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!"

Random Bits

Last Friday Francis went to the PUF info session at Pace. With our last few questions answered, we have decided that when Taylor transitions to PUF programming in September, she will do so at Pace. We already know the centre, like what they have to offer, and we think it's the best program for her. Feeling really good about our choice and glad that this piece is now done. Something to check off the 'to do' list, which always seems to be miles long!

Taylor's been working so hard with Shar on her home program. Here's a few pics to show off her efforts and the wee little things that make us cheer, "yay for Taylor"...

You're supposed to let us put FOOD in your mouth Taylor!

Deep in concentration focusing on the triangle

Nice holding your head Taylor!

Tray play with her piano to encourage reaching and touching

Mesmerized by her jingle bells

Standing so tall...she fell asleep like this believe it or not!

Went to see the Pediatrician today. Haven't been yet for her 2 year check up, but mainly went to discuss the urgency of this g-tube surgery. Now that we've made the decision to go ahead, it can't happen fast enough. Sitting around waiting for GI to call us with an appointment is not time well spent. Can't this be fast tracked? She needs this. She can't keep going through the traumatic NG changes. Mommy can't either. Dr. Palmer was very supportive. He's going to put in a referral to Surgery Clinic, but he does feel that it's still important for GI to evaluate whether or not there is a need for a fundoplication. This is where the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and the stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. If a fundoplication is needed, it should be done at the same time as the g-tube surgery. So this is why the GI evaluation is a critical piece. Taylor doesn't have alot of reflux, but apparently having a g-tube can make reflux worse, and the pediatrician relayed a concern that with developmentally delayed children, there is risk of refluxing in their sleep and aspirating that reflux, and that is very dangerous. Sigh.

Wish it wasn't all so complicated.

Daddy Love

It's no secret that Marissa is Daddy's Girl. But Taylor is sure working her way into that special spot. I've been sneaking photos of their special moments lately. My favourite is when he cuddles her at night and sings to her. Very endearing. Very special. He has a magical way of calming her when she is upset. This afternoon Taylor fell asleep in my arms. I sat down in the big, red, cozy chair-and-a-half and held her for an hour. When it was time for her feed I got up and took her upstairs where Francis was lying down in our room trying to make his headache go away. I got her feed ready and went back to hook it up. I had to snap a pic of them both sound asleep together. These "Daddy Love" moments are too sweet not to share...

Sibling Stuff

The social worker from Home Care came this morning. We talked alot about Marissa and what we can do to help her with her feelings around having a sibling with special needs.

I think Marissa is a little stuck right now. Part of it is just her 4-yr-old attitude and feisty personality, but I think there's more to her defiance and temper than we realize. She is so wonderful with Taylor, she loves her sister so much. She takes something wild out on us though, me in particular. She sees how much time Taylor needs from me, and that Taylor never gets in trouble, and I'm sure there's some hostility in her as a result of everything. I don't think she understands what she's feeling, or how to manage her emotions. When she's good she's golden, I could eat her up with a spoon. But when she's bad, oh she puts me over the edge, and she knows it.

The social worker gave me the names of some counsellors who come to the house and who do play therapy. That sounds interesting for sure, I'm going to look into this more. If it can help Marissa, I'm all for trying.

We talked about a book or a poster or something that has many different faces...a happy face, a sad face, an angry face, etc. And using it to have Marissa show us what face she feels like. And then talk to her about it, let her know it's okay to feel sad or angry, or whatever, let her know what actions/reactions are okay and what are not and give her some tools to manage that feeling.

We also talked about how children like having something to look forward to. They will associate a day with an activity. Like she knows that Saturday she goes to gymnastics. So to build on that make a calendar for Marissa with each day of the week with an activity or something special that happens on each day. It will give her a tool where she can keep track of the days of the week and that she has things to look forward to. And to build on that, make special time without Taylor that's just for Mommy & Marissa, so she knows that she's just as as important.

Tools to start using. Counselling to look into. Work to do. Need to take care of my other little girl.

Out & About

Got Taylor's AFO's fitted today. I still think these wee little braces are so cute. I'm sure she doesn't, although she had them on today for about 5 hours and didn't even complain. That's my girl! Crazy to look at them next to her old ones and see just how much she has grown in 10 months!

After we left Braceworks it was off to the hospital again. Taylor's Infant Team appointment was in the sensory room this time. She loves it in there. A dark room with all kinds of different lights is soooo her thing. If we ever win the lottery Taylor, I will so build you the most amazing sensory room. Oh to dream!

Two Choices

We went to the PUF Resource Fair this morning. All the agencies in Calgary who provide PUF were there to provide us with information that we will need to decide where to put Taylor. Because of the severity of her needs, she really needs one-on-one care.

Of all the agencies that were there today, there's really only two options for Taylor that provide one-on-one aide support. Pace, where we are currently in the Family Support Program, or GRIT.

G.R.I.T. (Getting Ready for Inclusion Today), is mainly a home-based program. 2-3 hours a day, 5 days a week. They provide an aide to work one-on-one with your child in home and/or the community. You can also take advantage of going in to the center where they offer specialized activities such as music therapy and a sensory room. Therapy is once a month on a consult basis. What I like about GRIT is that if your child isn't well enough to attend center-based activities, your aide will still come to the house, and if your child is hospitalized for a length of time, the aide will still go to see them.

Pace is a combination program, 3 hours a day, 5 days a week. Two days are in the center and three days are at home, all with your one-on-one aide. Sensory room, music therapy once a week, swimming once a month at Emily Follensbee (where Taylor will go to school), a field trip once a month. There is a 1.5 hour direct therapy session once a month with the therapists where the parents are included. In addition, two weeks out of the month the therapists lead the class, and the other two weeks they are in the classroom circulating from child to child. What I also like with Pace is that you do not have to be there while your aide is with your child. So there's some freedom there to not always have to be home (or at the center) during those times.

Pace is having their own private info session next week, so we'll go to that before making our decision. But I think we are leaning towards staying with Pace.

I'll wrap up this post with a few cute pics of Taylor on the ball this week. She had just finished her bath and was ready to go down for a nap, so she was too pooped to work very hard...

One Tiny Hole...So Much Grief

We keep Taylor's tube coiled with tape and pin it to the shoulder of her clothes so that she can't get ahold of it and pull it out.

I went to change her diaper tonight and get her in her jammies before her last feed was hooked up. When I went to pin the tape to her sleeper, I missed by a millimetre and poked a hole in the tube. Right away liquid was coming out. DAMMIT.

We have to pull it out and put in a new tube. Fabulous. We have to traumatize Taylor before bed in the middle of the week. It's bad enough that we have to change it every weekend, but to have to subject her to another tube change mid week is just plain awful.

I'm so mad at myself, and I feel terrible for Taylor. Mommy is so sorry. This one was particularly awful. She was upset for such a long time after, seizing and sobbing. Breaking my heart.

This is what my sweet angel has to go through everytime. Torture. I hate what this NG tube has done to my baby. It's not fair.

Decisions

Mom & Bryan have the girls for the weekend. Two sleep-ins, a quiet house, time to do whatever we want and just be the two of us. It's a beautiful break. Thank you both so much.

It also gives us time to think. Dr. Bello put in a referral to GI for us to have a g-tube consult. But the more we think about it, we have made the decision that it's what we need to do. We can't keep subjecting Taylor to the trauma she goes through every week when we change her tube.

This NG tube has changed her. I see fear in her face. She has become so ultra sensitive of anything to do with her face, not just the tube changes. Washing her face, brushing her teeth, putting chapstick on, wiping her nose, even trying to kiss her on the cheek or wipe her tears nearly puts her over the edge. I hate what this NG tube has taken from her. And I so desperately hope that getting the G-tube brings my little girl back. And takes her fear away.

It's funny what a matter of months will do. Back in October when the NG tube went in I was devastated. The thought of needing a G-tube wasn't even an option in my mind, there was just no way. But now, after 3 months of no progress being made with oral feeds, and seeing the trauma Taylor goes through and the fear in her eyes, we are completely at peace with this decision.

The G-tube it is, and it can't come soon enough.

Wee little casts...

It hasn't quite been a year, but Taylor's AFO's (ankle foot orthotics) were just too tight. So off we went to Braceworks today for casting so that they can make her a new pair. She did great, casts were done in no time and we picked out a new pattern of mauve with pretty butterflies!

Rigid AFO's conform to the shape of the calf and foot as one continuous plastic brace. It is used to prevent plantar flexion of the foot and to provide mediolateral ankle stability. Taylor needs the AFO's to provide support when she is weight bearing in the standing frame. In addition, she now needs them to provide a sustained static stretch at the ankle to prevent loss of range of motion due to spasticity-related contractures. The physiotherapist would like to see Taylor wearing them 6 hours every day to prevent progressive loss of range of motion.

Scary Seizures & Information Overload...

It's been a very busy day, head is spinning!

First up was pool group at the hospital. Taylor was pretty mellow in the pool this time, she didn't do her usual amount of kicking. Poor girl was exhausted from a rough night, I think she just wanted to be held in the nice warm water and not have to work at all. So I let her do just that and she enjoyed herself. Mom and I were out one day when I had respite, and we popped into Swimco. We were flipping through the kids suits just for fun and came across it, then we noticed the logo and Supergirl name on it. Mom ripped it out of my hands and said, "I'm buying it!". Seriously, there couldn't be a more perfect bathing suit out there for my Supergirl...thank you Mom!!

Up next was Neurology. We had a long talk about Taylor's lack of progress in the oral feeding department, and the prospect of a g-tube surgery. These weekly NG tube changes are just so traumatic for little Taylor. Dr. Bello is very supportive of the g-tube. He has put in a referral to GI for us.

Taylor had a really bad night last night. She woke up screaming at 3am. When I went into her room she really scared me. At one point I thought I was going to have to call 911. She was screaming so hard and wouldn't settle. She was having seizure after seizure after seizure. One after another, and they were so intense. Because they were so close together and her jumps were so much more intense than usual, it almost looked like a convulsive seizure. Haven't seen her do that before, and don't want to see it again thank you very much. She seemed so scared. After a few minutes they started to slow down, but she was having such a hard time settling. I brought her into our room and put her in between Francis and I. I don't know if it was knowing we were there holding her, or just time, but she slowly started to settle and fell back to sleep.

Dr. Bello thinks this could be the start of things changing seizure wise for Taylor. We also told him that the seizures are back up way too high. They've been increasing over the last couple of months, back up to hundreds a day. They had gone down to less than 100 a day after we started the Ketogenic Diet. But they have crept right back up. Dr. Bello says "the honeymoon's over". Having a hundred seizures a day sure isn't a honeymoon in my books, but it was a hell of a lot better than what it is now. So, is the diet even working any more? Is the Phenobarbitol working? Perhaps not, but the combination could be keeping convulsive seizures at bay for now.

He wants to do an overnight EEG in the next few weeks to get as much information as possible on the patterns of Taylor's seizure activity, what happens over longer periods of sleep, etc. We haven't had one of these before, had loads of EEG's, but they've all been around an hour. For this long term monitoring she gets hooked up to all the electrodes, then we are admitted to a room on the unit that has video monitoring. So they can see the data from the recording together with the video footage of Taylor. I'm quite anxious for these results and what they'll show.

Treatment wise, Dr. Bello said we have a few options right now...

• a vigorous trial of drugs over the next 6-12 months, all of which have varying nasty side effects
• Felbamate - a drug that he relates to chemo therapy, which has shown fatal liver toxicity in adults
• Intravenous immunoglobulins (IVIG) - a blood product, a pool of antibodies, he referred to it as the a-bomb treatment to boost immune response

How do we decide, we're far from professionals here, no experience. Although, a vigorous trial of drugs over the next year is NOT high on my list. We asked Dr. Bello, if Taylor was his daughter, what would he do? He said he would try the IVIG first. There's no serious side effects, and we would know it's effectiveness relatively soon.

IVIG is a blood product. It is a sterile solution of concentrated antibodies extracted from healthy donors and administered into a vein. We all have antibodies that fight infection. There is growing evidence that children with intractable epilepsy, can have an immune response that attacks their own brain, which can cause the intractable epilepsy. It's a 4 hour treatment via IV in the hospital every 3-4 weeks, for at least 6 months. And thank goodness we live where we do and this treatment is covered, because this ranges between $5-10K per dose. YIKES.

Back in the summer Dr. Bello had started the process of filing the appropriate paperwork to the government to get approval for genetic testing. Approval has come through, so they will draw the bloodwork from Taylor when she's admitted for the EEG. Anxious to see if this testing is going to reveal anything.

Whew, that was a LONG neuro appointment, Dr. Bello was in with us for an hour and a half. He is wonderful. Very compassionate, encourages as many questions as we can possibly think of, gives us as much info as we want, never makes us feel rushed. I am so grateful that he's following our little girl.

Tonight we headed back to the hospital for a PUF info session. Program Unit Funding (PUF) is funding that is available through Alberta Learning for children with moderate-to-severe needs in the areas of speech-language, fine motor, and/or gross motor skills. Your child would receive additional supports (e.g. aide time, therapy intervention) in his/her areas of need in an Early Childhood Services (ECS) program. The funding is available for a maximum of 3 years. Your child's therapy team will formally assess your child in all three areas (speech-language, fine motor, gross motor). The scores received on the formal assessment will help determine whether your child will quality for PUF. Scores must typically be in the severe range in order to qualify. Test scores are submitted to Alberta Learning who makes this final decision based on the information provided. For Taylor, this is just a formality, she is severe in all areas and will qualify, no question. I am so incredibly grateful that we have this available to help Taylor, that we live where we do. But I would give anything for her to NOT qualify, because that would mean she was a typically developing child and not one with 'severe' special needs.

There are a variety of agencies who provide PUF across Calgary: centre-based programs, home-based programs, combination programs. In a week's time there is a PUF resource fair, all the agencies will be there to talk to and help us in making our decision of which program to put Taylor in.

Never a dull moment...sooooo much on the horizon to think about. I'll lighten things up to end this post with a picture of Marissa, in her scrubs, assisting with a tube feed. SO cute!

Home Program

Big crowd for our Infant Team appointment at the hospital today! Myself and Taylor of course, Mom, Dad & Marny, Taylor's new aide Sharlene, and our three therapists.

Shar started last week as Taylor's new Developmental Aide. She'll come to our Infant Team appointments, like Lana did, to take direction from the therapists for her day-to-day work with Taylor.

I had asked them to put together a Home Program for Shar to follow with Taylor at home. She's just getting to know Taylor and I thought it would be helpful, for both Shar and Taylor, to have a regular routine to get into. I think it will be great!

They worked through the list with us:

• Work on establishing Cause & Effect
• Place a stimulating object (light source, fan, musical toy, vibrating object) next to Taylor
• Turn the object on
• Teach Taylor to attend to object with a physical cue
• hand-over-hand
• show Taylor where to look (physically turn her head)
• show Taylor where to reach or touch (lead her hand to stimulating source)
• Also provide a verbal cue
• say 'look', 'touch', 'listen'
• Multiple attempts, try second and third time of...
• e.g. turn fan on, use hand-over-hand cue of turning Taylor's head towards fan, then using a verbal cue of "look"
• Make sure to put objects in a spot near Taylor that will encourage her to easily turn her head towards, reach, etc. (to prevent her from arching her body)
• Taylor engaging in an object may mean Taylor becoming still, waving her hands or arms, reaching, focusing, turning head toward object, rolling over, making a sound, etc.
• Hamstring Stretch
• Heelcord Stretch
• Long Sitting - back supported, knees extended
• Sitting - between your legs, encourage her to prop arms on your legs
• Tummy - prop on arms/hands, hold head up
• Rolling - consecutively across floor, both directions
• Belly Crawl - help her to shift her arms forward and push herself forward with her thigh or knee, then other side
• Lying to Sitting - help her through the steps moving from side lying, prop on forearm, showing her to push up with arm
• Grasp and Hold - encourage holding various objects, different textures
• Hands and Knees - putting her in a crawling position using a support roll to rock on, can use arm splints to teach her to bear weight through her arms
• Modified Hands and Knees - making above hands and knees position easier by elevating her arms on a cushion or step to decrease the effects of gravity, aim to have hands open, forearm prop is ok initially
• Exercise Ball - push against it while sitting in lap, lying over ball on tummy arms propped and holding head up, when on tummy support her while bringing her back until feet on floor in standing and bearing weight through legs
• Little Room - encourage reach/grasp/touch
• Standing Frame - work up to an hour a day, utilize sensory board, encourage holding toys
• Vocalization - copy sounds she makes to encourage her to interact/imitate
• Describe activities - talk to Taylor in short, simple phrases to describe motor activities (up, down, side to side)

The other thing we talked much about was Taylor's feeding, or shall I say LACK of feeding. This is getting more and more frustrating. The time commitment of trying to get Taylor to take some formula by bottle at each feeding time is HUGE. And most of the time it ends up being dumped into the bag and going through the tube, because she will not drink. To take some of the pressure off over the holidays, we gave up the bottle attempts and just fed her 100% by the NG tube. Now I'm feeling guilty wondering if we're worse off because of it. Taylor will just not drink. The OT thinks that taking a break over Christmas is not enough for Taylor to lose the ability to feed, and I shouldn't feel like I made a mistake in doing that. They suggest continuing to offer the bottle at each feeding time but if she's giving strong refusal cues, to listen to her and not force it, because we don't want to make it a negative experience. Still having a really hard time digesting the whole G-tube option (feeding tube surgically implanted from the abdomen directly into the stomach), but we did discuss the benefits and the fact that it doesn't need to be permanent, and that even if we go that route, we can still work on oral feeding. Up until now I didn't even want to consider this, but after 3 months of absolutely no progress with oral feeding, I think we need to start giving it some thought.

I managed to get this shot of Taylor's beautiful, tubeless face in between tube changes last week. What a beauty she is. My little ray of sunshine.

Happy New Year!

Goodbye to 2010, HELLO to 2011. May you deliver good things!

Taylor had it pretty rough last year...three hospitalizations totaling 53 days in the hospital, not including appointments. So, as far as we're concerned, things can only get better! Onward and upward, and here's to seeing what Supergirl has in store for this year.