So guys its been a while since our last blog….. Grace turned 1 back in july… it was a good day but a great sadness shadowed us as to where we stand with milestones…. or what little milestones we have achieved along our 1year journey.

It takes great effort to write this as although we are so very proud of our gracie we are beginning to come to accept the fact that yes.. she is very behind.. we are working really hard on sitting and although very close still a long way behind.. she nows weighs 12lb 8 and eats all day long i dont understand where it all goes.. she enjoys jelly and ice-cream and cake, not a great deal os savoury food but then given the choice i would choose chocolate cake over an apple! She is still unable to chew and sometimes she will tolerate lumpy food and sometimes she wont…

Grace enjoys playing with everything she is very determined and she does not like it if she has something and you take it away.. her greatest toy is her dad… laughs at anything he does she absolutely adores him.They share such a special bond he is the entertainer in our house as soon as he gets home from work she starts shouting DADADADADADA! Grace has a new kitten called prince

… Yes i maybe mad in getting a kitten but i think it will be good for grace she gets very excited when she sees him and she spends all day shouting and waving at him! We are expecting our 2nd baby in December and i think this will be very good for grace as she loves family life… the more people in a room the better as she gets all the attention and she has so much love for people which I’m so grateful for.

Grace is doing very well……. but on a more serious note how far will we go.. it never leaves our minds.. will she walk? will she talk? when will she sit up? will she ever feed herself? the list is endless… i think the most important part of this journey has been learning how to be patient which has been very hard… People always say “oh isnt ur girl just like a dolly”….. which is sweet but she isnt a dolly she is grace a real person just like everybody else… i know they mean no harm but it really hurts our feelings..we still lie about her age if people ask us in the street.. im not sure if its because its easier for us or to save them the embarrassment of asking awkward questions… ive now lost count of the amount of people that have told me ” hope your daughter gets better soon…. after explaining she has a genetic disorder… its hard that people dont understand.. will anyone ever understand??

I read all your wonderful stories and it gives me so much hope.. which helps get through the bad days and ive met some really great friends through here and the facebook site so thankyou all for sharing your stories..i enjoy a good read… hope you are all well.

Heres some pics of grace dressed as piglet as we were having a rainy day in what better way to spend it dressing up! xxxx


5 Responses to MY PIGLET…..

  1. Ruth says:

    What an amazing family. I hope you will inspire so many parents, especially new WHS people. I am sure little Grace will enjoy being a Big Sister, quite bossy too!!

  2. Aisha says:

    Grace is a real credit to you and your husband, shes such a happy little girl and so very loving, It was so lovely to have met her I think I could of quite possibly played with her all day long!
    Thanks for sharing your thoughts xxx

  3. Latosha says:

    She’ll get there trust me and she is sooo beautiful. My daughter will be 13 yrs old in 8 days so I know exactly how you feel. I felt the same at that time but It’s all good trust me. Its funny but my mom used to lie about my daughters age when we used to go out because she was so small. I never understood it but I get where you’re coming from. My daughter did everything late but she has come such a long way and always surprises us. Funny story really quick..yesterday I told my daughter that she left her CD in the house and could not listen to it in the car on her ride to the school bus..this morning before leaving the house she went in and grabbed her CD from her radio to listen to it in the car. Most people would think nothing of this but the moral of the story is: 1. she loves music and 2. she has more sense than people give her credit for, i didnt even think she remembered or cared about what I told her the morning before, Heck, I forgot about the CD!!
    Enjoy your daugheters every move because they grow quick 🙂

  4. LeeAnn M says:

    Hang in there! Grace is looking good! Brodie was the same, he could not sit up til 15 or 16 months old, he started crawling with much therapy at 17 months. And now at 3 1/2 he is in preschool keeping up with his class, he comes home and shows off his crayon drawings, nods and shakes his head to my yes or no questions about his friends. Keep at it and enjoy the journey, and enjoy that dazzling smile that seems to come pretty easily for Gracie, she’s precious! (and first birthday is a little sad for all of us but 2nd year seems to usually be so much better) best wishes!

  5. Letty says:

    GOLD STAR for Grace’s accomplishments!!! I love Piglet..and I must say I love him even more!!! I feel the same way as you and have the same questions. I know a lot of the answers are, “Only the time will tell,” and that’s ok but I kinda would like to know now 🙂 Although I do have some sad thoughts, I know he’ll be fine, as will your precious a baby girl. I was told a day ago that Nathaniel wasn’t a baby and that he was a todler. I looked at the baby (20 months, 13.9 lbs) then back at the doc with this “ARE YOU CRAZY” look. The funny thing is that he and the nurses caught it and laughed. I know he’s still MY baby, but age wise he isn’t. Our little ones will always be “little” to others but I think the only thing we can do is accept it. But so what, we just get to enjoy the “baby part” a little longr. Just gotta say that I love that picture.

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