Thursday, October 31, 2013

Unhappy Halloween

Reagan slept well last night but when she woke up this morning, we knew we were in trouble. Very serious, not a smile in sight...then she immediately started grabbing and pulling at her hair, the next thing we knew, she was crying inconsolably! She cried for a while but she did fall back to sleep on her own. She woke again and was actually quiet for a while, but still grabbing and pulling her hair nonstop! Then she escalated and she was crying once more. This time we tried Lortab and it did help her settle down and fall back to sleep, but only for an hour or so. The next time she woke crying Grandma was able to get her back to sleep. The next time, we actually tried some ciproheptadine (Periactin) at a slightly higher dose. Last night after the talk, we were able to speak with a doctor who is known as a bit of a CVS (cyclic vomiting syndrome) expert. I had read about him online and even considered a trip to Ohio to see him, but last night we were able to pull him aside and tell him about Reagan and get his opinion on these "cycles" she goes through. He seems to agree that it sounds like CVS to him. He gave us several suggestions that might be worth trying. One is to just get her in and on an IV during one of these episodes. Start her on dextrose and see if just that alone helps. If not, then try a combination of a sedative (like valium), migraine (like Imitrex), and anti nausea medication (like Zofran) all given via IV. His thought (which makes sense) is that during one of these episodes, her gut shuts down so even though we give her these different medications (which theoretically should help), they are not absorbed properly because of the dysmotility. I don't know. Maybe. I'm not a fan of putting her in the hospital...and we certainly would not be willing to do it every week or week and a half...but I can see merit in having her in patient at least once so that all of her new doctors here in Austin and get to see what it is that she has been going through for the last 4yrs!! He also would really like her to have an EEG during one of her nausea episodes. I don't know, I'm pretty sure she's already had one during an episode of nausea (and it was NOT a seizure), but I'm not 100% positive (maybe I can figure it out through the blog). That's important information to know. He also mentioned cyproheptadine, which she takes occasionally as needed for nausea, but he mentioned that she probably wasn't taking high enough dose for migraine symptoms (or abdominal migraines). Anyway, lots of information, it was a great talk and I'm glad we were able to go! There was no trick or treating tonight for the princess...or the boy either (but just because he wasn't into it)! Please say some extra prayers for my girl to get over this episode quickly!

Wednesday, October 30, 2013

Mini mito conference

Another late one! Reagan was a little restless again last night. I found her in bed wide awake this morning with covers kicked off and her feeding tube pulled up over her head (loosely around her neck)!! I about had a heart attack when I saw that! I'm never quite sure where to put her tube, if I have it down and under the covers she can kick it and get it tangled in her feet (and possibly yank it out), if I have it up, sticking out of the covers she grabs onto it and pulls it over her head!!! This girl! She woke smiling once again today so we were thrilled!! She's had yet another really good day. She had PT, speech (her therapist did a super cute Halloween craft with her), and "school" today! Busy, busy! Tonight Mike and I got away (thanks to our nurse for staying late AGAIN and my stepsister who came over to watch Ryan) to go to a patient/family mito meeting. A mini mito symposium, if you will. It was great! The Child Neurology Society had their yearly conference and dedicated the entire first day to mito! The doctors talked about the fact that they had never seen such a packed house for any talks at ANY conference they had been to! Out of about 1000 practicing pediatric neurologists over 450 were here at this conference, learning first hand about mito from experts in the field!! Very humbling. The speakers were great (and we were able to ask questions throughout) and some exciting new data was presented! Overall a really great experience! So glad we had the opportunity to attend (all thanks to the UMDF)!! And SO glad both kiddos were well behaved while we were gone!!

Tuesday, October 29, 2013

Rollypoller

Reagan slept last night but she was a little restless! She was moving around a lot but still had her eyes closed. Then around 5am she started getting vocal and was obviously awake! I had to get up at 6 to get ready to leave for her early 8am appt with her new geneticist/metabolic specialist, so her being awake was actually a good thing! I was able to get her dressed and ready in advance! I pulled brother out of bed at 7am and we hopped in the car and were off! We did make a quick stop at Grandpa's and handed Ryan off (I knew I was going to have to go over a lot of history with this doctor, so it was better to not have him whining & hanging onto me)! We got stuck in some traffic, but we still managed to get there just in time! They took us back quickly and when they put us in a room I saw the doctor's bag sitting there (always a good sign that you won't be waiting long). He came in shortly thereafter and proceeded to tell me that a lot of Reagan's medical records never made it to him (just the most important ones...like her muscle biopsy results and whole exome sequencing)! He had gone through a lot of what he did get, because he was familiar with some of her medical history (which is refreshing), but he still asked tons more questions to "fill in the holes"! It was a long (almost 2hr) appt. I'm not a huge fan of his personality, but I do think he's highly intelligent...a trait I feel is lacking in some doctors these days!! Anywho, Reagan was great the entire appt. She was quiet (quite the change from yesterday) and didn't seem to mind all of the talking! Afterward, we stopped by and picked up brother who quickly proceeded to doze off in the car! Reagan only had one therapy this afternoon, OT, but she did great for that! She definitely got more vocal as the day went on. Tonight she was a squirmerainer! I left her for a few minutes while I checked on her brother and came back to her completely squirmed off her mat and pulling her tube tight! Is this girl trying to give me a heart attack?!?! She did it again a little later, her tv had turned off due to inactivity and I swear it looked like she was squirming over to it to try to turn it back on!!! Such a rollypolly girl! We did have a tough time getting her to sleep again. We were hoping to do it without medicines but that didn't work! She did eventually doze off thanks to clonidine. Looks like it's gonna be another restless night!







Monday, October 28, 2013

Very vocal

Sorry for the late post! Reagan slept well last night but she did wake up a little early this morning! She was smiley and very vocal all day! I swear she's trying to talk to us! I asked her if she wanted her brother to kiss her the other day and I swear she said NO!! And that same day her therapist was talking to her about a dog and I swear she said DOG!! She's a spunky one! At noon she had speech and then "school"/vision in the afternoon. She did great for both but she was super vocal and excitable. I was a little worried that all of the excitement might actually cause her to end up fussy but she made it through the whole day with a tear! She was getting increasingly on edge as it got later but we finally got her to sleep with a combination of clonidine and Lortab.

Sunday, October 27, 2013

Mellow all day, but agitated tonight

Reagan slept well last night and woke up this morning as sweet as can be! She was very calm and after a bath, she drifted back off. She woke an hour or so later, but she continued to be a little drowsy most of the day. While Reagan was sleeping, we went to lunch with my Dad for his birthday. There was a long wait but Ryan and the guitar player kept us entertained! This afternoon we went to my step sister's house for a Halloween culdesac get together. Reagan was very well behaved and we even decorated a pumpkin to coordinate with her cute Halloween outfit! Ryan was a bit of a mad man, but he really enjoyed running around (in the street) with the other kiddos! When it was time to leave, Reagan started getting a little agitated. We thought it might be the music, but maybe she just wanted to stay? Even after we got her home, she continued to escalate. I gave her clonidine and it agitated her even further! I gave her Lortab and 5min later she was calm! I'm not sure if it's the combination of the two meds that works or if it's just the Lortab? She's asleep in bed now and I'm hoping she'll stay that way. And also hoping she wakes up tomorrow feeling better! We need more good days for our girl!

Saturday, October 26, 2013

Road trip

Reagan slept well last night and woke up sweet and smiley this morning around 7:30am! She and her brother were both up early! Mike went in to work first thing and didn't get back til after 10am. We left shortly thereafter. As we were driving down the road (maybe a half mile from our house), we second guessed as to whether or not we had the correct key for our storage unit. We almost turned around and went back, but we decided to just keep going. It HAD to be the right key, right?!?! So off we went...to Houston or bust! It was smooth sailing until we got to Katy. The traffic on I-10 came to a complete halt! Mike was able to go through the median (thank goodness for 4x4) but then we ended up at a complete standstill on the feeder as well. We later found out that I-10 had a complete shutdown of the freeway in both directions at hwy99! Insanity!! It was an hour or so detour that we didn't have time for! But finally we made it to the uhaul place to pick up our trailer and then we had another 15min or so to the storage facility. When we got there, we grabbed two carts and headed for the unit. The key did not fit!!! Seriously?!?! The keys we had were from the other storage unit we had! So our options were to file a report with the storage facility and have the manager come and cut the lock off in 5-7 business days or to call a locksmith to come out ! Since waiting wasn't an option, we called a locksmith! A couple of the places I called couldn't even remove the maximum security disc lock we had, but finally I found a place that could and they could be there in 15min! Sounded too good to be true! It was!! The guy got lost and ended up on the other side of town! We had to then wait another 45min for him to head back over to our side of town! Once he finally got there and looked at our lock, he proceeded to tell us that there was a $39 fee to come out and an $89 fee to pick the lock!! GREAT!!! Then he fidgeted with the lock for 4min before popping it open!! Crazy!! But at this point we didn't care! We were just happy to be on our way! We loaded up the trailer in 3 trips and were out of there! We did stop by our old neighbors' houses before heading back! They were happy to see us, but not too happy that we left both kids at home!! Reagan and Ryan did well without us. Reagan had a but of a sleepy day, showing a couple signs of nausea tonight (and biting her lower lip repeatedly), but overall she had a good day. Ryan was good and enjoyed getting outside with Grandpa! We had a much smoother drive on our way back, we avoided I-10 and took 290. That was definitely a good choice! We made it home in record time (getting home right at 9:30)...Ryan was already asleep and Reagan was almost there! I've got to thank our nurse and my dad for doing such a great job with the kiddos! It was a much longer trip than we expected, but they were troopers and we SO could not have done it without them! And a nice bonus, Mike and I had more alone time than we've had in 6yrs!! But glad to be home safe and sound and back with our little ones!!

Friday, October 25, 2013

Sleepy and a little on edge

Reagan slept well last night. She woke up this morning sweet and smiley (and just in time for PT). She did really well and even tolerated some time in her AFOs. Then her speech therapist came at noon and she did great for that as well! I don't know if speech wore her out or what, but she dozed off and she was OUT! She slept through OT, but her therapist came anyway and had some input for the "mobility specialist" who came from the school system. She didn't wake up until 6:30 or so when her brother woke her up because he fell off the sofa and onto his face! Lots of tears (but he was fine)! Reagan woke calm but a bit startled. She was obviously still a bit sensitive and her brother's fussing (throughout the night) did set her off a couple of times. She never actually cried, but she would let out a high pitched squeal to let us know that she was about to freak out! She kept biting/chewing on her hand, and I think she was actually hurting herself. She seemed to settle down a bit when I would take it away from her and put it under her weighted blanket. I'm not sure where she's headed with this but we haven't had nearly enough good days for her to already be headed back in that direction! Please pray that she pulls out of this and has a good day tomorrow! We're driving to Houston to get the rest of our stuff out of storage, so Reagan's nurse will be here for Reagan and Grandpa will be watching Ryan tomorrow! Prayers that they both behave themselves and that we have a safe and uneventful drive!!

Thursday, October 24, 2013

Sensitive girl

Reagan had a good day today. She slept like a rock! Her pump was even going off at one point and she didn't move a muscle! She slept til 11am and probably would have slept later, but we decided to change her diaper because the school OT was supposed to be here at 11:30 (but didn't actually get here til 12:40). Reagan woke up sweet and smiley though, even with us waking her up! She had a good session with the school OT and then had a great session with the private OT later in the afternoon! She was nice and calm all day but she was a bit sensitive (to mommy talking and brother yelling) toward the end of the day. There were several times where she got the fat lip and tears in her eyes, but we were able to distract her and get her calm before the tears started flowing! Tonight she hung out with mommy and we just kept it calm and quiet (while brother was sleeping and Daddy was snoring on the couch)! Not sure why she was so sensitive, but hopefully she's OK tomorrow!

Wednesday, October 23, 2013

Spunky

Hello? Is anyone there? I posted some beautiful pics of my girl yesterday and no comments?? Come on people, this girl is a cutie (and I'm not just saying that because I'm her mother)! :) Reagan slept well again last night, but she did need a little clonidine to help her settle down. She woke up happy today though, so that's always a good thing! She had a busy day of therapy today. PT this morning (where we realized that her stander needs to be adjusted because she's grown too much), speech, & then "school". She did great with it all! She was pretty vocal today and every now and then she'd let out a high pitched squeal just to keep us on our toes! She's a spunky girl!!

Tuesday, October 22, 2013

Sweet girl

Reagan slept well last night and woke up this morning a sweet girl. She's still not smiling much, she'll give me the occasional laugh in response to some silly noise I make, but in general she's just calm and content. I'll take it. I'm just happy to see such a quick turn around again! Love that she's back to good days. Looking forward to taking her outside for a walk and just enjoying my sweet girl! Speaking of, I got the edited pics back from our photo shoot! There are some super cute ones of Reagan, but the family shots are not my favorite (or anything with me in them). Definitely not as good as our photographer back in Houston, but still nice to have some updated shots of my beautiful girl!












Monday, October 21, 2013

Much better

Reagan slept very well last night, when Mike laid her down, she was OUT! She slept in a little (again) this morning, but woke up in a much better mood today. Much better! She was still a little tense this morning but she seemed to mellow out as the day went on. She did have one little period of fussiness tonight, but after I helped her go to the bathroom, she seemed much relieved! She even gave me some laughs today! I'm hoping for an even better day tomorrow! Thank you for keeping our girl in your prayers!!

Sunday, October 20, 2013

All good things must come to an end

Reagan slept well last night and slept in a little this morning...but she did NOT wake up happy! Today was definitely a bad day for my girl. But on a good note, it was a fairly mild bad day, as far as bad days go. She started off at her worst...crying a lot and just all around miserable. She fell back asleep but woke back up crying again. Then she took a good long nap this afternoon and when she woke up she was still agitated (and didn't want to be messed with), but she was quiet. This was her mood for the rest of the night. I did get a couple laughs out of her, but they were agitated laughs! She did finally doze off on her own, so I'm hoping she'll stay asleep and wake up feeling much better tomorrow! Please keep her in your prayers! Below is a preview of our Halloween decorations...still lots more to do, but we're getting there!



Saturday, October 19, 2013

A Halloween miracle!

Reagan pulled off a "Halloween miracle" today!! After the fussing at bedtime and waking up multiple times last night whining, we just knew for sure today was going to be a bad day! But when she woke this morning, and she had a smile on her face, we knew she was going to pull through! She actually had a really good day today. She was tense (there's no doubt about that), but she was good. We made the executive decision to leave her at home with the nurse, and we took her brother to a "pumpkin festival" with Mike's parents. That was definitely the right decision! It was WAY too cold for her and there really wasn't a lot to do! Ryan was happy just sitting on pumpkins, playing with hay, and sitting in the grass! Grandma drove in and got to spend some one on one time with Reagan while we were gone! They even went for a walk in her new all terrain stroller (the one we got months and months ago but hadn't opened because we knew we were moving)! Anyway, Reagan pulled through and had a really great day. She did get a little more agitated as the night went on (seemed to be annoyed with talking), but she was also having a lot of gas and getting sleepy, so who knows. It's almost been two weeks since her last bad day...that's the longest good stretch she's had of late! I'm wondering if it's the fact that I've been "helping" her go to the bathroom when it's been a day or two. I still think there are tummy pains/issues at the root of her "bad days"...Please continue to keep her in your prayers!!











Friday, October 18, 2013

Tense but smiling

Well I'm assuming since no one chimed in, that no one has any experience with Lyrica? The more I read and look into it, the more apprehensive I am to try it! It's like those commercials where they start naming off all of the side effects of a drug, most of which are way more serious than what the drug was supposed to treat in the first place!! I don't know, the doctor thinks we should try it, but at the same time, he can't guarantee it won't affect her seizure control. Decisions, decisions. Im leaning toward not trying it. Reagan did finally fall asleep and had a good night last night! And when she woke up this morning smiling, I was SO relieved!! She had a good day today. She was still tense and sensitive to talking (and her brother), but she kept smiling! She had a busy therapy day with PT, Speech, and OT. She did really well with them all! Mike's parents came to visit tonight, so we are happy she held on and continued having good days! She's pretty kicky/fidgety tonight, so who knows how much longer the good days will stick around. Hopefully they will continue since my mom is supposed to come in tomorrow!! Please keep our girl in your prayers!

Thursday, October 17, 2013

Thoughts on Lyrica?

Reagan had another good day today. She slept well last night and woke up smiling again! She has been noticeably more tense (in her body) today. Lots of chorea, nonstop "crunching", fingers shoved in her mouth...but still all smiles! She had another busy therapy day with OT/vision in the am and then OT and "school" in the pm! She did great with everything! Then tonight she wasn't really winding down and getting sleepy, so I tried Lortab (for fear of what clonidine might do to her). Well, if anything she just got more crazy! So we did have to resort to clonidine, which eventually did seem to help her fall asleep (I wonder if the two are somehow working synergistically). I still haven't tried the Lyrica yet. I'm nervous to start yet another neuro/seizure sort of med. I know it could potentially help with her sleep issues/bad days, but it still makes me nervous! Anyone have any input on Lyrica??

Wednesday, October 16, 2013

Sleepy rainy day

Reagan did finally settle down and sleep last night and she woke in a good mood again today, so that was great news! She was a little groggy this morning, dozing off and on...but it was a rainy day, so who could blame her! Her PT canceled and then she slept through speech, but she did wake back up this afternoon and she was nice and awake when her teacher came. This afternoon she seemed a little more tense. Chewing on her hands nonstop (shoving them way too far down her throat at times)! She was still smiley, just not quite as relaxed as the rest of the day. It's after 11pm and she hasn't really shown any signs of getting sleepy. Daddy is going to try to lay down with her to see if she'll doze off on her own. I'm not even attempting to try clonidine again and I haven't filled her Lyrica prescription, so we don't have many options! Praying my sweet girl can get some sleep tonight!

Tuesday, October 15, 2013

Great day

Today was a GREAT day for my girl!!! She really turned it around today! After the day she had yesterday, my expectations were low, but she really outdid herself! She woke up smiling this morning and has been smiling ever since! So sweet and so wonderful...not at all sensitive like the day before! We went to her neurologist appt this afternoon. He had finally gotten her last EEG results from Houston (back in February). He said, and I quote, that her EEG looked "REALLY good"! Our previous Neuro said the same thing, but to hear it from him as well, that meant a lot! We also discussed trying Lyrica. He wonders if these "episodes" Reagan has might be migraine related. And even if they're not, it may help with her sleep! Clonidine is pretty much a no go now! I tried it again last night and it made her completely crazy in less than 10 minutes! I had to give her Lortab to counter it. So maybe it's worth a shot trying the Lyrica? We are also still in talks about starting her on a relaxed version of the ketogenic diet (1:1 or 2:1), but that appt isn't until the first week of Nov...so we'll see how the Lyrica goes first! Thank you for keeping our girl in your prayers!! Prayer works! To go from nonstop seizures to an almost normal EEG four years later, pretty miraculous!

Monday, October 14, 2013

Tense and tears

Reagan slept well last night but woke fussing again this morning. Daddy was able to get her back to sleep, and she even slept in a bit this morning, but the smiles are completely gone! Vanished. She's been a lot more serious, tense, and on edge today. Speech therapy didn't go so well so we decided to cancel "school' for the same reason. She has been moved to tears several times today and she's been borderline tears 3x as often. Something is definitely bothering her (and it's not just her brother). Her last bowel movement was Friday, so GI pain is a likely cause. Her last "bad day" was last Tuesday, so we're a little early for a bad day, but who knows. She's got a follow up appt scheduled tomorrow with her new neurologist, so I'm hoping she'll hold it together! Taking her to an appt screaming with her brother in tow (even with the help of a nurse, albeit a new nurse), will be unbearable!  I gave her a dose of Lortab tonight and it seems to have taken the edge off, but she's still just SO tense! Lots of chorea, kicking nonstop, hands in her hair, sweating her back wet...not good.  Please keep her in your prayers.

PS...today would have been Bear's 10th birthday! I'm still missing my dog! :(
On my birthday last year...we both have birthdays on the 14th!

Sunday, October 13, 2013

Sweet girl, fussy boy

Reagan slept pretty well last night. She did cry out a couple times early this morning...the first time, she was back asleep before we could even get to her room...the second time, lasted a little longer but then she had a lot of gas and fell back to sleep when Daddy laid down with her. I wasn't sure what to make of it and I admit, I was a little worried for how she might wake up. She slept in a little and when she did wake up, she was fussing at first, but she settled down and actually had a really good day today! She's been laid back and sweet today...very similar to yesterday! Her brother, on the other hand, has been a bit on the crazy side...he's had several meltdowns today. Tonight he was really acting up and I think Reagan was getting a little sick of it. She never fussed or anything, but she was definitely getting more tense (chewing on her hands and sweating a lot). I'm hoping she'll sleep well and have another good day for us tomorrow!!

Saturday, October 12, 2013

Cuddly and sweet

Late post again!! No worries though, Reagan had a great day today! She slept in a little and woke up sweet and smiley! She was very laid back today. Super cuddly. It was funny, as laid back as she was, every now and then she'd let out a high pitched squeal...as if to say, HEY, pay attention to me!! She's a piece of work! Love that girl! Hoping for more great days to come!

Friday, October 11, 2013

Busy day

Reagan spent the night in her chair. I was too worried to lay her back down and risk her throwing up again and aspirating. She slept fairly well, although she was restless at times. She woke up feeling better but was still a bit mouthy. I went ahead and scheduled an abdominal ultrasound just in case the nausea persisted (but later cancelled it because the nausea was gone)! Eventually we'll get that ultrasound for the new GI doc! I'm glad she was feeling better though...She was even giving us some laughs! (She had another huge diaper, so she probably felt better after that!) She had a busy day of therapies...PT, speech, & OT, followed by a visit from her new home bound teacher!! Busy, busy! She did great with it all. Tonight she was sweet but a little kooky. Mike tried laying her down in bed but she was not going for it. I gave her a dose of clonidine hoping it would help her to fall asleep and it did the opposite! She started to freak out and was borderline tears. I gave her some Lortab and finally she began to settle down and fell asleep! Whew! Praying for a good night's sleep and a relaxing weekend for us all!

Thursday, October 10, 2013

Sweet, poopy, & nauseous (oh my)!

Reagan slept well last night and woke up this morning a sweet girl. She's still having lots of chorea (mixed in with periods of fatigue) and still showing signs of nausea (I forgot to mention that she was making lots of mouth movements yesterday that looked gaggy). She did great for OT this afternoon but she did have a huge liquidy diaper that cut her visit short! She HAD to feel better after that! Then tonight she was looking a little gaggy to me again (and she was a little spitty) and then POW...two huge throw ups! Poor girl. She held it in for as long as she could! She was wiped after that and fell asleep! We did try her on her side in her bed first, but now she's upright in her chair. Hopefully she'll sleep through and wake up minus the nausea tomorrow!

Wednesday, October 9, 2013

So much better!

Reagan slept fairly well last night. She woke up once crying, but fell back to sleep fairly quickly thanks to clonidine. When she woke up this morning, she fussed a little and didn't want to be messed with, but she wasn't crying (which was improvement in and of itself). And she just got better as the day went on. She had three therapies today and she tolerated them fairly well...she was actually falling asleep during her last one! She did NOT enjoy her bath this afternoon, but I think whacking her foot on the bath tub was partially responsible for that! Tonight she was a bit excitable...she would go from being completely laid back and mellow to having bursts of energy where she'd kick around like crazy. Crazy chorea! She eventually dozed off on her own, so I'm hoping she'll sleep well tonight! Thank you for keeping her in your prayers! She had a quick recovery this time around for which we are very thankful!!!

Tuesday, October 8, 2013

Bad day

Reagan slept well last night but woke up crying this morning and has been crying ever since! Today is definitely the bad day we were hoping to avoid! Nothing seems to be working. We've tried the usual...Lortab, clonidine, and Ibuprofen...none of them seem to make a dent in her pain. She has been dozing off and on, so that's giving her a little relief, but other than that she's been pretty miserable! I still think this is all GI related (for the most part anyway). She has been clenching in poops for days now and I'm afraid it's finally caught up to her! I still think there's a lot we need to do with GI, and then we're still in talks to start the ketogenic diet. We've got a follow up appt next week with neurology and we're supposed to have a care conference between all of Reagan's doctors soon but they can't do that until everyone sees her (the one she hasn't seen yet is the geneticist/metabolic specialist...who is actually kind of important to this puzzle). We're not scheduled to see him til the end of the month. :( So frustrating! I want help NOW for her! So sick of waiting...please keep her in your prayers!!

Monday, October 7, 2013

Still OK

I'm so sick of this app! Another half typed post...gone! The problem is when you type in blogger, it automatically saves every 30sec or so, but when you type in the blogger app it doesn't save unless you click save as draft!! So if Ryan grabs my phone and exits to one of his apps (which he did), it deletes my entire post!! So frustrating! Anywho...it's another late post! Reagan had a super restless night last night! She kept waking up crying, over and over again!! So needless to say, I'm exhausted today from getting up and down all night long!! After the night she had, I just knew she had gone over to the dark side (ie "bad days"), but she actually woke up OK! She was tense and a bit sensitive, but OK! She only had one therapy today, speech, so her therapist just kept it calm and she did fine with it! I had to get over to her new school for a temporary ARD, so they can get her homebound services up and running. Everyone seemed very nice, although this school isn't equipped to deal with someone with "such severe disabilities" whatever that means! She won't be getting services in the school anyway, so it doesn't really matter! (But I kinda wanted to say, she COULD attend this school if we wanted! She does have her own nurse!! But whatever!) Anyway, they basically just accepted her previous ARD as is and we'll have to meet again in less than 30 days for a real ARD (oh fun)! Not much else going on here. Trying to unpack a couple boxes a day and attempting to organize things...but something tells me it's going to be a long time before we have any sense of order in this house!! Still need to buy lots of furniture, but I'm so indecisive, that's going to take a while as well! Please keep our girl in your prayers...

Sunday, October 6, 2013

Darling

I'm so sick of this blogger app!! I just typed an entire post again, only to have it deleted when I exited out of the app for a second to look for a picture!! Ugh! So frustrating! Reagan slept well last night and actually ended up having another pretty good day today! She's been sweet and cuddly, yet still slightly on edge at times. She's been very attentive though, today Grandma was asking her touch a specific toy and she did it over and over again! If you ask her to lift up her head (or to take her hands out of her hair, like her therapist did last week), she'll do it! It may take her a little extra time and she may have to concentrate very hard, but she can do it!! Such a darling girl! I don't think we give her enough credit!! Praying for continued good days for my girl!

Saturday, October 5, 2013

Hanging in there!

Late post here...Reagan had a good day today. We were a little nervous as to where she might be headed, but she's really hanging in there! Her body is tense and she's got cold clammy feet and she has the occasional frustrated vocalization...but otherwise she's been OK. Grandma is here, so she's got to be happy about that! We weren't really expecting a visit so soon (we just saw here in Mexico not even a week ago), but we were pleasantly surprised as we have lots of boxes to unpack and Grandma is an organizer (and we are not)! The weather took a turn for fall today, it seems that we may not be able to use our pool until the summer! We definitely need a heater for it, but I just don't think that's something we can afford at this point in time. Until then she's got to settle for warm baths with Grandma, which tonight really seemed to relax her! Hoping for a good night's sleep and sweet dreams for my little princess (in her sleepsafe bed which Daddy finally put together for her)!!

Friday, October 4, 2013

A bit kooky

Reagan slept OK. She woke around 4am and was kicking and squirming around! She did finally doze back off and slept in a little. She woke up just in time for PT and then had speech shortly thereafter. She took another little nap and then woke up just before OT. She was a little kooky and vocal during OT, but she managed to hold it together. The craziness carried over to tonight. She had a big dirty diaper, so maybe that's part of it, but there's no doubt she's on edge. Praying she can get some sleep tonight and wake up on the right side of the bed tomorrow!

Thursday, October 3, 2013

So tired!!!

It's been a sleepy day for my girl! She was a bit restless last night, she woke two different times fussing (so we were a bit worried how she might wake up today)! She woke fine though, a little tense, but fine. She was a sweet, smiley girl. We loaded up in the car at 9:30am to head to her ophthalmology appt and both kiddos fell asleep on the way there! Ryan woke up as soon as we got there, Reagan, on the other hand, slept through her entire eye exam!! Afterward we decided to just go straight over to get her GJ tube replaced (no time to rush home). She slept through that as well!!! She did finally wake up around 5 pm, just long enough for us to give her a bath!! Sweet girl! Hoping she sleeps tonight and wakes happy tomorrow!

Wednesday, October 2, 2013

Spunky girl

Reagan did not sleep much (if any) last night. She was up laughing and carrying on! She's been such a wonderful girl today. So sweet and so smiley! She had PT and speech today and she did SO well for both of them! Her head control was great today. She could sit up with very little assistance. She also enjoyed rolling around! She kept rolling from one side to another (and sometimes all the way over and onto her face)...she was a spunky girl today! Her hands and feet are still cool and clammy though...so I'm not sure what the next few days hold. I'm hoping she hangs in at least until tomorrow! She's got an ophthalmology appt in the morning and she's scheduled to have her tube changed out at 1pm and then OT in the afternoon! Busy day! Hopefully she's able to get some sleep tonight! Me too! So tired!

Tuesday, October 1, 2013

Tube drama

Today has been a rough one! Let me rephrase that...TONIGHT has been a rough one! Reagan had a good day. She slept OK, and she and her brother were up and at em before 7am! She only had one therapy today, OT, but she did great for that and her therapist helped loosen her up after a week of no stretching! Reagan's hands and feet are a bit clammy, but I'm hoping that has no significance, otherwise she's been good. I've got SO much laundry to do! We already had some laundry piled up as a result of moving, but after a week of vacation, I may NEVER finish it all! And so many boxes and junk piled up everywhere! Ugh, what a mess! I hate moving! Now, about tonight's drama. Reagan has this one vitamin, Alpha Lipoic Acid, it's a antioxidant that the mitochondrial doctor from Atlanta suggested. I ordered it from an online pharmacy (swanson) in capsule form and I just open them up and resuspend them in water. Problem is, they don't want to resuspend. I've had issues in the past with this vitamin clogging her tube, but it seems since we've switched to Compleat (the blenderized formula) it's happening more frequently! I'm guessing it's because Compleat has the tendency to deposit on the inside of her tube and not move (thereby making it more likely for other things to clog it). Well, last night Reagan was not wanting to fall asleep. She was laughy and kicky and I was finishing up with her medicines and contemplating giving her clonidine (but hesistant after what happened the night before). The last thing I needed to give her was the Alpha Lipoic Acid. I pushed it in and breathed a sign of relief that it went in without a problem, but as I attempted to flush it with water, I realized it was CLOGGED!!! Oh noooooooo!!! The scary thing is, if her tube clogs and we can't unclog it, she can't take her medicines, she can't eat/drink, nothing!! And you can't change out a gj tube at home (like you can a g tube), you have to go into the hospital so they can use an x-ray to feed it into the right place in her intestine! And the hospital, may or may not even have the correct size tube! (Texas Children's never kept it in stock, they'd have to order it overnight!) Anywho...it clogged! BIGTIME!! We tried everything we could to get it unstuck! A big 60ml syringe of warm water and man pressure...nothing! Pushing, pulling, pushing, pulling...nothing! We filled her tube with warm coke and then tried to push it through with a 60ml syringe...nothing! Actually, not nothing! A couple times the inside circle of the tube (the white portion that contains the hole/lock) popped OUT because of all the pressure!! Thankfully, Mike was able to push it back in or we would have been headed to the hospital last night. Finally, I just figured we would have to leave first thing in the morning to go to the hospital and have a new tube put in! That would mean no food/water all night and no am medicines until we had a new tube. Not good. But Mike decided to give it one more shot with the coke and thank God he did! He unclogged it!!! Whew! Crisis averted! We do have a bit of a damaged tube, the center did pop out multiple times (so I will still be calling them tomorrow morning to schedule a tube change), but it's no longer an emergency and we'll still be able to feed/medicate her until then! What a mess! What I do know for sure...absolutely NO more Alpha Lipoic Acid. Nada. I don't know if it was doing anything, but I just can't take the risk that it will compromise her tube again. Time for bed at 1:30am...