Sadbh’s update – June 7th 2013

Sadbh had a good night, but woke up around 6:15 and was very sad and emotional.  She ate two pieces of French toast for breakfast and was very upset when Katie started to make signs to go to work. 

Her neck was red and sore so Katie and Larissa put a piece of medical tape on it.  Sadbh was still very fussy and clingy and she really did not want Katie to leave for work. 

They packed up for a walk and all headed out.  Sadbh cried when Katie didn’t continue on down the block, but as soon as they got to the chickens, she was happy again. 

Larissa, Amy and Sadbh carried on to the Fire Station.  Sadbh was very scared at first, but she got to look at one of the engines and speak to a few Firemen.  She was shy, but interested.  She got a cute sticker and the gang returned home.

After a snack, it was time for trach care, which was a little rough since her neck was so sore and red.  She said "owie" to every spot Larissa touched as she cleaned.  Afterwards, she slept for a few hours and woke up to a nice dinner of fried rice, tofu, avocado and lots of frozen peas (she insisted on the frozen ones, maybe she’s getting more teeth?).

She continued to be very emotional and, at one point, she hung her head low and said “I’m sad.  I miss Daddy.”  Throughout the day, Sadbh insisted on looking at pictures of Daddy on the iPad. 

When Katie got home from work, Sadbh seemed to be in slightly better form.  They were able to get Daddy, Nana and Grandad on Skype and Sadbh was delighted to play a bit with them.

The rest of the evening was spent drawing, playing and eating.  Sadbh had a hard time going to sleep, even though she was completely wrecked.  She finally dozed off around 9:30, just in time for Danielle to arrive.

There is no doubt she feels the stress of the house currently.  She is very sad her Daddy is away and she can’t wait for him to return next Tuesday. 

We are also working very hard to sort out insurance issues and the clock is ticking towards June 24^th, when UnitedHealthcare is planning to terminate our nursing coverage.  Katie is working with an attorney on a 3^rd and final review and we will continue to fight for what is right from there. Sadbh requires licensed and skilled care around the clock to ensure her airway is open and we will fight for this.

New photos.

Photos from June 7 2011.

Photos from June 7 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 6th 2013

Sadbh slept well and woke up a few min before Helen’s shift ended.  She smiled and said “good morning” to Helen, just as Katie walked in the door.  After saying goodbye to Helen, Sadbh and Katie went upstairs and had a snuggle in our bed for a little while before they started the day.

Ali-baba and her friend Joyce stopped by this morning and the whole crew played for awhile in the back garden.  Sadbh had a fantastic time and loved playing with all the ladies.

Larissa and Amy managed trach care fine and Sadbh slept on for another few hours.  When she woke up, Wayne was home and getting packed up for his trip back to Ireland to visit Sadbh’s new twin cousins, Annabelle and Fionn. 

Sadbh and Wayne got to spend a little time together before Wayne headed off to the airport.  Sadbh was very sad to see him go and told him to be sure to come back. He will be gone for 5 long days and Katie and Sadbh are going to miss him terribly.

It was a lovely evening and Katie and Sadbh spent it in the garden.  Sadbh got to help Katie cut a bunch of fresh pink peonies and put them in a vase in the house.

The girls had a visitor this evening, a friend from France (Helene) sent a gift over with a friend.  Sadbh was delighted to see the beautiful little sundress and she was even more delighted to find a lovely pink bracelet to match!  

When it came time for bed, Sadbh was very tired and she went to sleep quickly. Hopefully she will have a good night sleep.  We’d really like to see her able to wear the cap more during the nights.

New photos.

Photos from June 6 2011.

Photos from June 6 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 5th 2013

Sadbh slept very well last night and woke up shortly after 7. Helen tried unsuccessfully to cap her a couple of times.

She was in a great mood this morning and had a decent sized breakfast.

The plan was to go visit the local fire station this morning but unfortunately it did not work out. Sadbh did some finger painting instead and had a wonderful time.

She painted two hearts, one for each of her new twin cousins. I’m sure they will be delighted to get them.

She wasn’t too corporative when it came to trach care, however, Larissa and Amy were able to get it done without a great deal of stress.

Sadbh slept for almost three hours and woke up not long before I arrived home from work.

She was in a wonderful mood and almost jumped out of her high chair when Larissa and Amy got ready to leave. Before they left she ran up, gave them each a huge hug and a kiss and told them to come back tomorrow.

The rest of the evening was spent playing with her toys and having fun.

It was bedtime before we knew it and thankfully Sadbh was ready for sleep.

New photos.

Photos from June 5 2011.

Photos from June 5 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 4th 2013

Sadbh woke up shortly after 2am and spent the next hour and 45 minutes hanging out with Helen. After demanding a seriously long back massage she finally dropped off to sleep.

It was 8:20 by the time Sadbh woke up and after a cuddle with Katie it was time for breakfast.

She had a great morning with Larissa and Amy and after trach care she took a nice long nap.

She had her pre-op appointment with Dr.Inglis this afternoon so she was rudely awoken by four of us. She wasn’t too happy to begin with but soon got excited to be heading off to see her doctor.

The visit went slightly better than expected and Dr. Inglis went over our options again.

The first option would be to go forward with her bronchoscopy next week, see how her vocal cords are doing and then remove any granuloma that has built up around the trach.

Afterwards we would continue to work on capping Sadbh’s trach as much as possible both day and night. We would then go in to Children’s for a sleep study. If she does well with the sleep study we would then be able to work towards possible decannulation.

Our second option would be to cut into one of her vocal cords to form a notch that would open up her airway enough for her to breathe without the need of a trach.

The third option would be to pry open her vocal cords by means of a rib graft. This would also open up her vocal cords enough to allow her to be decannulated.

We collectively decided on the first option but realize that there is a potential risk if she gets a cold.

Sadbh was in a fantastic mood throughout the appointment but could not wait to get home.

We interviewed a potential nanny candidate not long after we arrived home and she seemed like a good fit. We have a few more interviews set up over the couple of weeks.

When it came time for bed Sadbh was exhausted from her busy day. She was out like a light in no time.

New photos.

Photos from June 4 2011.

Photos from June 4 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 3rd 2013

Sadbh had a very deep sleep last night and did not wake until almost 8am.

Helen tried to cap her trach a couple of times and gave up after Sadbh pulled it off for the second time and then handing the cap to Helen in a very matter of fact manner.

She was in a fantastic mood and after a quick breakfast Katie and Larissa loaded the car and brought Sadbh to visit Dr. Cavanaugh for her cranial sacral appointment.

It was the best visit ever. Sadbh not only wore her cap the entire time but she narrated throughout the entire visit.

As Dr. Cavanaugh messaged her she would indicate when something felt good by saying “that feels good” or if she felt discomfort she would grimace and Dr. Cavenaugh would ask if it hurt and she would say “ya” with a smile. Eventually she had Dr. Cavanaugh, Katie and Larissa all singing to her as she layed there getting the royal treatment.

Once home it was time to play in the back garden. Amy soon arrived and joined in on the fun.

When it was time for trach care Sadbh was very relaxed and allowed Larissa and Amy to work their magic.

She had another great sleep afterwards and slept for two hours.

After lunch it was time to head out for a walk through the neighborhood and of course Sadbh had to visit the chickens. It was her lucky day as the owner was there and invited Sadbh to feed the chickens. She could not believe her luck and she had a wonderful time.

She was in a wonderful mood all-day and full of laughter and mischief.

Just before dinner she grabbed Katie’s phone to check out the chicken feeding video. She could not stop her eyes off of it and must have watched it over and over at least 20 times.

We made some yummy home made strawberry pizza for dinner and Sadbh obviously loved it. When Katie stepped away from the table Sadbh reached over and grabbed her slice. It was a real sneaky move but it was very well executed.

She wasn’t entirely ready for bed but after a nice long cuddle with Katie she was soon fast asleep.

New photos.

Photos from June 3 2011.

Photos from June 3 2012.

Sadbh’s update – June 2nd 2013

Sadbh is such a diva. She woke up a couple of times during the night while Danielle was trying to cap her trach. Each time she insisted on Danielle removing her cap and then insisted on having her back rubbed until she fell back to sleep.

She woke up at 7:20 and as soon as she realized that Katie wasn’t in the room with her she threw a fit.

I was able to calm her down and soon she was full of smiles and laughter.

For the next hour or so she played with her food and made the biggest mess. Lately she has not been eating much and today was no exception.

After getting dressed we all headed out to Capitol Hill to get the shopping done. Sadbh was happy walking along for the first few blocks but soon wanted Katie to carry her.

We had a great walk and Sadbh was fairly well behaved for the most part.

When we arrived home she was starting to show signs of getting tired so we gave her a bath and managed trach care.

Despite being tired it took an hour an hour and a half for her to finally drop off to sleep.

She tried every trick in the book to keep from going to sleep.

The rest of the day seemed to fly by really quickly.

Sadbh got to spend some time out watering her vegetables in the back garden and when she was done there we headed out for a stroll along the street.

She bumped into Charlotte and her parents who lives up the street. She could not get too close though as Charlotte is sick with a cold.

When we arrived home Sadbh wanted to take off all her clothes. She ran into the bathroom, grabbed some toilet paper and sat on her potty. I was hoping that she might be ready to use it but she was just having fun.

After pretending to go to the bathroom she proceeded to clean herself with the toilet paper.

It was so funny to watch and thankfully she repeated it over and over.

She did not eat much for dinner tonight and was soon sleeping her little head off.

Two years ago today Sadbh was discharged from the hospital. We were finally able to bring our little girl home for the first time since she was born.

Time goes by so fast but every day has been filled to the brim with challenges, fun, laughter, learning how to cope with Sadbh’s needs and being advocates for our princess.

When I loaded up the car two years ago with Sadbh and all her equipment I never imagined all the additional stuff that we were also bringing home with us.
Both Katie and I have learned more about ourselves and each other and have had to rise to meet the challenge. 
I'm so lucky to have such an amazing wife and without her I know it would have been a much tougher road.

New photos.

Photos from June 2 2011.

Photos from June 2 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 1st 2013

Sadbh slept great but only tolerated her trach cap for 8 minutes.

She slept right through until 7:20 and was in a wonderful mood when she woke up.

It was a gorgeous day so we headed out for a nice long walk. There was a community hopscotch event where they were trying to enter the Guinness Book of world records for the largest number of people hopscotching.

Sadbh really enjoyed being out and joined in on the fun.

Katie and I managed trach care as soon as we arrived home and rather than going straight to sleep we loaded up the car and headed up to visit our friend Grace and her parents Christina and Curtis.

Thankfully Sadbh napped for the drive and woke up just as we pulled up.

Both girls were very shy at first but after a while they were having a wonderful time playing with each other.

Grace had a lot of toys and Sadbh could not get enough.

Grace had a belated birthday gift for Sadbh and she was so happy when she received it.

The girls ended up having a brilliant time together and Sadbh did not want to leave.

We decided to have a family movie night and watched The Sound of Music.

Sadbh loved it but she had to go to bed before it finished.

It took a while to get her to sleep and thankfully she finally dozed off just after Danielle arrived.

New photos.

Photos from June 1 2011.

Photos from June 1 2012.

All the best,

Wayne, Katie and Sadbh.