Sadbh’s update – February 2nd 2013

It was a rough night sleep for Sadbh. Her temperature and other vitals were good, but she kept waking up and was very unhappy.

Julie was great and managed to get Sadbh back to sleep each time, however, by 6am Sadbh was wide awake and had no desire to go back to sleep.

She had a wonderful morning and despite the restless night she was full of energy and very happy.

Trach care came early today and Sadbh only napped for 20 minutes.

Since it was still quite early we decided to head to the zoo. We have been a few times in the last year or so, but each of those times Sadbh was a lot younger and did not really understand what was going on. Today she was very aware of all the animals and was able to relate to each of them from what she has learned at home. It was great to see her reaction to each of the animals and the excitement on her face.

Later we came across a carousel and thought Sadbh would enjoy going for a ride. Granddad volunteered to go along for the ride. It all went great until the thing started to move and suddenly Sadbh got very upset. She no longer wanted to be there but they could not get off until the ride was over.

It was heart breaking to see her bawling her eyes out every time she came around, and you could tell it was very upsetting and stressful for poor Granddad also.

Thankfully the ride did not last too long and Sadbh was soon a happy little girl in her mummies arms again.

She did get a quick nap during the drive home but it was not enough.

The rest of her evening was spent playing with Nana and Granddad since Katie and I had a guild meeting for the High Five Sadbh Guild.

She was fast asleep by 8:15 and thanks to her meds she was also a lot more comfortable.

New photos.

Photos from February 2 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – February 1st 2013

Julie worked last night and Sadbh had a fairly decent night sleep. Her heart rate, respiratory rate and temperature were higher than usual so we decided to call her doctor first thing in the morning to have her checked out.

She woke at 5:30 and was playing very coy. She kept asking for Katie, but after a quick game of hide and seek she was soon giving me huge smiles.

It was time for me to head off for work as soon as Katie arrived and as soon as I told Sadbh that I loved her she responded with “I love daddy” while also making the sign for “I love you”. Has to be the best way to start the day.

Katie was able to get her an appointment with her doctor for 11:30. Caity worked today so she joined Katie and Sadbh for the trip.

Thankfully, she was in a very good mood and she entertained everyone by dancing in the doctors office.

After giving Sadbh a good look over, Dr. Hathaway determined that Sadbh had an ear infection. She figured that the antibiotics were probably not strong enough to clear her HIB fully and now there was an infection setting in. She wasn’t too concerned and prescribed a new dose of antibiotics for the next 7 days. This should hopefully clear the infection before it gets any worse.

Despite the increase in temperature, heart rate and respiratory rate, Sadbh was in a great mood. She got to go out for a nice long walk in the sunshine and she really enjoyed herself.

Sadbh’s Christmas stocking arrived in the post today, even though they were ordered before Christmas. She was excited and immediately kicked off her slippers and had to put it on. It was so funny watching her try to walk with both legs in the sock.

She only had a 20-minute nap and that was before her doctors’ appointment today. By the time she was done eating dinner she was like a zombie walking around the house.

Just before bed we hooked up the nebulizer to her trach to help clear out her lungs. She was happy playing with her iPad and did not fuss much when it came time for her antibiotics. Her heart rate was starting to climb, probably due to the nebulizer, so we gave her some Ibuprofen to help make her comfortable.

Julie is working again tonight so we’re hoping Sadbh gets a good nights rest.

New photos.

Photos from February 1 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 31st 2013

Sadbh spiked a fever not long after Larissa’s shift started so Larissa gave her some Ibuprofen and got her back to sleep.

Her temperature dropped back down and her other vitals stabilized and Sadbh had a good night sleep.

She was wide-awake and very happy a little after 6am. Unfortunately, Larissa had already left so Sadbh could not thank her for taking good care of her during the night.

After breakfast she had a busy time playing with her kitchen and she was over the moon when Ali-Baba arrived.

They both got caught up on some good playtime and Sadbh was so excited.

When it came time for trach care, Sadbh was pooped and fell into a deep sleep after she was done with her bath.

Trach care went well but Sadbh only got 45 minutes sleep. This worked out quite well as she got to spend more time playing with Ali-Baba.

Sadbh had an appointment with her homeopathic doctor, Krista, today and she received an Opium remedy for her troubles.

She was very tired all evening but was still quite playful. She had Granddad and her doggie, Regal, lying on the ground pretending to sleep, much to everyone’s amusement.

Bedtime came much earlier than usual tonight as Sadbh fought hard to keep her eyes open.

She was very cuddly and full of kisses, but was out for the count by 7:20. Her temperature was starting to climb over 100 so we gave her Tylenol just before she dozed off.

New photos.

Photos from January 31 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 30th 2013

Sadbh had a better sleep and was a little bit more relaxed. She was up at 7 and was in a good mood. 

Caity was working today and Sadbh was happy to see her.

There was a break in the weather so Sadbh, Nana and Caity got to head out for a quick stroll. Sadbh was delighted to get out of the house and she really enjoyed the walk.

Trach care went well until Sadbh woke up as Caity was securing the trach ties, however, Sadbh soon fell back to sleep so they were able to finish up without any problems.

She slept for over two and a half hours and woke up in a better mood.

Caity noticed that Sadbh was running a temperature slightly higher than usual so she kept an eye on her respiratory rate and heart rate throughout the day.  Thankfully both were tracking as normal.

When it came time for bed tonight, Sadbh’s temperature and heart rate were starting to increase. This is a definite sign that she’s fighting something. Hopefully it’s nothing serious and that she will feel better in the morning.

New photos.

Photos from January 20 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 29th 2013

Sadbh slept a little bit better last night, but still not great. She woke up a very happy little girl around 7:20 and was very hungry for breakfast.

Despite the wet weather, Sadbh got to head out for a nice walk through the neighborhood. She was bundled up nice and snug in her stroller and she was delighted to be outside.

It was a fun filled morning and when it came time for her nap she was wiped out. She slept for an hour and a half and woke up very hungry. As soon as she was dressed she devoured a plate of pasta, cheese and other yummy foods.

Later in the afternoon Sadbh had an appointment with her cranial sacral doctor, Dr. Cavanaugh. He had some serious work to do since she was so sick over the past few weeks. He relieved a lot of pressure around her neck and torso due to all the coughing and extra effort to breathe.

It was a very productive visit and Sadbh will undoubtedly feel much better as a result.

We all had a wonderful evening and Sadbh had so much fun. It was amazing the amount of energy she had and when it came time for bed she had no desire to slow down.

I prepared her a nice bath however it seemed a little bit too hot for her royal highness. She actually asked me “daddy, cold water please” and of course I could not let her down.

It took forever to get her to sleep. I usually keep the monitor close to me as Katie tries to get Sadbh to sleep. This is so I can respond if needed.

Tonight I heard Sadbh say, “Wayne, water please”. At least she has manners.

She finally fell asleep so Katie and I started trach care. It went well until we were securing her trach ties. She woke up extremely upset and fought us tooth and nail. It was very stressful and but we were able to secure her trach tie and eventually get her calmed down.

New photos.

Photos from January 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 28th 2013

Sadbh had a restless night and woke up at 7. She immediately started to ask for Granddad and Nana and could not wait for the fun and games to start.

She had a great morning with plenty of playtime. She worked up a big appetite and ate a huge breakfast.

We are narrowing down our nanny candidates so today one of the nannies came by to meet my parents for a second interview.

It was a very good meeting and Sadbh got to play with her for a couple of hours.

Next it was time for Sadbh to take a nap. She had no problem going to sleep and slept for an hour and a half.

After dinner she wore her trach cap for 22 minutes until her airway started to get very dry. She had been wearing her Passy Muir Valve all day and I think it dried out her trach.

Later on she got to Skype with her aunt Trish and cousin Conor in New Zealand. She had a good laugh with her cousin and she had a great time showing off her many hats.

Later when it was time for bed, Sadbh started wearing the glasses and mouth from her Mr. Potato Head toys. It was comical and eventually she was stark naked running around with her favorite woolly hat and glasses.

Even though she was very tired, it took a while to get Sadbh to sleep. She was wired and had no desire to sleep.  Just before she dozed off, she suddenly grabbed her kitty cat and said “kitty fly” as she moved kitty through the air.  She then turned and started giggling, cracking herself up about the flying kitty.  It was hysterical.

As soon as she dozed off we were able to manage trach care.

Hopefully she will have a much better night sleep tonight.

New photos.

Photos from January 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 27th 2013

Sadbh slept like a log and did not budge all night. It must have been a boring night for a change for Julie, as Sadbh did not even need to be suctioned once.

Julie finished her shift at 6 and Sadbh slept on for another 45 minutes. She woke up very happy and gave me a big smile as soon as she saw me.

After breakfast she started to have a coughing fit but thankfully she did not get sick.

We had a fun filled morning and before we knew it, it was time for her nap and trach care.

It was another wet day so our plan was to let Sadbh sleep for a while as we prepared all her equipment and snow clothes, and as soon as we were ready we would put her into the car and head up to the mountains for a bit of fun in the snow.

Sadbh slept through trach care but woke up just as Katie and Granddad were finishing up. She was in a happy mood and after Katie explained what our plan was she could not stop talking about snowmen.

She was too excited to sleep in the car and as soon as we arrived at Snoqualmie Pass, Sadbh could not wait to get out of the car. It was snowing like crazy and she was looking out the window with a huge smile on her face.

Katie bundled her up good and proper and handed her out to me while she got ready. Sadbh had this hilarious look on her face. I sat her up on the top of this snow pile and she just sat there in complete awe of all the snow around her. Granddad built her a little snowman and she was delighted with it.

The fun was only starting as we headed up the hill for some sledding. Sadbh was nervous at first but was soon asking for more.

She was having a fantastic time but we could hear that her airway was starting to dry out due to the cold dry air.

We figured that she would sleep on the trip home but she was still very excited from all the activity.

Bedtime came earlier than usual for Sadbh and she was full of hugs and cuddles. I have a scruffy beard since I haven’t shaved in a few days and Sadbh just sat there and rubbed my chin for a while. She couldn’t stop laughing and we thought she would never go to sleep.

She finally gave in and dozed off into a deep slumber.

Julie is working again tonight so we are sure that Sadbh will get yet another good night sleep.

New photos.

Photos from January 27 2012.

All the best,

Wayne, Katie and Sadbh.