Monday, April 30, 2012

Laughing it up

Reagan didn't sleep much last night. She was too busy laughing. I think she slept a couple hours when we first laid her down and then she slept another hour or two this morning before waking up at 9:30am...all the hours in between she was wide awake and laughing up a storm. The laughing has continued all day today. It's good to see her happy, but this laughing is a little excessive and a little crazy. She's happy though and seems to be feeling better, so that's good. Ryan, on the other hand, has been a huge pain in the bottom lately. He's very high maintenance and wants to be held (more like breastfed) all the time! Right now he's crying it up wanting to be picked back up because he woke the second I laid him down. He does this crazy cry where he starts coughing, like he's choking...he's something else! He also makes this horrible face and gags when you try to give him a pacifier! He's a piece of work! Tomorrow he's got his 2 month follow up. No immunizations... we're waiting on those til he's at least a year old (and even then we'll only do one at a time)...second time around we're being a lot more cautious.

Sunday, April 29, 2012

Happy days are here again

Reagan slept the whole night through (as far as we can tell). She was still asleep at 7am (and looked like she hadnt moved a muscle) and at 8am she was wide awake and laughing and had kicked off all her covers! She's been in a great mood today...laughing and "talking" pretty much the entire day. She still has cold hands and feet and she's had the occasional cough that sounds a little gaggy, but all in all she's doing well and I think we're in for a good week this week!

Saturday, April 28, 2012

Getting better

Reagan slept most of the night with the help of Lortab & Ibuprofen. She woke up this morning at 7, just as the night nurse was leaving. She was still pretty fussy in the morning but as the day went on her mood improved! By this afternoon and tonight, she was actually giving us laughs!! Her hands and feet are still very clammy, but otherwise she's good. I hope this means we're done with bad days for a while! Thank you for keeping her in your prayers!!

Friday, April 27, 2012

Another rough day

Reagan had a rough night last night. She did sleep off and on, but that was only with the help of Lortab or Ibuprofen. As it started wearing off, she'd wake up crying. She's been the same way all day. She hasn't really been awake for any length of time without crying...that is, not until tonight. The night nurse came at 9pm and Reagan was still fussing. About 30min later she had really calmed down while the nurse was reading to her...then 30min after that she was asleep! She's been asleep ever since. I'm hoping she's finally starting to come out of this and tomorrow will be a better day. Thank you for keeping her in your prayers!

Thursday, April 26, 2012

They're back...

The bad days are back. We've had 9 good days in a row (for which we are beyond grateful), but the bad days are back in full force! It's been a rough day for my girl. She slept the whole night but then woke up this morning SCREAMING!!. Seriously. We're not talking crying here, she was SCREAMING!!We tried to calm her, but she was beside herself. We gave her some Lortab (tylenol and hydrocodone) thinking maybe it would help her fall back asleep, but it didn't help at all. An hour later, we gave her a dose of Motrin and minutes later, she fell back to sleep. She slept for two hours or so and then woke up crying, after that she was awake and asleep the rest of the day (but when she's awake...she's crying). We've been alternating the Lortab & Motrin...although it definitely seems to me that the Motrin is doing something (which would imply that there is an inflammatory process going on during her bad days). It's definitely been a rough day. She cries so much, her whole head is wet with sweat (and tears). It's hard to watch her like this. You feel so helpless. I just hope and pray she is able to sleep tonight and wakes tomorrow feeling at least a little better! Please keep her in your prayers!

Wednesday, April 25, 2012

She did it, she did it, she did it!!!

That's what Reagan's teacher always says..."you did it, you did it, you did it"!!! Reagan did it alright, she was good yet again today. I told her she needed to be good at least one more day and she listened! Last night, however, ended her sleeping through the night streak (at 6 nights again...we just can't get a full 7)!! She went to sleep around 11:30pm (after her clonidine) and then woke around 1:30am when her brother was fussing and giving me a hard time. Thankfully we had a night nurse and she sat up with Reagan because Mike was out of the country on business! Ryan and I finally got to bed around 1:40am. When I got up at 7:30am, I was relieved to see Reagan still smiling and laughing. Definitely an answer to prayers! Reagan has been such a good girl today. This morning I did smell a bit of the "bad day smell" on her, but her hands and feet have been toasty and dry all day. She has been a little sensitive to noises and had some crazy laughing here and there, been super spitty today and a little gaggy tonight, but hopefully she'll give us another couple good days! Mike got back into town this afternoon and our regular nurse will be back tomorrow, so I feel like I can breathe a sigh of relief.

Tuesday, April 24, 2012

One more good day...

Reagan slept well last night and then woke up happy yet again. Her hands and feet have been cold & clammy and her body has been hot & sweaty, but she's been a sweet, smiley girl all day today. She had speech, school, PT, & an hour in her stander and she was great for it all. Actually, my big concern is what tomorrow holds. The Wednesday nurse has already called in saying she wasn't feeling well, so I'm going to be flying solo tomorrow with both kids! Please pray that Reagan holds out and gives us at least one more good day. Ryan is a handful on his own...I don't think I'd survive a bad day alone with both kids!! Lots of prayers needed!!!

Monday, April 23, 2012

Long wait, short appointment

Reagan slept well again last night and woke up this morning around 9am. She's been a smiley sweet girl again today...which is great because we sat over 2.5hrs just in the waiting room to see her pulmonologist/sleep doctor!! It was excruciating! Reagan was patient but Ryan on the other hand, cried and was a real turkey! Both of them peed through their clothes and had to be changed in the waiting room! What a mess. At least we finally got to see the doctor and she suggested maybe we try motrin on Reagan's next bad cycle. We've always just used tylenol (which I've just recently heard is bad for kids with mito), but why not, we'll give motrin a try. Other than that, nothing groundbreaking. She's glad that Reagan has been fairly stable (mitochondrial-wise). She hasn't been sleepy today (like the last several days), so that was good to see her more alert. Her hands and her feet have been super cold and her back sweaty, but hopefully she'll hold out and give us several more good days!! We tried out a new nurse today, but she's just not gonna work out. Oh well. Hopefully we'll find a good fit soon, so we can give our current nurse some relief! We did take Reagan out for a spin on her tricycle this afternoon! She seemed to enjoy it, although we struggled to get her to keep her head up and hands on the handles! She did like the hello kitty bell I got her. She rode down several houses and visited with our 81yr old neighbor (Uncle Johnny) who just loves her! It's been an eventful day. Tonight she and her brother were laying on the floor together and I snapped a few pics of them...





Sunday, April 22, 2012

Sleep overload

Reagan slept all night last night and then didn't wake up til around 10:30am this morning. She was a happy girl though and her Grandma was the first to greet her! She's been a precious girl again today. Very smiley and sweet, but still pretty sleepy. She took a few long naps today. Everything else seems to be fine, but I can't help but worry about her...this is definitely more sleep than we're used to. Whens she's awake, she's a spunky girl. Hands constantly in her hair, kicking those legs around, crunching/rolling nonstop. She can't walk, but she sure does get a lot of miles with those legs! Tomorrow we've got our rescheduled appt with the sleep doctor/pulmonologist. Not a lot to go over, but I would like her to look in Reagan's nose/throat because she's been sounding a little congested/snotty the last couple days. I can't see anything, so I'm not really sure where it's coming from. Please keep it in your prayers that she stays healthy (it's probably just allergies). We're trying out a new nurse tomorrow too, so that should be interesting.  Hoping for an awake happy day tomorrow!

Big sister holding brother! He started off happy but it took me too long to get the camera!



Very interested in everything. He's already hitting at toys.

Saturday, April 21, 2012

Still sleepy

Quick post...Reagan slept the whole night through last night and then woke up this morning with smiles. She's been a sweet girl all day today...still very sleepy, but super sweet! She's taken multiple naps off and on all day today. Hopefully she'll be more awake tomorrow...Grandma's coming to see her!!


Last night...


This morning...

Friday, April 20, 2012

Sleep at last

Reagan fell asleep last night and then slept through the night and all day today!!!  She's done a lot of stretching and moved here and there, but she's been OUT. Poor girl, she's exhausted! She didn't have any therapies scheduled for today, so we didn't have to cancel anything. It was a cloudy, rainy day anyway here in Houston...she didn't miss a thing. She did wake up once tonight (with a smile) so I had a chance to change her diaper and clothes, but she wasn't awake long and then she was back in bed. Hopefully she sleeps through the night and wakes up in the morning feeling refreshed and happy!

Thursday, April 19, 2012

Happy girl but still not sleeping

Reagan didn't sleep much last night again. She slept about three hours in her therapy room (with the night nurse) and then spent the rest of the night up laughing again! So no real sleep but at least she had a good day! She's been a happy, laughing girl again today. She had lots of therapy again and did great for all of them! Tonight she finally started to look tired and fell asleep on her own (and she's finally back in her bed)...hopefully tonight is the night she finally gets some rest!!!


Sorry not the best resolution...cell phone pics!

Reagan in her new stander (hands in her mouth, hands in her hair)!






Reagan and Ryan

Wednesday, April 18, 2012

Laughing but still no sleep

Reagan slept some last night, but not much. She was awake and laughing for a good portion of the night. She had a huge blowout diaper waiting for me this morning when I went in to get her (the kind you can smell from the hallway)...maybe she was laughing about that?!?! She's been a super good girl today. Lots of smiling, laughing, and vocalizing. She's had several throw ups today...probably because I mentioned in my post last night that she hadn't been nauseous in a while. The thing is, she hasn't really been nauseous per se. No retching or gaggy faces. She's just had several random throw-ups. Her hands and feet were still clammy this morning but they're much better tonight. So although some things are still definitely "off" and she still hasn't had much sleep, it's hard to call days like this "bad days". I'm hoping she'll get some sleep soon and hang on to those good days so Grandma can see her happy this weekend! I'll leave you with some pics from the last time Grandma was here...she's holding him (because he likes to smile for her) and I'm taking the pics...











Tuesday, April 17, 2012

Better day

Reagan was awake a lot last night but at least she was in her bed and most of the time she wasn't crying. This morning she was still slightly on edge, but overall she was OK. As the day went on, it was clear that she had turned a corner and was headed out of this bad streak. She's still got cold clammy hands and feet and quite a bit of chorea, but she's been in a decent mood all day today. No smiles, but a few laughs. She had 4 therapies today and actually tolerated them well. The first was speech and her therapist was very impressed at how well she did. Then she had OT, "school", and finally PT. At the end of PT her therapist put her AFOs on and put Reagan in the stander and she stood in that for a good hour as well! That's a lot of therapy for a girl who didn't sleep much and is only on her first day out of bad days! What's miraculous about all of this is that she only really had two "bad" days (and her last bad streak was exactly the same...only two real "bad" days)!!! And, to top it all off, no nausea!! That's a HUGE improvement! I'm pretty excited about this and I just hope and pray that it stays that way (or better yet...NO bad days)!!! However you look at it, this is certainly a step in the right direction, so please keep those prayers coming!!! Last night was actually one of Ryan's best sleep nights yet! Now granted, he didn't go to sleep til 1:30am, but after that he was great! He woke up once around 5am when I got up out of bed to go to the bathroom (otherwise he probably would have kept sleeping) and then he fell back to sleep and slept through til 8:45ish. Below is a picture of him "sleeping in" in our bed!

Monday, April 16, 2012

Fussy day

Last night was not a good night for Reagan. She was asleep when we went to bed but woke up crying shortly thereafter. Mike got up and gave her a dose of Lortab and almost immediately she dozed back off. She slept til 3am and then woke screaming crying again. Mike got up and tried to console her, but she just got even more upset. He put her back in her chair and then she was just moaning. She was awake (and moaning/fussing) from 3-7 and then finally dozed back off til just before 9. She woke up crying and was in a horrible mood. I gave her another dose of Lortab and she fell back to sleep within 10minutes. It didn't last long though and she was back awake (and crying) by 11:30am. Her speech therapist came at 1 and Reagan fell asleep in her arms. She held her for the whole session and then Reagan woke back up when she had to leave. She was still pretty moany/fussy (but not crying) and continued to fuss til sometime around 3pm...when she just stopped! She was still having a ton of chorea but the fussing had stopped. She was good for the most of the latter part of the afternoon/night. She started fussing a couple times, but we think it was just gas. I'm not sure about sleep tonight but I'm hoping she'll stay calm and get some rest. Please continue to keep her in your prayers.

Sunday, April 15, 2012

Screaming bad day

Sorry about the late post again! Reagan slept the whole night through but then woke with a BANG this morning screaming bloody murder!!! This continued the whole day...only stopping to nap here and there (not sure if the Lortab or the fatigue aided in that). Reagan was completely and totally miserable. Mike and I had to divide and conquer (otherwise they would just feed off of each other). He stayed in the living room with Reagan, while Ryan and I stayed in the spare bedroom. It's been a loooong day. I was assuming this was just a regular bad streak since she's been showing all the signs in the days leading up...but when I changed her diaper this morning her bottom (in the front especially) was really red. I texted her pediatrician (yes I have her cell #), and she said it might be a yeast infection. She told me to put lotrimin and 1% hydrocortisone cream on it. If it doesn't look better by tomorrow then we'll take her in. Poor thing...like she doesn't have enough problems. Im just hoping and praying she'll sleep tonight, otherwise we're in serious trouble. No night nurse tonight. Please keep her in your prayers!

Saturday, April 14, 2012

Crazy day

Last night was a little rough, but that's more of Ryan's fault than Reagan's! Reagan slept most of the night but woke around 6am talking and laughing and squealing! I was worried what this meant for our day, but she's actually been OK. Lots of crazy laughs, but she's managed to keep a smile on her face all day. Every now and then she'll yell out in this high pitched scream, but then she just laughs about it (like she's laughing at herself). Her hands and feet are still ice cold and she's super sweaty and clammy, but she's managed to hold it together and have a good (slightly off) day. Ryan has been a turkey though. Last night and then again tonight. Super restless and fussy...I don't know if I'm ever going to get him to sleep!! Please keep us in your prayers!!

Friday, April 13, 2012

Still smiling and 6 weeks old

Reagan slept last night, but it was a restless sleep again. Of course Ryan gave me a much more difficult time (I didn't get to bed til 2am because of him)! Thankfully, my girl woke up smiling again this morning. She's been a good girl today. The chorea has definitely picked up and she's super sweaty/clammy, but she's been sweet and smiling so we're happy for that. She had vision therapy and OT today and she did a good job for both. I'm still hoping she can fight the bad days off and give us a super long good streak...she's definitely due for one of those! Please keep that in your prayers. Today Ryan turned 6 weeks old. He's got a lot of personality already. He's always grunting or making some kind of noise. I weighed him yesterday and he's already over 13lbs! Big boy. He's a trouble maker though...yesterday he soaked his changing table with pee (twice) and today he had a poopy blowout that got all over him and me! His head control and even trunk control is very good and he's already shown proficiency in rolling...he's quite the show off! Sleep, well, that's the area we could use some improvement. We've been cosleeping so that I can breastfeed him through the night but he basically has just been using me as a pacifier. So the last couple nights I've been putting him in his swing...he'll sleep 1-2hrs and then wake up to eat. I'm not a fan of using the swing, I'd prefer for him to be in his own bed. Problem is, he likes to be moving or held, if we lay him in bed he's super restless and just doesn't stay asleep long at all. So for now, I guess we'll just do what works and eventually we'll get him in his bed, right?!?!


My mom made this feather egg and we took Easter pics of Ryan in it!

Thursday, April 12, 2012

Still a little off

Reagan slept last night...but she was very restless. About half of the time I looked at the monitor, she was moving around. She woke up this morning around 8:30am, but then was back asleep by 10! She did this off and on throughout the day. I'm not sure what is going on with her. Maybe she's just tired because she was so restless last night. I don't know. It does worry me a little. I don't think she's ever had three sleepy days in a row. She seems a little off. I just hope she's OK. Today they came by to adjust her new stander (they delivered it almost two weeks ago). Her PT was here and helped us in the process, but it took a whole hour to get it figured out. It's the Leckey Horizon stander. I'm not crazy about it, but at the time, it was the closest thing available to her Leckey Squiggles stander (that she had outgrown). Now, only a couple months later, they have unveiled a new stander that's almost identical to her Squiggles one, only bigger (the Leckey Mygo Stander). I almost wish we would have gotten that one, but our insurance approval had already gone through on this one and if we tried to switch it, we would have had to start from scratch! Oh well. Hopefully this one will do the trick. She had completely outgrown her Squiggles and couldn't even use it anymore! We're still looking for a home for that stander (we already found a good home for her Squiggles positioning chair). Tonight Reagan was a little more animated. She was being very vocal and had a lot more spunk! I think that's a good thing...we'll see. I am a little concerned because she had cold hands and feet tonight and was definitely more serious than she's been in days (and I hate to admit it, I smelled the "bad day smell" on her head tonight). I'm so not ready for bad days. Please keep it in your prayers that she can hang on and fight those bad days off (or have a short/mild bad streak at the very least).

Wednesday, April 11, 2012

Smiley but sleepy

Reagan woke up last night when we changed her diaper, but then went right back to sleep minutes later. I wish her brother would have been that cooperative (I didn't get to bed til 1:30am)! Reagan slept the whole night and didn't wake up til 11:45am this morning when I changed her diaper!!! Her speech therapist was here waiting for her, so our smiley girl had therapy (and actually did quite well). She was starting to look tired again but we managed to keep her awake til her teacher got here. She stayed awake til right at the end of their session and then dozed back off again. She was awake for a while (although most of the time she still looked pretty sleepy) and then around 8:30pm she fell back to sleep. I guess this girl needed some serious rest!! Her cheeks were a little flushed and her head felt a little hot, so I checked her temp. It was 99.5...I wonder if that's from her teeth coming in? Well, hopefully she has a more awake, happy day tomorrow!

Tuesday, April 10, 2012

Sleepy day

Reagan slept all night last night and then just continued sleeping!! She didn't wake up until just before noon...just in time for school!! Her teacher was happy to see her so smiley (even if she had just woken up). She was a precious girl. She started looking tired just as the teacher was wrapping up...and then she looked like she was waking back up again...and then she was OUT. Her PT came and just stretched her feet really well and Reagan didn't budge. She slept the rest of the day and then into the night. She's still sleeping now! Poor girl. I guess she needed it. This was her "catch up" day of sleep. Hopefully she wakes rested and ready to have a wonderful rest of the week!!! It's so nice to see our girl happy!



Happy pic from yesterday.


Ryan weighs in at 12.8lbs now...and he's not even 6 weeks old!!!


This is his smirk smile...

Monday, April 9, 2012

Better days

Reagan slept some last night. She was very restless and moved around quite a bit, but we think she did get some sleep. Then around 6am I woke up to a banging noise. I was a little paranoid until I realized it was Reagan kicking the side of her bed over and over again! She was good though and laid in bed til 8am. She was a happy girl today. Less laughs, but lots of smiles and a little "talking". This morning we went in to the medical center for a routine visit with her pulmonologist/sleep doctor. Not for any particular reason, we've pretty much exhausted our options in getting her to sleep, but we do have to continue to follow up with her. So we get there, Reagan and Ryan in tow, only to find out that the scheduler (who scheduled our appt), scheduled it for the wrong day!! She had given me two options for appts...this Monday or next Monday. I told her I wanted this Monday, she however scheduled it for NEXT Monday!! I was so irritated! This was the 4th time in 4 weeks we've been to the same doctors office (different doctors) and 3 out of 4 times not seen a doctor!!! Ugh. So then we came back home and Reagan had back to back speech therapies and then hung out with Grandma. She was being especially precious today, so we set up a little photoshoot and took some pics of her. It's been so nice to see her feeling better. Not sure what's going on though because she didn't really go through a typical "bad cycle" and she still hasn't had a sleepy day where she catches up on her missed sleep. This girl...she's so hard to read! We just never know what to expect with her. The cold clammy hands are gone and she's still having some chorea...but more of her typical movements and less of the nonstop moving, moving, moving. She's also still pretty spitty, but that could be related to her teeth coming in. I'm hoping tonight will be her night and she'll finally get some restful sleep. Sweet dreams princess!!!

No sleep, but laughs?

Sleep last night was not happening for Miss Reagan. She was either crying or kicking and flailing all night long. Then this morning it seemed the tide had changed. She still had a ton of chorea, but she seemed happy. Lots of laughing. Crazy laughs, but laughs nonetheless. Not sure really what's going on. This is not the typical pattern she follows with her good/bad streaks. She would normally have a sleepy day before we'd see her happy or laughing...so I'm not really sure what's going on. She's been a laughing girl all day today! Grandma came in this morning and was so glad to see a happy girl. We even got some pics with the Easter bunny this afternoon! (I'll post Ryan's pics tomorrow.) I hope everyone had a Happy Easter! Please keep up the prayers for sleep...we all could use some!!






Saturday, April 7, 2012

Crazy chorea

Reagan didn't sleep a wink last night. She spent the entire night in her chair...kicking and flailing and crying off and on. Poor girl. She was still pretty miserable this morning but eventually she chilled out and has been pretty good all day today. She's still pretty zoned out and she's had horrible chorea and her hands and feet go from warm and clammy to ice cold and clammy...but she's been fairly mild mannered most of the day and we've even gotten some laughs out of her. Her speech therapist even came by and worked with her to make up for a missed session on Friday. Unfortunately tonight she seems to be getting herself more and more wound up, so I'm not sure if sleep is going to happen. Please keep it in your prayers that the clonidine will work and she'll be able to get some rest tonight and have a better day tomorrow! The Easter bunny is coming tomorrow (ie Grandma).

Friday, April 6, 2012

Still miserable

Reagan actually got a good amount of sleep last night. She fell asleep around 9:30pm on her own (she had a dose of Lortab at 6, but still hadn't had her dose of clonidine). Her nurse was here and she sat with her in the living room where she slept in her chair til 5am. That's when she woke up screaming. At 5:30am she gave her another dose of Lortab and she fell back to sleep til right before 8am. This morning she was in a decent mood, she was still off, but she wasn't crying and she actually gave us quite a few (crazy) laughs! Then she took a nap and when she woke up the crying started back up again. She's been crying off and on (and holding her breath til she turns purple) all night. When she's not crying, she's extremely agitated and kicking her arms and legs around nonstop! Poor girl. She's still miserable. I'm hoping the clonidine will work and she'll get some sleep tonight. No nurse...just us tonight. Please continue to keep our girl in your prayers! She needs a better day tomorrow...

Thursday, April 5, 2012

Beyond miserable!

Reagan did not sleep through the night last night. She did however get a decent amount of sleep in her chair. She woke up around 12:15am right as I was crawling into bed. Her nurse left her there for a bit but she kept talking to herself and was obviously not going back to sleep, so she went and picked her up. That's when the crying started. She cried inconsolably for about an hour and then finally fell back to sleep around 2am in her chair. She slept there til around 9am this morning. Today she's been pretty much screaming crying every waking moment. It's times like these that we just don't know what's going on with her. Is she in pain? She sure seems to be, but who knows. This morning the crying was going on and on, so we finally gave her some Lortab. It seemed to help because she fell back to sleep less than 10 min later. She's been sleeping off and on ever since. When she's awake, she's hysterical. Crying her breath away til she's purple. Her poor little voice is all deep and hoarse. She's sweating up a storm and you can feel her heart pounding out of her chest, but her hands and feet are completely dry and warm. Our night nurse is coming again tonight, so that should be good (especially for Mike). I just hope Reagan pulls out of this fairly quickly because Grandma is coming to see her this weekend for Easter (you know, Grandma is the Easter bunny)! Please keep our miserable girl in your prayers!!


video

This is a video from her last bad cycle. This is more moaning...today we have more crying...both are horrible.

Wednesday, April 4, 2012

Praying those bad days away...

Reagan slept through the night again last night!! That's 6 nights in a row...can we go for a full 7?!?! That would be awesome! I'm so glad that my girl has been getting such good rest...Lord knows she needs it! Tonight and tomorrow our night nurse is working, but I hope Reagan sleeps and she has nothing to do!! Reagan wasn't as smiley today but she was content and that's all I care about. She did give us some crazy laughs tonight, and even though they were a little crazy, we enjoyed them nonetheless. The "bad day smell" is still there and she was still a little gaggy today, but her hands and feet were warm and dry. I'm hoping she'll pull through and skip the bad cycle this go round! She certainly could use it! Thank you for keeping her on your prayers!

Tuesday, April 3, 2012

Busy but good day

Reagan slept well again last night...I sure wish her brother would follow suit! We were very happy to see smiles again today when Reagan woke up! We had a super busy day and really needed her on her best behavior! This morning we had an appt with her mitochondrial doctor (really just to get labs/urine for the Stanford study). Reagan was so good for her blood draw...this girl is a pro. She barely even flinches when she gets stuck! Then we drove home and she had just enough time for both OT and PT. Then we immediately hopped in the car, drove by the lab to drop off her urine specimen, and then back to the medical center for an appt with her PM&R doctor. Again, this was just a routine follow up. Her doctor does think we need to see about getting her a bigger stroller to get around in (she thinks the wheelchair is just not practical for things like doctors appts and I have to agree). She recommends the Maclaren Major...the special needs version of the stroller we currently have. We'll have to see...I'm not sure if we can get a stroller covered now that we already got a wheelchair! We didn't get home til 6pm!!! Talk about a crazy day! I'm just glad that my girl was so well behaved and happy (even when her brother was being a turd). Everyone enjoyed seeing Ryan at the doctors appts. He did best in the car (he likes the movement) and although he was a pain at times (making me carry him through the hospital while pushing his stroller), overall he did pretty well. He was really smiling it up for the PM&R doctor...and then he puked on her! We really have to get some video of him. His gummy smile is just too funny and he's so noisy with all of his grunting...I just have to get it on tape! Reagan was great all day. I am a little concerned because she's been a little sensitive to noises tonight and I can definitely smell the bad day smell on her. She was also a little spitty today and tonight she made a few gaggy noises. I'm hoping and praying she can hold on and not go into a bad cycle this go round, but I'm super grateful that she's done as well as she has these last five days. Please keep her in your prayers!

Monday, April 2, 2012

Nurseless

Reagan slept well last night but Ryan kept me up with his grunting. We had smiles again today, so thank you for those prayers! Reagan had speech (private), school, & speech (school) and she did well for all of them. We were nurseless today but on a good note (another answer to prayers), our nurse was cleared to come back to work tomorrow. That's really good news because we we have two doctors appts scheduled for tomorrow. I'm hoping my girl will give me at least one more good day...otherwise tomorrow is going to be a long one. Today Ryan turned one month old! He's finally starting to smile more. Usually it's a one sided lip raise, but lately he's also giving us more of the full all gums smile, which is pretty cute. He's definitely a character! I sure hope he lets me get some sleep tonight...

Sunday, April 1, 2012

Active

Reagan slept through the night again last night. She woke up smiling and has been a good girl all day today. She's been very active. Moving, moving, moving. Super rolly polly...we had to constantly keep moving her back on her wedge because she'd wiggle her way all the way off of it. Her hands have been in her hair all day today as well. One concern we do have though is that she's been a little clammy. She also got the pouty lip and teary eyes for Daddy this morning. I honestly can't deal with bad days yet...we've only had three good days...it's WAY too soon for bad days. Tuesday we've got two doctors appts scheduled...so we really need a good day. And to top it off, the nursing agency called tonight to let me know that we won't have a nurse Monday! Great. I'm so sick of this agency. Please keep it in your prayers that Reagan is good tomorrow because she really needs more good days and I need to be able to make it through the day with both kiddos!!!