Tuesday, June 28, 2011

Victoria - June 28

This is Miss Victoria. She is a proud member of her heart family (LEGALLY!!) and just got home this last week. She got directly off the plane and straight to our local children's hospital. I beg your prayers for her!! Your prayers are incredibly important!! If you are an Atlantan, here is a concrete "least of these" opportunity.

Here is her current STORY and her FAMILY'S BLOG.

I am going to be spending the night with Victoria on Wednesday night. I am more than pleased to be doing so, and hope to come back with an idea of the family's needs...but the last time I spent the night on the 4th floor at this particular hospital was back when Elise was on Chemo. We've been there for over nights on first floor post-op, but Victoria is not on the first floor. My chest is getting tight thinking about it and find myself really struggling to breathe. I seriously didn't expect this physical a reaction. I can honestly say that I can hardly wait to hold her and be a snuggle from Jesus. But I would appreciate a couple of selfish prayers for my surprise anxiety.

I would like to remind you why this is so important. THIS is fact. This is why, if you can, I would ask you to donate to Reece's Rainbow or consider being a parent to someone who desperately needs it. The fact is, children like Victoria are dying with no one to love them, no one to spend the night with them.

If you can't open your home right now, help someone who is. Please.

Monday, June 27, 2011

ADHD and the Apples...

Elise has an appointment with her neurologist this week. To continue to grope blindly in the medication rack, apparently. We are on our 4th medication. And our 4th medication no-go. This one and the last one made her emotional and a bi-polar train wreck....like from running in literal circles to weeping in the floor...in 3.6 seconds.

Please pray that we find one that works without making her all kinds of side-effect crazy!!! I'd love to have this ironed out in time for school, because I love her teacher too much to make her deal with a professional mourner during math and speech therapy.

That said, I am far enough out to find this wildly funny and somthing that needs to be shared...

You know that old saying "The apple doesn't fall too far from the tree"? Elise's ADHD may not be all that much of a surprise to most of my family. It was to me, though, and here's why. I have it. Guess how I learned this piece of information?? I accidentally took Elise's meds a while back. The first one...back in January. And instead of hopping me up, like it absolutely should have, it totally mellowed me out.

How did this happen? I don't know. I have ADHD. Actually, yeah, I kinda know how this happened. I poured out Elise's medication into my hand and called her to come to take it...simultaneously shaking out my allergy medicine into my hand...and popped in in my mouth. With? You guessed it, Elise's Intuniv. I recommend against this time saving plan in future. Because I swallowed both. And because it was neither toxic nor do I believe in bulemia, there was really nothing to do, but to see how I felt.

Initially, I was stoked. I was looking forward to having excess energy so I could clean our house in Spring Cleaning mode. Because that close to Christmas, I seriously needed to.

Theeeen I started getting veeery sleeeeepy. And totally chilllllll. And the wierd part was I could feel the medication pushing me down. I could feel it pinning down my usual effusiveness...and I didn't really like it. It felt wierd. But it certainly had the appropriate effect, for someone with ADHD.

When I told my mama and some other of my family recently, they giggled at the situation, but were not as surprised as I was. As a matter of fact, they all kinda nodded sagely. Like Yoda.

Thanks a lot, Y'all. Now I'm scared of what else I will discover about myself while parenting my kids!

Blog Recommendation

Okay. This one is on the verge so I have been reading it for a while before I linked it up. But it it's all TRUE, Folks. I've SO BEEN THERE in soooo many of these posts.

I am not 100% in agreement in everything *cough* *language!*, but come on, who can we all say that of? I will say, though, it is smack on in a lot of the "ack!" moments that we deal with as special needs parents. It is also said in a hysterically funny manner...or it is if you've "been there, done that."

Stark.Raving.Mad.Mommy has 4 kids with varying issues of Asperger's, ADHD, anxiety, and some other stuff thrown in. She offers ADVICE and PERSPECTIVE and just general "Everyday Life Observations That Leave Me Snorting in Hysterical Laughter on the Floor"...granted the very not-everybody-else's-everyday-life may be why I find it so funny...Because it is MINE *cough* *GROCERY STORE*!

And so, I leave you to catch up on her past posts...and enjoy!! If you are one of my readers who reads to learn about "US", then read carefully. As funny as it is, this is the truth of it. If you are reading my blog to feel not as alone...this is GREAT!!

Friday, June 24, 2011

A Plan

I have fought with myself on whether to make this post. I have decided to say as little as possible and not to link it up to Facebook. Why? Because we need the prayer, but we need to not shoot ourselves in the foot.

Simply put? We need a Special Needs program at our church. Not a full-blown ministry at this time, but we need to take care of our own. And it's not just my kid.

A friend approached me with it heavy in her heart. A friend who has no children who would qualify for such a program. She felt God's calling. And so I wrote up a plan that I had built in my heart and mind years ago. One that we could implement with very little effort...it could fit so well, so easily.

And so, I am asking for your prayers. We need wisdom in how to present it. We need wisdom in how hard to push. We need wisdom in how long to wait.


Catching Up, Dahlings!

Things have been nutsy here lately, being it's summer and all. I figure that since I have a slow evening, that I ought to quick and get you caught up or you won't come back 'round here!! I promise that I will make at least SOMEthing of a post every week, even if it turns out to be a quick picture or something!! Okay? Forgive me, please?

We got out of school and ran like crazy up to Ohio for my cousin's graduation. Then we ran back down to Atlanta for a meeting for Ethan's work. And then we turned around and ran to Myrtle Beach for a mini vacation with Ethan's parents and brother and his family at a condo. We wrangled an extra night after they left at a rat hole hotel on the beach...and discovered that even though we can fit in a hotel room, it's not a comfy fit. At all. But it still turned out some good memories, which is all that matters anyway.

I am not really a beach person. Neither is Ethan. But our kids all love it. I mean LOOVE it. Gabriel loves the waves. Him and a boogie board, and he is content for DAYS. Amelia loves the sand. She will get a bucket of sand and a bucket of water and mix and mix and mix... Charlotte loves to run...she likes to let the wind rush over her back and tummy... Elise will stand stock still in the surf and let it rush up against her legs for hours. Then she will join Charlotte in aimless running, and then she will happily stand in the surf for the rest of forever.

Elise at the beach... She is totally mellow. She is calm and peaceful and happy. I really don't know that I would ever have to address medication, I certainly don't have to fight with her over whether or not she is hungry... As a matter of fact, we discovered at the beach that "I'm hungry" does not necessarily mean that she is hungry. She informed us that she was "Hungry for the beach." And over the course of the days, she was also hungry for sleep and her Leapster and the pool. So, "I'm hungry" simply means "I want". Good to know.

In related news, Elise decided that this summer, that there would be no warm up time with the pool. Which is utterly unheard of. (Every year previously, she has panicked at the gate of the pool and there has been sadness and wailing constantly. Until the very end of last year...she found a certain measure of fun in the last couple of pool trips.) She is too big for her swimming jacket with attached swimmies. So she graduated to a life jacket. Which may account for her calmness at the pool in general. We have to snook the belly straps pretty tightly to keep in place, so it may calm her by pressure...like a weighted vest. The first time we went to a friend's pool this summer, she took all of 10 minutes to get in...and spent the entire afternoon swimming around like a fish. I have not gone to the pool and returned without a migraine since Elise was a year old. I'm dead serious. There has been screaming, hanging on me, and general distress every single trip. Between Elise's independence and Charlotte's age/independence, this is the first time in 7 years where I can sit at the pool and enjoy watching my kids having fun at the pool. I cannot tell you how much joy this gives me. Elise has, since that trip, swam so much at various junctures that the life jacket has rubbed her armpits raw...which is a whole new issue, but it is only discovered once we get home, of course....we'll figure that one out eventually...but the pool is fun again. Yay!!

While we are on the note of Elise growing up? More good news. I got some intake results on Elise from her hippotherapy (horse-partnered physical and occupational therapy) assessment! We actually broke out of the 3 year old levels, which I swear she's been stuck in for forever!!!! I got a quickie phone call from her hippotherapist who said she was assessed at 4 AND 5 years old in a couple of areas! Wahooooo!!!!!!!

What's that you say? Elise is 8.5? And I am excited that she is at an 4 or 5 year old level? You betcha. Progress is progress. Independence is independence. Right? And so we celebrate!!! To the POOL!!!!

Tuesday, June 21, 2011

The New and Improved Go-To Meals!!

As a person and as a family, I am trying to over-haul our eating habits. Elise is struggling with high cholesterol and her body will be affected long term by her learned eating habits. So the changes are as much for me as for her.

I recorded some of our best newly discovered recipes as a family over at my personal and family blog, Sticky Elephants. I thought I'd share them over here because Elise is really enjoying some of our new options!!

The First 6 Months Recipes

I hope you find a new one to try!!

Friday, June 17, 2011

Church and Inclusion

I am working through some of our own questions that is tightly tied to what is appropriate to ask for...I will talk more at length of this another time...but I thought THIS needs to be thought over...

Thank you to Fighting Monsters with Rubber Swords for sharing!!

Thursday, June 2, 2011

heart reflections

Currently Miss Ollie Faith is getting ready for her heart surgery on June the 9th. I would consider it a personal favor if you would join me in praying for her.

I find myself so very anxious. Even though I know certainly that God will do His very best by her. I think I may be anxious for old, tiny Elise as much as Ollie.

Ollie has had a heart defect that was the first red flag to having Downs, when she was still in utero. They have know that this surgery would be necessary since she was only "half cooked". But she is growing like a weed and is deliciously pudgy and pink and deceptively healthy looking.

I had a couple of flashes of fear with Elise when she went in for her heart surgery. But when she went in, she was actively in Cardiac Failure. Her heart already had no place to go but down and the surgery could only be a good thing. We not only had no option, but it was visibly telling on her tiny body.

When Elise went in for her open heart surgery to repair her ASD, VSD, and Mitral Valve, she was a measly little 6 lbs. Barely. And at 3.5 months, that is not normal and not good. I had to pump breast milk, mix in preemie formula, and mix in some corn oil just for added calories so she maintain weight and wouldn't keep losing. Half the time, we had to wake her up and pour it down her throat with a medicine dropper. Nursing exhausted her. Her heart was working so hard just to keep her blood pumping she didn't have the energy to do anything. She would smile and snuggle, but she had to be woken up to do so. She would make little "murf"ing sounds of pleasure, but cooing was often hard for her. At 3 months she could not roll over because she didn't have the strength.

Her skin was waxen white. Her lips were the only pink in her face, and sometimes not even that.

She was so tiny and pale when I handed her to Dr. Manning at Cincinnati Children's Hospital. I sat wondering if the surgery would be too much for her tiny heart for 6 hours, 2 more than they expected. When they did the sonograms on her heart, even the day before in pre-op, her heart was so tiny that they could not see the extent of the heart walls that were missing. Rather than a few tiny holes that could be stitched shut, she required several patches of Dacron because the holes were so big, they could not be stitched.

But as Ethan said 3 days before the surgery, if God had told us before hand that he had a baby that he needed us to watch for a few months, we would have said yes. As I handed her to the surgeon, I offered her to the Surgeon as well, with open hands. And He gave her back. I remember all the dates when God has repeatedly given her back to us, and each and every one I treasure in my heart.

I pray for Ollie. I pray for miraculous healing. I pray for her physical strength. I pray for her spirit. I pray for her surgeon. I pray for the surgery assistants, nurses, doctors, and anesthetists. I pray for her family and friends as they wait during those long hours where they can do nothing but pray. I pray that they get to feel the gift of receiving their daughter healed. Restored to their arms, hearts, and lives.

It really is the most amazing feeling! Without wishing harm on anyone or their children, I hope you get to experience the weight and yet freedom of your heart when God restores something to you. It is utterly incomparable!

When we were brought back to the Cardiac Intensive Care Unit when Elise was released from recovery, she was kicking and PINK. She had blooms in her cheeks that we had NEVER seen. A nurse told us in passing that she thought that if she was not restrained for her own good that she would hop up from the bed and run down the hall... It was hard seeing her with the incision. It was sad to see her with all the tubes. It was not ideal. But to see such a miraculous change in her strength and health made my heart feel like it would burst. I will never forget seeing the life in her eyes that first moment. So bright and joyful, like she could FEEL God's powerful healing rushing through her new heart... It was so beautiful.

As I have said before, sometimes I wonder if those who have experienced God on such a deep level are kept a part from us because we could not comprehend the magnitude of God's very SELF. Elise has had so very many brushes with God. He keeps his hand on her hair...she seems to be so hyper aware of the magic and joy of any given day...the very Life that makes ours worth living...I am thankful that she shares what they think we can handle...because it fills my heart to the very brim with joy...and I am free.