the beach

Most of our beach memories are on video. For the past two weeks I have been trying, to no avail, to somehow get the videos on the blog. Finally, last night I did manage to get Ivey sleeping on the sidebar. Maybe I'll get it up in a few days so you can see our sweet girl in action. Computers are not my friend. So, here are a few snapshots. In one photo Ivey did have on her sunhat which did match her swimsuit, but definately did not match her coverup. Still, she is adorable. gwen

Okay-Ivey appears to have healthy kidneys. One does have distension (swelling); however, it does not show any signs of blockage. Good news. Hopefully the distension is a result of the bladder infection. In two weeks Ivey will return to the doctor for a follow-up, then we will schedule another test. Then upon test results, she may or may not need to see an urologist. Yippee!!

Check out Ezzie at Borbe Bunch

Footprints

This past week Ivey took her first beach trip. In fact, it was her first vacation and one that she had very much earned. As always, she astonished me. My sweet 14 pound 17 month old brought the sure basics of life straight to the surface.

Let me backtrack for just one moment. Soon after Ivey was born my friend Sarah gave me a copy of the poem Footprints in the Sand. Reading the poem for the first time after Ivey’s birth was a God Moment. I taped it to the inside cover of a picture book of Ivey’s. I cannot tell you how many times I have read over that familiar poem in the past year, always searching out some means of comfort. I had read the same poem hundreds of times before Ivey’s birth, but after she was born the poem took on new meaning. Suddenly I was the one walking alone.

Solitude. Loneliness. Isolation. Seclusion. Separation.

Those words describe life, at times, with a special needs child. It feels like you are the only one. Throw in an obscenely rare trait like anophthalmia and the loneliness intensifies. It magnifies itself to an incomprehensible point at times.

Some days I want some one to say “I understand” and mean it. Weeks like this one, where Ivey’s seizures tighten the coils. Our neurologist wanted to try to isolate exactly which type of seizure Ivey is having; however, he’ll have to do some research. She also developed a urinary tract infection. We spent Friday having ultrasounds because of that. Now we must wait until next week to find out if Ivey has issues with her kidney(s). In all likelihood she does not. She has spent the past year without any problems with her bladder or her kidneys. Nevertheless, we have been warned that over time we will probably find more problems. So, three more days loom ahead of us until we know. The walls close in tighter.

Suffocation.

Back to the beach. Very early one morning I carried Ivey down to the beach. There was no one out except for the occasional morning jogger. We walked the beach for a while then came back to the spot in front of our condo. There I knelt down so that Ivey could stand in the sand while waves washed up on her feet. As the water washed over her tiny feet and buried them deeper into the sand, she would grow very still and tilt her head to one side, concentrating intently. She was completely in the moment.

Watching Ivey take in the sounds, smells and feel of the water and sand brought tears to my eyes. For some reason I began to think about that poem as we were kneeling there. Early mornings on the beach are so serene. As we stood up to go back inside I looked down the beach one last time and that is when I realized the poem is completely right yet it leaves off something very important.

In the poem it says when you see only one set of footprints you are not alone. It is then that God is carrying you. However, there were countless footprints on the beach that morning even though no one was there. Not only are we lifted up are carried, but we are also braced by those around us in our daily lives, whether placed there by intention or default, and only if we choose to be. I think that along the way there are many people, angels if you will, who are there to help too. Those walking in our lives daily leave those same footprints on our hearts. They may not be able to step into my shoes and feel the weight at times, but many of them are mothers and can imagine. They are also friends who sometimes sit there on the sidelines feeling helpless in trying times, other times they feel the excitement of good news. Those are God Moments too.

Most often the strangers yank me back into reality and remind me that I am making choices to perceive myself as journeying alone. Last Saturday we stopped at a restaurant for dinner on our way back home from the beach. We were about to leave when two elderly women asked if Ivey had a problem with her eyes. As my mom held Ivey, I explained Ivey’s condition and answered various questions about her medical situation. They both shook their heads saying that Ivey is a miracle baby. Finally, one of the women asked if she could lay her hands on Ivey and pray. So they both did. And right there in the restaurant they began praying aloud for my daughter. I watched as my mom fought back tears. I watched as Ivey smiled at the two strangers touching her hand and leg praying for her.

Sunday as I sat in the ER watching Ivey have her second seizure, I thought about those two women. The thought brought comfort – not loneliness.

We are surrounded by people who are willing and wanting to help us carry the weight. Some come in the form of strangers - others we call friends. Either way, God has placed very special people in our lives as a tangible means to feel that we are not going at this alone. There are others out there. Sometimes you have to set out to find them; other times they find you.

Whatta week

Ivey has managed to have herself one busy week. We came home from a great vacation, which I am working on pictures for everyone. On Sunday however, our elation of vacation was nixed like a finger caught in a slamming car door. Sunday morning Ivey had another seizure. We were grateful to be home and capable to go to our hospital here versus a foreign hospital at the beach. While at the hospital Ivey proceeded to have two more seizures. After monitoring her for several hours they sent her home with us.

Monday night Ivey had a fever. Tuesday morning the doc said she has a urinary tract infection. Thursday I took Ivey to Atlanta to her ocularist where she received new, and hopefully last set of conformers. Then we traveled on over to visit her neurologist to follow up about her seizures. So far we have upped her seizure medication and must watch her for weight gain, growth spurts and illness. All of which can affect her medication and allow seizures to break through.

Today Ivey went for an ultrasound on her bladder and kidneys. We want to make sure that she has a run-of-the-mill UTI and not an issue with her kidneys. Since she has so many mid-line issues, we must keep check on various organs. Hopefully we will know the results by Monday or Tuesday. Say a quick prayer for good news.

Other than that, Ivey has had a great week. She has been playful here at the end of the week. She is rolling non stop. She also got her big brothers off to their first week of school. This week has been a reminder that we must always stay on our toes and not let our guards down. Most importantly, it reminds us to enjoy the great times, like the beach, so that hectic times aren’t quite so crazy.

Oh, she is still on track for her first prosthesis. Six weeks from now she just might get her ‘new’ eyes.

Out of The Darkness

A recent story published in Reader's Digest.

The Beach

We are home from a great week at the beach. There are lots of fun pictures and of course, unlimited stories. We'll catch up after I read my 71 emails, get two boys off to their first day of school, make several doctors appointments, wash infinite loads of laundry, and figure where all my troops should be this week.....

gwen

Playing music with D.

She is wearing her passy miur valve (the purple thing). We just call it her passy. This little contraption allows Ivey to talk. It also can come flying off like a bullet whenever she coughs. So, we pin it to her so not to loose it. It maybe a pretty purple piece of plastic, but it is worth its weight in gold - literally.

Just a little taste of applesauce. Finally, we found a spoon that Ivey actually likes. These flat spoons are from the ice cream at Honey Moon Bakery.

from the rummage sack

Today the boys got hold of my camera. I would show some of the great pictures, but only three of twenty-something were not video. I still can't figure out how to get a video on this crazy thing. If I could, ya'll could see some great video of Ivey. But in these pictures obviously Knox was the camera man and Walker was up to no good....

A different day.

Ivey's roll now has a new component. She is pulling her knees underneath her and pushing up a little with her arms. Around the floor she goes and normally she has no preference to a soft floor over the hardwoods.


Notice her great tan and her two bottom teeth? She does have a mouth full of teeth. The majority are on the top and a couple are coming in out of the normal order. Having a cleft palate shifted her teeth a bit off of center on the top.
Ivey did visit the cardiologist this week. Remember this one was rescheduled from last Wednesday's catastrophe. Great news though. She weighed a whole whopping 13.5 lbs. Her heart sounds good. No problems from her little heart defect. Ivey will not see him again until this time next year.

Thursday, August 9th....Go get a MIRACLE TREAT @ Dairy Queen

proceeds will go to Children's Miracle Network.

MIRACLE TREAT DAY~THURSDAY, AUGUST 9TH~DAIRY QUEEN

(click over on the red) You can even pledge to buy a treat for someone.

2006

You have all seen it here as you watch Ivey. The ordinary miracles that happen every day are so far from ordinary ~ they are extraordinary. A sweet treat is just one tiny way in which you can make a difference in these ordinary yet miraculous lives.

After cleft lip surgery and tracheostomy

2007

Just another ordinary miracle .... Today

Remember Scottish Rite is a part of the Children's Miracle Network.

It's making me crazy

It is official.

I have lost my mind, or at least the part of my brain which used to function like an intelligent (although many may not agree) adult. Earlier this week Stacy called to see if she could switch Thursday for Wednesday. Great. But, I had no idea what I was switching. You see last week Ivey was scheduled to have an EEG for this Wednesday, which meant a trip to her neurologist in Atlanta, thus meaning I would need someone to ride along. However, Stacy was planning to go somewhere with us on Thursday...I had no idea. So I played along and said, "Sure, that will work out fine." Of course when I agreed about changing from her planned Thursday to Wednesday, I had no idea where I was supposed to be going on Thursday. Hence, I should have gotten a clue…..this was going to be a long week and officially the first time that I truly dropped all of the balls that I thought I had mastered in the grand juggling act. Thank God I haven’t been juggling daggers.

So yesterday, Wednesday, the vicious cycle of clumsiness began. Somehow I planned for Ivey’s Physical therapist to be here at 9:30 am. I also planned for Stacy to be here to leave for Atl. At 9:30. Then I checked phone messages, which by the way our messages are rarely checked. If you called weeks or even months ago, you might still be wondering why the call was never returned…..we never checked the message. Send a pigeon. It would be more apt to get the message here before voicemail. Anyway, message said we were to be at Ivey’s cardiologist at 10:00 am. Now I don’t know about you, but one mom and one baby can only be in one place at one time. Duped.

Lucky for us the cardiologist's nurse called early Wednesday a.m., and guess why, his wife had a baby. One appointment down and rescheduled…..onto PT…So off we went to the neurologist. Imagine driving an hour and a half with a baby with a full tummy who must remain awake for 5 hours prior to the EEG. The impossible was accomplished by Stacy and cold wet wash cloths…..not so much fun. By the way, Ivey finally slept once we arrived back in Rome many hours later.

That brings us to Thursday. Somehow I had it in my mind that I did not need someone to ride to Ivey’s appointment anyway; we were only driving to the local hospital to visit her gracious GI doctor who comes here, which means that is one drive we do not have to make to Scottish Rite. Well, I got up to the pediatric wing…no doctor..not even going to be here until the 20 something of August. What? So why is it on my calendar-which is never wrong. I’ll tell you why. I am an idiot. Ivey was supposed to be at Scottish Rite at her craniofacial appointment not in Rome for GI. So here was the downfall. Calendar said 12:30 Williams. Below that, make appointment with William M. Too many people have either the first name William or the last name Williams and when it is written on my calendar obviously we go to the wrong appointment. (in the wrong town) These people need new names. Sorry Mandy, this does not include you, unless you schedule something with me on the same day as the two stated above. If I don't show up, call a doctor. I am probably there wondering where the heck I should be.

My question…where should I be tomorrow? Does anyone out there know?

Add to this a four year old with a fever and throwing up and a two year old with an extra dose of energy. My dad is a Saint. He manned the house while I was out gallivanting around with Ivey. Superdad/Gran-Gran.

At least Ivey did get her blood drawn to check her Phenobarbital level while we were at the hospital today. The girl stuck Ivey 2 times; all the while I am asking to get another person to stick her because she was not having much luck. Watching a needle wiggle around in Ivey's arm at the hand of someone else makes a momma temper go off. Compressing the urge to slap her hand or go over the table and tackle her and then jam a needle into her arm and wiggle it around sits right on the edge of my nerves and is near impossible to not act upon. I smiled the entire time so not to provoke some angry woman with a needle. She never did get someone else to try to stick Ivey. Got home and guess what, the lab called to tell me there was not enough of a blood sample to test, would we mind coming back tomorrow?

What do you think?