Wednesday, July 31, 2013

So sweet

Reagan has been a wonderful girl again today! She slept well last night and woke smiling. She had speech this morning, and then this afternoon we took her to get her hair cut. She did great with it and was such a sweetie! More packing today...but there's still so much to do!

Tuesday, July 30, 2013

Precious girl

Reagan slept well last night. I had to get up super early (4:30am) to take Grandma to the airport...but both kiddos were asleep when I left and when I came back. I went back to sleep around 6am and then didn't wake til 8am. At that point, both were already awake and ready to go! Reagan has been a super precious girl again today! She had OT and PT today and she did great for both. I took her dynamic AFOs in yesterday to get them tightened a bit (since she's been wearing them often and probably could handle a little more stretch). Today she also stood in her stander for over an hour after PT! It's so nice to see her feeling better...although she did have moments where she would get a little vocal and make us wonder if she was about to freak out! We did go in today to talk with her pediatrician one last time. We LOVE her and are going to miss her dearly. We've been discussing our options as far as formula goes and today we left with orders for both the Alimentum RTF and Ketocal. The idea is to give the Alimentum a try first...because the RTF version lacks corn syrup solids which are the primary ingredient in most other formulas and can cause major GI issues in kids who are corn sensitive (we don't know if Reagan is, but it's something worth looking into). And then if we don't see any improvement with that, then we can start the Ketocal. I've decided not to change anything until we get to Austin. I don't want to rock the boat before we leave! Please keep it in your prayers that she can hold on and continue to have good days through the weekend (but next week would be even better)!!!

Monday, July 29, 2013

Ray of sunshine

Reagan slept well last night. She started moving around a lot around 5am, but she was kinda half awake/half asleep. She woke up again this morning with the biggest smile and has been a total ray of sunshine all day today! Grandma was so happy to be here to see her girl so happy! Reagan had OT this morning and vision therapy this afternoon and she did great for both! We are SO going to miss our therapists (and our nurses...and our neighbors). We really have a great team working with Reagan right now and I'm so sad to go (please keep it in your prayers that we are able to find great people in Austin as well). We've been packing a lot. We are set to move out on Saturday and it's total chaos around here right now! We will be moving most of our things into storage and living with my dad and stepmother for a while. Originally we were thinking we weren't going to put our house on the market until we moved out, but we lucked out and ended up showing it to one person before we even put it on the market and that person made an offer and they are buying it!! Crazy! So once we get to Austin, it's time to do some serious house hunting!

Sunday, July 28, 2013

Sweet girl

Reagan and Ryan both behaved themselves last night. Grandma and our neighbor watched over them while Mike and I went to his highschool reunion. It was the first time we've been out in months and it allowed us to see a few friends we haven't seen in a while (and won't be seeing in a while since we're about to move)!! Reagan woke up this morning smiling and has been smiling ever since! Such a sweet girl...I sure wish she could be happy like this every day! She was a little sleepy this morning, but she was wide awake the rest of the day and such a happy girl! I'm still not sure what we're going to do as far as her formula goes. Do we keep her on her current formula until we see her new GI in Austin (but tweak it a little to get her enough calories to function)...or do we make a change now, since what we've been doing has not been working?? I'm still not sure. All I know is that I want more good days for my girl!!

Look at that sweet girl, smiling in her sleep! (brother focused on the tv)

Helping us pack

Saturday, July 27, 2013

Sleepy princess

Just a quick update! Today was definitely Reagan's sleepy day! She was awake and smiling this morning. Very sweet, a little obsessed with chewing on her fingers, but good. She was happy to see Grandma, but dozed off shortly thereafter and then slept most of the day. I know she needed it though, so it was a good thing. Thank you for keeping our sweet girl in your prayers!!

Friday, July 26, 2013

On the mend?

Reagan slept some last night...but not enough. Thankfully our night nurse was here again. She woke up and was not gagging/retching any more, but still very spitty/chokey. She has a tendency to let it pool up in her mouth (trying her hardest to keep it in) and then choking on it. Needless to say, we went through a lot more bibs/blankets again today. After talking with her pediatrician, we decided to decrease her rate back down to 55ml/hr...where she's been at for years (only she's still on the 20kcal formula, so we've got to be careful). We're thinking about switching her formula once again. I'm debating about whether we should try something completely different (like ketocal...the formula for the ketogenic diet...with the idea, if she has trouble metabolizing carbohydrates, maybe she'll do better with fat calories) or something that just has less corn syrup solids (either Alimentum RTF or Compleat a blenderized real food formula). Still not sure which way to go. We definitely need some direction in this area. Anyway, Reagan finally dozed off around 2:30pm and then slept til 8:30pm. She woke with a hint of a smile, less nausea (although still a little chokey), but still very tense in her body. Kicking around like crazy, sticking her fingers down her throat! Please keep it in your prayers that she gets a good night's sleep tomorrow and wakes up tomorrow with smiles feeling 100%!!!

Thursday, July 25, 2013

Relentless nausea

My poor girl. She was up all night again. This is the worst nausea we've seen in a very, very long time! Just relentless. We've drained a ton of fluid from her tummy, tried switching her over to pedialyte, tried Zofran, and Periactin...nothing is working. Time...time is what works...but it's painful to watch her suffer like this. We just sit here, dabbing her mouth, catching her throw up, watching her pale body struggle against itself. It's awful. Tonight she kept coughing and choking because the spit would pool up in her mouth and she instinctively tries to hold it in (thereby choking herself). Poor thing. She kept trying to doze off but her body just wasn't letting her. And then finally...FINALLY...she dozed off. On her own, without medication. I'm PRAYING that this is it. That she wakes up feeling better. No nausea. Please pray with me...
(Update- it's 11:50pm and she's back awake and still nauseous. I just gave her clonidine...come on our girl!)

Wednesday, July 24, 2013

Non stop gagging and retching

Horrible day again today. Reagan was up all night last night gagging and retching (thank God for our night nurse)! And unfortunately her day today was not any better. It was awful. Watching her gag and retch like that...all day's unbearable. Retching so hard, it sounded like she was going to cough up a lung. Just horrible. And she was so tense, but nothing would calm her down or help her sleep. It continued all day and all night. Finally around 10:30pm she started looking a little sleepy and she was out by 11pm. She fell asleep in her chair, but we were too afraid to attempt to get her to bed. Please keep it in your prayers that she sleeps soundly tonight and wakes up feeling much improved tomorrow!!!

Tuesday, July 23, 2013

Crazy nauseous

It's been another rough one for my sweet girl. She freaked out a bit when we tried to put her in bed last night, so she spent the whole night in her chair. She actually settled down and slept til about 6am, but after that she was awake and kicking around. She was still very sensitive to being messed with all morning...she freaked out when Daddy tried to go in and just check on her. She hated having her diaper changed and ditto for the hair. More time spent in her chair. The chorea has been out of control. Constant movement and little bursts of energy that the closest thing I can think to describe it would be watching someone in the electric chair. Not a good day. She's very zoned out, super sweaty and red in the face, but cold/clammy hands and feet. Then, to top it all off, she's been crazy nauseous tonight! I've drained a ton of fluid from her g-tube, but she's still gagging and retching nonstop. We'll be switching over to pediatlye tonight. Ugh. So frustrating. One step forward, ten backward. I gave her some clonidine and she finally dozed off. I'm hoping and praying she'll stay asleep and sleep off this nausea! Thank God our night nurse is here tonight! Please continue to keep our girl in your prayers!!!

Monday, July 22, 2013


For the most part, today was an awful day for my girl. Last night we could tell things were headed downhill. Reagan started getting fussy right around bedtime. She slept or at least was quiet for a while and then around 4am we could hear her kicking her bed, then a loud BANG! We both jumped up out of bed only to find her turned sideways in her bed, but otherwise OK. She had kicked her video monitor down to the floor! She started fussing once we messed with her, so I changed her diaper and then tried moving her to her chair. She wasn't thrilled to be in her chair either, but she eventually settled down (not sure if she ever went back to sleep). Then this morning when we went in to get her, she was surprisingly calm. Even a gave us a few laughs. Her nurse even put her AFOs on and all was good. Then she had OT. She did really well with that too, although she was a little sensitive when her therapist tried to feed her. We backed off and left it at that. Then, right around 11am, the crying started! We tried everything...different positions, different medicines...nothing was working. She'd doze off for 15min or so, but then she'd be back awake crying. Today was definitely one of those days you feel totally helpless as a parent! There's nothing we can do. I spoke with her palliative care doctor and even he is hesitant to make any more changes before we move. It just plain sucks. I want to help her...but HOW?? So frustrating! Tonight after the nurse left, she mellowed out a bit. The crying stopped. She was still very sensitive to being messed with (didn't like me giving her medicines or fixing her hair) and having quite a bit of chorea in her legs...but she was quiet (with the occasional fuss/tooth grinding). Poor thing. It's been a rotten day. I'm hoping and praying that she'll be able to get some much needed sleep tonight. Please say some extra prayers for my sweet miserable girl tonight. Prayers for a super quick recovery from this awful bad streak.

Brother feeling spunky after his nap!

Sunday, July 21, 2013

Good day, rough night?

Reagan had a good day today. She and her brother both woke around 6am this morning (not my idea of sleeping in)! She was good all day, but there were some definite signs of impending bad days...cold/clammy hands and feet, increased movement/chorea, and a touch of bad day smell. Right around bedtime she started to get a little agitated and then started crying when Mike tried to put her in bed! Her pm dose of clonidine seemed to make her ever more agitated, but a dose of Lortab helped her to settle down a bit (enough that we were able to lay her in bed). It's not looking good for tomorrow...please keep her in your prayers!!!

Saturday, July 20, 2013


It's been another good day for my girl today! She slept well last night and she and her brother were both up raring to go at 7am this morning! She's been such a sweet girl again today. Still pretty vocal, but she never got upset, so that's a good thing. I am a little concerned because she has two new bruises that have popped up on each wrist. We have NO clue where these bruises are coming from or why. I'm thinking about talking to her pediatrician about it next week and maybe taking her in for some bloodwork just to be on the safe side. She is SO sensitive though, so I'm hoping it's just that. She has a mosquito bite on her arm from last week when we went over to our neighbor's house while they were doing the inspection on our wouldn't believe how bad it looked yesterday! It started off as just a little bite, then it got redder, then swollen and huge, and finally today it looks like it's starting to look a little better. She has such sensitive skin! That's the same reason we have such a hard time getting her to tolerate her AFOs!! She's a princess! I'm hoping and praying for continued good days for her...she definitely deserves them!

No photos please!

Friday, July 19, 2013

Smiley girl, crazy boy

Reagan slept well last night and woke up a sweet, smiley girl again this morning. I'm happy to say that she had another good day today! She had PT this morning and she did great for that and then the rest of the day she just took it easy! She did doze off a couple of times today, but it was shortlived and she was awake most of the day. She had a few little chokey episodes, but she wasn't nauseous per say (although she did have the hiccups multiple times). She was also still fairly vocal today, which at times can sound like she's on the edge of freaking out (like tonight at bedtime), but thankfully no freakouts today! Well, not from Reagan anyway! Ryan is a mess! Constantly hitting his head on something! Standing up under tables, walking into chairs and walls, tripping over his own feet...this boy is an accident waiting to happen! Today he got his foot caught in the rails of his crib! Thankfully I had his video monitor on and I heard/saw him and immediately went in to free him! He does have a big knot on his ankle to show for it! I do have a funny video to share. This morning during PT, Ryan was walking around with his hand on his ear talking away! I guess someone has seen mommy make one too many phone calls! Reagan's PT was cracking up! 

Pause the blog music at the bottom of the page so you can hear Ryan "talking"!

Thursday, July 18, 2013


Reagan has been a sweetie today. She slept well last night but she did vocalize a few times (but never actually woke up). She woke smiling this morning and has been a good girl all day. She's been vocal, at times almost sounding a little on edge, but she held it together and had a good day today. She was still a little groggy again today. She slept for a bit this morning, then this afternoon she fell asleep in her stander after PT...she woke when we moved her (no we didn't leave her in there asleep), but then fell back to sleep for another couple hours! Such a darling girl. I'm hoping she continues to have good days...

Smiling in her sleep...

Wednesday, July 17, 2013

Better but sleepy

Today was finally a better day for my girl! She slept well last night and then woke up this morning smiling! She's been a sweet girl today. Still a tiny bit on edge at times, but overall, much more calm and content. Her hands and feet were cold and clammy at times, but completely normal the other half of the time! I'm still not really sure where she's headed right now but I sure hope it's toward good days! She didn't have any therapies today, which was good because we had to vacate the house for inspections. Yes, we already have an offer on our house even though we never put it on the market (we were waiting until we moved out, but an eager buyer bugged our real estate agent and we agreed to show it to them ahead of time and they made an offer)! We went over to our neighbor's house while they did the inpections and Reagan literally passed out the second we got there! She was OUT!! She slept in her wheelchair the entire time and then afterward I transferred her to her bed and she slept another couple hours! She woke back up around 7:15pm and was awake and smiling until 11pm or so when she dozed back off on her own. I'm hoping for another good night's sleep tonight for her and a good day tomorrow as well!

Tuesday, July 16, 2013

Rollercoaster day

Reagan didn't sleep again last night. She was sleepy, but just not able to sleep! Mike tried laying her in bed and immediately she started crying! He would pick her back up and calm her down and then try again, but each time he tried to put her in bed, she'd start crying! Finally we put her in her chair and got her in a comfortable position and she fell asleep. It didn't last long though. She was quiet but awake, most of the night. This morning she seemed a little improved. Less stressed, less tense, even an hint of a smile. Speech came and was working with her and all of a sudden she started crying! We took her AFOs off and she settled down and fell asleep in her speech therapist's arms! She was OUT. We seriously thought she was going to sleep the entire day! It didn't happen though. She woke up about 1.5hrs later...CRYING! Ugh. She cried for over an hour or so and then finally settled back down and fell asleep. When she woke up again, she woke up disoriented with knitted brows, we were afraid it was only a matter of time before she broke out into tears again. But she didn't. She made a complete turnaround and was smiling! She was smiley and sweet the rest of the night. It certainly has been a rollercoaster of a day! This girl...always keeping us guessing. We really have no clue what is going on with her right now. Is she headed back into bad days, is she coming out of idea! Please say some prayers for her and also for us...we need guidance in figuring out what to do for her. Do we switch her formula again? Do we keep on with increasing the volume of the 20kcal formula?? What do we do? We just want her to feel better! More good days, less bad days. So frustrating! Thank you everyone for your prayers...please keep them coming!

Monday, July 15, 2013

Prayers for my restless girl

Today was almost identical day to yesterday for Reagan. I'm not sure how much she slept last night. She was very restless again. Today she's also been extremely restless. She had a huge leaky diaper that ended up all over her, her nurse, her swing, and the carpet! Never a dull moment! Her hands and feet are still ice cold and clammy. Lots of chorea and nonstop extension again today. Not just kicking nonstop, but kicking so hard, we're all going to end up covered in bruises. She only had one therapy today...OT. It was a battle. It's a battle to do anything with her when she's like this! We tried to give her a nice relaxing bath tonight but even that turned into a wrestling match!  Tonight she was a little chokey...I was afraid she might throw up, but she never did. I really feel like she's still stuck in a "bad" cycle, she's just having less of the screaming crying days and more of the super stressed/restless/no sleep days. I guess anything is better than the nonstop screaming, but these days are very hard on her as well. It's just so difficult to watch her like this. And there's nothing that seems to help her. I gave her a dose of clonidine almost an hour ago and you can tell she wants to doze off, but her body is just not letting her. Please pray for my girl. She so desperately needs rest and relief from this tension!

Sunday, July 14, 2013

Out of control chorea

I think Reagan slept fairly well last night. She's been super restless during the day, so I'm not sure how well she's actually sleeping at night. Today wasn't a great day for her. If anything, she was worse today than yesterday. The chorea was out of control! Not just nonstop movement, but she was SO rigid and in constant extension, it was almost impossible to hold or pick her up. Her hands and feet were like ice. She was very zoned out...super stressed! Please say some prayers for her. I'm hoping for some relief for her tomorrow. It's been a rough couple days...

Saturday, July 13, 2013

Improved but still stressed

Reagan woke up last night fussing/crying. I gave her a dose of clonidine and Mike laid down with her and was eventually able to get her back to sleep. She woke up this morning tense, but not crying. That pretty much sums up her day today. Stressed...didn't want to be messed with...but otherwise OK. Lots of chorea. She was kicking around like crazy! She had the crazy laughs off and on throughout the day as well. I'm relieved that she wasn't crying today, but at the same time she was SO tense! I just want my happy girl back. Please continue to keep her in your prayers!

Friday, July 12, 2013

Really rough day

Reagan slept like a rock last night. Thank goodness because I was really worried about her waking up in the middle of the night with her being so nauseous. But she slept until morning and then woke up looked around a bit and then the crying started! Definitely a bad day. She cried most of the day today. All morning and all wasn't really until Daddy got home and held her on his lap, that she quieted down. She was still really tense and she didn't want me to mess with her at all (she'd start fussing when I tried to give her medicine), but she stopped crying. And then just before 10, she dozed off on her own. She was OUT. Mike even listened to her chest at one point because he was worried she had stopped breathing. She was...just sleeping soundly. We're not used to that. Please keep it in your prayers that she wakes up feeling much improved tomorrow. It was a really rough day for my girl.

Thursday, July 11, 2013

Good today, but nauseous tonight

Reagan had another restless night last night. She woke around 2am and then was very stressed and did a lot of moving/thrashing with her night nurse until 6am when she fell back asleep. She only slept another hour or so. She woke up very serious, but as soon as I came up to her, she gave me a smile and continued smiling the rest of the day! At times she seemed a little on edge, so we just tried to be careful with her (and keep her brother from screaming in her ear), but overall she had a pretty good day. Tonight she did get a little nauseous. This afternoon she was making a lot of mouth movements and looked a little gaggy to me, but it wasn't until tonight that I thought she would actually throw up. She didn't, but she sure looked like she was going to! Thankfully, she dozed off with a dose of clonidine and I'm praying she continues sleeping through the night! She definitely needs it. I'm a little frustrated, because this nausea would indicate that she's not doing well on the increased rate/volume of her formula. I also am a little afraid at where she is headed. The lack of sleep, the clammy hands and feet, the nausea...just doesn't look good. Please say some extra prayers for my girl tonight!

Wednesday, July 10, 2013

Sweet girl

Reagan was a little restless last night, although she did sleep when her night nurse held her. She woke up super sweet and smiley today. She was great for therapy...she had both speech and OT. Then this afternoon we went swimming. Tonight she was super kicky. I had her in her therapy room on a mat and she kept rolling over onto her tummy! Such a sweet girl! I'm loving these good days!

Tuesday, July 9, 2013

Great mood

I think Reagan slept well last night...I know I did! I think we were all happy to be back in our beds. Bear was definitely happy to have us back! Reagan was in a great mood today. Very smiley and sweet. She had speech and PT today. Of course, she did fall asleep just minutes before the speech therapist got here!! After PT, she spent over an hour in her stander without so much as a peep! Tonight she's really fighting falling alseep. She's snuggling with her night nurse but she's way more animated than she should be at this time of the night! I'm dozing as I write this, so maybe it's time for me to wrap it up!! Goodnight!

Monday, July 8, 2013

Back home

Reagan slept fairly well last night. I know she was awake on and off, but overall I think she slept. She woke sweet and smiley again this morning! We had a potential nurse come and interview. I'm not positive if she is going to be a good fit or not. She's newly graduated from nursing school, so you just never know. I just don't want her working with us a week or two and then deciding that home health nursing is not for her! We'll have to see. Reagan fell asleep on my lap while the nurse was there (around 10:30am) and then kept sleeping until we left Austin a little after 3pm. She was awake the whole drive and her brother only slept a tiny bit (and was a turkey the rest of the time)! It was good to get home, but bittersweet knowing that this soon won't be home. I love this house and I love our neighbors and although I know everything will work out in Austin, it's still sad to think about leaving. Time for bed! Praying for more good days for my sweet girl this week! (We've started the slow increase of the volume of her formula...right now we're at 59ml/hr * 20hrs/day= 1180mls total! Praying this goes smoothly as well! We need to keep our girl happy while putting some pounds back on her!)

Sunday, July 7, 2013

Better/sleepy day

Reagan finally slept a little better last night! She didn't wake up crying, and even though she was awake here and there, we still think she slept most of the night! She was a sweet smiley girl today. We went over and visited with another mito family (they have a precious little girl who has Leigh's). It's always so nice to talk with other people who "get it"! They totally understand what we go through on a daily basis! It was a nice visit and we look forward to hanging out more with them after we move! Reagan fell asleep while we were there and then continued to sleep the rest of the day (and woke up around 9:30pm)!!! I'm hoping for another good night's sleep for everyone tonight and that both kiddos behave themselves on the trip back tomorrow !!!

Saturday, July 6, 2013

Slowly getting there

Reagan had another rotten night last night! Lots of crying, restlessness, and little if any sleep! She was still very much on edge when we got up with her this morning. She had a few crying spells that really seemed like she might be heading back into full on bad days. And then she turned a corner. She was quiet and even a little laughy. I gave her a bath this afternoon in my stepmother's big tub and she really seemed to enjoy it! But shortly thereafter, she had another crying spell! I don't know if it was tummy pains or what but she was pretty good the rest of the day (even with her brother throwing tantrums nonstop)! She was still a bit nauseous today, although I don't recall any actual throw ups. Tonight right as she was dozing off, she started freaking out a little. I picked her up and held her and she eventually dozed off. Please keep her in your prayers for some much needed sleep and better days to come!!

Friday, July 5, 2013

Still not good

I'm exhausted so this will have to be quick. Reagan had a rough night last night! She is not sleeping well at all...kept waking up crying and thrashing! So needless to say, no one is feeling rested today. She was more agreeable in general today, but she was also nauseous (and thew up a few times). I just don't know what to do for her! She's not doing well. We just can't seem to get her back to baseline! Maybe we were hoping she'd rebound more quickly than she's capable, but we just want some good days for our girl!! Please keep her in your prayers!!!

Thursday, July 4, 2013


We made it to Austin! Ryan has been a holy terror today and Reagan has been hanging in there. She would get agitated by her brother's craziness or by me (today was an I hate mommy day), but she never went crazy. Well, not until we were trying to go see fireworks! That was an epic fail! Ryan was pitching a fit and screaming in her ear...then they were both screaming! Needless to say, we never made it and had to just head back to my dad's house! Oh well! Ryan went right to sleep tonight but Reagan was fighting it! She was asleep in her chair but woke up the second we tried to put her in bed. And then she seriously flipped out! Not sure what that was about?!? She seemed to settle down after a dose of clonidine...but she's still restless. Please keep my girl in your prayers...things are still not right with her. She's got a new huge nasty looking bruise on her knee, she's pale, so skinny... She's just "off". I'm worried about my girl...we definitely need some prayers for her!

Wednesday, July 3, 2013

Not too bad

Reagan woke up around 3am crying! Her night nurse got her to settle down and then next thing you know, she's laughing! She continued with the laughs most of the day. At times you could tell she was right on the edge, and she wasn't too happy about diaper changes, but overall not a bad day (especially considering her day yesterday). I'm not sure how much it has to do with decreasing the calories of her formula, but her stool is already more formed and less watery, so she definitely seems to be absorbing it better. We're waiting to increase her rate until she gets back to baseline. Not quite there yet, but close. I'm hoping for a good day tomorrow, as we are going to be on the road! I'm still not totally packed, but hopefully I can get it done in the morning (you know, in my spare time, when I'm not giving medicine or tending to Ryan)! Thank you for keeping our sweet girl in your prayers!

Tuesday, July 2, 2013

Bad day for my girl

So, no surprise, they never found a nurse for us today. And to top it off, Reagan woke up crying this morning! I saw that coming for sure...days of clammy hands and feet, not sleeping as well, and then the craziness last night as she was falling asleep...not good, not good. Even though she was clearly miserable, it was a lot more fussing/moaning than screaming/crying (although she did both). She also took some good naps today, allowing me to get a few things done. I had a long conversation with her palliative care doctor this morning and he's in agreement that we've got to try to do something to get her back to where she was a couple months ago. Adding the Duocal has been yet another failure, she's reacting to it just as she did to increasing the concentration of the PurAmino. Still having spells of extreme nausea, still having bad days (and having them more frequently/severely). Our next course of action is to try increasing her volume while keeping the formula concentration at the 20kcal/oz. Right now she's at a rate of 55ml/hr for 20hrs a day (that's 1100mls), we're going to try gradually increasing her rate until she gets somewhere closer to 75ml/hr (1500ml/day). If this doesn't work, our next step is to try switching her over to Ketocal, the formula used in the Ketogenic diet (with the idea that if her body is having a hard time digesting carbs, maybe it will do better with a higher ratio of fats). We'll see. I hope increasing the volume does the trick. Please keep this process (and my girl) in your prayers! Oh to be able to our sweet girl more good days!

Monday, July 1, 2013


Let me just start off by saying THANK YOU. Thank you for all of your sweet comments! To those of you who I know and those of you I don't know...your prayers and support is appreciated more than you'll ever know! On a completely different note...I'm a little peeved right now. Let's just say that our nursing agency is on my !@#$ list! I'm so frustrated with them! Our new nurse (who we love by the way) is on vacation this week. She gave the agency 3 weeks notice. We were on them constantly about it, but it took them til Thursday of last week to get someone out here to orient. That lady was supposed to work Mon-Wed this week. She seemed nice enough. Then today rolls around and NO NURSE! I call the agency and can't even get through for 45min or so. Finally when I speak to someone, they tell me that she just called in (her baby sitter didn't show). Ugh. I was NOT happy! My mom flew in here yesterday so that we could work nonstop Sun and Mon to try to get things done (packing, cleaning, staging). Reagan was a good girl today, so it wasn't a huge issue, but I'm worried about tomorrow. She's showing signs of impending bad days. The clammy hands and feet, restlessness, and tonight as she dozed off she woke a couple of times in a sort of crazy frenzy! I'm definitely worried. But late this afternoon they did call me and say they had someone to fill in on Tues/Wed. OK...good. Maybe I'll be able to get something done. Then tonight at 11pm...they call. The nurse called in!! Oh my gosh...I feel like my head is going to EXPLODE! So frustrating!!! What kind of business are these people running?!?!? And what am I going to do?!?! Please keep us in your prayers...I'm hoping Reagan will surprise me tomorrow!