I need to make a post about Rachel again. I promise, I love all my children equally, but working through Rachel's disability is one of the reasons I made this blog. I am going to have seperate posts about my other kiddos soon.
Her head is soooo tiny. I love it so much. It fits into the palm of my hand and it fits in the crook of my neck.... I also hate it, because it represents what is causing her disabilities. Can you love something and hate it too? Over this past year and 3 months, I have had an infant. She has truly made me keenly aware of infanthood. That usually is a stage where its gone in a flash, and you wonder what happened? Honestly, I love having a little tiny person to still snuggle with and kiss. Her tiny fingers, and her tiny toes...All little baby things. I know she is growing some...its evident on her scale weigh ins. Last one she weighed 16 pounds...so she is moving up there. Her head isn't so lucky. It still is 15 inches in circumference. That is 2 inches bigger than birth. I know the bigger her body gets, the smaller her head will look. I am okay with that....I think. I just wish I knew how to make it grow.
I worry about seizures and development. I mean, she is trying to crawl, and she is now doing a little version of the army crawl. It's slow, but it's there. She loves~ loves~ loves toys. I can keep her happy forever with just a toy. She is so different than all my other children, because they were so uninterested in toys. They wanted to be held, fed, nursed, played with, and fed some more. She is so content to just look at people, and play with toys. Sometimes, i can forget that she is here, because she is so happy and content. Truly, when she cries, there is SOMETHING wrong, because she never cries.
Will she always be this content and happy? Will she develop seizures that cause her pain? What will we do then? This is the life of a parent with a child who has disabilities....the every single day of uncertainty. I know....parents in general-people in general even, deal with uncertainties. Will I get into a car accident? Will I lose my job? Whatever the case may be. But it's different in the disabled world. Everyday life is or could be compromised. It's so damn frustrating! Doctors, specialists, medicine...they are all fleeting at best and useless at worst.
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9 comments:
Holly, I admit, I'm so very clueless about all this, but I know how heartbreaking and frustrating this all must be for you. ((HUGS))
Is her skull just not growing, and do the doctors have any answers at all? I guess they can't graft bone onto her skull to allow brain growth? See, I'm clueless.
I love when you post about her, and I hope you post more to fill us in if you want to. . .
Her brain is what is causing her skull not to grow. Her brain itself just isn't growing. I mean, it IS growing somewhat, they noticed that on the MRI (which is all I have heard so far)but it's just not growing at a rate that a normal developing 1 year old would grow by any means. At some point, her bones will think that her head is done growing and close...thus not allowing any more growth even if it were to happen. That is when it gets scary.
She hasn't had a soft spot for over 1/2 a year, and that usually happens when you're about 2 or 3 years old. It is there to allow growth to happen...her's shut prematurely because her overall brain is so tiny that it didn't force it to stay open. Am I making any sense?
Just stopping in to say hello!
She is so adorable!! My niece who has Jacobson's syndrome had her soft spots close early, they ended up doing surgery to allow for brain growth. I do not say this to scare you but to offer you hope that there are medical things to do if need be.
You truly are blessed with her, every time I see her smiling face I see the blessing you have in her. Struggles,yes, and more of them than I am sure I can imagine but you have the blessings too. God is gracious that way!
I also wanted to say, "way to go on your loosing weight goals!" Becca is having a moms of many exercise challenge if you are interested in joining us!
The link is HERE
Thank you for your encouragement. I was aware of the surgery options...I guess only time will tell if the sutures have closed, and then the brain is put under pressure. Then that will definitely be an option that I am sure we will have to explore.
I know I am blessed...with all of my children. Sometimes I can't believe that God has chosen me to be the mommy to these awesome kiddos. It is bewildering! However, I am glad He did.
Thanks for the info on the weight loss blog challenge. I am not ready for publicity just yet, but I will keep it in mind. Thank you for thinking about me!
Rachel is SO incredibly cute!
I do understand your worries and fears very well, unfortunately....we worry about seizures and such things in the future for Emma. We'll be taking her to the neurosurgery clinic at CHLA on Mar 19 to find out if she really does have craniosynostosis (skull sutures that closed before they were supposed to). That's when we find out if she has to have the surgery that your previous reader mentioned.
Emma is 21 months old, and still weighs less than 17 pounds! She is incredibly tiny for someone who's almost 2 years old! She's so cute and little and snuggly, but it worries me too! Emma and Rachel are nearly the same size, and Emma's head hasn't been growing much for months now, either.
P.S. I will pray for you and Rachel, please keep me and Emma in prayer!
Congratulations on 2 days with NO POP!
Keep us posted about Emma. I will definitely be praying about the situation.
I can't believe how little she is. At least she isn't very hard to carry up and down your stairs. That's a good thing from this, right? :)
oh, and it's been 3 days no pop! trust me.....it matters. :)
Sorry I miscounted the number of days without pop!! :-)
Thanks for your prayers...yes, it is a good thing that Emma is still very light to carry, given the number of stairs in our house!
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