Monday, February 27, 2012
So Preston and I left on monday morning. He did so well. My mom drove us in to the airport and dropped us off. Everyone at the airport was so helpful when they realized I was travelling alone with an infant. On our first flight Preston and I had a window seat next to a man. I was so self conscious as I was nursing him. I actually latched him on prior to take off and he fell asleep. He slept for nearly an hour! Then he was awake for a bit and was actually pretty cranky. Again latched him on and then he fell asleep and slept until AFTER we landed!!!
Sunday, February 26, 2012
-So Preston and I are leaving in the morning. We are flying down to NC to seem y brother Dennis and his wife before he is deployed to Iraq. My brother doesn't even know we are coming. I can't wait to surprise him. I am praying that Preston does exceedingly well for this trip. Please just pray for him to be comfortable and enjoy it. I fell at work on saturday morning:-( I slipped and fell right on my bottom from the black ice, and man am I sore. I am so thankful that nothing was broken. -next week I am going to start feeding Preston some baby food! I am super excited to do this -we celebrated my niece Danay's birthday today it was so fun!!!
Wednesday, February 22, 2012
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...
Tuesday, February 21, 2012
Today we had the wonderful pleasure of meeting another "IVIG family". IT is always so comforting speaking with someone who just "gets it." I am surrounded by amazingly wonderful friends and family, but they don't truly understand what it is like to have a kiddo that has an immune deficiency. They look at you funny when you do things a certain way, or maybe exclude you when they are doing something, or feel like you are "babying" your immue deficient child. They always mean well, but because they haven't walked this road, or experienced the things we have experienced with our sick kiddos they don't understand. So I really cherish the times when I can talk with another mom who gets my heart/feelings. And today I had that opportunity!!! We had to take quite a little drive to get there, and then didn't have nearly as long to visit as I would have liked but it was a nice start to a friendship that I am definitely looking forward to building. Sam and Matthew were instantly playing together and had a fantastic time. Their oldest child Tori (a teenager, I think 15) was wonderful to Sophia and played with her, and then Sharon the mom and I got to visit and "compare notes per se." It was so wonderful to share our faith as well as talk about these medical kids. I am looking forward to spending lots of time together in the future.:-)
Monday, February 20, 2012
PS: JT commented on my post the other day, and if you are him could you please email me? firstname.lastname@example.org I would like to hear more about your EoE if you wouldn't mind sharing Sam had IVIG today. Can I just say how blessed we are to be able to go to the hospital where I work and have my friends take such good care of him while we are there? I love these ladies so much! It was quite the fiasco getting our hospital to allow us to come but it has been such a tremendous blessing to not have to travel to Boston all the time for it. They got the IV in on the first try! What an answer to prayer. They set up the Wii for him and he just played throughout the infusion. Preston just hung out with us and had a blast squirming all over the bed.
Saturday, February 18, 2012
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.
Thursday, February 16, 2012
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:-)
Tuesday, February 14, 2012
Oh how I love my precious kiddos. God has blessed me with these three amazing children (and the one in heaven). I don't at all deserve these childen but am so very thankful for each of them. It seems as though the boys health wise struggle more than Sophia. I don't know why that is? But we already have had some pretty big scares with both of these handsome little boys. Each time I try to focus on the fact that they are in God's hands, but sometimes when it is something really scary I struggle with staying focused on that. Two weeks ago when we were preparing for Sam's scope I was TERRIFIED that he was going to have a complication, or bleed. I was beyond scared. I told his doctor how anxious he was and he jokingly said that he was too! The last time Sam had had a colonoscopy he developed the hematoma and hemorrhaged!!! To say I was anxious is the understatement of the year. But I kept telling myself that God had him in His hands.....And then when Preston first had the blood in his stool, and then we were referred to a neurosurgeon? Again I was completely terrified. It has been such a rocky road at times with these kiddos. But as I look back on each situation I am reminded of how God was there through it all. God placed people in our lives that are here on earth that can help DESTRESS us, peopld that uplift us in prayer, people that take care of the other kiddos, people who change their work schedules to make things easier. People who provide food, or help with errands. People who do research and share it, making things not so very overwhelming. I am so blessed to have these boys! I am thankful for the struggles because they have stretched and strengthened my faith. I have had to rely on God so completely, and I have learned so much about His love and willingness to carry us in times of weakness. I have been given amazingly Godly women in my life that strengthen and encourage me in this walk of faith. I am so blessed!!!
Sunday, February 12, 2012
We are so blessed to go to such a wonderful church that is so kid oriented. There are countless activites and programs for kids at our church. Since our kids are on the young side they haven't participated in too many of the activities yet. But they both are getting to do something new and exciting this year. Sam will be doing a pine wood derby race in a few weeks. And this past weekend Sophia got to have a daddy daughter date night. The church prepared a delicious meal and dessert for the dad's and their girls. And then there were crafts and games as well. So so fun!!! Matt unfortunately doesn't like having his picture taken much but I got a couple of them before they left for their little date:-) Sophia was beyond thrilled to be doing this special evening with her daddy. I was a little sad that I couldn't go just to take more photos. But I am hoping to get some more from the actual dinner from some friends that were there. Here is my little beauty all dressed up for her daddy:
Friday, February 10, 2012
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:-)
Thursday, February 9, 2012
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
Wednesday, February 8, 2012
Phew what a day it was!!! First off my mom was supposed to come with me today so that I didn't have to go alone. I HATE going to major appointments by myself. My mom almost always goes with me, once when Sam was about a ayear and a half I said that it was no big deal for her to not go with me, well of course that was the day that they thought he possibly could have leukemia, and I was ALL BY MYSELF. That drive home was absolutely horrible, since that time I try really hard not to go to new appointments or procedures by myself. I would hate to be alone to get difficult results. But alas, my mother woke up very sick this morning and therefore was unable to join us. So it was Preston and I.... We got to the pediatric MRI area, where they had no record of us coming in today...they sent us to another area and these people were wonderful. They explained everything that was going to happen, asked me all kinds of questions and allowed me to ask whatever I wanted to. If you haven't ever had an MRI or haven't seen one, it is this huge round machine with a little tube that you slide into on a hard table. So what they did to PReston was have me lay him on the table with his head between two blocks and then they taped across his forehead to the blocks. They also rolled all kinds of blankets around his head and then put this cage like contraption over his head. I then inserted his little wubba nub in through the cage. They swaddled the rest of his body but then had me LAY ON TOP of him to help hold his chin in place! It was nuts! I am so thankful I wasn't claustraphobic because that would have been awful....And this is what we got today:
Tuesday, February 7, 2012
Please say a prayer for Preston as tomorrow is his MRI. WE have to be there an hour early, but other than that they really haven't told me too much about how things are going to go tomorrow. I do know that we will have a doctors appointment about two hours after MRI and the neuro surgeon should be able to give us results. So please be praying for my little guy, and for me as I am trying to not be anxious, and to keep my eyes focused on God. I am reminded in this stressful time of an amazing song....
Ugghhh so a couple weeks ago when we went and saw the GI doctor for Preston, the GI recommended getting him seen by neuro, because of several factors: large size head, almost completely closed fontanelles, and the fact that he did have meningitis. He said all those factors together were concerning to him. So we went yesterday to the neuro. She was super nice, she wasn't at all concerned with the closing of his fontanelles. She did say he has a large head, and because of the meningitis and some complications that can arise from it, she is recommending that they do an MRI of his brain! GULP! So here we go again! The MRI is scheduled for this wednesday so please be praying for him. I hate to complain because I am so incredibly blessed but sometimes I just wish just once that things could be easy when it comes to my kids....for example: Preston has cold. Why does it have to turn into an ear infection and bronchiolitis? He has a bigger head, but why can't it be just that he has a big head? WHy are we now checking for hydrocephalus? And don't even get me started with Sam! Sorry I am so overtired and overwhelmed and just wishing that for once it was a true NO BIG DEAL kind of thing....
Sunday, February 5, 2012
Goodness things have been absolutely crazy! I couldn't get back to this blog to save my life last week. So lets see....thursday Preston woke up having a little bit of respiratory distress and so I brought him to the doctor, he ended up getting diagnosed with bronchiolitis and an ear infection in the right ear. And was started on zithromax. I worked the weekend and was thankfully about to bring him with me, as he was being a real stinker about the bottle when he didn't feel well. Soph had PT and did really well. She is working really hard and seems to be doing really well. And then of course she complains that her legs hurt afterwards but I am hoping that she is getting strengthened thus the pain should hopefully stop soon. We sadly also found out that her preschool will be closing after this year:-( I can't even begin to say how sad I am that she won't get to go there next year. We are looking all over for another Christian preschool to send her to next year. Sam has had a good week last week. He is developing a little bit of respiratory symptoms so praying that it doesn't progress to anything.... The weekend was crazy! We had two birthday parties to go to, and then we also went to our friends house to watch the superbowl. It was a crazy busy fun weekend. I haven't had a chance to post the pics yet but I will.
Wednesday, February 1, 2012
My tiny little peanut is five months old! And is doing so well. We certainly have had some health scares with him, but I am so thankful and happy to say he is growing and happy. Since the dairy/soy free diet he has seemed much more content and less restless. He has been happier, and when he does fuss he is easier to console. He is babbling tons these days and blowing lots of drool bubbles. He is laughing and squealing. He LOVES to watch Sam and Soph run around and play. He continues to like his hands better than any of his little toys. He loves to chew on his fingers. Since I have gone dairy and soy free, I had to throw away all my frozen breast milk that I had:-( I was so sad to do it but I didn't want someone to accidently give it to him. So then I didn't have a stock pile of extra milk in the freezer, so he actually got a little of the alimentum formula this week. He actually doesn't seem to mind the taste too much but he would certainly rather get it from me than a bottle. But I am so thankful that he will take it. We are praying that this will resolve the bleeding issue. He is getting to the point where he doesn't really like his swing anymore. His favorite things are things where he is sitting straight up, such as the exersaucer, bumbo, and we even put him in a jolly jumper at my mom's. He wasn't completely sure what to do but he stood in it for a couple of minutes. He seems to have a little bit of a cold developing so we shall see how it goes....Please pray for him.