February 2007 Archives

I hope everyone is warm in their houses tonight. Whats with that ground hog anyway. We took advantage of the wintery weather and stayed in and had a pj day. It felt nice to hang out with all of us and not have either Dave or myself running errands alone. We had things we needed to do but....our laziness got the best of us today. Dave starts at 4 am tomorrow so he is fast asleep. We have had some issues with Simons skin come up in the last few days and the last 24 hours it has really worsened. I sent digital photos to the doctors tonight (thank you Tammy and Rick for borrowing us the digital), hoping when they view them in the morning they can tell me what is going on. Basically the rash Simon has had for months now that we can't get to go away and noone knows what it is or why, has gotton 5 times worse in the last 2 days. Simon has welt like areas that are purplish in the center that are now hurting him. If you rub lotion on them he cries. This upsets me alot b/c this has landed us back in the hospital more than once. Simon still is running around and being his crazy self. Hes such a goof and you have to just grab him and say "give me a hug" and he squeezes you saying "tight" and then says "down" so he can continue on, you gotta love it. Anyway, please pray tonight, tomorrow, always that this is a very temporary thing, that it will go away quickly, for good this time, and maybe we can find some answers as to "what? Why?" soon. Please keep Simons immune system in your prayers that he continue to be at 99% marrs cells and he remain strong and in the healing process, boy its going to be a long one. He is still eating some, but throwing up at least once a day complete with major gagging, I keep thinking its going to get better, it has to. Well on the good news side, Tommy went home from the hospital today so lets pray he stays there this time. Lots of Love Tracy and David

OUR BENEFIT FRIDAY NIGHT AT TEASERS WAS A GREAT SUCCESS. We want to thank everyone who came out and supported our family and our little Simon. We are so thankful for all of you and for the love we felt. So much effort was put into this benefit and it really showed with all the little details. The raffles, the split the pots and the food. Our special thanks go out to Sue, Camille, Tina, Pam, Marge, Cathy, Jean, Mary, Donna, Teasers for donating a portion of their sales to us, Camille’s husband and their family for donating the sports memorabilia and helping with things at the benefit, Dinos Pizza for the yummy Pizzas, Mr. & Mrs. Greco and Sandra for taking care of the door and (benefiting from that with the ladies, ha ha - you know who you are Mr. G), Maryann and Gabby for the accounting work, Meghan and her friends from DePaul who sold raffle tickets for their community service hours and the many others who may have been behind the scenes doing things and helping out. There were a lot of people there who are long time friends, co-workers, new friends, strangers, and even Jacob Browns aunt Bethany came out in support of our NEMO boys with a group of her friends. The crowd was amazing and we had a great time. We hope everyone who came had a wonderful time. It seemed to be a perfect evening. Thank you for making the trip to Teasers and for taking part in this event for our son. Simon will always know what love and prayers went into his life early on. Everything that people have done and are doing will be journaled for him to always have and be able to read. Once he gets past some of this immune system stuff and we can move on to the other issues he will face I will continue to document things for him. He can look back and always feel the love. Our special thanks go out to Sandy and Kelly for holding down the fort with Simon, Isabel and Marriana so Dave and I both could attend the benefit and really enjoy it.

A Son needs a mom to teach him that sometimes the battle is within;
To make sure that faith is the light that guides him.
To tell him that anything is possible if done for the right reasons.
To tell him that remaining faithful is his promise and obligation.

We need our son to teach us that life is about more than what you can obtain.
That being there for those you love is most important.
To assure us that even in the worst of times, try to find the hope - the smile and laughter that has brought us through.

We are so thankful for Simon and all that he continues to teach us. Our world and I believe the world of many others has been affected by Simon. Dave and I continue to be overwhelmed by everyone’s love and generosity. Thank you so very much.

We went to clinic today. Labs came back pretty good. His White count, Hemoglobin, Platelets are all growing and holding strong. We are very happy about this. I am waiting for his IGG level and will see if any changes need to be made. Simon is eating a little more and is a crazy machine but his skin has flared up on his arms and legs. It just doesn’t seem to want to go away. We used to have periods of clear skin, we have not had that in a while now and I can’t help but wonder why, especially with him being 99% donor cells. We continue to ask for prayers that his VNTRS stay strong and stable at 99% or better (these will not get drawn again until day 100 which falls on March 7th) and that he continues to eat his little bits and that his appetite and ability increase for food consumption. We also ask for prayers that his skin starts to clear up and he can be without pink bumps very soon in the future. God Bless you all. “To believe in a miracle is only a way of saying that God is free - Free to Do a new Thing. May God be able to move on and bring a miracle into someone else’s family. Thank God for our Miracle -We Believe!
Love Tracy and David

Well today turns out to be a double bonus day. I took Simon to the neuro surgeon and he told me Simons skull fracture feels as it is healing okay. We will still need to keep an eye on it the next few months (+) and make sure he does not get a soft spot there which would indicate that the membrane covering the brain, which lyes between the skull and the brain, has not gotten between the fusing skull bone. He thinks this is very unlikely to happen so that is good. We are still waiting to hear from the hospital regarding the whole accident, not even one rep from the hospital has called us to this day. Its appalling. Our second set of excellent news is that Simons engraftment is holding steady at 99%. This has me elated. I am so thankful for all the prayers that have helped us to achieve this and cannot thank everyone enough for sticking by us through this. Please keep praying.

Simons rash has reappeared. It is showing up on his back and now on his face, which are places he has never had it before so I have a e mail into derm. I stopped by GI today to have Simon weighed and will wait to hear from them as to how to proceed to bulk this boy up. Today he has had 8 oz of formula and a few bites of cheese. Its by far the hardest thing for me right now.

So that is it. We are joyous today and thankful. Yesterday we were able to enjoy the snow and actually ventured out to the snow hill at the park and watched the girls go down numerous times. Since it was cold we did not stay long but it was a breath of fresh air to be outside and not stuck in the house. Simon loved his new sled I got him a few weeks ago and Dave even took him down the big hill once. It was not a complete success as Simon felt the snow in his face and lost his mitten which caused him to have a serious crying fit which made me think he broke his hand. All ended well with hot chocolate back at home. Enjoy the day/week. Lots of Love Tracy and David

Well even though the Bears let us down Simons labs held steady. Today was relatively quick and painless. We went for the swallow study which Simon decided not to cooperate with and drank very little and ate, nothing. So after several jokes I said well folks sorry to have wasted your time. We went from there to stem cell for labs, vntrs and pentamadine (to prevent pneunomina). It was quick and we were out the door after a visit with Dr. Jacobsohn and the girls who Simon adores. His labs are holding steady. Really no improvement but they are stable so that is okay. I expected them to at least be up a little since we have not had labs in almost 3 weeks, but they tell me they are ok. So we will find out where the vntrs stand on Wednesday. Simons weight remains around the same. Sometimes a little less. He has taken in nothing today. If he would just eat like he does on the days he does eat we could get past 20 pounds. So I hope that surging forward will get us past some of this. We are at day +70 today. I'm hoping some of this will start to improve. We have bumped up his calories in the formula and are adding supplement fat to it as well to try and get him heavier, so far that is not working. I will let everyone know when I get the vntrs back so pray for 99-100% marriana (donor) cells and for Simon to start wanting food.

We hope to see everyone at the benefit on the 16th. If you need info. for that I will repost it next week or look at the back updates it should be on there too. Thanks for the prayers, please continue to keep Simon in them everyday so we can get past all of this. God Bless. Go Bears, next year. Keep the Faith. Tracy and David