Saturday, January 31, 2009

Party

Today we went to a birthday party. A first birthday party for Joseph, the son of my closest friend Kristen. We've been friends for 12yrs, even though our busy lives prevent us from getting together very often. She's actually the person that inspired me to go to graduate school (to become a stay at home doctor). I was a little hesitant about bringing Reagan...for one, you never know how she's going to behave and two it's always awkward when people start asking questions...how old is she, is she asleep, is she blind (yes a lady asked me that in the grocery store the other day). But it actually went pretty well. It was mostly family (all of whom we've known for years and know our situation) and a few friends that even if they were wondering, were kind enough not to stick their foot in their mouths. Reagan was in a great mood the whole time. She even seemed to enjoy the puppet show, although she was listening to it more than watching it. All in all, we had a great time. And the food was awesome...authentic greek, so yummy! Now, since we've been home Reagan has turned on the fuss. I think it must be her teeth bothering her because the whining comes in spurts. She'll be completely content and then she'll just start fussing. She even fell asleep so I laid her in bed and 10min later she woke up screaming. Hopefully some tylenol will take the edge off and help her sleep tonight. Please keep her in your prayers. We're set to lower the vigabatrin again tomorrow and we really can't afford any increase in seizures at this point. Lots of prayers needed in this area (as always).


At least he's looking at the camera!


So cute (this boy is super photogenic)!

Look at those lashes! Definitely genetic!


Notice the french braid! Grandma did that, not me.

Friday, January 30, 2009

Hazy

Today started out in a familiar way. Reagan woke up this morning having way too many seizures. Then after an hour or so they tapered off (just in time for vision therapy) and she was in a great mood. It's times like these when it's so obvious what these seizures do to her body and her mind. They keep her in a haze and when they finally stop, the haze is lifted and things begin clicking for her. Oh...we have to stop them for good. Let me rephrase that...He has to stop them for good. The rest of the day went fairly well. Reagan had feeding therapy this afternoon. She actually had just fallen asleep when we had to leave for therapy, but she took a short power nap and woke up in a good mood. Her therapist gives us different crunchy (dissoluble) things to try to get Reagan to chew with her back teeth, instead of biting with her front (you've got to watch out for those teeth). I think she's doing really well with it. She was supposed to have OT right after feeding but her occupational therapist got a flat so she had to cancel. I'm sure Reagan didn't mind. She's still wide awake and it's 11:30pm. What can I say, we're quite the party animals. Please continue to keep our little animal in your prayers.

Thursday, January 29, 2009

Plugging along

Today started off with a bang...and not in a good way. Reagan woke up a little before 7am and I laid her in bed with me and she proceeded to have one seizure after another. This went on for almost 2hrs (while I tried to feed her and give her medicine) until they wore her out so much she fell back to sleep. She woke less than an hour later with a super stinky diaper but in good spirits (and much much less seizures, thank God). She had OT today at 11am and she was quite the character. She was very alert and vocal. There seems to be a general theme to her sessions the last week or so...lots of stretching. She's just been SO extremely tight. Her legs are in constant extension (toes pointed of course), her arms are bent and held tightly beside her body, and her fists are clenched so tight they turn white sometimes! We retaped her hands and it's amazing how quickly that helps her. Immediately she starts opening her hands more and her thumbs come out of their hiding place. Unfortunately Reagan used up all her energy this morning and when it was time for PT she was already worn out. She was a little whiny (we didn't even try her in the walker) and she ended up crashing long before the session was over. Oh well. You can't win them all. We came home and Reagan took a super long nap. When she woke, the seizures returned full force. It's strange that she had that lull in the middle of the day (usually if they let down, it's at night). Who knows. I guess at this point all we can do is just keep plugging along so that evenutally she'll be off one of these worthless meds. It's just so hard to watch her have so many seizures and there's nothing we can do to help her. Please, please, please keep her in your prayers.

Here are a few more pics from yesterday...





Wednesday, January 28, 2009

Too cute for seizures

Ahhhh, finally Reagan slept through the night last night. Granted she didn't go to bed until close to midnight and she woke up shortly after 7am, but I'll take it. She was in a great mood today too. My mom came by and we took some really cute pictures. I'll post a few tonight and more tomorrow. She's been full of personality all day today. Too bad she didn't have any therapies today (she's got OT and PT tomorrow). Yesterday we saw a noticible improvement in seizures, but today they are back. I spoke to her neurologist about the decrease and he said that if we see too many seizures (what exactly does that mean), then we can slow down the decrease. I'm not a fan of that. I think we just need to get her off of it. It's not doing the trick so it's time to move on to something else (of course that's still weeks down the road and we don't have a real consensus on which med to try next). Lots of prayers needed in that area. We've got to get rid of these nasty seizures. Soon. Meanwhile, she's still smiling through it all.






Tuesday, January 27, 2009

Vision therapy and surgery

Reagan was up again last night at 4am but she was just so adorable, super wide eyed and talkative, I couldn't help but laugh. I gave her a bottle and then finally around 6am I tried to put her in bed with us but she was not having it. On a whim I thought I'd try her in her bed and amazingly enough she laid there silently until she fell asleep watching sunny sunshine. Unfortunately it was short lived and she woke again at 8am. I really wish she'd go back to sleeping through the night again. This morning during vision therapy Reagan was really attentive. Her therapist had a pinwheel that she was very interested in, she was using both hands to reach at it and basically tear it up! We've been using her positioning chair for vision therapy and it works so well. It finally gets her into a proper position so she can participate in her therapy and she seems very comfortable in it (instead of me holding her all slumped over). I spoke to the ophthalmology surgery scheduler today and we've scheduled the surgery to remove Reagan's secondary cataract for Feb 17th. Originally they were saying that there were no more openings at Texas Children's (before her doctor left for maternity leave), so we were either going to have to wait until June when she came back or do it at some day surgery center, which I was not at all comfortable with. But apparently they were able to add another surgery day at TX Children's, so we're going to go ahead with it. I'm not thrilled about another eye surgery (that's 3 in less than a year) but it's something that is going to have to be removed eventually and the sooner we remove it, the less likely it will have a negative impact on her vision. Please keep this in your prayers (as well as less seizures...so far so good with the decrease).


Monday, January 26, 2009

One step closer

Reagan was up again at 4:30am. That's her new favorite time to wake up. I gave her a bottle and put her in bed with us around 6am and she finally went back to sleep. Her occupational therapist canceled this morning so we rescheduled to Thursday but she did have physical therapy this afternoon. It went well. Reagan was very visually attentive and her trunk control seemed improved as well. She was so spunky and talkative all day today. I hope that means that she's starting to feel better. Maybe that will translate to less seizures and consistently sleeping through the night again. I put that call in to her neurologist today but never heard anything back so I just went ahead with the decrease. I reduced the pm dose of vigabatrin to 250mg...one step closer to moving on to a new med. Please keep her in your prayers for a smooth transition. The seizures have been a little rough lately on all of us.

Sunday, January 25, 2009

Rest for the weary

Last night was bliss! After a horrible day yesterday and several nights of Reagan waking up in the middle of the night, last night she slept it up and so did we! She went to bed around 11:30pm and didn't wake up this morning until 10am. Thank you God. It was awesome! And she woke up happy (even with a dirty diaper). Luckily that was the last we've seen of the dirty diapers. She seemed to be feeling fine today, although at times she was very flush and running a low grade fever. She must be fighting some sort of virus or something but hopefully we're on the upswing of things. Please continue to keep her in your prayers. Tomorrow we're supposed to reduce her vigabatrin even further and I'm nervous considering the increase in seizures we've seen since the last decrease. I'm going to put a call in to her neurologist tomorrow, but deep down I know we need to just continue with the decrease. I think vigabatrin is probably doing something to help with her seizures but it's not doing enough. It's time we move on to something else with hopes that whatever we try next will be the one, something that will stop these seizures for good.

Saturday, January 24, 2009

Even worse

Wow what a day. Reagan was up again last night. She was super whiny and fussy. Like I said, something is just not right with her. She seemed OK this morning, although she was red faced and running a low fever. For some reason she was very stiff and having lots of seizures, but she remained in good spirits (this morning anyway). Then this afternoon she had a dirty diaper and the screaming commenced. She cried nearly every waking moment after that. She went down for a nap and I thought maybe the sleep would do her some good, but NO she woke up feeling just as lousy as when she went to sleep (and had two more dirty diapers). I don't know what it is. It has to be her tummy because that's when everything started. She hasn't had this many dirty diapers in one day since the nasty stomach virus she had during Thanksgiving. It's just so hard to watch her writhing in pain like that...face bright red, tears streaming down her face, eyes all puffy. Poor girl. Maybe she's just getting sick. Maybe that could account for some of her increased seizures (instead of the vigabatrin decrease). I don't know. I am at a total loss as to what to do about continuing on this decrease. Her seizures have gotten considerably worse, but this medication is not doing enough to justify keeping her on it. I just can't stand the idea of them getting worse. Please keep her in your prayers...she really needs them right now.

Friday, January 23, 2009

A little off

Reagan's been feeling a little off today. She went to bed last night some time around midnight but then she woke up at 4am with lots of seizures and would not go back to sleep. I fed her a bottle and then put her back in her bed at 5:30am still awake. That didn't last long, she started fussing then full out crying and I had to pick her back up at 6am. We put her in bed with us but she continued fussing and squirming, she'd sleep for a few minutes then whine and fuss. We finally got up for good around 8:30am. Luckily Reagan's new vision therapist was running late. She ended up not coming until 10am...luckily Reagan was still awake but a little dazed. She ended up crashing right afterward. She slept until we left for her afternoon therapy (keep in mind she still hasn't had anything other than that 4am bottle to eat). She was surprisingly alert and cooperative for all of the manipulating of the new OT. It was really just an evaluation but it was interesting to talk with her and hear her philosophy on things. Feeding therapy went well. She gave Reagan a gummy bear wrapped in to chew on. Reagan loved it! She does love her sweets. Then toward the end she was getting really tired again. She ended up falling asleep in the car and then slept for 3+hrs. I ended up having to feed her a bottle while she was asleep so she didn't starve to death. She woke up very red faced with a 101 fever. I don't know if it's teething or if she's getting sick or what. Poor baby. You could tell she just wasn't feeling quite right today. Maybe that's responsible for her increased seizures? I don't know. I just hope she starts feeling better. We all really need some sleep tonight and less whining (and less seizures). Please keep her in your prayers!

Thursday, January 22, 2009

Odds and ends

Not much to report today. Reagan had PT this afternoon, she was very alert holding her head up well and really looking around and responding to her name and noisy toys. We did find out that her therapy center is going to be getting one of those new walkers that she can use during her sessions. They're supposed to get it tomorrow, so she'll be able to use it Monday during PT, which is exciting. We're also looking into getting one for home. Unfortunately we've already met our cap for DME until our policy year restarts in September, but that's a long time to wait. We're hoping that maybe we can get the organization that already guaranteed us $2500 toward Reagan's chair (which we think we already have covered through insurance and another funding agency) to cover the cost of the walker instead. That would be great! I'll keep you posted. Seizures have been about the same today. Not any better, but not any worse. Tomorrow is a busy day of therapy. Vision first thing in the morning, then OT and feeding in the afternoon. Her feeding therapist has an OT that she works closely with and highly recommended in order to maximize the benefits of Reagan's sessions there. Every therapist comes at things differently, so I'm interested in seeing her approach with Reagan. We're also waiting to hear back from ophthalmologist on whether or not they want to do the surgery on her secondary cataract now or later. Please continue to keep her in your prayers. I'm hoping for some definite improvement in seizures over the weekend.

Wednesday, January 21, 2009

A new and improved walker

Reagan woke up this morning the same as always...lots of seizures. Infantile spasms sure knows how to ruin a day, with the biggest dose of seizures in the morning. But thankfully after an hour or so they really tapered off and she regained her spunkyness. She was in a great mood and very alert (thanks to less seizures). Unfortunately she used up most of that energy by the time we went to therapy to test out a new walker. It's called the Up n' Go. It's not your typical walker. Most of them just have a little seat and they can either go forward or backward. This one goes 360, they can practice sitting and standing, and each side operates independently so that you can encourage the weight change that comes with stepping. It's very neat and Reagan's PT thinks it's going to work really well for her. Hopefully this ordering process won't be as complicated and frustrating as with her chair. We also went and picked up the new and improved night splints. They look exactly the same as before except they have some new padding in the heel that is supposed to help keep her heel seated down in the splint. They do seem to fit her better but she's still turning extremely red from them. This girl has some serious tone in her legs and feet. They said that she's an exceptional case (and they don't mean that in a good way). She wore them for 30min on the drive home and then again tonight when she took a 1hr nap. Maybe we'll just try to gradually work up to her wearing them over night. That way it's not a complete shock to her system and hopefully she'll be able to continue sleeping through the night in them.



Tuesday, January 20, 2009

Not so hot day

Last night wasn't as bad as I would have guessed. Reagan was up until midnight but she slept well so that was a great relief. Unfortunately today didn't go as well. Lots of seizures today. It's SO frustrating! She had vision therapy first thing this morning and she was just so dazed. She was either about to have a seizure or recovering from one the entire time. It was that way most of the day. Tonight things seem way better. Like a switch has been flipped. Its amazing what these seizures steal from her. She's been super energetic, squirmy and very alert all night. Such a nice way to end the day. I'm hoping that she's just adjusting to the decrease in medication and that she'll get over this hump and leave these stinking seizures in the dust. Please keep her in your prayers this week.

Monday, January 19, 2009

Groggy

Reagan just wasn't quite herself today. She was up at 6am this morning and would NOT go back to sleep. She's been having lots of seizures all day. The kind where they hit her so hard she makes a noise when she has them. I really hate those! I'm not sure if it's a reaction to the decrease, a reaction to change in general, or just coincidence. She had OT at 9am and she was already getting a little groggy. She did alright but did not want to do any weight bearing. Her therapist taped her hands again to try to keep her from fisting, unfortunately it all came off tonight in her bath. Then she fell asleep on the way home from therapy. After a good nap and a little chocolate milk, we headed back for PT. Reagan was alert and happy when we first got there, but she quickly lost energy and kind of zoned out. No good walking today. And once again she fell asleep on the drive home. She really shouldn't have been so tired. Something must be bothering her. Tonight she was flush and running a low grade fever. I checked and she does have another tooth that has just broken through, the bottom right canine (#13). She looks like a little piranha! She still doesn't chew much because she doesn't really bring anything to her mouth but she has been doing this funny thing where she'll kind of gnaw on your shoulder. She doesn't really bite at it (yet), she just kind of presses her teeth against it. It's pretty funny. Tonight my mom stopped by and brought us dinner, Reagan was giddy she was so excited to see her! She was squealing, she was so happy! It was too cute. She went to bed an hour ago (a little early for her) and just woke up crying. Looks like it might be a long night. Please keep her in your prayers. She needs some relief from these nasty seizures!





Sunday, January 18, 2009

Good girl

Reagan's been a real sweetie again today. What can I say, we have been so blessed lately with her good behavior! She used to be such a fussy baby...we joked that she had colic until she was at least 15months old! She went from fussy 90% of the time, to happy 90% of the time. I'm still not sure what sparked the extreme change. Maybe sleeping through the night did the trick (I know I'm cranky when I don't get sleep). Maybe it's medication related. Maybe it was an answer to many, many prayers. What's nice is we finally feel like we can leave the house without a huge incident. There were times we'd leave her with my mom (who she loves) and she'd cry and cry the entire time. The thing is, she would cry regardless, whether it was us taking care of her or someone else (but we felt bad doing that to someone else, so we just wouldn't go anywhere). She's SO much better now. Today Mike and I went together to play golf for the first time in a long time. Unfortunately the wind was blowing a steady 30+mph and I lost my cell phone in the process. Oh well, it was still good to get out for a little while. I moved Reagan's vigabatrin down to 500mg 2x day today. She didn't seem to be experiencing any ill effects from the first decrease, so I took it upon myself to lower it again. Hopefully we'll have her off of it before we have to order it again from Canada. This stuff's expensive...all out of pocket! Please continue to keep her in your prayers...we want LESS seizures!

Saturday, January 17, 2009

Get moving

Reagan's been super sweet again today. She did finally have a movement last night and that had to make her feel better! She was going on 5 days without anything. Yesterday her feeding therapist gave her something called fruit-eze, a tasty prune raisin date mixture that helps with regularity (naturally), and I guess that's what did the trick. She takes Miralax on a daily basis but it only helps with consistency not regularity. OK, enough with the poop talk. Just thought I'd mention it in case someone else is having the same problem. Traffic for our house has really picked up all of a sudden this past week. It's definitely a good thing, because it was dead over the holidays. I really want to get out of here and into a one story house so we can get Reagan's therapy room all set up for her. Right now I feel like we're in a holding pattern, but we can't even begin to look for new potential houses until we have some serious interest in ours. It's just a pain in the butt having to clean up and get out of the house so they can show it each time, but I'll deal with that as long as we can find someone to eventually buy this house! It does seem that we've seen some improvement lately on the seizure front. Maybe it's the decrease in vigabatrin? Wouldn't that be awesome if we just saw less and less as we took her off a medication? Please keep that in your prayers.

Friday, January 16, 2009

Sweet thing

Yesterday Reagan was so good, but then last night she got extremely fussy. Lots and lots of crying, whether we picked her up or laid her down, there was just nothing we could do right. I think it was midnight or so when she finally cried herself to sleep. She was just miserable. I think it might have been teething (although she has been backed up for days). Thank goodness she did sleep through the night though. I felt around in her mouth today and discovered another tooth (#12- the top right molar) and several more trying to make their way out. Now all we have to do is get her to use those teeth, as they were intended, for food not our fingers. We're working on it. She had both vision therapy and feeding therapy today. Vision was at 8:30am this morning. I'm not crazy about early morning therapies, one because I'm not a morning person and two because Reagan's seizures are always worse in the morning...which is very counterproductive for therapy. We did get to use her chair today and it worked wonderfully!! I'm SO happy to finally have that chair!!! Now I need to get used to using it for feeding. For as long as I can remember I've held her on my lap to feed her solids, which is not an easy task. She's just never had enough trunk control to put in a regular highchair (not to mention I was always worried about her hitting her head because of the constant seizures). Now that we finally have this chair that allows her to sit up properly, it should put her in a much better position for feeding...it should put her in a much better position for everything! And she has been such a sweetie today. Right now she's just laying in Mike's arms squirming around and smiling up at him. So cute. I love this girl!

Thursday, January 15, 2009

No such thing as a good fit

So...the night splints are not cutting it. I put them on her last night after she fell asleep (at 11:45pm) and she woke up screaming at 1am and I had to take them back off! Thankfully she managed to fall back asleep after only a little moaning and groaning and I didn't have to stay up with her. Then this morning I called and spoke with the orthotist and he suggested we just come back in to recast her. Ugh. I know Reagan's a difficult case, but can't they get something to fit her right? So after some good walking at PT, we headed back to the orthotic place. They are going to make a few adjustments and hopefully these will work better for her. They'll be ready next Wednesday. Until then she just has to wear her regular AFOs as much as possible. Today was another busy day and we didn't spend a lot of time sitting around in the house, but I did put Reagan in her chair this morning in front of some cartoons and she really seemed to enjoy it. While for some kids sitting close to the TV watching cartoons might not be a good thing, for Reagan any time she spends actively watching anything is very good for her. Tomorrow she starts with a new vision therapist (her other one is on a small leave of abscence) so I'm excited to see how she does. And then she has feeding therapy in the afternoon. Another busy day. Please continue to keep her in your prayers...I would love to see a downward trend in these seizures!







Wednesday, January 14, 2009

Night splints

I don't know what to do with this girl. She's waking up like clockwork every morning at 6:30am...which would be fine if she went to bed at a normal time like most kids. Oh no, not Reagan. Her average bedtime is probably somewhere around 11:15pm! It can sure make for a long day for Mommy (especially when she throws in a middle of the night escapade as well). Reagan had an appt with her PM&R doctor (physical medicine and rehabilitation) today. The one that did the botox in her calves. She definitely noticed Reagan beginning to tighten back up...who knows, maybe the botox was doing more than we thought. We may end up doing it again in a few months especially if she continues this recent trend of spasticity. She looked at Reagan's new AFO's and agreed that they don't seem to be the best fit (she even called over to the orthotic place and spoke with the owner...I like this lady). Unfortunately, I'm beginning to wonder if it's even possible to get a good fit with Reagan. Then we went to the orthotic place (to an already scheduled appt) to pick up her night braces which are actually called KAFOs (knee ankle foot orthoses). I don't know what I was expecting, but this is not it! And I thought the AFOs were difficult to get on! These things are monstrosities! They put them on her right before we left, she had just fallen asleep and was completely relaxed, and even they had a hard time getting her feet properly positioned in them. So how on earth am I supposed to do it? I only left them on her for 2 hrs while she napped (remember she's supposed to sleep all night in them) and they left HUGE red marks on the tops of her feet and her heels. The redness is supposed to fade in 30-40min... it took 2.5hrs for this redness to go away. Ugh. I tried to put them on her earlier while she was awake and moving around...forget about it. I'm going to have to wait til she's fast asleep before I even attempt to put these things on (and then I'm going to have to pray I don't wake her up when I take them back off a couple hours later). Should be a long night. Seizures seemed slightly improved today but then tonight they came back full force after her nap! So frustrating! Her PM&R doctor kept saying "we just have to get these seizures under control"!! It seems she's more concerned about it than her neurologist. Please continue to keep her in your prayers.









Tuesday, January 13, 2009

A chair at last!

Despite a rough start, today actually turned out to be a good day. Reagan was up at 1am and then again at 6:30am. But somehow she still managed to be in a great mood this morning for OT. We taped her hands because she's been clenching her fists again lately, hopefully that will help. Then she had PT this afternoon and slept through the first half (making it easier to stretch her) and then woke up happy and took some really good steps in the walker. She'll struggle to take a good step here and there and then all of a sudden it just clicks and she takes 5-6 steps all in a row. It's exciting. Those rare glimpses where you can tell she's actually getting it, even if only for a second, I love it! I did hear back from her neurologist about the results of her blood test from yesterday. Her levels are still OK, they're a little low but not too bad (they were at 21...now they are at 19...and you don't want anything lower than 17-18). But her doctor said we could even go up a little more on the Topomax if we needed to. So that's good. And even more good news...we finally got Reagan's Leckey Squiggles chair!!! The chair we've been trying to get since last summer is finally here, in our house!! Very exciting. I can't wait to use it. I promise to post some pictures of Reagan in it tomorrow.

Monday, January 12, 2009

Appointments

Today has been a long day and it's not over yet...Ms. Reagan is still kicking and raring to go (and it's 11pm)! We headed in to Texas Children's first thing this morning for her eye appt. Good news is that the thing in her eye is just the secondary cataract that we already knew was there. It's just getting more dense and that's why we can see it now. Her red reflex is still OK for now (which is a measure of how well light is conducted to the back of the eye), so technically she should still be able to see with that eye. Unfortunately there's no clear cut answer as to what to do now. Should we remove the secondary cataract now to prevent any possible damage (since it's going to have to come out at some point regardless) or do we wait until it absolutely has to come out and hope that it doesn't worsen while her ophthalmologist is out on maternity leave. I don't know. I'm very torn about what to do. Her eyesight certainly doesn't seem any worse to me lately, but that right eye has been crossing a lot which can be a sign of her not using it as much. Ugh. I don't know. After the eye appt we went to the neurology clinic for an unscheduled appt with her neurologist (it was very nice of him to fit us in like that...her old doctor would have never even thought of doing that). He agreed to let us start weaning the vigabatrin (down from 750mg 2x day to 750mg am and 500mg pm). I know, not much of a decrease. I think he wants to go slow to begin with and as long as she's OK we should be able to move down more quickly. I'm hoping we'll see those twitches go away as the vigabatrin is decreased (because they first surfaced while we were increasing the vigabatrin). At least I hope so. You just never know whether it's the change of medications making new seizure types come up or if it's just the epilepsy progressing. She's on three seizure medications right now (Vigabatrin, Klonopin, & Topomax)...none of which are really getting the job done. At some point we'll be adding a new medication to the mix, his suggestions were either Lamictal or Keppra. He seems to be leaning more toward Keppra (because Lamictal has to be increased very slowly) but we'll see. She's taken Keppra before but it was a short trial and he doesn't think we gave it a fair shot. Before leaving we also ran by the lab for a blood draw to check her electrolytes (to make sure her body is OK with the latest Topomax increase). Our favorite phlebotomist wasn't working today but we did find a new person that did a good job (no crying or anything). Now we have two to choose from. Sorry for the long post, I just wanted to give a thourough update. All of Reagan's Monday therapies were rescheduled for tomorrow so hopefully she'll be in a good mood. You never know with this girl! She keeps us on our toes. Please continue to keep her in your prayers. Less seizures, less seizures, less seizures.

Sunday, January 11, 2009

Improved

Yesterday must have just been an off day for Reagan. She only drank 12oz of formula all day, took that long nap, and even went to bed fairly early and still slept through the night (no complaining about that). She's already had 21oz today, more than her usual daily intake. It's not necessarily that she's more hungry today, she's just fighting it less (which is much appreciated). Tomorrow morning is her eye appt. I'm so glad that it's finally here. I'm hoping what we're seeing in her eye is just worsening of the secondary cataract and not something more serious. Please keep that in your prayers. We're planning on dropping in on her neurologist after the eye appt. I'm interesting in seeing how that goes. We've never gone in without an appt, but it was his suggestion. I guess he wants to see her before he leaves town again for a month in February. I'm sorry, but neurologists should NEVER be allowed to leave town for a month! I don't care the reason. Seizures seem improved today. Oh please let this be a trend. Continued prayers in this area are much appreciated as well.

Saturday, January 10, 2009

Picky eater

I guess it's a good thing we're starting feeding therapy again, because it has been such a struggle to get Reagan to eat today. I don't know if she's just not feeling well today or what. She did take an extra long 4hr nap today. I finally had to just go and pick her up, otherwise she might have slept even longer! She just does NOT want to drink her bottles. I spent all morning trying to get her to eat 4oz and then this afternoon it took another 2.5hrs to get her to eat 5oz. She just never gets hungry! And I know the Topomax can have appetite suppressing effects, but Reagan has always had this problem. Luckily, it doesn't seem to have made things worse, which we definitely cannot afford. Mike gets on me because I'm always stressed about her eating, but it's not so much the nutrition I'm worried about (she is doing fine in that category), I'm just concerned about her getting enough fluids so that everything can function properly. She takes in so few fluids as it is, when she refuses to eat it really stresses me out! She does have a new tooth (#11)...it's a pointy one on the top left beside the molar. A few days ago I was rubbing her gums and got poked by it! I didn't even know that one was coming out! And she's got another one coming up on the bottom right. That explains the low grade fevers and excess spit we've been dealing with lately. We're just lucky that she continues sleeping so well through it all. It really is amazing how quick they are all popping up considering she didn't have a single tooth at 14months!!! Seizures are a little hairy today. When she woke up from her afternoon nap, she had twitches and spasms nearly non-stop for 2hrs, although they did taper off tonight. It seems with the more recent topomax increases we see an increase in seizures right afterwards, but then they level off as she gets used to the dose. Let's pray that they go away altogether when she adjusts to the doseage!! Please continue to keep her in your prayers!


Friday, January 9, 2009

Praise Him

Another great night's sleep and another day with a super sweet baby! Reagan has been so good today. But then again, she's always good for Daddy (well, not always). We took her to her first feeding therapy session today. It's about 30min from our house, but it's only going to be once a week so I guess I can live with that. I do really like the therapist. She's very experienced and has a lot of new ideas. She thinks that some of Reagan's feeding issues may be due to respiratory issues. It's an interesting idea and something we've actually considered ourselves. She'll go through periods of very rapid respiration that makes it very difficult to feed her. How can you eat if you can't breathe? I hope we can finally get her to make some progress in the area of feeding. Of course, I want her to make some progress in a lot of areas. But I know that a lot of that is dependent on getting her seizures under control. I have seen awesome improvements in kiddos once their seizures were controlled. We want that so badly for Reagan. Please keep that in your prayers. Tonight Mike watched Reagan and I joined my sister for a David Crowder Band concert at our church. We were probably one of the last ones there and the first to leave, but we enjoyed the music and didn't have to fight the traffic, so it was a win win situation for us. They were very good in person...sounded exactly like they do on the radio. I put my favorite song of theirs on the blog. It's a good one! We should be praising Him in the good times AND the bad. It's hard to do, but so important! That's my new year's resolution. To not only praise Him for the little things, but for future blessings as well. For Reagan's healing before she even gets it! You have to believe it to receive it!

Thursday, January 8, 2009

Ms. Personality

Today was Reagan's full day of therapy and she held up pretty well. She's been extremely vocal today...cracking up everyone. She was talking it up at therapy and tonight at Bible study we couldn't shut her up! Too bad she didn't go to speech today! We're actually taking a break from the speech therapy she's been doing so that she can begin feeding therapy at another center. The feeding therapist (who came highly recommended) is certified as a speech therapist so these sessions will be considered speech although feeding will be the main focus. Feeding has always been an issue with Reagan (this child doesn't know what it means to be hungry) and it's an area I think we really need to face head on in order to make some progress. Tomorrow will be Reagan's first session, so we'll see how it goes. Tomorrow we're also increasing her Topomax to 75mg 2x day...which may be our last increase...so we need to see some improvement (big improvements) soon. Please keep those prayers coming!

Wednesday, January 7, 2009

Shipped

Last night we all caught up on some much needed sleep. Reagan slept straight through til 8! I love it. No therapy today, which is probably a good thing because Reagan has been a real stinker today! She's been pretty whiny all day and boy when she's ready for a nap she becomes the baby from hell! She's still super spitty and working on several teeth, so I'm sure that's the root of the problem. Today we finally heard word that her seating system had shipped. That's right, it just now shipped. Turns out the seating company owed the manufacturer money for something else altogether but they wouldn't ship our chair until the seating company had paid everything up. Problem is, no one told the seating company about this, so they've just been waiting for the chair to be delivered. I don't know...something sounds rotten to me. But at least it shipped. Finally. It should be here sometime next week (Mon-Wed) and they are going to deliver it to us the second they get it. One good piece of news is it shipped whole. They had said that part of it was on back order for 30 days and they were going to have to send it later, but supposedly all the parts are there so it should be fully functional when we get it. Yeah! I am so excited about this piece of equipment. Right now any time we need to set Reagan down we either have to prop her up on the sofa (and she inevitably ends up all slumped over) or lay her on her back on the bed. With this chair we will be able to sit her up properly and she can begin strengthening those muscles she needs to use to sit up on her own. It will also be great to use for therapy (specifically vision therapy) and feeding as well. I know I'm going to like it, hopefully Reagan will like it too. If not I'm sure she'll let us know. Big therapy day tomorrow...OT, PT, and vision. Prayers for a happy baby with less seizures!

Tuesday, January 6, 2009

In the middle of the night

Boy I need a nap...or maybe I just need to go to bed at a decent hour tonight (and not skip my morning coffee again). Reagan went to bed last night at a normal time (probably around 10 or 10:30) but then she woke up only 3hrs later at 1:30am totally awake. I got up and fed her a bottle (yes every chance I get I try to pump more formula into her considering she takes in so little to begin with). Finally around 2:45ish she started looking a little sleepy so I put her back in bed. Then when Mike got up to go to work at 7am we peeked in on her and there she was wide awake and kicking in her crib. Who knows how long she had been up! I wonder how often she wakes up like that in the middle of the night but never fusses so we never know. Hmmmm. The only therapy she had today was vision therapy this afternoon. She was really tired and irritable beforehand so I did not have high hopes, but once the right toy was found (something called a pop toob), she perked right up. I'm going to have to find one of these things because Reagan just loves it! She was watching it with big wide open eyes and even putting her hands out to touch it. You just never know what is going to hold her attention...sometimes it's the strangest things! For instance, my mom bought her this minnie mouse that sings "here comes santa claus" and moves her arms up and down...Reagan loves this thing bought on sale after Christmas...go figure!


Monday, January 5, 2009

More wait and see

I woke up this morning to silence. An undisturbed full night's sleep. Mike got up to go to work so I rolled over and looked at the video monitor and there she was fast asleep. Reagan usually sleeps on her back in between two stuffed animals, so she never really budges from that position. This morning I found her wedged up beside the crib bumper. We don't know if she had a seizure or squirmed her way over there, but it's the most movement we've ever seen from her in her crib (since she was an infant anyway). She was so comfy, she did not want to wake up. I finally had to wake her myself at 8:30 so I could get her to occupational therapy by 9. She was in a great mood (and looking super cute in her new pink and brown squeaky shoes) but having so many seizures it was hard for her to get too much work done. We came home and she immediately fell back asleep. I don't know if she was tired because of the Topomax increase, the seizures, or just because I woke her up before she was ready. She had physical therapy this afternoon...less seizures but still very floppy. She did do some good stepping in the walker though. I never heard back from the seating people today on the whereabouts of her chair. It sure would be nice to get it this week. Her neurologist did finally call me back tonight. He said that the visual side effects from vigabatrin occur to the retina and would not be visible by eye. He thinks whatever we are seeing is probably cataract related. I hope so. At least that can be fixed. The side effects from vigabatrin are irreversible. So the plan is just to go in for our scheduled appt next Monday and get to the bottom of all of this. Her neurologist said that we can bring Reagan by the neurology clinic afterward and he will see her while we are there, which is good since he's booked up for the next several months. He doesn't think any more blood work is necessary right now, but he does want us to go up at least another 15mg in her doseage. So Friday we'll bump it up to 75mg 2x day and that might be as high as we go. Right now she's still having lots of seizures in the morning and less as the day goes on (particularly at night). Unfortunately, she's still having WAY too many period, so either the Topomax is going to have to work harder or we're going to have to find something else to pair with it (and finally get off the vigabatrin). Such a guessing game. I honestly don't feel that the doctors know any better than we do. It's just try this one, try that one, increase this, decrease that, wait and see. Trial and error...that's all it is. Very frustrating. Please continue to keep Reagan in your prayers.

Sunday, January 4, 2009

Waiting

This whole weekend has been kind of a waiting game. I'm just glad that tomorrow is almost here so I can finally (hopefully) get a hold of Reagan's neurologist to ask him about that thing in her eye. I also think she may need to go in this week to have her blood checked. As we continue to increase the Topomax, she's at more of a risk for developing metabolic acidosis, which is not a good thing. She's also been doing something weird (usually when she wakes up from a nap)...her whole nose is covered in a salty precipitate. It started back when she had that stomach virus, I thought she was just dehydrated at the time, but it's been happening ever since. I mentioned it to her neurologist and asked if it might be related to the Topomax (which can inhibit your ability to sweat) but he said he's never heard of anything like that. I also sent both her geneticist and her pediatrician emails about it...so we'll see if they have any ideas. Oh Reagan...it's always a guessing game with you. Please continue to keep her in your prayers.

Saturday, January 3, 2009

Whiny

Reagan was crazy hyperactive last night! We could NOT get her to go to sleep. I kept laying her in her bed with her sunny sunshine playing but as soon as it would turn off...she'd start crying (she does love that thing). Sometime around 12:30 I just bit the bullet and let her cry herself to sleep. I hate doing that, but there was no other way. She was just too high strung and could not fall asleep. She did sleep well though, she woke up around 9am! She's still running a low temp off and on. I don't know if it's just teething or if she's getting sick...I sure hope not. She's been super fussy and whiny tonight (Mike says she gets that from me)...hopefully she'll sleep OK. It's just a matter of getting her to sleep now. Today hasn't been too exciting, of course we rarely do anything exciting so that's par for the course. We did finally take down the Christmas tree....now all we have to do is take down the few outside decorations we put up and we'll be done. I hate taking down the Christmas decorations. It's always so depressing. Just when you get everything up, it's time to take it all down again!

Friday, January 2, 2009

Prayer request

Reagan was up again last night. She woke up at about 1:30am in a fussy mood. She was up for close to 2 hrs before finally going back down. I think teething may still be the culprit...she has been running low grade fevers for the last few nights and she has another tooth that's definitely pushing its way up. She looks like a little piranha and she bites like one too. In addition to the typical prayer request for less seizures (I did up her PM dose of Topomax tonight to 75mg), I have something new to add to the list. Last night when I was holding Reagan, she was looking at me with her big blue eyes and I noticed some sort of opaque speck in the pupil of her right eye (Mike said he noticed a week or so ago). This concerns me for two reasons. This eye is the first one to have the cataract removed...a cataract that progressed very quickly (in less than a month)...and it's also the same eye that currently has a secondary cataract forming (although at her appt two weeks ago her doctor wasn't that worried about it because it hadn't gotten any worse). But my biggest concern is that one of the medications she is taking, vigabatrin, can potentially cause irreversible damage to the eye. And if it's responsible for this new development...I want her off of it ASAP!!! I tried to call her neurologist today to ask him about it, but apparently their office is closed. So I spoke with the ophthalmologist's nurse this morning and they are going to get Reagan in on the 12th to check it out (they are booked solid until then). Meanwhile, I want to ask everyone to please keep this in your prayers. Reagan has so many issues with her sight as it is...we really don't need any new problems added to the mix! Not to mention her eye contact and visual awareness seems to have improved lately, so I hate to see anything jeopardize that.

Thursday, January 1, 2009

Chair drama

Reagan had a good night last night. I was a little worried. There were a lot of fireworks going off and they were really loud but apparently they didn't bother her. She slept straight through til 8. Very nice. We had no plans for today so my mom decided to come over and cook us a typical new years lunch. We had pork roast, cabbage, black eyed peas, and corn bread...all of which apparently has some sort of good luck association. Hey, we need all the help we can get! At some point we're going to have to go on a diet to lose the extra pounds we've gained over the holidays...just not today. So I didn't mention it yesterday but we had a small setback with Reagan's chair and I thought I was going to go postal! They were supposed to deliver it yesterday the 31st at 2pm and they call me at noon to tell me it never came in from the manufacturer. Then she proceeded to tell me that since they didn't get it to us before the 1st, we were going to have begin the whole insurance approval process all over again. The thing that took us months to finally get approved!?!? I told them NO WAY. So she called around and apparently our policy resets policy year and not calendar year so it doesn't matter. At least that's what she said. If she calls me next week and tells me otherwise I am going to flip out! So we'll see. Still no chair. We should get it sometime next week, although they've already informed me that the base is missing the pedal that moves it up and down (it's on back order for 30days). Does anything ever go smoothly?? Oh well, that was last year...this year is going to be much better right?