Monday, November 30, 2009

In patient again

Reagan had a great night of sleep last night. She went down around 11pm (early compared to 1 or 2am) and slept through the night. It was wonderful. I had her hooked up to the pump so she got a nice steady drip of pedialyte through the night. That's an extra 8.5oz...which is half of her usual daily intake. Not too much going on today. Lots of phone tag. The neurologist thinks it's unlikely that we'll be able to get her in for a 24hr EEG before her surgery, but we're still trying. The only way to get one ASAP is by being in patient. So we waited for "the call" to let us know they had a bed available...and finally at 4:45pm they called to say that they had a room. We waiting til Mike got off work at 9pm to head over and we were in our room by 10pm with Reagan fast asleep. I doesn't look like they are going to do anything tonight (not even put in an iv), so I'm not really sure why we had to come. Things are so uncoordinated around here. They act like they didn't even know we were coming in! I think the main issue is that our doctor is affilitated with a different hospital, so she's used to dealing with things a certain way and apparently TX Children's does things a little differently. It's always super complicated. We do have a definite time set for her g-tube surgery. Wednesday at 8:15am. It's soon but I guess it will be good to get it over and get this ng tube out of her nose. I'm still leaning toward not doing the fundoplication and unless someone is really convincing, we'll probably steer clear of that for now. My biggest concern is really the gas related issues kids experience with a fundo. Reagan has so much pain associated with her gastrointestinal system, I just don't want to do anything to add to that. Speaking of pain, she's been having pain with urination. It's very strange, something we've never seen before, but we noticed during her first hopsital stay and it's still going on. It was actually the reason her pediatrician checked for a UTI (which was negative). I'm wondering if it might be kidney stones? Topomax, which she's been on for over a year, can cause those. And some of the symptoms are stomach pain, nausea, vomiting. You get the picture. The plan is to get an abdominal ultrasound tomorrow to rule that out. So that's all for now. We're here and just playing the waiting game. Please continue to keep her in your prayers, especially for a smooth surgery Wednesday with no complications.

Sunday, November 29, 2009

Sweet girl

After an hour or so of screaming and crying last night, Reagan finally settled down but did not want to go to sleep (big surprise). As I was trying to re-tape her tube she managed to pull some of it out and I decided to just take it all the way out and give her a little break from the tube up her nose. She greatly appreciated it and was super happy and sweet afterward. With the tube out of her nose, I was able to just put her in bed and let her fall to sleep on her own. Who knows when that happened...I didn't even put her down til 1:30am and she was wide awake (she's really fighting sleep lately and still not taking any naps). Then around 5 or 6am I could hear her in her bed making noises so I picked her up and put her in bed with us. She was so smiley and so giggly it was hard to go back to sleep! The good mood continued all day. I ran to the grocery store only to come back and see that Mike had taped the tube to the top of Reagan's nose (so there is no way she could pull it out)! Too funny...but it works. I've been having to watch her like a hawk (literally every second) because she's really working hard to get those hands up to that tube. Hopefully that's a good sign. I'm still not sure what the plan is for tomorrow. I know Reagan's pediatrician wants to talk to her neurologist before admitting her. I'm guessing she won't be admitted until late afternoon but who knows. I'm hoping they'll be able to get her in for a 24hr EEG before the g-tube surgery. I would sure like to know what's going on in that little head of hers. I'm still really not sure what to do about the fundoplication (any advice would be appreciated)...I was really leaning toward not getting it, but her pediatrician seems to think that it may be the only way to stop the vomiting. Although, knock on wood, it's been almost 4 days since it last happened (but she has been only getting pedialyte and a tiny bit of formula). Please keep all of this in your prayers. Especially her doctors (and her parents)...we need guidance in making the best decisions for Reagan's care.


Saturday, November 28, 2009

Ketosis

Another killer night last night. Reagan was up til 1:45am fussing and whining. It was brutal. At least she slept in a little. We were supposed to go in to the pediatrician's office this morning to get Reagan checked out and drop off a urine specimen but instead the doctor came by our house!!! Yes, that's right...I could hardly believe it. She called and asked if we wanted her to stop by our house (since she lives in the same area). I said...heck yeah! I wanted to have Reagan's urine checked just in case to make sure she didn't have a urinary tract infection (UTI) since it can cause some of the symptoms she's been having. Turns out she does not. Too bad, that would have been an easy fix. She said she does have a very high level of ketones in her urine though. Which is fine if you are on the ketogenic diet but in this case it just means that she's in a fasting state (unintentionally). She hasn't been getting anything other than pedialyte lately and that's just not cutting it. She's already lost 5lbs since this whole mess started. That's A LOT for a little one. She's so scrawny right now, so bony, it makes me very nervous. At least today she did get plenty of fluids. I used the pump last night so she got an extra 7.5oz of pedialyte while she was sleeping (and 23oz total today). She was super sweet again today, great all day long that is until tonight. She fell asleep at 10pm and by 11 she woke screaming with tummy pains. Poor thing. Why does her tummy give her so much grief. Please continue to keep her in your prayers...

Friday, November 27, 2009

Staying home

We finally got a good night's sleep last night. Definitely needed that to recharge after the last few days (or few weeks). We thought today would have us headed into the hospital but after a talk with the pediatrician we all decided it would be best for us to sit tight at home (as long as Reagan stays throw up free) and wait til Monday to go in. As many of you know, hospitals more or less shut down on the weekend (no specialists, no tests, no nothing) and even more so on holiday weekends. So that's the plan. To continue with the around the clock pedialyte. This afternoon we introduced some new formula, Isomil DF (diarhea formula), mixed half and half with pedialyte. She seemed to tolerate it well enough. I did tell her pediatrician I wanted a pump because if we were going to stick it out at home then we should have a way to continue the hydration during the night. By early afternoon we had a Kangaroo Joey pump delivered to the house. It's very easy to use and similar to the one she had in the hospital. We're going to try using tonight while she's asleep to give her a slow steady amount of pedialyte through the night (30ml/hr). Hopefully she won't pull her tube out during the night. That's a big worry I have. Today she's been trying her hardest to work her finger up there to get a hold of it. I think we should be OK as long as she stays asleep. Speaking of sleep...she's fighting it big time. She's been up all day long again and does not want to go down for the night. She's been in a pretty good mood all day today but the last couple hours she's really been whiny. You can tell she's so tired but she's just laying in her bed arms flailing and babbling away. Someone needs to tell her it's bedtime.

Thursday, November 26, 2009

Not so bad

Thank you all for your kind thoughts and prayers...it's appreciated more than you'll ever know. Last night was rough. Reagan continued the crying and would not fall asleep. She ended up in our bed where she tossed and turned til 2am at which point she was just awake. Wide awake and upset. We got up and gave her some formula. She held it down for about an hour and a half and then it all came back up. I'm sure the poor thing is beyond hungry. Nothing will stay down except pedialyte and that really provides no calories whatsoever. She's just skin and bones now. We have GOT to get her eating again. I think last night we really came to terms with getting the g tube. We would have done it today if possible. She's so miserable with the ng tube, I don't know if it's hitting her in the wrong place or what, but it's really bothering her. This morning I looked at her and realized her tube was missing! In all of the chaos of last night Mike must have gotten it wrapped around his arm because it was twisted up underneath him and there she was just smiling away. For the first time in days, I saw a glimpse of my sweet girl. Today really went better than we could have ever imagined. I started the day off in tears and packing our bags for the hospital with the intention of heading over there as soon as lunch was finished. I spoke to the doctor on call last night who just told me to stick with pedialyte and try giving her 15ml every 15min or so. So this morning (after I got her medicine down her and inserted a new ng tube) I started the pedialyte regimen. I managed to get a total of 11oz down her throughout the day without her throwing up. Her pediatrician said that if we could get through the day today without any vomiting then we could stay home another night. We did it! Reagan was up all day long...not a single nap...but somehow she was content and happy all day long. It was such a relief. Still not back to herself, but loads better than the last several days. I guess it was a Happy Thanksgiving after all. Our plans are to get admitted tomorrow (without having to go through the ER) and have her on iv fluids all weekend to give her tummy some time to recuperate. Then probably sometime next week, hopefully as early as Monday, she'll have the g-tube surgery. I'm just ready to get this thing out of her nose. We still really have no clue what's causing her to vomit and refuse to eat. The only idea we've come up with is that it's the Banzel she's taking for her seizures (the only medication she's ever taken that has been able to significantly reduce her seizures). We saw online that 17% of the children taking it had vomiting (compared to 8% with placebo). So despite my better judgement and my severe hatred of seizures, we decided to reduce her dose out of desperation. We moved her back down to 1.25pill 2x day (500mg/day). I'm not sure if that's enough to make a difference but it wasn't until a week after this last increase that we encountered all of these eating problems. Please keep it in your prayers that this will do the trick and stop the vomiting (without increasing the seizures...very important).

Wednesday, November 25, 2009

Happy Thanksgiving...we'll see.

Today has been a horrible day. One of those days you just want to throw in the towel. I'm done! That's it! Reagan cried nearly nonstop all day. This morning she cried from the second she woke up til she went down for a nap at 2:30pm. Literally nonstop. I changed out her ng tube myself this morning during her crying rampage. I was hoping it would make things better, but no such luck. She woke up from her nap and continued crying. She didn't stop until Grandma arrived. Then for about 1hr or so she was content. Content as in not crying, but still not herself. Then the crying started back up and about 30min after a feeding, she threw up again. The vomiting is probably the worst thing to deal with. We don't know why it's happening, we don't know what's causing it, nothing we do seems to help! We just feel totally helpless. The doctors don't have a clue! We were in the hospital for an entire week and they didn't do any tests whatsoever...just dismissed everything and said it was a virus. I called Reagan's GI doctor today to see if maybe we should try switching formulas to see if that helps. She agreed that it was worth a try, so we picked up a couple of cans of Neocate junior from the office and started her on it. First feed went OK, second came back up. I don't think we can necessarily blame it on the change of formula, although it was chocolate flavored and quite gross looking (like a thin yellowy coffee). I called the pediatrician's office and the doctor on call suggests to put her back on pedialyte. Problem is, she's been throwing up for weeks, we can't just keep her on pedialyte! Ugh. I feel so helpless. I just want my baby back. She's miserable, tense, making weird tongue movements...something is not right. Something is very wrong. We need some prayers...lots of prayers. Guidance for us, for her doctors, and of course drastic improvement for her. We're supposed to host Thanksgiving tomorrow at our house. I'm praying for a Happy Thanksgiving...

Tuesday, November 24, 2009

Oh no...not again!!!!

On a good note, Reagan did sleep last night. She went to bed sometime around midnight (it didn't feel that late but I guess that's because we've been up til 1 or 2 every night) and then slept through til 8am. The bad part is she woke crying...went to bed crying, woke crying. Not good. She cried nonstop for a couple of hours. She had some gas, so maybe that was it, who knows. We had an 11:30 appt with pediatric surgery to discuss the possibility of a g-tube. Thankfully she held it together in the car and Daddy came with us so that made the 1+hr wait in the exam room bearable. The doctor just told us a little about the surgery, g-tubes, g-buttons, etc... He mentioned a fundoplication, since Reagan still struggles with reflux, but I just don't know about that. I've heard so many bad stories about those. It's hard to say where I stand about getting a g-tube. I absolutely positively HATE the idea of having to subject Reagan to yet another procedure but it just doesn't seem like she's going to turn that corner and get back to where she was before. I don't know what happened. I don't know what made her just stop eating like that (and start throwing up). It's just so frustrating because we have NO answers. And today...more projectile vomiting. Ugh. I really thought she was over that. It came from out of no where. She was finally in a decent mood, we were outside with the dog and I was just holding her and POW...throw up all over the place. I ran back in the house where she continued to throw up, coughing it out in spurts. All over her, all over me. Poor, poor thing. Afterward she was just not feeling well. I was afraid she was going to do it again but she managed to fall asleep. Then she woke up screaming and crying. Gnashing her teeth and writhing in pain. What is going on here!?!?! I just want to help her but I have no clue what's going on. We definitely need some prayers for this little one. And some prayers for our sanity. I think Mike and I are both on the verge of a nervous breakdown. Lots of prayers needed.

Monday, November 23, 2009

Tummy problems

Reagan gave me a lot of grief again last night, not wanting to go to bed in the least (see video from yesterday's post). I finally gave up and just laid her in her bed with her toys (arms flailing) and I fell asleep around 1:30ish. No clue how long it took to wear herself out and fall asleep. At least she slept in, not waking up til 9am or so. She was in a great mood all morning. Sweet and smiley. Today we resumed a normal schedule going to therapy for the first time in weeks. Reagan had feeding therapy first (much needed) and then OT. Her feeding therapist does not think her feeding issues are related to an oral aversion. She seemed to be fine with all of the oral motor exercises and tools she threw at her today. She ate some applesauce, chewed on some veggie straws and gummy bears, and didn't seem at all gaggy with the spongy toothette in her mouth. She thinks that maybe Reagan is trying to tell us something...she's sick of that bottle. I tried some more today and she's not interested in sucking at all. The second it gets in the middle of her tongue, she clamps down and bites it. Frustrating. I spoke to her neurologist today about the crazy arm/leg movements. He thinks it's something called chorea. He said as long as it's not bothering her or interfering with her daily life, then we can just keep an eye on it and not treat it. He does not think it's seizure related but it's obviously neurological. We could try increasing her morning dose of Clobazam to see if that helps but I don't know if I want to do that just yet. This afternoon the good mood was spoiled by a nasty bout of tummy pains. I think it's time to start adding back the Miralax. Poor thing. She was miserable...but she did manage to get it out so I was hoping her tummy would feel better. No such luck. She took a super long nap (the first nap she's taken in days) and then woke crying. She's been fussy/whining/crying ever since. It's going to be a long night...

Sunday, November 22, 2009

Hyper girl

Reagan has been super sweet again today. This morning she was very mellow and cuddly and tonight she's been a ball full of energy, kicking and squealing like crazy. I'm not sure what got into her, but it lasted well into the wee hours of the morning. We always worry a little when we see behavior that's so radically different, that it might be seizure related, but she sure seemed to be enjoying herself and she was cracking us up! I increased her feeds a little today and she seemed to handle it well. We're hoping to get her up to at least where she was before she got sick, if not a little more. Still not much for eating by mouth but she does seem to be getting better at taking her Topomax/Nexium in applesauce (the Banzel/Clobazam go through the tube). She was less than interested in taking a bottle by mouth, but at least it didn't trigger her gag reflex so that's a little progress. No naps again today. She was up til 1am last night and then slept in late this morning. It's crazy. She needs more sleep than that. Enjoy the video...don't forget to pause the music at the bottom of the blog.



Saturday, November 21, 2009

Fighting sleep

Reagan didn't want to go to sleep last night. This is a new trend...the last several nights I've been up until midnight or later with her. Last night she didn't want to go to sleep in her crib so we put her in bed with us where she fussed and fussed. She'd fall asleep for a short while and then wake up fussing again. Finally around 4:30am she was out so I got up and put her in her own bed. Today she's continued the trend and has fought sleep all day. That's right...not even one nap all day long and she's still going strong right now at 11:45pm. She's fighting it that's for sure. She fell asleep for a few minutes today on my lap but woke the second I tried to get up and move her. Despite the lack of sleep, Reagan has been a total doll all day today. Super sweet and even a little talkative. I'm hoping maybe she's finally starting to feel better. My Dad came in to town yesterday (for the weekend) and it's sure been nice to have an extra hand around. Our helper has been out since Reagan was admitted to the hospital...she was having some severe stomach pains (we thought maybe she had Reagan's stomach virus)...turns out she had appendicitis. She had her appendix removed last Sunday and will be out for a minimum of 2 weeks. It's rough because I've really become dependent on her help and with things being so chaotic lately, I could have used her help. The last two days we've stuck to tube feedings only and so far so good...no more throwing up. Tomorrow I'm going to give the bottle another try. Hopefully we won't have any mishaps. Please continue to keep her in your prayers.

Friday, November 20, 2009

Keep it down please

No more excitement since last night, thank goodness. Reagan has been a little groggy today. She slept in late and then has taken a few long naps during the day. Definitely not her usual self...although I did get a few smiles out of her. She was a little more alert tonight. Maybe it had something to do with me trying to reposition the ng tube. We need to switch cheeks every couple of days to try to prevent irritation to her skin. The tegaderm tape sticks to skin like glue (especially when you want it off). Poor thing, there's no way to remove it easily, not even with adhesive remover. I was a nervous wreck trying to move the tube to the other side (not switching nostrils...just the side of the face the tube is taped to). I didn't even attempt to give her anything (other than her medicine) by mouth today. I'm still so worried about her throwing up again. Come on Reagan, keep it down! Thank you for keeping her in your prayers!

Thursday, November 19, 2009

Not over yet

After all of the medicine drama Reagan didn't go to bed last night until midnight or so but she did sleep through til 7:30am, so that was nice. I went ahead and put the Clobazam and Banzel through her tube again but gave her the Topomax and Nexium by mouth. I can only imagine how horrible that crushed medicine must taste (the Banzel is a big pill), so I thought I'd give her a break. Everything stayed down thank goodness. She's still a little off today. Very fussy, lots of gas and one big explosive dirty diaper. Her cheek has been bright red and hot to the touch and I she's also been grinding her teeth so I think teething might be partially responsible. She seems content when she's laying on the floor with her overhead musical toy but the second I pick her up she gets fussy and starts crying. Maybe she's holding a grudge...I was the only one that was always there every time she got poked and prodded in the hospital. Poor thing. I'm hoping she'll adjust to all of this and start feeling more like herself. I miss my sweet, smiley girl. It's hard to believe that 2 weeks into this she could possibly still be fighting a virus...but tonight it happened again. She threw up. Big time. And it was totally unprompted, she was just laying on me and all of a sudden she started projectile vomiting. What's strange is that it had been 2hrs since her last feed yet she threw up a large amount of formula. I have no clue what's going on here. I spoke with her GI doctor today and she said the results of Reagan's gastric emptying scan were normal. That's interesting considering the last one she had done (while she was healthy) showed that she had slightly delayed gastric emptying. I'm still wondering if maybe we should change her reflux medication. The Nexium seemed to work well when we initially put her on it but it's effectiveness has certainly waned over time. Maybe we need to increase the Nexium or maybe we should switch her to Protonix (like she got while she was in the hospital). It's crazy because I feel like I'm the one that has to suggest these things to her doctors...why is it that they can't come up with new ideas on their own? Please keep our little one in your prayers. That tummy of hers needs a break. (See previous post for picture).
*Update- She also threw up the pedialyte that I gave her just before she fell asleep. I'm at a loss. What's going on here?!?!

Wednesday, November 18, 2009

Finally home

Reagan continued to cry and woke up several times throughout the night. It didn't help that the nurse (while very nice) kept coming in every 3hrs to set the pump for her feeds. It was a very long night. This morning we started giving her bolus feeds through a syringe (that way we won't have to keep her hooked up to a pump). It was very easy...definitely the easiest feeding experience I've ever had with her. Although I am a little concerned that the syringe might be pushing extra air into her tummy. The fussiness and crying has continued today. It could be that her tummy is just getting used to having food in it again. Thankfully she hasn't had any problems holding it down. That's a good thing. They went ahead and agreed to let us go home today. Hooray!! We're so happy to be getting out of the hospital. The incompetence is overwhelming (and scary). Before we left this afternoon they had to draw blood, remove the iv, & remove and replace the ng tube (the first one they put in was only a 7-day tube so it had to be switched out with a 30-day tube). All back to back to back. Reagan was not a happy camper. She cried the whole way home. She actually cried a lot today. Hopefully it's just an adjustment period. We definitely need some good days. As far as the ng tube goes...it's temporary (and Reagan is already trying to pull it out). We're going to try to live with it for now and see if we can get Reagan to take a bottle again, if not, then we will have to move on to discussions of getting a g tube (something we've fought to avoid her whole life). We just really don't want to rush into it...especially if her aversion to eating is just a result of being sick. No one really knows. Tonight she threw up just as I gave her the last bite of her medicine. We lost everything (literally) and had to start over from scratch. Topomax comes in sprinkles so I did my best to get some of it down her in some food and then I put the rest through the tube. Thank goodness for that. Please continue to keep her in your prayers. She's certainly a handful. Never a dull moment. We could use some dull moments. And some sleep.



Getting some love from Grandma.

Tuesday, November 17, 2009

Sleeping or crying

Today has been a little rough. Things got started early this morning when transport showed up at our room to take Reagan to have a gastric emptying scan before I had even given her her medicine. Then there was the issue of me having to give it to her with food. They were not happy about that, but since it's seizure medication they finally let it go. So I gave it to her and then we were rushed off to imaging. When we got there they seemed puzzled as to how she was going to get the radioactive material down, since they usually give it in eggs (she's allergic), oatmeal (she can't eat real oatmeal), or a bottle (she's not drinking and that's why we're here). So they decided to go ahead and place the ng tube in order to get through the test and then they could just leave it in so we could try feeding her later. She did not like that at all. When they were pushing it down she was crying her head off. Then for a short time afterward she seemed OK, they wrapped her up like a mummy and started the test. Even though she had just woken up, she ended up sleeping for most of the test. That took a little stress off me. Then afterward we came back to the room where she slept and slept and slept. They came and hooked her up to a pump to administer the feeds and she never even budged. They started her off super slow, almost as if she were a newborn. It's been so long since she's had formula in her tummy, so they wanted to be very cautious (they didn't want it coming back up). They started with 30mls every 3hrs and after 3 feeds bumped it up to 60mls every 3 hrs. When she did finally wake up, she was only happy for a short while and then the crying started up. She has cried and cried and cried all afternoon. The stupid heart monitor kept going off because her heart rate was so high (I reset the limits so I wouldn't have to listen to it). I think it's tummy pains. She had some gas and a bowel movement, so that's usually a good indication. Maybe the formula is upsetting her stomach, but more likely it's just the same horrible tummy pains she always gets. She's still crying right now. I sure hope she settles down and sleeps tonight. If everything goes well, we should be going home tomorrow (with the ng tube). Please keep her in your prayers.

Monday, November 16, 2009

Sick of being here

Reagan has been a little crazy today. I guess it started last night...she did not want to go to sleep. Finally around midnight she dozed off but she woke up a couple times very antsy but I resisted picking her up and just turned on her musical toy and fell back to sleep. She woke bright and early this morning and has been kicking ever since. She's been in a good mood, very vocal and moving a lot (her arms in particular). I'm wondering if it's dystonia related? It's a crazed, high tone sort of movement...and she's been doing it all day. She never even went down for a nap until around 6pm tonight (and even then she was still very restless). She's still really fighting the feeding. How does a child forget how to eat?!?! That's really what it seems like. She's totally uncordinated with her tongue and good luck getting her to suck. She's clamping those teeth down and when I do get the nipple of the bottle in there, she does her best to push it right back out. Only a few times did I hear an actual suck, but it was very short lived. She went another day all day without vomiting, so I really thought we were in the clear, but she did it again tonight so that's beyond discouraging. Volume wise we're still very low. She just doesn't want it. The doctors are saying that maybe she still is a little nauseous and that's why she's resisting, but who knows. Problem is, she's been on iv fluids for a while now and she really needs more nutrition than that. They are talking ng tube again. Possibly placing one tomorrow and if all goes well sending us home by Wednesday at the latest. While I like the idea of going home, I do NOT like the idea of a tube hanging out of my baby's nose! The idea is that it would only be temporary...until she starts eating again on her own. But I wonder how easy that will be with a tube up her nose!?!? Ugh. It's a catch 22. I just really hope this feeding strike is a temporary thing and that she will get back to where she was before...quickly. One thing she has been doing is grinding her teeth. Not all the time but especially when you try to put the bottle in her mouth. Then today I noticed her cheeks were really pink...I wonder if maybe she's teething again and that's part of the reason she doesn't want to eat? I don't know. It's just so frustrating because no one knows. So far all tests have come back negative...they have no clue why she is doing this. Is she sick, is it behavoral? Who knows. The doctors are just guessing. Mike and I are about to go insane. We're so sick of being up here for nothing more than iv fluids. Maybe the ng tube is the way to go. To go home, that is.


Sunday, November 15, 2009

Time

Another day in the hospital. They decided to go ahead and start back up the iv today, considering Reagan only drank 1oz of pedialyte all morning. Her nurse didn't think the iv in her foot was going to hold up so she called in the pros and they started a new iv in her hand. They used a red LED light to zero in on the tiny veins in her hand...but it still took them two tries to get it. It's a good thing they started her back on fluids though because her wet diapers had decreased significantly and her level of acidosis had worsened. She actually slept through the entire process of placing the new iv...imagine that. Then she continued to sleep for another 3+ hrs. The doctors were starting to get a little worried about her. She was out cold. She does this at home from time to time so I wasn't too concerned about it. She seemed fine when she woke up, so I think she was just sleepy. Her eating today wasn't much improved. This morning she had hardly anything but then tonight she willingly drank down a 4oz bottle of pedialyte...so maybe we're finally making some progress. She also went the whole day without throwing up...another good thing. We really have to get her back to drinking formula again, she's already lost 2lbs since her muscle biopsy, and that's a lot for a little one to lose. She feels very bony. I'm thinking I'll try the formula tomorrow. Today we only did pedialyte. Everyone keeps saying that she just needs a little time. That it's very normal for kids to refuse to eat when they have an upset stomach and that we just need to give her time to recover from that. It's just so hard to be patient because we want to get back home so badly! In the end we need to do what is best for Reagan. Please keep Reagan in your prayers.

Saturday, November 14, 2009

Waiting

What a birthday. Not exactly where I wanted to spend it. Sleep was OK last night. I think they did a better job at getting to her iv before it started beeping, so that was good. Reagan did wake up once around 4am retching. Poor thing, nauseous even in her sleep. Then when she woke up this morning she did it again. She's actually been in a great mood today (all things considered). She seems a little more alert, she took one long nap instead of lots of little naps. She's had two dirty diapers both very strange in consistency...maybe an indication that this is in fact some sort of very nasty stomach virus. Feeding her is still very tricky. She seems to be more accepting of the solids...I give her banana baby food with her medicine and she clears it quite easily from her mouth. Before she was just letting it sit there and pool up. She's still clamping her teeth down (and grinding her teeth) when you try to get the bottle into her mouth. It's beyond difficult and so frustrating. Mike managed to get 7.5oz of pedialyte down her today but he's much better at fighting her than I am. I tried some of her formula with her tonight and she did not tolerate it at all (she threw up but it was mainly spit). I'm getting very discouraged. It just seems like we're never going to get her back to normal! We just want to get her eating and get out of here...but it's just not happening. Today her pediatrician came by (of course when I ran home to take a shower) and she wanted to try turning off the iv fluids to see if that would help stimulate Reagan's appetite and get her more willing to drink. So far it hasn't helped and it's irritating because now we're just sitting here in a hospital room with Reagan getting no medical attention whatsoever! Personally, I think she should be getting some amount of fluids because even when Reagan's at her maximum fluid intake she's still way below normal. I just want to make sure that whatever is causing all of this sickness is flushed out of her system. If she's barely drinking and getting no iv fluids how is that going to happen? So here we are waiting. Waiting for her to be receptive to eating again. Waiting for her to stop vomiting and retching. Waiting to get out of here. Please keep all of this in your prayers!

Friday, November 13, 2009

Still here

Not too much to report today. Reagan slept well last night, despite the fact that iv alarm that kept going off and I'd have to jump up and run outside to find the nearest nurse. I feel like we spent much of the day under the radar...without seeing anyone other than a pediatric resident who was preoccupied with another case. Finally this afternoon Reagan's pediatrician came by. She mentioned that Reagan's blood work came back from yesterday (in the ER) and she was obviously more dehydrated than she appeared. Her bicarbonate levels were very low and although they've come up, they still aren't where they should be. Then shortly before 5pm GI finally made their way up here and they mentioned that Reagan is in acidosis and they think it's due to the Topomax she's taking (compounded by the dehydration). If you remember we had some issues with Reagan being in metabolic acidosis a while back due to the very high dose of Topomax she was on at the time. We tried treating it with bicarbonate, but Reagan did not agree with that so we just reduced her dose a little and she seemed to do OK. The plan is to keep hydrating her over the weekend, they are going to give her some iv Protonix to see if that helps reduce her reflux (which may be contributing to her not wanting to eat), and then check her bicarbonate levels again. If she's not leveling out then we may have to reduce the Topomax. Which technically wouldn't be a big deal because we don't think Topomax is doing too much for her anyway, but we've seen significant seizure improvement lately (go figure), so any changes to anything would make me nervous. They also mentioned that if we can't get her to take some food (ie formula) by mouth then we may have to try a NG tube (that's a tube up the nose). I don't even want to go there. Please pray that she gets over this craziness ASAP and starts eating again on her own! I didn't even try anything by mouth today except for her medicine (which is getting increasingly difficult). She's already had 6 soaking wet diapers today. I'm just hoping these iv fluids will flush her out and get rid of whatever has been creating havoc in her system. The general consensus here seems to be that it's viral. So hopefully we're at the end of it. She had quite the bout of tummy pains tonight...lots and lots of crying. No clue how she's still having bowel movements after so many days of not eating. Mike's on his way back to our local pharmacy right now to pick up Reagan's Banzel we don't even have enough left for tonight's dose. I told them this morning that we were almost out and they said they would fill it...they failed to mention that they don't carry it in the hospital pharmacy (or any nearby pharmacy) and it would take them 48hrs to get it. The incompetence is overwhelming! I don't need this stress. Hopefully we'll be out of here soon. Please keep our little one in your prayers!

Thursday, November 12, 2009

Admitted

Here we are back in the hospital again. Reagan was a little restless last night, she spent most of the night in our bed. She woke happy but the second I put the bottle to her lips, the vomiting started (wretching really, she had nothing in her stomach). I waited a little while and gave her some Zofran, then somehow I managed to get her to take her medicine and keep it down. It was in two spoonfulls of baby food (which equals about 10 Reagan bites). It was nerve wracking...but she did it (trying to get tonight's dose down was even more challenging). Then we headed in for the pediatrician. Didn't even attempt any more fluids. So she basically went all day with no fluids (by mouth) whatsoever. She still looked good (other than some dry cracking lips) but the pediatrician decided that we just needed to admit her to get her fully hydrated. There were no available beds so she wanted us to go through the ER to get her some hydration ASAP. So we ran home and picked up a few things and Reagan actually started looking sick. In the car she started whining and looking even sicker. I sped up and got pulled over. The cop was decent and allowed me to just continue on my way (only not at 80mph). By the time we got here Reagan was really upset. We waited for a while in the ER waiting room and Reagan fell asleep. She was out cold during the initial evaluation and I guess it scared them a little because they called in a whole crew when we got to our room. I think they thought she was unresponsive, but as soon as they started sticking her to place her iv, she woke right up. It took them 6 sticks and 3 nurses before finally finding a vein in her foot (they even mentioned trying her head). Poor thing. She was SO good. She only cried with the first stick and she was smiley and even laughing at one point during the long grueling process. She did get a little fussy later on but I think she was just tired. They really pumped her full of fluids which is good because they said she was definitely getting dehydrated and needed it. Finally around 7pm they moved us to our room on the 12th floor. We were not at all successful in getting her to drink tonight...very frustrating. No one has said much about our plan of action. I guess we'll talk it over with her pediatrician in the morning. I keep hoping it's a virus and she'll just get over it and start eating again. Please keep her in your prayers.


Quick update

We're headed back to the ER. Reagan is still not tolerating anything and her pediatrician is wanting us to just admit her so we can get to the bottom of this. I'll try to do a full update tonight. Please keep Reagan in your prayers!

Wednesday, November 11, 2009

Still sick

So after our ER escapade last night we brought Reagan home and she continued to sleep (which is a little unusual for her but appreciated). She pretty much slept through night...she woke twice crying but both times she had a wet diaper that had soaked through (thank you iv fluids). When she woke up this morning I gave her a dose of Zofran, hoping it would help her to keep something down but it made her very sleepy. She didn't throw up but she did go all day long with a total of 4oz of fluids (that's with me literally dripping pedialyte into her mouth every 30min or so). We think the Zofran is responsible for the extreme sleepiness last night and then what we saw today as well. The pediatrician told us to lay off of it, because if she's sleeping there's no chance of getting her to eat. So with her drinking so little I was really freaking out. When Mike got home I put him to work (he seems to have better luck getting her to eat) and in 7min he got 2oz down her! Unfortunately it all came right back up. Then a little later he was trying to give her some pedialyte and that came back up too (maybe it's time for more Zofran). Ugh. Is this EVER going to end?!?! My poor baby. Throwing up is such a miserable thing...she's been going 5 days strong. I just feel so helpless...there's nothing I can do to help her! My thinking is that it has to be a stomach virus of some sort (obviously a very nasty one). But how long is it going to take to run it's course? Seriously. I don't want to spend my birthday weekend in the hospital! Actually, today is our 9yr wedding anniversary. We spent it at home with our throw-upy baby. We did at least get some good take-out. Yes, it's a glamorous life. Please say some extra prayers for our little one...we need her to eat and stop throwing up!!

Tuesday, November 10, 2009

To the ER for some fluids

We keep waiting for Reagan to turn that corner. For things to get better. For things to at least get back to normal. That has not happened yet. Reagan continues to refuse to eat and to throw up what she does. This morning I woke up hopeful. We all had a great night's sleep and Reagan woke up just as cute and smiley as can be. Then I started feeding her. She didn't want it (but when does she). And then it happened, projectile vomiting all over the place. Poor thing. She barely got down an ounce but she seemed to throw up 10x that. Over the next few hours I got her to drink another 3oz...but that's just not enough. She went 24+hrs without wetting a diaper and that's never a good thing. Her pediatrician thought it was time for us to just take her in and get some iv fluids in her. So off we headed to the dreaded ER. Definitely not the place I want to be with my unimmunized little one. It took a while but finally they got her back and hooked up for a bolus of iv fluids. They actually only wanted to do one bolus (270mls) but I encouraged them to do two. I don't want to be heading back up there tomorrow. They also gave her some Zofran through her iv to try to prevent the vomiting. We'll see how that works. Reagan fell asleep after about an hour of fluids and never woke back up. I did manage to get her to drink another 1oz of formula in her sleep...so they went ahead and let us go. Even after we got back home there was no waking her up. She was out cold, so getting her medicine down was beyond difficult. Hopefully she'll sleep through the night...but that may be asking too much. She's been sleeping since 6:30, so I'm not counting on it. One thing that has me really irritated...we went to the ER, they checked her out, gave her some fluids and sent us home...but no one seems concerned as to WHY is she throwing up! The general consensus is that it's been too long for this to be related to the anesthesia and since there's been no fever they don't think it's viral either. But if it's not anesthesia related and it's not a virus...then what the heck is it?!?!? They didn't even do bloodwork on her! It seems crazy to me. I'm just hoping that these fluids will flush out whatever it is that's been bothering her and she'll wake up a new girl. Please keep her in your prayers. We need a good day tomorrow...

Monday, November 9, 2009

Not sick, just allergic?

Well, we're still waiting for Reagan to turn the corner eating-wise. Today was probably the worst day yet. I tried from 10-1 and only got 2oz of pedialyte in her...and that's with me trying nonstop. That was enough to warrant a trip into the pediatrician's office. Her pediatrician seems to think this is all due to the anesthesia. She thinks Reagan is having a sort of allergic reaction to the anesthesia from last week's muscle biopsy (although I'm still skeptical). Supposedly it's fairly common in kiddos with neurological problems (she wants us to find out the anesthesia they used and make sure they don't use the same one next time). She said it takes about a week to go away but drinking plenty of fluids will help to flush it out of her system (yeah right...that's not happening). She also suggested possibly trying a small dose of Benadryl, which is usually a no no when it comes to seizures, but worth a shot considering the extreme difficulty we're having getting her to eat. I gave her 1/2 tsp this afternoon and it didn't really seem to do anything except make her a little more excitable (instead of making her sleepy, go figure). Hopefully we can keep her hydrated enough until she gets over this. This morning I was nearly in tears trying to get even the smallest amount into her! Tonight she seemed a little more receptive to having the bottle in her mouth..although she's still clamping those teeth down. She only threw up once today but maybe that's because I got so little down her to begin with. Mike got home from work and magically got her to drink down 4oz of pediasure...unfortunately I think he may have gotten a little too ambitious because she then proceeded to throw up at least half of it. Ugh. So frustrating. We skipped all therapies again today. Boy am I glad we decided to wait on the casts. Throw up and casts do not mix well. Please keep it in your prayers that she'll get over this soon and stay hydrated in the meantime! (Some random pics from this weekend)





Sunday, November 8, 2009

Bad to worse

So things today have gone from bad to worse. Reagan still does not want to eat...and she's thrown up 4 times so far! I just don't know what to think. Is she getting sick, is something wrong with her formula (is it spoiled), is she just being horribly stubborn and making herself gag??? I don't know. And the worst part is she tends to throw up when I feed her. I've become super self conscious...I'm afraid to even attempt to feed her, for fear that she'll throw up everything all over again. Oh how I hate throw up...it destroys all of my hard work! We started off the day with her regular formula but now we're back to the pedialyte again (she seems to be handling that slightly better). I did run to the store and buy a few different options to try for tomorrow. Strawberry flavored pediasure (in case she's just bored and that's why she won't eat), some Isomil soy formula, and some more of her regular soy pediatric drink. I'll put a call into her pediatrician first thing in the morning to see what she thinks. Hopefully she'll be around. It's worthless to try to talk to another doctor in the practice...there's just too much to try to explain to them. She's just so dangerously low on fluids, I'm afraid the doctor is going to tell us to take her in to the ER. I do NOT want to go there. Please, please, please keep her in your prayers. I should have known this was going to be a lousy day. Last night, just as we were crawling into bed, we got a call from the alarm company to say that my mom's house had been broken into. So early this morning I picked my mom up from the airport so we could go survey the damages and repair the broken windows. It wasn't too bad (we were expecting worse), they must have been scared away by the alarm. It's really just the invasion of her privacy and fear that the sale of her house might fall through that's concerning her...and the fact that it's just plain scary. What a day. Continue to keep Gavin's family in your prayers...he finally received his wings tonight.

Saturday, November 7, 2009

Not eating

It's been another stressful day. Reagan is not wanting to eat...at all. She's clamping down her teeth and not allowing the bottle in her mouth. And if you should be so lucky to get it in she's doing the crazy tongue...flipping and flopping her tongue around like she has no clue how drink a bottle. This whole thing results in her gagging herself and so far she's thrown up twice today. Both times when I was trying to get her to drink. It's been beyond stressful. I finally get a few ounces down her and then she throws it all up. It's not a matter of being sick (although I did switch her over to pedialyte tonight just in case). I think she's just gagging herself with her tongue because she doesn't want the bottle in her mouth. I don't know what to do with her. I feel like I'm going to have a nervous breakdown! Thankfully both times I had to give her medicine today she managed to keep it down. I just pray that tomorrow she turns a corner and "remembers" how to drink. I don't know if I can take another day of this. Today her overall mood was improved (except for the eating part), although she did have a crying episode when I left her with Mike so I could go to the grocery store. She's been extremely high tone today. Very hard to manipulate her when she's stiff as a board! On a good note, the sore on her tongue seems to be healed up and gone. So no real excuse as to why she is refusing to eat. I'm not sure what's going on her...but we really need a break. Please keep her in your prayers.

Friday, November 6, 2009

In pain

Today has been excruciating. Reagan has screamed and cried literally nonstop since about 10am. We had several appts today that we were supposed to go to...Feldenkrais (which we haven't done all week) and then casting (which we were supposed to do yesterday). We had to cancel both. There was just no way Reagan was going to make it through either. I don't know what is wrong with her. I'm tempted to say it's soreness from the surgery but there's no redness whatsoever that might indicate infection and she doesn't seem to be sensitive at all in that area. That sore on her tongue does look painful, so that might be part of it but I'm more inclined to say it's tummy pains. She had a dirty diaper last night and then another today (way more frequent than usual) and this nonstop screaming sort of crying is reminiscent of severe tummy pains. Poor, poor thing. She is completely and totally miserable. She's been in and out of sleep all day, but when she's awake (and sometimes even while sleeping), she's crying. It's hard to see her in this much pain and be at a total loss as how to help her. Around 1pm I finally caved and gave her some hydrocodone thinking it would knock her out cold and allow her some quality rest so that she could recuperate. Not. She's just as restless and fussy as she was before. Finally...finally around 6:30pm...I saw a glimmer of hope. She opened her eyes and for the first time in 8+ hours, she didn't cry. What a relief. What a day. It's been tough on many levels. Today, I'm afraid, little Gavin will lose his battle against mitochondrial disease. I've been following this little boy for quite sometime now and he was such a little love...my heart is breaking for his family. I can't put into words how blessed I've been to know and follow this family. Please keep them in your prayers.

Thursday, November 5, 2009

Still recovering

Trying to get Reagan to sleep last night was so difficult. She kept waking back up screaming. It was beyond frustrating. We tried her in every position...on her back, on her tummy, on us, in her bed, in our bed...nothing was working! Finally at midnight I jumped in the car and headed over to the 24hr pharmacy to pick up her prescribed pain medication. I was trying to get by without using it (since she's already on so many meds), but we were desperate. Thankfully, by the time I got back home she had settled down and fallen asleep. She slept through til 6am. It's just strange. She seems fine while she's awake but as soon as she goes to sleep she starts these horrible crying spells like she's in extreme pain (I'm thinking it's tummy pains). She took one nap this morning without a problem, her second nap today was riddled with similar crying episodes, and the third nap was long and peaceful but then she woke up and screamed non-stop with tummy pains til she fell back to sleep. I put a call into her neurologist to ask about the pain med, just to check to see if it's OK to give to her, in case we need it tonight. He said it should be fine (gee thanks). She's been a little groggy today. I'm sure it's a combination of the sleep issues and the anesthesia from yesterday. It does worry me a little that the last two times she's been put under she had a hard time waking back up. Definitely makes me nervous for the next time. Yesterday I noticed a red blood spot on the right tip of Reagan's tongue (I guess she bit her tongue while under anesthesia?), but today I noticed on the left tip she has two big white ulcers. Poor thing. That has to hurt! We decided to forgo the casts today. I just wanted her to have one more night to recover before adding that extra weight to her little legs. We'll go in tomorrow afternoon to get them put back on. Should be fun. Today we went to our long awaited appt with the Developmental Clinic at TX Children's. Not really sure why we were going, it's obvious Reagan has significant developmental delays, we don't really need them to tell us that. But in the end I'm glad we went...I just loved the doctor. He was just the nicest, smiliest person I have ever met! Seriously, he was all teeth. He's a neurologist, but not necessarily specializing in epilepsy. His main concern was Reagan's tone. He thinks it's severely inhibiting her movement. If she could bend her legs and bend at the waist more easily (instead of constantly staying in extension), he thinks she would be far more likely to be rolling/moving by now. He recommended trying oral baclofen...low and slow. A lower dose than they would typically give kids her age/wt (because it can cause an increase in seizures). He was also very concerned with her nutrition. He wants to run some bloodwork to look at her iron levels. He said since she's mainly on an all carb diet, he suspects that she may have a significant iron deficiency. He wants her eating more meat! He was really advocating a g-tube. He's concerned that although Reagan appears nutritionally healthy, she may be so under hydrated and under nourished that it could be making her seizures worse. I don't know. I guess anything's possible. I absolutely hate the idea of her having to get a g tube, and I have a feeling we would only go that route in an emergency situation, but at the same time I know she's not taking in enough fluids and I wonder about how that might be negatively affecting her health. He agrees with doing the muscle biopsy and said that since Reagan's brain looks essentially "normal" on the MRI, it's most likely that her issues stem from a metabolic or mitochondrial disorder. He would also like to rerun her urine and plasma organic acid levels because he said that the only time she had that done was while she was on the ketogenic diet (which could have significantly altered the results). So that's that. A new set of eyes, some new ideas. Maybe we'll see something positive come out of this. That sure would be nice. Seizures have been a little increased today. Please keep it in your prayers that they go back down again and stay there. Also...please continue to keep Gavin and his family in your prayers.


Her battle wound (I'm living in fear of seeing what's underneath).


The only place she seems comfortable sleeping right now.

Wednesday, November 4, 2009

Long day, long night?

It has been a long day but in the end all turned out well. I woke Reagan up at 6:15am to give her her seizure medicine (in jello). I'm sure it tasted like crushed aspirins but she ate it without too much of a fight. She refused her last chance juice, so we headed in to TX Children's on a totally empty stomach. Thank goodness we gave her her medicine (instead of waiting until afterward) because they were running way behind. They didn't even start the surgery until 11am (1.5hrs after her scheduled time)! Thankfully Reagan was SO good...not a peep during the wait. The longer we sat in the waiting room, the more nervous I got. Everything went well though, the surgeon said it was a textbook procedure, no problems whatsoever. Although afterward she did not want to come out of anesthesia. Usually they make you wait in recovery until they wake up and can eat something but 2.5hrs later they gave up on her waking up. We took her home and eventually she came to. She's actually been pretty good but now that it's bedtime the crying has started up. Every time we lay her down, she starts crying only moments later. I don't know if her leg is hurting her because the pain mediciation is finally wearing off or if it's something else altogether. Poor girl. Please keep her in your prayers. She's had a rough day.

Tuesday, November 3, 2009

Cast free

Reagan gave us a bit of a hard time last night. The stomach pains started up and it was brutal trying to get her to sleep. Daddy came to the rescue and somehow managed to get her down for the night. She slept through the night waking up around 6:45am this morning, a little early, but at least she was happy. I called the pediatric surgery dept to confirm the scheduled time for her muscle biopsy and the nice lady on the other end of the phone informed me that I wasn't supposed to call until 11am. Then she also proceeded to tell me that they weren't even planning on doing the surgery tomorrow because they were trying to coordinate with the dental department. Well, that really irritated me. I had called and left a message weeks ago about the possibility of coordinating the two surgeries but no one ever called me back so I just assumed it was a no go. I can't believe that she wasn't even going to call me about this! Anyway, I told her I just wanted to do the muscle biopsy now and get it over with (especially since it takes another month or longer for the mitochondrial test results to come back). I was a little concerned about doing two surgeries at once anyway. So it looks like everything is set for tomorrow (Wed). She's going to be the second surgery of the day. We have to be there at 7:30am and the surgery is scheduled to start at 9:30am. It's a little later than I had hoped, but they won't move her up so I guess we just have to deal with it. Usually we wait until after surgery to give her her medication but apparently they had an issue this week with a kid having a big seizure so they really want her to have her medication beforehand. Problem is she takes it with food...anesthesiology won't allow that. So we're going to try to give it to her with jello. This will be a one shot deal, so I sure hope she doesn't fight me on it. We've only tried jello a few times and she wasn't a fan. As long as she can get it down and keep it down, I'll be happy. I definitely have mixed feelings about this surgery. I hate that we have to put her through yet another thing, but I also feel like this is something that we really need to thoroughly investigate. Please keep her in your prayers! We took Reagan's casts off this morning after 5 days on. What a mess. It sure wasn't as easy as her therapist made it seem. We soaked her legs in warm water for quite sometime, while I massaged the casts hoping to loosen the plaster even in the slightest. We were sent home with some safety scissors that were extremely dull but extremely necessary (we had to cut off every single part of the cast to get it off). The whole process took almost an hour and left blisters on several of my fingers. Seriously. Isn't there an easier way? Reagan's feet looked great. Not a red mark on them (although they were a little pruney from soaking in the water for so long). They aren't as flat as I was hoping, but maybe after a few more weeks they'll get there. I am glad to have them off during her surgery. She'll have a nice two day break, then we go back in on Thursday morning to get them put back on. But for now she's sleeping pretty soundly...cast free!


Before...



After...

Monday, November 2, 2009

NEAM

Reagan had a great night's sleep last night and she's been in a pretty good mood most of the day. She did take an early nap today, only a couple hours after waking, which worried me a little. Not like her. She's still a little floppy (especially her head control...or lack thereof) and noticeably quiet. We finally heard back from her neurologist about the blood work. Everything looks fine. They did a CBC, liver panel, electrolytes, etc and everything looked OK. So that's a relief. Tomorrow we take the casts off for aquatic therapy and I'm hoping we'll find her feet in good condition. I'm always worried about possible pressure sores...you just never know with casts. Hopefully all is well. So since November is National Epilepsy Awareness Month...I thought I'd take a few moments to talk about how Epilepsy has affected our life. Well, it's pretty obvious after reading only a few posts, epilepsy affects every minute of every day for us. Since Reagan was diagnosed with Infantile Spasms at only 5 months old, our lives have completely changed. We essentially knew nothing about seizures or epilepsy and had NO clue the damage it could do to a newly developing brain. It's been challenging and frustrating and there's no doubt we HATE seizures but strangely enough there are ways in which Reagan's diagnosis has affected us in a positive way. I quit my job as a scientist to stay home with Reagan, which is something that would have not happened otherwise, and I am so thankful for this time I have had at home with her. Although we're not celebrating the typical milestones, I've learned to celebrate every smile and learned to look past my circumstances and be thankful for the blessings that we do have! We don't take anything for granted. Not only do I love Reagan more than I could have ever imagined loving anything or anyone...I have grown to love other kiddos out there, kids I have never even met before, kids waging war against seizures, cancer, mitochondrial disorder...just to name a few. It's amazing what these kids go through and what their parents deal with on a daily basis. Some of the most strong and faith-filled people I have ever met. So inspirational...yet so heart breaking. It's another world, it really is. A world I was never exposed to until Reagan. I think it's easy for some to pretend that this world doesn't exist...that it has nothing to do with them and therefore turn their back on it. But it does exist and people are living it every day. Show them some love. Tell them what a great job they are doing and please keep them in your prayers...they will certainly appreciate it.

Sunday, November 1, 2009

Fall backwards

One step forward, two steps backwards. Reagan was up a lot again last night. She didn't want to go to bed, it took us forever to get her to fall asleep, and then she woke up only a few hours later wide awake and ready to go. I was up with her for more than two hours and finally she allowed me to lay her in her bed awake and eventually drifted off to sleep. So much for getting an extra hour of sleep with the time change. Reagan controls when and how long we sleep, not the time change. I got up early to take my mom to the airport and I picked up breakfast on my way back. Today is Mike's birthday. I feel bad because we didn't do anything except lay around the house all day (he played golf yesterday). Just another sign of how our lives have changed since Reagan. It's just so hard to get out and do anything...even on special occasions. Easier to just hibernate. Unfortunately I probably take it a little too far. Both my mom and Mike commented this weekend on how pale Reagan is. I know, I never take her outside. The thing is, every time I do she gets eaten alive by mosquitoes (and I've never seen someone so sensitive to mosquito bites, they last for weeks and then leave a big bruise on her). I hope she's not getting sick. This afternoon I fed her some baby oatmeal and then I was trying to give her a drink of her bottle...the next thing I know she's throwing up all over the place! I don't know if maybe it was reflux related, if maybe the oatmeal just wasn't sitting well with her, or if (God forbid) she's getting sick. I sure hope not. We've got another jam packed full week. Wednesday is her scheduled surgery for the muscle biopsy to check for mitochondrial disease. If she's sick, that will be a no go. Thursday we've got an appointment with the Developmental Clinic at Texas Children's...this has been a year and a half in the making! Can you imagine not being able to get an appointment with anybody for more than a year and a half?!?!?! It's crazy! Please keep her in your prayers...and while you're at it, say an extra prayer for Gavin and his family.