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 :-(

Happy Birthday Supergirl!

We had a great family day together to celebrate Taylor's 2nd birthday. It was beautiful outside so we went out to Kayben Farms to the Pumpkin & Scarecrow Festival! What a fun place it was. Marissa had a great time, and Taylor got to partake in some of it which was nice. The jumping pillow was a hit for Marissa, Francis and Taylor sat on the edge of it and got bounced lightly which Taylor loved...

Taylor also enjoyed being pushed for a while in the hammock swing too, it hugged her in really nicely so she was fully supported...

They had a huge play structure with a great climbing wall and this slide that Marissa went down many, many times!

Mommy got some cuddles in with Taylor while Marissa played herself out...

Taylor had a little ride on the horse swing, with some assistance of course...

Unfortunately the pumpkin patch was pretty picked over, but we managed to get a cute picture of Marissa & the birthday girl sitting in the pumpkin display...

All in all, it was a wonderful day out in the sunshine. When we got home Taylor had a special birthday meal complete with candles. Ketogenic chocolate pudding, strawberries, and whipping cream yogurt...not quite chocolate cake with buttercream frosting, but special nonetheless!

Happy Birthday my darling!
xoxo

Arm Splints

Well, we were at Children's yesterday for a feeding appointment. We have been working on introducing some small chunks of soft cooked fruit and veg and work on getting her to chew. It's going not too badly, there's some gagging when the chunk doesn't quite make it over to the side onto her teeth. The OT suggested some hard munchables like sticks of celery or pepperoni or beef jerky. Something that she isn't really going to eat, but that I can place to the side on her teeth and hold there to encourage chewing.

The OT also made Taylor some arm splints. Idea is to wrap them around her arms and when we put her in a sitting position with her hands on the floor between her legs, she will get the idea that she can put weight through her arms. And then she will hopefully start doing that on her own without splints. She just doesn't realize that she can use her hands and arms to do things and help herself.

When Taylor's aide was here tonight we gave them a try, and she held herself unassisted for a couple of seconds before falling over. It was pretty cool :-)

Dengis Celebration

Had a great afternoon celebrating three birthdays in the Dengis family. Taylor's going to be 2 on the 9th, Clara turns 2 on the 7th, and Scott will be 3 tomorrow.

Taylor and her newest little cousin Bo getting acquainted on the floor!

There's 6 little Dengis' now...Marissa and Taylor...and the other 4 are actually their cousins' kids. Marissa and Taylor's cousins are all grown up and having kids of their own! Not sure what that makes them to each other...second cousins perhaps? Anyways, it was great to have them all together, and we got a fun picture of the group of them on the floor together, may have to make that photo a yearly tradition!

Swinging!

I found out about a playground in our old neighbourhood that has some Taylor-friendly equipment. We headed over this afternoon and for the first time Taylor could enjoy a swing! She had a ride on it with her sister, then she flew solo on it for a while, kicking her legs happily. It was great! She even had a little spin on the merry-go-round!

A few things to report on lately. I had the opportunity of enjoying an afternoon last weekend with three amazing "special needs" moms. I feel very grateful to be able to connect with this group of gals. We all have girls around the same age, all with very complex, lifelong conditions. It wasn't about how difficult our lives are, we all understand that without it needing to be said, it was a very positive, supportive, and fun afternoon of caring and sharing. And understanding each other. These women, they get it, we live the same struggles of not walking or talking, not knowing what lies ahead in their future. But through all that we find, treasure and celebrate the little joys that come our way with our beautiful girls, and love them more than you can imagine.

Ever since Taylor was so sick back in January with the kidney and blood infections, we have seen quite a regression in her vocalizations. For much of the day Taylor is very quiet, not cooing nearly as much as she used to. When we last saw the Speech & Language Pathologist she put in a referral for Taylor's hearing to be evaluated.

We went to Hearing Clinic this week and the Audiologist did a few different tests. The first was a Pure Tone Threshold test which is a behavioural test used to measure hearing sensitivity. The audiologist sat in a room directly in front of Taylor behind glass and made different noises into a microphone that we could hear in either a speaker on the left or the right. Taylor's responses were probably supra threshold. The Audiologist wasn't comfortable making any assumptions on this test because it's very difficult to read Taylor for responses, especially without having observed her on a regular basis.

The second test was a Tympanogram, which tests the condition of the middle ear and the mobility of the eardrum. It showed good pressure in her right ear, but negative pressure in her left. This could possibly be due to the fact that Taylor has a bit of a cold right now, or it could indicate middle ear hearing loss.

The last test was an Otoacoustic Emissions test which measures an acoustic response that is produced by the inner ear (cochlea), which in essence bounces back out of the ear in response to a sound stimulus. The test is performed by placing a small probe that contains a microphone and speaker into the infant's ear. As the infant rests quietly, sounds are generated in the probe and responses that come back from the cochlea are recorded. Once the cochlea processes the sound, an electrical stimulus is sent to the brainstem. In addition, there is a second and separate sound that does not travel up the nerve, but comes back out into the infant's ear canal. This "byproduct" is the otoacoustic emission. The emission is then recorded with the microphone probe and represented pictorially on a computer screen. The audiologist can determine which sounds yielded a response/emission and the strength of those responses. If there is an emission present for those sounds that are critical to speech comprehension, then the infant has "passed" the hearing screen. So, there was an emission present in Taylor's left ear, but not in the right. This could be because Taylor's breathing was noisy (from her cold), or it could indicate inner ear hearing loss.

At the end of the day, the Audiologist reported that she can't rule out mild to moderate hearing loss due to Taylor's cold and the chance that it affected the results. So, we get to go back and do it all again in a month when she's better. I'm not going to make any of my own assumptions but the fact that she doesn't vocalize very much and that she really only shows response to loud noises has always concerned me to a certain extent.

Heaven's Very Special Child

My cousin's wife sent me this poem today. It made me cry of course, but it's beautiful and so I thought I would share. Thank you Jenn.

Heaven's Very Special Child

A meeting was held quite far from earth

"It's time again for another birth,"

Said the Angels to the Lord above,

"This special child will need much love."

Her progress may seem very slow,

Accomplishments she may not show

And she'll require extra care

From the folks she meets way down there.

She may not run or laugh or play

Her thoughts may seem quite far away

In many ways she won't adapt,

And she'll be known as handicapped.

So let's be careful where she's sent

We want her life to be content

Please, Lord find the parents who
Will do a special job for You.

They will not realize right away

The leading role they're asked to play

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for this gift from Heaven.

Their precious charge so meek and mild

Is Heaven's very special child.

Different Treatment to Consider

Well, Neurology came to see me today. The EEG showed minor improvement from the last one. The prednisolone is only a short term treatment. We were told that we could either bump up the dose slightly for another week and then start weaning her off, or start weaning her off now. The first thing they suggested as the next line of treatment was the Ketogenic Diet. Ugh. Most of what I know about it is that it's an enormous amount of work with calculating, measuring, weighing and preparing the meals. It's a mathematically calculated, doctor supervised diet high in fat and low in carbohydrates and proteins, and strictly limits both calories and liquid intake. It helps to control seizures and allows many children to become both seizure-free and drug-free. We know a family whose daughter is on the Ketogenic Diet and it has reduced her seizures by 90% and she is in the process of weaning off several medications.

Apart from that suggestion, they said there are a couple of other drug options to consider as well. They wanted me to talk to Francis about it and they'd be back first thing in the morning to see what direction we are wanting to take. I feel like they left this massive load on my shoulders. I'm not a doctor, how am I supposed to know what's the best route to take, I don't know how that is my decision to make based on a 5 minute conversation with a neurologist that I've never even met before. I hunted her down a little while later and said that I'm uncomfortable making a decision like this so quickly and she said that's okay, it's not that time sensitive.

This is so overwhelming. I don't know what to do. We kind of thought that at some point the Ketogenic Diet would come into play, but we certainly weren't expecting it yet. So much to think about.

On a lighter note, the Olympic Torch came to Children's this morning! I got the okay to wheel Taylor down with her IV pole to see the torch. It's Day 82 of the Vancouver 2010 Olympic Torch Relay. We got escorted to a special patient section and had front row seating, we were literally right infront of the action, how cool is that?!!! I watched the news tonight and we almost made it...I could see Taylor's IV pole, and the top half of her stroller. If the camera had come down one more foot Taylor would have made the news :-)

Another EEG

Taylor's follow up EEG was booked for today to compare it to the last one prior to her starting the prednisolone. Since we are still in hospital they did it as an inpatient. Her seizures have only slightly decreased since she's been on the prednisolone, so it will be interesting to see what the results of the EEG indicate.

The number of seizures Taylor has in a day is between two and three hundred. Yes, hundred. They mostly present as split second jumps resembling a startle response. She's also having some new ones more recently that are eye flutters, some blank stares, and some head drops. They vary in intensity and frequency. One night I sat and watched her and made tick marks in my book, over a 4 hour span I saw 29 seizures. Another night I counted 40 seizures in just half an hour. I've never sat and counted the number over an entire day, I don't think I want to know what the actual number is, it's probably more than I think.

Whatever the number, it's way too high, and we desperately need to get control of them. I just wish there was a magic pill to make them all go away.

Renal Ultrasound

IV antibiotics continue, and this morning we were called down for a kidney ultrasound. That proved to be quite the experience!

When we got into the room I went to take a picture of Taylor with the ultrasound machine behind her. I've been documenting her story right from the start, so that one day she can look back and hopefully read all about her journey. So as I went to take the picture the technician stepped back, didn't want to be in the picture which is fine, doesn't matter to me. After she squirted the gel on Taylor and put the transducer on her I zoomed in on Taylor and just got the technician's hand in the photo and kept the rest her out of it. At the end before she left the room she tore a strip off me saying that she is a health care worker, she's here to perform a service, she's not interested in having her picture taken, not even her hand, and how dare I. She even said "maybe you think this is fun or want to put it on Facebook"...yeah this is a freakin riot lady. What a cow. She reiterated that she's a health care worker and that if she wanted her picture taken she'd work in a resort. Yeah, well let me know if you do because that's a resort that I will never visit. I'm still stunned by this woman and how unbelievely rude she was. Thankfully she's the only person in Taylor's entire journey that we have had such a bad experience with. Out of spite on my part, I hope you thoroughly enjoy the photo attached to this entry, technician's hand included. Cause you know I just take photos of Taylor's hospital experience because it's fun...honestly how absurd!

Anyways, back to the ultrasound. Once the doctors reviewed it and came back to the room to see us they said that both kidneys are quite swollen and infected. With a kidney infection, they usually only see one kidney infected. So this is going to mean a longer course of treatment. Still just 14 days IV, but an additional week of oral antibiotics once we go home. Also, one tract going from the kidney to the bladder is slightly enlarged. This will be further investigated with a VCUG (Voiding Cysto-Urethrogram) to determine if she has urinary reflux, a condition that causes urine to move backwards from the bladder back up to the kidneys.

Rough Day

Well, by late this morning the diagnosis of urosepsis was made. Taylor had a kidney infection and blood infection. This is very serious but treatable. If untreated though, sepsis is life threatening. Thank god we came when we did. I can't even imagine where things could have gone if we hadn't been to the pediatrician's office yesterday and get sent to Emerg.

The bacteria growing in her urine and blood is e-coli and it is sensitive to both of the IV antibiotics that they started last night, so the treatment is appropriate. Duration of IV treatment is 10-14 days, and they want to go with 14 under Taylor's circumstances to be safe.

Taylor looked her worst today...sunken eyes, very lethargic and sleepy, unhappy. By this afternoon the doctors came back in to see us and asked us question after question about how Taylor has been in comparison to how she was presenting today. After we answered everything they said that they are actually quite worried about her and they think she has meningitis. I think our hearts dropped to the floor the second we heard it.

The next step was a lumbar puncture (spinal tap), needle in her spine to draw out cerebrospinal fluid. This was not pleasant. A nurse had to get up on Taylor's bed and hold her down so that she couldn't move. Half an hour later it was done, and then the wait. The longest two hours ever. But the wait was worth it because we were in the clear. Taylor does not have meningitis. Someone is definitely looking out for my little girl.

To say it was a rough day is an understatement!

Admitted to Children's

Last week I called our Neurologist's nurse because Taylor has been peeing like crazy and it has a very strong smell to it. I wasn't sure if it was something I needed to be concerned about, because it started shortly after she went on the prednisolone. She talked to Dr. Sarnat and had us go for labwork that night. They took bloodwork but we were unsuccessful getting a urine sample from Taylor. The bloodwork came back fine, Dr. Sarnat was concerned about blood sugar levels and they were normal. The nurse said we should follow up with our pediatrician.

We went to see him this morning to address a list of concerns, the peeing being one of them. He did a thorough examination of her and asked us to go straight to Emergency at Children's because he was suspecting a kidney infection. He was suggesting that Taylor should be admitted to hospital for at least a few days and at the same time have them investigate his concerns about her failure to thrive, she hasn't gained any weight in four months.

So we headed straight to Emerg from his office and didn't have to wait long before they took us back. Once we got in to Emerg we had to wait for quite a while in our room before the doctor got to us. Finally they took a urine sample via catheter and sent it for testing. Results came back very quickly confirming a Urinary Tract Infection (UTI). Apparently they are very common, and one of the top 10 things that little ones are admitted for. How she got it was likely three-fold. First, because she's a girl and the urethra is very short, secondly she's in the age group where they are most common due to being in diapers, and lastly because she's on prednisolone (which suppresses the immune system) so her body wasn't able to fight off the infection on its own.

The doctor admitted her as soon as the UTI was confirmed and said that it would require IV antibiotics and we'd likely be here for a few days. I came home once she was down for the night so that I could pack some clothes, and then headed back to the hospital to stay.

Little Swimmer

Today was a special day, Taylor's first pool experience! It was in the pool at Children's with her Physiotherapist. Unfortunately I was feeling flu'ish and didn't want to take any potential germs to the hospital, and Francis had an important work meeting. My mom saved the day and took Taylor for her first time in the pool and when they got home she was teary eyed and said it was the best time she's ever spent with Taylor. I must admit I was initially kind of jealous that I missed the experience myself, but I'm so very happy that Mom got to have that special time with Taylor. Taylor was a little unsure when they first got in, but the water was warm as a bath and she soon relaxed right into it and really enjoyed herself. Then, as they got out of the pool, they were wrapped in warm blankets. How nice is that?!

Seizures Continue

Back to our Neurologist today. Taylor had a cranial MRI a couple of weeks ago and Dr. Sarnat went throught the results with us.

He said that it showed good maturation taking place. He also said that there was some improvement in the thickness of the corpus callosum. This was very surprising to us as we were of the understanding back in March that this malformation would not change, that the corpus callosum was thinner that it was supposed to be and always would be. So this is a positive thing for sure. I'd be hooting and hollering if it was the only reason for Taylor's developmental delays, but it's only a contributing factor.

The other contributing factor is the seizure activity. Because Taylor is having so many seizures, the brain just cannot organize itself to allow normal development. Her seizures are myoclonic bordering on infantile spasms, which they say are the worst kind because they are the most difficult to control. They're multi-focal, meaning they come from different parts of the brain. If they were focal, that could make her a candidate for a surgical approach.

The change in the dose of Sabril has not made any impact on the number of seizures, so the next line of treatment being recommended is prednisolone, a steroid. It has many side effects, it suppresses the immune system, increased appetite/weight gain, ulcers, etc. But it can be very effective, so we're going to give it a try. She'll start it right away and we'll cross our fingers that this is the ticket to control.

The last reason behind Taylor's global developmental delay is the 'unknown' factor. Her epilepsy is "idiopathic", a special word basically meaning they have no idea why she has it. In all of Taylor's tests, metabolic workups, muscle biopsy, etc...they have not found anything that they can say is the cause of her epilepsy.

New Ideas...

Taylor's presentation to Dr. Dulac was this morning. I've never seen so many doctors in one room, all eyes on my little girl. Dr. Sarnat had given him her history beforehand, then Dr. Dulac took some time observing Taylor and examining her before he said anything. He came across very warm, very gentle.

Taylor's been on Topomax since August and based on the EEG from 2 days ago, it's not doing anything to control the seizures, so Dr. Dulac's recommendation...medication wise...was to wean her off it. We had already started to wean her off the Sabril, but his suggestion was to actually bring it back up and increase the dose slightly. All the information that we previously had about Sabril was that it was to be used short term because of the side effect of toxicity to the retina, causing peripheral vision loss. He indicated that those side effects were more to do with adult patients, not children. Further, it was beneficial to give it once a day, in the evening just before bed, rather than twice a day as we had been. Reasoning being that the drug would work its way through the bloodstream over the next several hours while it's dark and her eyes are closed, but it still acted as an anti-convulsant for up to 48 hours. If this change doesn't have any effect on the number of seizures over the next few weeks, his next suggestion is steroid treatment.

Dr. Dulac stressed that the most important thing is to get the seizures under control, because the next high risk period is 2-3 years of age, a time where there is such an incredible amount of cognitive development. Such frequent seizure activity is hindering Taylor's ability to develop, so seizure control has got to be the focus.

Unfortunate Confirmation :-(

Well today was the EEG. I sat there holding Taylor after all the wires were attached to her head and recording was under way. The technician was watching the screen, and asked if Taylor just had one of her jumps. I said "yes" and she responded "okay". A few seconds later I said "there's another one" and she responded "uh huh". So I asked her straight out if they were seizures. Her response was "I'm actually not allowed to say, let's just say this is a VERY productive recording". I felt sick as I sat there thinking of how many months we've been watching Taylor have these seizures and we had no idea.

Seizures???

We saw Dr. Sarnat today and addressed a concern that we suspect Taylor has been having seizures for quite some time, but we didn't realize it.

At therapy recently, Taylor's physiotherapist noticed one of them and said she thought that it looked like a seizure. She has these startle type jumps as if she heard a loud noise across the room, but she has them constantly even in complete silence. When she said that to us I got very nervous, because she has so many of these, constantly all day long, and we've been watching her do that for months. Gulp. Never for a second did we think those could be seizures.

So Dr. Sarnat is sending Taylor for an EEG...TOMORROW...now that's impressive. What's more is later this week she's also being presented to a visiting doctor from Paris. His name is Dr. Olivier Dulac, a leading Pediatric Neurologist and world expert in Infantile Spasms. What an incredible opportunity to get the input of another seasoned Neurologist.

Mommy Went Shopping...

So Francis said that if I ever bought shoes for Taylor I'd be toast (because Marissa has quite the collection of hand-me-downs).

HOWEVER, Taylor's physiotherapist said that it's important for her to have shoes with good support on when she's in the standing frame. AND Marissa's hand-me-downs don't include proper shoes in the right size, Taylor's feet are pretty tiny.

Clearly, under these circumstances, a shopping trip was necessary. Taylor is the proud new owner of her first real pair of shoes. And aren't they gorgeous! Daddy can't even complain because they were on clearance for JUST $16.25 (regular $65)! What a bargain, I should have bought more :-)

Bad Hair Day...

Have you noticed Taylor's crazy hair and wondered what the heck we were doing?!

Well let me clear up a couple of things. No, there is not product in her hair. No, we are not intentionally going for the "faux hawk" look. But YES, it has a mind of its own!!! It's quite long all through the middle and as much as I comb it down after she has her bath, it just springs back to life as soon as it's dry ... too funny! My friend Kim said that it kinda looks like Mt. Rundle!

Little Miss Rundle ... crazy hair or not ... you're beautiful to me!

Torture Device???

Does it look a little like poor Taylor is being punished?!?!

Not really! We were at Children's today for therapy and Jeanette brought in a standing frame for Taylor to try out. Taylor needs to work on standing and this is what she needs to help her since she can't do it on her own. It's time for her to start weight bearing through her legs and work on developing muscle strength. We're supposed to try it for 15 minutes twice a day and build up to an hour a day. We were able to take it home and we can hang onto it until we can get one of our own ordered. Our next appointment we'll be looking at the "Buffalo" and that's likely to be the one we'll get.

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Not the most attractive addition to my living room, but it sure is nice to see Taylor upright instead of lying on the floor! She seems so much bigger! Marissa thinks it's pretty cool, except she keeps referring to it as "the ugly thing" ... I think she heard me describing it as kind of ugly ... oops!

Just Keeps Getting Better

Another great day for Taylor. The Occupational Therapist from CNIB (Lara) was here this morning for a home visit. She did a contrast test on Taylor to see how much contrast Taylor needs to capture her visual attention. She did awesome!!! The test was simply showing her an assortment of faces on big white cards. The first one was a black and white face, which is 100% contrast. They went down from there and the faces looked like a lighter and lighter shade of grey on white down to the very lowest which was nearly white on white. Taylor managed to see all the way down to only 5% contrast!!!! The 10% one was better, but the 5% contrast did capture her attention. Way to go girl :-)

Lara said that we can start working on establishing object permanence so that when Taylor drops an object and it goes out of sight/sound, she will learn that it is still there and that she can find it again. By using objects with noise like bells or rattles or squeaky toys, when she drops it we can make its noise and see if she turns to look for it. If not we can guide her hand and or body towards it. In time she will be able to find the object again after dropping it, rather than just thinking it's gone.

Holding on Tight!

Look at my talented little girl, doing a NEW first. She's holding onto her sparkly wand with BOTH hands and holding it up high and she's totally focused on it. Taylor has been holding onto the right item (has to be small enough) in her left hand for short periods for a little while now and recently started doing the same with her right hand for even shorter periods. Last week she held onto the wand with both hands and today I managed to get it on camera. I'm a very proud mommy, these little milestones mean SOOO much.

Happy Halloween

Happy Halloween everyone! Isn't my Taylor just the cutest little ladybug you've ever seen?!?! We paraded her around Southcentre Mall in costume while Marissa did some trick-or-treating, then she was my partner back at home answering the door to all the wee trick-or-treaters who knocked. Sadly there weren't that many, which means we have hoards of chocolate left over. Oh darn, I guess we'll just have to eat it ourselves :-)

New Set of Wheels

Well, it looks like Taylor`s near future is going to include a wheelchair. This is a difficult one to swallow because it draws attention and screams out loud that something is wrong. We truly believe that this is just a short term need, at least until she can support herself in a sitting position which is likely to take another year. As much as I don`t like the idea of a wheelchair, the support that the insert will give her is amazing. For her hips, her trunk and her head.

The foam inserts that they originally made to put in her stroller just aren`t working, they don`t give her firm enough support and she`s always flopped over with her head hanging. The wheelchair and insert is fully adjustable as she grows, so for where Taylor is at right now it really is going to give her the support she needs. We`ll have to manage with the stroller for a bit longer, it can take up to 3 months to get the wheelchair, seems like such a long wait.

It`s so easy to stare at people in wheelchairs or with at people with special needs, I hate to admit that I`ve done it myself. Boy does it ever feel different to be on the receiving end.

Black & White Birthday Party

Today was a great day! Taylor celebrated her birthday with the Dengis' a few weeks ago and today we had a party at home with my family, a few of our close friends, and Francis' parents were able to make it down from Medicine Hat too. We had a black and white theme. It is what Taylor sees best, so we wanted her celebration to be as stimulating for her as possible. We decorated with black & white streamers and balloons, we had a black & white birthday cake, presents were wrapped in black & white, some of the gifts themselves were black & white, and almost everyone was even dressed in black & white. It was great! Taylor was a happy little birthday girl, she enjoyed lots of cuddles, let Marissa open all of her presents, and indulged in a little birthday cake. What more could a 1 year old ask for :-)

Last Holter???

Well, we went to Cardiology Clinic today for them to put a 24 hour holter monitor on Taylor for hopefully the last time! They just want to see if the arrythmia is still gone since she's been off the beta blocker meds. Once our Cardiologist, Dr. Clegg, has reviewed the results she'll let us know and hopefully that will end our need for Taylor to have a Cardiologist!! One less doctor, one less med, it's all good :-)

Surgery Clinic

Back to surgery clinic today, this time thankfully there was not a 3 hour wait, we got in pretty much right on time. Dr. Wong is pleased with how Taylor's incision has healed and he has given us several sheets of DuoDERM dressing. We just cut it with rounded edges a little larger than the scar itself and stick it over like a bandaid, and change it every 5 to 7 days. There's something in it that will help the scar heal nicely, turn white, and prevent the line from thickening. He also gave us the name of a scar treatment gel in the US for us to order, called Dermatix, so we have ordered that too.

Sensory Room

Well today at Children's our Infant Team appointment was in the Snoezlen Room, a sensory room. Taylor really enjoyed it. She's always liked looking at lights, and in this room they dimmed the main lights and had several different 'light' things for her to explore. There was a tunnel we put her in that was all black with thousands of tiny fibreoptic lights around the ceiling, I wanted to go in there myself :-)

There was a bubble tube with a switch to change the colour of the light shining in it, a huge gently vibrating beanbag type chair, and these skinny (like spaghetti) light tubes. I wish we had some of those at home. She enjoyed lying on her side and looking at them, they changed colours too. There were other things in the room, but I think that was all we used today. We'll have to go back another time for sure.

Happy Birthday Taylor!!!

Our beautiful Taylor is officially 1 year old! In many ways this year has been long and very trying, but I still look at her and can't believe that she's already ONE! Where does time go?! We just spent a quiet night at home, gave Taylor a couple presents, and her very first taste of cake. We had some mini "Crave" cupcakes and with a little assistance from Daddy, she sucked back that icing with no trouble whatsoever. I'm sure she'll find breakfast disgusting tomorrow now that she knows what other yummy things are out there!!! Too funny. After all the excitement she passed out in her high chair surrounded by her gifts. Oh to be a baby :-)

Wahoo!

Taylor does NOT have Mitochondrial Disease!!!!!!! Dr. Wong called today with the good news. He got the results of her muscle biopsy and it didn't show any abnormalities. This is a GIGANTIC relief. Mitochondria are what give every cell in your body energy to sustain life. But I don't care anymore because that is one road we DO NOT NEED TO TRAVEL DOWN :-)

Celebration With the Dengis'...

Taylor's cousins Stephanie and Leah planned a joint birthday celebration today for three of the Dengis babies. Taylor & Clara (Stephanie's daughter) are both turning 1, and Leah's son Scott is turning 2. It was a great day with the Dengis', fun to watch the wee cousins play together, and a nice chance to visit everyone. Daddy got to take Marissa and Taylor to the party but unfortunately I had to miss the festivities as I was in Vancouver for another celebration, the beautiful wedding of a dear family friend. Thanks Steph and Leah for putting on the party!

Therapy Kind of Day

The therapists at CNIB and Children's are partnering to provide group therapy sessions so that we as parents can benefit from the expertise of professionals specializing in infant development and vision loss. The point of the group is to provide parents the opportunity to network and share ideas, to support parents in facilitating skill development in all developmental areas during every day activities, to provide parents and child the opportunity to practice these skills, and to increase awareness of additional resources.

The first session was today on sensory exploration. They had several stations set up including a vibration mat (which Taylor loved and then fell asleep on), the little room (always a hit with Taylor), messy play on a lightbox wrapped in saran wrap (we skipped on the messy stuff and found some squishy stuff in ziplocs instead), various musical instruments (that we didn't get to), and "Nessie", a huge musical water instrument (unfortunately Taylor didn't find that too interesting today because she was tired).

This afternoon we had an appointment with Infant Team back at Children's. We're still working on much of the same positioning techniques but talked about a few new things...

• From her back, pulling Taylor up to sitting, allowing her to put her arm out to start pushing through her arm and pulling up through side.
• When on her tummy, pulling one leg in at a time towards hip to help her propel herself in commando crawling.
• Try pausing in movement games like bouncing on knee and waiting for Taylor to "tell us" (ie facial/body movement) that she would like to continue.