Tuesday, March 31, 2009

Tough day

What a day! In addition to too many seizures, Reagan had a horrible bout of stomach pains this morning. She cried nonstop from 11am-1pm. Toward the end she finally had a bowel movement and then fell asleep, but boy was she miserable. She was crying so hard her face was all red and swollen and at times purple (because of her breath holding). It's just so horrible when she gets like this because there is absolutely nothing you can do to help her. Poor thing. She was super high maintenance today, whiny and fussy all day long, something was not right with her. Could be the Cytra they gave her for the acidosis which has potential side effects of nausea, vomiting, diarrhea, and stomach pains. Why a doctor would give such a medication to a child that already has severe stomach issues is beyond me. The plan is to check her levels tomorrow and make changes if the pain continues. I don't know if I could take another day of this! It's times like these it sure would be nice to have some help around here. Actually, in the near future that will be a reality. Reagan has finally been approved for the Medically Dependent Children's Program (MDCP), which will provide funding for respite. It will allow us to hire someone to help me out with Reagan (and give me the option of going back to work at somepoint in the next few years). I'm still torn about whether to hire a nurse or a regular attendant. It will be nice to have someone along to help me at doctors appts & therapy sessions as well as around the house to help with her daily therapies that I never seem to get crammed into one day. Speaking of, I didn't get the AFOs on her at all today. She was just so miserable and tense, there was no way I could get them on her feet. And the one (1.5hr) nap she took all day was right after her 2hr crying spree, so there was no chance I was going to attempt to disturb her. I still can't believe she didn't take another nap! She was up for 8.5hrs before she went to bed tonight. She's never been up that many consecutive hours EVER! Hopefully, it won't interfere with her sleep tonight. She definitely needs some rest after the crazy day she's had. Please keep her in your prayers for a better day tomorrow.

Monday, March 30, 2009

Just Another Monday

Not much excitement today. Reagan had OT this morning...she did well but the seizures were brutal. Poor thing, it's so hard to watch her trying to do things and then getting zapped by those darn seizures. I put a call in to her doctor today to ask him his opinion, but I haven't heard back. We had to forgo PT today because our insurance hasn't approved our appeal for more sessions yet. It's really getting on my last nerve! Reagan made it 3hrs today in her AFOs without getting too terribly red. I think it helps that I didn't go up as quickly as they wanted (although I don't know if she'll ever get to the suggested 6-8hrs). We'll probably try to do 3hrs again tomorrow. She's still incredibly stiff so it's definitely not easy. She's been a little kooky today...very talkative and hyperactive. She's been eating a little better lately...not her bottles (she's still on the lower end with those) but she's eating solids a little better than before. Today she ate a good amount of cerelac (baby cereal) at lunch and then a whole thing of kid sized yogurt with dinner. I'm still struggling to get plenty of fluids in her, but at least she's finally showing some interest in eating food. Baby steps. Please continue to keep her in your prayers.

Sunday, March 29, 2009

Broken

Reagan has been SO stiff today. It makes it difficult to hold her, much less carry her around. I only left her AFOs on her for 2hrs again because she was so stiff I was afraid she was going to hurt herself. We've got a follow-up appt with her Physical Medicine and Rehabilitation doctor in April (the one that did the Botox) to discuss our options, but I'm afraid we're not going to see huge improvements until the seizures improve. Speaking of, seizures have been nasty lately. I'm very frustrated with this. She had a small window of improvement and then it seems like she's really getting hit hard with them lately. I don't know why they've increased, but they have and they're really wearing on her (and me). Hasn't she dealt with this enough? Doesn't she deserve a break? Ugh. So frustrating. Please keep her in your prayers. Speaking of, I'm reading a book right now, a really good book that I highly recommend. It's called Brokenness...I heard about it on Cody's blog...you can click here to read the preface from the book. The author is a pastor whose child had severe seizures but the book focuses more on the questions and Biblical answers as to why bad things happen to good (christian) people. I'm only on the third chapter but so far it's a great read and very thought provoking. It really applies to everyone...those who have been broken and those who know someone who has been broken...that's just about everyone isn't it. Definitely worth reading.

Saturday, March 28, 2009

Cute pics

Not too much to report today. Reagan slept well again (thank God for that) and she's been in a pretty good mood all day (although seizures are still yuck). We went to the mall for a few hours today (while they had 2 showings at our house) and Reagan held up well. Unfortunately she fell asleep and stayed asleep and never got her picture with the Easter Bunny! We were hoping she'd wake up but that didn't happen until we put her in the car to leave! We did take a few cute pics at home though. Today I gave her the Cytra 2x and she still seems to be tolerating it well (although it's only a fraction of what she was supposed to be getting), but tomorrow I'll try it 3x. I just hope it's helping with the metabolic acidosis. I've been fairly good about putting her AFOs on her lately, but we've only made it up to 2hrs max because she's still getting pretty red (and it's hard to remember to put them on her). Maybe we'll try 3hrs tomorrow. So that's about it for today. Mike is still gone (with Grandma filling in). He hasn't had too much luck fishing because of the extreme weather but I'm sure he's still enjoying his time away. Please keep him in your prayers as he makes his way back to the real world tomorrow!! Send a few my way as well, I'm still dealing with an extreme headache (that's making my ears pop). I think it's sinuses but who knows...it feels like my head could explode. And as always keep our little angel in your prayers, she needs some relief from these yucky seizures.







I love these tights...with little fuzzy hearts on them!




Friday, March 27, 2009

Headache

Today has been another headache...literally. I have such a splitting headache right now! It's not Reagan's fault, she's actually been pretty great today (except for the seizures). I got some irritating news about one of the equipment grants we had applied for...instead of giving us the funding or even notifying us of what they were going to do, they just up and ordered the chair! The exact same chair we already ordered two months ago! So now we're going to have the headache of trying to explain to these people why this was a horrible idea and hopefully we can send this equipment back and get the funding rerouted to the seating company we've already gone through. What a big, huge, gigantic mess. Definitely added to my headache. Reagan had lots of therapies today. Vision first thing this morning and then feeding and OT in the afternoon. She actually slept through her entire feeding therapy today. All was not lost though, I fed her a bottle (which she drank effortlessly because she was sleeping) and then her therapist was able to stretch her lips and mouth without a fight. I put a call into the nurse first thing this morning about her medication dilemma but never hear back from them until late afternoon (and two calls later). They didn't listen to any of my concerns about this stuff making her sick and they want me to at least attempt to get her to take some of the sodium citrate to help with the acidosis. They said I could try giving her 1-2mls at a time (instead of 4mls)...so I diluted it in less than an ounce of juice and syringed it into her mouth. It was very sour, but she tolerated it as long as I took it slowly. I'm not sure we're going to be able to do this 3 times a day, but we'll see. I'm just hoping this will help the acidosis and maybe we'll see a decrease in seizures this weekend. Please continue to keep her in your prayers!

Thursday, March 26, 2009

Bad news and bad day

Today has been quite the busy day. We started it all off with an early trip into the med center for an eye appointment. This was a fluke appt that had been scheduled months ago and I almost canceled it but decided to keep it just to make sure that we had a correct prescription before getting Reagan's new glasses (considering the doctor we saw a couple weeks ago was a complete nut job). This was our original doctor, she's a neuro-ophthalmologist and she's the one who diagnosed Reagan with Cortical Visual Impairment. She also found Reagan's first cataract and ever since we've been following up with the cataract surgeon. I was very glad that I kept this appt because not only did she rewrite the prescription (basing it not only on the reading but also on her CVI and what would work best for her) but she also found another cataract. Yep, that's right. It almost makes me nauseous to think about it, but her left eye is now forming a secondary cataract as well. Ugh!!! I'm so sick of surgeries! I'm so sick of all of this. The seizures, the throwing up, the surgeries...this morning I did have a small mental breakdown. Sometimes it's just too much. And today was definitely one of those days...the seizures being the worst of it (she was literally twitching or having a seizure every 1-2 seconds for hours this morning). We're going to follow up with this doctor in a month (no more visits with psycho doctor) so she can monitor the progress of the cataract. I'm praying that it won't get any worse and won't require surgery until after our surgeon is back from maternity leave. The thing is, she assured me that they have other great surgeons that can perform this surgery...they just don't work out of TX Children's and with all of Reagan's other medical issues, I just don't feel comfortable doing this surgery any where else. She also checked the pressure in Reagan's eyes while we were there (it was fine) and said that this should be done at every visit because cataract surgery puts you at a higher risk for glaucoma and should be carefully monitored. Good to know, no one else has ever checked the pressure in her eye! Then we picked up her lab slip from neurology and had her blood drawn to check her electrolytes again. Since increasing the Topomax back up to 90mg/2x day, her CO2 levels have gone back down (this time to 16 instead of 15) but still indicating acidosis. They prescribed her some sodium citrate/citric acid solution to take to try to normalize her body's pH...unfortunately there is NO WAY she can take this stuff. They want her to take 4mls of it 3x day and it's this horrendous tasting stuff that needs to be diluted in 4-6oz of juice or water to prevent you from throwing it all up. There's just no way. Reagan won't drink 1oz of juice on a regular basis...there's no way we can get her to drink 4-6oz of it 3x a day! Then I read the side effects and they are nausea, vomiting, diarrhea, etc...that's the last thing we need to add to the bunch! I don't know if there's any other option, we may have no other choice but to lower the Topomax back to a level that she can tolerate. Please keep all of this in your prayers...Reagan need lots of prayers and so do I. Mike needs prayers for safe travels as he is "gone fishing" through Sunday, thankfully my mom is staying with us to help out with Reagan. Despite all the drama today, Reagan has been a real trouper! She was so well behaved during our 3+hrs at TX Children's, she didn't fuss even once, and then tonight when Grandma came over she was so happy and talking up a storm! She keeps me going. Boy, do I love this girl!

Wednesday, March 25, 2009

Sick of throw up

Today we went to our appointment at the orthotic place and to my surprise all of the focus was on her regular AFOs. The owner (who has been doing this for decades) thinks it's most important to get her comfortably wearing her regular AFOs before we focus on the night splints. He was quite impressed by the amount of tone and spasticity she has in her legs...it's never good for an expert to be amazed at how bad your child's anything is. He made several adjustments and two hours later (and Reagan being great the entire time) we finally left. He wants us to try to increase her time in them each day until she's wearing them 6-8hrs every day. We'll see. I'm still skeptical that she's going to tolerate them that long. He is going to send someone out to her physical therapy session next Thursday to give her therapist advice on how to work with her extreme tone (I guess that's why but I'm still not sure). He also said that in light of all of the problems we've been having lately, the next set of AFOs are "on the house" and that he would personally fit her for them. So it was a long appointment, but I feel like for once we may actually make some progress with all of this. Reagan's childrite seat came today (we were finally able to get it thanks to those that contributed toward her equipment fund) ! That was quick...I just ordered it Monday! We didn't get to test it out too much, but it seems to fit her well. The only problem is she likes to lay her head back against the backrest when she gets tired! She's been quite fussy tonight. I think it's her teeth but who knows. She did throw up all over the place when I tried to give her some tylenol tonight. Ugh. Have I mentioned how fed up I am with the throwing up?!?! I just have no idea what's causing it and therefore have no idea how to stop it! I did finally hear back from the GI doc today about switching her reflux med. She's been on Prevacid for quite sometime and I'm unsure how much, if at all, it's been helping her. She said we could try Nexium, although it has a similar mechanism to the Prevacid, sometimes it works when the Prevacid doesn't. So it's worth a try I guess. I'm still not convinced that the throwing up is 100% reflux related, but the reflux has been worse lately (I can hear it coming up) and maybe it's part of the problem. Seizures have really been nasty today. Lots of big ones and lots of small ones in between. They were almost nonstop at times. So frustrating. Maybe that's also related to the teething...or maybe that's just wishful thinking. Please send some prayers Reagan's way...she definitely needs them.







Notice the french braid!!! How cute is that?!?! (Grandma's doing, not mine)

Tuesday, March 24, 2009

Still off

Reagan has been in an odd mood today. I'm still thinking it's teething related. Super tight/spastic and quite fussy, she didn't take a real nap (one over 15min) until 6:30pm! She only slept about an hour but I guess it helped because she's been much more mellow tonight. She tried to choke on her bottle several times today (but never threw up), so I finally put a call into her GI doctor asking her opinion on the situation and requesting we make some changes to her reflux medication. Haven't heard back from anyone yet. Tomorrow we're supposed to go in and the owner of the orthotic place is going to look over the fit of Reagan's $8800 night splints. Maybe he'll have some input on how to get them to fit her better. I've been really bad about putting any of her AFOs on her lately. She's been sick and irritable and so darn tight lately it's hard to even get them on her!! I worked with her today on sitting and finally got her to cooperate at home! I was so impressed. I'll have to take a picture of her "sitting" on her own. It's too cute, she has to really concentrate to stay upright and balanced, but she's doing it and that's certainly an improvement. I can hardly wait to see her in the chair I ordered. I think she's going to do great in it. Seizures continue to be rough. Things were going so well for a while and then she got sick, acidotic, we changed up her medication and ever since her seizures have been yuck! Please keep this in your prayers. She needs relief from these nasty things!

Monday, March 23, 2009

Sore gums

Last night was a tough one and it had very little to do with Reagan. I could not fall asleep because of my constant coughing. Then Reagan woke up at 2am crying, but she was easily settled with some juice, then I had to get back to sleep again. I was exhausted but this constant tickle in my throat was keeping me up and coughing nonstop! Mike didn't have a problem sleeping, but he's feeling just as bad as I am today. When are we going to start getting better?!?! I'm sick of being sick. I don't have the time for it. Reagan had two therapies today. She practiced her sitting a lot but was a little reluctant again in the walker. You can tell the seizures are interfering. She's not only having more seizures, but also the twitching that we first saw yesterday (and not subtle twitches either...I would compare them to the reflex reaction when a doctor hits you on the knee). I'm not sure what that's all about. She's also been pretty fussy today. I think it's her teeth. The same ones that we thought were coming through about a month ago. They're still just under the skin, but I think one of them is about to break through. Her cheeks have been very red and swollen looking today and she was running a low fever last night. Hopefully it won't interfere with her sleeping tonight. When we got home from therapy today, we had a couple of interesting messages waiting for us on the answering machine. One was from the genetics coordinator telling us that the results of Reagan's skin biopsy were back (testing for mitochondrial disorder) and they were negative. This however does not necessarily mean that she does not have it, it just means that the skin biopsy did not identify anything. Unfortunately, it is well known that kids can test negative (especially with the skin biopsy) and still have this disorder. The most accurate way to test for it is to do a muscle biopsy, but our doctor wanted to do the less invasive test first. So as much as I hate the idea of it, that's probably the next step somewhere down the road. The other message was from a guy from the Elks lodge (one of the organizations we had applied to get help to pay for Reagan's chair). I called him back and he apologized that it took him so long (because we applied back in September), but he has a check for us that will more than pay for Reagan's chair. It will actually help us to get the walker that we have been wanting to get for her and we thought we would have to wait because our insurance has already maxed out its yearly limit for DME. This was especially good news considering I had to deal with more insurance drama today...they only want to pay for 20 PT sessions per year for Reagan (which we've already used up). Obviously she needs more, much more, so it's just frustrating that we're now going to have to appeal this in order to continue with her therapy. So needless to say, I needed some good news and this certainly fit the bill. It's as if God is saying...Don't worry about it, I've got it. Thank you God.

Sunday, March 22, 2009

Sugar high

Poor Reagan, she was really having a rough night last night. Something was upsetting her tummy. When I tried to put her down sometime after midnight, she was not having it and the fussing and crying picked back up again. Finally, after several attempts, she settled down and went to bed. She slept through the night and this morning I found the reason for the fussing. She had pooped up the front of her diaper it was all over her clothes! Thank goodness I have no sense of smell because I'm sure it was nasty! It had obviously happened when I first laid her down and she slept like that all night long. Poor thing! At least she woke up in a much better mood. I wish I could say the same. I feel even worse today (if that's possible). When are we going to get on the upswing of things?? Reagan seemed handle this junk much better than we are. I think we're going to have to find some time this week to go to the doctor, because this is just not cutting it. I'm sure a steady diet of birthday cake and candy is not helping things. Today has been a down day. I haven't gotten anything accomplished. There's still a lot of stuff out of place from the party and a lot of laundry and some basic grocery shopping that I need to get done. Maybe it will happen this week. Who knows. Reagan has been such a sweetie today. She woke up with quite a few seizures (and a lot of twitches which we haven't seen in a while), but she's been so alert and happy today. She's enjoying all the new toys she got for her birthday. That Elmo Live is so amazing (he can do so many different things) but it's a little scary at the same time! She also accumulated a lot of equipment money for her birthday, most of which we plan on saving to buy her things she needs throughout the year. The one thing I do plan on getting right away is the big bumbo chair (childrite seat). Now that her head control is improved, I think this chair will help her to work the muscles she needs to sit independently and I'm excited to see how she does in it. I want this girl sitting and we're going to do our best to make that happen. In the meantime, please keep her in your prayers...because that's how it really happens.

Saturday, March 21, 2009

Birthday girl

So here it is, the big day! Little miss Reagan is two today! Initially it didn't seem things were off to a good start with her waking at 4am and then up for good by 6am, but it ended up working out perfectly because she took an early nap and was up and ready to go just in time for her party! I think it went well, especially considering how extremely sick we are. I definitely feel worse today (and honestly I didn't think that was possible). Hopefully this is the worst of it and we'll get better soon. My biggest concern is reinfecting Reagan...I just want her to avoid getting sick again. Anyway, I think the party went well. We had a big turn out, probably 40+ including kids. And there were a lot of kids. We had an easter egg hunt in the backyard and they seemed to enjoy that. It was nice catching up with family and friends, all the while trying to keep a safe distance to avoid cross contamination. Reagan was content, although she did get a little tired toward the end. I don't know if she's ever been around so many people all at once! She was in a good mood most of the day, it wasn't until tonight that she got a little cranky. Tummy pains again. Poor thing. She filled up two diapers and was still crying and crying. Not a good way to end a birthday. Hopefully she'll sleep well tonight and we'll all get some much needed rest. Please continue to keep her in your prayers! *Notice the super cute birthday bib that Grandma made for her...it matches her dress!! So does her cake!*







Friday, March 20, 2009

Frustration

Today has been an all around frustrating day. Really it all started last night. I tried to lay Reagan down and she wasn't having it, so I brought her back downstairs and tried to give her some milk which she then proceeded to throw up all over the place. Lots of it. It had been a while since the last incident, so I thought maybe we were gaining some ground with all of that. Thankfully it didn't effect her sleeping and she slept through til 7am. But I woke this morning feeling like death warmed over. And so did Mike. Now I know why Reagan was so fussy and whiny last week. This sucks. And there's no chance of a sick day for me. I had to take Reagan into Texas Children's this morning for her blood draw to see if her levels have improved since decreasing the Topomax. Then we went straight to feeding therapy. Reagan's still having some oral sensitivity issues, which made therapy a little rough but she seemed to warm up towards the end. She was a little sleepy for OT, but she worked through it. Then we headed home and tried to get some milk into her which she promptly threw up AGAIN! So frustrating!! I don't know what to do about this, but something's got to give! This child can NOT throw up this often! Ugh. Then I finally spoke to neurology (the nurse) and she relayed that Reagan's CO2 levels came up a little, so they want to increase her Topomax back up to see if her levels go back down again. What is she, some sort of guinea pig? I don't understand why we have to do this. They say they want to increase it again to see if it is actually helping her seizures and to see if it is in fact causing the acidosis (which of course it is). They just don't want to add a new medication to treat the side effects of the high dose Topomax unless it's really helping. OK, I understand that, but it seems like a weird way to go about it all. So that's the plan. Increase the Topomax back to 90mg 2x/day and see how her levels look in a week from now. I can't say I'm happy with that plan (because it's basically going to throw her back into acidosis) but whatever. I'm still left feeling very frustrated...for Reagan. I just don't feel like we're getting any answers for her. And here we are sick as dogs for her birthday. I considered cancelling her party, but that's not fair to her. So we're going to try to pull ourselves together, not breathe on anyone, and give this princess the party she deserves tomorrow. Please keep us all in your prayers.

Wednesday, March 18, 2009

Fighting a losing battle

Last night was another good night's sleep for all of us. It didn't help me much, I woke up this morning feeling even worse than yesterday. I've definitely got some sort of respiratory junk. The sneezy runny nose, tightness in my lung lungs, a super sore throat...all yuck. And a killer headache (and occasional fever). I think Mike's next, he's already feeling it a little. On a good note, Reagan seems to be feeling better. Very little coughing now but she still has a runny nose. I'm still hoping she'll be in good form by her birthday Saturday. She only had one therapy today, PT, but it went well. She wasn't too interested in walking, but she did a great job sitting again. I'm so impressed! I think it's all related to her improved head control...it just allows her to do things she couldn't even think about before. Her therapists (and some others in the office) pitched in and gave Reagan a birthday present. So sweet of them to do that. Very sweet and totally unexpected. We've been going there for nearly a year and a half now and everyone there just loves Reagan (especially now that she's so sweet). Yesterday I finally spoke with a supervisor for our insurance (after 4 different attempts) and it seems they are NOT going to pay anything toward Reagan's chair. After months and months of appeals and all of the waiting and waiting...they say that we already met our DME max because of Reagan's orthotics. So my question to all the special needs parents out there...does your insurance consider orthotics (AFOs & KAFOs) durable medical equipment? It seems ridiculous to me and I'm still not convinced they are telling me the truth. I'm so irritated by all of this. We're basically back to square one. The supervisor said that I can appeal it on the grounds that we were told differently by an insurance rep back in December...but we'll have to site that specific conversation, they'll have to go back and review the tapes, and this could drag on for another however many months at which point they may or may not side with us. I want to appeal it because I hate the idea of letting them get away with this, but at the same time I don't think I can take much more of this. It seems they may have won this battle. All of my hard work was for not. Luckily we still have some funds available from two different charitable organizations that should cover the entire $3300 out of pocket expense. Thank goodness I anticipated insurance problems ahead of time and applied for this extra funding months ago, otherwise we'd be up a creek without a paddle.

Taking it easy

Today has been another great day with my sick little girl. No therapies, just taking it easy here at home. She's just been so darn good while she's been sick...other than the first couple days when she had a fever, she's been an absolute angel. She slept from 11pm-9am this morning! Or should I say I slept...because who knows how long she laid there in bed kicking her legs but not saying a thing. I woke up and could not believe that it was already 9am (I know Mike's going to be jealous) and then looked at the monitor and there she was just kicking around without a peep! She's still coughing but not quite as bad as yesterday. Her seizures are definitely on the rise, which is a huge problem. There's just so much going on right now it's hard to identify the contributing factor...is it the sickness, the decrease of the Topomax, the increase in the Lamictal, or what? I'm guessing it's decreasing the Topomax. Maybe it will get better once her body gets used to this dose again. Let me tell you, this constant struggle to find something that actually decreases her seizures, it's exhausting! It makes me want to scream! I won't though because I too have an extremely sore throat and have been running a fever today. Mike said he's getting a scratchy throat too. I just hope we don't end up transferring the junk back to Reagan! I really want her feeling better by her birthday! I want everyone to see the improvements in her that we've seen lately. Unfortunately when I was planning all of this I didn't even think about what time of the day would be best for her. Reagan has never had a set nap time, but she does tend to take an afternoon nap (right around the time I scheduled her party). I hope we can keep her up and happy so everyone can see how precious she is! Continued prayers for healing, less seizures, and resolution of the metabolic acidosis are still needed.

Tuesday, March 17, 2009

Sick but oh so sweet

Reagan had another good night's sleep last night. Amazing really, considering the horrible cough she's got right now. Her nose is super runny and every little thing makes her cough...especially a bottle in her mouth. She's been super difficult to get anything into. Her stuffy nose makes it difficult to breathe and eat at the same time, so when I give her food (with her medicine in it) she tries to spit it out and when I give her a bottle there's really no sucking involved at all. It basically just drips into her mouth and hopefully she swallows. Talk about time consuming. I basically kept a bottle in her mouth all day today and only got a whopping 12oz into her. In spite of it all she has been in a pretty great mood. Super smiley and sweet. She's also been very vocal, but it's in this soft, hoarse little voice...so cute!! I sure hope she can beat this sickness soon, as her Saturday birthday is rapidly approaching. We also need to see some improvement seizurewise. She had been doing so well lately, so this recent increase is very discouraging. I'm hoping it's just the fact that she's sick and we'll see some improvement once she fights this junk off. I continued with the scheduled Lamictal increase today, and while I hate making two changes at once, it's such a small increase it really shouldn't make a difference. So now she's up to 1mg a day. We've got another two weeks at this dose before the next increase. Everything's moving slowly these days. Frustrating. Please continue to keep her in your prayers.

Monday, March 16, 2009

The results are in...

Metabolic acidosis. Yep, that's right. If I wouldn't have insisted on having Reagan's levels checked we would still have no idea she was in acidosis. Why is it that I'm having to diagnose my child? I had already mentioned Reagan's strange throwing up incidents to both her neurologist and to her pediatrician's nurse. Nothing. The nurse actually suggested that it might be behavioral!! Ugh. I just don't know what to say anymore. Reagan has been at this dose of Topomax for over a month now...and possibly in metabolic acidosis for over a month now! Insanity. Apparently it's not full blown acidosis and we can just tweak her medication a little to try to stabilize her (although I never heard back from the doctor about it...just my favorite nurse). The plan is to decrease Reagan's pm dose by one pill (from 90mg to 75mg) and then check her blood electrolytes again to see if her levels have normalized. If not, then we'll talk about adding bicarbonate to normalize her internal pH. So that's the plan. Meanwhile we're dealing with a very sickly little girl. Tummy pains have been really kicking into high gear at night. We saw this last night and the night before...lots of screaming and crying...lots of gas. Poor thing. And if acidosis and tummy pains weren't enough, she woke this morning with a nasty cough and a runny nose! I guess I should be thankful that she slept through from midnight to 6am this morning. She's actually been a good mood most of the day (in spite of the junk she's battling). She had a good session of OT this morning and then this afternoon she had a great session of PT (or so I'm told). I always sit in on her therapy sessions but today I left Grandma with her while I ran to the grocery store. Wouldn't it figure that she would be a little showoff while I'm gone. She sat unassisted for a minute and a half before tipping over! I am still in disbelief about that. Now, she wasn't totally upright (she was leaning forward a little), but that's still really great for her (usually she wants to throw herself backward into extension). Then she was walking like a pro again in the walker! Such big steps, her therapist thought my mom was pulling her forward, but she was doing it on her own! She really turned it on for therapy today. At home she's been a little more sicky. And quite a few seizures. Poor thing. Please keep her in your prayers. She's got a lot of things going on right now, most of which are not good. Lots of prayers still needed!



Sick but still smiling!

Sunday, March 15, 2009

Battling the junk

As the night went on last night, Reagan just got more and more miserable. Her tummy was really hurting her. She just could not stop crying. She had a rough one last night waking up at 1:30am, 4am, 6am. But this morning she seemed to be doing a little better. We haven't seen any fevers since Friday, but she seems a little congested today and she's had a few coughing fits (but it's hard to tell whether it's just spit or a real cough). Mike went in to work today, but Grandma came by to visit and Reagan was one happy little camper. She's such a stinker. I was holding her, no smiles no nothing, she was just laying on my shoulder. My mom walks in and picks her up and she's all smiles! I don't ever feel like she gets that happy to see me. Maybe it's because she's rarely (if ever) away from me! Oh well, it's still nice to see her respond that way to anyone really. She really seems to be more aware lately (except for her sick days). For a while it was like she was always in a fog, but I think since taking her off the vigabatrin (and experiencing a decrease in seizures) she is showing some promise. I can only imagine the improvements we'd see with her seizure free! Unfortunately, today she's actually had an increase in seizures. I hope it's just temporary, a result of whatever virus she's battling right now. Please keep her in your prayers. She needs to get over this junk so she can get back on track with having LESS seizures. I really want her feeling better by her birthday next Saturday. Lots of prayers needed!

Saturday, March 14, 2009

Tummy pains

Reagan had a great night last night. She slept straight through til 8:30am. It was wonderful. I only woke up once to her making sucking noises, but thankfully she didn't wake up. We haven't seen any more fevers today and she's been in good spirits most of the day albeit a little droopy. You can just tell she doesn't feel well...she's sleepy but unable to take any real naps. She still seems to be having some tummy problems, she gets super fussy and starts crying every time she passes gas. She had an incident tonight where she was crying in pain because she needed to go and then all of a sudden she started throwing up. Ugh. Throwing up is just the worst! I hope we can get to the bottom of this and soon. Please keep her in your prayers! Her neurologist called to check in with us today (he must have seen that we came in for blood work). He mentioned that we could possibly decrease the Topomax dosage (to avoid the risk of acidosis), but I don't want to make any changes just yet because we have been seeing less seizures overall since that last increase. If the Topomax is in fact making her acidotic (we won't know until the results are in), they can give her some sort of base to even out her body's pH. We'll see.

Friday, March 13, 2009

A trip to the doctor

Reagan had a rough night last night. She was up a lot...her most significant stretch of sleep was from midnight to 4am. She was very irritable, lots of fussing and whining. I did my research last night and I found something in my notes. These throwing up incidents started a few days after her last Topomax increase (up to 90mg 2x/day). She's on a fairly high dose of Topomax now and metabolic acidosis is always a concern at higher doses (and throwing up and diarhea are both symptoms). I definitely don't think she has full blown acidosis, but she could be slowly headed in that direction. So I got on the phone first thing this morning trying to get her in to have her levels checked. I couldn't get a hold of anyone in the neurology clinic and her neurologist is out of town again (big surprise), so we went in to the pediatrician's office instead. They checked her over for strep and the flu (she tested negative for both) and said that yesterday's fever was probably the result of a virus (and could potentially get worse before it gets better). They ordered labs to check her CBC and electrolytes and we went over to Texas Chidren's to have those drawn by our favorite phlebotomist (see picture below taken after her blood draw which explains Reagan's lack of cooperation in the picture). It's funny, when we walked in today she said that she was just thinking about Reagan yesterday and the fact that she hasn't seen her in a while is probably a good thing. She's just so sweet and so good at what she does. We're so thankful we found her. They called us this afternoon with the results of the CBC...everything looks OK, the white blood cell count is a little off which would suggest a virus. We think they ordered a complete metabolic panel, which takes a few days to run, so we probably won't get to the bottom of the acidosis possibility until Monday. On a good note, Reagan did seem to be feeling a little better as the day wore on today. You can still tell she's not feeling great, but she's been a little more vocal and energetic tonight. Hopefully she'll sleep tonight for us. I am so pooped! Please continue to keep Reagan in your prayers...she definitely needs them!


Thursday, March 12, 2009

Sick girl

Well, I'm afraid that Reagan might be officially sick. The bi-weekly throw up incidents are now happening every other day and today she was running a fever all day long. This may explain the fussiness and increase in seizures we've seen the last few days. She slept well last night and looked to be feeling fine when she woke up this morning. I had to take Bear to his yearly doggie checkup but by the time I got home I could tell something was not right. Her eyes were red and puffy and she wasn't opening them all the way (but true to form she was laughing and carrying on for Grandma). When I held her I could tell she wasn't feeling well and when I checked her temperature, she was running a 101 fever. She still managed to show some personality for Grandma (talking up a storm) and she wasn't having a problem eating (drinking), so I just gave her some tylenol and kept an eye on her. But later on when she woke from her afternoon nap her fever had increased to 102.5. Again, more tylenol and this time it seemed to help. It finally went down to 99.5. So I thought we were headed in the right direction until tonight when I tried to feed her a bottle and she threw up all over the place the second I put it in her mouth! Poor thing! Throwing up is a miserable thing and she's been doing it way too often. I think this warrants a trip in to the doctor. Unfortunately, her pediatrician doesn't work Fridays, so we're just going to have to see someone else in the practice. I'm going to do my part and try to do some blog research to see if I can find some clue in my records...we need to get to the bottom of this ASAP. Please, please keep Reagan in your prayers this weekend!

Wednesday, March 11, 2009

A button for Reagan

We had another mishap last night with Reagan. She took a late nap but then wouldn't wake up...it was 9:30pm or so by the time we finally got her to snap out of it. Well then of course she didn't want to go to to sleep. I stayed up with her until Midnight and she was looking pretty sleepy so I tried to lay her down in her bed. I got all the way down the stairs when I heard her screaming at the top of her lungs. I ran back up and tried to console her (without picking her up) but she was hysterical. I picked her up and she was so upset and so frantic that she threw up all over the place (I think she choked on some spit)! So here I am upstairs, screaming for Mike to come help me, and nothing. He didn't hear a thing. Finally she stopped and I ran downstairs and handed her off to him so that I could go back up and clean up the mess. First of all, let me just say that I'm getting sick of all the throwing up! I don't know what it's all about but I'm sick of it! And second, she was just plain and simple throwing a fit! She did NOT want to go to sleep and she was crazy upset! What am I going to do with this girl?!?!? We got up bright and early this morning and headed into the med center for her 3week post op appt for her eye. We get there, I check in and for some reason I look at my calendar and see that we arrived a whole 1hr and 40min early for her appt!!! Ugh. I sure wish I would have known that. It would have been so much easier to have left later! Of course we didn't get to see the doctor until after our scheduled appt time, so that was a nice long wait. Then to top it all off...the doctor was the most rude person I have ever dealt with in my life! I don't know if she was just having a bad day (and took it out on me) or what, but she was actually yelling at me saying that I was not answering her question correctly! I was shocked (and so were the other people in the room)...I can hardly wait for her other doctor to come back from maternity leave! So long story short...her eye looks good and it's healing well. Apparently the gash we are seeing is perfectly normal. And she has been such an angel today! So well behaved. After her eye appt, I had to go get some routine bloodwork done and she was just wonderful through it all (she probably enjoyed watching someone else get their blood drawn). As much as I hate to say it, seizures have been on the increase today. I have no idea why but I definitely do not like it. Please say some prayers for her. She needs less seizures, not more!

*I now have a button for Reagan posted at the top of the blog (courtesy of Taylor, one of Zoey's super sweet sisters). This will help to get as many people praying for Reagan as possible. If you'd like to add her button to your blog/website here are the directions. 1.Click layout 2.Click "Add gadget" 3.Select Html/Java Script 4.Copy and paste the code under Reagan's Button into content box 5.Click Save. Thanks again to Taylor for doing this for us!

Tuesday, March 10, 2009

Fussy but cute

The fussy baby reared her head again today...and this time it started first thing in the morning. She slept well enough last night (only waking up once with a nightmare) but she woke up a little monster! The constant moaning and groaning...it's like fingernails of a chalk board...it was driving me CRAZY. I'm guessing it's tummy related because she's had quite a bit of gas. This lasted all morning but she did wake a little happier after her afternoon nap. I was a little nervous about how she'd do during vision therapy, but it went well with only one outburst from Miss fussybutt. Then Grandma stopped by and of course that went well! She was so cute... laughing and carrying on with Grandma I had to videotape it...see below. She's been quite a character tonight, talking up a storm! She's a handful!



video


It's funny, yesterday the orthotic place called me to do a customer satisfaction survey and I let them have it (talk about timing)! I told them how shocked I was to receive a $8800 bill for orthotics when we were never given any sort of notice of how much they were going to cost and Reagan has never even been able to wear them! The lady was very nice and told me that she was going to speak to the owner about it. Then this morning I got a call from the orthotist and he said that they were going to forgive the remainder of the bill ($5200 out of pocket). He said it was basically their fault for not letting me know ahead of time that my insurance has a $2500 limit and they take full responsibility and will just write it off. He said that the owner would like us to come back in so he can look at the braces and see if there's anything else they can do to them to make them more comfortable for Reagan (so she can actually wear them). Praise God! Seriously, I couldn't have asked for a better outcome! I prayed about this and knew that it was out of my hands (where am I going to come up with an extra $5000) and God delivered! Awesome!

Monday, March 9, 2009

Much better

Reagan just continued to get worse last night. The whining and moaning turned into full out screaming and crying! She had two dirty diapers...so maybe it was her tummy. She also threw up again but this time it was as soon as I put the bottle in her mouth, so reflux couldn't have been to blame. Maybe it is related to her teeth, her gag reflex could be over sensitive and causing her to throw up. Who knows, we're always guessing with this kid. She was absolutely miserable for several hours and didn't settle down at all until she finally fell asleep around 10pm. Poor thing, she was in a lot of pain. She woke back up right as we were settling into bed but she seemed to already be feeling better. I fed her a couple ounces and then put her back in bed. She slept through til 6:30am. She was up only about an hour or so and then went back to sleep until we had to leave for therapy (I wish I would have slept with her). She was in such a great mood today, I knew she would do well in her sessions. She also seemed less spastic today, she wasn't constantly going into extension and her feet and hands were much more relaxed. In OT she was bearing weight on her arms really well while maintaining very good head control...and smiling the whole time. Then in PT she was walking like a pro in the walker. She was taking great steps on her own and made it all the way across the gym and halfway back with little assistance. She didn't take much of a nap this afternoon so hopefully she'll go down and sleep through the night tonight. Her neurologist called to check in on her (now that he's back in town) and there's really not much to report. Seizures have been about the same since starting the Lamictal (although there seems to be a slight increase yesterday and today). It's unlikely that we would see any response to the Lamictal right now with the dose so extremely low but as long as we don't see any negative reactions we'll continue with the slow steady increase. We definitely need continued prayers in this area. Reagan needs the seizures to stop! Prayers for NO seizures.

Sunday, March 8, 2009

Crankies

Reagan had a good night's sleep last night (probably because Mike agreed to get up with her if she woke up...he's always lucky like that), but somehow she still woke up on the wrong side of the crib. She has been such a cranky butt today. Lots of whining and moaning. We had two different showings today one from 11:30-1:30 and one from 3:30-4:30, not exactly convenient. For the first one we drove around and went to lunch and then for the second one Reagan and I went to visit Jackson and Meghan (who is also our realtor) while Mike played golf. I felt bad because Reagan was such a turkey the whole time we were there! It sounds like teething to me (the moaning and groaning). Those two teeth still have not broken through yet! She's been SO spitty and foamy lately, I think that's got to be it! But then again, it could always be her tummy, who knows. Something is definitely bothering her and it's pretty bad because she's had several breathholding incidents today because of it. I did find something that I have to get her for her birthday while we were there. Elmo live. She LOVES that thing. She was just mesmorized by him. I think he's visually interesting to her because of his red color and big white eyes (and the fact that he moves) and then she also loves his high pitched voice. So she's getting Elmo for her birthday...don't tell her (I actually already ordered it online). Hopefully she'll like him on her birthday as much as she did today! I really didn't want to buy any toys for her because she doesn't need any more toys and we're trying to sell our house so we have no where to put them! I'm actually encouraging people coming to her birthday party to donate money to her equipment fund instead of buying presents because she is so extremely hard to buy for (most people want to buy her age appropriate toys and that just doesn't work for her) and she already has more toys than she could ever possibly play with. Hopefully we'll be able to combine everything together and buy her something that she really needs. I've been wanting to get her the childrite chair (which is basically a bigger version of the bumbo seat for special needs kids) but it's so ridiculously expensive I haven't been able to get it yet. Everyone I know that has it, loves it. So we'll see...maybe she'll be getting one of those for her birthday too. As I type the whining continues. Please keep her in your prayers...I think it's going to be a long one tonight.

Saturday, March 7, 2009

Information overload

I had an early day today so for good measure Reagan was up last night giving me a hard time. She did sleep in late, but some good that did for me! I went to a conference/resource fair for parents of children with disabilities...it was halfway across town and I had a heck of a time trying to get there. It was an all day affair with four different sessions throughout the day and tons of seminars to choose from...I went to two geared toward maximizing the resources available to your child, one on feeding, and one on estate planning. It was informative, but also a little overwhelming. It will probably take a while to go over all the information and handouts from the classes. While I was gone Grandma and Mike tag teamed it with Reagan. Grandma had the first shift and she said Reagan was just a doll. She put her hair in pigtails again...too cute! I called to check on her after the first session and my mom notified me that I better take good care of myself, because without me this child would starve. She had a very difficult time getting her medicine in her and trying to get her to drink her bottle (no surprise). Then Mike took the second shift but was unable to get Reagan to nap (or eat). All in all I think it went well. I thought about leaving early a few times, but Reagan made it through the day without me OK (although she was definitely underfed). When I got home at 5pm, I was missing her and she was definitely happy to see me! Such a cutie.


Friday, March 6, 2009

Insanity

Reagan slept through the night last night and it was heaven! I needed that. And so did she. Today was a busy day. It started off with vision therapy at 8:30am. Then feeding therapy at noon and occupational therapy at 1. Three therapies in one day is a little much, but she's managing to do it with flying colors (although it does occasionally interrupt a well deserved nap). I'm a little irritated with our insurance lately and I'm eagerly awaiting when some of these benefits from MDCP kick in because the stress is really starting to get to me! I still haven't heard back on the issue of Reagan's chair (the fact that our insurance is now saying they won't pay any of it because we've already met our yearly DME allowance and we owe over $5000 even though the quote on the chair is only $3800). Then this week I get the bill for the night splints...the ones that we've been back and forth at least 10 times because they haven't fit her properly from the get go...$8,800. Seriously, these people must be smoking crack! These things, even if they fit properly would have to be redone every 6months due to growth. They are insane. They billed the insurance for $8,800, the insurance paid as much as they are willing to pay and we owe the remaining $5200. I called them this morning and told them there is no way we are going to pay that. They said..."Oh, usually the insurance pays all of it". So I guess that makes it OK for them to charge a fortune for them?!?!? I don't think so. They were going to look into it and get back to me. Then I was also notified that the second round of Botox (which Reagan obviously really needs) was not approved either. We were supposed to have that done next week. So that's another month or two for them to write up an appeal which may or may not be approved. Ugh. And one more kick in the butt, we just found out that Reagan is not on our vision OR dental insurance (and we can't add her until open enrollment in Sept)! So unless Medicaid picks her up soon, we're going to have to delay her dental appt too! Very frustrating. In all of this they forget who they are supposed to be helping here...no one cares about the child that really needs these procedures/equipment. Please keep us in your prayers!

Thursday, March 5, 2009

Home at last

Oh last night was not fun. Reagan just could not stay asleep. She really took no naps yesterday so I think she was just over tired and couldn't settle down. She first fell asleep at 9pm, then woke around 10:30pm crying, then woke again at 1:30pm crying. After settling her down, she was happy but wide awake. I tried to feed her a bottle but she wasn't having it. At this point Grandma crawled into Reagan's elevated cage/crib and we pushed the twin beds together so she could sleep beside me (talk about sacrifices...Grandma is just too good to us). This morning's breakfast wasn't so bad...how can you mess up eggs and bacon. Then they let us leave early (thank God) and we were on the road by 9:15am and back home by 11am. Home sweet home.We washed up immediately...nursing home smell (urine) is not something you want to hold onto...and Reagan finally took a good long nap. Poor girl. We pushed back her PT til later this afternoon to let her rest a little longer, but she was still a little groggy. This whole process took a lot out of her...and me. It's unfathomable to me that some people actually put their children in homes like that. What a horrible existence. There were 3 full time children residents at this home (and 40 or so elderly) and I have no idea of their parents circumstances and why they are there but you just want to take them home with you. It's so sad. No one wants to go to an old folks home EVER, but imagine spending your whole life in one. Just horrible. So in another two months or so we should have completed the whole MDCP process and finally get some of these benefits we hear about. I guess it was worth it to have bypassed the 6year wait but it was not fun at all (and I really owe my mom for coming with me). I can hardly wait to climb into my own bed and actually sleep tonight...Reagan willing. Please continue to keep that little princess in your prayers!

Wednesday, March 4, 2009

No picnic

Reagan slept well last night and woke up ready to go at 6:30am. We left the house a little late but still managed to get to the nursing home exactly on time. It's pretty much what you would expect. There's a faint (although ever present) smell in the air and the accommodations are what you would expect at the cheapest of motels. And the food, probably what they eat in prison. Everyone has been really nice though (and in love with Reagan), so that helps a little. We only left once to go pick up a few necessities so the time has gone by pretty slowly. Luckily Grandma brought her computer (and wireless card) so we've been able to check email and I can update the blog. Reagan has been good all day today, including the 2hr drive here. She's actually been awake nearly all day long, she took one 30min nap around 1pm but that's just not enough for her. I'm trying to get her to stay awake for a few more minutes so I can give her her nighttime dose of medicine. She had another throwing up incident tonight and threw up the entire bottle I had just fed her. So frustrating. We HAVE to get to the bottom of this! I asked her pediatrician's nurse about it and she suggested that it might be behavioural. Reagan's way of saying she doesn't want anymore. No, I don't think so. My gut says it's reflux related. It always happens at the end of a bottle. I think it starts coming up her throat and she chokes on it and throws everything up. Now...what can we do about it? We need to see if maybe there's something else out there (other than prevacid) that could help her. Well, I've got to go. Reagan needs her medicine and we need to attempt to some sort of sleep in this place. Please keep us all in your prayers...we need rest and we've got a long drive back home tomorrow!


Tuesday, March 3, 2009

24 hr stay tomorrow

Reagan slept well last night waking at 6am...she's our little alarm clock. She fell back to sleep in our bed til about 8am, just like yesterday. Very nice...loving the extra hours of sleep. Nothing too exciting today. We had the ECI developmental coordinator come by this morning and then the vision teacher this afternoon. At least we were able to stay put and we didn't have to run to and from therapies today. Reagan had some good tummy time this afternoon (hence the pics). She was mild mannered most of the day, but she's been a little spit fire tonight! Lots of whining and fussing! Hopefully she sleeps well because tomorrow is going to be an interesting day. We're going to do our 24hr stay in a nursing home in order to bypass the huge waiting list for the Medically Dependent Children's Program (MDCP). Raising a child with special needs carries a huge price tag and programs like this are supposed to help parents with some of the burden (such as providing respite and medicaid to families that otherwise would not qualify for it). We're going to Groves, TX...about two hours away near Port Arthur, TX. This particular home works closely with MDCP and we were told by reputable source that it was the least institutional of homes to do this stay. So we check in at 10:30am and check out at 10:30am the next day. A full 24hrs. Initially we were told we wouldn't have to stay the entire time, but it looks like we're going to be stuck there. Mike couldn't (or wouldn't) take two days off work to go, so my mom is coming along with me and Reagan. Thank goodness I have company because I think we're going to get a little bored sitting in that room (I'm told with no TV). The lady told me that we can sign out and drive around town if we want to get out to go shopping or out to eat (but why do that when they are providing all meals...yum!). Anyway, it should be a interesting experience to say the least. And not cheap either. We have to pay $200 out of pocket for our stay (which we're supposed to get back at some point but we'll see). I haven't had the best interactions with our MDCP caseworker, so I'm skeptical at how well he's going to be working in our favor for anything at this point. Hopefully I'll be able to get some sort of internet access so I can update the blog and let you know how it's going. Please say some extra prayers for us all. A new environment is never easy but a nursing home...doesn't sound pleasant.





Monday, March 2, 2009

Starting Lamictal

Reagan slept from 11:30pm to 5:30am last night, which I was very happy with considering the foul mood she was in when she went to sleep. Thankfully she woke up feeling much improved. I fed her a bottle and two dirty diapers later (which may explain last night's fussy behavior), she fell back to sleep in our bed. We both got a little extra sleep, which was nice because she usually won't sleep with me beside her (the little turd). Then we headed off to OT and PT. Everyone is just so impressed with her improved head control...it really makes a huge difference in everything she does (especially therapywise). She's reaching out and touching things sometimes on command, which is something she wasn't doing even a short while ago. She's turning to your voice and visually she just seems to be more attentive than before. I don't know what it is but my best guess is getting off of the vigabatrin! I don't know if it's the decrease in seizures since getting off or maybe just the doping effects of the medication, but she's shown definite improvement since weaning down. Which makes me very hesitant to start anything new. That's really the reason for the procrastinating in picking up the new prescription...then finding out it wasn't there to begin with. Turns out the 2mg tablet the doctor prescribed is no longer available to the public. You can only get it directly from the doctors office (in sample form). So after much hemming and hawing the nurse decided she would give us some samples so we could get Reagan started on it. But she was going to talk to the doctor about it "because they can't provide us Lamictal for the entire length of Reagan's treatment"...she's a sweetie! So tonight's the night. We're starting her out on 1mg every other day for 2 weeks. A very conservative dosing schedule, but they are serious about this rash side effect (the proper term is Stevens-Johnson Syndrome and it's life threatening). Reagan had another of the throwing up incidents tonight while I was trying to get her to finish her bottle. I asked her feeding therapist about this last week and she said that it could definitely be teething. In addition to the huge amounts of spit she's putting out right now, her mouth is also more sensitive which could trigger a gag reflex. It always happens when I'm trying to feed her (usually the last part of her bottle...the part she doesn't want) and it's quite frustrating because she basically throws up everything I've been working to get her to drink. I'm going to put in a call to the pediatrician tomorrow just to run it by her, but I'm pretty sure there's nothing we can do and we just have to work through it until these stubborn teeth work their way out! Please continue to keep her in your prayers!

Sunday, March 1, 2009

Upset

Despite a good night's sleep last night, Reagan has been a huge challenge today (and continues to be). She is SO fussy and SO irritable! I think it's mainly teething related but who the heck knows. All I know is the whining and crying gets old really quick and both Mike and I are getting a little frustrated with her. We've even seen a few of the breath holding episodes...where she turns completely purple and stiff as a board...and we haven't seen those in months and months. Something is definitely bothering her and I hope we figure it out soon. I don't have high hopes for a good night's sleep tonight, so please say a prayer for me and my patience. Also, keep Reagan in your prayers because tomorrow we should finally be able to get the Lamictal started. Although her seizures are much improved, they are still pretty frequent in the mornings after waking up and they need to stop altogether.