplant in not hard enough, you still are left with GI issues afterwards which to me, has been the most challenging issue of all of this. To see your baby throw up everyday is heartbreaking and then not want to eat or drink because of it. AFter all of this I had to take the girls to their 4 year check up and this one was a two shot, tb test and a finger prick, well, it was not fun for them and they cried and broke my heart but two suckers and a bag of cheetos later, all was forgotton. Kids are great arnt' they. I long for the days I can acutally take Simon in for his immunization shots. Please pray for Simon and for strength for us. God Bless,
Its been awhile since I've written. There is not much new to report. We are taking things day by day and finding that is very hard to do. Its frustrating waiting for Simons eating to improve and waiting for his skin to clear up again. He has not had a skin rash in months and months and the last two weeks I've watched him itch and scratch and blister up with red, what almost looks like hives. Its disheartening to us to think the cells he does have of Marrianas are not enough. We go through the days, laugh, try to have fun but you feel that underlying stress of not knowing if you son has enough immune system to fight off the big infection. Its a bit scary. We've switched some meds around, are trying to increase calories in Simons G-tube feedings and knowing thereis no end in site for that and no view of seeing him enjoy food for a long time coming. Its hard to think I'll be getting up for the next year or more adding formula to a bag to keep our son growing. But you do what you have to do. Okay on a lighter note. We had a very nice 4th of July. The girls turned 4 and the weather was awesome. We really just enjoyed the day with parades and bbq, a little swimming and of course, the fireworks that are put on just for the girls. Even Simon sat and stared up at the dazzling sky. It just felt good to be together. Keep Simon in your prayers. He still needs his miracle. God Bless you all. I have some great photos I will be posting when I have the time and energy to do it so check back for that and a cell dance this weekend wouldn't hurt, we get vntrs on monday. Ciao.
