Sadbh’s update – November 30th 2012

Sadbh had another wondering night sleep and did not wake until 7am.

I had the day off work and took over from Julie at 6am. When Sadbh woke she stood up and gave me the biggest smile ever. She was in such a giddy and playful mood, it was so much fun.

After changing out of her pajamas it was time to head up to see mommy. Sadbh could not wait and was delighted as soon as we walked into the room.

Sadbh had a two-hour breakfast and afterwards she managed to get out for a quick walk in between rain showers and she had a great time.

She was hungry when she arrived back in the house and afterwards the games continued.

Trach care was late and thankfully everything went well. She slept for an hour and a half and woke up hungry.

She had a very active evening and by 6pm she was looking very tired indeed.

It was way too early for bedtime and we also had plans to visit Aoife, Martin and Conor to see their new baby Aibhin.

Sadbh was very sleepy by the time we arrived and even though Conor was eager to play, she was very shy. It did not take long for her to come out of her shell and both kids had a great time playing.

Sadbh did get very jealous when Katie was holding Aibhin and we were both very surprised. Conor was great at distracting her and both of them started chasing each other up and down the hall way.

She was exhausted by the time we arrived home and was fast asleep by 9pm.

It was a hectic but fun day and Sadbh had a great time.

New photos.

Photos from November 30 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 29th 2012

Thankfully Sadbh had a great night sleep. She woke up shortly after midnight and put her arms up to Julie to be picked up. Julie explained that she should go back to sleep, Sadbh shrugged her shoulders and plopped back down to sleep.

She slept right through until 7am and woke up very happy and in a playful mood.

Shortly afterwards Katie turned on the radio and the Stone Roses was being played. Sadbh put on her hat and started dancing. She then spotted Katie’s hat hanging out of her coat pocket so she grabbed it and placed it on Katie’s head and both ladies kept dancing to the music.

Sadbh was having so much fun that she did not stop for breakfast until 8:30.

After she was full, it was time to head down to the basement to play again.

Later in the morning they all bundled up and headed out for a walk. The weather was very changeable so Sadbh and her entourage stayed within a couple of blocks of the house.

I’m sure it was quite the sight to see three adults being led around by a 19-month toddler.

Trach care went well this afternoon and Sadbh slept for almost two hours as she cuddled her cat Meow. She woke up in a great mood and after a bite to eat the fun continued.

Just before dinner as Sadbh drew with her crayons, she asked for bubbles so we capped her trach and started blowing bubbles in the bathtub. She was in her element and tolerated the cap for over 10 minutes.

This was a great result considering that we had not capped her trach since the weekend.

Just before bedtime she got all excited and wanted to dance throughout the house. She insisted that Katie and I join her and it was so much fun.

All the dancing tired Sadbh out and when it came time for bed she was in a deep sleep within no time.

New photos.

Photos from November 29 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 28th 2012

It was a very rough night for us all and Sadbh had no intention of sleeping.

She woke up shortly after midnight and for the next few hours she was very eager to go outside and play.

It was a very long and exhausting night, however Sadbh did finally settle down and she even slept in until 8:30.

Caity returned to work today after her vacation and Sadbh was happy to see her. Caity will care for Sadbh until her replacement starts.

Sadbh had a fun morning and she even got a chance to head out for a walk since there was a break in the weather.

Trach care was late again today and Sadbh slept for a couple of hours afterwards. She had a wonderful sleep and woke up in a great mood.

Sadbh had a fun evening and could not stop dancing around the house. It was hilarious to watch her stomping her little legs and waving her arms in the air.

It did not take long for Sadbh to fall asleep this evening and just before she nodded off she insisted on cuddling with her stuffed cat that she calls Meow.

Larissa was still sick this evening and thankfully Julie was able to cover her shift.

Julie needed to be certified by the nursing supervisor so Sadbh had an audience tonight as she slept.

Hopefully Sadbh will get a good night sleep and not feel the need to go outside to play, at least not until tomorrow anyway.

New photos.

Photos from November 28 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 27th 2012

Sorry for the delay in posting yesterdays blog, our internet was down...

Sadbh slept great all night and did not wake until 8 on the dot. She was in a great mood and after getting dressed she was eager for breakfast.

It was a lovely sunny morning and Sadbh got to head out for a long walk with Nana and Granddad. She wore her Passy Muir Valve the entire time and she was chatting up a storm.

Sadbh arrived home just in time for Ali-Baba’s visit. The fun and games continued until Sadbh started to get tired so they got her ready for a bath and trach care.

Sadbh slept right through trach care, however she only had a thirty-minute nap and as soon as she woke up she was ready for her lunch.

As soon as her belly was full she was then bundled up in nice warm clothes and off out for another long walk in the sunshine with Nana and Granddad.

She really enjoyed being out in the fresh air for the second time today and they made it back just before it got dark.

Our day nurse is due back from her vacation tomorrow, however we got word from the agency that she will not be working with Sadbh for much longer.

The agency scheduled an interview with a replacement nurse this evening.

Just when you think you finally have all the nursing coverage figured out, along comes another wrench that sets us back.

Sadbh was exhausted by 6pm and she was very cranky in the two hour run up to her bedtime.

Unfortunately, our night nurse Larissa called in sick tonight so Sadbh gets to sleep with us upstairs.

She fell asleep within a couple of minutes of being dressed in her pajamas so hopefully she will sleep through the night.

Hopefully Larissa feels better very soon also.

New photos.

Photos from November 27 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 26th 2012

Ice cream before bed turned out to be a bad idea. Sadbh was very restless during the night and ended up waking up at 2am. Thankfully Julie was able to keep her entertained until 3:30 when she finally started to get sleepy again.

This time she slept great and did not wake until 8:45am.

She had a good appetite and was ready for her breakfast.

It was a cold but sunny day and after the fog cleared Sadbh, Nana and Granddad all headed out to play in the garden.

Sadbh was delighted and very happy to be outside. They even went for a quick walk around the neighborhood and Sadbh got to burn up some energy.

Ali-Baba stopped by to help with trach care around lunch time since Sadbh did not have a nurse working today. Sadbh did not take her nap until 3am, so Ali-Baba got a few extra hours of playtime in.

Trach care went well and Sadbh slept for almost two hours afterwards.

Just as she was finishing up dinner, she received a visit from our friend Mary who was visiting from NYC.

Sadbh was a little shy at first, but soon warmed up.

She was very excited to see the near full moon shining in the cloudless sky and took turns showing us all. At one stage I found a nice viewpoint from the upstairs landing and both Sadbh and I hung out waving and blowing kisses to the moon. Sadbh was so happy.

We had a great evening and when it came time for Sadbh to go to bed she was very ready. It did take a while to get her to sleep, but since she did not have ice cream and chocolate cake this evening, we feel good that she will get a much better night sleep.  Just before dozing off to sleep, Sadbh asked Katie about Nini.  Katie told Sadbh that Nini loved her and asked Sadbh if she wanted to see Nini in the computer soon.  Sadbh said “yep” and went to sleep.

New photos.

Photos from November 26 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 25th 2012

Sadbh woke up at 10pm and did not want to go back to sleep.

She was thirsty for water and after she was asked if she was hungry she replied with “yeah!”.

She had no intention of going back to sleep so we sat up and watched a little Sesame Street for a while.

By midnight and after a humongous poop, her eyes were starting to get heavy so we all headed up to bed.  She drifted off into a deep sleep and slept well until 6am.

Katie did have to suction Sadbh’s trach around 2:30am, but other than that Sadbh slept well. When she woke up at 6 she joined us in bed and slept until 9:30.

After breakfast, the fun and games started and Sadbh had a great morning.

Trach care was much later today than usual since Sadbh slept in so late.

She was getting tired but we decided to head down the street to a local Christmas tree seller to get our Christmas tree. Sadbh was delighted to be out of the house and in the sunshine. She was fascinated with all the trees and couldn’t believe her eyes when we started off walking home carrying one of the trees.

After arriving home and getting the tree into position it was then time for Sadbh’s bath and trach care. She could not stop saying “tree” and was walking around the house with a huge smile on her face and making the sign for tree.

It did not take long to get her to sleep and once she was out trach care was quick and easy. She slept for over two hours and as soon as she woke up she could not wait to get into the living room to check out the tree.

Her evening was full of excitement and after dinner she had chocolate cake and ice cream for dessert. She couldn’t get enough and by the time she was done she had more dessert on her hands and face than she did in her belly.

After dinner it was time to get back to work on the tree and Sadbh was very helpful. We did learn very quickly to keep the fragile ornaments up high and out of Sadbh’s reach. This was a result of Sadbh reaching up and grabbing a glass snowman and chucking it into the corner.

Sadbh was in a great mood when it came time for bed. She gave everyone a big hug and a kiss before going to sleep.

New photos.

Photos from November 25 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 24th 2012

Sadbh slept through the night and did not wake until I brought her up to bed at 6am after the night nurse left.

She was in such a playful mood and did not want to go back to sleep. I brought her back downstairs for breakfast so Katie could sleep in for a while longer.

She had a big breakfast and both of us got to catch up on her Signing Time DVD.

After a couple of hours of playing, Sadbh wanted to head back upstairs to see Katie. The radio was on in the bathroom and our local college radio station was playing its usual Saturday morning reggae program. Sadbh was in her element and could not stop dancing. She even figured out how to turn the volume up full blast and kept dancing.  It was precious.

Sadbh’s monthly trach change was scheduled for today so we made sure that she was good and tired when it came time for her nap. She really enjoyed her bath and it was a struggle to get her out. When she finally fell dozed off she fell into a deep sleep allowing us to manage trach care and the actual trach change without any problems. Even though it is usually a very stressful procedure, today’s trach change worked out very well.

Sadbh woke up as soon as we placed her in her cot so we prepared her lunch and afterwards we all headed off up to Capitol Hill for a walk.

It was a lovely day and Sadbh was very happy to be out and about.

We bumped into Sadbh’s friend Conor and his father Martin and got to hear all about Conor’s one-week-old sister, Aibhin.

Sadbh was fast asleep in her stroller by the time we were half way home and since it was not quite her bedtime we had a tough time getting her prepared for bed. Once she woke up she was full of smiles and we even got a few nice cuddles from her.

It was a very good day and Sadbh had a lot of fun.

New photos.

Photos from November 24 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 23rd 2012

Sadbh had another good night sleep and she only woke up when Katie brought her upstairs at 6am after Julie finished her shift.

She was still quite sleepy, but was happy to be awake and did not want to go back to sleep.

She had a very busy morning playing with Katie. Eventually I took over and Katie headed up to bed for a couple of hours since she was awake so early.

Sadbh was ready for her nap a few hours later and she really enjoyed her bath. She got very upset when I tried to get her to sleep and it took a good 30 minutes to get her to calm down. She really wanted Katie and she kicked up such a fuss, it was very upsetting to see her so distraught.

Thankfully my persistence paid off and Sadbh finally fell into a deep sleep.

Trach care went well and her neck looked good. One side is still slightly sore looking, but overall it was healing great.

Later in the evening we headed downtown to see the Christmas tree lighting ceremony. Traffic was terrible but we made it in time to see the fireworks display and to meet up with Theresa, Orla, Amy and Jean. Sadbh was thrilled to be downtown and was fascinated with all the activity.

We also got a chance to venture through the Pike Place Market and Sadbh even got to check out the bubble gum wall that is located in an alley below the market.

Despite the horrible weather, Sadbh had a really good day.

New photos.

Photos from November 23 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 22nd 2012

Sadbh slept well and woke up at 5am, a little earlier than usual.

Her new nurse, Julie, took good care of her until we went down at 5:45 and Sadbh was in a very good mood.

We hoped that Sadbh might want to join us for a sleep in, but she was too excited and wanted to play.

By 7am she was back downstairs and getting ready for her breakfast.

Since it was Thanksgiving, it was a very busy morning and Sadbh got to take turns playing with each of us.

By 10am she started to get very tired so Katie and Granddad started the trach care proceedings. She really enjoyed her bath and did not want to leave. As soon as she was wrapped in her towel she started to doze off.

Trach care was very straightforward and Sadbh slept for over three hours. We could not believe how tired she was. She sat up a few times during her nap, but she would lay back down and go back to sleep. We were all amazed.

She woke up shortly before Ali-Baba, Kirk and their good friend Kathy arrived and she impressed them all in her lovely dress. She looked fantastic.

Dinner was great and Sadbh enjoyed some turkey and other yummy thanksgiving staples.

She could not get enough ice cream when it came time for dessert and Ali-Baba was more than happy to fill her up with sugar.

Later she got to Skype with her cousins in Portland and Sadbh was impressed with their stuffed monkey and snake. Unfortunately her oldest cousin, Hayato, was sick so she did not get a chance to Skype with him. Hopefully he will feel better very soon.

It was a very fun evening and Sadbh danced and played until after her bedtime. When it came time for bed she was exhausted and had no problems falling asleep.

Julie is working again tonight so hopefully Sadbh will sleep well and maybe for a little longer than she did last night.

New photos.

Photos from November 22 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 21st 2012

Sadbh had another wonderful night and her heart was in the 80’s for a good portion of the night.

She was in such a deep sleep and did not wake until 7am.

Her nurse called in sick today so Sadbh had Nana and Granddad all to herself.

After a big breakfast it was time to head downstairs to the basement to play with her toys.  Later on, since the sun was finally out, she got to head out for a walk through the neighborhood. She was in her element and could not stop smiling.

Since she slept in so late, she was not ready for her nap until mid afternoon. Katie came home from work to help Granddad with trach care and everything went well. She slept for an hour and forty minutes, however she was very upset when she woke up.

Katie worked her magic and soon Sadbh was in a very happy mood.

Katie’s friend Carey stopped by for a visit and Sadbh showed her how good she was at wearing her trach cap for 16 minutes! We were all impressed and she did not need the bubbles after a few minutes. She was running around the house yapping like crazy and had no problems with the cap. Eventually she pulled it off so we put her Passy Muir Valve back on and she was off again having fun around the house.

America’s best holiday, Thanksgiving, is tomorrow so we were all busy preparing food in the kitchen. Nana was happy playing with Sadbh and Sadbh was thrilled.

She cannot stop talking about and asking for Nana, it’s great how close they are.

Sadbh’s new nurse is working her first night shift tonight and hopefully everything will go well. Katie is quite stressed out but after working with Julie on Monday I’m confident that she will do well.

New photos.

Photos from November 21 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 20th 2012

Sadbh had a very good night sleep and woke up just after Larissa left.

She was more interested in playing than having breakfast and was very happy playing with Katie and Granddad.

Kara worked for a few hours today to help out with trach care.

Shortly after she started her shift they all prepared to head out for a quick walk, however the weather turned nasty so they had to stay home.

Ali-Baba popped by for a visit and got to play with Sadbh for a while until she was ready for trach care.

Trach care went well and Sadbh slept for two hours.

She wasn’t in a great mood when she woke up and had no desire to wear her Passy Muir Valve.

Her mood did improve as the day went on and by the time I arrived home she was much happier.

We were able to persuade her to wear her PMV valve and instantly she was chatting and singing like crazy.

As soon as Katie arrived home Sadbh insisted in putting on her cap so she could play with the bubbles. She did great for almost 6 minutes but she started to struggle and you could clearly hear her stridor.

She showed signs of being tired much earlier than usual and she did not put up a fight when it came time to go to bed.

New photos.

Photos from November 20 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 19th 2012

Sadbh slept like a log and did not budge until she work up just after Larissa left at 6am. Katie watched her on the baby monitor as Sadbh just laid there for almost fifteen minutes. Eventually she started shouting “mamma” and as soon as Katie popped her head in the door Sadbh greeted her with a huge smile.

I had the day off from work so as soon as Sadbh was out of her cot it was time for her breakfast. She had her usual big appetite and got to watch a classic episode of Sesame Street as she ate.

Sadbh’s new nurse Julie started today to shadow my father. She will start working nights this Wednesday and should hopefully work through the weekends.

Sadbh took an instant shine to Julie and she gave her a tour of the house and all her toys.

It was very wet and stormy so Sadbh was housebound all day. She did not mind and ended up having a great time.

Bath time was fun and she was exhausted by the time she was done. She fell asleep in my arms along with one of her books and her favorite stuffed cat.

Julie observed as my father and I managed trach care. Everything went well and one of the sores on her neck looked a lot better than the last couple of days.

She slept for over two hours and woke up in a fantastic mood and ready for the fun to start yet again.

The weather did not lighten up so Sadbh and her posse all headed down to the basement to play with her toys after lunch.

For the past couple of days Sadbh has not wanted to wear her cap or Passy Muir Valve so this afternoon we had to work hard to get her to wear the PMV. After a lot of distractions it worked out and she ended up wearing it for the rest of the evening. Shortly after Katie arrived home from work Sadbh asked for bubbles, so Katie asked if she wanted to wear her cap and Sadbh answered yes.

Sadbh did great and tolerated the cap for 17 minutes straight. It was very impressive considering that she hasn’t worn it in a few days.

New photos.

Photos from November 19 2011.

All the best,

Wayne, Katie and Sadbh.