If I told you we ran away, would you believe me?
We didn’t run, but I’ve thought about it over the last few weeks.
We often say things along the lines of “If we can just get through the next couple of weeks, things will level out a little.”
When am I going to learn that leveling out is not part of our make up?!?
Since my last post we have started with a new Speech Therapist (Mrs. Barb…we love her!), started going to an outside facility for Occupational Therapy (working with Mr. Brandon), we’ve seen the neurologist, ENT, Pediatrician (multiple times), Gastroenterologist, Genetics, had lab work done multiple times and had our Ketogenic Diet follow up.
I think we’ve covered just about all of Logan’s doctors in this month, but he has had great follow up appointments! Everyone is so excited that he is doing so well, and a little surprised, I have to admit. He just doesn’t fit any template that they may have for kids like him.
What a beautiful thing!
Not only are his appointments going well, but his therapies are going even better! He is coming to life so much more each and every day, it is so exciting to see.
I’ll try and post a video at some point that Fred took during one of Logan’s PT sessions. It may be hard to appreciate just what he is doing, but basically he is straightening his legs, putting weight on his little feet and standing on his own.
It’s brief, it’s not without help, but he’s doing it!
And then there is speech. Unreal to see him progress! We have this communication board now that is basically laminated pictures, but it is helping him to communicate and to learn how to communicate with us and us with him. You can literally SEE the wheels turning, his little eyes light up and him come to life because he is doing it! He knows what he wants to do so often, but just can’t make it happen. At least for a brief few minutes, and with those cards, he can make it all happen.
He’s also rolling! Did I mention that before? ROLLING OVER! It’s only his right side right now, and he has trouble getting his arm out from under him, but he basically will not lay or sleep on his back anymore.
The miracles just keep coming! Praise GOD!
There are times at night when I have to go in and either change his diaper or just help him change positions (he can’t roll back over yet once he’s on his tummy) and he is somewhat wide awake. I have finally learned to forget about the sleep and completely embrace these moments. What a blessing and a joy it is to smile, “talk” and sometimes laugh with my baby boy in the middle of the night. We exchange looks and then smile together. I tell him he has to be quiet because everyone is sleeping and he talks even louder. There has never been a gift more precious!
As much as I can go on and on about Logan, Freddie deserves his very own post! I am in amazement at that sweet child every single day. What a blessing and a joy he is, even in the not so joyous times!
Dinosaurs are the newest thing. Well, dinosaurs and sea creatures. But I think I’ll leave those details for another post. They are too precious to minimize. I’m sure by then I’ll have even more stories!
We have this applique on our wall at home that says “We don’t remember days, we remember moments.” I’ve never known anything to be more true. There are moments, literally brief moments when I am so overjoyed at my life and all that God has blessed us with that I can’t imagine it could ever be better.
There are times that those moments are brought to a screeching halt with some form of evilness that threatens to derail us, but we keep getting those moments and that is what matters.
I also have my breakdowns too….they are lovely. I lose all of my patience with Freddie, think everyone that is trying to help me is actually out to get me, I am convinced that not one person in this world truly cares about us and I know without a doubt that things are only going to get worse.
Then I cry.
Those beautiful, sobbing, makeup running, nose blowing, couldn’t feel sorrier for myself crying sessions where you are sure the world is approaching its end and you are experiencing all of the pain that is associated with it.
And then…another moment passes.
The sun is shining again. Freddie has been on a walk with Nana and they had a wonderful adventure. The nurse has Logan gazing out at the lake and playing with his toys, completely content. Not one, but multiple people show they care and you realize things haven’t changed. Just your view of them has.
I’m learning that if I let myself completely fall apart and have my pity party, as brief as possible preferably, then things miraculously get better….and better and better.
As I was finishing this post we arrived in DC for an Epilepsy Benefit. We were able to have a nurse come for evening hours and somehow talk Nana and Papa into watching the boys while we were gone....overnight....together....both Fred and me...overnight...a plane ride away. Still can’t believe we made it all happen. But it was so wonderful.
Attending a fundraiser with other people who have loved ones suffering from the same thing your baby boys suffers from and then realizing that this event is raising money to hopefully find a cure for that dreaded condition....that your child suffers from as well. I say that twice because it hit me almost like that. I knew we were going to an Epilepsy benefit, but as the videos were playing and people were telling to story of their lives and their battles with seizures, it began to settle in again that this is also our life. Even though Logan is controlled right now, he still suffers from Epilepsy.
It’s a good thing to keep in perspective and to not lose sight of, because it is our life, part of our life and that will not change. It’s not horrible, it’s not wonderful, it is just a part of who we are.
As weird as it sounds, there is something comforting about accepting where you are in life, even if it’s not where you ideally want to be.
The trip was great and everyone did so well while we were gone. Not that we thought they wouldn’t!
We are so thankful for the time together, the money raised for research to help so many deserving families and an uneventful couple of days here at home.
I’m off to bed now since two out of three boys are sleeping. Both on their tummies I imagine!
Sweet dreams sweet boys!!! I love you so much!
There are times at night when I have to go in and either change his diaper or just help him change positions (he can’t roll back over yet once he’s on his tummy) and he is somewhat wide awake. I have finally learned to forget about the sleep and completely embrace these moments. What a blessing and a joy it is to smile, “talk” and sometimes laugh with my baby boy in the middle of the night. We exchange looks and then smile together. I tell him he has to be quiet because everyone is sleeping and he talks even louder. There has never been a gift more precious!
As much as I can go on and on about Logan, Freddie deserves his very own post! I am in amazement at that sweet child every single day. What a blessing and a joy he is, even in the not so joyous times!
Dinosaurs are the newest thing. Well, dinosaurs and sea creatures. But I think I’ll leave those details for another post. They are too precious to minimize. I’m sure by then I’ll have even more stories!
We have this applique on our wall at home that says “We don’t remember days, we remember moments.” I’ve never known anything to be more true. There are moments, literally brief moments when I am so overjoyed at my life and all that God has blessed us with that I can’t imagine it could ever be better.
There are times that those moments are brought to a screeching halt with some form of evilness that threatens to derail us, but we keep getting those moments and that is what matters.
I also have my breakdowns too….they are lovely. I lose all of my patience with Freddie, think everyone that is trying to help me is actually out to get me, I am convinced that not one person in this world truly cares about us and I know without a doubt that things are only going to get worse.
Then I cry.
Those beautiful, sobbing, makeup running, nose blowing, couldn’t feel sorrier for myself crying sessions where you are sure the world is approaching its end and you are experiencing all of the pain that is associated with it.
And then…another moment passes.
The sun is shining again. Freddie has been on a walk with Nana and they had a wonderful adventure. The nurse has Logan gazing out at the lake and playing with his toys, completely content. Not one, but multiple people show they care and you realize things haven’t changed. Just your view of them has.
I’m learning that if I let myself completely fall apart and have my pity party, as brief as possible preferably, then things miraculously get better….and better and better.
As I was finishing this post we arrived in DC for an Epilepsy Benefit. We were able to have a nurse come for evening hours and somehow talk Nana and Papa into watching the boys while we were gone....overnight....together....both Fred and me...overnight...a plane ride away. Still can’t believe we made it all happen. But it was so wonderful.
Attending a fundraiser with other people who have loved ones suffering from the same thing your baby boys suffers from and then realizing that this event is raising money to hopefully find a cure for that dreaded condition....that your child suffers from as well. I say that twice because it hit me almost like that. I knew we were going to an Epilepsy benefit, but as the videos were playing and people were telling to story of their lives and their battles with seizures, it began to settle in again that this is also our life. Even though Logan is controlled right now, he still suffers from Epilepsy.
It’s a good thing to keep in perspective and to not lose sight of, because it is our life, part of our life and that will not change. It’s not horrible, it’s not wonderful, it is just a part of who we are.
As weird as it sounds, there is something comforting about accepting where you are in life, even if it’s not where you ideally want to be.
The trip was great and everyone did so well while we were gone. Not that we thought they wouldn’t!
We are so thankful for the time together, the money raised for research to help so many deserving families and an uneventful couple of days here at home.
I’m off to bed now since two out of three boys are sleeping. Both on their tummies I imagine!
Sweet dreams sweet boys!!! I love you so much!
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