It’s not always about milestones and successes

Lately, I have shared with you some older blog posts and some more recent success stories.

Most of the blog activities and facebook pages for kids with Cri du Chat syndrome are about the little ones.Β  Not many are about teenagers or young adults, I am an anomaly…

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This morning, we went shoes and clothes shopping and got lots of new items for Emily!

We went for a late breakfast after all the shopping!

When our plates arrived, I did what I always do.Β  I set my plate aside and started to fix-up hers.Β  I started by cutting all the fruits in bite-size pieces, moved the smoked salmon aside, cut her bagels in manageable pieces, added the salmon back on top, moved the red onions and capers to the side, cut the tomatoes…

My food was lukewarm by the time I was ready to eat.Β  I’ve been eating lukewarm to cold food for 17 years now… It taste good.Β  Actually, I can’t eat hot food or drink hot coffee anymore!

As we ate, Emily started talking about her upcoming blog and what she would like to talk about than reminded me that I promised to write about her love of the Paw Patrol tv show…

If you have little ones and still don’t know about the Paw PatrolΒ  You need to check it out as theyΒ  will soon invade your house!

If you have a sense of humor, you should read this post that appeared in my facebook feed earlier this week.Β  Click HERE!

Meanwhile, my 17 year old daughter loves those puppies and spent months asking us to go to all the stores in town to find an Everest to add to her collection.

We didn’t find Everest but eventually found this kit!


These figurines come with their pup packs and she got the silly chicken and cute cat too!

Emily was so happy to have them all now and obviously, if we were only missing Everest… you can assume that we have doubles…

Each dog has been matched with a princess, each match was made for a really specific reason.

Jon and I keep moving the princesses and dogs around just for fun.Β  It takes Emily seconds to realize that her toys have been moved πŸ™‚Β  She continues to fix them up.Β  It’s amazing how she notices instantly when we do that.

Those figurines aren’t the only Paw Patrol puppies we have in the house.

Emily has manyΒ Webkinz so she picked 7 and named them after the Paw Patrol.Β  Those resides on her headboard.

Emily also have the pretend Paw Patrol puppies living with us.

Emily has a big pretend world!

Our house is full of so many pretend friends!

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If you like to read about Emily and would like timely updates of little and big things happening in her life, you should follow Lessons from my daughter‘s page on Facebook.Β  This is where I post tidbits of information before I have time to write a proper blog post.Β  Some stories might never get a full blog post!Β  Join us there too!

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

You can also find me on Twitter at @plebrass

I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter

 

When tenacity becomes stubbornness

Like mother like daughter….

On a good day, Emily is determined or tenacious! On a bad day, she is pigheaded, inflexible or stubborn!!!

Just like me!!! Her dad is like that too but it’s my blog so I will take responsibility!

All 5 words, determined, tenacious, pigheaded, inflexible and stubborn are synonyms… the first 2 have a positive vibe while the last 3 makes you think about a difficult child!

All 5 words are the same!

A strength (determination) over used becomes a weakness! This is true at all ages!

When looking at Emily, I know that her determination helped her learn to walk, talk, eat on her own and do so many other things.

Her inflexibility have made her stomp her foot in the middle of a store when she thought a dress my mom and I liked was hideous!

πŸ™‚ My daughter!!!

October 2001, Emily is just over 3 years old when the daycare informed us that one of the little boy had meningitis… All the kids had to take a preventative antibiotic.

The syrup was disgusting…. I’ve always tasted (still do) everything before I give it to Emily so I am better prepared for her reaction!

As I suspected, Emily hated it and decided that she would not take it!

As a baby, Emily had issues swallowing and choked a lot. She developed an amazing ability to remove whatever was blocking her air ways on her own. My baby would start suffocating and could loosen up / vomit on demand…. still can!

At 3, we couldn’t really discuss with her the importance of keeping that syrup in. We got more from the pharmacist and kept trying to give it to her….in juice, yogurt, fruits, pudding and more… We tried many times and she made herself vomit every single time…

She is one stubborn child!

The pharmacist wasn’t selling us anymore antibiotics… he seemed to not believe in Emily’s ability to detect the antibiotic in food and expulsed it…..

We had to take Emily to the hospital as we were getting nervous about her not getting the benefit of the antibiotics as well as not keeping food or liquid in her body.

We went to the hospital 3 days in a row.

The first 2 days we were sent home after being looked at like over reacting parents…

On the third day, I packed for an over night stay for all 3 of us.

We got to the hospital, explained (once again) that Emily was exposed to meningitis, that she refused to take the antibiotics and that she stopped eating and drinking. She was not herself, she was dangerously dehydrated…

Again, we were judged by the nurses and labeled as over reacting parents.

But this time the nurses tried to get a urine sample and got nothing.

The bag they glued onto Emily stayed empty long enough for them to slightly panic and decide to go in with a little tube to collect a sample straight from her bladder. When that didn’t work, the nurses went on full alert. Emily was dehydrated, she needed to be transferred to another hospital. They wanted to put her in an ambulance while we were to go home to get personal items.

Yeah right, I wasn’t leaving my girl.

We told them not to worry about us, that we had our backpacks in the car and that all they had to do was call the hospital that we would drive there.

When we got to the next hospital, they were waiting for us.

Emily was put in isolation because of the meningitis exposure.

They needed to install an  IV to hydrate Emily.  She was a tiny 3 year old.

They had the audacity to ask me to hold her while they were trying to put that needle in her. I refused. I refused to be the one holding her down while they were hurting her. I was and will always be the one comforting her, not the one holding her down!

They poked her multiple times before finally installing the IV on her wrist.

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I had told them not to touch her right hand, that she needed to suck on her finger to fall asleep but they didn’t listen to me.

I noticed bandages around both of her wrists and ask what they were for..

They planned on attaching her to the sides of the bed at night so she wouldn’t roll on her IV…

That’s when I became determined, tenacious, pigheaded, inflexible and stubborn… all at once!

There was no way they were going to do that.

They took away her right hand and wanted to have her lay still at night while being attached to her bed…

Anyone else see something wrong with that picture???

I stayed awake all night, holding her left hand and hoping she would fall asleep.

I did that for all the nights we spent there and would have done it for many more.

We spent Halloween at the hospital, nurses and volunteers were disguised and brought us some items to help Emily dress-up.  By this time she was no longer being kept in isolation so we pushed her around in a high chair (she wasn’t walking yet) and let her collect candies she couldn’t yet eat.  We allowed her a sucker which made her sick, this showed us she wasn’t ready to be off the IV and come home.

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She eventually got better and we went home!

Like mother like daughter!

On a good day, Emily and I are determined and tenacious! On a bad day, we are pigheaded, inflexible and stubborn!!!

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I am so very proud of that because when she drives me crazy, all I have to do is think about her ability to walk, talk and do so many other things…. that ability came from her determination and tenacity.
Can you recognize an over used strength in your kids?

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If you like to read about Emily and would like timely updates of little and big things happening in her life, you should follow Lessons from my daughter‘s page on Facebook.  This is where I post tidbits of information before I have time to write a proper blog post.  Some stories might never get a full blog post!  Join us there too!

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

You can also find me on Twitter at @plebrass

I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter