This is the story of our daughter Charlotte Ellen “Charlie” who was born September 24, 2012. She is our fourth child and is such an amazing and beautiful baby girl. She was 5lbs11oz when she entered this world and that should have tipped us off. All of her siblings were 9-10 lbs and here we were given this tiny little girl. Her birth was easy and other than her being three weeks early and some troubles nursing, we left the hospital 2 days later. She had a bit of jaundice and so we were watching her a bit closely at first, but that resolved itself quickly. However, she had lost more than 10% of her birth weight and that was concerning. She took her bottle like a champ and soon starting gaining. I think it was roughly at 4 months old that I started thinking things were not quite “right”. By 6 months old, I knew there was something. She was not laughing or grabbing. If we showed her a toy it was like she did not even see it. We thought maybe she could not hear and started therapy and testing. When she was 10 months old we were told she had a deletion of 4p16.3 and our daughter had WHS. There it was. I am not sure if I felt relief in being able to stop searching or just sadness. I suppose it was a bit of both. I am not sure if I will ever forget that day or that phone call. I think I have done what most parents in this situation have done. I have stayed awake countless nights wondering and worrying about what “happened”. I have tried to analyze every moment of my pregnancy to see what I might have done differently. I have felt mad, sad, disappointed, and confused. I have also found myself wondering who she’d be at this moment and in the future if that one little thing had not gone “wrong”. I wonder and worry about if she will ever know or miss what might have been. I wonder if she knows I am her Mommy and how much she is loved. I worry about all of the unknowns. The “not knowing” is very hard for me.

So, here is what we do know about her:

She is like a gift we get to open every day
She smells exactly like a baby should
She is the sweetest little girl
Her family is crazy about her
She changes all of the time and keeps making progress
She is funny and always happy
Everyone that meets her loves her
She is just a kind soul
She loves her brothers and sister
She truly completes our family

Here is what Charlotte has accomplished:

She rolls front to back and back to front. She rolled at 6 months.
She loves her sweet feet and her hands
She loves to listen to my singing and will always smile
She sits and will reach. She has sat since she was 9 months. She does not get into a sit herself yet though.
She eats baby food and cereal from a spoon
She has slept through the night since she was 3 months old
At 11 months old she weighs almost 17 lbs

I truly believe that she will walk and I will will hear her say my name someday. We are so blessed to have her and I can’t wait to see what she does in this world.


12 Responses to Charlotte Ellen Grantham

  1. Tamara says:

    She is such a doll! And she is pretty advanced developmentally. I would say she is very mildly delayed according to WHS standards. My daughter Cassie is severely delayed. She is 15 months old and just learnt how to sit. And she never rolled. But all our kids are different, and do everything in their own time. Hang in there! It will all be only getting better and better :).

  2. jjenkins says:

    She is absolutely precious. My daughter caroline also has a deletion in 4p16.3. She will be 4 months old in 2 days and she amazes me more and more everyday at the things that she is learning to do. Seeing your little girl and what she has accomplished definitely gives me hope for Caroline’s future.

  3. Debra says:

    She is truely a gift and precious!!! God chose you and Danny as her parents because he knew you would love and cherish her. God can move mountains!!! I can’t imagine how you must feel but i hope you know Scott and I love you guys and will continue to pray without ceasing!! This blog is your first step in healing. You are sharing her with us:) Sending hugs my friend.

  4. Melissa Horinka says:

    Oh, my sweet friend. What a beautiful gift from God your precious family has. Thank you for sharing your story. I have no doubt that she knows you are her Mommy and that she loves you VERY much (Daddy, big brothers & big sis too).

  5. Sandi says:

    Charlie is a gorgeous little girl! She is blessed to have such a wonderful and loving family!! The journey you are on together isn’t easy but I can promise you it is filled with many blessings. Thank you for sharing her story!

  6. KevinO says:

    When Kendall was little, she never laughed or spoke. We weren’t sure she would ever talk. She now says “I love you daddy” with meaning and her laugh is so contagious. Charlie will do the same and will mean it like you’ve never heard it before.

  7. shirley bidnick says:

    Belated congratulations on the birth of your beautiful baby girl. It is almost time to wish sweet Charlotte, happy first birthday. Thank you for sharing the story of her first year with us. Despite your concerns, Charlie seems to be triving. The photos are lovely. Charlie is blessed with a hopeful, optimistic, experienced mommy. Her future can only be bright. I look forward to hearing more about her and her family.

  8. Yvonne Rigolo says:

    God has blessed your family in so many ways this is just but one of the facets of his love for you by giving you this special gift. Stay strong and keep loving her, she’s beautiful.

  9. Kristen Faccioli Licari says:

    Wow, she is doing really, really well if she’s rolling, sitting, eating, weighs that much, etc., at her age! I am so happy for you (and envious)! Those of us with younger kids can only hope that we are anywhere near as fortunate as you. Congratulations. Enjoy her. <3

  10. Kristen Faccioli Licari says:

    I just read your comment/response to Emily’s 6 month update – we are in downstate NY, about 15 miles outside of NYC.

  11. Kristen Faccioli Licari says:

    Also, I understand your hesitation about getting her tested, but I would encourage you to do so, as there are now numerous treatments available to help prolong the lives of individuals with CF. If it’s any consolation, you would probably suspect that something was going on if she did have it – her skin would taste unusually salty and she would often get sick with significant chest congestion. We are in downstate New York, about 15 miles outside of NYC.

  12. Letty says:

    She is so adorable and seems to be coming along quickly. Keep doing whatever it is that you’re doing. My son is 34 months and just started sitting on his own about 2 months ago. He can stand, but needs assistance….I think it has more to do with being silly and lazy. He tends to get cuddled more than he should by myself and brothers and sister. We can’t help it 🙂 but he can. Keep up the good work.

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