January 2008 Archives
As it snows here in Chi town I cannot seem to shake the exhaustion I feel. I've been fighting a chest/sinus thing for almost two weeks and determined not to let it get me down I am trying to rest a little more which means mine and Simons days have been boring to say the least. I have no energy. I am trying to get us ready for our trip which comes in just about a week and not try to freak out about it all. I'm trying to go with the thought that it is much needed and will be a trip of a lifetime filled with alot of fun and anticipation of joy as the kids get to witness the most magical place for children. Dave and I are pretty excited as well. Simon has been doing pretty well with eating and drinking and he continues to amaze us with his vocabulary and ability to be the happiest kid I think I have ever known. There is so much these kids go through and they withstand it all and come out unscathed. I don't think I could have handled half of what Simon has and still be cheerful. We are thankful for so many things today and I just try to keep going with the notion that Gods plan is for our family to help others once we can completely figure it all out. Simon asks for nothing except love and friendship and longs to be with his peers just being a boy. So today I ask for a prayer for simon that he will soon be able to safely enjoy all that a boy should. That he stays free from infection or virus illness and that this trip gives us all the renewed strength and hope we need to plunge forward and get through the rest of what a transplant puts in front of you. We will not feel safe until we hit the 5 year post transplant mark and alot can happen in between. So I pray for strenth to live in just the day in front of me and for my family to enjoy what life has given us. I ask for a very special prayer as I feel all of your prayers have helped us so much for our friend Jacob and his family. He is suffering from some serious skin issues and liver numbers that we need to pray to God for healing. Without saying too much as I don't want to put his familys information out there, we love them and ask that good news comes from some of his testing and that he may move forward and heal. He too is a strong and courageous boy who deserves to feel the life of a normal 4.5 year old. God Bless you all. Hug your kids and marvel in the fact that they are healthy and strong, even if its strong willed. Thank you. Love Tracy and David
In the life of Simon over here there is not much rest and tonight I am feeling completely wiped out and exhausted. He is not sleeping well at all. Some of it is due to itching, some of it is due to not wanting to be alone in his room so Dave and I do heavy sighing from 12:30 am - 3 am taking turns walking back and forth down the what seems like never ending hallway between our room and his to try and comfort him but not give into him. So far he remains in his room and I wonder when a time will come that he doesn't need us so much at night. It also seems to be the patten that once I fall asleep, like early this morning, my Isa ended up in my face after a bad dream and I carried her to her room and crawled in bed with her at 3:30 until 6:15. Tonight due to the itching of the day he will get adarax and since I only let him nap 1 hour I'm really hoping he will make it through the night. We are still battling eating/tummy issues. Simon has been saying his stomach hurts for the last 3 days and his stooling has increased which worries me and I'm asking you pray that the diarrhea/pain is not returning. He is very spirited and happy as always and we are restarting Physical therapy this week and I am waiting to hear about the eating clinic that I want him to attend weekly. I will put a call into the place tomorrow. So hopefully things are moving along. Everyday seems to always have its ups and downs associated with challenge. We found out our Special Wish trip date and we will be going to Disney in mid February, not too far away We are all very excited and I pray I can keep everyone healthy until and through all of that. So I have to go and do a bit of work and then go and collapse, thanks for looking in on us, write a comment I miss you all writing to us. Take care and God Bless. Always prayers for Jacob, Samuel, Connor, Rhys, Jackson, Margo and all families affected by illness. Tracy and David
I had to post this photo of Simon this morning. He wanted to have an egg sandwhich just like big sister Isabel and while he struggled to keep the egg inside the bread and to actually bite through a folded piece of toast he had the will and the desire to try and that to us is a step in the right direction. While his eating is certainly not that of "normal" he is trying and doing better since, what a shock, his skin has cleared up. I think today is the first day in 2 months that I have not seen him scratch at his skin intensely. His skin looks beautiful. soft and pliable, thanks to alot, alot of aquaphor. The scalp is still very dry but we are working on more fluids (which is not successful at this point) and doing some mineral oil in the scalp to try and cut it down. I am about to restart alot of his therapies in the next couple of weeks which will keep us busy. I'm hoping to get him into this program where we actually go to a facility (which is brand new) and prepare a meal where he sits down with other kids to eat and drink. Its a therapy that I just found out about through a friend of mine and have made several calls to try and get us evaluated, to no avail yet but I'm hoping this will be the push that gets us over this eating hump. Oh and his last igg came back at 668 so for us that means no ivig for now. For that we are super thankful as we feel ivig infusions contribute to his skin issues. After talking with GI we are not going to do anything with new meds until his symptoms reoccur and then try a low dose of an antibiotic to help with motility. I feel strongly that whatever goes on on the outside with simons skin is intensely going on inside in his GI system. So please pray for no outbreaks of skin and for Simon to move forward and start to eat and drink more. We are getting together with friends today so Simon is excited to have some kids over to play with. Enjoy the weekend and God Bless. Keep the prayers coming for complete healing and no more set backs. Thanks. Tracy and David
Things went relatively well today. Labs looked good, hemoglobin is staying at 11.8 which is great since we stopped the iron meds. His stooling is steady and he even ate a little bit today. His skin seems to have cleared up but he is saying its itchy so I'm afraid another outbreak is on the horizon. I was a bit disappointed to not be able to get connected with GI but talked with stem cell and they are going to talk to them and try to figure something out. Of course, on the way home simon told me he was hungry. First time I heard that in three weeks and he carried through with eating mashed potatoes and carrots like he hadn't eaten in weeks. Oh yeah, he really hasn't so.....its always a changing puzzle with him and I'm never sure what is the right thing to do. The fact that he lost his eyebrows and the only thing I can think of is the ED part of his disease is playing some role. So, again, I am concerned for that. We did get the go ahead to travel for our special wish and as nervous as I am to do it I think it is something our family needs and my doc, with some restrictions imposed, said he thinks it will be okay and is encouraging us to go. so.....pray for good health for simon and for his counts to be good. We cannot check his immune function for another 2 months but we need to keep him healthy in the meantime. While I wait for his igg level to come back we already know that we will not give the same type of ivig this time around and I ask that you pray that his now clear skin, does not get affected by the infusion. Thanks so much for staying with us and for the prayers, the prayers are needed and mean alot. Okay I am going to turn in early as I have been up since 3:30 am today and I am wiped out and no I did not choose to get up at that time. God Bless you all. Our new year is starting out positive and I hope to keep it all going in that direction with some change for us all. Love Tracy and David
Well today marks the eve of another new year. With this we have hope and faith that it will be a better year than 2007 was as we move on to complete healing for our son, our family. I have been reflecting the last few days as we have all just been together hanging out and enjoying each other (mostly, with a few sibling squabbles) and really am anxious for what this next phase of life brings for us. It is sometimes so hard to live in the moment as my mind always seems to wander to the "what ifs" and always worry about the issues going on at hand, but I truly feel we are on the road to figuring it all out. Simon has been dealing with skin issues and not eating much and having a runny nose so we are hoping its all related to a minor cold and will soon be consuming food like that of a giant, until then we continue to use the g-tube and are trying very hard to let it go and not push the issue, but as a mom (you other moms understand this) a child who does not eat makes you very anxious. So we are due to be at the hospital on the 7th to change out Simons g-tube (this is one thing I refuse to do myself as it's a quick change but the thought of pulling a tube out of my sons stomach and reinserting it makes me really just want to pass out) so to the hospital we go and then up to clinic for labs. Well we are off for some fresh air with a much needed walk/playtime and then I will be getting my hip x-rayed for constant pain as it is long overdo for the last year. Us moms always put ourselves off for too long and you know once you hit that over 40 marker it all goes to pots. We continue to pray for complete healing. For us to stay off immune suppressants so that we can see where his immune system is for the first time ever in his life with the hope that it is starting to work and function in his body with Mars new cells as part of him. With this new year there is new hope, new faith and a lot of desire to be out in the population and enjoy others and kids activities like other families do, so Keep the Faith and keep praying for Simon. Happy New Year for good health and good things for ALL. Keep Tom in your prayers and a happy birthday to Olivia who is turning two today and Auntie Melinda (whose age we won't disclose) ha ha. Lots of love Tracy and David
