Fortifier Change

Today Henry had another couple of appointments. This is a busy week, 5 appointments. He saw Dr. Hassan, the GI specialist in the morning. We had some stool samples that were tested for microscopic blood that would indicate if he is having an allergic reaction to the old breast milk we were feeding him that was produced when Kate was eating soy and dairy. Kate and I had seen something in his stool we thought was blood and had stopped giving him the old breast milk. To our great surprise there was no blood! So it is possible that Henry is not allergic to soy and dairy and that it was only the fortifier that we were using when we left the nicu that caused the problem.

This opens the door for our next step in the feeding game. We are going to start giving him the similac fortifier which is what he was receiving in the nicu. The reason to make this switch is that it has much higher calcium content than other fortifiers. Henry needs to grow and increase his bone density which is what makes this so important. The concern was that it contains dairy and soy so if he was allergic to those things obviously he would not be able to tolerate it. We are going to give him this new fortifier and go back to Dr. Hassan with some more samples in a few weeks. If at that time he is still clear of blood possibly we will resume giving him old breast milk that contains dairy and soy or Kate will resume eating dairy and soy.

After we came home from that appointment it wasn't long before Judith from the Blake Foundation showed up. This was her first visit. She is evaluating Henry and going to be getting him enrolled in the various government programs that help monitor and aid children that are at risk for disabilities. She will be back in a week or two with an occupational/physical therapist who will evaluate Henry and give us exercises and tips for his physical development.

In the paperwork it was rather surprising how many programs there are for children. I believe there were about 7-10 different government programs that could potentially be involved with Henry. I guess I shouldn't be surprised, efficiency isn't what government is known for. I think the recent debate about the schip program demonstrates the inability of politicians to say no to programs to help children, despite their merits or lack thereof. No one wants to be branded child haters.

Besides the doctor and social worker visits it was a fairly typical day. Kate weighed Henry at 8lbs 15.5 oz early in the day. He had an active day bowel movement wise and so Kate weighed him later in the day and he was 8lbs 14.5oz.

Grandma visited in the afternoon, catching the end of the visit from Judith. Kate was able to get some grading done and I got some sleep. Grandpa visited in the morning and the evening. Henry missed his walk in the morning because I let Kate sleep a little later and then I had some work to do. We did go for a walk around sunset. He actually stayed awake for the whole walk which is rather unusual.

We took Henry off his oxygen for a few hours this evening. It has been a major pain trying to get the cannula to stay in his nose properly. One reason why is that his cheeks are now much chubbier. So when he lays on the side of his face the cheeks can squeeze and move which causes the cannula to move.

We still have not heard any progress from the pulminologist regarding the study that is to be done on his oxygen saturation's. I guess I need to make yet another phone call to the pulminology nurse to harass her. I want him off the oxygen in the worst way and getting jerked around by the pulminologist at this point is very frustrating.

Tomorrow we get to go to a second pulminonlogist so he can be evaluated for the Synegis shot. This is to protect him from RSV which could be devastating to his little system if he caught it. Of course our pulminologist and our pediatrician don't give the shot for some reason which is why we have to go to a second pulminologist. Just what he needs, to be exposed to yet another germ infested doctors office. We are supposed to keep him isolated with exposure to as few people as possible. Since he has been home it has been a constant parade of medical people through our house and constant visits to doctors offices. So we can't have friends and family over but he can go hang out in every doctors waiting room from here to Mexico. Annoying.

He has been sleeping better, as Kate has mentioned. However, we still aren't able to get him to sleep any amount of time in his crib. Yesterday after we came home from the doctor he slept for quite a while in his car seat. It has been suggested by others that the car seat is a good place to put a kid with reflux because they sit upright. So tonight I'm testing the car seat as a possible alternative to the crib, at least for now. It is nice because I can have him near me wherever I go but don't have to hold him. That leaves my hands free to do important things like type up this blog or put the dishes away. I have the car seat connected to a stroller which can carry the oxygen which makes things even better. We'll see how this goes. So far it is working fairly well. Hopefully I can get some sleep with this setup.