August 2007 Archives

Well I made an unexpected trip to Childrens today. Simon has had increasing diarrhea for two weeks now and it seemed to come and go but yesterday it was 4 times the amount and liquid and mucus. That was concerning enough but then at 12:30 am he decided to puke up all his night time feeds all over the place and continue to poop and cry and roll around until I finally got him to fall asleep at the bottom of our bed. He didnt' want to be touched or consoled and wanted to rest down there. So I turned myself around and layed next to him until he fell asleep and lifted him up between Dave and I so he would not fall out of bed. This was the third time this week that he has ended up in our bed due to discomfort. Needless to say I am exhausted. We knew something was going on because of his waking during the night. When he is feeling good he sleeps through so this morning after 5 diapers by 8 am I call down to Kim, my rock in stem cell, and told her what was going on. She suggested it sounded like rotavirus or c-diff(caused by antibiotics) neither of which I wanted it to be because those things stick around for a long time and cause alot of problems. After gathering up stool samples I put him in the car and headed downtown. We got him on fluid bolus and drew labs and sent the stool culture. I am happy to say both rotovirus and c-diff are negative. His labs looked great and he shows no sign of dehydration. We were on our way home to watch him and keep him well hydrated over the weekend and pray for this to resolve so we ask that of you. Please pray we see normal stools again by monday and his appetite picks back up.

Since it was the girls first week of kindergarten and it was both emotional and challenging yet exciting and really joyful to see them coming into their own already we decided to go sit outside at Salernos and have pizza and celebrate for the girls. We had a great dinner. Simon was entertaining as always and picking at food and enjoying being out even though you could see how exhausted he was. We ended the week on a postive note and will pray for much more positive energy to come our way. We hope you all have a safe and happy Labor Day and ask that you continue to pray for our family for strength and good health and complete healing for Simon. God Bless Love Tracy and David

Celebrate this Special Day Simons 2nd Birthday. Happy Birthday little man. We love you so much. Let us run with patience the race that is set before us. hebrews 12:1 KJV So true to be spoken when you are thrown into a life of transplant. You must be patient to let the new cells grow and get strong enough to do their job. So we wait with patience and hope and prayer. May the coming year score high in a life lived by the grace and blessing of God. We sure have so much to be thankful for. Simon is well and thriving and laughing and talking and loving life. His donor cells this week are very stable and good. He is battling diarrhea again but he will recover as he has. May good health continue to bless him on his 2nd birthday and beyond. We planned on doing some fun things today outside but the weather here in the midwest has been less than cooperative. We actually were caught inside toys r us yesterday without lights and winds 75 miles an hour flying past the store. Next time you are in toys r us look up at the ceiling and imagine the roof being ripped off, that is what I was doing for 30 minutes while we were held up there. It was quite frightening and we were without electricity until 7 pm last night so the whole day was a bit crazy. Today, we hope to just be and do whatever comes our way in between the approaching storms. We pray everyone is safe and dry and their basements are not flooded. God Bless. Do us a favor and take a few minutes to pray for our sons complete healing and future health on this his day of Birth. Thank you all for continueing to follow us -- we are SOOOOO blessed. School starts next week, we met the girls teachers yesterday at the park and we are all very excited. Lots of change Lots of positive vibes. :)

So far today has been a great day. The girls and I were able to meet friends at a splash park (something we really have not done all summer) due in part thanks to Dale who came to hang out with Simon through Ryno Kids Care, thank you so much. It was so great to see the girls having fun with their friends like summers should be yet so hard to leave Simon home due to the heat and fact that there was a water park there. He was saying no mama I come to anderson too. I almost cried walking out. But he had fun and managed to forget us quickly. We also got a call from Kim, I love her and her bubbly voice when she has good news and our counts are stable at 96%. So we are happy and are continuing to drop the cyclosporine level this week with the goal of having it totally gone by end of OCtober so we can see what his new immune system will do. Please pray the donor cells continue to stay stable so we can move on to other issues like lack of sweating. I talked with the NFED (NFED.org) and they are trying to send us out a used cooling vest for simon to use for now to relieve some of the issues associated with not sweating and being outside in 90 degree heat with 100% humidity. So we are waiting for that to arrive. That will be the next step to focus on for simons well being. He also is sprouting a few new shark teeth. I keep hoping they will be big enough to cap or do implants someday. For now he is adorable and happy and healthy. Thank you God. Simon has to have a mole removed in October that has been evolving on his leg and we just want to get it off before it causes us any further worries so pray that is clear and nothing for him.
So we will wind down the summer with dad being off a few days and us trying to do a few fun things with everyone with caution of course and then its the start of full day kindergarden for the girls. BIttersweet feelings there. It will be the first time in the girls lives they will not be together and that is hard for all of us. Well enjoy the weekend. Simon

This week I am turning two, on Friday actually but my mom and dad had a Birthday party for me on Saturday and it was so much fun. I got to hang out with my cousins and aunts and uncles, grandparents and my great grandma. It was really nice to be with all of them because its been a long time since we were all together. I even got alot of cool new toys and some clothes and jammies. I was so happy. Running around and just hanging out with my cool crew of boys. I'm feeling pretty good besides my rash and a little problem with my "guy" but I will see my girlfriends at stem cell tomorrow for my iv meds and count checks so continue to pray for me because I really appreciate all of the prayers. Its been a bit of a rocky start for me but I have been doing good and I will continue to heal. Thanks for always checking in on me. I'm so lucky to have so many people who care and pray for me. Come on sissys cells be stronger tomorrow. Good Night. Simon

Well we had a bit of a rough night last night with Simon and I should be exhausted but I can't seem to fall asleep tonight. Simon has been having some itching issues which are not unusual with his skin but it has gone to his groin area and last night he was miserable and threw up at midnight. He rolled and tossed all night long saying "mama it hurts" and grabbing down there. I spoke with the docs today and along with the hurt he has almost pimple like dots, and no appetite. They are thinking he may have a fungal skin infection as the bumps are in his areas where there would be moisture, providing he actually could sweat. Regardless this is where fungus would set in. We have started nystatin cream and upping one of his current meds dose and are hoping for relief. So far he is sleeping peacefully after being up all day with no nap, he should be exhausted. We ask for prayers that whatever is going on be resolved with the cream and move on. Please pray for that for him. Our prayers go out to all the boys undergoing this through transplant with affects and issues and for those who await transplant and for our dear family who still grieves for their son. We are all here together no matter what the situation, we all have sons with NEMO and we all should lean on each other no matter what. God Bless everyone that they may be strengthened.

I had hoped to post some photos today with Ryne Sandberg as we were invited to and attended the Kane County Cougar game today which they were playing Rynes minor league team and we were invited by his foundation Ryno Kid Care to join them but for the first time really I experienced first hand how much Simon cannot tolerate the heat because he cannot sweat it out of him. He pretty much took a plunge 20 minutes after we got there (the fact that he has been up since 6 am without a nap didn't help) but today was way too hot. We arrived late in hopes of making it to the end to meet, take photos with and get signatures from the great former Chicago Cub player but we just couldn't put Simon through it. So the things stayed for signature and we left. We hoped at the very least the heat might sock some of simons congestion out of him but we'll have to see. After some air conditioning, food and a much needed nap he was back to himself talking non-stop.

We will be celebrating his 2nd birthday this weekend with family and oh what a two years it has been. He is excited about it and his cake and the fact that is his birthday. He keeps saying "my birthday is coming" and then hums bob the builder song as that is what will be on his cake. too cute. We go back to stem cell for another iv infusion of meds on the 20th and vntrs so since we lowered his immune suppressant we pray they are still up. He is having diarrhea too so we hope that slows down as well.

Stay cool and next time your all sweaty and your body can do what its suppose to to cool off think of Simon and how it must feel to not be able to do that and all the heat stays inside. I can't imagine it and we need to figure out a way to keep him comfortable, the spray bottle isnt' cutting it. sounds like a cooling vest is in need, afterall he keeps telling us he wants to play soccer so ..... thats in our future. God Bless, keep praying. Thank you. Tracy and Dave

WHEW, counts are in and they are up. YEAH. I'm starting to get a little crazy about these numbers and I realize its all in God's hands and I just can't do anything about it so I will relish in the next two weeks and keep my prayers going and let my faith be in him to heal Simon. No b cells were detected again. I was told none were detected in any of the kids this week so that might be lab error, who knows. Sometimes I wonder if our wonderful nurse practitioner trys to just keep me sane and make me feel better. Whatever the case I thank her for all her diligent work and feeding into my needs because she honestly keeps me hoping. We are lowering the cyclosporine to .5 twice a day. We are still .2 away from where we started it before we had to bump it to the sky but every 10th we go down is one step closer to getting off of it and letting the new immune system work. Simon is still miserably congested. He ate like a champ today though despite it all. Gotta take the good with the bad or vise versa. He and his sisters were having a ball tonight running around and playing and dancing to radio disney, they love that channel (frankly I know more of their songs than any for my own age) and we had a fun night. I hope tomorrow brings more healing. Continue to pray for our little man and his healing and huge donor cell numbers as we lower the immune suppressant. Keep all our NEMO boys in your prayers. Connor started his transplant in Cincinnati and he and Jacob are now there so pray for them and their families. Our cirlce grows.....Okay I have to go I still have to work but thank you to Dale for her two hours playing with my kids today it definately helped me get a head start on my night time work. God surely has blessed us with angels. God Bless. Tracy and David

I had forgotton how spending a very long day at the hospital can be very draining. We started our ivig today and about 30 minutes into it simon started to get red and break out. Strangely when we stopped it it started to clear. I headed down for the g-tube change and went back up to stem cell for a skin check, since it looked a bit better we decided to go forward and restart the ivig. His igg was a little lower so we all felt he might need it and since he has this cold, with a bad cough but clear lungs we wanted to give him the boost that hopefully the ivig will do. We made it through that and his skin looks ok and we even made it home for dinner. I'm tired. The labs (cbcs and stuff) are about the same and we will know vntrs and maybe the fish test to see male vs. female cells to see how strong the donor cells just might be and hopefully by then I will have some anxiety relief and we will have good numbers so until then please pray for that. The antibody test is still not back. Please pray simon beats this cold and it doesn't get worse and that his skin stays clear along with awesome vntrs of all donor cells. We so appreciate the prayers and we know you are doing them with your hearts and love so thank you. Update you when the info comes to us. God Bless

Well we have waited out almost 2 weeks to get to clinic on Monday and thats been pretty tough. I'm praying the numbers are way up of donor cells in every area on Monday and that the ivig Simon receives causes him no harm. We will have a long day at the hospital due to ivig and then he needs to get his g-tube changed out after that. He has had some signs of being very tired and some of his stooling is much looser indicating to me that something is going on, just not sure what. Marriana has a summer cold and just today Isabel and Simon are both stuffed up with runny noses and isabel is complaining of stomach aches. Simons appetitie has decreased but I am trying to give that the old "hes a two year old" talk and he has a stubborness that I can't seem to break. He eats when he wants and what he wants. I am adding a little extra pedisure for fluids and calories. I hope he has not lost weight.

So tonight we were blessed with a very special visit from Antionette and her mom Camille. Antionette is a 9 year old daughter of a friend of mine who has blown me away the last few weeks. She decided she wanted to do something for Simon and drew, colored and painted pictures and then taped them all over her house and told her mom to invite family and friends over to buy them so she could give something herself to Simon. Wow! What an amazing little girl to think so much of one little boy. Well tonight her and her mom came over with princess coloring packets for the girls and a motorized car (that was antionette's and they wanted someone special who would love it to have it) for Simon which he took to right away. He also loved Antionette from the second she walked in the door. The girls warmed up quick to her too as she kept asking them for hugs. She is a very loving, happy little girl who you could tell just loves kids. She was happy to hug and love up all three of our kids and it was a sight to see and bring tears to your eyes. Simon couldn't get enough of her laughing and hugging him. He is such a little flirt. She also brought a very touching, loving letter, and the money she raised from her artwork. Thank you so much for the warmth and love you brought into our home tonight. We feel so blessed to have such amazing people in our lives helping to make it all seem so "normal" and uplifting. Check out the photos Simon is loving the car and Antionette. {Please pray as we enter a new week that our numbers are up and stay up, that we stay infection free and that we can get through ivig without any skin reacations. Please keep Jacob in your prayers for healing and a break from the rough road he has been on and his parents, and for Connor and his family as they just begin this journey. God Bless. Tracy and David