Sadbh’s update – day 240

Sadbh had another good night. She was a little bit restless, however she slept through the night without any issues and woke up at 6am for breakfast.

With half an hour, she was back to sleep for another couple of hours.

Katie’s mom, Ali-Baba came over late in the morning to play with Sadbh and around an hour later, she helped my father manage trach care.

Half way through trach care, Sadbh woke up, and after crying for a few moments, she settled down and allowed my father to finish up trach care.

Ali-Baba and my father hung out after Sadbh finally fell asleep.

Later on, my father brought Sadbh, and the nurse for a walk through the neighborhood.

Overall, it was a fun and exciting day for Sadbh and fingers crossed, she will have another great night tonight.

New photos.

Photos from October 7,

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 239

Sadbh had a great nights sleep and slept right through until almost 6am.

Our night nurse said that she had a very comfortable night and only needed to be suctioned a couple of times.

We have been working on teaching Sadbh baby sign, and according to our nurse, Sadbh gave her the “I’m done” sign when she was being suctioned in the morning.

As I headed out to work, I gave Sadbh a kiss good bye and for the first time, she actually pursed her lips and made the kissing sound.

It was so cute and it made my whole day.

Trach care was much later today since I arrived home about an hour later than usual.

Sadbh was quite happy when I got home, and shortly afterwards we gave her a bath and started trach care.

Since she was so tired, we were able to take care of business without any issues.

Sadbh slept for almost an hour and once she woke up, it was dinnertime and then tummy time.

She showed us how good she is at rolling and in crawling backwards.

Around bedtime, we tried out her Passy Muir Valve to see how she would hold up and immediately it was obvious that it wouldn’t work.

We then tried the Passy Muir Valve with the 2 millimeter hole and this was an improvement.

The interesting thing about this PMV with the hole is that, since the hole is so big, it doesn’t seem to provide any developmental benefit.

I think we will need to get another PMV with a smaller hole from our respiratory therapist to help with this development.

New photos.

Photos from October 6.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 238

Just around 2am, Katie was called down by the night nurse to feed Sadbh.

An hour later, Sadbh was all bundled up and back in a deep slumber.

At 6am, I took over from the nurse and thankfully Sadbh was still in a nice deep sleep.

40 minutes or so passed before she started to stir, and when she woke up, I found her peeking over at me with a big smile.

I disconnected all her equipment and brought her up to Katie for her breakfast.

Within 20 minutes, she was bundled back up and fast asleep in her cot.

Over the weekend, our friend Suzie lent us a jump-up seat that hangs from the doorframe, and today Sadbh got to test it out. She was in her element and couldn’t stay away from it.

At times it looked like she was practicing dancing the river dance.

Trach care was very quick today since she was exhausted and she allowed us to blast through it in less than thirty minutes.

After she woke up from her nap, my father took her out for a nice long walk up to Madrona and to a great viewpoint overlooking Lake Washington and Mt. Rainier.

Shortly after she got home, it was time for another nap, so Granddad bundled her up and put her to bed.

She didn’t nap for long and when she woke up, I was confronted by Princess Angry Bird.

Actually, it was heart breaking, no matter what I did to console Sadbh, she just cried and cried. She was so upset that all you could hear is her deep breaths through her trach, and occasionally leaking through her mouth.

Eventually after she was fed, she calmed down and was ready to play yet again.

It’s hard to see her so upset, however we are so lucky that this is rare as she is typically a very happy baby.

New photos.

Photos from October 5.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 237

Sunday was another great day for Sadbh.

Katie had to tend to Sadbh at 1am and again at 2am since she was very restless.

At 3am, Sadbh was ready for a feed, and since she was so restless, Katie brought her to bed to spend the rest of the night with us.

Later in the morning, when she was ready for her first real nap of the day, Katie and I started the trach care ritual and since Sadbh was so tired, we were able to get it done without any difficulties.

After Sadbh woke up from her nap, we Skyped with our friend Nini in Munich and discussed plans for her upcoming trip to Seattle. Katie was Nini’s au pair just after Nini was born, and we are honored that Nini will be spending 6 months next year to help us take care of Sadbh.

Shortly after we chatted with Nini, we headed out for a nice walk through the neighborhood and along the way we bumped into our friends Emmanuelle, Claudio and their two daughters Luna and Cora.

On the way home, we picked up a Christmas tree for the house.

Sadbh was so excited to see that we now had a tree in the house. And after we placed the lights and ornaments on it, she could hardly contain herself. She had a humongous smile on her face and I think she was trying to figure how to get the entire tree into her mouth.

New photos.

Photos from October 4.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 236

Sadbh had a good sleep and despite having to be tucked in a couple of times throughout the night, she didn’t wake up until 5am Saturday morning.

Once she was fed and had her diaper changed, she was back to sleep for another few hours.

After Sadbh’s morning nap, Katie headed off to a yoga class and I got to spend the morning with my little girl.

After feeding Sadbh some cereal, we got to play for a couple of hours until she was ready for her next nap.

We had a busy afternoon planed, so we figured it would be a perfect time to manage trach care.

Sadbh slept through the first half of trach care and before we got her trach ties back on, her eyes shot open and she was lying there just looking up at us.

Fortunately she did not get fussy and allowed my father to finish off what he had started.

I had hoped that she would go back to sleep since she only got about 20 minutes sleep all morning, but she wasn’t having any of it so I was time for food and more playtime.

In the last week or so, when she’s sitting up on the wood floor, she has started to scoot herself around, especially if she is chasing her toys.

Sadbh has these egg shaped rattlers that she received from Marie and Roy in Cork, and today she spent the late morning scooting around the floor chasing one of them. Since they are egg shaped, every time she grabs a hold of one of them, it slips out of her hand and rolls away across the floor.

At one point, I noticed that she had scooted herself up to the couch and with her little legs under the couch, she had gotten herself stuck in a position where she couldn’t figure out how to back away.

It was very funny to watch, especially when she started to eat the couch.

Sadbh got to Skype with my mom back in Cork and was excited to see her grandmother.

Later in the evening, our friends Keith and Charlene invited us out on their boat for a cruise around Lake Washington as part of the Seattle Christmas Ship Festival.

What a treat this was, so we dressed Sadbh up in a lovely red holiday dress that my mom had sent over and joined our friends for a trip out on the lake.

It was a beautiful day, and despite being very cold, the lake was very calm.

Keith and Charlene put on quite the spread and spoiled us with their hospitality.

We were hoping for Sadbh to meet one of their friends, Michelle since she is a regular reader of the blog, however she was unable to make it, maybe the next time.

Sadbh was in her element throughout the evening and got to spend a lot of time playing with Cormac and Clodagh.

We were very impressed with how long Sadbh went before she needed to sleep, since she had not slept since close to 11am until 8:30pm.

When we got home, Sadbh had a quick feed and was quickly bundled up and put to bed.

A perfect ending to a perfect day.

New photos.

Photos from October 3.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 235

Sadbh had a great nights sleep and slept until 5:30am Friday morning. Since she was upstairs with us, it was a quick pit stop breakfast, and before she knew it, her diaper was clean and she was back asleep in no time.

Friday was a very busy day for Sadbh. First stop was a visit to her pediatrician’s office for her second flu shot.

The French nurse that takes care of Sadbh is extremely quick and very tender when it comes to giving shots.

She had administered the shot and had the band-aid on before Sadbh knew what happened.

Sadbh cried only for a moment before being distracted by mummy and Granddad.

Katie showed the nurse the video of Sadbh’s voice and she was moved with emotion.

As soon as everyone got home, it was time for trach care.

Since Sadbh had not slept since the morning, she fell into a deep sleep, making it easy to manage trach care.

Early in the afternoon, Sadbh had an appointment with her Homeopathic Physician, Krista.

Our reason for trying out homeopathy is that we are giving Sadbh the opportunity for her body to heal itself and by looking at her vocal cords from a holistic point of view.

Katie showed Krista the video of Sadbh’s last bronchoscope and also of the Sadbh’s cry during our last trach change, and Krista was encouraged by the new development.

Krista prescribed a new remedy of Calcarea (Oyster Shell) which helps with paralysis of the esophagus. Even though this is not specifically a remedy for vocal cord paralysis, it’s good to try this out regardless.

This particular remedy usually suits people that are social by nature, so this is perfect for Sadbh.

Krista and Katie also discussed some of the options that we were considering since our last visit to Children’s Hospital.

Botox that us used for cosmetic reasons, helps stretch out wrinkled skin to it’s nice and taught. Recent studies suggest that prolonged use of Botox can cause extra elasticity resulting in permanent damage.

With this as a potential risk, this helps support our decision not to use Botox on Sadbh’s vocal cords since this could potentially cause issues later in life.

After her homeopathic appointment, it was time to head over to visit Peggy and Kirk

Later in the evening while preparing dinner, Sadbh had great time scooting herself around the floor and trying to the leg from her high chair.

We were prepared for a rough day due to the side affects of the flu shot, however Sadbh had a great day and despite having a higher than usual heart rate, and slightly lower blood oxygen, she did fantastic.

New photos.

Photos from October 2.

All the best and have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 234

Sadbh slept soundly until 5:45am and did not require any suctioning whatsoever.

Since the nurse’s shift was over at 6am, I figured that it would be easier to bring Sadbh up to Katie for her morning breakfast. As soon as we set foot into the bedroom, Sadbh’s excitement was overwhelming.

As soon as Sadbh was done feeding, both ladies fell into a deep slumber, unfortunately this resulted in Katie being slightly late for work. That said, I’m sure it was worthwhile.

Sadbh had another great day with Granddad and they got to go for a nice long walk through the neighborhood.

Unfortunately for my father, the nurse apparently walked the stroller through dog poop, so this required a big clean up once everyone got home. Good times.

As soon as I walked in the door, I was greeted by a happy, smiling little girl, and nothing beats coming home to that smile.

I was able to spend another hour or so, playing with Sadbh before she was finally ready for a nap and trach care.

Afterwards, we all got to play some more and during dinner, Sadbh got to sit in her Bumbo seat on our dining table.

We moved Sadbh and all her gear upstairs to our room as we wont have nurses until Sunday night.

I love sleeping in the same room as Sadbh, and I’m sure she feels the same way.

New photos.

Photos from October 1.

All the best,

Wayne, Katie and Sadbh.