Friday, September 30, 2011

Road trip

Reagan has been a precious girl today! She slept like a rock all night and then woke up this morning all smiles!! She's been pretty mellow all day, but we have heard a little "talking" from her throughout the day as well. This afternoon (as soon as Mike got off work), we left for Dallas (just in time to hit 5 o'clock traffic in Houston). It took us right at 5 hrs to get there...but some of that was because of all the traffic. Reagan was asleep when we picked her up to put her in the car to leave, but she woke as soon as we strapped her in to her carseat and stayed awake most of the drive there. She slept maybe the last hour in the car but woke up as soon as we got to the hotel! She better sleep tonight!!! The reason for this trip is that Reagan is getting a special needs tricycle from the Mequite AMBUCS chapter. They are having a gifting ceremony tomorrow morning, where they'll give several kids their tricycles and fit them to make sure everything works for the child. Certainly not the optimal time for a road trip (since we haven't even been home a week from our Bahamas trip), but we didn't really have a choice on the date! I'm just so happy that everything worked out and we should have a happy girl tomorrow ready to ride her tricycle!!! Grandma is going to meet us up there, so Reagan should be happy about that too! I promise to take lots of pictures!

Thursday, September 29, 2011

Pump problems and a sleepy girl

Last night was a nightmare!! But little Miss Reagan had nothing to do with it...well, not with the big problems! Reagan was still not liking her mommy last night. She fell asleep for a little bit, but woke back up very nauseous. Thankfully, she fell back to sleep after a dose of clonidine. I watched the nurse last night as she made up Reagan's formula, she put it in a bag, and then I hooked Reagan up at about 11:20pm. Ten minutes or so later, it started beeping "No Food". Obviously there was food (we just put a new bag on)...but we know this alarm all too well. It's a false alarm. Nothing is wrong with the pump. Nothing is wrong with anything. It just refuses to work for some reason. I messed with it a few times and then finally just poured all the formula into a new bag (usually that will do the trick). Five minutes later, it went off again "No Food". I changed the bag out again! Immediately it said "No Food" and refused to work. By then it was midnight, so I called the home health company (waited on hold forever...with ridiculously LOUD grating music blaring in my ear) and they put in a call to the driver on call. An hour later we still hadn't heard from anyone, so I called back. They couldn't get in touch with the driver. They said they'd continue trying. An hour later, still nothing, so I called again. Finally this time they put me through to the lady we normally deal with at the company (I guess they called her when they couldn't reach the guy on call). She said that they had been trying to reach this guy for the last few hours and he just wasn't answering. If she couldn't get a hold of him in the next 30min, she would do it herself (and that's what she did). Finally around 5:30am she shows up with another pump. The nurse hooked Reagan up and it seemed to be working. The lady left and 10 minutes later it started alarming again "No Food"!!!! She called them back and they told her to check the sensor on the pump. Well apparently the pump she brought us had a big crack right over the sensor (this isn't her usual job)! So it was now after 6am so she called another delivery guy who then got up and headed over to the office. He picked up another pump (and more bags) and got to our house at about 7:45am. FINALLY it worked. I don't know if it was the new pump or the new bags, but it worked! All of this time Reagan was completely unhooked. No food since 9:30pm or so! And all of this time, with multiple alarms going off, our precious little girl stayed fast asleep! Amazing! She actually slept in til about 10:30am when she woke with smiles. She's been very quiet but super sweet all day (even for her mommy)! She had "school" at noon, which she really seemed to enjoy, and then PT at 2pm. Afterward she had an appt with the PM&R doctor (physical medicine and rehabilitation) that suggested putting her on the daily dose of clonidine to help with her "bad" cycles (which really seems to be helping...knock on wood). It was basically just a quick follow up, she wrote us another prescription, and we were on our way. Reagan fell asleep on in the car on the way to the doctor's office and slept through the appt and then continued to sleep once we got home! She's a sleepy girl!! Hopefully she sleeps tonight because I'm exhausted after the night we had last night!!! Please keep her in your prayers for continued good days! Tomorrow night we drive to Dallas (5hrs away) so we can be there at 9am Saturday morning to go to an event to get Reagan's special needs tricycle (more on that tomorrow)!!! Prayers for a safe drive and happy Reagan are appreciated!!


Out cold!!




Still sleeping...

Wednesday, September 28, 2011

Lots of tears

Reagan has been quite the handful today. She woke up several times last night...each time crying out like something was hurting her...but with some patting and shushing eventually she went back to sleep. This morning, however, was a different story! She woke screaming, crying and she screamed and cried for quite sometime. It sounded like she was in pain...like something was hurting her. She eventually calmed down for her nurse and has just been on edge all day ever since. Always on the verge of tears...even when she's not crying she's got tears streaming down her face...she'll sound like she wants to laugh but somehow ends up in tears. Her eyes are all red and puff, she looks absolutely pathetic. One trigger we found was talking amongst ourselves. A couple times when the nurse and I were talking about something, she'd start up with the crying. At first I thought she just didn't want us talking, that it was a matter of being overstimulated (because she sometimes does this), and many times, it was. But throughout the day she's had several meltdowns and most of them can be related back to me! I think today is a "I hate Mommy" day!!! I can't talk to her without her getting a big lip and breaking out into tears. I can't do anything without her immediately frowning and crying! This is much more mild than the typical "bad" day (she's not crying nonstop, she's not trying to injure herself, she isn't having chorea, and her hands and feet are normal temps now), but at the same time, it's much worse than she's been in weeks! I'm used to her giving Mike a hard time, but it's a little more difficult when it's me!!! Since I have to do most everything that needs to be done for her, I have no choice but interacting with her all day long. Well, she wants NONE of that today! None! I'm not really sure what's going on with her, but hopefully she gets over this and is back to loving her mommy tomorrow. I guess one good thing is the night nurse comes again tonight. That means I won't have to sit up all night with a child that hates me and cries when she hears my voice and even more when I try to hold her!! Prayers for a good girl tomorrow, please!!!!

Tuesday, September 27, 2011

Fighting off bad days

Last night we had a night nurse again. From what I was told, Reagan woke up a couple times and made noises and moved around but then fell back to sleep each time 5-10min later. I woke up this morning to the alarm on her pulse ox (which she doesn't really need but the night nurse insists on her wearing). Her sats dropped down to 94-95 for a minute or so and set the alarm off, which is ridiculously loud, so I'm surprised it didn't wake her up! She was actually still asleep at 9:15am (and we had to leave for her neurology appt at 9:45am), so we started dressing her and that's when she finally woke up. She was very quiet and solemn. No smiles or laughs this morning. She was still a little sleepy and dozed off for a little while during her neuro appt. Her current weight is still 38lbs (she hasn't gained any although she feels heavier) and she's 106cm (41.7 inches). We're pretty sure she's gotten taller. We put her in her umbrella stroller today and her feet are hanging so low, they almost touch the ground!!! Today's appt was with the neurologist we switched over to when her previous neuro moved back to the North East. This was our first time to meet her. She's very tiny and meek. Not much personality, but then again, not many neurologists have much of a personality. She asked me to recount Reagan's seizure history from the beginning since she's an epileptologist (oh great...for the 200th time). It's actually been almost a year since Reagan's last EEG (I can't believe it's been that long), so she's going to order a 24-48hr portable EEG to be done in the home (hooray...no hospital)! She also ordered some blood work, because two months ago when her previous neuro checked Reagan's Banzel levels they were pretty low (12)...so we may need to increase that again (just to prevent any breakthrough seizures). So, the jury is still out as to whether or not I like this neurologist. I like the fact that she's still in contact with Reagan's previous neurologist, but she is pretty young and less experienced. I like the fact that she's at the same hospital, but I also don't like that because of all of the red tape surrounding this hospital and never being able to get a hold of your doctor when you need them. So we'll see. For now, we'll stay put. When we got home from the doctor's appt, Reagan had PT and the DME rep also came by to finalize the details on her wheelchair (the most important thing...we decided to go with a shimmery purple instead of the dull pastel pink...why don't they offer it in fushia?!?!). Then she had "school" at 3pm. She did let out a fuss/yell a couple times, but I think she was just being overstimulated, so her teacher laid off and she was fine. We noticed on our trip in the Bahamas, there were a few times when she got overstimulated (by music or too many people talking at once) and she'd fuss or yell out to let us know. She's definitely still fighting off the bad days. She's had a low grade temp (99) in both ears today and she's been a little spitty/gurgly and had a huge throw up (that came out her nose...some of it was yellow bile) while we were waiting for her doctor's appt this morning. She's given us a few laughs today but each time they sound pretty pathetic and like they could end in a cry. Overall, she's been hanging in there, her mood has been pretty mellow and her hands and feet are going back and forth from cold/clammy to normal. Hopefully she pulls through and avoids the bad cycle altogether again! Fight it girl! You can do it!!!

Monday, September 26, 2011

Scattered

This post is going to be a bit scattered. I have several things I want to talk about. The first is, of course, Reagan. She slept well last night and has been a good girl all day today. She's a little laid back today, not smiley but we have gotten some laughs, still spitty (and slightly gaggy)...but overall she's fine. I think she's still fighting off those bad days...but as of now, she's winning! It's pretty miraculous, when you think about it, that she had a good week the entire week before we left for vacation and then hung on for us and had a great week in the Bahamas (with only one big meltdown) and now she's still having a reasonably good week! Amazing! Prayer works. Another thing I wanted to mention in this post is how we handled the airplane ride with Reagan (to answer a question from yesterdays blog). In the past we've used her car seat on the plane. It was a hassle, SO heavy, and it took up so much space...her long little legs just weren't fitting anymore (her knees would touch the seat in front of her). So this time around we checked her car seat and we carried on her brown special tomato soft touch sitter (minus the wooden wheeled base)...our favorite chair for Reagan (we use this thing all of the time). This seat is not FAA approved, but we needed it in order to keep her upright and keep her from slipping down the seat (it has a big pommel between the legs)...it doesn't go past the bottom of the airline seat (so it doesn't take up any extra room and we were able to lean the chair slightly, so she was leaning back ever so slightly). Then we used something called CARES, a harness that is FAA approved, and we just strapped it over the top of her special tomato seat (around the back of the airline seat) and we used that as her harness (instead of the harness already attached to the seat). We did get asked if this contraption was FAA approved on two out of four flights, but each time we just explained that she couldn't sit without the seat and that we were using the CARES restraint that is approved and that seemed to satisfy them. We also brought along the hensinger collar for her just in case we needed it to keep her head up, but we were able to get by without using it (this could be used with kids with little to no head control). So that's how we did it. It was nice having the special tomato seat along with us and although it would have been nice to have the base (there's no way to fold it down), we were still able to use it in the house propped up on the sofa. For transporting the seat, I bought a light weight, collapsible pull cart so we could pull it through the airport. The last thing I wanted to mention is a wonderful cause that my good friend Heather has taken on. She and several other wonderful people have taken something that was a horrible incident (what appears to be a scam... special needs kids being promised iPads and then never getting them) and began their own mission (Mission iPossible) making sure that each and every one of these kiddos gets the iPads they were promised. They have already gotten 18 out of 20 kids iPads. They only have two to go! Your donation is tax deductible and completely legit. Please help them in this heroic mission!

Sunday, September 25, 2011

Bye bye, Bahamas

To our surprise, Miss Reagan slept the whole night through last night! She fell asleep in our bed (after her nasty tantrum) and we were so afraid of disturbing her, so we slept in the living room on the sofa!!! We had her monitor on and she moved around but she never made a peep. She woke up this morning without any smiles, but content nonetheless. It was another rainy day in the Bahamas. I guess we were lucky that we didn't have any of these days until the last two days we were here, although it would have been nice to have some sunshine and get some last minute pictures before leaving!!! It was overcast and rainy though...so no pictures! We left the house around 10:20am with our minivan packed to the tippy top. We got to the airport with plenty of time to kill and were pleasantly surprised by the new wing of the airport full of shops and restaurants (the old wing that we were in on arrival was under construction and very old and dingy). Another nice surprise was that we weren't charged an oversize bag fee this time around (which is good because we've traveled with this bag a thousand times and it's NOT oversized). It was a challenge dragging all of our carry-on luggage through the airport but we made it. Everything went smoothly and Reagan was as good as gold the entire time. No smiles, cold clammy hands and feet, very spitty, but no fussing...so who can complain?!?! She did have a liquidy dirty diaper right when our plane landed in Atlanta but we were able to get that changed before we had to board our flight to Houston. Our flight came in around 6pm, it took us a while to get all of our luggage and poor Mike really had to work to wrangle all of our things. Now we are home and we're so happy about getting to sleep in our own bed tonight! Reagan fell asleep early at 9pm (although that's 10pm Bahamas time), but she has been a little restless. Hopefully she's able to sleep tonight because we are all beyond exhausted!!! She's really fighting her hardest to avoid going into a bad streak...please continue to keep her in your prayers!!



Saturday, September 24, 2011

One day too much?

I'm afraid that we may have pushed our luck a little. In planning this trip, we decided that we would stay 8 nights instead of the typical 7. Well, this extra day has turned out to be not such a great day. Last night before Reagan fell asleep she started getting a little crazy. She was thrashing around, biting at her hands, yelling out...she was a mess. She did finally fall asleep after a dose of clonidine. But during the night, she was up a lot again. She wasn't crazy anymore but she was more restless and on edge than the previous night (and still making lots of noises). I'm not sure how much real sleep she got. Mike got her back to sleep for a while, but I don't think that lasted more than 1-2 hrs. Needless to say, it was another long night. We also had a huge rainstorm last night and it rained most of the day today...so we couldn't really go out and do anything. Then my sister had a crisis at work and had to get back today (instead of tomorrow), so we spent all morning trying to find a way to get her on a flight back. She couldn't get a flight out on the same airline, so my poor mom had to buy her (and her boyfriend) new tickets!! What a mess. Then tonight we decided we would try to go out to dinner. We haven't had a decent Bahamian meal since we've been here and we found this place (in a travel guide) that sounded perfect. Reagan had been good all day, a little quiet, but good. She was a little nauseous, she ha thrown up once but she seemed OK. So we headed out to this place. We didn't know exactly where it was (and it was clear on the other side of the island) so we drove around for a while trying to find it. The entrance to the place wasn't well lit (making it even harder to find), the parking lot was packed (although it was really just a gravel/dirt pit), and it was pouring rain...we decided just to blow it off and go to a different place. As we were driving around trying to find parking for the other place, Reagan started up. She started off just a little crazy, then the next thing we knew, she was full blown crying! We immediately decided to just go home (after driving around for almost 2hrs) and Reagan cried the whole way home! Once we got back, Mike laid down with her and she fell asleep fairly quickly. I'm hoping maybe she was just tired, but I know all too well that cry and I'm afraid we might be in for a rough trip back home tomorrow. Please keep her and all of us in your prayers as we've got a long day ahead of us!!

Friday, September 23, 2011

Quiet water, talkative Reagan

Last night Reagan was awake all night long "talking". She ruined any chance that Mike and I had at getting a good night's sleep and today we are both really dragging. Reagan, on the other hand, is still going strong. She's definitely wired right now. Tonight her hands and feet are also feeling a little cool and clammy. I'm not sure what that means, but as of today she's still a happy girl. It's been a very cloudy day in the Bahamas. The sun really hasn't been out all day but the water has been very calm and glassy. This morning the tide was really low and we could walk way out into the water behind our house without it ever going past our knees. It was super clear too. Mike went snorkeling (much further out than he's ever been) and saw all kinds of interesting things. He saw lots of really big starfish and even chased around a small shark! This afternoon we went over the the straw market to check out the booths/shops. It started pouring on us and we had to run for cover where we sat for a good while just waiting for the rain to pass. It wasn't really stopping so once it let up a little we went around to a few of the indoor shops. Then we went and had lunch at a Greek restaurant. (Funny...we've had Chinese, Italian, and now Greek food since we've been here!) By the time we got home, everyone was pretty pooped. Everyone, but Miss Reagan. I'm just hoping and praying she goes to sleep tonight (or at the very least, allows us to get some sleep)! I'm running on fumes right now! Please keep her in your prayers for continued good days! We're here til Sunday...



Super calm and clear water today



Reagan looking calm...but that wasn't our girl today at all.


This picture is a more accurate depiction...moving, moving, moving...even as we wait for the rain to end!



The most rain we've seen since we've been here!

Thursday, September 22, 2011

Talkative girl

Reagan was a little restless last night. I think she slept, but it was more off and on. Mike heard her "talking" a few times through the night...so we know for sure she was up. She was a happy, talkative girl again today. Super vocal. My mom would sing to her and she would "sing" back! It was SO cute! We decided to go to the zoo today. The zoo here has flamingos and peacocks that roam around freely and you can just walk right up to them (and they start pecking at you and your things). It's definitely not the Houston Zoo, but it was a nice little detour from the normal beachy tourist activities. Reagan wasn't super interested in any one particular thing, but she did seem to like all of the noises (the parrots scattered through the park were pretty noisy and Reagan talked back to them more than a few times). We did get stuck in a little rain storm for a bit, so we just hung out in the flamingo pavilion with the peacocks (who apparently don't like to get wet either). After the zoo, we came home and went swimming. Reagan definitely likes the water. It sure would be nice to have a pool that she could swim in our own backyard!! Tonight Reagan's nurse watched her while Mike, my mom, and I all went out for dinner at this little Italian cafe where they had a live band. It was definitely the best food/atmosphere we've had in the Bahamas. It was also open mic night and the talent was unbelievable!!!! Everyone that got up to sing was amazing! One group of girls that came in just to buy desert, they ended up convincing some of them to sing and they were awesome! Turns out they were all in the Brooklyn Tabernacle choir!!!!! It was a really neat night. Great food, great singing, and Reagan was a good girl while were gone too! Of course the little turkey was still wide awake when we got home. She's been pretty wired. I'm not sure if she's going to sleep much tonight either. Continued prayers for a happy girl are greatly appreciated (she makes us nervous when she gets this hyperactive)!!!











Wednesday, September 21, 2011

Busy day at Atlantis

Reagan slept all night last night and finally decided to wake up today!!! She's been very active (must have been all that sleep she got) and super talkative today. We finally made it over to Atlantis today with her. We went through all of the aquarium exhibits and out of everything her favorite was still the blue glow in the dark jellyfish (just like at the Houston Zoo). With most of the fish she didn't really seem to care much but for the jellyfish those eyes opened wide and she was really looking at them. We were all really taken with the rays. They have some that are just HUGE! Lots of sharks...Mike even went down a slide that spit him out in a tube that goes through a shark exhibit! Reagan was a good sport the whole time. She did get a little hot at first (we didn't have her cooling vest on), but she really cooled down quickly after getting into the pool. Toward the end she did fall asleep and take a nap but we were all tired at that point. Speaking of tired...it's time for me to get some rest. Enjoy the pictures...



Grandma made this out of rocks from the beach this morning...


Atlantis
















Tuesday, September 20, 2011

Sleeping the day away

I guess we really wore Reagan out yesterday, because she has had quite the sleepy day today. We weren't really expecting a "catch up on sleep" day, since she never really went into a bad streak this go round, but today she's pretty much slept nonstop the whole day through! We didn't have any big plans today, so that was good. Reagan slept all night (even through her pump alarming multiple times) and then slept through til 3pm this afternoon. She was awake and happy for maybe 30min-1hr, just long enough for us to get her dressed thinking we'd be able to take her to Atlantis for a little while, and then she was back out (see picture below). We're hoping she'll be awake and happy tomorrow so we can take her to Atlantis to see all of the aquarium exhibits (which I think she'll love) and out into the water park.



Monday, September 19, 2011

Dolphin Encounter

Sleep last night was a little better for Miss Reagan. I'm pretty sure she slept all night and when I woke up at 7:20am, she was laying there awake but still groggy (I think she had just woke up). She's been a happy girl again today. Super smiley. Super sweet. So much so, we decided to seize the day and take her to do the Dolphin Encounter. We had to take a Ferry out to the island where they have the dolphins. It was a windy ride out there but the water was so amazingly beautiful. Reagan and I did the Dolphin Encounter, while Mike and Reagan's nurse Teri did the Dolphin Swim. I definitely think the swim would have been more fun, but Reagan was too young to do it and I was too pregnant!! The Dolphin Encounter was still fun...just not worth the ridiculous amount of money (none of it was, really). Reagan did seem to like the noise that the dolphin made, but she wasn't crazy about him splashing her with water!! It was difficult because I couldn't kneel on the platform like they wanted me to (and hold Reagan on my knee...I'm a little too short for that), so they had to bring a wheelchair in for us to sit on (which felt like it was going to float away at any moment). And when the dolphin would come by for us to pet, it was hard to get Reagan's arms stretched out enough to touch him. We did get a super cute picture out of it though, with the dolphin kissing Reagan on the cheek, so I guess it was worth it! It would have been nice to spend more time there, it was very deserted today and had a gorgeous beach with completely calm waters, but by the time we finished up with the dolphins and getting pictures/videos, we only had 30 min til we had to get on the last ferry of the day (I think they shut down early because there was no one there). We've talked about going back over there (just to use the beach and go snorkeling), but I just don't know if the weather (and Reagan) will cooperate or if we'll even have enough time for that. Tonight we went out to dinner and had Chinese food. It was the best and most reasonably priced food we've had since we got here. Reagan was a good girl and just sat there smiling the whole time (with her hand in her mouth, of course). She did let out a crazy laugh several times tonight...hopefully that was just a fluke and nothing becomes of it. I really want her to hang on and have at least a few more good days...we're planning on going to Atlantis tomorrow afternoon and all day Wed or Thurs. Please keep it in your prayers that our sweet girl continues to be sweet for at least the next couple days (but preferably til we get home)!!!












Sunday, September 18, 2011

Sunshiny Day

Reagan woke up last night crying. I don't know if she had a bad dream or just woke up in a foreign place and it freaked her out or what. I was able to calm her down fairly quickly and then I think maybe she fell back to sleep. I didn't sleep very soundly and I know sometime around 5-6am I woke up and saw Reagan moving around. I got up with her at 7:30 but I'm pretty sure she never went back to sleep. I'm not really sure how much sleep she ended up getting last night. She did give us a little scare this morning. She woke up fine but sometime around 11 or so she started getting fussy (and we noticed she did have cold & clammy hands and feet). She had a few outbursts of crying and then two dirty diapers. She seemed better after that and even took a nice little nap. When she woke up she was happy (and the sun was finally out), so immediately I covered her in sunscreen and put her bathing suit on so we could get her into the pool! She seemed to like it. Afterwards we took her down to the beach so she could get in the ocean (her first time ever). The water was a little choppy, so I'm not sure how much she enjoyed the waves, but she was a good sport. She's been great all afternoon and tonight we just hung out on the back porch and she was happy as a clam the whole time! More prayers answered!!!















Saturday, September 17, 2011

We're here!!!!

Reagan has been as good as gold today. No, seriously, prayer really does work because things could have turned out SO much different (especially considering how she was the last couple days)! She slept from 10:30pm-3:55am...she woke when we were changing her clothes before we left for the airport. Mike, Reagan, Reagan's nurse Teri, and I all made the trip in to the airport together. Reagan was a little dazed (half awake and half asleep) pretty much most of the morning. On the flight from Houston to Atlanta, she was tired and slept the whole trip (although she was pretty restless and kept popping back awake every couple minutes). But once we met up with Grandma and Aunt Amber, she was awake. Still pretty sedated (without any medication) and calm but awake with big eyes. Her eyes got even bigger when we got to the Bahamas and a man in a feather headress greated us playing the drums! Once in the Bahamas (it had been raining and was very hot and humid) we met up with my sister's boyfriend and we jumped in a shuttle to get rental cars (we almost left Reagan's carseat on the baggage carosel). We had to take two shuttles to the rental car place because we had so much luggage!!! My mom had reserved a mini van (my sister and her boyfriend had their own car but left before we did)...we never really thought about how we were going to get all of that junk to our house! We managed to squeeze everything in but Reagan had to ride on our laps instead of in her carseat! It was a trek getting from the airport to the house driving on the left side of the road and not really knowing where we were going...but we eventually found it. My mom rented a huge house that is right off the water. It has it's own infinity edge pool and it's own beach. Lots of entertaining space and lots of space in general. It could use some updating, but I don't know if you could beat this location (and it's nice not to have to deal with tourists and just sit back and enjoy the quiet)! We went and had dinner tonight (not that impressed with the food) and then went to the grocery store where we spent a small fortune on groceries (at least 4-5x US prices). We're all exhausted tonight...but Reagan has been great (not "happy" but we have gotten a few laughs out of her tonight) and for a traveling day, we could not have asked for more out of our girl! Now keep those prayers coming because we need some good, sunny days with her to do fun things like swimming with the dolphins!



Sleeping through our flight (head support not that great...we had to keep picking her head up)!


So good to see Grandma!


View from the pool area after the rain (Reagan and Teri are relaxing)...

Friday, September 16, 2011

Twas the night before our trip

Oh my goodness...I feel like I've been running around like a chicken with it's head cut off, trying to prepare for this trip. Here we are, less than 8hrs til we leave. I'm still a little worried I might forget something. Lots to take. Lots to forget. Hopefully we make it there with everything we need. Our flight leaves at 6:30am Sat morning and we've already gotten an email from the airline telling us that the airport is under construction and we should arrive 2+ hrs early...for a 6:30am flight!?!?! We'll be there by 4:30, but probably not a minute earlier. Reagan has been a bit of a crank today. Similar to yesterday, only maybe a little more fussy. She slept all night and then woke this morning none too happy. She doesn't want to be put down AT ALL (which makes diaper changing quite the ordeal). We're still not sure what to think about all of this. I'm hoping she's just having a very mild bad streak and we're going to miss the worst of it. Wouldn't it be great if by tomorrow she was already feeling better? I can wish, right. Well, hopefully she has some good days on our trip because this child has a resort wardrobe like no other. Grandma went a little crazy buying her 12+ bathing suits, 8 cover ups, and an entire collection of Gymboree outfits. At least one of us will be looking good on the beach. Me, on the other hand, I've gained about 14lbs (and I'm only 14 weeks pregnant) and I feel like I look like I'm about 7 months pregnant!!! Ugh. Definitely not the beach vacation that I had originally envisioned!! And what about MY mixed drink?!?!? Someone had better make me a virgin so I can at least pretend. We're also a little worried about the weather. My sister sent us a forecast for the upcoming week and it showed lots of showers. I sure hope that it's just the occasional shower and we do get some sunshine on our trip!! And poor Bear (our lab)...he's definitely going to miss us. Although, with our neighbor coming over to let him out multiple times a day, he'll probably get more attention than when we're home!! Please keep it in your prayers that Reagan has maximum number of good days while we're gone, that we make it through the airport with all our stuff and without killing each other, and that we have a safe trip and everyone stays healthy!!!!

PS...I'm going to try my best to continue my daily posts during our trip.

Thursday, September 15, 2011

Not herself

The new night nurse came 15min early last night and then I spent the next 3hrs explaining "everything Reagan" to her. Needless to say, I didn't get to bed til after midnight. Reagan slept from about 11:30pm-4:30am...when the pulse ox (that the nurse insists on her wearing at night) went off one too many times and woke her up. It also woke me up so I got up and checked on her. The nurse changed her diaper and then Reagan fell back asleep maybe 15min later. She slept in this morning til right around 10am. We noticed her heart rate had gone up a little (even before waking) and when she woke up, she wasn't the same smiley, happy girl we've had all week. She's been pretty serious all day with the occasional crying meltdown (set off when we use a tone of voice she doesn't like). She has given us some sad, little laughs but you can just tell she's not feeling herself today. Her hands and feet are noticeably cold and a little clammy. I'm not sure what this means for tomorrow. I'm not even sure what this means for tonight. She's very sleepy but she's also very restless...constantly jolting herself awake. I'm hoping maybe we can get by with just a couple mildly "bad days" like this and skip the bad "bad days" altogether. Otherwise our early Saturday morning flight is not going to be a pleasant one...for anybody. Please keep her in your prayers!!!

Wednesday, September 14, 2011

Squirmy worm

Reagan slept well again last night. She was actually still asleep at 9:30am when I went in to check on her pump (because it should have been running low on formula) and I found out that I never turned it on last night!!! So all night long she was fast asleep with no food!!! Ugh. I blame it on pregnancy brain. Anyway, all the commotion woke her up, but she woke with a smile and has been a sweetie again today. Very rolly and squirmy...she's like holding a worm, she's so wiggly. She had OT and speech today and she did great for both. Then afterward we went to pick up the helmet they made for her bad days. It kind of looks like a pink hockey mask. I'm not sure how well it will work (and I definitely think they're going to have to add a pad to the chin strap to keep it on and make it more comfortable), but we'll see. Definitely worth a try. Anything to keep her from biting a finger off! This afternoon she did that weird grunting thing again (like she did Sunday night). I'm still not sure what that's about. This time around she didn't get all red in the face and sweaty, but her breathing was clearly off and she was grunting over and over again. I'm clueless as to what's going on with that. She only did it for maybe 10 min or so and then she was fine. Weird. Tonight we had the new night nurse start. I spent a lot of time explaining things...a little exhausting to do in the middle of the night. It looks like Reagan is going to sleep well though so it may be a dull night for the nurse. Still no clue what she's going to do as far as good/bad days for our trip. She's going on a week of good days which is her usual max. I'm starting to stress a little bit now with only two more days left to pack and knowing that we have to be at the airport by 4:30am on Saturday. Not going to be fun. I'm sure the Bahamas will be worth it though...please keep up those prayers for good days!!

Tuesday, September 13, 2011

Ball of energy

Reagan was a little crazy last night. She fell asleep in Mike's arms, but the second he got up with her to lay her down, she was wide awake. I took her and about an hour later (12:30am), she finally fell back to sleep and stayed asleep. She slept til 4:30am, when we woke to her "talking" in her bed. She continued to do this, pretty much nonstop, til 7:30am when I gave up on sleep and picked her up. She's been super sweet and smiley again today. She had a very busy day with OT this morning, "school" at noon, and then PT at 2. She actually tried to fall asleep during OT but after much coaxing her nurse finally got her awake again so she wouldn't have to miss any more "school" (the last several times she was either having a bad week or sleeping). What's funny is that ever since she woke back up, she's been a ball of energy! Moving, moving, moving. Super rolly. And putting her hands in her mouth (not just in her hair anymore). Whole thumb in the mouth, several fingers, this is definitely a new thing. I'm still not sure what to think about this week. We're leaving for our vacation in just a few more days and I'm still clueless as to what Reagan is going to do...it's so hard to read her. Please keep it in your prayers that she has as many good days as possible in the Bahamas!!!

Monday, September 12, 2011

Haircut take two

Reagan slept well again last night, so much so, she slept through til 11am!! She's been a precious girl again today. Super smiley, super sweet, and quite vocal...just a doll. Lots of moving today (not really sure if I'd call it chorea or not) but she's been very rolly and squirmy all day. Hand in the hair at all times. She's really become a pro at getting the sock off her hand. We can't use one that's at all loose or she'll have it off in two seconds...but even with a tighter one, she can still figure out how to get it off. Sometimes she uses her teeth, sometimes she puts it under her leg and then pulls it off, sometimes she puts it behind her head and pulls it off that way, and sometimes she just grabs it with her left hand and pulls it off. She's really gotten creative! That is one of her few skills that there's no doubt, it's intentional. We took her in this afternoon to get another haircut. This girl's hair grows fast like her mommy's. The same lady did it as the time before...although I think she cut it a little shorter this time around. She said she was only cutting about 1 inch or so, but then she went back in and layered it and thinned it out, cutting way more than that. It's still super cute and so much more practical. Now when she pulls it into her face, it doesn't look all scraggly...it still looks cute! I think it will work much better in the Bahamas too (getting in and out of the pool/ocean).





She was moving so much, we had to hold her head still (but look at her...still smiling)!

Oh, and the nurse that was supposed to start tonight...she's a no show...again!!!

Sunday, September 11, 2011

Calm and content

Reagan slept well last night. This morning she was still asleep at 8am when Mike went in and checked on her...but 15min later she was awake and had rolled over on her tube causing it to kink, pop open, and then leak all over her and her bed!!! Always a fun thing to deal with first thing in the morning. She's been a good girl again today. Still a little sleepy at times, she took a good long nap this morning (she must have not been ready to get up at 8). She's been super calm and content today. Happy to just roll around on the floor or lay in your arms. She has had some constipation issues though. She was going on a week today since her last "movement". I broke out the glycerin suppositories and she eventually went this afternoon. What's weird is that later tonight she started grunting, turning red, sweating profusely (something I've only seen her do when she's "got to go")...but she never went again. She carried on with the strange behavior for a while and then finally fell asleep and slept for 15min or so and then woke feeling fine again. Not sure what that was about. I think she's in for another good night's sleep tonight. We're supposed to have a "regular" night nurse starting tomorrow to work Monday and Wednesday nights...I'll believe it when I see it. Of course it would start on a week that Reagan is actually sleeping!! Go figure.

Saturday, September 10, 2011

Sleep, sweet sleep

Reagan slept like a log last night...and most of the day today! She was still fast asleep at 12:30pm when I finally had to change her soaking wet diaper. That woke her up, but she woke super smiley and super precious. She was a complete doll for a couple of hours until she fell back to sleep watching her sing along video. She slept from about 3pm-9pm, when (you guessed it) I had to change her diaper again. She woke up with smiles and was a darling for another couple hours, and then she dozed off in my arms. I just love it when she's like this. Not the sleepy part (although it is great that she's finally getting some rest)...the content part. On her good days, she's just SO stinking good!!! That's why it sucks that she has to go through the bad days. She WANTS to be a good girl...but her body ruins it for her. I have no clue what to expect for our trip. We've got one week to go and I'm not sure what we're going to be dealing with. Jekyll or Hyde. It almost would have been better for her to have her bad week this coming week (to get it out of the way before we leave), but I don't know if that will happen since she's just getting over a bad streak. Best case scenario would be that she could go two full weeks with just good days (but I'm afraid that might be a little unrealistic since that's only happened once). If we could just get a very short, mild bad streak...that would be fine too. We definitely need some prayers in this area.

Friday, September 9, 2011

Turning a corner

Reagan fell asleep in her chair around midnight last night but she woke the second we tried to put her in her bed. Mike stayed up with her for another hour or so until she fell back to sleep. This time he left her in her chair and "we think" she slept through til 7:30am. When she woke this morning she was still very startled looking, having chorea outbursts where she'd yell or run in place, and making a few gaggy faces. We'd see her make a frowny face and then seconds later we'd see a hint of a smile. She was questionable for the first hour or two that she was awake but then we could clearly see that she had turned a corner. Her hands and feet were normal temps, she stopped making gaggy faces (and was considerably less spitty than yesterday), and we even got some laughs out of her! Oh how I have missed those laughs! She's been sweet and awake all day but tonight you can tell the exhaustion is hitting her. When she fell asleep tonight, she was OUT. Her pump even went off for a while before we heard it and she didn't move an inch. I'm so glad that she's finally going to get some decent sleep...in a real bed!!! I'm hoping we can all get some good sleep over the next few days. This bad streak really wiped us out! Thank you all for your prayers!!!

As a side note...we've tried just about everything for Reagan's nausea. She's been on round the clock Zofran, Phenergan, Scopolomine patch, Periactin...none of which did anything for her. The only thing that has ever helped is Nortriptyline, which she's still on, I'm wondering if maybe it's time to increase the dose again!?!?

Thursday, September 8, 2011

Out of control nausea

Reagan was up pretty much the entire night last night. She started off last night the same way as the night before...crying. Eventually she stopped and then she was just gaggy and awake. I laid on the sofa next to her (in her brown chair because she couldn't lay down) and just kept watch so she didn't choke...but I don't think she ever even dozed. She was having lots of nausea and lots of chorea (and she's super hypersensitive)...and that pretty much sums up her whole day. The nausea has been out of control all day..if she wasn't throwing up, she was gagging, retching, or making gaggy faces. This is by far the worst nausea we've seen in a very long time. She only threw up a couple times during the day but she threw up A LOT tonight. She's just so spitty, she can't control it, it's constantly choking her. I've drained a ton of fluid out of her g-tube...but that doesn't seem to be helping. She's miserable. And poor thing...she's SO tired tonight but the nausea keeps jolting her awake. I really hope she can get some sleep tonight and sleep off this nausea. Please say lots of prayers for her tonight! We need an end to this horrible bad streak!

Wednesday, September 7, 2011

Horrible night, nauseous day

Last night was probably the worst night we've had with Reagan in quite sometime. We put her down to bed and then literally the second we crawled into bed, she woke up and was irate! I'm talking kicking, screaming, flailing...she was hysterical!!! This continued most of the night. She'd fall asleep for short periods of time, only to wake hysterical again. It was another looooong, painful night. And shocking because yesterday afternoon Reagan seemed to be feeling a little better and making a turn (we thought) for the better. Last night proved us wrong. Today she's been a little less fussy. Still having tons of chorea, still very agitated if you lay her down, still very on edge...but not screaming, crying anymore. This morning the nausea also started. It was off and on throughout the day...she was making lots of gaggy faces but never really throwing up. Tonight it has been much worse. She's gagging and retching a lot and she's also had quite a few big, foamy throw-ups. It's painful to watch. She looks miserable. Her hands and feet are icy cold but her body and cheeks are hot and sweaty (and she has a very strong "bad day smell" even though we just gave her a bath). I keep trying to hold her just to let her air out (her back gets so sweaty sitting in her chair), but she's so hard to hold right now, kicking and arching and gagging. I hope she can sleep tonight. When she dozes off, that's the only time she gets any relief from this type of relentless nausea. Please keep her in your prayers. She needs some good days and she needs them now!

Tuesday, September 6, 2011

Moany/Fussy

Reagan fell asleep last night sometime around 10:30 or so. We laid her on her wedge in the living room where she slept til about 2am. She was WIDE awake (and fussy), so I stayed up with her from 2-5am until she fell back to sleep. I tried laying her back on her wedge but 5min later, she was back awake. Mike got up and put her in her brown chair and she fell back to sleep quickly and then slept through til 8:30am. She was VERY fussy this morning. Lots of moaning and crying...pretty much nonstop. Then around 1pm this afternoon the moaning/crying stopped. She was still frowning and not happy by any means, but at least she was finally quiet. She's having a lot of chorea today. Moving, moving, moving. She's also still trying to bite herself. We've had to keep either the arm restraint on her or something (thick) over her hand at all times (even though her hands are still super clammy). It's been a tough last couple days. I'm hoping for a better day tomorrow...but I'm not that hopeful for sleep tonight (she's looking pretty wired right now). Please continue to keep her in your prayers!

Monday, September 5, 2011

Miserable girl

Oh what a difference a day makes. I knew it was coming but nothing really prepares you for a miserable child. Sleep was OK last night. Reagan woke up only an hour or two after going to sleep but Mike laid down beside her and she was back out in less than 10min. She slept til about 7:15-7:30am. She didn't wake up miserable, but you could tell she wasn't the happy, laughing girl from yesterday. Her nurse had her on the floor and out of no where...she had a couple big throw ups (some of it yellow). I hooked her up to drain her g-tube and immediately a bunch of yellow bile (from her intestines) came out. You could tell she just didn't feel good. I don't know if that's what started the crying or if she had been crying some before that. It wasn't just a fussy cry, it was a screaming piercing cry like she was in pain. She did this off and on for the rest of the day. She'd sleep for short periods of time and then wake up screaming. Scream, kick, and bite for a while (long enough to wear us out) and then fall back to sleep for a bit. Off and on. Off and on. It's been a loooooong day. I'm hoping for some sleep tonight, but I have no clue what to expect. Please say some prayers for our miserable girl.

Sunday, September 4, 2011

Silly girl

Reagan was a turkey last night. She woke us around 4:45am "talking". She continued to "talk" to herself nonstop...finally around 8am I gave up on sleeping and got up with her...and she's been talking ever since! She's definitely wired. It's nice to see her happy but I'm afraid that this craziness is a sign of bad days to come. Her hands and feet have been a little cold and clammy today...another early warning sign. All day she's been super vocal and tonight she's added the laughing. We can't keep her quiet. I don't know if she's ever going to get to sleep tonight. She is one wild child!!!


video

Don't forget to pause the blog music at the bottom of the page so you can hear this silly girl!

Saturday, September 3, 2011

Precious

Reagan has been a precious doll again today. She slept well last night and then woke up smiling this morning. Her speech therapist came by this morning at 11am to make up her missed session from last week. Reagan interacted well with her but then dozed off literally minutes after she left! She took a nice little nap (and mommy got a nap too) and then woke up just as sweet as before. She's been pretty mellow today..."talking" to us in that sweet little soft voice. Super precious. I'm not really sure why she's been so sleepy lately. Normally she's pretty wired during the day and doesn't take a single nap! She slept 2-3hrs today, less than the last several days, but a pretty long nap nonetheless. Hopefully she still sleeps tonight and wakes up a precious girl again tomorrow.

Friday, September 2, 2011

Super sweet

Reagan slept last night. She woke this morning all smiles right around 8:15am. She's been a super sweet, easy going girl today. We had a new nurse working (to test her out...she'll actually be working Wednesdays) and everything went pretty smoothly. Reagan did try to pull another sleepy one on us right as her speech therapist got here. The nurse was reading her a book and next thing we knew...those eyes were shut. I had to pick her up, talk to her, and move her around and I was finally able to get her to come out of it. She actually did pretty well with both therapies today (she had vision this afternoon) and she never really dozed off again. I did give up on the morning dose of clonidine though. Reagan was just too sleepy the last couple days...giving her clonidine on top of already being sleepy would have really knocked her out. We were hoping to get her up to 1mg a day (to see if it helped with her "bad" days), but for now we're holding steady at 0.05mg 1x a day (pm). Not a lot of plans for this weekend...just take it easy, I guess. Hopefully we have some good/happy/awake days with our girl. Only two weeks til the Bahamas!!!

Thursday, September 1, 2011

More sleep?!?!

Reagan did not want to go to sleep last night (probably because she slept the majority of the day yesterday). Finally, right around midnight, we were able to get her back to sleep. She slept this morning til about 8:30am. She woke happy and smiley but she wasn't awake long. She dozed back off around 10:30am and she was OUT! She slept through "school" at noon and then slept through PT at 2pm (although her therapist did come and stretch her anyway...she mentioned that she was really tight for being asleep). She slept til about 4:30pm when she FINALLY decided to wake up!!! She woke a sweetie and was quite the darling all night. She did doze off on my lap around 9:30pm but woke as soon as we tried to put her in bed. I'm not quite sure what's going on with her. Two sleepy days in a row...that's very unlike her. Tonight I noticed she did have a little of the "bad smell". I hope it's nothing...it's very likely it's just sweat (the l-carnitine makes her sweat smell like fish). I always get a little nervous when she starts changing things up on us. It sure would be nice to have some good AWAKE days!!! Please keep her in your prayers!!!