Wanted to share some GREAT news we received yesterday. We had recently applied for a grant through First Hand Foundation to pay for some extra therapies for Luke. We've been tremendously blessed in that ALL of Luke's therapy up to this point has been paid for by insurance and/or our state Early Intervention program. All....as in 100%.
But I've been thinking and watching and learning and researching and praying....and realizing that there are some alternative therapies that would benefit Luke that are not covered by insurance. They're effective. They're scientifically proven. And they're pricey.
So, in this super-amazing mom's group that I'm apart of, there's a friend that told me about First Hand Foundation and encouraged me to apply.
We did.
And yesterday we found out that Luke was approved!!!!!
For about $3,800 worth of therapy.
We are elated and feel so, so very blessed!!
I promise I'll fill you in on the rest of the details soon. Can't wait to share what our little guys are up to these days.
"Give thanks in all circumstances for this is God's will for you in Jesus Christ." I Thessalonians 5:18
Love this little video...Reminds me a lot of what I've been thinking about lately. I have SO much to be thankful for this year. So many good things have happened in our lives lately. And I'm thankful for them. I can truly say that I also thank God for the nightmarish days we were living this time last year. Seizure-ridden. Zero answers from the doctors. A very uncertain future. I can thank God for those horrible NICU days when it seemed nothing was going the way it should and we were scared about what tomorrow might bring. I'm thankful for these "temporary" sufferings because they opened my eyes and heart to God's true character. They allowed us to be close....so close to our Father. I really believe there's a fellowship with Him that we enjoy during our suffering that we don't at other times. The difficult times allowed us to see each other's strength....our fighting spirits, our enduring faith, our perseverance. They allowed us to come face to face with our weakness. For when you are weak, then He is strong.
I stop and I say Thank You. For Everything. For Every Circumstance. Thank You.
So, I've learned to ask what he wants before I get the food all ready and he just sits and stares at it. Almost always, he'll tell me what he wants and it's usually something I can live with.
This is the conversation I'm having right now.....
"Caleb, you want an egg?
'Nope'
"Do you want some soup?"
'Nope'
"Some cereal?"
'Nope'
"A pear?"
'Nope'
"Some cheese?"
'Nope'
"Well, what do you want to eat for dinner, Caleb?"
'UUUUUhhhhmmmm, let's seeeeee..' followed by silence.
Andrew kindly brought this home to me the other day....
He brought special attention to this fine print......
Don't get your hopes up, honey.
P.S. Author's note: I really am giving the B-vitamins a try. Heard great things about the energy-giving punch these guys have. I'm also going to be drinking green tea. More of this and less coffee (notice I didn't say NO coffee...just less coffee. *wink*) Lord knows, this momma could use all the energy she can get. I'll keep you posted.
So, it turns out the 2-year old molars are as brutal as their reputation makes them out to be. At least I think that's what Luke's issue is these days. Restless nights, refusal to eat, stuffy nose, intense puppy-like chewing and biting on anything he can sink those teeth into. It's gotta be teething right? Poor guy. And the beloved teething tablets we used to use at night have been recalled. Bummer.
It's been months since I've rocked my babies in the middle of the night. But, I was just in Luke's room doing just that. And while I am somewhat on the exhausted side, I so enjoyed holding my sweet baby. Feeling his little nose on my neck. Hearing his little breaths in my ear.
Rocking and humming and giggling and thinking......and thanking..
For the past two years October has been downright awful for us.
One year ago today, we traveled to St. Louis to hear a team of doctors diagnose Luke with Infantile Spasms. "This is rare. This is catastrophic. His prognosis is very, very, very, very poor. The seizures have to be stopped, although we should warn you, they aren't easily controlled. In fact, sometimes never controlled." We'll never forget that day.
Two years ago today, we were sitting in the NICU. The emotions and hour by hour stress of those days are almost too much to even think about. Luke's perforated intestines had been raging with infection. We watched his belly swell and the skin redden. Nurses would leave his bedside in tears. Doctors would order kangaroo care, not because Luke was healthy enough to be out of his incubator to be held, but because it was likely this would be our last time to hold him. During that month also, Luke's brain bleed caused hydrocephalus. Fluid was building up in his brain and a surgery was scheduled to put a shunt in to relieve the pressure. It was one thing after another that October. Two babies the hospital, two tired parents, a team of doctors and nurses working like crazy to do the best they could for our 2 pound miracles.
And here we are....it's October again. Caleb is a tall, energetic, feisty 2-year old ready to take over the world. Luke is completing 8 months of seizure freedom. His intestines healed. His shunt surgery never happened. His vision has improved. He's army crawling all over the living room and has the most adorable belly laugh. If you ask him how old he is, he'll tell you "Two" and spats off a handful of other words. We've spent the last month eating birthday cake and going to the pumpkin patch and swinging at the park.
I've been thinking so much this past month about suffering and struggle. About how much it changes us. We want out of it so quickly. But God has something different in mind. The past two years have allowed us a closeness and intimacy with Christ that we've never known before. After all, He is close to the broken-hearted. It's allowed us to see in each other a strength and endurance that we never knew was there. It's offered us a beautiful interaction with the Body of Christ. It's given us a chance to tell others what God has miraculously done. It's given us more compassion. ...a chance to be comforted so that we may comfort others. It's given a great longing for Heaven...where all will be made new and whole and perfect.
Loving this song right now.
Life really isn't a snapshot. If we looked at snapshots from the past two years, some would seem so hopeless, so painful. But, it wasn't the end of the story. God still had so much to accomplish..and still does. Whatever you're going through, just remember, it's not the end. Press on and fight the good fight!!!
I decided to keep our boys rear-facing when they turned a year old. I had told Andrew that I did some research and that it was the safest choice. Now the boys are two and they're still rear-facing. The subject came up yesterday and Andrew asked to see some of the research I had read. I said, "Just Google it. You'll find all kinds of stuff." There's lots of convincing evidence out there. What's crazy to me, is that my pediatrician has never mentioned this to me. I've never seen any literature about it or any commercials on TV......nothing to educate parents on what to me seems like very important information to have. Maybe others of you have and I just haven't been paying attention....?
Anyway, here's just one of several videos we watched yesterday as we were looking through stuff online about this topic. Everyone has to make the choice for themselves. But, I think everyone should at least be told what the research shows.
**You'll see clips from the dummy crash test in this video. That's what convinced me!! Luke and Caleb will be rear-facing until they weigh 35 pounds. (unless I can find a car seat with a higher rear-facing weight limit!
I just got back from the grocery store. At the checkout counter, the customer behind me came and stood at my side and said, "Could I have the honor of paying for your groceries today?"
I smile and say, "You don't need to do that."
"But I want to," she says.
I agree and my eyes start to tear up. My cashier is a sweet middle-aged lady from Eastern Europe. Overhearing our conversation, she looks at me over her reading glasses and says, "Let me tell you something. This is why I came to this country."
I'm standing there looking at the items being scanned...diapers and meat...one of the more expensive grocery visits of the month.
The lady behind me comes over again and puts her hand on my shoulder and says, "I've had two miracles in the past two days. My husband has been declared cancer free and so has my friend. I just want to pay this forward."
I'm just reminded again how aware God is of our needs. There is no end to His faithfulness!!!
