Wednesday, April 30, 2014

Darling girl

Reagan was still a little restless last night, but I think she slept OK. She's been sweet and smiley again today. Very laid back and darling (never even flinched when her brother was screaming near her)! She had OT, speech, and school today and did well with everything. Every now and then she'd look like she wanted to doze off, but she never did. Tonight she was so sweet and snuggly...I thought she was going to fall asleep right on her Daddy! I held her for a while and she kept dozing off and then she'd startle back awake and have big wide eyes again. She did this for a while...she just couldn't seem to stay asleep. Finally she was a little more still and Mike was able to get her to bed asleep! Praying for a restful night's sleep for my girl!

Tuesday, April 29, 2014

All good

Reagan slept OK last night. She was a little restless and she was up pretty early this morning, but otherwise fine. She has been SO sweet and smiley today! This morning she had vision therapy, OT, and PT and did great with everything! Then it was her turn to go see the ENT. Her last hearing text was in 2008, so yeah, it's about time! The doctor looked in her ears and needed to clear out some of the wax so he could see everything clearly (she gets a lot of wax in her ears...I had the same problem as a kid). Anyway, she was SO good (if only Ryan could be half as good)! We had to put her on a table and he used a microscope to see what he was doing (which we could then watch on a tv screen), and he went in and removed all of the wax! She was perfect the entire time! Then we took her down the hall for two different hearing tests, both of which were inconclusive. We decided the best way to check her hearing is going to be another ABR, the procedure she had done years ago but this time she'll have to be sedated. Since we don't like to put her under anesthesia for just anything, we're trying to see if we can coordinate it with an MRI her neurologist wants her to have done (it has also been years since she's had an MRI). So sometime over the next couple of months, she'll have those done. No rush. I'm in no hurry to put her under anytime soon! (She was actually scheduled to have the MRI done next week...this will allow us to push it back even further!) Ryan has been fine all more ear drama! Hoping he straightens up and has a good day at school tomorrow! Definitely enjoying these good days for my girl!

Monday, April 28, 2014

Bad? Not this girl!

Reagan slept well last night and woke up this morning feeling even a little better than the day before. Less stressed (although still a bit tense), but not bad for day 3 of bad days! You really couldn't even consider it a bad day! She had speech and school and did really well with both! She was very visually attentive and did well with making choices! She had the occasional kooky squeal, but it never led to anything else so all was good. The day was a little bittersweet as it was her Monday nurse's last day. She's been with us off and on since we moved to Austin, but she didn't really want to work weekends anymore and the only way they could find a new nurse was to give them Sat-Mon! Hopefully we'll still see her from time to time, as she'd be a great nurse to fill in (if available) since she already knows Reagan so well! There was drama today but it wasn't from was from Ryan! He definitely gave us a bit of a scare! His school called me about 45min before his usual pick up time and said he didn't seem to be feeling well and was pulling at his ear and blood was draining out! Well that scared the you know what out of us! So when we picked him up we drove straight to the pediatrician's office and waited for them to open back up after lunch. They looked in his ear and just said that it just looks like drainage (probably due to his allergy congestion all weekend) that had picked up some of the old dried blood in his ear and made it look like fresh blood! Just to be on the safe side, we're going to start the antibiotic drops he used after surgery again and then he's got his ENT follow-up next week so they will check it again then! Never a dull moment. On a positive note, he didn't freak out at the drs office when she looked in his ears (that's a HUGE improvement). He's definitely been "talking" and singing a lot more lately and most of what he's saying resembles real words. He sings his favorite Twinkle twinkle little star a lot, but also Old Macdonald and Wheels on the Bus (although with those the tune is perfect but the words are a bit fuzzy). Friday the speech therapist was reading him Brown Bear, Brown Bear and he really enjoyed it and was even repeating "Brown Bear, Brown Bear what do you see" (or something very close to that)! He also said teacher, another word I've never heard him use. Definite improvements all around, but he's still struggling with frustration and fussiness from not being able to communicate his needs, hopefully that will come very soon (for everyone's sake)!!
Please continue to keep sweet Abigail in your prayers! She's undergoing another procedure today. Praying they can get her stable and that she can come off all of the support without any issues! Such a fighter!

Sunday, April 27, 2014

Not so bad

Reagan slept well last night and woke up serious this morning but otherwise OK. She didn't even seem to be sensitive (as she usually is on bad days), so we were able to just bring her downstairs. She was fine with the hustle and bustle, even with her brother's whining and crying, she remained cool and calm. There were only a couple of times all day what she even made the slightest peep like she might be getting a little too excited. I didn't even have to give her any pain medication all day! Overall, it was a pretty good bad day. She was obviously still very tense in her body and a little congested, but not too bad. Nothing compared to her brother, who has been sneezing and dripping all day! He's even started coughing a bit, which has me a little worried. Of course it didn't stop him from joining Daddy in the pool this afternoon! This kid is crazy! It was a warm 97 outside but the pool was still 78...he didn't care!

Saturday, April 26, 2014

Bad days

Reagan slept well last night. Her pump started going off at 1:30am (she had squirmed around in her bed and kinked her tubing), but she never even woke up! When she did wake up this morning, she was much more serious, there was definite tension in her body, and no sign of a smile. It was Day 11, and we were expecting the worst, so I was actually pleased that she was still OK. Grandma got here around 8:30am and Reagan was good for maybe another hour or so...then the bad days began! Alternating clonidine and Lortab/oxycodone definitely seemed to help, but there were definite breakthrough periods where she'd cry and cry! Poor girl. She sounds a little congested today too...Ryan and I have both been miserable with our allergies, so hopefully her won't be as bad,  I'm hoping she'll sleep tonight and wake up much improved tomorrow. Today just hasn't been a good day. I'm having a bit of a pity party for myself (and Reagan) as well. Bad days certainly have a way of bringing out the frustration, that and hearing that our little friend Abigail is in the hospital in ICU! It's just so scary! Please keep her in your prayers...she lost a lot of blood, but they think they found what was causing it and they have her stabilized, but she's still intubated and in very serious condition!!

Friday, April 25, 2014

Super calm

Reagan slept well last night and woke up super sweet and smiling this morning. She was super still, not moving a muscle, but her eyes were wide open! She's been that way most of the day today. So calm, no kicky legs, no hands in the mouth (until tonight), but a little spitty (which sometimes happens when she's relaxed like that)! We took a nice little walk this morning before it got too hot outside. She had speech, speech/OT from the school, & her teacher all come today! It's been another busy day! Tonight she was definitely more into her hand and very spitty/chokey. She was fighting sleep a little, so I sure hope she's able to get some rest tonight! Ryan and I have been sneezing a ton, but I think it's just allergies! Hopefully Reagan won't be affected!

Thursday, April 24, 2014

Still good!

Reagan woke up me up around 1:30am last night, fussing, tossing, & turning! She was getting increasingly agitated and sticking her tongue out almost as if she were nauseous, but her eyes were still closed. I decided to try a dose of Lortab and Zofran. It definitely did the trick...she was sleeping soundly shortly thereafter! She slept in a little this morning (we had no idea what to expect), but thankfully she woke up a happy smiley girl!!! She's had a busy day of therapy...Speech, PT, & OT...and she did great with them all! She's been so "into" her hand lately (in the mouth), her speech therapist is trying to give her lots of oral stimulation as well as sensory input with her hand to see if we can lessen the constant jamming her fingers down her throat! She's been a little spitty today, so we're keeping a close eye on her! Tonight Grandpa watched both kiddos so we could go to Bible study...thankfully they both behaved! Hoping everyone gets some sleep tonight!

Wednesday, April 23, 2014

Rolly polly

Reagan was restless again last night. She was not falling to sleep on her own, so I gave her a dose of clonidine around 11pm. She eventually dozed off but was very squirmy again last night. She woke up early this morning, but she was smiley and happy so all was good. We had a new nurse orienting today so she got double the attention! She had OT in the morning and speech at noon and even ate some "peach cobbler" (baby food)! She had a good day but definitely showing some signs of things being a bit off! Temperature regulation is WAY off! Her hands and feet are cold and clammy and she's sweating her back wet over and over again! Tonight she enjoyed rolling around on the floor in the living room, she got a lot of exercise (kept rolling over into her tummy and getting stuck) and it kept her back from over heating! Tonight, right before bed, she was getting a little goofy (on edge) and sticking her tongue out. Clonidine helped settle her down and she eventually dozed off in my arms. Sweet girl! I hope she can get some sleep tonight!

Tuesday, April 22, 2014

Another busy day

Reagan was very restless last night. She started getting more and more vocal and finally around 3:20am I got up and gave her clonidine. Eventually she did go back to sleep! She slept in a little but woke up in time for back to back to back therapies (vision, OT, & PT). She did well for everything...she was very vocal and interactive. Then we sqeezed in a bath and a quick nap before heading to the Aquarium this afternoon. It was a perfect day for it...uncrowded and both kids were behaving themselves. We had a great time! 

Monday, April 21, 2014

Just another sleepy Monday

Reagan had a sleepy day today! This was a typical time that she wound have a sleepy day, but I'm sure our jam packed weekend contributed a little! This is actually her second sleepy Monday in a row (last Monday was an out of the ordinary sleepy day). But today her being a sleepy day was no surprise. She was a little restless the night before, but she slept nonetheless. She did wake up for a bit this morning, but only an hour or so, long enough to get her clothes and diaper changed! Poor girl, she needed her rest! Tonight she did wake up for a bit, but it was more me waking her up! She was very restless and moaning a lot in her sleep, so finally I just picked her up and forced her to wake up for a bit. She eventually fell back to sleep on her own but she still seems very restless! Hope she gets some sleep tonight!

Sunday, April 20, 2014

On the road again

Reagan was restless last night. She was fighting falling asleep big time! Mike eventually got her to doze off, but I'm not sure how well she actually slept! This morning she was up and at em early. When I got up, she was watching Sunday morning political shows with Daddy. Today we made our second road trip in two days...this time it was to Houston! It was an hour longer than our drive yesterday and it felt like eternity! Ryan was more difficult this time around and I found myself playing referee as he tried to take his frustrations out on his sister! Reagan was such a good girl and quite the traveler! Ryan had fun running a muck but still doesn't have the hang of hunting Easter eggs! I told him to pick up an egg and put it in the basket, he carried it over to his basket ball goal and  tossed it in! Not quite right, but it was a basket! We're all exhausted tonight and my girl is looking restless once more! Please keep it in your prayers that she can get some sleep tonight! 

Saturday, April 19, 2014

Morgan's Wonderland

Reagan slept well again last night. She was awake and kicking by 7am, but she was in a good mood. She was still having the random squealing outbursts this morning, but she mellowed out a bit as the day went on. I spent the morning getting everything ready for our trip to Morgan's Wonderland for Jackson's birthday party. I'm SO glad that everything worked out just right and we were able to make it! I met Jackson's mom Meghan years ago, when Reagan and Jackson were both right at a year old and starting ACTH treatment for their infantile spasms. A year later Reagan and Jackson went through a month of HBOT together in Austin. Jackson has had multiple brain surgeries and is doing really well now! It's amazing everything our two kiddos have been through in their 7 years! It was a beautiful day...sunny but breezy enough that it was very cool and comfortable. Reagan was laid back and sweet and Ryan ran around like a maniac (but definitely enjoyed himself)! It wasn't the best day for poor Jackson and he had several meltdowns, but hey, we've all been there (and Meghan later found out the insole of his shoe was all twisted up which could have been part of the problem)! Anyway, a great time was had by all and we will definitely be venturing back to the park in the future. It was approximately an 1.5hr drive from our house, but it didn't really feel that far away! Both kids were very yawny once we got home, so I'm pretty sure we're all going to be sleeping well tonight!


Friday, April 18, 2014

Still a little off but better

Reagan slept well last night and woke up this morning a little more happy. She's still definitely tense (especially in her body), but she's not nearly as serious as precious days. Still having lots (probably more) of the ultra high pitched squeals! And even though the squeals can sometimes lead into agitation, there were no signs of that. Only one therapy today, speech, and she did well with that. They're still working on getting approval for her eye gaze device. Looks like we might get to another loaner device in the meantime. Reagan's still got a little hint of congestion in her nose and doing the occasional cough/choke, but it's hard to tell if it's actual nausea, sinus drainage, or her jamming her fingers down her throat (so she's still on the round the clock Zofran). Tomorrow (Saturday) is the big day and we're going to attempt to venture out to Morgan's wonderland for Reagan's friend Jackson's birthday party! We've never been and we haven't seen Jackson and his family in a couple years, so it should be fun! Praying everyone is in their best behavior!

Thursday, April 17, 2014

Getting there

Reagan slept well last night. Her brother, not so much! I'm not sure what was up with him, but he woke up crying at 4am and we made the bad decision to put him in bed with us. He's awful to sleep with, tossing and turning, kicking and elbowing, no one got much sleep! Reagan woke up kicking the side of her bed, but otherwise content. She's had a pretty decent day, for day 2 of a bad streak. She's been pretty serious, no fussing or smiling, with the occasional straight faced super sonic high pitched squeal! Lots of chorea, especially in her legs. Still a little chokey and definitely stressed, but not too bad overall. She even tolerated PT and OT. Hoping tomorrow will be even better and that she'll be back to normal by Saturday (we're supposed to go to a birthday party Saturday at Morgan's wonderland)! 

Wednesday, April 16, 2014

Bad but not too bad

Reagan slept well last night but woke up this morning tense. No smiles, super seemed bad days were upon us!  She was fine though and OT even managed to come and get in an early session. Unfortunately that was it for the day! She had a couple periods of nonstop crying this morning! She eventually calmed down and slept a lot this afternoon! Tonight she was OK. Stressed, but OK. Still very coughy/chokey. Tonight she fell asleep on her own, so hopefully she'll get some good rest tonight and wake up tomorrow feeling better! Thank you for keeping my girl in your prayers!!!

Tuesday, April 15, 2014

Day 11

Reagan slept well last night. Today was Day 11 of her 11 day cycle so we weren't sure what to expect, but we were pleasantly surprised! She had vision at 9am and she spent most of the time in her new little room that the vision therapist brought her (which really isn't little at all)! She did great with that and then had PT at 11. Her therapist got her  up in her stander and again she did great! Then at 2 she had OT. She was a little floppy, but she did well with that too! We were also able to squeeze in a bath this about a full day! All afternoon/night my girl was very calm and still. I did notice a touch of sensitivity though. And she has a little bit of a cough. Praying for sleep again tonight!

Monday, April 14, 2014

Super sleepy

Reagan had a super sleepy day today (which was totally unexpected)! She slept the entire night and nearly the entire day! She slept through having her vitals checked, diaper changes, a beeping pump, lots of medicine given, and a noisy brother! She didn't wake til 5:30pm and even then was still very groggy (and snorty/snotty)! She stayed awake though til 11:15pm and finally fell asleep with the help of clonidine! Today was Ryan's third day of school. Both of his usual teachers were out so I was really worried about how he was going to do (he was hysterical as I was leaving)! He calmed down though and had a good day (half day). He was asleep on the teachers lap when I came to pick him up (fell asleep during storytime)! Tonight I noticed that he's got a lot of dried blood stuck in his left ear...not sure if we need to do something about that or not. He has been pulling at that one a bit, so I'm gonna call the ENT tomorrow. Then when it was bedtime we were in his room reading books when he belted out (he's a singer) "kinkle kinkle little star, how I onder what u are" (or something along those lines)! I couldn't believe it! I mean, he mumbles something to the tune of the wheels on the bus and he sings EE-I, EE-I, O...but never a full sentence from a song! And that's not even a song I sing to him! He must have learned it at school! I was floored! And then a few minutes later he picked up a horse puzzle piece and said neigh! He's definitely making progress! Thank God! Keep those prayers coming!

Sunday, April 13, 2014

Sweet and laid back

Reagan slept well last night and even slept in a bit this morning! She's been SO sweet and smiley today! Yesterday she was good too, but still with a tinge of sensitivity, a few times she seemed like she might get too excited and freak out (but she never did)! Today she was definitely more laid back, but the hands are still constantly in her mouth! That poor left hand is SO shriveled and waterlogged! We've been doing our best to keep it out of her mouth, but it's a struggle (and she's just so strong)!!! She sure is darling though so we'll forgive her! She's been very congested, but still no drainage! Maybe her allergies are aggravated from being outside so much yesterday?!?! Today Grandma and I spent most of the day in the yard planting! We relocated a few rose bushes (that we hope will survive the transfer) and put in a bunch of new flowering plants that should help attract hummingbirds and butterflies! Grandma is the one with the green thumb, so hopefully I can keep the plants alive once she leaves! This afternoon Daddy and Reagan took a little spill on our staircase! Thankfully they were on the second to last step and no one was hurt, but it was very scary (we've all slipped on that step before, not sure what we can do about that))!! Tonight Reagan got in a good bath with Grandma! She actually gets in the tub with her (in her bathing suit) so Reagan can float around! She loves it! Hoping my clean girl sleeps well tonight!
Brother admiring our yard work!

Saturday, April 12, 2014

Outside fun

Reagan was restless last night! Not sure how much real sleep she got, but she sure was vocal and sweet this morning! Brother went with Daddy to the Crawfish festival while we hung out with grandma outside (she's our designated gardener) and took a trip to a local nursery! Good times! We won't lie, sometimes it's nice to just have girl time! Grandma gave her a worm to hold, put a moth on her (it was dead but pretty), she chilled by the was a good day! Tonight she was VERY congested and seemed to be having some drainage down the back of her throat that was making her nauseous (nothing was draining from her nose though)! Poor thing! Hopefully she's able to sleep tonight!

Friday, April 11, 2014

Darling girl, limping boy

Reagan had a good day today! She slept well (I think) and was up and at em by 7:30am. She's been sweet and smiley, but still battling the hand in the hair/hand in the mouth!! She's been very nasal/congested but no drainage except from one big sneeze! She did wonderful with therapy and school today and she was very vocal, but it seemed very purposeful!  Ryan has been fine, less coughing but still has a lot of greenish drainage from his nose! He also was randomly limping this morning. We have no clue why, but it seemed to go away after a couple of hours (although tonight he was kinda doing it again). I managed to get his antibiotic into him by dividing it into 4 different cups of carrot apple juice (1ml in each 6oz cup). This is not optimal, as he really needs to take it all at once, but we'll take what we can get! Hoping for a relaxing weekend with Grandma...both kids should be thrilled to see her as its been three weeks since her last visit!
A little nap this morning between therapies!

Playing with the speech therapist's shoes...

Thursday, April 10, 2014

New ears for brother!

Reagan woke up bright and early today! She was wide awake at 4:45am when I got up! Maybe she anticipated that something was going on?? We left the house at 5:30am with a very groggy boy and headed into town. We got there by our 6am check-in time and there were already a few people there before us! Ryan was quite the trouble maker in pre-op! He didn't want them messing with him at all! There was even more fighting/crying when it came time to give him the Versed! We managed to get half a dose in him, but that's all! Thankfully, it was enough to loosen him up a bit so they could grab him and run off to surgery! (I sure wish they could have given him gas first!) Anyway, his dr came out maybe 20min later and told us everything went well! They did also remove his adenoids (in addition to placing ear tubes). It took another 20-30min before the carried him out to us! I was really worried about how he was going to do in recovery, but he was a superstar! Very little fussing and he woke up and gulped down a full cup of juice no problem! Shortly thereafter they took his iv out and we were on our way (around 8:15am)! Reagan fell back to sleep around 7:30am and then slept pretty much the entire day today! Ryan already seems to be feeling better and eating better! We even went on a little roadtrip and he did fine with that as well! Now we're dealing with the aftermath of the surgery...fighting to get antibiotic into him! If anyone has any helpful suggestions on that (he's on Cefdnir and we've already flavored it)! He won't touch his juice if it's in it and he threw up when we tried to inject it in his mouth! So stressful! We've got to get it in him! And tonight he's got a nasty cough that's keeping him awake! Please continue keep him in your prayers! I'm soooooo tired!!!

Wednesday, April 9, 2014

Good girl...Thursday's the big day!

Reagan had a good day today! She slept well last night, did well in all of her therapies, and even tolerated her brother's fussing just fine! Sweet and smiley...a little tense in her body still but that makes for great head control! We were nurseless again, so thank God for my dad coming over again to help with Ryan. He's still fussy/sick...still getting over an ear infection and the flu (and his ears still seem to be bothering him)! But tomorrow is the big day...ear tubes and possible adenoid removal! Please keep it in your prayers that everything goes smoothly and that he has a quick recovery! We have to be there by 6am, so I'm guessing he's gonna be the first case. Hopefully they'll still be willing to do it in spite of his congestion and runny nose!
Spunky this morning!

Little nap after speech!

Tuesday, April 8, 2014

Laughy awake girl and miserable boy

Reagan was up all night last night! I honestly don't think she fell asleep once! Thankfully she was good and kicked around in her chair all night. Her brother, on the other hand, was not so good and woke up crying at 5:45am and we've been up ever since! Around 7am I got a call from Reagan's nurse (never a good thing to get a call from a nurse or nursing agency in the morning) to say she was sick and not coming in today! Of course we have no back up nurses, but thankfully my dad was able to come over and lend a hand with her very needy brother! So other than not sleeping, having 5 poos, and two fairly big throw ups today...Reagan had a decent day! She had the crazy laughs, so that's always a good time. She also had a appt with her genetic & metabolic specialist and she couldn't have been better for that! My step mother came along with me to help, but Reagan was as good as gold!  Unfortunately the same cannot be said about her brother! He definitely seems worse today than previous days (a close second to Saturday, his most miserable day). His nose is an all time maximum runny, he's got a nasty cough, and a low grade 99-100 fever. And to top it off, he's just all around miserable! Super needy, super whiney, weak...poor thing! Please keep it in your prayers that he somehow turns this around and feels better by tomorrow! We really don't want this interfering with his ear tube surgery on Thursday! Also, please keep it in your prayers that Reagan gets some sleep and avoids any more nausea! I sense a sleepy day coming on!

Monday, April 7, 2014

Wrong way

Today has taken a turn in the wrong direction. We kinda saw it last night with the increased agitation, but we were hoping it wouldn't hold up! Reagan did not sleep much last night. She'd doze and then kick (in her chair), doze and then kick. Today she's definitely been more tense. Lots more chorea and extension. Her nurse even said it sounded like she had some junk in her upper lung (which is always clear)! We canceled all therapies because she just wasn't up for them. We kept hoping she'd doze off (she looked SO tired) and we even gave her clonidine and Oxycidone, but nothing helped her fall asleep. The clonidine loosened her up a little but she never dozed once! Tonight she was still very kicky but with a hint of a laugh. No chance of sleep tonight! It's just one of those nights! Brother did make it in to school today (his second day) and he did really well despite a runny nose. He did fall asleep around 12:20 and school's not over til 1, but he almost made it! That did mess up his sleep schedule though and he took a long nap late afternoon but still went to bed at a regular hour! Hopefully he sleeps tonight!

Sunday, April 6, 2014

Better day, stressed night

Reagan didn't last long in her bed last night, by 2:30am she was awake, tossing and turning so we had to put her in her chair. A dose of clonidine helped to settle her down and get her back to sleep. She was still asleep when I got up at 6:30am to give her her Zofran. This morning she seemed a lot less stressed. Didn't cry during diaper changes (although still tense) and she didn't even mind being held. She spent a lot less time in her tomato chair today...she was fine with laying on the floor kicking around, sitting in her bean bag chair, and being held. However, tonight she's back to being stressed! Impossible to hold and constant frantic kicking...even the oxycodone and clonidine is not making a dent. Not good. Not good. Please keep it in your prayers that somehow she'll settle down and get some sleep tonight and wake up improved tomorrow. Ryan has been fever free today but also ridiculously needy/whiny. I'm thinking of sending him to school tomorrow (the dr said 24hrs fever free was safe), but I'm super nervous that he'll just be too high need to make it the full 4 hrs! On the other hand, I'm hoping that staying busy might actually be good for him and that he'll have less time to fuss and whine?!?! I hope! Please keep it in your prayers that he's feeling better tomorrow and that he does well during his second day of school! 

Saturday, April 5, 2014

Bad day & sick brother

Sleep last night wasn't bad. Ryan slept through til morning. I had to get up at 5am to give Reagan her Zofran and she was awake, but she did go back to sleep and slept for a bit so that's good. She was in a "don't mess with me, don't come near me mood today"! She hated having her diaper changed and would start crying (hold her breath and turn purple) each time! There were a couple instances where I picked her up and insisted on holding her and after a lot of fighting she would eventually fall asleep in my arms! Poor girl, these bad days are so hard on her! Thankfully, no sign of fever today so hopefully we intervened with the Tamiflu just in time! Ryan was still extremely miserable today! You can tell he has the flu just by looking at him! He's still very up and second he'll be singing and hopping around and the next second he's fussing and clinging to my leg! His ears still seem to be bothering him, and although I never got him to take his antibiotic yesterday, he did take it today in some juice! He drank a little more and even ate a little chipotle today, so hopefully he's getting better on his own (because Lord knows he won't take the Tamiflu)! He's still running a pretty high temp 101-102 but it does go down with the acetaminophen suppositories I'm having to use (because he won't take the oral ibuprofen)! Anywho...hopefully we can all get some sleep tonight and everyone will be feeling a little better tomorrow! Thank you for keeping us in your prayers! 

Friday, April 4, 2014


Reagan had a bit of a restless night. I woke at 4am and heard her moving around. I got up and went in her room, at first she still had her eyes half closed, but after a few minutes she started waking up. She was getting a little antsy and I was worried about leaving her awake & lying down after her nausea last night! I decided to put her in her chair and then I laid beside her til 5am so that I could give her another dose of Zofran! She was still groggy but awake when I finally got back to bed. I'm not sure if she ever fell back asleep! This morning and all day today, she's been very loose and relaxed in her body, but still a little sensitive to stimuli and spitty! She did still have a fever this morning, so we decided to get both her and her brother in to the pediatrician this afternoon! It was strep tests & flu swabs for everyone! The only positive result (which is not positive at all) was that Ryan has the FLU! Flu B to be exact. Well that explains him spiking a fever this afternoon, refusing to eat and drink all day, and his overall whiny/neediness today! Poor thing! We've got Reagan quarantined upstairs in her therapy room (and taking a preventative course of Tamiflu) and Ryan downstairs. He fell asleep in the car on the way home from the pharmacy and I transferred him to the bed in the spare bedroom...where he's been ever since! Very unlike him! Not sure I'll be able to get him to wake up and drink something (and he's refused to take his antibiotic for his ear all day)! Prayers for our sick boy, our girl who's headed in the wrong direction, and us to remain uninfected are greatly appreciated! 

Thursday, April 3, 2014

Sick house

Everyone finally got some sleep last night (thank you Lord)!! Reagan was a little restless and was awake and kicking around by 6:30am. She was sweet and previous though! This morning she had OT and then PT and did great with both. Then we went on a bit of a wild goose chase, when I got her doctors mixed up and we showed up for a ENT appt instead of neuro (in my defense they both have the same last name)! Anywho, we then drove over to the neuro's office and they were able to squeeze us in an hour after our scheduled appt! It was really just a check up but we hadn't seen him since her EEG. He actually used something along the lines of wonderful when referring to her EEG results, so that's always a good thing! I told him how well she's been doing since adding the Zofran  pre-bad days. Well, obviously we didn't knock on enough wood because tonight she had a huge throw up and spiked a 101.9 fever! She was great all afternoon, very laid back and calm. Then tonight she just seemed super sensitive and very shaky. She dozed off but then woke up and had that huge throw up (she seemed very gunky/congested...Mike and I both have had sore throats the last couple days). Then a little later, I picked her up and she was doing that fixed gaze and head turn (to the left) and I couldn't break her out of it! Finally, it seemed like forever, she snapped out of it! Not sure what that was, but I don't like the looks of it! Hopefully it was nothing or just craziness brought on by the fever. Praying she'll cool down and be able to get some sleep tonight (no nausea)! Brother is still coughing up a storm, so I hope he can stay asleep! 

Wednesday, April 2, 2014

Brutal night

Reagan slept well last night, she was restless but at least she slept! Unfortunately, she was the only one that got any sleep last night! Ryan started running a fever and became inconsolable! He refused to drink his juice (with pain reliever in it) and he was a burning up, restless mess all night! Since he was in our bed, none of us got any sleep whatsoever! He'd doze off for a bit, but would wake up crying every 20min or so! Poor thing! Turns out, he has yet another ear infection (in both ears)! I guess this is validation that he does in fact need those tubes! So...he's back on antibiotics which should hold him til his tubes are placed next week. Reagan has been a sweet smiley girl today! She's still very crunchy and easily excitable at times (she freaked out a bit at the beginning of OT), but otherwise good. She's doing well in her wheelchair or beanbag chair, but not so much in the special tomato chair today (it's too easy for her to crunch up in a ball in it)! She had speech and school this afternoon and her teacher was very impressed! Ryan missed his second day of school today so we were pretty bummed about that! He's been very up and down all day...he seems perfectly fine and happy one second and then he's a crying mess the next! He's also not wanting to eat anything (talk about a struggle)!! He didn't take much of a nap this afternoon, and tonight he's already been up crying once, so please say some prayers that he (and everyone) can get some rest! 

Tuesday, April 1, 2014

Tubes for brother

Reagan had a pretty good day today. She's been sweet, but still very crunchy. She had PT this morning and did well with that. Then this afternoon she looked like she was going to fall asleep right before OT, so we canceled! Well, I think she was just playing possum because she woke up and then was awake the rest of the afternoon! Turkey! I think she was just faking us out! Ryan had a crazy day! He woke up with throw up down the side of his crib, but otherwise seemed fine! He had his appt with the ENT to get his hearing checked. His ears had fluid in them (despite finishing up a full course of antibiotics less than a week ago), he failed his hearing test, & they scheduled for him to get tubes next Thursday! I'm definitely nervous about him having any procedure done, but if this is the cause of his speech delay, then we really need to get it fixed ASAP! This afternoon he had his first speech therapy visit. Reagan's speech therapist has been approved to see Ryan 3x a week because of his recurrent ear infections! He did great and I even heard a few new words! Hopefully between the tubes, starting school, & speech therapy Ryan will get back on track quickly! Tonight he really kicked the fussing into full force, which was starting to annoy his sister! Something tells me it's going to be a long night!