Sadbh’s update – June 11th 2014

Helen could not work last night so I spent the night with Sadbh. She did great but we were unable to cap as I was too tired and did not want her to go into distress if I fell asleep while keeping an eye on her.

She slept in until shortly after 8 and woke up happy. We had a great morning but since we are still having work done on the house we were house bound for the day.

Sadbh was definitely bored at times and really wanted to get out. After the contractors left we went out in the garden for a while.

After dinner we took care of trach care and then it was off to bed.

I felt bad that her day was confined to the house. The contractor is supposed to finish early tomorrow so I’m hoping we will get to head out for a walk after I’ve cleaned the house.

We received word today that Sadbh’s primary insurance company, UHC, has reinstated Sadbh’s 16 hours home care nursing coverage per day.

This is such a relief, however the fight with her secondary insurance continues.

New photos.

Photos from June 11 2011.

Photos from June 11 2012.

Photos from June 11 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 10th 2014

Sadbh had a good night but got up shortly before midnight. I think she was actually sleepwalking but I was able to get her back down and off to sleep without waking her up.

She woke up in a great mood and poked her head over her bed rail to see if I was next to her. I was wide-awake and as soon as she saw me she gave me the biggest smile and grabbed my hand.

We had a couple of contractors in the house today working on the bathroom so Sadbh and I were house bound for the most part. She was very interested in what was going on and was very friendly to the two workers.

Usually Sadbh does not get to play with her toys in the morning as we spend that time learning and doing arts and crafts. Unfortunately I forgot to put all her toys into the basement last night so first thing this morning Sadbh found all her ponies and dolls. Since there was no hope in taking the toys from her I had a chat explaining that she had to follow the rules and do everything that was asked of her, if she did not then she would lose all her toy privileges for the remainder of the day.

After my lecture, Katie heard Sadbh talking to her pony, Pinkie Pie, saying, “daddy is a meanie pants”. When Katie asked what she had said, Sadbh explained that it was Pinkie Pie who had said it.

We spent the morning learning the alphabet, going over the months and days and painting. In the afternoon we headed out for a nice walk but Sadbh got lazy a few blocks in and insisted on climbing into her stroller.

Traffic was a nightmare this evening so Katie was much later than usual getting home. Sadbh was delighted to see her but the evening was short and before she knew what time it was we were getting ready for trach care and bed.

New photos.

Photos from June 10 2011.

Photos from June 10 2012.

Photos from June 10 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 9th 2014

Sadbh slept great but only had her trach capped for a couple of hours. She slept until half past seven and woke up in an excellent mood. She could not wait to get out of bed and upstairs to see Mommy.

We had a very relaxing morning and shortly after Mommy left for work uncle Andrew dropped by. Sadbh was happy to see him and was eager to show off her beautiful princess dress.

Later in the morning we headed out for a walk through the neighborhood and ended up at Nora’s Woods.

The woods were full of sounds from birds singing and squirrels playing, or fighting, or whatever. Sadbh was intrigued but also very cautious and did not want to go too far on her own.

We were both fairly tired when we arrived home so after a snack we headed up to bed for a nap. An hour and a half later Sadbh woke up with a huge smile and feeling well rested.

Later in the evening I gave her another treat for wearing her trach cap at night. It was the latest addition to her growing collection of Ponies, Flutter Shy. Sadbh was thrilled and could not wait to introduce her to the other ponies.

After dinner Katie and I got Sadbh ready for trach care. She was very cooperative and we were able to get it done in less than ten minutes.

Once finished it was time for bed and Sadbh was fast asleep within half an hour.

Unfortunately Helen called in sick tonight so I will spend the night next to Sadbh. It’s doubtful that I will cap her trach for long though so we can both get some rest.

New photos.

Photos from June 9 2011.

Photos from June 9 2012.

Photos from June 9 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 8th 2014

Sadbh slept great but only managed to wear her trach cap for a couple of hours.

She woke up early again and was over the moon when Mommy popped her head in the door of her room. She missed Katie so much over the last few days and spent the morning snuggling and catching up.

We had trach change scheduled for earlier in the week but since Katie was out of town we rescheduled for today. Lately Sadbh does not like having her trach changed so Katie did a great job talking to her about it and getting her to agree to let us do it. Unfortunately, when it came time to change out her trach she would not let us near her and kept blocking her neck with her chin. It was a stressful time and after an hour or so of serious negotiations we were able to lull her to sleep.

We had her hooked up to her oximeter so as soon as her heart rate dropped into the high eighties we got ready to change it out. Sadbh was very calm and restful so on the count of three Katie pulled the old trach out and I went to put the new one in. It would not go in the whole way and with that Sadbh woke up, pushed down with her chin and blocked her neck. I had to grab her head and push it back while pushing the trach in all the way. It was a gut wrenching moment for us all but we were able to clear her air way and get finished up.

The rest of the day was fun and Sadbh had a play date with Clodagh, Cormac and Aidan later in the evening. She was delighted to see her friends and really happy to get lost in all the toys in Clodagh and Cormac’s room.

Bedtime was easy tonight as Sadbh was completely wiped out.

New photos.

Photos from June 8 2011.

Photos from June 8 2012.

Photos from June 8 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 7th 2014

Sadbh was up bright and early this morning. Danielle managed to cap her trach for over four hours, however when she tried at 6:15 Sadbh had enough and decided it was time to get up.

As a result it was a very long day for the both of us since Sadbh had no interest in napping whatsoever.

Regardless, Sadbh and I had a fun day. Ali-Baba came by in the late morning to help with trach care and to read a couple of stories to Sadbh.

Later we both headed out for a walk up to Capitol Hill and decided to stop off at Café Presse for a bite to eat. Sadbh was on her best behavior and we both enjoyed our dinner date.
Just before leaving Sadbh asked to go to potty. I was nervous leaving all the equipment and my camera in the restaurant but when nature calls it cannot be ignored. 
I brought Sadbh into the mens room and held her over the toilet to go pee. All of a sudden there was a big "toot" and she turned around and told me that she was finished. Classy lady, doesn't want to fart in the restaurant in front of other diners. 

We made it home in time to watch Frozen and Sadbh was in her element. She sang along to all the songs and she was over the moon when I brought her a big bowl of ice cream.

Bedtime was a little later than usual but Sadbh fell fast asleep in no time at all. She has been looking forward to Mommy coming home and just before she fell asleep I told her that while she is dreaming tonight that she should expect a big kiss from Mommy when she gets home.

New photos.

Photos from June 7 2011.

Photos from June 7 2012.

Photos from June 7 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 6th 2014

Sadbh slept in until close to 8 and woke up in a great mood. She had a wonderful night sleep and Helen was able to cap her trach for four hours.

I found a spider crawling along the wall close to Sadbh’s bed this morning before she woke up and was able to capture it in a glass to show her later. She was fascinated by it and after showing it to Mommy via Skype and Ali-Baba later on we were able to release it in the garden.

Ali-Baba came by later in the morning to play with Sadbh and help with trach care.

The weather was beautiful so we loaded up Sadbh’s red wagon and headed off down the street to the park.

Sadbh was having a good time on the slides when she was joined by three kids close in age to her. The quickly made friends and soon they were all having a wonderful time playing on the playground.

As soon as we got home it was time to have a bath and then trach care. Sadbh looked tired but she did not want to slow down.

She had a busy afternoon and performed trach care on me while making a huge mess.

Sadbh did not want to go for a walk in the afternoon but eventually I was able to convince her. Unfortunately for me it required the red wagon and her royal highness being pulled all around the neighborhood. After an hour I was exhausted but it was all worthwhile as Sadbh got to enjoy being outside.

Dinnertime was not so much fun as Sadbh refused to sit and eat. It took almost two hours before she ate and by the time she was done she was after running out of time to watch Frozen. She was very upset but it was obvious that she was beyond tired so I quickly got her ready for bed.

She was out in less than a minute so I was able to cap her trach without any difficulty.

Hopefully she will have another good night sleep and will sleep in tomorrow morning.

New photos.

Photos from June 6 2011.

Photos from June 6 2012.

Photos from June 6 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – June 5th 2014

Sadbh did great last night and managed almost five hours with her trach capped. She woke up not long after Helen left and was in a good mood.

Our morning started off rocky and Sadbh really pushed me to the limits of my patience.

Later in the morning Ali-Baba stopped by to hang out and help with trach care. We got trach care out of the way and straight afterwards the three of us had a tea party. It was quite the affair and we each had to quietly sip our tea with our pinkies extended for show.

After Ali-Baba left Sadbh and I had a good chat about how important it is for the both of us to get along and what we had to do to make sure we kept each other happy. I also told her about the plan I had for the evening as long as she behaved and did what she was told.

The rest of the day was great and Sadbh did a fantastic job at being good. There were a couple of times where she would start to throw a tantrum and all of a sudden she would stop, smile, give me a huge hug and say “I love you daddy”. It was obvious that she was doing her best to tow the line and to get her treat.

Her treat for the evening was a trip to the local cinema for an hour and a half of cartoons with popcorn followed with pizza. She was in heaven and was grinning from ear to ear. When we got home she gobbled down a bowl of ice cream followed with a reading from her new favorite book, Frozen while listening to the movie sound track.

Thankfully bedtime was easy tonight and I was able to slip Sadbh’s trach cap on shortly after she fell asleep.

We received an update from Sadbh’s primary insurance company today that they are going to reverse their decision for declining home care nursing. This was great news however they are reducing the coverage from 16 hours a day to 10. Our attorney advised us to hold our ground on the 16 hours coverage so we are not out of the woods yet.

New photos.

Photos from June 5 2011.

Photos from June 5 2012.

Photos from June 5 2013.

All the best,

Wayne, Katie and Sadbh.