Sadbh’s update – September 30th 2014

Sadbh woke up shortly after seven and straight away she started chatting with Kim. She was talking about what she is going to dress up as for Halloween and all about baby Taco.

She was very cranky throughout the day and I think it was because she had a fairly restless night.

We had a busy morning as we had our post-op visit with Dr. Inglis. Sadbh was in a great mood but was nervous that Dr. Inglis might want to stick a camera up her nose.

Dr. Inglis, Pam and the rest of the team were disappointed with the lack of success with Sadbh’s surgery and agreed that she had made a step backwards rather than forwards.

Sadbh realized fairly quickly that her worst fear was about to come true and it took all my strength to hold her still while Dr. Inglis ventured through her nasal channel and down to her vocal cords. Unfortunately we could not get a clear view of her vocal cords however Dr. Inglis believes that there might be a slight build up of granuloma on the vocal cord that was opened and that this is possibly the cause of the additional blockage.

Once the camera was removed Pam was quick to get Sadbh a box of toys to choose from. It took a while for Katie and me to comfort Sadbh but eventually she was happy and in the box looking for a toy.

On the way out of the clinic we bumped into Jackie who trained us on respiratory care, trach care, trach changes and everything to do with Sadbh’s trach. She was so surprised to see us and could not believe how big Sadbh had gotten.

We also ran into Robin who was our occupational therapist. As with Jackie, Robin was so happy to see Sadbh’s progress and how well she was developing, especially with her speech.

We were all drained by the time we got home and Sadbh even nodded off to sleep.

Before we could do anything we had to give Sadbh a bath and manage trach care. She was delighted to soak in the tub and play with her bath toys. At one point she nearly slipped under the water but I was able to catch her just in time. This probably took another ten years off my life.

Later in the evening we headed up to Capitol Hill for a walk.

It was great to get out of the house and into the evening sunshine.

By dinnertime Sadbh was out of her mind delirious and we did not help much by giving her a cup cake for being so brave during her doctors visit. Soon she was covered head to toe in cup cake crumbs and as happy as a clam.

Every time I visit Children’s Hospital I always realize how good we have it despite Sadbh having a trach. On the way to the car park we have to pass a parking area for RV’s and trailers belonging to parents that have to relocate from Alaska, Montana and other places that are not so close to Seattle. Some of these mobile homes are parked for months if not years.

New photos.

Photos from September 30 2011.

Photos from September 30 2012.

Photos from September 30 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 29th 2014

Sadbh slept well and was in a deep sleep when I took over from Danielle at six. She slept on for another hour and forty-five minutes but when she woke up she wanted her Mommy.

Sadbh could not wait to set the table for breakfast. She pulled out all her plastic glasses and utensils and set us all up with water and orange juice. It was funny to watch her buzzing around the kitchen and dining room.

As soon as Katie left for work Sadbh got dressed and we got stuck into some serious reading. She kept trying to convince me to pull out her toys so she could play but she was in a great mood and was happy have countless books read to her.

Ali-Baba came by for a while so we were able to get trach care out of the way. Sadbh resisted at first but soon gave in making life easy for everyone.

The rest of the day was spent reading and solving puzzles.

Sadbh got to break out her toys as I was making dinner and she had a fantastic time making a huge mess around the house.

By bedtime she was very tired but she wanted to bring one of her dolls to bed with her. She kept grabbing the dolls hand to make sure that she was ok even while falling asleep.

Not long after Kim started her shift we heard some loud banging coming from Sadbh’s room. I quickly turned on the monitor and could see her banging a book on the wall. Turns out that a spider was climbing the wall next to her so she used a book to kill it. I’m very glad that Sadbh did not wake up.

New photos.

Photos from September 29 2011.

Photos from September 29 2012.

Photos from September 29 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 28th 2014

Sadbh managed to sleep through to 6:30am and then she woke up and started chatting away to Danielle.  At first she had a little fake cry (she told Katie later that it was fake).  Then she told Danielle about Daddy going hiking with his really big backpack, then about baby Taco coming at Christmas time, then about the movie The Little Mermaid, and so on and so on.  It was quite cute to watch through the monitor.

After Danielle left, we had and early breakfast and got straight into playtime.  A little later we decided to head back to bed and watch some cartoons for a while.  It was a lovely, lazy morning. 

We got to Skype with Nana and Grandad, but unfortunately Sadbh was already showing signs of being tired and she didn’t want to talk much.  Ali-baba stopped by a bit later to play and help with trach care.  Sadbh was very tired by this time, but she did not want to nap. 

Later In the afternoon, our friend Catherine stopped by for a visit and we headed off for a walk in the beautiful afternoon sunshine.  Before bed, Sadbh put on a real show for all of us and she was singing and dancing and performing like crazy.  It was very cute and funny.

She was exhausted as bedtime approached and she was fast asleep moments after her head hit the pillow.

New photos.

Photos from September 28 2011.

Photos from September 28 2012.

Photos from September 28 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 27th 2014

Sadbh had a good night and when she woke up the first thing she asked for was Mommy to come in with her braid and her glasses and make pancakes.  And so the day was started. 

Wayne left early in the morning to go backpacking and overnight camping.  Sadbh was sad to see him go, but was very intrigued by the fact that he would be going into the mountains and sleeping outside.  She can’t wait for him to come home tomorrow.

After pancake breakfast and some playtime, Ali-baba came by for a visit.  We got trach care out of the way and soon headed up to Alib-baba’s place for an afternoon play session.  Sadbh was wearing quite the getup today and she loved trying out her scooter at Ali-baba’s condo.

The afternoon was spent playing with fun toys at Ali-baba’s place and eating ice cream and chips.  After dinner, Sadbh passed out in the car on the way home (around 6:30pm) and she wanted to get straight in bed when we got home.

She had a very full and fun day, so hopefully she’ll stay asleep through the night and won’t wake up too early in the morning.

New photos.

Photos from September 27 2011.

Photos from September 27 2012.

Photos from September 27 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 26th 2014

Sadbh spent the night talking in her sleep but despite this she had a very good night.

She had an early appointment to get a flu shot at her doctors office so I had to wake her up to get her going. She was groggy at first but I soon had her up and getting ready.

As soon as we arrived at her doctor’s office she remembered receiving a gift during her last visit and immediately got excited thinking about what she would get this time. Unfortunately, she got very nervous when it came time for the nasal flu mist and held onto her nose for dear life. She would not let go. It was quite traumatic for Sadbh but we eventually succeeded in giving her the flu shot and thankfully this will spare her getting an injection.

Dr. Hathaway even popped her head in to say hi to Sadbh and she could not believe how tall she has gotten.

As promised, we stopped off to get a cup cake on the way home and Sadbh was delighted.

The rest of the day was spent playing and having fun. When the sun came out we headed into the garden and the fun continued out there.

Another reward for Sadbh was a movie and ice cream after dinner. Of course she picked Frozen and by the time the movie ended she was very ready for bed.

It was a very busy and long day but Sadbh did great considering the drama first thing in the morning.  She is such a brave girl.

New photos.

Photos from September 26 2011.

Photos from September 26 2012.

Photos from September 26 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 25th 2014

Sadbh slept well and woke up shortly after seven. She asked Kim to play the Chicken Song on her phone for her and they both had a fun sing-along first thing in the morning.

After breakfast I had to head down to REI to get some hiking gear for a trip this weekend. Sadbh was in her element with all the tents and she had to test as many of them out as she could.

Later we headed over to the bike section and Sadbh really wanted me to buy a bike trailer for her and baby Taco. When I told her that we would have to discuss this with Mommy she got extremely upset. I managed to calm her down for enough time to look at the trailers again and when it came time to leave she got even more upset that we were not bringing one of them home with us.

The rest of the morning was spent reading, doing arts and crafts and hanging out. When the weather cleared we headed out for a walk to Nora’s Woods. She really enjoyed getting out for a stroll but when we got to the woods she was freaked out by the number of spiders that we found. I was fairly freaked out too so it was an easy decision to turn around and head home.

The next few hours were spent playing with Sadbh’s toys and after dinner she got to Skype with Nini in NYC. By now she was overly tired and was bouncing all over the house. We missed her bedtime by about forty minutes however she fell asleep as soon as her head hit the pillow.

New photos.

Photos from September 25 2011.

Photos from September 25 2012.

Photos from September 25 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 24th 2014

Sadbh had a very good night and woke up shortly after seven. She popped her head out to say hi. She was delighted to see Kim and asked if she could get some Anna socks from the movie Frozen, cheeky pup.

As soon as I took over Sadbh wanted to get upstairs to see Mommy.

We got back into our usual routine easily enough today and we both had a wonderful day. At one point while I was reading to Sadbh she thought it would be funny to start licking my head. I couldn’t get her to stop and had to admit that it was quite hilarious.

By the time Katie arrived home from work Sadbh was getting very tired. We quickly got trach care out of the way and then it was time for dinner.

Soon Sadbh was bouncing off the walls and getting very upset. She was definitely very tired and thankfully it did not take long before she was fast asleep.

Our new nurse is working out well so far but I have noticed that Sadbh’s room has a strong odor of cat. It stank all day even after I sprayed air freshener around. I’m not a fan of cats whatsoever and this smell drove me crazy all day long. I’m going to give it a few more days to see if it was a once off and if not I’m going to have to figure out a polite way to try and resolve the issue if it can be resolved at all.

New photos.

Photos from September 24 2011.

Photos from September 24 2012.

Photos from September 24 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 23rd 2014

Sadbh slept great and woke up a little after seven. Apparently both Sadbh and I had been talking in our sleep during the night, quite possibly to each other.

We had to pack up to leave this morning and Sadbh entertained herself while we got under way. It’s always easier to pack up for the trip home than it is to pack for a trip, however it still took a couple of hours to get all her equipment packed and loaded into the car.

Sadbh had so much fun regardless and both Katie and I took turns in joining in.

The journey home was easy and Sadbh slept for the first hour or so. Once awake she was hungry but kept herself from being bored by watching Frozen.

We dropped Poppy off at the airport on the way and Sadbh was sad to say good-bye. She really bonded with him during this trip.

Once home Sadbh was elated to see all her toys. She could not wait to get down into the toy room in the basement and pull out as many toys as possible.

It took an hour and a half to off load and set up all of Sadbh’s equipment and by the time we were done we were all tired.

Since it was a wet evening we decided to batten down the hatches and have a relaxing evening.

Just before going to bed Sadbh opened her toy drawer and pulled out her doll that was wearing her “Frozen” socks that have a picture of Elsa on them. Her nurse Kim gave these to her last week.

Sadbh then asked which nurse was working tonight and when Katie told her that Kim was Sadbh said “she’s going to wake me up”. Katie assured her that she wouldn’t but Sadbh insisted “no, I want her to wake me up. I want to ask her to bring me Frozen Anna socks”.

New photos.

Photos from September 23 2011.

Photos from September 23 2012.

Photos from September 23 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 22nd 2014

Around three in the morning Sadbh had a tough time breathing so we had to suction her trach to clear her airway. She was a little upset but soon fell back into a deep sleep.

She woke up shortly after seven and wanted to go out to the living room and play. Since it was Katie’s birthday I asked if she would allow Mommy to sleep in for a while. She wasn’t too keen but we did manage to get an hour or so out of her before finally having to get up.

We had a very lazy day hanging out in the house and swimming in the pool. Sadbh kept herself entertained for the most part and she had a lot of fun.

Later in the evening we headed out for dinner. It was a lovely restaurant up on the hill overlooking the lake. There was a nice lawn next to our table and Sadbh had so much fun running, dancing and singing for us. By the time we got her back into the car she was completely exhausted and was out cold within a few minutes.

New photos.

Photos from September 22 2011.

Photos from September 22 2012.

Photos from September 22 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 21st 2014

Sadbh slept great and woke up at seven. Katie asked her if she would go back to sleep for a while and she did until eight.

She had a fun day in the pool and she really enjoyed herself.

We managed trach care later in the evening since she did not want to leave the pool.

Bedtime was very easy as she was starting to fall asleep shortly after dinner.

New photos.

Photos from September 21 2011.

Photos from September 21 2012.

Photos from September 21 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 20th 2014

Despite going to bed later than usual Sadbh was wide awake and ready for action earlier than usual. Fortunately for me she prefers having Mommy with her so I got to sleep in for a bit longer.

The weather was fantastic so we decided to rent a boat and head out on the lake. Before we could do that we had to get trach care out of the way.

Sadbh fell asleep on the way to the lake and was a little grumpy when we woke her up to get on the boat.

As soon as she realized where she was she quickly cheered up and then enjoyed her time out on Lake Chelan.

By the time we got off the lake she was starting to get delirious so the rest of the evening was a bit of a challenge.

Despite not having her friends around Sadbh had a fun day. She’s so used to being around adults that she is very independent.  

New photos.

Photos from September 20 2011.

Photosfrom September 20 2012.

Photos from September20 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 19th 2014

Sadbh slept great last night and woke up shortly after seven. I checked on her throughout the night and she hardly moved all night.

She was very sad to learn that her friends, Clodagh, Cormac and Dylan would not be able to come for the weekend, as they were sick. To make it up we brought her to a toyshop to get her a treat.

She found a toy horse that she instantly took a shine to and insisted that we buy it for her.

The cost of the horse was much higher than our budget but she negotiated so well with us that we had no choice.

Shortly after arriving back at the house we got stuck into trach care. Sadbh was great and allowed us to get it done easily so she could get back to playing with her new horse.

After that she got to go for a dip in the pool. She had so much fun and got to float around in a big inflatable tube with me.

Bedtime was so easy tonight as Sadbh was completely exhausted. 

New photos.

Photos from September 19 2011.

Photos from September 19 2012.

Photos from September 19 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 18th 2014

Sadbh slept great despite the strong smell of popcorn in her room from her night nurse. This has been the case all week since the new nurse started and on Wednesday afternoon Sadbh actually had strong cravings for popcorn.

Katie and I were up very early this morning, as we had to pack for a quick trip to Lake Chelan with our friends Jules and Art from Kansas. Sadbh woke up in a great mood and kept herself entertained as we got everything packed and loaded into the car.

We managed to get trach care done just before setting off and shortly after leaving Sadbh fell asleep. She slept for an hour or so and was in a fantastic mood for the rest of the journey.

With everyone’s help we had the car unloaded in no time at all and it took just over an hour to get Sadbh’s equipment set up in our bedroom. She kept herself busy with all the toys that she found in the house and she seemed to gain more energy as the evening went on.

Just after nightfall Sadbh wanted her torch so we could go hunting for crickets. We had a lot of fun outside but despite hearing them we could not find any close enough to see.

Bedtime took forever and Sadbh was a little frightened by the shadows on the wall. She asked me if I would stay to protect her and as soon as I placed my hand on her back she quickly fell asleep.

New photos.

Photos from September 18 2011.

Photos from September 18 2012.

Photos from September 18 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 17th 2014

Sadbh had a much better night and woke up close to eight. Unfortunately, she was in a grumpy mood and she wanted Mommy.

I had an appointment early in the day so I packed Sadbh’s breakfast up and we headed off. Ali-Baba met up with us and she and Sadbh had a picnic while they waited for me.

Sadbh had a great time with Ali-Baba and as soon as I finished up we all headed home to get trach care out of the way.

The rest of the day was spent playing and having fun around the house.

           

Katie’s father flew in this evening for a few days and Sadbh could not wait. She was very excited all afternoon and before we headed to the airport she got busy making a thank you card for him.

As soon as we got home she gave him the card and read it out to him. It was very cute.

She was still awake when Kim arrived so Kim had to wait half an hour or so before going into Sadbh’s room. Katie worked her magic and soon Sadbh was sound asleep.

New photos.

Photos from September 17 2011.

Photos from September 17 2012.

Photos from September 17 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 16th 2014

Sadbh had a very good night but woke up at half past six, way too early. As soon as Kim saw that she was awake she engaged Sadbh in conversation and as a result there was no way Sadbh was going back to sleep. I was in the kitchen working on bills and the likes and had hoped to have the morning to get things done before Sadbh woke up.

Sadbh had a fun time with Kim and I was pleased to see that Sadbh was not freaked out waking up with an unfamiliar face in her room.

Kim got to know Sadbh pretty well and Sadbh even corrected her on the correct pronunciation on a couple of words, it was very entertaining.

Sadbh was full of beans for the rest of the day and she did not slow down once. Her imagination ran wild and at one point she was using books as skates to get around the house.

By evening it was extremely hard to keep up with her and despite me being so tired she seemed to get more energy.

Eventually I had to plug her in so I could get started on dinner and this did the trick. I don’t like plugging her in and to be fair Sadbh watches very little TV.

Trach care went well and as soon as we finished up it was time to call Sadbh’s cousin, Hayato, in Portland to wish him a happy birthday. She even got to Skype with Kaito and LuLu and by the time she was done she was ready for bed.

New photos.

Photos from September 16 2011.

Photos from September 16 2012.

Photos from September 16 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 15th 2014

Sadbh slept great and woke up close to eight feeling well rested. She was in a wonderful mood and was ready to start the day.

Somehow Sadbh found a birthday card that she received from her cousins in New Zealand. During breakfast she pretended to read a story from the card. It was a fascinating story about a beautiful woman with curly hair named Sadbh that found a footprint on her back. As she searched for the source of the footprint she found more, some were good and some were not so good. It was a fascinating story and thankfully I was able to capture most of it on video.

Sadbh received a bunch of new books over the weekend from her cousins in Portland and after breakfast we got stuck into about ten of them. She was delighted with herself and kept asking for more.

I wanted Sadbh to have a fun day to make up for her being in such a bad mood yesterday so we headed off to the park in Madrona for a couple of hours. She was thrilled and thankfully there were only a few kids there when we arrived.

She got to play on everything and it was hard to leave when the time was up. Two hours was plenty of time and I could not believe how much energy she still had left over.

Once home it was time for a bath and then some lunch. Despite a few snacks along the way Sadbh had a huge appetite and devoured all her food. She was still in the mood for stories so I got to enjoy another round.

After lunch we headed out into the garden to play and do some yard work. Sadbh found all her toys from Saturday and got stuck into some serious playtime.

By now I figured that she would be ready for a nap but she kept on going. We read a bunch more books and then went inside and role played before playing hide and seek.

Mommy soon arrived home and saved me from sheer exhaustion. I was finding it hard to keep up.

By bedtime she was still going strong but as soon as she was tucked into bed she was out in no time.

Sadbh’s new nurse, Kim, started tonight however we forgot to tell Sadbh before she went to bed. I hope she does not wake up during the night and freak out.

It’s always strange having a new person in our home and tonight things were made a little more awkward as she kept Sadbh’s bedroom door open so Katie and I did not have any privacy as we hung out.

New photos.

Photos from September 15 2011.

Photos from September 15 2012.

Photos from September 15 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 14th 2014

We decided to give Sadbh a break from capping or putting the PMV on her trach and as a result she slept like a log.

She woke up shortly after seven and was over the moon to see Mommy sitting there next to her.

She had a wonderful morning and we even put up her wigwam in the living room. Recently she has started to climb up on the wigwam and today she discovered that the window of the tent provides a very handy step. I know it’s only a matter of time before she manages to get to the top of it and will certainly find herself getting stuck up there. Just as well we are always close by.

After trach care and lunch we headed over to Green Lake for a walk. We stopped off for a quick visit with Derek and Suzie and Sadbh got to spend a while playing with Clodagh and Cormac. She really did not want to leave but she was looking tired and we hoped that she might fall asleep while we walked.

This, unfortunately, did not happen and instead we got to witness, first hand, Sadbh having an all out temper tantrum that lasted over half an hour. We have been so lucky that Sadbh does not have tantrums, and anything that comes close to a tantrum is over within a few quick minutes. Today was something else and it took a lot of patience before we were able to calm her down. By the time she was calm again she was completely wiped out and fell asleep in the stroller.

We were all exhausted for the rest of the evening and when it came time for bed it took ages to get Sadbh off to sleep.

New photos.

Photos from September 14 2011.

Photos from September 14 2012.

Photos from September 14 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 13th 2014

Sadbh had another tough night wearing her PMV on and off and you could tell when she woke up that she had gotten up the wrong side of the bed.

She was out of sorts all day long.

We had a very busy day working in the garden and Sadbh was delighted to have Ali-Baba to play with. It really helped since Katie and I had so much work to do.

The two ladies had a tea party in the lower garden and they really enjoyed themselves.

Ali-Baba helped out with trach care and afterwards it was time to head home. Sadbh was sad to see Ali-Baba and Kirk leave but she soon had dinner and was happy with that.

Bedtime was very easy tonight and Sadbh was out like a light just after I read her a bedtime story.

New photos.

Photos from September 13 2011.

Photos from September 13 2012.

Photos from September 13 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – September 12th 2014

Sadbh wore her PMV on and off throughout the night and was in a deep sleep when I took over from Danielle at six. She slept on for another hour and fifteen minutes and woke up upset and wanting the PMV off immediately. Once I removed the PMV she calmed down and was in a much better mood.

We had a fun day playing around the house today and despite the good weather neither one of us were up to heading out. We simply spent the day building paper boats, painting and playing games. Sadbh and I had a lot of fun and when mommy came home we got trach care out of the way.

With trach care completed for the evening we headed over to Alki Beach to watch the sun set. It was a beautiful evening and Sadbh really enjoyed walking along the waters edge dodging the waves as they splashed up on the path.

Sadbh was wrecked tired from her fun day and passed out in the car on the trip home.

New photos.

Photos from September 12 2011.

Photos from September 12 2012.

Photos from September 12 2013.

All the best,

Wayne, Katie and Sadbh