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.
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.
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
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 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.
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.
Things are much improved today. After only two days after the remicaid we have had only 3 stools today and the last one this evening was almost formed. Amazing really. We only wish remicaid didn't come with such a potential scary tract record. Please continue to pray he can continue on this medicine without incident or harm to him. It will be a long process before he can stop it and will come in 2, 4 and 6-8 week intervals. He is in good spirits and to the common bystander they would observe that Simon is as healthy as a horse. Someday we hope this to be true. Yesterday he decided that things were not exciting enough and while trying to nap he ripped his g-tube out of his stomach ballon that holds it in and all. I went in his room to see all the commotion only to find him sitting on the bed with it laying next to him and the hole in his stomach oozing vomitting smelling fluid. I panicked a bit, shoved it back in taped it down, called the hospital, ran to the school to pick up the girls and headed downtown. Thanks for keeping me on my toes son. Needless to say they taught me how to reinsert it if he does it again, which I am watching him to try and prevent that.
He had a blast at t-ball tonight. It is always so amazing to us and all the people who see him weekly or meet him for the first time how well he verbalizes things for a 2 1/2 year old and how his imagination is so vivid with playing and making up games for the other kids to play with him. He really is a magnet who attracts everyone to him with his explosive and dynamic personality. Its wonderful to witness.
Lastly, but not by a long shot the last piece of news I just received this evening. VNTRS......steady at 93% overall. What is most happy about these are that the t-cells are at 99% donor. That is very important in immunization building. No b cells, also important but steroids eat those up so once we get him off the steroids we hope to see them come back full force all marrianas.
We will post when immunization titers come back and we are due back down at clinic next wed. for another iv infusion for prevention of pneunomia. Until then, pray for complete healing without further harm and for his immune system to work and keep him protected now on the remicaid and that his gi system continues healing. Thank you so much for the prayers. They are healing. God Bless Love Tracy and David
He had a blast at t-ball tonight. It is always so amazing to us and all the people who see him weekly or meet him for the first time how well he verbalizes things for a 2 1/2 year old and how his imagination is so vivid with playing and making up games for the other kids to play with him. He really is a magnet who attracts everyone to him with his explosive and dynamic personality. Its wonderful to witness.
Lastly, but not by a long shot the last piece of news I just received this evening. VNTRS......steady at 93% overall. What is most happy about these are that the t-cells are at 99% donor. That is very important in immunization building. No b cells, also important but steroids eat those up so once we get him off the steroids we hope to see them come back full force all marrianas.
We will post when immunization titers come back and we are due back down at clinic next wed. for another iv infusion for prevention of pneunomia. Until then, pray for complete healing without further harm and for his immune system to work and keep him protected now on the remicaid and that his gi system continues healing. Thank you so much for the prayers. They are healing. God Bless Love Tracy and David
For all the prayers we asked of you we thank you for a day of infusions that went well. Simon did great Dave said (I was on a field trip with the girls - hard at times but I called the hospital 3 times to check in) and he was in his usual personality plus mode. Singing for the girls there all the t-ball cheers the girls sing at their games. He has become known as the D-backs biggest fan and mascot. Its cute. He also got to meet Bennie the Bull and a few luvables, which I'm sure was much more exciting for Dave than for Simon. He was proud of the Bennie the Bull signed autograph but not so much the girls. Guess dad can keep those. Anyway, labs looked good. They drew everything today. Our igg remains stable so that is good. His vntrs were drawn today as well as immunization titers to see if he shows any antibodies to the shots he got 3 weeks ago. We pray to see improvement in the stooling, vntrs that are all marrianas cells, and antibodies developed from the shots he received. He got a major high iv dose of steroids today and was extremely aggressive this evening. We will taper back to his oral dose tomorrow and hope to be able to start dropping that next week when we go back for pentamadine iv infusion (to prevent pneunomia). He will then return week after next for another iv dose of remicaid and so the course will continue until we can give him time. Time to show us what his body can do and how much we will be able to space out the remicaid. Hopefully we can get to at least every 8 weeks and beyond. Thanks for all your prayers. Please keep them coming. We believe so much in the power of prayer and in large doses. God Bless. Tracy and David
Tonight as we head closer to our first remicaid infusion we would like to ask all of you who go to your place of worship tomorrow to please pray for Simon. Please pray specifically for him to have no issues or negative reactions including rash or any complications with the actual infusion of the remicaid drug as he has developed a small amount of antibodies to it b/c he had it once before, that he also finds healing of his colon and gi issues through this drug and that short or long term the treatment using remicaid cause him no harm for any type of problems including life threatening ones. Since this drug is given in intervals it will be a long term solution and we hope one day to be able to stop it but right now that seems very far down the road. With it causes him additional immune suppression we are not sure really how safe he will be while on it. Tonight Simons bottom is so broken down from all the stooling. No matter how much cream we put on or how much we change him it just gets so bad. I plan to open his diaper and let him just air out once he finally falls back to sleep. I woke him changing him b/c it hurt him so much. Again, we ask for your prayers. Please keep him in your thoughts Monday around 11 am as that is when he goes in for his appointment. Since he pulled his iv port line out today Dave will have to hold him down again to have another needle inserted in his chest. Never fun. Thank you for your prayers and love. Tracy and David
Todays scope went okay but the photos needed no explanation. As soon as I saw them before our doc even said a word I knew things had gotton much worse. He has numerous ulcers in his colon that when lightly touched blood ooozed out of. Its hard to understand when you see him running around loving everyone and loving life. It took all I had not to lose it talking with my doctor who has seen both the steller and emotional side of me. I had to focus on what to do now. I have been praying to God for a sign of what should be. What our next step should be and after last week I knew this was what we were going to have to do. It looks as if none of the drugs used for colitis are working on Simon and I was told his only hope for healing is the remicaid. Its a very hard thing to swallow considering this is totally unchartered territories for NEMO boys. I have contacted Dr. Orange and e mailing with him again and he too feels we need to do this and I respect his opinion. He tells me it is scary and we can only hope and pray for the best to help Simon. It is hard to be ok with any of it. WE do not know what Simons new immune system is doing and we probably will continue not knowing with all the additional suppression we will place upon him.
We love our children and mothers day always brings the love out so much more for all of us but there is nothing in this world I wouldn't do to fight for and heal Simon. I am hoping for a better weeks since last week we were hit with several obstacles from minor to concerning and this week we just have to hand over our worries and ask God to know what he is doing. Its all in his hands. Please pray. My heart remains heavy even though I feel the decision weight has been lifted, its not for the reasons I had hoped. God Willing Tracy
We love our children and mothers day always brings the love out so much more for all of us but there is nothing in this world I wouldn't do to fight for and heal Simon. I am hoping for a better weeks since last week we were hit with several obstacles from minor to concerning and this week we just have to hand over our worries and ask God to know what he is doing. Its all in his hands. Please pray. My heart remains heavy even though I feel the decision weight has been lifted, its not for the reasons I had hoped. God Willing Tracy
I can't even believe I am going to say this again but we are going to have another (mini) scope done on Monday to rule out infections in the colon. We have had a rough week. Simon started vomitting monday evening and continued through the night with dry heaves but also had milky stooling with blood in it all night long. He was out of it tuesday morning which sent us downtown for iv fluids, labs, stool studies and viral studies. So far everything has been negative, of course. We opted to bring him home and try to get fluids in him ourselves, which I think I've been able to do decently with alot of bolous feeds of special formula through his g-tube from 6:30 am until 10pm daily. He is hydrated but not eating much at all. So of course his weight is down. Still we are going to do this through the weekend and hope he continues to get a little better. He is very tired and poops out really easy. His skin too has had a rash that comes and goes and is very itchy. After the scope we will have answers or move forward probably with the remicaid drug to try and get him stabalized. Its been such a hard decision that we have discussed and sat on hoping things would improve. It is a long term committment to treatment and without really knowing long term side affects and it supressing his immune system even more its not an easy one to forge into. We ask that you continue to pray for him and for our family to have strength. This brings upon alot of stress and no matter how hard we try we are human, we get tired, we get impatient and sad. We pray the days ahead are bright and full of promise and good news. We will not find out about our immunization antibodies if they are present until after the 19th and if we do start the remicaid I think it really doesn't matter b/c he will be suppressed no matter what. I wish all you moms out there a beautiful mothers day. Relax, look around and just be thankful that no matter the situation you have been blessed to be a mom. Thanks for checking in. Please continue to pray. Tracy
Well I got to spend the evening with my two favorite boys tonight. The girls had a b-day party (which they are still at), and so Dave, Simon and I decided to go out to dinner. It was a really relaxed evening and alot of feeling normal and smiles and inner peace. I said to Dave "wow I feel so normal right now", and his reply was "good keep feeling like that". When we walked out of the restaurant there was a perfect rainbow in the sky. Simon noticed it first and was very excited. He wanted to take a walk over to see some sculptures and as we turned around to walk over to the park on the hill up in the sky was an amazing site which I have never seen before. The rays of sun were coming through the clouds in an almost perfect godly vision as if a sun ray of hope and peace. I just stood there staring at it reflecting until I was jolted out of it with Simon marching with Dave down the sidewalk chanting their own little song and holding a sucker up in the air with the biggest smile on his face. He is just so happy all the time. We are so lucky to have him to keep us in check. We feel his pain and his suffering but above all else he totally keeps us amazed by all that he can endure and not seem scathed by it at all. We are so fortunate.
The medical side of things are the same. lots of stooling but we are trying to wait it out. I"m not sure how long we will do that. My docs say not to let it go on too long and get much worse. So we'll see.
Please continue to pray for complete healing as our child deserves so much as he give out so much to all of us. Thanks. God Bless. Tracy and David
The medical side of things are the same. lots of stooling but we are trying to wait it out. I"m not sure how long we will do that. My docs say not to let it go on too long and get much worse. So we'll see.
Please continue to pray for complete healing as our child deserves so much as he give out so much to all of us. Thanks. God Bless. Tracy and David
Just a quick note as I need to get some sleep. Isa was up throwing up last night and simon decided to just get up to keep us company and he never went back to sleep from 3 am. Anyway, this week at clinic simons labs looked pretty good. We decided after a long week and lengthy discussions not to go ahead with the remicaid. We felt his symptoms were not as bad as they were in February and we are really scared to give it to him. Of course since this decision his stooling has increased and today he went more than hes gone in a few days. His butt is now broken down again to where you can't touch it. Its like if you miss it one time and it sits in his diaper for 5 extra minutes thats all it takes, and I am constantly checking him. Doesn't matter how much cream you put on. So tonight he is uncomfortable and, of course, I question my gut as to not go with the remicaid. Just not sure what is right anymore. We ask that you pray for relief for Simon with this GI issue and for our dear friend Jacob with his skin issues. Seems our boys are having the hardest time of it. Thanks for checking in. Tracy
