Friday, April 5, 2013


Jack went to the pediatrician Wednesday. He gained 4 ounces but that is not as much as he should have gained. The gastroenterologist advised me to add 1 tablespoon of rice cereal to each 2 ounces of formula. The purpose of that is to thicken it so it is harder for him to spit it up. This is to combat his reflux. The problem with this is that the thick formula is very hard for him to suck through the nipple. The cleft palate people told me that his sucking through the nipple is the equivalent of an adult trying to suck through a straw with a large crack in it. She had told me that often cleft palate babies use more calories trying to eat than they are getting from the feed. This seems to be the case with Jack. He seems to be eating a lot even though it is hard for him and often frustrating for me. The pediatrician advised me to stop putting the cereal in his formula. I did that and he threw up everything he ate. Seriously, we went through eight outfits in one day. Thank God my cousin Eileen gave us some huge boxes of boy clothes her sons used. They are saving me right now!

Yesterday we went to the gastroenterologist. They weighed Jack and said he gained 11 ounces in 14 days. Huh?? I think the pediatrician had me in a different room than he did the first time and the scales are different.     The gastroenterologist only has one baby scale so I know it was the same one there. The gastroenterologist advised me to keep putting the cereal in his formula and he thinks he is doing fine. Relief!

In addition to all his other problems, Jack also has scaphocephaly. That is a head that appears flattened on the sides and somewhat elongated. This is common with babies that were premature and on ventilators because they have them lying on the side of their heads. The plastic surgeon I took Jack to for his cleft palate said it is concerning and needs to be watched. He said if it doesn't get better he will need carniofacial reconstruction. This freaks me out a lot. I was explaining all this to my sister Kathleen and she suggested that I try craniosacral therapy for Jack. Craniosacral therapists use gentle touch to manipulate the skull. I found a craniosacral therapist online that is near me and has extensive experience with pediatric patients. She is also a physical therapist. I called her and she said she really thinks she can help Jack with his head and also with his palate. Obviously she can't get the muscle in his soft palate to grow together, but she thinks she can do some things for his hard palate. That was really encouraging to hear. We are going on Wednesday. Of course it is not covered by my insurance because it is an alternative treatment, but if I we can avoid such an invasive surgery for Jack it will be worth any amount of money.

I am taking Jack to different types of doctors every day and we have a lot more to go. In the evenings I take Julianna to her activities. She has swimming on Monday, violin on Tuesday, ice skating on Wednesday, karate on Friday, reading and arts and crafts on Saturday and soccer on Sunday. In a few weeks t-ball starts and that will be two days a week, either Tuesday, Thursday or Saturday depending on the game schedule. Jack sleeps in the car seat and seems to have no problem coming along for the activities.

To top off all the chaos in this house we are finally getting the damage from hurricane Sandy fixed. I am thrilled about that because I have to run up stairs and change the buckets every time it rains. I also have a terrible storage problem in my house because I have no attic, no garage and no basement. We were storing things in boxes in the shed outside, but everything that was in there was lost when the Sandy water came. It was 3 - 4 feet high in my yard. So my solution to this problem was to build an attic. We lost the roof anyway, so why not?

The framer came and ripped everything off the house and had it finished in two days. We now have an attic that is seven feet high in the middle. We had to rip every piece of sheet rock and insulation out of the upstairs so it is now all studs. Eventually it will be nice and new. We are not going to rent anymore since I need the room. I know this will be great when it is finished but right now it is an added stress to an already stressful situation, I was hoping to get it all finished before Jack came home. It didn't happen because there were no contractors available. The guy I got lost all his trucks in the storm so he took a long time to be ready.

All in all we are doing ok, Thanks to everyone for the good wishes and prayers!!

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