Therapy changes

Today was a good day. Reagan has been such a darling all day today. So sweet and so talkative...just a joy. Quite the improvement from yesterday. This morning she had another appointment with the Feldenkrais practitioner. She had actually just gotten back from a training session in California with Anat Baniel. She was very inspired after seeing the work Anat does with children. Of course with Reagan's great mood, she was very cooperative during her session. She was actually so relaxed that she fell asleep on the table at the end of the session. Then we picked up and went straight over to feeding therapy. Reagan woke up just as we walked in...smiling away. It was a good session. Her therapist worked with her on chewing, a gummy bear wrapped in a mesh fabric, and she did a really great job. She was chewing it way back on her molars and never gagged once, which was surprising, I figured if anything she'd choke on her spit because she's been so spitty today. We're going to miss her feeding therapist, she's going to be out of commission for 2 weeks or so while she recovers from foot surgery. All of Reagan's therapies are going to be a little off for a while because of the move. When we're living with my mom her current OT has agreed to continue seeing her once a week (but when we move into our new house we'll have to switch over to a new OT). Her PT just notified me at Reagan's last session that she wasn't willing to drive that far, so I'm not sure if they'll be able to find someone else to work with her temporarily or if we'll have to wait until we're in our new house. Sounds like she'll be getting a little vacation from her hectic therapy schedule at least for the next few weeks. We've already signed up for the next round of aquatic therapy at Texas Children's. It doesn't start until Sept 15th but I'm pretty excited to see how Reagan does with it. She'll be getting her physical therapy in the water. I think that will be very beneficial for her because she does tend to loosen up a little when she's in the water. The aquatic therapy is only once a week, so I'm thinking of trying to get her in for an additional session per week of "dry" PT while she's in the program. We'll see. Still working on the packing. We're running out of time. I know in the end we'll probably be forced to just be pour out drawers into boxes. My mom came over again today to help me and I've convinced her to donate her services tomorrow as well. It's crunch time!

Pain in the tummy

Sleep last night was the same. Reagan only woke once but went back to sleep quickly, no complaints about that. Unfortunately, her great mood from yesterday was long gone today as the tummy pains set in first thing this morning. Lots of crying. Poor thing. Why is it so painful for her to have a bowel movement? There is one last test to do that might give us some sort of clue, an endoscopy/colonoscopy scheduled for the 28th of this month. I sure hope that yields something, some clue as to what is causing her such pain. It really ruins her day. She cried all morning and then was fussy most of the afternoon. That makes for a long day (and not much packing). Hopefully tomorrow will be a new day and she'll wake up good to go. She's got two therapies back to back tomorrow morning, so we need her happy and ready to work. I know I have mentioned it lately (usually no news is good news), Reagan's seizures do seem to be reduced on the Clobazam. She's still having them when she wakes up and some of them are pretty strong (yesterday she literally slapped me in the face 3 different times when she was having a seizure), but through the course of the day the number has gone down significantly. She's having less "twitches", which for a while were almost nonstop. I'm hoping that we'll just see less and less seizures as we continue to wean down on the Keppra and go up on the Clobazam. Please keep that in your prayers. It would be such a blessing to finally get her to a point where seizures don't rule every aspect of her life. Seizure freedom would be awesome, but I'd be happy with seizure control at this point.

Out like a light

Reagan slept well again last night. She did wake once, but settled down and went back to sleep fairly quickly. She's just been so sweet lately (on the good days anyway). She stares up at you with those huge blue eyes while she drinks her bottle (which is huge for a child with visual impairment), it just melts my heart. She's sleeping so peacefully lately, it's great to see her body finally able to rest, although at times it happens at inopportune moments. Like today during feeding therapy. Her therapist was commenting on how relaxed Reagan was (she wasn't trying to go into extension like she usually does) and that was it. She fell asleep while sitting in her therapist's lap eating avocado. Out like a light. In the picture below her therapist is doing some stretches on her and she never moved a muscle. She was definitely a little groggy at times today. Not sure what that's about. I like it at night but I could do without the daytime sleepiness. Don't get me wrong, a nap here and there is a good thing, but all day sleepiness just doesn't jive with Reagan's packed therapy schedule. It's just strange because there are days like yesterday that she just can't seem to take any decent naps and then today where she's been in and out of naps all day. Strange.

Sleep found us

Last night was a good one. I guess after all my complaining someone decided to cut me some slack! Reagan only woke once and fussed a little, but by the time we got to her she was back asleep again. Then she slept through til 6:15am...which was great. She's been in a good mood today, but she's been needy. She only took two naps, both of which were not very long and in my arms. The second I tried to lay her down...she woke up! Ugh. She also had PT and a visit from her ECI developmental coordinator today, so needless to say I haven't gotten much done in the ways of packing. I'm trying to convince my mom to come over and help me pack. She's a lot more organized than I am. And when it's your stuff, you tend to spend too much time going through everything instead of just throwing it in boxes. We're running out of time...now is the time to starting throwing it in boxes. The only problem (if you can call it that) is that my mom wants to spend all her time with Reagan when she comes over. Easy solution, toss Reagan in a box full of toys while we pack (see below). She thought it was funny for a second or two and then wanted out. One box down, 50,000 to go! I just hope everything fits in our storage container. What do we do if it doesn't? Start giving things away? These are just a few of the things I'm stressing about.

Where did the sleep go?

Reagan was up a lot again last night. Restless. By the time I would make my way back to bed, she would be up and fussing again. I really thought increasing the Clobazam was going to help her get back to sleeping better, but it didn't seem to do anything. It's almost worse that we had a few nights of pretty good sleep, only to have them disappear again. Despite the lack of sleep, Reagan managed to wake up in a happy mood this morning. She made it through OT this morning without any incident but then the fussies came on right before she was supposed to go to feeding therapy this afternoon. I went ahead and canceled because I didn't want to repeat the screaming fest she had a few weeks ago. It was probably a smart move because she was getting tired and just needed to sleep it off. Sleep, we could all use some of that. Continued prayers in that area are always appreciated. We did finally get the A/C inspected today in our new house and it appears that everything is OK. The day of the inspection the A/C couldn't get below 81 which really concerned us, but we think it was partially due to it being off all day beforehand and the inspector leaving the doors open as he came in and out. So it looks like nothing is really holding us back now. Nothing except us, that is. It's just such a big decision and we didn't think we were going to be making it so quickly. We really thought we would have time to sit back and look at lots of different houses/neighborhoods while we saved up some money. Now here we are rushing to close before the end of the month with no money saved and we're stressing about it a little. I do think this is a good house for us though. A good house for Reagan and that's what is important.

Time to increase

We had another up and down night last night. Maybe Reagan is getting acclimated to the effects of the Clobazam, or maybe it's her tummy keeping her up. It was a long night and the day wasn't much better. She was pretty miserable most of the day today and I'm fairly positive tummy pains were to blame. Lots of moaning, whining, and crying...she wasn't much fun to be around. This continued all day, that is, until Grandma came over. She was horrible all day and then she turns it on when Grandma shows up. What a turkey. Tonight I increased her Clobazam to 1/2 pill at night (and kept the morning dose the same). Maybe that will help her sleep better. I sure hope so. Not much going on tomorrow. I need to get some more boxes packed and call an A/C repairman to go figure out what's going on at our new house. Hopefully no major issues, but you just never know. Please keep Reagan in your prayers, she had a rough day today and could sure use a better one tomorrow.

Start packing

Last night's sleep was off a little, Reagan woke up 4-5 times keeping us on our toes. She was fussing and having some gas, so I'm guessing that was contributing to her sleep issues. We all slept in a little this morning and she's been in a good mood all day. We finally decided to pack a box or two. Slowly but surely. We got a little motivation this morning when Shonda, someone who reads our blog, and her husband brought over a whole ton of boxes for us. They own a packaging business and were so sweet to bring us some supplies to help us in our move. We enjoyed talking with them and we were touched by their generosity to want to help complete strangers. Afterward, Mike was so inspired that he went over to our storage unit and in three trips cleared the entire thing out himself! The plan is to get one of those PODS delivered late next week and fill it up. That way, they'll store it and then bring it out to our new house when we're ready to move in. No more back and forth to a storage unit. We just have to make sure that we don't pack up anything that we need in the meantime. No big plans for the 4th, but that's typical, we rarely do anything. Tonight we drove over and stalked our new house. Just checking out the neighborhood. We went and stood on the back porch of the house and I have to admit, it's nice. It's actually very quiet (a nice change of pace to the noisy road behind our current house). I could get used to that view. People were walking the old golf cart paths and ducks were standing on the old tee boxes. Mike already has it planned out how he's going to stand in the backyard and hit golf balls onto the nearby green. Now the big question is whether or not this A/C thing is going to be a major or minor problem. Maybe it's a quick fix or maybe it's a complete overhaul. I guess we'll find out Monday. I'm still a little unsure of what we're supposed to do so please keep this in your prayers.