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.

Sadbh’s update – May 4th 2014

Sadbh slept great and woke up happy to see Mommy shortly after 7.

Since we could not persuade Sadbh to allow us to manage her monthly trach change yesterday we planned an active morning in the hopes that she would take a nap, which would allow us to change out her trach.

Uncle Andrew stopped by later in the morning and got to give Sadbh a rocket ship ride around the house a few times.

Afterwards we brought Sadbh out for a walk and down to the local playground. It was still very wet but Sadbh had a fantastic time on the climbing bars, sliding down the slide and going around and around on the round-a-bout. She had so much fun.

By the time we got home Sadbh was very tired but also very cranky. We eventually managed to get her off to sleep but when we tried to take her top off she woke got very upset and refused to allow us to do trach care, not to mention changing out her trach.

After a very long and frustrating stand off we finally were able to get Sadbh swaddled up for trach care but she was very adamant that we could not change her trach.

We were able to distract her with a movie on Katie’s phone and as soon as we got trach care complete Katie and I quickly changed out her trach. She was so upset when I put the new one in but it worked and we were able to secure her trach ties.

Katie and I were both wiped out but extremely relieved that we were able to get this month’s trach change completed.

We had promised Sadbh a cupcake for allowing us to change out her trach so I headed up to Capitol Hill to get her one, which she devoured as soon as I arrived home.

We received a surprise visit from our dear friend Kati this evening. She is visiting from San Diego and Sadbh was so excited to see her. The last time Sadbh saw Kati was when she was four months old but she chatted to her as if she had seen her recently.

When we got home Kati painted Sadbh’s toes with nail varnish to match her own. Sadbh was so proud. She even tried to paint my toes.

New photos.

Photos from May 4 2011.

Photos from May 4 2012.

Photos from May 4 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 3rd 2014

Danielle suctioned Sadbh’s trach a few times throughout the night but all in all Sadbh had a great night sleep.

She woke up shortly after 8 and was just in time to get a snuggle from Mommy before Katie headed out the door to yoga.

We attended a memorial service today and Sadbh was very well behaved.

She got to meet a lot of Ali-Baba and Kirk’s friends and in between meeting new people she ate her fair share of cake.

By the time we got home she was starting to wind down from her sugar high. We hoped that she would take a nap after her bath and since we have trach change scheduled for this weekend our goal was to take care of this if we got her to sleep. Despite getting everything sanitized and set up for trach change Sadbh got another blast of energy so we postponed changing out her trach until tomorrow.

The weather was terrible so we spent rest of the evening watching movies and snuggling on the couch.

By bedtime Sadbh was very tired so it did not take any effort to get her tucked into bed and off to sleep.

New photos.

Photos from May 3 2011.

Photos from May 3 2012.

Photos from May 3 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 2nd 2014

Sadbh had a very good night sleep however at one point Helen had to put her back to bed as she was starting to climb out while sleep walking.

She slept soundly until 7:30 when she woke up in a great mood.

After a big breakfast and lots of playing we headed out into the garden to finish building Sadbh’s house. She was way too excited and kept getting in the way of progress. That said, she was quite helpful at times and we were able to get the project finished just before it started to rain.

By the time we got back into the house we were both very tired and Sadbh and I took a quick nap on the couch. She snuggled right into me and fell into a deep sleep.

Sadbh’s nap resulted in her not falling asleep until almost 10 just before Danielle arrived.

Hopefully she will not try to go sleep walking again tonight.

New photos.

Photos from May 2 2011.

Photos from May 2 2012.

Photos from May 2 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 1st 2014

Sadbh woke up shortly before 8 after a great night sleep. She was not in the greatest of moods and we had a rough start to the day.

Sadbh and I had a terrible day and neither of us got along all day. It was a major struggle to get along and by the end of it we were both wiped out. I suppose we are both too alike.

Our friends Charlene and Keith called us later in the day to invite us out on their boat. It was a beautiful evening so we could not pass up the kind offer.

Sadbh had a great time exploring their boat and after a stressful day we had a very fun evening.

New photos.

Photos from May 1st 2011.

Photos from May 1st 2012.

Photos from May 1st 2013.

All the best,

Wayne, Katie and Sadbh.