Sadbh’s update – June 30th 2013

Sadbh was quite restless throughout the night but managed to sleep until 7:15. She wanted mommy straight away so we headed upstairs for a quick snuggle before heading back downstairs for breakfast.

Sadbh did not have a big appetite and grazed on her food for a while.

When she was done eating some time later we headed back upstairs to hang out with mommy.

She had a fun morning and got to Skype with Nana and Granddad.

After trach care and her nap she wanted to get out into the garden to play. It was a scorcher of a day but thankfully we had plenty of shade in the back garden.

Sadbh was very busy playing her kitchen and both Katie and I were very surprised with how neat and organized she was.

We had a fun evening playing and when it came time for bed she decided that she was still hungry and insisted on having yogurt.

She gobbled down some banana flavored yogurt but was still not ready to go to sleep.

It took almost an hour and a half to get her to sleep and by the time she finally dozed off she was wiped out, as was mommy.

New photos.

Photos form June 30 2011.

Photos form June 30 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 29th 2013

Sadbh slept great but Danielle had no luck trying to cap her trach. It seems that she can manage it well throughout the day but has no desire to wear it at night.

We decided to give her a break at night for the next couple of weeks.

She woke up just as Danielle left and was quick to help mommy with making breakfast. She even discovered the Taytos (potato chips) that I had brought back from my recent trip home to Cork however, unfortunately for her, she did not get to eat any.

After breakfast we headed to Costco to get a few things and most importantly a photo of Sadbh for her US passport. She was so good posing and we ended up with a great photo.

By the time we arrived home Sadbh started to fall asleep in the car. We carefully moved her into room and set about preparing for trach care.

She slept right through and after we placed her in her cot she slept for another hour.

Uncle Neil came by and as soon as Sadbh was dressed and fed we headed up to Capitol Hill for a walk.

It’s Pride weekend in Seattle this weekend so Sadbh got to join in on the festivities. She had a great time and was thrilled to see all the rainbow flags. She kept saying “its my birthday” and singing “Happy Birthday to Sadbh”.  She also sang the rainbow song a lot “Red and Yellow and Pink and Green, Purple and Orange and Blue”. 

We met up with an old neighbor of Katie’s and he was very excited to meet Sadbh. She even scored a new pair of sunglasses off of Don.

Things got very exciting when a bunch of people started prancing around the park dressed up as unicorns. Sadbh could not believe her eyes and followed them in complete awe.

Soon after she was joined with Dylan, Conor and Aibhin. Now the real fun was about to start and the kids had a fantastic time running, chasing bubbles and hanging out.

Dylan is a few months older than Sadbh and he’s extremely adventurous and has no issues investigating new and interesting things. Sadbh on the other hand is fairly cautious and done not like to get dirty. As a result she was very busy chasing Dylan around with a clean wipe ready to clean his hands or face anytime she felt he needed it.

After hanging out in the park for a while we decided it was time to head off to get some ice cream and cool off. I think Conor was the only kid not to end up with a big mess and Sadbh even needed to change all her clothes she was so messy.

After saying goodbye to everyone it did not take us long to walk home and after a nice bath Sadbh was soon fast asleep.

Not a bad way to end her day and first pride celebration.

New photos.

Photos from June 29 2011.

Photos from June 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 28th 2013

Sadbh slept really well but still would not tolerate wearing her trach cap. She woke up in a great mood not long after Helen left.  She had a nice tea party with Regal in the morning and then insisted on bringing her 3 hats, her sunglasses, her pink bunny, 2 kitties and the tray of cupcakes upstairs while Katie got ready for work.

Once Larissa arrived, she had a nice big breakfast and quickly got stuck into some fun activities as soon as she was done eating.  Larissa and Sadbh then headed out for a nice long walk since the sun was out and the weather was beautiful.

Sadbh had a couple of visitors today. The first was Amy and Sadbh was surprised to see her. They both got to hang out for a short while and when Amy left she was starting to ready for her nap.

Her second visitor was the medical supply company who came by to exchange her Oximeter for a new one because the old one was recalled due to some malfunction or other.

I was able to get out of work a little earlier than usual today so Larissa and I managed trach care. Sadbh was great and watched Fireman Sam as we got it done.

When it came time for Larissa to leave Sadbh gave her a huge hug and a couple of kisses. She loves Larissa a lot and has so much fun with her.

We had a busy evening planned so as soon as Katie arrived home we loaded up the car and hit the road. We ended up in Magnuson Park and Sadbh could not wait to stick her toes in the water. She loved it and had a great time tossing stones into the lake.

It was well past her bedtime by the time we got home so after a quick snack we got her ready for bed. It did not take long before she was fast asleep.

Danielle is working tonight and she is going to try a different tactic to get Sadbh to wear her trach cap tonight.

New photos.

Photos from June 28 2011.

Photos from June 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 27th 2013

Sadbh slept slightly better last night and woke up at 7:30. She was in a wonderful mood and when Larissa arrived she was very happy to see her.

She spent a good part of the morning running around laughing and having a great time.

Sadbh received a visit from her second nanny candidate just before breakfast. She was wearing her trach cap the whole time and Laura had no problem understanding everything she said.

It was a good visit and Sadbh really enjoyed hanging out with Laura.

After Laura left Sadbh and Larissa cranked up the music and had themselves a dance party.

When they were too pooped to dance any more Sadbh crashed out in her recliner and read for a while.

Sadbh was exhausted when it came time for her nap and was out like a light after her bath.

She slept for an hour and fifteen minutes and woke up slowly and very sweaty.

The rest of Sadbh’s day was spent having fun. Katie arrived home a little earlier than usual and Sadbh was delighted to see her.

We were able to manage trach care without any problems and as soon as we were done it was time for dinner.

Sadbh had a good appetite and gobbled up most of her food.

There was a Children’s Hospital guild fund raising event tonight so I stayed home to look after Sadbh while Katie went.

Sadbh was very unhappy that mommy was not there to put her to sleep. It took over an hour and a half to get her to sleep tonight and the whole time she was extremely giddy. Eventually she passed out in my arms.

New photos.

Photos from June 27 2011.

Photos from June 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 26th 2013

Sadbh had another restless night and around 5:30 her blood oxygen level dropped into the 80’s for a few moments causing her Oximeter to alarm. Helen reacted immediately and suctioned Sadbh’s trach. Her blood oxygen level bounced right back up to the high 90’s and Sadbh slept on until 7:30.

She was in a fantastic mood when she woke up however she wanted to lounge in her pajamas for a while before having breakfast.

We received her latest remedy of Ipecacuanha from her homeopathic doctor, Krista.  

Ipecacuanha treats  

·      spasms of vocal cords

·      paralysis of vocal cords

·      vomiting on coughing due to constriction of vocal cords and difficult expulsion of mucous

·      cheerful, mirthful children who can be irritable, with anger followed by tranquility

·      children who can be a bit dictatorial (do this mommy, come here mommy, turning your face to her) at times.

Sadbh get’s excited when she receives her homeopathic remedies since Katie has made a fun game of it. She calls it bird food and Sadbh pretends to be a baby bird being fed. Last night she refused to eat dinner because she wanted her bird food instead.

Sadbh’s appetite came back after receiving her bird food and she devoured a huge breakfast that she picked out herself.  Her breakfast was made up of corn, garbanzo beans, egg and tofu with “yellow sprinkles” (aka nutritional yeast) on top.

Right after breakfast Sadbh and Larissa got down to some serious fun and they started working on a science project.

They started working with dry cornstarch feeling it with their fingers, then adding water and felt it with their fingers until it started to turn to putty, glue and then milk.

They made such a mess but Sadbh had more fun washing everything down. She wore her trach cap the whole time and lasted for three hours and five minutes.

We are so lucky that Larissa is as dedicated as she is to Sadbh’s recovery.

Next it was time for Sadbh to have a bath and soon she was fast asleep in her cot.

She only slept for an hour and a half and was quite restless throughout.

When she woke up she insisted on wearing a pretty dress so she could be like Nini and she was very particular about which dress she wore.

Katie and I arrived home a little earlier than usual, as we had to run some errands together. Sadbh was delighted to be out in the car with us and after we got done we headed over to Gasworks Park for a walk.

Sadbh got very excited when she saw the old turbines and mechanical equipment and even more excited when she saw the Space Needle off in the distance.

She kept saying “Space Needle and the Weedle” from one of her favorite books, The Weedle on the Needle.

She managed to wear her trach cap for another 4 hours in the evening, so her total for the day was over 7 hours!  Now, if only we could get her to wear the cap at night while sleeping.

We were all quite hungry by the time we arrived home. Sadbh had a good dinner and then it was time for her bath and trach care.

She loves trach care these days as she gets a chance to watch “Fireman Sam” while we work on her neck.

She was fast asleep within half an hour and hopefully she will have a much better night sleep tonight.

New photos.

Photos from June 26 2011.

Photos from June 26 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 25th 2013

It was a very restless night for Sadbh and when I popped my head in to see her she shot right up and gave me a big smile before rolling back onto her belly. We thought that she was awake for the day but she was soon back asleep for a little while longer.

She woke up moments after Helen left and was delighted to see mommy.  Soon Sadbh started to complain about her leg being wet and then Katie noticed the biggest blow out she has ever seen. Sadbh’s nappy was not on fully and as a result there was a huge mess all over her room and out into the hallway, the bathroom and the kitchen.

After everyone and everything was cleaned up it was then time for breakfast.

Sadbh’s appetite had returned, obviously now that whatever was blocking her from eating properly over the past couple of days had moved on.

Larissa was able to return to work today and Sadbh was very happy to see her. She was not as happy when mommy got ready to leave and insisted on all three of them going for a spin in the car.

When this request was denied Sadbh tried to convince Larissa that it was ok for both of them to go for a drive. Sadly for Sadbh this was not going to happen.

The nanny that we interviewed last week stopped by to meet Larissa and spend some time getting to know Sadbh a little more. Sadbh was delighted to have two people to play with and she and Mariana really hit it off.

Before bath time Sadbh asked Larissa for a “lizer”. It took a few moments to figure out that she was asking for a Nebulizer. She really wanted to watch Fireman Sam on her iPad.

Bath time and naptime went smoothly and as soon as she woke up she was asking Larissa to go outside

The sun was out so they headed out into the garden to play in the sunshine and to gather some strawberries.

The rest of her evening was spent playing and pulling every single toy out of their boxes. The house was upside down in no time but Sadbh had a great time all the same.

Trach care went well tonight and as soon as we were done it was time for Sadbh to snuggle up with mommy and then off to sleep.

New photos.

Photos from June 25 2011.

Photos from June 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 24th 2013

Sadbh slept great but would not tolerate her trach cap. It seems that she has no desire to wear it during the night anymore.

She woke up just as Helen left at 6 so it was an early start to the day.

Unfortunately, Larissa had to take today off so I stayed home from work to look after Sadbh.

She did not have much of an appetite for breakfast so as soon as she was done snacking we got down to some serious fun. She did not want Katie to leave for work however, after some distraction she did not notice her leave.

The weather was terrible so we were house bound for the day. Sadbh wanted to head down to the basement to play with some of her toys.

Upstairs we built forts out of cushions and blankets and just when Sadbh thought it could not get any better she got to Skype with Nini back in Munich. Sadbh was over the moon, as lately she has been talking non-stop about Nini. They had a great time chatting and when it came time to leave Sadbh was kissing and hugging Nini via the laptop.

It was then time for a bath and afterwards I was sure Sadbh was ready for her nap since her eyes were rolling in the back of her head. I was very wrong and Sadbh had a brilliant time playing like a monkey in her cot.

After an hour I finally gave in. Sadbh was in a funny mood and you could tell that she really needed to sleep. She kept going for another hour and a half and she finally crashed hard.

She hardly moved for an hour and fifteen minutes and woke up very upset soaking in sweat.

Sadbh wanted to snuggle so we cuddled up for an hour and a half while she slept.

Mommy came home just as Sadbh was waking up and she was so happy to see her. She jumped right out of my lap and straight into Katie’s.

We were interviewing another nanny this evening and Sadbh was very quiet. She was happy cuddling into Katie for the duration of the interview and just as we were wrapping up she got very playful. They both hit it off really well and Sadbh proceeded to run laps around the house showing off how fast she is.

The rest of the evening was spent getting ready for dinner and after that it was time for Sadbh’s second bath of the day. Trach care was next and once we were done she was quick to snuggle up with Katie before heading off to sleep.

It was a great day and twice after changing her nappies Sadbh gave me a huge hug and said “daddy, you are the best!”. The first time she sounded very sincere, however the second time she sounded like she was trying to butter me up for something. Either way it was a very pleasant surprise.

New photos.

Photos from June 24 2011.

Photos from June 24 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 23rd 2013

Sadbh had another very good night and woke up asking for Fionn just before 7am.

We had another busy morning planned, as we had to move the boat to a storage yard south of Seattle.

Sadbh got very upset when we pulled away from the yard, as she did not want to leave the boat behind.

When we got home one of Katie’s friends stopped by to hang out and spend time with Sadbh.

Amanda specializes in Reiki, which is a Japanese technique that focuses on “life force energy” and promotes healing.

As Katie and I managed trach care Amanda performed Reiki on Sadbh and as soon as Sadbh was asleep in bed Amanda continued for almost an hour.

She felt some energy around her nose that she identified as a possible blockage and she also could feel where Sadbh fell on her knee yesterday.

Sadbh slept for a while longer and woke up well rested.

The weather wasn’t too bad so we loaded up her stroller and headed off for a walk.

It was nice to be outside and Sadbh was really enjoying her walk.

We ended up at the Seattle U campus which Sadbh keeps calling “Sadbh’s park”.  

There must have been a big graduation celebration as there were a lot of people around. Sadbh had a great time running through the fields and as soon as she spotted the chapel that Nana and Gerdie used to bring her to she insisted on us going in.

She loves it in there and especially loves to hear the echo of her voice. Out of nowhere she started to call out Annabelle’s name and then started to sing the words “Annabelle, I love you, yes I do”.

As we left we lit two candles, one for Annabelle and the other for Fionn.

We popped into Café Presse for dinner on the way home and soon Sadbh was making new friends with everyone around us. She is such a flirt.

Just before bedtime she was very cuddly and wanted to snuggle with me. It was really cute and very comfortable.

New photos.

Photos from June 23 2011.

Photos from June 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 22nd 2013

Sadbh slept great and woke up at 6:45 asking for Nini.

As soon as I had all her equipment unhooked we were off upstairs to wake mommy up.

Sadbh was in a great mood so we got going after a quick snuggle in bed.

It was a busy day so we were all glad for the early start. We headed off to get the boat so we could get it ready to sell and Sadbh could not stop talking about going to see it.

Along the way we chatted with Granddad back in Cork and Sadbh was yapping to him like crazy.

By the time we arrived home Sadbh was exhausted so we gave her a bath and started on trach care. As soon as we were done it was time for Sadbh to go to sleep but she was not having any of it. She was overly tired and for the next hour she bounced around her cot like the Tasmanian devil.

After lunch her friends Clodagh and Cormac stopped by to visit. Sadbh was over the moon and all three kids had a great time playing in the garden.

She was sad to see them go when it came time to leave but soon she was happy playing in the boat.

Before she knew it her neighbor Maya came by to plan and they both ran into our other neighbors garden and started to raid her strawberry bushes.

I’m sure their nappies are going to be very fruity tomorrow after all the berries that they scoffed down.

When it came time for going to bed she was completely wiped out so it took all of five minutes to get her to sleep.

New photos.

Photos from June 22 2011.

Photos from June 22 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 21st 2013

Sadbh woke up around 7 after a very restful night sleep.

She was in a very good mood and delighted to see mommy.
As Sadbh played with her toys in the basement she kept asking for Nana and even tried to get into Nana's bedroom. 

Ali-Baba came by to hang out and play and Sadbh really enjoyed her company.

They were able to get trach care done and afterwards they headed off to University Village to browse the shops.

By the time they were half way there Sadbh fell asleep.

When I arrived home I was greeted by Sadbh shouting, “I love you daddy” from the back door. It was definitely a great homecoming.

The sun finally started to come out so we headed out for pizza for dinner and afterwards a nice walk at Seward Park. Sadbh was fascinated with all the goose poop and did her best to avoid stepping in any of it.

She was well worn out by the time she arrived home so it did not take long before she was fast asleep.

New photos.

Photos from June 21 2011.

Photos from June 21 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 20th 2013

Today was a very difficult day for us as we received some heart breaking news last night.

Picking up on our sorrow Sadbh worked hard all day to raise our spirits.

Sadbh slept really well and woke up in a great mood. Her lungs have been sounding good lately and thankfully Helen does not have to suction too often.

Sadbh had an appointment with her homeopathic doctor, Krista, today and we hope to get a new remedy in the next couple of days.  Krista is a little stumped with Sadbh’s case but she is as determined as ever to provide as much help as possible.

As soon they arrived home it was time for trach care. Ali-Baba was a big help and soon Sadbh was sleeping her little head off.

Later in the evening a couple of neighbors stopped by to play with Sadbh. She was thrilled and even though the two girls were 6 years older than Sadbh, they all had a fantastic time.

Sadbh had no problems going to bed tonight and was soon fast asleep.

New photos.

Photos from June 20 2011.

Photos from June 20 2012.

Rest in peace sweet Annabelle. We love you.

Wayne, Katie and Sadbh

Sadbh’s update – June 19th 2013

Sadbh slept great and woke up in a fantastic mood.            

Su Jin was working today and Sadbh was very happy to see her when she arrived. She was not so keen on Katie leaving for work but her mood soon improved and she had a wonderful day playing and having fun with Su Jin.

The fun continued as soon as I arrived home and Sadbh seemed to have so much energy. She was running and racing and would not let me sit for one second. We had a great evening.

Katie and I managed trach care just before bedtime and as soon as we finished up it was time for Sadbh to give us all a big cuddle before going to sleep.

New photos.

Photos from June 19 2011.

Photos from June 19 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 18th 2013

Sadbh slept much better last night and woke up asking for her cousins Fionn and Annabelle just before 7am.

After breakfast Sadbh and mommy headed off up to Capitol Hill for a walk. Sadbh was happy to ride along in her stroller and she was very excited when they arrived at a bookshop. She got to pick out six great books and afterwards they went for a treat.

It was a beautiful day and by the time Sadbh arrived home she was starting to get tired.

Unfortunately, she had no intention of going to sleep and played in her cot for an hour and a half before eventually falling asleep.

She woke up very groggy an hour and a half later and only wanted to snuggle with mommy.

We were interviewing another nanny when Sadbh woke up so she was extremely shy.

As soon as the nanny left Sadbh came out of her shell and spent the rest of the evening playing and generally being mischievous.

Katie and I managed trach care just before bedtime and thankfully Sadbh was very corporative.   

It took a while to get her to sleep and soon she was sleeping in mommy’s arms.

New photos.

Photos from June 18 2011.

Photos from June 18 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 17th 2013

Sadbh decided to wake up during the night and wanted to play with Helen. It took Helen a short while to convince Sadbh that everyone else was sleeping and soon she was back to sleep herself.

Larissa has the week off so Katie stayed home to look after Sadbh.

Sadbh had a great morning playing with Katie and before she knew what was going on her cousins were knocking at the door.

Today was Ali-Baba’s birthday and she was taking her grandkids to the Space Needle for lunch.

Sadbh could not wait to go and she was very eager to see the Weedle on the Needle from the storybook that she loves so much.

The lift ride up was so fast that Sadbh clung onto mommy really tight. As soon as they arrived at the top she called out for more. I think that we have a little daredevil on our hands as she did the same thing on the way down later on.

Lunch was so much fun and Sadbh joined in on the birthday singing for Ali-Baba.

Katie brought Sadbh out on the observation deck for a look and when they got to the edge Sadbh said “oh no, don’t jump down there”.

With all the yummy food, tasty desserts and all the excitement Sadbh was out like a light on the trip home.

It was such a hectic afternoon that Katie almost forgot that we were meeting with a potential nanny. Thankfully Katie made it home in time and the meeting went well.

As soon as the nanny left we got Sadbh ready for trach care. She was a great sport and allowed us to take care of it despite her neck being very sensitive.

The rest of the evening was spent playing and when it came time for bed she was exhausted tired. It took some convincing to get her into her pajamas but as soon as she was changed she was a lot happier. I offered to put her to bed but she asked me to go write the blog. It was so funny. 
In the end mommy snuggled up with Sadbh and it was not long before she was fast asleep.

New photos.

Photos from June 17 2011.

Photos from June 17 2012.

All the best and Happy Birthday to Ali-Baba,

Wayne, Katie and Sadbh.

Sadbh’s update – June 16th 2013

Sadbh was wide awake at 6 and calling for mommy and daddy. It was another early start and Sadbh was raring to go.

Since it was Father’s Day I got to sleep in for a while and Sadbh and mommy got busy making breakfast. Sadbh was very helpful and was great at tasting the ingredients as they were being prepared.

Soon Sadbh was climbing into bed wishing me a happy Father’s Day. She made the prettiest card and gave me loads of hugs and kisses.

The rest of the morning was spent playing and having fun and when it came time for trach care Sadbh feel asleep half way through.

She was in a deep sleep so we put her in bed where she slept for two hours.

As soon as she was awake we loaded up the car and headed off to meet with Ali-Baba to celebrate her birthday.

Sadbh’s cousins were in town from Portland for the evening and she was over the moon when she met them. Her cousins are so good and they each took turns helping Sadbh color in her drawings.

After dinner we headed off to a bluff over the sound to have some birthday cake. The kids had fun chasing each other around and burning off some energy.

It was soon getting close to Sadbh’s bedtime so we said our good byes and hit the road for home. Sadbh was sad to leave but she will be meeting them all tomorrow so the fun and games will continue.

Sadbh was pooped by the time she arrived home and it did not take long before she was fast asleep in her bed.

It was the perfect ending to a perfect day.

New photos.

Photos from June 16 2011.

Photos from June 16 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 15th 2013

Sadbh woke up at 4:30am and was desperate to be with Katie. She was very upset so Danielle called Katie down. There was no hope in getting her back to sleep so it turned out to be a very early start to the day.

By 6am I was also being dragged out of bed so we all headed downstairs for breakfast.  Sadbh was in a great mood and very eager to get her day started.

We were able to Skype for a brief while with Gerdie back in Cork.  Sadbh asked to see Nana a couple times, but unfortunately, Nana was away so Gerdie took the message. 

We decided to get trach care out of the way as soon as possible so that we could make it to the zoo. Shortly after we were done, we packed up and headed off. 

Sadbh was fast asleep within seconds of leaving the house so we decided to drive around a bit to let her continue sleeping.  We ended up in north Ballard and picked up a couple treats at the bakery that Katie, Sadbh and Ali-Baba went to last weekend. 

Since we were in Ballard, we carried on to Ali-Babas’s to say hello to Katie’s Aunt Kathie and Uncle Bill.  Sadbh woke up just before we arrived and she was delighted to see everyone. 

She also got to goodbye to Phebe, Ali-Baba’s dog, as, sadly, she will going to a new home in the next few weeks.  Sadbh was happy to introduce Regal to Phebe and the two were instant friends.

Soon we were off to the zoo and so was half of Seattle, apparently.  It took us awhile to find parking and Sadbh kept insisting that we were almost there as we drove around and around. We were all delighted when we found a close spot and Sadbh was over the moon to be heading in.

We saw giraffes, birds, elephants, orangutans, penguins, flamingos and many other exotic animals.  Sadbh’s favorite spot in the whole zoo, however, was this one pothole and a spray painted spot.  She quickly became attached to this location (right smack in the middle of all the people coming and going) and we were unable to drag her away for a while.  It was pretty funny.

At one point, an airplane flew overhead.  Sadbh started waving frantically and yelled “Bye Bye Nini”.  She does this every time she sees or hears an airplane. 

She wore her cap for 3 and a half hours in one single go and she did great.  When she got home, she was exhausted and since she hadn’t really properly eaten during the day, Katie made her a nice big meal.  She managed to eat most of it. 

Sadbh was delirious with exhaustion and was running around like a zombie.

Just before bedtime Sadbh had a nice relaxing bath. This did the trick and soon she was snuggling with mommy before falling into a nice deep sleep.

Hopefully she’ll sleep in a little later tomorrow.

New photos.

Photos from June 15 2011.

Photos from June 15 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 14th 2013

Sadbh slept well despite some tossing and turning and managed to tolerate her cap for thirty minutes.

She woke up in a great mood and was happy to see Larissa when she arrived at 8:30.

She had an exceptionally good morning and was not too fussed when mommy left for work. Thirty minutes later she did mention to Larissa that she missed mommy, but other than that she was in a fantastic mood and had a lot of fun playing arts and crafts with Larissa.

All of a sudden Sadbh got a surge of energy and decided it was time to run around the house 15 or 20 laps. She was running so much that her nappy started to slide off.

Amy stopped by to help out with trach care and as soon as they were done Sadbh insisted on Amy rocking her to sleep. She was out within a couple of minutes and she slept great for an hour and a half.

When Sadbh woke up she was shaking and making very strange noises. Larissa ran to see if she was ok only to discover that Sadbh was playing around and laughing to herself.

When she stood up she was pulling at her trach ties and she managed to undo one side. Larissa was quick to react, while remaining calm, and managed to secure Sadbh’s trach tie without making a fuss.

When Larissa’s shift ended her family stopped by to pick her up. She has two adorable kids, the youngest is two days younger than Sadbh. Sadbh and Jameson hit it off straight away, especially after Jameson gave Sadbh a huge hug.

When it came time to leave, Sadbh asked Jameson and Calister to stay and she looked so disappointed after they left.

We need to arrange for some play dates between Sadbh and her new friends.

The rest of the evening was spent playing and having fun. For dinner Sadbh and mommy went out into the garden to pick some lettuce. Our neighbors Pat and Anna were out and Sadbh was excited to see them. She started talking about going to the market and took off walking down the driveway with the basket of lettuce.  Anna showed Sadbh where she is growing strawberries and Sadbh was delighted to pick a few and eat them.

Bedtime was easy as Sadbh was asleep within a few minutes of her head going down.

Earlier this week we lodged an external appeal with the insurance company to overturn the decision to end our homecare nursing coverage.

With the help of our attorney, Dr. Inglis, Dr. Hathaway and Katie’s relentless determination we finally heard back that the denial was overturned. Since we have not yet received a written notification we do not know if the current hours will be affected or not, however we are over the moon that Sadbh will continue to receive the nursing coverage that she needs. Just in the nick of time too as her coverage was due to end on midnight on June 24^th.

New photos.

Photos from June 14 2011.

Photos from June 14 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 13th 2013

Sadbh had a restless start to her night and woke up with a jolt a couple of times. She had no problem going back to sleep and eventually fell into a nice deep sleep for the rest of the night.

She was a little reluctant to say good-bye to mommy this morning. After a few minutes of being upset she finally realized that everything would be ok.

She managed to get a hold of Larissa’s stethoscope and gave her a thorough examination.

Larissa was a great sport and Sadbh had a fanatic morning playing doctor.

Eventually Sadbh moved on to playing with her new toy bus that she got from Nana and Granddad and all of a sudden Sadbh jumped up ran to the front window while shouting “Ali-Baba is here!”.

Low and behold she somehow heard Ali-Baba’s car pull up.

Ali-Baba’s sister Kathie and her husband Bill are visiting from the Bay Area and Sadbh was excited to meet them. She certainly put on the charm and everyone had a fun time.

The excitement of a fun packed morning got to Sadbh so she was a little worked up when it came to nap time.

It took a lot longer for her to fall asleep and when she did she fell into a nice deep sleep.

Sadbh was hungry for lunch when she woke up and had a big feed. She got to wear her trach cap for quite a while and when she was done she raised her chin, asked Larissa to take it off and waited until she did so. Usually she will just pull it off herself so it was great to see that she is finally waiting to let Larissa remove it.

The rest of her evening was fun and she was over the moon when mommy arrived home from work.

Katie and I managed trach care just before putting Sadbh to bed. She was very cooperative and watched Fireman Sam as we took care of business.

I got a chance to snuggle with her for a while before she went to sleep but she finally wanted mommy.

It took a long time for her to go to sleep and she wanted to play with Katie and got very upset when Katie put her in her bed.  After a second snuggle and lots of wiggling and singing of “Wheels on the Bus”, she finally dozed off into a deep sleep.

New photos.

Photos from June 13 2011.

Photos from June 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 12th 2013

Sadbh slept great and Helen gave her a break from wearing the cap to allow her to rest before her surgery.

Larissa took over from Helen at 6 and Sadbh woke up around 7:30 in a great mood. She was not hungry and was eager to get stuck into some serious fun.

She kept telling Larissa that she wanted to go to Hawaii and that she was going to see Dr. Inglis today.

Sadbh’s appointment check in was scheduled for 11:15 and she did really well up until 9:30 or thereabouts.

She soon started to get very sleepy and extremely cranky. We had all done an excellent job distracting her and keeping her mind off of food.

By 10 I started to give her some of the toys that she got from Nana and Granddad and she was so excited when I gave her a stuffed toy of Tiger and Arnold from her favorite cartoon, Kipper.

Soon we had the car loaded up and we were on the road. Sadbh fell asleep very soon afterwards and slept right through check in.

When she woke up she was very happy and was very chatty to everyone around us.

We were so lucky as I’m sure she was starving and she could have been very difficult to handle.

The procedure went very well and after a good thorough look at Sadbh’s vocal cords and airway Dr. Inglis concluded that he could not see any significant improvement. He noticed that she did not have any granuloma build up which is good as it is less likely to be an issue in the future.

Dr. Inglis even changed out Sadbh’s trach and saved us the hassle since it was due to be done this week anyway.

When she arrived back in the post op room she was extremely upset. She wanted desperately to remove the IV in her hand and all the leads that were attached to her chest. I made the mistake of taking a bunny cracker from her and you would have thought the world had ended.  She couldn’t stop crying about it for the longest time.  It took ages to calm Sadbh down and thankfully the nurse helped out by removing everything that annoyed her.

On the way home we stopped off to get Sadbh an ice cream treat. She had not eaten much after surgery but soon devoured her dessert.

Both Katie and I were wiped out after the day’s events so we decided to head off for a walk up to Capitol Hill for dinner. Sadbh was in an excellent mood and wanted to walk most of the way.

When it came time for bed we gave her a nice bath, the second one today, and as soon as she was dry and in her pajamas she was soon fast asleep in mommy’s arms.

New photos.

Photos from June 12 2011.

Photos from June 12 2012.

Thanks for all the well wishes today.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 11th 2013

I was able to Skype with Sadbh just as she was getting ready for bed last night and she was in a very happy mood. She slept great throughout the night and woke up around 6:30.

Sadbh’s nurse supervisor, Caity, stopped by to recertify Sadbh this morning and Sadbh gave her a nice big hug. She asked for her to put down the paper work and to join in on the fun activities.

Later in the morning Amy stopped by to help Sadbh and Larissa with trach care. Both she and Larissa were explaining to Sadbh that I would be home after she wakes up from her nap. She responded with “no trach care, Sadbh go to sleep”. They insisted on giving her a bath and managing trach care and thankfully she gave in.

She slept for an hour and a half and, as she expected, I was there when she woke up. She gave me so many hugs and made me feel so welcome. It was the best homecoming I have ever received.

We had a fun evening hanging out and playing with Sadbh’s new pram. She could not believe her eyes when she saw it and immediately put her baby doll, Fionn, into it.

Sadbh’s surgery is scheduled for tomorrow so she cannot eat when she wakes up in the morning. We kept her up a little later than usual and gave her a nice big dinner.

Thankfully she had a nice big appetite so I’m sure her belly is nice and full and it will tie her over until her appointment.

New photos.

Photos from June 11 2011.

Photos from June 11 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 10th 2013

Sadbh had a good night sleep and she let Helen cap her for nearly 30 minutes total.  She woke up shortly after 6am and immediately asked where is Michelle.  When she heard that Michelle had gone home, Sadbh said “I’m sad”, but she then promptly wanted to get up and get going. 

She had a treat of yummy Irish soda bread and Katie and Sadbh went upstairs to get ready for the day.  Sadbh was happy to see Larissa when she arrived, but she wasn’t so happy when Katie put on her coat and grabbed her bag.  It was an emotional start to the day.

Sadbh decided that she wanted to have a pajama day, so she ended up wearing her kitty PJs for the morning and then switched in to her Santa PJ bottoms for the rest of the afternoon (with a dress, of course).

She didn’t want to eat too much during the day, but she made up for it in the evening.  When it was time for bed, Sadbh got to quickly Skype with Wayne, Gerdie and Nana.  It was 4am in Cork and time to get Wayne to the airport for his return trip.

Sadbh (and Katie) can’t wait for Wayne to get home tomorrow.  We’ll be watching the airplanes all day long and waiting for his one to arrive. J

New photos.

Photos from June 10 2011.

Photos from June 10 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 9th 2013

Sadbh slept great and managed to wear her cap for a total of 41 minutes (over two sessions – 33 min and 8 min).  Danielle offered to stay a little later so that Katie could sleep in a bit and Sadbh slept in a little too.  She woke up at 6:40 and wanted Mommy right away.

There was an exciting day planned and the fun got going when Clodagh and Suzie came by later in the morning.  Sadbh and Clodagh played around the house for a while and Sadbh was working on learning how to share her toys.

Ali-Baba arrived soon after and before too long, we decided to do trach care. It took Sadbh a little while to settle down, but Ali-Baba held the phone (to calm and distract her) while Suzie held the trach and Katie cleaned.  Suzie did fantastically (it was her second time and her first time doing it while Sadbh was awake!). 

Sadbh’s neck is very raw and sore and she has one of the biggest breakdowns she has ever had. Katie paid extra attention to it and put two bandages on it to hopefully heal the wounds quickly.  Sadbh was a trooper and although she was a fairly active, trach care went smoothly.

After trach care, Clodagh offered to have Sadbh snuggle up and the two girls watched a little bit of a show together.  A little while later, Sadbh, Clodagh, Suzie and Katie packed up and loaded into Suzie’s car while  Ali-Baba headed home.

As soon as the car got going, both girls promptly fell asleep.  This foiled the plans a bit since we wanted them to have a little rest.  We had been planning to go downtown and walk along the waterfront and visit the sculpture park.  Instead, we headed east and over to Woodenville where, after the girls had a good hour nap in the car, we enjoyed a pizza sitting outside by a water fountain.  Sadbh was over the moon to play with Clodagh and every little thing delighted her. 

After lunch, we went to visit a small farm and Sadbh was able to see her first live horse. Not only was she able to see the horse, she was also able to give him some hay and pet his nose!  It was very exciting and when the horse had a sneeze, both Sadbh and Clodagh jumped out of their skin.  Sadbh scrambled to get away as quickly as she could, running first to Katie and then further away to Suzie.  It was quite the sight.

Shortly after we got home, we had another visit from a very special friend, Michelle.  Sadbh was exhausted, but she managed still to spend a little time with Michelle while she ate some dinner.  After a bath and a quick snuggle with Katie, Sadbh was out in no time.

It was a very special day filled with laughter and fun.  Thanks to Suzie and Clodagh for spending the day with us!

Despite all the fun, after we got home, Sadbh still mentioned that she missed Dada and was very sad.   We still can’t wait for him to come home on Tuesday!

New photos.

Photos from June 9 2011.

Photos from June 9 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 8th 2013

Sadbh slept very well, although she is still not tolerating the cap at night.  In fact, she has gotten so sure that she doesn’t want to wear it, she doesn’t even have to wake up to take it off and hand it to the night nurse.

She woke up around 6:30 and was in a great mood and ready to start the day.  She wanted to play on the deck and sit at her table, then she had a great time trying on her undies (over her pants) and dance around.

Sadbh was able to Skype for a few minutes with Daddy and Uncle Ger as they were driving around Dublin looking for a parking spot.  We miss Daddy so much, but we are happy that he is able to be with his brother and his family right now.

Sadbh discovered how much fun she could have hiding in the curtains and looking out the window at our neighbors working in their yard.  After a morning of running around the house, Ali-Baba came by to help with trach care.  Sadbh was an angel and let Katie and Ali-Baba manage just fine.

Afterwards, the ladies packed up all her gear and set out for the afternoon.  Sadbh was quickly asleep in the car and Katie managed to get a few errands done. 

After an hour or so, Sadbh woke up and promptly reminded Ali-Baba that she wanted to go to Greenlake (apparently Ali-Baba had mentioned this to Sadbh earlier in the week, and Sadbh was not about to forget it!).

First stop, though, was a lovely bakery in Greenwood.  Sadbh thought everything looked “beautiful” and she even managed to make a new friend in the bakery. 

From there, the ladies headed over to Roosevelt to get some healthy take out food and then down to Greenlake for a picnic and some running around.  Sadbh loved it when Ali-Baba chased her, but she was so fast, it was hard for Ali-Baba to keep up.

When we got home, we were all exhausted and it was time for a quick dinner and then off to sleep.

It was a lovely fun day of Grandmother, Mother and Daughter.  We are so lucky to have Ali-Baba living close to us and to able to spend some good time with her!

New photos.

Photos from June 8 2011.

Photos from June 8 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 7th 2013

Sadbh had a good night, but woke up around 6:15 and was very sad and emotional.  She ate two pieces of French toast for breakfast and was very upset when Katie started to make signs to go to work. 

Her neck was red and sore so Katie and Larissa put a piece of medical tape on it.  Sadbh was still very fussy and clingy and she really did not want Katie to leave for work. 

They packed up for a walk and all headed out.  Sadbh cried when Katie didn’t continue on down the block, but as soon as they got to the chickens, she was happy again. 

Larissa, Amy and Sadbh carried on to the Fire Station.  Sadbh was very scared at first, but she got to look at one of the engines and speak to a few Firemen.  She was shy, but interested.  She got a cute sticker and the gang returned home.

After a snack, it was time for trach care, which was a little rough since her neck was so sore and red.  She said "owie" to every spot Larissa touched as she cleaned.  Afterwards, she slept for a few hours and woke up to a nice dinner of fried rice, tofu, avocado and lots of frozen peas (she insisted on the frozen ones, maybe she’s getting more teeth?).

She continued to be very emotional and, at one point, she hung her head low and said “I’m sad.  I miss Daddy.”  Throughout the day, Sadbh insisted on looking at pictures of Daddy on the iPad. 

When Katie got home from work, Sadbh seemed to be in slightly better form.  They were able to get Daddy, Nana and Grandad on Skype and Sadbh was delighted to play a bit with them.

The rest of the evening was spent drawing, playing and eating.  Sadbh had a hard time going to sleep, even though she was completely wrecked.  She finally dozed off around 9:30, just in time for Danielle to arrive.

There is no doubt she feels the stress of the house currently.  She is very sad her Daddy is away and she can’t wait for him to return next Tuesday. 

We are also working very hard to sort out insurance issues and the clock is ticking towards June 24^th, when UnitedHealthcare is planning to terminate our nursing coverage.  Katie is working with an attorney on a 3^rd and final review and we will continue to fight for what is right from there. Sadbh requires licensed and skilled care around the clock to ensure her airway is open and we will fight for this.

New photos.

Photos from June 7 2011.

Photos from June 7 2012.

All the best,

Wayne, Katie and Sadbh.