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Showing posts from June, 2007

2,190 Days

It has been 2,190 days. That seems like a lot of days. However, there are some out there who have been doing this thing much longer, say for 30 years (10,950 days) or more. So our small 6 years compared to that seems pretty insignificant.

Six years ago I can remember Father Y talking to us about marriage, you know the part past the wedding day. It seems we get so hyped up about those few moments at the alter and a party afterward that planning for the days past 'The Wedding Day' are nonexistent. The world was grand, how could anything ever go astray in our future fairytale? Father Y talked to us about those days with us nodding along that we understood and would always stick to the plan; after all, that’s what people do in marriages. Right?

We did not get married until I was in my late twenties, Matt in his early thirties. It’s a great story. Planning and establishing a future were first. We were responsible. I often pick on him about this, but think about it, we met in the summ…

Fun In The Sun

A little G-tube venting with help from the big brothers. The biology in me couldn't resist the song.
As I was saying life is up and going again.

I keeping thinking back over the past months and man have times been hard. It is no lie. Things were hard, not impossible. I met a mom recently new to this parallel life I am living with my defiant special needs little girl. Wow. It makes me very humble. I do not ever want to forget what it was like being there with the new and unknown. Not to mention the feeling of where did the life I had planned go?

While you are in it, not that I am out of it yet, you don’t realize the wide range of emotions are normal. You have to do something with the emotions and hope that what you do turns into something positive. This blog is great and all, but I have not posted about the down days - when I was having a moment. It would be much to embarrassing, but those times are the reality also.

Now I think I am somewhere in the middle. Some days are great, some days okay, and some days down right stink.

For all the resources there are for Ivey, it is limited to reso…

Life - Specifically - My Life

It is actually beginning again. Life. I had my doubts that it would ever be possible, for me that is.

It has taken fourteen months for Life to begin idling and slowly proceed forward. Fourteen months and one day ago, the assumptions that I had about my life were much different than they are today. Fourteen months ago my daughter entered into this world. Her new Life began; my life stopped, or so it seemed. The glass house that I lived in came shattering down around me.

My daughter was born with many medical complications that were not detected before her birth. Her resume of medical trivia is long and extensive. Her resume at one time made even the best physicians and specialists cringe at the possibilities of her life, all of which were skeptical. Fourteen months later, my daughter astonishes those same people. She beat many odds and thrives in a world that she was never to participate. She, like all children, is a miracle. My daughter is what remains when there are no assumptions. She…

Under The Sea

at the Georgia Aquarium
Whale Shark

I came home one afternoon to these amazing books sitting at my door. Look closely and you will see that each book is in braille. Ivey has a guardian angel that drops in from time to time. Her name is Beth. She has a heart the size of the seas and just as full. I have not been able to properly thank her for the books, so I want her to know that I am so very appreciative of the books and for everthing else that she does for our family.

I saved the best for last - The Greatest Dad in the World.

Paris Who???

It is great to get out and about and have people tell me how pretty Ivey looks and how excited they are at all her new accomplishments, even from some I do not know very well, or for that matter, some I have never met. For example, I was heading into a store about a month ago looking for a birthday gift for one of the boy’s friends. A lady followed me into the store; no actually, she was following Ivey. She asked me if I was Ivey’s mom and if this was precious Ivey. The sweet lady wanted to meet Ivey because she has been praying for her. A short time into her conversation with Ivey she looked up at me and said, “I assumed that the baby was Ivey.” In short, their aren’t that many little girls being hauled around in a stroller along with a blue feeding pump bag, a suction machine in a green bag, a diaper bag, two blonde boys in tow, and most likely a stick horse or something that has to do with horses. Oh yeah, and a mom carrying almost all of it on her shoulders, while trying to hold t…

MAPS (Microthalmia Anophthalmia Parent Support)

I have mentioned many times that I have met several families who have children with anophthalmia via an internet site. Well, a couple of us moms, nine to be exact, decided to take things a step forward. We are creating a new site dedicated to providing parental support to families with children with anophthalmia (no eyes) or microthalmia (small eyes). The site is up and running now; however, it is still in the beginning stages. For now there are only tidbits of information.

Go ahead and take a peak at it. You can also meet my friend Megan and read of a terrific story about her daughter Ava on the Family Spotlight Page.

We plan to incorporate many great resources. We also aim to let other parents know - it's okay - they are not ALONE in this world. I can tell you this, finding myself and our family in this new world with Ivey is isolating. No matter how much support our family has, no one can truly relate - period. Isolation. Although I can not call up my best friend, a neighbor or m…


Here she is...ROLLING.

Ivey had her GI appointment yesterday. She is weighing in at almost 14 pounds. That's two pounds since her last visit. Now that my little doll baby is more active we have to do something about her being on her feeding pump so often during the day. So the schedule is being revised. Once upon a time I posted Ivey's military style daily routine, which did not include her brothers, her parents, or any kind of 'fun' activity, I will direct you back to it if you are interested (A Day In The Life). Here we are tweaking and manipulating schedules yet again.

The plan is to drop from 4 bolus feeds down to 3 bolus feeds per day. The kicker is to drop feedings from 2 hours per feed down to 1 hour per feed, while maintaining a certain volume of formula. By doing this, Ivey will have more time to be a real 1year old. Ivey will still be imprisoned to that blinking monotone machine, but for only three hours total during the day, not the 6 hours she was doing yeste…
I was trying to rearrange the sidebar and lost people. Now I can't find them. I'll get them back up soon (I hope.)

The Roll, AFO's, a few new tricks and the santaeasterbunny

Thirteen seems to be a lucky number around here.

If you recall, Ivey had her last surgery on Friday the 13th. Yesterday, after 13 months, she rolled over from her back to her stomach. It is official ---- Ivey is mobile. She is one determined little girl. Look out child proofing-it's on!

Ivey had an appointment with her ocularist last week. Her conformers are really starting to increase in size. This week she will visit her GI doctor for the first time in three months. A record. I spoke with his nurse so much for awhile that she actually recognized my voice, which is not something we aspire to around here. It has been three short months since he last saw her, and he is going to be amazed. She actually has chunky little thighs.

Ivey also got her first AFO’s last week. You can see them in one of the pictures. They are the tiny purple braces on her legs. A love-hate relationship is developing toward them. I love that they will help her flexibility and to stand. She hates to wear them.