The waiting game...

After two full years, there is nothing worse than the waiting game. Do we have to go back to Boston? Do we have to have more testing done? Do we have to be readmitted? How much will insurance cover? How much will this add to our already crazy list of medical bills? How long will Isaac and I be away from Brian and Christopher? Who will watch him while Brian works. Oh my goodness is it ever frustrating. There are so many days that I wish I went to school to be a pediatrician as well as a GI doc, a surgeon, a nutritionist and an IV tech. Life really would be so much easier, except I'd still be in school :)  It's been a waiting game to see if we had to go back to Boston because of malnutrition. Isaac is having a hard time getting bigger. His weight is only 26.13lbs and he's only 33.5 inches. He's been the same length for a very long time and his weight keeps going back and forth because of sicknesses and becoming more mobile. Thank goodness we are getting better, but it's still frustrating to think of living out of a hospital again. I did it before and didn't think twice, but to think of it now can be overwhelming. Luckily I haven't heard back from Isaac's Nurse Practitioner, so I'm thinking we are in the clear. If we weren't, I know for sure she would have called me the second she got his totals. But we really need to pray for this little guy to grow!

Now for the fun stuff. These boys rock my world! There is no other way to put it. They are so much fun, so much joy and all at the very same moment, they can drive me crazy! CJ totally has my personality. He's independent and free spirited. Everything his doctors said from day one about him being a fighter and that was getting him through it all was totally true. He's such a fighter. Just ask Isaac's head as he got hit over the head 7 times this morning! Yes CJ has exhausted time out. It means nothing to him now. Looks like I need to get creative, again. CJ loves to do his own thing. He also loves to take everything that is mine and bring it to another room. I never know where my purses will be :) He loves Isaac so much though. It's a love like no other. He always looks out for Isaac first, them himself. I love twins!!!!!

Isaac is doing so great with his walking! It was a rough 2 weeks, but he's back stronger than ever! He loves his Physical Therapist! I don't want him to turn 3 because then we move on from her. He's willing to do anything she asks. She came yesterday afternoon and he walked all over. She left and he kept walking. He stood all over this morning and tried so many new things. We had a play date this afternoon and he played with the other 3 little boys like he was totally normal. It was such a precious thing for us to see. He stood all over and even climbed on top of the kiddie picnic table. He has such a strong desire to do everything set before him. He really wants to make us proud every day, but honestly I don't think he could ever not make me proud. They are the best little guys around!

I can honestly say that for the first time in 2 years, Brian and I feel like we are starting to live. Until April 1st, we were in and out of hospitals or doctors offices every week. From October 18th until Jan 16th, we were at a doctor's every single week. I can't even tell you how hard that was, and even if I could, if you haven't lived it yourself, I don't think it could be understood. I worked with a woman who's daughter had many, many open heart surgeries. I never grasped the level of pain, grief, trauma and joy (when the surgery was over), until I went through it every day of my life.

Have you ever had to regain your life after watching it pass you by for 2 years? It's hard. It's hard to pick up in friendships and family relationships where you left off. Some understand and totally support you because they know you did what you had to do in order to help keep your children alive and moving forward. Others may not be so forgiving. For that I am so sorry that I was not been a great friend or family member. But I had, and at times still have to have one focus. Isaac and Christopher. We were newlyweds, married less than a year (thanks to our kids being born 15 weeks early) and going through hurt. Talk about putting our marriage to the test. There were many weeks and months when Brian and I co-existed without even saying anything because the emotional roller coaster we went through was too great. But God is so great that He not only saved our marriage, He made it amazing! Never in my life did I think marriage could be this wonderful. For all our friends, uncles and cousins who are getting married this year, there really is not another greater gift that we could be given than the love of our husband or wife :) But God has done so many things in our life, Christopher never had another episode with his esophagus. He was suppose to have all these issues because it was so short, but he hasn't. I know that he can have issues for another few years, but I know he won't :) God has been so amazing with Isaac. He wasn't suppose to crawl, walk or talk. He is sooooo smart! He can crawl all over like a crazy boy, he's learning pretty quickly how to walk and he's trying so hard to talk. God is so good!