Slumber Party

I was feeling so sad last night about Marissa and how all of this is affecting her. When I was chatting with Carol on Facebook she suggested that I ask the charge nurse if Marissa could have a sleepover.

So this morning I tracked down the charge nurse and she said if it was just for one night it would be okay. I called Marissa and asked her if she'd like to have a sleepover at the hospital with Mommy and Taylor. She thought it was a good idea, so her bag was packed and she arrived here just after 3 o'clock!

Daddy, what have you done to my hair?!!

I had big plans...I thought we'd go downstairs and have supper together, go outside on the playground for a bit, and come back to the room to watch a movie and eat popcorn. She's got a cold and combine that with a 4 year old and you get lots of whining! Kim was here visiting me, and Jeff came along with Francis and Marissa. When they all left, Marissa and I went down to the playground for a bit, then she was hungry so we went to find some supper. Slim pickings here on the weekend. She seemed happy to have some hard boiled eggs along with a fruit, cheese and cracker plate. So we sat down and she ate two bites of egg, a grape, a cantalope cube, and a bit of watermelon. That was it and she was whining to go back up to the room because she was tired. So I packed up the food to bring back up. She got into a pair of hospital PJ's and crawled into bed. Her typical bedtime is 7:30pm. This was like 5:30pm! She asked for the movie so I put it on and popped the popcorn and she was asleep about 5 minutes later. Craziness!!!

While she was sleeping I fed Taylor her supper. I kept her in her wheelchair for a bit so that her food would settle, then when I noticed she was pooping I quickly scooped her out and into the crib. Too late, it was up the back of her shirt. I put the rail up and swung around to grab the wipes and a diaper when I noticed tubing on the wheelchair. OH CRAP. I looked over at Taylor and...NO TUBE. It had been caught in the chair and came out when I took  her out. Perfect, I have to insert another tube. I guess it's only fair, it was my fault for not checking before I pulled her out of the chair. Before going through that crappy task I decided to give her a quick bath since she was free of  the tube. Then our night nurse came in to hold Taylor while I put the tube back in...took 3 times tonight before I got it in right, first two ended up in her mouth again. Sorry sweetie.

A request had been put in for us to get a pump to take home for her feeds. Normally at home you do gravity feeds, but because Taylor's formula is so fatty it moves through the tube super slow and a gravity feed would take FOREVER. Tonight the nurse came in and said they had gotten a message that we were to use a syringe to do the feeds. That's not too bad because we'd be kind of tied to the house with a pole and pump and 5 feeds a day. This way we can be out and just bring a syringe and her bottle. But it's tricky wondering how quickly to inject the formula into the tube. It would be so easy to squirt it all in over a few minutes, but that would be way faster than her drinking time, so her stomach may not be able to handle that. So it's a slow process injecting 5mL at at time and trying to pace it. But it's only short term, so we'll just deal with it.

I woke Marissa up around 9pm to put her on the toilet and then she didn't go back to bed, she was hungry and thirsty and wanted to watch Treehouse in her bed. Then she asked to cuddle in my bed, so we climbed in together and cuddled for a quite a while and watched Treehouse. So happy she's here. Now she's going between her bed, walking over to the crib to kiss Taylor, and coming over giving me the biggest hugs ever. This is turning out to be a great night together. Just us girls. I love my girls.

EEG News

As I said last night, I needed some time to digest the outcome of yesterday's EEG.

So, here we go...

There was no improvement whatsoever in Taylor's EEG yesterday. It shows a diffuse slow spike and wave pattern during wake and sleep. This goes along with the severity of the epilepsy. The diagnosis of Lennox-Gastaut Syndrome has officially been made. It's not a pretty picture, I attached a link to the name and you can click on it to read more.

Taylor has the three classic features of Lennox Gastaut:

1. frequent generalized seizures of different types
2. diffuse slow spikes and waves on the EEG
3. cognitive dysfunction

As my friend Carol (whose daughter has the same diagnosis) told me last night, it's just a name, they're still the same girls they were a month ago.

When I watched the EEG screen yesterday, I thought it looked the same as it had on Monday. So when Dr. Bello came in yesterday afternoon, I can't say I was really surprised that there had been no improvement.

The technician actually let me take pictures of the screen, so for those of you who are curious this is what it looked like...

And this is what a 'normal' EEG looks like...

Dr. Bello thinks there are two reasons why the seizure activity has suddenly increased:

1. The Vigabatrin could be making it worse. This is the medication Taylor's been on since she started having the Infantile Spasms at 5 months old. He is weaning her off it quickly over the next week. As of last night the dose has been cut in half.
2. The natural history of the condition: developmental delays, onset of Infantile spasms, multiple seizure types, settle into Lennox-Gastaut.

Taylor's having significantly more of her myoclonic seizures which present as a startle seen usually as a jerk of her head and her eyes roll up. Now there's a lot of eye flutters with the rolling, which are also seizures. And most recently the atypical absense seizures, spells of staring and zoning out.

She's not yet having the typical tonic seizures of Lennox-Gastaut, which involve stiffening of just a few muscles or the whole body.

If weaning off the Vigabatrin does not bring her back to her baseline seizure activity, it is going to get a lot more difficult to control. So we are hoping for the best here.

Supergirl

Marissa wouldn't go to dayhome this morning, told Daddy she was too sick to go and she wanted to cuddle. So with me being in hospital with Taylor, he had to stay home from work and take care of the sickie. Apart from a cough I'm not too sure she's all that sick, I think that Mommy and Taylor being gone for so long is really starting to take its toll on our monkey.

Later in the afternoon they came to the hospital to visit. I found out there were Halloween festivities happening down on the main floor so Marissa had come dressed up in one of her princess costumes. I had Mom swing by the house on her way here to get Taylor's costume too. I stumbled upon a pink diaper shirt a little while ago at Old Navy with the Supergirl logo on the front...and since that's what I call her, I clearly had to get it. So rather than a regular costume, Taylor is going to be the 'Supergirl' that she already is wearing the supergirl diaper shirt, some pretty pink tights with hearts all over them, finished with a pink tutu!

Marissa ran across the cafeteria when she saw me and jumped into my arms, it was the best greeting EVER. Missing my little monkey. She had fun running around to the different stations trick-or-treating, but I think between being tired, having a cold, and the sugar rush...she started to rapidly expire when we came back up to Taylor's room. That's to put it nicely. So her and Daddy left...she crashed on the car ride home.

Eddie (aka Mad Hatter), our favourite porter

Granny

Grandpa

Sparkles the clown dressed a little differently for Halloween

When I talked to Francis tonight he was pretty choked up. Marissa had been acting differently all night. Very cuddly and kept looking at him with a forced smile. When he put her to bed she did the same thing and he asked her what was wrong. She broke down crying and said how much she's missing Taylor. Oh my heart nearly broke. This is alot harder on her that I really realized.

It's looking like we're here until Monday for sure. We have one more teaching session before we can go home with the feeding tube, and Francis has to do an insertion. Monday at 11am is the time scheduled for that. So hopefully we can then be finally discharged and have our family back under the same roof.

I did my second tube insertion late this morning when the Home Nutritionist came. It was a little less scary today, although the first one coiled up in her mouth. Quickly got it out and the second time I got it right. Phew. Having some issues with the end caps coming undone and leaking out stomach contents everywhere...GROSS. So we tried a different tube today that apparently the cap stays put better, but it's a one week tube rather than a one month tube. It was a little easier going in than the monthly tube. Not thrilled at having to put in a new one every week, but it's not going to be for too long, so we'll get through it if it ends up working better.

From the teaching session we were taken to Neurophysiology Clinic for a follow up EEG to see if the Phenobarbitol has brought the seizure activity down. I'll blog about that tomorrow. It's late, I'm tired and need to digest the results first.

Signing off for tonight...night night!

"The Plan"

Taylor had a pretty good day. She didn't have to go through another tube change, so that definitely worked in her favour. But that meant that Francis didn't get his turn. He was here at 11am for our second teaching session, but the Home Nutritionist didn't show. That was a bit disappointing. We found out later in the day that she was sick at home.

The OT came this afternoon to discuss "The Plan". So there are three concerns from the Swallow Study report:

1. She had a micro aspiration from her liquids
2. She is pooling the solids at the back of her throat
3. There is bridging of the airway

Both 2 and 3 put her at risk of aspiration. Bridging of the airway means that the pooling food is hovering over the flap right over the airway. The recommendation of the report is just that her liquids be thickened! This is great news! On Tuesday night when they came to talk to me, the impression they gave me was awful and I had her needing a tube for liquids for the rest of her life. Not so!!! There is a carb free thickener called SimplyThick that can be used on the ketogenic diet. We are going to thicken her fluids with it to a nectar consistency. Taylor has no history of aspiration pneumonias, so we are prepared to accept the risk and take all the appropriate steps to minimize this risk:

• She will continue to be observed by the Occupational Therapist and Speech Language Pathologist here at the hospital at our regular Infant Team appointments. They can watch for any feeding concerns.
• We are going to more closely monitor her overall health, how many colds she gets, if we start to notice increased work of breathing, lots of coughing, and signs of pneumonia.
• We are going to thicken her fluids
• We are going to make sure her feeds are as safe as possible: properly positioned in appropriately supported seating, making sure that she is very alert when feeding and not having lots of seizures

If we aren't prepared to accept the risk, the alternative is to tube feed her. They usually only use an NG tube for a few months, and then surgically put in a G tube in her stomach. We're just not prepared to do that at this point, and it isn't the recommendation either.

This SimplyThick can cause a lot of gas and discomfort, so we have to start this in very small amounts. We're going to give her two ounces of thickened fluids three times of day through until Monday, with the rest of her fluid going through the tube. This will gradually increase until all her fluids are thickened. So we will be using the feeding tube short term until she is up to her full fluid intake being thickened.

I like this plan :-)

I can live with this plan :-)

I gave her the first two ounces of thickened formula at suppertime and she handled it very well, without dribbling anything down her chin. This was nice to see, because when she drinks her bottle, quite a lot spills out of her mouth, almost like it's too hard for her to manage.

That's about it for today.

Teaching

Well it's been quite a day!

Unfortunately Taylor had another rough night, up crying from just after midnight to 2am, and then again quite early in the morning. The nurse vented her tube and quite a bit of air came out so I think her tummy was just full of gas and she was uncomfortable. I'll have to remember that trick next time it happens. She finally pooped on her own, so hopefully the continuing constipation issue is beginning to resolve itself.

Taylor's ketogenic dietician came by this morning, so I shared with her all the aspiration stuff from yesterday. I did feel better this morning after my emotional night. She helped me out with some questions to ask:

1. Could Taylor's swallowing have been affected by the tube, therefore affecting the result of the study, and thus the aspiration?
2. How clinically significant is this aspiration when she has no history of aspiration pneumonias?
3. Could her newly increased seizure activity play a role in her current ability to swallow?

She was very helpful in my feeling much better about the outlook of all of this. There is a carb-free thickener that we could use to thicken up her fluids, so it would not interfere with the ketogenic diet. That is good news. This could possibly be as simple as thickening up her formula, which will have to be done gradually. Coming home with a tube is still our reality, but maybe it's just going to be for a short term.

Rounds didn't really have much new on the list, phenobarbitol started last night for the seizures, and a follow up EEG to happen Friday. Taylor's ketones were way too low this morning (1.5 when they should be over 3, ideally in the 4's). In discussion over rounds they discovered that the phenobarb had been ordered as a liquid, which is a syrupy, liquid full of sugar, and therefore NOT ketogenic diet friendly. Crap. So they corrected the order and tonight it was sent as tablets to be crushed and mixed with water. Only other thing of note from rounds was that what has to happen before we can be discharged, is parent teaching with the NG tube.

I had dodged that bullet for 12 days since the tube first went in, but today it caught up with me. We know now that we are definitely coming home with a tube. For how long we don't know, but indeed we are. So the time to learn how to remove it, put it in, and use it has arrived.

My Dad was here visiting when the nurse from Home Nutrition came down to do the first of three teaching sessions. She told me that the last part of today's teaching was to have me remove Taylor's tube and put a new one in. O.M.G. I asked her if she brought a bottle of wine for me to consume after I did this. Sadly, her answer was no.

So she went through the steps with me:

1. Wash hands
2. Cut Duoderm in a rounded teardrop shape about the length of your thumb and apply to cheek with narrow end just under the nostril
3. Cut Tegaderm in half lengthwise
4. Measure and mark tube - Place the end of the tube on the tip of the nose and measure to the ear lobe and then to the midpoint between the breastbone and the belly button. Make a small mark on the tube with a red Sharpie marker. Do it again to make sure your mark is in the same place, if so then make a solid mark around the tube with the Sharpie.
5. Bundle baby - Using a blanket, tightly swaddle with arms tucked in to her sides
6. Remove old tube - Peel the tape and duoderm off all together starting at the outside edge farthest from the nose, once it is all off and the tube is free, pull the entire length straight out with one quick motion.
7. Lubricate tube - Close the cap on the NG tube, and cover the tip with water-soluble lubricant.
8. Insert tube and tape - With child lying on her back and head straight, gently insert the tip of the tube up and angled in, then lift arm and start pushing the tubing in quickly (while holding your breath because at this point you will be FREAKING OUT). If the tube curls in the mouth, don't be alarmed (yeah, whatever!), just pull the tube out and start again. If you are not able to forward the tube, do not force. Pull back slightly and try to insert the tube again. When the red marker line reaches the nostril, the tip of the tube should be in the stomach (and you can breathe again). Have partner hold in place at nostril and across cheek while you tape it in place over the duoderm.
9. Check placement - Withdraw fluid from the stomach by attaching a 30mL syringe to the end of the tube. Using a 30mL syringe is important because if you use a smaller one it could collapse the tube. If you withdraw stomach contents, it means the tube is in the stomach, and placement is good. Gently inject the stomach contents back into the tube as they contain important body fluids and enzymes that your child needs. Flush with 5mL water to clear the tube. If you are not able to withdraw any stomach contents, try again lying on left or right side or sitting up. If still unable, inject 5mL of air quickly into the tube and try again. If you are still unable to withdraw fluid from the stomach, remove NG tube, reinsert and check placement.
10. Cuddle baby (**to apologize for the trauma that you have just put her though!!!!**)
11. Coil tube and tape to clothes behind the shoulder (this is to avoid chance of strangulation)
12. Enjoy a LARGE alcoholic beverage (okay I put this one in myself 'cause I'm sure it would help)

Happy to report......I....DID....IT!!!! And I have a witness, Dad was here to back me, thanks for sticking around for the excitement! Francis...study up on these steps, tomorrow it's your turn!

12 days ago I thought, "there's no way in hell I'm going to put one of those into her". But today I did it. I was shaking like a leaf when it was over and cried, but I did it. Yay for me. Oh the things I never in a million years thought I would learn and do, little Taylor is teaching me along the way. You've brought out strength in me little girl that I didn't realize I had. I love you so very much.

After that was over Taylor's Physiotherapist Jeanette, and her Occupational Therapist Andrea came to our room and took us down to the sensory room for half an hour. Taylor was surrounded by all sorts of different lights, a very nice distraction after subjecting her to such trauma with the tube change, and a nice change of scene from the hospital room. Thanks you two for the little break!

The inpatient OT didn't make it up to see me until 4pm, so we have set a meeting up for 2:30pm tomorrow. I'm a little disappointed that a feeding plan hasn't been organized yet, but it was still a productive day with the teaching and all.

Mom arrived tonight with her arms full. She found some toddler size winter sleepers at Costco, very exciting! Cinnamon buns for breakfast, mmmmm. More laundry all clean and folded. Turkey soup for tomorrow. Banana bread, trail mix, tea bags, sugar and a teacup. A bag of my favorite oatmeal cookies from the bakery at Sobeys. Cutlery, cause I can never find forks around here. Beef stew for her and I to have for supper and a stainless steel water bottle filled up with......RED WINE!!!! I'm sure we violated some sort of hospital policy with that one. At any rate, we enjoyed a delicious supper here in the room complete with a paper cup of red wine. Lovely!

All I Can Do...

...Is Love You To Pieces. The song keeps going through my head thinking about my sweet Taylor. Francis and I had tickets to a Calgary Philharmonic Orchestra concert tonight with Chantal Kreviazuk. It was a crap day today for bad news and I really didn't feel like going but Mom had come to the hospital and she made us go. I guess it was a good distraction. Chantal has such a beautiful voice, and that particular song tonight had me a little choked up.

So...I blogged this morning about yesterday's EEG, and the disappointing results I got this morning when I saw Dr. Bello. Unfortunately that wasn't the only bad news...

Taylor had her Video Fluoroscopy (Swallow Study) this afternoon. Initial results that we were told right away were that there was some question on how Taylor managed the bottle at the beginning and they were going to take another look at it. As for the pureed meal, she is definitely 'pooling' some of it at the back of her throat. Basically she's swallowing, and most of it goes down the right way, but some of it is lingering behind. This puts her at risk of aspiration. I was feeling pretty down about this because I so wanted the result to show that she was swallowing everything nicely and that there was no risk of aspiration happening.

Getting ready for the Video Fluoroscopy

All strapped in and ready to eat

The machine came right up beside Taylor to x-ray her throat from the side

Here's Taylor! Live on x-ray.

The gals from the test came back to see me around 5pm tonight. They had reviewed the study with the Radiologist and Taylor had in fact silently aspirated a small amount of liquid from the bottle feed. My heart just sunk. They have strongly advised that we stop giving Taylor thin liquids orally. I asked if this could improve and what they told me was that it is unlikely. That it is pretty rare for them to see improvement because the swallowing muscles are ones that you cannot strengthen. I felt like they had just sucked any hope out of me, and that Taylor will need to be tube fed liquids forever. The SLP (Speech and Language Pathologist) said that the congestion she heard build in Taylor's throat from the time the study finished to us putting her back in her wheelchair, told her that Taylor was aspirating again. How can I absorb all of this?

So they leave the room and I'm left here alone with everything running through my head. Taylor is coming home with a tube. I have to learn how to use it and put it in. She'll never drink again. Tears came, lots of them. I called Francis but he was in the car with Marissa and her friend so he said he'd call me when he got home. I went to the kitchen to melt the butter to mix into her supper...they told me I can still feed her the purees orally. As I was coming back to the room I passed the Pediatrician in the hall. She saw my red eyes and came to talk to me.

She does not want me to think this is forever. She said that it could be that with everything else happening with Taylor right now, increased seizures and all, that it's possible for her feeding to be affected by it, and maybe once she's back to her baseline, her feeding abilities may also improve. They are going to talk tomorrow with the team from the study, as well as our ketogenic dietician, and come up with an interim plan for how we are going to feed Taylor. There may be a possibility of thickening her formula so that she could take it orally. But then there's still her water requirement, and she definitely can't take that orally. So tomorrow's big priority is the new feeding plan.

What's next I really don't know, but I'm feeling pretty disheartened, discouraged, and sad tonight. I feel like it's another loss for Taylor and I just keep asking whoever out there that may be listening..."why her"? I SO hope that the pediatrician is right and that once Taylor is back to her normal self, this new challenge will resolve itself. But at the same time, the swallow study team didn't give me that kind of hope. I don't want to let them take that hope away from me, but tonight it's hard. Tomorrow is a new day, with that (and some sleep) I will try to face this next challenge with a more positive outlook.

On a happy note, before they came with the bad news, Taylor enjoyed another visit from Sarah the Music Therapist. Definitely the highlight of a difficult day. Thank you Sarah for bringing some smiles our way.

Taylor's exploring the drum

She enjoyed the chimes again

Nice touching Taylor

Spike and Wave

Taylor had a good day yesterday. She ate both meals and drank 1.5 bottles, with the remaining ones going through the tube. Main activity was her EEG. It was at lunchtime so Francis was here and came down to the EEG lab with us and waited until all the electrodes were attached. Then he had to head back to work with it being monthend. Taylor was lying nice and still for the test so instead of being up on the bed with her I put the bedrail up and sat down by the technician so that I could watch the screen. I've never done that before. Without knowing what a normal EEG looks like, I watched the screen and thought to myself..."her poor brain is crazy".

I asked the technician what the seizure activity looked like so she pointed it out to me, which was nice because I don't think they're really supposed to tell me anything. As I continued to watch I was shocked at how much seizure activity I was seeing on the screen while Taylor was sleeping. Every minute, sometimes a handful every minute.

It wasn't until this morning that I saw Dr. Bello who shared the results. There is markedly increased seizure activity from the last EEG which was just 11 days ago. Continuous spike and wave activity. Not what I wanted to hear. He told me not to get discouraged, this happens, and it's not necessarily a regression. But we need to get her back to where she was 11 days ago. So his recommendation is to proceed with starting Taylor on Phenobarbitol. Valproic Acid is apparently another very good option, but I do not like the side effects of that one at all, fatal liver failure...no thank you. So we're going with Phenobarbitol, that will start tonight.

So, now we're here for the rest of the week for sure, he wants to see how Taylor responds to the new drug, and they'll want to do another EEG at the end of the week.

Next up is the swallow study at lunchtime, hope that has better news for us.

I know he said not to be discouraged, but I can't help but be.

Family Day

Taylor had a really good night last night, slept well and no tears. We had a nice family day today, just the four of us. Francis and Marissa came down just after lunch. Hung out in Taylor's room together for a while, then I took Marissa out for some Mommy and Marissa time, and Daddy stayed at the hospital for Daddy and Taylor time. When Marissa and I got back, Francis and Taylor were lying down together cuddling on my bed, very sweet. Then Marissa entertained us by playing school. Francis was the teacher, she was pretending to be outside for recess, and told him to ring the bell for snack time. Then it was circle time and she told him how to sing the bunny song. Then she made him do story time and she sat on the floor listening intently. Quite amusing she was!

Taylor got a bit worked up earlier tonight, and hasn't pooped since Thursday morning after her enema. I asked for another one because I don't want her having another bad night if that's what was bothering her. So hopefully now that she's emptied out she'll settle and sleep well. She ate her two meals and bottles well again today and had the additional 3 tube feeds.

Not much to report on, we've got an EEG tomorrow, and the Swallow Study on Tuesday. Hopefully both will go well and they can take the feeding tube out and let us go home. Fingers crossed! It's been 10 days now and we're getting B.O.R.E.D. here!

Special Sweets

Busy visiting day today...Daddy and Marissa...Grandma and Grandpa...Kim, Martin and Sophie...Granny and Grandad. What can I say, Taylor's a popular gal. But really Taylor, it doesn't take a hospital admission to see everyone!

Marissa arrived in her scrubs ready to tag along with Taylor's team as the youngest resident ever! She's missing her little sister so much.

Grandma and Grandpa arrived with a very special plate of goodies today, Grandma made cookies personalized especially for Taylor. They said 'I Love You Taylor' and 'Supergirl'. They are absolutely precious, thank you for taking the time to make something so very special!

Marissa was very happy to have Sophie here to play with. Martin took them out to the playground, they had wagon rides around the unit, made pictures together, and took turns pushing Taylor around in her wheelchair. They were a very cute twosome and played really nicely together.

Granny and Grandad came to hang out with Taylor for the evening so that Francis and I could go out and have a date, thanks so much you guys. It was so nice to get out of here, know that Taylor was in good hands, and enjoy the evening with my hubby. We went out for Indian food at Karma down by our place, it was delicious...I'm still full. Then we went over to Indigo and just wondered around, had a Starbucks, then I headed back here and Francis went home.

No new issues with Supergirl today, she ate her two meals and drank her two bottles, the remaining ones went through the tube feed.

A Little Smile Goes A Long Way...

Happy to report that Taylor had a much better night last night. Looks like the enema solved her troubles!

Had our regular morning visit with Mom. She took my dirty laundry home yesterday and brought it back today nice and clean, you are the best! I love this picture of Mom holding Taylor's face in her hands, so sweet.

Daddy came for our regular lunch visit and got some snuggle time in. Also brought a couple backup soothers since she chewed through one last night!

Dad & Marny came for our regular afternoon visit. Thanks Marny for the sweater shaver, a fun new toy to play with at the hospital. The little things that excite me! This picture is so sweet of Taylor's delicate little hand resting on Grandpa's while she slept.

It's funny what you can do with her when she's having a good sleep. You can pick up her arm and let it go to flop right back down. You can check her blood pressure...take her temperature...pretty much anything!

But the most wonderful thing she does is smile. These treasures are so few and far between that when she shares them with us, it's a beautiful thing. While she was in Grandpa's lap this afternoon she kept smiling over and over and over. They were very brief, and too fast to even capture with the camera. Here's a few of the best shots I got.
 

Martin dropped in with Sophie on his way home from work. Sophie stood on the stool and ever so gently stroked Taylor's head, very sweet. I think her favourite part was pushing Taylor in the wheelchair down the halls and around the main floor, and she actually did a great job! Thanks for the latte Marty, and for stopping by!

Feeding wise, Taylor did well today. She ate both her meals and drank two full bottles! Unfortunately I'm still hearing the gurgles in her throat when she starts drinking, and some choking/coughing. Hope that's not a bad sign. This swallow study can't come fast enough.

Dr. Bello (our neurologist) dropped in tonight. One thing I asked him about was Taylor's zoning out. She has long spells where she's just kinda spaced out, very still, very calm, just lies there. It's wonderful for cuddling, but really it's not productive at all, there's no working with her when she's like that. Lately she's having full days like this, or at least significant chunks of the day. He said that it could be just increased periods of inattention, as with brain dysfunction. It could be new and different seizures. He's sending her for another EEG on Monday just to see if it tells us anything, I hope she's in her zoned out phase for it so that we get a good representation. I pray that it's nothing. We don't need to add anything new into the mix right now.

That's a wrap for today!