Sadbh’s update – September 14th, 2012

Sadbh did not have a nurse last night and since we are getting out bathroom remodeled upstairs we felt it would be better if Sadbh slept in her room due to the dust etc.

To make sure that she slept well I made a bed in the armchair next to her cot and slept along side her all night. It was far from comfortable, but I was able to keep Sadbh asleep throughout the night.

Sadbh woke up around 6:30am and was hungry for breakfast.

We did not have a nurse working so Nini took care of Sadbh solo, and it was a busy day. We had two different contractors in the house and a visit from the nursing agency to recertify Sadbh for our insurance company.

It is amazing how well Nini can juggle it all and most importantly how she takes such great care of our little girl.

Once things settled down a little bit, Nini and Sadbh had a blast singing and dancing. Eventually, Sadbh started to get tired but it was perfect timing since Ali-Baba had arrived to help with trach care.

Sadbh slept for two hours and shortly after she woke up Katie arrived home from work.

Once Sadbh’s belly was full from lunch, it was time to head out for a walk and to the farmers market to see what was going on.

Sadbh got to sample all sorts of tasty fresh fruit and came home with raspberry stains all over her face. She looked good enough to eat.

Andrew popped by for a short while and Sadbh gave him a huge smile.

Katie’s mum and step-dad had invited us over for dinner to celebrate both Katie and my birthdays. As soon as we walked in the door, Sadbh’s face lit up when she seen Ali-Baba.

We had a fantastic evening but when it came to leave it got very emotional. Nini leaves to go back to Germany on Sunday morning and as Ali-Baba and Kirk said good by, there were a lot of tears.

Sadbh fell fast asleep within a few minutes of being placed in her car seat. Once we arrived home it was time to move all her equipment upstairs into our room and thankfully she did not wake up.

New photos.

Photos from September 14 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 13th, 2012

Sadbh was in a deep sleep when Larissa arrived last night. About twenty minutes into her shift, Sadbh woke up, gave her a look, could not see Katie and just flopped back to sleep.

She slept great through the rest of the night and did not wake until 7.

She was in a great mood and had a huge appetite for breakfast.

Kara was working today and Sadbh was delighted. It was the first time in a while that Kara worked and she was very impressed with the developmental improvements with Sadbh.

Sadbh wore her Passy Muir Valve throughout the day and was making all sorts of sweet sounds. There was singing and dancing and she caused all sorts of laughter when she started to wear her salad bowl as a hat.

After many hours of playing, Sadbh started to get tired so it was time for a bath and trach care.

When Nini was reading a bedtime book to Sadbh, all of a sudden Sadbh turned into her and gave a big hug.  It was a very special moment for Nini.

Once Sadbh was asleep, Nini and Kara started trach care. Unfortunately Sadbh woke up and got very fussy. She got extremely upset and started to move all over the place. Nini had to work fast to finish off cleaning around her neck and to get the new trach ties secured. Sadbh even tried to push Kara’s hand away from holding her trach, but both Nini and Kara were in control and were able to finish the job without incident.

It was obviously very exhausting and stressful for them both, but we are grateful for how well they handled the situation.

Sadbh had no intention of going back to sleep so it was time for lunch and then out for a walk.

She slept for almost an hour while out walking around, and was full of beans once she arrived home and woke up.

The fun continued once I arrived home and both Sadbh and I had a ball. She was climbing all over the armchair and could not get enough jumping around.

When Katie arrived home, Sadbh indicated to her that she wanted to wear the PMV. As soon as it was on we all headed out to see the neighbors.

She met a few new faces and was in her element. All the other kids were fascinated with her trach and were encouraging her to speak.

Sadbh was in a very good mood when it came time to go to bed. She was all snug in her pajamas and could not stop singing while brushing her teeth.

New photos.

Photos from September 13 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 12th, 2012

Sadbh woke up within a few minutes of Larissa arriving last night. As soon as she spotted Katie, she had no intention of going back to sleep.

She was making the baby sign for Andrew, Cormac, Clodagh, Dylan and she would not stop.

It took Katie two hours to get Sadbh back to sleep and when she finally dropped off, she hardly moved until she woke up at 6:20.

Moments after Katie cuddled her, Sadbh fell back to sleep for a couple more hours.

Nini was working solo again today so after breakfast she and Sadbh listened to some old children’s music and danced around the living room. Sadbh had a ball.

Ali-Baba came over to help with trach care but Sadbh was having way too much fun. Sadbh was too busy entertaining everyone and it took forever for her to finally get tired enough for trach care.

Even as Nini tried to get Sadbh to sleep, Sadbh would start to play peek-a-boo or some other game.

She finally fell asleep and once she was out both Nini and Ali-Baba were able to manage trach care without any problems.

Sadbh slept for two hours and after lunch she and Nini headed out for a walk.

As usual, Sadbh waved at everyone she met and returned home later with a huge smile on her face.

The rest of the evening was spent playing at a rate of about 100 mph. She had so much energy we decided to take her for a walk around the neighborhood just before bedtime. It seemed to work and as soon as she was cleaned up and in her pajamas, she was already falling asleep.

Fingers crossed that she will sleep soundly tonight.

New photos.

Photos from September 12 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 11th, 2012

Sadbh had a very active night sleep and on two occasions she sat right up and looked directly at Larissa only to flop back down and back to sleep.

She finally woke up at 7am and was in a very happy mood.

She had a big breakfast and after she was done it was time for the fun to begin.

Su Jin was working today so she got to join in on the fun with Sadbh and Nini.

The weather improved a great deal so they all headed out for a walk in the sunshine. Sadbh was delighted and off she went greeting everyone she passed along the way.

When it came time for trach care, Nini and Su Jin were able to manage it very well since Sadbh was very relaxed and in a deep sleep.

She slept for two hours and woke up in a great mood and ready for lunch.

Once she was done eating, they all headed off out for another long walk in the sun and this time Sadbh wore her Passy Muir Valve.

She has being doing fantastic on the PMV lately and can tolerate it for hours on end. Her airway does get a little bit dry, but it does not seem to bother her much.

Sadbh’s hair is growing slowly, however today Su Jin was able to tie up a small ponytail at the top of her head. It was very ambitious, but extremely cute all the same.

New photos.

Photos from September 11 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 10th, 2012

Sadbh slept right through the night, however she was tossing and turning all night.

According to Audrey Sadbh was kicking like crazy most of the night, however, her heart rate was in it’s usual in it’s usual relaxed level.

She awoke at 5:20 and played with Audrey for awhile before Katie came downstairs.  She even watched a little bit of Signing Times with Audrey.  She was back to sleep by 6:30 and slept through until 8:30.

By then she was in an excellent mood and was delighted to see Nini.

Our friend Andrew came by again this morning and Sadbh was very happy to see him.

We did not have a nurse working today so Nini was flying solo for the day. It gave both ladies a great opportunity to catch up and have as much fun playing as possible.

It was a wet and cold morning so Sadbh and Nini stayed indoors but made the most of it by chasing each other around the house.

Since Nini was minding Sadbh alone today, we decided that trach care would be managed when Sadbh went to bed this evening.

When it came time for Sadbh’s nap she was confused when she was placed in bed without having her bath. She kept making the sign for bath.

She slept like a log for over two hours and woke up in a great mood.

The fun and games continued after lunch and later it was time to go for a stroll when the sun came out.

Unfortunately it was short lived since it started to rain, so Nini ran home as quickly as possible so Sadbh would not get wet, much to Sadbh’s enjoyment.

I arrived home just as Sadbh and Nini did and helped get all of Sadbh’s equipment into the house.

Sadbh was still full of energy and could not stop playing with her new toy dog.

When it came time for bed, Sadbh was very tired but she had no intention on going to sleep. I fought hard for almost an hour to get her comfortable and calmed down, and moments after she dozed off she woke up again. Katie took over and after 30 minutes or so she finally fell asleep.

Trach care was very stressful as Sadbh was extremely restless and kept moving and twisting from side to side. Her trach was close to popping out a few times and Katie did a fantastic job keeping it in place.

This is the last thing you want to deal with at the end of a long day.

Unfortunately, we only have a couple of days covered by nurses over the next three weeks since Nadia is on vacation and since Nini is heading back to Germany over the weekend.

New photos.

Photos from September 10 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 9th, 2012

It was a much better night for Sadbh and she slept until 5 when she joined us in bed for another few hours.

After breakfast Sadbh was playing with Katie and I when all of a sudden she heard a sound coming from the kitchen. She turned to see Nini peeking around the corner and she ran so quickly into her arms with a huge smile on her face.

Nini had arrived back from her travels around 2am and it was emotional to see both of them reunite.

Next Sadbh got to Skype with my parents in Cork and as soon as they appeared on the screen she was over the moon.

It was a very busy morning full of excitement and once it came time for her nap, Sadbh fell into a very deep sleep after her bath.

Trach care was quite easy and Sadbh slept on for an hour afterwards.

Ali-Baba and Kirk popped in for a visit and surprised Sadbh with a toy dog named Regal, the beagle.

Sadbh was delighted with herself and could not stop making the sign for dog.

Afterwards we all headed off to meet Cormac and Dylan at the zoo. Sadbh has been a couple of times already, however both times she was too young to appreciate where she was.

The weather had changed and as a result the zoo was not very busy. Sadbh met with her friends at the penguin exhibit and was fascinated with all the penguins swimming around.

It was definitely a much more exciting visit for her this time as she got to see and hear all the animals.

It was a great day and Sadbh really enjoyed herself.

Audrey is working tonight so we hope Sadbh sleeps right through the night without any fuss.

New photos.

Photos from September 9 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 8th, 2012

Sadbh had a very rough night and was up and down all night.

By 7am she was wide-awake and raring to go. She was in a great mood and was adamant that we got up also so we could enjoy the fun.

Somehow she managed to get a hold of all four of her binkies and was rotating each of them. I had no idea where they all came from but it was a funny sight to watch.

After breakfast our friend Andrew stopped by for a few minutes. Sadbh heard his voice before she saw him and she immediately made the baby sign for him.

Katie had an appointment mid morning so Sadbh and I got to spend a few hours together with nothing but fun on the list of things to do.

Later we headed out for a walk and by the time we got to the shops Sadbh fell fast asleep.

Typically we try to manage trach care during her first nap, but since she was so tired and without a second set of hands, trach care had to wait until her next nap.

She slept for almost an hour and woke up with a huge smile on her face.

Once Katie arrived home, the fun and games continued and we headed out into the back garden. As I watered the garden, Sadbh was fascinated with the hose and was thrilled every time I gave her a little splash. She couldn’t get enough and kept coming back for more.

All the fun wore her out so we brought her inside for a bath and she fell fast asleep as soon as she was in her nice warm pajamas.

Trach care went by easy for the most part although it was fairly obvious that Sadbh has a few tender areas around her neck that we have to keep an eye on.

Both Sadbh and I napped for almost an hour and a half afterwards and as soon as we woke up it was time to head out up to Capitol Hill for a stroll.

As usual, Sadbh could not stop flirting with everyone she passed and she received so many complements.

On the way home we stopped off for ice cream and of course Sadbh almost devoured the entire thing.

New photos.

Photos from September 8 2011.

All the best,

Wayne, Katie and Sadbh.