Cure 4 Simon

2008-11-18T20:35:50Z

Well as I type simon is screaming out at the top of his lungs Christmas songs. Isabel loves 93.7 who play x-mas music from now, all day, until Christmas so Simon is bellowing to them as I type (he should be napping). Things here have been less than eventful. We all have traded a stomach virus (except for the one person in our house who did not get the flu shot - Daddy) that knocked Isabel out of commission for a week and now she may have passed it to Simon. She went back to school today for the first time. Simons stooling has increased two fold. He is down another 3 pounds and I am at a loss as to what to do. I made a plead with all involved to help in some way but to me it feels like it is falling upon deaf ears. I think it is time to move on and search for answers elsewhere. Everyone focuses too much on simons NEMO and how its affected other parts of him instead of looking at him a whole person. I consistently hear that these things occur b/c he still has bad NEMO in his gut, perhaps so but we can make it better somehow. I begged for allergy testing and received some but still am not sure, having the numbers in front of me, what they mean. Still waiting to hear that. I have written to his docs and asked specific info on the transplant and what to do now since we are approaching his 1 year post transplant number two. I need to know how well it is functioning and how long we will have to continue profolactic iv drugs. One of my main concerns is that somewhere in what he eats or drinks there is a problem that is causing him some of the problems. Docs disagree with me but I don't know how else to explain all of this and that is one area noone has ever helped me to discover and weed out what is good and bad. He is diagnosed with colitis but from what I understand its not even the cut and dry data to back that completely up. So I am talking with still and meeting with on friday the alternative med doc. We spoke today and are going to get a nutritionist involved to rule out things. Another area I am concerned with is yeast in his gut. That happens sometimes when you are on antibiotics alot. Since this is the first time in simons life he is not on them, I think it deserves a look. Right now we are not sure if the stooling increase and the god awful smell of it is due to infection as all the lab tests on it are coming back negative. Its so hard to have no answers day after day,watch weight drop and drop and noone help. There has to be some way to get it under control and keep it there. Because he does not feel well he hates going to school and is just seeming too tired and upset to take there. I have made him go the last two days and that is very hard. We are readdressing what to do. As always please pray for us to find the answers to once and for all help his gi system to function and get him pain free so he can eat and grow. God Bless you all. Tracy

Check Me Out

2008-11-12T17:32:57Z

Hey check out my new school photo (can be viewed on the carepage). Just got it back today and I must say I look so handsome. My mom loves all our school pictures this year as me and my sisters look soo cool. I am feeling a little better. My bowel momements are less and more formed but my belly still hurts me and I am throwing up once a day still. My mom continues to work with the doctors and I am going to finally have some food allergy testing done. We are still doing the other homeopathic stuff, which I like b/c they taste like candy, but my mom is thinking I might need to be on prevacid again. This is the first time since I was 2 months old that I am not on any antibiotics or other drugs. It feels great. We'll see. She is working hard to try and put all the puzzle pieces together. I love my mom. Well my sissy Isa is home today with her tummy problem so I have to play with her. Keep the prayers coming we all love and appreciate them. Pray for my mom to be strong and not cry if I throw up. love Simon

Grateful and Praying

2008-11-08T23:06:41Z

Last night Dave and I were lucky enough to attend the POTCF annual retro dance fund raiser. A very good friend of ours puts in a lot of time and effort to pull off a very successful fundraiser for ill children who need that extra lift in their day when most of their time is spent at hospitals. It was a great time and the laughter and love that we are blessed to be a part of with friends who have been in our lives for many years is truly something to be grateful for. So today we still carry that love and presence in our lives with us. They say you only need a handful of truly good friends and we certainly have that. I cannot tell you how many times we were told that people are praying for simon. It always warms your heart to know that and allows you to focus on the power of prayer and hope that someday it all comes into its own with healing of Simons gut issues. We continue to experience alot of stomach discomfort, which leads to not eating anything and running to the couch in pain complaining of a sore tummy. With him running around naked prior to bath tonight I cannot help but notice underneath the clothing how thin and frail his little body looks. It really rips my heart apart. Its so hard to find the balance with the how much to try and get him to eat and how much we need to infuse him to get in calories. With him complaining his stomach hurts its hard to say "I know bud" and push through another 20 mls of formula. We do this from the time we wake up until well after simon has gone to bed. Its really what keeps him nourished. I don't know how long things will take to work or how long we will be in this position with his gut but I do know that it affects him alot and I can see that without his naps (as he refuses to take them) and the lack of calories of full feeling belly, he melts down quite a bit more these days. When I remove his shirt and can see his venus port (the access in his chest we use for blood draws and iv infusions) sticking a good 1/4 inch out of his chest I have to ask myself "what more should I be doing?" At any rate we continue to encourage food and infuse formula hoping, praying we can find the right mix to at least get this all under control and maintain a good flora within. Please ask your God to will that onto Simon so that he can feel good, truly good. Thank you so much for all your support of love. It is enduring us to go forward.

The girls started ice skating today. They were both very nervous and when Marr is nervous she cries so alot of that started off the lesson but I am the very proud mother of two girls who despite their fear, went out on the ice and slowly, very slowly, conquered that fear today. It definately warranted a trip out to get hot chocolate afterwards. Again, we are blessed. Please pray for strength for myself and David that we can have the patience it takes to get through all of this without affecting everyone else in the process. God Bless and enjoy your weekend.

2008-10-28T02:43:12Z

Our trip to clinic today was uneventful. Simon still has "wheezing" in his left lung so we did not do the pentamadine infusion. He is very tired today and lacking energy. He continues to have diarrhea and stomach cramping and we will be starting the vanco med tomorrow once I can figure out if what the pharmacy is telling us to dose him at is correct. The probiotic will be on hold due to the vanco just zeroing out the affects of it. Please pray for him, for us, that the vanco gives us some improvement. That at least Simon can eat without having pain that makes him stop after 3 bites. Today I can see it in his eyes again that he is starting to spiral down with all of this. He is starting to look ill again. Its so heartbreaking. Words cannot express how sad my heart is for him. Its so hard to watch this and not be able to help or do anything. He has been very attached to me lately and I just hold him and love him up because at least that I know how to do. We are trying to keep the spirit of Halloween houling through the house and keep things light around the kids but inside it weighs heavy on us as to what the next step should be. I still am not able to get in touch with the doc I hope to see for a more homeopathic approach. I will call again tomorrow and then get my docs to call and make a referral if I am unsuccessful. Please pray for another miracle of healing for Simons gut. God Bless. Tracy and David

Escaping Pneunomia

2008-10-24T23:58:39Z

Well after a very restless night and a few scary moments, a page to the Hospital, a dark drive to get childrens motrin to replace the expired childrens motrin in our cabinet and alot of replacing simons position so he could drain his nose and breathe better, we woke up to alot more coughing and him moaning and groaning. He had a fever last night and a slight one this morning so we headed down to Childrens to make sure he was ok. He has eaten nothing for a day and a half and is drinking little so the g-tube is a blessing to get some calories and fluid in him. It has not really helped due to the diarrhea as he is 12.7 kilos down from 13.8. He was given an iv bolous of fluids and showed trouble breathing and his oxygen level was low so we started oxygen. The docs heard fluid in his lungs so they were nervous of pneunomia and sent us for an x-ray. There was signs of webbing in the left lung but it was not pneunomia but there definately is some fluid. He was sent home on albuteral and a breathing aparatus for us to administer twice a day. He will go back on monday for follow-up and pentamadine (to prevent pneunomia) providing all goes well over the weekend. He still will not eat anything and the pain in his stomach when he does eat is intensified. It really sucks to see that. So going forward we have talked about changing one of his GI meds to vanco to see if that helps (pray to God it does) and I am trying to get into see a holistic type GI doctor to get on a diet/nutrition plan that will hopefully add to the aid of making this better. Its a vicious circle we have been on. We are no better off with this situation than we were last year this same time. Our docs do not want Simon back at school until we get it under control, so who knows how long that will take. Please pray for him and for us to find answers and make the right decisions.

I'm off to begin a late movie night with the family. ET "phone home" was the selection so I hope its well received and not too "scary" for the kids. God Bless and look at all that you have been given even in the face of fear and the unknown there is joy and reason. Try to find it. God Bless. Tracy

2008-10-24T01:25:18Z

As the diarrhea continues and the cramping worsens noone is giving us answer as to how to help simon. It is painful to watch him day after day deal with this. He can be running around one minute and down curled up in a ball the next saying how much his stomach hurts. I have attempted to contact docs via e mail with questions and articles but noone has gotton back to me. To make matters worse Simon contracted another sinus/cough congestion infection that now seems to be kicking him down. He has a low grade fever so for this we are concerned. Since he does not sweat it is not like he can rid himself of it by sweating the fever out. It can become very scary if his body temperature gets too hot. We had all the kids parent confs today and one thing we talked about in simons was weather its beneficial to have him in school if he is going to contract something every two weeks that takes him 10-14 days or longer to even start to heal from. From the standpoint of education simon is exceeding all boundaries and performing at a higher level than his age requirements. The teacher said he would not fall behind at all if he did not attend in order to stay healthy. All the kids received excellent reports so for that we are thankful. Please pray Simon infection does not escalate and that we can find a way to help heal his GI. Its not fair and its hard to sit and ponder and research and make calls to no avail day after day when all your heart tells you to do is help and make your son better. Please Pray hard for him to heal tonight. We also pray for Elizabeth to feel well as she is battling the same infection. God Bless.

A Working Immune System/A Mixed Blessing

2008-10-14T14:34:55Z

We hope everyone enjoyed the holiday gorgeous weather weekend. We did alot of fall activities up in Wisconsin and had a very wonderful time with the kids. Dave and I celebrated 18 years of marriage on Sunday with the kids and are now looking for a night out alone. Simon has, we found out yesterday, been producing antibodies to the remicaid drug that has been used to help his gi/diarrhea issues. Which explains why only a week after his last dose, he started with the loose stools again. He has had 6-7 diapers a day again with stomach cramping. His antibody level was really high showing that Simons new immune system is reacting to the drug and doing what a working immune system should do and that is making antibodies against it. This for us means the drug becomes ineffective and gives cause for having alot of reactions to the drug while it is being given and for a couple weeks beyond. The thought is to perhaps give iv doses of steroids 3 days before the remicaid and 3 days following, which would mean he would have to be accessed in his venus port (which is in his chest) for almost a week and we would then have to hope this actually works. We do not feel the benefits of a serious long term affects drug are worth the risks of all of this including possible serious side affects and infection. This is no way for a 3 year old active boy to live. It pains our hearts. Our docs are working with our Washington (NIH) and Philadelphia (NEMO) expert docs to see if there is something else or another drug that might do less harm and more good. It is such a hard place to be when your child is one of less than 100 kids who has this double component disease that they don't know alot about and don't know how all the drugs will affect the child short or long term. We ask you this all the time but we are needing you to pull out all the stops with your lord and pray that we can find a safe alternative for Simon so he can live a life free of injections and pain and just be the amazing child he continues to be. Please say an extra prayer for him tonight for some solid answers that will help his GI system recover and heal once and for all. Ironic that we battled the immune system and won and now another fight keeps knocking us down. I search to find the fairness in this. Soak in every moment you can, life is a gift. God Bless. Tracy and David

Remicaid Reaction

2008-10-06T01:25:16Z

Well it seems to us that Simon might be battling reactions from the remicaid drug he is on for his GI issues. The last two times he has gotton the drug he has contracted a serious sinus infection and days after he gets a red heated rash on his elbows, knees and ears which is painful to him. This from what I read about the drug could be signs of serious infection. Its so hard to know what to do. We premed him with steroids to avoid reactions but since this drug is newly used in children there is not much information on it. You can google it and read about the seriousness of it and wonder how its even on the market some. It does cause us worry. We are going on 10 days now of this infection with today seeming to bring him more symptoms of it worsening. I don't truly know what to do. The drug brings about such a risk for serious infections but without it he has serious diarrhea. All of it scares me to question what if I'm missing something or the doctors are and we run into serious trouble. So tonight I ask that you pray hard for Simon to see true relief and not run into this issue the next go around. Please pray for safety in the drugs he has to take and for us to make solid and educated decisions when it comes to his health and safety. God Bless. Tracy and David

2008-09-24T20:18:24Z

After 3 weeks of battling diarrhea, much debate about it being a virus, and now watching simon cry in pain everytime he ate a meal, we went into stem cell 4 weeks early to receive another dose of remicaid in the hope it will help eleviate some of the discomfort it is causing Simon. This is never an easy decision for Dave and myself. It comes with alot of questions as to why the drug given 4 weeks ago seemed to do nothing, what the level of the drug in his system is, and is this the right thing overall knowing the horrible possiblity of major side affects. Sometimes even after alot of soul searching for answers you come up empty. That is where we found ourselves. Empty with no good answers. Its not easy to constantly be the ones making these decisions knowing in the back of your head it could help but it could also hurt and could he heal all on his own. Weeks and weeks go by with hope that the latter is the case. I cannot even begin to explain how much worry and stress this seems to cause me. I don't want to paint a grim or dramatic picture here but as we all have to get up and cope with what life dishes out and sometimes even the trivial things seem to upset the waters a bit, I feel I just can't find the calmness to get out of the sea sometimes. It definately seems to weigh more on me. Maybe because I am home with him 24/7. Maybe its because I too want to be that normal mom overly involved in each of my kids childhood, living it up and laughing and going to events and sports and things, or maybe its just because the connection I feel with my kids is so immensely strong that when they are hurting it feels double for me. The most amazing thing of course, is that they roll much easier with the punches than I can seem to. I feel for Simon. He has endured so much and just shy of two years post transplant number two he continues to have to endure and keep the spirit and deal with all of this as if it is normal. And yes, its normal for him, for us, but it is far from normal. These drugs are not the perfect answer. All the kids who go to childrens go because they have a major illness. Any family you will meet there will attest to that. They put on their faces and carry on with all of lifes "normal" things but internally it is a battle that we all hope to win and turn around and help. There are so many possible side affects and reactions to these drugs that while your child is hooked up to an iv you watch every breath, every reaction that sometimes puts you on higher guard. Today was one of those days for us as simons remicaid gets ramped up, which means they start is slow and work up to the max amount that can be delivered. On the 3rd ramp up he was in pain, screaming and crying and seemed to be having a hard time with it all. Thanks to our wonderful nurse, who stopped it and let all things settle down and then started it over, slower and longer everything went ok. About 2 hours later, the boy next door to us had a reaction to a drug he was getting, he couldn't breathe. There is nothing like the fear of drug reactions for a parent or a parent watching this go on. So when I say none of this is easy, I mean nothing from struggling to get your child to eat one bite day after day and sending him to school with nothing in his stomach to watching a terrifying reaction, to wondering if you will ever be able to potty train. My sister and I after losing my moms entire family with the last being my gram just over a week ago, thought our new outlook or act should be to just enjoy and have fun. I swear that is what I want but it seems impossible to just do that with so much worry on board. I ask, please for prayers, not just for us, but for all families who suffer from a long term illness. Try to look at people openly and think of what they may have going on that puts them in a bad mood or a sad mood and just understand, don't judge, don't pity, just understand, sometimes life is not what it seems. Special prayer for our little man tonight that he may find complete gut healing and a good solid solution to help him. From the research his particular mutation is prone to this in severe degrees so we would like to be one of many who can beat those odds. God Bless. Love the day, enjoy those around you. Life is a GIFT, be thankful. love tracy

2008-09-16T18:14:40Z

Just a quick update on Simon. He is still battling diarrhea. He has been able to rid himself without antibiotics of the congestion almost completely but still has a bit of a cough and sometimes runny nose. His appetite is so so and I think because everytime he eats he seems to get a stomach ache. Kinda makes you not want food I think, unless its chips, of course. Which we have been keeping away from him. He has not been back to school and tells me he doesn't want to ever go back there. Sorda not a good thing to have to have him home. We went to the doctor yesterday and all his labs looked good. So despite the diarrhea we are able to keep his nutrition levels where they need to be despite losing weight, which he cannot afford to do. After talking to Dr. O in Philly and our docs here it has been said that Simon might be battling this GI thing for a very long time if not for life. That is a hard reality as life stops with the start of another episode. His dental appt. went well. The dentist was happy with the amount of teeth he has despite having the ED and told us that dentures probably would not be necessary and we might just need some cap work along with a retainer type flip. We go back for impressions and x-rays in October.

It is with continuing sadness that our family has suffered yet another loss with the passing of my grandma on Friday. My sister and I have arranged all of her burial and funeral arrangements and are headed there to say our final goodbye now. Please lift my family up in prayer and pray for a peaceful time to come that is enduring us for a long time and for Simon to heal once and for all of his GI issues. God Bless you all. Love Tracy

Sick Again

2008-09-08T22:01:41Z

Well I'm not sure if anyone still keeps up with us, we have not had any postings lately but just two and a half weeks into the school year Simon has caught something that is knocking him down. We kept him home today. I have had a cold, so perhaps I passed it along but he is suffering from a prety bad cough, cold type thing and today has had 8, so far, diarrhea diapers along with a red, hot, blanket type rash on his legs and forearms mostly. He has not slept well in 3 days (so you know that means I have been up too) and luckily I got him to take a nap late this morning. I have to say I am frustrated again. I have a feeling of worry with the fact that since he just received remicaid (which helps the diarrhea) a little over a week ago, why the diarrhea again. Already his butt is broken down. I can't help but think how will I ever potty train him with this cycle. It is also hard when I talk to the docs and I get "time will tell" or "we will have to wait and see if he fights it off". I mean we are almost two years post transplant number two. I like to think we'd be okay at this point. The fact that we have to continue to give immune suppressants for the GI issues just knocks us back down and does not allow his new immune system to come into full swing. I always have the fear in the back of my head that something can take away that immune system. It takes about 5 years for it to be totally solid and with such a rare disease like NEMO noone knows. Since Simon has two disorders and the ED is related to skin issues as well I have said for the last year that I think the skin breakouts along with the diarrhea are related to the ED gene malfuntion and from what I've tried to educate myself with, there is nothing that solves that either. So we are left to wonder if it will ever be "ok". If he will ever have a time where germs or not having diarrhea are not an issue. Like I said, today, its a hard day. Reality sometimes, it hits you smack in the face and you can't seem to get around the sting of the hit you've taken so many times to think of the day to day or that your in a better place than you were before. Today I just think our son suffers, silently sometimes, outwardly others and in his heart he remains strong and spirited. I wish I could say the same about me. I think I suffer emotionally more right now trying and hoping to find a way to make him better. My heart drains everytime I open a diaper and see nothing but liquid or hear him say "ouch mom" as he grabs his bottom. That is not right, it should not be. Please pray earnestly tonight and beyond that we can resolve this and find a way to make it better. I am trying so hard to get omega 3s, and EFAs into his diet through foods to help his immune system, amongst other things and I'm running out of options or maybe I'm just running out of steam. Please pray I can find the energy to conquer this for Simon and for others affected like him. Please continue to keep him and us in your prayers. The everyday is not like others for us, there is always some underlying stress that affects us all and I just want a time where that is gone and we are coming full circle to complete healing and total happiness. How do we measure happiness? For us its just in living the day to day without worry of illness. Pray for that. God Bless you all. Admire and hug your kids, they teach us so much. Love Tracy

Happy Birthday Little Man!!!

2008-08-25T03:34:17Z

Today our little man turned 3. What a blessing! We had a whirlwind of celebration starting with a Pirate party complete with a homemade pirate ship, plank included (thanks to dad's wonderful sense of building) and little friends to help Simon celebrate. From there we had all the family over for a full day of celebrating 3 years of Simons life. He was so into his birthday this year. With his imagination running wild he comes up with the craziest things to say at the absolute most appropriate times and we all were cracking up at him as he opened his gifts and shouted out phrases with complete excitement. So wonderful to see the energy of life running through every inch of him. He loved his dress up pirate hat, eye patch and make-up, his pirate cake, the fact that everyone had come for "his" birthday and all the presents. We are just humbled by his presence. Not a day goes by that we do not thank God for Simon being here. For his energy, his health, his progress. For his sister Marriana who saved his life by donating her stem cells to him at age 3 ½ and again six months later. Two and a half years ago when Simon was diagnosed we were told "sure you can fix this, with a stem cell transplant". It was dropped like a bomb on us and we had no idea just what it would all entail. To this day I hope no one takes any type of transplant lightly. It is a long, hard, complicated road that messes up many other areas of the body and puts everyone involved through emotional and physical challenges for many years to come. If you are lucky, and we like to think we are, you have an outcome of being "cured". Ours took two rounds and we are not out of the woods. We also suffer a lot of side affects. But we make progress, we move forward, we learn, we live, we love and we continue to pray. Today we lived. We all went to Kiddieland Amusement Park and celebrated as a family the life of our son. He and his sisters loved it. Simon cried when I said no to the log ride but after a little persuasion he was sitting there with dad and sissy going down the steep drop while mom watched with a knot in her stomach and a tear in her eye. He LOVED it. He is a daredevil and his dad loves it.

It has been busy and tomorrow we head to stem cell for more remicaid. We saw the GI doc on Friday and when I asked if she thought Simon would ever be able to go without it she said "I really don't know but I think he will always need it". It made me sad and scared especially since no one knows what long term this drug causes everyone who takes it. It's a very scary place to be after struggling so hard to make him well. He definitely is at a point that he, and myself included, do not want to go to the hospital for anything anymore. We have loved our laid back schedule of once a month and we are done wanting to go to any appointments. With this week beginning we also head back to school and that means Simon too. He starts his program on Tuesday with an hour with us and then his first day without me on Wednesday. I meet with the "team" there tomorrow afternoon to go over last minute details to keep him safe and cool and then I have to let loose the strings a little and watch him grow. A bittersweet thing. So as we head into a new chapter for us here, please continue to say your strong prayers to complete healing. For his diarrhea to once and for all disappear (he has the beginnings of it back and this is at the 8 week in between remicaid doses. We had hoped to be able to go to 12 weeks between. Time will tell). And please keep him in your prayers for a very safe and very healthy school year. We are so proud and so blessed. Thank you for continuing on our journey with us. God Bless you All. Tracy and David

2008-07-15T02:13:44Z

Its been a topsy turvy week. Not so much because of Simon but he does seem to have some skin issues errupting. We stopped the steroids completely over a week ago and slowly bumps are appearing. I am wondering if the heat has anything to do with it but around his g-tube site it is dry, scaling and red with irritation. He is itching it alot. His stooling seems to go up and down with normal to watery for no apparent reason. I try to pinpoint something he ate that he usually doesn't but his diet doesn't change too much so it keeps me baffled. It is a major project to get decent calories in him daily and with the strong will of an almost 3 year old, some days I surrender to his will and live with the 700 calories he will take including tube feeds. We still have two weeks off before returning for pentamadine and will see how the stooling is at that point. We are hoping to keep him off another dose of remicaid for weeks beyond that.

We celebrated our daughters 6th birthday with a luau party with 18 girls and lots of grass skirts, leis, water limbo and lots of cupcakes. Simon was right in the midst of all the girls. I was even on radio disney the morning of their birthday doing a shout out to them from me and Dave which was really kinda fun. We have let simon venture into pool/hose water more and have been bathing him in tap water. I'm not sure if that is contributing to his skin or not. We do meet with the dermatologist next week to see what he thinks. We are moving along, enjoying the summer and hoping to spend some good quality time together all through august at various activities and fun outings.

I want to say too that I lost a very special person in my life on Saturday. My aunt who has been battling for the last 4 weeks left peacefully on saturday. She has been like a mom to me since I lost my mom 13 years ago and we are very sad to have her gone. Her presence will be strongly missed. I have lost 3 aunts total now in the last 2+ months and that leaves us now with no aunts in our family. If you can just say a peaceful prayer for them all to be up in heaven, reunited, sipping wine and laughing. I know my mom and aunt were close sisters and laughed to the point noone could understand them and we all would have a hard time figuring out what the joke was but laughed too because their laugh infected us. Remember your loved ones and how much they mean to you. If they are here let them know you care. I was lucky to spend hours with my aunt before she went into a drug comotose and able to sing to her and tell her how much she was loved but we all don't get that special moment. God Bless you all, keep praying, keep praying.

Remicaid Continues to Be Necessary

2008-06-29T00:45:59Z

Well its been almost 4 weeks since our second dose of remicaid. I wish I could say all things are still great but simon started to show signs of the same cycle almost a week ago. His appetitie dropped and he has had increased stool that is now liquid. He has been gagging and vomitted this morning. Its really a hard reality to know that for whatever reason his system is overproducing something that sets all of this off. We talked last week about the fact that he has not grown in height or weight at all this year and what to do about it. Because he is not retaining alot of what he takes in and hes much more active its becoming a challenge to keep up with his calories. I find myself putting more formula through his g-tube. We return monday for another dose of remicaid. Its a bit disappointing to me to be honest. I really was hoping since he seemed to respond to some degree to the immunizations he first received, and has received his second round of 2 of them, that his body would be attempting to heal this GI stuff. Noone knows what is to come with all of this and that is a hard reality.

He is registered to start pre-k 3 in the fall through early childhood so we can only hope and pray that he will be able to attend that and grow with a peer group to manage how to be around other kids more and to make some new friends. We think he will love it. At any rate I ask for prayers that the remicaid continue to improve simons gi issues to a point where he won't be so dependant on it and for a special prayer for my aunt Donna who is not well in the hospital. Please keep us all in your prayers. Thanks and God Bless. Tracy and David

Our Superhero

2008-06-13T04:16:51Z

Our little superhero. Well its been a bang to the summer here. Simon is very into the water of the hot days and its really hard now at his age to keep him out of sprinkers, pools and the like. I have a hard time watching him in the water as my fear for illness from the water is still weighted but its also hard at almost 3 to not let him be a boy. And all boy he is. We had a impromptu pool, water gun, slide splash bbq with our neighbors which was loads of fun for all the kids and adults too. Simon loved playing with the girls and a few other boys and being in a pool. We got home at 9 with baths to have and calming to engage in but managed to get all settled by 9:30. Simon and the girls had a blast. With our first week of summer underway we have had a few issues and Marriana almost broke her nose and jaw falling off a piece of playground equipment after t-ball last night but she is a trooper and ok, very bruised but handling it like the amazing child she is. So I am ready for next week to be calmer.

Simon is doing ok. He is stable with the steroids and Ihope to drop them next time we are in clinic but I'm in no hurry as he is ok. Stool is ok with the remicaid and we hope to hold off on another dose for 3 more weeks or so. I had hoped he be a bit better than he is but hes much better than he was and loving life so I'm going with it. I have to let him have fun and that is what I hope to give him. Please continue to pray that all things improve and that he is able to take in all summer has to offer and be healthy and strong.

He was evaluated for preschool and is set up for two programs of which we have to choose so I hope he will be safe and I can let go for a couple hours a day as he is ready and totally sharp to learn more. I wish everyone could meet him, he is so amazing. Please keep praying for total recovery and healing of a new immune system and gi system that works without medicine. thank you. God Bless. Tracy and David.