Sadbh’s update – July 31st, 2012

Sadbh slept like a log again last night and did not move once. Her heart rate and blood oxygen level were stable and at a perfect rate throughout the night.

She woke up at 6:45 and was ready for breakfast.

Destiny started her shift at 7am this morning, since Sadbh’s appointment was at 3pm with Dr. Inglis.

Sadbh was delighted to see Destiny and as soon as breakfast was over, it was time for the fun to start.

Sadbh, Nini and Destiny headed out for a long walk early in the morning and Sadbh wore her Passy Muir Valve for over an hour. During her walk, they came across a football match and Sadbh was really impressed. She could not stop running up and down the sidelines of the pitch, all while wearing her PMV.

It was very impressive and she even caught the attention of a few of the players.

They gave her a soccer ball to play with, however Sadbh was determined to get the ball that was in the goal net.

Eventually they all headed home since Sadbh was getting tired.

It was time for trach care and Sadbh slept for an hour.

For some reason, Sadbh was very sad when she woke up and neither Nini nor Destiny could cheer her up.

Realizing that Sadbh probably needed more sleep, Nini cuddled her and rocked her back to sleep.

Unfortunately, the painters knocked on the door of the house, waking Sadbh up, so Nini had to work harder to get her back to sleep.

It did the trick and Sadbh slept for almost an hour and when she woke up this time she was in a much better mood.

I arrived home from work shortly afterwards and was greeted by a very excited and happy little girl.

Nini and Destiny had all her equipment packed up and ready to be loaded into the car.

Moments later, Katie arrived home so we loaded everything up, said good bye to Destiny and we headed off to Children’s Hospital for her appointment with Dr. Inglis.

Check in was a lot quicker than usual and before we knew it, Dr. Inglis and his team arrived in our room.

Sadbh was in a very happy mood and tolerated the PMV without any difficulty. She was quite shy and did not make too many sounds at first, however Dr. Inglis was impressed and wanted to cap her trach to see how she dealt with breathing 100% through her nose and mouth.

It didn’t take long before she started to struggle, so we removed the cap and replaced it with the PMV.

Next, it was time for Dr. Inglis to run a flexscope down through Sadbh’s nasal passage and down as far as her vocal cords to see how they were working.

Sadbh still had the PMV on and immediately got very irritated. She was pissed, and struggled hard to get the flexscope out. She succeeded at first, however, Dr. Inglis managed to get it back in and down to where he needed it to be.

Sadbh was bawling her eyes out and her cries brought tears to everyone in the room’s eyes. It was both heartbreaking and heartwarming at the same time.

Just after a minute of discomfort, Dr. Inglis removed the flexscope and Sadbh quickly cuddled into Katie’s arms for comfort.

Thankfully it did not take long before she was happy and full of smiles again.

After being pressed by Katie, Dr. Inglis did admit that he believed that there was slight improvement in her vocal cords, but he was cautious to get too excited without further testing.

While looking at her vocal cords, he did see some slight movement, however, since Sadbh was so agitated, it was very difficult to see how much improvement since it is very common for the vocal cords to shut tight when one is in distress and tensed up.

Dr. Inglis also mentioned that when someone with a trach starts to breath through their mouth and nose, the sensation can cause distress resulting in the person refusing to wear the PMV and going back to breathing through the trach.

Our next steps are to keep using the PMV as much as possible throughout the day, to get Sadbh used to it and to return to Dr. Inglis on August 22^nd for bronchoscopy and another shot of Botox.

While it was not the news we had hoped for, it was certainly the news that we were prepared for and so our wait continues.  We will keep on keeping on.

We left Dr. Inglis’s office with heavy hearts and a sense of serious disappointment, however we have gotten through 15 months of this and we are prepared for as many more as is needed.

New photos.

Photos from July 31 2011.

All the best and thank you all for the best wishes!

Wayne, Katie and Sadbh.

Sadbh’s update – July 30th, 2012

Larissa was working last night and Sadbh had a great night sleep.

She slept right through and did not wake until 6:20.

Katie made her tasty pancakes for breakfast and Sadbh devoured them.

Nadia was working and Sadbh was delighted.

Sadbh always has fun with Nadia and loves to learn new things.

Trach care went well today and Sadbh slept for almost two hours afterwards.

She was in a great mood when she woke up, so Nini and Nadia tried out the Passy Muir Valve.

Sadbh did great and kept making loud sounds for over an hour.

Later in the evening she plopped herself into the armchair in the living room and could not get enough of the Cat in the Hat book that she got for birthday from her cousin Kevin back in Cork.

Tomorrow afternoon, Sadbh has her appointment with Dr. Inglis and we are hoping that he might have some promising news to share with us after hearing how well she manages with the Passy Muir Valve and after looking down her nose to see how her vocal cords are functioning.

New photos.

Photos from July 30 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 29th, 2012

Sadbh slept great and did not budge until shortly after 5am. She settled back down very quickly and slept for another hour.

She was so full of love when she joined us in bed and she could not stop cuddling and kissing us both.  She was even kissing my ear, my eye and was so affectionate it melted our hearts.

Eventually it was time to head downstairs and she got to have breakfast with her cousins.  She continued to be lovey-dovey with them and played the “Hugging Game” where she went around and around reaching her arms out and hugging each one.  Hayato, Kaito and LuLu loved it too. Everyone was impressed that Sadbh knew who they were by name and that she wanted to give them some love.

She also showed off her Baby Signing Times DVD and taught the others a bunch of baby signs.

After they were done eating, it was time to get busying playing with Sadbh’s toys.

All the kids loved Sadbh’s red wagon and they each took turns going for spins around the house.

Eventually it was time for Kristi and the kids to head home to Portland, so Sadbh gave them all a kiss and said good-bye.

The timing worked out well as Sadbh was starting to get ready for her morning nap.

Katie and I started the trach care process and as soon as Sadbh was done with her bath, she was off to sleep in no time.

She slept for almost two hours after trach care and she had a huge appetite when she woke up.

It was another beautiful day so Sadbh got to try out using her Passy Muir Valve out in the garden. She had a great time and got to eat some fresh strawberries and tomatoes from the garden.

She made so many sounds and tolerated the PMV for almost an hour before it started to irritate her.

As soon as she was done, we all headed out up to Capitol Hill for a walk and for dinner.

Sadbh was mad flirting as usual.

She had so much energy in the restaurant; I thought she was going to jump right out of her high chair.

At one point she was fascinated with leaning back and looking up at the ceiling. Once we looked up we could see why, she was checking out her reflection in the glass ceiling. She is one serious diva.

Sadbh had another great day and was full of smiles and kisses all day.

New photos.

Photos from July 29 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 28th, 2012

Audrey was working again last night and when I came down at 5:45 to take over, Sadbh was sitting on her lap watching some Baby Signing Time on her laptop.

She was so full of beans and we spent the morning chasing her around the house. She is now walking without any help and is very keen to explore the entire house. It was an exhausting morning trying to keep up with her and it is definitely time to start baby proofing everything.

Sadbh was in for a treat today, her cousins from Portland came by and she got to spend the whole day playing with them.

The sun came out just around the same time as they arrived so we all headed out on the boat for a few hours.

Sadbh and the kids had a fantastic time and her cousins even got to get towed behind the boat.

Sadbh had a wonderful day and was in a deep sleep by the time we arrived home.

New photos.

Photos from July 28 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 27th, 2012

Sadbh had a wonderful night sleep and did not wake until around 5:45. She did not realize that Audrey was working and was so excited when she saw her.

Sadbh and Audrey got some good playtime in before the end of Audrey’s shift.

Sadbh was a little cranky for the rest of the morning, and she did not have her normal appetite. Nevertheless, she spent the morning playing with Nini and by 10:30 she was tired and ready for her nap.

Trach care was very straightforward and Sadbh got to sleep for a while afterwards.

After lunch, Sadbh paid me a visit at work and got to meet my coworkers. She was still a little grumpy from the morning, but as soon as she walked into the office she was smiling from ear to ear. 

Sadbh was in her element and didn’t have to work hard to charm everyone she met.  She was delighted to sit in my chair and for a few minutes I even thought she might take over my job from me.

After her visit, Sadbh headed off to see Ali-Baba and Kirk for a bit and then it was on to Greenlake for a nice long walk.

When Sadbh, Nini and Katie arrived home it was time for a quick dinner and then off to bed.  Sadbh was exhausted from the action packed day and she was fast asleep in no time. 

Nini was watching Sadbh for the evening, so that Katie and I could get out for an early 1^st Anniversary dinner.  We are so lucky to have Nini here with us and had a wonderful evening.

New photos.

Photos from July 27 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 26th, 2012

Thanks to Larissa, Sadbh had another great night sleep.

She woke up just after Larissa left at 6am and had no intention to go back to sleep.

She started off in a great mood, but soon that changed and she was grumpy.  She did not seem to have much of an appetite when it came to breakfast time.

All of a sudden she made a strange face and had the biggest poo ever. It obviously did the trick as her smile returned, as did her appetite.

Nadia was working today and Sadbh was very happy when she arrived.

After a short stroll outside, Sadbh started to get tired, so Nini and Nadia started to prepare for trach care.

Trach care went well, but Sadbh only slept for 40 minutes.

Her timing was perfect as she got to meet one of her new nurses that stopped by for a meet and greet. It was Audrey who took care of Sadbh last summer.

Sadbh did not recognize her, however this did not stop her from grabbing her hand to go for a walk.

Audrey will be working a few nights for the next couple of weeks and we are thrilled since she was so great to work with last year.

After Audrey and the nurse supervisor left, Sadbh got a couple hours of playtime in with Nini and Nadia. Eventually she started to get tired and ended up having a nice long nap.

After she woke up and had lunch, it was time to head out into the sunshine. They all headed off to a nice park in the neighborhood that had a water feature for the kids. Sadbh was fascinated and could not stop making the sign for water. 

Nini and Nadia tried out the Passy Muir Valve a couple of times today and Sadbh did great. She’s still making plenty of sounds and she even makes them while she isn’t wearing the valve.

Shortly after I arrived home I packed Sadbh up in her stroller and we both headed up to Capitol Hill for a walk. It was a perfect evening and Sadbh had a great time.

On our way home she spotted a fire engine driving by and she started to wave like crazy. When I looked around I could see one of the firefighters practically hanging out the window with a huge smile waving back at Sadbh.

She is so friendly and outgoing and the amount of smiles that she generates when she is out and about is incredible.

Sadbh started walking without any assistance several months ago, however she has regressed in the last few weeks and will only walk when holding someone’s hand. Last night she started walking solo again and today she kept it up.

She is a mysterious one our little Sadbh.

New photos.

Photos from July 26 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 25th, 2012

Sadbh slept great last night and woke up in time to spend a few minutes hanging out and playing with Larissa.

She was still a little bit tired, but not too tired for breakfast.

Later on she was thrilled when the contactors came into the house to pull a couple of windows out of the frame. She could not stop watching them and acted all shy when they made a fuss over her.

Gretchen was working today and Sadbh got to spend some time playing with her.

It wasn’t long before Sadbh was ready for her nap, so Nini and Gretchen prepared her bath and got everything ready for trach care.

Trach care went well and Sadbh slept for an hour and a half before waking in a great mood.

Once she was done eating, it was time to try out her Passy Muir Valve.

Sadbh did great and once she was done, they all headed out for a walk in the sunshine.

For dinner tonight, we all ate outside in the garden and Sadbh enjoyed it immensely.

She did start to pull on her trach a few times and even though we had a good talk with her about how dangerous it is, she would not stop.

It was a definite attempt for her to get our attention and she was persistent until we focused completely on her.

She has found our weakness and is sure to use it to her advantage.

New photos.

Photos from July 25 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 24th, 2012

Sadbh had a much better night last night. She got a little restless just around midnight, however she settled back down and slept like a log for the rest of the night.

She woke up around 6:15 and immediately was full of smiles and cuddles.

Today was Molly’s last day working with Sadbh, so Katie and Sadbh prepared a thank you card for her, and Sadbh drew a nice picture.

Molly arrived shortly after breakfast and Sadbh was over the moon to see her.

It was a beautiful morning and since the sun was out, they all headed out for a walk up to Madrona and to the viewpoint overlooking Lake Washington.

Sadbh was in her element and could not stop waving at everyone.

The excitement wore her out and soon it was time to head home for trach care.

Everything went great and Sadbh slept for an hour.

Lunch was served as soon as she woke up and then it was time to practice using her Passy Muir Valve.

Her voice is getting stronger and louder, even when she is not wearing the PMV.

We are all looking forward to her appointment next Tuesday with Dr. Inglis, however we are being very careful not to get our hopes up.

Sadbh and her entourage headed out for another long walk and she had a blast. Nini and Molly also had a great time.

Sadbh is really going to miss Molly, and I would say that stands true for Nini also. They always have a great time when they are working together.

I could not believe how good of a mood Sadbh was in when I arrived home from work. She was full of energy and could not get enough play time in. We had a fantastic time and it even got better when Katie arrived.

She was a little cranky by the time we were getting her ready for bed. Thankfully her day’s activities had her worn out so it did not take much to get her to sleep.

New photos.

Photos from July 24 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 23rd, 2012

We were grateful that Larissa was working last night as Sadbh was very active and woke up a number of times. It seems that she was sleepwalking and her heart rate stayed low each time.

She was awake at 6:45 and was in a great mood.

The painters were spraying the outside of the house again today, so after breakfast Katie and Nini gathered up all of Sadbh’s equipment and headed off to Ali-Baba’s place for the day.

Nadia followed them over in her car.

Sadbh was delighted to see Ali-Baba, but since she was quite tired, Nini and Nadia took advantage of the opportunity to give her a bath and to manage trach care.

She slept for an hour and a half and woke up with a smile and a huge appetite.

Right after she was done eating, it was time to practice using her Passy Muir Valve.

Sadbh did great and was distracted when Ali-Baba put a nappy on her teddy bear.

It didn’t take long for Sadbh to figure out how to remove the nappy, and after watching the video of her, I can totally see her brain working like crazy as she figured out how to remove it. It’s only a matter of time before Sadbh starts to remove her own nappy.

Sadbh got to go for a stroll through Ballard today and was thrilled when they came across a puppet show in a shop window.

She had a fantastic day and when it came time for bed, she was wrecked tired.

We are so fortunate that Ali-Baba and Kirk has allowed us and the entourage to hang out in their home while the house is being worked on.

Thankfully the painters will not be spraying tomorrow, so Sadbh will get to stay home while giving Ali-Baba a break from having her house invaded.

New photos.

Photos from July 23 2011.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – July 22nd, 2012

Sadbh slept like a log and did not wake until after 7am. She was in a fantastic mood and was eager to play as soon as she joined us in bed.

Katie made her blueberry pancakes for breakfast and she gobbled them all up while watching her Signing times DVD.

Later in the morning Sadbh got to Skype with my parents in Cork. Unfortunately, she was a little bit cranky since she was getting tired.

Trach care was a breeze today and Sadbh slept on for a couple of hours.

It was time for lunch as soon as she woke up and once she was full, we all headed off to Green Lake for a walk.

She was in her element waving at everyone that she passed. She is great at making people smile.

She did test our stress level today when she pulled her artificial nose off her trach a number of times. I have no idea why she did it, but she seemed intent on pushing our buttons.

We stopped by to see Clodagh, Cormac and their parents and Sadbh even got to see Luna and Cora.

Sadbh had a great day and was wiped out when it came time for bed. She had so much fun with her friends, but she realized that she has some competition with Cora over Cormac.

New photos.

Photos from July 22 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 21st, 2012

Sadbh had a wonderful night sleep and did not wake until 6am. Unfortunately this was a little bit too early for Katie and myself, especially since it was the weekend.

Nevertheless, Sadbh made up for it since she was in a great mood and was fully of smiles, kisses and hugs.

We had to leave the house early this morning since the painters were working. It was a last minute mad dash to gather up all of Sadbh’s things and we headed over to Ali-Baba’s to hang out for a few hours.

Sadbh was very happy to see Ali-Baba and Kirk and shortly after arriving we tried out her Passy Muir Valve.

She was extremely chatty and was happy playing with all the toys that Ali-Baba brought out for her.

A few hours later, Sadbh was starting to get sleepy, so we gave her a bath and started getting ready for trach care. She had no desire to nap, so Katie had to work overtime to get her to sleep.

The hard work paid off and before no time, we had Sadbh bundled up on the coffee table and were ready to manage trach care.

Sadbh slept right through until we were starting to secure her trach ties. At that point she woke up and got a little bit fussy.

Thankfully we were able to get her ties secure, but there was very little chance of Sadbh going back to sleep.

While having lunch with Ali-Baba, Sadbh found an ice cube and immediately started doing the baby sign for cold. It was very cute and she delighted with the reaction she received from everyone.

We headed off to Greenlake after she was done with lunch and since she only had a 20-minute nap, we hoped that she would fall asleep while heading around the late.

No such luck as she was thrilled with all the goings on around her. She was waving at people, pointing at dogs and every time she heard a motorcycle go by in he distance, she would do the baby sign for it.

We even bumped into one of Katie’s colleagues and his wife and daughter Allison.

Eventually we laid out a blanket on the grass and let Sadbh play in the grass. She practiced her PMV for a short while but after ten or so minutes she had enough and pulled it off.

By the time we were done at Greenlake, we were all quite hungry so we headed over to meet Neil in West Seattle for some pizza. Sadbh finally fell asleep just before we arrived and she slept soundly in her stroller for another 40 minutes or so.

Once she woke up, she couldn’t believe her luck and instantly devoured a few slices of pizza.

She also had a large feed of peas, cheese, blue berries and yogurt.

Looking at her, you wouldn’t know where she puts all this food, but after changing her nappy three times today, I completely understand where it all goes.

Once she was done with dinner, it was time to go for a walk. Next door to the restaurant there was a tattoo parlor and Sadbh made a couple of new friends straight away. She was flirting like crazy with the two tattoo artists and they were both smitten by her charms. I wonder when she will figure out the baby sign for tattoo.

She’s only 15 months old, can you imagine what she’s going to be like when she’s 15 years old?

New photos.

Photos from July 21 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 20th, 2012

Sadbh joined us upstairs last night since we did not have a night nurse and she did great. She woke up around 1am and cuddled with both of us for a short while. She needed a suctioning and a nappy change so Katie managed that while I kept her comforted.

Before she knew it, she was back in her cot and fast asleep.

She slept until 6:30 and was very happy when she woke up. She made a lot of sounds through her vocal cords, despite not wearing her Passy Muir Valve.

She had a big breakfast and she could not wait to start playing with her toys and Nini.

Sadbh’s new nurse, Gretchen, started work today and Sadbh was quick to show off her dancing moves.

The weather was terrible today so everyone was house bound for the morning.

Ali-Baba stopped by to hang out and Sadbh was thrilled.

Sadbh got to use her Passy Muir Valve and made a lot of beautiful sounds. Ali-Baba was very impressed.

Sadbh grew tired, so it was time for a bath and trach care.

She had a 2-hour nap and was in a great mood when she woke up and she could not stop making sweet sounds.

Lunch was served and immediately afterwards it was time to use the PMV again.

Sadbh had a fantastic day and her sounds are getting more and more pronounced.

New photos.

Photos from July 20 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 19th, 2012

Sadbh was turning cartwheels all night, however she was in a deep sleep and did not wake until after 6:30.

She had no desire to go back to sleep and was very eager to start the day.

She had a mighty appetite and really enjoyed her breakfast.

After she was done with breakfast it was time to read some books with Nini.

She loves her books and cannot get enough of them.

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

Since Sadbh was awake so early this morning, trach care was much earlier than usual. Sadbh dropped off into a deep sleep right after her bath, so Nini and Nadia were able to manage trach care without any problems.

Sadbh slept on for over an hour and woke up a very happy little girl.

Sadbh has a new nurse starting tomorrow, so today she got to job shadow Nadia for a while. She was accompanied by one of the agency nurse supervisors and Sadbh was very excited with all the activity in the house.

She took a shine to the new nurse straight away so grabbed her hand for a tour around the house.

After the two guests left, it was time for Sadbh to go out for a nice long walk with Nini and Nadia.

It had turned out to be a fantastic day and Sadbh was in her element as they strolled throughout the neighborhood.

Later on she dozed off to sleep and had a nice nap for 30 minutes or so.

I arrived home to a very happy little girl and soon afterwards we loaded Sadbh and all her equipment and headed downtown to meet Katie for some shopping.

Downtown was full of people and Sadbh was waving frantically at everyone she saw.

In the clothing store she was flirting with all the salesmen and she really took a shine to a couple of male mannequins. It was so funny to see her try to grab their hands.

On the way out she fell in love with a purple purse and wanted to kiss it. I honestly don’t know if I should be laughing or scared for the emerging diva that we are raising.

Nini and Nadia had tried out the Passy Muir Valve a few times throughout the day today and Sadbh did fantastic. She even made a load of loud sounds while wearing her artificial nose. She’s really enjoying the sound of her own voice and I cannot wait until she gets a few more words down.

New photos.

Photos from July 19 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – July 18th, 2012

Sadbh slept great and only needed to be suctioned once. She was holding onto her jaw for part of the night, however she slept right through until 7am.

She was in a very good mood, but only wanted to be with Katie.

Molly was working again today so Sadbh got to spend the morning playing and dancing with Molly and Nini.

She had a fun morning and after a few hours it was time for her to take a bath and for trach care.

Sadbh got to bathe in the regular bathtub for a change and she loved it. All that room to splash around, she was in her element. It took a lot of effort for both Nini and Molly to make sure that she did not slip and fall under the water.

She was fast asleep soon after her bath, making trach care quite easy. She slept on for an hour and a half and was in a fantastic mood when she woke up.

Since she was well rested, it was a good time to try out the Passy Muir Valve. Sadbh did great and she was making lots of sounds, much to the delight of Nini and Molly.

Once she was done with the PMV, it was time for a big lunch. She had a huge appetite and devoured her food in no time.

It was a lovely afternoon, so Nini and Molly took Sadbh out for a long walk up to Madrona. Sadbh wore her PMV for part of the trip and as well as waving at people, she also started to say hi. It was fun for everyone, most importantly for Sadbh.

Sadbh wanted to get out of her stroller so Nini carried her for a few blocks up on her shoulders. Sadbh was so happy to be up in the air.

Eventually she got tired and took a nice hour-long nap in her stroller.

She had a great evening and got to use her PMV again before bedtime. The amount of sounds that she is making is very impressive and very encouraging.

New photos.

Photos from July 18 2011.

All the best,

Wayne, Katie and Sadbh.