Baby Steps...

Gearing up to see the surgeon tomorrow, and hopin' that we leave there with our g-tube surgery date!!

Shar called me from upstairs with a photo op as she was getting ready to bath Taylor this morning. I ran up and she was in the bathroom on the toilet. Of course it's not in the realm of possibilities right now, but when Shar took her diaper off to put her in the tub, it was dry. She thought what the heck, lets put her on the potty seat and see if we fluke out on timing. No such luck, she peed as soon as she got in the tub! Even though potty training isn't realistic, she sure looked cute sittin' there!

Still offering Taylor a bottle every day, just to keep her working every day at oral feeds. We're up to about 60mL a day by bottle now. And that's not a quick chug-a-lug...it takes some time. Today I made her some 'tastes' from the list of options the dietician sent me. I cooked some carrots nice and soft, mashed them up real good, then added a huge glob of butter to make it the perfect ratio for her ketogenic diet. I snuck a taste myself and it was rather tasty, too bad we couldn't eat that much butter with our carrots! Anyways, she ate about a teaspoon of it! It took about half an hour of one wee speck at a time, but she managed to eat 8 grams, which looked like about a teaspoon altogether. Baby steps!

Bitter cold and snowy out there today, staying warm and cozy inside, and enjoying the lovely tulips I bought yesterday.

Had fun at Dollarama too. Bought a whack of St. Patrick's Day goodies so we can have a fun celebration at home on the 17th. When I was checking out at the till the lady asked me why I celebrate the day? I told her because I was born in Ireland...but I think it's more about an excuse to have a fun little party at home with the girls. Now to plan some kind of tasty green supper!

Snow Pie

Marissa and Shar buried Taylor in the toy bin the other day, and a photo op it sure was. Too cute seeing Taylor's head peeking out of all the stuffies in the bin. Then Marissa had to have a turn too of course!

Shar's been working on some kneeling with Taylor over the ottoman where we keep all her toys. She balanced Taylor over the edge just right and was able to let go for a few seconds!

Look at that little bum :-)

Marissa was pure entertainment on Friday afternoon while Taylor napped. She was all decked out in her dress up clothes and decided that she was going outside for some fresh air. I opted against the -11 temp and stayed in. Marissa geared up and went out in the backyard. Pretty soon she was asking for a container so that she could make snow pie. I granted her wish and gave her a couple plastic dishes. She returned with her snow and came inside. She then needed a really big bowl so I put one on the island, she dumped her snow into it and start mixing up her snow pie. Then she changed gears and decided to make snow soup. Add water. And more snow. Pepper, bay leaves, rosemary, and some gravy browner. She was so cute, leaning over it to take a smell just like a chef, sneaking a taste here and there. She felt like such a grown up and had a big smile on her face. I watched her concoct her special soup and just clicked away, took a ridiculous number of pictures! But it was fun, and she was having a ball. It turned a little serious when she set the table and was quite intent on us eating this for supper! Managed to sidetrack her and dodge the dirt laden snow soup, and dined on pizza instead. Thanks for the laughs monkey!

 

The Stars Are Aligned...

...or something like that!

Yesterday morning Taylor and I were at the hospital first thing for the pH probe to be inserted. It was thinner than her NG tube, but not very bendable, so with Taylor's cries and held breath, they had a really difficult time advancing it. They got it after a few tries and then went through the little recorder with me so that I knew what buttons to press during mealtimes, spit ups / wet burps, other GI symptoms, and each time we change her from a lying position to an upright position. Lots of button pressing!

We went back to the GI lab this morning after 24 hours and they removed the probe. The recording was downloaded right away but I was told that Dr. Wrobel is away until Monday and then she's in clinic so they weren't sure when she would analyze it. I have to say I was a little disappointed. I was under the impression that we'd have results right away from this.

Well, this afternoon I answered the phone and much to my surprise it was Dr. Wrobel! And she had gone through Taylor's recording! YAY! Her next words were magic to my ears...

"The recording was good, there's not a lot of acid coming up"

So apparently everyone refluxes, but it doesn't always come up enough to feel or cause any symptoms. It's "normal" to have 27 episodes over a 24 hour period. She said that Taylor had several episodes (29) but they are very short lived. It comes up and goes back down very quickly. Taylor had a total of 15 minutes of reflux over the 24 hours. That is 1% of the time. Normal is 4%. Dr. Wrobel is very pleased with the result and is very confident that Taylor does not need a fundoplication. Excellent news!

Next I called Surgery Clinic, as our appointment with the surgeon was waiting on us seeing GI and determining if a fundoplication was needed. MORE magic to my ears...

"Dr. Sigalet has clinic on Tuesday morning, it's very busy but I can squeeze you in for 11:30am"

Wow, it's really coming together. I can see the light at the end of the tunnel. How crazy that the light I'm so anxiously awaiting is surgery. Let's hope when we see him on Tuesday that we get a surgery date nice and quick! G-tube we're ready for ya, bring it on! Give me back the little girl who loved to have her face softly stroked.

On top of all that good news, I actually had a reasonably productive day. My ever growing mountain of laundry managed to get sorted and four loads done. To be continued...and hopefully finished...tomorrow. I cleaned three out of four bathrooms. Dusted the upstairs. Cleared away some clutter. Hope I can stay inspired to keep going and get the rest done. It feels good. I love our house. But clean and organized puts it on a whole other level.

Suppertime is an ongoing battle with Marissa but tonight she hoovered it down and was such a pleasure!

Yes, I do think the stars are aligned indeed. It was a great day all around.

Comfort & Joy

We all find comfort in so many different things...

* pajama day at home when it's cold and snowy outside
* my mom's delicious dumpling stew
* snuggles with my girls
* relaxing at Starbucks with my single, venti, vanilla, no foam latte
* curling up with a good book, the kind you can't put down
* heated seats in the van

For Taylor...comfort comes by way of a small plastic pacifier. Thanks to her Granny, Taylor has lots of comfort tucked away in her armoire...

And we never ever leave home without one!

Grateful

We are so very fortunate to live where we do. Over the past two years we have discovered incredible supports and services available to help Taylor. Supports and services that are completely funded. Words cannot even describe how grateful we are for the things we have access to. Things that we had no idea were out there until we needed them.

Now we can add another to the list. Rotary/Flames House called us a couple weeks ago to arrange an meeting with Francis and I. Our neurologist's nurse put in a referral for us some time ago and once they reviewed Taylor's file we were accepted.

Rotary/Flames House is a hospice for children located right next door to the Alberta Children’s Hospital. Calgary is the first city in Alberta and only the sixth in North America to have a free-standing, community-based facility to support families of children facing progressive, chronic or life-limiting illness.

We had our meeting there yesterday morning and are so blown away by the house. It is very beautiful, inviting, and homey. Nothing hospital-ish about it. They are providing us with respite care on a planned or urgent basis for up to 30 nights per year. Care is provided 24 hours a day, by a team of trained healthcare professionals, to allow families time for rest and renewal. They ask the family to stay with the child during the first planned visit in order to help them get to know the child and their routines.

They have two family suites and 5 other bedrooms for children and youth. Family members my choose to stay with their child at any time to provide extra support and familiarity. Stays may be anywhere from 1-14 consecutive nights. When we stay there with her all our meals are provided, they have a chef that prepares the meals and a large kitchen and dining room where everyone eats together. They have an amazing multi-sensory room which provides tactile, visual and auditory stimulation.

The living room has a fireplace and a unique wall with a large table for gatherings and some shelves for games. The library has a large variety of books for both adults and children. The Flames room is a place for play and entertainment. it has Wii, Xbox and Playstation game systems, a large TV, air hockey and football. The rumpus room houses many toys for all ages as well as computers for homework or games, a stage for shows and a piano. The den is a room with more games and a TV, as well as a high speed computer for gaming. It is geared to older children/youth and families. Upstairs are the bedrooms, a beautiful sun room with a variety of chairs and two walls of windows, a lounge in front of the nursing station with many chairs and a big screen TV, and a tub room with a special hydrotherapy tub and wheelchair accessible shower. Outside is the lighthouse which is a heated patio with constellations on the ceilings made of lights.

It's just an amazing place. I am so looking forward to the four of us spending a weekend there as a family to get a feel for how it all runs and the care that Taylor will receive when she stays there on her own.

So very fortunate and so very grateful that we have this.

Not so grateful for Taylor's tube. That damn tube. The tape and duoderm holding the tube in place on her face was peeling off. Shar offered to help me replace it before she left but I said I'd get Francis to help me when he got home. Later in the afternoon I grabbed the camera to steal a picture of her 'cause her hair was so crazy funny she looked like Kramer. I turned around to put the camera down on the kitchen island and suddenly she was screaming her lungs out. She pulled the tube out. Mother of god. Shoulda taken Shar up on her offer. This is the third tube change in less than a week. Unhappy me. Unhappy Taylor.

On a happier note, it's Friday night! Pizza night. Marissa was her usual crazy self. Baths are supposed to be calming aren't they? Well she finishes her bath and starts bouncing off the walls. She's not much of a dancer. Loves going to dance class. But rarely will show us what she learns. Well tonight, she was watching Playhouse Disney before she went to bed and suddenly started rockin out. Bustin a groove. It was a riot. Got a few shots of the dancing queen!

Good Day

Yep, good day it was!

The GI Lab called to book Taylor's pH study...wait for it...wait for it...

Next Wednesday!! Fantastic news!!! Things are happening nice and quick! So, here's some detail on the pH study...

A pH study is performed by passing a thin plastic catheter a sixteenth of an inch in diameter through one nostril, down the back of the throat, and into the esophagus. Proper placement is confirmed by a chest x-ray. The tip of the catheter contains a sensor that senses acid. The sensor is positioned in the esophagus so that it is just above the lower esophageal sphincter, a specialized area of esophageal muscle that lies at the junction of the esophagus and stomach and prevents acid from refluxing back up into the esophagus. In this position the sensor records each reflux of acid. The catheter protruding from the nose is connected to a recorder that registers each reflux of acid.

The patient is sent home with the catheter and recorder in place and returns the next day to have them removed. During the 24 hours that the catheter is in place, the patient goes about their usual activities. Meals, periods of sleep and symptoms are recorded by pushing buttons on the recorder. After the catheter is removed, the recorder is attached to a computer so that the data it has gathered can be downloaded into the computer where it is analyzed.

Not looking forward to having another tube pushed through Taylor's nose, but I am looking forward to getting one step closer to being able to see the surgeon.

Back on the homefront, Taylor had a home visit from Shar's supervisor at Pace and Taylor was in a performing mood. JoAnn was really pleased with the strides Taylor has made with her head control, it keeps getting better. We put her in a hands and knees crawling position, straddling her over a stool, and with her arm splints on. Need to start getting her to bear weight on her arms. She handled the position as only Supergirl can, without a complaint.

Good reaching Taylor!

Supergirl hard at work

Long Day!

Dr. Bello came to see us this morning after the 24 hour mark. He said that all the events I pressed the button for were all seizures. To my surprise he said that overall the EEG was improved. HUH??? I'm still somewhat surprised by this because the number of clinical seizures she's having now is higher than ever. He said though that she no longer has the continuous slow spike and wave pattern. Having said that he said her EEG is still very abnormal, is still reflective of Lennox-Gastaut syndrome, but overall it is improved. So, we'll definitely take the good news! He's not going to add any other new meds, stay on the diet, stay on the l-dopa, stay on the phenobarbitol and introduce the IVIG. We should know within a few months if it is effective in reducing the seizures. Keeping our fingers crossed.

The techs came next do disconnect the EEG and take all the probes off. That was another unpleasant part for Taylor. When they finished with her she looked like she had been in a fight. Poor sweetheart. Her head is a mess, I think the probes were digging into her head. The marks they left are like bad burn marks all over her head. They cleaned up all the glue and with that they were gone. Leaving a frightening looking Taylor behind.

Not to worry, I fixed her hair up and she looks as delicious as ever. This is my new FAVOURITE picture...

Then came the waiting game and after a while I was wondering if we'd get home today. Finally at 4pm the nurse came and hooked up Taylor's first IVIG treatment, to run over 4 hours.

Heart skip a beat...after pleading urgency yesterday over our desperate need to see GI and fast track the g-tube surgery, Dr. Bello made it happen!!!! They came tonight while the IVIG was running! What happened next was a LOT of questions on Taylor's feeds, how often she refluxes, how much there is, when it happens, how it smells, if it upsets her, how her bowel movements are. Lots of questions. Dr. Wrobel came back after reviewing everything. They do not think she needs a fundoplication, but they suggest we do a pH probe which is a 24-hour procedure for measuring the reflux of acid from the stomach into the esophagus. If the probe results in low acidity, then we can take fundoplication OFF the table and move on to meeting with the surgeon. They're going to call us tomorrow with a date for the pH study.

IVIG finished with no reactions, and we were discharged at 8 o'clock tonight. I don't know who was happier to go home, me or Taylor?!

Hat Head

We were expected at the hospital by 8am for Taylor's EEG to be hooked up. Normally that would mean waking her up because she usually sleeps until about 9. But today she was up early, so I was glad that I didn't have to wake her. I gave her a quick diaper change before I had my shower so that once I was ready I could just grab her and go. When it was time for the 'grab and go' I discovered that she had pulled her NG tube out. C.R.A.P. I was going to hook up her feed after the technician got all the probes on her head, so I grabbed all her tube change supplies and shoved them in my purse. Off we went.

She had a really rough time with the applying of the probes. Normally with the hour long EEG's, they attach them with paste, put little squares of gauze over each one, then wrap her head. But with the 24 hour EEG, they need to make sure that the probes don't come off with her moving around. So first they paste them on the same way. Then they saturate the gauze squares with liquid glue, put them over top each probe and use blowing air to glue them firmly against her head. She did not like that part at all. The tech went as fast as she could, but not fast enough as far as Taylor was concerned. Once that torture was over-with and they wrapped her head and put the little 'hat' on, I got to subject her to further torture by putting a new NG tube in. What fun! I then got her fed and she passed out, slept soundly like a baby for two and a half hours!! Thank goodness because we were stuck in Neuro for a long time before her bed on the unit was ready. I must say she looks pretty adorable with the little hat they put on, but she's going to have some pretty mean hat head when it comes off!!!

I think it was about 1pm by the time they moved us upstairs. They went through the instructions with me on keeping her in the crib so that she stayed within the video range, pressing the button every time I witnessed a seizure, and that I could not leave the room. Normally when we're in hospital, it's okay to leave her to get coffee, have a meal, run an errand. But when you're in for seizure monitoring, they are very strict and someone needs to be in the room with her at all times.

I did get out for a couple short breaks while a volunteer sat with her. Otherwise I was in the room the whole time. I haven't really sat and stared solely at her for long periods of time pressing a button for every seizure so I was quite surprised that I was witnessing around 50 seizures an hour. Multiply that by the number of hours in a day and that is an INSANE amount of seizures. More than ever.

She was very irritated being confined to the crib all day. I don't blame her! I was irritated being confined to the room, all she had was a crib. By bedtime she was completely fed up and I could not get her to settle. So much crying. It's very hard to take. She finally crashed out, with a very red face, at around 11pm.

Goodnight world, we're exhausted!

Early Valentine's...

Taylor's going into the hospital tomorrow morning, Valentine's Day, for an overnight EEG. So we celebrated a little early. With a dinner of love. I made a cake. Marissa made Valentine's. We had heart-y napkins and a tablecloth from the Dollar Store. Chocolates...of course. We invited Granny & Grandad over. They took Marissa home with them as I'll be in the hospital with Taylor for 24 hours. It's been FOREVER since I cooked dinner for anyone, my entertaining is a thing of the past. But it was nice.

Happy Love Day!
xoxo

PRICELESS - Marissa's face after she licked the spoon from the melted UNsweetened chocolate that had not yet been made into SWEET chocolate icing for the cake.

My main accomplishment of the day!

Marissa sporting her handmade Valentine's crown!

Place setting at our dinner of love

Marissa kissing her little sister and giving her the Valentine that she made

WOW...

...that was fast! There's something to be said about advocating for your daughter to a pediatrician who really listens. He must have sent quite the referral to Surgery Clinic yesterday, because they called me THIS MORNING to book an appointment with the surgeon! Thank you Dr. Palmer!!!!

Unfortunately she told me that the surgeon will want to know what GI has to say about a fundoplication before he sees us. So she gave me her number and told me that as soon as we have a date for our GI appointment, call her and she will get us in to see the surgeon right away. Then surgery would be booked 2-6 weeks after that.

It's starting to come together! Need to get on GI's case now!

This afternoon while Shar was working with Taylor in her standing frame, a very proud big sister stood on the sidelines with pom poms cheering, "Go Taylor Go!!!" Over and over. It was the cutest thing. My favourite moment of the day, filled me right up.

Nice LOOKING Taylor!

Nice REACHING Taylor!

"Go Taylor Go! Go Taylor Go! Go Taylor Go!"