Sadbh’s update – March 31, 2015

Sadbh woke up early this morning and for some reason or other she took a dislike to her nurse, Jirapa.

She wanted Mommy to come down so I stayed upstairs with Cillian while Katie took over from the nurse.

Other than that Sadbh had a fantastic day. She was in a very playful mood all day and I spent a lot of the morning and afternoon playing with her.

At one point she got to talk with Granddad and her cousin Lilly back in Cork.

In the afternoon she was starting to get tired so after trach care we read a few books in the hope that she might take a quick nap. This was not to be but she kept herself busy for the rest of the day playing with her Lego.

By bedtime she was completely wiped out but she still had enough energy to draw a bunch of pictures and wanted to hang them on her walls before going to bed. She even wrote a story and made it into a book. Only Sadbh knows how to read it but thankfully she is happy to do so.

New photos.

Photos from March 31 2012.

Photos from March 31 2013.

Photos from March 31 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 30, 2015

Sadbh woke up very upset at five this morning and she could not understand why her toy dogs were not in her bed. Katie snuggled up with her and eventually she calmed down and went back to sleep, for an hour.

Katie and I had an appointment in Greenlake later in the morning so it was full speed ahead as soon as we got up. Sadbh helped out by getting ready without any fuss and while we were in our meeting she was as quiet as a mouse.

Once finished we headed to the zoo for a treat for Sadbh. She was delighted and was eager to go for a ride on the carousel. I went with her to make sure that she had no issues with her trach, etc but I noticed that Sadbh was quiet and very serious during the ride. I tried to find out what was going on with her and it was only later when Katie asked did she reveal that the horse was talking to her.

After the carousel ride Sadbh and I had a game of chase around the zoo. It was so much fun and eventually both of us were out of breath.

We spent the next hour or so in the Pacific NW section of the zoo and Sadbh got very excited when she saw the bears snoozing in their enclosure.

By the time we got home Sadbh was getting tired. We tried to get trach care out of the way as quickly as possible but this took a lot longer than expected since Cillian was fussy and crying.

Sadbh wanted to go to bed early tonight but was happy snuggled up to Mommy. Katie sang lullabies to the two kids for half an hour or so and they both really enjoyed it.

When Sadbh finally went to bed she was out in no time. Jirapa is working tonight so Sadbh is back downstairs in her other bedroom.

New photos.

Photos from March 30 2012.

Photos from March 30 2013.

Photos from March 30 2014.

All the best,

Wayne, Katie, Sadbh and Cillian  

Sadbh’s update – March 29, 2015

I checked in on Sadbh every hour and thankfully she slept like a log.

She woke up shortly after seven because Cillian was crying and once she realized the time she insisted on going down to the basement to wake up her cousins.

Hayato went back to sleep but Kaito was happy to get up and play with Sadbh.

The two boys were heading back to Portland this morning with their dad so Sadbh did not waste any time playing with them both. She had a wonderful time and things only got better when Ali-Baba and Kirk stopped by for a quick visit.

Sadbh was sad to see her cousins leave and by now she was getting tired.

Regardless she refused to take a nap and spent the rest of the day playing with her toys, reading books and cuddling with her baby brother.

We managed trach care late in the day and after dinner we watched a movie in the basement.

Sadbh was completely exhausted by the time the movie ended and headed off to bed without any fuss.

New photos.

Photos from March 29 2012.

Photos from March 29 2013.

Photos from March 29 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 28, 2015

It was a long night as I had to check on Sadbh every hour or so to drain her humidifier hose and to make sure that she was not getting tangled up in her hoses and cords. She slept like a log but woke up just before six.

Despite having to constantly get up to check on Sadbh through the night it definitely beats having a nurse in the house.

Sadbh had her horse riding class today so on the way we stopped off to visit our friends, Hailey, Martin and their three kids. Sadbh and Aoife got busy playing with all of Aoife’s toys and it was nearly impossible to drag Sadbh away when it came time to leave.

Our next stop was the horse ranch and Sadbh was excited. She could not wait to get up on her horse but she first has to groom and clean Jamie’s hoofs.

Soon she was trotting around the paddock and having a wonderful time.

The class took a little over an hour and by the time Sadbh was done she was very hungry, so much so that I think she contemplated eating Jamie’s carrot when it came time for feeding.

Sadbh had a snack in the car on the way home and as soon as she was done she fell asleep. She was in a deep sleep for half an hour or so and woke up surprised to see Mommy sitting next to her in the car. When Sadbh sleeps in the car her head flops forward and this causes her trach cap to dig into her chin and chest. It looks terribly uncomfortable so Katie jumped in back between the two kids to keep Sadbh’s head back.

Once home it was time for trach care and as soon as we finished up her two cousins, Hayato and Kaito came by with their dad, Yuki and Ali-Baba and Kirk. Her cousins are staying the night and Sadbh could not be more excited.

They had a great evening playing and after dinner Sadbh wanted to show them her favorite new movie, Song of the Sea.

At times when Sadbh was afraid she would cuddle up with Hayato for comfort. It was very cute.

When the movie ended it was time to go to bed and after saying good night to everyone she headed off to bed and was sleep in no time.

New photos.

Photos from March 28 2012.

Photos from March 28 2013.

Photos from March 28 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 27, 2015

It was an early start for Sadbh this morning as she woke up when Jirapa tried to suction her around half past six. Sadbh was not pleased and insisted on Mommy coming down to suction her.

Katie came down and suctioned Sadbh’s trach, which made Sadbh very happy, and by now she was ready for the nurse to leave.

Unfortunately, Sadbh’s happy mood was short lived. She threw a huge hissy fit when she did not get her way and Katie had to work long and hard to get her back into a good mood.

We had an appointment later in the morning and this set us back quite a bit. We still made our appointment but it was a very stressful morning and by the time we arrived we were a little bit frazzled.

Sadbh got to hang out with Kaito and Ali-Baba for a couple of hours and she had a wonderful time. It was great to see her having so much fun with her cousin and when it came time to leave she was hungry and tired.

We stopped off for lunch on the way home and Sadbh entertained everyone in the restaurant with her singing.

Later in the day we managed trach care and since it was a nice day we headed out for a walk through the neighborhood and ended off stopping for ice cream. Sadbh made friends with a bunch of construction workers who were sitting at the next table they could not get enough of her.

Once home it was time to bring all her equipment up to her upstairs bedroom. It took almost an hour to get everything set up and while I was doing it I realized that the nursing agency had not confirmed that they had cancelled the weekend nursing coverage. I quickly called their after hours number and after explaining our situation they called me back to confirm that the coverage was cancelled. Too bad our case manager did not respond to my e-mail yesterday to let us know.

Bedtime was easy tonight as Sadbh was tired and excited to be sleeping upstairs.

It’s going to be a long night without a night nurse but we know Sadbh will get a much better night sleep, even if we don’t.

New photos.

Photos from March 27 2012.

Photos from March 27 2013.

Photos from March 27 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 26, 2015

Sadbh had a suction free night and woke up in an excellent mood.

We planned the first weekly family meeting during breakfast today and Sadbh was very excited about it. She has been quite difficult to deal with lately and has been throwing quite a few temper tantrums numerous times each day. It’s all age appropriate behavior and is probably spurned on with the arrival of her baby brother.

Today’s meeting started off with each of us thanking each other for something that made us happy and after that we got down to discussing the new rules in the house. Sadbh was engaged and very receptive to these new rules. That said, she had to be reminded a number of times throughout the day and will probably need to be reminded a bunch more times in the coming days and weeks.

The rest of the morning was spent painting a couple of bird houses that Sadbh has and once she was done with that it was time to break out a new pack of animal stamps. She had a brilliant time, despite the huge mess.

In the afternoon I received a text from my friend, Sean, to see if we wanted to join him and his two girls, Aoife and Eimear, for kids happy hour at the central cinema. It sounded like a great idea so we got trach care out of the way, fed Sadbh dinner and headed down to meet the gang.

Sadbh was glued to the screen as she watched all the old school cartoons but she did get to meet Sean’s two girls and at the end she got to dance on the stage with all the other kids.

She was completely exhausted by the time we arrived home and was ready for bed. She fell asleep with her trach cap on and soon her heart rate was in the upper 80’s to low 90’s.

Since our weekend nurse, Mary, handed in her notice with this weekend being her last one with Sadbh we decided to cancel nursing coverage for the weekend and we will move Sadbh and all her equipment upstairs tomorrow. Sadbh is over the moon with this idea and cannot wait to move up to her bedroom.

New photos.

Photos from March 26 2012.

Photos from March 26 2013.

Photos from March 26 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 25, 2015

Sadbh needed to be suctioned once during the night and woke up quite happy after a good night sleep.

Her cousin, Kaito, was due to come by with Ali-Baba for a visit and Sadbh could not wait.

They had so much fun together painting hard-boiled eggs for Easter, reading books and playing.

By the time Kaito left Sadbh was completely tired. She seriously needed to take a nap but it seems that she does not want to miss out on any fun. Despite being tired she kept herself occupied and managed to stay awake until bedtime.

Katie and I managed trach care shortly after six this evening and once finished it was time for dinner. Sadbh had a healthy appetite and devoured her dinner.

Going to bed was easy and she was fast asleep by quarter to nine.

New photos.

Photos from March 25 2012.

Photos from March 25 2013.

Photos from March 25 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 24, 2015

Sadbh woke up in a great mood and was delighted to see Mommy first thing. She came running up the stairs to cuddle up with Cillian and so far it was a great start to the day.

Sadbh had a wonderful day and she got to Skype with Nana and Granddad in the morning and Sophia in the early afternoon.

Katie and I got trach care out of the way early in the afternoon and as soon as we finished Sadbh spent the rest of the afternoon playing. She had so much energy but she managed to fall asleep in my arms next to Cillian.

In the evening we took a nice long walk through the neighborhood in the hope of burning off some energy.

She still had a lot of energy by the time we got home so we spent half an hour or so playing to tire her out.

It worked and she was fast asleep by nine.

We found out today that our new weekend nurse, Mary, has taken a job elsewhere and that this weekend will be her last one with us. We are extremely disappointed since they guaranteed us that she would be with us for the long haul.  We are not sure we are going to look for a replacement as it takes so much time and effort to find and train new nurses. We are also thinking that we might inform the agency that we would rather that Mary did not come this weekend.

New photos.

Photos from March 24 2012.

Photos from March 24 2013.

Photos from March 24 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 23, 2015

Sadbh slept great but woke up in a foul mood this morning. I had taken over from Mary at half past six and hung out in Sadbh’s room until she woke up almost an hour later. She only wanted her Mommy and it took her an hour to calm down. During that time I had to constantly suction her trach as she was clogging up her trach due to being so upset. It was very stressful for both of us but when she finally calmed down things got a lot easier.

During breakfast she got to Skype with Mommy, Cillian and her cousin, Lulu. This cheered her up immensely.

The rest of the day was much better although there were times when she would get upset and demanded that she wanted Mommy to come home straight away.

We spent most of the day reading some of Sadbh’s favorite books and shortly before we Skyped with my parents back home. Sadbh was full of chat and even showed off her Irish dancing moves.

Kirk came by in the early afternoon and thankfully Sadbh was in a much better mood.

Sadbh was beside herself with delight when she heard the car pulling into the drive a short time later. She could not wait for Mommy and Cillian to get out of the car and was extra happy to see Ali-Baba and her cousin Kaito with them.

For the next hour or so Sadbh got to play with Ali-Baba and Kaito and of course Mommy and Cillian both received so many hugs and kisses.

The rest of the evening was great and we got trach care out of the way just before dinner.

Bedtime was easy tonight as Sadbh was very tired. Hopefully she will wake up in a much better mood tomorrow morning.

New photos.

Photos from March 23 2012.

Photos from March 23 2013.

Photos from March 23 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 22, 2015

Sadbh slept well and woke up at seven in a very good mood.

The weather was not good so we decided to stay in and have a lazy day.

We had a fun day playing pirates and Sadbh also got to watch a couple of movies later in the day.

Sadbh Skyped with Mommy and Cillian who are in Portland and despite missing them she was happy to chat and was not sad when it came time to go.

By bedtime she was missing Katie so we Skyped again so she could chat before going to sleep.

I had to suction her trach a few times at bedtime and once I cleared her trach she rolled over and fell asleep immediately.

New photos.

Photos from March 22 2012.

Photos from March 22 2013.

Photos from March 22 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 21, 2015

Sadbh was awake by half past seven and ready for the day to start. She was up the stairs like a shot and could not wait to cuddle up with Cillian.

Katie had planned to visit her sister’s family in Portland but since the logistics of bringing Sadbh would be too much we decided it would be best for Katie to go with Cillian and Ail-Baba only.

Over the past few days we talked with Sadbh to make sure that she was okay with this and initially she was disappointed.

Sadbh and I discussed fun plans for the weekend and when it came time for Katie and Cillian to leave today Sadbh was happy and eager to get the fun started.

With trach care out of the way Sadbh and I waved Katie, Cillian and Ali-Baba off as they headed off to Portland.

Sadbh and I quickly loaded up the car and headed off to the pet store to pick up supplies for Sadbh’s fish, Squirty, and to check out all the other animals in the shop. It was a fun experience for Sadbh as she got to check out all the different fish, puppies, kittens, rats, mice, snakes, lizards and a whole bunch of other interesting creatures. Thankfully she did not want to bring any of them home.

The Ferrari dealership down the street has a F1 racecar on display in the front window and every time we drive past Sadbh gets excited. Today I decided to give her a treat so we stopped by to take a look and a few photos. She was fascinated by the racecar and all the other cars that were for sale in the show room and made a few comments as to how she would like to drive one when she is older.

When we got home we had a quick bite to eat and then headed out for a walk through the neighborhood. Sadbh was in the mood for ice cream so we stopped off along the way to satisfy her needs.

Once home we had dinner and then watched a wonderful Irish movie called Song of the Sea. Sadbh loved it and was fascinated with some of the details behind the scenes.

Sadbh never ceases to amaze in how tuned in she is to the details.

I was worried that she would get upset when it came time for bed as she usually counts on Katie being there to tuck her in and to sit with her as she goes to sleep. Thankfully she was so tiered that she dropped off to sleep quickly and without any fuss.

New photos.

Photos from March 21 2012.

Photos from March 21 2013.

Photos from March 21 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 20, 2015

Sadbh had a good night and woke up just as Jirapa was finishing up her shift.

It was still early so Sadbh joined the rest of us in bed for a snuggle.

Sadbh had a play date with Conor and Aibhin and she could not wait to go see them. The two babies, Cillian and Odran slept the entire time despite all the noise from the three kids.

The kids had a lot of fun and Sadbh was in no rush to leave when it came time to head home.

A friend of mine, Marcus, came by for lunch but by now Sadbh was very tired. She showed Marcus her new baby brother and later when Marcus held him Sadbh could not stop giving Cillian kisses.

Later in the evening we managed trach care and for some reason Sadbh had a few breadcrumbs up by her stoma.

After dinner we watched the movie Up and Sadbh really enjoyed it.

Bedtime was easy and Sadbh was asleep fairly quickly.

New photos.

Photos from March 20 2012.

Photos from March 20 2013.

Photos from March 20 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 19, 2015

Sadbh woke up just as I was taking over from Jirapa and she immediately wanted Katie. I was able to cheer her up quickly and soon we were having a fun morning.

After breakfast Sadbh sat next to Cillian and read him her storybook about her first few months spent in the hospital after she was born. It was very cute to watch her and it was also very touching since they both had very different experiences.

We had a fun morning playing and reading books and after lunch we headed up to Capitol Hill for a walk. Sadbh wanted to ride in her stroller the entire way there and back. Cillian was happy riding along in the baby bjorn and I think he slept for most of the trip.

Sadbh was excited all day as her friend Dylan was coming by for dinner with his parents and she could not wait to get home so she could be ready for his arrival.

Once home we got trach care out of the way and afterwards Sadbh waited as patiently as she could for her friend to arrive.

Sadbh and Dylan really need to spend more time together. They always have a wonderful time and they get along so well.

Tonight was no exception and at one point Katie caught Sadbh stealing a sneaky kiss from Dylan.

Bedtime was much later than usual and Sadbh was completely wiped out. She was out like a light and it was just in time as Jirapa arrived to start her shift not long after.

New photos.

Photos from March 19 2012.

Photos from March 19 2013.

Photos from March 19 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 18, 2015

Sadbh slept well but needed to be suctioned a couple of times throughout the night.

Katie took over from Jirapa and Sadbh was very happy to see her.

Sadbh was in a very good mood all day and despite having a relaxing day she had a lot of fun.

She got to Skype with Nana and Granddad back in Cork and she managed to convince Granddad to wear his novelty wig again. This made her day.

We managed trach care in the early evening and then headed out for dinner. Sadbh was very well behaved and for the first time in a long time we were able to enjoy dining with the two kids.

Sadbh was completely wiped out by bedtime and was fast asleep in no time.

New photos.

Photos from March 18 2012.

Photos from March 18 2013.

Photos from March 18 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 17, 2015

Sadbh slept great and woke up shortly before seven. As soon as she got an opportunity she broke free from her nurse and headed up stairs to join the rest of us.

Thankfully she was in a good mood today and she was very excited to celebrate St. Patrick’s Day.

We got trach care out of the way early today and afterwards we headed off to Ali-Baba and Kirk’s to enjoy an Irish dancing show in their community center. Sadbh was so impressed with all the Irish dancers and declared that she wanted to start dancing lessons so she could perform on stage.
Sadbh spent the rest of the day doing the jig much to the delight of everyone.

Our next stop was to Clodagh and Cormac’s for dinner. Suzie’s parents are in town for a quick visit so it was good to catch up.

The kids had fun hanging out and playing and when it came time to go home Sadbh was very tired.

Bedtime was quick and easy tonight and Sadbh was fast asleep in seconds.

New photos.

Photos from March 17 2012.

Photos from March 17 2013.

Photos from March 17 2014.

Happy St. Patrick’s Day,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 16, 2015

According to Sadbh’s nurse, Mary, she did not have a great sleep and was fairly restless. I took over shortly after six and Sadbh slept soundly until seven. She was not happy to see me and demanded Mommy. Since Cillian had both Katie and me up for a lot of the night I refused Sadbh’s request and worked really hard to get her into a better mood. After almost half on hour it worked and Sadbh was ready to get up and have breakfast.

Katie had heard all the commotion and stayed upstairs with Cillian while I worked on Sadbh. Once she was in a better mood both Mommy and Cillian came down to join us for breakfast.

Her day improved slightly but she was never far from getting upset. Both Katie and I worked hard to keep her happy and it paid off despite being extremely exhausting.

After lunch we headed out for a spin in the car in the hopes to get Sadbh to take a nap. She was just dozing off when we pulled into Volunteer Park. As soon as she realized where we were she woke up and wanted to go for a run around the park.

This turned out to be a great idea and Sadbh had so much fun. She pretended that I was the big bad wolf and she was Red Riding Hood as I chased her through the wooded part of the park.

By the time we were done she was tired but she was still full of beans.

On the way home we got a call from Neil who wanted to stop by for a visit. Sadbh was delighted and declared that she “loves Neil”.

Once home we got Sadbh ready for trach care and with Neil’s help as he looked after Cillian we were able to get trach care done without any issue.

We did miss a call from Children’s Hospital and ended up playing phone tag with them for the next hour as we tried to schedule a night for her upcoming sleep study. Hopefully we will be able to get a hold of them in the morning.

The rest of the evening was spent playing with Cillian and Sadbh even called my sister in New Zealand to wish her a happy birthday.

Before we knew what time it was getting late and Sadbh had to go to bed.

She passed out in no time at all and even fell asleep with her trach cap on. Her heart rate dropped into a nice relaxed state and her respiratory rate was also normal despite having her trach cap on.

We also received a new invoice from her medical supply company, Apria for supplies shipped to us last November.

Last March we started to receive invoices for her medical supplies even though Sadbh is covered by three medical insurance policies. It took me countless calls every month from March until December to get these invoices corrected. It had been a clerical issue within Apria’s billing department that caused the problem and they were responsible for all the charges that they were trying to get me to pay. Turns out that they did not correct the problem so after being on hold for over an hour today I was finally able to get through to a supervisor within the billing department and get the problem resolved, for now.

New photos.

Photos from March 16 2012.

Photos from March 16 2013.

Photos from March 16 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 15, 2015

Sadbh slept great and did not wake until eight. Katie had taken over from Mary and when Sadbh finally woke up she was slightly disappointed that I wasn’t there to greet her as she had a plan to frighten me when I walked into the room.

Regardless, she was in a much better mood and she was delighted to see Katie.

The weather was awful today but this did not dampen Sadbh’s mood whatsoever.

It was Clodagh’s birthday party today and Sadbh was all excited to be going. She was busy all morning making her a birthday card and she even wrapped up one of her own toy horses to give to her as a gift.

Clodagh was having a Peter Pan themed party, which involved all the kids acting out the different characters.

Katie and I had decided to let our guard down so Sadbh could join in on the fun and we were glad that we did as Sadbh had a wonderful time. She was grinning from ear to ear and it was fantastic to see her interacting with all the other kids.

By the time we left Sadbh was completely exhausted but she was still in a great mood.

Once home it was time for a bath and trach care.

The rest of the evening was spent hanging out with Cillian and when it came time for bed she was out in seconds.

New photos.

Photos from March 15 2012.

Photos from March 15 2013.

Photos from March 15 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 14, 2015

I took over from Mary shortly after seven and when I approached Sadbh’s room the door was slammed in my face by Sadbh who did not want anything to do with me.

This was a good indication as to how the rest of the day was going to be and to be completely honest it was extremely exhausting for both Katie and I.

Sadbh did get to go to her horse riding class, which she really enjoyed. She kept asking the instructor to go faster and she wanted the horse to jump.

We had hoped that she might nap in the car along the way but this did not happen. It was really unfortunate that she did not nap as she thought it was hilarious to kick the back of Katie’s seat the whole way home which was about 35 minutes of a drive.

We got trach care out of the way as quickly as possible and for the rest of the evening we walked on eggshells in the hope that we would not unleash the wrath of sweet little Sadbh.

Bedtime could not come soon enough and when it did Katie was able to get her tucked into bed and off to sleep really quickly.

New photos.

Photos from March 14 2012.

Photos from March 14 2013.

Photos from March 14 2014.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 13, 2015

Sadbh slept well but was not happy to see me when I took over from Jirapa at half past seven. She really wanted her Mommy and after Katie came down we were able to calm her down. I was then able to have a good chat with her and the rest of the day was a lot more pleasant.

I had to go to Costco today to get passport photos for Cillian. Sadbh came along for the ride and the guy behind the counter thought that she was so cute that he took a photo of her and printed those photos as well. She was delighted with herself.

We had an appointment with the pulmonary team at Children’s hospital to discuss an upcoming sleep study appointment. It was a good opportunity for the doctor to get to know Sadbh’s history and understand the importance of this sleep study for us. Unfortunately they are booked three months out but they put us on a cancellation list in the hopes of getting us in sooner.

The objective of a sleep study is to monitor Sadbh’s vital signs while her trach is capped and to see if there is an opportunity to decannulate her. It is unlikely that we are going to be able to decannulate but it will give us some important data to better understand how well she sleeps with and without her trach capped.

Once home it was time for a quick bath and trach care. Due to my travels and Sadbh being sick earlier in the week we had postponed trach change until Sadbh was doing better.

We decided to get it done today and when Sadbh realized that she was going to receive two new gifts as an incentive she was very excited.

It went really well, although Cillian started to cry uncontrollably just as we were about to remove her old trach.

With a new trach and in her pajamas it was time for dinner and then a movie.

Katie had dinner plans with some friends and Sadbh was happy to be hanging out with Cillian and me for the evening.

Things did not go so well when the movie ended though. Sadbh was obviously very tired after such a busy day and refused get ready for bed. It took a good forty-five minutes to get her ready and by the time she got into bed she only wanted Mommy. It took another half hour for her to finally fall asleep.

New photos.

Photos from March 13 2012.

Photos from March 13 2013.

Photos from March 13 2014.

All the best,

Wayne, Katie, Sadbh and Cillian