Our Day

So today was exhausting. Enoch had an occupational therapy appointment and a GI appointment. Pip had a hair cut – still a very important thing. I had an appointment with my trusty friend Diet Coke and that got me through the appointments and rewarded me for the hours setting up future appointments and making insurance phone calls. Sam contribution was to hit a car on his way to work. No one was hurt except the other car so no worries there. All is well now because we are all home the kids are asleep and Sam and I are enjoying a feast of hummus and carrots.

Enoch’s OT appointment went pretty well. I know I say this every time, but his neck is getting stronger! He can hold it up for maybe 30 seconds at a time before he starts dropping it. His OT mentioned that she noticed his legs are getting stiffer. Poor kid has Hypertonia (stiff muscles basically) in his legs and arms and Hypotonia (weak muscles in his trunk and neck). We don’t know what causes that other then it is all part of the beast that is Holoprosencephaly, but our OT said that she is very interested to see what the Neurologist says.  She wants us to see a physical therapist as well and up her visits to once a week so we can keep on top of his development. I am excited for that because I need all the help I can get. She is glad we are going to see the orthopedist and she disagrees with our Pediatrician about orthopedics. She does not think it is going to be hard to manage and she really doubts we are looking at surgery. Overall a great time and Pip loves to see her and wear her shoes. We are lucky to have such a patient person help us. 🙂

Next we went to my favorite park in the whole world. Enoch loved being carried around and Pip liked seeing a horse statue and a cow in relief.

We made our way south after that to the GI doctor. He is really nice and was honest without being discouraging. We talked about what the future looks like for Enoch as far as eating goes. Enoch is not really following the standard growth curve, but the doctor pointed out that Enoch is following his own curve and as long as he keeps on it we shouldn’t worry to much. We talked about the fact that Enoch isn’t really increasing how much he eats each day. Right now he is eating enough for a 14 pound baby so that is good, but the problems will come if/when he starts to get bigger. If his brain doesn’t “learn” that it should eat more then 3 to 4 oz at a time then no matter how hungry or thirsty he gets he won’t eat. If that is the case we will notice that he starts to look skinny. This would also be a problem because with diabeties insipidus he needs fluids to clear out the sodium and if he doesn’t get those we run into another set of complications. So we talked about what an NG tube (feeding tube through the nose) and a G tube (feeding tube through the stomach) would look like. Apparently having a G tube put in isn’t as invasive as you might think. He made sure to tell me it is invasive, but completly worth it if that is the only way to make sure Enoch gets the nutriants he needs. He is also really interested in what the Neurologist has to say because he (GI doctor) thinks we might also want to consider seeing an Endocronologist since Enoch’s thalmus and pituitary glands are not fully divided. He gave me a stack of cards to give to our different specialists because he wants to be informed of what they find out and keep tabs on what is going on. I have to say Pip was a champ and sat quietly with the ipad the whole time. She got a pretty pink braclet out of the doctors prize box for her trouble. A cool kid in the waiting room told me all about how great this place was because of the prizes. It is almost to bad we have to wait two months to go again.
Last of all we went and got Pip’s bangs trimmed. She also got another prize there! I feel like all in all she had a pretty good day. I want to say that tomorrow we will stay home, but we will probably end up at the zoo.

I had dreams of a road trip, but today killed that dream since we won’t have enough time in between appointments, but that’s okay. I read a blog where someone mentioned that we have to stop mouring for the life our kids won’t have. They don’t know any different and the life they has is good and worthwhile and wonderful. By extension being their caregiver isn’t what we expected, but it is important and fulfilling and wonderful. We have hard days (as you probably noticed in my last post), but most days are filled with moments of pure unadulterated happiness if you have gotten enough sleep to see them. Life is really very good.