Trying to stay focused on the positive

So it has been an incredibly busy and stressful week since we have been home. I have anxiously been checking on line for the results of Preston's blood work in relation to his immune system. It finally came in last night. I don't know all of the particulars about where we go from here, as we haven't actually spoken with our immunologist yet. We followed up with GI yesterday and his biopsies looked good, we are going to start weaning him off medications and prayerfully he will do well. He has also gained a WHOLE POUND in the week we have been home!!! 20lb 9oz I don't remember doing a Cell flow cytometry report with Sam, so unfortunately I don't know if Sam's was the same or not. But essentialy Preston has low specific T cells, and B cells, and NK cells. When I called our PCP last night she explained that the specific cells that he has that are low, are the ones that have to do with viral infections, which really makes sense, since most of his illnesses, although he has been pretty sick with them have been viral. When he gets sick he seems to be sick for quite a while each time, and that would make sense being that he has low numbers of cells to fight of viral infections. He is different from Sam in this aspect because Sam as an infant had lots of illnesses that were bacterial. And then I also found out that his body did not create antibodies to all the vaccines that he has been given. He had little to no response to them. I know Sam had this testing done, and his numbers were low, but I believe they were higher than Preston's. So I am just trying to wrap my brain around this latest information. Again I haven't spoken with our immunologist yet, but I am suspecting that we may be looking at IVIG or something along that line, which then leads to another issue, IV access! That is something that we just struggled with at MGH and to think that we will have to do it over and over again is rough.... But for now I am focusing on the fact that God HAS ALWAYS brought us through all that is before us. I am standing in Him today, knowing that His strength is perfect, and that He is in control:-) Preston already knows that.....

Sam has also had a follow up with his GI doctor. He was very happy with how Sam is doing. We are actually going to start a dairy trial. Sam is so happy about it. It is going to be a long attempt, but in about 4-6wks we may allow him to have a small amount of milk to drink, but first we will be doing products that have milk and then are baked for two weeks, and then we will move onto yogurt and cheese for two weeks, and then on to milk! Sam weighed 45.8 lbs and was 46 inches tall! He is growing so big. And man oh man is it hard to get a good picture of him these days. This was the best I could get with like 20 attempts. He is doing fabulously in first grade and I am so proud of him!

And my sweet Sophia is doing very well. She has adjusted well to her new school and is making lots of new friends. She had a little bit of fear when she first started her gymnastics class but she is now doing very well and enjoying it so much. She is fantastically healthy which I am so happy about!!!

2 Samuel 7:18 "Who am I, Soveign Lord, and what is my family, that You have brought me this far?

Endoscopy and sigmoidoscopy

Today was Preston's scope. It was a fairly rough morning with lots of crying due to him being hungry prior to the procedure. Thankfully they were able to take him a little earlier than expected. I was able to go into the procedure room and stayed with him until he was asleep and then had to leave. It is so awful to see your child limp and lifeless and their eyes roll back in their head. He gave the team quite the scare, after he was given the sedative his throat went into spasms so his oxygen saturations dropped and they had to give him a short acting paralizing medication called succinylcholine to help them break the spasms and be able to get the tube down so they could oxygenate him. He did very well. His esophagus looks great, and his colon looks good. They did do biospies of both of these areas. His stomach looked pretty inflammed and swollen. Unfortunately they won't know what is causing all of the swelling and inflammation until the results of the stomach biopsies come back. But for now I am so very thankful that all went well that he is now resting comfortably and there is FINALLY talk about discharge!:-)

This is in the recovery room before he woke up at all. They actually had this adult sized oxygen mask and put that over his entire face almost...

Sleeping peacefully:-) Thanks for your prayers!!!

IVIG Update and BIOPSY RESULTS!!!!

SO not even sure if I wrote on here about Sam's reaction to his IVIG a couple of weeks ago. Anyways due to that we had to go in and see his immunologist today. I will be honest, the plan for us was that the may IVIG was going to be the last one if Sam was illness free the last couple of months. I had that so stuck in my head and was so looking forward to our break, but there were too many things stacked against us:-( So not only are we not done, we are going to try a new product and we have to go back into Boston Children's to do it. I love it there, I really do. But financially it is so hard to be there. Parking is astronomical and they don't feed him while he's there, so then there is buying food, gas to get there, babysitters for the other munchkins, etc etc. I am hopeful that we can switch products have Sam do well with it, and then switch back to our local hospital. His immuno was also concerned about his skin and is sending us to a dermatologist. We actually arent able to get into that doctor until July, but that is ok. WE have tons of appointments going on in the next few weeks. And the BEST NEWS OF THE YEAR: Sam's repeat biopsies for the eosinophilic disorder have come back negative!!! I am beyond thrilled and so thankful. So the dietary restrictions have worked and now his gut is healing! I am just so excited about it. So we will meet with the specialist team, to see where we go from here next week. His regular GI seems to think that we may be able to add back a food that we have taken out. But that will all be decided next week. He weighed 44lbs exactly today so he has gained the weight he lost back almost completely, and is up to 47 inches I think!!!

Colonoscopy and Endoscopy (AGAIN)

So Sam had another colonoscopy/endoscopy procedure yesterday. This one was to follow up on the one that they had don in january with the eosinophilic colitis diagnosis. They are hoping that there is a decrease in the amount of eosinophils related to the dietary changes that we have made. I am praying for a significant improvement. I guess the biopsies showed more than 40x eos per high power field. So I am praying that there isn't nearly as many. The procedure itself went very well. It was getting to that point that was quite the challenge. We had to be there for 12pm. We arrived on time, and waiting for a little bit until they came and brought him back to the pre-procedure area. While we were in that area he started complaining about how hungry he was and I felt so bad for him. They actually requested that we let another child go ahead of us because the other child was doing really poorly. So I agreed. It delayed us by HOURS!!! Then I was really feeling badly for Sammy. But he was such a trooper. He was thrilled to be playing video games while he was waiting. I guess that is the benefit of not having a Wii, or any of the other gaming systems, he is beyond thrilled to use them when he gets the opportunity whether he is hungry or not. It was so funny watching him play, he was totally sucked in and Preston was enjoying watching him too. They allowed me to go into the procedure room with him until he was asleep. They actually allowed him to pick the scent that was in his anesthesia mask and he chose root beer. So as he was drifting off that is what he smelled. Once he was asleep I gave him a kiss and they walked me out. After that they put an IV and attempted to get blood from him. They were able to get the IV in on the first try, but they had extreme difficulty getting the blood drawn. They said it appeared that his blood was too thick. They eventually got it praise God. And then they proceeded with the procedure. So then Dr. Z took several biopsies and I should get the results of those next tuesday. Poor guy felt awful on the way home and vomited. He also had some belly pain as well. He had a little bit of a lowgrade temp as well. But woke up feeling better this morning, although he is still having loose stools. Poor little guy... Thanks so much for your prayers for him!!! I am so thankful that my friend Sara was able to come with me yesterday so that I didn't have to go by myself. I brought Preston with me and Sara was my partner in crime for the day. She kept P while I went in with Sam. She distracted Sam, she was a comic distraction for me, and she dealt with the vomiting on the way home. Thank you Auntie Sara!!!

FINALLY BACK!!!

Gosh it has been a crazy couple of months. Thankfully I got a new computor for Mother's Day and am now going to try and catch up on all the posting that I am behind on. But for now I will just post some new pics of the kids, and ask for your prayers as Sam is going back into MGH tomorrow with Dr Zella in order to have colonoscopy and endoscopy. They are looking to see if the dietary changes that they have recommended have made any difference with the eosinophilic colitis. I am praying that they have....but I also wondering how we will know which foods are the culprits since we took so many out all at once. I am just hoping that we can slowly introduce foods back into his diet again after all of this craziness. He has been such a trooper. He was able to have a light breakfast today but has been unable to have anything else besides clear liquids ever since. But he has been so great about it. We were so blessed to be able to go to a wonderful church service today. I was actually able to sit through a good portion of the sermon today as well because Preston fell asleep on Matt. Usually the little guy wants to eat right after the song service and I miss some of the sermon every week. This week I was able to hear most of the preaching and didnt have to leave until almost the end. Matt has been working so hard on the new bathroom and it is just about complete. It looks amazing. I will have to post some before and after pictures this week if I can find the old ones. He has worked so tirelessly on it. It is so nice to finally have it done and be able to enjoy it. Preston and Sophia both seem like they are suffering with symptoms similar to croup. Please be praying for them for quick healing and no need for medication or doctor appointments. And also please be praying that Sammy doesnt get it.

Eosinophilic Gastroenteritis

Well we FINALLY have a diagnosis. I struggled so much two weeks ago with allowing them to do another colonoscopy on Sam. I had always felt like I let him down by allowing them to do it in the past and then it was always for nothing because they never found anything out. As I think about the last 3-4 years of his life (and actually all of his life there have been GI issues) I am shocked to think about the countless procedures, testing, blood work, etc etc etc that we have done. And always things came back inconclusive or "not normal but we don't know why." All that has finally come to an end. It isn't an easy diagnosis but it is a diagnosis none the less, and prayerfully one in which we can treat him agressively and get him on the road to recovery. I have been googling it and reading everything I can. This is what I know so far: -Very rare (of course it is because we don't do "normal" here:-); one website says that there are only 280 documented cases in medical literature. (http://emedicine.medscape.com/article/174100 -the problem is that eosinophils (a type of white blood cell) are in areas that they shouldn't be, causing abdominal pain, diarrhea, cramping, weight loss, poor absorption of nutrients, and I also read it can cause hypogammaglobinemia!!! (Imagine if this is what has caused his immune issues as well? -there are 3 types, and I am unsure of what type he has, from the literature I have read, it doesn't seem like he fits easily into any of the catagories -the disease can go into remisssion but recurrance is common -treatment can include: long term steroid use, very very strict diet, or no food at all and only a specific formula for 1-3 months (I am desperately praying that we don't have to do the formula as many sites quote that they aren't able to drink enough becuase it tastes so terrible so they end up with feeding tubes Some of the websites that I have looked on and found out info are: http://emedicine.medscape.com/article/174100-overview http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis http://apfed.org/drupal/drupal/ I am relieved but also heartbroken for my boy. I just wish that I could take all of this from him. I wish he didn't have to struggle so much health wise. I wish that they could just fix him, or that God would heal him completely. He is such a trooper and so strong in dealing with all he does. I know that God has given him this amazing personality to deal with all of this conflict, and I am so thankful that he has such a peace in his heart while dealing with all of this. As of now we have to eliminate all dairy and eggs from his diet. Poor guy cried tonight when Sophia got to eat the last yogurt:-( So we will be definitely experimenting with some new food choices. If anyone has any recommendations about dairy free stuff we would greatly appreciate it As of now I have to bring in some stool for testing, and also some more blood work for him. We then are going to see two specialists next week. Beyond that I am not sure....I have also been looking into actual specialists that specialize in this disorder, and although CHOP in Philadelphia has a clinic for eosiniphilic disorders it doesn't talk much about Eosinophilic Gastroenteritis, it talks about Eosinophilic esophagitis...So not sure

Colonoscopy and Endoscopy Update

Sammy did so awesome!!! He was so brave. Unfortunately the doctor was WAY BEHIND on monday. We were supposed to have the procedure at 12:30pm but didn't end up having it until after 2pm. While we were waiting Sam got to play video games with Matt. Since we don't have them at our house it was a really special treat for him and he loved it.

Mr Preston came with us as well. He was such a trooper. I don't have too much breast milk stored up in my freezer since I had to get rid of all that I had pumped when I was eating dairy and soy. He is such a love!

The procedure was supposed to be about half an hour to about 40 minutes. It lasted about an hour. The doctor said everything looked good physically to his naked eye, but that we need to wait for the biopsy results. He said that he may have bled more than a typical kid, but not much. So praise God for keeping the bleeding in check!!! Once he got done he went to the recovery room, where we waiting for about an hour for him to wake up. He was pretty out of it when he woke up.

So we will call next week to see what the biopsy results show. Thanks so much for your prayers and support during this time.

Colonoscopy/Endoscopy and Crocodile Tears

Oh my poor Sammy. So yesterday I told him that he would be having the colonoscopy and endoscopy procedure tomorrow. He was perfectly fine with it once I told him that it was Dr Zella that was doing it. He drank the drinks that he was supposed to like a champ.

He was so brave and just drank the senna and magnesium like a champ. This prep was so different from the ones he has done before. The other times were more drawn out. WE didn't really do anything different until yesterday evening at which time he drank some senna. And then today we did the magnesium citrate and then tomorrow the fleets. In the past it was a much slower gentler process. But so far he seems ok. I am surprised he hasn't stooled more though. Praying that he is all cleaned out and that the doctor can visualize everything he needs to.

So again he was perfectly fine with everything until today! Today was the day that he stopped being able to eat. The poor guy was heartbroken. Of course today at church they had a big turkey stew dinner, which he couldn't go to. And then here at home whatever daddy or Sophia were eating he wanted. He said things like "I can't believe you get to eat all this and I don't. I can't believe there are only four things I can eat (popsicles, italian ice, jello and broth)" Oh he is just so sad. I brought him to the store and let him pick out all kinds of things to drink during this process, but all he could focus on was what he couldn't have. My poor boy, I just feel so sad for him.

So please be praying with us that we get some good answers tomorrow. Some answers about all this belly pain that he has, answers about the bloody stools that he has. Answers about all his GI issues. And also be praying that Mr PReston behaves tomorrow as well. Little munchkin is coming with us as I am not sure if Sammy will be admitted overnight or not, and wanted Preston to feed well as much as possible in case I am staying with Sammy overnight and I won't get to nurse him.

Tubby Time

Sam and Sophia have been asking for MONTHS to take a bath with Preston. I have always been very hesitant and haven't allowed them to do it. But today I had the idea to put the baby tub in the tub with him in it and then put water in the regular tub for Sophia. So they were "taking a bath together" like she so desperately wanted. It was cute, they both were smiling and happy to watch each other. Preston has really started to kick and splash alot in the tub:-) And our cat Lewis was super curious about all the commotion in the bathroom so he came in to watch too. Please pray for Sammy as he has his colonoscopy/endoscopy on monday. I am trying so hard not to be anxious and to remember that God is in control. But unfortunately for some reason I am scared about this. I know that God will be with him through it all, and that He will protect him, but I am still anxious. I just keep thinking back to the last colonscopy where he had the hematoma and subsequent hemorrhage. SCARY!!! So please be praying for him, and for us that we can stay focused on God and His power. Also please pray for the prep for this, that it doesn't hurt Sammy's tummy. Thank you!!!

Endoscopy/Colonoscopy Again?!?!?!?

Poor Sam! Since the fall he has been complaining about his belly hurting. We had been to the GI doctor in october and had kind of had this plan that we worked out with changing his meds around and stuff. So we did all that, I had his primary do a KUB (ultrasound of his belly) to make sure there was no constipation or gas issues. Which there wasn't. I have sent several emails to his doctor over the last month regarding the pain and wondering what we should do. Since the beginning of december Sam's appetite has been affected, there are days when he takes a few bites of food and then just starts complaining and won't eat any more. He has complained when he has and when he hasn't eaten. We did a dairy free diet for a little while to see if that made a difference and it didn't. Once when Sam was over with my MIL they gave him this papaya supplement. And it seemed to help him. So I brought it with us to ask them what they thought about it. When I told them that it seemed like it helped him a little, that got the ball rolling in their mind. Apparently there is some enzyme deficiency that the papaya might help. So now they want to do another colonoscopy and endoscopy:-( I am so sad about this. I HATE him being put under general anesthesia. There are two reasons that they want to do this for: 1) when they did it in august 2010 they saw that he had what looked like "chronic gastritis" which is an inflammation of the lining of the stomach. They didn't understand why his stomach was such a mess, but they needed to calm down the inflammation, so he has been on adult dosages of prevacid since then. So they want to see if that inflammation is better. 2) Because the papaya supplement works they want to do this "enzyme challenge" test. I am not exactly sure what it entails but essentially while he is asleep they try to stimulate his body to produce some certain enzymes, and if it doesn't then they can then give him the enzymes to help him. So now we just wait and see when they get him scheduled. I so wish that we didn't have to go through this with him again. It isn't a terrible procedure and he will be completely fine but I still get anxious. When they did the colonscopy and he had the big hematoma formation and hten the hemorrhage it was terrifying. I know that that isn't typical but it is so scary to me to think of that happening again. So please pray for him, for his doctors and for a healing for this terrible belly pain that he is having. He has actually lost a little weight now too:-( He is 43lb8oz.

So now I have to find him a new Curious George. He had this itty bitty George that we had always brought to hospital appointments/admissions etc. Unfortunately I think we lost it after his surgery last year. And I haven't been able to find a replacement yet. But now I NEED to find one for him. That will be my mission in the next few days to find him a George to bring with us.