Friday, August 31, 2012
Thursday, August 30, 2012
Wednesday, August 29, 2012
Tuesday, August 28, 2012
Monday, August 27, 2012
Sunday, August 26, 2012
Saturday, August 25, 2012
Friday, August 24, 2012
Thursday, August 23, 2012
**No time to post tonight...will update in morning. I did see on Facebook that little Gabe passed away tonight! Please keep his family in your prayers!!**
Wednesday, August 22, 2012
Tuesday, August 21, 2012
Monday, August 20, 2012
Saturday, August 18, 2012
Reagan slept well last night and then woke up this morning still very much "off". She's been very clammy and sweaty and super gaggy. She had a few really big throw ups this morning...poor girl, she just can't seem to kick this nausea. She's been having nausea of some sort ever since Tuesday! She hasn't been this nauseous since before starting nortriptyline. I'm hoping it will pass soon. She had a huge blowout of a diaper and I think she felt better afterward. Her mood this afternoon does seem improved. She's been laughing A LOT, and although crazy laughs, any laughs are better than none (and much better than crying)!! Less nausea during the day, getting worse again tonight...I'm still draining a decent amount of fluid from her g-tube. Looking forward to an end to this nausea and a good week next week...my girl deserves it!
Here's a pic I missed from the Astros game last week...I just found it on my phone!!
Friday, August 17, 2012
Thursday, August 16, 2012
Moving, moving, moving
Reagan was not up for photos...not a good day for my girl!
Wednesday, August 15, 2012
**Update-It's 4am and we're still not sure if we're going. Reagan was up crying off and on last night and no one got ANY sleep. As long as we avoid any more meltdowns, we're going to go! Please keep her in your prayers!!!**
Tuesday, August 14, 2012
So...the big plans for Thursday. We are going to see a new mitochondrial specialist in Atlanta, GA. Her name is Dr. Fran Kendall and I've heard great things about her. I'm hoping she might be helpful in addressing Reagan's crazy cyclical good/bad day pattern (or at least give us some insight). We're just going for the day. That means we'll be leaving first thing Thursday morning and coming back late Thursday night. The good thing is we won't have to pack and take lots of heavy luggage with us...the bad thing is it's going to be one heck of a LONG day! We're all going...me, Ryan, Reagan, & Mike. Should be interesting! I'm just hoping Reagan is feeling better and Ryan in not a holy terror! Prayers needed for that for sure!!
Monday, August 13, 2012
Sunday, August 12, 2012
Saturday, August 11, 2012
Friday, August 10, 2012
Now...if we could only get them both to sleep all night!!!
Thursday, August 9, 2012
Reagan slept well last night but she did start moving around at 1:15am and her night nurse picked her up. She fell right back to sleep and then slept today. She had speech therapy this afternoon and her therapist brought her daughter. They sang to her and read to her...she loved it! (we got some cute pictures...notice the matching shirts) Then PT came and worked with her and afterward she even spent an hour in her stander (and ate some food)...no problem. She's still been a little gunky in the throat today. And very spunky this afternoon. Kicking and squirming, hands constantly in her mouth (fingers down her throat choking herself)!! Then tonight she's starting to sound a little fussy...thankfully the night nurse is here, but I'm hoping the clonidine will work and help her to settle down and fall asleep! Hopefully we can avoid heading into bad days...we are way too close to the weekend for this!! Prayers for my girl please!!
Wednesday, August 8, 2012
Reagan was laughing and making a lot of noise last night but each time I checked on her...her eyes were closed. She obviously didn't have a very restful night's sleep, but I guess we'll take what we can get. She woke up this morning very much the same as yesterday...wide, frightened eyes...but quiet. The crazy laughs started back up the second I picked her up out of bed! She's been laughing a lot again today, but the laughs today have been more laughy and less fussy. She's also been relatively still today. Not as much moving...even her hands have been still (not constantly in her mouth and hair). She has had two minor meltdowns today, one little crying episode this morning when she decided she didn't like a particular toy and then a big crying episode this afternoon right as the nurse was leaving (we were talking about something and Reagan decided that she didn't like us talking)! Other than that, she's been good (no Lortab needed). She has sounded pretty gunky in the throat all day but she hasn't really been "gaggy" (we even fed her this morning). Hopefully she's turning a corner and leaving these "off" days behind! We need good days...we have big plans for this weekend that involve Grandma and an Astro's game (with the mito group)!
By the way...Ryan didn't sleep any better last night after his cereal...if anything he slept worse. But today he gobbled it up again and seems to be sleeping a little better! Hoping this will translate to better sleep at night!!
Tuesday, August 7, 2012
Reagan slept well again last night but woke up this morning on edge. She had those wide eyes and that zoned out look on her face. She calmed down for a little while, but has had the crazy laughs and been very much on edge all afternoon. We tried giving her some Lortab to take the edge off and it seemed to help a little but not much. She's also backed up in the poop department. She hadn't gone since last Wednesday. She finally went tonight (with my help...I know...TMI) but she was still trying to hold it in! Just another example of how her bad/off days are obviously related to her GI issues. Tonight the crazy laughs continued but they were much closer to tears. Thankfully she made it through the night without any major meltdowns...now we just have to get through the night! She's definitely on the verge of bad days...I'm just hoping with a lot of prayer and a little Lortab, we can keep her from falling into that downward spiral! Please keep my girl in your prayers!
(Today was Ryan's first official day of eating solids...he's been showing interest in eating for quite sometime and we've been dabbling for a while. He ate oatmeal with apples 3x today and would have probably eaten a lot more than I gave him. We're just hoping some cereal in his belly will finally get him to sleep better! Fingers crossed!)
Monday, August 6, 2012
Reagan slept well again last night. She woke up this morning without smiles but content. She's been a good girl all day. Not a lot of smiles but we have gotten a fair share of laughs. Grandma got the most laughs when we did face time with her on the phone this morning. Reagan had been very serious but Grandma really perked her up! Tonight Reagan was very rolly/squirmy. We had her on a blanket in the living room and she kept working her way off of it! All in all, a pretty good day for my girl. She held it together even with her brother constantly whining and pitching fits (that kid is quite the handful)!!
Here's the video I promised...
Sunday, August 5, 2012
Reagan slept well last night. When she woke up this morning there were no smiles but she was OK (and no real nausea today). She was fine all morning and then she started to get a little fussy...next thing we knew she was asleep! She slept for maybe an hour and a half or so til we woke her up. Our Bible study had a little get together this afternoon so we had to get her into the car and it's impossible to get her into that harness without waking her up! She was a little startled but calm. We have a small Bible study but we are slowly being outnumbered by our kiddos...so things tend to get a little rambunctious! Reagan and Ryan both did well with all of the chaos! Reagan was indifferent but Ryan seemed to enjoy the noise and activity. He's a little hyperactive himself (takes after his dad)! I had him in the bouncer today and he was going crazy in that thing (I'll try to post the video tomorrow)! Anyway, everyone is finally in bed so it's time for me to do the same!
Saturday, August 4, 2012
Reagan fell asleep last night and we were hoping she'd stay asleep and sleep off her nausea. That didn't exactly happen. She woke up fussing and was actually pretty upset. It wasn't looking good. I gave her a dose of Lortab and Mike laid down with her til she fell back to sleep...but we were both worried what today would bring. Then this morning when I went in to get her she was lying in her bed wide awake smiling!!! Talk about relief!! She was still pretty nauseous this morning and had a big throw up shortly after waking up...but she was happy (so we were happy about that)! I spent some time on the phone talking to the pharmacist trying to track one of her medications that they have discontinued (nortriptyline). The only place they had some was in Kemah, about 45min from our house. So we decided to take a little road trip and we went and picked up the prescription and then went down to the Kemah boardwalk for lunch. It was hot and very sunny, so we didn't do a lot of walking around, but everyone got a little sun and spent some time out and about (and Ryan even behaved himself in the car). Before heading out we did do a little carseat shuffle. Since Ryan is now just short of 21lbs (I think Reagan was 1yr at that weight), we decided to switch him over to Reagan's old Britax Boulevard carseat. Reagan has been using the Britax Traveller Plus (a special needs carseat we got several months ago) and we HATE it. It's way too plush and gives Reagan no support whatsoever (even her Boulevard worked better). So I saw this ez-on adjustable vest online and decided to order it and give it a try. We used it in conjunction with her special tomato sitter and it gave her far more support than anything we've tried in the past (she likes to lean forward out of her carseats and she didn't do that at all with this)! We're planning on using it when we travel as well, so we don't have to bring a big heavy carseat along with us!! It's a little tricky to get on, but very easy to get off...so we'll see. I'll keep you posted. Please keep it in your prayers that our sweet girl continues to have good days!
Sitting up so well in her harness (and holding mommy's hand...so sweet)
Not thrilled to have her fat brother sitting on her (sorry the lighting was blue...it was the Aquarium Restaurant)
Friday, August 3, 2012
Reagan slept well again last night and woke up happy again this morning. Very similar to yesterday, she was spunky, vocal, and rolling everywhere. We fed her this morning and she did really well with it. I gave her pear/pineapple and she seemed to like it a lot, taking very good bites. I gave her a little more than yesterday, but didn't want to over do it. Afterward she had speech and OT and did very well for both. Then this afternoon...out of no where...she had a little cough/gag and then 30min later she had a big throw up (and then fell asleep afterward). Poor girl and she was doing so well!! She woke up and was fine, just a little dazed for a while, and then she had another throw up! She's been pretty spitty and constantly sticking her fingers in her mouth, so I'm sure that doesn't help. Overall she hasn't really been nauseous, so I guess we'll just have to see how she's doing tomorrow. Hopefully she hangs in there and continues to have good days! Come on girl...you can do it!!!