A brief look into our lives...
Jessica & Abbey (3/08)
Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks!
I hope I'm not pushing it by asking for more prayers :P
A very dear friend, Melissa (Joshie & Mia's Mom to those BBC Moms reading) lost her Mom 7 years ago, tomorrow. I cannot imagine. Please keep her in your prayers. Thanks!
** Logen hasn't had more than 1-2 seizures per day in over 2wks... but I am HATING the Keppra. Still not eating & the PT noticed some 'not so great' changes today. Will update after tomorrow's French Final. **
Funny little Logen went shopping. A & I were looking the other direction, discussing Christmas Lighting. Mr Logen was pulling on my coat tail, we both turn around and see "Santa Logen". Not only did we about fall over laughing b/c it was completely unexpected- we were so proud that he got the hat off the rack and managed to put it on his head PERFECTLY!!! I hurried to grab my phone for pictures. He was so stinkin' proud of himself. He wore it all over Lowe's. It was so precious.My lil' cousin said you can't spell stuDYING without dying. I lol'ed and then stole her sentence.
I have finals Friday, Saturday (at 7:30 AM!), & Monday... Oh, help me!
With everything going on in our lives, finals are coming at a really bad time. I am having an EXTREMELY hard time concentrating on studying. Pray for that too if you can!
Thanks for the continued prayers and kind comments. Love to you all!
I've gotten 2 messages today about young children who are praying for our sweet, beautiful Logen. As for prayers, I think we've started a Logen Movement. I cannot THANK YOU all nearly enough for the prayers. There's just something about the children who pray and they way they do it that tugs at my heart.
One of our little therapy buddies (who is near Logen in age) asked God "to take the yucky stuff away and make Logen healthy!!" Thank you little man J!
A mom & her lil' guy (who we know IRL) sent a message saying they pray for Logen every night. Thank you guys.
Please don't stop praying for Logen. Please.
... Many affected people need to live in a residential (adult foster care) group home when their parents are no longer able to care for them.
With children: Support in the home, a contact family or short-time respite care homes may provide valuable relief and rest for the family. The family may also require assistance in coordinating interventions.
With adults: they require continued support from a treatment and training center. They also need special housing, offering assistance in managing daily living skills and organizing activities.
I've looked and researched (I know, I said I wasn't going to do this) every possible syndrome, etc we discussed. EVERY one of them mentioned the above. It's heart breaking.
One of my best friends & I were joking (a few weeks ago) about our children, she'd had a rough day w/behavior, etc. She laughed and said something about 'when my daughter turns 18, she is so on her own!' If it hadn't have been this particular friend (or one of my other friends who have SN kids) I think it would have bothered me. I laughed back and said something like yes, Parker will be too!
How do I keep my sanity through this all? How do I make it ok for everybody? How am I suppose to feel and react? I don't even know. I've cried so many tears I don't think I can cry anymore. I'm becoming numb. And, my wonderful husband is Mr Optimistic. (Thank Jesus for him!!!) I wish I knew how to look at the bright side of everything like he does. And, what about Logen? What about HIM?
And, there's always that question of: What if he doesn't make it to adulthood?
So, we just ask for you to....
A & I had a "stocking' conversation last night. I love this man. He is always thinking about me & the boys. (except for that 1 week outta the year when he leaves us for the deer woods!)
J: Can you name a few little things you might want Santa to put in your stocking?
A: An Incredible Hulk Action Figure!!!!!!
J: Huh? (Pause. Think about it. Realize what just happened. Get it-> Logen has been eyeing a Hulk action figure....)
In the botton of A's sock, I bet Santa will bring him something green this year.
PLEASE Blog readers- PRAY for Logen. Ask your neighboor, your cashier at Target, the lady that walks the block on noon every day, your blog readers- whoever you can think of- we just are in need of some MAJOR prayers.
What are testing for now and what several Doctor's have spoken to us about is a genetic disease. I'd rather not mention the name at this point. The doctor's have given us info about it and we are trying not to research the web, it can be your enemy in some cases. A few of it's whatevers are- nonverbal (forever), shortened lifespan, seizures, it goes on to break my heart.
Blog Family, I dreamed (a nightmare!) I had to plan Logen's funeral last night. And inform people he was gone. I didn't sleep and I just cried. Please please pray with us- we do not want this to be what Logen has. The outcome is not desirable. A Mother is not suppose to outlive her child, you know?
I am Begging you all to pray. I don't know what else to do right now. The tests will take 3-4 weeks to come back. We meet with the Geneticist, Neuro, Urologist, and Surgen in 4 weeks. I may go crazy until then. Pray with us and for us. We love Logen and can't imagine life without him. I am so incredibly scared.
After odd behavior, seizure activity, a visit to the ped, and several phone conversations with his Neuro's nurse on Tuesday- it was decided that Logen needed to be admitted to the nearest Children's Hospital. (3.5 hour drive that took us about 5 hours)
He is still in the hospital. We've seen about 6 different doctor's today. The "main" Neuro spent over 2 hours with us in one sitting. At this point the testing he is doing is extensive. He is hooked up to an EEG machine. So far, we see constant brain wave abnormalities. When he was sleeping last night it was 'worse' or 'different'. He gave a specific term which I cannot remember. There's been so many 'new' words lately they are all running together.
I have mentioned the MRI differences in previous posts. The 1st MRI was abnormal. It was confirmed by several doctors that looked over both of them today- the 2nd one is 100% NORMAL. There is NO brain injury/scar, etc that shows up on an MRI. What this means: Yet another Dr that said- this is NOT Cerebral Palsy we are dealing with. We are not sure what Logen has. (I was asked if I'd ever talked to other CP parents or seen other CP kids. If I'd noticed differences. Um, yea. How long have we been saying this now?!?!?) We leave the CP dx for medical/treatment reasons I believe. B/c at this point we don't have a clue what it could be. They took 30cc of blood from little man this afternoon, who was pretty pale afterwords.
We are beginning with metabolic and genetic testing. Some of which have already been done. We are re-doing. We did an X-ray to show the bone age. Urine tests. I don't know. I haven't slept in close to 48 hours- so things are beginning to run together.
Our list of referrals thus far: Geneticist, Endocrinologist, Surgeon, Urologist, Neurogeneticist
Please pray for Logen. It's a very scary thing to not know what's going on with him. We've known this for a while now, since it's not a new thing to know 'I don't think we are dealing with typical CP or CP at all'.
Just Pray Blog Family. Just Pray.
Erin sent me a this:
The letter A. I need to name 10 things that start with a letter A. 
1) Applesauce, unless you are Parker and then you would say "Ass-e": Logen gets his seizure med mixed in applesauce (100% all natural, no sugar added of course!) 
2) Angel: the Guardian ones that help us make it through our day! Or the one on top of our Christmas tree.
3) Airplane, the boys first time on one. Click on the link to view pictures (theres about 8-10). I can't copy & paste them for some reason. 
4) Asparagus: 1 of Logen's (& mine) Favorite veggies! 
5) Ant: Little bug that always manages to finagle is way into the house during spring. Parker got pretty good at ant squishing in Florida this year! 
6) Automobile!!! The boys favorite toys include anything that has wheels! We also spend a great deal of time in our Automobile!
7) Arm: There are 8 arms in the above photo. 
8)Animal: There are 3 Animals in his house! I think Monkey would be an appropriate label for my little men.
9)A...: The month Adam & I got married.
10) A...: The month our precious Logen was born. (This picture also says, Yay! We made it through 10 A's)
**If you are interested in blogging a letter- comment & I'll email ya one!
