Sadbh’s update – January 13, 2015

Sadbh was up and ready for action at half past six this morning. I met her as she was about to head up the stairs and was able to persuade her to have breakfast first before going up to wake Mommy and Cillian up.

She was in a wonderful mood and was actually excited to be going to see Dr. Inglis today.

After breakfast she put on a performance for Mommy and sang a couple of songs that she made up. It was great to hear her voice so loud and Katie recorded it to show Dr. Inglis.

The doctor visit went well and Dr. Inglis agreed that there was slight improvement since the last visit. He does not think there is significant improvements and certainly not enough to decannulate any time soon. He went over a few options and recommended that we schedule a sleep study so they can record her sats while she sleeps with her trach capped for the night.

This will get us closer to choosing our next steps and we hope to get this scheduled within the next few months.

The other options would potentially further compromise her voice and this is not a direction we wish to take at this time.

Before leaving, Dr. Inglis performed a flexscope on Sadbh and even though she tried her hardest to allow him, it proved to be too painful and she did her best to fight him off. It was hard to watch her suffer and Dr. Inglis did his best to be as gentle as possible. He was not able to see her vocal cords but he was satisfied with what he saw and this reinforced his recommendation to go with the sleep study. 

During the visit Sadbh told Dr. Inglis that last night Granddad pretended to be Dr. Inglis while practicing to perform a flexscope on her.

We also discussed procedures to “rewire” the nerves that serve her vocal cords, however this process is not common on patients as young as Sadbh and they are still in experimental phases.

When we arrived home Sadbh, Cillian, Nana and Granddad went out for a walk up Nora’s Woods and onto the park in Madrona. It was a beautiful day and Sadbh got to play in the park for a while.

Sadbh’s gift arrived when she was out so she was in for a big surprise when she got home. It was a truck and horse trailer for her toy horses and she could not put it down for the rest of the evening.

By dinner Sadbh was starting to act out again. She’s gotten into the habit of hitting when she does not get her way and after a nice long chat with Mommy she came out and apologized to Granddad and myself. The early mornings and outbursts are traits of adjusting to having a new addition in the house.

For the rest of the evening Sadbh was in a much better mood and when it came time for bed she read a book to her new favorite doll and fell asleep very quickly.

New photos.

Photos from January 13 2012.

Photos from January 13 2013.

Photos from January 13 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 12, 2015

Cillian was just falling back to sleep around half past six in the morning when Sadbh decided it was time for her to wake up and join us upstairs. Both Katie and I had been awake for over two hours by this stage and we pleaded with Sadbh to go to sleep until we all got some much needed rest.

I went down to sign the nurse out and after she headed off I went back up to join the family for a snooze.

Sadbh did good and managed to stay quiet for another hour or so.

Eventually it was time to get up and start the day.

After breakfast Sadbh and Mommy spent the morning reading books and hanging out together.

Later in the morning Sadbh got to help give Cillian a bath and she enjoyed it a lot more than Cillian did.

Trach care went well today and soon afterwards Sadbh was curled up in our bed sleeping her head off. She was completely wiped out.

We let her sleep for an hour before waking her up and when she woke up she was the crankiest that I have ever seen her. She got so upset that we had to remove her trach cap to allow her to breathe properly and after a while we had to suction her trach to clear her secretions.

Eventually we were able to calm her down and once she was happy we headed off to Alki Beach for a walk in the sunshine.

Sadbh had a great time splashing in the puddles and writing in the sand. She really wanted to build sand castles but unfortunately it was too cold for that.

By bedtime she was quite tired but it still took a while to get her to sleep.

We have Sadbh’s follow up appointment with Dr. Inglis tomorrow morning and there is a strong chance that he will place a flexscope up her nose to view her vocal cords.

Sadbh hates this procedure so in preparation of tomorrows visit she picked out a gift last week and will receive it after the appointment.

Tonight she was talking to Katie about her appointment and mentioned that Dr. Inglis might not place the camera up her nose. Katie then asked her if that would be ok in which Sadbh responded that she wanted him to do the flexscope and that we should make sure to ask him to do it.  Presumably, she wants this so that she is sure to get her new toy.

New photos.

Photos from January 12 2012.

Photos from January 12 2013.

Photos from January 12 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 11, 2015

Sadbh woke up very early yet again and spent her time with Harjinder watching movies on Harjinder’s phone. By the time she came upstairs to us she was already quite wired.

She had a good morning and got to make French toast with Mommy and later she got to Skype with her cousins, James and Lilly back in Cork.

After trach care we headed over to Ballard to visit the farmers market.

Sadbh enjoyed being out and about and had fun spending time with Mommy as they checked out all the market stalls.

By the time Sadbh got home she was showing signs of extreme tiredness and she was also starting to act very cranky.

It was a bit of a difficult evening for everyone, especially Sadbh as she was way too tired to understand what was going on and why her behavior was not acceptable.

We got her to bed as quickly as possible and thankfully it did not take long to get her off to sleep.

New photos.

Photos from January 11 2012.

Photos from January 11 2013.

Photos from January 11 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 10, 2015

Sadbh was up early again and she got to hang out with Harjinder for a while. Sadbh wanted Harjinder to play with her but since it was so early Harjinder tried to get Sadbh back to sleep.

It was a very wet day so when Sadbh came up stairs we had a snuggle and the four of us slept in for a while longer.

We are really enjoying our morning snuggles and its really sweet to see Sadbh bonding with Cillian first thing every day.

It was a very lazy day and Sadbh spent it taking turns playing with each of us.

As usual, she kept each and every one of us going and it was impossible to keep up with her energy level. She did not even take a nap.

Trach care went well with Katie and Granddad managing it. Sadbh was happy watching Netflix on Katie’s phone and as soon as they finished it was time to play again.

She dressed up as a fairy afterwards and had me flying her around the house. Once she was satisfied with flying around the house it was time for me to be her horse with her riding on my back. It was never ending, however, she had a great time.

Granddad and Nana sent Katie and I out for dinner tonight while they looked after Sadbh and Cillian. Cillian slept as usual and Sadbh kept her grandparents busy.

After dinner it was time for dessert and after eating her own Sadbh wanted Granddad’s cupcake. He explained that it was his and not hers and she responded with “in this house, everything is mine”. In the end she got half of Granddad’s cupcake. Cheeky girl.

Last night after the nurse started her shift we realized that the compressor pressure had not been checked. I asked the nurse to see if it was set to 10 and she responded that it was set to zero as per normal. This concerned me so I went in to double check. Apparently the nurse was using the wrong pressure gauge to check the compressor. 

It's very frustrating to have to retrain how to operate Sadbh's equipment over and over.

New photos.

Photos from January 10 2012.

Photos from January 10 2013.

Photos from January 10 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 9, 2015

Sadbh woke up early again this morning and came up for a snuggle as soon as she could.

We all had a nice lie in and when it came time to head down for breakfast Sadbh was eager to join me.

We had Cillian’s two week check up today and Sadbh really wanted to come along. The Pediatrician’s office is not that big and with all four of us, along with Sadbh’s equipment it was a snug fit.

The appointment went great and Sadbh was happy to see her doctor too.

Dr. Hathaway was surprised to see how big Sadbh had gotten and she was very impressed with how grown up she appeared.

We had a couple more appointments and once home it was time for Sadbh to have a bath and trach care. Katie and I managed trach care, and for a while I had to hold Cillian while cleaning Sadbh’s neck, as he was very upset. Everything worked out well and soon Sadbh and Cillian were both happy.

In the early evening Sadbh went out for a walk with Cillian, Nana and Granddad. She had fun and came running up the street all happy when she saw me working in the front garden.

The rest of the evening was spent playing with her toys. Bedtime was very easy as she was fast asleep in less than five minutes.

New photos.

Photos from January 9 2012.

Photos from January 9 2013.

Photos from January 9 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 8, 2015

Sadbh was up bright and early again this morning and got to spend some time hanging out with Jirapa before coming up to wake the rest of us up.

Cillian had both Katie and me up again last night so as soon as Sadbh came up I took her back down stairs so Katie and Cillian could get some extra sleep.

After breakfast Sadbh, Granddad and I headed out to take care of a few errands. One of the stops was to the hardware store to pick up some 2 x 4’s. Sadbh had fun riding on the trolley and she did not want to get off when we arrived back at the car.

We have to make another trip to the hardware store tomorrow and she is all excited.

Not long after we arrived home Granddad and I got trach care out of the way. Sadbh was very cooperative and once done she was free to get back to playing and having fun.

Cillian was very fussy today so Nana and Granddad took him for a walk through the neighborhood. Sadbh had no interest in tagging along and decided to hang out with Mommy instead.

She was in a very playful mood and spent the evening playing tricks and having fun with everyone. Bedtime was especially funny as she pretended that I was her and she was my mommy. It was very funny to say the least and eventually I had to run out of her room if there was any chance of her going to sleep.

New photos.

Photos from January 8 2012.

Photos from January 8 2013.

Photos from January 8 2014.

All the best,

Wayne, Katie, Sadbh and Cillian.

Sadbh’s update – January 7, 2015

Sadbh’s update – January 7, 2015

Sadbh woke up very early but waited with the nurse until Granddad took over.

She had a great time with Jirapa and was telling her all about her brother and her toy horses.

Later she told Nana that she did not dream about Taco last night but she did dream of horses and according to Katie she also had a dream about a whale pig….

She had a fantastic day playing with each of us and when the fog cleared she headed out for a walk with Nana and Granddad. They headed to Nora’s woods first and then on to the park. After Granddad cleaned down the various playground features Sadbh got to play and have fun. She really enjoyed herself and could not wait to get home to let us know all about it.

Once home it was time for a bath and trach care. Everything went well and afterwards she helped take down all the Christmas decorations and then got ready for bed.

She was out like a light early tonight and it was a good thing as she was very tired from her early start and long walk.

She fell asleep with her trach cap on but I took it off after twenty minutes or so since she was working hard to breathe.

New photos.

Photos from January 7 2011.

Photos from January 7 2012.

Photos from January 7 2013.

All the best,

Wayne, Katie, Sadbh and Cillian.