IVIG

They both REALLY ENJOYED some popsicles!!!! Sam had his IVIG today. It went ok. For some reason he was very anxious and jumpy today. His veins also were pretty poor. But I am praising God that Carol got it in on the second try. And that all went well. Sam is such a trooper and he was so good to Preston today while he was there. It is certainly becoming much more difficult having Preston with me now that he is a runner. He feels completely comfortable running all over the place and doesn't like to be confined. But all in a all a good day. Sam had some elevated blood pressures today but praying that it is just a fluke. He is starting to gain back some of the weight that he had lost as well. He weighs 46.4lb and is 48inches tall! Getting so big

Updates....P's 18 month check up

So hopefully soon I will have my computor back so I can catch my blog back up.... But for now Sammy is sick. I brought him to the doctor today, and essentially he has lots of swollen lymph nodes, a red throat, lots of fluid in his ears, nasal congestion and sinus congestion. Due to his C diff history we aren't starting antbiotics until he gets worse. So for now he is fairly irritable and crabby. And due to the platelet issue I can't give him most decongestants or antihistamines, and all I can give him for the sore throat is tylenol and he is saying that that doesn't help much. So prayers greatly appreciated. Preston is officially 18months old! I still can't believe how far we have come in the last six months with him. It has certainly been a roller coaster ride, but I am so blessed to be on this ride with him. We are surrounded by wonderful family and friends who have supported us and helped in countless ways throughout the hospitalizations and doctors appointments. We have amazing doctors on our team. And so many more wonderful people loving on this special guy of mine. He is really starting to take off with his babbling. He now says: Mom, momma, mommy, dad, up, hi, want, more, ear, eye and a few other random things he says once and then not again. He knows many of his body parts and points when asked: head, hair, eyes, ears, mouth, teeth, nose, tongue, neck, belly, arm, fingers, leg, toes, knee. He is starting to recognize the color yellow. He absolutely loves playing with any child, but especially with Sam and sophia. He is a climber for sure, and has taken to jumping now too. He is always falling and bumping his head on something, the poor guy. Eating continues to be a challenge, some days he eats ok, and some days are a complete flop. I am not sure if it is due to feeling poorly or if this is just a phase. The fecal transplant is still a possibility but it isn't guaranteed yet. We just have to wait and see how he does once we stop the several months of antibiotics. His weight today was 23lb 12oz and his height was 33inches. Tomorrow both boys are following up with GI. It will be an interesting appointment, as Sam has been having some stomach pain again, as well as two episodes of blood in his stool recently. Prayers for safe travels please as the weather isn't supposed to be that great :-(

A trip to the doctor for Preston

So I brought Preston into see Dr V today since the diarrhea has now been going on for 9 days and the fever for a week. She said he looked unwell, and he has lost some weight :-( since last week when I took him. She isn't sure what is going on. His stool still has blood in it, she sent it off for all kinds of tests and studies, and was also going to be calling the specialists in Boston to see what their recommendations would be. Please be praying for my boy :-) Thanks so much! I know God is totally in control but I am anxious right now. Praying for him to feel better and be happy and growing again. His weight was 22.9 today, and was 23.4 last week. On a happier note, the kids had a snow day today and had a blast playing out in the snow. I wish I could post pictures, hoping to get my computor fixed this coming weekend. I also had the priviledge of getting to know a new friend better! It was so fun learning about her family, and the journey that God has brought her on. I am always so blessed to hear of God's faithfulness in someone's life. THANK YOU for sharing!!!!

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 :-(

GI for the boys

We went and saw Dr Z at MGH on thursday. He was thrilled with how well both of the boys are growing! I am just so blessed by this news. It has been such a challenge with Sam for so long for him to gain weight but I am so grateful this growth. He is now 46lb and 46.5 inches tall. We are going to try to start decreasing his reflux meds and see how he tolerates it. IT would be awesome to get him down to only once a day for the reflux meds. He was thrilled with Preston's growth as well. He has gained a pound a month since the intestinal infection! He made up for all the weight he lost. He now weighs 22lb 10oz and is 31.5 inches long. GI is thinking that Preston is having severe reflux issues from what I described to him. Our Primary is thinking that it may be some type of obstructive issues like Sam had and is thinking that we need to do a sleep study. I am not sure either way.... I definitely think the reflux is out of control, and he has now started on nexium instead of the prevacid, so I am praying that this helps him tremendously. He is now sleeping with his neck hyperextended, but I am not sure if this is an opening/protecting his own airway type movement, or if this has something to do with post nasal drip since I do believe he has some type of URI type thing going on... NOT SURE :-( So the plan for now is to try the nexium, into next week and see how he does. We see our PCP on tuesday so am praying that there will be marked improvement by then.

Here we go again....

Sam had his follow up with the Coordinated Care Clinic at MGH yesterday, and he had IVIG on monday. He weighs 46lbs and is 46inches tall!!! Growing so well now!!! IVIG went phenomenally well. IV in on the first try, no reactions and we just flew threw the infusion. We were so thankful to have Auntie Sara there with us. It was a family affair this time. Daddy was there too!!! Today at Coordinated Care they were asking all kinds of questions and I was just going along answering hte questions, not really thinking about where they were headed. After all the questions they think that there is a possibility that Sam's adenoids have grown back. Now the decision to have the tonsils and adenoids removed two and half years ago, was a terrifying decision. And one that we prayed and prayed about. Becuase of his bleeding disorder this was a BIG DEAL. Praise God all went well, we did have some bleeding but God took great care of him. But now thinking that there is a possibility of the adenoids needing to be removed again, I am so anxious. For now I have to make appointments with pulmonology, an ENT, and schedule a sleep study. Crazy!!! I know God will walk this road with us, but I am still trying to wrap my brain around Preston and IVIG.... We had my in laws over the other day for dinner. It had been my father in laws birthday. My kids absolutely adore him and were climbing all over him essentially the entire time he was here. They were fighting over him at the dinner table. He is a rough and tumble grandpa and the kids love it. They also like snuggling with Grandma :-)

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?

Cock Sackie virus

WEll poor Mr Preston is still sick. I finally brought him to the doctor today. She has seen lots of the cock sockie virus around lately so apparently my little guy had to catch it. The most common variation is the kind that causes "Hand foot and mouth disease" but what Preston has is a little different. The timeframe for illness is 10-14 days so I am praying that we are coming to the end, please be praying for his hydration comfort and healing. And that our house could get some sleep! Thanks!!! Oh guess what this BIG GUY is 19lb 4oz!!!

6 Year check up and a bike accident

So Sammy had his six year check up with Dr V the other day. He is now 44lb (20kg) and is 45 inches tall! He is essentially in the 50th percentile for height, and a little under it for weight. So he is doing awesome! There were no vaccines or bloodwork. They did do hearing and vision and he passed both of those as well. In the past year Sammy has learned to read, and write all his letters. He is sounding out words constantly, and where I used to spell words to Matt to tell him something I now have to change my tactic because Sam spells it back and figures it out. He has become more interested in games, and some favorites are matching, and Scrabble junior. He also has gotten very interested int he Nintendo DS that was given to him by my sister. As well as his leapster. Legos are somehting he is continuing to develop an interest in. He is really awesome at following the step by step instrutions. But unfortunately gets really frustrated when he cant figure a word out. He has become more creative, and does tons of drawing and creating things. I love seeing this side develop. He is swimming so well now too. He swims along underwater too. He has also become a little scarier for me:-) He is becoming an adventurous little boy. In the past two weeks, he has gotten a second/third degree burn (he was at campfire and didn't obey the rules), a bike accident in which he smashed his face on the pavement, and has gotten stuck up in a tree!!! I have always said I just wanted him to be a normal little kid, but man I don't know if my heart can handle this type of stuff.

GI Update

Frustrated doesn't even begin to explain how I feel about todays GI appointment. In which the doctor said "I don't really care if he has a bloody nose all the time as long as his belly doesn't hurt..." in regards to the fact that the hematologist recommended taking him off a specific medication that has a known affect on platelets. We stopped that medication (Periactin) a month ago, and since we have stopped the medication he has not had ONE bloody nose, whereas before he was having several a week. So essentially we MAY help his belly but we may also affect his platelets and cause bleeding....I feel stuck between a rock and a hard place. That being said I know that this is just small stuff, but to me today it is a big deal. I don't really want to be responsible for giving him medication taht I know affects his platelets, and I don't want to not give him medication that could prevent him from being curled up on the floor in the fetal position with pain. I know that God has all of this in his hands and that Sam will be ok. That God's plans for my little guy are perfect. But I just wish I knew what that plan was. In other news he is 43lb 2oz again! So praise God he is gaining again! And he is almost 48inches tall!!!:-) Preston also had a GI follow up today. We essentially are discharged from GI for Preston! Rejoicing!!!! GI said to slowly introduce dairy and soy on a specific schedule and as long as that all goes well then we don't need to go back. Preston was 18lb 8oz and was 28 1/4inches long!!! Tomorrow is IVIG for Sam so please pray that the IV goes in easily and that there are no reactions I am just so thankful for these two:-)

10 months old

Oh my world, my little munchkin is 10 months old! I can't even believe it! It feels like this year with him has just flown by. He weighs eighteen pounds now (I brought him to the doctor last weeek) as he had had cold symptoms and goopy eye for over a week and a half. The doctor prescribed some erythromycin to cover if it was conjunctivitis and after a few days when that didn't work she has prescribed Zyrtec. It is debatable whether or not it is helping. At ten months, Preston is shaking his head no, clapping, blowing raspberries, playing peak a boo, and doing his own special version of crawling. It is the cutest thing ever. He can get from sitting down into the crawling position, and sometimes prefers to just lay on his back and look at the world going by. He continues to love his exersaucer and has tremendously strong legs because it seems like all he does all day is kick his legs or jump. Sleeping is still a hit or a miss type thing:-( He nurses around 630pm or so and then goes to sleep. He then wakes up typically between 10 and 11 and nurses again. After that we try to wait until at least five to feed him again, but that doesn't always happen. He has started rolling over to his left side when he sleeps, it is so cute.

Feeding him is so fun. Since I have been making my own I have been coming up with some weird suggestions, but he seems to really like everything tath I have made to give him. His favorite breakfast food is banana, strawberry, oatmeal. lunch and dinner has lately been a pureed chicken breat mixed with some veggie or fruit (apple, sweet potato, gr beans...) He has also really started liking feeding himself with finger foods. The gerber puffs have been a huge hit with all my kids. He also likes something called "Tiny Duck organics" and they make dried fruit pieces that he really likes. I also have tried giving him "mighty minis" popsicles which he absolutely loves...

And lets not forget our Army bear photos, I will post them tomorrow:-)

A trip to the ENT at Childrens

Sam and I headed into Children's this AM, after I worked overnight at the hospital. To say I was tired would be an understatement. And of course there was a huge function at Fenway Park today so traffic was attrocious. Anyways we had a great visit with the ENT. I went into the appointment thinking that they would have to put Sam under to pull out these tubes in his ears, more specifically the left one because that is the one he has been complaining about. But Sam was so awesome (as always) that Dr W just pulled both tubes out while we were there today! They were pretty disgusting. I can't say that I have even seen a tube AFTER it has come out of an ear, they certainly aren't anything nice looking, with the blood and ear wax all caked to them... BUT praise God they are out!!! Dr W is fabulous but he said he doesn't need to see us again and I am thrilled! It is great to not need a specialist any longer. I am so thankful we don't have the episodes where he stops breathing anymore. I am thankful that his tonsils/adenoids are out and that we never have to do that again. I am thankful that Dr W is a Christian and has faith. Sam was 42lb 13oz today, which means he has lost more weight:-( Not sure what is going on there....I guess I will call GI on monday and see what they think. Becuase he is down about 4 pounds, and when you are already skinny.... In other news, I am not sure if Mr P is getting sick or I was just the very fortunate recipient of his puke today. He really hasn't been puking in months, so when he does I am always leery of what could be the cause....is he having an allergic type reaction to somethign that I ate that is coming through into the breast milk, is his reflux getting worse, does he have a stomach bug, etc etc. Today it was absolutely repulsive right down my shirt and puddled in my bra. DISGUSTING!!!

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....

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!!!

Sinus Infection

So Little Miss Sophia has a sinus infection. I brought her in and that is what they said. She is on amoxicillin 3 times a day for seven days, and boy does she hate it. It is going to be a long seven days. I hadnt even thought to press on her face to see if that was uncomfortable for her. But Dr V just lightly pressed on her cheeks and that was very uncomfortable for her. We also got the stool study back that we did a few weeks ago! She did in fact have NORO virus. She had lost a significant amount of weight. Well 3 pounds is a lot when you are so little to start with. Prior to being sick she had been 33.6 lbs, and she got down to 30lbs. But today she was 31,4 pounds so we are moving in the right direction

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:-)

IVIG

Sammy got his IVIG yesterday. And after last months EIGHT sticks for IV access I wasn't at all looking forward to it! He as always is such a trooper, and the nurses are so phenomenal that he was happy to be coming. Even if he was going to have several IV attempts. He had four attempts today, which is definitely better than last time but I still hate that he has to go through it and that he has just had to become so accustomed to this. We got a wonderful "Therapeutic Play Kit" from the company that makes his IVIG. And so he loves to bring IGI V with us. We call him "I Gee" and Sam loves to give him his medicine too. We were also very fortunate to have a friend come with us which was wonderful since I had all three munchkins. Sam is getting so big! He is now 43.6 lb (19.8kg)!!!

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.

Sophia's MRI

We arrived to Children's around 11 yesterday and went right up to the MRI department. By this point, Sophia was complaining that she was hungry, and unfortunately since she was being put to sleep I couldn't feed her anything. She really tolerated being hungry well though, and I am so thankful. My mom came with us and gave her two new Christmas books so she was really excited to read those while we were waiting. I am so thankful that my mom was able to come with us. She was able to stay with Preston while I went with Sophia until she was sedated.

After about a half hour or so of waiting we were brought to the triage area. They did height weight and vitals on Sophia. She weighed 30lb 6oz! She is such a peanut. She was not at all anxious about any of this and was kind of enjoying all of the attention. Her hands were freezing cold so the nurse game her little hot packs taped to her hand, which Soph LOVED!!!

The nurse got everything ready for the IV outside of the room so Sophia didn't get scared. The nurse came in and had the IV in in about fifteen seconds! She was fast and Sophia cried for only a minute or two. But you should have seen the scowl on her face afterward! It was a little bit comical, every time the nurse came in she gave her "the look!" Thankfully at Children's they allow you to stay with your children before they undergo anesthesia. So I went into the room with her and rocked her in a rocking chair while they put the sedation meds through her IV. Then I laid her down and left the room. I am so thankful that I can be there with her, but it is the most horrible thing in the world, to watch your child's eyes roll back in their head, and go limp and lifeless in your arms. The test took a little over an hour, and then they came and got me and brought me to the recovery room with her, and she was still asleep. So she never knew that I wasn't there with her. She was so out of it, for HOURS afterwards!!!

Since she slept for so much of the day yesterday she was WIDE AWAKE when we got home at 6:15pm and stayed that way until after 11 last night! I was completely exhausted but she was not even a little tired. So we painted some giant Christmas pictures, and had some great one on one time together. And I finally made her lay down at 11:15 and it took her forever to fall asleep, and then she was up before 6:30 this morning!!!

And now we wait...I initially was told that we wouldn't have the results until we follow up with Dr Kasser after Christmas, but yesterday the nurses said that I could probably get some preliminary results before. I called the office this morning, and am waiting to hear back from the nurse or from Dr Kasser. Please pray for us as we await these results, that God will give us peace, and that whatever the results are we can walk forward in faith knowing that He is in control, and that we have nothing to fear.... John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."