Sadbh’s update – May 11th 2014

Sadbh only tolerated her trach cap for fifteen minutes last night and as soon as it was removed she slept soundly until almost 8.

I took over from Danielle so Katie could get to sleep in and as soon as Sadbh woke up we both got busy getting set up to surprise Mommy for Mother’s Day.

Sadbh was so excited and little did she realize but Katie could hear her writing her card all the way from upstairs. It was so cute and I was lucky to capture it on video.

Mommy received a huge snuggle this morning and we all got to hang out in bed for a while longer than usual.

We got trach care out of the way shortly after breakfast and later in the day Ali-Baba and Kirk came by to hang out.

Since it was such a beautiful day we all got busy gardening and cleaning up about the house. Sadbh and Ali-Baba had so much fun digging in the dirt and searching for worms.            

When it came time for bed Sadbh was completely wiped out and she ended up having a huge melt down. She did not get her way so she lashed out and got very annoyed. Katie was quick to defuse the situation and soon Sadbh was in a much better mood. Unfortunately she had pulled her trach cap off and she would not wear it to bed.

She passed out as soon as her head hit the pillow.

New photos.

Photos from May 11 2011.

Photos from May 11 2012.

Photos from May 11 2013.

Happy Mother’s Day,

Wayne, Katie and Sadbh.

Sadbh’s update – May 10th 2014

Sadbh wore her cap while sleeping until shortly after 11 when Danielle noticed her chest retracting quite a bit with every breath. Her sats were still good but she was working hard to breath and as soon as the cap was removed she rested a lot move comfortably.

She woke up in a great mood this morning and wanted to go up to see Mommy. Funny thing is that as soon as she get’s into our bed she does not want me in there. I have to squeeze my way in and I’m lucky if I don’t fall out of the bed.

Mommy had yoga this morning so Sadbh and I had breakfast together. She had a good appetite and afterwards she got to take a bath along with all her horses and a couple of her favorite dolls.

As soon as Mommy arrived home we took care of trach care and then headed over to West Seattle to see Neil. Sadbh was quite tired by now and fell asleep on the way. She got a nice long nap and woke up in decent mood.

She had a great afternoon and was very playful with uncle Neil.

In the evening Katie’s friend Michelle stopped by and Sadbh got to show her all her stuffed animals in the basement. Sadbh and Michelle first buried Mommy in the animals, next it was Sadbh’s turn and finally it was Michelle’s go. It was so cute and we all had a good laugh.

Sadbh could not wait to get out into the garden to sow some vegetables and show off her new house. I hope she does not expect the vegetables to be there waiting for her in the morning.

Bedtime was a little later than usual and Sadbh was still awake when Danielle arrived. Unfortunately she did not want to wear her trach cap and as soon as Mommy removed it she fell off to sleep very quickly.

Danielle will try to cap her later on when she falls into a deeper sleep.

New photos.

Photos from May 10 2011.

Photos from May 10 2012.

Photos from May 10 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 9th 2014

Sadbh slept from 8:20pm until 1:30am with her trach cap. This is a huge milestone and when Katie and I took over from Helen this morning all four of us were jumping with joy. From when she was capped yesterday morning until it came off at 1:30am she had her trach capped for over 18 hours!

Caity, Sadbh’s nurse supervisor, stopped by today to recertify Sadbh. Sadbh always enjoys Caity’s company and she was very proud of her capping achievement.

Sadbh and I tried numerous times to leave the house today for a walk and on the third attempt we got about four blocks away before Sadbh tripped over my foot and smacked her mouth on the ground. She cut her lip but thankfully did not damage her teeth. I quickly picked her up and since she was so upset I had to remove her trach cap so she could breathe properly.

We high tailed it home to get cleaned up and to make sure that everything was ok.

Once clean it was time for some ice cream. This did the trick and soon Sadbh was in a much better mood.

It started to rain quite heavily so we decided to stay home for the rest of the day instead. We Skyped with Sophia and Sadbh was over the moon to see her. She could not stop chatting and even got to chat with Sophia’s parents too.

The rest of the evening was spent playing and having fun and when it came time for bed she was exhausted. She did not want to fall asleep with her cap on so Katie took it off and tucked her into bed. A few minutes after she fell asleep we slipped it back on and hopefully she will sleep a few hours with it on tonight. So far, so good.

Sadbh has her trach three years today. It’s amazing how a little plastic tube can make such a difference and we are so lucky for it. Hopefully we will not be marking her fourth year with a trach, but if we are, we will still be very grateful for it.

New photos.

Photos from May 9 2011.

Photos from May 9 2012.

Photos from May 9 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 8th 2014

Sadbh hardly moved all night and was in a very good mood this morning when she woke up. She was sad that Kati had left early and wanted to look for her airplane to waive to her.  She hopes to see her again soon.

Unfortunately Sadbh did not eat much for breakfast. We had a much better morning than yesterday and since it was not raining we grabbed her new scooter and headed out for a walk through the neighborhood. Sadbh started off well on her scooter but we were not half a block away before she gave up and walked with it instead.

After a while it started to sprinkle and at the same time Sadbh wanted to go potty. Thankfully we were not too far away from home so I picked Sadbh up, along with her scooter and stroller and headed off for home.

We made it back just in time and Sadbh was very relieved.

She was starting to have a melt down and after twenty minutes or so I was able to convince her that it would be a good time to have something to eat. She devoured her lunch and the rest of the afternoon was spent acting out scenes of her favorite movie Frozen. She plays Princess Anna while I am Prince Hans. Sometimes I’m good and other times I’m evil. It’s all good fun.

When Mommy came home we quickly managed trach care and then headed to the cinema down the street to watch cartoons for an hour or so. Sadbh had a lot of fun and was very tired when we got home.

She quickly went to be and wore her trach cap for a while after falling asleep.  This is the first time that she has fallen asleep at night with her cap on.

New photos.

Photos from May 8 2011.

Photos from May 8 2012.

Photos from May 8 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 7th 2014

Sadbh had a great night and woke up in a very good mood. Unfortunately her good mood did not last long and for the rest of the day it was hit and miss.

After breakfast Sadbh, Kati and I headed up to Capitol Hill for a nice long walk. She really enjoyed being out of the house and she had so much fun showing Kati all her favorite things.

By the time we arrived at Pike and Broadway she was starting to get tired and extremely cranky.

Half way home Sadbh fell asleep in her stroller and slept soundly for over an hour with her trach cap on.

Unfortunately she missed out on her lunch so when she woke up she was not happy at all.

I had set up trach care in the hope that we could get that taken care of but she was not having any of it.

It was the battle of the wills for over an hour and in the end I was able to talk her into allowing us to do trach care.

She had worked up a huge appetite so after trach care she got busy devouring her lunch.

Mommy soon arrived home and after some snuggles Sadbh, Mommy and Kati headed off to Seward Park for a walk. Sadbh was in a much better mood and spent much of the walk looking for ants and other bugs.

Kati leaves early in the morning so when it came time for Sadbh to go to bed she said good-bye. Sadbh would not have any of it and kept asking Kati to stay.

As soon as her head hit the pillow she was out like a light.

Helen was telling us that when she checks Sadbh’s lungs during the night with her stethoscope that Sadbh realizes what’s going on and stops breathing. Too funny.

New photos.

Photos from May 7 2011.

Photos from May 7 2012.

Photos from May 7 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 6th 2014

Sadbh slept great and woke up in a very good mood. We got her nebulizer out of the way before getting out of bed and I was able to clear her airway without any problems.

After breakfast we headed out to play in the garden and in Sadbh’s new house. She was busy making food and drinks for Kati and both girls had a fun time.

Kati received a text from her friend in San Diego who was having a rough day. She asked Sadbh to say, “Everything will be alright” and recorded it on video. This video immediately cheered Kati’s friend up.

Kati helped me with trach care again today and Sadbh was so good.

She wanted to take a nap afterwards however after a few minutes she wanted to get up and have lunch.

Katie arrived home shortly after lunch so we got Sadbh ready and headed off to Children’s Hospital for her appointment with Dr. Inglis.

As we waited to be called a young girl, probably a year or so older than Sadbh, came out of the clinic with her parents and walked past everyone and straight up to Sadbh. She reached out and held Sadbh’s hands very tenderly. She also had a trach and it turns out that she just finished her appointment with Dr. Inglis. Her parents mentioned that they were meeting for her pre-op to have surgery so she could have her trach removed. She was such a cute little girl and we hope everything works out for them.

It was good to see Dr. Inglis and our appointment went well. He did see some improvement in Sadbh’s ability to manage with her trach capped and went over six or so options for us to consider.

Our number one option would be to stay the course and see how she does over the next six months. This is our preference however we are starting to consider surgery due to numerous reasons.

The second option would be for a procedure called cordotomy. This would be where Dr. Inglis would use a laser to cut a very small notch in one of Sadbh’s vocal cords. There would be change in her voice and we would not know how it would be affected until after she heals, however in Dr. Inglis’s experience he expects the change to be minimal, although this would not be guaranteed.

The third option would be a suture lateralization that would consist of passing a suture through the neck in through airway below the vocal cord, up past the vocal cord and back out to be tied off pulling the vocal cord open. The risk with this is that it would loosen over time and not be as effective.

The fourth option is an endoscopic crichoid split with rib graft. They would use a rib graft to pry open the vocal cords. The immediate effect would be loss of voice and higher risk of aspiration within the first few weeks. Eventually the swelling would subside and Sadbh’s voice would return, might not be as strong, and a lower risk of aspiration.

The fifth option would be the reinnervation of her vocal cord nerve to her diaphragm. Dr. Inglis believes that Sadbh’s condition is not severe enough for this procedure.

The sixth option would be for a laryngeal pacemaker. This option is in the early stages of development so it is too early to really understand if this would be a benefit.

We scheduled Sadbh’s next appointment for October and will hope that Sadbh will improve her trach capping while sleeping.

After dinner Sadbh got to watch her favorite movie, Frozen, with Kati. Sadbh was so excited and sang along to most of the songs. Kati fell asleep.

We all got nice big cuddles from Sadbh at bedtime and she was out like a light after a busy day.

New photos.

Photos from May 6 2011.

Photos from May 6 2012.

Photos from May 6 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 5th 2014

Sadbh woke up after a great night sleep and started to disconnect all her equipment. She spotted me sitting next to her as soon as she jumped out of her bed and with that she jumped right back in and hid under the blankets giggling.

She could not wait to wake Kati up and we lucky for Kati she was already awake when Sadbh barged into her room.

After breakfast Sadbh got to eat her second cup cake. She devoured the cup cake and the aftermath was as if it exploded across the dining room. What a mess.

The weather was on and off all day but we got a chance to head out for a walk. Our first port of call was the post office where Sadbh greeted and started up a conversation with everyone that came in. It was so funny and she had everyone in hysterics.

You could tell that she was very happy to have Kati visiting and she kept telling people that “Kati Kind” was here to visit her.

We beat the rain home but Sadbh was very tired. Kati is a doctor so she helped out with trach care. Everything went extremely well and Sadbh fell asleep before we finished.

I popped the trach cap on after a while and she slept for almost an hour with it on. She was quite restless and you could hear strider as she worked harder to fill her lungs but she did great and kept sleeping until I woke her up.

She could not wait to dress up in her princess dress and show it off to Kati. By now Mommy had arrived home and Sadbh was over the moon.

Things only got better when she got to Skype with Nini. She was so excited I thought she was going to explode.

The rest of the night was fun and Sadbh went to bed a very happy little girl. Mommy read some bed stories and we tried to cap her trach as she dropped off to sleep.

She has her appointment with Dr. Inglis tomorrow afternoon to check on her progress and to see if he believes there are any changes or improvements. We are not expecting any big changes but it will be good to see him and get his opinion.                       

New photos.

Photos from May 5 2011.

Photos from May 5 2012.

Photos from May 5 2013.

All the best,

Wayne, Katie and Sadbh.