Sadbh’s update – August 13th 2014

Sadbh slept with the non-modified PMV last night for a few hours but it caused her to be quite restless. Helen switched the PMV out for a trach guard to allow Sadbh to sleep soundly and she slept great until eight when I woke her up.

She was in a very good mood and could not wait to get up.

We had a busy day planned for Sophia’s final day. Thankfully Sadbh was helpful and after breakfast we headed off to the Museum of Flight. Sadbh was thrilled to see all the planes and especially excited to see the rockets and the training space shuttle. The Museum of Flight is spectacular but after a while Sadbh got very tired and extremely cranky. She tried to nap but was way too giddy.

Since there was so much to see and do we kept on and Sadbh was happy to climb onboard a concord, JFK’s air force one jet and a couple of other cool airplanes.

Sadbh took a quick nap in the car but was like a zombie as soon when we arrived home. Sophia and I were able to manage trach care but Sadbh would not nap afterwards.

Thankfully she had some quiet time and this seemed to help out. Her mood eventually turned around and she was very happy and playful for the rest of the evening.

Sophia brought us out to dinner and Sadbh was excited for some pizza and ice cream. She could not wait and ate her dinner very quickly in anticipation of receiving “pink” ice cream, which she teased me with.

We had a fun evening and made it home just in time to get Sadbh to bed before Helen arrived.

New photos.

Photos from August 13 2011.

Photos from August 13 2012.

Photos from August 13 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 12th 2014

Sadbh woke up bright and early and was having a full on chat with Helen by the time we came down to take over.

She was delighted to see Mommy and when it came time for Helen to leave she was shouting good byes down the street, no doubt waking up half the neighborhood.

It was a busy start to the day since we had an 8am appointment at Children’s Hospital. Sadbh was excited to go and she was thinking hard of questions to ask Dr. Inglis.

Traffic was not great but we made it just in time. Our friend Ken, whom I worked with years ago, checked us in and was very impressed to see how much Sadbh had grown in the past three months. She’s now forty-and-a-half inches and weighed in at thirty-three-and-a-half pounds.

After discussing our recent steps forward and steps backward with capping Sadbh’s trach at night while she slept, Dr. Inglis and his assistant Pam went over our surgical options. He feels that she would tolerate decannulation in her current state but it would be stressful for all of us and we would likely have to deal with sleep apnea, strider and overall she might not thrive due to the increase of energy to sustain.

We also discussed the pros and cons of laser cordotomy and after a lengthy chat we decided to schedule this procedure. Dr. Inglis informed us that since he’s booked out for quite some time that this would afford us the time to seriously think about it and it would allow us to cancel if we decided that it was not the right procedure for Sadbh.

In a nutshell, this procedure involves cutting a tiny notch in the vocal cords, away from where the voice is vocalized, which would open the cords enough to allow Sadbh to breathe without the use of a trach.

We would keep the trach in for a couple of months and after two sleep studies at Children’s they would determine if she could be decannulated or not.

When we checked with the scheduling department we were offered an appointment for next Monday due to a cancellation. We decided to go for it and booked her in. It was all very exciting and scary but we are encouraged by Dr. Inglis as he and his team has always support us and has never put any pressure on us to do anything we were not ready to do.

Sadbh was wired to the moon for the rest of the day and after trach care with Sophia she seemed ready to take a nap. This was not the case and she was bouncing off the walls for the rest of the day.

By dinnertime I was ready to put her up for adoption and when it came time for bed she was out before her head hit the pillow.

New photos.

Photos from August 12 2011.

Photos from August 12 2012.

Photos from August 12 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 11th 2014

Sadbh woke up a little earlier than usual after a nice relaxing night sleep.

She was eager to get the day started and was quick to find her new dolls.

It was an extremely hot day and Sadbh was the only one in the house with any energy. She had a wonderful day and even made trach care very easy for Sophia and I.

Before bedtime she got to play outside with our next-door neighbor, Charlie. They had a great time and by the time they were done Sadbh was completely pooped.

Sadbh has her appointment with Dr. Inglis early in the morning and we are very eager to learn more details on surgical options to help resolve her vocal cord issue.

New photos.

Photos from August 11 2011.

Photos from August 11 2012.

Photos from August 11 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 10th 2014

Sadbh slept great and was thrilled to see Mommy sitting next to her when she woke up this morning.

Ali-Baba came by later in the morning to hang out and after some playtime they all headed to the mall to go shopping.

Shortly after Sadbh returned home her friend Aidan and his parents came by for a play date. Sadbh was thrilled to have Aidan to play with and they both got busy playing in her little house at the end of the garden.

Later on Ali-Baba helped Mommy with trach care and as soon as they were done it was time for the fun to continue.

Sadbh had a wonderful evening and both kids really enjoyed themselves.

By bedtime Sadbh was completely wiped out and was fast asleep moments after her head hit the pillow.

We learned last night that Danielle, Sadbh’s nurse, is switching from four nights to three nights. Thankfully she will cover this next week but we have to find another nurse that will possibly pick up the extra shift, although I think this will be very difficult.

New photos.

Photos from August 10 2011.

Photos from August 10 2012.

Photos from August 10 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 9th 2014

I took over from Danielle just before six and Sadbh had slept well and managed to wear her PMV for a while. Unfortunately, Danielle did not document the amount of time with the PMV so we don’t know exactly how long she wore it for and if she was able to wear her trach cap also.

Sadbh slept in until her usual time of half past seven and she was in an excellent mood when she woke. She could not wait to get out of bed and practically ripped her equipment off in doing so.

Mommy arrived on the scene just as we finished unhooking all of Sadbh equipment and Sadbh was delighted to see her wearing her glasses and her hair in braids.

The Saturday ritual was just about to kick off and it started with Sadbh asking to make pancakes.

All in all Sadbh had a wonderful day. We had a busy time taking care of projects around the house and Sophia helped keep Sadbh entertained throughout the day.

We got set up for Sadbh’s monthly trach change in the early afternoon and after prepping Sadbh over the last few days she was on board to help out. Poppy, Katie’s dad, had sent Sadbh two dolls, one of Princess Anna and the other of Princess Elsa from Sadbh’s favorite show, Frozen. We held onto these two dolls to use as bargaining chips for trach change today and it worked well. Sadbh resisted for a moment when she saw the new trach in my hand but after chatting with each of us she soon opened up her neck and allowed me to insert the new trach as soon as Katie removed the old one.

Sadbh enjoyed her evening and she even got to watch Frozen out on the back deck.

When it finally came time to go to bed she was out as soon as her head hit the pillow.

New photos.

Photos from August 9 2011.

Photos from August 9 2012.

Photos from August 9 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 8th 2014

Sadbh had a good night and slept until half past seven. She was well rested and ready to start the day.

Our friends, Kim and Finn, had arrived last night and Sadbh was shy at first when she met them this morning. It did not take long before Sadbh warmed up, in fact, she took quite a shine to young Finn.

Caity, Sadbh’s nurse supervisor, came by this morning to recertify Sadbh. Sadbh was extremely entertaining as she read the book that she received from our friend Helen a couple of years ago. I was able to capture most of the story on video and she had us all laughing throughout.

After breakfast Finn showed Sadbh the slingshot he got in Nicaragua and she had a brilliant time firing arrows in the back garden.

When it came time for Kim and Finn to leave Sadbh was very sad and refused to give them hugs. Thankfully they will be back next week and she will have plenty of time to spend playing with Finn.

Sophia and I got trach care out of the way early in the day and Sadbh and I spent the rest of the day playing and having fun.

After Mommy arrived home we headed off to Café Presse, per Sadbh’s request, for something to eat. Sadbh was quick to order bread and fries and was lucky enough to get her order served very quickly.

The rest of the evening was spent playing at home and by bedtime she was out for the count.

On Wednesday evening Katie followed up with Dr. Inglis’s assistant to see if we could meet sooner than our scheduled appointment set for October. Yesterday we received a response from Pam asking us to set up a meeting for next Tuesday.

New photos.

Photos from August 8 2011.

Photos from August 8 2012.

Photos from August 8 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 7th 2014

Sadbh slept well last night but did not do as well with the PMV. She slept in until after 8 and woke up in a great mood.

We had a busy morning and after breakfast headed to Costco. Sadbh actually enjoys Costco and at one point spotted a bunch of stuffed monkeys that she wanted to check out. Unfortunately to get to the monkeys we would have had to pass by a bunch of princess dresses and since Sadbh already has enough princess dresses we had to distract her and bypass the monkeys entirely.

Once home we got trach care out of the way and then it was time for nap. Since Sadbh does not do naps the second option is quite time. Sadbh does not like quiet time either so the next couple of hours were a bit of a struggle.

Later in the afternoon we both headed out into the garden and spent the next few hours playing ball. Sadbh and I had a wonderful time and despite not taking a nap I was surprised with the amount of energy she had.

Later in the evening she started to show signs of crankiness. Despite this she was still in a fairly good mood.

Bedtime was easy again as she was very tired. By the time she was changed into her pajamas and teeth brushed she was done and ready for sleep.

Sadbh is starting to really dislike having nurses watching over her at night. Lately she’s been telling us how she does not like having them.

This along with our constant battles with insurance companies, medical supply companies and so on we have been seriously considering surgical options to resolve Sadbh’s vocal cord issue.

Earlier in the week we e-mailed Dr. Inglis to let him know about this and we are waiting for a response to discuss next steps.

New photos.

Photos from August 7 2011.

Photos from August 7 2012.

Photos from August 7 2013.

All the best,