Wednesday, April 28, 2010

Baboon.

(Charlie, about 6 1/2 months)



















When I was 10 years old I developed a severe case of psoriasis on my head. The doctor thought it was ring worm and suggested we put down my dads cat that he'd had for 14 years, assuming I contracted it from her. We did. He then suggested that I cut my long hair really short so that it would allow my head to breathe and it would clear up faster. We did, but we had to go to many hairdressers before we found one that would touch me...the hairdresser wore rubber gloves and my mom had to pay her three times her normal rate. I also had to stay out of school for two months and a letter was sent to all the kids parents telling them that there had been a monster with ring worm among their children and to get them checked asap. After two months, it turned out to be psoriasis. Needless to say, after the doctor asked my mom if he could take a picture of my head for the medical books, calling it "the worst case of psoriasis he'd ever seen" and neglecting to apologize for suggesting we put down our cat, practically shaving my head, keeping me out of school for months, and all the humiliation that went along with his misdiagnosis, my mom decided to find a new doctor. I have two points to this story. The first is that I remember, as nauseating as this may sound, my mom putting baby oil on my head every night and wrapping a plastic bag around it, and in the morning, like a mama baboon, picking my head for hours...this went on daily, for months. Moms do these sorts of things without even batting an eye, it's just second nature to them. I'm that mom now too. I'm willing to do whatever I have to, stomach turning or not, if it helps to make Charlie happy and more comfortable.
My second point is that I never really realized until lately just how much stress can physically and mentally affect someone. For the first time since I was ten years old, the psoriasis' are back, and I have eczema in my ears too. My memory is non existent...I put all my appointments into my iPhone and I still forget. Last month I made the same appointment twice, for a nurse to drop by the house, and I stood her up both times. Today I texted Charlie's nurse wondering where she was, but I had the wrong day. And the other day instead of putting eczema cream in my ears I put "Jack Newman's Nipple Cream" in them (3 days in a row!). I lose my train of thought mid sentence, am easy to snap, and am having a lot of weird nightmares. I think that it's a cocktail of stress, lack of sleep, and just general mama brain...somethings got to give.

We took Charlie to see her pediatrician yesterday. She's lost a little weight so we need to monitor it more regularly to make sure we're feeding her enough through her g-tube. It's a science when it comes to SMA babies and their weight...you need to make sure they are getting enough nutrition while at the same time making sure they don't get to much and become too heavy because their weak chests can't handle the extra weight. So, we're working on perfecting her diet. It was a bit of a sad appointment because we realized that her sucking reflex must be dwindling, otherwise her weight would not have dropped because we've been feeding her both by g-tube and breast...if anything, she should have gained weight. At least we know that we chose the best time to get her g-tube surgery.

We had a couple of research students who work in genetics come over yesterday. We have agreed to be a part of an on going study that follows parents who have children with rare terminal illness'. At first I didn't want to participate, but then I thought why not? They plan on using the information they compile to better provide help in the future to families who are in similar situations. I've done my good deed for the year i guess.

I have been getting emails and messages left here on my blog from a lot of people who have either gone through/are going through a similar situation to my family's, as well as from just genuine kind, compassionate people. I just wanted to say that I appreciate every one of your messages and all of your words of praise and encouragement. It means a lot to me/us and sometimes, it really is one of the only things that keeps me feeling hopeful and optimistic. Thank you kind strangers and friends. xo



8 comments:

  1. I HAVE HEARTS IN MY EYES FOR YOU LIKE PEPE LE PEW WHEN HE MEET THAT LOVELY BLACK AND WHITE CAT. YOUR HONESTY AND ABILITY ARE AMAZING!

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  2. Oh Cherie... I can only imagine how much stress you guys are under - I'm sorry to hear that it's finally taking a physical toll on you. As for the psoriasis - Nolan and I both got terrible eczema after he was born... we found a couple things that helped: Rocky Mountain Soap Factory has a great eczema kit, we use the moisturizer stick and the pumpkin soap for hair and body. Cetaphil Barrier Cream (available at Shoppers) has worked wonders and I even got a Hazelwood necklace for Nolan that helped too.

    As for Charlies weight loss... you guys are doing such a great job and it's just going to take some time to get the feeding in balance - don't forget that she's also a growing girl - I swear she gets bigger each time we see her. Every parent faces challenges on feeding their kids - you guys have that times a million - you put Charlie first, do the best you can, make the hard decisions (getting the feeding tube)... it's hard, but take pride in these accomplishments - you're an awesome mum.

    And then there's the memory issue... I'd like to tell you that it's going to get better but it's just a fact of mum life. Again you have it times a million with Charlies illness... you're dealing with the stress, sleep deprivation and pressure of those first 3 months of being a mum - just over and over like a real life groundhog day. Take solace in the fact that Bill Murray figured out a way to make the best of it and so will you.

    We have a bit of a cold going round our house right now but as soon as it's all clear and gone I'm coming over to give you a break and find you some fun... not to mention sneak in some visit time with my favourite redheaded princess.
    XO Kim

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  3. Glad to hear the girl is doing well. Nipple cream. Funny you mention it. We still have many uses for lanolin here for Shira...too funny! I bet your ears are silky soft now!

    Diet is a very important part of SMA. The problem with too much weight isn't just weight on the chest but too much weight and Charlie will loose a lot of her movement overall. Shira and charlotte over hear on the island and many hundreds of others in the states follow the AA diet or amino acid diet. Based on Dr. Kelly's findings he found that sma type 1's have muscle mass as low as 10% some even 5% and because of this have serious metabolic disorders. I had Shira tested doing skin fold tests and dexascan and it was found that she had about 15% the muscle mass of a regular child. Muscle makes up about 40% of your bodies mass.

    Elemental formula is the way to go in my books. It keeps shira's heart rate down, reduced secretions, less sweaty, less illness and on and on. If you need help with diet let me know or I can introduce you to a couple of other parents that are also fantastic with setting up diets for kids. Shira has been on the AA diet using Vivonex since she was 6 months old and the same with charlotte hodgson!

    Give the girl a big hug from us and go easy on yourself, let yourself grieve and hold your girl tight! Remember Charlie doesn't know anything else except for what she is and these SMA Type 1 children are very smart and very aware! Shira doesn't feel like there is anything wrong with her because we don't treat her like she is disabled we treat her like a super hero ready for action everywhere!!

    Don't sweat the small stuff just be!

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  4. Hi Cherie, I don't know you yet but know you through 2 friends and I love your little Charlie even though I have never met you and Charlie and I read your blog all the time. I have tears and you're all in my heart so much. I just love seeing all those beautiful pictures of Charlie and your video in Hawaii.
    I so can relate to the psoriasis!!! I have it in my scalp too, comes from my dad. When I went to school here in Vancouver it was a very intense program and I was very stressed and wham, psoriasis was back. I just recovered from postpartum depression and again, psoriasis came back and went, it's so anooying and itchy!!! I can't believe how bad you had it when you were a little kid! How rude of those hair dressers, you should have grab the hair dresser's face and rubbed it on your head just to freak her out ;0)
    Meet you on Sunday at Christie!

    Caro xoxox big hug and a nice sweet kiss to Charlie (love her name too!) for me, my hair was the same colour as hers when I was little, loooooove her hair color (and her smile and her eyes and everything, she's soooo hugable!), little fiery fighter trooper!

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  5. i get stressed induced psoriasis too and evian's skin cream really helps. you are a great writer (in addition to being a fabulous mother) -- i totally feel that mommy baboon thing -- ♥ how it is hardwired into us.

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  6. First of all, I want to say that I think it's wonderful that you are allowing the students to follow Charlie's case for research purposes. I can imagine just how hard that decision was to make. However, perhaps this decision will help other families in the future, maybe even save lives.

    Such an important venture & an unselfish act in a time of great sadness & stress is an indicator of your strength, character & compassion. I applaud you for it.

    My daughter had a terrible outbreak of Psoriasis when her boyfriend was killed 6 years ago. It was a terrible time for all of us & the stress & sadness seemed unbearable. However, we got through it & daughter's psoriasis is gone now. Yours will go to in time. Your body is reacting to all the stress and emotional turmoil that you're going through. You may want to talk to your doctor, perhaps he can prescribe something for it.

    Forgetfulness goes with the territory of motherhood but in times of great emotional stress, memory cells take a holiday I'm afraid. Perfectly normal, don't think you're losing your mind or anything like that.

    I may not comment on every entry of your blog but I read them all and there's not a day goes by that I don't think of you guys and Charlie. You are all in my thoughts often & in my prayers always.

    Hugs,

    Linda

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  7. Cher, you are courageous in deed!

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  8. HELLO CHERIE AND MATT AND CHARLIE...
    I JUST WANT YOU GUYS KNOW,EVEN IF I DON'T WRITE ON HERE IT IS NOT BECAUSE I DO NOT THINK OF YOU.. I DO ALL THE TIME.I AM KIND OF ONE OF THOSE PEOPLE THAT BURY MY HEAD IN THE SAND..I AM GLAD THAT I MADE A VERY STRONG GIRL SO WHEN A SITUATION LIKE THE ONE YOU ARE IN THAT YOU COULD HANDLE IT,I REALLY FEEL FOR YOU, AS A MOM I GO TO BED CRYING AS I AM THINKING OF MY LITTLE MUNCHKIN,AS SHE COOS TO ME ON THE PHONE.YOU ARE SO STRONG AND I AM SO PROUD OF YOU..NOW YOU CAN SEE WHY I DON'T DO THIS..BLOGGING THAT IS. I DON'T MAKE TOO MUCH SENSE AND MY GRAMMER IS TERRIBLE,HAHAH..BUT I DO THINK ALL THE TIME...AND READ ON HERE ALL THE TIME WITH TEARS FOR ALL OF YOU....
    LOVE MOMMY

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