Saturday, August 31, 2013

A little bit kooky

Reagan had another good day today. She slept well but was raring to go at 7am! She was a little on the kooky side this morning. Easily excitable (very vocal), temp control WAY off (super sweaty head and back), lots of chorea. We're trying out having a nurse 7 days a week, so this will be the first weekend we've had nursing.  All of our nurses in Austin have been good, so I am very thankful for that. We're going to see how it goes and it will be good to have some extra help on weekends when we're settling into our new house and preparing for our trip to Mexico. Update...we have found a house and are set to close on it Sept's two story (I would have preferred one story but we weren't finding any big enough in our preferred neighborhoods), it has a huge room perfect for Reagan's therapy room, and it has a pool!! We also have an upcoming trip planned Sept 23-30 to Tulum Mexico for my sister's wedding (everyone is going, including Reagan's pediatrician's nurse)! We're definitely going to be busy! My dad and stepmother are actually leaving tomorrow for a 1.5 month trip where they'll bike from Seattle to San Diego (crazy, right), so we'll have the house to ourselves until we move out! Ryan is going to go through serious withdrawal as he has become super attached to my dad! No doubt he'll be attached at my hip and driving me crazy for a while!

Friday, August 30, 2013

Sweet and Compleat

Today has been another good day for the princess. She slept well (I think) and woke up super sweet and smiley! She's been a little easily excitable (vocalizing, laughing, and squealing here and there), temp a bit off (sweating her shirt wet), and an overall increase in chorea tonight...but other than that, all has been good. The new GI doctor gave us some samples of Pediatric Compleat to try (the blenderized diet formula), he's interested to see how she'll do with complex carbohydrates. We waited to switch her til today. So far the only thing I've noticed is that she's gotten the hiccups 3x. He also ordered a new upper GI with small bowel follow thru and a renal and abdominal ultrasound. As well as something called an anal manometry test (because of her "clenching"). These are all fairly non-invasive tests, well I don't know about that, but at least they don't require anesthesia. He also wants her to try Periactin again (for her nausea). I'm going to wait to start that until I see how she's reacting to the new formula...maybe she won't need it. He'd like for her to have the abdominal ultrasound during one on her nausea spells (as well as some bloodwork), so we'll wait on that as well. Again, I can't say how pleased I am (right now) with the new medical team we're assembling! I'm hopeful that we're finally going to have a group of doctors that will work together in Reagan's best interest and hopefully get to the bottom of these cycles she's been dealing with for years! Hoping and praying for more good days this weekend for my girl!

Thursday, August 29, 2013

GI appt times two!

Reagan slept like a log last night! She probably would have kept sleeping but we had to get her dressed and ready to go at 9am for her 10:15am GI appointment. We got there just in time to find out that our appointment wasn't until 2:30pm in the afternoon!! Apparently they had switched around the schedule but failed to notify us! They spoke with the doctor and he agreed to try to squeeze us in to the schedule, but shortly thereafter he darted out of the office over to an emergency at the hospital. After waiting another hour and still no sign of him (and Ryan melting down and trying to steal another kid's sippy cup in the waiting room), we decided to pack back up and head home! Unfortunately this was not an appt we could afford to miss, so we headed back in the afternoon (minus brother). It turned out to be a promising appt with another great doctor! I have lots to report but since my phone already ate one copy of this post, the rest of the update will have to wait til tomorrow!! Reagan had another great day today! She was very calm and smiley...although a little floppy mopsy! She had a great session with OT late this afternoon. Then tonight she had a liquidy diaper that I changed and then decided to give her a bath...and she ended up relaxing a little too much and going some more in the tub! It was a chore, but we got it all cleaned up! Silly girl! So glad for another good day for my sweetie!!

Wednesday, August 28, 2013

Good day

Reagan has finally had a good day!!! She slept well but woke up a little whiny. I was definitely a little worried, but she pulled through and had a great day!! She's been a lot more relaxed today and even a little smiley and laughy at times. So good to see her feeling better (although her hands/feet were still super cold and clammy tonight)! She's got an appt tomorrow (Thursday) with her new GI doctor and I'm hoping we can get some good input from him!! Hopefully she has another good day tomorrow!

Tuesday, August 27, 2013

Tears but improved

Reagan still didn't sleep much last night but she FINALLY turned things around today! The morning started off a little rough. She was OK when she first woke up (surprisingly still actually), but an hour or so later broke out into full blown crying! We couldn't figure out what was wrong until we noticed she had a dirty diaper! Darn tummy pains...they get her every time! She did calm down and sleep for a bit afterward. When she woke back up, she was still very weepy and we were beginning to get really discouraged. Finally she settled down and she was calm all afternoon (still very much on edge, but calm). She had OT and actually did a great job with that, and then we were able to give her a much needed bath. After her bath she seemed to feel a little better. She was a sweet girl tonight, but she'd still let out a whimper here and there (especially when you tried to move her). She fell asleep with the help of clonidine and I'm hoping for a good night's sleep for my girl! Thank you for keeping her in your prayers!! (There's a slight hint of a smile in the pictures below...)

Monday, August 26, 2013

More of the same

Today has been another rotten one for the record books! I mean, seriously awful. My girl was up a lot last night crying and was brutal. And then she's been about the same the whole day through. Lots of crying, kicking, thrashing, biting, & sweating! Her eyes are so swollen from all of the crying, she can barely keep them open! It's such a horrible feeling watching her suffer like this...there's no way to describe it. Unless you've been in our shoes (and thankfully most have not), you really can't imagine. Her nurse even said that today...even though she knew about these "bad days" and I had told her about them in full detail...she had no idea until she saw it first hand! It's very upsetting! I went ahead and cancelled her dentist appt and all therapies today and we just laid low. There was no medicine that worked and nothing we could do to console her...but it wasn't for a lack of trying! Ugh. What a day. Please keep it in your prayers that she finally gets the rest she deserves and that tomorrow she wakes feeling like a new girl! I'll leave you with a picture of Ryan "riding" Bear!! Giving us a bit of comic relief to our stressful days! He really is such a good dog!

Sunday, August 25, 2013

Horrible, miserable day

Reagan woke fussing around 4am last night...she did eventually go back to sleep (with the help of Lortab), but it was foreshadowing the day to come. Reagan woke OK, she was having the crazy laughs, but she was still OK. Then the laughing turned to crying (as it often does), and that pretty much sums up the rest of our day! It was a MISERABLE day. Horrible! For her, for us...for everyone! Nothing seemed to help her (ibuprofen maybe a tad), but she was crying/yelling most of the day! It's definitely something we could have seen coming, but we always hold on to hope that she'll pull through, even when she starts the downward spiral. But it didn't happen...not today. She cried and fought and yelled until the moment she dozed off. Not telling how long it will last...she's in her chair because we knew the bed would never work. Praying she can get some rest and sleep some of this badness off!!

Saturday, August 24, 2013

So tense

Not really sure how much Reagan slept last night. She was wide awake, kicking and squirming when we got up this morning. Today has been very similar to yesterday. Reagan has been super tense, non stop moving, temp regulation off...basically a bad day without the crying. I'm not really sure what's going on, but I don't like it! I sure wish her body would give her a break! She needs some "real" good days! On a good note...I noticed today that her cavity is gone! So either what I thought was a cavity was just a black or purple piece of lint stuck to her tooth (it's happened before) or she was miraculously healed! Either way, I'll take it! We'll probably still go to her dental appt, but at least I can breathe a little ( I was really worried about her having to go under anesthesia to fix it)! Hoping and praying for some "real" good days for my girl!!

Friday, August 23, 2013

Weird day

Reagan slept well last night but this morning we found her turned completely sideways in bed! She was as stiff as a board when I picked her up...and she's continued to be very tense all day. Temperature regulation way off, lots of clonus in her legs (contracting her muscles and shaking), hands constantly in her mouth or pulling her hair. She's also doing this new thing I've noticed this past week. She'll bite her lower lip. A lot. I did notice a few days ago that behind her front right tooth there appears to be a huge cavity. It's black right along her gum line. She wasn't supposed to see a dentist until the end of January (that was the first available appt at Dell Children's), but I called and they were able to work her in for next week. So I don't know if it's been bothering her and that's why she's biting her lip or what?!?! She was also been a little groggy today. A weird combination of tense and groggy (taking little naps here and there). It's just been a weird day altogether. I'll leave you with this picture of her when she dozed off this morning...she looks like a little fairy princess!!

Thursday, August 22, 2013

Good day

Reagan slept well last night and woke up this morning feeling SO much better!! The nausea is girl finally caught a break!! She's had a really good day today! She had three therapies (PT, Speech, & OT) and she did well with them all! Tonight she was having some temperature regulation issues (super cold hands/feet and sweaty back), but other than that she's had a really great day! Hoping for many more!!

Wednesday, August 21, 2013

Nausea returns

As I mentioned in yesterday's post, many of my recent posts were dated about a nightmare trying to go back and get them right! Note to self, fix it right away and don't let it go two weeks again! I'll be happy when I have my laptop up and working again (right now I'm borrowing my Dad's). Anyway...last night was another rough one for Miss Reagan. I'm not sure what's going on with her but she's really making nights rough for everyone right now! Two nights in a row with little to no sleep. I honestly don't know if she slept at all. She kept waking us up fussing. Not a good night! But other than being a little sensitive to talking or music on TV, she's been in great spirits! She had a good session with speech where she fed her and then a great session with PT as well! We were able to get her neurology appt moved up so we met with her new neurologist today. I really like him. He's from Houston so he knows all of her doctors but he also just seems to be a kind, caring individual (which is rare in the field of neurology)! He seems to be on board with us trying the ketogenic diet again with Reagan...this time for GI/sleep issues instead of seizures. On our way home I snapped some darling pictures of my sweet girl in the back seat! Shortly after getting home, she started getting nauseous (she had been doing some mouth movements that indicated she might be nauseous). Nausea then turned into vomiting and it was a long night! Poor girl! She was SO nauseous, but she just kept that smile on her face the whole time!! She dozed off tonight and I'm hoping and praying that she's able to stay asleep (since that's the only thing that helps it pass)!!! Thank you for keeping our sweet girl in your prayers!

Tuesday, August 20, 2013

Rough night

First of all, please forgive me for all of the dates being wrong on my posts! Many if my posts are done after midnight, so it will post it to the wrong day! I can't figure out how to change that on my iPhone and my laptop is dead (and its power cord is packed up in a box somewhere)! So until I get on another laptop to fix it, my dates are going to be a little off!
Reagan had a miserable night last night. Shortly after we laid down, the crying started! It continued (off and on) the entire night!! It was awful! We were exhausted, she was exhausted,,,what a mess! When I got up her this morning she was stressed and kept making noises that made me think she might need to poop! She wouldn't do it on her own, so I had to help. I'm not a fan of doing that, but she definitely seemed much relieved afterwards and never had another outburst the entire day!! She had OT this afternoon and even that went well! She was definitely showing signs of bad days...sensitivity to noises, bad day smell, super sweaty back, lots of chorea/kicking, cold & clammy hands and feet! I'm not sure where she's headed but I sure wish she would get some sleep tonight! Please keep her in your prayers! We were able to move up her Neuro appt to tomorrow (it wasn't scheduled til Oct), so I'm hoping she'll behave herself!

Monday, August 19, 2013

Bad days already?!?!

I am so frustrated right now! How can it be? I'm praying this is just a little hiccup and Reagan will wake up feeling loads better tomorrow...but it's not looking good! She has been very much on edge again today. She had her drs appt with her new pediatrician (who, by the way, I think is going to be great) and she started tearing up when he came in and was asking questions! I felt bad, but I had to ask him to whisper! He thinks Ryan's crud is just allergies! (Poor guy, I'm afraid he got that from me!) We're gonna start him on Claritin and see if it helps. Reagan continued to be tense all day, but she managed to go without any major meltdowns...that is, until tonight. Tonight you could tell she was escalating. She kept making noises and tearing up, then next thing we knew, we had full blown crying. Clonidine didn't seem to help (it may have made things worse), but thankfully the Lortab helped to finally get her to sleep (in her chair). Please keep it in your prayers that somehow, someway she turns this around tomorrow! I'm so upset for my girl!

Sunday, August 18, 2013

Not what we expected

Reagan slept well last night and woke up smiling this morning. We could tell she was a little on edge, but we figured she'd be OK. She did have a couple of big (wet) I'm afraid her brother may have passed his sickies on to her (although he's still fighting them himself)! Grandma drove in just for the go take a look at the house we're trying to buy. Ryan was beyond excited to see her and wouldn't let her put him down! Reagan was escalating a bit with all of the talking and excitement, so we had to give her some clonidine before leaving. She dozed off right as we got there and slept in her stroller the whole time. She woke up just as we were leaving and then really let us have it in the car! This is definitely not what we were expecting to see today!! We were expecting smooth sailing and what we got was anything but! She mellowed out with the help of some Lortab but we had to walk on eggshells the rest of the day with her! Very frustrating!! I'm hoping she wakes feeling a little better tomorrow! She's got her first appt with her new pediatrician tomorrow!

Saturday, August 17, 2013

Smiles and laughs

Reagan had a good day today. She slept well last night and even slept in a little this morning! She woke up with an extremely wet diaper (that leaked everywhere) but she was smiling, so that's great! The smiles and laughs lasted all day today, even with her brother's many meltdowns! He's still feeling lousy and he's SO pathetic. The coughing has increased and his nose is a runny mess! Reagan has an appt Monday with her new pediatrician and it looks like brother will be tagging along to get checked out as well! Tonight Reagan seemed a little more sensitive to us talking, she'd get a little vocal as if to say she wasn't happy with us. She settled down though and then dozed off around 9:30pm. I'm hoping both kiddos stay down and wake up with smiles in the morning!

Friday, August 16, 2013

Better but still tense

Reagan slept well last night and woke tense but calm today. She was noticeably better and even quite laughy at times. She was still a little groggy this morning and fell back to sleep for a good part of the afternoon. But she woke in a good mood and had a great session with her OT. At the end, she was doing some tummy time and she must have gotten things moving because next thing we knew she had a big stinky diaper. Thankfully we had waited to do her bath til the end of the day! She seemed to enjoy it at first, then halfway through her bath, she began to freak out! I don't know if her tummy was hurting or what, but she was really upset! She cried until we got her dressed and then she calmed down a bit. She continued to be on edge the rest of the night. Her brother's fussing really seemed to annoy her (he's still fighting the runny nose/cough and has been super fussy)! Both kids went down fairly easily tonight, so I'm hoping for a good night's sleep and happier days are in our future!

Thursday, August 15, 2013

Rough nights

Last night was a rough one for Reagan. She cried off and on and then spent most of the night awake thrashing around (first in her bed, then in her chair). She was calm though this morning, so we were very relieved at that. She's still super tense...stiff as a board and very sweaty...definitely off. We all walked on egg shells with her all day. We were careful not to talk amongst ourselves, to keep the tv volume low, to keep crying brother far away...and it worked for the most part. She had a few occasions where she started freaking out a bit, but we managed to get her back under control. She was a little gunky and threw up a couple of times, but she didn't really seem nauseous per say (I did drain a bunch of fluid from her tummy though). She even made it through PT and OT today (with a little precoaching from me) and all went well. Until tonight. We went to look at that house one more time and we took her crazy snot nosed brother with us (not sure if it's teething, allergies, or if he's really getting sick), but sometime right before we got back, she freaked out on Grandpa! We walked in the door to crying and then spent the rest of the night trying to calm her down. Finally around 10:20pm she dozed off so I'm just hoping and praying she'll stay asleep! We really thought we had skipped over the bad days this go round...I'm hoping we were right! I'm not sure why she seems to be having such rough nights, but I pray that she feels better by morning! Thank you for keeping our sweet girl in your prayers!

Wednesday, August 14, 2013


Reagan fell asleep in her chair last night and in an attempt to keep her asleep, Mike had to carry her up the stairs (in her chair)! It worked for a while, but she eventually woke back up kicking. She kicked and thrashed around for a while...and then around 5am I got up and gave her another dose of clonidine. It worked and she did eventually fall back to sleep and slept til 8am. She's had an OK day today. No crying, but still VERY stressed. Therapy was pretty much a no go. PT came but Reagan was not too cooperative, so I told speech not to come. She was still very throw ups, but lots of gaggy faces. Ryan has also had a pretty rotten day. I'm not sure if he's sick, or if it's just allergies or teething, but you can just tell he feels awful!! He was very restless last night, and seems to be the same tonight. Reagan fell asleep on the sofa beside Mike and she has been OUT. So much so, I had to check and make sure she was breathing several times. I'm hoping she is able to sleep it off tonight and wake up happy tomorrow! (Please forgive all of the now corrected spelling errors! Apparently I was dozing off as I typed this post last night!)

Tuesday, August 13, 2013

Over the edge

Reagan was very restless last night. She slept a little, but not much. She woke up tense but smiley. You could tell she was definitely on edge, but she was OK. Her body was SO tense, she was in constant extension, lots of kicking/chorea and teeth grinding! Cold hands and feet, sweaty back, just all around clammy, but she held it together. That is, until tonight. Her brother's fussing was really getting to her. Poor guy, I put him to bed and he proceeded to projectile vomit all over his pack n play! I'm still not sure if he got a hold of an old sippy cup (and drank some sour milk) or if something just didn't agree with him. We managed to get him calm and back in bed, but he keeps waking back up crying! And then it happened. Reagan was in bed. Half asleep one minute and crying the next. I'm hoping somehow, someway she'll sleep through the night!! Please keep her (and her brother) in your prayers!!

Monday, August 12, 2013

A little on edge

Reagan slept well again last night. She woke up smiley but a little unsure at first. She's had another good day today, but this is the first day that you could tell she was a little bit on edge. Her body was a lot more tense, she was kicking and in extension a lot, making it very difficult to hold her. She was also a little sensitive to talking and the television. Other than that, all was good. No fussing at all, just a little more vocal. She was making some weird gaggy sort of faces, but she didn't really appear to be nauseous, so I'm not sure what that was about. Praying that she pulls through this and continues on this awesome good streak she's been having!

Sunday, August 11, 2013

Hanging in there

Reagan slept well last night. She woke up smiling but she was still very much on edge all day today. She held her own though and managed to make it through the day without any meltdowns. She'd let us know she was getting irritated (with our talking, music on TV, or her brother's fussing) by vocalizing. Her hands/feet were cool and clammy at times, but we're holding on to hope that she'll pull through and skip the bad days this go round!! We drove around this afternoon looking at houses. We actually saw one yesterday that we're thinking of putting an offer on (crazy to think we'd make an offer on the first house we saw). It's perfect for us...except the price! We would have to go in a lot lower than asking and they might not be willing to budge (in this hot market). Please keep it in your prayers that we find (and end up with) the perfect house for our family!!

Saturday, August 10, 2013

Sweet princess

Reagan slept well last night, but I did find her fast asleep, legs dangling from her bed this morning! She must have turned sideways at some point! When she did wake up with a leaky diaper I had quite the mess to clean up because she had completely squirmed off her waterproof pad! She woke up a sweet, smiley princess again today!! I'm so happy to see her so happy!! She was definitely more alert today, although she was still a little groggy and very still (almost limp). There was no shortage of smiles though! And big beautiful eyes! Ahhh, how I love this girl! Hoping there are many more good days ahead for my precious girl,

Friday, August 9, 2013

Another good one

It's been another good one for my girl! She slept well and woke super smiley again today! She tolerated AFOs and even ate some food! She's been such a sweetie! Tonight we did notice a nasty looking cut on her left ring finger. It looks like it's a few days old but still very deep. I put some antibiotic cream and a band aid on it and then tried my best to keep it out of her mouth til she fell asleep! I have no clue where that came from, but we definitely need to keep an eye on it! Praying for more good days for my girl!

Sleepy girl...fell asleep in her wheelchair!

Thursday, August 8, 2013

Oh so wonderful

Ugh! I just typed an entire post, only to have it disappear into thin air!! So frustrating! What can I say, it's been another great day for my girl! She's been sweet, smiley, and oh so wonderful! Loving these good days for my princess! She so deserves them! Now, her brother, well he's been a different story! He has been throwing some of the worst screaming tantrums imaginable! I sure hope it's just teething and that he's not really this rotten!!

Wednesday, August 7, 2013

Still tense

Today has been a tough one for Reagan. She slept well last night but woke up this morning around 9:30am crying! She was very tense all morning. I cancelled all therapies and we spent all day just trying to keep her calm. She seemed to be having tummy pains, so I had to help her go...poor thing. She seemed to get some relief and eventually fell asleep. She spent the rest of the afternoon sleeping for the most part (but when she did wake up, she was crying). She slept hard from 5pm and on (and she's still sleeping now). I'm hoping for a much better day tomorrow for my girl! We were expecting it today, but we'll take it tomorrow!!

Tuesday, August 6, 2013

Floppy/sleepy girl

Everyone slept well last night, so much so, we were still asleep when the nurse arrived this morning just before 8. Reagan continued sleeping...she may have slept the whole day through had I not changed her leaky diaper! She woke smiling and has been super sweet and groggy all day today. Very floppy, low tone. Super still. She did doze back off a few times, but not for too long. She had PT and Speech come for their first visits today. All I will say is that I definitely miss our group of therapists in Houston! We also still have no OT as of yet, so hopefully they'll find someone good to fill that slot soon. We're still living among boxes and we haven't really had any time to attempt to get anything organized (or look for houses)!!

Monday, August 5, 2013

New perspective

I think Reagan slept well last night...she was awake and kicking around this morning...but I think she slept! She's been a super sweet precious girl again today. Today was our first day of nursing and I think it went well. We actually had two nurses all morning (because one was orienting and one was working). Reagan has been a little chokey and making weird mouth movements here and there, but not really nauseous per say. This afternoon we had her first doctors appt with the palliative care dept at Dell Children's. It actually went really well. Much better than the whole parking fiasco. Online they have their palliative care clinic's info listed under 'specially for children's site (which is located in a different building than the hospital). So we went to that building, park in the parking garage, walk across the street, go in and up to the second floor, only to find out we were in the wrong place!!!! We ended up just walking over to the hospital, even with the heat it was still easier than loading back up into the car again! We finally found the place and it was one of those general intake sort of offices. A million people all there to see different subspecialties. The intake process went fairly quickly and they checked her vitals (she's still at 40lbs) and then put us in a room. We weren't in there more than 5min before the nurse practitioner and child life specialist from the palliative care clinic came to see us. We went over EVERYTHING Reagan. I'm really impressed with this clinic and their willingness to work with all of the other subspecialities to do what's in the best interest of the patient (they'll even hold a care conference with all the patients doctors to try to problem solve). Definitely a new approach compared to dealing with UT/Hermann and Texas Children's in Houston (where no one talks to anyone). So maybe we will gain some ground here with a new group of people doing their best to get to the bottom of what is going on with our girl!! When we got back out to the car, I can't even begin to explain how ridiculously hot it was! The temperature gauge on my car was reading 128! Reagan's chair was so hot, I had to lay a blanket down on it or it would have most certainly burned her! It was crazy. It didn't feel that hot just walking around, but I've seriously never seen my car so hot before! Thankfully we were able to leave Ryan home with my Dad...otherwise he would have died of heat exhaustion sitting back there (his chair is still back facing and the air vent doesn't blow on him)! Speaking of Ryan...he's definitely already hit the terrible twos. Screaming and crying, throwing fits about everything!!! I have no idea what we're going to do with this boy!

Sunday, August 4, 2013


Mike keeps saying to me, "You know we're homeless now, right"? I guess that's true. I haven't really had time to think about it. I feel like I've been running on fumes...I've been in disaster mode. Do what I have to do, no time to think about anything. I just realized today that we left without ever saying goodbye to several of our neighbors (including Reagan's favorite, Uncle Johnny)! That makes me SO sad! Our other two neighbors were such a huge help to watched Reagan and Ryan while we were loading the truck, while the other helped us pack and also cleaned our house for us after we left!!! How do you replace neighbors like that?!?! You don't! They were one in a million! We will miss them terribly! Everyone slept well last night, actually I could have slept a lot longer, but I had to get up at 5:30am to drop my mom at the airport this morning. Reagan has been good today. Giving is laughs here and there. Hands still a bit clammy and she's been making a lot of gaggy sort of faces, but no actual nausea so that's good. I'm hoping she'll be back to get baseline be tomorrow as we have a new nurse starting AND an appt with her new palliative care doctor. Another busy day. We need a vacation!! :)

Saturday, August 3, 2013

Goodbye Houston, Hello Austin!

Today was a looooong day! It was moving day! So much to do, so little time! Poor Daddy didn't get much sleep sleeping on the floor of the therapy room with Reagan (since we took apart her bed). Mommy and Grandma didn't go to bed til after 1am, but we did sleep in a little, not waking up til the movers called at 7:15am to say they would be late! No problem...we actually needed more time to pack anyway! They got there around 8:30am and were there til 11:30am. But we didn't leave Houston until after 4pm!! They filled a 26' uhaul truck as well as a 6x12' trailer (and we still didn't have enough room for our storage unit stuff)! We are SO exhausted!! Reagan did awesome! Despite not feeling her best, she took a nice little nap at our neighbors house while we packed and then after getting to my Dad's house she dozed off fairly quickly (right after taking a big poop)! Sorry but I do need to note (get ready for TMI), this poo was darker than usual and it was liquidy with a few big chunks. Definitely different with this new formula. Everyone is wiped out but there's no rest for the weary...tomorrow Mike has to unload a bunch of stuff in to storage, and I have to attempt to organize all of this clutter (so hopefully my dad and stepmom won't kick us out before we find a house)!! Oh, and one more bit of drama...our 10yr old lab fell out of the passenger seat of the moving truck and landed on his head at my dads house (and then was bleeding from his leg)!! I'm hoping he'll be OK

Friday, August 2, 2013

Horrible night

Last night was AWFUL!! Reagan woke up crying, literally that second I put my head down! She then proceeded to cry off and on the entire night!!! Poor girl. It was bad. But this morning, once we got her changed and in her brown chair, she calmed down. She was still very much on edge and super tense...but as long as you left her alone, she was OK. Two more therapists came by to say their goodbyes today. I'm sad that they didn't get to see her happy and smiling, but I'm even sadder to be leaving them!! Her speech therapist and vision teacher have really become like family to us!! We will miss them dearly!! Tonight we've been packing like maniacs! My dad flew in yesterday and my mom today. We picked up a moving truck only to realize we probably needed a bigger we went and also rented a trailer last minute, only to get raked over the coals!! Last minute prices will get you every time! Please keep it in your prayers that we have good movers show up and by some miracle, they are able to get everything loaded!! And prayers for a safe trip (with content children)!!

Thursday, August 1, 2013

Rough day

After only 5 good was a bit of a rough one. Reagan woke up crying last night and was very much on edge the rest of the day. She was easily agitated, so we all walked on eggshells (except Ryan of course, who made her cry a couple of times). Tonight she started back up with the crying...after a dose of Clonidine that seemed to make her more crazy than sleepy. Thankfully the Lortab did work, so she's asleep in her bed for the moment. Today was a difficult day in that we also had to say goodbye to our sweet night nurse (who's been with us for a year and a half) and our wonderful day nurse (who has only been with us a month and a half, but has been so great with Reagan)! It was also her last day of OT and PT. So sad. Only one more day. Yet there's still so much to do. I'm definitely stressed. Please keep it in your prayers that Reagan turns a corner and is better tomorrow (and sleeps tonight). I decided to go ahead and make the switch to her new formula tonight. I was holding off until we moved, but with her already having bad days's time to try something else! Please keep that in your prayers as well!