Happy First Birthday Ben!

I cannot quite believe Ben is a year old! This has been a very hard year. It has had so many highs that were higher than high and lows that were lower than low. The poor little boy has over come so much in the last year, I sometimes wonder how he managed to get through it. As you can see in the pictures it hasn't been an easy road for him.

It seems we are always trading one issue for another. Appointments with one department start to slow down and others pick up and in some cases new departments all together become involved. My hope for him this year is to just have it all slow down. I just want him to have more home time and normal time than hospital time.

One year ago our lives changed. Little Ben gave us all a wake up call to what is really important and just how many things we all take for granted. As hard as it has been I wouldn't trade it for anything. He is a wonderful and very happy little boy and no matter what happens we will all figure it out together as we go along.

Fingers crossed this next year will be easier for him.


HAPPY BIRTHDAY BEN!!!! We love you!!!

Walking 2

Ben walking 1

Kids in a box

Thoughts and Prayers for my Grandmother....

Today my grandmother fell. She was walking from her kitchen to her living room, caught her toe on a stool and fell.  She scraped her left arm pretty badly and landed on her left hip. Luckily she had one of the medical pendants you wear and just have to push a button to get help. The service dispatched an ambulance for her. She was in a lot of pain and very teary when they arrived.

After getting to hospital her arm was bandaged and the X-ray of her hip showed a fracture. She was admitted to the surgical unit and will be having surgery tomorrow morning. Tonight she will be spending the night in the step down unit on surgical.

I would appreciate tremendously any positive thoughts and prayers that could be sent her way. This is a tough time for her. It was 8 years ago today my grandfather was admitted and he never made it home, passing away early in the new year. While she will be home in 5-7 days we all know this is on her mind. To be honest, at 89 years old, I think it is a worry we all have.

I hope to update this soon however it will depend on how the next few days play out. We all just have to have a little faith.

Thanks to you all for the kind thoughts and prayers, albeit in advance.

The unforgettable gift..

The unforgettable gift was a blog post today from the IWK health center foundation.

http://iwkfoundation.wordpress.com/2012/12/07/an-unforgettable-gift


This made me cry...seriously it speaks for itself.

Can you hear me now???

Today we were back at the IWK. I honestly can't handle it in there this time of year. It was cold, a few flurries in the air and the place was decorated for Christmas. It brought back a million memories from this time last year, that I have yet to deal with.

We were an add on for Dr. Hong in the ENT clinic. Ben's eardrum had gone again and was seeping nasty smelling/looking fluid. The ear drops he  has been on haven't been doing much if anything and I was concerned.

Dr. Hong was happy to see us. Ben's eardrum was indeed still open and badly infected. It needed to be cleaned and suctioned out and have the drops put in. The new plan of action seems to be back where we were and have tubes placed to be on the safe side. This will be done when we are in for the palate repair. Between now and then it will mean (at the least) weekly visits to clean and monitor his ear.

Surgery has been scheduled and will be sometime in late January or early February, with the preop before that. While this is good news that Christmas won't be an issue, the fact I will be here alone becomes a bit of one for me.

Once Ben had his ear suctioned, he was angry but far more comfortable. He even had a smile for Dr. Hong when he asked him "Can you hear me now?"

Lets hope the surgery papers are in the post soon so I can start making plans!

Nutcracker Weekend....

This was Nutcracker weekend...While the show was fantastic, I must admit I am glad it is over for now. It was a VERY long weekend. 

Friday night Victoria started feeling unwell and just before curtain Saturday night became violently ill. The poor kid was throwing up ever 10-30 minutes the entire show!

To be honest I didn't think she was going to be able to go on. She was pretty clear she was under no circumstances going home and she was going to dance.

It took some doing but we managed to get her cleaned up and with only about 1.5 minutes before her cue to dance got her in her costume. Luckily her make up for soldiers was on before she got ill so it was easy to fix up.

You can see from the picture she wasn`t feeling too well on stage. (She is the soldier on the right)

After the first dance she was pretty ill for a while. We spent quite a while outside in the bitter cold. Once she had recovered a bit, we went upstairs to have her makeup for Chinese sprayed on. Moving her head made the dizziness worse and we headed back outside. Once again we had to do the last minute costume change. We headed to makeup for a touch up of her mouth and nose area a few times. She made it on stage and did really well. She didn`t miss a cue.

On top of everything else her costume tights were too big and kept slipping way down. She felt miserable and just wanted to go home to take some travel sick medication and go to bed. She made the final curtain call and the grand finale. However she barely made it back to the dressing room. The poor kid took a long time to be able to get out to the car.

She still wasn`t feeling herself Sunday. She still felt miserable. We had given her medication but she still felt ill. She made it through the performance without being sick but she felt miserable.

Even today she didn`t feel great for school. Still I am very proud of her for dancing even though she was sick.

Good job Victoria.

Benny Bear!

Extra cute and extra warm. All ready to go out in the snow with big brother and sister.

X Factor Overload.

 Today is an inservice/parent teacher meetings so that means no school for the students. Last night Victoria BEGGED me to stay up past her bedtime to watch the complete episode of X Factor.

Clearly CeCe Frey's performance bored her to death. Guess Cowell's prediction to pack a suitcase may be a good one? In all honestly the kid has been practicing non stop for this weekends performance of the Nutcracker. I even caught her using a paper towel roll to act out her part in the fight scene the other day! Tickets are almost gone so if you did want one let me know ASAP so I can see what I can do for you!

Anyway poor kid was on X Factor overload, none the less.

Guess I will have to tape the results tonight for her to watch tomorrow after school lol.

Did you know?

An alternative use for Nanny's Christmas table runner is as a hat for Benjamin!

True story!

Snowball Fun

First Snow of the Season!

 Harry was so excited to see the snow. We stayed at my parents last night, since we stayed late for their Christmas Party. Unfortunately, Harrison's boots didn't fit from last winter but we managed to find an old pink pair of Victoria's so he could go play for a bit.

Our Week In Review....

I'm about as impressed as Ben looks.

It really and truly has been one of "those" weeks. To be fair it has been more than a week but my patients and sanity have been tested none the less.

It all started with Victoria coming home with a NASTY cold. It lasted for about a week, but her throat was so sore she could hardly swallow. Harry was the next to get sick. He was worse than his sister with a high fever and refusing to eat or drink. After the cold seemed to start letting up the poor kid ended up with chicken pox! He (and I ) were miserable! He would bring me the tube of anti itch cream and say "mama fix it." Oh how I wish I could have.

Once Harry was well on the mend, Ben ended up with the cold. PRS and a cold is never a good mix. Even though Ben has had his jaw corrected he still gets pretty sick with any normal childhood thing. His cold and fever held on for days. He refused to eat, he wouldn't drink and even getting his medications in him were a challenge. He was having trouble breathing and went back to sleeping on his front for a few days.

As I am sure you are all aware Ben has struggled with his weight gain. We hit another plateau in the summer and really struggled to snap him out of it. Finally between August and the first of November he was back where he needed to be. This illness however had his weight drop back below what it was in the end of August. I am so frustrated! Despite syringe feeds and to ups with water and Pedialyte he struggles. I feel like I should be doing more but have no idea what.

He was miserable for days, the Saturday things went from bad to worse. He awoke screaming. He started holding his ear and we were off to the ER. Unfortunately it was too late, his ear drum had perforated. This is common in cleft and PRS kids due to the inability for fluid build up to drain. The doctor assured me that there was nothing more I could have done, but I still feel like dirt over it. The doctor told us that depending on where the perforation was it is most likely a good thing as it will make him more comfortable and give the antibiotics a chance to work. The bad news is he could not see the perforation. This means more follow up with Dr. Hong at the IWK, and keeping our fingers crossed it won't affect his long term hearing. Again frustrated.

Things are looking up and we are almost a week into the antibiotic. He still isn't himself but is doing better at least.

Lets hope this week is a better one!

FYI

If you mistype "I left you a message" on an IPhone, the auto correct turns it into "I left you arms of sage".

Strange yet I found this inexplicably hilarious!

The Art of Peekaboo

Where is Ben?

You can't see me!

Here I am!

 Peek!

Uh oh I'm gone again...

Where did I go?

Peek!!!

May I help you?

Harry Dancing

We Will Not Forget...

Benny Bean!!

Don't I look great??

Happy Birthday

Happy Birthday To my Grandmother! She is turning 89 today!

Clinic Day

Today was our marathon clinic day with Ben at the IWK. Overall the doctors are very pleased with how well Benjamin has been doing as of late.

Plastics/Cleft Palate team was our first stop. Ben has gained weight and grown well. The surgeon is happy to proceed with his palate closure. The wide u shaped cleft has narrowed and they feel that now is the time to act. Dr. Bezhuly is arranging a preadmission visit and scheduling the surgery for right away. The way he is talking I am thinking between now and by the end of January at the latest.

ENT was next. Dr. Hong was please with his ears. Both ears were free of fluid and no signs of infection. All of Ben's hearing screens have come back excellent and he has only had a few infections. Over all Dr. Hong thinks we will be able to avoid having tubes placed. As long as Ben's next hearing screen is clear, and we can avoid infections we should be okay. The plan is still to have a really good look in his ears when he is under anesthetic for his palate repair and decide then. Regardless he will clean out Ben's ears on the day of surgery. Fingers crossed.

Today we met Ben's pediatric dentist. It really wasn't anything more than an introduction and how the dentistry/orthodontic service will be involved with Ben in the years to come. His (2) teeth are fine, which we figured they would be. We were prepared about the issues with a cleft palate and teeth. Then with the complications of the jaw distraction surgery and his teeth. There will be involvement from a pediatric orthodontist prior to his third birthday. All issues will be seen to right away. Again the talk was around surgeries that will be coming up over the next decades until he reaches adulthood. In the end he will have the best set of teeth around I'd bet!

It was hard to be back in the hospital for that long. I have made it a point to make sure I am in and out when I go by myself. Today where Ash and I were there together and we had Harrison it really brought the past year. It has brought the reality of being back in the hospital with Ben again...and reliving it all over again. The fact we are going into Christmas doesn't help and just brings EVERYTHING back!

Here we go again....Sigh