Hockey, GI, blood pressure, and the transplant

Sam had a hockey game this week on Tuesday. He seemed fine prior to us bringing him to the game, but lasted only a few minutes before he was asking the coach to pull him out. When he came out he was saying that his stomach and chest hurt and was almost in tears. I feel so bad for him. I hate that he has such significant pain at times that it stops him from doing the things that he absolutely loves to do. Preston had a blast at the hockey game this week. He was running around all over the place trying to hit the ball with the hockey stick. On Wednesday I took Sophia into Tufts Floating Hospital for Children. Ever since we saw her pediatrician at the beginning of the month for the diarrhea, we haven't had much improvement so she sent us to GI, just to make sure all was ok. The drive into the hospital and the drive home was absolutely horrendous. But Sophia was so awesome. She usually gets nauseous but she did really well both ways. She allowed them to take her blood and she didn't even whimper or cry. She was polite and allowed the doctor to ask her all kinds of questions and responded appropriately. I am so proud of her. The doctor is thinking that things will just get better, but is checking some labs to rule out food allergies and crohn's disease. It will take a few weeks to get those results back. Since Sam's reaction to the IVIG and the high blood pressure because of it, we have been going to our pediatrician just to keep tabs on it. PRaise God yesterday it was fantastic. 90/60!!! I am unsure of if we still need to keep going now that it is back down to normal. It is hard to believe the road with Preston for the C. diff will be complete tomorrow! I am just so amazed how God has worked this situation so perfectly. We will be heading in tomorrow, leaving our house between 04:30 and 5 am. It will be a long day but I am already rejoicing in God's healing power in my baby boy. Prayers are greatly appreciated.

Hockey

Oh my gosh I screamed until I was hoarse tonight. Sam did AMAZING at hockey today. He scored two goals, and assisted with a third. The score of the game was 3-0. I am so sad that Matt had to work and didn't get to see him. I am rejoicing as he didn't have chest pain at all! Praise God!!! The doctor called today, I will bring him in to see her a few times this week for blood pressure checks to see if we have to go back to cardiology. But prayerfully we won't be heading down that road with him. The doctor also called about Sophia today, her repeat lab work is still abnormal. So she wants to check in with the GI doctor for Sophia now. She seems to be feeling better for the most part, she still feels cruddy sometimes but for the most part she is much better. Please be praying for her too.

Hockey

I tried so very hard to get some good shots of Sam playing hockey. But for some reason I couldn't even get one this week! He is really really enjoying it. And his coaches have all kinds of positive things to say about how well he is doing. I am so thrilled that he can do it, and enjoys it so much. I have said it many times before, but it just blesses my heart so much to see him doing "normal, typical" kid activities. Matt and I crack up because Sam just starts randomly skipping during the games sometimes. It is so funny to watch him, he is running full force and then starts skipping, I actually caught him mid-air in this picture.. I was very concerned this week as Sam was running full force at times and he would then start complaining of chest pain. Bringing us back to the realization that he isn't a completely typical kid. We had seen a cardiologist quite a while ago, but haven't recently. The last few months his blood pressure has been on the high side too, so I wonder if there is something going on there. But for now we focus on all the fun stuff, and the fun memories he is making for all of us. I just feel so blessed to be watching him grow and thrive, and I LOVE BEING A HOCKEY MOM!!! It is so fun for Sophia and Preston too. Sophia has made a new friend who she plays with at the games, so most of the time she isn't right next to us. And Preston just loves the wide open space to run. Because of the young age of the group of kids playing they actually split the hockey rink into two separate playing areas, and down the middle is where the parents can watch the game. Well in the center of the rink, there is a red line going down the entire rink, Preston runs up and down that line almost the entire time we are there. It just cracks me up. Sometimes he runs straight up and down and sometimes he runs kind of in a zig zag pattern.

Preston's first hair cut

I can't believe my little guy is so big. We have been talking about getting his hair cut for weeks, the back of his hair was just out of control with curls and frizz. But I kept dragging my feet. This morning I just decided to bite the bullet and do it... It is amazing how just a little hair cut makes them look so much older! It is so cute! He doesn't at all look like my little baby anymore though. Sammy did so awesome in his hockey game today! And he was so proud! He was so excited about the fact that he came so close to getting a goal, that he ran over to us IN THE MIDDLE OF THE GAME to say "Did you see that???" He was so excited. I just love this stage of life, he is thriving and brings so much joy to us. Sophia is talking about wanting to play hockey next year too! So fun!!!

Street Hockey

I will be honest, when I learned that Sam was a boy I had all these thoughts and plans for him. I remembered how my parents when we were growing up encouraged us to try all kinds of activities, sports, instruments, gymnastics, church activities, drama, etc etc. My parents really really wanted us to find what we liked and encouraged us to do our best. And I had all kinds of thoughts of what Sammy would do. I wondered if he would play football like my brother did, or basketball like my sister, or baseball as I had played softball and soccer. As we learned about the bleeding disorder I was very sad for him, that he wouldn't have the same opportunities that I had had. And then this year, praise God he has been doing so well in regards to the bleeding disorder, that the doctor has cleared him to play sports! They have said that at this young age that the danger should be fairly minimal as there isn't much force behind a lot of the sports. So we gave him the decision to play baseball or street hockey. And he chose street hockey. His first game was so fun! I am just beyond thrilled that he has this opportunity. Even if he decides that he doesn't like it, I am just blessed that he gets to try. He loved his first game, and did really well. Matt's parents also joined us, so Sam was thrilled with that as well.