Sadbh’s update – February 28th 2013

Sadbh was a little restless tonight but she slept great for the most part.  Larissa tried out the cap a couple of times; the first time Sadbh only lasted a few minutes as she started to desat.  However, later on she did great and lasted for ten minutes.

By 6:10 Sadbh was wide-awake and in a great mood. She was a little reluctant to eat breakfast at first but by the time she was done she had consumed a good amount of food.

After seeing Katie off to work, Sadbh got down to some serious playtime with Granddad.

It was a very wet day so Sadbh was housebound all day. This did not matter as she had plenty of toys to play with and she was very busy all morning.

My mum enjoys working on tapestries as a hobby and this morning Sadbh grabbed her tapestry and glasses and insisted on sitting in Nana’s chair. She looked adorable and also looked like she knew what she was doing.

Granddad and Nana managed trach care and thankfully Sadbh slept through the whole thing. She slept for two hours and when she woke up she was eager for the fun to continue.

I arrived home to a very happy and energetic little girl. She immediately insisted on removing my shirt and after a few minutes of protest I ended up complying. As soon as she was satisfied it was time to chase each other around the house laughing. She really knows how to have a fun time.

When Katie arrived home we all bundled into the car and headed out for dinner. Unfortunately, as we were getting Sadbh out of the car I got her arm stuck in between her car seat and the seat of the car. She was very upset but thankfully she was not hurt.

Her mood improved immensely in the restaurant and she was even more excited when a plate of chips arrived. She loves chips and got stuck in as quickly as she could.

The rest of the evening was fun but she was very tired when it came time for bed.

Thanks to my parents Sadbh tolerated her trach cap for over five hours combined.  Another record day!

New photos.

Photos from February 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 27th 2013

It was a very good night for Sadbh and a very long boring night for Larissa. Sadbh slept great and did not budge all night.

By 6am she was awake and ready for her day. Her form was a little off but she was still in a good mood.

Unfortunately, Caity had called in sick but Sadbh still had plenty of people to hang out and play with for the day.

Granddad and Nana worked hard to get Sadbh to wear her trach cap and at one point she managed it for almost two hours in one go. That was quite the achievement.

Ali-Baba stopped by to help out and she got to have a lot of fun with Sadbh.

Sadbh was having her nappy changed at one point and had all three grandparents singing “wheels on the bus” to her. She was delighted and all of a sudden she shouted “iPad! iPad”. Granddad explained that he did not know where it was and then Sadbh replied with “upstairs, upstairs, get it”.

Her three grandparents were in hysterics laughing and thankfully they did not fulfill her demands.

Sadbh’s nap was much later than usual and after Granddad and Nana took care of her trach cleaning she slept for an hour and a half.

She woke up much happier and had a nice big appetite.

She wore her cap again a few times throughout the evening and did really well tolerating it.  All in all, she managed the cap for three and a half hours today.  This is an all time record!

By the time bedtime rolled around, Sadbh was exhausted. She had a fun evening playing with Katie but she started to hit a wall around 7:30.

It took a while to get her dressed and ready for bed but she soon dropped off into a good sleep.

New photos.

Photos from February 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 26th 2013

Sadbh had a wonderful sleep and woke up at 6 just as Larissa finished her shift.

She had a fun morning playing with Katie and later she insisted on Katie having a shower so she could catch up on her favorite show on her iPad, Kipper the Dog.

When it came time for Katie to head off to work, Sadbh and Granddad followed her outside so she could wave good-bye.

It was a nice morning so Sadbh and Granddad hung around outside to check out several dogs that were being walked by their owners.

Kara worked for a couple of hours today to help out with trach care. Nana held Sadbh’s trach again today while Granddad cleaned and everything went well.

She slept for almost two hours and woke up in a very good mood.

Sadbh had an appointment with Dr. Inglis today to see if there were any improvements with her vocal cords.

Sadbh was very shy when Dr. Inglis, his assistant and their intern arrived in the room.  She kept hiding behind Katie and myself, however she did impress everyone by wearing her cap for 50 minutes.

Taking into account that Sadbh’s bout with pneumonia and an ear infection had set her back a bit, Dr. Inglis still felt that she was making progress and explained that if we can get her to tolerate capping her trach all day and night that there is a possibility that she can be decannulated in the summer.

This will give us time to practice wearing the cap in the hope that she is ready to have it removed completely. This is also a better time of year to decannulate as there is a lower risk of catching colds and flu’s.

Dr. Inglis also feels that Sadbh has not yet reached her plateau as it relates to her vocal cords healing on their own and feels confident that we will continue to see improvements over time.

He did discuss some medical options, however, he recommended that we keep the trach in for the next few months with the intent of removing it in a few months.

This was much better news than what we had expected however we are now focused on capping her trach for as long as possible to prepare Sadbh for a potential trach free summer.

An hour after Sadbh went to sleep we capped her trach to see how she would manage. She got very restless but her heart rate stayed low and her blood oxygen was 100%. Unfortunately she started to get very uncomfortable after 9 minutes and even reached to pull the cap off. As soon as I popped it off she fell right back to sleep so we hooked up her humidifier collar and zipped up her sleep sack.

New photos.

Photos from February 26 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 25th 2013

Granddad took over from Julie at 5:30 allowing Katie to get some extra rest. Sadbh had slept great through the night and woke up bright eyed and bushy tailed at 6:15. She was very happy lying in her bed and did not get up for another 20 minutes.

She was in a great mood and was very happy hanging out with Granddad as he prepared her breakfast. She had a healthy appetite and ended up having a nice big breakfast.

As soon as she was done it was time for the fun and games to start.

Kara worked for a few hours today and Sadbh was delighted to see her. She even showed Kara how well she could wear her cap.

It was a nice day so they all headed out for a walk through the neighborhood.

By the time Sadbh arrived home she was getting very tired and ready for her nap.

Granddad and Nana both did trach care while Kara supervised. It all went well and Sadbh slept for two hours and forty-five minutes.

When she finally woke up she was very surprised to see her friend Conor and his little baby sister Aibhín. Sadbh was still very sleepy and could not believe her eyes. It did not take long before Sadbh and Conor were playing and dancing to the “wheels on the bus” song that they both love so much.

Just before he left, poor Conor tripped and bit his tongue. Sadbh was very concerned about him. 

When it came time for Conor and Aibhín to leave Sadbh was very sad to see them go.

The rest of her evening was spent playing with Katie and I and when it came time for bed she was quite tired. It took almost an hour to get her to sleep but she finally dropped off into a deep slumber.

Almost an hour after Sadbh fell asleep we capped her trach to see how she would handle it. She got very restless, however her vitals stayed strong and she did great for 10 minutes before we decided to take it off.

This was a very positive step forward and we need to keep doing this on a regular basis.

New photos.

Photos from February 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 24th 2013

Sadbh slept like a log and woke up just as Julie’s shift was ending at 6. After seeing Julie off Sadbh joined us upstairs in bed, she was in a great mood and ready to play.

Sadbh had a great morning and had so much energy. She was very active all morning and did not seem to want to slow down.

It was a pleasant day so Katie and I brought Sadbh out for a walk around the neighborhood to tire her out.

She was very happy to be out and enjoyed walking through our neighborhood pea-patch.

We arrived home with a tired little girl but she wanted to wear her cap so I placed it on her trach as she soaked in her bath. She was very happy playing with her little bath toys and had no problem with the cap whatsoever.

Trach care went very well and my mother held Sadbh’s trach as I cleaned. She did great and hopefully will get more practice in during the week.

Sadbh slept for two and a half hours and woke up very relaxed and in a great mood.

Nana and Granddad looked after Sadbh for the next couple of hours and she had a wonderful time playing with them in the basement.

The rest of her evening was spent playing with Katie and I and we all had a great time. She was very clingy to me all day however she would not let me wear anything but a t-shirt. I have a feeling that she is totally winding me up, but she was determined to make sure that whenever I put a top on she had me taking it off seconds later.

Sadbh was exhausted when it came time for bed. Things got a little bit ugly as she did the rounds for good night kisses. As I took a photo of Sadbh kissing Nana, Nana took the binky out of Sadbh’s mouth and Sadbh gave her a slap. It took us all by surprise as this is not a typical reaction for her.

She eventually said sorry as we explained why it was wrong to slap anyone.  Just before she went to sleep she said “Sadbh sorry” once again.

Hopefully this is not going to become a habit.

New photos.

Photos from February 24 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 23rd 2013

Sadbh slept great and woke up very early. She was wide awake by 5 and when I came down to take over from Julie at 6, she was very happy sitting in Julie’s lap reading.

After a quick cuddle with Katie, it was back downstairs to start a fun packed day. She had both of us trying on all her hats and gloves and then parading around the house.

Throughout the last couple of weeks Sadbh keeps asking me to take my hoodie off. This morning she asked me to take my jumper off and even when I put a cardigan on it too had to come off. I have no idea why but she insists on me wearing nothing more than a t-shirt.

Katie and I had a very busy morning taking care of errands so Granddad and Nana helped out by looking after Sadbh.

She was in a fantastic mood and really enjoyed all the attention from each of us throughout the morning.

She started to get tried just before noon so Katie gave her a bath while Granddad prepared everything for trach care.

Sadbh was asleep very quickly and after she was bundled up in her swaddle it was time to start trach care. Nana has helped support us with bathing and getting Sadbh ready for trach care almost every day since she’s been here however she has never actually participated in the cleaning or holding of Sadbh’s trach. After a quick crash course today, Nana held Sadbh’s trach while I cleaned. She was extremely nervous and you could tell that she was very stressed out, however she did a great job and it seemed like she had done it before.

Sadbh slept on for almost an hour and woke up in a great mood. After lunch and a little bit of playtime we all bundled into the car and headed off over to West Seattle for a spin. We ended up over in Lincoln Park.

It turned out to be an amazing day and despite the cloud cover the sun started to poke out from behind the clouds.

Sadbh could not believe her eyes when we arrived on the beach. She loved how the waves lapped up on the stony beach and when Granddad started throwing drift wood back into the water she insisted on having a go herself.

She walked a great distance today along the waters edge and every couple of minutes she was thrilled to see yet another dog or two. She even got to see some seals out swimming in the bay.

We walked for a couple of hours and when we arrived back at the car the sun was starting to set. Sadbh was in for a treat. Not only was the sun set a magnificent sight, she also got to see the mood high up in the sky. It was a perfect end to our visit to Lincoln Park.

Despite the early start to the day and the long walk, Sadbh still had a lot of energy to burn. Her evening was spent having so much fun and she was in a wonderful mood the entire time.

Bedtime was very easy this evening, however her oximeter alarm started to go off while indicating that the sensor was bad. Despite her alarm going off and the disruption of having her sensor being replaced with a new one, Sadbh dropped off to sleep without any problems. As we placed her into her cot she woke up and gave me the baby sign for “I love you”. It was the perfect ending to a perfect day.

New photos.

Photos from February 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 22nd 2013

Sadbh woke up shortly after midnight and popped her head over the rail of her cot to check out who was working. As soon as she saw Julie, she smiled and laid down to sleep. Julie rubbed Sadbh’s back as she fell back to sleep and as soon as she sat back down Sadbh popped her head back up and smiled.

This happened a couple more times before Julie gave in and took Sadbh out of her cot. Sadbh really wanted to hang out for a while so Julie read a few books to keep Sadbh happy. Eventually Julie was able to get Sadbh back to bed and she slept soundly until 6:30.

Her blood oxygen level was quite low all night and Sadbh occasionally dipped into the upper 80’s. By 6 I was starting to get concerned since all her other vital signs were looking good.

I decided to switch out her probe sensor and immediately her blood oxygen level jumped right up to 100%. Too bad I did not think of it sooner, I would have saved myself a lot of stress.

She had a wonderful morning and after breakfast she could not wait to start dancing.

Ali-Baba stopped by to join in on the fun and help with trach care. Sadbh was very happy to see her.

Trach care went well and Sadbh slept for over two hours.

Caity started her shift at 2 and Sadbh was not too happy when she first woke up and found Caity looking after her. She only wanted Granddad but soon warmed up to Caity after she fully woke up.

The rest of her evening was spent playing and dancing around the house. She was thrilled to see Katie arrive home and was soon turning up the volume on the stereo full blast. Thankfully the Ramones was playing and Sadbh was dancing around like crazy.

We all had tickets to see Cirque du Soleil tonight so Caity watched Sadbh until Julie’s shift started at 10. We were worried that Sadbh would not go to bed so easily, however when it came time she asked to be put in her cot and started to drift off to sleep.

Next thing she called out Caity’s name to make sure that she was there and when Caity answered she dropped off into a good sleep.

We arrived home shortly after 11 and Sadbh had just gone back to sleep. Seemingly Sadbh woke up and wanted to play with Julie again. Thankfully she was quite tired so Julie did not have any problems in getting her back to sleep.

New photos.

Photos from February 22 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 21st 2013

Despite having a great night sleep, Sadbh woke up shortly after 5 and was anxious for Katie. She was very happy to see Larissa and after a cuddle with Katie she wanted to show Larissa her school bus and how well she wears her trach cap. She wore it for 15 minutes and impressed both Larissa and Katie.

Sadbh hung out watching her iPad as Katie got ready for work. She had her dog and cat with her and her dog came in handy as she used it to prop up the iPad.

She had a big breakfast and afterwards she headed off with Granddad and Nana for a nice long walk through the neighborhood. As usual she was in her element and really enjoyed being out doors.

She almost fell asleep on the way home so Granddad had to take her out of the stroller to keep her awake.

We did not have a nurse today so I came home to help out with trach care. She was just falling asleep as I arrived and as soon as she was out we got down to business. Everything went well and soon Sadbh was fast asleep in her cot.

Two hours later she was wide-awake and immediately started to call “Gerdie”.

She was ready for lunch and was eager to play.

Later she headed out again for a walk through the neighborhood and up to the Seattle University campus.

I arrived home moments before Sadbh. She was in a fantastic mood and was very energetic throughout the rest of the evening.

Bedtime was a lot easier tonight since Sadbh was so tired.

New photos.

Photos from February 21 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 20th 2013

We have been very fortunate that Sadbh has been sleeping so well lately and last night was no exception. Obviously, it makes for a long night for the nurses. We consider ourselves very lucky to have great night coverage allowing Sadbh to get the consistent rest that she needs while still keeping a close eye on her to make sure that all her equipment is running properly and that she is safe and sound.

After a great night sleep she woke up around 6:15 and was ready for the fun to begin. Sadbh was very happy and she had lots of fun with Katie.

Caity worked today and since it was a dry morning they all headed off for a walk to Nora’s Wood. It was fun to be out and Sadbh enjoyed climbing the rocks and walking along the trails.

When she arrived home it was time for a spot of dancing and Sadbh had a great time getting down to some of her favorite nursery rhymes. After a while she noticed that Nana wasn’t there so she went up to Granddad and said “Nana missing”. Thankfully Granddad knew where Nana was so they could call off the search party.

By 1pm Sadbh was fast asleep and ready for trach care. Everything went well and she slept for three whole hours. She must have been exhausted from such an active morning.

When it came time for bed, Sadbh was tired but would not go to sleep. She only wanted Katie and it was quite the challenge to get her off to sleep.

She wore her cap a couple of times throughout the day today. The first time she tolerated it for 12 minutes and the second time she lasted 25 minutes. We were hoping to cap her trach just after she went to sleep but since it took such an effort to finally get her to sleep tonight we decided against it so as not to wake her up.

We are trying to practice using the cap as much as possible ahead of her ENT appointment next Tuesday, hopefully we will get a chance to do it over the next few nights.

New photos.

Photos from February 20 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – February 19th 2013

Sadbh slept like a log and hardly moved all night. She woke up about twenty minutes after Larissa left and as soon as she was disconnected it was time to head upstairs with Katie.

After breakfast Sadbh got to Skype with Nini in Munich and she was delighted to see her. They chatted for a while and Sadbh loved it when Nini made horse sounds.

When it came time to say good-bye, Sadbh grabbed the iPad and ran around the living room kissing Nini. It was very cute.

Su-Jin worked for a few hours today and Sadbh was so excited when she arrived.

It was a lovely day so they all headed out for a walk. Sadbh got to see a lot of dogs and birds but the highlight was the park that they ended up going to. It was full of cute animal sculptures and Sadbh got a chance to sit on each one. There were elephants, dinosaurs and even deer’s. Sadbh had a lot of fun and did not want to go home.

Eventually it was time for trach care and thankfully everything went well. Sadbh was in a deep sleep and slept on for two hours.

She was very hungry when she woke up and ended up having a big lunch.

Granddad and Nana were loading up Sadbh’s stroller when I arrived home from work and Sadbh was excited to be heading out into the sunshine yet again.

This time they headed towards the Seattle University campus and Sadbh was very happy to be bundled up snug in her stroller.

Sadbh was in an excellent mood when she arrived home as she got to see the moon while it was still bright out. She danced around the house for ages and got even more excited when Katie arrived home.

After dinner she wanted to wear her cap so off to the bathroom she went so she could play with her bath toys in the water. She did very well however we could hear her working harder to breathe.

Things did not work out with Sadbh’s new nanny so we decided to let her go over the weekend. As a result Katie and I are back looking for a nanny to take care of Sadbh.

New photos.

Photos from February 19 2012.

All the best,

Wayne, Katie and Sadbh.  

Sadbh’s update – February 18th 2013

Sadbh had another wonderful night and woke up in a great mood at 6:20. Granddad was watching her on the monitor as he prepared her breakfast and she was very happy playing in her cot. She got very excited as soon as he popped his head in the door and it was the start of a great day.

Sadbh had a huge appetite and immediately got stuck into her breakfast. When her belly was full it was then time for the fun and games to start. Sadbh had a lot of energy and was lucky that Nana and Granddad could keep up.

It was a lovely morning so later on Sadbh, Nana and Granddad went out for a nice walk. Sadbh was very happy to be out and she even came across a few dogs.

Not long after Sadbh arrived home, Ali-Baba and Kirk stopped by to say hi. She was excited to see them. They all headed down to the basement to play with Sadbh’s train set and other toys. Just as Sadbh was showing off her train she heard the door opening and she instantly knew who just arrived home. She was beside herself and kept shouting up for us to come down.

We both received the biggest and tightest hugs from Sadbh as she smiled from ear to ear.

With that we took over playing with Sadbh for the next hour until she was ready for her nap.

She could not keep her eyes open and after a nice bath she was soon fast asleep. Trach care went well and she slept on for almost two hours.

The trach ties have been bothering her for the past few days and we have been finding little scratch marks on her neck.

After Sadbh woke up from her nap it was time for some food and once she was done eating we all bundled into the car and headed off to Fremont for a walk.

We all had a great time and Sadbh got to pose in front of the statue of Lenin, the Fremont Rocket and all the houseboats on the lake. Sadbh was fascinated with everything especially the houseboats.

Just before dinner she was going through some letters that I received recently and she found one for the guild for Children’s hospital. She was studying it intensely and could not put it down. Not sure what caught her attention so strongly, however out of all the letters it was interesting that she found that one.

She had a wonderful evening and went to bed very tired. It was the ended of a great long weekend and Katie and I were so grateful to my parents for taking care of Sadbh and allowing us to take off for the night.

New photos.

Photos from February 18 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – February 17th 2013

Sadbh slept great and woke up at 6 very upset wanting mummy. I tried all sorts of distractions so as to allow Katie to sleep in, however Sadbh was not happy until she was in mummies arms.

As soon as she was calm and happy she wanted her iPad so I was off back downstairs to keep Sadbh content.

Sadbh had a fun morning and things only got better when her two friends Clodagh and Cormac stopped by for a visit. They had a great time playing in the basement and Sadbh was in her element.

It had been almost a month since Sadbh had any interaction with other kids so it was quite the treat for her.

Sadbh got very sad when they started to get ready to leave and she stood there in complete disbelief. She gave everyone a huge hug before they left and it was such a beautiful moment.

It was heart breaking to see her expression and both Katie and I felt sad too since she does not get to interact with kids often.

Naptime was very late and Sadbh fell into a deep sleep very quickly. We were able to manage trach care very easily. Sadbh slept soundly for two hours before waking up happy and hungry.

Katie and I planned a night away so Nana and Granddad looked after Sadbh for the evening. She had a fun evening and they all managed to get out for a walk through the neighborhood.

Bedtime was a little later than usual and Sadbh was fast asleep by 9.

Julie started her shift at 9:30 so Nana and Granddad were able to relax after a long busy day.

New photos.

Photos from February 17 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 16th 2013

Sadbh slept great and was starting to get restless around 5. I took over from Julie at 6 and Sadbh woke up a few minutes later. She still seemed quite tired so I unhooked all her equipment and brought her up to bed in the hope that she would go back to sleep.

She was delighted to see Katie so that put an end to any hope of getting her back to sleep.

Despite the early start to the day, Sadbh had a fun morning and spent it playing with each of us. She had so much energy and showed no signs of slowing down.

She really enjoys playing Doctor and I found that the best medicine that she gives out has to be kisses.

Speaking of kisses, at one point Sadbh came up to me and asked to sit on my lap. She then leaned over and gave me a big kiss on the cheek.

Katie had put her up to it and Sadbh was beaming from ear to ear as she sauntered away.

By 1pm she was starting to get tired so we gave her a nice bath and started to get her ready for her nap. As she soaked in the tub she insisted on including as many of her bath fishes as possible.

Trach care was easy since she was in such a deep sleep. We also changed her trach and thankfully she slept right through the whole thing.

Unfortunately she woke up just as we were putting her into the cot.

Ali-Baba and Kirk stopped by for a visit shortly afterwards and since Sadbh had not seen either of them in over a week she was very shy at first.

She warmed up eventually and was right up playing with Ali-Baba and having a great time.

Katie went out for dinner with Suzie this evening so Sadbh and I stayed in and played with her train set and toys in the basement.

We had a great time and every so often she would derail the train just to put me to work getting everything back on track, so to speak.

Throughout the evening she would insist on me taking my hoodie off. I don’t know if she does not like it or thinks that I’m about to head out, but she did not want me wearing it, so I had no choice but to do what I was told.

After dinner Sadbh started to get upset and started to ask for Katie. Nana and I quickly got her changed into her pajamas and after brushing her teeth she was asleep within a couple of minutes. I’ve never seen her go to sleep so quickly, but after such a fun day and with only a very short nap she must have been exhausted.

New photos.

Photos from February 16 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 15th 2013

Sadbh had yet another wonderful night and woke up shortly after 5. She was in a great mood and was very happy hanging out with Julie.

Katie took over at 5:30 when Julie’s shift ended and Sadbh was delighted to see her.

It was a very busy morning since Sadbh had Granddad, Nana, Kat and Caity all looking after her. Later in the morning she received a visit from the nurse supervisor so it was a very packed house.

Never in our wildest dreams did we think that a baby would come with all these caregivers.

Not long after the morning’s fog lifted, Sadbh and her entourage headed out into the sunshine for a walk around the block. Sadbh was very happy to be out and it must have looked like a strange sight to see so many people fussing over her.

That said, she’s such a lucky little girl to have so many people caring for her.

Trach care was late today, as Sadbh did not go to sleep until close to 1. She had a nice relaxing bath and soon she was fast asleep on her changing table.

Granddad and Caity managed trach care while Kat observed. Everything went well and Sadbh slept on for a total of 3 hours.

When Sadbh finally woke up she was very hungry and ready for a fun evening.

She had so much energy and we had a fantastic time playing around.

Just before bedtime she really wanted to wear her nappy on her head so for the next 20 minutes or so she got to do just that. It was very funny and she even got a huge kick out of it.

New photos.

Photos from February 15 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 14th 2013

Sadbh slept great but occasionally filled the room with not such pleasant odors.

Thankfully baby farts are easier to deal with than adult farts.

She finally woke up just after 6 and was ready for breakfast.

It was a busy morning since she had an appointment with her cranial sacral doctor, Dr. Cavanaugh. It was a very good visit and he could tell that the last treatment was still working to keep her lungs and diaphragm open and clear from obstruction.

He worked the top portion of her body and she seemed to enjoy the treatment.

Kat was feeling much better and started her shift shortly after Sadbh arrived home from her appointment. Sadbh was happy to see and she got busy playing with Kat, Granddad and Nana.

She had a very exiting morning and was ready for her nap at noon. I made it home just as she was dozing off and before long I was managing trach care with Granddad.

Sadbh was in a very deep sleep and this allowed us to get trach care done in 10 minutes. Soon she was tucked into her bed and I was off back to work.

Sadbh slept for almost two hours and woke up in a great mood. After a big lunch it was back to having fun.

She wore her Passy Muir Valve for most of the day and did great with it. She even wore her cap for a little over 20 minutes this evening and showed no sign of breathing difficulty.

Sadbh received a Valentine’s Day card and a balloon of a frog with kiss me written across the front. She was very excited and I did manage to receive a bunch of kisses for my efforts.

Bedtime was a lot easier tonight and Sadbh fell asleep really quickly.

New photos.

Photos from February 14 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 13th 2013

Sadbh had another good night sleep. She woke up for a few minutes and eventually fell back to sleep. By 5:30 she was starting to wake up and became playful once she realized that Larissa and I were there watching her.

She kept going back to sleep, but it seemed that she was only pretending to.

By 5:50 she was ready to get up out of her cot and have breakfast.

Caity was working today however Sadbh’s nanny was still out sick.

Sadbh had a great morning playing with Caity and when it came time for her nap she was very tired.

Trach care went well and Sadbh slept for over two and a half hours.

She’s been complaining lately of pain and usually points to her bum when she’s in discomfort. She was very uncomfortable today so Katie scheduled an appointment to see her pediatrician.

Sadbh was very excited to go visit her doctor and even pretended to be a doctor when it came time to check her vitals. She told Dr. Hathaway that she was Dr. Sadbh and afterwards when it was time to leave she told Dr. Hathaway that she loved her. I suppose she has seen her a lot lately.

Turns out that Sadbh has a yeast infection due to all the antibiotics. It’s easily treated with the right cream so hopefully Sadbh will feel much better very soon.

Sadbh came home in the greatest mood and immediately it was time to play again. She had made a huge mess in the car with her crackers however she did not seem to mind whatsoever.

It was another fun evening and the fun continued after dinner.

When it came time for bed, Sadbh was again very playful so it took a while to get her off to sleep.

New photos.

Photos from February 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 12th 2013

Sadbh slept great and only woke up once during the night. By the time Larissa got to her she had dropped back to sleep.

She slept great and did not wake until just after Larissa left.

After a nice snuggle with mommy it was time for a big breakfast of pancakes.

Sadbh was excited to see Kat when she started work at 8 and immediately they started to play.

Unfortunately, Kat started to feel ill a couple of hours later so Granddad and Nana took over so she could go home to rest up.

Sadbh was sad to see her go, but the fun and games continued.

Since we did not have a nurse, today I received the heads up from my father around noon to head home to help with trach care. Sadbh was already fast asleep and ready to go as soon as I arrived home, so my father and I got down to work. Everything went well and Sadbh slept on for two and a half hours.

She woke up in a great mood and had a good appetite for lunch.

The weather was not great so she was house bound all day. This did not matter as she had plenty of toys to play with and Nana and Granddad kept her well entertained.

When I arrived home from work, Sadbh impressed me by letting me know where she lived. Nana had taught her how to say Seattle and when I asked her where she lived she said so with a big smile. Everyday there is something new and it’s so exciting to be there for it.

I was trying to get caught up on a couple of work e-mails this evening as we were playing in the basement and Sadbh was not having any of it. She found the power button on my computer and kept pressing it until I stopped working. How right she was too as we had so much fun playing together and I almost spoilt it by trying to work.

After playing with her train set she spotted her red wagon in the basement so I had to pull that out so she could ride in it. Next she had to put her lifejacket on and before I knew it both of us were sitting in the wagon singing “row, row, row your boat”.

We both had a fantastic evening.

Sadbh kept asking for her iPad during dinner tonight and she had no interest in eating. I tried my best to bribe her to eat but it was futile.

As soon as she was out of her high chair she was on a mad hunt for the iPad. She got very upset when she couldn’t find it and since I was not about to give in, Nana even started to plead with me to give it to her. Sadbh overheard and turned around with her hands out and a big smile on her face as if to say, “see, you have to give it to me now since your mammy told you to”.

And she was right, so I caved and Sadbh got to play with her iPad for about 20 minutes before bedtime.

She was in a great mood when it came time for bed but it took almost an hour to get her to sleep. She was very giddy, but eventually the two of us fell asleep in each other’s arms.

New photos.

Photos from February 12 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 11th 2013

Sadbh slept like a log all night and did not wake until 5:45. She was in a great mood and was delighted to see Katie pop her head into the room.

Sadbh’s new nanny started today and since it was also her birthday Sadbh helped Katie draw a birthday card.

When Kat arrived, Sadbh was quite shy and did not seem too interested in spending any time with her. However, by the time Katie left for work, Sadbh was much happier and was having fun with Kat.

It was a very busy morning and later on they all head out for a walk through the neighborhood. Sadbh got very excited when all of a sudden they turned the corner and there were a couple of buses in front of her.

Katie headed home during lunch to help with trach care and thanks to a very playful morning, Sadbh was asleep in no time.

Trach care went well and soon Katie was heading back to work as Sadbh was fast asleep in her cot.

Two and a half hours later Sadbh was awake and very hungry. She had a huge dinner and afterwards she was ready for the fun to start.

Granddad brought out some cup cakes just before Kat’s shift ended and Sadbh’s eyes almost popped out of her head. She immediately asked for “chocolate” with the biggest grin on her face. Needless to say, she scoffed down half a chocolate cup cake and ended up with chocolate smeared all over her face.

We tested the trach cap not long after I returned home and Sadbh did great for almost an hour. You could still hear strider when she breathed, however she maintained her composure quite well and seemed very happy playing with her bubbles and water.

She was in a very playful mood all evening and was very excited when Katie arrived home.

The fun and games continued until bedtime, but it took an hour and a half to get Sadbh settled down to sleep.

New photos.

Photos from February 11 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 10th 2013 (22 months old today)

Sadbh had a very good night but woke up very early. She woke up shortly after 5am and was very happy playing with Julie until 6.

Since she was still quite tired Katie brought her up to bed in the hope that she would fall back to sleep.

This was wishful thinking for the two of us as Sadbh had no intention on going back to sleep.

Eventually it was time to head downstairs for breakfast.

She had a great morning and spent it playing with her toys and little kitchen. She was in a fantastic mood and danced around the living room like crazy.

At one point I was trying to sweep the dining room floor when Sadbh came around the corner and insisted in helping. She had an oven mitt in one hand and the sweeping brush in the other.

Eventually she grew sleepy so we gave her a bath and got everything set up for trach care.

Sadbh fell into a deep sleep allowing Katie and I to manage trach care without any problems. Her neck still looked quite tender on one side so she did flinch when we were cleaning that area.

She only napped for 40 minutes but woke up full of smiles.

After lunch we all headed over to Greenlake for a walk. It was quite chilly but Sadbh was bundled up nice and snug. She was delighted to be out and about and loved all the dogs that we passed.

She especially enjoyed a busker that was playing music and insisted on playing hide and seek with him as he performed.

We passed a school bus on the drive home and Sadbh got so excited. She had this surprised look on her face and started shouting “wheels bus!”.

Sadbh wore her trach cap for 40 minutes this evening while playing with her bubbles in the bathtub. She loves playing with the water and all her bath toys.

She even practiced sitting on her potty, although she never did use it for its intended purpose.

For the past couple of days Sadbh has been complaining of discomfort. She points at her diaper and says “owwa nappy”. She doesn’t seem to be constipated but she’s definitely experiencing some issues. One of the side affects of antibiotics is potential bowel bacterial infection and considering that she was taking two different antibiotics over a 17-day period, this is a possibility. That said, we have been giving her a remedy to counter that so we are not sure exactly what is going on.

Sadbh had a good mix of food for dinner. Rice, chicken curry, naan bread, black beans, spinach and yogurt. I explained to her that she should eat her spinach, as it will help with her bottom. With that Sadbh grabbed a handful and rubbed it into her bum. It was so funny and we all nearly fell out of our seats with laughter.

Sadbh was exhausted after such a long day so she went to be an hour earlier than usual.

New photos.

Photos from February 10 2012

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – February 9th 2013

Katie and I went out to watch a movie after we got Sadbh off to sleep and Granddad and Nana looked after her until Julie arrived.

Sadbh woke up at 10pm just when Julie arrived. Granddad was quick to get her back to sleep, but moments later she was wide awake so Julie took over. It did not take long before Julie had Sadbh back to sleep and thankfully she slept great until just before 6am.

Typically I take over from Julie in the mornings, however since Sadbh was awake so early Katie headed down to take over. Sadbh was in a really good mood and she said thank you to Julie as she left.

After breakfast Sadbh came up to bed but demanded to watch the telly. She wasn’t happy with Curious George and really wanted to watch her wheels on the bus show.

Since it was my turn, both of us headed downstairs so she could watch her favorite show.

Sadbh was delighted when I pulled out her iPad and turned on Wheels on the bus. She devoured her second breakfast and was so happy with herself.

It was a damp cool day so Katie and I decided to organize the basement. Sadbh has so many clothes and toys and they take up so much space.

Nana and Granddad were very helpful and looked after Sadbh while Katie and I got busy organizing and clearing out the basement.

Before we knew it a couple of hours had flown by and it was time for trach care. Nana and Granddad bathed Sadbh and within no time she was in a deep sleep and ready for trach care.

Her neck was looking quite tender on the right side so Katie applied a dressing to allow it to heal.

She slept right through trach care and on for another hour and a half.

Katie and I were still busy spring-cleaning so Sadbh joined us in the basement as we organized. She had so much fun playing with all her toys.

Somehow she found a life jacket and immediately wanted to wear it. It fitted perfectly and she wore it for the next three hours.

It was a great evening and between the three of us we all accomplished what we needed to get done.

When it came time for dinner Sadbh insisted on helping out. We had no choice but to allow her to mix in the salad dressing and I have to admit it was a great salad.

Sadbh was exhausted when it came time for bed and was fast asleep in no time.

I hope she has a better night sleep tonight and that she sleeps in a little later than she did this morning.

New photos.

Photos from February 9 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 8th 2013

Sadbh slept great and woke shortly after 6am. Her heart rate and blood oxygen were perfect all night and I don’t think Julie even had to suction.

After a nice big breakfast it was time for the fun and games to start. She was busy playing with her toy kitchen and she was having a great time.

It was a pleasant day so later on Sadbh, Nana and Granddad all headed off for a walk around the neighborhood.

As usual Sadbh had a great time and really enjoyed being out in the fresh air.

Since we did not have a nurse today I came home from work for an hour to manage trach care. Granddad was getting everything set up as I arrived and I was greeted at the door by a tired but happy little girl.

She was exhausted but still had so much energy to burn off. Nana gave her a bath and before we knew it she was fast asleep.

Trach care did not take long and thankfully Sadbh slept right through it.

She ended up sleeping for two hours and was very happy when she finally woke up.

Dinner was next on the schedule and she had a huge appetite. She ate so much that she really did not have much of an appetite for the rest of the evening.

It was a fun evening and Sadbh and I got to play with her train set for a while.

She could not stop singing “the wheels on the bus” song and thankfully I was able to video record it.

When it came time for bed Sadbh was getting a little bit cranky. She was very tired and wanted some serious cuddle time with her mommy. After washing up and brushing her teeth, it was time to kiss Nana and Granddad good night. As Katie brought Sadbh to her room, Sadbh shouted out “Happy dreams”.

New photos.

Photos from February 8 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 7th 2013

Sadbh had a good night but woke up for a short while around 2. She asked for Katie and when Larissa explained that she was sleeping, Sadbh decided that she wanted to play with Larissa instead. Unfortunately for Sadbh, Larissa did not entertain the idea of playing at 2am so Sadbh eventually went back to sleep.

She slept great for the rest of the night and woke up shortly after 6.

She was quite content in her cot, however, and she surprised Katie by lying there playing with her binkys. She stayed like that for almost an hour and was in a great mood.

When she finally got up it was time for breakfast and she had a big appetite.

She had a very relaxing morning and when Caity arrived at 10 it was time to head down to the basement to play with her train set and other toys.

It was a cool but sunny day so they all headed out around the block for a walk. Sadbh was very happy to be out and about.

They were out for about 40 minutes when Sadbh started to get tired. As soon as they arrived home and unloaded all her equipment it was time for her bath, sleep and trach care.

Sadbh slept soundly for two hours and woke up in a great mood after a very restful sleep.

After dinner and a chance to catch up with some playtime, Sadbh, Granddad and Nana bundled up and headed out for another walk. This time they headed up to the campus of Seattle University. Sadbh loves the campus especially the hustle and bustle of all the students.

She had a wonderful evening and was full of energy and fun. She wore her cap for 50 minutes and was very excited when we put a trach cap on her toy monkey.

Sadbh has a monkey named Spud-Monkey and we put Sadbh’s first trach on Spud as soon as we changed out her first ever trach. Today we decided to cap Spud-Monkey to show Sadbh that it can be done and that it’s nothing to be afraid of.

When it came time for bed she insisted on taking Spud-Monkey with her.

New photos.

Photos from February 7 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 6th 2013

It was a much better night for Sadbh and she had a very comfortable sleep until just before Larissa’s shift ended at 6.

This worked out well as Sadbh got to spend a few minutes with Larissa before she left.

She had a big breakfast and could not wait to start the days play activities.

Caity worked today and since the weather was dry they all headed out for a walk around the neighborhood. The power company has a couple of telephone poles lying along the footpath down the street and Sadbh loves to walk along them.

Sadbh also enjoyed checking out a few cats in the neighborhood and they seemed equally interested in her.

When they arrived back at the house, Sadbh could not wait to show Caity her new train-set from her cousins in New Zealand.

Eventually the excitement of the morning got to her and it was time for her bath, nap and trach care.

Everything went great and Sadbh slept for three hours afterwards.

When she woke up she very hungry and very playful. Thankfully, her appetite is back in full and you can see she is starting to put on the weight after being sick with pneumonia,

She wore her cap today for half an hour and wore her Passy Muir Valve for most of the day.

She had a great evening but was very shy when uncle Neil stopped by to say hi. It was the funniest thing. She cuddled up with Granddad first and wouldn’t even look at Neil. Even when she was in my arms she acted extremely shy. I have no idea what got into her as she knows Neil and has been very affectionate towards him in the past.

When it came time for bed, Sadbh got very playful with her socks, gloves and hats. She took one of her socks and placed it on her hand and started to pretend it was a puppet talking to herself. It was one of the funniest things I had seen.

She is quite a character.

New photos.

Photos from February 6 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – February 5th 2013

Sadbh had a restless night and woke up a number of times. Larissa was able to get her back to sleep each time, but her heart rate did not drop below 100 for long throughout the night.

She woke up around 6:45 in great spirits. She was very happy to see Katie and before breakfast she wanted to sit in the rocking chair to read one of her books. It was a sweet moment but was made even sweeter when she had all her binkys in her lap.

Afterwards it was time for breakfast in which she devoured with serious determination.

As soon as she was finished with breakfast, it was time to play with Nana and Granddad.

Sadbh did not have a nurse working today so Ali-Baba came by to hang out and help with trach care. Sadbh was delighted to see her and Ali-Baba got stuck in on the fun.

For lunch she had a tiny drop of Irish Tea mixed in with her milk. She was in heaven and really enjoyed the tea, even though it was very milky.

Trach care was a little later than usual today but Sadbh had no problem falling asleep. She slept right through it and on for two hours.

She had a fun packed evening and got to play with a model train set that she got from her cousins in New Zealand. Conor has the same train and knew that Sadbh would love it so he got his mom to get one for Sadbh. Conor was right and Sadbh loved it.

She wore her Passy Muir Valve for a few hours today and just before dinner she asked Katie to put her cap on. She tolerated it for a few minutes but it seems that we are slowly getting back on track to practicing her PMV and cap in preparation for her next visit with Dr. Inglis.

Bedtime was hilarious as Sadbh had to try on a few different pajamas. She wouldn’t allow us to put her pajama bottoms on and insisted on wearing them around her neck like a scarf. Eventually we got one pair on, but she still had to wear the other as a scarf and then she could not stop checking herself out in the mirror.

She did look adorable, but she knew that also.

New photos.

Photos from February 5 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 4th 2013

Sadbh slept great last night and woke up around 6:30. She was well rested and hungry for breakfast.

After her belly was full, it was then time for the fun to begin.

Later on Sadbh was delighted when Su Jin arrived.

The weather was mild so they all headed out for a walk through the neighborhood. Sadbh came across a few dogs and she did not want to leave. She really enjoyed watching them and even wanted to follow them home.

Shortly after arriving home it was time for her nap and trach care. Sadbh slept right through and slept on for a total of two and a half hours.

She woke up in a fantastic mood and ready for her dinner. The rest of her evening was spent playing in the basement and hanging out. She was very excited when Katie arrived home.  She surprised everyone by sampling some of Katie’s salad for supper.  Her face was priceless, as she tasted the lemon/mustard salad dressing.  She quickly decided she loved it and couldn’t get enough.

It took ages to get her to sleep tonight. We have found that the nebulizer gets her heart rate racing so she’s all hyped up when it comes time for bed.

Eventually she calmed down and fell asleep.

Larissa is working tonight so hopefully Sadbh will have another good night sleep.

New photos.

Photos from February 4 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 3rd 2013

Sadbh had a much better night and slept right through without any problems. She woke up just after Julie left at 6am and immediately wanted me to bring her up to mommy.

She had a fun morning playing with everyone and when it came time for her nap she was well and truly wiped out.

Trach care was easy and Sadbh slept right through it.

She slept for an hour and woke up in a lot of pain. We noticed a couple of new teeth coming in so I’m sure this is what was causing her distress. I gave her a little dab of Orogel to help ease the pain but she still seemed very upset.

It took a while for her to calm down and when she did she was back into her usual good mood.

The fun and games continued and we had a great time playing with her toys in the basement. She noticed her old chair in the basement that we used shortly after she arrived home from the hospital and she insisted that I pull it out of the storage space so she could sit in it. She got more use out of it today than she did when she did in the past and she could not stop getting in and out of it.

Later we headed to University Village and she really enjoyed being out of the house. She was bundled up so snug that she looked adorable with all the different colors and layers.

After dinner tonight she showed off her newfound chair to Granddad and Nana and later she entertained us with a dancing session. She had so much fun and you could tell she was starting to get tired.

As Katie and I were getting her ready to bed her pajama top got stuck for a moment on her head. She thought this was hilarious and immediately stuck her binky through her pajama top into her mouth. It was a priceless moment and all three of us were in hysterics laughing.

It did not take long for Sadbh to fall asleep tonight. Hopefully she will sleep well all night and that her teeth will not bother her.

New photos.

Photos from February 3 2012.

All the best,

Wayne, Katie and Sadbh.