Ashley 's Home

That was her third trip to Sickkids emergency this month.  It was her shortest stay.  The doctors and nurses are starting to recognize us as nice as that is it's not a good thing.   Ashley was sent home with Ventalin for an inhaler and a steroid called Prednisolone this medication they use to treat asthma which we knew Ashley doesn't have. She has tight airways and is going into respiratory distress just from a viral infection which appears as a head cold with lots of coughing.  Her chest x-ray didn't look to bad they said she had improved from the x-ray 2 weeks which showed pneumonia.   She's in rough shape when she starts coughing.  Today I  gave  her all the meds even the inhaler which was given on an as needed basis.  When she couldn't stop coughing this evening I pulled it out.

I noticed that the prednisolone has a side effect of insomnia .. not a good one for a little girl who bad needs to rest and recover she only fell asleep at midnight.  She was bathed in bed at eight read books and I checked on many times until finally feel asleep at midnight.  Very unusual for her .. she didn't seem upset to be awake she was sitting up and reading her books.  Mommy just really wanted her to be resting.

I hope tomorrow the coughing will let up. I cancelled the sears photo trip tomorrow but the boys and i put up one of our trees in the living room.  I'll attempt to take my own photo for this years christmas cards by the tree.   I'm sure it won't be as nice as sears.. I don't even have co-ordinating clothing for them to wear. Oh well I know they will still look cute. I hope I can get at least 2 out of 4 smiling.

your sick when ...

Your nail beds are blue.
Your respiration rate is 50 and your sleeping.
Coughing fits are frequent.

It was a rough night. She is feeling better thanks to steroids. We are back in the hospital 3rd time this month.

I hope all this will end soon. We are suppose to get the kids Christmas photo taken at sears on Saturday.
-- Post From My iPod
Sherry

Relentless - Ashley fighting off another bug

My little girl is still sick she has an ear and sinus infection and possible pneumonia. She had too many chest x rays in the last few weeks so her doctor thought he would just treat her and if she doesn't respond or gets worse we are to head to the hospital.  I pray she gets better soon she has been missing lots of school i think she been only once since  October 23rd and November is almost over.

On a more exciting note we went shopping for some furniture for her and found this beautiful sleigh bed.  It is   Isabella furniture by Young America unfortunately not Canadian but lovely.  I picked up some soft and cozy pink side rails from Toys r us the other week too . We are also going to  order her a dresser,  mirror and  night stand.  I can't wait to see it all set up and Taylor in his crib.

Santa Baby

These cheeks are getting bigger everyday!

 Taylor and James

Advocacy

This girl is worth it!

Earlier this month when I was busy caring for Ashley in the hospital while she was fighting  H1N1 and the nasty side effects.    A number of services Ashley receives from CCAC (Community Care Access Centre) or our government came in question. Such as why does Ashley need to receive the level of physiotherapy?  She gets 20 visit every six months currently and has been for a while now.   Her  case manager thought perhaps Ashley should get 10 visits every 12 months like less then one a month.

CCAC also believes it would be better for  Ashley's CME therapist to  be  teaching me how do physio with Ashley ?   Rather then do weekly treatment.  You see Ashley has a new case manager since Ashley started school who doesn't understand how CME therapy benefits Ashley.  Or  how taking this away would put her at risk of not reaching per potential to walk.

 I have no idea what would give them such an idea.  Obviously this case manager does not understand CME therapy, have a child that does not walk, or think I'm super human and if I could be Ashley's Mom and her CME therapist I would but  I'm NOT!!  Ashley's CME therapist that is provided by CCAC is one of the absolute best and is determined to see that Ashley is walking as her mode of transportation. This is a a hugh goal that Ashley has made tremendous gains with thanks to her help as well as Ashley private therapist help.

Ashley has been seeing these 2 therapist weekly since she was less then one year old.  It is expensive therapy and worth every penny we have spent on this privately.  The government is under pressure because there is not enough therapist or funding to provide adequate help to everyone.  Which is really too bad  however my child is making developmental gain that will lead her to live a much more independent and happy live. It is critical now that she continues to receive the same level of therapy in order to reach her walking goal we have been working on this for 4 years now.  She is getting closer and closer every day so now is not the time to make these kind of changes. What were they thinking??

However the shorter version of this story is Ashley amazing CME therapist is a great advocate and went to batt for Ashley and managed to get  another 20 visit for the next 6 months.  Thank god!  She is very worried what will happen six months from now.

In the mean time I went searching for some advice on how to best advocate for Ashley in case her service level is in question again. Which I'm sure will come up again in 6 months time however I will be much more prepare. This is what I learned...

When you get those unexpected question like about decreasing nursing  hours.  I was told to  respond with... "I'd like to consult with Ashley's Doctor on that if you don't mind and get back to you with his input".

 Same goes with questions about reducing  PT or OT get letters from everyone professional involved they hold a lot of weight and make it easy for your case manager to grant you what you need since he or she needs to plead our kids case to her manger.   If  provide  back up from our Doctors, therapist, Early Interventionist, you are more likely to get what we are looking for.

Here's some important content I was told to include in these letters...

- The letter needs to state the benefits my  child gets from the therapy giving our child the much needed developmental gains.

-Be  specific if you know who the therapist is you want or need state their name and why  they are  trained and the best person to help.

- Without this service CCAC is  putting my  child at RISK if she loses these supports.

- It would detrimental or counter intuitive to take away or make changes to her services at this time.

Gather letters of support from everyone on your team that can help, your EI, PT,OT, all involved Doctors, nurses.   The more the better they don't have to be long.

Also in question was Ashley need for home nursing but nothing has been changed so far. I definitely worried about this but  plan to be better prepared next time I get a call about services.  If anyone has any advice for me on this I'd love to hear it .

Les Trois Petit Cochons

For Grammy and Grampy grade 4 french play of Les Trois Petit Cochons. The video is a bit jumpy as Taylor had a good hold on the camera while I was taping. Enjoy

Make video montages at www.OneTrueMedia.com

Guess where I've been here's a hint ..H1N1

I haven't had time to blog for a while there .. I blame it on  H1N1.  If you can I highly recommend getting your vaccine.  The first H1N1 vaccine clinic opened in our area after we were all sick. A little too late for us.

It's been a long 3 weeks or so as everyone at my house was ill with H1N1. My husband and myself and all four kids.  It hit Ashley the hardest she had the many days of fever followed by a hospital admission for respiratory distress she needed some oxygen, and breathing treatments.  Her lungs hadn't needed for this kind of help since she was a  baby despite many colds.  H1N1 was tough on her, she was only initially hospitalized for 48 hours and came for 4 days on Tamiflu and antibiotics.  She appeared to be getting better  when almost a week later she woke up from a nap with a fever that didn't respond very well to motrin, she was in respiratory distress again we headed back to the hospital she had developed bacterial pneumonia.  The doctors said this is something they see in some kids with H1N1 after many days of been sick pneumonia kicks in.  Totally yucky!   We caught it early and she only had a few more days hospital stay thank god.

She missed tick or treating, a good friends birthday party,  not to mention three  weeks of therapy and school. Tomorrow I hope she can return to her normal routine.  She's been eating really well the last few days  I hope that means she is on the road to recovery she lost weight of course so I  hope she will continue her interest in food for the next few weeks.

All in all Ashley  doing great and we all recovered.    I'm just a little sleep deprived after many nights up watching over her and need to get out of the house and do something.  My Mom and Dad  have been her helping me with  everything it would have been very hard caring for everyone  when I was sick myself.  Not to mention all the cleaning, cooking and laundry.  My mom even stayed overnight at the hospital with Ashley her first night admitted as my temperature was raging  too.  Thanks Mom and Dad I hope you get plenty of time to rest and relax now that your home.