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!

Drainage Issue

Taylor had a really rough go last night. She started crying hard around 11pm and didn't settle until nearly 1am. It was very similar to the way she cried a couple nights ago before she had the old man farts and relieved herself. Only last night she never got the relief, she just cried and cried and cried until eventually I think she cried herself out. I actually got right into the crib with her trying to rub her tummy, hold her, bring her knees up. Tried everything I could think of to comfort her without any success. She was up again upset around 2:30am but settled quicker that time. Again a few hours later, and again at 8am. She calmed quicker those times, and at 8am when I put the soother back in she fell back asleep and had a very peaceful sleep until 11am.

The OT was supposed to come at 8:30am to watch Taylor eat breakfast, but because she had such a bad night we decided to put formula through her tube, let her sleep, and the OT would come back before lunch. When the docs came for rounds I told them about her night and that it seemed to be bad gas pain, but she never got any out. When the doctor felt her tummy he said he could feel that she was pretty constipated. Wonderful. So they ordered an enema to clear her out. Mom arrived just as rounds were wrapping up.

Before they start a tube feed they draw out stomach content and test the pH for tube placement. The pH this morning was quite 'basic' when it should be 'acidic'. We got sent downstairs for a quick abdominal x-ray to check tube placement as well as to see how backed up Taylor was in her bowels.

When we got back from x-ray, Jadi was here leaving me a note. Jadi is one of the 'special' moms I met last month. Her little one Clare had a Neuro appointment today so they came by to say hi as she knew we were in the hospital. Thank you so much for the food, I really appreciate you thinking of us and taking the time to bring me food when you already have your hands full. Jadi has had far too much experience with Clare aspirating and dealing with NG tubes. I just hope that Taylor's test on Tuesday is good and that we don't need to go home with a tube. Otherwise I will most certainly be calling on Jadi for support and an understanding ear.

Next up was Taylor's enema, Francis arrived just in time to be here for it, what timing! She handled it very nicely, no tears, no wiggling. A few minutes later things started to move, and move they did...full speed ahead! No need to be too descriptive here, let's just say Taylor's drainage issue has been fixed!

The next pH check was back to normal, so the enema fixed more than one thing! When the x-ray was looked at, it was confirmed that the tube placement was still good, and that taylor's blockage was quite low down, so the docs feel that the one enema was enough. Hopefully that's what was causing her so much pain last night, and tonight will be better for her.

Because of the x-ray, our OT session got moved a little later. She came in just before 1:30pm and observed the same gurgly noises in Taylor's breathing once she started feeding. So she still believes that the swallow study on Tuesday is the best plan of action. Taylor only ate a third of her lunch and she wasn't interested in the bottle, but she had just finished a tube feed, so she was probably just full.

This afternoon Francis' sister and parents came to visit. They were all so happy that Taylor was having a 'cuddly' day cause it's not too often that they get to hold her for that long without her fussing. So they enjoyed the snuggles. And Taylor must have enjoyed them too because she fell fast asleep in Auntie Myriame's arms. Thank you Myriame for the cute Halloween bear and the beautiful dress you brought for Taylor. Paul & Grada, we are so very grateful for you coming out this week to take care of Marissa while I'm in the hospital. I know she really put you through the ringer yesterday, I'm sure having today off duty was better for you.

When supper came tonight I mixed Taylor's food together and she ate every bit of the meal. Next I tried the bottle. I fully anticipated that she wouldn't be too interested and that it would need to go through the tube. But Supergirl proved me wrong. SHE DRANK THE ENTIRE BOTTLE!!! And it was a big bottle too...230mL to be precise. Way to go Miss Taylor, so proud of you! She had some gurgles and coughs which made me nervous every time I heard them, but what a big step drinking that much by bottle. Up until now the most she drank out of a bottle was 65mL. That swallow study can't come soon enough. I just want to find out right now where things stand with regards to whether or not she is aspirating. Please oh please let her be okay.

Lana (Taylor's aide) came tonight to see us, she arrived right at Taylor's suppertime and was so pleased to see Taylor eat as well as she did. She sure misses Taylor and was most happy that she got to have some cuddles with the little princess. Lana almost didn't recognize her because Taylor has lost her tummy since she went on her eating strike. She is just oh so tiny around her waist. She's gone from 11.4 kilos last Thursday morning, to 10.7 kilos today. That's 1.5 pounds which is alot for a little person. Thanks for the visit Lana, was nice to see you.

When Taylor settled tonight I popped over to Starbucks and brought back a chai latte...mmmmm. Just finished up this post as I took the last sip. Time for bed. Nighty night :-)

Minor Setback

Another day is done and I have a Starbucks in hand as I type today's post, so all is good :-)

Taylor took her formula through the tube this morning and ate 60% of her breakfast. Mom arrived a little while later with my latte and banana bread...thanks again! Taylor was pretty zoned out again this morning so Mom had a good long cuddle with her peanut, and I jumped in the shower.

When the team came to do rounds, the plan was pretty straightforward...continue feeding Taylor her solids, hope that she starts doing better with the bottle, and maybe we could take the tube out tomorrow and push her a little harder.

Then OT came...and the plan went kinda sideways! We tried the bottle first. Taylor only took a few swallows and "spilled" a bunch out of the sides of her mouth. She turned away from it after that, so we moved onto the food. She ate willingly, and ate 99% of it. But the OT heard something that she didn't like. Once Taylor started eating, we could hear a faint gurling sound in her throat as she breathed. And she had a few coughs, like you would do when clearing your throat. There is a flap that closes over the airway when you swallow so that the food doesn't go down the airway and into your lungs. When you finish swallowing the flap opens again for breathing. The OT is concerned that even though Taylor is swallowing her food nicely, some of it is lingering there where the flap is.That puts her at good risk of aspirating...breathing in those food particles (or liquids) when the airway is open.

So...her recommendation is to do a video swallow study. Same one she had about 15 months ago, they put barium in her food and formula and she eats and drinks behind an x-ray. It shows the passage of food from the mouth through the throat, and into the esophagus. The study specifically looks for signs of aspiration, which can be seen as barium entering the windpipe.

We could do this as an outpatient, however there would be about a 4 week wait. If Taylor remains an inpatient, she can have the study done on Tuesday. So that's what we're going to do. The sooner we find out for sure, the better.

So, we're residing at Children's until at least then. The OT is also proposing that we only offer her 2 meals instead of her usual 3. And only offer her 2 bottles instead of her usual 5, having the other 3 go in the tube. She feels that we don't want to stop feeding Taylor and risk having her not take anything orally by the time the study happens, and at the same time we don't want to offer her so much orally that we add to the potential problem. So that's the new plan, cut out one meal and only offer her formula by bottle a couple times a day. The formula is going to be beefed up so that it has added calories to make up for the meal that she is missing.

Aside from the feeding, Taylor has really come around. She was pretty spaced out for a while this morning, but started to perk up at around 11am. Kicking and moving around the crib the way she normally would, and making some of her usual vocalizations. Unfortunately, Taylor getting back to her more normal self means that she doesn't really want to be held, she just wants to move around. I think I'll have them bring a mat in tomorrow so that she can roll around on the floor. Our hours of cuddling may be over, which makes me a little sad, but I'm happy that she's getting back on track.

Had another visitor tonight, Aiden's mom Linda, who we know from Pace. That was a nice surprise. They have gone through many of the same issues, tests, hospital stays, etc. What she said is so true, with these guys, we just take it one day at a time cause you never know what's coming. It was nice to see you Linda, thanks for making the drive all the way up here to see us, and for the lovely gift for Taylor, you really shouldn't have.

The OT is coming back in the morning to have another listen as Taylor has breakfast. We'll see what tomorrow has in store for us!

Music Therapy

Oh my goodness, what a GREAT day! I know, I know...how can you have a great day in the hospital? But you sure can when you see your sick little girl start to turn around!

Taylor's formula was hooked up to the tube feed before I woke up so I didn't have a chance to try the bottle. But her breakfast tray was here so I mixed everything together and gave it a whirl. She ate the whole meal....GO SUPERGIRL!!!

Mom arrived a little while later with a latte for me, and just in time to be here for rounds. The docs were very pleased to hear that Taylor was starting to eat. We're going to see if she'll take some formula from the bottle at lunchtime. At this point, with Taylor's willingness to eat, they don't really have any questions for the GI docs. And there continues to be no indication or reason for them to think she's aspirating.

Lunchtime arrived, Taylor had been cuddling nicely in Granny's arms so we just kept her there and gave the bottle a try first. Francis arrived shortly after and got to see Taylor drinking...she drank 65 mLs!!!!! We were sure celebrating that accomplishment. First drink she's taken since 3pm on Thursday. Granny handed her over to Daddy for his turn to cuddle and then her food tray arrived so I mixed it up and she ate two thirds of it!!! What progress my sweet girl is making! Starting to see the light at the end of the tunnel.

First bottle feed in 5 days!

Just as Francis was about to head back to work, the Music Therapist came through our door, so he stayed while she was here. We know Sarah, she does Music Therapy through JB Music at Pace on Friday mornings. We were going to have her come to Taylor's little birthday party, but it didn't work out when Taylor's struggles last week escalated and we landed in the hospital. She knew we were here so when she got to our unit she came looking for us...what a nice surprise! How nice to have our own private time as a family with Sarah. She played her guitar and sang for a bit, then we put Taylor's hand on the strings and let her feel them and make sounds. She had a few other instruments that she used with Taylor and spent some time letting her explore them. After that she played her guitar again and sang a very beautiful, very tender rendition of "You Are My Sunshine", followed by "Let The Sunshine In". It was very touching, Francis got pretty emotional, then I started, and I think Sarah fled the scene before she joined in! She was wonderful with Taylor and she has the most beautiful voice. I feel very grateful that we got to share this with Taylor today. Thank you so very much Sarah, you have a very special gift in what you do.

Taylor's turn on the guitar

Dad and Marny arrived just as Sarah was finishing, and with Crave cupcakes in hand......Mmmmm. Taylor was so very relaxed, calm and quiet all day today. Sort of zoned out really. She was very receptive to being held and cuddled...so we all took up the opportunity to get in our snuggles while we could. Granny had a good long one this morning, then Daddy over lunchtime. She had a bit of a sleep when Dad and Marny arrived, then they each had a long cuddle with the little angel. The OT popped in to see how Taylor was making out and she was very happy to hear that she's been eating and drinking a bit.

She had some leakage through her sleeper so when I changed her diaper I decided to put on one of the outfits they brought her for her birthday. She looked ADORABLE. It was nice to see the little munchkin in something other than a sleeper. I strapped her into the wheelchair and went downstairs to see the fish, say goodbye to Grandma and Grandpa, and get some tea.

Can't get enough of how sweet she looks sleeping

In one of her b-day outfits from Grandma & Grandpa

 

GORGEOUS xoxoxo

Watching the fish

On our walkabout...or wheelabout!

Shortly after I got back to the room it was feeding time. She took about 45 out of the 140mL of formula by bottle, then the rest went through the tube. When her supper came she didn't disappoint, ate 84% of it. Good job sweetheart! Spoon in one hand, camera in the other, I managed to get a shot of her nice open mouth ready to take a bite! Now we just need the drinking to improve.

Nice open mouth Taylor...keep up the good work!

Taylor is sound asleep as I finish this so I just had the nurse put her last feed through the tube instead of waking her up and trying the bottle. We'll get back at it in the morning.

67% to be Exact!

I was showered and ready this morning just as the doctors were coming in for rounds, that was good timing. No big changes though. The plan for today was for OT to come and do a feeding assessment and we'd go from there.

Our dietician came next. She's hesitant to beef up Taylor's formula quite yet as it may make her too full to want to even attempt eating orally. So she's going to send Taylor's 3 meals up and I'll keep offering it to her in the hopes that she'll take it. The formula will stay as is. If she continues refusing for another day, then the kitchen will jack up the formula to have all of Taylor's daily calories in it.

My mom came to visit again and brought me a couple dinners, some snacks and some oatmeal for the morning. Just what I needed! She also brought Supergirl's birthday present from the party that didn't happen. Lovely coat and boots for the winter. Thank you for everything Mom, you take such good care of me.

Between the lovely clothes she got on Saturday and the stylish outerwear today, she is well suited up to GO HOME. If only she'd eat!

Granny & her peanut

The inpatient Occupational Therapist arrived just before noon and we decided to try offering Taylor a bottle as well as some applesauce. Francis arrived from work just in time to be here for it. We managed to get a wee bit of applesauce in, but it was more me pushing it in than her taking it willingly, and she was giving some pretty strong refusal cues. The bottle she was having no part of. So, needless to say, the OT was pretty hard-pressed to give an assessment when Taylor really didn't feed. She said she'd go and review Taylor's file before putting in her feedback and recommendations.

After Taylor was done refusing to eat she promptly passed out and Francis was able to get in some nice cuddle time with his little cutie before heading back to work.

I got some cuddles myself, but after Taylor had woken up.

Through the night, the nurse went to flush Taylor's IV (since it had been locked off), and it was no longer working so she took it out altogether...YAY she's wireless! So that meant she could finally have a much needed bath. Her left hand had been taped to that board and wrapped up since Thursday evening, so it was pretty stinky. Happy to report that Taylor enjoyed her bath and is smelling lovely!

Just as I finished bathing Taylor, my Dad arrived to visit. Taylor always loves when he strokes her face ever so gently. She just lied there in her crib ever so calmly, very sweet. Thanks for the visit, and for the Starbucks!

The pediatrician dropped in later this afternoon. He'd like to give Taylor another day or two to hopefully turn around on her own before getting the Gastrointestinal docs involved, because they'll likely want to do a scope right away, and that would mean putting her under general anaesthetic in an operating room. So I guess we'll go with that, give her another day or so and if she's still not eating, they'll check out her esophagus for signs of inflammation, which would most likely be from bad reflux. They started her on an antacid yesterday, so if reflux is what's causing her grief, she could very well turn around within a day or two.

Taylor's supper tray arrived in the room just before 5pm so I melted the butter and mixed it together with the beef, applesauce, and whipped cream. Sounds wonderful doesn't it?! She was so content lying in her crib that I just kept her there instead of moving and upsetting her. I put a little bit on the spoon and touched it to her lips. She sort of opened her mouth a bit so I slid the food off the spoon into mouth. She used her tongue and swallowed it nicely. I got a bit more on the spoon, she opened her mouth and she took it again! And again! And again! Until she had eaten 67% of her meal, to be precise!!! So proud of you Supergirl!!! Finally after 5 days she took something orally. This is a great breakthrough. Let's hope breakfast tomorrow goes as smoothly. We'll make another bottle attempt in the morning too, so far she's still refusing that.

Following that excitement I actually left the hospital tonight for the first time. Mom and I had signed up for a Photography class a couple months ago, and it started tonight. I had someone come in to sit with Taylor while I was gone so that she wouldn't be alone, and off I went to Mt. Royal. It was a good class, have some practicing to do with the camera on manual mode, which is quite different from Auto, which it has mostly been set on since we got the camera back in February! It was a nice little break, and good to get out of here for a few hours.

As I sat her typing this post, Taylor had a burst of fussiness for about 10 minutes, wiggling around in her crib and crying. She finally took the soother and no sooner did I sit down and she started farting. And I don't mean little toots, but what I would describe as full on old grown man farts. Seriously! I'm still laughing.

Well, I'm off to bed and hoping for more great things from Supergirl tomorrow.

Finding Nemo...

Another eventful day here at the hospital...

More special visitors came to see Supergirl. Granny and Grandad came out just before lunch. Followed shortly by Daddy, Marissa, and cousin Jeff. Had a nice little visit and chance to update them, took a few pictures...Taylor slept through much of it. Marissa was happy to go to the playground with Jeff.

Marissa was a little more adventurous today with Taylor, she got right into the crib and investigated all the things around her, and even had kisses for her. She loves her little sister so much.

They were all still here when the pediatrician (Dr. Bernard) came to give us an update. She was able to sit down with the Radiologist and look at the ultrasound regarding the liver that looked inflamed. I can't remember entirely what she said about it, but it doesn't look like there's any fat around the liver, and any inflammation that may be there is insignificant, and has been ruled out as being a possible explanation for Taylor's pain.

She is taking Taylor off isolation. They did a nasal suction on Friday to test for RSV (Respiratory Syncytial Virus), which is a common cause of colds in winter and early spring. The results came back today that she does not have RSV. So the docs and nurses no longer need gowns/masks/gloves when they come in. And I can take Taylor out of the room to go for a walk!

She's also going to lock off Taylor's IV. Taylor has been receiving fluids through it, but instead they will give her water requirements via the NG tube. They've left the IV in just in case it's needed again, but at least it's not attached to anything and Taylor is free to maneuver around her crib without getting tangled. Freedom!

Dr. Bernard (pediatrician) also suggested that we try offering her solids today to see if Taylor would take something orally. She does not want me trying a bottle until OT comes tomorrow because it's much easier to aspirate liquids, if that is in fact what is happening. Let's hope not. This afternoon a meal was sent up for me to try with Taylor. I mixed it up well, took her out of the crib and held her in my lap. She was nice and calm. I put a bit on the spoon and held it to her mouth so that a bit went onto her lips and pulled it away. She moved her lips around a bit and then relaxed her mouth, so I brought the spoon back to her lips and then she clamped them shut. Stubborn little turkey. I tried this several times but with no success. She certainly knows what she doesn't want. Why oh why won't you eat my sweet? I even think she's hungry. Her regular intake is 700mL of formula, plus three meals. All she's been getting through the tube is the formula. So there's a lot of calories that she isn't getting right now. Dr. Bernard has put in an order for a consult with Taylor's dietician tomorrow to see what we can do about beefing up the calories in the formula, and make sure that we're on track with her water requirements.

So the big plan for tomorrow is focused around the OT (Occupational Therapist) coming down to do a feeding assessment on Taylor, and depending on her findings we go from there. If she thinks Taylor may be aspirating, that will need to be investigated further. The Gastrointestinal folks are ready to get involved but they are very interested to see what the OT has to say first. There could be inflammation in the esophagus that's causing Taylor pain. That could be from acid reflux. Taylor does spit up a fair bit and it is pretty sour smelling, so that's possible. Some kids aren't bothered by reflux and some are. So we'll wait and see what happens tomorrow on the feeding front and the search for answers will go on.

I must say I was very proud of Marissa today, Dr. Bernard was updating us on all this with a full room, and Marissa was extremely well behaved and quiet. Granny and Grandad left shortly after the updates, then Marissa had a quick sandwich here in the room and then her, Daddy and Jeff left too. Thanks for the visits you guys!

Later this afternoon I was very surprised to see Ruby come through the door. She's Taylor's respite caregiver and she just wanted to come and see how Taylor was doing. She sent me downstairs for a little break and had some cuddles with Taylor. I was so touched by her wanting to see Taylor, thank you Ruby for thinking about us.

Francis' parents drove down from Medicine Hat today. With me being in the hospital with Taylor, they're going to take care of Marissa for a couple of days anyways. Marissa was pretty excited when Daddy told her that Oma and Papi were coming! Thank you Paul and Grada, we really appreciate the help.

Since we are now cordless I put Taylor in her wheelchair tonight and we went for a walk. So nice to get out of the room together! We walked around the main floor and spent some time sitting in front of the fish tank. For some time she was just staring sort of blankly, but then I noticed her eyes start following the fish that were swimming near the top. Way to go Taylor! They were sometimes hard to notice because the tank isn't very bright, and some of the fish were darker. Nice using your vision Supergirl! She didn't find Nemo though...he was hiding in and around the rocks at the bottom of the tank!

Today Taylor was holding her left arm up high in the air many times, while she was lying in the crib on her back. I was impressed with this too because it's the arm with the IV in it. There's a board taped to the underside of her arm for support and a cloth wrapped around it all. With all the extra weight and bulk on her wee arm, I think it's pretty cool that she went against gravity and held it up so well.

She slept alot again today, but her awake times were often pretty unsettled. She had a particularly bad spurt tonight for over an hour, not as bad as the extreme irritability that brought us here, but still hard to see her so get so upset. I was able to calm her down a couple of times in my arms which was so nice, she usually doesn't let us cuddle her. Her tube feeds were put a little off track today due to a kitchen delay making the formula, so as I type this post her last feed is being pumped into her tummy as she sleeps. She is so peaceful she looks like an angel...

My Sleeping Beauty...xoxoxo

Not The Party We Expected...

Taylor had an okay night last night. She woke many times crying but as soon as I plugged the soother back in she settled right away. I feel 100% better than yesterday. Had more than 4 hrs of sleep, showered, and got a latte and breakfast downstairs! All the makings of a good morning. What surprised me though is that Taylor went back to sleep this morning and slept oh so peacefully until nearly one o'clock! She was awake for a little over half an hour then she fell asleep again. She slept alot today. Not sure if she's just catching up, or if it's something else?


While she was sleeping, the pediatrician came to see me. That was an interesting conversation. The first part was around figuring out what is responsible for Taylor's cries of pain. She said that the final report from the ultrasound was back and the only thing it indicated was that the texture of the liver looks consistent with it being inflamed. She talked to the GI (gastrointestinal) people and asked if they ever see that in kids who are on the ketogenic diet, they said no. They said what they do see sometimes is increased fat around the liver. She is going to try and sit down with the Radiologist to look at the ultrasound again and determine if that could be what they're seeing, versus inflammation. One of the things that the bloodwork on Thursday was run for was liver enzymes, which came back normal. She wants to repeat it tomorrow, in case something was just starting to happen and hadn't shown up yet in the blood.

The second part of my talk with the pediatrician was in figuring out why Taylor has stopped eating and drinking. She wants to have the OT come down on Monday to try to feed Taylor orally and observe what she's doing. Another interesting thing she said was that some kids who are aspirating (taking food or fluids into the lungs) sense that something isn't right and will just stop eating. I told her that there was a question some time ago as to whether or not Taylor was aspirating but a swallow study was done and it confirmed that she wasn't. This may need to be re-investigated. She may also get the GI docs involved to look at whether or not there is inflammation in the esophagus causing pain when Taylor eats. I believe this would involve a scope.

Grandma & Grandpa came to visit this afternoon and check in on the little pumpkin. We were supposed to be having a birthday party at home today for Taylor, just a small one with my parents and a couple of Taylor's little friends. Being in hospital is certainly not the party we were expecting to be having today! I have a beautiful dress that I've been saving for the occasion...a sleeper is not what she was supposed to be wearing! Grandma & Grandpa brought her birthday present here instead, thank you so much for the beautiful clothes and the visit. Can't wait to get her out of hospital attire and into the cute stuff!


Kim, Martin & Sophie also came by today. Sophie was expecting to go to Taylor's birthday party today. She was kinda sad it was cancelled so she thought she should bring the party here. They arrived with her present, a birthday balloon, and cupcakes. I'm still in shock over how dainty Sophie was sitting in the chair eating her cupcake. She ever so gingerly ate the sprinkles one by one, then gently licked all the icing off and delicately ate the cupcake. I've never seen a toddler eat a cupcake so nicely before. It's like she took her time so that she could savour every single morsel. I should have taken a picture! Then, standing next to the crib on a stool, Sophie leaned closer to Taylor and sang "Happy Birthday" all by herself with 5 adults standing around watching her. SO impressed! It was very sweet. Thanks for the visit you guys and the adorable purple track suit.


Later this afternoon Dr. Bello stopped in again. He was pleased to see Taylor a little more contented, and having fewer seizures. We should not need to start Clonazepam to bring the seizures down. I asked him how the current EEG compares to the one before she started the Ketogenic diet. He said it shows perhaps a 20-30% improvement. Clinically though (the seizures that we actually see), we have seen about a 75% improvement.

I met my friend Carol through this crazy journey we're on, whose daughter Annika has the same seizure disorder, global developmental delays, etc. Annika is also Dr. Bello's patient, also on the Ketogenic Diet, her and Taylor are so very similar and Taylor has been following Annika's path. In my conversation today with Dr. Bello we were talking about this a little bit and he brought up a very interesting piece of information. A couple of his patients from when he was in Minnesota, who were very similar to Annika & Taylor and had no diagnosis like Annika & Taylor, were put on a drug used to treat Parkinson's Disease. With it they achieved significant seizure improvement, and significant developmental improvement. This sounds like a very huge piece of hope for us. He's going to set up a meeting with us and I guess we'll soon find out more. I am SO intrigued.

Carol came by tonight to visit and I shared this with her, she is also very excited to hear more! She brought me some yummy looking leftovers which will be my supper tomorrow, halloween candies, microwave popcorn, a drink and a piece of homemade apple pie. Honestly Carol, how do you have the time?! You continually amaze me with all that you do. Oh, and by the way...YUMMM...ate the apple pie tonight with my tea. Your pastry is divine.

NG Tube

It was shortly after 11pm last night when they decided to admit Taylor. Unfortunately they didn't have a room ready for us on the Unit until 2:45am, then an intern showed up to take a complete history on Taylor from me. I was finally left alone and went to sleep at 4:30am. I am one tired Mommy today. The nurse woke me first thing to say that the porter was coming to take Taylor down for an EEG. Nothing like getting 4 hours of sleep! So, down we went for that, poor Taylor was not a happy camper while the technician put all the wires on her head. But she cooperated for the test, fell asleep like they wanted, but was pretty upset by the end of it all. Here is the aftermath of what her head looks like after an EEG, with goopy glue all over. Talk about bad hair day!!


We were taken down for an abdominal ultrasound this afternoon. The technician took 63 pictures and went to review them with the Radiologist before letting us go. She told us that they couldn't find anything that could be causing Taylor so much pain. She also noted that ultrasound isn't the best test for kidney stones, that a CT scan is.

When the team (doctor, resident, junior resident, clinical clerk, nurse and pharmacist) came to do rounds I asked about the CT scan. There is not enough evidence at this point (based on the blood work, urine analysis and ultrasound) to indicate that Taylor may have kidney stones, so the plan is to hold off on the CT scan for now...they don't want to expose her to the radiation if it isn't necessary. Fair enough.

Taylor is still completely refusing food and drink, so the decision was made to put in an NG (nasogastric) tube which goes in through the nose, down the esophagus and into the stomach. This was very traumatic, more so for Taylor obviously, but not fun for Mommy to watch. To say Taylor screamed her head off through it is an understatement. Poor thing. One nurse was pushing the tubing in while the other held her down. Mom was here with me and I think she was holding Taylor too. As the nurse pushed more and more tubing in her nose, it started to come out of her mouth {O.M.G.}, so she had to pull it back out and start again. Thankfully the second attempt made it down her throat and into her stomach. They cut out a cute heart sticker on her face to tape the tube down, but she was feeling less than impressed with the whole thing and has been pretty unsettled ever since it went in. Mom and I managed to wash Taylor's hair in the bathroom sink before this nasty procedure was done, so here's a photo with the tube in, and better hair!

Here's Taylor hooked up to her first feed, which is just her ketogenic formula. They set the pump to administer the feed over 2 hours, quite slow, to see how it was tolerated. Everything went fine.

Shortly after the tube was in, Daddy & Marissa arrived for a visit. Thankfully Marissa didn't witness the torture, not sure how she would have reacted! Had a nice little visit, Marissa was pretty good. She had lots of questions for Taylor's nurse. She wasn't too sure about the tube in Taylor's nose though and didn't want to kiss her, so she blowed her a kiss goodbye when they left.

Taylor's Neurologist came by this evening. I just love Dr. Bello. He is so kind and compassionate. He went to Taylor's side right away. She'd been pretty unsettled since the tube went in, but he gently stroked her head and she calmed right down and just stared into his face. It was so sweet. He noticed as well that her seizures had increased and talked about possibly introducing Clonazepam short term (72 hours to 5 days) to settle them back down to her baseline. He's also looking at weaning her down on the Sabril and starting Phenobarbitol. So he brought the Sabril dose down slightly and split it between morning and night instead of giving it all at night. He asked if I had questions but my brain is kinda fried today from no sleep that I just couldn't really think of much on the spot. He's on call all weekend, so he said he'd be by again tomorrow.

I must say, I'm not disappointed about being here. I'm upset that Taylor's not well, but I'm glad to be here so that hopefully we can figure out what is wrong. We're in the right place for that!

Off to Emerg...

Unfortunately it's been a rough week for Taylor. She has been screaming in pain on and off. And feeding has become a real struggle. For the past few weeks her fluid intake has gone down significantly. Yesterday she drank better, but wouldn't eat her meals. Today she drank a little, then refused everything altogether.

I spoke with the Neurology nurse yesterday about my concern of kidney stones. She's been drinking so poorly the past few weeks, and has these sudden onsets of extreme pain. Kidney stones are a rare side effect of being on the ketogenic diet. She talked to our Neurologist and he suggested some preliminary bloodwork and urine analysis to do some initial investigations. We went to the lab at Children's this afternoon and had that done.

After the labwork was done we had a chance to talk with Taylor's dietician about my concerns over feeding. She indicated that we may need to temporarily get her back on track with a feeding tube in her nose. I talked to her about my concern about kidney stones and told her that we had been for labwork.

I have tried to get in to see Taylor's pediatrician but he is fully booked. Between the pediatrician's office, the nurse in Neurology, and the dietician, all have advised going to Emergency if the screaming continues. She was fine today while we were at the hospital for labwork, so we went home.

Unfortunately the painful cries started again this evening, so I packed up and headed to Emerg. When we got to Children's, the emergency room was full, but because of Taylor's increased seizures and the fact that she is more susceptible to infection due to the Ketogenic Diet, we were taken to a bed right away. The triage nurse noted a rash which had just appeared. Tiny red dots around her head, behind her ears, all over her torso, back and diaper area. The doctor thought that the rash looked viral. The lab work from earlier in the day had come back, all the bloodwork was fine. The urine had some white blood cells, indicative of a urinary tract infection, but because the urine sample was collected by bag, they wanted to re-test the urine and use a catheter to collect it. So that was done and when it came back, there were no white blood cells, so the doctor feels pretty confident in ruling out a UTI. There was however some blood in the urine, could be a sign of kidney stones, or could be from the catheter. They also did a chest x-ray which came back clear, however there was one area on it that the doctor was unsure about. So the decision was made to admit us, do an ultrasound in the morning and go from there.

So here we are at Children's...again :-(