January 2007 Archives

Hello to everyone. I wanted to update everyone on Simon. He is a very tired boy today. We were awakened last night with projectile vomitting at 2 am. I'm not sure if I let the feeds run a bit too long last night and a bit too high a level of mls because he has been tolerating the increase for 4 days now and I think I might have overspent my limit. He did not take in much at all yesterday so I thought if he got an extra hour of night feeds that would be good. I was wrong and I am sorry to have put us all through it. It was painful to see him doing this and it brought back way too many memories of our last transplant and the 9 months it took me to make the vomitting and actual interest in food work. This is my biggest challenge as I have said in past updates and I will continue to work on it, it does not go without alot of frustration and disappointment. We are scheduling a swallow study to make sure all is going down properly and will take it from there.

Dave went back to work today. It has left us both a little sad and scared with me having to deal with all of the kids needs and wants, meds to give and care for Simon and work to accomplish for my job. I am fortunate today to have Daves mom here with me. It feels so good when she is here. But my internet connection at my office is down so I cannot even get the stuff done. So I am doing paperwork and updating here.

I have to say, through all of this Simon never seems to let it get him down. He throws up and 5 minutes later as we sit smelling like bad formula he is asking me to read him clifford in the dark. He is running around today and throwing his ball and not feeling affected by any of it. He is truly amazing as all the NEMO boys have proven to be. We ask for continued prayers that our engraftment stays very strong and steady, we go without infection, especially in the G-tube and please pray he starts to take in more calories so we can hope to be rid of the g-tube and the feeds and move onto alot of little bites all day long. Thank you all for your prayers and support. We still need all of you for this long haul. Being home is nice but we are on a long journey of many issues. God Bless you all. Love Tracy and David

Today started up the series of therapy sessions that Simon had before he went in for transplant with our nutritionist coming out to the house. After a long visit which I was grateful for we have a plan. Its a pretty drastic plan to try and get Simon more off the g-tube feeds an onto drinking and eating on his own. We have been experiencing alot of vomitting again lately and absolutely no appetite for food. Its always such a struggle. So we will give this new plan a few days and I will see her and speech therapy next week. I also need to start up physical therapy again too. With David returnign to work Monday it will be an adjustment period for me and I will have to figure out how to get the girls to preschool 3 times a week without actually going into the school with Simon. I am praying this works with the feeds and he will start to be more interested in food. It honestly is my daily chore to get him to eat even a few bites of food. He is maintaining weight but we need him to gain and grow. So with no visit to stem cell until the 5th of February we pray all stays stable and Simon rocks with his counts and vntrs stay the same and his nutrition improves. Please pray for that for us. God Bless you all. Keep up with us we have a long road to haul. Thanks. Tracy and David

Today has been a very good day. Dave took Simon to clinic and we were happy to hear his white count has almost doubled, his hemoglobin is up and his platelets (which are the last to come in) are going strong. We were at 99% donor cells last checked so we assume that to still be the case. We pray and ask you all to pray everyday for this to be the beginning of a long stay of good health and progress for Simon. His skin has pretty much cleared. His g-tube site infection cleared up on its own with just some granulation tissue forming around it that we will use steroid cream for and they do not want to see us for 2 weeks now. That is scary but such a milestone for us. WE have been going to clinic once to twice a week since last April so getting a week off is much welcomed. We are very happy today with the way things seem to be headed.

Yesterday I had a bad day with feeling the affects on me not being able to get him to eat much. As a mom that is a hard thing to deal with. Most of his nutrition comes from night feeds through the g-tube and he has alot of diarrhea which keeps him from maintaining any weight gain. Still he manages to keep the weight steady at just over 20 pounds. I spend a good portion of my day trying to get him to nibble on things here and there and take bottles so that battle goes on. I long for the day I am buying more food because our little boy is packing it away.

Well that is all from us here. Enjoy the weekend, the Bears Game which they will win, and thank you for keeping our family in your prayers and please keep doing and asking and praying because its helping and working and we so appreciate it. We believe in the power of prayer and God believes in Simon so onward we march. Thank you for all of your support. Our love David and Tracy I'm working on the photos, I have some cute ones.

YEAH BEARS!!!!!!!! (sorry Dr. Duerst) Dave needs tickets to sundays game, anyone????? haha. Hello everyone sorry I have not posted I have been trying to get some new photos loaded and am having issues. I wanted to show you all how handsome Simon is looking with his bald head but the photos won't post so (check back in a couple of days and I should have it worked out).....onto the medical aspect of things. Simon actually just walked in the office with the biggest smile on his face carrying Isabels glo bear and wand (the girls are at school so he has free run of their room even though it says "No boys allowed, girls only", ha ha). He is doing pretty well. His skin is a calming down a little bit. His g-tube site flarred up over the weekend and we had to put a call into Dr. Duerst. We have been trying to treat it topically b/c the drug we use for this issue suppresses his bone marrow and we are having a bit of an issue with the white cells coming back up so.....it seems to be holding its own and I am hoping that with the other areas of the skin calming down his white cells can focus on the g-tube and put us in good shape. We have all been battling a cold/cough/upper respiratory thing and no matter how hard we tried it seems Simon has caught a bit of a cough so we pray that does not go any further. Its so hard to try and stay apart and now especially with all of us having it. Not sure who we should have sent where but we chose to all stay home togehter and we might be paying the price. We'll see. Simon seems to soldier on no matter what. I feel guility sometimes because I know other NEMO families are taking such great precautions and I wonder if because we have been going through this transplant cycle for over a year now if we have difused ourselves to some of that and know we are going to have infections and issues to deal with no matter how hard we try to keep everything clean, sterile and safe. We do our best and I have to be okay with that I guess.

My sister and Daves brother are improving, thank God. We are all hoping to get healthy so we can have a big family hoopla. I have to send BIG kudos out to my nephew Kyle. He took first place overall at his gymnastic meet in Michigan and his team took first. They could not have done that without Kyle. Great job!!!!!

Enjoy the day and please keep the prayers coming they are working. Simon is so happy and we are just anxious for the days when we can be with other people and enjoy our families, friends and lives. God Bless everyone.

Just a quick update to say vntrs are holding steady at 99%. YEAH!!!! thanks for all the prayers and favors called in to the big guy. The girls and I are all sick and trying our best to keep away from Simon but he gets really mad when we lock him in the family room and go in the front of the house or upstairs. Dave and I are always in a different part of the house with a different set of kids. I"m hoping that is enough to keep Simon safe. His wbc is still low and hoping by stopping the antibiotic we will see a rise in those counts tomorrow. I pray for that. His skin still is red and bumpy, no expanation for that. So thats it here, keep praying for things to improve and Si to be on his way to a new healthy functioning system. I pray thats the case by spring. We are so cooped up and I don't know how to manage it all when Dave ventures back to work in a week. We'll have to see. His brother is improving and my sister has now come down with pneuonmia. Its scaring all of us alot and we have to ask "why and when is it going to stop" so say an extra prayer for my sister who, like many of us women, still thinks she can do it all even though shes sick. Stay in bed Denise (I love ya). So keep praying for all concerned and ask for things to improve and give us a sense of relief. God Bless Love Tracy and David

Well our little Simon continues to be full of life and love and a wild man running all over the house trying to keep up with the girls while he battles his skin issues. I'd like to say his skin looks great and things are improving but it seems we get rid of one skin infection and we are just waiting for the next one to begin. Simon has had little red bumps all over him again now. I'm afraid they might be the same viral infection coming back. I just don't know what to do about it. Dave had him in clinic today for iv infusion of pentamadine which he gets monthly to prevent pneumonia and they decided to stop his antibiotic that hes been on a week mostly due to the fact that simons white blood cells are less than 1.0. As a matter of fact all of his cell counts are in the toilet and it has left me with more anxiety, fear and irritability today that I can manage. The team seems to think the antibiotic has something to do with it but I honestly am afraid that he is losing the cells. They did the vntrs today and we should know tomorrow if we still stand at 99% donor cells. Please pray that they are and this is just Simons cells trying to recover from his skin. He is such an amazing, funny, smart, loving boy. He had a good day of eating today and his weight was up a little with his weekly weigh in so I pray we can start to see that weekly. I'm nervous. I have talked to both of the other families going through transplant and its not without its problems but I have to tell you for any family who goes through transplant with an immune deficiency its a long process and you don't breath easy for the first at least 3 years out of transplant. At any time you can lose the engraftment. Its a hard way to live and a hard thing to really try to incorporate into your family.

A friend of mine said "You are doing great and seem to really deal well with it. Or your pretending really good." You take the days and try to pretend its all ok. The days you actually go on like nothing is wrong in your family and you almost feel guilty about it because you know your partner is home because you can't take your son with you. That you will be on the "watch" for issues for a long time to come still. We have a lot of illness in our family right now, serious stuff and I have to say with the new year I was really ready to put the bad behind us and start to see the good. I so need to see the good. We ask for the miracle of a new working immune system for Simon and for Tom. Its a hard thing to deal with two serious illness at once that affect you so deeply.

I hope everyone values the health they have in family. Its something you cannot buy or acquire but you can choose to try and be healthier and do things for yourself. I vow to do that, as soon as we get our son healthier. Enjoy the everyday, as I always say. Please pray for progress. Pray for these boys to be well and be able to share their joyous personalities with everyone. Its hard to know people are missing out on Simons beautiful mountains of knowledge he awards us with every day. God Bless. Tracy and David

I've been getting razzed a little for not posting anything and everyone assumes no news is good news, which is pretty true. We did have to make an unexpected trip to clinic the other day because Simons g-tube was looking infected and we wanted to catch it before it ended us back in the hospital. So Simon adds another med to his already long list of daily swallows. He is on a 14 day antibiotic to keep the g-tube from getting worse and so far all looks good. His skin is clearing but two weird things have popped up this weekend and as always we are concerned. I'm telling ya if we could get past the skin we might be ok. He is getting little red dots now on his arms and his hands are forming thick almost scarring on or around his knuckles. HOpefully its just the skin replacing itself. We have been hanging at home alot. Its getting hard to be in the house but I take it over the alternative any day. Dave is spending alot of time at Northwestern with his brother who is in the ICU there and sedated. They are hoping to bring him out of it tomorrow so pray hard for him tonight.

Simon continues to be a joy and he and the girls are really interacting. They were doing the dance moves together today and it was such a joy to see the smiles on their faces. Simon is walking all over the place and really pooping himself out. He even ate today so that always makes a mom smile. Keep praying for continued improvement. Tuesday is clinic and vntrs will be drawn. Pray Marrs cell continue to dominate at 99% or better.

God Bless you all and thanks for checking in on us and helping us through all of this. We are so thankful. Love Tracy and David

Happy New Year everyone. Hope all celebrated safely and are excited about the new year. We are very glad to have 2006 behind us and very hopeful 2007 will be a much better, healthier year all around.

We had a trip to clinic today, which was pretty uneventful (which is how I like them. I'd rather feel like a social call than an appointment). Simon had his picc line removed today. It was sorda coming out and looked icky and not really drawing any blood for us so instead of leaving it in they yanked it today. He still has his venus port for iv meds and blood draws. They told us today they think he can just come once a week. Wow. Seems too soon but okay, cut the cord and lets see how it goes. His counts are about the same. No big increase in anything and we will do vntrs next week to make sure Marrs cells are still 99% and going strong. Simons skull fracture is about the same. We hope it is healing inside but on the outside you can still see the bone. It appears some of the swelling has gone down but the prominence is still obvious. We have a follow up scheduled for Feb, so hopefully that will resolve itself. A CT scan will definately be encouraged again.

I guess the hardest part about all of this right now is that we really cannot be around alot of people and after such a long, hard year we would like to be able to attend parties and events as a family. That will be a long way off as Simons immune system needs at least a year to be functioning. That doesn't mean we can't see family but we cannot be around alot of people and NOONE who is sick. I can't take him on errands with me and so we hope and pray that things just continue to improve and this sacrafice will be over before we know it and we can all hang out places together.

Well, again thanks for the love and support, without it we would be lost. God Bless you all. Love David and Tracy