Sadbh’s update – February 7, 2015

I forgot to mention in yesterdays post that as we were entering the butterfly exhibit at the Pacific Science Center we had to pass through two sets of doors that were separated by a room so as not to allow any butterflies to escape. While going through this transition we were given a run down on the do’s and don’ts by an official. He explained that we were to look where we stepped as not to crush any of the butterflies that happened to be resting on the floor and not to touch any with our hands as this could harm the butterflies. He then demonstrated what to do if a butterfly landed on our head by throwing a huge fluffy toy butterfly on to Sadbh’s head. It caught Katie and I off guard and any chance of keeping Sadbh away from potential germs were out the window.

He then encouraged Sadbh to slowly shake the toy butterfly off causing it to land on the floor. I’m certain that Sadbh was probably one of numerous kids that exercised this “butterfly removal” technique today and it’s highly unlikely that this toy butterfly ever gets cleaned.

Anyway, Sadbh slept great but woke up at six rearing to go. She hung out with Harjinder until seven and was up the stairs like a flash and into bed for a cuddle with Cillian.

Harjinder hung out downstairs until half past seven when Katie signed her out.

We had a good start to the day and since it was time for her monthly trach change she was very excited. Earlier in the week she had picked out a new toy. She picked the doll Rapunzel from one of her favorite movies, Tangled, and she could not stop looking at the doll in it’s packaging all morning.

Occasionally, Sadbh would act up and both of us would knock heads. It was very trying for a couple of hours. In the end we all had a good talk and the rest of the day was great.

Ali-Baba and Kirk came by and Sadbh was so happy to see them. After a few snuggles it was time for a bath and then trach care and trach change. Sadbh was very enthusiastic, as she could not wait to get her new doll.

Everything went well and as soon as Sadbh was dressed she got to play with her new doll. Unfortunately the doll’s dress was covered in glitter and since glitter can be very dangerous for Sadbh’s trach I had to remove the dress and wash it to remove any loose glitter.

The rest of Sadbh’s day was fun and this evening she got to watch the movie Tangled with her new doll, Rapunzel. She was so excited to show Rapunzel the movie.

By bedtime she was exhausted and ready to hit the sack.

New photos.

Photos from February 7 2012.

Photos from February 7 2013.

Photos from February 7 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 6, 2015

Sadbh woke up at six for a few minutes and then fell back to sleep until quarter past seven. She was in a great mood when she saw Mommy and could not wait to get up and going.

The weather was still terrible so Katie and I decided to bring Sadbh to the Pacific Science Center so she could learn and have some fun.

The Pacific Science Center is a wonderful place for kids but it is also a Petri dish full of germs. Hopefully Sadbh did not pick up any colds or the likes.

She had a blast and enjoyed herself. She got to see a cross section of a toilet and how it flushes and for some reason she kept flushing non-stop.

There was a dinosaur exhibit that fascinated her, a wonderful butterfly room with countless varieties of butterflies and many other interesting displays.

She did not want to leave and had to flush the toilet another few times before finally leaving.

We were all tired by the time we got home but Sadbh seemed to have a lot of energy on reserve. It’s amazing how that girl can keep going despite the need for sleep.

New photos.

Photos from February 6 2012.

Photos from February 6 2013.

Photos from February 6 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 5, 2015

According to Jirapa, Sadbh had a great night sleep and woke up around six for a few minutes. She fell back to sleep and did not wake until eight. She was in a great mood and asked if I was sitting with her since Jirapa left. She is so used to having someone sitting in the room with her that she now fears sleeping in the room alone.

She definitely woke up on the right side of the bed this morning but later in the morning her mood changed and it was on and off all day.

Sadbh’s day started off full of smiles and cuddles. She could not wait to try on the new dress that we got her yesterday and she even did her best not to spill any food on it while eating breakfast.

Later in the morning we headed off to see Ali-Baba and Kirk for lunch. As soon as the car was loaded up I received a call confirming a doctors appointment for Cillian for next week. Sadbh had one of her “Frozen” toys that plays the theme song. She kept playing it over and over and despite being asked by both Katie and I she would not stop playing it. At one point as I was trying to talk on the phone I pleaded with her to stop and she just gave me a defiant stare and kept pressing the button for the music to play. It was extremely irritating and she came very close to having the toy thrown out the window.

Sadbh was delighted to see Ali-Baba and Kirk and was full of stories as we ate lunch. I had to take care of a few things at home so I left the gang with Ali-Baba and headed off. Sadbh was thrilled and she spent the following couple of hours having fun.

Knowing that Sadbh might be tired when heading home I was armed with a movie to keep her entertained. This worked out well and Sadbh was less annoying for the long trip home.

The rest of the evening was a battle and Sadbh took turns on both Katie and me.

We were fortunate to get trach care done without incident and as soon as we finished up we got Sadbh ready for bed. Katie and Sadbh played Lego for a while and thankfully she was out like a light in record time.

New photos.

Photos from February 5 2012.

Photos from February 5 2013.

Photos from February 5 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 4, 2015

Sadbh woke up bright and early and on the wrong side of the bed. When I told her that she woke up on the wrong side of the bed she was amused and was trying to figure out how the only side of the bed that she gets out of could be the wrong side. One side of her bed is up against the wall.

She was desperate to get upstairs but I managed to convince her to stay with me and have breakfast. This worked well and she was very excited when Mommy and Cillian joined us a short time later.

Sadbh was on and off all day and despite all my best efforts I was the target of most of her aggression. She would always make up for being difficult by giving me a hug and a kiss while saying sorry, but by the end of the day I was exhausted.

She napped again this afternoon and our hopes of going for a long walk afterwards were cancelled due to a big rainstorm that rolled in.

It was a nightmare getting her to sleep again tonight and it took some serious effort on both Katie and my parts in convincing her to finally go to sleep. 
She was still wide awake when Jirapa arrived.

I hope that tomorrow she will wake up on the right side of the bed.

New photos.

Photos from February 4 2012.

Photos from February 4 2013.

Photos from February 4 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 3, 2015

Sadbh woke up early after a good night sleep and both she and Mommy got busy making pancakes for breakfast.

Since Sadbh and I had a very difficult day yesterday we made an agreement to do our best to get along today.  There were a couple of near misses but all in all we had a great day.

The weather was fairly unpleasant so after trach care we headed out for a spin.

Lately, Cillian has been participating in trach care.  Since his schedule is all over the place we usually strap him to either Katie or me and manage trach care that way. I suppose you could say it's a family affair.

It was after lunch and Sadbh was very tired and was showing signs of crankiness. Thankful she fell asleep and when she awoke an hour and a half later she was in an excellent mood. Unfortunately, this extended nap backfired when it came to bedtime and Sadbh was wide-awake when Jirapa arrived at half past nine.

I made the most of the time cutting a month’s supply of Polymem for her trach while I sat next to her so it was not a complete loss of time.

Before bedtime Sadbh and I had a fun game of hide and seek, even Cillian joined in although he did give away my hiding position a number of times with his cooing and squeaking.

New photos.

Photos from February 3 2012.

Photos from February 3 2013.

Photos from February 3 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 2, 2015

Sadbh had a much better night and woke up not long after seven.

We had Sadbh’s cranial sacral appointment first thing so it was all systems go.

Her appointment went well and Dr. Cavanaugh was able to relieve the tightness along her ribcage caused by the extra work she has to perform to breathe.

We also had an appointment for Cillian and Sadbh was very well behaved while we waited for Dr. Cavanaugh to work his magic on Cillian.

Once home Sadbh had a bath and then it was time for trach care. She loves her baths and if she got her way she would spend hours in there.

The sun eventually came out so we decided to get out for a walk and to get some fresh air. Before we left Sadbh got to chat with Nana and Granddad and she told them all about the great things that she was baking in her toy oven. They were about to go to sleep so Sadbh told them to have a good night and to dream about her.

It was so good to get out of the house especially since Sadbh was starting to become difficult.

Shortly after leaving the house she got very upset because we forgot to bring her snacks to eat and she only calmed down after Katie removed her trach cap and agreed to check with Sadbh to see if she wants snacks on her next trip.

Some days are better than others but today she and I knocked heads over and over.

It can be extremely challenging and by the end of the day both of us are exhausted.

New photos.

Photos from February 2 2012.

Photos from February 2 2013.

Photos from February 2 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – February 1, 2015

Sadbh woke up at two this morning and was desperate to come up stairs. Harjinder managed to get her back to sleep and she slept soundly until shortly after six. They both hung out chatting until I came down at quarter past seven.

I disconnected Sadbh from all her equipment and after seeing Harjinder off we headed up to Mommy and Cillian for a sleep in. Unfortunately our sleep in did not last long as Sadbh was itching to get the day going.

Sadbh had a busy morning and by lunchtime she was looking very tired.

Katie and I managed trach care and as soon as we were done we loaded up the car and headed out to run a few errands.

As expected, Sadbh fell asleep fairly quickly allowing her to get the rest she deserved.

Since Sadbh has so much medical equipment that needs to accompany her wherever she goes we decided to go to REI to try and find a suitable backpack that will allow us to consolidate everything into one bag.

The bags that we have used all along have served their purposes but now that we have Cillian’s baby stuff to carry we figured it would be a good time to find a new solution.

It took looking through a lot of different backpacks but with the help of one very dedicated sales woman we finally found a great bag. The bag needs a large compartment at the top to hold and protect Sadbh’s suction machine and at least four other compartments to hold her emergency trachs, two oxygen bottles, an Ambu bag and the rest of her trach supplies.

We landed on a camera bag that fits everything perfectly allowing us to consolidate from two bags to one.

After that we headed over to the bike section so Sadbh could check out a potential birthday present. She has a couple of trikes at home but never really enjoys riding them. Today she found a bike just her size with stabilizers on the back and she took off around the store. She was a natural but she has to work on watching where she is going.

We arrived home just in time to watch the Super Bowl. Sadbh was very excited for the Seahawks and wanted them to win.

It was a great game with a disappointing outcome and until she went to sleep she kept asking why did the Seahawks not win.

New photos.

Photos from February 1 2012.

Photos from February 1 2013.

Photos from February 1 2014.

All the best,

Wayne, Katie, Sadbh and Cillian