Wednesday, March 31, 2010

Immunology appt

Reagan has been in good spirits again today. Last night she did sleep much better than previous nights, so that was good for all of us. We actually woke her up at 8am when we had to leave for her appt with the immunologist. Turns out, she's an allergist/immunologist. I'm not sure why I never thought about that but obviously the two are related. We were super lucky and got put into a room very quickly. We sat in there for a while, but I didn't mind, I was just glad we weren't stuck in the waiting room. As we were waiting we realized that Reagan's rash had gotten much worse! Her back was covered but it was also spreading down to her bottom and onto her face! Thankfully this was the place to be with a rash and immediately the doctor agreed with the pediatrician's phone diagnosis of roseola. It's usually seen in kids younger than Reagan but it's pretty obvious that she's younger than her years. I really liked the immunologist. She's a researcher not just an MD and she told me of her future studies to look into the link between mitochondrial disease and a suppressed immune system. What's interesting is that apparently no one has ever studied this, even though it's obvious many kids with mito have a poorly functioning immune system. I think she liked the idea that my Ph.D. is in Immunology and she spoke a little more freely to me about her work. I joked with her about giving me a job but seriously my hands are a little full right now. She wants to try Reagan on Zyrtec. She thinks the wiping/rubbing at her nose may be due to allergies. I wouldn't be surprised...I have horrible allergies. We're going to try it for a week and see what happens. She also took tons of blood for all kinds of allergy/immune function tests. Should be interesting to see what they find out. Reagan's IgG levels were taken about a month ago and were half of what they should be. Not good. No wonder she's getting sick so much. The doctor definitely thinks it's related to her mitochondrial disorder but the tests she ordered should give her more information on all of this. So despite getting poked and prodded first thing in the morning Reagan has been in a wonderful mood today. Very sweet and giggly again and she's laughing at appropriate times which is even more exciting! She's still really gurgly today. Not sure what that's about...I'm hoping it will pass. This afternoon she did have a low grade fever again (I thought we were over that) and the rash had faded and was barely there anymore. Come on girl...get healthy already!


Tuesday, March 30, 2010

Viral

Reagan has been a doll today...very sweet and smiley. I'm so glad that she finally seems to be feeling a little better. She's still not sleeping very well...most nights she wakes mid morning (3am last night) and we end up putting her in bed with us. She really likes sleeping beside her Daddy...Mommy not so much (I think it's Daddy's loud, rhythmic breathing). She's been extremely gurgly today. Lots of spit just sitting there in the back of her throat. She coughs every now and then but never really clears it. It's driving me crazy! If I could just get her to swallow already!!! I find myself clearing my throat constantly as if she'll pick up on what I'm doing and follow suit. No such luck. I think some of it may be sinus drainage. My allergies have been horrible today, so that wouldn't surprise me if she's feeling it too. The fever has been absent all day but this afternoon we noticed little red spots all over her back. My first thought was chicken pox, but the spots aren't raised at all and I remember hearing that kids sometimes get rashes with viruses. I spoke to the pediatrician who said it sounds like roseola (a virus), she also mentioned Reagan's bloodwork came back and looked indicative of a viral infection...so that all kind of makes sense. The good news is that they were able to talk the immunologist into fitting her in for an appt tomorrow morning (instead of late June). Well we don't actually have an "appt", they are just going to squeeze us in at some point so it could be a long day. This is another doctor that has come highly recommended so I'm hoping she might be able to give us some insight as to why we just can't seem to get Reagan healthy lately! Please continue to keep her in your prayers...

Monday, March 29, 2010

Giggly

We'll start off with an interesting little story. Yesterday I noticed Reagan's tummy was looking a little distended. She had several wet diapers so that obviously wasn't the problem but she hadn't had a dirty diaper in a few days. So I upped her Miralax and then finally last night she produced. She slept well and woke up this morning with the giggles. I picked her up and she had some gas that really was cracking her up. I put her in bed with Mike where the gas turned into something more. By the time I picked her back up it was too late. Everything was covered. Reagan's clothes, her feeding tube, the backpack that holds her pump, her pants, her shirt, our sheets, our comforter...you get the picture. It was a complete and total mess!!! I spent the whole morning cleaning it all up! At least she was in good spirits! She definitely seemed to be feeling better and her fever was gone as well. Even though she seemed improved, we decided to go ahead and make the trip into the pediatrician's office this afternoon. While we were there the fever returned. Thankfully I had brought the Tylenol with me so I gave her a dose right away. The doctor checked everything again...ears looked fine but she described her throat as "raw". She swabbed her throat and sent it for culture, cathed her for a urine specimen to send off for urinalysis and culture, and we took her to the lab for blood...hopefully we'll finally get to the bottom of what's going on with one of these tests. The doctor gave us a different antibiotic to start her on, so we'll see if that helps. From there we went to the orthotic place to get her casted for new AFOs (ankle braces). We've been trying to be better about putting her in the stander lately but it's not going to do much good unless she's bearing weight through her feet properly. These will help to get her feet properly aligned and keep them that way. She was great for the casting and we were in and out of there fairly quickly. She's been a real sweetie all day today. Very giggly and smiley...so maybe she really did have a virus and she's slowly getting over it. One thing I know for sure...I'm sick of her being sick all the time. Her pediatrician said she's going to do her best to get our appt with the immunologist moved up. We've just got to get to the bottom of why she's getting sick every other week now. Please continue to keep her in your prayers!!!

Sunday, March 28, 2010

Relentless fever

So things seem to be getting worse here rather than better. Reagan woke up this morning with a very high fever (104.3). She was burning up and just plain miserable. She was also shaking/trembling in a way that looked way too seizure-ish for my liking. We've been giving her Tylenol every 4hrs today and her fever has never really gone down below 101. I spoke with the pediatrician on call and she thinks we should bring her back in tomorrow...so they can check her again to see if anything has progressed (to the point where they can identify what's causing this). I hate dragging her back to that germ infested place but I don't know what else to do! I thought for sure she would be feeling better by now! Not so. She threw up twice today...once when she first woke up this morning and once tonight. She's super spitty and not managing it well at all. It's hard to tell if she's throwing up because she's sick or if she's just choking on her spit and then gagging. I'm super paranoid about tonight...I'm worried about her choking but also very concerned about the fever situation. I think I'm going to set my alarm to get up every 4hrs to keep her on a steady dose of Tylenol. The morning seems to be her time of choice for spiking a temp, so I want to keep her medicated. Please continue to keep her in your prayers...she certainly needs them.

Saturday, March 27, 2010

Still sick

Reagan is still feeling under the weather today. This morning I thought maybe she was feeling better, because we did get quite a few giggles out of her but as the day went on the crankies came back and you could just tell she did not feel well. She's still very restless. She's sleepy but it's hard for her to stay asleep. The fever was back too. There was less crying than yesterday, but lots of high pitched whining took it's place. I sure hope she kicks this soon! Our patience is wearing thin! Please continue to keep her in your prayers.

Friday, March 26, 2010

Lousy day

Reagan woke up last night around 3am (right around the time Mike had to get up to leave for his day trip to Plano...5hrs away). She was very fussy so we put her in our bed and eventually she did settle down and go back to sleep. She was super restless though. She'd fuss and move her arms around every 15min or so and I'd have to hold her arms down and shush her back to sleep. She woke for good around 7am and was just as upset as last night. Lots of screaming and crying. She spiked a fever this morning to 102.8, but a quick dose of Tylenol brought it back down. She also sounds a little hoarse today, but I'm not sure if that's because she's getting sick or if it's just a side effect from all the crying! The crying has been literally every waking moment today. If she's awake, she's crying. Thankfully she's still very sleepy so at least there have been a few quiet moments. She's definitely miserable. We took her into the pediatrician's office this afternoon, hoping to find something easy like an ear infection or strep throat. No such luck. Everything was negative. The doctor said the virus of the week seems to involve losing your voice...so maybe that's it? Could she have picked up something at her birthday party? A lovely present. I'm skeptical though, because she was already super drowsy the week before. Who knows. Nobody knows with this girl. That's the hardest thing. Not knowing what is hurting her. Stressful to say the least. Please keep her in your prayers this weekend!!!!!!

Thursday, March 25, 2010

Not so happy

I knew the honeymoon had to end sometime...looks like today was the day. Reagan woke up this morning in a horrendous mood. Screaming and crying, nothing was making her happy. She had a little gas, so we're chalking it up to tummy pains, but who knows! After about 2.5hrs of crying it seemed she had gotten it out of her system. Then she was fine! She had PT here at home and gave her therapist some more smiles and giggles. Even her head control seemed improved (of course I think that's due to her overall tone being increased but whatever). Then we went to feeding therapy where she tried some bananas. Not real bananas but baby food bananas...just a little, but this is the most "food" she's taken in since the g-tube. She seemed to tolerate it just fine. No gaggy faces, if anything she was smiling at the idea of eating! That's certainly promising. Then we came home where she continued to be in good spirits. She was a little sleepy and took a small catnap until the dog barked and woke her up! The guy from the seating company brought over a different stander for Reagan to try. It's the stander that matches her Leckey Squiggles positioning chair (which we love). Personally I think this one fits her better than the tumbleforms one we have right now...but I want her PT to see her in it next week to get her opinion. Then I left her with Mike to go have dinner with the women from our Bible study group. We had a good time...unfortunately that was not the case with Mike and Reagan. I called as I was heading back home and Reagan was big time upset. Just like this morning, inconsolable and crying nonstop! I got home and could hear her before I even opened the door! Puffy red eyes, tears streaming down her face, she was NOT happy! Finally I think she wore herself out and fell asleep. Poor thing. We haven't seen this side of her in a while. I want my happy girl back. Please say a few extra prayers for her tonight!

Wednesday, March 24, 2010

VCUG

Reagan has been as good as gold again today. She had her VCUG today...voiding cystourethrogram. It's a procedure to check to see if the bladder is fully emptying in addition to checking for reverse flow (or reflux) of urine back into the kidneys...the urologist ordered this since Reagan has been retaining her urine so much lately. She'll hold it one day and only have one wet diaper all day long and then the next day she'll turn it around and have 9 wet diapers!! This girl! Anyway, all went well. I was a little weak in the knees when I saw the catheter they were using. Definitely a little bigger than I had thought! It's the same exact tube we used for the ng-tube (tube up the nose for feeding). Reagan was perfect and didn't even fuss once (I think they were all a little surprised by that). They filled her bladder with the dye and then took lots of pictures with the X-ray. As soon as they finished up the doctor immediately said "No reflux...everything looks normal". Good. Still no clue as to why she's holding it, but I'm glad everything looked fine. She was in a great mood most of the day today, giggling and smiling all day long...that is until we tried to put her in bed at 11:30pm. That's when the crying started...she wasn't having it. I calmed her down but she was very restless. She'd fall asleep and then jolt herself awake. Fall back to sleep, then bam, awake again. Off and on for quite sometime. I just finally laid her back in her bed with a weighted blanket over her. Hopefully that will help to settle down whatever it is causing her to jump like that.

Tuesday, March 23, 2010

First day of school (sort of)

Reagan has been a sweetheart again today. Good thing too because she had one jam packed schedule! This morning was her first appt with her homebound teacher. She surprised us and showed up with both the PT and the OT. It was a little chaotic having three people working with her all at once. First they put her in her stander where she kept her eyes nearly closed the entire time. Then they put her in her positioning chair and the eyes opened wide and they were finally able to get her to interact a little more. She had an hour and a half break and then the vision teacher came over. Then she had an hour break before her PT showed up. Starting this week she'll finally be getting PT twice a week, so that will be nice. The head control was definitely lacking but that's certainly been the case lately with her being so groggy. She worked on rolling with Reagan and that actually went pretty well. She even got a giggle out of her. What I like about this therapist is that she really thinks Reagan has the potential to do all of these things...it's just a matter of getting her to use what she's got! So after all that therapy today we spent most of the night relaxing and snuggling...she's quite the cuddle bug! Hopefully this content mood continues...tomorrow morning she's got that urinary procedure (VCUG). Please keep her in your prayers...anything involving a catheter does not sound like fun!

Monday, March 22, 2010

Sweetie

Reagan has been such a sweetie today! She slept in this morning a little...not waking until around 9:45 ish. Well she did wake up a couple of times but she fell back to sleep just fine in our bed! She was still on the sleepy side most of the day. I spoke with her pediatrician about it and she suggested maybe decreasing the risperidone down to 1x a day for a week to see if that helps. The mitochondrial doctor put her on it to help with the chorea movements, but I haven't seen much if any improvement since she started it. It seems those movements just come and go as they please (the last couple days they've really decreased). So we may try decreasing it tomorrow. Reagan had back to back therapies this morning, OT and then Feeding therapy. She was very cooperative for both but seriously lacking in energy. Tonight she finally perked up. She was much more alert and surprisingly giggly! So sweet. I just want to squeeze her! Too bad she wasn't like this yesterday!

Sunday, March 21, 2010

Birthday girl

What a day! It was hectic to say the least. Who thought making and icing our own cupcakes was a good idea? All 140 of them (half were mini cupcakes)! Granted my mom did most of the work, but we were all scrambling down to the second when people started knocking on the door. We had 58 people total (24 kids)...that's a house full thanks to the unseasonably cold, windy weather outside. It rained all day yesterday so I guess we should consider ourselves lucky that we didn't have to deal with rain too! Reagan was sleepy but content. No crying for Mommy today, so that was good. She LOVED it when everyone sang Happy Birthday to her! It really perked her up! All in all I think it went really well. One problem with having that many people over is you feel like you only get 2-3 seconds with each of them. All these people that love and pray for Reagan, coming over to show their support, we are truly blessed! Reagan got all kinds of great gifts and plenty of money to buy anything she could ever want or need. One gift in particular took my breath away. It came in the form of a book made by our Bible study group filled with some of my favorite pics of Reagan with Bible verses beneath each. Titled "Praying for Reagan". Awesome. Truly awesome. I was in tears! I only wish I had opened it while everyone was here so they could have seen it. It was a great day. I'm exhausted but so glad we went all out for Reagan's 3rd! She deserves it. She's such an angel and I am so thankful for each day (and year) we have with her!






Saturday, March 20, 2010

Stinker

OK...so I'm a little late with this one. It's after midnight and I'm just sitting down to write Saturday's post. Lots of cooking and cleaning today...getting ready for Reagan's birthday bash tomorrow (or today really)! Unfortunately the birthday girl is not at her best. She's been quite the stinker today. To me, that is. She would break out into tears every single time I picked her up today. I'd like to think she's just trying to communicate to me how lousy she feels, but I'm afraid she's just plain mad at me. For what, I have no clue. Things started off well enough this morning. She slept well last night and actually woke up this morning. She was still sleepy today, but nothing compared to yesterday. I'm holding out hope that she's going to recoup tonight and be the happy, sweet girl we know and love tomorrow! Lots of prayers needed to make that happen! Gotta go clean some more...

Friday, March 19, 2010

Too much sleep?

Last night Reagan finally slept! When I put her in bed she was wide awake but at some point she did fall asleep (we don't know when that happened because we crashed immediately). And she slept. And slept. And slept. She woke up for about 30min around 11am...didn't really open her eyes much and cried a lot. I thought maybe her tummy was hurting her since it's been 4 days since her last dirty diaper so I gave the pedialax a try. No luck. Nothing happened. She fell back to sleep and proceeded to sleep the entire day. I figured between the crazy movements she's been doing and staying up for 36hrs straight, maybe she just needed to catch up on her sleep. Finally around 6pm I really started trying to wake her up. She would move around, cry out, and go back to sleep. We got her to open her eyes a few times, but she was not happy at all and just wanted to go back to sleep. Now that I think about it, she wasn't content and awake at any point of the day. She was either sleeping or crying. Not fun. I am definitely concerned. For her to sleep ALL day long like that, something is not right. Now I'm wondering if maybe she's coming down with something (two days before her birthday). It's so tough having no clue what's wrong. Everything is such a guessing game...for us and the doctors! Please say some extra prayers for her tonight. That she wakes up tomorrow healthy and happy.

Thursday, March 18, 2010

Horrible night

Last night was one horrible night. Reagan refused to go to sleep (literally she didn't sleep a wink all night) and her nausea got progressively worse. She was throwing up, gagging, and retching all night long. It was horrible! I was counting the hours waiting for my helper to get here. Too bad I didn't have even a second to rest during the day or believe me, I would have. I was once again wrapped up in medication dilemmas. Reagan's Banzel was being ordered by a local pharmacy that promised me they could get it. It was supposed to get in on Tuesday but since our insurance wouldn't approve it til Thursday I was waiting til today to go pick it up. I get to the pharmacy this morning and the pharmacist greets me with "I have some bad news". She never got it in and instead of letting me know this on Tuesday, she waited til today when we were completely out of it! OMG, I wanted to kill her! Immediately I broke into tears...does she even have a clue what no seizure medication means to a child who is seizure free for the first time ever?!?!? After many phone calls back and forth to Walgreens and various doctors offices we finally got them to switch the prescription over to the 400mg pills which the pharmacy had in stock. Problem is, it's impossible to cut the pills to the dosage we need (250mg 2x day). I'm still trying to figure that out. I'm just beyond relieved we were able to get some form of Banzel. Reagan's nausea was still going strong this morning but definitely lessened over the course of the day (although she never even attempted to take a nap). She's extremely tense and very difficult to hold, doing the chorea movements almost nonstop. The ice cold, clammy feet are back too. I don't know if this means she's getting sick or what. Hopefully she'll fight it off. She's still taking the preventative Amoxicillin. We need the sweet, happy Reagan for her birthday party this weekend. Please continue to keep her in your prayers.

Wednesday, March 17, 2010

Always something

Last night and this morning we saw a few more of the episodes Reagan was doing last week. I'm still not quite sure what to think of them. It looks seizureish to me but I am able to snap her out of it (which I wouldn't think you could do if it were a seizure). Hopefully it's nothing. Pray it's nothing. Overall Reagan has been in a good mood today...even though she threw up twice and was much more gaggy than usual. It's so weird how that comes in spurts. She'll go a week or two without even a hint of nausea and then pow it hits her again! Speaking of, Reagan was retaining her urine again yesterday. I have NO clue what that's about. Yesterday she only went once...all day long. Last night I stopped her feeds and gave her some Lasix but she didn't go again until early this morning. Poor thing, I know that can't be comfortable. But she's so good through it all. Today she's gone a few more times but she's still not back to normal. Always something. She's got a procedure next week that's supposed to access how her bladder is functioning. It involves a catheter and doesn't sound like fun, but maybe it is necessary after all.

Tuesday, March 16, 2010

Medication woes

I am so sick of dealing with pharmacies, insurance, and doctors offices to get Reagan's medications! Today we had a scary run in with Walgreens. They just attempted to fill her Banzel prescription (of which our insurance company has been denying for days because they said that 30 days is too soon to refill a 30 day prescription) and they are OUT! Not just out, but they don't even have any in their warehouse and have no clue when they'll get it. Maybe a week, maybe a month! Talk about freak out! This is the one medication that we can NOT go without (the one that stopped her seizures)! No other Walgreens have it in stock. I managed to find a small private pharmacy that says they'll have it by tomorrow. I sure hope so! Then if that wasn't enough I had another battle going on about her Nexium prescription. I noticed today that we were out of refills on her presciption. So first thing this morning I call and leave a message telling the doctor's office they need to call in a new prescription. Then later they call me and tell me they've already spoken with the pharmacy and there are still two refills left. That's funny because I'm looking at the box which says NO refills. Ugh. When we were in the hospital, the GI doc who was filling in for her regular GI doc changed her Nexium prescription to the packets that can be dissolved in water and put through her G-tube. That same doctor also doubled her dosage. Now we're out of refills on that and no one seems to know anything about the changes. I went to pick up our refill and we got a bottle of 20mg capsules! Worthless! We can't put sprinkles from capsules through a g-tube! Then I call the office back and speak to the same lady I had spoken to earlier in the morning and she's super snotty telling me I probably should have called about this several days in advance! Yes, I know in all my spare time, sure why not, add that to my list! I forgot that Texas Children's is completely incompetent and takes 5 years to do everything! My fault. So frustrating! So that's been my day. On the phone nonstop with the crazies...and becoming quite crazy myself. Thankfully Reagan has been a good girl today. She slept in super late. She woke up at 4am and Mike put her in bed with us and there she slept. And slept! I had to force her awake at noon! Silly girl!

Monday, March 15, 2010

Hectic day

Reagan has been great today...which is great because if it would have been any other way I would have had a nervous breakdown. I still kind of did. We had a super busy day today with neurology, bloodwork, OT, & then feeding therapy. I was a nervous wreck worrying about how it would all go but in the end it all worked out fine. I threw Reagan into the car at 7am this morning and we hauled butt into the medical center. We were on time...the doctor was not. Finally around 9am we saw the doctor for our 8am appt. She was very nice, although completely unaware of Reagan having an EEG on Friday. Turns out all looked fine on the 20 min EEG. I was surprised to see the word "normal" mentioned in the impression. We've actually never seen the word normal mentioned in describing any of her previous EEGs...so that was definitely a good thing. Then we went down to the lab and we were given the wrong lab slip. So back we went to neurology to get the correct slip...lots of fun. Then when we got back to the lab the technician was just finishing up with a difficult patient...turns out it was Samuel, our little friend who also has mitochondrial disease. Poor kid, they couldn't access his port! Not good. Reagan did great with her blood draw...even laughing through it! Then we rushed over to therapy. In feeding therapy she ate a decent amount of applesauce (for her anyway) and nothing came back up, so that's a good thing! She fought OT a little, but all in all I think she did some good work. Today's mood was much improved compared to yesterday. Actually today's mood was very much like last night. Lots of crazy laughing. But I'll take laughing over crying any day. The rest of this week is going to be less hectic. Most of her therapies have been canceled on account of spring break. Hopefully I'll have some time to clean and prepare for Sunday's birthday party!

Sunday, March 14, 2010

Craziness

Oh what a day! To say Reagan has been a handful would be a serious understatement. I don't know where our sweet girl went! She did not want to go to sleep last night and I was up with her once again past midnight trying to get her to go to sleep. But she slept well...sleeping til 11:15am (10:15 without the time change) when I finally woke her up. She seemed happy enough but that quickly changed to the craziness that was today. She cried and cried and cried. For no particular reason. Nothing would make her happy. We couldn't figure it out, but boy was she upset. She's still whacking herself with that left hand, you basically have to restrain her so she won't poke her eye out. And today she was sticking her tongue out a lot, not sure if that has anything to do with anything, but it is something out of the ordinary. Then this afternoon she started up with the crazy laughing and she'd laugh in between cries. And then she switched over to just the crazy laughing and she's been doing that most of the night. She's still very needy and wants to be held, but at least she's not crying anymore. We've got a super busy day tomorrow with a neurology appt first thing at 8am in the morning and then OT and Feeding therapy to follow. I'm hoping for a better mood tomorrow or it's going to be another really LONG day! Please keep our little one in your prayers!

Saturday, March 13, 2010

Talker

Reagan woke up at 4:45am this morning. I stayed up with her as long as I possibly could and then finally laid her back in bed. She was wide awake but eventually fell back to sleep on her own. Then the little turkey slept in til 10am! She's been in another great mood again today. So sweet and very talkative all day. Saying things that sound almost like sentences! Lots of different sounds and syllables. So cute! She's been full of energy...no naps today. Kicking those legs almost nonstop! If only we could get her up standing on those legs. I'm working on that. I'm trying to get an appt so she can get some new AFOs. I wanted to wait til we could do the casting again but she really needs them now in order to stand properly in her stander. Her right leg is very stubborn. That ankle is the tighter of the two and it also wants to turn out, so she needs that support to hold it in the proper position. Hopefully the AFOs will help with that. We didn't get much done today. I found a leak coming from the ceiling of our bathroom this morning and Mike spent most of the day trying to figure out how to fix it. Hopefully it works and we don't have to call in the pros. That sounds expensive...and we don't need any more expenses! Grandma didn't come in this weekend but Aunt Amber did come by to see Reagan. It's funny because Reagan rarely sees Amber but she still gets excited just hearing her voice over the phone and she was practically giddy today when she came over. She's really getting a cute personality! Such a sweetie!

Friday, March 12, 2010

Short EEG

Reagan has been waking up early lately. I'm not a fan. Staying up past midnight and waking up before 6...not a good combination. I've been exhausted but it doesn't seem to bother her in the least. She's been good as gold lately. This morning we did have a little drama but it had nothing to do with Reagan. Our helper was a no show. No call, no email, nothing. I waited and waited and waited and finally couldn't wait any longer so I forced Mike to go with us to the hospital for Reagan's EEG. This was ordered because of the "episodes" she was having last weekend. The thing is, she probably hasn't done it since Monday and even if she were a 20min EEG probably wouldn't catch it. Seems pretty pointless to me. All the EEGs Reagan has ever had have always been a minimum of 1hr long. Unless someone is having continuous seizures (like Reagan used to have), I can't imagine a 20min EEG catching anything other than the background. Anyway, we managed to get there on time and everything went very smoothly. Reagan would NOT hold still though...I'm not sure how they'll be able to see past all those movements. Monday morning we have an appt with the neurologist, so I guess we'll find out then. Other than the EEG, not much going on today. Reagan fell asleep only minutes before her vision teacher was supposed to be here, so I called and canceled. Next week will have even less therapy since most of her therapists are taking spring break that week. That's good though...maybe I'll actually have some time to prepare for her birthday party! Reagan Leigh is almost three!

Thursday, March 11, 2010

Photoshoot

Reagan has been an absolute doll today. So good. She woke up at 5am bright eyed and laughing up a storm! Seriously, I thought she was going to hyperventilate! She's been great all day today. She did well in her stander this morning and was impressing her PT with her head control this afternoon. Then she took a long nap and we had to force her to wake up for her pictures. She was OUT! Thankfully she woke in a great mood and was all smiles and giggles for her Littlest Heroes photoshoot. I can hardly wait to see these pictures! I think we picked a great photographer and she got some really great shots! We did several outfit changes...no problem. Reagan was great! Then we rounded out the night at Bible study and she was once again an angel. The best behaved kid there! She's such a sweetie!

Wednesday, March 10, 2010

Eye check-up

This morning my little alarm clock woke me up at 6:25am (5 min before I was supposed to get up). She was laughing and smiling up a storm! What a great way to wake up. We got started early on her meds and then loaded up and headed to the med center for her ophthalmology appt. They dilated her eyes to get a better look and (drumroll) everything looks fine. We still have no idea why she's been swatting at her eye but thankfully her lens implant and the rest of her eye looks good. The doctor did write out a new prescription for the glasses she never wears. Apparently Reagan is getting astigmatism like her Daddy. We'll probably get new lenses and then see how she does wearing them for short periods of time, like during vision therapy. Next stop was feeding therapy. She did pretty well. Lots of stretching, tried a bubblegum dum dum, and then some cinnamon applesauce. Then we can home and worked on some OT. Busy day. But Reagan has been wonderful all day long. Tired at times but oh so sweet, happy, giggly, smiley...I wish we would have done pictures today! Speaking of, we're doing the photoshoot tomorrow afternoon so say some extra prayers for a happy, alert girl! I can hardly wait for these pictures. I'm SO excited we're finally doing this! I'll definitely post them on the blog once we get the edited shots (I'm actually planning on using one or more of them on the blog itself). Praying for a beautiful day to capture my beautiful girl!

Tuesday, March 9, 2010

Rain check

Pictures were a no go today. It had nothing to do with Reagan or even the weather really (although it was a little cloudy). Our photographer is getting over a cold and thought it might be best to wait another couple days so there was no chance of her infecting Reagan. So Thursday afternoon is the day. Please keep it in your prayers. We need sun but not too much sun. Reagan happy and opening her eyes. It's going to be a process...our photographer has her work cut out for her. Overall today has been a good day for Reagan. She's been super sweet although she's still a little tired. Speaking of tired, I went to her ARD meeting this morning. That was interesting. So much red tape you could barely see past it. She'll be getting homebound services and they wanted to offer her 1hr of "teaching" per week. Generous, huh. I insisted on them coming out at least twice a week. We'll see how it all goes...I'm skeptical. Services start the week after her birthday. Speaking of, I finally sent out invitations. Her birthday is Sunday March 21st, so we're able to have her party on her actual birth date. I'm hoping for good weather that weekend so we don't have to try to squeeze everyone into our house the whole time. We're planning on having another Easter Egg hunt this year (weather permitting). It was a big hit last year with the kiddos so hopefully it all works out. Tomorrow we've got an early appt with the ophthalmologist, just to get her eyes checked out because she's been rubbing at her left eye so much lately. Please continue to keep her in your prayers...

Monday, March 8, 2010

Sleepy sleepy

Reagan has been super sleepy again today. This morning she woke up with a stinky, wet diaper...I changed her and she fell back asleep in my arms. She woke up about an hour later, was awake for maybe 30min-1hr and then fell back asleep where she slept for several more hours. Even when she's awake, she's not that alert, keeping her eyes half open. I'm glad we've got an eye appt scheduled for Wed just to check that out. I'm not sure what all the sleeping is about. If she's fighting off some sort of sickness, if it's related to those weird episodes she was doing last night, or what. I did talk to her pediatrician about it all and she said if she's sleepy, let her sleep. As long as she doesn't have a fever, there's not too much to be worried about. On the other hand, she is a little worried about the "episodes" (which she did again a few times today). I'm waiting on a call back from neurology to see when we can get her in for an EEG. I'm hesitant, but I'm going to go ahead and post a video of her doing it. I hope it's nothing and in no way seizure related, but again I don't like the looks of it (keep in mind we have gotten her laughing spells on an EEG and they weren't seizure-related but this is a little different than actual laughing). We also found out the results of her ECHO/EKG...normal. Thank goodness. Finally some good news. Although we did find out that her blood ammonia levels are elevated (they want to recheck those) and her IgG levels are low (which would explain why we can't get her healthy lately). We've got an appt scheduled with an immumologist but that's not til the end of June. Tomorrow morning I've got an appt with the school for her ARD meeting. That should be fun. I'm leaving her at home with our helper. In the afternoon we're supposed to do her photoshoot with Erin Golan Photography but I'm afraid that between her not feeling well and the weather, we may have to reschedule. Please keep her in your prayers...most importantly I want her healthy but I also want some good photos of her!

Sunday, March 7, 2010

Something's up

Reagan's been a sweetie again today. She slept well last night and has been good all day. She's still very tense though. I definitely think she's fighting off some sort of sickness. Lots of chorea movements. Wacking herself in the face with that left hand. When we'd had about all we could take, my mom weighted down her arm and she fell asleep watching her Lion King Sing Along video. And there she slept for over FIVE hours! Finally I forced her to wake up, otherwise who knows she may have slept all night! This is very unlike her. She never takes naps...much less a 5hr one. After she woke up she was doing something strange. It's hard to explain but every 15min or so she'd close her eyes and bend slightly at the waist and make and moaning/laughing sound off and on. The episode itself wouldn't last too long but we couldn't always snap her out of it. It was hard to tell if she was doing it because she was in pain or what...but to me it looked eerily like something seizure related. I definitely don't like it. Hopefully it was nothing and we never see it again. Please keep her in your prayers. We need a complete healing for this little one. She deserves some good days!

Saturday, March 6, 2010

Tense

Reagan slept well again last night and woke up in a good mood. She's still doing a lot of the chorea-type movements but more than anything she's just plain tense. Her whole body is tense. It's difficult to even hold her. Hands and feet still very cold and clammy. She also only had one wet diaper all day (another sign that she's fighting some sort of sickness). Finally around 6:45pm I gave her some Lasix and then she had a sopping wet diaper by 8pm. Poor girl, something's not quite right. But all in all she's been really good today. I had a million errands to run and Mike watched her for 4hrs and he said she was "an angel" the whole time. That's good to hear. I always get nervous being gone that long. There were a few times today when she would frown, put her bottom lip out, and then burst into tears...but they cleared up pretty quickly after getting some attention. I think she may have our number. Please continue to keep her in your prayers...we need her well!

Friday, March 5, 2010

Not again...

Finally Reagan slept through the night last night! Well, actually I'm not positive about that. Let me rephrase that...WE slept through the night last night. When Mike checked on Reagan this morning before leaving for work, she was laying there asleep with a pile of covers at her feet. When she wakes up she'll get to kicking those legs and the covers come off...so maybe she did wake up but just didn't cry. Who knows. I'll take it. Unfortunately things haven't been great for her today. We kind of saw it coming on yesterday with the bouts of fussiness, increased movement, and nausea. Today things were worse. Tons of movement. Very fussy (off and on). And a low grade fever (with red hot cheeks and ice cold feet/hands). Since it was a Friday I decided not to take any risks and go ahead and take her in to the pediatrician's office. Ears were fine. Throat a little red, but what's new. They swabbed for everything possible (strep, flu, & RSV) and it all came back negative. They also cathed her for a urine specimen. On first analysis the urine looked clean but they are going to do a culture to see if anything pops up. I was curious how it would even be possible that she could a urinary tract infection when she's been on nonstop antibiotics, but the doctor said that the Augmentin she's on right now would not treat a UTI. So I guess we'll see. I just don't know what to do with this girl. Can we please get her healthy again?!?!? So frustrating! Please keep our little one in your prayers!

Thursday, March 4, 2010

Genetics update

Things here are exactly the same. Reagan's not sleeping well, she's spunky and full of giggles all day (except a couple periods of unexplained fussiness), and she's still very nauseous and threw up a good amount tonight. I thought I would take this time to go over the state of the union with Reagan's genetic testing. After her muscle biopsy came back positive for mitochondrial disease they embarked on the task of trying to identify the mode of inheritance. They decided the first step would be to sequence her entire mitochondrial genome. You see, mitochondria have their own DNA...different from the nuclear DNA. This mitochondrial DNA is passed on from the mother. What they found was that Reagan had only two mutations in her mitochondrial genome, neither of which were disease causing. So now what? Now they are running new tests to look for nuclear DNA mutations...a much more daunting task. In this case the mutation would either be a recessive gene inherited from both mother and father (1 in 4 chance) or it would be a completely random (1 in a million) mutation. Last week when we saw the mitochondrial specialist she ordered a panel of tests to look for the most commonly associated mutations leading to Complex I deficiencies. A few days later I spoke with our geneticist and he mentioned a test that should have been run as soon as we knew she had mitochondrial disorder (this was a test he should have ordered). It's called the MitoChip assay. It's basically a microarray that only looks at mutations associated with mitochondrial disease. So Monday after Reagan's therapies we stopped by the hospital for yet another blood draw. So that's it. Still inconclusive. Hopefully one of these two tests will tell us something (in 2 months or so)...but with genetics you just never know. Please continue to keep our little medical mystery in your prayers!

Wednesday, March 3, 2010

GI appt

Reagan's still not sleeping well. Ugh. I'm so tired. She doesn't seem to mind. This morning we loaded up into the car and headed in to Reagan's GI appt. We weren't in the car 2min and she started retching. I pulled over and nothing. We got back on the road and more coughing and retching. Boy do I miss my helper. We somehow managed to make it all the way in with no throw up. She's definitely been more nauseous the last couple days. We discussed all of this with the new GI doc and his suggestion was that she try Bethanechol. It helps to speed gastric emptying. Not really sure why this would help since everything goes into her intestine anyway. What's funny is that this same medication is also used to for urinary retention. Go figure. It also has the risk of causing seizures. I think we'll discuss this with her neurologist before starting anything. Although it sure would be nice to find something to stop this vomiting. It happened again tonight. Poor thing, it's so sad. She threw up a fairly good amount of clear liquid and then started laughing and then fell asleep. Wish I would have waited to brush her teeth. On a good note, the Augmentin does seem to be doing the trick and Reagan seems to be feeling better overall. We've been getting a lot of laughs and boy do I love that. Today she was even laughing at the dog shaking his toy back and forth. Which is pretty impressive since she rarely ever even notices him because of her visual impairment. She's such a sweetie! Now if only we could keep her healthy and get her sleeping again... Please continue to keep her in your prayers!

Tuesday, March 2, 2010

ECHO/EKG

Reagan continues to give me grief at night. I don't know why but she just doesn't want to sleep through the night lately. Then my sleepiness is compounded by the fact that I have no help right now. I gave my helper two days off. Well, not really. She's taking a class that was suggested by our previous vision teacher called Bonding and Relaxation Techniques (BART). It teaches relaxation techniques similar to infant massage only geared specifically toward visually impaired children. It was a class I really wanted to take myself but Reagan was scheduled for an ECHO/EKG today that I just couldn't skip. So our helper is there today and tomorrow learning how to calm Reagan. Hope it works. So today we recruited Mike to come along with us to the hospital. The mitochondrial doctor ordered an ECHO/EKG just to make sure Reagan doesn't have any heart problems we're unaware of (since kids with mitochondrial disorder are prone to heart problems, among other things). Reagan was great...she was all giggles. She laid on the bed and I held her arms and legs while they did the procedure. Thankfully they didn't have to sedate her. The only annoying thing is the technician was teaching someone while doing the ECHO so everything took double the time. Hopefully we'll find out the results by the end of the week. Reagan was a real handful today. She didn't take any naps. Finally this afternoon she was so tired, she'd doze off in my arms but the second I tried to lay her down, she'd wake up and fuss. She's also been a little gaggy again. For the last several days she'll wake up and throw up and then today she threw up once this morning and then again tonight when I tried to put chapstick on her lips. Ugh. I hate throw up. Granted it's a little different from when she was fed by mouth or g-tube. Since everything goes through her j-tube (and there's nothing sitting in her stomach) when she throws up it's smaller volumes and usually just clear spit/stomach acid. Still not fun. Tomorrow Reagan's got an appt with the GI doctor that sees all of the mitochondrial patients. It's in the medical center at 9:30am in the morning. Reagan and I are going to try to go it alone, so that should be fun. The biggest issue is trying to get all of her medicines in her before we have to leave the house. Wish me luck. And continue to keep my little one in your prayers...

Monday, March 1, 2010

Sleepy day

Reagan was up again last night...which was particularly rough on me because I had to get up at 5:15am to take my mom to the airport! She wakes up crying, I have to pick her up and console her and then the two of us fall asleep in the glider. Of course then she proceeds to sleep nearly the entire day. She was only awake for brief periods of time. Like this morning she fell asleep in her stander. Then slept all the way to therapy, was awake but groggy during OT and feeding therapy. She stayed awake for our brief trip into the medical center for yet another blood draw (for a genetic test they apparently should have done a long time ago). She slept the whole drive home and then was in and out of sleep all afternoon/night. I'm a little worried about her. I'm hoping she's just recouping from being sick (when she couldn't sleep a wink), but who knows. She's still rubbing at her eye/nose with her left hand...I'm not sure if that has anything to do with anything, but I did make an appt for her to get checked out by her ophthalmologist next week. I just want her healthy again. It seems ever since her hospital stay it's just been one thing after another and we don't get more than a couple good days in a row. Please say some serious prayers for her!!