What a crazy two months!

First Day of School

Have you ever kept waiting for nothing but answers to come before you write something? That's what I've been doing. Waiting for yet another answer before I write so that I don't have to keep updating, yet will there ever be a final answer. No...but I can keep hoping :) February was a crazy month for us. So many wonderful and amazing things happened. The boys turned three! That was the greatest day for us. It was a snow day, so we had no choice but to stay home and celebrate, just the four of us. It was the most amazing day. Streamers, balloons, cupcakes, gifts, movies, coloring, playing as a family...it was truly the most blessed day. The following day the boys started preschool. What a joy! They love every minute of going. They never complain. Actually I can't mention school until 8AM, otherwise I'd have to have them dressed and ready to leave the minute I mention it. The teachers and paraprofessionals are amazing! The boys are so blessed to be in such a great environment! I don't think Brian and I ever imagined school being this wonderful for the boys. I really am so thankful how God moved us here just in time for school. Isaac's teacher has such a heart for him. She gets him on so many levels that any normal teacher wouldn't understand. It's as if she has been part of our family from the day they were born :) Christopher is in love with both his teacher and the PE Intern. It's quite funny! He wants his teacher to come to his house so he can show her all his toys and he wants to be the PE Intern. Brian and I love watching them in their after school PE program. There is nothing like watching them run around, use the parachute, bean bags, scarves, music, jumping and all the while them running over to say, "Watch me Mommy, Miss you Mommy and Love you Mommy" while Isaac is blowing me kisses. They are so precious!

However, as precious as they are, I am realizing what being a full time Mom means. It means you will go insane if you don't think ahead. I am fully convinced that this is the hardest job in the world. When I was at The Hartford, I had many different responsibilities, many different roles and yet somehow at the end of the day I was able to leave my job and go do whatever I needed to do without worry. Or even better, during the day I was able to eat lunch either with co-workers, out on my own or just type away and eat as I go. It was my choice. Now, there is no choice. My children are three and they have voices, opinions and think that voicing their opinions should be a no brainer :) Lately I've been trying to think of what I want to be when the boys start first grade. Do I want to go back to insurance or completely change my life and do something I have on my heart? But then I realized that right now I have so much on my plate that I think I am crazy for even thinking ahead.  So how can I think of adding school to my plan right now when I hardly have time to respond to emails,  I am constantly traveling back and forth to Boston for Isaac and I so badly just want to work out. It's official...I am nuts! I guess we will see what God says :)

Christopher is doing amazing! That little boy is hysterical! He loves to run and jump all day long. Every time I turn around he is standing on Brian's back jumping off. He is full of bruises and yet it never phases him. He is always looking out for Isaac and loves him so much. Every day he tells me how happy he is because I am home with him. He really is such a sweetie! Medically, he is doing awesome! He still has a bit of asthma, and we will have to watch him carefully as we are heading into spring which has been known to set him back a bit. But so far so good!

Isaac is a bit of challenge. When he is having a good day, he is nothing but pure joy! It amazes me how people flock to him. Just the other day I brought him to Boston for a contrast enema and many people were drawn to him. There was a little boy, probably around 6, who wouldn't leave us alone. He even wanted me to read him a book rather than to Isaac. There was an older man who started telling me all about his grandson and his tubes, a woman who told me that her doctor said she needed a c-section and she was upset and many people in clinic who just kept asking me when it got easier. It's amazing how he brings people to us. It also reminded me, as I was sitting there going, "when is this going to get easier for me" that we are in such a better place. Isaac's Boston doctors are awesome, but even they said that there was a chance he would have a central line and g-tube for many years until he was able to eat enough food to get rid of it all. And yet here we are at three years old, no tubes at all. We are in such an easier place. It's the unknown that gets scary to me.

Birthday morning, Chef outfits and backpacks.

Isaac has been in quite a bit of pain for the last six months. Most recently, he has been in immense pain. He has been so constipated that he would stop breathing when it was time to go to the bathroom and his face would turn purple, his lips blue and I would have to shake him and yell at him to breathe. Needless to say, the laxative, stool softeners and suppositories were not doing the trick. We saw Isaac's surgeon on Thursday because we were all concerned that there was an obstruction. They did the radioactive study and all they saw was poop and gas, all the way up his colan. The poor thing had the biggest, hardest belly ever! He is now getting two doses a day of an adult amount of laxative and it's working. His belly is getting softer. It's brutal because we can't do much, but it is helping and that is all that matter. Today Isaac is a much happier kid than the last month! It's so wonderful to see him smile!

We think we may have a possible plan for him now. In October when all this started, Isaac's thyroid levels were totally normal. Now they are not. They are very high. We are going to meet with an endocrinologist on Thursday in Boston to find out more. But it is looking like he might have hypothyroidism. I can't believe I'm saying this, but I really hope so. It would be so nice to help him! He has the symptoms, moody, big belly, constipation, no growth....it would be so great to change this with just a medicine and allow his body some relief! There is still an issue with his B12. I will hopefully find out how his numbers are tomorrow. Right now I am giving him an injection every two weeks, but it may have to increase if he isn't maintaining a safe level for that long. We are still trying to figure out with the metabolic team if he is missing the enzeme in his belly to absorb it, in which case Isaac will then go on a research study at Boston just like he did when he began the drug Omegavan which helped save his life. We will keep you posted on that...it's all so complicated.

Brian and I are doing great. Every day I fall more in love with my husband than I ever thought possible. He never ceases to amaze me at what an amazing father he is. This past week he worked between 10-12 hours of overnights, getting about 4-6 hours of sleep a night and was able to be a full time Dad while I ran back to Boston with Isaac. He's amazing! Every day I thank God that he brought me such an amazing person to be my husband!

Thank you all so very much for your prayers. Somedays we feel as if we can't catch a break and we are so beat down that the only thing to do is cry. Even the boys. When I told Christopher that Isaac may be admitted on Friday he reached over and took Isaac's hand and said, "Mommy, CC sad. I love Isaac. No hospital." Our family does not do well being broken up for more than 24 hours, so I thank you so much from all of us for praying that it did not happen! Instead we were able to be home and to love on each other!