Sadbh’s update – November 11th 2012

Nana and Granddad baby-sat Sadbh last night so Katie and I could join some friends for dinner. She was very excited and did not go to bed until after 10am, a couple of hours after her usual bedtime.

She had a fantastic night sleep and did not wake until 6am. As soon as she joined us in bed she fell back to sleep and did not wake until 9:30.

Just as we were getting up I received a call from my aunt Joan in Ireland and when I put her on the phone to Sadbh, Sadbh got very shy.

Since she had such a long sleep and a late sleep in, we decided to head out to Ballard to meet with Ali-Baba and Kirk at the farmers market.

It was a very cold damp day but Sadbh was bundled up nice and warm.

Sadbh was fascinated with all the dogs that were at the market and she kept following them around.

My father and Kirk found a trader that was selling fresh miniature doughnuts and Sadbh could not get enough of them. At first she wasn’t sure and after savoring the taste for a moment she snatched the other doughnut out of Katie’s hand and wolfed it down.

I think she had at least 5 miniature doughnuts, thanks in part to Ali-Baba.

It started to rain and it seemed to be getting cooler, so we headed home.

Sadbh was starting to get sleepy during the drive home so Katie and Nana kept distracting her to keep her awake.

She was obviously over tired when we arrived home and it took almost an hour to get her to sleep after her bath.

Trach care went well, however, Sadbh woke up very angry just as I was securing her trach. We managed to finish up and get her ties secured, but Sadbh was awake and ready to play.

Later in the evening Sadbh’s friends Clodagh and Cormac came by for a visit. Sadbh was thrilled and all three kids had a great time playing.

When it came time for bed, Sadbh was a very cranky little girl. She was extremely upset and it took us quite a while to get her calmed down and off to sleep.

Hopefully she will have a good sleep tonight since she only got 15 minutes sleep all day.

New photos.

Photos from November 11 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 10th 2012

Sadbh woke up just as we got to bed and was not happy until she was in bed with us. It was another rough night and Sadbh had us awake for most of it.

She was fully awake by 5 but we stayed in bed for a couple of hours while she did her best to get us up. By 7 she was saying “all done” so we knew it was time to get her up and ready for the day.

I brought her down for breakfast so Katie could get some sleep however Sadbh was not happy so it took a while to get her settled and eating breakfast.

Granddad was up early and joined in on the fun of keeping Sadbh happy. Eventually all the hard work paid off and Sadbh ended up having a lot of fun.

Sadbh has noticed that the windows in the living room have been full of condensation as a result of the colder weather. As soon as the blinds are drawn each morning this week she heads into the kitchen, grabs a couple of towels and gets busy cleaning the windows. She doesn’t do a great job, but its good enough for her to be able to look out the window.

She got tired around 11 and just after her bath she was ready for trach care. Unfortunately her skin is starting to get raw under the trach ties so Katie dressed it and finished off trach care.

Sadbh only slept for an hour and woke up groggy and cranky.

After lunch I capped her trach and she tolerated it for five minutes. She did great but you could hear her stridor as she breathed so we finished up and replaced the cap with her nose.

As soon as we were done I bundled her up nice and snug and we both headed up to Capitol Hill for a walk. She looked as if she was going to doze off but as soon as we set off she perked up and got excited since she was outside.

She could not stop smiling and waving at all the cars and passersby’s.

It’s amazing the amount of smiles she received from people that pass by. The change in people’s expressions when they see Sadbh is priceless. I know this is true for most kids, but Sadbh definitely lights up the place.

I was hoping that she would have a nap on the way home but she was still having too much fun. As soon as we arrived back at the house it was off down to the basement to play with all her toys down there.

We had a great evening and as soon as Granddad and Nana arrived home they too got to join in on the fun.

New photos.

Photos from November 10 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 9th 2012

Sadbh was fast asleep when we went to bed, however just around 12:30 she was awake and was insisting that she joined us in bed.

The rest of the night was a rough one for both Katie and myself with a very active little baby tossing and turning and a lot of kicking.

By 5:30 she was wide-awake and in a great mood.

Katie tried hard to get her back to sleep, but Sadbh wasn’t having any of it. Katie gave up shortly after 7 so both ladies headed downstairs for breakfast.

Sadbh had a very hard time when it came time for Katie to leave for work and she got extremely upset.  Katie was also very upset and it was difficult to leave the house.

It was another cold dry day so not long after Caity started her shift, they all headed out for a walk. By now, Sadbh was in a great mood and was delighted to be out and about.

After they arrived home it was time for trach care and a two and a half hour nap. Sadbh slept great and woke up in a great mood.

She had a fun afternoon and evening andshe even got to Skype with her cousins in New Zealand. However she started to get very cranky when it came time for dinner. She was more interested in throwing her food around rather than eating it, so Nana got up to get her a binky while I cleared her plate.

As soon as Nana gave Sadbh the binky, she immediately asked for more. Before she knew it she had 8 on her tray and then she blew us all away.

She started to count them and managed to count all the way up to 6. We couldn’t believe what we were hearing, but she did it a couple more times so there was not doubt that she was counting.  I was fortunate enough to be able to grab the camera to record it.

When it came time for bed she was exhausted and did not put up much of a fight.

New photos.

Photos from November 9 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 8th 2012

Sadbh had yet another great night sleep and half way through she sat up, rubbed her tummy to say please and then dropped back down to sleep for the rest of the night.

She did not wake until almost 7am and woke up in a great mood and very hungry.

Katie had to leave for work early so Sadbh and Granddad got busy playing and horsing around.

Caity worked today so she was able to join in on the fun as soon as she arrived.

It was a brisk cool morning so Sadbh was dressed up nice and snug and off they went out into the back garden to check out the vegetable patch. Sadbh picked a whole bunch of tomatoes and even tasted a few for good measure. I’m sure they are all quite bitter by now, but Sadbh didn’t seem to mind.

She had so much fun and really enjoyed being out in the cool fresh air.

Ali-Baba arrived shortly after they all headed indoors and Sadbh was thrilled to see her. They got to play and dance and when it came time for trach care, Ali-Baba gave Sadbh a nice bath.

Trach care went really well but Sadbh only slept for an hour and twenty minutes.

After lunch Sadbh and her gang all headed out for a walk. She was in a great mood and had no desire to head back indoors.

Sadbh arrived home from her walk just as I arrived home from work and she gave me the biggest smile from across the street.

It was starting to get colder so we headed into the house so she could get warmed up.

It did not take long since she was still in a very energetic mood and with both of us chasing each other around the place.

Sadbh was wrecked when it came time for bed and was very cranky.

Larissa is not working tonight so I hope Sadbh sleeps right through the night, however I’m sure she will be joining us in bed not long after midnight.

New photos.

Photos from November 8 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 7th 2012

Sadbh slept great last night and woke up at 6:30 and was immediately ready for breakfast.

Just before she sat down to eat, I received a call at work and got to listen to a chatty little girl on the other end of the phone.

She was in a very playful mood and the fun continued when Caity arrived.

Unfortunately, the floodgates opened when it came time for Katie to leave for work, and Granddad and Caity had to work hard to calm her down.

It was a lovely day so Sadbh headed out for a walk up to Capitol Hill with her support team. She loved being out and got to really enjoy the fresh air and sunshine.

Sadbh made it back to the house in time for trach care and she slept for three and a half hours afterwards.

After lunch it was time to try out capping her trach again and overall she tolerated 9 minute before they decided to give her a break.

She had a wonderful evening and was full of fun and energy.

New photos.

Photos from November 7 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 6th 2012

Sadbh slept great and entertained Larissa by sleep talking during the night. She said “dada” a couple of times and when Larissa told me about this, it brought tears to my eyes.

She woke up moments after Larissa’s shift finished and was ready for her breakfast.

She had a fun morning by 11am she was ready for her bath and trach care. It went really well and she slept for an hour and a half.

When she woke up she was still very sleepy and only wanted to cuddle for a while.

After lunch Caity and Granddad practiced capping Sadbh’s trach. She did well for a total of 6 minutes but she eventually started to struggle so she pulled it off.

Katie had e-mailed Dr. Inglis last night to give him an update on our testing of the trach cap. He was encouraged by how she was tolerating the sensation of airflow through her airway, nose and mouth and advised us to keep practicing.

We were fortunate with our timing as he was just heading to Singapore to lead an operation to insert a rib graft on an older child with bilateral vocal cord paralysis.

Even though this would not be a solution we would like to use for Sadbh, it reassures us that Sadbh’s doctor is one of the best.

New photos.

Photos from November 6 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 5th 2012

With the change in the time due to day light savings, we decided that Sadbh should start going bed thirty minutes sooner than usual.

It worked out well and she slept great throughout the whole night.

Larissa worked last night and helped keep Sadbh nice and comfortable. At one point during the night Sadbh’s heart rate went up to a level where Sadbh would usually be waking up. Moments later it dropped back down to a deep sleep and all of a sudden there was a strong smell in the air. At that stage it was very obvious that Sadbh had to use some energy to pass wind.

Sadbh was wide awake by 6:15 and as Katie watched her on the monitor, Sadbh laid there in her cot calling out “Hi” until Katie went in to take her out of bed.

She had a nice big breakfast and got to hang out with Katie and Granddad.

Caity was working today and Sadbh was happy when she arrived. I took the day off of work so Sadbh had plenty of people to play with.

We tested capping her trach a couple of times throughout the day and each time she managed well for a few minutes. We noticed that her chest would start to retract after about 3 or so minutes so we removed the cap and replaced it with her Passy Muir Valve.

The weather was very nice today so Sadbh, Nana, Granddad and Caity headed out for a short walk. Sadbh had a lot of fun and made it back in time for her nap. Trach care went well and Sadbh slept for two and a half hours.

I spent the afternoon playing with Sadbh and we both had a great time.

Since the weather was still very nice, Sadbh and her followers headed up to Capitol Hill for a walk.

Larissa is working again tonight so hopefully Sadbh won’t stink up the room again.

New photos.

Photos from November 5 2011.

All the best,

Wayne, Katie and Sadbh.