Before we headed up to Albuquerque we had a nutrition appt our house. LeeAnn came over and weighed/measured Pace and we chatted about feeding rehab, his good days eating and his bad days eating. He did lose 4 oz from 5 weeks ago when he was weighed last, which isn't what we want or need while trying to get him to eat normal amounts of food. He still is very selective and does not take in much quantity each day so we are still supplementing with elacare jr formula so he doesn't waste away and lose a lot of weight.
22nd feeding rehab: We arrived just in time for his 3pm appt. Pacen was rather chipper and was eager to please for this session. He ate 4 ritz crackers, 3 bites of yogurt and a few pieces of fruit dipped into the yogurt. He didn't refuse, gag, choke or vomit during the session so we ended the eating portion of therapy on a great note and played a game of basketball. Pacen is always so intrigued by the larger therapy bikes, so he got to have a turn with a trike his size to end the session. He loved it!
23 Jan Feeding Rehab:
Pacen had another good session, although he was rather spunky and had to be redirected many, many times. He is still working on quantity, and calories. For breakfast he enjoyed some chocolate mousse, chicken from the evening before, and 1 baby carrot. He had such a hard time chewing the carrot, but he stuck with it, actually chewed the carrot, and swallowed it with some juice. That is such a good milestone to hit. He normally just mashes food a few times quickly like a squirrel, and then let's the food sit in his mouth until it is soft enough to swallow which usually results in him choking. Yey for small victories!! After he ate breakfast he went for another bike ride in the hallways and finished up playing basketball again. See a trend in his favorite things to do at therapy? He is a basketball man.
23 Jan Neuro: Pacen slept through his Neuro appt, so I had a great chat with our Neuro. She is so caring and helpful. Sunday evening he fell asleep on me and was really twitchy, so I laid him on our bed and took video of him to see what I could catch for the Neuro. I was about 1 min into the video when it was running out of room so I had to store the video and open another one. Sure enough, in the 5 seconds it took for me to store the video he had a small seizure. I caught the 5 seconds of twitching following the seizure, and I did come across a video on YouTube of how his legs were moving so the Neuro could see what I was talking about. After viewing the video of his twitching she decided to up his dose of keppra from 4.5ml to 5ml twice daily to see if we can eliminate the night time seizures and get him sleeping better. He still wakes frequently (but stays in his bed) and tosses and turns all night, so she recommended we get a video monitor to be able to watch him for all naps and sleeping before we go to sleep. She also ordered a sleep study, and didn't think we'd be able to get into the pulmonologist soon enough for her liking. Hopefully the referral will be ready next week so I can call and get the preliminary sleep study consultation made before too long. We go back for a follow up on 19 feb to see the Neuro.
24 Jan Feeding Rehab: Pace did really well today, he only gagged and choked once due to the fact he doesn't chew very well, but he got it out himself and continued on taking bites. He ate about 8 pieces of chicken, half a baby carrot and a few tiny pieces of broccoli. With only one choke/gag and zero refusal, it was a great session! MJ and Daddy joined us in the rehab gym after Pacen ate for some basketball! We are heading home now to pick up Tucky from the puppy resort and checking Levi's email at work for an EFMP update! Cross your fingers, toes and wish us luck!
We also got the phone call that Pacen's ECEP Evaluation is on 11 Feb at 8am!
We will be heading back up to Albuquerque for Pacen's allergist appt on 10 Feb, sneaking in a feeding rehab that afternoon and heading back to Alamogordo for his eval the next day. Phew! Who else is tired just reading all of that? I am.
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