Sunday, November 30, 2014

Too tense to go

Reagan slept last night (in her chair) but woke up crying again around 5am. Thankfully I had one more dose of Lortab left and I gave that to her and it seemed to help settle her down and she fell back to sleep. When she woke back up, she was tense, but not crying any more. She was very serious/tense all morning/afternoon. Since she wasn't crying anymore, we were able to take her arm restraints off and give her her hands back! Unfortunately, she never cheered up enough where we felt comfortable with the idea of taking her to the Reindeer Run (benefiting the All Abilities Park we like to go to). Today was Grandma's birthday, so what do I do, I signed her up to run a 5k with me! It started at 5:30pm and had us running through the same park where they had the Mito Energy for Life walk, but now they have the streets all decorated with Christmas light displays. I thought it would be a neat run for Reagan & Ryan and that they would enjoy the lights...I also thought it would help distract me, since I'm used to running with my running partner (who skipped this race because she had just done a turkey trot a few days earlier). Yes, Ryan LOVED the lights, but not enough to keep him from whining and throwing things out of his stroller. And Grandma battled the stroller the whole way, with her back spasming, apparently she was texting me begging for help (but my cell phone wasn't working)...happy birthday to her! I ran a good pace, but let's just say the course was not at all flat like the people had said, and the lights weren't at all distracting (I hardly even noticed them). I was ready to quit, but kept plugging along and could barely walk afterward! So another 5k DONE! Reagan didn't get to come like I had hoped, but the course was so undulating, I would have had a hard time pushing her! When we got home, she was much more relaxed (time away from her toddler brother will do that), so I definitely think she's headed in the right direction. Now, hopefully we can get her in her bed tonight!  

Saturday, November 29, 2014

Really bad day

So it's been a rotten one today for my girl. On a slight good note, she did finally sleep last night. I could tell when I went in this morning and started talking to her, she was very serious. Definitely not the same girl from yesterday. Thank goodness we had a nurse today. It's been brutal. Reagan has been very upset, lots of biting (requiring arm restraints), flailing, kicking, moaning. It's been awful. The only way I can describe it...imagine someone going through the most painful experience possible (child birth, a major wound/injury, etc) with absolutely no pain medication that works, no contractions that come and go...just nonstop unrelenting pain! That's what happens during her bad days. She's biting at anything/everything she's in so much pain. She squeezed my finger so hard today, it felt like she might actually break it (seriously)! Such a horrible thing to watch your child endure...EVER...much less, every week! Ugh. And don't even get me started about the craziness about refilling her Lortab prescription (one of the few medicines that seems to help her when she gets like this)...apparently something was passed a several weeks ago that requires a hard copy prescription for anything that contains hydrocodone (so according to Walgreens, that invalidates the 2 refills we have and we can't get it again until we bring in a hand written prescription)!! Hopefully she turns the corner quickly and won't need it tomorrow anyway! Please keep her in your prayers!

Friday, November 28, 2014

Still good

It was another night with little to no sleep for my girl! Thankfully she was still smiling this morning! She's been in a good mood all day. Very crunchy and tense in her body, but in good spirits! No nursing today. We've got some open spots due to the holiday weekend, yesterday, today, and Sunday are all nurseless days. Hopefully Reagan will behave herself! Her OT came and worked with her today and was able to get some good stretches in (she needed them)! Hoping she's able to finally get some rest tonight, but nervous as to what that might mean. Over the last several weeks she's been following a 5day, 7 day pattern (which if you count a bad day or two, still works out to a 14 day cycle). Unfortunately that means that the odds are against us tomorrow. Praying that whenever a bad day rears its ugly head, it comes and goes quickly! Better yet...just never comes!

Thursday, November 27, 2014

Happy Thanksgiving!

Still no sleep last night for my girl! On a good note...she was still in good spirits this morning, so our day trip to Houston was a go! However, about an hour before we left, Reagan had a huge leaky poo diaper! I was really worried at what this meant for our trip, but thankfully it only happened that one time and at least it was before we left! Both kids were very good the whole way there! Both looked like they might fall asleep at times, but neither ever did. It took us about 2.5hrs to get there and even though it was a little quicker than we even thought, we were all ready to get out of the car by that point! There was a full house, tons of food and kids, and loud music...a typical Guidry get together! Ryan was loving all of the action and he was enjoying dancing to the music! He did NOT, however, eat any Thanksgiving food other than some cherries from the fruit salad. Ugh. That boy. I was worried about how Reagan would do with all of the commotion and music, but as long as the back door was closed (where the loud music was playing) and we had her noise canceling headphones on, we were able to avoid a meltdown. She is definitely getting more sensitive. She's also had cold hands and feet today. I was afraid today might be a bad day, but she held it together and had a good one! We left just before 6pm and Ryan passed out cold immediately. We figured since he was in such a deep sleep, we'd stop right then to fill up on gas. Well, he woke up the second we stopped and then was awake for the whole drive back! Thankfully, both kids were very good on the way back as well. I put Ryan straight to bed, but Reagan was not winding down at all once we got home. At one point she seemed like she might actually lose it (lots of kooky vocalizing), but she settled down. Nothing was putting her to sleep though, not Lortab, not clonidine. We did eventually put her arm restraint on her because she was shoving her hands down her throat so much, there was no way she was going to fall asleep doing that! Mike laid down with her for a while and FINALLY she dozed off. Not expecting much sleep again tonight, but please keep her in your prayers. I'm very thankful that both kiddos cooperated today! That was definitely my Thanksgiving prayer! 

Wednesday, November 26, 2014

Less sleep, more smiles!

Tonight Reagan was really restless in the sleep department. She fell asleep last night on her own, but woke up around 2am and was WIDE awake. I gave her clonidine, but had to move her to her chair, she was kicking around so much in bed. She was pretty vocal when I went and laid back down in bed. She obviously didn't go back to sleep, because Mike later woke up and transferred her back to her bed where he was able to get her to fall back asleep. That didn't last long though and I thought I heard her kicking around right as I was leaving for my walk. When I got back, she was being super vocal...definitely awake! She's been great today. Super smiley again. She had speech and PT today and did well with both. Spent some time in the stander and even did a Thanksgiving craft with her PT!! She's still very into her hand, chewing it until it's completely red! Vocal at very appropriate times. We're pretty sure she's saying "hi" when we great her now! I've heard her say it to me, nurses, therapists, and today to my aunt that was visiting. My aunt Alice lives in Louisiana and works in a special needs classroom. She was wearing a mito shirt that a student's family had given her. Mitochondrial disease isn't as rare as people think. Hoping and praying my girl can hold out and have another wonderful day tomorrow. I'd even take a sleepy day! Our plans are to hit the road for Houston in the morning and drive back in the afternoon! It's going to be a looooong day! Praying for two very good kiddos!

Tuesday, November 25, 2014

Happy poopy girl

Reagan slept well last night, and woke up this morning a happy girl. She's been super sweet and smiley today. She had two therapies, PT and OT. Her OT taped her back with kinesiotape, in hopes it would help her activate those muscles and aid in better posture. It doesn't seem to bother or irritate her skin...just not sure if it's helping. With PT she did a lot of stretching and floor work. She also had 3 poos (2 major)...but it was definitely time for that. I spent some time on the phone today with insurance and emailing the tricycle company. Just trying to get this all wrapped up before the new year (when we switch insurances)! She's been very into her hand today, chewing on it and choking herself with it off and on. Lots of little cough/chokes from the spit! She sure is smiley and sweet though.

Monday, November 24, 2014

Good days

Today was a good day! Reagan slept well and woke up smiling! She had speech and OT today and did really well with both! She was following commands and using her hands well, which is always a good thing. She made it through speech but was trying to fall asleep right before OT, so her OT came anyway and somehow managed to keep her awake! She spent some time doing stretches and stood in her stander! Then she was awake and in a good mood the rest of the day! So glad to see her feeling better again. Tonight she was a little antsy and making quite a few vocalizations, but after a visit from the poo fairy, she seems much improved. Poor girl. All of that holding it in, makes for an unpleasant experience. Other than that, she's been super sweet and happy. We could tell last night she had turned a corner, definitely going to enjoy these good days!

Sunday, November 23, 2014

Rough day, but better tonight

So I was really expecting today to be a good day. It seems like lately Reagan only has been having one bad day and she's already better by the next day. That didn't happen today. For one, she was up a lot last night. Crying, moaning, just plain miserable. She slept a little this morning and was still asleep when the nurse got here. Unfortunately, it was our new PRN nurse's first day and she had a rough one. Thankfully, she's a good, experienced nurse and it didn't really phase her much. Reagan slept off and on all morning (with the help of medication), but then had a period this afternoon that was REALLY rough. Lots of screaming, flailing, was bad. Her nurse was definitely a little concerned. But she eventually got over it and then tonight, right as the nurse was leaving, she seemed to turn the corner. She had a little smile and just looked content. Tonight we even got some laughs out of her! Such a relief to see her feeling better. Whew! We are all going to sleep better tonight. Hoping my girl can get a good night's rest in her bed tonight! Thank you for your prayers!

Saturday, November 22, 2014

Bad days too soon

Sorry for the late posts! It's been a booger of a weekend! Here is Saturday's post...
Reagan slept last night but woke up this morning crying (I guess the stillness yesterday really was the calm before the storm)! At first, we were able to calm her a little, but she eventually escalated and then pretty much cried off and on all day long. We were in a constant rotation of Lortab/clonidine. Lortab was working a little better, but neither lasted longer than 2hrs at best. We had to restrain her off and on and her super human strength has definitely been challenging! She's asleep at the moment, but I have no clue how long that will last. Something tells me it's going to be a long one. Feeling defeated.

Friday, November 21, 2014

Busy (super calm) day

Reagan slept well last night and woke up this morning still very calm and quiet. She was very serious but did give her nurse a couple little laughs (not mommy though). She had a busy morning of therapy. A make up session of PT, immediately followed by speech, and then school/vision. After school we decided to take advantage of her laid back mood and go to the aquarium. Mike was still off from work so this was his first time to go! Ryan was a maniac running a muck and was this close from getting bitten by a Macaw! Daddy was definitely giving him more freedom than I normally would, and he was taking advantage of it! He pried off a starfish from the touch pond, had his arms all the way in the ray tank, got stuck up at the top of the play scape and refused to come down! Thankfully Daddy chased him down most of the time and Reagan got double attention from her nurse and me! Reagan was great and nothing seemed to phase her, but she also had really good head control and eyecontact and seemed to be taking it all in. Tonight she was tired, but not falling asleep. Finally she dozed off on her own around 11pm. I was amazed at how still she was tonight. Sitting with her hands laying to her side, palm up. Way too relaxed. Hoping that doesn't mean she's about to take a turn already. Hoping I'm wrong and her good days continue.

Thursday, November 20, 2014

PM&R follow up

Reagan slept well last night and woke up this morning completely calm and content. She's been very laid back today. She's looked like she wanted to fall back asleep all day but never did! She's been very loosey goosey and still. She had a busy morning with OT & PT and then we packed up and headed in for a PM&R appt. We spoke to her doctor about the xrays she had last week, all of which looked OK. She has smaller than normal hip sockets (because she doesn't bear weight through them) but her hip bone fits perfectly within the socket so there are no worries there. She also mentioned that the scholiosis screen came back with a 14% curvature, but since she can't stand and the tests were done with her laying down, they aren't really accurate, so she estimates that at the absolute worst it's 14% but it's probably less. So again, she did not seemed concerned. She also mentioned that the bone age exam (that the endocrinologist ordered) came back completely normal. The bones that they check in the hand have not fused so everything looks fine (although her hormone levels clearly showed that she was in fact already entering into puberty). We also discussed Botox (the only nonsurgical option for loosening her beyond tight heel chords), and she is going to go over her previous medical records to see what type was used in the past to see if it might be worth trying again. She looked at Reagan's AFOs and said they are still fitting properly, but she did give us an order for new arm restraints as well as knee immobilizers (so she can work on standing while not in her stander). Reagan was a trooper! Such a sweet girl. She had multiple instances of hiccups today (and little burps). We definitely think something is bothering her digestive-wise but who knows what. Tonight she dozed off while we were at Bible study and Mike easily transferred her bed when we got home. Sleep tight sweet girl.
Such a good sport, with the Dr stretching her feet and her brother acting crazy!!

Reagan's old weekend nurse filling in tonight for our other nurse! So good to see her again!! 

Wednesday, November 19, 2014

Headed home (poosplosion)

Reagan slept well last night (in bed) and woke up this morning calm and collected. She did have a big poo on her own this morning, which is quite unusual for her, but it has been days since her last so was definitely time! This morning we packed up everything and headed back to Austin. It's not a terrible drive, but lots of construction make it a little more difficult. Both kiddos were well behaved though, so that was good. Our only mishap...Reagan had another giant poo about an hour away from home! We had to make the call whether to pull over somewhere and attempt to change her on my tailgate in the cold or just wait until we got home. We chose to wait and I'm glad we did. Reagan's nurse who came in for a half day today, met us just as we were about to unload, so we had all hands on deck! It was a MESS! It had leaked through the front, it was on her pants/sleeves/carseat harness/weighted blanket, so it's a good thing we didn't attempt to pull over to change her because there was no way we could have handled that mess on the road. We took her straight to the tub and she got a much needed bath! As often times happens, it's feast or famine with her and she had another big poo diaper this afternoon as well! Oh well, I'm sure she must feel better now! She just took it easy the rest of the day. Looked a little groggy but never dozed off until tonight. Such a good girl! Glad to be home but we're going to miss Grandma!

Tuesday, November 18, 2014

ICE cold but better

Reagan slept well last night in her chair. I didn't have to give her any more medicine last night and when she woke up, she was MUCH improved. She was a little serious, but seemed very calm (and obviously no more crying). We decided to go ahead and attempt an outing, so we drove to Grapevine to the Gaylord Resort for their ICE! Frosty the Snowman exhibit. It was a little windy/cold when we first got out of the car and Reagan almost got a little too excited. Thankfully we were able to get her in quickly and in front of a fireplace to warm up. My sister met us there and we headed through the hotel's Christmas wonderland to get to the exhibit. There was some loud music playing at the beginning of the exhibit (they had Frosty the Snowman playing), so we went ahead and put her noise canceling headphones on. As we entered, they gave us all parkas to wear (we all had on big coats already) because they keep it 9 degrees inside the exhibit to keep all of the ice sculptures from melting. Ryan threw a huge fit just as we were entering the exhibit so Mike had to carry him through most of it. It was SO COLD!!! Our hands and faces were seriously frozen. I feel like we couldn't really enjoy how neat it all was because we were SO COLD!! Ryan willingly went down the ice slide and then Mike and my sister followed and then I caved and went too. It was very fast! I'm surprised that Ryan did it twice! By the end we were just all happy to get out of there!Afterwards, we had lunch in the atrium of the hotel right beside the giant gingerbread house! Reagan did great with everything! I'm so glad we were able to get out and do something today (unfortunately my mom couldn't join us as she had to work)! Reagan really turned it around today. Tomorrow we head back home!

Monday, November 17, 2014

Sleep but bad day

Well my girl FINALLY got some sleep last bed no less! She was a little restless, but she stayed asleep (I knew she was going to stay asleep because she was sleeping with her hands up over her head...she only does that when she's sleeping well). Unfortunately, all did not end well...she woke up this morning around 8am crying! We've been seeing some signs of impending bad days, cold hands/feet, increased sensitivity, & sleepless nights, but I hate to ever mention it, in hopes that she'll prove us wrong and hold out for another several good days!! That didn't happen today. Exactly one week since her last bad day, today was definitely a rough one on my girl. We kept the arm restraint on her left arm, she was very bitey, but also still swiping at her already raw face. Poor girl. It was not good. Thankfully alternating her Lortab/clonidine helped to keep her out of pain and asleep most of the day. So with Reagan miserable, we were homebound all day. Mike was able to help my mom out with some home improvement repairs (he changed out 3 lights, one ceiling fan, a thermostat, & installed a dimmer switch)! While Ryan was napping my mom and I slipped out for a little post-birthday shopping for running gear. Tonight we're leaving her in her chair in hopes that she'll stay asleep and wake up feeling loads better! Please keep her in your prayers!

Sunday, November 16, 2014

Let it snow!

Reagan was back up again at 1am last night. Ugh. What's up with that? I don't think she ever went back to sleep. She wasn't upset or anything...just not sleeping. She was still in good spirits though this morning. Her face is still very red (like windburn on her chin, nose, and left cheek) so we've had to keep her hand away from her all day today. She's sweet and smiley, but definitely more sensitive than she's been. Today we went over to my sister's house. Ryan had a blast walking around trying to break everything (and finally got to watch Cat in the Hat on tv). Reagan got lots of attention and the dogs loved her! We ate some really good BBQ from Pecan Lodge and just hung out for a while. Ryan slept in the car but not my sleep for my girl! She did doze off for a few min after we got home but she was very restless, and as soon as Mike tried to move her, she was wide awake again. We did have a bit of excitement tonight when it started snowing! Ryan was SO excited! I took Reagan out to see it too, but she was SO sensitive I had to rush her back in quickly. Tonight she's doing the same thing she was doing this afternoon. She's exhausted and dozing off, but she keeps startling awake over and over again. Poor girl. I sure hope she can get some sleep tonight.

Saturday, November 15, 2014

Lazy day

Reagan woke up again at 1am! Mike tried laying down with her again, but she was just getting more upset. He moved her to her chair but she was still pretty kooky. Very vocal and agitated, but eventually she settled down. I don't think she ever went back to sleep. She was in the room with us so she kept waking us up making lots of noises. No one got much sleep! Thankfully she was still in a great mood today (despite no sleep). She was super smiley, but still very spitty and wiping at her face nonstop with her spitty hand (we eventually had to put her restraint on because her face was getting so red). It was a lazy sort of day. We all just hung around the house most of the day. I ran in the morning and then Mike played a little golf in the afternoon, but that was about it. Kiddos just watched cartoons in their elf pjs Grandma got them! Ryan is still fighting sleeping here. Lots of crying before he finally falls asleep! Reagan dozed off in her chair in the living room and we were too scared to attempt moving her. Prayers for rest!

Friday, November 14, 2014

Dallas bound

My girl woke up at 1am and she was not happy. Her eyes were still closed but she was thrashing and moaning and flailing. I tried to soothe her but it just wasn't working. I picked her up and moved her to her chair and she immediately calmed down...I don't think she ever fell back to sleep but she was calm so I went back to sleep. I was worried about where she was headed, but today actually turned out to be a good day. Reagan was sweet and smiley today, still very crunchy and super spitty (hands in the mouth a lot)! Reagan's usual nurse was out of town today so our weekend nurse was able to fill in and she was able to watch her PT work with her. Reagan was great and tolerated everything well. Speech was canceled due to her therapist being sick (no sickies allowed in this house)! The rest of the day was spent with me in a mad dash trying to get everything together for our trip to Dallas! Mike had some time off from work and wanted to go on a little vacation somewhere. We considered San Antonio or Dallas but Dallas won out since I have family there (and it's nice not having to pay for a hotel)! In the 5yrs my mom has lived in the Dallas area, we've only been to see her once and was only for a day! We weren't sure whether to leave today or tomorrow, but Reagan was still doing well so we decided to jump in the car and head up there tonight! Both kiddos were well behaved and even though we had to take a detour thru Waco (because of deadlocked traffic) and we stopped for gas/snacks, we made it there in 3.5hrs. Ryan was super excited and going strong and did NOT want to go to bed and cried a lot but he eventually went to sleep. Hoping my girl can settle down and get some sleep as well! Oh yeah, today was my birthday as well!

Thursday, November 13, 2014

Sweet and vocal

So, my kookapotomus girl decided to wake up at 5am this morning (no biggie, since I had to get up at 5:30 to run anyway)! She was super sweet and vocal and raring to go! She had PT this morning (with both her pregnant PT and the PT who will be taking over while she's out on maternity leave). They taped her neck/back with kineseo tape to see if maybe it will discourage her from leaning to that one side all of the time! We'll see. One exciting piece of news...Reagan is getting a new tricycle! The Freedom Concepts one that is much more customizable and will grow with her for many years. It's super expensive ($4500), but our insurance miraculously agreed to pay more than half of it and our PT's company also has a charity that assists kids in getting equipment. We were just notified yesterday that they will pay the remaining balance (minus 10% that we have to pay)! So that's awsome! The one she has now is way too small for her and we use it at all anymore (her knees hit the handle bars)! My plans are to donate that one back to AMBUCS so hopefully they can place it with a new kiddo. It's in mint condition so hopefully they can find a kiddo that it works for and make someone's Christmas! Very exciting! Hopefully we can get the new bike in before Christmas/the new year because our insurance is changing so we need to wrap this transaction up! Then this afternoon she had OT. She did well with that too. She's been quite the little turkey! Loving seeing her so happy, but it does seem borderline crazy at times! Hopefully she holds it together!
My girl, smiling from ear to ear in the wee hours of the morning! 

Wednesday, November 12, 2014

Smiley and sweet

It's been a good day for my girl, but super busy!  She's been super smiley and sweet. Very crunchy with hands in the mouth a lot.  She woke around 7am and then had an early session of OT. Shortly thereafter she had speech which was then followed by a visit from the vision therapist/teacher. We then hurried over to imaging to get a few xrays done. I forgot to mention but she had an appt last week with endocrinology (Tues Nov4). It was just a routine checkup but basically she said that all of the blood work and bone age workup showed that Reagan is in fact going through puberty. She did want to recheck her bone age (an xray of the hand) and also wanted her to start on a Vit D supplement (which we're just adding to her formula). Then since she's got an appt scheduled with PM&R next week and needed to get hip xrays and a scoliosis workup done, we figured we'd do everything all at once. Reagan was in a good mood, so we managed to get an appt and ran in after all of her therapies. Brother was napping in the car, so I sent Reagan and her nurse in where they then had to wait and wait and wait! Finally Reagan was beginning to get agitated (super vocal like she might freak out), so her nurse got them to move her to a smaller waiting room. There was a lot of confusion about the scoliosis check because apparently it's usually performed with the child standing...well since that's obviously impossible, they were a bit confused on how to proceed! Eventually they figured it out and we could leave. Hopefully the doctors get what they needed. After she got back home, she had "school" with her old teacher and her new teacher (shadowing). It's been SUCH a busy day but she has been quite the trooper!  More vocal as the day has gone on. Tonight she was getting super vocal and sounded like she might freak out, but Mike picked her up and she just fell asleep in his arms! Sometimes I really think she vocalizes like that because she wants our undivided attention and she doesn't stop until she gets it!! Such a cutie!
Serious love for this girl!! 

Tuesday, November 11, 2014


woke up around 1:15am last night. Reagan was making some noises, squirming around on the floor and had turned herself completely sideways! I picked her up and put her back in her chair. She fell back to sleep with the help of clonidine. And when she woke up this morning, she was SMILING! I couldn't believe it! I still can't believe it! She had two therapies today, PT and OT, both of which she wasn't particularly fond of (she was this close to crying at one point during OT...but I think it was the iPad that upset her). She preferred to just chill. She took a nice long nap this morning and this afternoon she's just been laid back and calm. Not really spitty, but putting her hands in her mouth a lot and having a lot of mouth movements (sticking her tongue out a lot).  She's been particularly fond of Mommy today! Each time I'd come and sit beside her and talk to her, she'd just light up! Super big smiles and lots of vocalizations (in a good way)! I love this girl! And boy and I happy to see her doing so much better today! Thank you for your prayers, today was Mike and my 14th wedding anniversary and what a relief to have our girl feeling so much better! Praying for more good days to come!

Monday, November 10, 2014

Bad day but could've been worse

Well, unfortunately I was right. Reagan woke up this morning crying! The loosey goosey girl we saw yesterday was headed for the bad. The calm before the storm. I was able to calm her down and I thought maybe there was hope for the day, but no, not so much. She was calm for an hour or so and then dozed off. She kept startling back awake, but she was OK and would just fall back to sleep. But then, right around 10:30am, she jolted awake and the tears started flowing. She was inconsolable. Her nurse gave her a dose of Lortab and that eventually helped her to fall back to sleep...but she was very restless. We have had to alternate Lortab and clonidine all day. Nothing seems to last longer than 1-2hrs and she pops back awake and starts moaning/crying! Poor thing. I have NO idea what is bothering her. This is one of those times we desperately wish she could tell us what hurts. Give us some slight clue as to what we could do to help her! But we have NO clue. Is it her tummy, muscle pain, bone pain, neuropathy, a headache/migraine??? We're clueless. Thankfully she was able to sleep most of the day today, so she wasn't nearly as agitated and aggressive today (no biting). Tonight when she woke up, I was able to change her diaper and then she just fell asleep on the floor. I moved her camera and just covered her up there. She was sleeping so peacefully, arms up above her head, I figured there was no use in trying to move her (and it was certainly better than her sleeping in her chair)! Hoping my girl wakes feeling much improved tomorrow. Thank you for keeping her in your prayers!

Sunday, November 9, 2014

Loosey goosey

Reagan slept well again last night. She woke right around 8am and she was super calm. Just laying there completely still in her bed, but awake. She's been that way all day. Very still. Very calm (I could get a laugh but I had to try hard). Very relaxed. Almost too relaxed! Her whole body was loosey she was super spitty and would occasionally choke on it. This morning we ventured back to church with Ryan and were grateful to find a very kind, experienced lady in charge of his newly assigned room. Hopefully this will be a good fit for him and we won't have to stress about what's going on while we're in church. This afternoon we loaded everyone up in the car and went for a scenic drive through the hill country. We drove through the Balcones Canyonlands Wildlife Refuge (that's not too far away from our house) and saw some beautiful landscapes...we'll definitely be going back there when we have more time! Tonight my sweet girl fell asleep in her chair before I could even pick her up! Such a doll. Hoping that we've still got more good days to come (and that this isn't the calm before the storm)...very busy day of therapies tomorrow!

Saturday, November 8, 2014


Reagan had a good day today. She slept well last night and woke up this morning calm and sweet! She's had a laid back sort of day. Not super smiley, but very content (and I could get a laugh when I tried). We went for a walk this afternoon while brother was sleeping. It was sunny but there was a nice breeze, so it felt great. Thankfully Reagan wasn't overly sensitive or the wind would have driven her crazy! Tonight I got a lot of snuggling in and just enjoyed my sweet, cuddly girl. Hoping for more good days to come!

Friday, November 7, 2014

A bit serious but good

Reagan woke up very calm this morning. Still no smiles, but very calm and collected. She had speech this morning...not sure how that went (I was outside with Ryan). Afterward we decided to take advantage of this laid back attitude and we loaded everyone up for a trip to the All Abilities Park in Round Rock. Ryan had a blast and I think Reagan probably enjoyed being out in the fresh air (although she was hard to read). I know they call this an "all abilities" park but I'm finding that there are some definite improvements they could make to make it more accessible to everyone. First and foremost, I hate their special needs swings! The hard harness on them gives absolutely no support whatsoever and seem to be better suited for an adult! They also are completely vertical. There is no tilt to them whatsoever! So Reagan kept falling out of it. It was not a good swing for her or anyone with poor head/trunk control. The swings are also in a completely unshaded area. It's VERY sunny and even though the weather was beautiful, we could only attempt to use the swing for a few minutes because of the blinding sun! There was another type of swing, but again, it was just too hard with not enough support for her to use without assistance. Reagan's nurse held her on it and I pushed them for a while. She seemed to enjoy that, although I think she could have done without the fast moving, noisy train that passed by the park every 10min or so! Ryan was enjoying running a muck with other kids. There was one little girl in particular who kept coming near him who he seemed to like. It wasn't very busy and I was happy to see that there weren't very many coughing kids out and about.  It would also be nice if there were some hand sanitizers throughout the park (wipes and gel), because there are kids all over this equipment and we had to wipe everything down with our own wipes before allowing Reagan on the equipment. Anyway...just my two cents worth! We had a good time and got back in time to get brother down for a nap! No school today because her teacher was left stranded with a dead car! Tonight we just took it easy and I cuddled my girl til she was out cold! She's my sweetie!