For five years Cystic Fibrosis has haunted Ellas little life. Most days are wonderful and fun but others are hard and tiring. At age 5 she was also diagnosed with ADHD. Share in my expirence as her mom, and see the struggles we face, and the love and fun we have.

Tuesday, September 25, 2012

Is this you? CFun

Fatty Floater
Solid Sinkers

Halk it up

500 Pin wheels in your house

Trampoline in the living room? Sure
Only swallow 4 at a time 5 makes you choke

Bubbles the fish has a melted face from the dishwasher, whoops!
Ballet or Soccer? (Fingers crossed, soccer soccer soccer)
No more strawberries, unless you dip them in nutella!

We're at the beach! Skip the HyperSal!
You've been in there for 30min, need a few more books? Yes, I'll come keep you company, turn on the fan though.

Heavy Sensory Cards

When Ella gets home from school she picks some heavey sensory things to do. She gets to pick as many and which ever ones she wants. She really enjoys all of these things. I have them printed out in cards and I place them in a jar so she can access them herself.

Wash windows

Play with playdough
Roll up in a blanket

Climb Play Ladder
Hammer nails

Do hopscotch

Water Plants

push around the house

Sweep the floor

punch paper

carry something around the house

Fill me up and pull around the house

Hop in a sac

Color Sandpaper


Hop on me

Monday, September 24, 2012

Sensory Disfunction... the back story

Nails down a chalkboard, the lights turned on in the middle of the night and the smell of skunk all trigger our senses to say  HELLO!  GO AWAY!  or STOP! We don't consciously think of these reactions they just sort of happen just like when Ella begins to feel uncomfortable from her clothes. This is called Sensory Processing Disorder.

We have had endless battles that have lasted hours and hours over the past several years over clothes, shoes,  coats and hair. The fits would come and go and intensify with any event causing a change in her little life. Stress, lack of sleep, a belly ache and any other sickness increases the likely hood of a fit. Anyhow, they are terrible.  Jon and I have been at the end of our ropes and managed to still try to help her. 

 The ability for Ella to function at home has come to a screeching halt, since Kindergarten has begun. Her issues range from shoes feeling uncomfortable, pants, tights, the seam on socks or tights, waistbands, the seam on panties, sleeves feeling too tight or loose and lights in the morning. She has overcome a few things but it's come at the cost of others.  So while she is having these issues she has some serious impulse control issues as well. She usually has some sort of immediate regret after she bites, hits or says mean words but none the less they are completely unacceptable.

The worst part about all of this is, I see my strong, independent little girl put herself down constantly. I will deal with the hitting, wake up early to prepare for the fits, come up with new techniques to calm her daily but there's nothing i can do to stop the low self esteem from forming because she can't accomplish the things I know she wants to. She says things like "I'm sorry to let you down" "I'm a dumb girl" "Why can't I be normal". She trys and trys and can not seem to get past this. 

She was diagnosed with ADHD but a Sensory Evaluation was not done at the time because our insurance does not recognize Sensory Processing Disorder as a disorder yet, therefore, they won't cover it. So I began researching and came up with my own sensory diet for her.  The thought process is if her senses have not developed fully yet, you stimulate them often through play and they will learn to process correctly or fully..... eventually. They learn to process fully eventually anyway but a sensory diet will decrease the likely hood of other issues from arising, IE low self esteem, anxiety... who the heck knows. All I  know is that I have to do something to get my kiddo back on track. 

I think her problems in the morning and at night are a result of Sensory processing Disorder and inability to deal with her emotions (related to ADHD) exacerbated by stress and tiredness. There's my mom diagnoses. We are using a Turtle Technique preschool curriculum to learn to stay calm and deal with emotions. We are using Heavy Sensory activities and making her bedroom into a Sensory Room.

I realize the school system will evaluate her and provider her with occupational therapy but that is all done during the school day when she is suppose to be learning. She will miss many days of school because of her CF. She already doesn't feel normal so I'd rather not have her taken out of class for this. 

I began changing her room already and I will post soon with pictures! Sensory Room on a dime!

Wednesday, June 13, 2012

March on Beacon Hill

          Last month I attended this awesome event which will go down in my life as a monumental day!

      I left the house in ironed clothes, a button up purple shirt and a matching pin with Ella's picture on it, home made by my self, of course. During the three hour rainy drive into Boston, the thought of others dropping her off, picking her up, giving her meds all without me weaved in and out of my mind. It would have driven me crazy if also I wasn't so nervous about meeting with my State Rep and State Senator in a few short hours.
       I've never been great about telling 'my story' with heart ache in an visually emotional sobbing way. I have always taken pride how we fight Cystic Fibrosis head on and how we don't let it control our life. So I knew when it came time to tell my state rep about our fight against CF I needed to take off my strong armor and show my pain, Ella's pain, in order to get my point across.
       I marched into the State House and found my way to the stair case where the proclamation was going to take place. For a CF mom standing in a room with others who are highly involved with CF on a daily basis is a rarity. I felt like I was at the CF Hall of Fame. CF Clinic Directors from Children's Hospital Boston, Birmingham's,  Mass Gen, Umass Memorial and Baystate were all in attendance. The list can go on and on with all the brilliant minds in the room. And then there's me: A Mom to a 5 year old with CF knowing nothing about politics, policy or lobbying.  I knew not a soul in the room, except where they went to school, had their fellowship, published any abstracts, but really, I knew no one and I was quite nervous to walk up to strangers and strike up a conversation.
        Finally there was a speaker who I knew I had something in common with! She was a mom to a kiddo with CF and an official advocate with the CF foundation. I walked up to her after the proclamation and introduced myself to her which trickled into many other introductions.
After the presentation a small group of us congregated  because we had all received appointment letters to meet with our congress people. We headed upstairs for lunch and a briefing about an amendment that  we would be lobbying for.

         The amendment to the Senate budget would allow people to apply for co-pay assistance programs which are currently forbidden in MA. I was extremely nervous at this point because I figured out that I was going into my first meeting ALONE, without a CF Foundation person. I asked if they could switch one of their appointments around so someone could go with me the first time around.  Luckily, I was able to have some company on my meeting with the Senators office. It didn't go as great as I would have liked but the whole appointment only lasted about 10 minutes and I was glad!
       My CF rep left me and I had to kill some time until my next appointment. That was when I ran into  another CF mom who was smart, articulate and just amazing. We immediately started talking about our kiddos and the challenges we face. It was just wonderful seeing first hand that someone actually is fighting this fight with me and Ella, and for the first time I felt like I wasn't alone, in that building and in life. I was filled back up with confidence and hope. I left for my next meeting with Rep. Kocot's office with a mission and with purpose to tell someone who matters that living with CF is tiring, hard and painful.  Making a policy that steepens the up hill battle we face each day is NOT what we, your constituents want.
       Needless to say, I nailed it. I was articulate, courteous, thankful, emotional and made my point as to how I wanted him to vote when it came to a health care policy. I knew my point sank in because the staff person was crying and invited me to meet with him out in Western Ma. I was very happy with my meeting and as I was walking down the long empty echoey hallway, my heels click clacking, all I could think of was "If she only knew how much I love her".

Monday, April 11, 2011

Did you take your enzymes?

Does this phrase haunt you? I don't even have the disorder and goes through my head about  457 times a day.
Did you take your enzymes?           Did she take her enzymes?         
Wait! Did she have her enzymes? 
I can't imagine actually having CF and hearing everyone chant this at me all day long.  As if I would need a reminder. Ella has been taking enzymes since she was days old, every single day, many many times per day. Will she forget to take them when she gets older and is managing her care on her own?  I highly doubt it. I do fear she will have resentment issues for the constant reminders I will probably be giving her. At times, I annoy myself while asking her.

Just last week I was preparing her breakfast, going through the regiment, lining up the meds in the proper order for her to packman through. She was eating her cereal with whipping cream when I shouted the infamous phrase:
"Wait! Did you take your Enzymes?"
We both looked at each other confused, because neither of us remembered what we just did 60 seconds prior. Ella's eyes were glancing at the parade of medicine lined up across the table in front of her, trying to visualize the enzymes leading the bunch. I was frantically trying to retrace my steps. Did I put them on the table?  Finally, we looked towards each other for an answer and we both started smiling until it would a full blown outburst of laughter.
Taking enzymes has become a reflex for Ella and despite my anxiety about making sure she gets them, it has become a natural thing for me, too. We were laughing so hard at ourselves because we realized: of course she took them and how could we forget? It's not like we just left our keys somewhere. I had to pry off the child(adult) proof cap and she had to swallow 3 big honking pills. It was cute seeing her laugh at herself.