Wednesday, October 31, 2012

Bad, but could have been worse, day

Sorry for the late update! It was not a good day for my girl. That being said, for the first bad day, it was a relatively mild one. Reagan woke up crying and was definitely stressed and upset when awake, but she slept a lot and as the day went on, she definitely improved. By the time our guests started showing up, Reagan was tense but quiet. It was quite noisy at first, so we kept her in her therapy room, and we were happy just to get her costume on. We were able to finally bring her out while the kids were trick or treating (this is her first year to miss), and then as everyone came back she was able to acclimate herself and she handled it well. She even dozed off on her own around 9pm (so I held off on her clonidine again and figured she could just take it in the am)! She's such a sweet girl! I only wish she would have had a better day! Here are some Halloween mom worked her bottom off decorating and buying everything Halloween she could find! (I'll post outside pics once she sends them to me!)

Tuesday, October 30, 2012

Not good

Reagan was up a lot again last night. She would fall asleep and then startle back awake. I'd look at the monitor and she'd be moving around, then I'd look again and she'd be still. Who knows how much she actually slept! She was still in a decent mood this morning. Not super happy, but still giving us smiles. As the day went on, it was more obvious that she was on edge. Her heart rate was up, her hands and feet were cold and damp, her whole body was more tense. She had OT this morning and then PT this afternoon...she had a great session with OT, but was already much 'more stressed by the time she had PT. This afternoon she had a big meltdown and she cried for about 15min. I gave her some Lortab and she calmed down, but you just couldn't mess with her at all after that. Tonight she freaked out a couple more times, but much more minor. Tonight she dozed off around 9-9:30pm in her chair and Mike was able to transfer her to her bed at 10. No clue how long she'll last there, but it sure would be nice if she could get a good night's sleep tonight! I just hope and pray that she doesn't wake up crying tomorrow! We can handle stressed, but hysterical just isn't going to be fun for anyone on Halloween!!! Please keep our sweet girl in your prayers!!!
(if interested, please see my last post for the stroller review)

Stroller Review (Maclaren Major vs Special Tomato EIO Push Chair is the long anticipated stroller review. It's a little anticlimactic, while I have lots to say about each of them, I'm still unimpressed with what's out there. There are things I like and things I dislike about both of them...if only we could take some of the features from each and make our own custom stroller!!!! So without further ado...

The Maclaren Major  delivered 10/09/12 (most of the add ons came a couple days later...still waiting on the shopping basket)

-it's very low profile (folds easily and is compact like a typical umbrella stroller, despite having a much more heavy duty frame)
-is lightweight (16.5lbs)
-it moves easily, smaller footprint
-it sits much higher off the ground (her feet were nearly touching the ground in her triumph)
-it has a rain cover (for an additional $57.95)
-high quality construction/materials (fabric, straps, buckles, etc...)

-it's very open, almost looks unsafe (I purchased the padded laterals which do fill in the sides and provide a little more stability to the whole thing, but they have to come off before you can fold it and they are made of styrofoam so they're a little hard and bulky)
-I'm a little afraid she'll kick the footplate (or the bars behind it) with her feet and hurt herself...but the footplate does come off (the bars behind it don't)
-seat depth is lacking (the triumph was 9", this is only 10")...doesn't provide much support
-everything has to come off before you can fold it (sunshade, foot plate, lateral supports)-that's a big hassle just to get it in your car
-the price- it was $526.95 for just the stroller with footplate (the sunshade $57.95, the shopping pocket underneath $47.95, seat padding $68.95, chest pad $33.95, & padded laterals $44.95 are all additional costs...making it $780.70 almost double the price of the other stroller)
-the sunshade is fixed (so you can't move it to block the sun and you also can't push it back when you don't need it...your only option is to remove it)
-the rain cover only works if you have the sunshade
-fixed 25 degree recline (You can't move it at's never completely upright, but neither is the other stroller, and it also can't recline any further so it wouldn't be super comfortable to sleep in and if we needed to change her diaper, changing it the stroller would not be an option.)

My question is...why can't they design this better...more like their "typical" strollers?? Why don't they have a built in, foldable sunshade on it, why doesn't it come with a shopping pocket underneath, and why does the fabric not wrap around the bars on the side...all things that come standard on their "typical" strollers which are 1/3 the price!!  (We're having this same issue with our Britax special needs carseat...which has a flimsy, worthless headrest that is sub par compared to the headrest on their "typical" Boulevard carseat that is 1/3 the price!)

This is the Maclaren Major as it comes (pretty sparse)

The Major compared to the Triumph

The Major with all the add ons (minus the footrest)...see those bars behind her feet? Her therapists are afraid she could get her foot caught in them!

The Major the way we would probably use it (without the sunshade) can see that the seat depth is just not great with it. There's not a lot of support behind her knees because of it...but how important is that just for short trips to the doctor? I don't know?

The Special Tomato EIO Pushchair (delivered 10/12/12)

-variable recline (25-75 degree)
-price (at $449.95, it's half the price of the Maclaren)
-everything comes standard (the padded seat, sunshade, shopping basket, lateral supports are all included at no extra cost)
-better foot rest (it can be at multiple angles and provides more leg support...there's more of a chance Reagan would use this one, but it can also be moved out of her way as well)
-easy to push (wheels seem to move easily handle bar is adjustable)
-you don't have to remove anything to fold it (and unfolds easily and quickly because everything is already attached)

-cheaply made (straps, buckles, snaps,'s just not the same high quality as the Maclaren)
-complicated to fold (the seat back has to be all the way down, the foot rest has to be down, and the clamps that have to be unlocked to fold are not easy to manipulate)
-still HUGE when folded
-feels much heavier (22lbs)
-bulky sunshade (while this can be taken off, it's made to be attached and looks a little strange when not on)
-not a lot of support (I have the straps as tight as I can get them and they still are loose and not supportive and the laterals don't provide much extra support either)
-the extra fabric from the seat doesn't fold away neatly and it sticks out near her head (same thing for the sunshade)

I feel like this is more of an intermediate stroller, somewhere between an umbrella stroller and a jogging stroller. It's way too bulky to be a true umbrella stroller, but not enough maneuverability or comfort to be a jogging stroller. We would get this one hands down if it would just fold like an umbrella stroller...but truth be told, it doesn't even fold up to the size of our larger jogging stroller!! I'm afraid it's just too bulky to be our easy in and out stroller!

Side by side comparison...(these are my measurements...differ slightly from the ones posted online)

Maclaren                                   Special Tomato
21"             seat back height        23.5"
10"               seat depth               11.5"
15"         seat width w/o laterals   13.5-14"
11.5"        seat width w/ laterals   9" at narrowest point
13"            dist to ft rest               12"
              @ lowest position
110lbs         max child weight       90lbs
21x28(33)  dimensions (w/handle)   23x36(44)
1yr             basic  warranty         2yr

Looking at the specs, there appears to be more growth with the Special Tomato, but the weight limit is higher with the Maclaren. Doesn't make a lot of sense. If I had to pick one right now, it would probably be the Maclaren. It's light and compact...which is really what I wanted for doctors appts and quick errands. It's more expensive, but it's more sturdy and looks like it will last longer. We know Maclaren, we like Maclaren (and I wanted to like the Major). Our triumph is still in perfect condition and we've used it A LOT! My hesitation, and it's a BIG one, is really the safety issue with the bar behind her feet and the fact that the seat depth is severely lacking. IF the special tomato collapsed better, I would probably just get that one, since the seat depth is better and so is the footrest. But it's so huge, I just can't go with that one! So since I don't really have to pick either...I've decided to ship both of them back and just make due with our current jogging stroller (Baby Jogger Summit XC) for now and look into getting the next step up...the Baby Jogger Liberty! I sure hope I was able to help some of you in your stroller hunt...I hope this was not all for naught (especially since it cost me $60 in shipping just to send back the special tomato stroller)!

Monday, October 29, 2012

Great day

It's been another GREAT day for my girl! She didn't sleep much last night, she spent most of the night talking and kicking around in her bed. She slept some...but not much. Thankfully, that didn't seem to affect her mood much and she's been a smiley, happy girl all day today. She had vision therapy, speech therapy, and OT today and she did well for all of them. We also snapped a few pictures of her and her brother in their Halloween outfits (these are from my mom's phone...I have more that I took on the real camera, but haven't had time to download them yet). Please keep it in your prayers that the good days keep coming for our girl!!! (stroller review tomorrow)

Before fixing her hair...

After...fixed, if only for a few seconds!

Sunday, October 28, 2012


Reagan has been a smiling, sweet, darling girl again today. Mike coined a new term for her...Cute-iful! And cute-iful she is! She's continued to be vocal and at times a little on edge (we had tears at one point but she fought it off)...but she's held on and had another good day! Please keep it in your prayers that she has a good Halloween! We're having people over and I SO want Reagan to be happy and have a chance to enjoy herself!! Come on good days....

Saturday, October 27, 2012

Still smiling

So this is what I get for posting about how well Ryan was sleeping! Last night he woke up twice and then today he has been horrible not wanting to take naps at all! Reagan slept well for most of the night, then woke up and was talking, then went back to sleep again and slept til 7:30ish. Reagan has been a good girl again today. Very smiley, very snuggly, very vocal (at times sounding a little on edge, but always keeping the smile on her face). She did have one little mishap this morning. She had dozed off in her chair for 15min or so and then all of a sudden, she was throwing up (in her sleep)!!! She never even woke up and no more nausea/throw up the rest of the day! It was very weird! We took another walk outside in the beautiful weather today, while Ryan took his only real nap (30min). Grandma is coming in tomorrow to help us get ready for Halloween. We're going to have a little get together this year. Each year my mom goes all out and decorates like crazy and no one ever gets to see it! So we're having a few friends and family over this year! Reagan is going to be little red riding hood, Ryan is the wolf, and Grandma is the wolf that has eaten grandma!!! Hopefully Reagan cooperates and either has enough good days to make it through Halloween or gets rid of her bad days ASAP! I remember last year Halloween didn't fall on a great day for her. She was tense and on edge...I don't think we got any smiles! Hopefully this year is different! Lots of good days for my girl!

Friday, October 26, 2012

Smiley girl

Reagan slept like a rock last night...finally! And not only did she sleep last night, she continued sleeping til 11:30am!! She might have even slept longer, but the nurse and I were hooking her back up to feeds and we woke her up! She woke smiling and I'm happy to report, she's continued smiling all day long! We were a little worried a few times because she's been VERY vocal (and sometimes that can turn into tears), but she's kept her cool and stayed happy all day. Her bottom looks better. You can still totally see the patch, but it's not red at all anymore (I never heard back from the pediatrician's office about that dermatology appt they were supposed to who knows what happened with that). The only therapy Reagan had today was vision therapy and according to her therapist, she did very well. Afterward, her nurse took her for a nice walk in the cool air. It's been a good day for my girl! Hoping to have many more of them! Ryan is still sleeping like a champ! It's amazing to see what normal is like! For the last several nights he's gone to bed (in his crib) around 8-9pm, slept til 3am (wakes up and eats), and then goes back to sleep til 7am!!! It's AWESOME!!!


Reagan didn't sleep much at all last night. She was very vocal and just kept kicking around and talking all night long. Her brother, on the other hand, slept better than he has ever slept! He went to bed at 9pm and slept til 3:45am, I picked him up and fed him (in his room) and put him right back in bed, where he slept til 7am this morning!!! Can you say AWESOME?!?!? Reagan woke up with smiles this morning and she's been a really good girl all day today. There have been a few times where she starts vocalizing like she might be getting a little agitated (like when the yard guy was blowing just outside her therapy room), but as long as you redirect quickly, she's fine. This morning her hands and feet were still cold and clammy, but they warmed up and have been fine the rest of the day. Her bottom was still pretty red, but the inner part of it seemed to be fading (and getting a little flakey/dry). Reagan's speech therapist had recommended putting some coconut oil on it (her daughter gets terrible eczema and it really helps her) today I bought some and put it on this afternoon. By tonight it seriously looks loads better! No redness whatsoever, you can barely even see it anymore! I don't think it's a coincidence! Tonight Ryan and I went to the monthly Mito moms dinner. There were seven of us there this time and we had a really great time! Ryan was a little unruly at times, because he had only taken a short nap before getting there, but he crashed in the car on the way home and has been sleeping ever since! So nice to have a sleeping child!!! Praying my girl gets some sleep tonight as well!

Reagan's new pump backpack! Super cute! (As seen on Ava's blog) You can get your own on Etsy!

Wednesday, October 24, 2012

No bueno

What is going on?!?! My girl is still not good. She slept OK last night but she was very restless so she slept the majority of the night in the night nurse's arms and then part of the morning on the floor of the therapy room (and she kept sleeping til 10:30am or so). She woke up OK, not happy, a little startled and serious. She was alright though and at noon she had a decent speech therapy session. She was holding her pee though and when she finally went again, I checked her bottom. Still very red, and now it seems to be extremely painful to her. I spoke to the pediatrician and she wanted us to bring her in at 3. So as the afternoon went on, she was getting increasingly aggravated. At the doctor's office, in the car, once we were home...she was borderline in tears. Lots of fussing, lots of chorea, lots of yells...just not right. I tried Lortab...nothing. Her doctor prescribed her naproxen for the inflammation, I gave her a dose when we got home and it hasn't seemed to help (and she had a little redness on her face and chest that made me think she might have had an allergic reaction...but she was crying, so it's hard to tell). Right before Mike got home, she had a total meltdown! She seemed to warm up to him though and tonight she's been stressed (with occasional outbursts) but no more tears. On a good nausea today. Ryan also slept in his crib last night from 8-3am (7hrs...I'll take that)!! He woke once at 9pm and was moving around and appeared to be wide awake, but a little shushing and he fell back to sleep. Of course laziness set in and at 3am I did just pick him up and put him in our bed. I know I probably should have fed him and put him back in his crib. Maybe tonight. Please continue to keep my girl in your prayers! We need her to turn this around and start feeling better soon!! Where is our smiley girl?!?!
(And YES, I am still going to do a stroller review! I have been working on a post but just haven't had much time to finish it lately (between Reagan's bad days and Ryan's sleep training)! I will definitely finish it by next week...promise!)

Super nauseous

Reagan still feels lousy today. I'm not sure how much sleep she got last night, but she was in her chair and I know she slept off and on. She's still super nauseous today. Throwing up, gagging/retching, just plain yuck! I hate this! We're switching to pedialyte tonight. She had two therapies today, OT this morning which she did very well for, and then PT this afternoon, for which she was very nauseous. I'm hoping and praying she'll be over this by tomorrow. Thankfully our night nurse is here tonight, so I know she'll be in good hands! Another issue we've been dealing with today is the red patch above her bottom is back! We have no idea what this is. All I know is we've seen it over and over again and each time it is at the end of a bad cycle. I'm not sure if it's something as simple as a circulation issue (like her red ear) associated with the dysautonomia she experiences during a bad cycle or if it's something worse like a recurrent infection!?!? The only thing that makes me think it's not the dysautonomia is that the very first time she had it, her doctor suspected cellulitis and put her on clindamycin and the very next day, the redness was gone. I thought it was too soon to be the antibiotic, but every other time she's had this, it drags on for days and gets much worse before it gets better (and the fact that it gets worse makes me think it's something more than just a pressure sore from sitting in her chair so much during bad days). So we're going to try the clindamycin again (just a couple days) and see if it clears right up again. If so, sounds like we've got an infection on our hands. So in addition to all of Reagan's issues, today I have been trying to sleep train Ryan. I've been putting him in his crib for naps and standing beside him as he cries incessantly and let me tell you, I'm just about as traumatized as he is! The first time it took and hour and 20min before he finally fell asleep (and slept 40min)...the second it took closer to 40min (and slept 1.5hrs)...of course he's not crying the entire time...but most of it! His hair gets so wet with sweat, it looks like he just got out of the bath! I'm hoping to get him transitioned from his swing (for naps) and our bed (at night) into his crib (all the time)! We'll see how it goes. Very stressful. Tonight it took over an hour of full on screaming crying! This is going to be tough.

No smiles, but nice to see her back in the saddle again!

Monday, October 22, 2012

Another rough one

It's been another rough day for my girl. She didn't make it more than an hour in her bed last night. We transferred her back to her chair and she did go back to sleep, but she was restless. She was still very agitated this morning, not wanting to be messed with. Her speech therapist came and tried to interact with her a little, but Reagan wanted nothing to do with it. Then this afternoon she got very nauseous and had a HUGE throw up and lots of gagging/retching but she wasn't as agitated (just miserable). She was a little zoned out right after the throw up (which worried me a little), but she recovered and then her OT came and she spent some time on the swing doing brushing and joint compressions and Reagan actually seemed to enjoy that a little. She was still very nauseous but we were thinking maybe she was turning a corner. She made eye contact with us for the first time in days and really seemed to be more present (and we were able to take her arm restraint off for the first time in days). Then tonight, the fussiness took over again and she got very agitated and was flailing and biting so we had to put her arm restraint back on. She's already rubbed one side of her face/nose raw with the arm restraint. I'll be glad when this bad streak is over. The odd thing is...she can either be fussy or nauseous...she can't do them both simultaneously. So the only good part about her fussing is that she's not as nauseous as she was before. She was dozing off, but now she's got a second (crazy) I'm not sure what that means for sleep tonight! Please continue to keep her in your prayers...she really needs some good days!!!

Sunday, October 21, 2012

Leave me alone!

Reagan slept surprisingly well last night. Of course, it was in her chair, but we'll take what we can get! She's actually spent most of the day today in her chair. She doesn't want to be held or even talked to, she doesn't want her hair fixed, and most certainly doesn't want her diaper changed...she just wants to be left alone. We're not sure if it physically hurts her to be touched on days like this...we don't know if she's having body pain or head pain or both...we just know she's miserable! She hasn't been nearly as fussy long as you leave her alone. She's still pretty bitey though, so we've kept her arm restraint on all day again. The most encouraging thing is that tonight she actually dozed off on her own and Mike was able to transfer her to her bed. Laying in bed has got to feel good after sitting in that chair for so long. Please keep it in your prayers that she is feeling better by tomorrow! These days are so hard on our girl!!

Saturday, October 20, 2012


Well, we only made it 7 days! Reagan had 7 good days and now we are back to misery. She slept all night last night only to wake up this morning and start crying the second I picked her up! It's been a horrible day for my girl. Lots of crying this morning, but this afternoon and night it's been more moaning/yelling than actual crying. We've tried every medication and nothing works more than 30min or so. We've tried holding her, laying her on the floor, putting her in her chair...tonight she's been more quiet than she's been all day just sitting in her chair. But don't talk to her, or God forbid, try to change her diaper...she goes ballistic. Please keep our girl in your prayers. We've seen this coming for days...but we were hoping maybe she'd skip the bad streak this go round. No such luck. I'm just hoping and praying she'll get some sleep tonight and wake up feeling better tomorrow!

Friday, October 19, 2012

Good day for therapy

Reagan slept off and on again last night. The night nurse was here and she said she was very restless (even during sleep). She woke smiley again this morning...she's smiley, but serious at times. This morning she had both PT and OT and both therapists said she did GREAT for both. Then right around the same time it happened yesterday morning, Reagan broke out into tears for no apparent reason. Grandma came to the rescue though and after a few cuddles from Grandma, she was back to normal. We put her in the stroller and took her down to the garage sale (the one my neighbor was having benefiting the UMDF and my mom was helping with). She got lots of love from our neighbors...especially Uncle Johnny (who just can't say enough about how much he loves Reagan). I had Ryan in the baby carrier and he got his share of attention as well (all I got was a backache)! I'm moving a little slower today after stubbing my toe on Ryan's walker that was in the middle of the kitchen floor! Today it's a nice purple hue and quite painful to walk on. Oh well. Just a toe. This afternoon Reagan had vision therapy and speech (through the school system)...both make ups from earlier in the week. She, again, did great for both. This afternoon and tonight she was on the verge of tears when Ryan started his jib jabbering, but she settled down and held it together. Right now she's dozing off on Mike's lap...such a sweet girl. She's really fighting to continue to have good days...please keep it in your prayers that the good days continue for our princess!

Thursday, October 18, 2012

Smiles and tears

Reagan was up and down last night. Our night nurse was here, so she was able to get her back to sleep and this morning I found her asleep in her therapy room. She woke happy and smiley and was super excited to see her Grandma was here when she woke up!! She's been a good girl today. Very smiley, a little less vocal, but still a little on edge. This morning she had speech and she ate some food. I sat in and was watching her (she was sitting in her orange childrite seat which doesn't have any head support), and she was doing really well holding her head up and eating...but twice she suddenly dropped her head backwards (like she couldn't hold it up at all). That concerned me a little (makes me worry about the s word). We moved her to her special tomato seat and her therapist thought she saw her do something funny with her jaw, but when we watched her closely, we never saw anything. After that she was just hanging out with the nurse, waiting for her teacher to come, when Daddy came home for lunch and came in to say hi to her. She got the frowny lip and then broke out into tears. I picked her up to console her and as I was holding her, she had a huge wet & dirty diaper that proceeded to leak all over both of us!! Three of us cleaned her up (while Mike held Ryan) and then afterwards, she seemed to feel better! Her teacher came and worked with her and she was fine the whole time. Then she had PT and endured lots of stretching and even an hour in the stander! Tonight Mike was holding her and she broke into tears again...we still don't know what happened to make her cry like that. She got over it though and was fine. A little on edge, but fine. Tonight she dozed off around 10:45pm (before her clonidine)...hopefully she gets a more restful night of sleep tonight! Please keep it in your prayers that she continues to fight off the bad days! Come on can do it!!

(I can't figure out for the life of me how to turn these around!)

Wednesday, October 17, 2012

Sweet girl

Reagan slept well last night (I think). I don't remember hearing her much until this morning. She started "talking" around 5-6 and continued until I picked her up at 7. She's been pretty vocal all day. Most of the time it's squeals or yells and it sounds like it could go either way...thankfully she's kept it in check and we've made it through the day without any real outbursts. There were times where she'd mimic her brother (who has been exceptionally vocal the last couple days) and she sounded happy, and there were times where her brother's jib jabbering seemed to irritate her and she'd sound like she was about to lose it! All the while, she's kept a smile on her that's a good thing. She only had one therapy today...speech. I walked in toward the end of her session and she was going to town with a blue lollipop!! Such a sweet girl!!

Tuesday, October 16, 2012

On edge

Last night was a restless one for us all. Reagan slept most of the night, but she tossed and turned a lot and woke up every so often. Ryan who ended up in bed with us way too soon, did the same, keeping me up most of the night! Reagan woke up this morning smiley, but she's been a little bit on edge today. Lots of vocalizations again...but today she was more tense. This morning she had OT and she tolerated it well but then this afternoon (right before we were supposed to leave for her Physical Medicine and Rehabilitation appt) she started freaking out a bit. I gave her a half a clonidine and then she fell asleep in the car and slept the whole way there, the entire appt, and the whole ride back! Not a lot to report from the appt. Basically our only option of getting Reagan's feet flat again is to do surgery...her ankles are now officially contractures and there's not much we can do about it (her feet are always pointed like a ballerina). Botox never really worked for her and casting didn't do enough to warrant that sort of torture. We're not going to do surgery at this point, we're just going to try to prevent them from getting any worse and continue to work on standing with a wedged AFO (and possibly try a stretching splint). We also talked a lot about the stroller situation and she seems to be a fan of the Maclaren. I'm still on the fence but I'm leaning that direction as well. Reagan didn't wake up until we got back home and took her into the house! She's continued to be on edge all night but as long as I keep her whiny brother out of the room, she's been OK. Hopefully she gets some sleep tonight and wakes up OK. Days like this always make us worry about tomorrow. Grandma is coming in on Thursday (to help our neighbor with her biannual garage sale benefiting the UMDF), so she's going to be really upset if Reagan is miserable the whole time she is here! Prayers for my girl are appreciated!!

Monday, October 15, 2012


Reagan slept well last night, in fact, she continued sleeping all morning! She didn't wake up til 10:40am! She woke happy though, so that's good! She's been in a good mood again today. Very vocal...sometimes a little too vocal (we were worried she might be going over the edge)...but she kept it happy and had a good day. She had speech and OT today and both went well. She ate for the first time in a while during speech and she gobbled up the "Hawaiian dessert" baby food (I tried bananas/strawberries yesterday and she wasn't a fan). Tonight she was a little annoyed when her brother started crying for some unknown reason, but shortly thereafter she feel asleep, so maybe she was just tired. She's been very restless...tossing and turning all over her bed...I sure hope she's able to sleep tonight. And I'm hoping she'll continue with the good days...she could really use a nice long break from those bad days! In other news, Ryan slept the WHOLE night last night! He slept from 9:45am-7am!!! A new record! Maybe letting him tire himself out, isn't such a bad idea after all (of course, eventually we need him sleeping in his CRIB!!) Tonight I didn't let him cry and he's been very restless. Praying for sleep for everyone!! (and more good days..).

Sunday, October 14, 2012

Another good one

Our girl has had another good day today. She slept well last night, then both she and her brother woke up bright and early this morning! She's been smiley and sweet. Her hands and feet are still cold and clammy and her back is still overheating (and she's had the one red ear)...but no dirty diapers today and her rash (or whatever it is) looks like it is finally getting a little better! This afternoon she was a little tense and she was getting a little over excited by her brother's fussing, but she was OK and never got too upset. All in all, it's been a good day for my darling girl. I hope we have many more! Ryan was resisting sleep again tonight so we let him cry it out for 20min and no such luck in him settling down. He wore himself out though and I was able to pick him up and get him to sleep quickly. I have ordered a book that was suggested, so hopefully we'll find a method that eventually works! Meanwhile, I'm still working on a post for the stroller comparison...stay tuned!

Saturday, October 13, 2012

She's Back!!!

Reagan slept well again last night and woke up happy this morning!!! She's pretty much back to her normal self (with the exception of the redness on her bottom). She's smiling and even given us some laughs! She's been calm, cuddly, and sweet all day!!! I'm LOVING it! It's so good to see our girl again. I'm hoping for many (many) more days like this! We finally got the other stroller in yesterday and she took a test drive in both of them today (the special tomato EIO pushchair and the maclaren major). I'm pretty sure we know which one we're going to keep (and it's looking like the more expensive one). I'm working on something that I'll post in the next couple days reviewing both of them...and any of our local special needs friends looking to up grade your umbrella stroller and want to come over and check them out, just email me or let me know through the blog!! It's a good thing Reagan has been so good today, because her brother was really giving us a run for our money! He's throwing temper tantrums and resisting naps...please tell me this is just teething!!! Finally, after trying and trying to get him down for a nap today, Mike took him from me and put him in his crib to cry it out! I was this close to going and picking him up multiple times but he would quiet down for a second (so I'd resist) and then he'd start back up again! It took 20min, but finally he fell asleep in his crib. He only slept 30min though and then woke crying and all red in the face, so I'm not sure how much it was worth it in the end. This one is definitely going to be a challenge!! What happened to us getting an easy child this go round?!?!?

Friday, October 12, 2012

Baby steps

Reagan slept well last night. She's been a little more mellow today. Still off, temperature regulation is still off and she's still tense and a little zoned out, but better than the day before. Baby steps. She had multiple therapies today (PT, OT, & vision/OT) and she did surprisingly well with all of them...considering how miserable she was just a couple days ago. She has that weird red patch on her bottom again. It comes and goes. The first time we saw it, her pediatrician thought she had cellulitis and put her on major antibiotics and it went away very quickly (but then she had a horrible case of diarrhea that is still somewhat unresolved). Then it came back again a week or so after getting off the antibiotic and this time her doctor just thought it was a diaper rash (even though it looked pretty similar to me). That time (without antibiotics), it took much longer to go away. It actually got much worse and spread before it got better (we initially were using aquaphor on it, which wasn't helping at all, then we started air drying her and using mupirocin antibiotic ointment and eventually it went away). I'm beginning to wonder if this has something to do with her bad days. I don't know, I think I'm going to have to go back through the blog and see if I can find some sort of pattern. Anyway, please keep it in your prayers that it resolves quickly and doesn't cause any more discomfort for our girl! Today we finally got the other stroller we ordered, so keep an eye out for my review of both of them in the next couple of days (when Reagan is feeling well enough to try them out)! Ryan was a real pain again today (God I hope he's just teething and not just turning into a rotten child)! Tonight he was resisting sleep and I had to let him cry it out again. This time he cried nonstop for 15min...which was the longest I was going to let him cry (the last time I picked him up after 10). But at exactly 15 min he settled down and was quiet, so I peeked in on him (expecting him to be asleep) and there he was wide eyed, covered in sweat! Poor thing. I picked him up and eventually got him to sleep, but this time he was still fighting to stay awake. Hopefully he sleeps well tonight...we all could use some sleep!

Thursday, October 11, 2012

Headed in the right direction

Reagan slept surprisingly well last night...and so did her brother. We here having a horrible time trying to get Ryan to sleep last night. I tried nursing him, Mike tried rocking him (which worked til he hit his head on the mobile trying to lay him down), I put him in the car and took him to the pharmacy with me (which usually does the trick but he just cried and cried)...I even tried 10min or so of letting him cry it out...nothing was working! But then I picked him back up, calmed him down, and was able to get him to sleep around 9:40-10pm and he slept til 5:15am!!! That's by far the longest stretch he's EVER slept!! EVER! Of course, he was still in his swing, but whatever. Actually, Reagan was asleep in her chair and Ryan was asleep in his room, and I woke up at 3:15am thinking I could hear Ryan crying and glanced over at the monitor, only to see it was DEAD!!! Who knows when it died (sometime between 11:30-3:15), but I jumped out of bed horrified that one or both of my children had been crying without me knowing, only to find them both fast asleep!!! (not sure what I had heard) Anyway, thank you God for a good night's sleep, because this morning our fill in nurse was a no show! Yep! They couldn't even get in touch with her to figure out why she didn't show!! I tell you what, I'm so SICK of these nurses! I mean, it's not just the's the people they hire! What kind of person just doesn't show up when they are a nurse and supposed to be taking care of a disabled, medically fragile child?!?! Makes me sick. Thankfully, this happened today and not yesterday. Reagan has been a lot more stable today. Still does not want to be messed with and cries and bites when you try to change her diaper, but if you just let her be, she's pretty calm. Her teacher came and read to her for an hour this afternoon and she did fine. I wasn't sure how she'd do with that, but the teacher just kept it calm and quiet (and didn't touch her), and she was good, even looking a little sleepy! Then her PT came and I was even more nervous about how she was going to react to that, but she swung with her on her swing and she seemed to enjoy it! She was very relaxed (maybe she just doesn't like ME touching her)!! She was so relaxed that she had her second dirty diaper of the day (which is good because it has been a few days since she had one)...but also reinforcing my idea that these bad days seem to have something to do with her bowel movements/GI issues. On a good note, she really only had one horrible day (Tues night and Wed day)...she used to have 2-4 days of misery and crying. Tonight a friend brought us dinner and we hung out for a bit...definitely not something that would have been possible several months ago. She's still not back to herself (she had a HUGE throw up tonight and a smaller one this morning, her hands and feet are still super clammy, and there's no smile in sight), but she's headed in the right direction...and for that we are very thankful!


Wednesday, October 10, 2012

Rough night, rough day

Reagan was up and down a lot last night. She would sleep for a bit in her brown chair and then wake up flailing and crying, her night nurse would pick her up and hold her and she'd calm back down (but you can only hold her for so long) and then she'd either put her back in her chair and she'd sleep for a bit longer, or she'd immediately start crying again! Not a good night. Of course, her day was pretty much the same, so not a good day either. Lortab didn't seem to help at all, clonidine would help for only about 30min-1hr...actually the only thing that seemed to yield immediate improvement was the ibuprofen. She pretty much cried and fussed all day long (especially when being messed with), that is, until the ibuprofen. It seemed to calm her down a take the edge off. She was still very tense, but you could go near her and even talk to her without her immediately freaking out. Of course, her brother resisting sleep and becoming completely irate tonight nearly upset her, but thankfully she settled down and fell asleep! Hopefully she sleeps tonight and wakes feeling better tomorrow! Last night was the only night our night nurse works this week, so no nurse tonight and a (new) fill in day nurse tomorrow...should be fun. Lots of prayers please!

Tuesday, October 9, 2012

Bad days begin

They're back. I was really hoping to avoid them, but they've crept back into our lives and my poor girl is paying the price! I'm of course, talking about the bad days. Reagan slept all night last night and then slept in this morning til around 11am. The fact that she was sleeping in, made me nervous in and of itself. I had a doctors appt this morning, so I reluctantly left Reagan at home (still asleep) with her nurse, and Ryan and I went to my appt. Thankfully, she woke up OK. She was actually OK all day long. No smiles, slightly easily agitated, but she was OK. She even had a great session with her new OT. As the afternoon went on, I could tell we were skating on thin ice. Then tonight at 7pm it hit her. She started crying and cried nonstop til 9:30pm or so (I gave her Lortab but it didn't do a thing). Watching her cry like that is just heartbreaking. It literally is torture as a parent to watch your child suffer and there is not a thing you can do to help them! When she finally calmed down, she was quiet in her chair, but still very stressed and easily upset...she didn't want you to even look at her! She had another meltdown when we changed her diaper, but fell asleep after I gave her clonidine. Thank God tonight is the night our night nurse is here! Please keep it in your prayers that she gets some sleep tonight and wakes without tears tomorrow!!! Praying for the shortest bad streak yet!

Monday, October 8, 2012

Could use some sleep

Reagan was up a lot last night. She was happy to just lay there kicking around, but she definitely wasn't sleeping. Despite not getting much sleep, she's been a good girl today. She's still a little on edge at times, but overall she's been good. She had vision/OT this morning, then speech, and then OT this lots of therapies and she did well with them all. Tonight she was starting to get a little agitated (of course her fussing brother wasn't helping matters), but then she did Facetime with Grandma and the smile came out and her eyes lit up! Such a sweetie. A little while later, she dozed off on Daddy and I thought maybe she was down for the night, but now she's back awake and kicking. Hopefully we'll be able to get her to sleep some tonight...our sweet girl could use some rest!

Sunday, October 7, 2012

Still on edge

Today has been another good, but slightly on edge, day for my girl. She slept fairly well last night...she woke up around 4am and was "talking", but Daddy was able to get her back to sleep. She woke back up again (I can't remember when) and just laid in bed making noises until I went in and picked her up around 7:30am. She's been awake and alert all day today. Still very vocal, still on edge at times (lots of leg kicking). She didn't want to lay down today (started getting vocal in a bad way), so she alternated between her brown chair, her wheelchair, and our laps all day. I'm glad that she's hanging in there and not having actual "bad" days, but I don't feel like these days are legitimate "good" days either. She's tense and on edge, we're tense and on edge...where's our happy, smiley 100% good days?!?! I feel like we haven't seen any of those in a while. Please continue to keep our sweet girl in your prayers!

Saturday, October 6, 2012

Walking on eggshells

Reagan slept well last night and woke up this morning smiling. She's been similar to yesterday...very vocal and definitely on edge. She and her brother have been feeding off each other. It's kind of cute, in that he'll squeal, then she'll squeal...but we all know, that can easily go the other way (and it's not so cute when I'm trying to get Ryan to sleep and she squeals right in his ear)! Thankfully, she's held it together and managed to pull through and have another OK day. I feel like we've been walking on eggshells all day, but I'm just glad she's still OK. We have no clue what tomorrow will bring, but it sure would be nice if she'd turn this around and just give us some actual good days again!! Prayers for my princess are certainly appreciated!

Friday, October 5, 2012

Hint of crazy

Reagan slept all night last night and woke up a very happy and talkative girl this morning at 7am! She's been good today, but there are hints of craziness (which makes us worry about the possibility of impending bad days). She only had one therapy today, but she managed to fall asleep 10min before the therapist got here and then slept for an hour and a half (the only nap she took all day). Her hands and feet are finally back to normal, but she's had the bright red right ear all afternoon today. Daddy jiggled another tooth out tonight (her right lower lateral incisor)...that's baby tooth number 4 (all bottom)! Her two front top teeth have been loose for a loooong time...those are definitely the next to go! This afternoon and even more so tonight, Reagan has been super vocal but not necessarily in a good way. She sounds like she's on the edge and that makes me very nervous. She was having a lot of gas this afternoon, so tonight I "helped" her to go to the bathroom (hoping maybe that would relieve some of her irritation)...but it didn't seem to help. It seems way too soon for another bad streak, considering her last was just a week ago, but we never know what to expect around here. Please keep her in your prayers...she could sure use some more good days!!!

Thursday, October 4, 2012

So sleepy

Reagan slept surprisingly well last night. If you remember, before falling asleep last night, she was quite the kicking ball of energy! She finally dozed off with the help of clonidine and then slept through til around 6am, when the night nurse found her moving around in her bed. She fell back asleep and then slept til just before 8am. Her nurse picked her up and took her in her therapy room, only to have her fall asleep while she was changing her diaper! She was OUT! She would move around occasionally throughout the day, stretching and sometimes even opening her eyes and smiling, but she was out of it for the most part. She actually didn't budge until her physical therapist came this afternoon and started stretching her! She woke smiley and spunky and was very vocal and quite alert for a couple of hours. She started nodding off again and then she was OUT. As of now, she's still asleep. She keeps moving and stretching, but she's asleep. Hopefully she sleeps through the night again and is back to herself by tomorrow. In other news, yesterday we also got our pictures in the mail from the Austin walkathon. There was a photographer there taking pictures of the teams and you could buy the pics for a donation...which is actually a good idea (we should be doing that in Houston). My only complaint is the pictures are pretty dark, you would think a photographer could have lightened them up a bit (and cropped the misc stroller out of the far left of the pic)! I understand these are donated services, but come on! They turned out pretty cute nonetheless! (Keep in mind, I was taking a picture of a picture...they're not really that fuzzy!) 

Wednesday, October 3, 2012

Picture of Hope

Reagan slept fairly well last night. I do know that she was awake around 4am and Daddy was able to get her to go back to sleep for a bit, but not long. She's been in a good mood all day today. Still a little easily excited (certain noisy toys can set her off into crazy laughing), but overall still good. She's had a busy day of therapy today. First private therapy speech, then speech through the school system, and then "school"! Busy day! Her chorea has been a little out of control today. Those legs are kicking, kicking, kicking nonstop (and the hands and in the mouth nonstop)! This afternoon we took her outside on her swing and we had to really spray her down with skin so soft (and she had the off clip on and the off coil going)! She's got 3 huge mosquito bites on her right arm. Grandma took her for a 15 min walk two days ago and now she's paying for it! They are all red and hot...poor thing! I bet she just wants to scratch them!!! I'm keeping steroid cream on them so hopefully it helps. Grandma swears by windex, so tonight I put some on them and they actually seemed better (less red) almost immediately. This afternoon we got a delivery...our Picture of Hope (from Reagan's Tiny Sparrow Foundation photoshoot). I can't say enough about this organization! They have been professional and so easy to work with...and they did a BEAUTIFUL job! From the photographer they placed us with, to the slide show of the photos that was impeccably done to heart wrenching music, to the delivery of the gorgeous photo album and CD...everything has been perfect! This is something we will cherish forever! Such a great organization!! Please check them out! Prayers that my girl can settle down and get some sleep tonight!!