Its been a long and eventful week...

Monday we had another set of casts. This was our 3rd set in a weeks time. But the hard work was paying off because his feet looked good. Very good. Good enough that the doc thought she could do the tenotomy the following day if I could commit to helping stretch the foot for 2 hours between the time we soaked the casts off and the time the tenotomy would be scheduled for. I said of course.

In the meantime, poor Grandma Mary Anne got the flu. She has a temp and had to fly home so that she did not get us or the babies ill.

Tuesday was insane. My mom came down to help me with the appointments. We had to be to casting by 11am so that we had time to soak the casts off and for me to manipulate the foot in time for 1-2pm. We soaked and then went for OT and PT. I spent an hour or more turning Owens little foot, while he was fitted for hand splints, an activity that he was less than thrilled with. He cried for as long as it took for them to cut the plastic, melt it, fit it, melt it, fit it, melt it, fit it and position his tiny curled up hands in their new open position. It was hard to listen to and it did not stop there. He cried through PT as well. Apparently, I had not been stretching his foot hard enough, so when the doc came down to see our progress, she stretched him hard and asked the the therapist really work it. He cried. I almost cried. It was hard. Then it was time. I was so nervous for him. I knew they would not let me stay in the room. I knew he would have no pain medication prior to. They topically numb the skin, but he would not receive a novicane type shot until it was over, this had something to do with not filling the area with fluid. I brought him in and luckily my favorit medical assistant was going to stay with him and our dr. and her fellow, who we love, was there. I knew he would be in good hands. I kissed him 30 times and left. Not more than ten minutes went by when they came to get me. He wasn't crying, he looked fine and it was over. They were casting his foot. I was relieved and finally, we were able to go home and get some rest.

Wednesday, mom and I went to the pediatric surgeon for Owen's hernia. I like the surgeon a lot. As suspected, she feels Owen's hernia must be repaired immediately. Surgery will be May 10th at 1:30pm. Coincidentally, this is the day that my grandfather died. I hope he is keeping an eye on Owen when they put him under. I am sure he will be. I wish I could say I am relieved that something will be taken care of and we won't have to worry about it any more, but honestly I am just scared for him. He is so tiny. If you read this and you pray, please keep Owen in your prayers on May 10.

Wednesday afternoon was our first Early Intervention interview. I do not have much positive to say about this experience. I felt the doctor, a physiatrist, just like the one we met with the week before, was uninformed as he did not know very much about Arthrogrypotic children. He mentioned that early intervention would try to limit my home visits and he looked at me like I was crazy when I mentioned that we had already met with a physiatrist and she suggested all these therapies for Owen and that his care be half home-based and half facility-based since Arthrogrypotic kids benefit from the use of equiptment. Needless to say, I am working on getting him reports from the docs we have met with so he can make accurate suggestions for Owens care. Otherwise, I am ready to argue with everyone. All anyone tells me is that the more these kids move, the better for their future, so in my humble opinion the word "limit" should not be a part of anyone's vocabulary when it comes to the physical and occupational therapy that we should be entitled to. This saga will be continued.

Thursday was a low key day, with only one appointment. My dad came down and helped me take the babies to the pediatrician. My goodness, they are gaining! Owen is 6lbs and 7.5ozs and he is getting little rolls by his thighs. Caleb is just my little fatty. He is 8lbs and 5oz. It is crazy to me that Gavin was 8lbs and 4oz when he was born. Caleb is huge to me! I forgot the diaper bag and of course it was feeding time. Thankfully, I had pampers in the trunk, however, the doc had to supply me with formula to feed them. They eat mostly breastmilk with a chaser of formula since I cannot seem to make enough milk for the both of them, but I was thankful she had something for them so that the hectic screaming would stop. I felt like mother of the year. Thank God we did not have any incidents of explosive poop!

Friday was my first day of appointments alone. I had presurgical testing in the morning in the City, came up to Yonkers to grab Gavin from school for 2:30 and then went back into the city for 4pm casting. I have to say, I am proud of myself for making it through. It was hard, but I managed to get all of us dressed, washed and out the door, with bags packed, lunch packed for me and an endless supply of things for Gavin to do. Nick met us in the City at 4:30 and in order to make it more fun for Gavin, we took him to the park after the appointment and we picked up our favorite tacos.

As an aside, New York City parks are an education for a child. At least Thompkins Square Park is. In the land of parks, this one is PG-13 and bordering on an R rating. Thankfully, Gavin was too pre-occupied riding his bike like a madman between all the people to pay attention.


Next week we have casting, bloodwork, pt and ot. It seems now, like a light week. I hope it stays that way.

Babies are wailing...time to eat!