Sadbh's update - day 149

Sadbh was up extremely early this morning. It's almost like she knew that we were returning home and she was ready to go from the the crack of dawn.

She was in such a playful mood, you could not help but play along.

It took almost three hours to package everything up and get the car loaded for the trip home. 

We figured the best time to hit the road was when she would be ready for her next nap. Unfortunately, this didn't work our according to plan. I seems that we actually had Princess Angry Bird with us in the car, at least for the first ten minutes or so. Eventually, Sadbh calmed down and fell asleep.

The drive home was quiet good, no traffic delays, and the weather was perfect. Just as we were about to hit Interstate 90, I pulled in to fill the car up with petrol. During this pit stop, we discovered that Sadbh had a fairly decent diaper blow out that required a complete overhaul in the parking lot of the Cle Elum Safeway.

From there it was a quick drive home and back to her cozy little bedroom. 

All in all, it was a great trip that definitely pushed Katie and my comfort levels to newer and better heights.We proved to ourselves that we can overcome the fear of not being able to travel with Sadbh and all her baggage, and that we can have a great time as a family while doing so.

New photos.

Photos from July 7th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 148

Tuesday was another relaxing day in the sun. 

Sadbh spent a lot of time hanging out with Clodagh and Dylan by the pool, and despite the age difference, Sadbh was fascinated by the older kids.

Trach care was very easy today, I think all the playtime with her friends wore her out, so when it came time to nap, she fell into a very deep sleep, allowing us to get things done easily and quickly. 

Later that evening, Sadbh decided that she wanted to join the adults for dinner, so she got to spend time hanging out on the deck while enjoying the nice warm evening atmosphere. 

New photos.

Photos from July 6th.

July 6th was a difficult day for Katie and I since we had learned that Sadbh's vocal cords had not improved from the previous visit. Our next visit with ENT is less than two weeks from now, and we are hoping that the news next time will be more promising.

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 147

Lounging poolside is always a great way to spend a Monday.

Fortunately the house that we are staying at has a couple of nice large fir trees that provides ample shade so the kids can hang out without the fear of getting sun burned. 

Despite this, Sadbh still wore her sun glasses to protect her eyes. Although, I think she wore them because she is so cool.

Throughout the last few days, Sadbh's blood oxygen level has been periodically hovering in the low 90's. After some online research, Katie discovered that if Sadbh's feet are cold, the oximeter sensor could potentially pick up a lower than normal reading.

With that, we placed nice warm socks on Sadbh and her oximeter reading jumped up to 100 almost instantly.

New photos.

Photos from July 5th.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 146

During breakfast today, we had Sadbh sitting in her bassonett on the kitchen table. She was extremely interested in what was going on around her, so we gently supported her as she tried to keep sitting upright. 

It was a good workout for her, and it was fun to see how determined she was to stay up.

The rest of the day was extremely relaxing and I got to spend most of the day hanging out and playing with Sadbh, as the ladies went into town to get groceries and so forth.

Her nap times are definitely getting shorter, and more spread out. She also gets bored very quickly, so you have to be constantly on the go to make sure she is entertained and engaged.

I can't even imagine what's going on in her brain, she seems to be soaking everything in.

New photos.

Photos from July 4th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 145

Sadbh had an excellent nights sleep on her first night away from home.

We had a very easy morning, just lying in bed and playing with Sadbh. 

After breakfast, I found the two ladies hanging out in the sun by the pool. Sadbh is really getting used to the good life.

As she was awake for a couple of hours, we figured it would be best to manage trach care when she would be ready for her next nap.

Despite working out of a makeshift sterile medical room, trach care went surprisingly well. I suppose, being as organized and prepared as we were, it all paid off.

The rest of the day was spent hanging out with the gang, and Sadbh got to spend timing hanging out with Cormac, Conor, Dylan and Clodagh. 

I have to admit, we have a great group of friends, and we are extremely fortunate to get to spend the weekend away in such great company.

Every day brings on new learnings for our Sadbh. Lately we have noticed that her hand coordination is developing quite well. She is quite inquisitive and wants to touch and grab everything. 

She really has a lot of strength in those little arms. 

New photos.

Photos fromJuly 3rd.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 144

Since we didn't have nursing care Thursday night, Sadbh got to sleep in with Katie well after the day nurse arrived.

Since both Sadbh and Katie are still fighting the remains of a cold or something, it was a great excuse to sleep in and try to beat whatever it is that is bothering them.

Around noon, Ali-Baba came over to spend time with Sadbh and was very helpful with trach care.

They even got to dress Sadbh up in her Kimino outfit that she received from her uncle Yuki in Japan.

I've said it before and I'll say it again, we are so lucky that Peggy lives so close and is so helpful with our little girl.

While Sadbh took her afternoon nap, the sun was shining on her face through a crack in the blind. Since we could not adjust the blind any further, I got creative with a couple of her stuffed toys and used them as a sun screen. 

Our friends rented a house in Lake Chelan, which is approximately 180 miles away from Seattle, and invited us to joint them for a long weekend. 

Initially the idea didn't sit well with either of us, due to all the equipment and being so far away if something went wrong.

However, since both of us love to travel, we figured that we should go on this trip and push our comfort level to brand new heights.

Typically, the time taken to get ready for a road trip, might be two or three hours max.The time taken to package extra medical supplies, back up equipment parts, and pack the car was 8 hours over two days.

We were originally nervous of how Sadbh would do with long drive. It took our friends over four hours to reach the destination, so we decided to leave Seattle later in the evening in the hope that traffic would have died down by then. We were both very impressed with the fact that she slept the whole way without any issues.

We were also fortunate that traffic was great and it only took us three hours to get there.

Once arrived, our friends quickly helped us unload the car and I was able to set about getting all of Sadbhs equipment set up in her new room.

Everything looked great until we realized that the house was old and the room did not have any three pronged electrical outlets. Not good, since every single piece of her equipment needs to be grounded and requires a three pronged outlet.

After a little bit of a scramble, and after searching the house, Fayee found an adapter. I was able to "MacGyver" the adapter and get everything powered up. I'm positive it doesn't meet electrical code, but it's working for now.

It took almost an hour to get everything set up and once accomplished, it was time for Sadbh to feed and go to bed.

She was extremely interested in her new surroundings, but did not have any problems getting settled in and falling to sleep.

New photos.

Photos from July 2nd.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh's update - day 143

Sadbh must have been fighting something today as she was a lot quieter than usual and was extremely clingy. We don't think that it's anything too serious as her temperature and heart rate seem normal and the only indication that there is something wrong is that she seems quite lethargic. 

Katie is also fighting something, so hopefully they are both on the winning side of things and will be able to shake off whatever it is as soon as possible.

Our nursing situation had greatly improved during the last month or so, however this week it seems that things might end up being rocky for a few weeks. 

One of our regular nurses has gone on leave to care for a family member, and we have also been left without coverage twice this week, tonight being one of those shifts. 

New photos.

Photos from July 1st. & Part two.

Have a good evening,

Wayne, Katie and Sadbh.