Friday, October 31, 2014

Sadbh’s update – October 31th 2014



Sadbh had a good night and she slept in until nearly 8am.  She woke up just in time to say a quick goodbye to Daddy, who will be away for a long weekend.  She was very sad to see him go and she told him many times how much she will miss him.

She went outside shortly after he left to look for his airplane and wave goodbye.  In the afternoon, Hayato and Alibaba came by to play and carve pumpkins.  Later Hayato and Sadbh put on their costumes and the crew headed out with the neighbors to go trick-or-treating.  Sadbh was a very spooky, but very cute ghost in a great costume that Wayne had made for her.

We ended the day by watching a movie and having some Halloween candy.  It was a great Halloween. 





All the best,

Wayne, Katie and Sadbh

Thursday, October 30, 2014

Sadbh’s update – October 30th 2014


Sadbh’s new nurse, Jessica, started last night and Katie and I spent the first hour or so showing her Sadbh’s medical equipment and supplies. Sadbh was in a deep sleep and did not wake up once the entire time.
Just as we were finishing up Jessica got very wobbly and started to faint. I was quick to grab her to prevent her from falling and was grateful that she came to a few moments later. Jessica is six months pregnant and she mentioned that she had one similar episode in her first trimester.
Both Katie and I were nervous in case she would faint again but she seemed to be fine so we checked in on her over the monitor from time to time.

Sadbh woke up happy to see Jessica and immediately started to chat up a storm.

After Jessica’s shift ended it was time to get Sadbh ready for breakfast. She was in the mood for pancakes and she helped out beating the eggs and mixing in the rest of the ingredients.
She even asked for some blueberries from the freezer to add to the mix and it was a great call as the pancakes turned out wonderfully.

Sadbh is so excited to be a big sister.  While having breakfast, Sadbh told Katie how everything was going to play out.  She said, “I know, after Halloween and after Thanksgiving it will be Christmas.  Then you are going to go to Taco’s doctor and you will push and Taco will come out.  Then I will hold Taco very gently and give Taco lots of hugs.”  Katie told her she was going to be the best big sister and Sadbh said “Yes! The best big sister EVER!”  We have no doubt she is right.

Just before noon we had an appointment with Dr. Cavanaugh. Sadbh was fantastic and allowed Dr. Cavanaugh to work his magic over her. She did not budge once and responded to all his questions. It was very impressive how mature she can be when necessary.

Sadbh and I had a fun afternoon and got to read a bunch of her books. She is fascinated with all the new stories and asks so many questions on each of the characters.

She even got to Skype with Nana and Granddad just as they were getting ready to go to bed.

By the time Mommy arrived home Sadbh was starting to get tired.
Once she had dinner we got trach care out of the way and Sadbh watched some of her favorite cartoons until bedtime.

Bedtime was easy and after a bunch of hugs, kisses and smiles Sadbh was off to sleep.





All the best,

Wayne, Katie and Sadbh

Wednesday, October 29, 2014

Sadbh’s update – October 29th 2014


Sadbh slept great and we checked on her a number of times to untangle and clear her humidifier hose of condensed water.
She woke up shortly after seven and was thrilled to get to spend a few minutes with Mommy.

Sadbh received a visit from her nurse supervisor to recertify her. Caity who has been with Sadbh for the last two and a half years moved to another company so Sadbh go to meet her new supervisor, Jessica. Everything went really well and Sadbh was like a little chatterbox. She would not stop talking and gave Jessica the full download on who everyone was, from Taco to Granddad and everyone else in between.

We had a fun morning and as a treat I brought her to her favorite bookstore. She really wanted some toys but after going over the reason why we were in a bookstore she opted for a few new books instead.

She could not wait to get home to read them all and when we did she really enjoyed them.

Ali-Baba, Kirk and Hayato came over for dinner and Sadbh was over the moon. She was starting to get a little tired before they arrived but soon her energy level was dialed up and she was running around the place laughing her head off with her cousin.
Hayato did a great job of keeping her going and by the time they all left she was completely exhausted.
After a bedtime story from Mommy Sadbh soon fell fast asleep.





All the best,

Wayne, Katie and Sadbh

Tuesday, October 28, 2014

Sadbh’s update – October 28th 2014


Sadbh slept well for the most part but ended up having a coughing fit sometime around two. Katie was quick to respond and Sadbh was back in a comfortable sleep shortly afterwards.

Katie was getting ready for work when Sadbh finally woke up. Sadbh was not happy to see Mommy missing from her room and it took me a while to get her calmed down.
I was able to talk her into getting dressed and helping me to make breakfast for Mommy.

Sadbh and I had a very tough day. She fought me on everything and by the time Katie arrived home I was completely and utterly fried. Meanwhile, Sadbh was in a great mood eating her dinner surrounded by her toys.

After dinner we managed trach care and then Sadbh was off to bed.

We had been told yesterday that Sadbh’s new nurse was scheduled to start tonight. As soon as I had moved the mattress back up stairs and reorganized Sadbh’s room we received word that the agency omitted something with the new nurse so she will not be starting until tomorrow night.
Despite having to set everything up again, Katie and I are looking forward to sleeping downstairs with Sadbh again.





All the best,

Wayne, Katie and Sadbh

Monday, October 27, 2014

Sadbh’s update – October 27th 2014


Sadbh woke up bright an early and Harjinder did a great job of keeping her entertained for half an hour or so. Sadbh was desperate and was soon climbing the stairs as fast as she could. She was delighted to see Mommy and refused to go back downstairs.

Sadbh and I had a great morning and after breakfast we headed out to run a few errands. I made sure that she used the potty before leaving the house but an hour into our trip she had a strong urge to go again. Since I was nowhere near a bathroom I had to get to our next destination as quickly as possible. Traffic was a nightmare and fearing that she was going to have an accident in the car I pulled up as close as I could to the church on the Seattle University campus and with Sadbh and her equipment in my arms I ran as fast as I could the couple of blocks through the campus to the church.
The toilet in the church was locked so I had to run back to the car and speed off to our next destination. There the toilets were occupied all the while poor Sadbh was holding onto dear life.
At last one of the doors opened and soon Sadbh was very happy. I was very impressed that she held on as long as she had.

Ali-Baba and Sadbh’s cousin, Hayato, came by to visit and Sadbh was over the moon. We got trach care out of the way, with assistance from Hayato and afterwards Sadbh and her big cousin had a brilliant time playing with each other. The next couple of hours were so much fun and when it came time to leave Sadbh was not too pleased.
Since she still had so much energy, I had the responsibility of taking over from Hayato and spent the next few hours playing with Sadbh and her toys. As much fun as that sounds it’s actually extremely exhausting. 

Bedtime was a breeze tonight and since we are without a nurse Sadbh wanted to sleep in our bed that we set up in her room. It did not last long and soon she was snuggled up in her bed and off to sleep.





All the best,

Wayne, Katie and Sadbh

Sunday, October 26, 2014

Sadbh’s update – October 26th 2014


The power came back on shortly after the nurse arrived and we were able to go over the emergency procedures with her incase it went out again. This paid off as it went off again during the night however it was restored after a few minutes.

Sadbh woke up just as Harjinder’s shift ended and she was well rested. It was time for breakfast and she helped Mommy make French toast.
She came running up to me waking me up to let me know that she was going to let me sleep in this morning.

The morning started off nice and sunny and since we had a birthday party for her friend, Cora, in a pumpkin patch up in Snohomish we were optimistic that it would not be such a muddy ordeal. Unfortunately, by the time we arrived at the farm, the weather had turned nasty and it ended up being very mucky and wet. The party was nevertheless fun and Sadbh really enjoyed spending time with all her friends.
There was so much to see and do at the farm and by the time we got back in the car Sadbh was wiped out. She snoozed for an hour on the way home.

Once home it was time to get Sadbh cleaned up and ready for trach care. After trach care we headed to our friends Suzie and Derek for dinner. Sadbh could not wait to spend time with Clodagh and Cormac.
They all had a great evening playing together and watching the Muppet Show and Tom and Jerry cartoons.





All the best,

Wayne, Katie and Sadbh

Saturday, October 25, 2014

Sadbh’s update – October 25th 2014


Sadbh woke up around six and spent the morning hanging out and watching videos with Harjinder. She was happy to see Mommy soon after and later, after Harjinder left, the two ladies got busy baking muffins.

The weather was terrible so it was a pajama day for Sadbh.
Both Sadbh and I played in the basement while Mommy was at yoga and later in the morning Ali-Baba came by to hang out.

Sadbh was so excited when Ali-Baba arrived she ran through the living room shouting “I’m so excited Ali-Baba is here”, over and over again. Then she climbed over the armchair in the corner of the room and dived behind to hide from her grandmother.

Sadbh started to get very tired by mid afternoon and with that she was also getting very cranky. Ali-Baba helped by reading a bunch of books to Sadbh and after trach care Sadbh was almost drifting off to sleep.
We did not want to make the same mistakes as last night so Katie did everything she could to keep her awake.

The rest of her evening was pleasant and she had a nice hot bath just before bedtime.
It took a little while for Sadbh to fall asleep and her sleep was delayed even longer due to the excitement of losing power. Since her humidifier and compressor both run on electricity we unhooked them and placed a humidifier nose on her trach.





All the best,

Wayne, Katie and Sadbh

Friday, October 24, 2014

Sadbh’s update – October 24th 2014


Sadbh had a good night and woke up moments before Harjinder’s shift ended. As soon as she was disconnected from her equipment she was off up the stairs to Katie like a shot.

We had a play date with Conor and Aibhin later in the morning and Sadbh was excited. She could not believe her eyes when she saw all the toys and did her best to hoard as many as she could. She even used me to watch over some of the toys in an effort not to share them with Aibhin and Conor.
Each of the kids had a fun time but they really clicked together when it was time to leave. Sadbh and Conor had a blast chasing each other around the living room and Aibhin really enjoyed all the commotion.

Sadbh was not ready to relax when we got home and wanted the fun to continue. I made her some lunch and despite having a full belly from Aoife’s house she gobbled it all down quickly.
I could tell that she was getting tired so I removed the cap from her trach and replaced it with a nose and sent her to bed. She was out in no time and slept for almost two hours without moving.

Once awake we headed up to the shops to get some groceries and ice cream. Sadbh could not believe all the options on display and it took forever to make up her mind. I helped and picked out something that I knew she would love and we made it home in time to wreck the basement before Mommy came home.

The promise of ice cream and a movie was incentive enough for Sadbh to clean up the basement.
We managed to get trach care out of the way before dinner and Sadbh got to enjoy her treat while watching the Smurfs movie.

When it came time for bedtime, Sadbh has a very difficult time getting herself to sleep.  She tried and tried, but she really just wanted to talk and tell stories.  She wanted to talk about Christmas and how on Christmas morning, Katie would have her braid and glasses and Sadbh was going to wake up and go get Grandad and Nana and then it was going to be snowing and she was going to turn Daddy into a snowman, and and and… the stories continued until Sadbh finally passed out, close to 10:30pm.  Hopefully she will sleep well.  Guaranteed she is going to have some interesting dreams.






All the best,

Wayne, Katie and Sadbh

Thursday, October 23, 2014

Sadbh’s update – October 23rd 2014


Sadbh slept great again and woke up happy to see me on the floor next to her. Mommy had snuck out of the room and Sadbh was excited to see her when she came back in.

After breakfast Sadbh and I put on our rain gear and headed out to clear the drive of fallen leaves and to dig up the potatoes from our garden. Sadbh was happy to help rake and kick the leaves around but less eager to dig for spuds.

Andrew dropped by for lunch and Sadbh was happy to see him. As Andrew and I chatted Sadbh got busy playing in her room with a couple of her dolls. She has this compression therapy device that we use when her lungs are congested and she loves to play with it. She typically turns it on and lets it spin around the floor or on the table. When Andrew was leaving I could hear it vibrate and when I went into her room to investigate I found that she had used a couple of her blankets as a housing to keep it in the one position as it rotated around and around. It was quite the set up and got me thinking that she could possibly have a future in engineering.

The rest of the day was spent playing and waiting for the medical supply company to come out to service her humidifier compressor. They had given me a window between noon and five and told me that they would give me a call two hours in advance to confirm the actual arrival time. Since I had not heard from them by four I called to find out what was going on and waited on hold for fifty minutes. At ten past five I heard a knock on the door and was happy to see the service guy there.

By dinnertime Sadbh was exhausted and not sure what she wanted. We managed to get her fed and ready for trach care. Trach care went well and it wasn’t long before she was fast asleep.





All the best,

Wayne, Katie and Sadbh

Wednesday, October 22, 2014

Sadbh’s update – October 22nd 2014


Sadbh slept soundly last night and despite getting up a number of times to untangle her and make sure that her humidifier hose was not filling up with condensation, Katie and I also had a good night sleep.

She was delighted to see us next to her when she woke up.

Sadbh and I had a good morning and for lunch we headed over to meet Timi, who is a good friend of mine from my old job.
Sadbh did not want to leave the house but once she had a couple of toys to bring she was in a much better mood about going.
It was great to see Timi and to catch up. Sadbh was very polite and also fascinated with Timi’s hair. I was able to relax as she was very well behaved during lunch.

Later in the day Sadbh got to have a play date with her friend Charlie from up the street. Charlie had just woken up from a nap so she was fully of energy. The two kids had a blast playing with all the toys in the basement and pretending to go camping in Sadbh’s wigwam. 
It was nice to see Sadbh having so much fun.

We interviewed a nurse tonight and we think she might work out. She still has to go through the on-boarding process with the agency so it might be a week or more before she can start working.





All the best,

Wayne, Katie and Sadbh

Tuesday, October 21, 2014

Sadbh’s update – October 21st 2014


Sadbh must have had a really restless night as she was exhausted all day, had big bags under her eyes and was extremely temperamental.
Even though Sadbh was still sleeping, Kim was hiding behind the chair when I checked in shortly after seven. She sat hunkered behind the seat until Sadbh finally woke up and started to ask for me. Very strange indeed.
I received a very vague rundown of how Sadbh’s night was and in a flash Kim was out the door.

Katie and I decided that today would be Kim’s last day taking care of Sadbh and thankfully the agency has a new nurse for us to meet tomorrow evening.
Just as well as I don’t think I can clean the toilet one more time after Kim. Did not realize that was going to be part of the deal with having home care nurses.

Sadbh’s day was hit and miss. After breakfast we headed down to Costco to pick up a few things. Sadbh was happy sitting in her stroller until she saw all the Christmas toys on display. She was desperate to get a closer look and despite being told that we would not be buying any toys today she got very upset and had a nice big tantrum in the store. I had anticipated a tantrum and purposely had her strapped into the stroller so she was a little easier to manage. That said it was still very stressful, as I had to sanitize and care for her trach as she started to have difficulty breathing after a very short while.

She was on and off for the rest of the day.
We had an appointment with Dr. Inglis at three and she was not really keen on going, especially after the last visit.
Katie arrived home shortly after two and we checked into the hospital on time at ten to three.
We waited for an hour and a half for Dr. Inglis and his assistant, Pam and when they finally arrived we found out that they had a much harder day than we did. Even though we were annoyed and tired from waiting for so long we quickly realized that it was nothing compared to the terrible news that two of their patients received over the previous couple of hours.

Dr. Inglis determined that Sadbh had not made any progress from the last visit and commented on how her voice was definitely not as strong as it was pre-operation. He believes that her voice will get stronger over time but advised against any further surgical procedures for fear of Sadbh losing her voice completely.
As a result we could be dealing with her trach for another few years at least. We scheduled a follow up appointment for mid January in the hope that there might be some healing improvement from the operation.

Sadbh was like a zombie for the rest of the evening and after dinner she got to enjoy a cup cake treat.
Since we do not have a nurse tonight I brought down a mattress so we will have a family sleep over in Sadbh’s room until the weekend when Harjinder’s next shift starts.





All the best,

Wayne, Katie and Sadbh

Monday, October 20, 2014

Sadbh’s update – October 20th 2014


Sadbh had another accident during the night and thankfully Harjinder was able to clean her up and get her into a dry pajama without waking her up.

She had a nice sleep in and did not stir until close to eight.
Katie and I had moved all her toys back down into the basement last night after she went to bed. When she realized that she would not have any toys to play with in the morning she got very upset. I did my best to calm her down and after explaining that she would get her toys later in the day after some home schooling and quiet time she was fine with it.

The rest of the morning went well and Sadbh enjoyed school and arts and crafts. We made some Halloween decorations that she was very excited about and she could not wait to show them off to Ali-Baba.

Ali-Baba came by shortly after noon and after trach care the two ladies settled down to a tea party.
Sadbh still has not figured out that it rude to slurp her tea but she has mastered the art of keeping her pinky held high as she tilts the cup back.

The next couple of hours was spent playing with Ali-Baba and when it came time for aAli-Baba to leave Sadbh was sad.

Sadbh’s evening was fun and she got to help Mommy make a pumpkin pie for desert after dinner.
She was ready for bed when the time came and insisted on wearing a nappy.
Once snuggled in she was out like a light in no time at all.






All the best,

Wayne, Katie and Sadbh

Sunday, October 19, 2014

Sadbh’s update – October 19th 2014


Sadbh had a really good night and woke up to

Katie had the morning off and got to spend it with a few of her friends. After breakfast Sadbh’s friend Dylan came over for a play date and the two kids had a fantastic time. They played with all of Sadbh’s food toys and baked up some tasty treats for Gerry and I.

I thought Sadbh would be wiped out when Dylan left but she seemed to have more energy than ever. She would not leave me sit still for a moment and I switched roles between Prince Hans and Kristoff, over and over and over. It was exhausting.

Sadbh was still full of beans when Katie arrived home and it took all our energy to get her calmed down so we could manage trach care.

With trach care done for the day we loaded up the car and headed over to Discovery Park for a walk. It was a beautiful day however Sadbh fell asleep on the journey there. Thankfully she was not too upset when we woke her up and we ended up having a lovely walk around the park.

We stopped off for pizza on the way home and the only thing that Sadbh had on her mind was ice cream. That said, she ate a lot of pizza and topped it all off with ice cream.

By bedtime she was delirious, as expected, but took a while to fall asleep.    





All the best,

Wayne, Katie and Sadbh

Saturday, October 18, 2014

Sadbh’s update – October 18th 2014


Sadbh woke up around three to let Harjinder know that she had an accident. Once cleaned up and with new bed sheets Sadbh was soon fast asleep and did not wake up until almost half past seven.

Mommy had yoga this morning so Sadbh and I had breakfast and got the day off to a good start playing and having fun.

Later in the morning Ali-Baba came by and after trach care the three ladies headed off shopping for clothes. Sadbh had a great time with Ali-Baba and she was treated to a hot chocolate and a warm pretzel.
She was so wiped out from shopping that she fell asleep in the car on the way home.

Her evening was spent playing with Mommy in the basement and after dinner she got to watch a movie.

Bedtime was fun as she was wired to the moon and full of energy. It took a snuggle with Mommy to get her off to sleep and it was not long before she was out.





All the best,

Wayne, Katie and Sadbh

Friday, October 17, 2014

Sadbh’s update – October 17th 2014


Kim was quieter last night, but Katie was still awake most of the night with little sounds. In an effort to keep the noise down as much as possible Kim adopted the concept of “if it’s yellow let it mellow, if it’s brown….” Needless to say, I had to look forward to flushing the toilet full of coffee pee first thing this morning after she left.

Unfortunately, Sadbh wet the bed during the night but Kim did a great job of cleaning her up without waking her up.

Sadbh had an appointment with Dr. Cavanaugh first thing this morning. Moments before we were ready to head out the door we received a call from Cavanaugh’s office explaining that he had a slight cold and it would be fine to cancel if wanted to avoid Sadbh getting sick.
We were very grateful and decided to reschedule the appointment for later next week.

Before lunchtime Sadbh and I headed out to the shops to get some groceries. Sadbh had fun in the first market as she got to push a mini trolley around the store.
When we arrived at Trader Joes things took a nosedive. Sadbh spotted a pack of cupcakes that she really wanted and once she realized that she was not getting them she threw a huge tantrum in the store.
It took a while to calm her down and it was stressful having to sanitize and to take her trach cap off so she could relax her breathing.

Once home it was time to Skype with Nana and Granddad and Sadbh was over the moon to see them. She asked if they were coming to spend Christmas with her and she got so excited when they said yes.

The rest of the day was spent reading and playing and trying to keep up with Sadbh’s high energy levels. She does not slow down and since she does not get to play with too many kids her own age she expects me to spend every waking moment playing with her.

In the evening we carved out one of her pumpkins for Halloween and Sadbh had a blast.

Trach care went well tonight and Sadbh headed to bed afterwards.





All the best,

Wayne, Katie and Sadbh

Thursday, October 16, 2014

Sadbh’s update – October 16th 2014


It was a strange night as there were lots of creaking sounds coming from Sadbh’s room. Shortly after midnight I checked the surveillance camera that monitors the nurse and noticed that Kim was working out in the corner of Sadbh’s room.
Katie woke up around five am to the same sounds and when she headed down to check on Sadbh, Kim explained that she was walking around the room to keep from falling asleep.

Sadbh had a good day but you could tell that she was a little bit on the cranky side and it was obvious that she did not have a good night sleep.

By dinnertime she was completely wiped out but still had a lot of energy. I gave her a bath just before trach care and then it was off to bed with her. 
Sadbh loves her bath and gets to bathe a few of her toys. At one point she slipped as she was turning around and almost went under the water. I grabbed her just in time and thankfully she did not get any water into her trach although it came very close. 
Katie had just walked into the bathroom at the same time and said that both Sadbh and I had a look of terror on both of our faces. 
 
She was in a great mood and happy to be sitting next to Mommy after being tucked into bed.
Just before falling asleep Sadbh said to Katie “I just want Sophia and Nini to come for Christmas”. Katie told her that Nana and Granddad were coming and Sadbh immediately perked up and asked if she could play with them.





All the best,

Wayne, Katie and Sadbh

Sadbh’s update – October 15th 2014


Sadbh woke up shortly after seven and managed to stay in bed for another thirty minutes or so. This was made possible since her nurse spent almost an hour hiding behind her chair……

We had a great morning and after Katie left for work Sadbh and I headed down to Ikea to get some shelves for her ever-growing toys.

On the way home Sadbh wanted desperately to hear her favorite song, which was sang over and over.

Once home I was grateful to have Sadbh help building the shelves.

By evening time Sadbh was delirious and it took a while to get her settled down for trach care.
Bedtime was easier and after a snuggle with Mommy she was soon fast asleep.





All the best,

Wayne, Katie and Sadbh

Tuesday, October 14, 2014

Sadbh’s update – October 14th 2014


Sadbh slept like a log all night and did not stir until almost eight. She was in a very good mood when I went in to her and as soon as she was unhooked from all her equipment she shot off upstairs to hang out with Mommy.

We had a very good day doing the usual things. Sadbh even got to chat with Nana and Granddad on the phone and was chatting up a storm. I’m not sure how long they were still on the line for as she often hangs up accidentally from time to time.

She even got to change out the trach on one of her dolls this afternoon and I was able to capture it on video.

We managed trach care just before bedtime and as soon as we finished Sadbh jumped into bed and after twenty minutes or so of acrobatics in her bed she finally drifted off to sleep.





All the best,

Wayne, Katie and Sadbh

Monday, October 13, 2014

Sadbh’s update – October 13th 2014


Sadbh had a good night but woke up around half past five. She really wanted Mommy however Harjinder was successful in getting her back to sleep. She slept soundly until eight when I went in to wake her up.
Katie and I had an appointment downtown at nine so it was a busy morning getting Sadbh dressed, fed and out the door. She was great and allowed us to get to our appointment without any delays. I did have to listen to her new favorite song over and over at top volume all the way downtown though.

Once home Sadbh wanted to rake the leaves in the back yard. She had so much fun raking and then running through the leaves while making a big mess.

Ali-Baba came by to help with trach care and Sadbh was thrilled to see her. Once trach care was finished it was time for the two ladies to have a tea party.

The rest of the day was spent reading books and playing with her toys. She made a huge mess in the basement but thankfully helped clean up when she was finished.

In the evening she got to Skype with her cousin Lulu in Portland to wish her a happy birthday and after that it was time for bed.





All the best,

Wayne, Katie and Sadbh