Monday, September 30, 2013

Adios Mexico!

I just typed this entire post only to have it disappear as I was adding photos! I'm SO annoyed! We were up bright and early today, lots of packing to finish up! Reagan was the only one to sleep in, of course she was tired, she was up last night laughing and coughing/gagging! We weren't sure how she was going to wake up, or if the nausea was going to be gone, but she surprised us and was great! We got up the airport with time to spare, so we all ordered some "American" food (Johnny Rockets & California Pizza Kitchen)! Everything went well with the flight except the fact that both kiddos decided to poop mid flight! Not much we could do about that, except hold our breath! Once we landed, we were welcomed by the surprise that Mike parked in the wrong lot and was charged $22/day for parking! Ugh. Not good. On our way home, about 4min before we got home, Ryan started projectile vomiting the fries he ate for lunch! Poor guy! So much throw up, for such a small guy! I had to strip him down naked the second we pulled in the driveway! Reagan was great all day. She was having a hard time settling down to go to sleep, so I gave her a dose of clonidine. It did the opposite and made her completely crazy! We had to give her Lortab to calm her down, but she finally fell asleep! It's good to be home! Only our 4th night in our new house!













Sunday, September 29, 2013

Last day in Mexico

Reagan slept well last night and woke up a sweet girl today. She was showing signs of nausea...lots of tongue action, spitty, a cough here and there...and then when we laid her down to change her diaper...BIG throw up! This continued all day long. You never knew when it was going to hit! She wasn't really gaggy or retchy, but she'd cough and then have a huge throw up! Poor girl! She was so good too. Not the best last day in Mexico! We just kept her upright in her chair most of the day (and night as well)!!

Saturday, September 28, 2013

Wedding day

Today is the big day! My sister's wedding. Reagan slept well but woke up still very stressed. She didn't want to be messed with so we really had no idea if she would even make it to the wedding tonight at 6pm. Around 2pm we decided to give her hair a sponge bath because she had been sweating it wet for days. She was NOT a fan! She fought us and fussed the whole time! Afterward she seemed to settle down and feel a little better. And she just got better after that! We took her over to my sister's villa three houses down (where they were having the wedding on the beach) and she fell asleep! I walked down the isle with Ryan and then Mike carried Reagan down the isle (still asleep). She woke a little startled when the wind hit her, but calmed down and was half awake half asleep through the ceremony. Ryan, on the other hand, freaked out right as they started talking and our nurse had to take him away!! It was a BEAUTIFUL wedding!! Truly the most beautiful wedding I've ever attended! (Of course, I would expect no less since my sister and all of her friends work in the hotel industry and put on weddings/events on a daily basis!) Ryan finally chilled out and was hamming it up for everyone and charming all of the ladies! Both kids stayed til right around 10pm (after they cut the cake) and then the nurse came back to the house with them (and put them both to bed)! It was a great night and Reagan pulled it off last minute and was a precious flower girl!! (I'll post more pictures later...all of ours were taken on our real camera...so the only easy cell phone pics I have are from our nurse's cell!!)



Friday, September 27, 2013

Late night

Reagan woke up this morning at 4:30am crying! She settled back down with some Lortab, but that only lasted until about 6:30am. The bad days are definitely upon us. We were hoping she'd hold out, but truth be told, we knew they were coming! Thankfully, she did settle down a bit as the day went on and she also slept quite a bit. But when she was awake, she was very fussy. This afternoon she was awake for periods of time without crying but she did NOT want to be messed with!! Tonight was my sister's rehearsal dinner, so we put Ryan down to sleep and the nurse stayed home with Reagan. I was very nervous because the restaurant was quite a drive away on the more primitive side of Tulum (where many hotels don't even have electricity), but thankfully the restaurant had wifi and I was able to make contact with the nurse to check on Reagan! It was a beautiful dinner and Reagan only woke up once while we were gone, so it all worked out well. Tomorrow (Saturday) is the wedding! I'm just hoping Reagan can pull through with a miracle recovery so she can still be in the wedding!! Thank you for keeping my sweet girl in your prayers!!

Thursday, September 26, 2013

Hot

Let me preface by saying that, yes, I'm a wimp...and a complainer (Mike would agree)! I know it's beautiful here...but I need my air conditioning! I don't do well in Mexico. I've been twice before and never liked it. Reagan actually slept well last night, but we're all feeling a little wiped out! Our house is hot (with only small A/C units in the bedrooms), all of the living spaces are hot and humid (one of the "perks" to staying right off the water), everywhere you go is hot! Today we went out into the town to walk around the shops...we must have sweat off 5lbs each!! Definitely not ideal for a child with temperature regulation issues! And it's just SO humid! My hair is such a mess! Even Reagan's hair is curling up a bit! There are bugs everywhere! Tiny little ants have taken over! We find them everywhere! On the kitchen counter, in our food, in the diaper bag, on our faces...ugh! Reagan is still hanging in there! She had FOUR poos today, so her tummy has to feel better after that!! No clue how much longer this can last but the wedding is Saturday, so I'm hoping she can hold it together! Please keep her in your prayers!!

Wednesday, September 25, 2013

Busy day, good girl

Reagan slept well enough last night. It was a restless sleep, but nearly every time we got up to check on her (we slept in her room last night to give the nurse a break), her eyes were closed! Speaking of...I'm falling asleep as I type this, so this has got to be quick! It's been an exhausting day! We all went swimming, then we went to see the Mayan ruins in Tulum and then we had an awesome Mexican dinner prepared for us by the caretaker of our house! Reagan held it together today! She was a little sensitive to noises/talking, but otherwise ok. It was SO hot and humid but with a cooling pack behind her back, she was probably more comfortable than the rest of us!!









Tuesday, September 24, 2013

Long night

It was a long night last night...for everyone! The nurse slept upstairs with Reagan. Between Reagan and the sqeaky fan, I think she got more than she bargained for! Reagan tossed and turned and moaned all night! We had a monitor on her, so we heard every bit of it! Then this morning she settled down a bit, but don't worry, it didn't last long! She was so tense, but surprisingly this was a day she  preferred to be held. Tonight she escalated and the fussing started! We had to leave Mike at home with her just so we could go eat dinner. It's one of those times it just really sucks that she's not feeling well. The only silver lining is that if she gets over these bad/off dats now, she should be good by the wedding on Saturday! Please keep her in your prayers!! 











Monday, September 23, 2013

Mexico bound

Today was travel day! We weren't sure how Reagan was going to wake up after her sleepy day yesterday, but she hung in there and was a good girl for us! I have to say, traveling with kids is a stressful experience, but traveling with a special needs kid (and all of her equipment, meds, formula, & diapers) is even more difficult! And going through security...don't even get me started! Both kiddos soaked through their first change of clothes before we ever even got on the plane!! The nurse that came with us (Reagan's pediatrician's nurse from Houston) barely made the flight because her flight from Houston left late! Ryan behaved himself...for the most part...thank God for iPads! Reagan was good too, but she was not a fan of the loud talking from the flight crew (we had to put her noise canceling headphones on)!! We made it here safely, without any major drama! It's beautiful but oh so humid (and windy)!!! Now I remember why we moved to Austin...to get away from the humidity! Yuck!















Sunday, September 22, 2013

Even quicker update

Reagan slept last night and then just kept on sleeping today! All day! She woke up once this morning and once tonight, but both times only because we were changing her diaper! And both times she was only awake for a short while. She's been super squirmy today...awake and asleep! I found her this morning completely off her mattress (which is laying on the floor until we get her bed put together) and turned 90 degrees...and still asleep! She's a silly girl. When she did wake up, she was just OK. She wasn't fussy at all, but she was very tense and super crunchy (bending at the waist and hands tangled up in her hair)! I'm hoping tomorrow she'll wake well rested ready for our day of travel to Tulum Mexico for my sister's wedding!! It's going to be an experience, that's for sure! Please keep us in your prayers!!

Saturday, September 21, 2013

Quick update

This is going to have to be quick! It's been a long day and it's time for bed!! This morning was the walkathon. The weather cleared up and it was great (albeit a little windy)! Reagan couldn't have been better! She was all smiles the whole time! Then this afternoon we moved (almost all) the rest of our stuff over to our new house! Talk about exhausting!! Reagan had the crazy laughs tonight but with an extra weird twist. She would squint her eyes and then laugh...I don't know how to explain it (I took a video). We didn't like the looks of it...so please keep it in your prayers that it's nothing! She was also being extra sensitive when we put her to bed and the fan blew on her...she immediately started acting nauseous, even though she was asleep. Very strange. We finally got her to sleep with the help of clonidine so hopefully she'll sleep it off and wake up more normal tomorrow! One more day til Mexico!!







Friday, September 20, 2013

Rainy day, sweet girl

Reagan slept well last night...after the Lortab helped reverse the effects of the clonidine! Damn medicine! You have to take something and then have to take something else to reverse the side effect of the first thing! She slept well though and so did her brother. She was still a bit snotty/coughy today, but she was all smiles the whole day! Laughing when I sucked her nose! Such a sweetie! She did really well for speech and OT. She also had TWO super liquidy diapers! Mike mentioned tonight how slimey it was and that's when he figured it out...it's the antibiotic!! First of all, even on laxatives, my girl is not this regular. And then the consistency...well, there's no need to elaborate! It was a SUPER rainy day today (which is crazy for Austin)! We were supposed to attempt to move our essentials over to our house today, so we could sleep there tonight, but that didn't happen. Hopefully tomorrow (after the walkathon), we can get everything moved! We only have a couple more days til we go to Mexico! Please keep it in your prayers that everyone travels well and that we have a good, safe trip! We ALL need a relaxing vacation!!

Thursday, September 19, 2013

Better but still coughy

Reagan was up a lot last night due to the nausea. We did end up having to transfer her over to her chair because laying on her back was just making it worse. The first thing I did when I woke up this morning was call the radiology center and schedule her abdominal/renal ultrasound. Her new GI doc wants her to have it done on a day when she is nauseous, so thankfully I was able to get an appt for this afternoon. Reagan slept in this morning and then woke around 10am and the nausea was gone! That's a good thing for her...but not so good for the ultrasound. We canceled it, but still ran her up to the hospital for some blood work (for the EPI-743 study). We made it home just in time for Speech. I love her new speech therapist. And her OT. They have both been really great thinking outside of the box and trying to come up with toys/apps that are specific to Reagan! Today speech was using an app on the iPad...Reagan would touch a picture of "bubbles" and it would say "bubbles" and then her therapist would blow bubbles! Ryan was loving this! And Reagan was really watching the bubbles and purposefully touching the screen! She did a really great job with all of her therapies today! Then this afternoon, right before her nurse left, she had a huge liquidy diaper (must have been the pedialyte). It just kept coming and coming! Poor girl, she had to feel better after that. She was still very coughy/chokey today but not really nauseous. Tonight she was having issues with her sinus drainage, but it was better after a little snot sucking! It was after 11pm and she was tired, but still not falling asleep so I gave her a dose of clonidine. And the clonidine bit us in the butt! Instead of calming her and making her sleepy, it did the exact opposite! It wound her up and made her crazy/fussy!!! We've had this issue in the past, but you just never know when it's going to happen! I had to give her a dose of Lorab to settle her down and thankfully that helped her to finally doze off! Prayers for some good sleep for my girl tonight and many good days to follow!!



Wednesday, September 18, 2013

Coughs and throw ups

Today has definitely been a better day for my girl. That being said, she's still not out of the woods. She slept in her bed last night and woke up quiet. That was definite improvement. There was no crying today at all, but she did start back up with the coughing. Lots of it. Even though her pediatrician had already called in some amoxicillin, we decided to take both her and her brother in to get checked out. Brother had a meltdown in the office right before the doctor came in. Turns out, he's got a pretty major ear infection in his right ear (I guess that's why he kept waking up last night)! So looks like both kiddos are going to be taking amoxicillin! The doctor warned that Ryan may lose his appetite, but I told him to take a look at Ryan...we've never worried about him losing his appetitie! He was a little concerned that Reagan's lungs sound a little gunky (could be the beginning of bronchitis), but hopefully the amoxicillin will take care of that too! We headed home and Mr Crankypants took a little nap in the car. It was shortlived and he woke up super fussy again! We got home and I took him into the house and then ran out to help the nurse get Reagan. By the time I got back in (only a minute or so later), Ryan had thrown up in 3 different spots on the floor! Poor thing! He looked SO sick! I checked his temp and it was 99.7 in the healthy ear (he wouldn't let me touch the infected one). I managed to get his antibiotic into him and then get him to sleep. He took about an hour nap and then woke hysterical again! I picked him up and carried him into the living room...even cat in the hat wasn't doing the trick. He finally calmed down and I put him in his chair and he sat there. Next thing I know, I hear heavy breathing, he's totally dozed off again sitting in the chair!! Poor guy! And guess what...NO appetite! He didn't have much more than juice the rest of the night! Reagan started getting nauseous right around 4pm and had several huge throw ups. She was sweating her hair wet and exhausting herself with all the vomiting! Poor thing! She finally dozed off in her chair and she's in bed right now (although I'm a little nervous with her laying down, so she may end up in her chair). As of now, I'm planning on putting her on pedialyte over night and taking her in tomorrow for that abdominal ultrasound if they can fit us in (and for her Stanford labs).  Please keep her (and her brother) in your prayers.


Tuesday, September 17, 2013

More of the same

We didn't dare try to move Reagan last night. She fell asleep in her chair with the help of Lortab and slept til 4am (of course, what other time would she wake up)! I gave her a dose of clonidine and she slept til 8am. Today was very similar to yesterday...in a bad way. When Reagan was awake...she was crying. Miserable, unrelenting cries. Thankfully, she slept off and on all day, so she did get a little relief. Of course, most of the time the only reason she was sleeping was because she was "drugged"! My poor girl, you can just see she's at war with her own body! Tonight at least she's been awake for periods of time without crying. She's still very zoned out, and hates being messed with, but she's not crying nonstop so that is improvement. Unfortunately, the coughing has come back with the silence. She still sounds very gunky in her throat. Her pediatrician called in an antibiotic so we started that today, but I think I'll probably take her in tomorrow just so he can check her out in person. Her nurse doesn't think it's in her chest, so hopefully she's right. The chorea is back full force. She's still full of tone (and extending a lot), but she's also kicking nonstop and pulling her hair. It's definitely one of those days that you feel totally defeated! All of these new doctors vowing to figure this out and yet here we sit, totally helpless, unable to do a thing to give her any relief! The same story, different town! So frustrating! I'm just hoping that time will do the trick and that my girl will be back on track by tomorrow! Prayers for sleep and a dramatic turnaround by tomorrow!!

Monday, September 16, 2013

So miserable...happy mitochondrial disease awareness week!

I wish I were a fashion blogger. I went to highschool with a girl that now does that for a living! Buys cute clothes (or has them given to her) and then has her husband take loads of pictures of her wearing them. Or a mommy blogger, who writes about the cute/crazy things her kids decided to do that day! Going shopping, lunches with friends, playdates, & girl's weekends...sounds pretty good to me! But no. I'm just a mom who blogs to keep a journal of her daughter's daily struggles with mitochondrial disease. Not very glamorous. It's mitochondrial disease awareness week this week and we're more than aware of the toll this disease takes on not just our daughter's body but every aspect of our lives!! Several mito mom bloggers have great posts you can read in honor of mitochondrial disease awareness week...here...here...here...not feeling quite up to it today, but they all do a great job! We do have a small team participating in the Central Texas Energy for Life Walkathon this weekend, so if anyone would like to join us or would like to donate to team Rallying for Reagan, we would appreciate your support! Reagan is not doing well. She woke up at 3am crying! A dose of Lortab helped her to settle down and go back to sleep til 6. I got up with her and have been up since. She'll doze off for a bit and then startle awake and cry nonstop. She's crying every waking moment. She's SO tense. Her body couldn't be any more rigid. When I was holding her this morning, she was extending so much, it was like trying to cradle a board of wood in your arms! She's beyond miserable! It's only been one week since her last bad days, so things are definitely not getting any better with this new formula. The only silver lining I can think of is that we should probably be OK for our travel day next Monday (but again, there are no guarantees on that). We travel on Monday and then my sister's wedding is on Saturday, so if she's going to have bad days...it would be in everyone's best interest for them to occur mid week next week. Best case scenario would be NO bad days...but unfortunately that's not usually how it plays out! My poor girl. She's so miserable. Lortab helps but only for an hour or so and then she's crying again! Not good. Not good. I'm going to put in another call to palliative care. They were out of the office last week, so I really need to pin them down this week before we leave. Oh the glamorous life I live. Please pray for my sweet girl.



Just found these pics on my camera! We miss you Bear dog!

Sunday, September 15, 2013

Drainage and nausea

Reagan was a little restless again last night. She was wide awake and kicking around at 7am this morning. Turns out, she had good reason! When we brought her downstairs, we caught a whiff as to why she was having trouble sleeping! Poor girl! No telling how long she had been laying in that! She was a sweetie though. She's been really good again today. I was a little worried, because Mike had to work this morning and she was showing a few signs yesterday, but she pulled through. She's still having troubles with her sinuses. More snot sucking today! She did have a throw up this morning, but I think that was mainly just sinus drainage. Then this afternoon, she started getting spitty (enough to need a big), and tonight she's acting very nauseous. Ugh. When are we going to figure this out?!?! So far this new formula doesn't seem to be doing anything for her bad days or nausea...but it does seem to be packing on the pounds (of course, anything with more calories would have done that). It looks like we still may be heading in the direction of the ketogenic diet, sometime after we return from Mexico. We close on our house tomorrow! We're thinking we'll try to move this week, but it is a little stressful since we leave for Mexico one week from tomorrow! Lots of big things going on! Prayers for a smooth trip and smooth travel (and good weather)!




Reagan is wearing a scabib! It's a scarf/bib! You can find them on Etsy. She made these bigger, since her usual ones are for babies! Reagan likes to hold it...like chewelry!

Saturday, September 14, 2013

Good girl

Reagan was a bit restless again...she was awake at 4:30 (AGAIN), and while Lortab helped her to fall back asleep, it didn't last long! She was awake and kicking at 7am when I left. I decided to make the trek up to Dallas for my sister's bridal shower! I surprised both my sister and my mother, as they thought I wasn't going to make it (well that's what I told them). Honestly, I wasn't sure if I'd make it, because we never know how Reagan is going to be doing in advance. But we had a nurse today and Reagan was happy when she woke up, so I felt comfortable leaving (and Mike was here with Ryan). It was a long drive, but I'm glad I made it! When I got home, everyone was doing well (although Ryan did get up on some boxes and put a whole tub of stuff in the fish tank)! Reagan was good all day. Still having some temp control issues (sweaty back), and she seems a little twitchy/shaky to me (maybe from the allergy med)? Also when we were giving her a bath, I wiped her nose with a wet wash cloth and it startled her...and she did that weird fixed looking down thing...where it took a bit for her to snap out of it. Not a fan of that. She does still have a bit of a cough and a very runny nose! So far the Allegra doesn't seem to be working. Hopefully this will all clear up and we'll have a healthy girl a week from now when we leave for Mexico! Thank you for keeping her in your prayers!!

Friday, September 13, 2013

Busy Friday

Reagan slept well last night...I think. I slept well, so I'm assuming she slept well too. I think she was restless though because she was completely awake this morning at 7am and laying sideways in her bed...so she had probably been up kicking around for a while. She was smiley and sweet though, so that's good. She's been really great today. More relaxed than yesterday (although a bit clammy). Less in her hair and more attentive. She's been making great eye contact and seems to be paying attention to everything. She had FOUR therapies today! PT this morning, speech, "school", and then OT this afternoon! Busy day! And she handled it all like a pro! Very good. She's been kicky while in her chair but relaxes and snuggles when being held! Less vocal today, but that's probably a good thing. The cough still gets her every now and then but maybe a little less than yesterday. She'll go into these fits, and she has a hard time stopping. I definitely think it's sinus related because when I suck out her nose, it seems to help (I think she just doesn't know what to do with it dripping down the back of her throat). Tonight she was having some major temperature regulation issues! Hot and sweating up a storm. She was also being a bit sensitive and twitchy. Praying she can hang on and continue with good days! Really missing my dog today. Ryan has been running around playing with his collar all day (he likes the jingle of his tags). Then tonight I was making salads and all I could think about is how Bear would have loved to eat the crunchy pieces of lettuce! He would have been right there, asking for them! So sad.

Thursday, September 12, 2013

Tickly cough

Reagan slept well last night...as far as I can remember. She woke up spunky today. Very vocal (at times sounding almost on edge), but sweet and smiley. Hands in the hair or mouth at all times! Both today and yesterday she was really leaning to the left...almost hanging out of her chair! It made it a little difficult for therapy, but we worked with it. She had speech (from the school system), an hour of homebound "school", and OT today. Very busy! She seemed a little groggy at times today, but never dozed off for more than a few minutes in between therapies. She was still very coughy at times...it's like she'd get a tickle in her throat and just not be able to stop coughing! I did find some Allegra today. I gave her a dose tonight...hopefully that will work for her! Both her and brother are still pretty snotty! I used the nose sucker on her this afternoon. We have the battery powered one...I highly recommend it! This girl definitely needs some relief. Tonight she was getting even more vocal (and sounding agitated), but thankfully a dose of clonidine helped her settle down and go to sleep! Prayers for continued good days for my girl!

Wednesday, September 11, 2013

Busy sleepy coughy day

Reagan slept OK last night. She did wake up around 4-4:30 (there's definitely a trend here) and she was very restless. Daddy tried to get her back to sleep, but she wasn't budging. She had a wet diaper, so I changed her, and eventually she did fall back to sleep. She slept in a little this morning, but she was up and at em by 9am. We headed up to the hospital at 10:45 to be there by 11:30. I didn't realize her actual appt time wasn't until 1pm! So we spent a good deal of time just sitting in preop. It was a bit challenging because it was interfering with Ryan's nap time, but child life brought by some toys and a mat for him to play on and he was good to go. Reagan dozed off in her chair right before they came to get her and then stayed asleep for the entire procedure (without sedation)!! The test didn't yield anything surprising. Yes, she has spasms in her colon (where the pressures go way above normal), but in general she has normal pressures. The doctor is going to go back over the data in detail just to make sure he wasn't missing anything. The plan is to just continue with our current regimen of stool softeners (milk of magnesia) and then probably add lactulose to the mix when needed. We'll probably also try to do a sitzmarks test with her as well, just to see how much of it is poor motility and where exactly it's slowing down. Reagan and Ryan both slept the whole way back! After getting back, she had speech and did great with that! Then later her nurse was holding her in the poo poo position and we ended up with a huge liquidy diaper! (And the doctor was trying to say there was nothing in there!!) She took another nap after that and then woke up just as the nurse was leaving. She was very kicky and coughy (I forgot to mention...she's been coughing like crazy again)! The pediatrician suggested giving her allegra (he thinks it's allergies), but they were out of allegra at the store, so we tried some Claritin. Hopefully it will help! Tonight she dozed off with the help of clonidine. I sure hope she can get some decent sleep tonight! (No more 4am wake up calls please!)

Tuesday, September 10, 2013

Sleepy and coughy

Reagan fell asleep last night (with the help of clonidine), but she kept waking back up...it was a very restless sleep. Thankfully when she woke up, the nausea appeared to be gone. She'd cough, but as far as I know, she never threw up again. Around 4am I heard her kicking around like crazy in her bed, I got up and gave her a dose of Lortab and that seemed to settle her down and she fell back to sleep. She actually continued sleeping until noon...we woke her when we went in to change her diaper! She woke up happy, although she still had a pesky cough. It's a little less wet sounding today, but maybe that's because she was sleeping with her mouth open! No real nausea to speak of but she did cough up a bit of gunk at one point, but since that was only once I don't think it was actually nausea related. She dozed back off around 3:30pm...just in time to miss OT. And then slept the rest of the night! I picked her up and held her for a while, but she never even opened her eyes! She'd stretch and move around as if she were going to wake up, but no! Sleepy girl! Tomorrow we've actually got a different GI test scheduled. Anal manometry...sounds like a fun one! Wish us luck!

Monday, September 9, 2013

Sneaky nausea

Reagan's pump was going off last night around 2am and then she woke up. She had a case of the laughs, so Mike got up with her and tried to settle her back down. Settling down was not in the cards and around 4am I heard something that sounded like fussing! I jumped up and found her very restless, kicking and squirming around nonstop, and beginning to sound very agitated. I gave her a dose of Lortab and she settled down shortly thereafter and fell back to sleep. It was at this point, I decided we were not going to attempt the upper GI with small bowel follow through. It's just too long of a test and if she's not 100%, she's not going to tolerate it. I'm glad I made that decision, because while she woke up in better spirits, she was still way too active for that test. She had PT this morning which really seemed to relax her (or maybe she was just sleepy from being up so much last night). Then she had speech with her new speech therapist. Everything seemed to be going well. Then this afternoon she threw up. It came out of no where (like yesterday), she had a big cough and then up came a bunch of gunk! We thought, she's probably just coughing up some mucous, since she and her brother have both been pretty snotty and coughy! But then later, she did it again. And then again. She didn't appear to be nauseous, but the throw ups just kept coming! Unfortunately, I really missed my opportunity to go get her abdominal ultrasound during a bout of nausea (like her GI doctor requested). By the time we realized it was real nausea and not just something she was doing because of allergies or a cold...it was too late. The nausea continued and actually got worse as the night went on. She'd have several big throw ups in a row, it was coming out of her nose, it was relentless. I've already given her a dose of clonidine (hoping to get her to sleep and stop the nausea), but she's fighting it. She keeps getting bursts of energy...I'm hoping she can settle down and stay asleep! Please keep her in your prayers!

Sunday, September 8, 2013

Photoshoot...kinda done

Reagan had a good day today. She slept well last night and then woke up a happy, smiley girl today. Big eyes and smiley...we couldn't have asked for a better girl to do a photo shoot! We rescheduled our photoshoot with a photographer here in Austin and had to reschedule a couple of times because we hadn't moved yet. And this time I still wasn't sure if it was going to happen because Reagan had bad days Thursday & Friday! But she turned it around and was better Saturday and even better today! She was still a little kicky and coughy (she did have one isolated throw up but I think it's because she was lying down and the sinus drainage got to her)! We were very unorganized in our session and didn't really know where we were shooting until last minute (I guess probably because we didn't really know if it was even going to happen)! We ended up shooting in front of the entrance to our new neighborhood (apparently a lot of people take pictures there)! Reagan was a complete angel, her brother was quite the opposite! Ryan was kicking and screaming and crying! Running away from us and toward the road. You name it, he was doing it! Hopefully there's ONE good shot of us as a family, but I seriously doubt it! I know there will be a good shot of Reagan! She was such a little poser! What a sweet girl! (Below are some pics that grandma snapped with her iPhone). Busy day tomorrow as well...she's scheduled for an upper GI with small bowel follow though. Not sure if it will happen though because no one ever followed up with us about her being unable to be without food/water for the required amount of time! We'll see! (Still missing my dog...)



Saturday, September 7, 2013

Getting better

Reagan actually slept well last night! She woke up when we initially transferred her to bed, but her Daddy was able to get her back to sleep and she slept the whole night through. When she woke up this morning, she was slightly agitated, but once we changed her and got her into her chair...she was content. Overall, it turned out to be a really good day for her. She had THREE dirty diapers, all very loose (the first of which leaked out all over the nurse...that's what you call hazing)! She even turned on the laughs this afternoon! She was a little sensitive to us talking, but overall, she was very good today! Still a coughing, but it does sound like it's breaking up. Ryan got to go to the pool with his Aunt Jennifer and cousin Brooke! He was a handful (big surprise)...he kept wanting to go down the kiddie slide, but afterward he wanted to crawl back up it (when other kids were trying to come down)! Needless to say, there were quite a few tantrums! He's definitely already hit the terrible twos! I'm hoping since he's hitting them early, that means he'll outgrow them early too?!?! Wishful thinking? Tonight we even had a quick visit with my sister and her fiancé! Reagan was all smiles (until all the talking started to irritate her) and Ryan was pretending to be shy! It was a good day and it did take my mind off my poor Bear for a while. Although every time I walk in the room where his crate was or see his bowls or even when Ryan drops a piece of food on the floor (which Bear would normally eat right up)...I get sad. Seeing people walking by with their dogs makes me even sadder. Oh we're going to miss you Bear!!