Our Journey through the Maze

Life

lynne — Tue, 24 Apr 2012 08:32:26 +0000

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.

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

lynne — Fri, 17 Feb 2012 21:43:20 +0000

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

lynne — Tue, 07 Feb 2012 23:59:01 +0000

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 all that, 3 hours of sleep most nights and a crazy needy 2 year old who insists on needing me every single minute of her life and boom, you have a crazy mom. (And no, I’m not giving up on any of it, I enjoy staying busy during turmoil!)

I originally went on Zoloft after having Ellye but I only stayed on it for a couple weeks because it had severe side effects. I haven’t been on something for a least 3 months. I went to the doctor this afternoon and told my doctor that I just needed help. Originally, I thought I was stressed but my symptoms included; fits of rage, agitation, uncontrollable crying, general moodiness, unable to concentrate, and the list goes on. Even though there were times that I felt like it wasn’t as severe as other’s depression, I could recognize that my attitude was suffering.

Because I have a live in nanny, it’s been an eye opener to have someone from the outside see you for you. I haven’t sugar coated anything since she’s moved in. If I’ve been angry, I’d yell. If I were upset at Brian, I’d complain. But the fact is that I never used to act like this before I had Ellye. I have always been very easy going and easy to get along with. Now, I’m like an evil witch who is super negative about everything. When someone tells me something positive about Ellye’s condition, I feel like I’m conditioned to expect the worst. It’s just terrible to feel this way. I’m so glad I got help today. I’m not sure if the medicine actually is going to work but the first step is getting help.

If you are struggling with postpartum depression, please get help. It really helped me to know that I am not the only one who has gone through this. I really enjoyed learning that even celebrities have dealt with it too, as you can read here on Goop. Have you ever had postpartum depression? What was your saving grace?

Here’s a link to a website in case you or someone you know is struggling:

http://postpartumprogress.com/

Here’s a list of symptoms of postpartum depression

Results from Ellye’s EEG

lynne — Sat, 04 Feb 2012 19:22:02 +0000

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 to keep her safe in the event that she does have a seizure. The neurologist told me not to worry (ya, right!) but to keep my appointment with her endocrinologist next week to make sure her pituitary gland is there, I think it is there based on her blood work but it’s still important to check to make sure.

Here’s a ton of photos that were taken recently by our nanny Amber.

The use of words

lynne — Mon, 23 Jan 2012 23:02:45 +0000

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 words directed at someone with that diagnosis. The words were used in daily banter.

Now that Ellye’s diagnosis is mental retardation, I feel like I’m saying a bad word. Even though, this is the diagnosis that her doctor used.

Now that I am a parent of a child who is developmentally delayed, I worry about people being mean to her and using words like those above to hurt her. I am hoping though that she won’t care because she’ll know she’s awesome anyways.

Do those words above (idiot, moron, retard) affect you in your life? Do you consider them bad words?

Mommy Milestone

lynne — Sun, 08 Jan 2012 16:37:11 +0000

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 interact with me. I feel like she can’t really see me. She may be looking at me but she doesn’t really get excited or anything when she looks at me. I’m hoping that will change. Her adjusted age is 3 months (on Jan 13) I have no expectations just living day by day.

We have a vision therapist who has been trying to get her to follow objects and she says that she is a little slow with tracking. But each time she comes Ellye falls asleep. So we will see what she does this next week. She still has torticollis, I’m not sure if it will ever go away. We are trying to keep her on her belly more so that she gains the strength she needs. She appears to be trying to get stronger with her core muscles.

For some added therapy, music is supposed to be good for her. I would like to get a real piano for her. I wonder if that’s tax deductible? Sure would be nice. Brian set up his drums this weekend so I’m sure that’s not the “therapy” sounds we are looking for but she seems to be doing okay with the loudness in the house.

Please support us in my new additional income venture by shopping for bags, baskets, organizing tools, ect at 31 gifts! http://www.mythirtyone.com/Lynne11

A New Blog Name for a New Year!

lynne — Mon, 02 Jan 2012 15:36:24 +0000

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 about our family and this maze of life we are going through. I feel like whenever you have a child that is diagnosed with anything out of the ordinary, some moms become obsessed with researching every tid bit they can find. That’s where I find myself a lot these days. Every minute I have I’m researching characteristics, how to’s, days in the life of Ellye’s diagnosis. I know how some people say that parenting a child with special needs will just come to you but I want to be informed. I want to know everything before hand so I’m prepared when I may have to deal with it. Information is not such a bad thing as long as it doesn’t take you out of your day to day life. Of course, I will probably learn things that don’t pertain to my specific child but who knows if there are other children out there who will.

That’s where this blog is taking me. It’s so surreal when I think about how far we’ve come. Just last year, I wasn’t even pregnant at this time. We are so excited about living in Virginia and Brian’s new job and Emilia starting her first school experience in Kindergarten. It’s a lot of change that we went through in a year, more so than any other year of moving that we had done. So much has changed for the better, the only thing that is worse than last year is my lack of sleep but I’m hoping to get Ellye sleeping more during the night. Brian’s mom and his sister are planning on moving out here also this year and it fills my heart with joy to have our family close. Who knew Virginia was the place to be? I love Richmond, it’s a perfect place for us. 2 hours to the mountains, 2 hours to the beach, not much snow (we haven’t had any yet…) and my favorite part of Richmond is Carytown which reminds me of little Boulder.

I’m excited to see what 2012 brings to our lives! Thanks for staying apart of our Journey through the Maze!!!

Confirmation of Ellye’s diagnosis

lynne — Fri, 30 Dec 2011 01:36:31 +0000

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 we went in for this follow up appointment. He confirmed that she has Agenesis of Corpus Collosum and Microcephaly and that genetics revealed that its a fluke. Thank God, it wasn’t anything I did during pregnancy.

We got a X-ray done on her head today because her head is not shaped right. The worst case is she may need brain surgery to open up her sutures but we hope that we don’t have to do that. She also has dialated ventricles but it isn’t hydrocephalus. She also has torticollis, her head is shaped flat on one side so we have been doing neck stretches with her Occupational Therapist and Physical Therapist weekly. On Tuesday she has to have an EEG to test for seizures. She hasn’t had any seizures but these tests can tell if she will in the future.

The thing that stuck with me the most from the appointment was when he started talking about the severity of her development. He said that based on having both ACC and Microcephaly that it’s not a question on whether she will have mental retardation, it’s a matter of when will we notice that she does have it. He didn’t sugar coat anything and we are glad for that. Of course, he doesn’t have a crystal ball but odds are not in her favor of having an average intelligence. He started talking about the chance of her not being able to walk and that was kind of a shock, I don’t really think about her not walking or bathing herself, ect. I know that I shouldn’t worry about these things but I’m a mama and that’s what I do.

Thank you to all my blog readers and Facebook friends for reading this. It’s nice to know we have such a big support system. It’s been a very crazy year for The Holloman’s and this is probably going to be my last post of 2011. So many good things happened in 2011 that my heart is full with hope for what 2012 will bring. For Christmas, Brian got me a weekend trip away which we will take before January flies by. I can’t wait to go and unwind from all the stress of this year.

Special People

lynne — Tue, 22 Nov 2011 14:37:05 +0000

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 help you learn and grow,The job that you have brought us,Is more than you can know.A precious gift from Heaven,A treasure from above,A child who’s taught us many things,But most of all- “Real Love”

I think a lot about special people who are in our lives and why certain people get chosen to care for them. So I thought I would spew a cloud of thoughts down here on the blog in a random way. It’s healing for me to get it out.

will other kids be mean to her/ will she look different/ will she ever have kids/ will i be able to be patient for her/ will her sisters care for her or treat her different than the other sisters/ will people laugh at her/ will she ever have a boyfriend/ will she live long/ will she be able to drive a car/ will she be able to play sports/ will she be able to walk/ what can i do to teach her/

Ellye has been diagnosed with Complete Agenesis of Corpus Collasum, Microcephaly, Septic Optic Dysplsia. She is 2 months old and our heart!

Family Photos!

lynne — Fri, 11 Nov 2011 16:18:56 +0000

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! Click to view slideshow.