Life

Hi my lovely readers! I’ve been missing for a while. While I was trying to heal from my whirlwind of life, my baby is almost 8 months old. And as it turns out, so far she is behaving much like a 3 month old. She struggles to sit up, hold her head up and now she has a helmet which is heavy. Her helmet is for her flat head and she leans to one side, we aren’t sure why — it might have something due to her vision.

image

Ellye

She talks sometimes and can tell stories! She doesn’t sleep through the night but she’s getting better. She hardly ever cries!!! She keeps her hands balled up in a fist pretty much all day. She doesn’t reach for toys or play but she sucks her fingers. She loves the sounds of her sisters and the chaos of this house.

She’s my best friend. I love to be near her and just smell her baby smell, moms know what I’m talking about! She’s a heavy Ellye belly, weighing in at almost 20lbs, about 2 lbs shy of Eva’s weight and she’s going to be 3! She has the best turkey thighs ever! She’s already in 12-18 month clothes! Since she is not sitting up on her own she’s even heavier than most 8 month olds. I’m looking for a good sturdy baby carrier that I can wear. I’m thinking the Ergo since it can hold up to 40 lbs and you can put them on your back so it doesn’t strain you’re back. The infant carrier has been our holder for her but her weight is to heavy to take it anywhere now.

In our family update, I’m happy to say that I decided to start my own business called Progress Accounting. I’m now a contracted accountant that can work from home most days.  Brian’s sister has been staying with is for over a month is officially moving all her belongings from Florida.  I am thankful that grandma will be moving here also and that takes place this weekend!  Brian might be going to build a Walgreens 3 hours away starting in June so pray for sanity on my end and supportive wife duties. He will probably be gone for 4 or 5 days and home on weekends.  Marriage has been stressful during this time, poor Brian has had to deal with a lot from me in the last 8 months. I’m glad I’m feeling better these days. No one really talks about how marriages are affected while raising a special needs child. There doesn’t seem to be a lot of help in this category since only time can help. I have to say that it has been a journey thus far. All we can do is take one day at a time and be thankful for our amazing family. Sorry for the lack of flow for this post, I’m writing this in the wee hours of the night on my phone :) Thanks for reading!!

A Day in the Life with a child with ACC:::Series

This is my new series of posts regarding what it’s like to raise a child with ACC.  If you are interested in being interviewed, please let me know. I want to know everything about what it’s like to raise a child with special needs/ACC.

1. How long did it take to find out what was wrong with your daughter?

Diagnosed @ 6 years even though we had been under doctors care since she was a few months old.

2. Did you notice signs that she would be special needs?

From the moment she was born I knew something wasn’t right she wouldn’t feed –she was loosing weight and wasn’t reaching her milestones.

3. Do you use charts and/or aids to help her do things independently?

No we don’t use aids.

4. What books, websites, blogs, ect helped you learn more about ACC?

 Books I read were:  The Official Patient’s Sourcebook on Agenesis of the Corpus Callosum (amazon)
Agenesis of the Corpus Callosum: The Beast Within (amazon)
The main websites were:
www.corpal.org.
www.NODCC.org
And everything on a google search I looked on every site to find out everything I could and I’m on all the facebook groups

5. What does she struggle with the most in school?

 She struggles with all aspects of academic learning.

6. Is she in a special education class at school?

She’s not in a special education class but she has a support assistant for 1 to 1 and she has a IEP

7. Is she physically impaired? 

 No she is not physically impaired.

8. About on average, how much does she sleep at night?

She sleeps about 4/5 hrs a night.

9. If she doesn’t sleep much, what does she do if she can’t? (ie, cry, want you, or just lay in bed)

Watches TV or goes on her laptop or Wii

10. What types of behavior problems do you have to deal with?

She’s hyperactive and does not listen– she doesn’t get that things are wrong and even if she is punished she’s not bothered because material things are not important to her she doesn’t get things she does are wrong or a danger and she is quite immature for her age.

11. How old was she when she was potty trained?

Potty trained just before she turned 3

12. What do you think the future holds for her?

 I’d like to think she will be able to live some sort of a normal life job/marriage/kids but  I have to be realistic and we will have to wait and see.

Postpartum Depression


I had an idea that I would have postpartum depression based on the stress that I had during pregnancy and caring for 4 kids including a baby with special needs, a house, a husband and a career and everything else that I happen to add to my plate, like finishing my degree and add to [...]

[Continue reading...]

Results from Ellye’s EEG

girls 3

Ellye finally went to her appointment for her EEG. The results indicated that she does have electronic stuff going on in her brain that would indicate that she is at risk for seizures which was the reason for the test. She hasn’t had any seizures as of yet but at least we all know how [...]

[Continue reading...]

The use of words


So because I am knew at this whole “special needs” thing, I think a lot about the words regarding her specialness. I was born in the 80′s when slang terms like idiot, moron, retarded were used as daily language. I knew those words came from people who had mental retardation but we never used those [...]

[Continue reading...]

Mommy Milestone


I was tickling Ellye yesterday and I got a smile from her! I am so excited. I haven’t seen her do it again but I keep trying. She has a bit of a cold and has been having a hard time breathing through her nose.  It was a great day though! I have been wanting her to [...]

[Continue reading...]

A New Blog Name for a New Year!


I had been thinking for a while about changing our blog name. We aren’t moving much anymore and our lives have changed since Ellye was born. It just made sense. I looked at the last 10 pages on the familyofmovers blog and realized, we hadn’t talked much about moving and pretty much everything was all [...]

[Continue reading...]

Confirmation of Ellye’s diagnosis


I was going to originally post on Facebook my status but I would be lying by pretending I wasn’t dealing with some emotions regarding Ellye’s confirmation appointment with her pediatric neurologist. We hadn’t talked to her neurolgist since her MRI while she was in the NICU and I was pretty much sick with worry when [...]

[Continue reading...]

Special People


You weren’t like other children,And God was well aware,You’d need a caring family,With love enough to share.And so He sent you to us,And much to our surprise,You haven’t been a challenge,But a blessing in disguise.Your winning smiles and laughter,The pleasures you impart,Far outweigh your special needs,And melt the coldest heart.We’re proud that we’ve been chosen,To [...]

[Continue reading...]

Family Photos!

Family Photo

We got our family pictures taken! And it’s my birthday so instead of blogging, I am going to just post our pictures! And if you are in the area and need a photographer, please check out Bamber Photography! 

[Continue reading...]
Follow

Get every new post delivered to your Inbox.