Friday, July 31, 2009

Reagan's got a new house

Another great night's sleep last night! Wow, I love this Clobazam! Well, not love but definite like. I was sure hoping it would help with her seizures (or stop them altogether) but it has surely helped tons with her sleeping. Seizures are not much improved. Sometimes slightly better and sometimes much worse! Ugh. So frustrating! Please keep her in your prayers. We have a little higher to go on the Clobazam, so maybe we'll see some improvement with that. Who knows. We just have to keep hoping. Today we closed on our house. Reagan's house. It's a done deal now. It all went pretty smoothly, so that's good. A weekend full of priming and painting lies ahead of us. Fun, fun. Reagan continues to be feisty. Very vocal, very squirmy. She's been a handful...but she's just so darn cute!


Thursday, July 30, 2009

Tummy time

After a good night's sleep last night, Reagan was in a pretty good mood today. We had a few therapies scheduled (one of which we had to cancel because someone was sleeping) and for the most part they went well. We've also been working with her on the floor (on her tummy). I'd like to try to get her on the floor as much as possible, it's just so hard with all the therapies, feedings, etc... As a baby she really never had that time on the floor like most kids. Reagan was such a cranky baby, crying nearly nonstop, we were always holding her. Then she was diagnosed with seizures, vision problems, and reflux...she just never had that tummy time that babys need for proper development. Of course I'm not blaming that on her lack of development, but it surely didn't help. So that's something I'm going to try to do more often. Put her down! Sounds simple enough, right? It's hard for me, since I've held her so much for so long. It's even harder with her drooling puddles right now. I don't know if it's teething or what, but it's driving me crazy! And she's constantly gagging on it! It's like she forgets to swallow it! Agh! Tomorrow we're closing on our new house. We went over this afternoon to do a walk-through, and boy are we going to have our hands full. There's a lot to do in this house. Nearly every room needs to be repainted and a few of the rooms (kitchen and all bathrooms) have wallpaper that has to go! The plan is to paint all weekend (and maybe finish a few rooms). I think people either love or hate to paint...we HATE it! Should be fun. Still not sure when we'll actually move in. We really want to have the paneling removed from the Den and the walls drywalled and painted beforehand, but I have no clue as to how long that will take so we'll see.

Wednesday, July 29, 2009

Back to work

Last night wasn't the best for Reagan. She woke at 2am in a good enough mood, I fed her and then put her in bed with Grandma. Then she woke again at 6am screaming! From fast asleep to screaming her lungs out...it had to be tummy pains. I'm not surprised considering all she had been through (colonoscopies are known for causing excess gas), but it was still unsettling. She finally calmed down and fell back asleep in Daddy's arms. Thankfully when she woke again she seemed to be feeling loads better. She's been so talkative today...so much personality, now we just need to get her moving! She got back into the swing of things with vision therapy this morning and then feeding therapy this afternoon. She did really well in feeding, eating some applesauce (despite the loads of spit she has pouring out of her mouth) and doing some really good chewing. She wrapped up the session by falling asleep sitting up in the lap of her therapist (this is the second time she's done this). The sleepiness makes for a quiet ride home, so no complaining here. Seizures continue to be pretty nasty. It's very discouraging. I just want them to stop already! Please keep her in your prayers! She needs some relief from this.





Tuesday, July 28, 2009

All scoped out!

Well, we did it. It's over and done with and boy am I glad about that. Reagan slept well last night, waking just before 6am this morning. That in itself was a huge accomplishment, considering the gastrointestinal issues she had right before bed last night. I was only able to get another 4oz of the miralax/juice combo into her this morning and no more bowel movements. Not to be too gross, but they want you completely cleaned out for these things (otherwise they can't see) and I was afraid we were going to have to cancel. I called and they said that we could try to give her an enema to get things working again. It did work and she had another super liquidy diaper full. Turns out that they can still do it as long as the only stuff that's left is of a liquidy consistency. While we were on the phone they told us to come a little earlier (they must have had a no show), so we were there by 10am and Reagan was on her way back by 11am. I don't know, maybe I was expecting it to move a little more quickly, but I was getting a little panicky by the time they finished and finally came out to get me at 12:40. There were actually two scares. While sitting in the waiting room (and worrying about how long it had already been), we heard a doctor behind the door yelling that they needed a cardiologist ASAP because someone had an arrythmia! I was super concerned. I waited a few minutes and then called to the back and they said that Reagan was still finishing up with her procedure, no worries. Yeah right. Then when they called me back she was upset and crying, which is always upsetting, but then I heard the nurses whispering about a bleed. I did not like the sound of that. When I asked them about Reagan's procedure, they wouldn't tell me anything and just said that the doctor would talk to me about it. OK, so I was still worried and poor Reagan, she looked so pathetic. They let me pick her up and that's when she finally calmed down and went back to sleep. But I didn't breathe a sigh of relief until the doctor finally came in and went over everything (it took her forever...I think she was helping with the bleed, which thank God was not Reagan). Everything looks fine. Nothing appears out of the ordinary, but she did take lots of biopsies just in case. She also said that sometimes everything looks OK but the biopsies show something that you couldn't see visually. So now we wait for those results. They usually take a few days to come back and since our doctor is leaving town on Thursday and not coming back til next Tuesday, we probably won't hear back about it until then. I'm just SO glad that everything went smoothly. I was SO concerned with those scares...I was just praying NO complications, no complications. So thank you God, no complications. She's been sleepy all afternoon and only slightly irritable. My only concern now is that she seems to be having even more problems than usual swallowing her spit. I don't know if it's because her throat is sore from the endoscope or what, but she keeps choking! Poor girl. She's been through a lot today. Hopefully she'll have a good night's sleep and be ready for lots of therapy tomorrow!







Monday, July 27, 2009

Preparation

Good sleep last night. Reagan slept straight through in the pack n play. It's so sad because she can barely fit in it. Her little feet bunch up at the bottom and push against the sides. We're starting her off in the pack n play and then moving her to Grandma's bed if she wakes up in the middle of the night. I just don't want her getting too dependent on sleeping with someone (she and I have never slept soundly in the same bed) , and once we move into our new house I want her sleeping in her own room. No therapy today, just preparing for the endoscopy/colonoscopy tomorrow (at noon central time). The switch over to clear liquids has gone fairly smoothly. She's not one to crave her formula (she rarely shows any hunger whatsoever), so I don't think she's missing that too much. However, she's not guzzling down the juice (laced with Miralax) either. She takes a daily dose of 4g of Miralax anyway, but we're supposed to be giving her 1tbsp (approx 13g) of it in each 4oz bottle she drinks! That's A LOT!!! Well, that's a lot if she's actually drinking the juice. I'm beginning to wonder if we'll even get enough of this in her to clear her out (she only drank 9oz total all day). She's wanting to chew on the nipple, so I'm having to pry her mouth open to even have a chance at getting her to drink anything! Another problem is reflux. Juice is thinner than formula so it comes up much more easily. And then she keeps getting hiccups from the reflux...what a mess. Speaking of mess...it wasn't until 10:30pm that we finally had some movement (more like a puddle). We had to throw her in the bathtub to get her cleaned up! I'm getting more and more nervous the closer we get to having these procedures done (of course it's not going to happen unless we actually get her cleaned out). I know this is no big deal in adults, but in little ones it's a little more risky. I just hope and pray that this will give the doctors some sort of insight as to what on earth could be causing Reagan so much stomach pain! I want some relief for her...she's been suffering with this for way too long! Please also pray for a reduction in seizures. We still have a little wiggle room left with the Clobazam but at this point she's still having way, way too many. Time to sleep!

Sunday, July 26, 2009

Pains

Reagan was up last night due to tummy pains. And then if the gas and tummy pains aren't enough, those stinking seizures like to kick into high gear in the middle of the night making it much more difficult to get her back to sleep! She was so whiny last night...and whiny and me just don't get along in the middle of the night. I don't mind getting up when she's happy, I almost enjoy our time together... but when she's cranky, so am I. She was a handful waking up and 1am and 3am fussing up a storm. She finally moaned and groaned herself to sleep sometime around 4 and I put her in bed with Grandma and that was it. She finally slept through. Turkey. I'm so sick of the tummy issues. Tomorrow we have to start a liquid diet to prepare for her colonoscopy/endoscopy on Tuesday. We'll also have to give her massive amounts of Miralax to clean her out. Something tells me tomorrow (afternoon anyway) is not going to be fun. Her procedure is scheduled for Tuesday at noon. I'm getting a little more nervous as we get closer to that time. I'm hoping that this will be worth it and they will be able to see firsthand what is causing her so much pain (and then finally know how to fix it). Please keep her in your prayers!

Saturday, July 25, 2009

Any suggestions

Last night was a good one. Reagan slept all the way through without so much as a peep! Soooooooo nice!! And she's been in a pretty good mood today. Still a little feisty, but not as bad as yesterday. She is giving me a hard time with feedings. Yesterday was worse but today she's still fighting me when I try to get the bottle in her mouth. She'll move her tongue all around and bite down on the nipple. I basically have to pry her little jaws open just to get it in and situated correctly and then she drinks just fine. And it's even worse with the solids. I have no choice though, her medicine has to be given in baby food, but she kept spitting it back out. I'd have to scrape it off her face and put it right back in. This can go on for a while! And she's still super spitty, which seems to make it all the more difficult. Always a challenge! I did increase her Clobazam today and I haven't noticed any increased sleepiness, which is good, I'm always nervous about how these increases are going to affect her. I want less seizures but I don't want her to be so sedated by the medication that can't do anything. Of course, it's not like she's doing a lot as it is, but she needs to have the option. Speaking of, the closer we get to closing on the house, the more excited I get about having a therapy room for her! I'm trying to think of what things we still need to get to optimize it for her (like mats for the floor, mirrors for the wall, etc...). If anyone has any suggestions, I'd love to hear them. I'm not the best decision maker, so I'm sure it will take me a while to figure out all I want to do in there. It's just nice that we finally have the option!

Friday, July 24, 2009

Myo-tonic?

Reagan has been a handful today. Sleep last night was more interrupted than usual. And I think her on-the-edge mood is probably a result of all the seizures she's been having. Big ones. Little ones. Too many. She's actually doing a new twist on the spasm type seizures she normally has. She's adding a little tonic to the mix. So instead of her arms flying up and the whole thing lasting only a second or so, both arms will stiffen up for a few seconds and then she'll remain in a dazed and confused state for a little while. Sometimes it's only seconds and sometimes longer. These aren't the full blown tonic seizures she was having about a year ago...with those she remained completely stiff as a board for 1-2min and then very out of it afterward...they were horrible. But I don't like these new things either. I mentioned this to her neurologist today and he said they are called myo-tonics. Some kind of a combination of myoclonic and tonic seizures. He didn't really say much beyond that except that we should probably go up some more on her Clobazam. So that's the plan, tomorrow we'll increase her am dose so that she's getting 3/4pill 2x day. Hopefully we'll see some improvement with that (without the sleepy side effects). Please keep her in your prayers. Below is a picture I took of Mike and Reagan when we were in the process of moving out of our house. They were both so exhausted...it cracks me up!



Thursday, July 23, 2009

Move that duck

Another great night of sleep last night (for us anyway). My said that Reagan woke twice last night due to seizures, but each time she went back to sleep easily with only a little shushing and patting. Poor thing, they're even interrupting her sleep! It was something I always suspected but now it's confirmed. Her mood today has been pretty good. She's really trying to get things with her hands lately. She loves this rubber ducky and if you lay it on her tummy, she'll reach both hands up to try to get it. That's huge for her. She had a full day of therapy (with no real naps to speak of) and was great through it all. Two of her therapists even commented on how improved her seizures were today, although when she woke up from her late nap tonight she had more than enough to make up for it. Please keep that in your prayers! No more seizures!













Wednesday, July 22, 2009

New love

I was expecting trouble last night. Poor Reagan fell asleep still whimpering in pain. But guess who slept through the night again?!?! I think we've found a hit! This girl just loves to sleep with Grandma. Maybe we'll have to work something out when we move? Days with Mommy and Daddy, nights with Grandma? Kidding aside, I think Grandma will be ready to have the bed back to herself when we leave. I know I can't sleep a wink with Reagan beside me (and I don't think she likes sleeping with me either, she always wakes up). She did wake up happy this morning and I was beginning to think we were going to have a great PT session (we were going to see her favorite therapist that is no longer covered by our stinking insurance). But no, we were only there 5 min or so and it hit her. She started screaming in pain and 15min later another blow out! Poor thing! She was in so much pain. We ended up leaving early and she passed out cold on the car ride home. Thankfully, she woke up feeling 110% better. The rest of the day went off smoothly enough. We had another session with the temporary OT. Hmm...I'm still not feeling it. I guess it's only temporary. I have found a new favorite thing. Yesterday when we were Day 5 without a dirty diaper, my mom ran out and bought some pureed prunes and prune/apple juice. Reagan is definitely not a fan of the prunes, too tart for her, but she LOVES the juice! For two days in a row she's downed a 4oz bottle of it in 10min or less! That's record time for her! It's just so funny, since she's never really liked prunes, I wouldn't have thought to try prune juice with her! Who would have guessed she'd love it!?!? The only bad thing is those 4oz of juice are taking away precious tummy space for formula. She's drinking less of her formula because she's full of juice. Maybe we'll try it in moderation or every other day or something. Those bites I found on her legs a few days ago still haven't cleared up. If anything, they look worse than before. They've gotten redder and have little bumps on them. I spoke to her pediatrician's nurse about it and she said as long as Reagan's not running a fever and there's no pus on them, not to worry too much, just put some cortisone cream on it. She is just so sensitive. Her skin gets red so easily, it's hard to tell whether it's something to be concerned about or not. I guess we'll just keep an eye on it. As always, please keep her in your prayers!


OK, how cute is this??

Tuesday, July 21, 2009

Attack of the tummy pains

Got to make this one quick. Reagan is right in the middle of a tummy pain meltdown. Her good mood streak is finally at an end tonight. She had a dirty diaper and is still letting us know about it. Last night sleep was great. She slept 7hrs straight with Grandma. At least we got some solid hours last night, I've got a feeling tonight is going to be a rough one. Today we've had some unnecessary drama that I'd rather not go into. Let's just say we've had some added stress. Oh well, hopefully we'll have a more easy going day tomorrow (Reagan willing).

Monday, July 20, 2009

Don't let the bed bugs bite

Last night went a little more smoothly. We tried Reagan out in Grandma's bed and she seemed to like it a lot (although I don't know how much restful sleep Grandma got). We found these huge bug bites on her legs and were afraid to put her back where she had been sleeping, so last night I put some tight fitting pants on her and put her in bed with Grandma and she slept pretty soundly. She woke up briefly at 2am and then at 4am she woke up crying so I got up and gave her a bottle and then put her back in bed (wide awake) with Grandma. Then at 7 she moved into bed with me where we both fell back asleep until 8:15 or so. Very nice. We needed that. No more new bites, but goodness the three she already had are quite nasty. Her skin is just so sensitive, poor thing. Today she had a session of OT with a new (temporary) therapist. She didn't seem all that skilled (but who knows, maybe it was just because it was her first time with Reagan). I think I'm glad that we'll be moving on to another, hopefully more experienced, therapist once we get into our new house. Reagan continues to be in a good mood. I can't help but think that it has something to do with the fact that she hasn't had a dirty diaper in days. I'm not looking forward to the end of that streak. Something tells me it's not going to be pretty. Seizures are still pretty rough. She took a good long nap this afternoon and when she woke up she had a TON of seizures. She's having a lot of asymmetric spasms in her legs. Where one leg will pop up, kind of like the reflex when a doctor hits you in the knee. This is fairly new for her. She used to have no involvement of her legs with the spasms (only arms) and they were always symmetric. Not so much now. I'd say she's having more asymmetric ones than not, involving one arm or one leg. It's strange how these seizures evolve, yet remain the same. In our case anyway. Nothing has even come close to stopping her seizures and only a few things have even made a dent in them. It's just so frustrating. It's like we're stuck. We've been at a complete standstill since her diagnosis. I'm ready for some forward progress. Enough is enough. So keep on praying for this one. She just couldn't be more precious and she SO deserves a break!

Sunday, July 19, 2009

Sleep is for night, silly girl

Sleep last night was about the same as the night before. Reagan was up and down from 1:45am-7am. I would have thought that increasing her pm dose of Clobazam might make her a little more groggy and willing to sleep, but no. She did however take more than her share of naps today (see her sleepy yoga pose below). Little stinker! She's started doing this thing when she wakes up, this grunting/hissing noise she makes letting you know she's getting mad and she wants you to pick her up. It often proceeds crying, so if you can get to her quick enough it saves everyone a lot of grief. The only problem is it takes a little longer to register what exactly it is...especially when it wakes you up in the middle of the night. She's been in a pretty good mood today. Yesterday and today we watched her Lion King sing-a-long video on her DVD player and she really seemed to enjoy it. Both times she watched it all the way through without fussing even once. In this case watching TV is actually a good thing...it means she's actually seeing it well enough to be interested in it. She also seems to like the singing...even when I chime in (yes, I do know the words). Other than that, not a lot going on today. We watched golf all morning (the British Open) and then Mike went to play golf (and shot under par for the first time). He does play a lot of golf (too much at times) but at least he's good at it!


Saturday, July 18, 2009

More Clobazam, less seizures please!

Sleep was not so good last night. Reagan was up a lot from 2-6am (and so was I). Oh well, she did have an awesome night the night before. I guess you win some, you lose some. She was in a great mood all day today, lack of sleep never really seems to phase her all that much. She's been super spitty today...there's a steady drip coming out of her mouth (and onto my shirt). Every now and then she forgets to swallow and then chokes on it...not fun. We've been working on reaching with her. My mom bought her a toy that makes different sounds when you press the buttons and she's been pressing away at it. She has a tendency to want to pull her arms back, but if you help her just by giving her a little push behind the elbows to bring them forward, she really goes to town. Therapy is so out of whack with the move, I have no idea when she'll resume a regular therapy schedule again, so for now we're doing it ourselves! I can hardly wait to get into our new house and fix up her therapy room. Having everything out and so easily accessible is going to be an absolute dream. Hopefully we'll get some good therapists to work with her in our new location. Please continue to keep Reagan in your prayers this weekend. We increased her Clobazam dose up to 3/4 pill for her pm dose. Less seizures, please!


Friday, July 17, 2009

Glorious sleep

Sleep at last! Last night was glorious! Reagan fell asleep in her happy mellow mood and didn't wake up until 6am! It was GREAT! At 7am we woke Grandma and while she was up and making coffee, Reagan and I fell back asleep in her bed. I was so tired, I could have slept all day, but that never happens. Not a lot going on today, this whole week has been off with all the moving chaos. Reagan missed out on most of her therapies this week, although I doubt there was much missing done on her part. They did finally deliver her Leckey Bath Chair today. We've been using an infant seat in the bath for quite sometime but Reagan has SO outgrown it. Hopefully this new chair will make bath time easier for everyone. We were able to use some of the excess funding we had gotten for her Squiggles chair to pay for the bath seat. The seating company has been holding that funding for us, but it has been such a fiasco dealing with them, everything moves at a snail's pace. It's too bad we can't use that funding toward paying for therapies, considering all of the obstacles we've faced this year with insurance. Please keep Reagan in your prayers this weekend as we go up once again on the Clobazam. I'm really hoping to see some seizure improvement, because she's been having some tough ones lately. She's such a trouper, with everything she goes through, she keeps us all going with that smile.

Thursday, July 16, 2009

Horrible night, rough day

OK, so much for good times. Last night was a complete and total nightmare that continued all morning. And what's to blame but those blasted tummy pains. Reagan went to bed in a great mood around 8:45pm last night, but woke up 2.5hrs later to me digging in the closet trying to locate our toiletries. And there's no denying she woke up on the wrong side of the bed. She didn't sleep more than 45min straight the entire night and when she was awake she was fussing and crying nonstop. Finally around 4am I decided to try to give her a suppository to speed things along and a few minutes later she went. I thought it would give her some relief but not in the least. The problem is she wasn't done. She hadn't gone in 3 days and her tummy was big time upset. Poor girl. She was completely and utterly miserable. We cancelled her therapies and she continued to scream and cry into the afternoon. Two more movments later she finally felt some relief and was able to take a good long nap. I'm just so frustrated that she has to go through such pain. She has that colonoscopy (and endoscopy) scheduled for July 28th and I hate to say it but I hope they find something. If they could figure out what's causing this pain, then maybe they can finally treat it and stop it altogether. It's almost worse that all the tests are coming back negative, because it just leaves us with no answers whatsoever. And we're running out of tests. Sometimes it seems like we are the only ones that care about helping Reagan. The doctors don't have to watch her scream and cry in pain or have nonstop seizures, so what do they care. SO frustrating. Thankfully she woke feeling much better after her nap. She's been so darling tonight. Right now she's just laying in bed with Mike staring up at him as he watches Braveheart. So sweet. Hopefully this mellow mood will stay with her the rest of tonight and we'll all get a good night's sleep. We need it.

Wednesday, July 15, 2009

Out with the old

Reagan woke a few times last night and I found out it's a little more difficult to handle with her sleeping on the floor. Having to get down and back up off the floor in the middle of the night when you're already exhausted...not fun. She was in such a good mood again when she woke up this morning, I couldn't be too mad at her. We finished up packing today and then went and closed on the house. We will still have access tomorrow, although Mike has spent most of the night tonight moving the rest of our stuff over to his sister's house. I'll probably just go over tomorrow morning to vacuum and leave my key (assuming we still have electricity). And that's that. We're homeless. For a few weeks, anyway. And that's fine by me. I'm glad to be through with that house. We've had some not so good memories in that house and I'm hoping to leave those bad times behind. Only good things to come from now on. Reagan has been in such a great mood since we got to Grandma's house. Lots of eye contact and reaching. Like I said, good things from now on. Hopefully we'll have a good night's sleep tonight. It's always difficult getting used to sleeping in a new setting. My mom made a little bed for Reagan on a sofa in our room with a special barrier to keep her from rolling off. She passed out early tonight (the move must have taken its toll on her) so hopefully she'll sleep through.

Tuesday, July 14, 2009

Sleep for everyone!

Last night was a huge improvement from the night before. Actually it was just perfect. Reagan fell asleep at 9:15pm laying on a boppy on the floor watching her musical toy and didn't wake up until 6am. We didn't go to bed til 11 or so and she stirred a few times but never woke. I can't believe her sleep was improved while sleeping on the floor! I'm wondering if she's actually sleeping straight through or just waking and not crying. Either way, she's happy and we're happy. We needed that sleep. She's been super sweet again today. Very talkative. Still a little groggy. She slept through OT this morning and was a little out of it for vision therapy. More packing/moving today. The first story is still a mess but I'm hoping we'll have it cleared out by tomorrow. Tonight is our last night in the house. We're actually closing tomorrow, a day early than our original date. The buyers wanted to close early but we're still keeping a key until Thursday. They aren't picking the POD up until Thursday. We did have a little scare today when they told me they couldn't pick it up until Monday! They had to contact the local manager and were able to work something out. We're still going to end up with a few things that just won't fit in the POD. The lawnmower, wheelbarrow, grill, and patio furniture to name a few. Hopefully we can find a family member to store those for us until we get into our new house. We're almost there. Please continue to keep us (and our little princess) in your prayers.

Monday, July 13, 2009

All night long

Reagan decided she didn't want to sleep last night. Oh, she was testing my patience, and Mike would probably agree that I failed the test. I'd get her to sleep and she'd wake back up 2 minutes later fussing. This happened over and over again last night. I thought I was going to pull my hair out. Finally around 5am I laid her in bed with Mike and went to fix her a bottle. By the time I got back they were both fast asleep. I slept on the slippery leather couch til 7. What a night. I don't know what her problem was. She did seem to be having some gas, but I don't know if that was actually waking her up. Nights like these are almost worse when you've finally gotten used to a more regular sleep pattern. Of course it didn't help that we were beyond exhausted from packing. Speaking of, the packing continued today. We're concerned that two PODs might not be enough. What if we fill this one up too and still have stuff left over? What then? Not another one! No way! I don't know what we'll do. Please keep us in your prayers. Reagan was a little drowsy today. Who could blame her, she was up all night! But really, I think the Clobazam increase has caught up with her. If only that would carry over to sleep tonight. Seizures, they seem to be getting worse. Maybe this is just a little bump in the road. I sure hope so. I want so badly for this one to work for Reagan. It's time for her to catch a break. Lots of prayers for her please.

Sunday, July 12, 2009

Another packing day

Nothing too exciting. More packing. We do finally have the entire second story clear (and clean...I know I said I wasn't going to do anything but I did). Problem is, the first floor is now jam packed and we're stepping over boxes. Hopefully everything will go smoothly and tomorrow they will pick up our POD that is full to the top and drop off an empty one for us to fill. Only a few days left. It seems like we'll never get it all done, but I guess we have to! Reagan has been a joy today! She was so sweet and well behaved this morning, I put her in her chair while my stepsister and I packed up the kitchen and she just sat there entertaining herself! I was so impressed! Then she took a SUPER long nap (which she never does that early in the day). I think it was probably related to increasing her am dose of Clobazam. She's now at 1/2 pill 2x day. So far it doesn't seem to be sedating her throughout the day, just making her take a longer nap, which is OK by me. I'm hoping we'll see some reduction in her seizures because some of them have really knocked her for a loop lately. She's sleeping on the leather couch tonight. Hopefully she won't slip off. We moved the upstairs sofa down and the downstairs sofa out. We all need some rest, so here's to a good peaceful night!

Saturday, July 11, 2009

Packing overload

Today has been a tiring day. Reagan slept well, only waking once, which she does every night. Still a huge, ginormous improvement compared to before. She was in a great mood all morning. Super sweet. Grandma came over to help us pack and Reagan was loving that! She has been really vocal the last couple days. It's just so cute. Then this afternoon she started to get fussy and we thought she was getting tired but no it was the dreaded tummy pains. She had a huge dirty diaper and cried her little heart out. Poor baby. She finally fell asleep and took a good long nap. It was perfect timing because my stepsister and her husband had just gotten here. They came all the way from Austin to help us pack. Unfortunately, one POD just wasn't enough, it filled up very quickly and we still have a house full of furniture and boxes. I broke down and ordered another (they are surprisingly expensive) but it won't get here until Monday. Do we have to clean the house after moving everything out? I'm new to this but I sure wasn't planning on doing that. I'm exhausted already and Mike has packed up every last cleaning product we had into the back of the POD where they are now completely inaccessible. Sounds like a good excuse to me. Please keep us in your prayers. It's going to be a stressful week. Reagan's seizures were a little nastier than usual today so please keep her in your prayers as well.



Two hairstyles/outfits...same day!

Friday, July 10, 2009

Therapy changes

Today was a good day. Reagan has been such a darling all day today. So sweet and so talkative...just a joy. Quite the improvement from yesterday. This morning she had another appointment with the Feldenkrais practitioner. She had actually just gotten back from a training session in California with Anat Baniel. She was very inspired after seeing the work Anat does with children. Of course with Reagan's great mood, she was very cooperative during her session. She was actually so relaxed that she fell asleep on the table at the end of the session. Then we picked up and went straight over to feeding therapy. Reagan woke up just as we walked in...smiling away. It was a good session. Her therapist worked with her on chewing, a gummy bear wrapped in a mesh fabric, and she did a really great job. She was chewing it way back on her molars and never gagged once, which was surprising, I figured if anything she'd choke on her spit because she's been so spitty today. We're going to miss her feeding therapist, she's going to be out of commission for 2 weeks or so while she recovers from foot surgery. All of Reagan's therapies are going to be a little off for a while because of the move. When we're living with my mom her current OT has agreed to continue seeing her once a week (but when we move into our new house we'll have to switch over to a new OT). Her PT just notified me at Reagan's last session that she wasn't willing to drive that far, so I'm not sure if they'll be able to find someone else to work with her temporarily or if we'll have to wait until we're in our new house. Sounds like she'll be getting a little vacation from her hectic therapy schedule at least for the next few weeks. We've already signed up for the next round of aquatic therapy at Texas Children's. It doesn't start until Sept 15th but I'm pretty excited to see how Reagan does with it. She'll be getting her physical therapy in the water. I think that will be very beneficial for her because she does tend to loosen up a little when she's in the water. The aquatic therapy is only once a week, so I'm thinking of trying to get her in for an additional session per week of "dry" PT while she's in the program. We'll see. Still working on the packing. We're running out of time. I know in the end we'll probably be forced to just be pour out drawers into boxes. My mom came over again today to help me and I've convinced her to donate her services tomorrow as well. It's crunch time!

Thursday, July 9, 2009

Pain in the tummy

Sleep last night was the same. Reagan only woke once but went back to sleep quickly, no complaints about that. Unfortunately, her great mood from yesterday was long gone today as the tummy pains set in first thing this morning. Lots of crying. Poor thing. Why is it so painful for her to have a bowel movement? There is one last test to do that might give us some sort of clue, an endoscopy/colonoscopy scheduled for the 28th of this month. I sure hope that yields something, some clue as to what is causing her such pain. It really ruins her day. She cried all morning and then was fussy most of the afternoon. That makes for a long day (and not much packing). Hopefully tomorrow will be a new day and she'll wake up good to go. She's got two therapies back to back tomorrow morning, so we need her happy and ready to work. I know I have mentioned it lately (usually no news is good news), Reagan's seizures do seem to be reduced on the Clobazam. She's still having them when she wakes up and some of them are pretty strong (yesterday she literally slapped me in the face 3 different times when she was having a seizure), but through the course of the day the number has gone down significantly. She's having less "twitches", which for a while were almost nonstop. I'm hoping that we'll just see less and less seizures as we continue to wean down on the Keppra and go up on the Clobazam. Please keep that in your prayers. It would be such a blessing to finally get her to a point where seizures don't rule every aspect of her life. Seizure freedom would be awesome, but I'd be happy with seizure control at this point.

Wednesday, July 8, 2009

Out like a light

Reagan slept well again last night. She did wake once, but settled down and went back to sleep fairly quickly. She's just been so sweet lately (on the good days anyway). She stares up at you with those huge blue eyes while she drinks her bottle (which is huge for a child with visual impairment), it just melts my heart. She's sleeping so peacefully lately, it's great to see her body finally able to rest, although at times it happens at inopportune moments. Like today during feeding therapy. Her therapist was commenting on how relaxed Reagan was (she wasn't trying to go into extension like she usually does) and that was it. She fell asleep while sitting in her therapist's lap eating avocado. Out like a light. In the picture below her therapist is doing some stretches on her and she never moved a muscle. She was definitely a little groggy at times today. Not sure what that's about. I like it at night but I could do without the daytime sleepiness. Don't get me wrong, a nap here and there is a good thing, but all day sleepiness just doesn't jive with Reagan's packed therapy schedule. It's just strange because there are days like yesterday that she just can't seem to take any decent naps and then today where she's been in and out of naps all day. Strange.



Tuesday, July 7, 2009

Sleep found us

Last night was a good one. I guess after all my complaining someone decided to cut me some slack! Reagan only woke once and fussed a little, but by the time we got to her she was back asleep again. Then she slept through til 6:15am...which was great. She's been in a good mood today, but she's been needy. She only took two naps, both of which were not very long and in my arms. The second I tried to lay her down...she woke up! Ugh. She also had PT and a visit from her ECI developmental coordinator today, so needless to say I haven't gotten much done in the ways of packing. I'm trying to convince my mom to come over and help me pack. She's a lot more organized than I am. And when it's your stuff, you tend to spend too much time going through everything instead of just throwing it in boxes. We're running out of time...now is the time to starting throwing it in boxes. The only problem (if you can call it that) is that my mom wants to spend all her time with Reagan when she comes over. Easy solution, toss Reagan in a box full of toys while we pack (see below). She thought it was funny for a second or two and then wanted out. One box down, 50,000 to go! I just hope everything fits in our storage container. What do we do if it doesn't? Start giving things away? These are just a few of the things I'm stressing about.


Monday, July 6, 2009

Where did the sleep go?

Reagan was up a lot again last night. Restless. By the time I would make my way back to bed, she would be up and fussing again. I really thought increasing the Clobazam was going to help her get back to sleeping better, but it didn't seem to do anything. It's almost worse that we had a few nights of pretty good sleep, only to have them disappear again. Despite the lack of sleep, Reagan managed to wake up in a happy mood this morning. She made it through OT this morning without any incident but then the fussies came on right before she was supposed to go to feeding therapy this afternoon. I went ahead and canceled because I didn't want to repeat the screaming fest she had a few weeks ago. It was probably a smart move because she was getting tired and just needed to sleep it off. Sleep, we could all use some of that. Continued prayers in that area are always appreciated. We did finally get the A/C inspected today in our new house and it appears that everything is OK. The day of the inspection the A/C couldn't get below 81 which really concerned us, but we think it was partially due to it being off all day beforehand and the inspector leaving the doors open as he came in and out. So it looks like nothing is really holding us back now. Nothing except us, that is. It's just such a big decision and we didn't think we were going to be making it so quickly. We really thought we would have time to sit back and look at lots of different houses/neighborhoods while we saved up some money. Now here we are rushing to close before the end of the month with no money saved and we're stressing about it a little. I do think this is a good house for us though. A good house for Reagan and that's what is important.

Sunday, July 5, 2009

Time to increase

We had another up and down night last night. Maybe Reagan is getting acclimated to the effects of the Clobazam, or maybe it's her tummy keeping her up. It was a long night and the day wasn't much better. She was pretty miserable most of the day today and I'm fairly positive tummy pains were to blame. Lots of moaning, whining, and crying...she wasn't much fun to be around. This continued all day, that is, until Grandma came over. She was horrible all day and then she turns it on when Grandma shows up. What a turkey. Tonight I increased her Clobazam to 1/2 pill at night (and kept the morning dose the same). Maybe that will help her sleep better. I sure hope so. Not much going on tomorrow. I need to get some more boxes packed and call an A/C repairman to go figure out what's going on at our new house. Hopefully no major issues, but you just never know. Please keep Reagan in your prayers, she had a rough day today and could sure use a better one tomorrow.

Saturday, July 4, 2009

Start packing

Last night's sleep was off a little, Reagan woke up 4-5 times keeping us on our toes. She was fussing and having some gas, so I'm guessing that was contributing to her sleep issues. We all slept in a little this morning and she's been in a good mood all day. We finally decided to pack a box or two. Slowly but surely. We got a little motivation this morning when Shonda, someone who reads our blog, and her husband brought over a whole ton of boxes for us. They own a packaging business and were so sweet to bring us some supplies to help us in our move. We enjoyed talking with them and we were touched by their generosity to want to help complete strangers. Afterward, Mike was so inspired that he went over to our storage unit and in three trips cleared the entire thing out himself! The plan is to get one of those PODS delivered late next week and fill it up. That way, they'll store it and then bring it out to our new house when we're ready to move in. No more back and forth to a storage unit. We just have to make sure that we don't pack up anything that we need in the meantime. No big plans for the 4th, but that's typical, we rarely do anything. Tonight we drove over and stalked our new house. Just checking out the neighborhood. We went and stood on the back porch of the house and I have to admit, it's nice. It's actually very quiet (a nice change of pace to the noisy road behind our current house). I could get used to that view. People were walking the old golf cart paths and ducks were standing on the old tee boxes. Mike already has it planned out how he's going to stand in the backyard and hit golf balls onto the nearby green. Now the big question is whether or not this A/C thing is going to be a major or minor problem. Maybe it's a quick fix or maybe it's a complete overhaul. I guess we'll find out Monday. I'm still a little unsure of what we're supposed to do so please keep this in your prayers.

Friday, July 3, 2009

Guidance

Last night Reagan didn't wake up all night. She slept from 10pm straight through til 5:45am. I can't remember the last time she did that! It was wonderful! And she's been in a great mood all day. She's being such a sweetie, super smiley and engaging, she's so precious. Grandma came over and watched her today while we had the inspection on our new house and Reagan was on her best behavior. They didn't really find any huge issues like foundation or structural problems but there are some definite issues with the A/C. It's just not cooling like it should and if you're from Houston you know the importance of a fully functional A/C. We're probably going to have to get an A/C guy to inspect it on Monday and let us know exactly what's going on and how much it will cost to fix it. There are a few other concerns about the neighborhood itself, and I think we just need to pray about it. Is this the right house/neighborhood for us? I don't know. We're second guessing ourselves, but I guess that's a normal thing. If you could all just pray for guidance for us. We need to make the right decision for Reagan and our family. I do love the house for Reagan; I don't think we could find a more perfect therapy room. If you could all just keep this in your prayers. If this isn't the right house for us, I'm willing to wait, but we just need some direction as to what He wants us to do. We have to get some serious packing done tomorrow. We still haven't packed a box and we're set to close in less than 2 weeks. I'm beginning to panic! Things have just been so hectic around here, I haven't had a second to do anything productive. Hopefully we'll have a productive 4th!

Thursday, July 2, 2009

Deep sleep

Sleep is still good. Waking once a night...I'll take that any day over where we were. I think the Clobazam just allows her body to finally relax, resulting in more sleeping at night and during the day. And we're talking restful sleeping, you pick her up and she's limp as a noodle. I love that. I'm glad that she's finally getting that kind of sleep again because for a while she was such a light sleeper that anything would wake her up (especially seizures). Unfortunately, sleepiness does not work well with all of her therapies. She had three again today and was wiped out after each one. The perfect way to describe her is mellow. Clobazam is making her mellow. I spoke with her neurologist today about this and he suggested that instead of doubling the dose this weekend, maybe we should just increase the pm dose. Who knows, maybe we'll get a full night's sleep?!?! I'm still in favor of decreasing the Keppra (because I think it's contributing to the twitches) but he wants to go so slowly. We'll go down to 1ml 3x day tomorrow. I'm hoping this will result in less seizures. Please keep that in your prayers. I also spoke with the GI doctor today and she said the results of the upper GI we had done Tuesday all came back normal. The only thing they noted was mild reflux, which we already knew. So no real information from that test. Next step would be to go forward with the colonoscopy/endoscopy scheduled for July 28th. The her cataract surgery is scheduled for August 11th. We've got a lot happening in the next month or so. We're moving out (and packing...maybe I should get started on that) and then assuming everything goes smoothly we'll be moving into our new house. The sellers accepted our offer today and we've got an inspection already scheduled for tomorrow. If everything works out, we'll close by the end of the month. Talk about quick. Quick but not quick enough, we'll still have to put our stuff in storage and move in with my mom for at least a couple weeks. All of this moving is going to wreck havoc on Reagan's therapies, most of which will have to change because we're changing counties. That means a new PT, OT, and vision therapist! I guess that could turn out to be a good thing. Maybe a change of pace is what she needs. Maybe it's what we all need.

Wednesday, July 1, 2009

A house for Reagan

Sleep has been good. There's no explanation other than the Clobazam is a contributing factor. The last 3 nights in a row she only woke once, a HUGE improvement from previous days/months. Last night she woke up and Daddy got up with her, he has a tendency to just lay beside her on the sofa and then they fall back to sleep together. Then he gets up and goes back to bed. Well, apparently he left her sleeping on her side (normally she's flat on her back) and the pillow, that is normally wedged up under her pillow to keep it in a concave position, slipped out. So at 6:30am we woke up and heard Reagan making noises, Mike got up and found her laying on her stomach on the floor. She had rolled off the sofa and onto the floor. The thing is, Reagan doesn't roll. She just doesn't move around enough (or bend her legs) to get the momentum needed to propel herself over. So typically there's no worry in putting her to sleep on the sofa. But last night everything came together and it was the perfect storm. No clue when it happened. Maybe right then, or maybe sometime early morning, but I guess she didn't hurt herself because there was no crying involved. It still scares me though. I can hardly wait to get her off the sofa and back into her own room and bed! Speaking of, we made an offer on a house. We looked at it this weekend and I immediately liked it (Mike was on the fence). First and foremost, it has the PERFECT space for a therapy room for Reagan. It's HUGE. It's a gameroom right off the living room, and it's equal in size. It's a one story in an older golf course neighborhood in the Sugarland area (about 20 min from where we live now), and right down the road from Mike's work. It backs up to a greenbelt, so no backyard neighbors, and it has a gorgeous green yard (that needs to be fenced in). There are some things that need to be upgraded (specifically the master bathroom) but nothing we can't live with for a little while. I really like the space. I'm not happy about it being so far away from my mom, which means less time Reagan gets to spend with her Grandma, but it's more house for much less money when compared to the other areas we're considering. I wasn't really thinking we would find something we liked so quickly, I figured we would have a chance to save up some money while living with my mom. But I guess if it's the right house for us, we'll get it. If not, we'll keep looking. We want to get out of this house and into a house filled with good memories. Please keep this in your prayers. Today was a busy day with three different therapies. Reagan is pooped. She started getting a little irritable this afternoon, but overall she had a pretty good day. Now she's sleeping peacefully on the sofa...hopefully that's where she'll stay!