IVIG, Preschool conferences, and a trip to the ER

I am praising God that Preston's IVIG went so fantastically well today! They were able to get the IV in on the first try. He fell asleep shortly after and then slept throughout most of it. He was fairly miserable on the way in to Children's today, but thankfully he seems to be feeling much better. I went to Sophia's preschool conference today. Her teacher was very happy with all the progress that she has made. She feels as though she will do very well in kindergarden and has no concerns with her except for a warning about how much of a perfectionist Sophia is. And that that perfectionism prevents her at times from trying new things in fear of not doing it well. She stated that she has gotten better at being willing to try new things but that she still struggles with not wanting to, because she wants to be really good at everything she does. I shared how I feel as though she doesn't want to disappoint people if she doesn't do something to her liking. All in all a great conference. I can't believe my baby girl will be starting kindergarden in a few months. My poor friend Sara had an anaphylactic reaction to pudding today and ended up in the hospital. I went and sat with her for a little while, just to keep her company. Poor girl! Please be praying for her, her doctors can't seem to get a handle on her allergic reactions and they keep getting worse.

Reaction to IVIG

Well it would appear that Sam has had another reaction to an IVIG product. I am not sure what will happen now. There are now three products that he has reacted to. I am not sure how many more there are to try. Last night his cheeks were really splotchy but he had no fever and seemed ok. But today his cheeks as well as the back of neck, throat and multiple other places on his body have become rashy. He has complained of that the rash is burning and stingy as well as very itchy. The immunologist is allowing me to use a prescription hydrocortisone cream on it, but due to the platelet problem I can't give him Benadryl or any other antihistamines. Poor guy! He is doing ok right now, the hydrocortisone has helped quite a bit with the itching. I am so frustrated. I really was feeling good about where he is right now. With all that is going on with Preston, things have been fairly stable with Sam. The GI stuff always seems to be an issue. But yesterday at IVIG he had some elevated blood pressures and then last night he had a horrible bloody nose. I contemplated bringing him to the ER because the bleeding wouldn't stop, but after about 45 minutes praise God it did. So now it looks like maybe all these separate things were maybe a reaction.... We will be speaking with his hematologist and his immunologist on Monday. And prayerfully between now and then he will continue to have lessening symptoms and by Monday he will be back to normal,

Uggghhhh!!!!!

So it would appear that the person who hit us is responsible for replacing our carseats, which is totally awesome. But they have to BE THE EXACT some ones, fabric and all.... Well they don't make the same prints of fabric! They only make the pattern typically for one or two years, before a new print replaces it. So I am in the process of figuring that out. I guess you could say I am a carseat snob. We spend SO MUCH time in the car, driving into and out of Boston Childrens, Mass General etc that I want my kids to have super comfy seats, that also have very high safety ratings. And I just don't have four hundred dollars right this second to go buy new ones. So please be praying that this guys insurance comes through quickly. For now I can use the extras that were in Matt's car, but totally not nearly as comfortable. Preston had his 15month well child check up today. He is 22lb 11oz and is 31.5 inches long!!! He is growing amazingly well. Unfortunately the doctor thinks that he probably has a sinus infection (I do too) but becuase of his C diff history we both are very hesitant to treat with antibiotics at this point. So we are going to try some antihistamines and allergy medicine to hopefully get him better. He also has been puking again the last few days, and I think the reflux is worsening, not sure if it has anythign to do with post nasal drip or not but in any case it is waging a war on my son again :-( GI is having us restart the reglan, but everything else is going to remain the same for now. We shall see.... This is a picture I took of him the other day at my moms...

Sophia had her little Christmas presentation at school today. I am not going to lie it was cute but I was definitely a little sad watching it. With Sam and last year with Sophia we were at a christian preschool, the Christmas program was all about what is really important: Jesus.... But in a secular school it is all about Santa :-( Sophia did a wonderful job but it wasn't what the real Christmas is all about. She was so cute and animated during her program. So fun to watch her little personality. Preston had a blast at her school too.

And then tonight she wouldn't eat her dinner and said she had a fever, and SHE DOES!!! I am so sad about this! I was really praying that this year we would all be healthy and that Christmas would be healthy. Praying that that is the case. Poor girl. Tomorrow I am headed into MGH with Sam for an appointment with a new doctor, this is an ENT, the coordinated care docs are thinking that his adenoids possibly grew back :-(

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?

Eosinophils and GI Plan

SO I sent Sam's doc an email yesterday regarding his recent abdominal pain. He essentially wants us to remove the eggs again from his diet and see how he does. So that is the plan for now. This is such a roller coaster ride. I still don't believe the eosinophilic colitis is Sam's actual problem, I believe it is a symptom of something bigger:-( It is so frustrating when the doctors say things like "well this isn't really typical, but we all know that Sam doesn't play by the rules." Yeah I get that my kid is complicated and doesn't fit the typical EOS mold, but that doesn't mean I don't want him better. I so desperately want him to not have pain so often. To be able to digest food, and not have discomfort. To start gaining weight and not be so skinny. To have a healthy glow to his skin. To have energy and a good well balanced nutritious diet that he enjoys....etc etc. So for now eggs have to come back out, we will see if that makes any difference. I don't have a really clear understanding of how long I am supposed to wait for this to get better.... But for now please keep him in your prayers

MORE DOCTORS

Gosh I feel like this roller coaster is starting to go too fast again. In January when we got the eosinophilic diagnosis I was caught off guard, but then in changing the diet and things improving I feel like we have gotten into a grove again. But in the last week or so Sam has been having low body temperatures again (in the 95 degree range) and it has been warm. So now we are going to be getting in with MORE doctors. We did this low body temp thing before, when he was just stopping breathing at night, and so I am anxious becuase of that. His primary talked about it being an infection causing the low temp, or possibly some type of endocrine disorder. So I guess that that will be our next course of action. I know that God totally has all things under control but still I am overwhelmed. Something also is going on with PReston GI wise. I am trying to figure out how much of the eosinophilic stuff is hereditary. He has had more than his fair share of GI issues since birth. But this past week he has been puking (alot) and I think refluxing again. Which GI seems to think is unlikely that it is reflux because it doesn't usually get worse again after six months. I spoke with the on call doc over the weekend who recommended mylanta to see if that seemed to help, I am on the fence about whether it did or didn't. He is waking up frequently at night, coughing, spitting up, burping a ton and now three times has had this respiratory type symptoms that come on quickly and resolve quickly, he gets wheezing and congested and then it clears after like ten minutes. Weird... So I called GI this morning, they want me to wait out the week with him like this to see if anything changes. To see if it is a "post viral" delayed emptying of his stomach. Meaning maybe he had an illness and it kind of slowed down the motility in his stomach, so give it a few more days to see if it gets better. Sam seems to be ok today, and he had a little bit of egg yesterday! I made homemade brownies for him, with his ingredients, and eggs. He had two within the course of the day and seems fine! I am so happy about this. I am super frustrated though because I feel like I always have to be the bad guy with him:-( I made the chocolate raspberry cake for Matt for Father's Day, and Sam wanted a piece. Of course, I would love for him to have a piece, but I also would love for him to not be sick or have GI symptoms. But both my MIL and Matt wanted him to have some! It makes me so crabby! Yes they ask so he sees them asking me, if I say no I am looking like I am just being mean, he doesn't understand why I don't want him to. If I say yes then I am telling him that it is ok to eat whatever he wants and that we don't have to do what the doctor says, but beyond that I am also telling him that he doesn't really need to follow a specific diet, so when he is away from me then what will he do??? Uggghhh! So frustrating! On friday I watched my friend Megs kids (3 of 4). We had such a fun day. Ben and Josiah are six and are great friends of Sams. He absolutely loves playing with the boys. Gracie is eight I think:-) She was such a little helper that day. She did so much to help and keep all the younger kids happy.

Uggghhhh! Eosinophilic Colitis is SOOO COMPLICATED

SO I totally don't love it when the doctors responses to something that is going on with my kids are "Hmm interesting." "That's suprising." "I wonder why?" So they were really surprised by the most recent biopsy results that they had after the dietary changes. They are also wondering what dietary changes have made a difference and what ones haven't. They are also wondering about the antifungal medication he was on and if that had any affect on the EC. So essentially this appointment today led them to say that hey lets give him back one thing that we have taken out of his diet and see what happens. They said to call in six weeks (sooner if symptomatic) and let them know how he is doing. So out of the list of things he has been off of, they let him choose one thing to add back into the diet. So he picked eggs. I for one am thrilled that he picked eggs, because now we can have breakfast as a family again, with eggs and not have him feeling sad about it. But I don't love the fact that they will add and take out foods over the next several weeks/months and want to keep rescoping him:-( I am in such the beginning stages of learing about EC that I don't even know if this is the typical course of action, or if this is just an MGH specific treatment plan. If you are out there and you have lots of experience with eosinophilic colitis, how often is your child scoped? What are the parameters used to determine when it is necessary? Also my next question is: is this hereditary? My youngest is 9months and has been diagnosed with a milk protein and soy allergy. I came off those things so that I could continue to nurse him. He has been a whole new baby. When I was speaking with them today about Sam, I asked about it. One of the nutritionists made the comment that alot of kids with milk and soy allergies go on to have EoE! I hadn't heard that before and am obviously praying that God prevents this from happening. But didn't know if anyone has had experience with that? Sam was 46inches tall and 43lb3oz today. He has lost weight since the last doctors appointment there which was about a month ago. I feel like we are in another one of his crazy cycles becauss of the fact that he was late for IVIG and I think he just has a generalized feeling of sickness. SO when that happens, he is whiny miserable and eats poorly. SO I am praying that since he had his IVIG on tuesday that he turns around and starts feeling better. I am so excited that we will be able to do the IVIG locally again. I am just trying to get everything all situated with policies and procedures for this new IVIG product. Gosh I worked last night in labor and delivery and assisted with a delivery. Even though I have been a nurse for nearly TEN YEARS now, it never ceases to amaze me the miracle of life and birth. And not only in the maternity side of things, when I have worked pedi or in the ER, I am amazed ALL the time about how miraculously we are made. Heres some cute pics of my munchkins....

Cold Vs Allergy???

My goodness we have coughing and boogies everywhere it feels like. PReston and Sophia have been suffering with what I have felt like was allergy symptoms since last friday. Soph has not had a fever, but Preston has had intermittent low grade fevers. They are both drinking and eating ok. But they just have so much mucous. Preston has been a complete cling on, he wants to be nursing almost the entire time he is awake which is exhausting. Yesterday poor little pumpkin woke up with his eye stuck shut from all the mucous. I have been going back and forth for months now about wondering if his immune system is not functioning well like Sam's didn't. It just feels like he is ALWAYS sick or constantly get over something or brewing something. I keep going back and forth about bringing them to the doctor. The coughing is just atrocious. Poor Sophia has a tough time catching her breath when she goes into the coughing fits. I did call the on-call doctor last night and got a recommendation for something to help her, but still I wish she was just better. I guess we will see how both of them are tomorrow.

A pic of Mr P with his yucky eye!!! My friend Shannon took some amazing photos of my boys the other day. It was a super quick short little session, but as always she got some amazing shots, I don't have the CD yet, so I am just bringing them over from her blog. But I am so excited they came out so well. I can't believe my little Sammy is going to be six in a few weeks, and Preston nine months!!! Time sure does fly when life is so crazy:-) But I wouldn't change a thing. WEll I would change Sammy to make him not have to go through so much medically....

More allergy testing

So I heard back today from the immunologist/allergist's office about more allergy testing. We will head into Children's on March 12th for "patch tests." They actually apply these patches to Sam's skin that are left on for 48hrs to determine if he has a slower response. The skin prick test is an IgE mediated response, but since he didn't have any reactions to the skin prick tests they will move on to see if he has any slower reactions. Sam and Sophia actually slept over my parents last night which was great. THe kids couldn't wait to have this sleep over and had a wonderful time. Sam actually got hit in the face while there and had quite the bloody nose, but it did stop bleeding so that is good. He is definitely dragging today, I am just hoping it is because he stayed up a little later than normal at moms, and not that he is getting sick. Preston isn't feeling all that well either:-( Last night he had a temp, and was pretty fussy during the night, and I contemplated bringing him to the doctor this morning after I got home from work, but he seemed better. But once the night got here he has gotten irritable again and is running a low grade temp. I guess we will see how it goes. If he has a temp again tomorrow I may just call the office and see what they think since it will be the third day. Even despite his crabbiness this little guy loves his bath...

Could you please say a prayer for my sweet friend Meg? She had pneumonia a few months ago and is experiencing similar symptoms again. Thank you so much!!!

Allergy Testing and Eosinophilic Gastroenteritis

Ugggh so poor Sammy had the allergy testing on friday at Boston Children's with our wonderful immunologist/allergist Dr B. We really like him and he has been so good to us. We also discussed the proposed trialing off of IVIG next month, which he is pushing back:-( I am not surprised but am disappointed. We will touch base in May and he will decide then if we can stop the IVIG for the summer to see how he does. Sam was 44lbs!!! As far as the allergy testing went, they injected him with 32 different (common) foods on his back to see if he reacted to them. I kept praying that whatever he was allergic to would be something that wouldn't affect him too terribly, and that it would be something we could easily take out of his diet, and replace with something equally as yummy. Everything I have read about EG (eosinophilic gastroenteritis) has pointed hugely to the correlation of food allergies. So all I kept thinking was that when we did this testing he was going to be allergic to everything: dairy, soy, gluten, nuts, beef, eggs, fruits etc...SO IMAGINE MY SHOCK WHEN ALL OF THE ALLERGIES WERE NEGATIVE?!?!?!? SO I am absolutely completely baffled at this point. I know that God is in control and that He has the perfect plan for Sam. But what that plan is I don't know. It totally caught me off guard seeing everything be negative. I don't know what this means though, because I don't know how we can make him better or treat this, if it isn't taking the foods out of his diet....So please pray for my boy, and for the doctors caring for him that they would have wisdom in deciding how to treat him. Although we have now had blood and skin prick testing that are all negative we are now going to try patch testing. I am awaiting the scheduling department at Children's to schedule that for us. That is when they place the allergen on a little disc that they stick to his skin for 48hrs to see if there is a reaction after a prolonged period of time.

If you look closely you can see the 32 pokes on his little back!:-(

Super Sammy's response to hearing that the testing was negative. And you know what he said: "I prayed that all the tests would be negative!". Love seeing his faith blossoming:-)

Allergy and Immunology

Tomorrow we start the allergy testing for Sammy. Please pray that we can get through this easily and that it isn't too stressful for him. I am praying for an answer but also praying that the cause is not something that he really loves to eat and that those particular foods can be easily eliminated from his diet. It still seems so strange to me that we have had four rounds of allergy testing, and never actually gotten the positive results that would have helped us resolve the belly issues. It stinks to have gone all this time feeding him something that could have been causing him pain...praying that tomorrow is the start to healing once and for all. Preston is feeling a little under the weather again:-( Not sure exactly what is going on but he has been having low grade temps off and on all week. He acts generally happy and content for the most part, but he has these really irritable periods. If he is febrile again in the morning I will probably try to get him seen by his PCP before she closes tomorrow afternoon, depending on how long Sam's appointment goes. I have been so sad that Sunshine Garden (where Sophia goes to preschool) is closing at the end of this year. It has been such a blessing to send Sam and now Sophia there. So now that SGNS is closing I have been looking for another Christian school and praise God I enrolled her in one today! It is called Bethany Christian Nursery School. It has a good reputation, small classes, and a great curriculum most importantly that is based on the Bible. So very thankful! In other school related news I received word today that the district has approved my school choice request! Again God has answered my prayers. I don't have many new pics this week to upload, but thankfully I got a great one of Matt and Sophia together from Daddy Daughter Date night from my pastor:-)

And here is a cute one of Mr P, just being his cute little self...

"I prayed for this child, and the LORD has granted me what I asked of Him." I Samuel 1:27

Eosiniophilic Gastroenteritis (MORE)

I am still trying to wrap my brain around this diagnosis...It is such an answer to prayer to finally know what we are dealing with. But it is also so very overwhelming as I try to figure out how we are going to adapt to it. It is also hard because he does have some emotional attachments to some foods, that he will no longer be able to have. I had a very lengthy conversation with his GI doctor, Dr Zella today. Can I just say what an aswer to prayer he is? It is so wonderful to have a doctor who actually takes the time to listen to their patients, values their opionions, and actually works with them to make the best possible plan. We had a discussion about past biopsies that were done, and why this hasn't shown up before, we talked about the allergic component and how Sam's allergy tests have always come back negative....we talked about treatment, long term care/outcomes, and a variety of other things. I feel better (kind of) then I did, or at least feel a little bit more like I know what we are dealing with, but it will be really good to talk to the specialists next week and really get a more concrete plan. I can't event tell you how blessed I was today. I got a message on the lovely facebook from a sweet friend. Saying how she wanted so desperately to help but didn't know how. She then went on to explain that she requested books to come to the library about strict food restriction diets, and has been doing research for what and where to buy things for Sam!!! I am still shaking my head and smiling. What a tremendous blessing! I do feel so overwhelmed and kind of don't know where to stop, but Steph has taken the lead. So we will see the head of GI at MGH next week, as well as a specialist that deals with eosinophilic disorders. I can't wait to get those appointments in. I have been doing a lot of reading and building my question lists. It will be nice to have more answers and less questions. Prayer requests: -that Sam will have no difficulties adapting to the new diet -that he will have QUICK relief from symptoms and realizes he feels better because of what he is eating (the doctor said it could take a few months for him to feel better) -that we can afford to feed Sam all of the new foods, that already seem so much more expensive than what we are used to paying -that the specialists can isolate exactly what has caused this and then that we are able to reintroduce foods back into his diet -that I have the energy to make the new foods, do the new shopping, go to all the new appointments, and be the best mom that God wants me to be Sophia and Matt went to daddy daughter date night at church tonight, I will let you know all about it tomorrow:-)