Saturday, December 3, 2011

Neurology appointment

We got back from AL early Thursday morning. I realized when I got home I had an appointment scheduled for 3pm on Thursday. Glad I didn't decide to stay another day. So, we took Jacob to St. Pete to the neurologist. We discussed how tight his muscles have been and how I am unsure about his seizures. The MD increased his seizure medication (Trileptal) a little and we discussed how hard it has been to find the generic of this medication in liquid. Generic is $10 name brand is $70. So we decide to switch him to the pill form in the generic since we have other pills we already crush and put through his g-tube anyway. We also upped his baclofen from 1/2 pill 3 times a day to a full pill 3 times a day. I am puzzled by this though. Just 13 days before I wasted about 4 hours of my time, a trip to Orlando, and a $35 co-pay for his Physical Medicine doctor to tell me he is already at his max dose and not to change anything. His neurologist assured me that he can go up to 3 pills a day instead of 3 1/2 pills.  I was also told to work him up to the 3 pills a day slowly and to stop if I noticed an improvement without going to 3 pills. So, we are starting off at 1/2,  1/2,  whole for 3 days, then whole, 1/2, whole. If he is still tight after those 6 days we will go to 3 whole pills a day.

Jacob has been really sick this past week and we have had lots of vomiting. I have held off on his blended diet for a few days and I am actually trying out the new formula Compleat Pediatric that came in the mail while we were gone. It is apparently made of "real food" and is the commercial brand of a "blenderized diet". So far he has vomited 2x since Thursday morning when I started giving it to him :-( I enjoy making his food and will probably stick with it. One day I hope to buy one of those really nice blenders so  I can use more fresh fruits and veggies and get away from using baby food to make his food.

Andrew has been a complete monster lately. I think his terrible 2s has went into full force. He has to levels Loud and LOUDER. The kid screams everything. He had me so frazzled tonight that while I was packing them up early to take to my sister's for the weekend that I forgot important items for Jacob and had to make a 2nd trip to meet her 1/2 way to give my sister the rest of his supplies. He has to be forced to eat anything that is not bread related, he craves attention none stop (I feel bad) anytime I am sitting he is sitting on me, if I am walking he is following me around standing in my way. If I am in the shower he is beating on the door, it I am on the toilet he is unrolling the toilet paper...etc...Wow I can only imagine this if all 3 of my triplets were alive and healthy like he is. I am thankful he has the ability to annoy the crap out of me though :-)

Ava is starting to have quite the weight issue. I am really concerned about how much weight she is gaining..again. She is about 12 pounds over weight. I feel bad denying her food that other kids are having, but she is 4 years old about to go into a kid's size 7! I have seen other kids make fun of her over he weight already and it breaks my heart seeing her follow down the same path I did when I was her age. I am trying to teach her right and wrong and what foods are better for her and how she needs to make healthy choices, but at the same time it is okay to have "the bad foods" sparingly and in moderation. Like tonight she was trying to eat a cup cake at bedtime at my sister house. I explained to her that she should not go to bed eating sweets, bad for her teeth, weight etc...she still really wanted it. I offered to cut it in 1/2 or 4ths and said she could eat the rest tomorrow. Finally after taking 1 bite and licking some frosting she told me she was going to save it for tomorrow and that she really only wanted the ring on top. Makes me proud to see her make that decision, but sad that she had to. I am trying hard not to bring bad foods into the house, but with other people in the house buying food as well it does not always happen. I caught her eating a chocolate donut that Christine bought hiding in the kitchen after she got home from school today. She LOVES food. She is always asking to taste everything. I think she finds pleasure in foods. She constantly tells me her tummy is still hungry after eating more than a normal size portion for a child. She cries and begs for more food and generally ends up taking her brother's food or eating off mine or Jack's plate. I am going to try to get her to drink a cup of water before she eats and I will do the same thing with her to see of this helps us both eat less. Am  I wrong to limit what she eats and to cut her off when she still begs for food? I really don't know what to do next.

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