Sadbh’s update – May 31st 2013

Sadbh woke up shortly after 11:30 and was asking Helen for Katie. Helen did a great job in getting Sadbh back to sleep, first negotiating with her and then letting her listen to Wheels on the Bus from Helen’s laptop as she drifted back to sleep.  The rest of the night was very uneventful.

Sadbh slept until just after 7am and when she woke up, she wanted to eat Katie’s oat bran cereal (the kind that Grandad always ate).  She asked to wear her cap first thing and she spent the first hour of the day playing around upstairs while Katie got ready for work.

Ali-Baba stopped by around 9 and Sadbh was so happy to see her. She again asked to wear her cap and wanted to show off for Ali-Baba.

They all headed downstairs for a tea party and to play with Sadbh’s kitchen in the basement.  After a late morning snack Sadbh got to watch The Sound of Music and have a sing-a-long with Ali-Baba. She also got to help Ali-Baba with her knitting and showed her how she can brush her teeth.  She had a wonderful time and loved every second.

Trach care went well today, even with Sadbh awake throughout. She fell asleep afterwards and slept soundly for a couple of hours.

She was in a fantastic mood all afternoon and even got out for a walk through the neighborhood.

Just after I arrived home she picked out her sailor suit and asked if she could wear it. I was able to bribe her into wearing her cap. She looked adorable and loved walking around the house.

Bedtime was very easy tonight since Sadbh was pooped. She had a fun filled evening and just before going to sleep we gave her a saline nebulizer to loosen up her airway.

It worked great and I was able to suction her trach clear of dried secretions.

She wore her cap for almost five hours total today over five sessions. We were all really impressed and hope that she will continue to tolerate her cap for longer periods from now on.

New photos.

Photos from May 31 2011.

Photos from May 31 2012.

Sadbh’s update – May 30th 2013

Sadbh had a much better night and did not move all night. She woke up in a great mood and was ready to take on the day.

Sadbh had a busy morning and had a lot of fun with Amy and Larissa.

When it came time for trach care she was very cooperative and allowed Larissa and Amy to take care of business without any issues.

She napped for two hours afterwards.

The weather had improved so Sadbh, her doll Annabelle, Amy and Larissa all went for a walk. Sadbh was so happy to be outside in the fresh air and could not stop smiling.

When Larissa and Amy were getting ready to leave, Sadbh came running up and gave them each a big kiss and a hug. It was very sweet.

The rest of her evening was spent dancing around the living room and having fun.

When it came time for bed we gave Sadbh a saline nebulizer, as her trach was very dry.

It took ages for Sadbh to go to sleep

New photos.

Photos from May 30 2011.

Photos from May 30 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 29th 2013

Sadbh had a restless night and seemed to be having a lot of intense dreams.

Helen had to suction once but was unable to fully clear Sadbh’s airway. Nevertheless, Sadbh had no issue breathing and she slept on for another few hours before waking up.

She woke up to the sound of her Oximeter alarm going off and as soon as she saw Katie she asked to go shopping.

Once she was unhooked from all her equipment she headed to the back door to put on her jacket, hat, glove and boots as if to head out to the shops.

Amy could not work today so Sadbh had Larissa all to herself.

Sadbh was not in the mood for a big breakfast so both she and Larissa had a very lazy morning playing with two of Sadbh’s dolls that she has named Fionn and Annabelle after her new twin cousins. Coincidentally, it turns out that her doll has her name Annabelle embroidered into her pajamas.

After a busy morning playing with her two dolls Sadbh ate some breakfast and eventually got dressed.

Sadbh and Larissa had a lot of fun running around in circles and every so often Sadbh would check in on the babies. She was wearing her cap the entire time.

Finally she got fed up and pulled the cap off.

She was soon pleading with Larissa to play with her bath toys and was making bargains about wearing her cap.

Sadbh was very happy wearing her cap and playing with bath toys until twenty minutes later she had a disagreement over soap, which ended her fun.

It all worked out fine as it was time for Sadbh bath. She was soon running around the house in the buff while Larissa got her bath set up. Sadbh loves to be naked.

When it came to her nap she tried to trick Larissa by pretending to be asleep however, she was obviously tired as she soon fell asleep.

Sadbh slept for an hour and a half and wanted to cuddle after waking up. She was very chatty but did not make a lot of sense.

She did not have much of an appetite earlier on in the day but made up for it during lunch. She ate so much food and kept asking for more.

Earlier in the day Larissa made her a treat but since she did not want it Larissa placed it in the freezer for later. Sadbh gobbled it up quickly and insisted on more. It did not matter that it was frozen.

When it came time for Larissa to leave Sadbh came running up to give her a big hug and a kiss. She managed to get a couple of hugs and kisses before Larissa finally left and Sadbh was soon running around the house playing with her dolls again.

We were playing hide and seek when Katie arrived home. Sadbh was over the moon to hear Katie’s keys at the front door and was soon scrambling to greet her.

We had to manage trach care this evening and thankfully Sadbh was very corporative.

It did not take us long and after some kisses and cuddles Sadbh was soon fast asleep.

New photos.

Photos from May 29 2011.

Photos from May 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 28th 2013

Sadbh had a beautiful night and slept soundly until 6:30.

Helen mentioned that Sadbh’s lungs sounded really good and she did not have to suction.

She did not have much of an appetite today and did not eat much. She did drink a lot of water and kept well hydrated throughout the day.

Sadbh got to Skype with Nana and Granddad this morning for almost an hour and she even brought them for a tour around the house.

She kept asking to see more photos of her new cousins, Annabelle and Fionn.

The rest of her morning was spent finger painting.

Trach care went well and Sadbh was very relaxed throughout. As soon as they were finished she hit the sack for a couple of hours.

The weather was still bad so Sadbh did not get to go outside. Instead Amy and Larissa kept her entertained playing with her bath toys in the water and also playing with bubbles.

We received the follow up letter from the insurance company with their conclusion on the nursing coverage. Apparently their ENT doctor, Dr. Raye McIntee, went to a far better university than Dr, Inglis and I wish we had received Dr. Raye McIntee’s expert opinion two years ago so both Katie and I would have saved ourselves unnecessary worry and stress over Sadbh’s condition.

According to Dr. McIntee Sadbh does not need any professional help and that “she will be able to tolerate mucous obstruction/decannulation for the period of time it would take for the family or other trained, non-licensed, caregiver to suction/replace trach.”

We have already started researching attorneys so we can continue to fight this decision. Little do they know but Katie and I are two very stubborn people and we will put up a huge fight for Sadbh’s wellbeing.

New photos.

Photos from May 28 2011.

Photos from May 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 27th 2013

Sadbh had a great night sleep and did not wake until 7. Larissa took over from Helen at 6 and once Sadbh was awake it was time for the day to start.

Thankfully Sadbh’s lungs sounded good and she did not require any suctioning.

The weather was miserable so Sadbh was housebound for the day. Not to worry, she had plenty to do to keep her occupied and entertained.

When it came time for trach care Sadbh kicked back and enjoyed watching the same music videos as yesterday while Larissa held and Katie cleaned her trach and neck.

She would not go to sleep afterwards and she ended up quite delirious after a couple of hours.

I had to run to the shops to get the groceries for the week so we packed up all her equipment and all three of us headed out for a spin.

Sadbh fell asleep soon after so once we had the shopping done we parked the car at Volunteer Park and hung out while Sadbh slept on for an hour.

Sadbh’s two new cousins, Fionn and Annabella, were born today and Sadbh could not stop checking out their photos. She kept trying to kiss them and you could tell that she is eager to meet them as soon as possible. Congratulations Ann and Ger!

New photos.

Photos from May 27 2011.

Photos from May 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 26th 2013

Sadbh woke up at 6:24 and immediately instructed me to get up because she was hungry. She had a very restful night and did not need to be suctioned whatsoever. Danielle tried to cap Sadbh’s trach but was unsuccessful.

Sadbh and I hung out for a couple of hours eating breakfast and playing before Katie came down.

It was a very wet morning but we were determined to make the most of the day.

After a nice bath Sadbh allowed us to do trach care and she was very relaxed watching Julie Garland singing “Somewhere over the rainbow” from The Wizard of Oz. She watched it a few times before getting bored and then we switched it over to Iz singing his version of it.

Thankfully trach care went well so we packed up all of Sadbh’s equipment and headed over to Ballard to check out the farmers market.

It was the first time in ages that we were out of the house so early and Sadbh was in a fantastic mood.

The weather started to clear when we arrived and the place was mobbed. A street busker entertained Sadbh and she danced along to the music.

Soon we meet up with Ali-Baba and Kirk and Sadbh was off up the street holding Ali-Baba’s hand.

Along the way Sadbh, Katie and Ali-Baba stopped off in a toy store where Sadbh found a cool xylophone. She started playing around with it and instantly made some really pleasant sounds, almost as if she knew what she was doing.

Unfortunately, I was outside looking after the stroller and her equipment so I missed out on the musical extravaganza, however Katie managed to video record her performance.

By the time we were done at the market Sadbh was starting to get tired. We hoped that she would nap in her stroller but she was too excited so we headed off for a spin in the car.  

Together with Ali-Baba, we drove up to “The Bluff” above Sunset Hill overlooking the water.  Sadbh ran around on the grass, picking little daisies and watching airplanes and boats go by.

After we took Ali-Baba home, we headed over to Fremont to check out the market there. We hoped she would doze off in the car, but she had no intention.  By now, Sadbh was very cranky and we could not do anything to keep her happy. She even lost one of her binkies in the canal and she looked in horror as it sank below the surface.

We had a few back up binkies so she did not have to worry for long.

Our efforts to get her to sleep were failing so we again loaded up the car to head home. Within a few seconds of starting the car she was in a deep sleep so we headed back to Ballard to get something to eat.

We found a nice quite restaurant and ordered our food. But wouldn’t you know it, as soon as the food arrived, so did Princess Angry Bird, and she was furious. There was nothing we could do to cheer her up and it took almost thirty minutes before she clamed down.

She made friends with a young woman at the next table. She was full of smiles and chatter and at one point she said “I’m all better, I see Dr. Inglis”.

The woman had no idea what Sadbh was talking about, but Sadbh kept on talking to her and was finally in a good mood.

Things only got better when Cormac and Clodagh stopped by with Derek. Sadbh was so excited to see her friends.

They were meeting up with Aidan, Dee and Brian up the street for pizza so we all headed out to meet up with the gang.

The kids all had a great time and had fun dancing and greeting all the other patrons as they came into the restaurant.

Sadbh wore her trach cap the entire time she was hanging out with her friends and she acted as if she did not have it on.

When it came time to leave Sadbh looked very sad.

Just before bedtime she had a yogurt and immediately starting to play with her food. Using her spoon she started to cover her fingers in yogurt claiming that she was “finger painting”. I think she got the concept of finger paining mixed up somehow, although it was quite insightful of her nevertheless.

Bedtime was very easy tonight and Sadbh put herself to sleep. She was fast asleep moments after putting her head down so we tried capping her trach to see how she would do.

New photos.

Photos from May 26 2011.

Photos from May 26 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 25th 2013

Sadbh woke up just after Danielle left and just as Katie was about to lie down on the chair next to Sadbh’s bed. She was eager to start the day and kept saying “Mommy get up” and was not satisfied until Katie got up.  She had a quick breakfast and then it was time to get busy playing hide and seek.

After a fun morning she grew very tired. She did not want us to do trach care and started to grab her trach to pull off the artificial nose. She kept doing it and it resulted in stressing all three of us out.

Thankfully Katie and I were able to calm her down and gave her a nice relaxing bath. She was fast asleep soon afterwards so Katie and I got stuck into trach care and once we finished up Sadbh slept on for an hour and a half.

The sun came out this afternoon so we headed off to the zoo. Sadbh was over the moon and could not wait to see the lions.

We first stopped off to see the penguins but Sadbh seemed more interested in the water fountain next to their enclosure.

After checking out the penguins and the adjacent fountain it was time to visit the otters. She loves otters lately so she was excited to see them.

On the way to the lions we came across two giraffes that were eating their dinner. She was afraid of them but did not want to leave. She seemed fascinated.

Next we stopped by the lions and Sadbh was excited to see the mother lion with her cubs.

She would not wear her cap so we had to bribe her. The only way she was going to see the elephants and monkeys was if she wore her trach cap. It worked and soon she was waving at the elephants and imitating their sounds.

When the elephants headed off around the corner out of sight, Sadbh turned to Katie and with her hands in the air she asked, “Where are my elephants?”.

It was very funny and extremely cute.

The rest of the visit was fun and Sadbh even got to check out the carousel where she freaked out the last time she was there with Granddad.

On the way home we stopped off for some sushi. It was one of those restaurants where the food goes by on a conveyor belt in front of you.

Sadbh was very hungry so we picked some good food for her to eat. Unfortunately, when the cup cakes went by Sadbh lost interest in what was on her plate and demanded a cup cake.

She would calm down after a few minutes but then get upset when the cup cakes came around again.

Needless to say it, was not a very relaxing dining experience so we finished up quickly and headed home.

The rest of Sadbh’s evening was fun and when it came time for bed she was wiped out. Katie and I gave her a saline nebulizer to help clear her lungs and soon she was fast asleep.

New photos.

Photos from May 25 2011.

Photos from May 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 24th 2013

Sadbh slept well but woke up upset a few times during the night. Helen was able to comfort her back to sleep easily and Sadbh slept on until 6:15.

She was delighted to see Katie and knew it was time for a big snuggle.

When Sadbh headed upstairs with Katie she brought a whole new group of friends. She brought two tigers, a cat and her kitten, a bear, a bunny and a green “Kipper” dog (with a nappy on). She was in her element hanging out while Katie got ready for work.

She even got to watch some monster truck racing.

The weather cleared later in the morning so Sadbh, Larissa and Amy headed out to play in the garden.

She was so happy to get out of the house since she has been cooped up all week.

Things got very exciting when Sadbh spotted a garter snake slithering through the grass. Despite her excitement she had no desire to stick around to check the snake out.

It was soon time for trach care but Sadbh was too wound up to stay still for trach care. Larissa and Amy did not want to run the risk of decannulation so they put Sadbh to bed where she soon fell into a deep sleep for two hours.

When Sadbh awoke Larissa noticed that she had a temperature. Sadbh was very fussy and extremely clingy.

Shortly after I arrived home Sadbh was busy in her room playing with one of her dolls. All of a sudden she kept closing her bedroom door and when I popped my head in she started acting very suspicious. I noticed that she was putting one of three nappies on her doll and that her hands and the dolls bum were covered in Sadbh’s butt paste.

Just before dinner Sadbh got to Skype with Nana and Granddad and she was busy blowing them kisses and telling them that she loved them.

Thankfully, by bedtime she was feeling much better and her temperature seemed normal. I have a feeling that the last of her teeth are coming through and this could be the source of her discomfort and higher than normal temperature.

As we were getting Sadbh ready for bed she kept telling us that she did not want trach care so after inspecting her neck and cleaning a couple of spots that needed cleaning we decided to forego it for today. We will manage it first thing in the morning after she wakes up instead.

We received news from the insurance company that they have declined our second appeal so our next step is to seek legal counsel. The fun never ends.

New photos.

Photos from May 24 2011.

Photos from May 24 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 23rd 2013

Sadbh must have had some interesting dreams last night as she was very active and had an irregular respiratory rate for a few hours.

She was sad when she first woke up but was very happy when Katie popped her head into the room.

Sadbh was in a great mood all morning.  Amy made pancakes and Sadbh ate them down with some milk.

The weather wasn’t great today so they played inside and read lots of stories. At After a large snack, they started the trach care routine and Sadbh wore her cap in the bath. 

Sadbh’s lungs are still sounding quite wheezy so they did an Albuterol treatment followed by a saline nebulizer treatment.  Sadbh listened to Winnie the Poo during trach care and she did great.  By 12:15, she was fast asleep and she slept for 2 hours. 

When she woke up, she had a nice big dinner of broccoli, egg and apples.  After some more playing, they did another Albuterol and saline treatment.

Shortly after I arrived home, uncle Neil stopped by for a visit.  Sadbh was delighted to see him and she continued to put on a show for him for the entire evening.

Sadbh had no intention of going to sleep tonight and she rolled and sang and laughed for almost two hours before finally falling asleep in my arms.   

New photos.

Photos from May 23 2011.

Photos from May 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 22nd 2013

Before Sadbh went to bed last night we gave her a homeopathic remedy of Pulsatilla 200. Apparently she had a somewhat ok sleep but woke up trembling a few times during the night. Each time she dropped back to sleep after being comforted by Helen and ended up sleeping until shortly before 7am.  She was quite happy lying in her bed for a while by herself and after about 15 minutes, she finally called out for “mammy”.

Sadbh had a very busy morning and after breakfast she helped Amy and Larissa to bake cookies. Unfortunately, they burned a few but were able to produce a tasty batch for everyone to enjoy.

Soon it was time for Sadbh’s bath and after she was dried off she allowed Larissa and Amy to carry out trach care. They seem to have gotten the routine down quite well and as long as Sadbh cooperates everything goes well.

She slept for almost two and a half hours and woke up hungry for cookies.

After a big lunch she received a cookie for desert and was so pleased with herself.

The evening was playing hide and seek and running around with only one sock on. Occasionally she would take off running through the house only to hide behind one of the chairs in the dining room. When I would ask “where is Sadbh”, she would answer “I’m hiding” even though I was in the room looking for her. It was so funny to watch her scurry away each time.

Bedtime took forever and she had no interest in going to sleep. She was extremely chatty and came up with every excuse in the book not to go to sleep.

New photos.

Photos from May 22 2011.

Photos from May 22 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – May 21st 2013

It was yet another uneventful night for Sadbh and Helen and Sadbh woke up well rested just after Helen’s shift ended.

Her lungs sounded good for the most part despite still having a few secretions rattling away in there.

Katie wasn’t feeling great today and had a raspy, sore throat. Fearing that she was starting to develop a cold she decided to work from home in the hopes to fight whatever it was that she was coming down with.

Sadbh was delighted that Katie was home but soon was annoyed when Katie wasn’t hanging around to play.

Trach care went well today and after they finished up Sadbh was ready for her nap.

Sadbh got upset later on when she couldn’t hang out with mommy so Larissa and Amy quickly created a diversion and packed Sadbh’s things to head out for a walk. The diversion worked well and Sadbh enjoyed getting out of the house for a while. It was short lived as the heavens opened up causing Larissa and Amy to make a fast retreat to the house.

Thankfully they did not get too wet.

Sadbh was in great spirits for the rest of the day and was especially happy when mommy appeared later on. Katie was felling a little bit better so she joined in on the fun.

Sadbh was busy coloring with her crayons when she spotted Katie’s iPhone on the table next to her. She turned on the screen saver and with a huge smile on her face asked” who’s that?” and then followed up with “it’s Sadbhie” while looking at a photo of herself on her trike in the driveway. She had the biggest grin on her face and she had both Katie and myself in stitches laughing.

Later on she sang over the phone to my Sister in New Zealand and when it came time to say goodbye she gave the phone a huge kiss.

New photos.

Photos from May 21 2011.

Photos from May 21 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 20th 2013

Sadbh slept like a log but would not allow Helen to put her trach cap on.

She was a little tangled up in her cords when I stopped in this morning so I quickly untangled her before heading off to work.

Katie took over from Helen at 6 and Sadbh woke up just as Helen was leaving.

She was delighted to see Katie and immediately got to cuddle for a while.  

When it came time for Katie to leave Sadbh got upset and did not want her to go.

She was very clingy and did not want anyone else around.

Eventually she calmed down as Larissa and Amy took her out for a walk at the same time that Katie left for work.

It was a pleasant morning so they headed off to the Seattle U campus. Sadbh had a great time picking daisies.

Sadbh had her bath not long after arriving home and soon afterwards Larissa and Amy carried out trach care. Immediately afterwards she fell fast asleep and Sadbh slept for almost two hours.

She was in a great mood when she woke up and after a big lunch it was off out to enjoy the fresh air and sunshine.

This time they headed in the direction of the chickens and Sadbh was delighted with herself.

After Katie and I arrived home we loaded up Sadbh red wagon and towed her around the neighborhood. She loved it but refused to have anything inside the wagon but herself. As a result Katie and I had to carry all her equipment while she rode around like royalty.

New photos.

Photos from May 20 2011.

Photos from May 20 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 19th 2013

Sadbh didn’t do as well with her trach cap last night but she did have a great night sleep.

I took over from Danielle at 6 and Sadbh slept for another 30 minutes.

She was in a good mood but wanted Katie. We decided to let mommy sleep in so Sadbh and I headed into the kitchen for breakfast. She had a mighty appetite and was very happy eating breakfast and watching Kipper.

Later Sadbh and I headed up to Café Presse to meet my friend Marcus. Sadbh was very shy but extremely flirtatious.  She was very well behaved and was happy hanging out while Marcus and I chatted.

Once we finished up at Care Presse we headed over to the Seattle U campus so Sadbh could check out the ducks in the pond outside her favorite church. She was so excited she almost jumped in after them.

She made up for sitting so calmly in the restaurant by chasing as many birds through the park as she could. She had a wonderful time and when it came time to say good-bye to Marcus she gave him a big hug and a few kisses.

Sadbh was delighted when we got home to mommy. Despite all the running around she still had a load of energy to burn off.

It was getting close to her naptime so we gave her a bath and got her ready for trach care. She did not want to sleep nor did she want us to manage trach care. We convinced her to play along but this meant that we could not swaddle her. She was a star and allowed us to take care of business without any problems.

As soon as we were done she dropped off to sleep and did not wake for an hour and a half.

Ali-Baba and Kirk arrived just before Sadbh woke up and she was delighted to see them.

It was time for lunch and as soon as she was done we all headed out in to the garden to take care of Sadbh’s plants.

She was in her element and was very excited when she saw Pat and Anna next door.

Just when she thought that things could not get any better, Nana and Granddad Skyped from back home. She was so happy to see them and at one point she went right up to the iPad and told them that she missed them.

It was very emotional and extremely sweet.

Later in the evening we headed up to Capitol Hill to get the shopping for the week and Sadbh had a lot of fun sitting up on mommy’s shoulders.

When we arrived home Sadbh headed straight into her room and after collecting a few medical items she started managing trach care on one of her dolls.

Bedtime was easy tonight as Sadbh was wrecked tired and fast asleep within 20 minutes.

New photos.

Photos from May 19 2011.

Photos from May 19 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 18th 2013

Sadbh slept great and even tolerated her trach cap for 45 minutes.

When Katie arrived down at 6 she found Sadbh and Danielle hanging out chatting. Danielle was showing Sadbh photos of her daughter and Sadbh was in a great mood.

Her lungs sounded better than the evening before so we think she is in good shape and not developing a cold.

She had a big breakfast and could not wait to wake me up. She kept asking to Skype with Nana and Granddad and when we finally connected with them she was over the moon. They were visiting my aunt Joan so Sadbh got to chat with everyone. She even sang a few of her favorite songs for them all.

We all had a fun morning and when it came time for trach care Sadbh was a star. She laid there watching Kipper while Katie and I managed trach care.

Soon she was sleeping her head off.

Katie’s company party was on tonight so I stayed home with Sadbh. It was a pleasant evening so Sadbh and I headed up to Capitol Hill for a nice long walk. She was determined to walk most of the way but refused to hold my hand. Every time I asked her to hold my hand she would respond with “I will hold Sadbh’s hand” and with a huge grin she would lock her hands together.

Bedtime was quite easy tonight as she was very tired from all the walking. Both of us fell asleep as I was rocking her to sleep.

It was the perfect ending to a wonderful day.

New photos.

Photos from May 18 2011.

Photos from May 18 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 17th 2013

Sadbh slept much better last night and did not budge until shortly after 6 when Katie took over from Helen.

She had a great morning hanging out with Katie and when it came time to head upstairs she insisted on bringing all her dolls and stuffed animals. Katie had to carry quite the load but it was worth it since Sadbh was so happy.

Sadbh arranged all her friends around her so she could keep an eye on them while she watched Kipper. She placed her milk bottle to the side and explained to Katie that it was her “coffee”.

She did not have much of an appetite and later in the morning her lungs started to sound congested again.

Larissa gave her a nebulizer of Albuterol to help open up her lungs.

After a busy morning it was time for trach care and a nap. Trach care went well and Sadbh was soon sleeping her little head off. Unfortunately, she only slept for 45 minutes and really did not sleep well. Her heart rate was much higher than usual however her temperature was ok.

She was very fussy and quite clingy for the rest of the day and did not have a big appetite.

By dinner-time she was very hungry and made up for the lack of eating throughout the day.

By bedtime she was very tired so we gave her a nebulizer with saline solution to help humidify her airway and soon Sadbh was cuddled up with Katie while dozing off to sleep.

I hope she is not coming down with another cold and that she will feel better tomorrow.

New photos.

Photos from May 17 2011.

Photos from May 17 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 16th 2013

Sadbh had a very restless night and woke up very upset at 4. She finally dropped back to sleep at 5 and slept soundly for another hour and a half.

Thankfully she was in a great mood when she woke up and asked Katie to call me at work.

It was a treat for me especially when she told me that she loved me and I could hear her kissing the phone before she accidently hung up the phone.

She had a great morning with Amy and Larissa and when it came time for trach care Sadbh was very corporative. Trach care went well and Sadbh fell into a deep sleep immediately afterwards.

After lunch Sadbh and her posse headed out for a walk. It had turned out to be a lovely day and Sadbh really enjoyed being out and about.

When I arrived home Sadbh and I went out to play in the garden. Sadbh insisted on watering her plants.

We thought Sadbh would be easy to put to bed tonight since she had such a rough night last night and was very tired at bedtime. We were very wrong as Sadbh resisted every attempt to get her to sleep.

Sadbh was finally dozing off in Katie’s arms when suddenly she rolled back, looked up at Katie and said “Granddad”.  Katie said “Granddad?” and Sadbh said “I miss him. It makes me sad”. She put her finger on her face and made the sign for tears.  She then took her binkie out of her mouth and made her sad face (her lips bunched up saying ‘aoouh’.  Then she said “I miss Nana so much”.  Katie couldn’t stop herself from crying either.  It was a very sweet moment.  She is such an amazing 2 year old. 

Two years ago today Sadbh moved out of the NICU, with her brand new trach. 

New photos.

Photos from May 16 2011.

Photos from May 16 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 15th 2013

Sadbh slept great but did not wear her trach cap. She was wide-awake by 6:15 and was very happy to see Katie.

She had an appointment with her homeopathic doctor this morning so Larissa accompanied Katie and Sadbh for the journey.

Krista was surprised that Sadbh’s last remedy did not help with her cold and quick recovery so she is researching for another remedy and hopes to have something for Sadbh in the coming days.

Amy arrived shortly before Sadbh got home and it was all fun and games until naptime.

Sadbh allowed Larissa and Amy to manage trach care and afterwards she went to sleep for a couple of hours.

Sadbh was in for a treat this afternoon when her friend Conor and his baby sister Aibhín. Sadbh was quick to show off her new squeaky shoes and both she and Conor ran a few laps around the house chasing each other. They had a great time and it was so good for Sadbh to catch up with her friends.

Sadbh was exhausted when it came time for bed and wanted to go to sleep by herself at first. Soon she was calling out for Katie and wanted to snuggle before finally falling asleep.

We received word from the insurance company yesterday that our appeal was declined. They claim that Sadbh does not require the skills of a trained nurse so we have filed a second appeal.

Thankfully we were able to get our extension for coverage extended until June 24.

New photos.

Photos from May 15 2011.

Photos from May 15 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 14th 2013

It was a very uneventful night as Sadbh slept like a log. Helen tried to cap her trach a number of times but Sadbh was quick to pull it off each time.

Sadbh was awake by 6:30 and ready for her day. She asked Katie where I was and when Katie told her that I was at work she responded with “oh, that makes me sad”. She wasn’t the one.

Later she kept saying “Mama Mia” and when Katie asked where she got that from she explained “Mama Mia, Gerdie say it”. Then she kept asking to go visit Nana and Gerdie in “Ireland”.

Just as they were about to head upstairs she heard a knock at the door. Sadbh was very surprised to see her old nurse Caity.

Caity was promoted to nurse supervisor a couple of months ago and was assigned to Sadbh. Sadbh was so happy to see her and wanted to play with her throughout her visit.

She kept calling for Caity to follow her so both she and Katie ended up following Sadbh around the house as they got caught up on the paper work and recertifying Sadbh.

Unfortunately, Amy could not work today so Larissa and Sadbh got to spend some good time together.

Sadbh was very upset when Katie left for work but was soon comforted by Larissa and before she knew it they were both having a great time.

Ali-Baba stopped by later on and got to join in on the fun with Sadbh and her toys. They fed Sadbh’s dolls and stuffed animal’s ice cream and cup cakes and soon it was time for her bath and a nap.

She wore her cap for quite some time and eventually did not notice that she was wearing it.

Sadbh slept for a couple of hours and when she woke up she wanted to hang out in her cot for a while.

She had a humongous lunch and ate everything that was put in front of her.

Caity stopped by later in the afternoon to complete some additional paperwork and Sadbh was over the moon yet again.

Trach care started to get stressful this evening when Sadbh started to act up. Initially she was happy to just lie there but soon got very fussy. She would not allow us go near her and after some coaxing she finally calmed down so we could manage trach care.

New photos.

Photos from May 14 2011.

Photos from May 14 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 13th 2013

Monday morning always comes way too soon, however Sadbh had a great night sleep and woke up at 6:15. Helen had tired unsuccessfully to cap her trach a few times.

As Katie and Sadbh headed upstairs so Katie could get ready for work Sadbh wanted to bring her stuffed dog, Regal. She then grabbed her kitty, big bunny, baby bunny, her twin kitties and baby doll. Realizing that her hands were full she gave Katie everything to carry, including herself, and they all headed upstairs.

Sadbh and Katie came back downstairs just as Amy arrived.

Su Jin was covering for Larissa today and Sadbh was happy to see her when she arrived.

It was a wet day but around 9 things were clear enough for Amy and Su Jin to take Sadbh for a walk. She was happy to be out and really enjoyed all the flowers and even a few weeds along the way.

When she arrived home it was time for her bath and afterwards Sadbh allowed Amy and Su Jin to manage trach care. Amy told Sadbh a wonderful story to keep her entertained and it worked a charm.

Sadbh fell fast asleep as soon as trach care was finished and she napped for two hours.

After lunch they were all about to head out for another walk when the weather changed for the worse. A big storm blew in and thankfully Sadbh and her buddies were nice and cozy playing indoors.

Sadbh had a fun evening and we played hide and seek until Katie arrived home.

She was in an excellent mood and she was very mischievous, especially when it came time for dinner.

It did not take long for her to fall asleep when it came time for bed. She was very tired after a fun and exciting day.

New photos.

Photos from May 13 2011.

Photos from May 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 12th 2013

Sadbh slept like a log last night and only got fussy when Danielle tried to put her trach cap on. Needless to say Danielle was unsuccessful and Sadbh slept on without having to wear her cap.

I took over from Danielle at 6 and thankfully Sadbh slept on soundly until 7.

She really wanted Katie but since it was Mother’s Day I had to work hard to keep her quite so Katie could sleep in for a while.

Sadbh was quite hungry so it was off to the kitchen for breakfast. She had a huge appetite and snacked on her food for an hour and a half.

Katie arrived downstairs shortly before 9 and Sadbh was delighted to see her.

We decided to do trach care as soon as possible so we could head out and enjoy the day.

Sadbh was onboard and remained very calm while we took care of business.

We headed over to Ballard to see Ali-Baba and Kirk and Sadbh was very happy to see them. She got to play with all the toys that Ali-Baba keeps for her and even got to see their dog, Phoebe.

Ali-Baba has been sorting through old family pictures currently and when Sadbh saw an old picture of a young Ali-Baba her response was priceless.  She grabbed the picture from Katie and walking towards Ali-Baba she said “Oh my gosh, Ali-Baba, oh my gosh” and she laughed and laughed.  It was hilarious.

We took a stroll through the Ballard market and despite all the activities going on Sadbh was soon fast asleep in her stroller. She snoozed for almost an hour until a screaming kid woke her up.

The rest of her evening was spent having fun at home and getting up to all sorts of mischief.

We thought it would be easy to get her to bed tonight but she was very giddy and used every trick in the book to stay up. She even started to ask to be suctioned despite the fact that she did not need one.  “Just one suction” she said as she looked coyly up at Katie.

New photos.

Photos from May 12 2011.

Photos from May 12 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 11th 2013

Sadbh slept well but did not tolerate wearing her trach cap each time Danielle put it on.

She woke up at 7 in a wonderful mood and was ready to get her day started.

She had a fantastic day overall and got to Skype with Nana, Granddad and my aunt Josie back in Cork.

After a busy morning she slept right through trach change, which was great as both Katie and I were nervous that she would not sleep.

Sadbh was in great form all day long.  She loved talking to our neighbors, Charlie, Pat and Anna and she had a fantastic time playing outside in the warm weather.

After she woke up we headed up to Capitol Hill for dinner and some ice cream and Sadbh was extremely well behaved.

We all had a brilliant day and when it came time for bed Sadbh was exhausted.

New photos.

Photos from May 11 2011.

Photos from May 11 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 10th 2013

Sadbh slept lightly for the first part of the night and was tossing and turning the whole time.

Helen tried to cap her trach but every time she would get it on Sadbh would pull it off instantly.

By 4 she was finally falling into a deep sleep and was getting the rest that she deserved.

Her lungs were sounding a little goopy however she is definitely improving by the day.

Not long after Helen’s shift ended Sadbh was up and ready to get the day started.

She had a huge breakfast and later in the morning she headed off to the Seattle University campus to check out the dogs and to hang out in the gardens there.

Trach care went well even though Sadbh was awake the whole time. She got a little restless and wanted Amy to tell her a different story.  At one point, she looked up at Larissa and asked her if they were done.

Afterwards she wanted to be placed into her cot where she fell into a deep sleep for two hours.

For lunch she ate like a queen. Before Nana left she baked a big batch of scones and froze them. Sadbh devoured one during lunch and wanted more.

After Katie arrived home we loaded up the stroller, put a cap on Sadbh trach and headed up to Capitol Hill. We promised her ice cream if she kept the cap on and it worked. She tolerated it for just over an hour so she deserved to be treated to a nice dessert.   We ended up getting her frozen custard and she was delighted.

It was a lovely evening to be out walking and by the time we got home it was well past Sadbh’s bedtime. She was very cuddly as we got her ready for bed and was fast asleep in no time.

All in all Sadbh managed to wear her cap for three hours today over a number of sessions. Her progress is slow and the cold she is getting over definitely set her back quite a bit. Thankfully everyone is dedicated to getting her back on track.

We are still waiting to hear back from the insurance company on how our appeal is going.

Sadly Amy handed in her notice today and will be finishing up in four weeks.

The race is now on to find a replacement in time for her departure.

Just when things were going smooth. Typical.

New photos.

Photos from May 10 2011.

Photos from May 10 2012.

Have a lovely weekend,

Wayne, Katie and Sadbh. 

Sadbh’s update – May 9th 2013

Sadbh slept great and her lungs sounded quite good. She is definitely improving but she is still not yet 100%

By 6:20 she was wide-awake and in a fantastic mood. Later she was asking for Nini and had a sad face when she realized that Nini was gone.

She had a great day with Amy and Larissa and when it came time for her nap she allowed them both to manage trach care while she was awake.

As soon as she was done she wanted to be put in her cot where she fell asleep for over two hours.

It was quite the accomplishment for everyone involved.

The rest of her evening was spent playing and eating. She can put away a serious amount of food and I often wonder where it goes.

Getting Sadbh to sleep took a little effort this evening as she was extremely playful and had no interest in going to sleep.

Eventually she dozed off around 9pm.

She managed to tolerate wearing her cap for over two hours today over a few sessions. One of those sessions lasted an hour so we are hoping that she will continue to wear her cap for longer periods of time.

This day two years ago Sadbh was trached. It was one of the most difficult decisions both Katie and I had ever made and despite all the challenges over the past two years we know it was the best thing we ever did.

At times it feels like a million years ago and other times it feels like it was just yesterday.

I’m just so lucky to have two amazing women in my life and between the three of us we help each other get through it all.

New photos.

Photos from May 9 2011.

Photos from May 9 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 8th 2013

According to Sadbh’s night nurse, Helen, she had a fantastic night. She hardly moved all night, she did not need to be suctioned and her lungs sounded good.

Sadbh woke not long after Helen’s shift ended at 6:15 and immediately wanted Katie to head upstairs to take a shower.

After breakfast Nini gave Sadbh Albuterol by nebulizer and Sadbh got to catch up on some of her favorite cartoons on her iPad.

As soon as she was done with her treatment it was time to have some fun with Nini before she headed to the airport.

Sadbh was very sad to see her leave and gave Nini a lot of hugs and kisses.

When it came time for trach care Sadbh was in a nice deep sleep. Larissa and Amy were just about to start when Sadbh woke up and got very fussy.

They decided to forego trach care and were eventually able to get her back to sleep.

She woke up an hour later and declared that she was hungry. After a big feed it was time for the fun and games to commence.

She even got a chance to go out and water her plants.

Overall Sadbh had a great day and allowed Katie and I to manage trach care at bedtime with relative ease.

She managed to wear her trach cap for an hour over three sessions during the day but she still has a long way to go to catch up to how well she was doing before she got sick.

We were all sad to see Nini leave today. Often it seems sad that so many people come and go from her life. She is so lucky in so many ways but it is unfortunate that she doesn't get to spend more time with all these wonderful people.

New photos.

Photos from May 8 2011.

Photos from May 8 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 7th 2013

Sadbh had a good night and thankfully it seemed that her lower lobes were sounding less congested that the night prior.

She woke up around 7:20 and was in a very happy mood.

Amy arrived at 8 and Sadbh got stuck into her breakfast. She had a healthy appetite and afterwards the fun and games started.

Larissa was also working today so Sadbh had plenty of company to keep her entertained.

The weather was gorgeous so Sadbh, Amy and Larissa headed out to the Seattle University campus for a walk.

As luck would have it, the lady and her dogs were playing catch in the park so Sadbh got to watch in amazement.

Sadbh arrived home shortly before noon and was ready for her bath. She was fast asleep within the hour so Larissa and Amy got started on trach care. Just as they were removing the trach tie Sadbh woke up and got extremely fussy.

They had to abandon trach care and thankfully managed to get her trach tie secure again.

Sadbh was fast asleep within 15 minutes but trach care was postponed until bedtime tonight.

She slept for over two hours and woke up with a huge poopy nappy and saying that she was hungry.

After cleaning her up it was time for dinner and Sadbh ate like a queen for almost an hour.

She was finishing up just as I arrived home and she came running to the back door to greet me.

As Larissa and Amy were leaving Sadbh went running up to them and gave them each a kiss and a big hug. What a way to end your day’s work.

Sadbh had a wonderful evening and we played non-stop until Nini arrived home. Nini joined in and Sadbh had so much fun.

Katie and I managed trach care tonight while Sadbh was awake. I told her another story about her cousin Zoe and she was hung on to every word.

Everything went well and as we were finishing up she turned towards her bed and said “Oh my god, I’m tired”.

Sadbh managed to wear her cap for a total of an hour today. The first attempt was for 15 minutes and the second for 45 minutes. She still has a lot of secretions but we are hopeful that she is over the worst and on the road to recovery soon. We need to get her back into practicing being capped to see how long she can tolerate it so we can start working towards having her trach removed.

Sadbh’s received her Irish passport today and is officially an Irish citizen in addition to being a US citizen. She looks so cute in her passport photo and we hope that she get’s to use it in the near future.

New photos.

Photos from May 7 2011.

Photos from May 7 2012.

All the best,

Wayne, Katie and Sadbh.