Sadbh’s update – November 30, 2014

Sadbh woke up bright and early after another restless night sleep. She was tossing and turning all night long.

Despite this, she was in a very good mood and came flying up the stairs to us as quickly as she could.

Katie’s friend, Michelle, came by for a visit and Sadbh was very happy to see her. She was due to arrive while we were managing trach care so we left the door unlocked in case she did arrive.

Sadbh was excited to see Michelle and after lunch they both headed out into the garden to build a snowman. Sadbh had so much fun and she got to help Michelle build a miniature version of Olaf, her favorite snowman from the movie Frozen.

She had so much fun playing with Michelle and was wired to the moon when Michelle left.

Later in the evening we headed over to Clodagh and Cormac’s for a play date and then on to a restaurant on Lake Union to check out the Christmas Ship Festival. There we met up with Aidan and Brian and when the boats sailed by Sadbh and her friends were very excited. We headed out onto the dock and despite the cold the kids really enjoyed seeing the boats sail by.

Sadbh was very tired when we got home so putting her to bed was very easy.

New photos.

Photos from November 30 2011.

Photos from November 30 2012.

Photos from November 30 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 29, 2014

Sadbh was fairly restless throughout the night but when she woke up she was so excited to find out that it had snowed during the night.

As soon as Harjinder unhooked her she went running through the house shouting about the snow.

She came running upstairs to Katie and me and even called for Harjinder to come up. She started off calling “nurse, nurse” and then asked Katie what her name was. Once Katie informed her of Harjinder’s name she started to call “Harjinder, please come up”. Obviously Sadbh has no idea of what privacy is. 
When it came time for Harjinder to leave Sadbh called out "Merry Christmas". It seems that she associates snow with Christmas.

After breakfast and as soon as Sadbh was wrapped up in very warm clothes it was time to head out to play in the snow. It was bitter cold as there was a stiff breeze blowing but this did not deter Sadbh. She had a brilliant time and could not stop eating snow. Thankfully it was all clean fresh snow.

Katie and I had a date night planned and Sadbh got to spend a few hours with her ex-nurse supervisor, Caity. She was so excited to see Caity and immediately they got stuck into playing with Sadbh’s toys.

Sadbh had a fantastic evening and was quite exhausted by the time we arrived home.

She was very cranky and did not want the fun to end. As soon as Caity left we changed Sadbh into her pajamas and got her ready for bed.

It did not take long for Sadbh to drop off to sleep. She was out as soon as her head hit the pillow.

New photos.

Photos from November 29 2011.

Photos from November 29 2012.

Photos from November 29 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 28, 2014

Katie’s wake up call this morning was in the form of Sadbh jumping on top of her from her bed. She was after a good night and woke up full of energy.

It was a very wet day so Sadbh was housebound all day. She did not mind and spent the entire morning in her pajamas.

For some reason or other she would only wear one sock but she was happy and she looked very funny.

Katie and I had an appointment for a ”pre-birth” tour at the hospital but unfortunately we could not find anyone to watch Sadbh. Katie stayed at home with Sadbh while I went on the tour and Sadbh was thrilled to have Mommy all to herself. The two ladies had a fantastic time playing and having fun.

It was very surreal being back at the hospital where Sadbh was born and to hear the cries of a newborn baby a couple of rooms away. 

The nurse that was guiding the tour went through all the details of what to expect after the baby arrives and she downplayed what happens when things don’t go as planned. Memories of the day when Sadbh was born came rushing back to me and I knew exactly what all the equipment was for and exactly where the NICU was located.

Later in the day Katie and I managed trach care and then it was off down to the basement with Sadbh for some more fun with her toys. We have a nice old wooden chest in which we store a lot of Sadbh’s cuddly toys. She found a pair of swimming goggles and decided that the wooden chest would be the ocean and off she went for a dive. 

Oddly enough, this time last year we had Sadbh's friends, Cora and Luna over for Thanksgiving and both Sadbh and Cora spent a great deal of time in the wooden chest.

After dinner we watched The Lego Movie. We thought it might be a little old for her but she loved it and immediately wanted to play with her Lego’s as soon as it was finished.

She was exhausted when it came time for bed however she was wired to the moon so it took a while to calm her down and get her off to sleep.

She was not too excited about having a nurse working tonight and she told Mommy that she was going to sit up and stare at the nurse when she woke up in the morning. Katie explained that it would be nicer to be polite to Harjinder and that she could ask to be allowed upstairs as soon as she wakes up. Sadbh liked this idea and agreed that she would do this.

New photos.

Photos from November 28 2011.

Photos from November 28 2012.

Photos from November 28 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 27, 2014

Katie spent the night with Sadbh and thankfully Sadbh slept so soundly that Katie only had to check on her a few times.

Sadbh was thrilled to see Mommy next to her when she woke up.

We had a busy day getting ready for Thanksgiving dinner and Sadbh was quick to help out. She started off by setting the table and as soon as Ali-Baba arrived she got busy playing with Ali-Baba and her toys.

Katie and Ali-Baba managed trach care while I was finishing getting dinner ready. As soon as they were done it was time to eat.

Sadbh had a fantastic day and by the time Ali-Baba and Kirk left she was bouncing off the walls.

New photos.

Photos from November 27 2011.

Photos from November 27 2012.

Photos from November 27 2013.

All the best,

  

Wayne, Katie and Sadbh

Sadbh’s update – November 26, 2014

Sadbh had another great night and did not wake until eight.

Katie had left early and Sadbh was not happy with this discovery. It did not take long for me to cheer her up and soon we were having breakfast and getting ready for a play date with Conor and Aibhin.

Sadbh’s play date with her friends was fun and Sadbh got to play with a bunch of Aibhin’s new birthday gifts.

The three kids had a lot of fun as usual and when it came time for us to leave Sadbh was not very happy.

We had a very good afternoon although it took over an hour for Sadbh to eat lunch.

Mommy arrived home from work a little earlier than usual and Sadbh was beside herself with delight.

We quickly got trach care out of the way and afterwards we had dinner with our friend Neil. Sadbh was very chatty during dinner and kept us all entertained.

Before bedtime Sadbh and I climbed into her wigwam to watch some cartoons. Before long she was off to bed and fast asleep.

New photos. 

Photos from November 26 2011. 

Photos from November 26 2012. 

Photos from November 26 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 25, 2014

Sadbh slept like a log and woke up well rested shortly after seven. As soon as she woke up she jumped out of her bed and into mine for a snuggle. It was a great way to start the day.

Sadbh had a great day and it was spent making arts and crafts for Thanksgiving and also for Christmas. Her attention span is not quite what I would like it to be so I ended up doing the bulk of the work. Sadbh had a lot of fun helping out and I enjoyed teaching her how to use a scissors and all that good stuff.

Katie had to work late this evening so Sadbh got to stay up a little later than usual.

As soon as dinner was over it was time for trach care and then Sadbh was off to bed. Katie read Sadbh a bedtime story and Sadbh fell asleep quickly afterwards.

We were meant to meet a new nurse today for a meet and greet but the meeting was postponed until next week.

New photos.

Photos from November 25 2011.

Photos from November 25 2012.

Photos from November 25 2013.

All the best,

            Wayne, Katie and Sadbh

Sadbh’s update – November 24, 2014

Sadbh slept well throughout the night and woke up shortly after Harjinder left.

To help keep Sadbh from waking up too early, Harjinder has started turning off the lights from six onwards and this paid off all weekend. Unfortunately this is proving difficult for Harjinder to stay awake. We really appreciated her honesty and will need to figure out a solution that works best for everyone.

Sadbh and I had a busy morning and as soon as breakfast was over we were off out running errands. It was an exhausting morning as we had six stops and each time it required off loading and loading up all her equipment each time. It’s never easy and by the time we got home I was wrecked tired.

After lunch Sadbh and I got stuck into a few books and once finished it was playtime. She had a fun evening and was very tired when it came time for trach care and then bed.

New photos.

Photos from November 24 2011.

Photos from November 24 2012.

Photos from November 24 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 23, 2014

Sadbh slept in until nine. As soon as she was up out of bed she came running through the house announcing that she had a nice long sleep. Unfortunately, she must have forgotten that she did not go to sleep until ten so she actually slept for the same amount of time as usual. That said, we were thankful that she did not wake up at half past seven as usual.

Sadbh and Katie had a lazy morning and Sadbh really enjoyed being cozy in her pink polka dot robe.

Katie and I managed trach care just before lunch and Ali-Baba dropped in for a visit half way through. Sadbh was delighted with herself and as soon as we were finished with trach care she gave Ali-Baba a huge hug.

The ladies had a fun afternoon and Sadbh got to enjoy a nice tea party.

Later in the day Katie was going through boxes of Sadbh’s baby clothes and toys to sort out items for baby Taco. Sadbh was thrilled and had so much fun playing with all her old baby toys.

By dinnertime Sadbh was completely and utterly exhausted. She managed to eat most of her food and then it was off to bed.

She was out like a light much earlier than usual, hopefully she will make it until half past seven at the earliest.

New photos.

Photos from November 23 2011.

Photos from November 23 2012.

Photos from November 23 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 22, 2014

Sadbh was restless throughout the night and woke up shortly before six. Harjinder turned off her reading light to help Sadbh go back to sleep and with that Sadbh reached up, turned on the light over her bed and gave Harjinder a dirty look.

She finally went back to sleep and woke up an hour and a half later as Harjinder was getting ready to leave.

She was very disappointed to see me taking over from Harjinder as she had expected Mommy to be the one taking over. Once she was unhooked from her equipment she was off up the stairs as quickly as possible.

Sadbh had a play date with Ixchel today and she was extremely excited about it.

Katie and I got trach care out of the way beforehand and as soon as we finished up we headed off.

Sadbh and Ixchel had a great time and they even got to bake cookies.

It was a fun afternoon and when it came time to leave Sadbh was not pleased. She was very tired and shortly after we left she fell asleep in the car.

Sadbh was a little cranky for the rest of the evening but her mood picked up when she realized that we were going to have a family movie night.

She quickly gobbled down her dinner and once finished we headed down to the basement to watch Despicable Me 2. She loved it but by the time the movie finished she was very tired.

Unfortunately, she had no desire to go to sleep and she was still wide-awake when Harjinder arrived.

New photos.

Photos from November 22 2011.

Photos from November 22 2012.

Photos from November 22 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 21, 2014

Sadbh woke up shortly after seven and demanded that I get up immediately. She even started to stomp her feet on my stomach so I had to explain to her that in the interest of having a great day it was imperative to start the day off nice and to be extra polite to those of us who take such great care of her. It worked and soon she was snuggled up next to me telling me how much she loved me and how much fun she wanted to have today.

As a result we had a great day. After home school we got stuck into painting her pottery snowmen and then we painted parts of her rocket ship.

It was a wet miserable day outside so Sadbh and I read a bunch of books and after lunch we got busy playing with her toys.

We had dinner plans with our friend Carey this evening up on Capitol Hill so after feeding Sadbh a nice big dinner it was time for a bath and as soon as Katie arrived home we got trach care taken care of.

Sadbh was very well behaved throughout dinner but when it came time to leave she was extremely tired and extremely wired from the yummy cookie that she had for dessert.

It was well past her bedtime but we managed to get her cleaned up, tucked into bed and off to sleep in time for Harjinder to start her shift.

New photos.

Photos from November 21 2011.

Photos from November 21 2012.

Photos from November 21 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 20, 2014

Sadbh had a very good night and woke up shortly after seven. She quickly crawled into bed next to me for a quick snuggle before asking to be unhooked from her wires and tubes and heading up to Mommy.

Despite not getting a good night sleep myself, I much rather spending the night along side Sadbh rather than having a nurse watch over her so she can get a good night’s rest.

We had a good day and after home school we got to build a rocket ship out of cardboard boxes from her medical supply order.

She was delighted with herself and for the rest of the day she made numerous trips to the moon and back.

Once dinner was finished it was time for a bath. Sadbh loves her baths and could not wait to get in for a soak and to play with her toys. She must have been extremely tired as she had a huge melt down and needed to have her trach cap removed so she could breathe properly.

After several failed attempts we decided to scrap the bath idea and get her ready for trach care and bed.

New photos.

Photos from November 20 2011.

Photos from November 20 2012.

Photos from November 20 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 19, 2014

Sadbh slept like a log and woke up around twenty past seven. She could not wait to get upstairs to see Mommy.

Both Sadbh and I were knocking heads for the first part of the morning but thankfully we listened to the voice of reason, Katie, and got along great for the rest of the day.

Last weekend Sadbh got to watch “A Bugs Life” on the TV. In one of the scenes there was a few flies being served in a restaurant and when the server delivered their plate of “poo poo plater” Sadbh could not stop laughing. She thought it was the funniest thing in the world.

For the past few weeks we have being teaching Sadbh to ask to be excused from the table when she is done with eating. Once excused she then needs to thank whomever prepared the meal by saying “Thank you for breakfast, lunch, dinner, etc”.

In the last week or so she decides to be funny by thanking us for a different meal than what was served. For example, for breakfast she will say “thank you for dinner” and then start laughing.

Today when she was finished having lunch with Ali-Baba and me she asked to be excused and then said “thank you for the poo poo platter” before laughing hysterically. It was brilliant.

Ali-Baba came by to hang out with us and after we got trach care out of the way she and Sadbh got busy playing nurse and patient. At one point Sadbh pretended that she had broken her arm so Ali-Baba dressed it up with a sock to look like a cast and used Sadbh’s tights as a sling. Sadbh was well pleased with herself.

We had a nice evening and after dinner Sadbh got to load up on some sugar. By bedtime she was like the Tasmanian Devil as she bounced from wall to wall in her room. Eventually she crashed and fell into a deep sleep.

New photos.

Photos from November 19 2011.

Photos from November 19 2012.

Photos from November 19 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 18, 2014

Sadbh slept much better and did not wake until half past seven. She was in a great mood and ready to get the day started.

I woke up every forty minutes or so throughout the night to untangle Sadbh and to also drain off her humidifier hose.

Sadbh and I had a great day and at one stage while we were out shopping for groceries she fell asleep in the car. She had her trach cap on and thankfully had no problem breathing.

Sadbh was still asleep when we arrived home and this made for a very heavy load. I must have been carrying at least sixty-five pounds between Sadbh, all her medical equipment, my camera and a few other items. The tricky part was when I got in the door and had to get my shoes off as quickly as possible so I could run through the house to turn off the alarm. I made it with a few seconds to spare and most importantly without waking Sadbh up. She woke up a few moments later when I laid her down on the couch and when I started to off load all the bags.

I had a dentist appointment this evening so Sadbh was over the moon when Mommy arrived home a little earlier than usual. As soon as Sadbh had finished dinner she dragged Katie down to the basement to play with her toys.

When I got home she was just starting trach change on one of her dolls and she had me get all her trach supplies set up.

She went through the whole process with help from Katie and I and she even had me video record it.

When it came time for Sadbh’s trach care she was completely exhausted. She had a bit of a melt down beforehand and it took a lot of love from Mommy to calm her down.

Once trach care was done Sadbh had a snack and then it was off to bed. She was out like a light in no time.

New photos.

Photos from November 18 2011.

Photos from November 18 2012.

Photos from November 18 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 17, 2014

Sadbh tossed and turned all night and was wide-awake by half past six. I noticed on the monitor that her humidifier hose was full of water.

We had instructed Harjinder to check and drain the hose every hour and it was obvious by the amount of water that it had been a while since it was last drained.

Sadbh had a good day and as the day went on her energy level increased. At one point we headed out for a walk and it took all my energy to hold Sadbh back.

Earlier in the day Sadbh mentioned that she wanted to wear her trach cap when she went to bed. By bedtime her strider was very evident and she had no desire to wear her cap.

We managed trach care without any problems and Sadbh fell asleep as soon as she was tucked into bed.

The nursing agency has not made any progress in finding any new nurses so I’ll be spending the week sleeping in Sadbh’s room.

New photos.

Photos from November 17 2011.

Photos from November 17 2012.

Photos from November 17 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 16, 2014

Sadbh’s night was the same as the night before and when she woke up she could not wait to get up to see Mommy. She even invited Harjinder to come up with her but thankfully Harjinder knew better than to come up stairs to our room.

Yesterday, despite all our best efforts Sadbh somehow found a catalog for American Girl that recently came in the post. She could not believe her eyes and wanted everything that she saw. This morning when she came up to our room she asked where her “mazagine” was. Katie and I were in hysterics laughing at how she was trying to pronounce magazine.

Sadbh was in for a big treat this morning, her friend Clodagh was coming by for a play date. She got dressed in record time and did not put up a fight when it came time to brush her hair.

Clodagh arrived with a princess Anna dress for Sadbh and both girls got busy singing and dancing to Frozen.

The fun and games continued and later the girls took turns playing doctor and patient.

Later they headed out to play in the back garden and soon they found a block of ice to keep them busy with for a while.

It was a great day and Sadbh was so happy to have Clodagh to spend the morning with.

New photos.

Photos from November 16 2011.

Photos from November 16 2012.

Photos from November 16 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 15, 2014

Sadbh was flopping all over the place throughout the night. When Katie brought it up with Harjinder, Harjinder said that it was a typical night for Sadbh. This goes to show that Sadbh does much better when we do not have nurses watching over her.

Sadbh woke up shortly after seven and was delighted to see Mommy take over. Sadbh and Mommy snuggled for almost an hour reading books and then it was time for breakfast.

Katie had yoga this morning so I got breakfast ready and Sadbh got to fill her belly with yummy banana pancakes.

Sadbh had a great day and later in the afternoon Mommies friend Jennifer came by for a visit. Sadbh could not wait to have a tea party and she showed Jennifer how to drink tea with her pinky up.

By dinner Sadbh was a complete zombie and the only way to get her to eat her dinner was to put on a movie to keep her focused. She devoured her food and when it came time for bed she was out in seconds.

New photos.

Photos from November 15 2011.

Photos from November 15 2012.

Photos from November 15 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 14, 2014

Sadbh slept like a log and woke up shortly after six. I explained that it was still nighttime and that she should go back to sleep. Thankfully she slept on for another two hours.

Sadbh and I had a great day together. I was stiff as a board from sleeping on her bedroom floor all week and was not as mobile has I had been earlier in the week. That said we got to work on her fairy house and read countless books.

Sadbh got to watch a movie after dinner tonight and she was very pleased with herself afterwards as we got her ready for trach care.

Trach care went well and as Sadbh was getting ready for bed she told Mommy that she did not want a nurse to work tonight but wanted me to sleep on the floor next to her.  She also told Katie that the nurses make too much noise and keep her awake in the night

I think our nights of nursing coverage are numbered as this week has proven without a doubt that Sadbh gets a much better night sleep when the lights are out and when there is complete silence in her room throughout the entire night.

I can’t say the same for me, although it’s definitely more important for Sadbh to get the rest that she deserves.

The nursing agency has another candidate for us to meet but this new nurse might not be 100% available and is waiting to find out is she will be reassigned to her current case. I explained that I did not want to interview and on-board another nurse that might jump ship within a few weeks and to have to go through the entire ordeal again. It took a few e-mails back and forth for the agency to understand the affect this has on our family and not that they get it they will keep that in mind when sourcing new nurses. It can be extremely frustrating.

New photos.

Photos from November 14 2011.

Photos from November 14 2012.

Photos from November 14 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 13, 2014

It was yet another uneventful night for Sadbh and as soon as she woke up we both headed up stairs.

We spent the morning working on a cardboard house so Sadbh could leave it out in the garden so the fairies would have a warm place to stay when they came by. It’s a work in progress and it will make for fun project to try and finish tomorrow.

After lunch we headed up to Madrona to the playground. It was quite cold out so Sadbh was bundled up nice and warm for the journey. She had a lot of fun playing on the swings and slides and afterwards we stopped off for a hot chocolate and then headed up to Capitol Hill and to Trader Joes.

Sadbh fell asleep as soon as we arrived at Trader Joes and slept for an hour and a half. She was completely wiped out and needed the nap.

Her evening was spent playing with her toys in the basement and she did not want to stop even though it was bedtime.

We managed trach care and then she was off to bed.

New photos.

Photos from November 13 2011.

Photos from November 13 2012.

Photos from November 13 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 12, 2014

Sadbh had another good night and despite the dropping temperatures she was snuggled up nice and warm all night. The lower temperature did cause the air in her humidifier hose to condense quite a bit and I ended up having to drain it more frequently throughout the night.

Sadbh had a great day and got her fill of reading books, playing and hanging out with Mommy as soon as she got home from work.

Katie and I managed trach care just before Sadbh went to bed and after a snuggle with Mommy Sadbh dropped off to sleep.

We met with a new nurse tonight and decided almost immediately that she would not work out. She was ice cold and made no effort whatsoever. She may have been very nervous but our initial gut feeling is that she is not a good fit. It was a very weird experience and neither Katie nor I had a good feeling about her.

New photos.

Photos from November 12 2011.

Photos from November 12 2012.

Photos from November 12 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – November 11, 2014

Sadbh slept great through the night but I had to untangle her a number of times and I also had to drain off her humidifier hose five times due to the amount of condensed water that accumulated in it.

I woke up with Sadbh jumping out of bed and onto my belly demanding for me to get up. It was not exactly how I wanted to wake up but she was in a good mood so I suppose I had to get over the rude awakening.

We had a fun day and this morning Sadbh danced along to a few songs that played on the radio. She really enjoyed dancing to Jane’s Addiction, Joy Division and The Sugarhill Gang. She had a great morning.

The rest of her day was very good although she did start coughing non-stop in the early evening. At one point she asked me to give her a suction however she still coughed for the rest of the evening.

By bedtime she was tired and spacing out. We managed trach care after I changed out her humidifier equipment and as soon as we finished up she jumped into bed and went straight to sleep.

New photos.

Photos from November 11 2011.

Photos from November 11 2012.

Photos from November 11 2013.

All the best,

Wayne, Katie and Sadbh