Sadbh’s update – March 31st 2013

It was yet another great night sleep for Sadbh and she woke up in a very good mood at 6:40 and was delighted to see Granddad sitting there looking after her.

She had a great morning hanging out with Granddad and later on we all headed to mass for Easter.

Sadbh loved all the music and singing and could not stop clapping along with everyone else.

Mass took two hours so we had to break out a number of things to keep Sadbh distracted and calm. At times she wanted to go for a walkabout and to explore the church. All in all she did great and was very well behaved.

After mass we all headed down to Pike Place Market. The market was packed but we were very lucky and found a parking spot straight away.

Sadbh could not wait to get out of the car so she could wander through the crowds.

We picked up a few piroshky’s and headed over to the park to enjoy the view and have a snack. Sadbh loved her piroshky and kicked back in her stroller with a big smile on her face.

After a nice stroll through the market we headed home to manage trach care.

Sadbh enjoyed her bath and loved having her hair all spiked up with the shampoo.

It took a while to get her off to sleep but once she was out it did not take us long to manage trach care.

Katie noticed that Sadbh had been clawing at her neck under the trach ties so we dressed that area with medical tape to help it heal.

Sadbh slept for an hour and woke up startled. She looked panicked and checked to make sure that her humidifier collar was on and then that all her binkies were accounted for.

It was still a lovely evening so we loaded up Sadbh’s red wagon and the five of us headed off up to Seattle University for a walk. Sadbh rode along for half the trip but I think the ride got too bumpy for her so she wanted to get out and be carried.

The campus was very quiet so we found a park bench and hung out in the sunshine. Sadbh was in her element and had Katie and Granddad running and racing after her.

There is a lovely church on the campus and Sadbh loves hanging out with my parents in there. She likes to talk really loud or even shout to hear her echo. As soon as we set foot in the door she was off making as much noise as she could. Thankfully we were the only ones there so she was not disturbing anyone.

She was very tired this evening when it came time for bed and she only wanted Katie to put her to sleep.

Thankfully she was fast asleep very quickly and off on her way to a deep sleep.

She has another new nurse starting tonight so hopefully she will sleep well.

New photos.

Photos from March 31 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 30th 2013

Sadbh slept really well last night and despite moving to the opposite end of her cot she did not wake until 6:40.

We had asked Danielle, her new nurse, not to cap her trach so she could become familiar with Sadbh’s baseline sats under normal circumstances and thankfully she got to experience Sadbh sleeping in a very comfortable state.

Sadbh had a fun morning playing with her toys and hanging out with Nana and Granddad.

Since it was such a beautiful day we decided to head off to La Conner and Anacortes for a road trip.

We were hoping that Sadbh would nap on the way but she was too excited and after a short while she wanted to get out of the car.

By the time we arrived at Anacortes, Sadbh was very happy to get out of the car. She could not wait to stretch her legs and to start checking out all the shops.

We headed down to the waterfront to check out the marina and Sadbh was excited to see all the boats.

She was even more excited every time a motorcycle drove by and since it was a gorgeous day there were plenty of them to catch her attention.

We next headed back towards La Conner and stopped off along the way to check out a tulip nursery. By now Sadbh had fallen asleep so I hung out in the car with her while she napped. When she woke up thirty minutes later it did not take us long to catch up with everyone else.

Sadbh was still a little sleepy and only wanted Katie, but she soon cheered up when Nana and Granddad bought her an ice cream cone.

She was in her element and soon her face was covered in vanilla ice cream. She did not want to share but did a great job holding the cone with both hands so as not to drop it.

The flowerbeds were incredible to look at and Sadbh really enjoyed herself. We next headed into the town of La Conner and as soon as we got out of the car Sadbh came across a sculpture of a dog and kept calling for it to follow her. “Come on doggie, come on”. It was so funny and she even gained an audience from a few passersby’s.

La Conner is a beautiful town and we all had a great time. Sadbh even made a couple of friends while we were having dinner.

The sun was starting to set just as we were leaving town and Sadbh could not stop saying good-bye to the sun.

Sadbh ended up going to sleep an hour and a half later than usual and as soon as she had her bath and was snuggled up in her pajamas Katie and I started trach care. Thankfully she was out cold so we were able to get things done fairly quickly. Despite the fact that both Katie and I were exhausted after a long day, we managed to get trach care set up and completed in record time.

New photos.

Photos from March 30 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 29th 2013

Sadbh slept great last night. Thirteen minutes after Larissa capped her trach Sadbh sat up, pulled her cap off and handed it to Larissa and went right back to sleep.

Larissa capped Sadbh’s trach a second time later on and Sadbh slept great for ages. Eventually Larissa noticed that Sadbh had discretely pulled her cap off and gone back to sleep. She was curled up in a ball and since she had her mist collar on it was not easy to see if she had it on or not.

She slept solid until 6:15 and woke up with a huge smile as soon as she laid her eyes on Katie.

She had a wonderful morning and got to play out in the back garden for a while. It was a beautiful day so Sadbh and her gang headed out for a nice long walk through the neighborhood.

Sadbh got very excited when she saw this bright yellow school bus coming down the street and with a huge smile she started waving like crazy.

She caught the drivers attention and he pulled in and offered Sadbh a spin. Unfortunately, due to all her equipment she was unable to go for a spin but she did get a chance to climb on board to check the school bus out.

When she arrived home it was time to paint her eggs for Easter. She had a great time and she did a great job with the help of Amy and Nana.

It was a very exciting morning so when it came time for her nap she had no problems going to sleep.

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

One of Sadbh’s new night nurses started tonight so we spent the first hour or so showing her all the equipment, supplies and going over how to care for Sadbh. Sadbh was obviously exhausted as she hardly moved the whole time.

Hopefully Sadbh will have a good nigh sleep.

New photos.

Photos from March 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 28th 2013

Sadbh had a beautiful night and slept so well. She was so relaxed that she tolerated having her trach capped for two hours and thirty-one minutes in the one go. This is an all time record and we are so impressed that she did so well.

She slept until 6:30 and woke up in a great mood. After a nice big cuddle with Katie it was time to head upstairs while Katie got ready for work. Sadbh got to catch up on Kipper but was frightened by the fire-breathing dragon. Thankfully it was just a cartoon so she was safe and sound with her mommy.

She had a nice big hearty breakfast when she came back downstairs and was excited when Amy arrived.

Her day got even more exciting when her old nurse Molly stopped by for a visit. Molly was one of her nurses from Children’s Hospital and she moved to Utah last year.

Sadbh was very shy and it took a while for her to warm up to Molly. Eventually she came out of her shell and the fun and games started up again. Even Ali-Baba stopped by for a while and was delighted to see Molly again.

Trach care was almost postponed until this evening when Sadbh refused to go to sleep. Thankfully Ali-Baba persisted and Sadbh finally gave in.

Granddad cleaned while Amy held and everything went well.

Sadbh slept for almost three hours and woke up in a wonderful mood just before I arrived home from work.

Katie was able to get home a little earlier than usual so we packed all of Sadbh’s medical equipment into her red wagon and headed out for a walk in the sunshine.

It was not long before we bumped into Maya and her baby sister Elliott. Sadbh and Mya exchanged some flowers and Maya showed off her Easter eggs.

Next we met Charlotte and both girls were able to baby sign to each other.

Sadbh had a great walk and the rest of her evening was spent having fun with Katie and I.

Bedtime appeared to go easy tonight and Sadbh seemed to drop off to sleep very quickly. I was wrong and before I knew it she was up sitting in her cot asking for me to come back in to rock her to sleep. It took about fifteen minutes and she was off into a deep sleep.

New photos.

Photos from March 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 27th 2013

Sadbh had another restless night however she tolerated her trach being capped for an hour and twenty-two minutes.

Despite being so restless her sats were good and her temperature was normal so we think she was over the worst of whatever she was fighting.

By 7:00 she was wide-awake and in a very good mood. She and Katie had a nice long cuddle and they even got some playtime in before breakfast.

The weather was not too bad this morning so after breakfast Sadbh and her entourage headed up to Trader Joes to get some groceries. There were some good tunes being played in the store and as they waiting in line to check out Sadbh started bopping to the music, much to the enjoyment of those around her.

Thankfully Sadbh took her nap today so Granddad and Amy were able to manage trach care. She was in a deep sleep and ended up sleeping for a couple of hours.

She was in a great mood when she finally woke up she was delighted when she received fish and chips for dinner. For desert she had strawberries and blueberries.

Sadbh was full of energy for the rest of the evening and had so much fun playing with her toys.

By dinnertime she was starting to get very tired and had moments of crankiness. She would only allow Katie to put her to bed and was very happy when Katie did.

New photos.

Photos from March 27 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 26th 2013

Sadbh woke up a lot through the night and was very restless. Larissa was able to cap her trach for an hour but decided to hold off on capping any further in order to let her rest as much as possible.

Despite her restlessness, Sadbh did not wake until after 8am. By now Katie was getting ready for work and Amy was looking after Sadbh.

She had a very playful and active morning. After a big breakfast Sadbh and her entourage headed out for a walk around the neighborhood. The whole time she was out she wore her cap and managed to tolerate it for an hour.

Ali-Baba arrived at the house at the same time as everyone else and Sadbh was so happy to see her.

The fun continued and after a while it was time for Sadbh’s bath and nap. She really enjoyed her bath but she would not go to sleep afterwards. No matter how hard they tried Sadbh had no intention of going to sleep.

The rest of her evening was spent running and racing around the house. She had so much energy but showed no sign in slowing down. By the time I arrived home from work she was still very energetic, however you could see that she was wired and would soon burn out.

She actually lasted until 7:30 before starting to slow down so we changed her into her pajamas, brushed her teeth and she was soon out cold in Katie’s arms.

Trach care went well and thankfully she slept right through.

She did wake up a couple of times afterwards but quickly went back to sleep.

Her temperature was a little higher than usual throughout the day but her respiratory rate and heart rate all seemed normal. Fingers crossed she is not in the beginning stages of a cold.

New photos.

Photos from March 26 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 25th 2013

Sadbh slept well and tolerated her trach cap for an hour and a half before getting restless. She finally dropped back into a deep sleep shortly after 3 and slept soundly for the rest of the night. Julie could hear wheezing in Sadbh’s lungs so she advised us to keep a close eye on her to make sure it did not get any worse.

Last night was Julie’s final shift and she is going to be greatly missed. She took exceptional care of Sadbh over the past few months. Sadbh will also miss her late night stories and games.

Sadbh finally woke up at 6:45 and was a little off her usual good mood. Like the rest of us she is not a big fan of Mondays. She did not want Katie to go to work and kept trying to distract her from leaving.

It turned out to be a beautiful day so shortly after breakfast Sadbh got a chance to head out to explore the garden. She had a lot fun and afterwards she headed off for a walk with Nana, Granddad and Amy.

Trach care was managed early in the afternoon and Granddad cleaned while Amy held. Thankfully it went well and Sadbh slept for an hour and forty minutes.

After Sadbh woke up she got to have lunch out in the back yard. She had a wonderful time hanging out with everyone out in the garden and even got to take her trike our for a ride. She keeps calling it her motorcycle and this morning asked for a red helmet. By this evening her helmet whish changed from red to all the colors of the rainbow.

When I arrived home she insisted on playing in the car and pressed every single button she could get her fingers on. She had the biggest grin on her face and did not want to leave.

She had a great evening and when it came time for bed she was wiped out. She really wanted Katie to put her to bed but was happy cuddling into me and was soon fast asleep.

New photos.

Photos from March 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 24th 2013

Sadbh had a much better night sleep but only managed to tolerate her trach cap for a combined hour and ten minutes over two sessions.

Granddad took over from Julie at 6am and Sadbh slept on for another 45 minutes.

She was in a great mood and was very happy to watch the sun rise from the back porch.

It was a very busy morning for Sadbh and she joined my parents for mass at the local church. Since it was Palm Sunday mass was a little longer than usual. As a result Sadbh eventually got bored and required a little more attention than usual.

Unfortunately, Sadbh lost her stuffed cat, Meow Meow, on the way home from mass.  Despite a full on search, she arrived home empty handed. Ali-Baba was able to run out and find a replacement (fraternal twins?) so hopefully Sadbh will be happy with Meow Meow 2 instead.

After a busy and playful morning it was finally time for trach care. Sadbh really enjoyed her bath and after a twenty-minute cuddle she was off to sleep.

Katie and I managed trach care fairly easily, however, Sadbh’s neck appeared to be sore in one spot so we dressed it up to help heal it.

After sleeping for an hour and twenty minutes it was time for a bite to eat and for the fun and games to start up again. Initially she was very slow to leave her cot and had a great time playing with as many stuffed animals that could fit in with her.

The sun was shining high in the sky and it was turning out to be a beautiful spring day. We loaded up the car and headed over to Greenlake for a walk.

It was wonderful and even the turtles were out basking in the sun. Sadbh walked almost half way around the lake and was so excited when she got close to a few ducks.

She even got to chat with her cousins and aunt in Portland.

After our walk we meet up with Clodagh, Cormac and their parents for a bite to eat. Uncle Neil also joined us and Sadbh was beside herself with excitement when she met her friends.

We figured that the long walk around the lake would have tired Sadbh out but that was not the case. She had more energy than ever and both Katie and I ended up taking turns chasing her around the restaurant.

Thankfully it was a kid friendly establishment.

It did not take long to get Sadbh off to sleep when it came time for bed. She was wiped out from a very fun day and fell asleep in Katie’s arms in no time.

New photos.

Photos from March 24 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 23rd 2013

It was a restless night for Sadbh and she tolerated her trach cap for only an hour. Thankfully Julie was quick to respond every time Sadbh woke up and was able to get her back to sleep quickly.

She finally woke up at 6:40 and was over the moon to see Katie sitting there next to her cot.

Sadbh had so much energy this morning and was in a fantastic mood. She came up to our bed for a while and after some cuddles she announced that she was stuck and wanted help out of bed. She really wanted to get to the phone so she could play with it.

Sadbh usually gets her way and she was happy walking around the bedroom pretending to be chatting on the phone to her god-daddy Derek.

As she finished up breakfast I showed her video footage of the Isle of Man TT motorcycle race. She loved it and asked to watch it two more times.

It was a beautiful day so we brought Sadbh outside to play on her trike. She had so much fun and was soon joined by her friend Maya. Both girls were playing in the garden and soon Maya had found a teeny tiny worm. Sadbh was impressed with how brave Maya was and was delighted with the discovery.   

After all the excitement it was time for a nap and trach care. It took a while to get Sadbh off to sleep and as soon as she was we were able to manage trach care very easily.

She had a great sleep and woke up still very sleepy.

After something to eat we all bundled into the car and headed off to Snoqualmie to check out the old trains. Sadbh was very impressed and could not believe her eyes.

The trains do not run this time of year so we must bring her back later in the spring so she can go for a ride.

Before heading back to town we stopped by the falls to check it out. Due to all the snow in the mountains this winter the falls were gushing and we all got wet with it’s mist. Sadbh was fascinated and could not stop looking at it.

On the way home we stopped by my office so my parents could check it out and Sadbh did not want to leave. We sat her in my chair and she was very happy playing with my keyboard and mouse. It’s funny sometimes the things that can cause so much entertainment for a child.

Just before bedtime Nana and Granddad dressed Sadbh up in a very cute sailors outfit. She loved it and danced around the house to a few of her favorite songs.

Sadbh also had to put all her stuffed animals to sleep with Granddad and Nana’s help she laid them out on the couch and covered them up with blankets.

Sadbh had a wonderful day and really enjoyed herself.  Hopefully she will have a much better night sleep tonight and that Julie will have more success capping Sadbh’s trach.

New photos.

Photos from March 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 22nd 2013

Sadbh did another two and a half hours with her trach capped last night. It was over two sessions and she did great each time.

By 6:40 she was wide-awake and excited for her day to start.

Sadbh was hungry for breakfast so she hung out with Granddad while Katie got ready for work.

Amy worked today and after breakfast Sadbh spent the rest of the morning playing with everyone.

Later they all headed out for a walk through the neighborhood. Sadbh was happy to be out and about and by 1pm she was fast asleep and ready for trach care.

Katie, Amy and I had a training appointment with Jackie, Sadbh’s respiratory therapist, at Children’s hospital. The appointment was for Katie and I to brush up on our CPR skills and for Amy to get trained on emergency trach changing and suctioning.

Sadbh slept for over two and a half hours and woke up very happy. It was time for food and for the fun to start again.

Katie and I interviewed two potential night nurses this evening and thankfully both nurses seemed good. Sadbh even got to meet them and after about 5 minutes of being very shy she started to warm up to each of them.

As soon as they both left it was time for Katie and I to have fun with Sadbh. We had a great evening and Sadbh received quite a few tickles from the tickle monster.

Bedtime was also fun as Katie red a few books to Sadbh.

New photos.

Photos from March 22 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 21st 2013

Sadbh tolerated her trach cap for two and a half hours during the night, another record night.  Her first round was 59 minutes and the second time she lasted for just over an hour and a half. Her blood oxygen and heart rate was stable the entire time and she only got restless at the very end of each session.

She woke up at 6:20 and immediately did another 50 minutes while hanging out with Katie.

Amy arrived just before Katie left for work and Sadbh was delighted with everyone fussing over her.

After a large breakfast Sadbh and Amy got down to some serious fun. Later on Ali-Baba arrived with a new book and a puzzle for Sadbh. She was thrilled.

Sadbh started to get very tired just before 1 so it was time for a bath and a cuddle with Ali-Baba until she was fast asleep.

Granddad and Amy managed trach care today with Granddad cleaning and Amy holding Sadbh’s trach. This was a little too soon for our liking as we wanted Amy to go through some formal training on trach care first before she got involved in participating in trach care and suctioning.

Sadbh slept solid for two hours and woke up in a great mood.

Since she was not very hungry she only had a light dinner. She could not wait to get back to playing with her toys and when I arrived home she was in a fantastic mood.

Katie had an appointment after work and my parents headed out for a long walk so Sadbh and I hung out together for the evening.

We chased each other around the house for ages and when she was done with that I had to push her around on her toy lawnmower for 45 minutes solid. Every time I stopped she would give out to me and if she noticed that I did not have both hands on the handlebar she would say “two hands daddy”.

I was lucky that our path lead through the kitchen so I was able to make dinner as we lapped the house.

For dinner tonight Sadbh could not get enough Parmesan cheese. She shoveled fist full’s into her mouth and kept asking for more.

Bedtime was easy tonight and Sadbh dropped off to sleep in no time whatsoever.

New photos.

Photos from March 21 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 20th 2013

Sadbh slept like a log and Larissa was able to cap her trach twice and each time she lasted for at least an hour.

When she woke up at 6:40 she heard a plane flying overhead. Katie told her that it was a plane flying to Hawaii and all of a sudden Sadbh wanted to go and she wanted everyone to go with her.

Both Amy and Caity were working today so Sadbh had a lot of people fussing over her.

Trach care went well and Sadbh slept for a couple of hours. She woke up very happy but did not have much of an appetite.

I arrived home later than usual and just as I was pulling up the driveway, there was Sadbh, Nana and Granddad heading out for a walk. Sadbh greeted me with a huge smile but was soon distracted by our neighbors two dogs.

Despite the sunshine, it was quite cool so Sadbh did not stay out for long.

She had a great evening and it was spent playing with each of us.

Just before bedtime Sadbh got caught up on a few of her favorite books. By the time she was done her eyes were starting to get very heavy so it did not take long before she was fast asleep in her cot.

New photos.

Photos from March 20 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 19th 2013

Sadbh slept really well last night. Her first capping session lasted only twelve minutes when all of a sudden she sat up in her cot. She looked at Larissa and implied that she wanted her trach cap to be removed. As soon as Larissa switched it out for her guard she was back to sleep within seconds.

Larissa gave it a go a couple of hours later and Sadbh tolerated it for an hour and twelve minutes. She was very relaxed throughout and did not toss and turn as she usually does.

Sadbh finally woke up at 6:40 in a very good mood. After a great night sleep she was raring to go.

She was very happy hanging out with Katie as she got ready for work and as soon as Katie was ready it was time for breakfast.

Sadbh was very happy to see Amy when she arrived at 8 and knew that the fun was going to continue.

Ali-Baba stopped by for a visit later on in the morning and Sadbh was delighted. They all headed out for a nice leisurely walk around the neighborhood and Sadbh was on a mission again to find busses, cats and dogs.

Ali-Baba gave Sadbh a bath just before nap time and soon she was fast asleep.

Trach care went well and Amy watched on.

Sadbh slept for two and a half hours and woke up very happy.

She was very playful for the rest of the evening and had a lot of energy to burn. It was hard to keep up as she had Katie and I running in circles after her.

It did not take long to get her to sleep tonight as she was out for the count within thirty minutes.

New photos.

Photos from March 19 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 18th 2013

Sadbh had a good night and Julie managed to cap her trach a couple of times. The first time she lasted for an hour and ten minutes, however she started to cry four minutes into the second capping so Julie replaced it with her trach guard so she could go back to sleep.

She’s actually getting more comfortable wearing the cap now when she wears it during her sleep.

She had a nice sleep in this morning and woke up at 7:20. She was in an excellent mood and was delighted to see Katie.

Sadbh was just about to start breakfast when her new nanny, Amy, knocked on the door. Sadbh greeted her with a big smile.

After breakfast they all headed out for a nice walk and Sadbh insisted on searching for cats and dogs.

She had a great time and after a while was starting to get tired.

Sadbh enjoyed her bath as usual and was soon fast asleep in Nana’s arms. Trach care went well and Amy was able to stand by to learn. She will soon be taking over when my parents leave next month.

Sadbh slept for two hours and woke up very happy and could not wait to play with Amy again.

They both had a great afternoon and when it came time for Amy to go home, Sadbh, Nana and Granddad walked her to the bus stop so Sadbh could see the bus. She was thrilled when the bus arrived.

Sadbh’s evening was spent playing with her toys and she had a great time. For some reason she wanted to wear my motorcycle helmet and when she was done she wanted me to wear it.

She is getting so much better at forming sentences and every day she surprises us with something new.

At bedtime Sadbh kept calling out for Arnold who is one of the characters on her favorite cartoon Kipper. She was exhausted tired but kept fighting it. It took over an hour of her flopping around her cot before she finally gave in and drifted off to sleep, a very tired little girl.

New photos.

Photos from March 18 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 17th 2013

Sadbh slept great and even tolerated having her trach capped for an hour and ten minutes.

Granddad took over from Julie at 6am and kept a close eye on Sadbh until she woke up at 7:20.

She was looking for Katie when she woke up but was very happy to be hanging out with Granddad instead.

They played and had a big breakfast together and she was a very happy camper.

Katie and I were extremely grateful for the chance to sleep in and Sadbh was in a fantastic mood when we arrived downstairs a couple of hours later.

Sadbh went to mass with Nana and Granddad and she was all dressed up in a beautiful green and white dress that she received from her friend Conor’s grandmother, Marion. She looked beautiful and showed off her Irishness in full splendor.  

Since it was her second mass in as many weeks, Sadbh was getting familiar with her surroundings and was a little more adventurous. Granddad was certainly on his toes keeping up with Sadbh but all in all she was fairly well behaved.

Trach care went well as Sadbh was very tired. Her neck looked good despite the redness from the trach ties.

Sadbh woke up very unhappy after a two-hour nap. As soon as she laid eyes on Katie she started to laugh in delight and quickly cuddled into her.

After a quick lunch we loaded up the car and headed to the Seattle Center for the Irish heritage show. Sadbh was delighted when she heard the music and could not wait to join in on the dancing.

There was a great atmosphere and it was not long before Sadbh was tapping her foot to the Ceili tunes. I have a feeling that Sadbh might have a future in Irish dancing.

Later we headed over to West Seattle for dinner and Sadbh was still beaming from her afternoon. She was in flying form and could not stop smiling and clapping.

Sadbh fell asleep within 15 minutes of going to bed but woke up moments later. It took almost an hour to get her to sleep afterwards.

New photos.

Photos from March 17 2012.

All the best agus lá Fhéile Pádraig sona duit,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 16th 2013

Sadbh had a good night and wore her trach cap a couple of times. The first was for 20 minutes and the second was for 40 minutes. She did great each time but did start to get a little restless.

Julie’s shift ended at 6 so I took over to look after Sadbh. She slept for another 20 minutes and was eager to get upstairs to see Katie and hopefully Kipper.

She was in an excellent mood and wanted to play.

She had a fun filled morning and got to watch quite a bit of Sesame Street, Thomas the tank engine and Kipper. Katie and I were busy putting an offer together for Sadbh’s new nanny so Sadbh got to watch a little more of her iPad than usual.

Thankfully it was well worth it as Amy accepted the offer and will start working with Sadbh on Monday.

Just before nap time Sadbh got to Skype with her aunt Trish in New Zealand. Since they are a day ahead of us it was already St. Patrick’s day in NZ and more importantly it was my sisters birthday. Sadbh greeted her aunt by wishing her a happy birthday and later on she joined in on singing to her a happy birthday.

When it finally came time for her nap she was wiped out so it did not take long for her to fall asleep after her bath.

Trach care was very easy today and we were also able to change her trach for a new one. Sadbh slept great throughout and barely flinched when I inserted the new trach into her airway.

After a two-hour nap she woke up very happy and extremely giddy. She could not stop playing with Katie and the both of them were in hysterics with laughter.

Once she was dressed it was time for a big feed and then off out for a walk through Madison Park.

We headed down to a dock on the lake and since the wind was blowing so hard the waves were rolling in off the lake. Sadbh was in her element and did not want to leave.

Our next destination was the kid’s park and Sadbh got to have so much fun swinging and playing on the other fun things.

The sun finally came out so we headed up to Volunteer Park up on Capitol Hill. It was kind of chilly due to the wind so we hung out in the car for a bit while enjoying the sunshine. Sadbh joined me up front and pressed every single button on the dash.

Eventually she asked me to move into the back seat so I asked if she wanted to drive us home. She immediately said yes as if she was an experienced driver.

Sadbh was exhausted when it came to bedtime tonight so it did not take long before she was fast asleep in her cot.

New photos.

Photos from March 16 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 15th 2013

Sadbh had a restless night and was tossing and turning all night long.

Julie tried the trach cap for 40 minutes on the first attempt and 20 minutes on the second.

She finally woke up at 6:30 and thankfully was in a very good mood.

Sadbh had a very busy morning. The nursing agency supervisor stopped by to recertify Sadbh and check out all her equipment.

Afterwards Sadbh had her appointment with Dr. Cavanaugh, her cranial sacral doctor. He focused on her upper torso and Sadbh was not bothered by it.

It was a very good session and Sadbh was in a very happy mood.

As soon as she arrived home it was time to get down to some serious playtime. Sadbh even got to explore the back garden and had lots of fun running around.

Eventually it was time for her nap and trach care.

Sadbh enjoyed soaking in her bath and was asleep not long after being dried off and into her pajamas.

Trach care went well and she slept for two hours.

When it was time to wake up Sadbh was in a very good mood and also very hungry.

Once her belly was full it was time for some more play and then she headed out for a walk through the neighborhood with Nana and Granddad.

The sun had come out and Sadbh was delighted to be out in the fresh air.

Later in the evening Sadbh wanted us to take her Passy Muir Valve off. It seems that she was a little uncomfortable so I took it off and put her humidifier nose on.

After changing her nappy she got very upset and struggled to tell us something. It appeared to be serious but since she did not have her PMV or cap on she did not have a voice. We were eventually relieved when we figured out that she only wanted cake. Crisis averted.

Last night we learned that both of our night nurses are leaving. Larissa is looking to move to days and Julie has accepted a job elsewhere.

We have tasked the agency to find replacements but we are not expecting positive results based on their track record.

New photos.

Photos from March 15 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 14th 2013

Larissa was successful in capping Sadbh’s trach for almost two hours total throughout the night. Her heart rate and blood oxygen level were good and she was very relaxed as she slept.

She woke up just before 7 and got to play with her stuffed animals for a while in bed before heading upstairs to watch Thomas the Train and Kipper.

Granddad took over as soon as it was time for Katie to head off to work and Sadbh was ready for breakfast. Granddad was busy making blueberry pancakes for breakfast and Sadbh could not wait to get tucked in.

Later in the morning Sadbh, Nana and Granddad headed out for a walk and Sadbh wore her trach cap the whole time.

She had a great time looking for buses, trucks and dogs and she even got to follow a few different cats along the way.

She was very tired when she arrived home so getting her ready for her nap was easy. Trach care went without a hitch and Sadbh slept for over two hours.

Sadbh had a fantastic evening and spent it playing with Katie and I. She definitely has a brazen streak and strong desire to push buttons, but what 23-month old doesn’t.

Including wearing her trach cap during the night, Sadbh wore her cap for over five and a half hours today. That is quite the accomplishment.

New photos.

Photos from March 14 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 13th 2013

Sadbh slept great again and thanks to Larissa she had two 30-minute trach capping sessions as she slept. She did fantastic and despite getting restless her heart rate and blood oxygen levels stayed where they should be.

She woke up at 6 and played with Katie for a while before heading upstairs to watch Kipper on her iPad as Katie got ready for work.

As Katie got ready to leave for work Sadbh cuddled up to Granddad and noticed that his face was cleanly shaven. She could not stop rubbing his face while also giving him big kisses.  It was just the sweetest thing.

Caity was back working today and Sadbh was excited to see her. Later in the morning Sadbh got a chance to head out for a walk with Caity, Nana and Granddad and she was very happy. She even got a chance to wear her trach cap while out and about but after 30 minutes she was done so Granddad put her Passy Muir Valve back on.

It’s been hard to get Sadbh to bed over the past few nights so Granddad worked hard to get Sadbh worn out and off to sleep for her nap much earlier than usual. She was out like a light at noon allowing Nana and Granddad to manage trach care.

Sadbh slept for over two hours and woke up ready to wear her cap again.

She had a great evening and we all did our best to tire her out. Just before bedtime Katie read a few books and Sadbh was very happy reading along.

She did great wearing her cap today.  All in, she clocked over 4 hours (including the time Larissa capped her during the night). 

New photos.

Photos from March 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 12th 2013

Sadbh slept great and did not wake until 6:45. Hopefully she is getting back on track with her sleeping schedule after the time change over the weekend.

Larissa tried out the trach cap a couple of times during the night and Sadbh did really well. She tolerated it for 22 minutes the first time and for 16 the second time.

She was delighted to see Katie when she woke up. It was time to head up stairs so Katie could get ready for work and Sadbh got a chance to catch up on Kipper on her iPad.

She drank a lot of milk this morning for her breakfast but only wanted a small amount of cereal

As soon as Katie left for work Sadbh had another shot at breakfast and she did much better this time all while wearing her trach cap.

After a busy morning of playing with her toys it was time to head out for a walk up to the university campus. Granddad and Nana were very impressed since she wore her trach cap for the entire walk.

It did not take long for Sadbh to fall asleep for her nap when they arrived home. She was out like a light so trach care was very straightforward.

She slept for two and a half hours and woke up hungry but happy.

Her evening was full of fun and she even helped unpack some of her medical supplies that arrived. She loves to help out, but we have pay attention to where she puts things so we can be sure to find them.

Before bed, Sadbh decided that her dolls needed to take their clothes off and use the potty.  Katie remembered that when we were at the Swedish Hospital NICU, just after Sadbh was born and before we were transferred to Seattle Children’s, one of Sadbh’s nurses packed up a set of teeny tiny baby nappies, nappies that would fit babies that were born to early. The nurse told us that some day Sadbh could put these nappies on her baby dolls. As soon as Sadbh seen the miniature nappies she started to put the nappies on her dolls.  Some of them were so small that it is impossible to believe a little baby could be that tiny. Sadbh was quite pleased with herself.

It took an obscene amount of time to get Sadbh to sleep tonight and just like the last few nights she insisted on having her back rubbed.

All in all she wore her trach cap for over four hours today.

New photos.

Photos from March 12 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 11th 2013

It took a long time for Sadbh to get to sleep but when she did she slept like a log.

Julie capped her trach a couple of times and Sadbh did great. The first time she lasted 25 minutes and the second time she lasted only 14 minutes. She started to get restless on the second try so Julie switched it for her guard allowing her to fall back into a calm sleep.

The time change over the weekend really threw Sadbh off and she woke up shortly before 8am in a wonderful mood and ready for breakfast.

She had a big breakfast and even wore her trach cap for an hour and a half.

It was a pleasant day so Sadbh, Nana and Granddad all headed out for a walk through the neighborhood. It was good to get her out of the house and into the fresh air. She really enjoyed being out and being able to stretch her legs.

Trach care went well and Sadbh slept for almost two hours. She had a big lunch when she woke up and got to wear her trach cap while watching Kipper on the TV.

Sadbh had a fantastic evening and was in a very playful mood. We had another nanny candidate visit tonight so Sadbh hung out in the basement playing with Nana and Granddad for a while as Katie and I met the potential nanny.

After 45 minutes or so I brought Sadbh up to meet the nanny. She was very shy at first but within a couple of minutes she was back to her playful self, running around having as much fun as possible. She really took a shine to the nanny and it seemed that the nanny took a shine to Sadbh also.

Let’s be honest, it’s hard not to.

Bedtime was hard again tonight with Sadbh fighting to stay up. She would not go to sleep and it took almost two hours to finally get her off.

New photos.

Photos from March 11 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 10th 2013

Sadbh slept great and managed to wear her trach cap a couple of times throughout the night. 

I took over from Julie at 6, however since the clocks changed last night it was actually only 5am. Sadbh was still fast asleep and did not wake for another hour.

She was excited to get upstairs to Katie and even more excited for a snuggle.

Sadbh went to church with my parents today and she really enjoyed herself. She danced to the choir and made a lot of new friends.

She missed Katie while she was at mass and on the way home she kept saying “mommy, where are you?”

The rest of her morning was spent playing with her toys and when she eventually started to get tired we started preparing for trach care.

Just after her bath she got a chance to Skype with her uncle Ger and aunt Ann back in Cork.

Trach care was very straightforward as Sadbh was in a deep sleep. Her neck looked very sore so we dressed it up on both sides with medical tape.

She was obviously very tired as she napped for over two and a half hours and when she finally woke up she was still very groggy.

Her mood improved after a bite to eat and a miniature cup cake and the rest of the evening was spent running around the house with her stuffed animals.

When it came time for bed she was quite delirious so it took both Katie and I a lot of effort to get her changed and ready for bed.

It was a lazy day for the most part but after such a busy Saturday it was good to get a chance to relax.

New photos.

Photos from March 10 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – March 9th 2013

Sadbh slept well and Julie was able to cap her trach a couple of times. The first time she lasted for 19 minutes but got very restless so she switched it back. The second time she lasted almost 15 minutes but slept better.

Shortly after 6 Sadbh was wide awake and ready for Katie.

After unhooking all her equipment we headed up to Katie and Sadbh was thrilled to snuggle with her.

She was so much fun and very playful as we hung out in bed for another hour or so.

Sadbh was in for a big treat today as her friend Clodagh was celebrating her 4^th birthday. There was even a band playing and Sadbh was dancing like a rock star. She had a wonderful time with all her friends and did a great job keeping up with everyone.

Both Katie and I kept our eyes peeled for other kids with colds or coughs and kept Sadbh clear from any possible germs as much as we could.

It sucks having to be like this but since Sadbh is so susceptible to colds and infections we have no other choice.

All the excitement of the morning’s events wiped Sadbh out and she was ready for her nap when we arrived home. Bath time was fun and Sadbh really enjoyed splashing up the place.

Trach care went well but Sadbh only slept for 25 minutes. She was a little sluggish when she woke up but as soon as Katie arrived on the scene she quickly perked up.

Before lunch she got to see our next-door neighbor, Anna, and her dog. Sadbh could not stop rubbing Caushie’s head and ears and you could tell that Caushie really enjoyed it.

Katie and I had a Guild meeting for Children’s Hospital this evening so Nana and Granddad watched Sadbh and put her to bed.

New photos.

Photos from March 9 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 8th 2013

Sadbh had a restless night and woke up in a great mood at 6. She was very playful and full of smiles.

You could tell that she was very comfortable in her bed as she was very happy just lying there.

It was a beautiful day but Sadbh did not want to go out at first. After a little persuasion she headed out with Nana and Granddad and ended up really enjoying herself.

When it came time for trach care she was very tired and after her bath it did not take long before she was fast asleep.

Nana and Granddad managed trach care and thankfully it all went smoothly.

Sadbh slept for over two hours and woke up in a very good mood.

Her friends Conor and Aibhín stopped by for a play date and Sadbh was delighted. She could not stop saying hi to Aibhín despite the fact she was trying to sleep in her carrier.

Sadbh had a wonderful evening and she really enjoyed her friends company. She was quite tired when it came time for bed however she had no interest in going to sleep.

She did great wearing her trach cap today ad tolerated it for a few hours.

New photos.

Photos from March 8 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 7th 2013

Sadbh tolerated 33 minutes with her trach capped during the night and according to Larissa she remained relaxed and comfortable the first couple of times.

On the third try she got a little bit fussy but still stayed asleep.

She woke up around 6:20 and was in a very good mood.

After catching up with her favorite show, Kipper, Sadbh headed downstairs with Katie for breakfast. She had a big appetite and ate her fair share of breakfast.

When Nana joined in for breakfast Sadbh ate most of her porridge. She’s quite the cheeky monkey.

Trach care was easy today as Sadbh was very tired. She slept for almost three hours and woke up in a great mood.

Unfortunately, she missed Ali-Baba as she had stopped by while Sadbh was sleeping.

Sadbh got to meet a new potential nanny this evening but she really wanted Katie all to herself. It was very difficult for Sadbh as she had not seen Katie since this morning, however, Nana and Granddad came to the rescue and distracted Sadbh long enough for Katie and I to interview the nanny.

Granddad received a new motorcycle helmet in the post today and Sadbh was over the moon when it came out of it’s packaging. She had to try it on but after a while she must have felt claustrophobic.

Sadbh had a huge appetite for dinner and after she was done with her food she came around the table to each of us and started eating form our plates. After that she topped it off with yogurt. I have no idea where she puts it all but it’s good to see such a healthy appetite.

When it came time for bed Sadbh put on a new show with her binkys. She stuck a couple between her toes and started to do the bicycle. I have a strong feeling that she will be a performer with Cirque du Soleil when she’s older.

This morning as I packed my lunch I noticed that yet another apple had a big bruise in it. Every apple that I’ve had throughout the week has had a similar bruise and then I realized it was from Sadbh bouncing the bag of apples along the ground as she helped unload the groceries earlier in the week.

New photos.

Photos from March 7 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 6th 2013

Sadbh had a very restless night so Larissa decided not to cap her trach allowing her to sleep as comfortably as possible.

Thankfully, she slept through the night and woke up just after Larissa’s shift ended.

As usual she was thrilled to see Katie and for the fun and games to start. When she woke up, Katie mentioned to her that Ali-Baba might stop by to play.  Sadbh promptly requested for her wires, tubes and sleep sack to be removed and insisted on looking for Ali-Baba throughout the house.  Unfortunately, Ali-Baba hadn’t arrived yet, so Sadbh couldn’t find her.

Ali-Baba did stop by later in the morning, however, and Sadbh was delighted to see her. They had a great time playing and Ali-Baba wiped Sadbh out in time for trach care.

Sadbh slept for an hour and a half and woke up hungry and ready for the games to start again.

The weather was terrible so Sadbh was house bound all day. She did not seem to mind as she had so many toys out and was enjoying all of them.

After I came home from work she had me chasing her around the house. She was running like crazy and did not stop for ages. Since the hole in her trach is so small, 3mm, it was interesting to see her go for so long and not run out of breath.

After dinner Sadbh was exhausted and wanted to go to bed. It was hard to get her pajamas on as she was so floppy and wiggly, but as soon as she settled down it was not long before she was fast asleep.

She wore her trach cap for a total of 2 hours and 2 minutes throughout the day today.

New photos.

Photos from March 6 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – March 5th 2013

Sadbh did great during the night and wore her cap for 29 minutes in total. Her heart rate and blood oxygen levels stayed where they should have and despite getting a little bit restless she did not wake up.

By 6:20 Sadbh was wide-awake and ready to kick start her day. She was in a very good mood and could not wait for Katie to take her upstairs so she could watch her iPad as Katie got ready for work. She’s really getting used to her morning routine.

She had a wonderful morning and despite the dry weather she did not want to go out. She preferred staying inside playing with her toys.

After a very busy and fun morning Sadbh started to get tired shortly after noon and by 12:30 she was fast asleep and ready for trach care.

Granddad and Nana managed trach care and Sadbh slept soundly for a couple more hours.

Sadbh woke up in a happy mood and hungry for dinner.

Once her belly was full, it was time to head out for a walk through the neighborhood. She still did not want to leave the house so Granddad and Nana had to coax her to leave with them. They asked her if she wanted to go find “Kipper”, the little dog on the cartoon that she loves so much.

This backfired later when my folks tried to do some shopping in the local grocery store when Sadbh kept saying “outside, Kipper!” That will teach them.

She had a wonderful evening and actually wore her cap for a total of 4 hours and 20 minutes throughout the day.

New photos.

Photos from March 5 2012.

All the best,

Wayne, Katie and Sadbh.