Sadbh’s update – January 31st 2014

Sadbh slept great and woke up in a fun mood this morning. We had a great time making each other laugh and grabbing at each other through the bars in her cot.

She had an appointment with Dr. Cavanaugh, her cranial sacral specialist, first thing and even though she was shy we were able to convince her to allow Dr. Cavanaugh to work his magic on her. Feeling around her neck and head he could see how much she has grown since our last visit in December and he made the necessary adjustments.

Sadbh was very excited to learn that Erin and Andrew were coming over for dinner and was very happy when she heard the knock on the door.

She had a lot of fun introducing them to her friends Kipper, Arnold and Tiger. She even showed them the cartoon, which stars her friends.

When it came time for bed she sang her good night song and soon she was fast asleep.

New photos.

Photos from January 31 2012.

Photos from January 31 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 30th 2014

Sadbh slept until I woke her at 8. She was enjoying her sleep but woke up with a big smile.

After breakfast we headed over to Wallingford to her music class and she could not wait to get there. As soon as the class started Sadbh got very shy and you could tell that there was something up as she was not really too happy or interested in participating.

It was still very stressful nevertheless as it was a full class and there were a number of kids coughing.

Jenna and I got Sadbh into the bath as soon as we got home and once she was clean and in fresh clothes we managed trach care. She was extremely accommodating and helped us get through it very quickly.

The rest of her day was great and she had a lot of fun playing with her toys.

When it came time for bed she was wired to the moon so it took a while to get her to sleep.

Our latest update on the insurance companies denial for home care nursing coverage is that Sadbh’s doctor, Dr. Inglis, was scheduled to have a “peer to peer” conference call with the insurance companies doctor. Unfortunately the insurance companies doctor dropped the ball and did not join the conference. Dr. Inglis tried in vain to get a hold of them and eventually gave up. He’s out on holiday all this week so the conference call has been rescheduled for February 5^th.

A final decision will not be made until that call has taken place so I hope they answer the phone when Dr. Inglis calls on the 5^th.

New photos.

Photos from January 30 2012.

Photos from January 30 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 29th 2014

Sadbh woke up much earlier than usual but kindly hung out in her cot for an hour before demanding that it was time to get up.

Ali-Baba stopped by to play and Sadbh got to play with her tea set. As expected, Sadbh had a fantastic time and when it came time for trach care Ali-Baba helped out.

Sadbh was sad to see her go but she was ready for some quiet time so she was happy to hang out in her room reading books.

Later in the evening Uncle Neil stopped by for a cup of tea and Sadbh was delighted to see him. She was in the middle of playing with her toys in the basement and as soon as she realized that he was here she dropped everything and came flying up the stairs to see him.

She was wiped out by bedtime and fell asleep after Mommy read her a bedtime story.

New photos.

Photos from January 29 2012.

Photos from January 29 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 28th 2014

Sadbh slept like a log and woke up smiling across the top of her cot at me.

Just before breakfast Sadbh asked Mommy to play her favorite new song that Ali-Baba introduced to her over the weekend. It’s one of those songs that gets stuck in your head but regardless Sadbh loves it.

She had a wonderful day and did everything that was asked of her. It was quite the contrast to last week and you could tell that she enjoyed her day more because of it.

Trach care was easy today since Sadbh was happy to go along with it. Afterwards she had her daily quiet time and read a few books in her room.

I had an appointment this evening and as I was going out the door Sadbh reached over gave me a kiss and she said, “come back again sometime”. It was too funny.

She had a ferocious appetite for dinner tonight and ate her weight in food. When it came time for bed she snuggled up to Mommy and was out in a flash.

New photos.

Photos from January 28 2012.

Photos from January 28 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 27th 2014

Sadbh slept great and did not require any suctioning whatsoever. I checked on her at least seven times during the night and cleared the humidifier hose of condensed water build up each time.

She woke herself with a nice loud fart shortly after 7. I did my best to stifle my laughter in the hope that she would go back to sleep for a while but she was up and ready to start the day.

It was a foggy damp day so Sadbh was housebound. She had a great time and was in a fantastic mood all day.

Trach care went really well and she even hung out in her room reading books afterwards as part of her “quiet time.”

Bedtime this evening went really well and Sadbh was out light a light shortly after going to bed.

New photos.

Photos from January 27 2012.

Photos from January 27 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 26th 2014

Sadbh slept in late again this morning and woke up very happy to see Mommy.

It was a beautiful day so after trach care we loaded up the car and headed off to the zoo. Sadbh was all excited but as we pulled into the car park she decided it was a good time to take a pee. Unfortunately, she was not wearing a diaper so she was soaked through, as was her car seat.

We were all disappointed that we did not make it to the zoo.

Our night nurse’s son fell and cut his head this evening and had to visit urgent care. As a result we are without a nurse tonight so I will be spending the night with Sadbh.

New photos.

Photos from January 26 2012.

Photos from January 26 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 25th 2014

Sadbh slept in until almost 9 and woke up in a great mood. She thanked me for being there when she woke up and gave me a huge hug.

After breakfast Ali-Baba came by and helped Mommy with trach care. Once that was taken care of the three ladies bundled up in the car and headed over to Ali-Baba’s place to watch a movie. Sadbh was so excited and could not wait to help make the popcorn.

She was exhausted when it came time for bed but she still had a serious amount of energy so it took a while before she finally fell asleep.

New photos.

Photos from January 25 2012.

Photos from January 25 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 24th 2014

During breakfast this morning Sadbh told me that she wanted to make me happy and that she would do as I asked throughout the day. 

Jenna’s shift did not start until 2 so Sadbh and I had the entire morning together.

As soon as breakfast was over and done with we loaded up the stroller and headed out up to Capitol Hill for a walk. It was a beautiful sunny day so of course Sadbh had to wear her sunglasses.

She looked fantastic and received so many smiles along the way. She even had one woman call her Miss Hollywood and another guy called her a rockstar.

By the time we arrived home Sadbh was tired and hungry. Unfortunately she turned into a little diva and would not eat her lunch.

Trach care was difficult as she had no desire to participate but she eventually gave in and allowed Jenna and I to get it done.

New photos.

Photos from January 24 2012.

Photos from January 24 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 23rd 2014

Sadbh had another good night and had very active dreams again. Her heart rate was higher than usual but she did not wake and slept right through until 7:40.

Sadbh is showing signs of her age and is very opposed to doing anything I suggest. It takes forever to get her to eat, she does not want to take her bath or allow us to do trach care, she doesn’t even want to go for walks. Unfortunately every time she pushes back she get’s upset and then struggles to breathe.

It’s been very frustrating and extremely stressful. Today was no exception and at bedtime I asked her if she could be a little more open to going with the flow tomorrow, in which she replied “no!.” I shouldn’t have been surprised with her response but it was quite funny.

Despite her moments of being difficult Sadbh had a good day and when it came time for bed she was exhausted and fell asleep quite quickly.

New photos.

Photos from January 23 2012.

Photos from January 23 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 22nd 2014

Sadbh’s heart rate was elevated throughout the night and was in the upper 120’s when it’s usually in the low 90’s.

I was initially worried that she was fighting something but it soon dropped back into her normal range shortly after I took over from Kysha.

Her temperature and respiratory rate was also fine so it’s quite possible she was having a very active dream.

She had a great day and ate a lot of food throughout. When it came time for trach care she was very tired and cranky so we gave in and she took a nap for an hour. It did the trick and she woke up in a great mood.

The sun had burned through the fog and clouds so we loaded up the stroller and headed out for a walk. Sadbh stopped by to say hi to the chickens along the way.

After dinner this evening she got to eat the rest of her cup cake and she had it devoured in no time at all. I could not believe how quickly she gobbled it down. Thankfully it was a mini cup cake.

New photos.

Photos from January 22 2012.

Photos from January 22 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 21st 2014

Sadbh slept right through until almost 7:30 and woke up very happy. We kick started the day with breakfast and as soon as she had that finished she devoured a mini cup cake I had gotten her yesterday as a treat.

Jenna had the day off today so Sadbh and I had the day to ourselves.

After breakfast I gave Sadbh a saline nebulizer and we read a couple of books.

Later we played with a few of her puzzles. One of the puzzles is a word game where you find the letters for each word and you place them in the

Correct place. Everything went great until she came to the pig when she called out “pig” and then said, “that’s my Ali-Baba”. A few days ago she learned that Ali-Baba’s real name is Peggy and either she cannot differentiate between Piggy and Peggy or she is just messin’.

Her friends Conor and Aibhin came by for a play date later in the morning and Sadbh was excited to see them. It took the usual amount of time for the kids to warm up but soon Conor and Sadbh were enjoying themselves driving around the house.

Sadbh has a difficult time sharing her toys and at times she would not allow Aibhin to play with her things. I suppose it’s normal for two year olds but it can be frustrating to watch.

Sadbh was quite tired when it came time for Conor and Aibhin and a short while later I put her down for a nap. She slept for an hour and a half and woke up a lot more cheery.

We had a great evening playing with her toys in the basement and when Mommy arrived home we played hide and seek until Mommy found us. Sadbh thought it was hilarious and did not do a great job concealing our hiding place.

Katie and I managed trach care just before bedtime and since Sadbh was so tired it was an easy enough undertaking.

New photos.

Photos from January 21 2012.

Photos from January 21 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 20th 2014

Sadbh slept great but woke up shortly after 6. She quietly lay in her cot for a while but eventually she wanted to get up. Since it was still quite early I tried to get her to go back to sleep but the end result was that Sadbh was up and both of us were very cranky with each other.

After breakfast, Sadbh, Jenna and I took a trip to Costco to pick up a few things. Along the way we stopped off to drop something off with Mommy and Sadbh was so happy to see her. She was in disbelief when Mommy opened the door to give her a big kiss.

Costco was busy as usual but we were fortunate to get parking close to the entrance. I loaded up the stroller with all of Sadbh’s equipment while Jenna got Sadbh’s jacket and shoes on and got her out of the car. Unfortunately when she went to close the door she did not keep her eye on Sadbh and hit her with the door knocking her to the ground.

Poor Sadbh was in an awful shock but I quickly had her in my arms and was able to remove her trach cap so she could breathe easily. When she gets upset or very excited she struggles to breathe with the trach cap on.

Thankfully Sadbh was not hurt, other than the surprise of it all.

When we got home we took care of trach care and Sadbh was very cooperative.  The early morning got to her and she got very sleepy.

Rather than allow her to sleep, which would prove very difficult to get her to bed in the evening, she had a big lunch and then we headed out to Nora’s Woods for a walk. It was a beautiful sunny day and she was delighted to be out and about.

By dinnertime Sadbh was a zombie however she had a huge appetite and kept eating everything that was put in front of her. She ate twice as much food as I did.

Despite going to bed almost and hour later than usual, bedtime was very easy.  After a nice snuggle with Mommy Sadbh was fast asleep in no time whatsoever.

New photos.

Photos from January 20 2012.

Photos from January 20 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 19th 2014

Sadbh slept like a log and woke up well rested shortly after 7 this morning.

Like yesterday Mommy had taken over from Danielle and Sadbh was delighted to see her sitting at the end of her cot.

The ladies made bisquits for breakfast and afterwards Sadbh wanted to head upstairs to make sure that I was awake and gave me a huge kiss.

We got trach care out of the way as early as possible today and despite her initial resistance she soon allowed us to get it done.

She was very tired but after a snuggle with Mommy it was back to playing with her toys.

Later Sadbh and Mommy baked salted chocolate chip cookies. They were scrumptious but Sadbh did not want to share them, especially with me. I suppose at this stage she knows that I have a sweet tooth and she runs the risk of me eating more than my fair share.

In the afternoon we headed to REI to get my bike serviced and Sadbh was very interested in what was being done to the bicycle.

She eventually got bored so Mommy brought her for a walk around the store. Sadbh was over the moon when they came across the kids play area, which had a huge play tree house. Typically we do not let Sadbh near kids play areas due to the increased risk of her catching a cold or something similar. However today it was very quiet in REI so we decided to allow her to venture on.

Sadbh was having a great time climbing through the tree but when it came time to cross over the narrow bridge to the next tree she froze and got very scared. She started to struggle to breathe so Katie climbed up through the tree to help calm her down and to remove her trach cap so she could breathe normally again.

Despite all this excitement Sadbh did not want to leave the play area.

By bedtime Sadbh was bouncing off the walls and was extremely hyper. It took a few minutes to calm her down and moments later she was off to sleep.

New photos.

Photos from January 19 2012.

Photos from January 19 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 18th 2014

Sadbh’s humidifier compressor was acting up during the week and we needed to get a replacement during the night. Around 1am we checked the pressure settings and it was way too high so we called the medical supply company. Thankfully their respiratory therapist was available and delivered a new compressor an hour and a half later.

As he was setting up the new compressor Danielle turned on the humidifier a little too early and it started to alarm. She was convinced that the wiring might have gone bad so I changed out all the wiring and finally the water cartage because nothing seemed to solve the problem.

Eventually I figured out that the wrong button was pressed when Danielle first tried to silence the alarm and this turned off the heater.

Luckily Sadbh slept through the whole ordeal.

Katie took over from Danielle and Sadbh woke up just as Danielle was leaving. She was in a fantastic mood and was delighted to see Mommy there in her room.

I woke up as Sadbh approached my side of the bed and asked me if I had a good night sleep and then she gave me a big kiss. It was so sweet.

She then proceeded to tell me that she had a poop and it was smelly.  I was rolling around the place in hysterics.

Sadbh had a nice long bath and afterwards Katie and I managed trach care. She looked so tired but did not want to miss out on any of the fun so she settled for a big snuggle with Mommy and before she knew it Ali-Baba was at the door.

Katie made some popcorn and they were talking about how popcorn and movies go well together and that Sadbh could go to the movies some day.   Within no time, Sadbh had grabbed a little bag, put her popcorn in and was ready to go to the cinema.  Unfortunately, she had misunderstood and as soon as she realized that they were not going to the movies after all, she was very upset.

The ladies all went shopping for a few hours in the afternoon and Sadbh really enjoyed spending so much time with Ali-Baba.  In the car, Sadbh spotted a great big “W” (for the University of Washington).  She immediately said “W” is for Walsh!  She was delighted with herself and continued to spot different letters from her name. 

She asked Ali-Baba what her name was.  Ali-Baba responded that her name was Peggy.  At that point, Sadbh started explaining that she had been to a farm and she saw a piggy there and that Ali-baba needed to go to the farm.  Katie and Ali-baba thought that was hilarious and the 3 ladies had a good laugh together.

This evening she was delirious from the lack of sleep. She had a lot of fun but you could tell that she could not wait for bedtime.

New photos.

Photos from January 18 2012.

Photos from January 18 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 17th 2014

Sadbh woke up shortly after 7 and called out across the room to me in the sweetest voice “good morning daddy”.

I was frustrated working on the insurance claim and she instantly put me in a much better mood.

Ali-Baba and Kirk stopped by this morning to play with Sadbh and she was so excited when she heard them knock at the door.

They all spent the morning having tea and playing with Sadbh’s dolls. She loved all the attention that she received and was very sad when they left.

Jenna and I managed trach care and Sadbh spent the next hour or so hanging out in her room reading books.

Ali-Baba and Kirk came over for dinner in the evening and Sadbh could not believe her luck. Twice in one day! She had a fantastic time with Ali-Baba and even got tangled up in Ali-Baba’s ball of wool.

Needless to say she was pooped when it came time for bed and was out cold in a matter of minutes.

New photos.

Photos from January 17 2012.

Photos from January 17 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 16th 2014

Sadbh had music class again today and she really enjoyed it. It was extremely stressful since there were a few kids coughing and one kid coughed directly into Sadbh’s face. Not intentionally but it happened nevertheless. I hope Sadbh does not get sick as a result.

As soon as we got home it was off with her clothes, into the bath and after she was dressed in a new outfit we took care of trach care.

After lunch we headed off up to the playground in Madrona for a walk and Sadbh was very excited when she saw the swings and slides. There were only a couple of other kids so we cleaned everything down so Sadbh could have a go. Soon she wanted a go on everything in the park and it became impossible to clean everything.

It was well worth it though as she had a fantastic time and could not stop smiling.

The days activities wiped her out and after we all got hugs and snuggles Sadbh was soon fast asleep.

Our appeal has been submitted to the insurance company so we hope to have an update on our case early next week. Fingers crossed it won’t get dragged out any further.

New photos.

Photos from January 16 2012.

Photos from January 16 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 15th 2014

Sadbh had a very good night and woke up eager to see Mommy. Unfortunately Mommy had already left for work and Sadbh was very upset. It did not take long before I had her in a good mood again.

Jenna’s shift started later than usual and she arrived with hot chocolate for Sadbh. Sadbh was so excited she almost choked on her drink.

We got trach care out of the way as soon as possible and since it was a nice day we headed out to Nora’s woods for a walk.

It was the first time in ages that Sadbh was out for a walk and she was thrilled.

Sadbh had a fun day and spent the evening pretending that we were her favorite cartoon characters while taking turns being doctors and patients. I was Kipper while she chose to be Pig. She has some imagination.

Bedtime could not come fast enough for Sadbh and despite having a fun evening she was fast asleep as soon as her head hit her pillow.

Both Katie and I, along with her HR team, the nursing agency and our lawyer have been working hard since Monday to put together an appeal to fight Sadbh’s nursing denial. It’s going to take a while longer but we are determined to win.

New photos.

Photos from January 15 2012.

Photos from January 15 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 14th 2014

Sadbh woke up well rested after a great night sleep. She was excited to see Jenna as it was Jenna’s birthday and Sadbh had made her a very nice birthday card last night before going to bed.

As soon as Jenna knocked at the door Sadbh went running to greet her. It took her a moment but soon she was singing “happy birthday” to her. After breakfast she got to eat a couple of slices of Jenna’s birthday cake.

Sadbh had a very good day and did not put up a fuss when it came time for trach care. She wanted to nap afterwards but since it’s been difficult getting her to sleep these last few days I insisted on some quiet time instead. She was happy reading books for the first half hour or so but soon grew bored and spent the rest of the time pacing around her cot.

After dinner I was watching some videos on home improvement projects and Sadbh was very interested. She snuggled up next to me and was glued to the monitor.

Bedtime was very easy and she was like a light in no time at all.

New photos.

Photos from January 14 2012.

Photos from January 14 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 13th 2014

Sadbh woke up once during the night and asked for Katie as soon as she saw Kysha. Thankfully she was still very tired and very quickly fell back to sleep without the need for Mommy.

She had a fun day and was very tired when it came time for trach care. She initially put up a fight and would not allow us to do trach care but soon gave in and afterwards she took a nap for almost two hours.

We have been proactive with the insurance company since November to make sure that Sadbh’s nursing coverage continues however we received word today that she has been denied coverage retroactive from January 1^st.

This does not come as a big surprise, however, we are extremely disappointed that they have chosen to deny coverage.

As before, we are going to fight this decision. Here we go again!

New photos.

Photos from January 13 2012.

Photos from January 13 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 12th 2014

I could hear Sadbh stirring shortly after half seven so I stuck my hand through the rails into her cot. She grabbed on tight and held only my hand as she snoozed on for a while longer. It was such a magical moment and a wonderful way to start the day.

Sadbh kept asking to hang out with Clodagh and Cormac so later in the morning we dropped by for a while.

The girls had a fun time together and later in the day Clodagh came over to our house.

The day’s fun and games wore Sadbh out and by dinnertime she was very tired. We still had to manage trach care but thankfully Sadbh nodded off to sleep without any difficulty afterwards.

Before she fell asleep Sadbh was proud of her new pillow. It’s her first and it was great to see how happy it made her.

New photos.

Photos from January 12 2012.

Photos from January 12 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 11th 2014

Danielle tried unsuccessfully to cap Sadbh’s trach last night and despite being in a deep sleep Sadbh grew very restless and even woke up crying. As soon as the cap was removed she calmed down and fell back into a deep sleep.

Mommy had a yoga class this morning so Sadbh and I had fun playing. I got my exercise running around the house with Sadbh on my back.

By the time Mommy got back I was wiped out but Sadbh was still full of beans.

Ali-Baba stopped by for a visit and she was able to take over playing with Sadbh.

Bath time and trach care was very quick and easy as Sadbh was eager to get back to Ali-Baba and continue with the fun.

Jenna worked today for a few hours so Katie and I could go to the movies. Sadbh was not very keen on the idea but when she learned that they would be baking cookies she changed her tune.

Ali-Baba hung around for a while longer and Sadbh had a fantastic time.

Sadbh, with the help of Jenna, baked some very tasty chocolate chip cookies (Katie’s Aunt Cammy’s reciepe). She had a couple by the time we arrived home and you could tell that she was enjoying the sugar rush.

The rest of Sadbh’s evening was spent playing and having fun and since she did not have a nap it was very easy getting her to sleep.

New photos.

Photos from January 11 2012.

Photos from January 11 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 10th 2014

It was another busy morning for Sadbh as her new night nurse, Kysha, spent a few hours training with Jenna and Sadbh today.

Sadbh was very shy when Kysha arrived and came running into my arms. It was a strange reaction as she was very friendly when she met Kysha on Monday night. It took a good half hour before Sadbh finally warmed up but she was never far from my side the entire time.

Trach care went well but Sadbh was wiped out and fell asleep straight afterwards. She slept for almost two hours and woke up with a very big appetite.

The evening was spent playing with her dollhouse and new puzzles and board games.

She got a nice long snuggle with Mommy at bedtime and was fast asleep by 9.

New photos.

Photos from January 10 2012.

Photos from January 10 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 9th 2014

Sadbh slept great and only needed to be suctioned once. Helen could hear some secretions building up in her upper lungs around five so she suctioned and cleared everything up.

Sadbh woke up in an excellent mood just before 8 and could not wait to get upstairs to Mommy.

We had a very busy morning as her nurse supervisor, Caity, was scheduled to stop by for a recertification visit.

We signed Sadbh for a music class and the first one was today. She was so excited to go to “school” that she could not stop talking about it all morning. For some reason she thought that she was going to be taking the school bus to her class and was extremely upset when she realized that she was not.

The class was fantastic and Sadbh was the first one to get up to dance. She was soon followed by all the other kids.

The music was great and Sadbh got to play all sorts of fun instruments.

Her friends Clodagh and Cormac where there and she got to dance with them for a couple of songs.

When it came time to leave Sadbh got very upset and asked if we could go to Clodagh’s house. Thankfully their nanny was heading back to the house so we tagged along for a visit. Sadbh was thrilled.

The fun continued and the three kids had a great time playing together.

Sadbh got very sad when we finally had to leave but just as we were about to go, Clodagh offered Sadbh any toy of her choice. It was very sweet and it cheers Sadbh up immediately.

By the time we got home Sadbh was exhausted and very cranky. Getting her into the bath was a nightmare but as soon as she was dried off it did not take long before she fell asleep allowing us to manage trach care without any problems.

She had so much energy for the rest of the evening and just before bedtime Sadbh, Mommy and I pretended to fall asleep on the rug in the living room. Sadbh was snuggled between Katie and me and out of nowhere she said “I wish we could go to the moon, I wish I could fly, I wish we could jump in the ocean, I wish I could snuggle with daddy”.

It was such a sweet moment.

Bedtime came easy enough and soon Sadbh was fast asleep in her cot.

It had been a fun and exciting day for Sadbh but very stressful and exhausting for me. Trying to keep her clear of any potential germs during the music class kept both Jenna and me on our toes but it was so rewarding to see Sadbh have so much fun.

New photos.

Photos from January 9 2012.

Photos from January 9 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 8th 2014

Sadbh’s night was much better and she did not require any suctioning whatsoever. She woke up just before 8 in a great mood and was very excited when I was there playing hide and seek with her.

After her nebulizer she came out to help me make French toast in the kitchen. Just like yesterday, she did a fantastic job at beating the egg and getting the bread properly soaked.

She had a great day and was happy to allow us to manage trach care. Afterwards she took a well earned nap and slept for an hour and a half.

The rest of her evening was fun and when it came time for bed it took an hour or so to get her to sleep.

It seems that she is over the worst of her cold, as she only needed to be suctioned a few times throughout the day.

New photos.

Photos from January 8 2012.

Photos from January 8 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 7th 2014

Sadbh needed to be suctioned a number of times throughout the night and even before Helen arrived she coughed herself awake.

She had a decent enough night considering all the coughing and woke up bright and early just after Helen’s shift ended.

After waking up, she snuggled with Mommy for an hour or so and I suctioned her trach approximately every five minutes. Eventually we gave her a saline nebulizer and once we were done with that we brought her upstairs to the shower so she could breathe in the steam to help with her secretions.

Despite all the coughing and extra suctioning she had a fun day and was in a very good and playful mood.

Her energy ran out after her bath and she fell asleep as we got her ready for trach care. She slept for two hours before finally waking up.

She needed a lot of suctioning during and after her nap and she even helped Jenna suction at one point by applying pressure to the suction catheter.

Sadbh was still very groggy but soon we both got busy baking in the kitchen. She is a pro at beating an egg and getting all the ingredients ready. I was very impressed.

She was very energetic this evening and thankfully she wore herself out in time for bedtime.

After some snuggles with both Mommy and I, she jumped into bed and drifted off to sleep in no time.

New photos.

Photos from January 7 2012.

Photos from January 7 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 6th 2014

Sadbh had a very good night and woke up extremely happy shortly after 8. She even declared that she was felling better.

Thankfully she was indeed over her fever and she was full of energy.

We had trach change scheduled for last week but due to Sadbh’s fever we postponed it until today. She did not want to nap so I explained to her what our plan was and she was onboard with helping out.

Everything went well until I inserted the new trach into her stoma. For some reason it hurt her and she got very irritated and struggled to break loose from her swaddle.

It created a very stressful moment as we had to secure her trach ties as quickly as possible and make sure that the trach was correctly placed in her airway.

Eventually we were able to calm Sadbh down and we were also able to make sure that her trach was ok. It was so upsetting to see Sadbh in such distress.

Later in the evening Sadbh was starting to show signs of fatigue and a runny nose and she almost fell asleep while eating.

We had a meet and greet with a new night nurse at 6:30 so it was a little hectic around the house as soon as Mommy arrived home from work. Dinner was ready but we wanted to make sure that we had all eaten before the new nurse arrived as typically these interviews can go on for an hour or longer.

The meet and great went well and we think this new nurse might work out.

 

New photos.

Photos from January 6 2012.

Photos from January 6 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 5th 2014

Sadbh had a much better night and woke up shortly after 8. She was in a good mood and her temperature was lower than it has been since Thursday.

She had a good morning but her temperature started to rise as the day went on.

Since she has been house bound all weekend we bundled her up and went up to Capitol Hill for a quick walk. She was very happy to be out and enjoyed being in the sunshine.

Eventually a glazed look came over her face and you could tell that she had enough.

When we got home she was in a much happier mood but was running a slight temperature.

After dinner she wanted to have a bath with Mommy and this cheered her up greatly.

As soon as she was dried off we took care of trach care and not long after we finished she dropped off to sleep.

By bedtime her temperature and heart rate were normal so fingers crossed she is over this virus that she has been fighting.

Thankfully her secretions today were normal and it does not seem that she has any other discomforts.

New photos.

Photos from January 5 2012.

Photos from January 5 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 4th 2014

Sadbh had an ok night sleep but ran a fever shortly after midnight and wanted to snuggle with Mommy. Katie and Danielle gave Sadbh some Tylenol to help bring her temperature back down and after a long snuggle Sadbh was back in bed fast asleep.

I took over from Danielle at 6 and Sadbh seemed to be very comfortable. She woke up around 8:30 and was not very happy. Her temperature was on the rise again and she insisted on another snuggle with Mommy.

She was definitely a lot more lethargic today compared to the past couple of days and at one point she just fell asleep in the armchair.

Eventually she woke up very upset and asked Katie for a cupcake. She was so wiped out and all she wanted was a cupcake.

Sadbh was so excited when I pulled up the driveway with not one but two cup cakes.

Sugar is not good for a fever but Sadbh deserved a treat and she certainly enjoyed it.

Later in the evening she had a bath with Mommy and after that we managed trach care.

Her fever started to spike again just before bedtime so we gave her some Ibuprofen, a saline nebulizer and got her ready for bed. Hopefully she will have a better night sleep tonight.

New photos.

Photos from January 4 2012.

Photos from January 4 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 3rd 2014

Sadbh’s fever peaked shortly after 2am at 102.4 degrees. Helen had given her Tylenol at 1:20 but it seemed to take a while to take affect.

When I took over at 6 her temperature was starting to spike again so I gave her another dose of Tylenol. She had woken up and was playing hide and seek from both Helen and me. It was very funny to watch.

Thankfully she fell asleep for another couple of hours but was very sad to learn that Mommy had left for work. It took me ages to calm her down.

Caity, Sadbh’s nurse supervisor stopped by for a visit and Sadbh was happy as usual to see her.

Despite feeling under the weather Sadbh had a very good morning and got to spend it playing with her toys.

When it came to trach care she insisted on me giving her a bath and seemed to be very tired. I tried to get her to sleep but she was so giddy we just swaddled her up and got trach care finished.

Sadbh was off form for the rest of the day and did not have much of an appetite.

She did not have much energy either and was happy to watch some of her favorite shows.

Uncle Neil stopped by to give Sadbh her Christmas gift and she was delighted to find two great books after ripping apart the wrapping paper.

Bedtime could not come soon enough for Sadbh and she was out cold in no time at all.

New photos.

Photos from January 3 2012.

Photos from January 3 2013.

All the best,

Wayne, Katie and Sadbh.