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An update on Holly... and yeah.. kind of long!


Forum: 2008 Playroom

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  #1  
October 20th, 2010, 08:45 PM
Lozzy_Macca's Avatar Mega Super Mommy
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Hi all, just thought I would give you a quick update on how Holly is going.

We previously took Holly to the Dr's for a check up as her physical development is a lot slower than other children her age. I know you should never compare your children but seeing as my DH has Muscular Dystrophy Central Core disease, I have had a horrible gut feeling she has it too.

DH's is one of 4 children, one of his sisters has it and the other brother and sister don't. His Mum and Grandmother (who hasn't been tested but shows symptoms) also have it too. So it is genetic.

The Paediatrician we were reffered to was lovely, he checked her out, and got her to stand up from a sitting position as well as go up and down stais unaided. Of course she couldn't go up the stairs and struggled to stand up. He also asked her to run, which she has never been able to do. He confirmed the diagnosis and said she has significant myopathy.

He wants to run some tests on her but I did tell him I was dead against any muscle biopsies as DH had one when he was younger and it was a terrible experience so he is going to search for DH's results and go from there.

The other test he is going to do is a blood test to see if she has the RYR1 gene which is the gene assosiated with malignant hyperthermia (allergy to anaesthetics and muscle relaxants). But he did say she does have a 20% chance she could have the gene, which are great odds but she also had a 50% chance of being born with MD too..... anyhoo.

I know every Mum want's the best for their children and often feel guilty and at fault if something goes wrong. DH and I knew this from the start but I think when your thoughts are confirmed, it sort of makes it all real. My family are so supportive and her Daycare Mum is just fantastic and is great with her. The peadiatricial also said her vocabulary is just as good as a 4 year olds, which makes me laugh! I have always said she was more of a talker than a walker. She has improved so much over the last 6 months and seems to get stronger everyday. Her confidence is building and she doesn't get so upset if she falls over anymore (which is often around 10-15 times a day just from tripping over her own feet), so you can imagine how many grazed knees and hands we have had lol.

I know you are all probably thinking it could be worse right?? I mean my {insert swear word here } FIL has told me, 'oh well, she could have a life threatening illness like cancer', and I get that!! I'm thankful, seriously I am, but if I can't express my concerns or feelings, then I will just bottle them up. This is the reason why I want to be a nurse, I want to be the one to make a difference and change someones life when possible.

I believe with the help and support from Dr's and nurses, physios and anyone else I can find, Holly will have a normal life and won't have the hurt, bullying, name calling or ever have that feeling of - I can't do that, which my DH and his sister have had all their lives. I want the best for Holly, and not in a asset sort of a way, I want her to achieve her own goals and independence and now I am having another child, who I know also has a 50/50 chance, I will do the same all over again.

Sorry about such a long post, it's hard to talk to DH about my feelings, I guess he sort of sees it as beeing selfish. He very rarely talks about how it makes him feel but I can see it on his face when he falls over in public, or goes swimming and other guys look at his body (he has scolliosis as well) I know you all will understand. Just something I had to get off my chest.

In the end, I'm just so proud of her, she has come such a long way and has done it all by herself, I know one day she will be running on the soccor field or dancing on stage but until then, anything she does is a bonus!!

xxoo
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  #2  
October 20th, 2010, 09:00 PM
quietsong's Avatar Just Another Slacker Mom
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Hugs, hon, and many thoughts to you guys!! It can ALWAYS be worse (well, barring the unthinkable), but the truth is it can always be better too, and any diagnosis is hard. Having a child with a physical disability myself, I know where you're coming from, and hope you know you are NOT alone. If you ever need to talk, vent, or whatever to someone, please know I'm here for you. Holly is SO lucky to have you to advocate for her.
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  #3  
October 20th, 2010, 09:10 PM
Lozzy_Macca's Avatar Mega Super Mommy
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Thanks for your response Kel. I knew there was a reason why I came back here. Just some reasurance it's just what I need.

I guess I thought I would always have a little mini me lol, you know, dancing up on stage in a cute little tutu or a sparkly hip hop outfit.... But you never know, miracles do happen and I just hope she never judges herself and gives up becuase she isn't as good as others and can't do what others can.

I feel like a bad Mum sometimes though, I feel as though I'm too hard on her or too tough, I loose my patients and yell at her for being too slow or taking her time, or say 'just get up' when she falls over. I just feel like slapping myself in the face, who does that?? I guess i'm just learning too, I need to adapt to it for her, not so much for me, becuase who will she look up to?? If I give off a negative vibe then so will she. I know it will get better, I have a year off now so I will be able to pay her more attention and work on myself and my patients too.
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  #4  
October 20th, 2010, 09:21 PM
DonovinsMommy's Avatar Mega Super Mommy
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hugs hun! Holly is lucky to have you as her Mom! she will achieve anything she wants with you and dh by her side!
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  #5  
October 20th, 2010, 10:11 PM
MyBabyBear's Avatar Mega Super Mommy
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Lauren you are a Wonderful Mommy and Holly is one lucky girl to have you
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  #6  
October 21st, 2010, 05:43 AM
youngwoman's Avatar Platinum Supermommy
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Oh Lauren, you are an amazing mom. Despite any doubts you have about your patience (which we all learn as we go!), you have a wonderful attitude and Holly is going to benefit from your support and encouragement. Hugs to you both!
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  #7  
October 21st, 2010, 06:13 AM
quietsong's Avatar Just Another Slacker Mom
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Patience comes and goes, and sometimes you're going to be frustrated... Just remind yourself, when you're feeling bad about it, that you aren't so much frustrated with HER - you're frustrated with her challenges. You'll figure it out with time though, and those moments will become less and less; I can't say they'll go away, since I still have them with Danny, but they do become less! When I find myself getting frazzled, I do something I know Danny loves. His laughter tends to fix it every time
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  #8  
October 21st, 2010, 07:04 AM
tanya74's Avatar Platinum Supermommy
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Holly is a bright and beautiful girl and she is so lucky to have you as a mom! I bet with your help she'll be able to accomplish anything she sets her mind to.
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  #9  
October 21st, 2010, 07:44 AM
happyhme44's Avatar Mega Super Mommy
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yeah the whole it could be worse comments make me really angry. That is not the point here. What each person is dealing with is THEIR worse because they don't have it any worse than that. We have to respect each persons struggles instead of telling them to shove it down deeper because "it could be worse." We as humans are not meant to stuff emotions it leads to serious health issues! I am positive that this is something you guys will be able to manage. Thankfully medicine has advanced a great deal since your husband was a child. Don't feel like you cannot talk about how tough this is because you can!
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  #10  
October 21st, 2010, 07:57 AM
TallyGirl22's Avatar Platinum Supermommy
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I am so glad you were able to get some of that out! I cannot imagine not being able to express my feelings and thoughts! You are such a good Mom for taking such good care of Holly. Stay strong sweet girl
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  #11  
October 21st, 2010, 08:13 AM
Ditzzy's Avatar Stupid Lamb;)
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Ava had a muscle biopsy and we're just getting the results now. ((Hugs)) I understand what you're going through. Ava has Mitochondrial complex 1, which can be fatal. It's a bitter pill to swallow.
Honestly, the biopsy was fairly easy procedure with a short recovery.
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  #12  
October 21st, 2010, 09:23 AM
dream2bemommy22's Avatar and baby makes 5
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Lots of hugs. Im sorry your family has to go through this, but i also believe with the right care Holli will have an amazing life!!

thanks for sharing and keep us posted.
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  #13  
October 21st, 2010, 11:20 AM
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(((hugs))) Lauren! I agree with the other girls, I think you are a great mommy and you have Holly's best interests in mind. Its not as if this is something you *know* how to deal with by default, but rather you learn as you go and I think you are doing a wonderful job at it. Hang in there!
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  #14  
October 21st, 2010, 02:53 PM
jillylicious's Avatar mom always liked you best
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I am sure you and your DH wish you had gotten better news, but in spite of it all, you have such a brilliant and positive attitude that I am 100% sure no matter what happens you are all going to do great. Many hugs to you, and don't go far - we will all be here waiting to share in Holly's success with you!
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  #15  
October 21st, 2010, 07:40 PM
mayandsofiasmommy's Avatar Platinum Supermommy
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Hugs!! Hearing anything about your child having any sort of difficulty has got to be SO hard. You are a great mom and she will have so many opportunities and have a great life! You have the right attitude about it!
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  #16  
October 22nd, 2010, 08:21 PM
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