Sadbh’s update – June 30th 2014

 

Sadbh managed 38 minutes with her trach capped before Danielle had to remove it. Danielle suctioned her trach shortly after 3am and Sadbh slept like a log until 8 when she woke up in an excellent mood.

Sadbh got up in time to hang out with Mommy for breakfast before she headed off to work.

It was a beautiful day so we headed out onto the back porch to do home work and arts and crafts in the sunshine.

When Sadbh had enough of that we headed out in to the garden to play football and she had a wonderful time.

Later we headed off in the red wagon up to Madrona and back down to Nora’s Woods. It was quite the slog pulling Princess Sadbh and all her equipment in the baking heat. I think I got a week worth of workout in that walk.

Sadbh enjoyed herself so it was well worth all the hard work.

Trach care was easy enough tonight but bedtime was not so easy. Sadbh did not want to give up watching My Little Pony on the iPhone but she eventually had to give in.

New photos.

Photos from June 30 2011.

Photos from June 30 2012.

Photos from June 30 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 29th 2014

Sadbh slept great but refused to wear her trach cap. Katie took over from Danielle at 6 and Sadbh slept on for almost two more hours.

Sadbh was delighted to see Mommy next to her when she woke up. She was very hungry and asked if they could make pancakes for breakfast.

Katie had a busy morning so I kept Sadbh busy playing and reading books. She had a lot of fun and was quite tired when we headed out to run errands.

Her friend Aidan stopped by with his dad in the early afternoon for a short while and Sadbh was very happy to see him. Aidan had just woken up from his nap so he had a lot of energy and he kept Sadbh highly entertained.

We headed over to West Seattle for dinner but by now Sadbh was delirious and in need of a nap. She was bouncing all over the place but thankfully she did not disturb any of the other people in the restaurant.

Bedtime was an effort and it took a number of bedtime stories before Sadbh finally fell asleep.

New photos.

Photos from June 29 2011.

Photos from June 29 2012.

Photos from June 29 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 28th 2014

Sadbh managed having her trach capped for 44 minutes while she slept last night and woke up in an excellent mood.

As soon as she was unhooked from all her equipment we both headed upstairs to snuggle up with Mommy.

Sadbh was very giddy and was delighted to see Mommy.

We had a very busy day running errands and getting things done around the house. That said Sadbh had a fun day and was very helpful.

We got trach care out of the way in the early afternoon and headed off to do some shopping straight away afterwards. We were not far from the house before Sadbh fell asleep and she slept for over an hour and a half.

In the evening we headed out for an ice cream and Sadbh was delighted. She picked a cotton candy ice cream and it was a very similar colour the pony that she brought along. She made a huge mess but it was well worth it.

She was still delirious when we got home but it did not take long before she fell asleep.

New photos.

Photos from June 28 2011.

Photos from June 28 2012.

Photos from June 28 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 27th 2014

Sadbh was a no go with her trach cap last night but she had a wonderful night regardless.

She woke up in a brilliant mood and was ready and eager to start the day.

We both had a fun day reading many of Sadbh’s favorite books and playing firefighters. I was lucky that she had two fire fighter helmets and that she was willing to let me wear one.

When Mommy came home we managed trach care and then headed off to Magnussen Park to hang out and check out a band perform with Cormac, Clodagh and their parents.

Sadbh got a blast of energy and had a lot of fun. She was running around like crazy and made friends with a bunch of girls that she met.

She was still wide awake when we got home shortly before nine but it did not take long for her to fall asleep once she was cleaned up and in her pajamas.

New photos.

Photos from June 27 2011.

Photos from June 27 2012.

Photos from June 27 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 26th 2014

Sadbh refused to wear her trach cap again last night but slept well until quarter past seven. She was sitting up waiting for Mommy to come in when I popped my head in the door. She wanted Mommy and not me so I put on one of her hats and crawled in like a mouse scurrying around her room, much to her delight. Eventually I made my way to her bed and started nuzzling her belly when all of a sudden she let out the biggest fart ever. The two of us burst out laughing and that’s how our day started.

Sadbh had her monthly nurse supervisor recertification visit today and she was happy to see Caity when she arrived.

I gave Caity the most recent update on Sadbh’s nighttime capping and we also chatted about things in general. When I told her the news about Katie expecting she admitted that she already knew as Sadbh had told her a month ago during her last visit. No secrets with Sadbh around. Too funny.

Sadbh’s stroller has been an important asset as it has neatly stored and carried all her portable medical equipment for the past three plus years. The frame snapped a few weeks ago and I was able to temporarily bind it together so we could keep using it until we bought a replacement.

Even though the warranty had expired I figured it was worth a shot calling the customer care number for the manufacturer to see if they had any advice. As luck would have it they shipped a replacement frame at no cost since the weld that snapped could not be repaired. The replacement arrived today and both Sadbh and I were over the moon. She kept talking about how nice and shiny it was and then she became obsessed with popping the bubble packaging that the frame shipped in.

As long as Sadbh has a trach we will be hauling her portable medical equipment around and since all her equipment combined weighs over 36lbs we will be using her stroller. I suppose we should expect to get another three or so years out of this new one.

Mommy came home a little earlier than usual so we could take Sadbh to her acupuncture appointment. Our last visit was in March and in the car today Sadbh started talking in detail about the last visit. Her memory is so sharp and never ceases to amaze both Katie and me.

Her acupuncture session went really well and Sadbh did a great job allowing Brenda work her magic. It was more like acupuncture pressure rather than needles and Sadbh did not mind at all.

Brenda could tell that Sadbh’s digestion was off so she also worked on that.

We managed trach care again before bed and Sadbh watched her old favorite, Kipper the dog during it.

As soon as we finished Sadbh jumped into bed and was fast asleep in no time at all.

New photos.

Photos from June 26 2011.

Photos from June 26 2012.

Photos from June 26 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 25th 2014

Sadbh had a better night but she got upset when Helen tired to cap her trach. Helen decided to hold off on capping for the rest of the night to allow Sadbh to get a good night sleep.

She woke up around half past six and was chatting away to Helen until Helen’s shift ended. Just as Helen was getting ready to leave Sadbh asked to see her belly button. No idea where that came from but it was quite funny.

As soon as she was up out of bed I gave her a saline nebulizer and suctioned to clear her trach and airway.

During breakfast Sadbh told me that she liked Tiger, who is one of Kipper’s friends, because he had a beard like me. I suppose that was a compliment.

She had a great morning and was excited for her play date with Conor and Aibhin. Just before her friends arrived Sadbh became very uncooperative and when she did not get her way she started to hyperventilate on purpose resulting in me having to remove her trach cap and suction since she built up quite a bit of secretions. It always ends up very stressful for the both of us.

She was thrilled to see her friends arrive so we all headed out into the garden for some fun in the sun.

It was a wonderful day and the kids had a blast playing with all the toys out in the garden.

The rest of the day was spent reading and playing. Sadbh has an amazing imagination and so much energy. It is very hard to keep up with her.

We managed trach care just before bedtime and we were all exhausted.

Katie usually reads a bedtime story to Sadbh and tonight when she went out to get Sadbh a glass of milk Sadbh asked me to “mind her”, but as I sat down next to her she grabbed my hand and said “you can go when mom comes back”.

She was off to sleep in no time.

New photos.

Photos from June 25 2011.

Photos from June 25 2012.

Photos from June 25 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 24th 2014

Sadbh slept well for the most part but would not allow Helen to cap her trach. She was a little restless at times and Helen needed to suction to clear her airway.

She woke up moments before Helen’s shift ended and pretended to sleep until both Katie and I came into the room.

Sadbh definitely woke up on the wrong side of the bed this morning and would not do anything asked of her, all day. It was very exhausting.

We were able to cap her trach almost immediately after she got up, but it did not last long and it did not go back on for almost three hours.

We headed out for a walk up to Capitol Hill and we got about two blocks away from the house before Sadbh wanted to be either carried or pushed in her stroller.

Before leaving the house, she insisted on wearing her winter snow gloves.  Along the way a lady asked if she suffered from cold hands.  Sadbh’s hands were definitely not cold.  She wore the gloves all the way there and all the way back.

I was exhausted by the time we got to the store but Sadbh demanded that we fly through the store as quickly as possible so she could find Kangaroo Joey, from the comfort of her stroller.

The rest of the afternoon was much the same.

Trach care went easily enough and by bedtime she was more than ready for sleep.

New photos.

Photos from June 24 2011.

Photos from June 24 2012.

Photos from June 24 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – June 23rd 2014

Sadbh tolerated her trach being capped for an hour and had a great night sleep.

She was wide-awake by 7 and got upset when she looked over and saw me sitting next to her rather than Mommy. It took a while to win her over and when I did it was worth the effort.

We had a very busy morning and Ali-Baba came by to help out. Sadbh was excited to get to spend the morning with Ali-Baba.

We had an appointment downtown and since the office that we were meeting in was so small, Ali-Baba and Sadbh hung out in the waiting room. Sadbh was fairly well behaved and despite our meeting taking over two hours she educated Ali-Baba on all things related to “My Little Pony”.

As soon as our meeting was done Ali-Baba came home and helped me manage trach care on Sadbh. She kept Sadbh entertained with stories of all the different animals that she encountered when she lived on a small farm in southern Oregon.

By the time we finished trach care Sadbh was very tired. She wanted to nap but was way too restless. We headed out into the garden where she had so much fun playing with her toys and checking on the vegetable garden.

At one point she walked over to inspect the veggies and turned to me and said, “they are coming on just fine”. I was in stitches laughing at how sincere she was. Little miss know it all.

By dinnertime Sadbh was beyond tired. She knocked over her milk glass twice, making a huge mess each time, which we did not cry about.

When she went potty just before bed she peed all over Katie’s leg.

She had a fantastic day and just as she was getting into bed she insisted on checking out the picture of her new sibling in Mommies belly that we had taken earlier in the day.

New photos.

Photos from June 23 2011.

Photos from June 23 2012.

Photos from June 23 2013.

All the best,

Wayne, Katie, Sadbh and Spud II.

Sadbh’s update – June 22nd 2014

Sadbh slept like a log last night and managed two hours with her trach capped.

There was a wild party across the street last night and thankfully Sadbh slept through it. Both Katie and I were awake until shortly after 4 so, when it came time to take over from Danielle, Katie was exhausted.

I got up a couple of hours later and took over so Katie could catch up on some sleep. Since I did not have the energy to keep up with Sadbh I put on Frozen in the hope that would buy me some time. I also thought that I might be able to sneak in a quick nap however Sadbh had no intention of allowing that and kept demanding that I open my eyes to watch the show with her. There is absolutely no getting away from this movie!

This did not slow Sadbh down and she had a fantastic day.

She spent most of the morning out in the garden helping with weeding and planting vegetables.

After trach care we headed off to Flying Squirrel Pizza for dinner. By now Sadbh was very tired and fell asleep moments after getting into the car. Even after dinner was served it took ages to wake her up.

Since it was such a beautiful evening we headed to Seward Park for a stroll. Sadbh could not wait to get her shoes off and to soak her feet in the cool lake. She had a brilliant time and did not want to leave.

We drove home along the lake and Sadbh loved the cool breeze as it tossed her hair around.

Despite her late nap it was easy getting Sadbh to sleep tonight. She was out shortly after her head hit the pillow.

New photos.

Photos from June 22 2011.

Photos from June 22 2012.

Photos from June 22 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 21st 2014

Sadbh managed having her trach capped for two and a half hours over a couple of sessions last night. She woke up very happy to see Mommy sitting next to her and she was ready for a fun and exciting day.

After breakfast Ali-Baba came by and the three ladies headed off to a strawberry farm in Monroe.

Sadbh was so excited and could not wait to pick berries.

The farm had been picked over already so Sadbh had to look hard to find strawberries. She found some raspberries too and even a big snail.

She was very tired by the time she got home. Mommy and Ali-Baba got trach care out of the way and Sadbh had a fun evening playing with her toys and looking through old photos of herself over the past three years.

When it came time for bed, Sadbh was exhausted but would not go to sleep until Mommy read her a book that we made that documented her time in hospital and her Grandad & Nana book. She was very insistent that she needed to read them both.  It took a while but eventually she fell asleep.

New photos.

Photos from June 21 2011.

Photos from June 21 2012.

Photos from June 21 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 20th 2014

Sadbh slept well but refused to wear her trach cap.

She woke up very happy around half past seven and was very eager to get the day going.

After breakfast she found some used chewing gum on the ground and not knowing what it was she picked it up to show me. It was from the night nurse and to be very honest I was appalled.

Sadbh and I had a fun day and she was so happy when Ali-Baba stopped by for a tea party. The two ladies had a wonderful time and Ali-Baba even helped out with trach care.

Sadbh was sad to see Ali-Baba leave but we spent the rest of the day playing with all her cuddly toys and ponies while role playing to the movie Frozen. I’m so sick to death of that movie. I need to find a Frozen anonymous group fast!

By the time Mommy arrived home Sadbh was wired to the moon. She had not napped and was overly tired. After ten or so laps around the house we headed out for a walk through the neighborhood for a walk. By now Sadbh was motivated by the promise of ice cream and I do not think we have ever walked so fast, ever.

Bedtime tonight was easy-peasy and as soon as Sadbh was cleaned up, teeth brushed and in her pajamas she was out like a light.

            

New photos.

Photos from June 20 2011.

Photos from June 20 2012.

Photos from June 20 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 19th 2014

 

Sadbh refused to wear her trach cap for Danielle and I tried in vain again after taking over from Danielle at 6. She was like a sleeping but very alert ninja and went to remove it split seconds after popping it on.

During breakfast we called Granddad so Sadbh could sing “Happy Birthday” to him. She told him how much she missed him and chatted away for ages.

We had a fun morning and got to spend time planting potatoes in the garden.

Sadbh really wanted to go to the park and soon got very impatient. As I was washing my hands I could hear her moaning by the back door. When I poked my head out of the kitchen I noticed Sadbh lying on the ground with her emergency backpack on. It weighs about 35lbs and she had no hope in standing up with it.

We loaded up the wagon and set off. It was starting to get warm as Sadbh pulled on her reigns directing me down the driveway. Soon I was trotting down the street with the royal princess beaming and looking very proud.

It took forever to find this new playground that Katie told me about. Sadbh could not wait to get out of the wagon and she had a wonderful time discovering this new park.

We had to be home before 1pm as we were expecting a repair guy for the fridge. We had a window from 1 to 5 and as expected the technician showed up at 4:55. Nevertheless, despite the beautiful weather and having to be inside as we waited, Sadbh and I fun time. We played with her puzzles, board games and a couple of other games.

When Mommy came home we took care of trach care and at one point I thought the service technician wanted to help.

As soon as he left we loaded up the car and headed off to meet up with Helen and the rest of our friends at a park in Wallingford.

Sadbh was so excited to see her friends there and they all had so much fun playing together. Her appetite throughout the day was not great but she made up for it at the park and ended up eating lots of chocolate cake.

By the time we got home she was exhausted and fell asleep as soon as she was cleaned up and in her pajamas.

New photos.

Photos from June 19 2011.

Photos from June 19 2012.

Photos from June 19 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 18th 2014

It was a long night. Sadbh tossed and turned and at one point she ended up at the foot of her bed wrapped up in her wires and hoses. She was very restless but still managed to get a good night sleep. Wish I could have said the same for myself.

She was not too pleased to see me first thing in the morning but after I silenced the alarm on her Oximeter she calmed down and gave me a big hug. It’s possible that her Oximeter alarm frightened her, as it did me.

Sadbh had a very busy day as she had a play date with Conor and Aibhin. She was in for a special treat as Aoife’s parents were visiting so she got to say hi to Marion and Kevin also.

The weather wasn’t great so the kids played indoors for a change, but this worked out fine and they all had fun.

Later in the day Sadbh got to hang out with our friend Helen who is visiting from jolly old England. It’s been a couple of years since we’ve seen Helen and despite being shy at first, Sadbh warmed up quickly.

She was excited when Mommy came home and soon introduced Helen to the soundtrack of the movie “Frozen”. (Sad to say that this bloody soundtrack is playing in my head every morning when I wake up.)

Trach care was managed just before bed and as soon as she hit the pillow she was out like a light.

Fingers crossed that the weather will be better tomorrow so we can get out for a walk early in the day.

New photos.

Photos from June 18 2011.

Photos from June 18 2012.

Photos from June 18 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 17th 2014

Sadbh had a much better night sleep but still did not wear her trach cap. It’s disappointing that she is not even allowing Helen the opportunity to put it on.

She woke up around 7:30 and was ready to start the day. She was very hungry and had a nice breakfast before getting dressed.

Once she was done with breakfast we headed out to run a few errands and Sadbh was so helpful.

After we arrived home I had to move the car to the front of the house. Sadbh gave me a hand driving and actually asked me to sit in the passenger seat. She looked like she knew what she was doing but couldn’t even see over the dash.

Sadbh got to chat with Nana and Granddad this evening and promised that she would start wearing her cap at night again. She really wants to visit them in Ireland and especially wants to meet her cousin Fionn.

Sadbh is getting pickier with her food and lately we have been wasting so much food. Tonight I decided not to cook something different for her and to give her exactly what Katie and I were eating. She picked through it and ate some, but I think she wasted less and still satisfied her appetite.

Before bedtime Sadbh got to call Ali-Baba to sing “Happy Birthday” to her. She asked me to quiet down so she could sing clearly.

We managed trach care at bedtime and Sadbh was not too pleased. She wanted to watch a particular Kipper show so it took a while to find the one that appeased her.

Thankfully it did not take long before she was fast asleep.

Yesterday we signed the final document for Medicaid coverage for Sadbh. This process started in February however it is complete now and will help provide Sadbh the coverage she needs if either of her main insurance companies let her down. We are still in the process of an external appeal for Aetna and have so many documents to complete and submit.

We also received a nice big bill from her medical supply company, Apria (nicknamed “Crapria”), and after waiting on hold for almost an hour I explained for the umpteenth time who her primary and secondary insurance companies are. They assured me that they would correct the issue, yet again, and will contact me as soon as possible when it is resolved. Not holding my breath.

This morning I received a separate call from an Apria representative, calling from India, asking me to verify Sadbh’s credit card number.  It was very obvious that these two departments are not connected so I explained that I was dealing with their corporate office and that he should contact them for an update on payment and where this payment is coming from. 

Helen called in sick tonight so I'll be spending the night with Sadbh tonight. 

New photos.

Photos from June 17 2011.

Photos from June 17 2012.

Photos from June 17 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 16th 2014

Sadbh put up a fight for Helen last night and refused to wear her trach cap. She woke up just before 7 but thankfully went back to sleep for another hour.

She was in a fantastic mood when she got up and got to snuggle with Mommy for a short while before she headed off to work.

Sadbh and I had a very good day but spent the early part indoors since the weather was quite wet.

Sadbh was so excited to hear Mommy pull in the driveway.

After dinner Sadbh had me load up the wagon and I pulled her through the neighborhood to Nora’s Woods. She had a great time pulling on the reigns and shouting “giddy up”.

We waited to manage trach care just before bedtime and shortly afterwards Sadbh was fast asleep in bed.

New photos.

Photos from June 16 2011.

Photos from June 16 2012.

Photos from June 16 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 15th 2014

Sadbh did almost three hours consecutively with her trach capped. Danielle left it off for the rest of the night so she could sleep comfortably for the rest of the night.

She slept in until just after 7:30 and helped Mommy write a Father’s Day card. She had so much fun and Katie was able to capture some of the fun on video.

She could not wait to come upstairs to give me my cards and jumped into bed while I read it out.

It was the best wake up call ever.

We headed over to Ballard to the farmers market with Jules and Art and Sadbh insisted on riding in the stroller. The market was packed and Sadbh enjoyed watching a few buskers perform. There was one kid who really impressed Sadbh with his juggling act.

The rest of the day was very lazy.

Ali-Baba stopped by in the evening to help out with trach care and Sadbh was over the moon to see her.

By bedtime Sadbh was delirious and could not settle down. It took a while to calm her down but soon she was fast asleep.

New photos.

Photos from June 15 2011.

Photos from June 15 2012.

Photos from June 15 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 14th 2014

Sadbh managed just over an hour with her trach capped and had a very good night sleep.

For breakfast Sadbh helped Mommy bake biscuits and had a brilliant time making a mess.

We got trach care out of the way early today and later our friends Jules and Art came for a visit.

Sadbh was super tired and very clingy to mommy so she was not up to socializing much.

We headed out for dinner and not long after hitting the road Sadbh fell fast asleep. She woke up a while later in Mommies arms in the restaurant and was not too pleased.

Thankfully she calmed down soon afterwards and she got stuck into some pizza.

At bedtime Sadbh loaded up her bed with as many stuffed toys as possible. There was hardly enough room for her but she managed to find a space before falling asleep.

New photos.

Photos from June 14 2011.

Photos from June 14 2012.

Photos from June 14 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 13th 2014

Sadbh kept getting tangled up in her humidifier hose throughout the night but despite this she slept great.

The weather was not so good today but Sadbh insisted on us going out in the lashing rain to wave Mommy off as she headed to work.

Katie wasn’t feeling so well today so she came home shortly after leaving. I kept Sadbh distracted so she did not know that Mommy was home and so Katie could work from upstairs.

Sadbh and I had a great morning and played in her room building camps and pretending to be ponies hiding from thunderstorms. I wonder if I can put that in my resume?

Later in the day while Sadbh and I were playing hide and seek Katie took over when searching for Sadbh. Sadbh obviously did not expect to be found by Mommy and was over the moon when she did.

After that we got trach care out of the way.

Sadbh would not eat throughout the day but when it came time for dinner she was starving. She ate quite a meal and definitely made up for her fasting earlier in the day.

Our next-door neighbor, Pat, came over for dinner tonight and Sadbh showed off many of her ponies.

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

           

New photos.

Photos from June 13 2011.

Photos from June 13 2012 .

Photos from June 13 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 12th 2014

Sadbh managed just over three hours with her trach capped last night and slept soundly until 8. She woke up looking for Mommy but was not upset when she learned that Mommy had already left for work.

We both had a great day and managed to get out into the garden for a while in the morning while the contractors were finishing up their work.

Later in the day Sadbh and I headed out down the street in the little red wagon to the nearby park. Sadbh was hoping her friends from last week would be there but she did not mind when she discovered that they were not there.

We hung out at the park for over an hour and Sadbh burned of some serious energy going from one thing to another. She must have gone down the slide at least twenty times and even made numerous attempts to climb back up the slide.

At one point while I was texting with Katie I heard someone shout at me from the top of the slide “put down that fucking phone”. I was shocked and horrified at how grown up she sounded and I had a hard time trying to no laugh.

That put an end to our fun at the park and Sadbh quickly learned that she should never talk like that. I have no idea where she learned that word. I better check that “My Little Pony” show that she loves so much, maybe that’s where the bad influence is coming from.

As soon as we arrived home it was time for a bath and snacks.

We had a fun evening reading while waiting for Mommy to arrive home from work.

After dinner we got Sadbh ready for trach care and then bed. She was completely exhausted so she was out like a light in no time.

We received a call from Helen earlier in the evening letting us know that she would not be coming to work tonight. Lucky Sadbh, she get’s to spend another night sleeping next to me.

New photos.

Photos from June 12 2011.

Photos from June 12 2012.

Photos from June 12 2013.

All the best,

Wayne, Katie and Sadbh.