May 2007 Archives

Celebrate today with us as it marks our six month post transplant on our calendar. We are very blessed to say we have managed to stay home, be together, watch Simons immune system heal and hopefully start to stabalize and stay strong and steady going forward for all the long days of his happy lifetime. It has been a busy day of meeting with all Simons therapists and social worker and we are able to cut back on some therapies and only see them once a month which will help my schedule out a bit. The girls are coloring, I am working and I just wanted to ask all of you to pray to God that Simons numbers are strong, high donor cells tomorrow and that all his other labs look great including igg and cyclosporine levels. I also wanted to say a prayer for a friend we lost on Sunday to lukemia. My girlfriend left this world and will hopefully be feeling peace and no more pain. Please pray for her husband and two children that she has left for all of us to embrace. I cannot imagine my children not having me to keep things going. I know he will do a good job and has for a while now but we will miss you my friend. God Bless you all. Tracy

Celebrate today with us as it marks our six month post transplant on our calendar. We are very blessed to say we have managed to stay home, be together, watch Simons immune system heal and hopefully start to stabalize and stay strong and steady going forward for all the long days of his happy lifetime. It has been a busy day of meeting with all Simons therapists and social worker and we are able to cut back on some therapies and only see them once a month which will help my schedule out a bit. The girls are coloring, I am working and I just wanted to ask all of you to pray to God that Simons numbers are strong, high donor cells tomorrow and that all his other labs look great including igg and cyclosporine levels. I also wanted to say a prayer for a friend we lost on Sunday to lukemia. My girlfriend left this world and will hopefully be feeling peace and no more pain. Please pray for her husband and two children that she has left for all of us to embrace. I cannot imagine my children not having me to keep things going. I know he will do a good job and has for a while now but we will miss you my friend. God Bless you all. Tracy

I cannot explain the feelings I have with Simon on a daily basis. Most of them are so good. We have the many days of worry but to be blessed to spend every day with him is amazing. He is talking so much and engaging in conversation with all of us. He goes and plays by himself and harrases his sisters to no end and when I walk into the room and he has his sisters doll on the floor and he looks up at me at says "mom playing with baby alive; marnanna (thats what he calls mar) change her" my heart melts and a smile fills me that can last the day. He truly has come so far. After spending 7 months last year in the hospital he has overcome his delays and is doing so well. He is being evaluated by all his services and speech has said he is speaking at a 2 1/2 year old level and she doesn't see any delay at all. We meet with all services next wednesday to see what the next steps will be. One of my biggest challenges these days is to try and figure out what to do when its going to be 89 degrees out today and our son cannot be in the heat as he does not sweat (this will bring up a big ordeal once school starts for him) and he cannot be placed in a pool or run through a sprinkler because we are not sure if the water he ingested would make him sick (I still boil all our water) and I have 2 five year olds who want to go to the pool. What do I do?

We have joined the NFED (National Foundation for Ectodermal Dysplasia - NFED.org) and so we get the newsletter and everytime I receive it I look at it, I read it and I get really sad. I don't know why it has this affect on me because a huge majority of the kids and teenagers are awesome kids who do a great job even though they are not the same as all the other kids they are around. I think about the awareness and how there really isn't any in our area. That we know of no other child and noone around here even knows of Simons ED. It is the disease that is situated in the background just waiting to be attended to but first we have to have an immune system that works. Then we have to work on the ED. I've been told by other NEMO families and even doctors "the ED is not a big deal. He can have dental work (but at what cost financially and emotionally) and we can deal with the fact that he can't sweat (noone sees my 21 month old walk up to my patio door on hot days with a beat red face after 10 minutes, turn to me and say "mama inside too hot". It is heartbreaking when you think he cannot be out having a hot summer day fun day without feeling so uncomfortable that even the fan spray bottle that you use constantly makes him feel any better. To me the ED is a big deal and it makes me wonder how will he really deal with it all as he gets older. This also affects his digestion and eating. These things will never go away. I strongly feel that this rests on myself and Dave. We have to give him the tools he needs to think its not a big deal and that he is like everyone else. That in itself is a full time job emotionally. I sit and wonder how to do that. Noone wants to be different, noone wants to have a child hurt because they are different and so the parent, really soaks up alot of the sadness and fear and encourages their son to surge forward and be the person perhaps they wish they could be. Maybe its not fair to that child but it is what will make that child better able to deal with a cruel society that does not completely accept one if they are not the same as all the others. So this is what keeps me up, along with night feeds and a son who has alot of red bumps right now that are bothersome to him and itchy. The fact that maybe from the immune suppressant being upped he has lost his appetitie, stated to vomit and is a bit testy with his sisters also play into the mix of my late night typing. At any rate I plan to have an awesome weekend with my kids. We are flying solo and missing daddy quite a bit but will reunite soon. My biggest challenge will be to keep them all entertained and busy so they fall exhausted every night and I get some peace. Please pray for Simons donor cells to be strong, high in number and stable for the rest of his long, healthy life and for his skin to calm down. I thought it was from starting him on whole milk (as I've had to wait on this until now) but I"ve stopped it the last two days and no change. I'll just enjoy my sons abliity to repeat every single word that comes out of my mouth and the joy I get seeing the girls and him play and have a good, crazy time. To all of you God Bless and enjoy the long weekend. Tracy (and David) PS Kevin and Dawn I cannot get on your web site to write you but your family is always in our thoughts Love to all of you and Rhys especially

Well vntrs are back and they are down a bit. Actually week after week we have been experienceing a 1% decline in cells but we kept saying they are about the same. This week even though the overall is 94% (the 3 other cells tested are down below that) which may sound good/fine to all reading this it is concerning for us. We have been in a battle to maintain donor cells for well over a year now between two transplants and last summer all we did was worry about dropping donor cells. This summer our donor cell count is much higher but let me tell you the worry feels the same. We monitor 4 cells overall. They all are down and up and down. Its concerning that we cannot keep them stable and this week his cyclosporine (immune suppresant) is very low so we are not sure why he is not absorbing it. I had a lenghtly conversation/e-mail with our new immunologist and while we think we understand the disease process of NEMO it is not cut and dry and so much is to be learned. I was told today that Simons exposure to alot of people should be limited while he is on the immune suppresant and since that is what is keeping our donor cells here, it could be for a while. I am very saddened by all of this as I really felt we would be able to be a little more "normal" this summer and enjoy things a bit but after my conversations with our immunologist I do not feel safe for now to do that. I am getting a bit of mixed instruction as not all feel the same about what we can and cannot do. I was also told my girls should not get live virus while simon is on immune suppressant so that is another worry that the girls can't get their immunizations now. I am upping the immune suppressant tonight for the next week or so to hopefully stabalize the numbers and bring them up again. I ask that all of you continue to pray for Simon to have complete healing of at least 95% donor cells that stabalize and stick to it and that no infections enter his body to add to all of this confusion. We are not doing ivig for now. He may be producing a small amount on his own, but his own is not really up to par in fighting infection. The worry is that the rash he could get from ivig could be as bad as a burn victim and could be far worse than an infection he may catch and be treatable by antibiotic. Please pray for him to stay strong and healthy and for us to stay strong. Thank you and pass the prayer along. Love Tracy and David

Just a quick note. We went to clinic today and drew labs. His chemistry seems fine. We wait on igg and vntrs as always. Simon has developed this large lesion on his buttocks and I am hoping it resolves in the next day or so. I am not kidding you when I say that it seems like Simons skin does okay and the day we go into clinic it seems to flare up with something. I think its the lighting there. They drew extra labs today to see if some levels we never test are high and it could point to his skin being incontengi pigmenti (IP) which has been discussed before, I had it as an toddler and hopefully it will get better as time goes on. He does have the brown pigment left on the skin from many of the episodes which is very characteristic of it.

It is such a challenge to get the girls to school and then downtown by 9:30 that I cannot wait for the girls to be out. A few more weeks and we are home free for summer. We will be attending the Immune Deficiency Foundation conference in St. Louis end of June and will be able to meet two of our other NEMO families which we talk to quite a bit so we are very excited and pray Simon is well enough and strong enough to make the trip as Dr. Orange is speaking on behalf of NEMO and we are excited for him to meet Simon.

I will keep you posted on vntrs and igg and if we are to do ivig which I am pushing. I'm trying to get him on milk and off the formula and hoping these skin bumps are not related to that. Anyway, we don't go back until next Thursday due to the holiday so pray all goes well with numbers and no infections. I'll keep you posted on this weeks when I get them. Enjoy the week and the holiday weekend. Tracy and David

Well vntrs remain pretty stable. The machine was not working properly so we had to wait an extra day but I got word they are 95% overall, around the same. We are still wondering what to do about his GI issues as he does continue to vomit once a day. I met with my nutritionist and speech therapist today and they basically told me to try and give him at least a fruit or veggie with every snak/meal beacause since I'm such a calorie freak I seem to lean towards the all fat meals, which Simon loves by the way, and it takes longer to process. So I think I will try that before starting him on erothymicin (SP?) as I hate to add another antibiotic due to diarrhea, which we have enough of, and side affects to the cyclosporine. I am so thankful to have Kim our nurse practitioner who guides me very well along the way and helps me with my doubts and fears, thank Kim.

Anyway I was out tonight with my girlfriends to hear some Jazz music, which was very good but very loud so we opted to visit the quiet venue next door and I had a nice time laughing about silliness but also speaking of things that are dear to my heart and others. It is always a welcome relief to know friends are there, care and want you to feel normal yet not alone. I came home only to find that Simon had vomitted enough that the smell still filled the room and I immediately knew when I walked in. Its a sombering feeling knowing if you stayed home it could have been prevented because Simon, when upset, cries and pukes. So tomorrow is another day and I will do my best to get food in him and to hope it will stay, process and feed his energy and his donor cells to be strong. IVIG is a concern as we are down to 500, I will be pressing the issues next week as below that scares the "***" (sorry) out of me. God Bless you all and do me a favor, no matter how much you think a person in need may require space, make the effort to reach out if by card, e mail, starbucks gift card, call when you knwo they are not home, but call and tell them you don't know what to say, but you care so much. It means the world to the receiving person. God Bless you all. I am asking for special prayers for Tom and Jacob. They need all of you to pray for healing. Thank you. Love Tracy and David.

Well we've had a couple of pretty decent days. Simon has been a wild child and we have been getting out a little and seeing some friends and family. Its always with alot of caution and fear that we do that but if I can tell you how much Simon opens up and thrives in these situations and turns on the charm and character you would have to ask yourself how can you not allow him to be with his family. He loves to interact with everyone and will recite their names to you for days after seeing them. He is so cute with so much these days along with of course being a pistol of fire and stubborn attitude. We have been dealing with for a very long time daily vomitting. We have been discussing with our GI doctors the fact that we do not think Simon empties his stomach or digests things in a timely manner and we were set to put him on a new medicine that would help him to get his stomach to kick into mobilizing some of that food and turning it into fat or weight or something but the medicine will not mix well with one he is already on. I was almost excited to start it in the hope that it would help the vomitting to stop and for him to be able to keep his food down so we are trying to work it out and will discuss it more at clinic on Monday. Its heartbreaking to watch him as he really is enjoying his food these days, asking for things, opening my pantry and pointing to foods "mama cheetos" as he looks back with his big eyes of hope that he will get some and then only hours later to watch it all, from the morning meal, come back up with great force in the same form it went down. So pray that along with great high donor numbers, high igg numbers that we get something that starts to help this issue. We also are being revisited with red bumpy skin that so far has not gotton the dark centers and has not blistered but it doesn't look nice and it is itching Simon, so pray hard that the skin does not get any worse, only better.

Tomorrow is a day I plan to soak up all my familys love and devotion and relax and watch all that goes on while Dave takes on my job. The girls are excited as they have told me they will be serving me breakfast in bed and then the have "something" for me. They cannot keep a secret. Afterwards we will be heading to my mother in laws for lunch with the family. Again, as good as it feels to be with them all, my fear is always near and I always question if I am doing the right thing by allowing Simon to be around anyone. In two weeks we will be 6 months out of transplant, we pray it only continues to get better and Simon triumphs in the same form that his spirit rises to the occasion every single day that he has dealt with this. So, enjoy your day moms. Happy MOthers Day and God Bless. Say additional prayers for Jacob that he may be relieved of his GI issues and start towards recovery in that area. God Bless you JT. Love Tracy and David

Today my brother in law Tom and his daughter saw Simon for the first time in maybe 8 months. Since we have been so cautious about Simon and who he sees and where and Tom has had his health battles for the last 6 months it has been way too long that we all have been apart so it was a nice surprise to walk into my mother in laws house today to see the two of them sitting there with my kids. A long overdue reunion. Tom said I can't believe how good he looks, but I always have thought he looked good when I've seen him. Thats the thing everyone always says about Simon, they cannot believe how good he looks. In his short time here he has been through more than any of us might encounter in a lifetime and his spirit and drive just keep him keeping on as he wakes up and puts a smile on his face and just lives life. I think I still need to learn how to do that from him. Today we were blessed to receive VNTRs, which are continuing to go up and were at 96% this week. We are so happy and so blessed and thank you all for praying and helping our miracle to work. His igg level is holding somewhat at 532 this week and we are holding off ivig another week. I keep praying it will start producing itself. I am in no hurry to taper cyclosporine as it is helping the donor cells to grow and if it takes until Simons body outgrows the dose he is getting and his cells finally give in to Marrians and lets her prevail then that is what we will do. So there you have it. We are basking in this news of today and hoping that by tomorrow Simons cold starts to leave along with the horrid cough he wakes up with everyday. Pray for that and all of you moms enjoy your mothers day weekend. Remember you are the GLUE of the family and know you work so hard to make everyones life work and feel loved so allow yourself the love and caring to be for you. God Bless. Love Tracy and David

Well I have just not had it in me to post anything lately. Simon is doing better but still having alot of congestion and gagging due to the mucus draining down his throat and seems to throw up one good one every night, which includes his whole dinner and a bottle. Tonight we escaped that by not letting him have a very big bottle before bed and he didn't eat a whole bunch at dinner, per his appetite. Our visit to clinic was way longer than it needed to be today and I was irritated when I left not for any good reason but for several small things and just not wanting to spend the morning sitting there when I didn't need to. Anyway, Simons spirit is his usual happy self and he is giving the girls a run for their money. Right now we are trying to teach we do not pinch. Not a good thing for an almost two year old with a stubborn side. He amuses himself nicely when he is not allowed to play with polly pockets and his sisters but lets them no he is not happy about it. His counts were good today and we will see where our igg and vntrs stand maybe tomorrow. I pray they are both high up in the heavens of healing and strengthening. So thats all I have in me, I'm exhausted. Simon seems to keep waking at 2 am and not wanting to go back to bed unless we bring him in bed with us, its not been easy and sleep is not something I have ever. I'll write tomorrow after our counts come back. As always pray for the numbers to be high of donor and igg to be up as the IVIG is still an issue and the docs still don't want to give it to him. Its a dicey area we are trodding. God Bless Love Tracy and Dave

Well we seem to have a virus going on with Simon. The last few nights have been rough and he is extremely congested and it makes it hard for him to sleep. He is not eating or drinking and is vomitting when he does get feeds so we have been giving him pedialite via g tube which stays down for the most part. The docs think its a virus that he will have to wait out. That would be fine except for the fact that they are holding the IVIG and that makes me very nervous since he has no working immune system to take care of infections and the IVIG is suppose to help with that. We go back monday for labs and I will seriously discuss ivig then. We think he needs it and they will have to try another type to see if that helps with the rash. We can pray that he starts to make igg on his own and that his igg and his vntrs next week are amazing and that he is feeling much better. Please pray that he kicks this and starts to eat and drink and keep it down again by tomorrow. Thanks for the continued prayers. God Bless Tracy and Dave

Just a quick post to say vntrs came back about the same. We are watching 3 different sets of cells and they all seem to be switching every week which one is in the lead, this week t cells are up and myloids down so overall its about the same. His donor vs himself came back 97% donor 3% him, so we need to get those 3% out of there. Simon is suffering today, flu like symptoms and really aching. Its breaking my heart. I am praying its a 24 hour thing since we had pentamadine yesterday no rash but fever and vomitting today. He also has had alot more vomitting and gagging since the cyclosporine has been raised and I know that is the culprit. Hoping soon we can decrease it a bit. The heat didn't help any. We are in for a hard summer especially since i have the girls who want to be outside and in the water and Simon who can't really tolerate the heat and at this point cannot be in a pool so .... its going to be very hard. I pray tonight is not as bad as I'm anticipating since simons stomach is really bothering him. His igg is dropping and we need to address what to do as we are going into a scary zone with his level and Dave and I are not comfortable with it. So thats it, please pray this is a 24 hour thing and tomorrow brings a happier, feeling better simon. Please continue to pray for 99% donor cells to return and stay and for no infections or illness. God Bless, Pam and Ken we are praying. take care, Tracy and David.