Sadbh’s update – September 30th 2012

Sadbh slept really well and joined us in bed around 6am. Katie woke up to find Sadbh standing in her cot staring directly at her. After a quick cuddle, Sadbh fell back to sleep and did not budge for an hour and a half.

When she did finally wake up, she had the biggest smile on her face and once we had finished suctioning her trach she gave both of us a hug.

She had a great appetite for breakfast and got to watch one of her singing time DVD’s. Once she was done she wanted to change her dolls clothes. She figured out how to remove the dolls clothes, but had me put the clothes that she wore yesterday morning on her doll.

We got to Skype with my parents and Sadbh made them laugh with all the yogurt that was smeared all over her face.

Overall Sadbh had a fun morning playing with all her toys and by the time she was ready for her nap she was pooped.

Trach care was very easy and Sadbh slept for almost two and a half hours.

Sadbh was more interested in playing with her food during lunch rather than eating it and after she was done making a huge mess we headed out to the Arboretum for a walk through the park. The weather was perfect and Sadbh had a great time.

There was a beautiful full moon tonight and Sadbh wanted to go outside to check it out. After blowing the moon a few kisses it was time to head up to bed and to sleep.

New photos.

Photos from September 30 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 29th 2012

Sadbh woke up just before midnight and was very agitated. She wanted Katie and as soon as she cuddled into her it did not take long for her to fall back to sleep.

She was like that a few more times through the night but she always fell back to sleep, eventually.

Even though it was Saturday she had no problem waking up at 6am.

She was in a very happy mood and was determined to get the day started.

Sadbh had a great morning and since our paint project finally finished, we set up all the books back up back on the shelves in the living room.

Despite placing all the books back where they belong, Sadbh had a great time removing as many as she could.

Eventually she got tired and it was time for trach care and more importantly, her monthly trach change.

She really enjoyed her bath and as soon as she was cuddled into Katie’s arms, it did not take long before she was fast asleep.

Trach care was very easy and despite our usual stress around trach change, everything went really well.

Unfortunately, Sadbh woke up just as we were securing her trach ties. She was very fussy but once we finished up she was very happy and full of smiles and hugs.

Sadbh had a play date with her friend Grace and both girls had a fantastic time.

Cookie Monster was the center of a tug o’ war between both ladies and it was the source of amusement for everyone else.

It was a lovely day so everyone headed up to the park in Madrona and for ice cream. The girls even got to play on the slides and the other fun playground things.

Sadbh really enjoyed hanging out with Grace and despite not having had a proper nap all day she was in an excellent mood.

By bedtime she was still in a great mood however you could see that she was completely exhausted. It did not take long for her to fall asleep.

New photos.

Photos from September 29 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 28th 2012

Sadbh slept much better last night and woke up in a good mood at 6:30. Thankfully she did not have a coughing fit and Katie even got to cap her trach for over 3 minutes.

Sadbh did great with the cap and enjoyed playing with bubbles in the bathroom until she gave a big cough and the cap ended up flying across the room.

Su Jin was working today and Sadbh was over the moon when she saw her.

Ali-Baba came over to hang out and help with trach care, so all three girls had a fun time.

To Sadbh’s delight, Su-Jin placed one of her old trachs on Regal the beagle. Sadbh was fascinated and could not keep from checking it out.

Trach care was very straightforward and Sadbh got to take a well-deserved nap.

After she woke up and had lunch, Su Jin and Sadbh went out for a nice walk through the neighborhood. Sadbh could not stop smiling and they both had a great time.

Later when Sadbh got tired again, she started to put all her stuffed toys to sleep. It was quite the ordeal, but it was interesting to watch the determination in her face despite the fact that she was quite exhausted herself.

Sadbh never did get that second nap and as soon as I arrived home she twisted my arm to allow her climb back into the cabinet in the living room again. This time she wanted Cookie Monster in there with her.

As soon as Katie arrived home we all headed out to the local farmers market. It was a perfect evening for a stroll and Sadbh enjoyed her second outing of the day.

Bedtime could not come soon enough for Sadbh but she was fascinated with the moon as it shone in through the kitchen window. Before we got her to bed I brought her outside into the back garden so she could get to see the moon through the trees and just as we were about to head back in, she blew it a big kiss.

We don’t have a nurse tonight so Sadbh is sleeping upstairs with us. I hope she sleeps well as we have her monthly trach change scheduled for tomorrow and both Katie and I need to be physically and mentally rested and ready.

New photos.

Photos from September 28 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 27th 2012

Sadbh had a terrible night sleep and was very restless. By 6am she was awake and looking for Katie.

A few minutes after Larissa left, Sadbh started her coughing fit and ended up throwing up all over the place.

Once she was done, she gave both Katie and me the biggest smile ever.

Despite not having a temperature, Sadbh has been dealing with a cold for the past few days and we are lucky that she had been able to manage her secretions for the most part. We have been suctioning a lot more than usual, but she can clear her airway during the day while she is awake.

We did not have day nursing again today so Katie stayed home to look after Sadbh.

Sadbh was in for a treat after breakfast as she got to Skype with Nini in Germany. She got very excited when she heard her voice and seen her face on the computer.

Nini even played hide and seek, however Nini did not realize that Sadbh could see her the whole time.

Sadbh got tired very early and ended up taking a two and a half hour nap. Unfortunately, this was still early in the day so Ali-Baba could not come over to help with trach care.

For lunch Sadbh had spaghetti O’s and she made such a huge mess. She had it all over her face and clothes and it took Katie forever to get her cleaned up.

We decided to put Sadbh down for a nap and to start on trach care shortly after I arrived home from work.

She was exhausted and had no problem falling asleep. However as soon as we were securing her trach ties she woke up and got very agitated.

Once we finished up she had no intention of going back to sleep and had an amazing amount of energy.

For the next couple of hours she was running and racing around the house and towards the end she was more like a zombie than anything else.

Bedtime was fairly easy and she was in a deep sleep not long after Katie bundled her up in her arms.

New photos.

Photos from September 27 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 26th 2012

Sadbh tossed and turned all night and thanks to Larissa she stayed asleep until after 6.

She was done sleeping by 6:20 and was demanding to be brought to her mommy.

Sadbh started her morning coughing fit and immediately Katie and I jumped into action to prevent her from throwing up. Katie turned on the hot water to steam up the bathroom and I grabbed the suction machine to clear out her trach.

She coughed up a lot of thick mucus and thankfully cleared her airway without getting sick.

Since we did not have day nursing today, I stayed home to look after Sadbh. Things did not start off well as I pulled my back when leaning down to get the suction machine.

Sadbh was in a very clingy mood throughout the entire day and wanted to be carried as much as possible.

As she had woken up so early, her naptime also came earlier than usual. Ali-Baba stopped by to help with trach care and Sadbh slipped into a nice deep sleep for an hour and a half.

After lunch Sadbh discovered one of the cabinets in our living room and before I knew it she was inside. Next thing she was asking for her stuffed toys and was smiling from ear to ear with her monkeys, dog and a few dolls. She drew the line when it came to Cookie Monster and would not allow him to join in on the fun.

She did not want to leave the cabinet so I had to distract her with a balloon. She ended up running around the living room with the balloon tied to her pants. It was very funny to watch, but I think Sadbh was not as amused as I was.

Once Katie returned home from work we capped her trach to see how she would manage and she tolerated it for almost ten minutes. She did pull it off a couple of times, so we had to distract her with bubbles and the likes.

When it came time for bed she was absolutely exhausted. It was a struggle to get her changed out of her clothes and into clean pajamas and she even pulled the nose off of her trach.

She finally calmed down and after a bedtime story and a nice long cuddle, she fell asleep in my arms within no time.

I have a feeling that both of us are going to sleep well tonight.

New photos.

Photos from September 26 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 25th 2012

Sadbh slept great last night and Larissa only had to suction once.

She was still fast asleep when Su Jin changed shifts with Larissa and when she woke up she was in a great mood.

Unfortunately she had a several bad coughing fits and ended up throwing up all over her room. Katie and Su Jin took her into the bathroom and ran hot water in hopes that the steam would help her stop coughing and also to give her a wash.  While she was standing at the bathtub naked she decided that it was a great time to have a pee. She was very happy with herself until Katie sat her on the toilet while she was still peeing, but that was not to Sadbh pleasing.  The steam worked a treat, though, and Sadbh’s coughing was soon better.

Thankfully Su Jin was there to help as it was a very stressful moment, however, Sadbh did not seem anyways put out by the ordeal.

As soon as she was cleaned up and in fresh clothes they headed into the kitchen where Sadbh had a huge breakfast.

The nursing agency had to recertify Su Jin so the supervisor came by shortly after 7:30. The agency had originally wanted to send complete the recertification at 6:00am but after a heated argument yesterday, they reconsidered the start time and pushed it out an hour.

Just like last week, it seems that the agency does not consider that they are working within a family home and that they cannot simply come and go whenever they feel is convenient for them.

Our current nurses are great and completely respect the fact that they are in our home and provide Sadbh, Katie and me with nothing but courtesy.

Thankfully the recertification was very quick and Su Jin was able to focus on Sadbh for the rest of the morning.

I changed the batteries in Sadbh’s Cookie Monster toy his morning before I headed out to work. Since the batteries had been dead for a while, Sadbh was not ready for it to come alive when she played with it this morning. It frightened the heck out of her and she went running into Katie’s arms.

She was very cautious the next few times, however she got braver each time.

The nurse that we interviewed last Thursday sat in with Su Jin as a job shadow for a few hours to get to know Sadbh and the lay of the land.

For some strange reason Sadbh was extremely shy and kept hiding behind Su Jin.

We are hoping this new nurse will be available very soon since our daytime nursing coverage at the moment is at around 10%.

Later on Su Jin and Sadbh went out for a walk in the neighborhood and before they arrived back home Sadbh fell into a deep sleep. She ended up sleeping for almost three hours and had to be woken up after Katie and I arrived home shortly after noon.

She had a post-op appointment with Dr. Inglis today so we loaded all her equipment into the car and set off to Children’s hospital.

Her first appointment was with her speech therapist Caryn.

We started off the session by putting Sadbh’s Passy Muir Valve on and for the next ten or so minutes she was as quite as a mouse.

All of a sudden she started yapping like crazy and Caryn was blown away.

She was going to suggest that we schedule speech therapy classes, however after hearing all the words that came out of Sadbh’s mouth she ruled that out and proclaimed that Sadbh was quite advanced in her speech development despite the late start.

She explained that the average child by age two has approximately 10 words, meanwhile at 17 months Sadbh has over 100 baby signs and at least 10 words that she can vocalize while wearing her PMV.

As you could imagine, this was great news for both Katie and I.

Our next visit was with Dr. Inglis and we decided to keep the PMV on. Sadbh was still very chatty and as soon as Dr. Inglis entered the room she got shy again. It did not take more than a few moments for her to come out of her shell and she was yapping like crazy yet again.

We even capped her trach and she lasted for at least three minutes without any problems.

Dr. Inglis was very satisfied with the results and for the first time ever declared without any arm-twisting that Sadbh was making “progress”.

What is not certain is if the progress was due to the Botox, the removal of the granuloma, the natural improvement of her vocal cords or a combination of all of these things.

He encouraged us to start capping her trach more often and for as long as she can tolerate it. This will allow her to get used to the sensation of air passing in and out of her nose and mouth and down through her vocal cords. Her smell and taste senses will also be a new experience for her and she will need to get used to those.

Sadbh tosses and turns like crazy when she sleeps and our latest concern is when she gets tangled up in her cords. On occasion she has been found sleeping with the cord wrapped around her neck as she sleeps. We asked Dr. Inglis if we needed to continue with the nighttime monitoring of her blood oxygen level and he indicated that we could move her away from using it if it would make us feel better. He also explained that given her current status, he felt that if her trach were to fall out she would likely have no problem breathing without it for some time.

This was also very reassuring news and gives us a lot more confidence.

We scheduled another visit with Dr. Inglis for December and another Bronchoscopy and possible Botox treatment in January.

The hope is that we will be able to determine how she manages with the PMV and cap in December when the current Botox treatment has worn off.

This was a great visit and both Katie and I got the morale boost that we have been looking for.

As we were at the nurse counter scheduling the next visits, Sadbh put on a show for the entire team. We can never get out of there in less than twenty minutes, even though they can schedule the appointments in less than five. She is quite the character and entertainer.

After we arrived home it was time for a late lunch for Sadbh and once her belly was full she was stripped off and into her bath.

Katie worked hard to get her to sleep and once she was out it was time for trach care. She awoke just as we were securing her trach ties, but rather than get fussy she played along and allowed us to finish off the job. She is such an angel.

Her evening was spent having as much fun as possible. She was dancing like crazy and she even got to bounce around on Rody her inflatable horse. 

Getting ready for bed was very easy as she was quite tired.  Just before she dozed off to sleep in Katie’s arms, she suddenly sat up, looked at Katie, waved at her and then promptly laid back down and fell asleep.  It was as if she was saying “Goodnight Mommy”.

Larissa is working again tonight so hopefully Sadbh will get another good nights rest.

New photos.

Photos from September 25 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 24th 2012

Sadbh had a wonderful sleep and did not budge all night. Her heart rate was in just under 100 and she did not need to be suctioned whatsoever.

She finally woke up just before 7:30 and was ready to start the day.

The first thing she wanted to do this morning was to rock on her ladybird rocker with all her stuffed animals. It was so funny and at one point she even tried to stick her binky into one of her stuffed cats mouth.

We did not have day nursing coverage today so Katie stayed home in the morning and I took care of the afternoon.

Sadbh was just drying off from her bath when I arrived home and a few minutes later she was fast asleep and ready for trach care.

It was a lot easier today than the previous couple of days and Sadbh slept solid for an hour afterwards.

Sadbh was slightly confused when she woke up and immediately got upset. After a few minutes of cuddling her mood changed for the better and it was off into the kitchen for lunch. She did not have much of an appetite and was more interested in playing with her toys.

Before dinner she was playing with Elmo and could not stop stomping her leg as she danced to his song. It was so funny to watch. Thankfully Katie got it on video.

She had so much energy and when it came time for bed she put up quite the fight. Eventually she gave in and dropped off into a deep sleep very quickly.

New photos.

Photos from September 24 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 23rd 2012

Sadbh woke up just around 2am and joined us in bed for the rest of the night. She really is spoiled when she sleeps in our room.

She woke just before 8 and was full of cuddles and hugs.

All of a sudden she started having a massive coughing fit and it got so bad that she threw up.

I started suctioning her trach and she had some seriously thick, green secretions blocking her airway. It took us a while to get her airway cleared and as soon as we were finished Sadbh gave us a huge smile.

After we got Sadbh all cleaned up it was time to head down for breakfast and to refill her belly.

Right after breakfast she got to Skype with Granddad and Nana back in Cork and as soon as she heard the Skype dial tone she started to make the sign for Granddad.

She had a very playful morning and around noon she started to get tired so we started her trach care ritual.

She was in a deep sleep throughout, however just like yesterday she woke up as we were securing her trach ties.

Since she was awake we loaded up the car and headed out to Alki Beach for a walk.

We were about half way there when she fell into a very deep sleep. Rather than wake her up, we sat in the car for a while to see if she would wake up on her own, but since she did not we headed on for a drive.

She slept for two hours and woke up just as we were pulling up to the house.

With that we headed down to Lake Washington for a stroll so Sadbh could stretch her legs.

She was so happy to be out and about and had the biggest smile on her face. She could not stop checking out all the sailboats in the marina and was also impressed with all the cyclists that went by.

It was a lovely evening and Sadbh was able to burn off a lot of energy.

This evening before best Sadbh was rocking on her lady bird rocker and she wanted to be surrounded by all her stuffed animals and dolls.

It was a funny sight to see and Sadbh was very content.

Sadbh had a lot of secretions throughout the day and had a number of big coughing fits. Just before bedtime she frightened both Katie and myself when she seemed to be choking on something. We were not sure if she had a mucus plug in her trach or what, but her face went red and she was having a very hard time breathing.

I was changing out the suction canisters on both machines as part of the weekly maintenance and fortunately did not have both of them dismantled at the same time. We were able to clear her airway and Sadbh instantly calmed down.

I think both Katie and I lost another ten years as a result.

Audrey is working tonight so we know Sadbh will be in good hands throughout the night and hopefully Katie and I will get some rest.

New photos.

Photos from September 23 2011.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – September 22nd 2012

Sadbh slept much better than expected and despite waking shortly after midnight, Katie was able to coax her back into her cot after a quick nursing.

It wasn’t until 5am before she woke up and needed to be suctioned. She was very goopy and required a lot of suctioning. Initially she was very annoyed and fussy, however after twenty minutes or so she became very playful.

About an hour into it she finally got tired and we were all able to go back to sleep.

A couple of hours later the alarm clock that is Sadbh kicking me in the back started. At least she allowed us both to sleep for a short while before demanding that we awake to give her royal highness nothing but our fullest attention.

Shortly afterwards breakfast was served and Sadbh got to learn a few more baby signs.

We have introduced a few new DVD’s that specialize in sign language in the hope that she can start to learn ASL.

Once she was done with breakfast, it was time for the fun and games to start.

Most of Sadbh’s toys have been stored in the basement for the past while since we were having the house painted. Katie and Sadbh organized her toys and books this morning and Sadbh got to hug each and every one of her stuffed animals. It was impressive how much attention she gave each of them.

Trach care was later than usual but Sadbh was in a deep sleep right up until we were securing her trach ties. We were hoping that she would sleep for a while but since she woke up we decided to head out to Fremont for a stroll.

Turns out that today was the start of the Fremont Oktoberfest and Sadbh could not get enough of the crowds and the music.

It was a perfect day for a stroll and Sadbh got to break in her new shoes. She was styling.

Today was Katie’s birthday so we had dinner planned with a few friends up in Madrona. Unfortunately, all the lady folk were home sick with their kids, but the lads showed up, as did Sadbh’s friend Aidan.

We were able to sit out in the back garden of this nice restaurant and since we were the only ones there, Sadbh and Aidan had the run of the place.

They had a fantastic time and they both got on extremely well. Aidan even mention at one stage that Sadbh was his best friend.

When it came time to leave, Sadbh had no interest in sitting in her stroller. Once we got her in she fell asleep within seconds. She was pooped from a very exciting day and the fact that she only had a 20 minute nap all day.

New photos.

Photos from September 22 2011.

All the best,

Wayne, Birthday Girl Katie and Sadbh.

Sadbh’s update – September 21st, 2012

Sadbh slept upstairs with us last night and by 12:30 she was awake and all tangled up in her cords.

She was very upset and neither one of us got much sleep for the rest of the night.

It was a very rough night and when she wasn’t kicking, tossing and turning, we were trying to get at her trach to suction her.

By 4am we gave her some Tylenol to help soothe her, but it only worked for a short while.

Breakfast was served as soon as Sadbh woke up and she was very excited Uncle Neil and her Nurse Kara when she arrived.

Sadbh had an appointment with her sacral cranial specialist, Dr. Cavanaugh this morning. It went well and with a lot of distractions, Sadbh did not get too fussy.

As soon as they were done, Ali-baba, Kara, Katie and Sadbh headed over to the University Village to buy Sadbh some new shoes.  Sadbh was over the moon in the shoe shop and enjoyed trying on several pairs of shoes before she picked her favorite ones.

Once everyone was home, Sadbh was starting to get tired so it was time for trach care. She slept right through and slept for almost two and a half hours.

By the time Sadbh was done with diner and ready for bed, all three of us were exhausted.

Hopefully Sadbh will sleep better tonight so we can all get some rest.

New photos.

Photos from September 21 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 20th, 2012

Sadbh slept like a log and only woke up for a second at midnight. Realizing that Katie wasn’t in the room, she went back to sleep until 7:20am.

She woke up in a great mood and, as soon as she was dressed. it was time for breakfast and Baby Signing Times.

She had French toast along with a lot of other yummy goodies for breakfast.

I worked from home again today since Sadbh did not have a day nurse and Ali-Baba stopped by to help out with trach care.

It was a very busy morning for Sadbh and she could not sit still for one second. It was exhausting trying to keep up with her, but it was a lot of fun all the same.

When it came time for trach care Sadbh was pooped. Her eyes were rolling in the back of her head, but she still had the energy for a bath. In fact, as Ali-Baba and I talked about trach care, Sadbh started to make the sign for “bath”.

She was very giddy when I poured her bath and she made serious efforts to put as many things into the tub. She succeeded in getting Spud Monkey in, so I had to hang him out to dry in the bathroom.

Trach care was very easy today since she was in such a deep sleep. Unfortunately, she only slept for an hour so it was back up to full speed chasing her around the house.

She seemed to have a large appetite but mostly played with her food. She did devour as much cream cheese as she could and ended up with a load of it on her face and even all over her Passy Muir Valve.

She has been picking up words like crazy the past couple of days and today she kept saying please, more, apple and juice, but not necessarily in that order.

The painter is back working on the living room so we were confined to the breakfast nook and the basement. The afternoon was spent playing with a bunch of her toys that she had forgotten about since they have been in the basement for the past couple of months.

As usual, she got bored and wanted to watch some of her signing DVD’s. Since they are educational I figured it wouldn’t hurt to put them on. She was delighted but soon wanted to read a book or play with another toy instead.

Uncle Andrew and Aunt Erin stopped by for a while and Sadbh was delighted to see them both. She immediately started to do the baby sign for their names and all three of them had a great time playing.

Every time Sadbh would walk by the bathroom she would point and start to make a monkey sound. Initially Andrew was perplexed but then realized that Spud Monkey was still hanging out in the bathroom to dry. It caused a great deal of laughter for everyone, especially when Sadbh kept making the sounds and actions of a monkey.

We met with a potential new day nurse today and thankfully everything went well. She has experience with caring for people with trachs and both she and Sadbh hit it off really well.

We are going to do a test run next week and hopefully everything will work out.

Since Sadbh only had one nap today she was exhausted when it came time for bed. She was very cranky, but she was also very cuddly and full of love. She was giving Katie a huge hug when I walked into her room. As soon as she saw me she reached out to me and once I cuddled in, she wrapped her arms around both of us and would not let go.

What a perfect ending to a perfect day.

We do not have a night nurse tonight so I hope she sleeps well.

New photos.

Photos from September 20 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – September 19th, 2012

Sadbh slept right through the night and was in a deep sleep until almost 8am. Larissa mentioned that she thought Sadbh might have had a nightmare earlier in the night as she got very upset and shot up. Once she opened her eyes and realized that Katie was not there, she lay back down and went right back to sleep.

She was in such a great mood when she woke up and as soon as she saw that I was in her room, she pretended to go back to sleep.  Once I popped my head into her cot her arm shot up and she stuck her binky into my mouth. She had the biggest smile and I figured that this was a fantastic way to start the day.

We don’t have nursing care today so I stayed home to look after Sadbh.

Rather than changing her trach guard to a nose, I decided to start the day off with Sadbh wearing her Passy Muir Valve.

After breakfast we had a game of hide and seek and after a few minutes Sadbh got bored and wanted to eat an apple. She made this obvious as she walked into the kitchen, pointed at the apples and said “apple”. Well there was no way I could turn down that request. She continued to say apple for the next hour or so.

Ali-Baba stopped by to help out with trach care and got to spend a lot of time playing with Sadbh. She had so much energy and seemed to not want to slow down.

Sadbh raided her dresser and tried to put on as many clothes as possible. It was so funny and Ali-Baba was hysterical with laughter.

When it came time for trach care, Sadbh fell asleep very quickly and trach care was quite easy.

Sadbh slept great and did not move for almost two hours. She woke up with a big smile and a bigger appetite.

The afternoon was spent playing with all her toys in the living room and Sadbh was especially fascinated with her earmuffs and could not stop wearing them. Maybe she was sick and tired of listening to me.

When Katie arrived home it was time to head out into the garden to pick fresh tomatoes and pears. Sadbh had a great time playing in the grass and tried to help with the tomatoes. Problem was that she ate more tomatoes than she placed in the bowl.

I forgot to mention last night that as Sadbh ate dinner she could see our neighbor Pat across the drive and as soon as she did she called out “Pat”. She kept saying it while both Katie and I were in shock.

Sadbh was wrecked tired and ended up in bed earlier than expected.

The nursing agency is sending over the nurse supervisor this evening just as Larissa starts her shift. Initially she wanted to come at 5am in the morning without considering that most people are sleeping at this time. After some push back from Katie and myself, she agreed to reschedule for 9:30 and Larissa helped out by coming in 30 minutes earlier than usual.

It’s interesting to think that the agency does not recognize that this is a home and that we try to have a normal existence. The fact that they think they can come and go as they please without any consideration for a sleeping baby or the inconvenience it causes both Katie and me, is ridiculous.

New photos.

A year ago today Sadbh went in for a bronchoscopy and since she had to fast all night, she was one angry little bird. It breaks my heart to revisit those photos, however it is amazing how far she has come in the space of a year.
Part 1: http://baby-sadbh.blogspot.com/2011/09/sadbhs-update-day-161-part-1.html

Part 2: http://baby-sadbh.blogspot.com/2011/09/sadbhs-update-day-161-part-2.html

Photos from September 19 2011.

All the best,

Wayne, Katie and Sadbh.