Sadbh’s update – April 30th 2013

Sadbh had another really good night however Helen suctioned a number of times throughout the night as Sadbh’s lungs sounded very goopy.

Since we had Sadbh’s appointment in the afternoon, Larissa started her shift at 6am and took over from Helen.

When Katie arrived down a short time later Sadbh was already awake and happily playing with Larissa.

After a big breakfast Sadbh got to play with her new stickers and stamp set that she got from Conor the day before. She wore her trach cap for 50 minutes and despite all the secretions she tolerated it quite well. In fact she was able to cough up her secretions past her vocal cords and into her mouth.

By 10:30 Sadbh was having her bath and getting ready for her nap. Amy read some bedtime stories to her and within twenty minutes Sadbh was fast asleep.

After sleeping for two hours Sadbh woke up in a great mood. She was quite hungry and after a big feed it was time to play while Larissa and Amy got all her equipment ready for the trip to her appointment.

I arrived home to a very happy little girl and she looked so beautiful in the dress that her friend Clodagh gave her. She was excited to see me home earlier than usual and was even more delighted when Katie arrived home not long after.

Sadbh’s appointment with Dr. Inglis did not go exactly how we had hoped. Considering her progress over the past few months he felt that she was not quite where she should be to be decannulated.

He did say that if we decided to remove her trach that she would probably be able to breathe without it but would be more prone to experiencing respiratory issues.

His recommendation was to stay the course as is and to check back in July to see if she has made any further progress.

Our objective between now and then is to get Sadbh wearing her trach cap all day and night without her experiencing any discomfort.

He has noticed that she is improving slowly and that her progress has not yet reached a plateau and as a result he is optimistic that her vocal cords could begin to work eventually. When, we do not know.

During our meeting with Dr. Inglis Sadbh started to get very fussy and needed to have her trach suctioned. Both Katie and I tried to focus on what Dr. Inglis was saying while also trying to clear her airway and keep her calm. It was a very intense moment and by the time we were done we had to ask Dr. Inglis to go over all the details and options again.

Dr. Inglis has been extremely supportive from day one and has never pushed any options on us regardless of how strongly he feels one way or the other. We trust him 100% and know that he has Sadbh’s and our best interests at heart.

Considering that we could make the decision to go trach free sooner rather than later, we decided to stay the course since the negative outweighs the positive.

It was a long drive home with our hopes of a trach free summer squashed. I have to keep reminding myself that in the grand scheme of things that it could always be worse.

A couple of hours before bedtime we gave Sadbh some Albuterol through a nebulizer to help clear out her lungs.

She was so hyper for the rest of the evening and thankfully she had a lot of fun.

We managed trach care while she was awake as she was way too wound up to sleep. Thankfully she allowed us to get it done and soon afterwards she was fast asleep in Katie’s arms.

Nini arrives tonight from Munich and Sadbh will be so excited when she sees her when she wakes up in the morning.

New photos.

Photos from April 30 2011.

Photos from April 30 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 29th 2013

Sadbh had a great night and only needed to be suctioned once shortly after Helen’s shift started. She was in a very deep sleep through the night with her heart rate dipping down into the low 70’s occasionally.

She started her day with a massive coughing fit and she found it very hard to breathe. Katie had a tough time clearing her trach and at one stage Sadbh ended up throwing up due to all the coughing.

It took a while but Katie was eventually able to suction a few thick mucus plugs out of her trach and Sadbh started to breathe a little easier. She still had quite a bit of secretions and needed more suctioning, but it seemed that she was over the worst.
As Sadbh was coughing hard she was desperately trying to tell Katie something. Eventually Katie was able to make out what she was saying, "daddy at work". I suppose she was explaining why I was not there to help out.

Sadbh had a fun morning playing with her kitchen and she kept Amy and Larissa entertained.

The weather wasn’t great so it was a good excuse to stay indoors and for Sadbh to get better.

Around 10:30 she asked for a bath and a nap. She was soon fast asleep but as she was coughing so much Larissa and Amy felt that it would be better to forego trach care in case Sadbh woke up.

By noon she was awake as a result of having her trach suctioned but she did not want to get up. She fell back to sleep an hour later and slept until 2 when the suctioning woke her up.

Twenty minutes later she was back to sleep and slept soundly until 4:15.

She was in a great mood all evening playing with her new baby cot that she received from Cormac and Clodagh.

As I was making dinner she came into the kitchen and asked me to build her a car out of cushions and a blanket so we could go visit Nana and Gerdie.

Sadbh received two really cool birthday gifts from her friend Conor O’Brien. She soon had the wrapping paper torn to shreds and was ecstatic with her new sticker book and ink stamps.

Bath time was a lot of fun this evening as Sadbh brought as many of her bath toys in with her. Katie was squirting water down her back with one of the bath fishes and Sadbh turned around with a huge smile and said “that’s nice”. Thankfully she repeated it again so I was able to capture it on video.

Sadbh did not want to go sleep at bedtime so after trying for 45 minutes we decided to mange trach care while she was awake. She was very cooperative and was very calm as I told her a story.

We received word today that our initial attempt to appeal the decision by the insurance company to cancel our nursing coverage was rejected today. Nevertheless we do have another opportunity to appeal this so Katie and I will be busy getting this appeal written up and submitted as soon as possible.

New photos.

Photos from April 29 2011.

Photos from April 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 28th 2013

Sadbh slept great and did not need to be suctioned all night. I took over from Danielle at 6 and by 6:20 Sadbh was coughing up a storm. I suctioned for almost twenty minutes before her trach started to clear and thankfully Sadbh was smiling the entire time. She did look panicked at one point but overall she was really helpful.

As soon as we were all organized we headed upstairs to bed for a nice long snuggle in bed.

We had a lazy day and Sadbh had a great time playing with her toys. We built a cool fort in the living room and later on Suzie dropped by with a birthday gift for Sadbh.

Sadbh was so excited that she started to rip the wrapping paper off as soon as she gave Suzie a hug and said thank you.

Trach care was easy today as Sadbh was exhausted and had no problems taking her nap. She did not sleep for long though as her coughing got bad and she needed some serious suctioning.

Nevertheless, she was happy to be awake and to be hanging out playing with mommy.

Just before bedtime she Skyped with her cousins in Portland and had all three of them dancing and singing along to her favorite songs.

She had a great day but she was still very goopy and needed a lot of suctioning.

Her next visit with Dr. Inglis is on Tuesday and we believe this new cold has set her back on her progress, as we have not been able to properly cap her trach in almost a week.

New photos.

Photos from April 28 2011.

Photos from April 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 27th 2013

Thankfully Sadbh had a much better night and only needed to be suctioned once. She woke up moments after Danielle left spinning around her cot a bunch of times. She was delighted to see Katie and they both got to snuggle for an hour before getting ready for the day.

We had a busy day of running errands but had to wait for trach care first. She started to get tired shortly after 11 so Katie and I gave her a bath and got ready for trach care.

She really enjoyed her bath but did not want to go to sleep. After a while we decided to press on despite Sadbh being awake.

It was quite stressful at times but she did great and allowed us to get it done.

After we got her dressed we loaded up the car and headed off to buy black out curtains for Sadbh’s room.

University Village was very busy and as we were preparing to leave Sadbh started to point at a blonde woman coming towards us while calling her Nini. Obviously it was not Nini but it turned out to be Amanda, a friend of mine that I had not seen in a few years.

Sadbh finally fell asleep in the car and managed to nap for just over an hour. It was just as well as we feared that we would have a very cranky baby on our hands otherwise.

Katie had a guild meeting to attend to this evening so I stayed home with Sadbh and we both had a fun time. She loves hanging out in our bathroom and pretends to shower while using Katie’s shampoo and conditioner.

Later on we both played hide and seek and Sadbh could not stop laughing her head off. It was great fun and a fantastic way to burn off energy.

For dinner tonight we got take out and Sadbh could not wait to get her hands on some of the fries. When she seen the tomato sauce (ketchup) she insisted on it and started to declare that she was “excited”. The huge grin on her face confirmed her excitement and we eventually had to take the tomato sauce from her before she devoured the entire thing.

Bedtime was much easier than last night and Sadbh was fast asleep within five minutes.

New photos.

Photos from April 27 2011.

Photos from April 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 26th 2013

It seems that Sadbh is over the worst of her cold and thankfully she had a much better night. She slept great and Helen did not have to suction at all.

Both Amy and Larissa worked today and Sadbh was in a very good mood all day.

She was very active and did require quite a bit of suctioning to clear her trach.

After a busy morning it was time for her bath and a nap.

Her trach was still very goopy so Larissa and Amy had to suction another few times.

Since she was somewhat uncomfortable they decided to forego trach care and allowed Sadbh to sleep on without any further interruptions.

She slept for a couple of hours and woke up hungry and ready to play.

After a huge feed she was rearing to go and had both Amy and Larissa chasing her around the house.

She had a wonderful evening and when it came time for bedtime we gave her another bath and got her ready for trach care.

It took over an hour and a half for Sadbh to settle down and when she finally did we were able to start trach care.

She woke up half way through it but she stayed calm and allowed up to finish up without any fuss.

After working hard for three hours Katie was finally able to get Sadbh off to sleep. Poor Katie was exhausted by the time she was done.

I hope she has a good night.

New photos.

Photos from April 26 2011.

Photos from April 26 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 25th 2013

Sadbh had another rough night but thanks to Helen and a couple of doses of Tylenol she slept for most of the night.

The Tylenol helped keep her temperature and heart rate down so she slept relatively comfortable.

Around 5am Sadbh struggled to breathe and started to grab at her trach. Helen responded very quickly and thankfully prevented Sadbh from decannulating herself. She quickly suctioned and removed a huge mucus plug that had completely blocked Sadbh’s trach and airway.

Relieved, Sadbh fell back into a half sleep and Helen breathed a sigh of relief after the stress that she had just dealt with.

Sadbh was wide-awake by 5:30 and looking for Katie. As soon as Katie stepped foot into the room Sadbh’s face lit up and she had a smile from ear to ear.

I had to suction a couple more times but Sadbh still had a lot of secretions working their way up from her lungs.

Both Katie and Sadbh got to spend the morning getting some good snuggles in and after Helen and I left Sadbh seemed to do a much better job of clearing her secretions herself without the need to be suctioned.

Amy and Larissa both worked today and despite Sadbh dealing with her cold she had a fantastic day.

They only needed to suction twice and thankfully her heart rate, respiratory rate and temperature were all close to normal.

At 10am Sadbh asked to go to bed so Amy and Larissa prepared her bath and got everything set up for trach care. She slept through trach care and continued sleeping for two and a half hours.

She was in a great mood when she woke up and did not want to leave her cot.

Sadbh does like her comfort and after a while she picked up her sleep sheep and sang “rock a bye baby” to it. She basically sang the same song that Amy had sang to her earlier on when she was going to sleep.

Later in the day Sadbh, Katie and I headed out for a walk up to Nora’s Woods and Sadbh had to check out the chickens along the way.

We had a great walk but Sadbh sure is getting heavy.

When we arrived home Sadbh came across a colony of ants outside the house. She was fascinated and could not get enough.

By bedtime Sadbh was delirious so it did not take long to get her to sleep.

We gave her some Ibuprofen to help get her heart rate down and after suctioning a couple of times she seemed to be a lot more comfortable.

Hopefully she will have a much better night tonight but we think she is on the mend.

New photos.

Photos from April 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 24th 2013

Sadbh had a rough night and needed constant suctioning from 11 onwards.

Since Helen had very limited experience suctioning Sadbh’s trach Katie gave her a demonstration and unfortunately Sadbh woke up. Sadbh got to snuggle up with Katie for a while until she was ready to go back to sleep.

Helen had to suction on an hourly basis and thankfully Sadbh slept through the whole night.

Her heart rate was much higher than normal as was her respiratory rate. Her temperature was slightly high but well below anything to be worried about.

Larissa started at 7 am and Sadbh woke up not long afterwards.

She was very tired and wanted nothing but cuddles from Katie.

At one stage she said to Katie, “I’m sleepy, close eyes”. Later she said “trach off” as I’m sure she was feeling very uncomfortable. Katie explained that she would need to keep her trach on and that she would soon feel better.

She gave her some Tylenol and soon Sadbh was feeling a lot more comfortable.

She had a nice relaxing morning and even got to go out for a stroll through the neighborhood.

When she arrived home she asked for trach care and bed but she did not want a bath.

Trach care went well until Amy started to secure Sadbh’s new trach ties. Sadbh decided that it was a good time to wake up but thankfully Larissa and Amy were able to finish off Trach care.

Amy read Sadbh a few of her favorite books and after 45 minutes Sadbh was back in a deep sleep for two and a half hours.

She woke up to find Katie sitting with her and she was delighted with herself. She was so happy to see Katie.

I arrived home not long afterwards and poor Sadbh looked so exhausted and congested. Despite this she was in a great mood and was very happy.

She was still quite goopy throughout the evening and needed to be suctioned a number of times.

Her temperature started to rise just before bedtime so we gave her some grape flavored Tylenol and she couldn’t get enough. She wanted more but settled for water and her binky.

After brushing her teeth and a cuddle with mommy Sadbh was soon drifting off to sleep and her heart rate was starting to come down thanks to the Tylenol.

Katie had contacted the insurance company yesterday to discuss their plans to scale back and terminate our home nursing care. They explained that we would need to appeal the decision through Sadbh’s pediatrician.

Thankfully when we talked with Sadbh’s ENT doctor, Dr. Inglis, last week he agreed that we require a minimum of 16 hours nursing care per day and he wrote a very strong letter to support his argument.

Katie delivered this letter to Sadbh’s pediatrician this evening.  Dr. Hathaway is also committed to appealing this decision by the insurance company.

She has a week to initiate the appeal so hopefully she will be able to help us resolve this issue quickly.

New photos.

Photos from April 24 2011.

Photos from April 24 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 23rd 2013

Sadbh did a little better last night with her trach cap and tolerated 45 minutes. She was extremely restless so Helen replaced the cap for her guard and Sadbh instantly fell into a deep sleep for the rest of the night.

Katie left for work early this morning after Larissa arrived and when Sadbh woke up at 7:30 she was in a great mood.

She missed Katie but was very happy to see Larissa.

Amy arrived at 8 just as Sadbh was getting ready for breakfast. 

After a big feed it was time to play with her play-dough for a while and when she grew bored of that it was time to play with her sticker book.  

It was another sunny day so Sadbh, Amy and Larissa loaded up the stroller and headed out for a walk to the park.

Sadbh really enjoyed her time at the park and even got to go down the slide a bunch of times.

She was getting tired by the time they arrived home so it was a good opportunity to take a bath and get ready for trach care.

Thankfully she fell asleep and Larissa and Amy were able to manage trach care.

She woke up a short while after completing trach care but wanted to relax in her cot for the next hour and a half.

She was in a great mood and very happy to hang out.

Ali-Baba stopped by just as Sadbh was getting up and after lunch they headed out with Amy to draw pictures with chalk on the driveway.

Sadbh loved all the different colors and was very proud of the end result.

I arrived home not long after while Sadbh was busy in the garden checking on the sweet peas that she planted with Nana and Granddad last week.

After Ali-Baba and Amy left I packed up her stroller and both of us headed out for a walk in the sunshine to Nora’s wood and up to Madrona.

We took our time and checked out a couple of dogs that barked like crazy at Sadbh. They were being playful but thankfully they were safe behind a fence since they were much larger than Sadbh.

All of a sudden we could hear chickens clucking away across the street so we headed over to investigate. Sadbh could not believe her eyes when we came upon a chicken coup.

We had a wonderful walk and both of us were tired by the time we arrived home.

Katie arrived home a while later and we all got to Skype with my sister in New Zealand. We got to watch our week old niece, Zoe, take a bath. We even got to see her umbilical cord fall off. That was interesting.

Zoe’s brothers showed off their fire fighter helmets and Sadbh was impressed.

It was soon time to go to bed and Sadbh was exhausted and thankfully did not take long for her to fall to sleep.

New photos.

Photos from April 23 2011.

Photos from April 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 22nd 2013

Sadbh slept well but would not tolerate her trach cap. She slept until after 7:45 and woke up very happy to see Katie.

It was a busy morning for Sadbh as she had an appointment with Dr. Cavanaugh, her cranial sacral specialist. The meeting went well however at first, Sadbh was resistant.  After a little while, Katie let her watch Kipper on her phone and the rest of the visit went well.

After that visit they all headed off for a quick visit with Dr. Herron to pick up a homeopathic remedy of Opium.

When Katie dropped Sadbh, Larissa and Amy off at home, Sadbh was very upset that she was not staying with them.

Amy and Larissa reacted quickly and took Sadbh off for a walk to the park at Seattle University in the hope of distracting her.

She ended up having a great time especially when they blew bubbles.

Ali-Baba was at the house when they arrived home and Sadbh was very happy. After playing for almost an hour it was time for her bath and trach care. The bath went well and Sadbh enjoyed splashing in her tub. It was a different story when it came time for her nap, as she was too excited to sleep. She was very giddy and had no intention in going to sleep.

Ali-Baba, Larissa and Amy eventually abandoned any hope of managing trach care and Sadbh was free to play to her hearts content.

I arrived home to a delirious but very happy little girl. She was slow to give me any attention but was full of energy and fun.

Later on we had a game of hide and seek and soon the two of us were rolling around the living room floor laughing our heads off.

Sadbh was thrilled to see Katie arrive home and gave her a big hug as soon as she walked in the door.

Despite being very tired she was still full of beans when it came time for bed. 

It took a while for her to settle down but as soon as she drifted off her heart rate dropped down to a very relaxed level.

Katie and I managed trach care without any problems and soon Sadbh was comfortable in her cot.

New photos.

Photos from April 22 2011.

Photos from April 22 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 21st 2013

We were all pooped by the end of the day and Sadbh was off to sleep in Katie’s arms in no time at all.

Danielle worked throughout the night and mentioned when I took over at 6am that Sadbh hardly moved all night.

She was in a very deep sleep and finally woke up with a huge smile shortly before 8am.

Just then a plane fly overhead and Sadbh said “Nana fly”.

We both headed upstairs to Katie after unhooking all her equipment. She was over the moon to see Katie and got stuck into some serious cuddles.

Later on Sadbh got to Skype with Nana and Granddad and could not stop blowing kisses to them. Nana had found one of the hats that Sadbh had planted in her suitcase and Sadbh was happy to see Nana wear it.

We had originally planned on going to the zoo but it turned out to be a wet day so we headed over to see Clodagh and Cormac for a play date instead.

Sadbh was so excited that she could not stop talking about them the whole way in the car.

Ixchel was also there on a play date and for the next hour or so Sadbh and her friends had a wonderful time.

They helped Suzie bake cookies and later when the sugar kicked in they all had a fun time dancing.

The weather was still nasty so we headed home in the hope that Sadbh would nap for trach care.

After a nice warm bath and a cuddle with Katie, Sadbh soon dropped off to the land of nod.

Trach care went exactly according to plan for the first time in ages and Sadbh slept right through it. We noticed that her neck was very tender in one area so we applied some medical tape to give it relief from the trach ties and to speed up the healing.

Sadbh slept for two hours and woke up in a fantastic mood.

We spent the rest of the evening getting dinner ready and preparing for the week. Sadbh had a lot of fun playing and watching the videos of her dancing yesterday.

When it came time for bed Sadbh was extremely giddy and insisted on reading a whole bunch of her favorite books.

It took ages to finally get her to sleep

New photos

Photos from April 21 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 20th 2013

Sadbh slept right through the night. My parents popped in to say goodbye just before 4am and even though she was sound asleep it was a very sad farewell. Even Danielle, Sadbh’s nurse, shared the emotion.

Sadbh slept until 7:45 and as soon as she woke up Katie brought her upstairs to bed.

It was the first time in a long time that it was just the three of us in the house and it seemed like we were missing something. This feeling followed us throughout the entire day and every time a plane flew by Sadbh would wave and say “good bye Granddad, good bye Nana”.

After a quick breakfast we headed downtown for a spot of shopping and Sadbh had a great time.

In one particular store she could not stop trying on hats while dancing to the music. She was very entertaining to everyone in the store.

She was getting tired by the time we arrived home so we gave her a nice warm bath and got her ready for trach care. Unfortunately she did not want to go to sleep so after a while both Katie and I decided to manage trach care while she was awake. She did really well and we were successful in getting everything completed.

We finally got Sadbh off to sleep by going for a drive in the car and as soon as we were under way she was out cold.

It was a very quiet day overall and you could tell that Sadbh was sad due to absence of Nana and Gerdie.

I’ve said it before and I’ll say it again, Sadbh has to be one of the luckiest people around to have such amazing grandparents. They gave up another six months of their lives to help take care of Sadbh. We are going to miss them something fierce.

New photos.

Photos from April 20 2011.

Photos from April 20 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 19th 2013

Sadbh slept like a log until 8am this morning. Katie had an early start to the day so she did not get a chance to see Sadbh before she left.

Amy arrived just as Sadbh was getting ready for breakfast. Unfortunately Larissa was sick so she could not work.

Nevertheless, Sadbh had plenty of people fussing over her and nonstop people to play with.

Just before noon Sadbh was showing signs of getting very tired so Amy and I prepared her bath and got her ready for trach care. She enjoyed her bath and as soon as I got her ready to sleep she got very playful and had no desire to go to sleep.

She insisted on being placed in her cot and for the next two hours she played around and refused to go to sleep.

In the hope that she might soon tire herself out I left the room and watched her closely on her video monitor. She got into everything and despite the fact that she was delirious she would not slow down.

Every so often she would turn the camera upside down or would throw something over it so I could not see her and of course I would have to go in to check on her and clean everything up.

During one such occurrence when she covered the camera I was just heading into her room when the rubbish truck pulled up outside, with it’s loud engine I could hear Sadbh call out and then a thud.

I opened her door only to bump right into her. It turns out that the rubbish truck frightened the hell out of her so she jumped out of her cot and ran straight for the bedroom door. I was shocked that Sadbh was able to get out of her cot as she has never tried this before.

Nana and Granddad arrived home shortly afterwards so we decided to manage trach care while she was awake. I held as Amy cleaned and Sadbh did really well until it came time to secure her trach ties.

The whole process was taking a little longer than usual since I was training Amy and it seems that Sadbh’s neck was tender. We quickly finished up and Sadbh was able to relax.

The rest of her evening was spent helping Nana and Granddad pack their suitcases and she had so much fun playing with their luggage. We actually think that my parents were trying to pack Sadbh away to bring her home to Cork.

Bedtime was sad as Nana and Granddad said good-bye to Sadbh before she went off to sleep. As Sadbh was getting her PJs on, she looked at Nana and said “Nana fly”.  We think she really understands that they are getting on an airplane tomorrow. 

They leave so early tomorrow morning that Sadbh will still be fast asleep when their flight takes off.

She was very generous with her hugs and kisses and there wasn’t a dry eye in the house.

New photos.

Photos from April 19 2011.

Photos from April 19 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 18th 2013

Sadbh refused to wear her trach cap during the night but other than that she slept great and did not wake until 7:20.

Granddad took over from Helen at 6 and Sadbh was in a great mood when she woke up.

The weather was not great today so Sadbh spent the morning playing with Larissa and Amy. She looked quite tired much earlier than usual so we started her trach care ritual at 11 however she had no desire to go to sleep. Amy worked hard to get her to sleep and after 45 minutes we decided to manage trach care while she was awake.

Thankfully she was happy with that idea and was glued to her iPad and Kipper.

Everything went well and afterwards we hoped that she would drop off to sleep but Sadbh had no desire to sleep. She fought it for almost two hours and eventually she headed out for a walk with Amy and Larissa. This unfortunately did not work either, as they had to make a quick retreat when it started to rain.

It was a very long evening for Sadbh and she showed no sign of slowing down.

Clodagh, Cormac and their parents came by for dinner and Sadbh was beside herself with excitement. She could not believe her luck and had a fantastic evening playing with her friends.

I have no idea where she got all the energy but she was still going strong well after her bedtime. It was 9:30 by the time she finally got to bed and thankfully she dropped off to sleep quite easily.

Helen is working again tonight so hopefully she will have more success capping Sadbh’s trach tonight than she did last night.

Katie received a call from the nursing agency first thing this morning and they informed her that our insurance company was scaling back our nursing coverage from 16 hours to 8 hours per day, retroactive from April 1^st. Our current 8 hours of daily coverage would then end on May 31^st.

Thankfully Sadbh’s pediatrician called me back today and will support our appeal to retain our current nursing coverage and we are waiting for Dr. Inglis to get back to us with any support that he can offer.

It’s sad that the insurance company can make such a drastic change to our coverage without any notice or even time for us to react accordingly.

We are hoping that Dr. Inglis gets back to us quickly so we can strategize on our appeal effort.

New photos.

Photos from April 18 2011.

Photos from April 18 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 17th 2013

Helen was able to cap Sadbh’s trach for almost an hour and a half last night and after Sadbh pulled the cap off she dropped back into a deep sleep for the rest of the night.

I took over from Helen at 6 and Sadbh slept soundly until 7:15. She woke up in a great mood but wanted to lounge in bed for another twenty minutes or so.

She had her two-year check up with Dr. Hathaway today and Sadbh was very excited to go. Larissa was getting Sadbh ready as I was loading up the car and Sadbh explained that they were going to the doctor. She said, “not trach, other doctor”.

The visit went well and we learned that Sadbh had grown 3 inches since her last visit in January. She now measures at 36 inches tall and 26 pounds 9.6 ounces. Her weight has her at 50 percentile while her height has her at 92 percentile.

Dr. Hathaway was very impressed with her development, especially her speech development.

She was in a fantastic mood until the nurse came back in with a vaccine shot for viral hepatitis. Sadbh got very upset but we were soon able to calm her down with a bunch of distractions.

Her good mood did not last long as she got extremely upset when we said good-bye to Katie in the car park. She cried most of the way home and was inconsolable, that was until we told her that she was getting ice cream when we got home for being such a brave girl at the doctors office.

This did the trick and Sadbh could not wait to get her hands on the bowl of ice cream that I was preparing in the kitchen.

She devoured it and ended up with ice cream all over her face.

Later today Sadbh received a wonderful birthday gift from her friend Saoirse back in Ireland. It was a really cool indoor croquet game with farm animals. Sadbh was delighted with herself and had a great time learning how to play.

When it came time for trach care Sadbh insisted on me putting her to sleep. It was a ploy, as she had no intention on going to sleep whatsoever. She pushed every button that she could for almost an hour before I finally gave up. Amy then tried but was also unsuccessful.

Since she had not slept all day she was quite wrecked when it came time for bed. Katie and I managed trach care as soon as she was out and thankfully everything went well.

With my parents scheduled to leave this weekend we are finally feeling good about our nursing coverage and also with Sadbh’s nanny, Amy.

Murphy’s law never fails to interject when we think things are going well. Katie received a call from Sadbh’s doctor this evening letting us know that our insurance company is going to scale back on our nursing coverage since they feel that Sadbh no longer requires the current 16 hours a day.

Thankfully I’m off work for the next couple of days so I can try to work this out.

New photos.

Photos from April 17 2011.

Photos from April 17 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 16th 2013

Sadbh slept very well last night and woke up to Gerdie in a great mood. She was very playful from the start and was teasing Gerdie for a while before finally getting up.

Amy was not quite 100% better today so she took another sick day to make sure that Sadbh stayed healthy. Larissa was working and Sadbh was very happy to see her arrive.

It was another busy morning and Sadbh was very happy playing with her school buses in her room.

Unfortunately, she had a little accident with one of her buses and ended up with a bump next to her right eye. She was very upset but soon calmed down when she realized that it was not serious.

Ali-Baba stopped by later on and Sadbh was delighted when she stepped foot inside the door.

It was a beautiful day so Sadbh, Granddad, Nana, Ali-Baba and Larissa all headed out for a walk to the Seattle University campus.

They had a great walk and Sadbh really enjoyed being outside.

When she arrived home I got her bath ready while Larissa set up for trach care. Sadbh enjoyed her bath but when it came time for Larissa to dry her off and get her to sleep Sadbh was not happy. She threw a huge fit and got very upset.

I eventually took over and soon Sadbh was fast asleep in my arms.

Larissa cleaned Sadbh’s neck and area around the trach while I held. She did great and Sadbh slept right through the whole routine. She slept for two hours and was a little upset when she woke up.

It had rained while Sadbh was sleeping so as soon as her belly was full Granddad and Nana brought her out for another walk through the neighborhood. She had so much fun and when they arrived back she planted some sweet peas in the garden.

Just as we were putting Sadbh to bed we received news that her new cousin was born in New Zealand. Sadbh’s aunt Trish, my sister, gave birth to a healthy baby girl and Sadbh got to join in on the celebration. I cannot wait for us to meet our new niece.

New photos.

Photos from April 16 2011.

Photos from April 16 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 15th 2013

Sadbh slept like a log and woke up well rested shortly after 7am. Granddad Gerdie had taken over from Helen at 6 and Sadbh was delighted to see him.

They had a fun morning and Sadbh was thrilled when Larissa arrived at 8:30. Sadbh was having her breakfast and as soon as Larissa stepped foot in the door Sadbh called to her to come and sit next to her.

Unfortunately, Amy was sick today and could not come to work. Nevertheless, Sadbh had a fantastic day playing with Larissa, Nana and Granddad. Sadbh has really only known Larissa during the night and more often than not she has slept right through Larissa’s shifts.

When it came time for trach care Sadbh was ready for her nap. She had a lovely bath first and as soon as she was dried off she insisted on Granddad putting her to sleep.

I managed trach care with Larissa to show her our routine and everything went according to plan.

Larissa has managed trach care plenty of times in the past but never with Sadbh. It was a great opportunity for Larissa to go over the process that we have established and she got it right from the start.

Sadbh slept for two hours and woke up in a fantastic mood. She had a big dinner and got to catch up on Kipper.

It was soon time for Larissa to go home and after peeling Sadbh away from the telly she bade her farewell.

As soon as she was done eating it was time to head out into the sunshine for a nice long walk.

Nana noticed that the electric company had set up the electricity poles that had been lying on the street over the past few months. Sadbh used to really enjoy walking along those poles and was surprised to see them standing so high in the air instead of lying on the grass.

Before bedtime Sadbh got to Skype with her aunt Trish and cousin Josh in New Zealand. Sadbh was very playful and kept showing off her new kittens.

Bedtime was easy tonight and Sadbh was fast asleep within half an hour.

New photos.

Photos from April 15 2011.

Photos from April 15 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 14th 2013

Sadbh slept really well last night and slept on until 7 even after Gerdie took over from the nurse at 6.

She was in a fantastic mood when she finally woke up and was delighted to see Granddad sitting in the chair beside her.

Sadbh had a huge breakfast and after her belly was full it was time to get stuck into some serious fun.

Shortly after noon we decided to get her ready for trach care and were very surprised when she fell into a deep sleep without any fuss.

Trach care was very easy today and Sadbh woke up just as we finished up. Katie was digging for gold in Sadbh’s nose while I was helping try to find it with the flashlight and unfortunately it disturbed her enough to wake her up.

That ended up working out fine as we were able to pack everything up and head out for the afternoon.

The issue with having a trach is that our day does not start until after trach care has been carried out. More often than not we cannot head out until after two or three in the afternoon.

We headed over to Ali-Baba and Kirk’s for another birthday celebration for Sadbh. Sadbh was talking non-stop about how excited she was to be going over to see Ali-Baba but as soon as she arrived she was extremely shy. It took a few minutes for Sadbh to warm up and soon she was hanging out with Ali-Baba opening her presents and having a wonderful time.

After cake and singing a birthday song we all headed down to the Ballard Locks for a walk. Sadbh was delighted to see all the boats going through the locks and was even more excited to see the water cascading down over the weir. 

It was a beautiful evening and by the time we were on the way home Sadbh was yawning her head off. She still had a good few hours in her yet and spent the next couple of hours playing with Katie and I.

When it came time for bed Sadbh was fast asleep in minutes.

Helen is working tonight and Larissa is starting her day shift tomorrow morning.

New photos.

Photos from April 14 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 13th 2013

Sadbh slept great and work up shortly after 7 with a huge smile on her face. As soon as I had all her equipment unhooked she was in bed snuggled up with Katie.

It had been a very windy night but thankfully Sadbh slept through all the noise and managed to stay tangle free.

We had a very busy morning since we had package everything up, give the house a quick cleaning and hit the road by 10.

Sadbh was in a great mood and was extremely playful.

We had hoped to manage trach care just before hitting the road however we ran out of time so we decided to do it when we arrived back in Seattle.

Despite the long drive Sadbh stayed awake the whole way home. She even asked to sit on my lap so she could drive a few times. Thankfully she was in a very good mood and rarely ever got fussy.

By the time we arrived home Sadbh was exhausted. She got stuck into her toys for a while as we unloaded the cars and got everything stored away.

When it came time for trach care she had fallen into such a deep sleep that she kept setting off her low heart rate monitor.

Her trach change was scheduled for this weekend but we had planned on changing it out tomorrow. Just as we were finishing up trach care this evening we made a last minute decision to change out her trach and thankfully everything went well. Sadbh woke up for a moment when I placed the new trach in her neck but she quickly dropped back to sleep. This was short lived a few moments later when she woke up and got very upset. We worked hard to calm her down and to get her trach ties secured. As soon as we finished up she finally calmed down and got to snuggle with Katie for a while.

We had video recorded the trach change but unfortunately I accidentally deleted the file when copying it over to my computer.

Sadbh had a fun evening and when it came time for bed she was out in no time.  Gerdie put her to sleep since Katie and I took Cammy to the airport for her return flight to Palo Alto.

It will be strange not sleeping with Sadbh in the room tonight since we are back to having night nurses. Hopefully Sadbh will sleep right through the night.

New photos.

Photos from April 13 2011.

Photos from April 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 12th 2013

Sadbh had yet another beautiful night and woke up shortly after 7 in the greatest mood. Apart from the sound of her air compressor running the house is completely silent and we all have been able to sleep soundly without the usual sounds of living in the city.

Katie and I occasionally check on Sadbh during the night to ensure that she is not getting tangled up in her cords.

Sadbh had a very lazy but fun day. After breakfast she got stuck into a few of her new books and enjoyed being read to by Cammy.

Later on she even got to paint with Nana and she was very careful not to make a big mess.

When it came time for trach care Sadbh was looking tired and called out to Katie to start trach care. We were all surprised but we soon realized that she only really wanted to watch Kipper.

Trach care went well considering that she was awake throughout but we were disappointed that she did not want to take a nap even though she was clearly exhausted.

After another round of playing in the living room Granddad and Nana convinced Sadbh to go for a walk with them. Ten minutes later she was fast asleep in Granddad’s arms and as soon as she was out he placed her in the stroller for a more comfortable sleep.

Sadbh was in a great mood when she arrived home and was full of energy. It was time for dinner and as soon as she was done she wanted some birthday cake.

I cut off an appropriate slice for her but she refused that and wanted the rest of the cake for herself. She loved it and was soon covered in frosting. I’m sure she was buzzing with all the sugar also.

After dinner she could see the moon about to disappear behind the hills so she waved and bade it good night.

She still had a lot of energy when it came time for bed but was soon fast asleep cuddled up in her cot.

New photos.

Photos from April 12 2011.

Photos from April 12 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 11th 2013

Sadbh slept right through the night until 7am. She did get slightly tangled up in her oximeter cord but thankfully it was slacked up enough not to get wrapped around her neck.

She was in a fantastic mood when she woke up and wanted to cuddle up with Katie as soon as she could.

All of a sudden Sadbh got very irritated and had a fierce tantrum. I could not console her and she kept lashing out when she did not get her way. She managed to push all of my buttons and it became a game of determination between two very stubborn people. I don’t think there were any clear winners but we both learned a lot.

After breakfast we all headed outside to fly a kite in the windy garden. Sadbh had a great time and even got to hold the lines as the kite flew high in the air. She did great until she lost interest and then moved on to the next fun thing.

After a fun packed morning Sadbh started to show signs of getting tired so we ran her a bath and got her ready for trach care. She loved playing in the water and did not want to leave. She finally got worried when the water started to flow down the drain but was relieved when I reassured her that she was safe.

She had no interest in going to sleep and had way too much fun playing with Katie on the bed. After trying for ages we finally decided to manage trach care while she was awake and this worked out well until she decided she was done and tried to wiggle her way out. Thankfully we had a good grip on her so her trach was secure. Katie calmed her down and was able to finish up trach care and get her trach ties secured.

Afterwards we headed off to Lake Chelan and Manson for a drive and Sadbh finally dropped off to sleep. She slept for almost an hour and a half and woke up just as we pulled up to winery that we had decided to visit for dinner.

She was in an excellent mood throughout the rest of the evening and got busy playing with her Lego blocks just before bedtime. She usually likes to demolish things so it was great to see her building for a change.

Bedtime was a fun ordeal as Sadbh was very playful. It started off when I accidentally dropped an F-bomb and Sadbh started to repeat it saying “No F%&@ing” over and over for the next ten minutes. It was quite funny even though Katie and I had to work hard to remain serious. Another valuable lesson learned today.

New photos.

Photos from April 11 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 10th 2013

Thankfully Sadbh slept great and did not get tangled up in her oximeter cord. She slept until after 7 and was delighted when Katie brought her into bed with us for a cuddle.

After wishing her a happy birthday she opened the first of her presents, which was a bicycle helmet. She was delighted and immediately started to ask for a bike.

The excitement continued when we headed out to the living room and she got to open a few more presents after Nana, Granddad and Poppy arrived on the scene.

She did not know which way was up or which one of her new toys she should play with first.

After breakfast we headed off to a nice park along side the river and Sadbh enjoyed walking along the trails. Granddad spotted a salmon swimming up the creek and Sadbh was eager to see if she could see one too.

Eventually the weather changed for the worse so we all headed back to the car to get out of the rain.

During her trip out she received a call from her uncle Ger to wish her a happy birthday. Sadbh shares the same birthday as her uncle so she was able to wish him a happy birthday also.

Sadbh was getting very tired by the time we arrived home so Katie gave her a bath while I got everything set up for trach care. Katie tried hard to get Sadbh to sleep but after a while we decided to manage it while she was awake.

With Granddad holding the iPad so Sadbh could watch Kipper, Katie and I were able to get it done without any issues. She really loves that cartoon, Kipper.

Katie’s aunt, Cammy, arrived from Palo Alto to join us in celebrating Sadbh’s second birthday and Sadbh was excited to see her. She was shy at first but was soon holding her hand as we walked down the street.

It was very windy out and Sadbh loved the feeling of the wind in her face. She also discovered my shadow and had a great time chasing after it.

We had hoped that Sadbh would sleep in her stroller but she was having way too much fun to be worried about getting any sleep.

By now Sadbh was turning into a very cranky little girl so we bundled her into the car and headed into town in the hopes that she would fall asleep. It worked and Sadbh slept for a little over an hour. It was just enough time for us to pick up her birthday cake and do the shopping for dinner.

Sadbh woke up just as we pulled up back at the house so Katie and I ran in to set up her balloons and the rest of her presents while Granddad and Nana looked after her in the car.

She was fascinated with all the balloons and as soon as she saw her cake she could not wait to taste it.

After we all sang “Happy Birthday” to Sadbh she quickly blew out her candles and got stuck in. It was a lovely cake but very sweet. Sadbh did not mind and ate as much of the frosting as she could. When she was done she decided it would be fun to ply me with as much frosting as she could stick into my mouth.

Afterwards she Skyped with Nini, Kati, Anna and their mother Karina who are on their holidays in NYC and Sadbh was quick to show off her three yellow school buses.  She then got to Skype with Ali-baba in Seattle and she was so excited to see her.

Just before bedtime she came running out to the kitchen in her birthday suit to kiss everyone good night. She was so happy and free and you could tell that she was having a lot of fun.

Both Katie and I cannot believe how quickly the last two years have gone by and we count our lucky stars that we have such an amazing and wonderful daughter. We obviously hoped that Sadbh would be trach free by now but we also understand that our situation could be a lot more difficult and despite everything we have it exceptionally good.

Our situation has brought our family together in ways that we could not have imagined and we are so fortunate to have such incredible people in our lives.

New photos.

Photos from April 10 2011.

Photos from April 10 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 9th 2013

Sadbh had a fantastic night and she slept in her own bed straight through.  Katie woke up several times to check on her since she was so quiet.  One of the times Katie checked, she noticed that the oximeter cord was wrapped around Sadbh’s neck twice.  Katie got quite the fright and she quickly untangled and rearranged the cord so that it wouldn’t do it again. 

When Sadbh finally woke up around 7am, I checked on her and found that the cord was again wrapped around her neck.  I came up with a plan to prevent that from happening tonight by securing the cord closely to the cot.

Sadbh had an active morning.  She played with her play dough and Gerdie and Nana made all sorts of fun animal shapes for her.  She showed signs of being very tired quite early so Katie lay down with her and tried to get her to sleep so they could manage trach care.  Sadbh was very tired, but she had no intention of going to sleep.  After a while, Katie gave up and we decided to do trach care with Sadbh being awake.  Sadbh was a champ and let us take her ties off; clean, dry and powder her neck; and put the polymem and ties back on.  Gerdie held the iPad up in the air and Sadbh watched Kipper as we cleaned. 

Afterwards, Sadbh had a snack and then headed out for a nice, long walk with Gerdie and Nana.   She was fast asleep in no time and she slept for an hour and a half.

Meanwhile, Katie and I headed into the local bakery to order Sadbh’s birthday cake and then to the shops to buy party supplies.  Sadbh, Gerdie and Nana arrived home a bit later and Sadbh was in a great mood all evening.

We are pretty sure she knows its her birthday tomorrow and we sang her an early Happy Birthday song just before she went to sleep.  Hopefully she will sleep well again tonight and have happy dreams of turning two.

New photos.

Photos from April 9 2012.

All the best,

Wayne, Katie and Sadbh.