Thursday, June 11, 2009

Aww Friday

Man, its been an absolutely exhausting week. Besides the emotional rollercoaster I've been on with Jax, its the boys last week of school. I swear I've been there everyday this week. For plays, parties, and Carters kindergarten graduation today. I will post pics of that tomorrow. They did the cutest program about space, thats what they've been learning about the last couple of weeks. I have mixed feelings about school being out. On one hand, I don't have to get them up, fight them to get ready, worry about homework, etc. But on the other hand, they will be home ALL DAY LONG. Yikes, I need to think of some serious things to keep them busy.



Sigh...


I've been emailing our hemo doc thats been helping us with Jax. He's been fantastic. Gathering all his scans and sending them all over, I'm grateful for his help. However, I'm feeling defeated right now. I have to more places I'm waiting to hear back from, but if no one is willing to help I don't know what we'll do. His siezures have been increasing from this. His last EEG looked like crap. But his neuro has already made it pretty clear that he doesn't know what else to do for him. He told us to schedule the next available appointment, which is in July, and he would fit us in sooner. Well I made the appointment, and then I got a voicemail from his secretary saying that the July appointment works for him. So much for getting us in sooner.


I think all of this is just telling me I need to move out of state soon. We need to get Jax to a decent childrens hospital. This one is supposed to be great, but we've had nothing but problems. And this hospital fell of the top ten list and is not even in the top twenty anymore. We were trying to get daddy through school first. California is an expensive place to live. And I want to live there comfortably. He is in school now, but he's looking into police academy's there that will pay him to go through the academy. So hopefully we can get out of here soon.

Tonight I was putting Jax jammies on, he was so cranky, I could tell he was tired. When I came out with his meds, this is what I found. Fast asleep on the family room floor.

My precious baby.

21 comments:

Mommy to those Special Ks said...

AWW! I LOVE sleeping baby pics!! SO precious! Move to Tennessee!!!! We have Vanderbilt Children's here!! And well, there's always US! LOL I know you're tired. It just shouldn't have to be this hard. :( Hang in there.

Junior said...

just precious, love the sleeping pictures.
Keeping you in our prayers

Shari said...

The pics are cute! Love the baby legs! We have two awesome children's hospitals here in Portland, OR! Doernbecher Children's and Emmanuel Legacy. They have excellent, cardiac, neuro, gi, etc. I hope that might help. Could you email me at slfunk3763@hotmail.com? I have a question I would like to ask you if it's OK.

Alison said...

So cute - A falls asleep on the floor all the time.

We have a great childrens hospital close to us, but I am guessing Australia is a bit further than you were thinking???

Denise said...

Hey Lacey.....I was just getting ready to respond about the blankie and then saw your latest post. I may be able to help you with some info on police academies but can you email me directly at adjvollmer@aol.com As for the blanket.....anything pink, bright and cheery, butterflies, berries you name it. Please tell Jax to hang in there for us!!!

The VW's said...

AWW, Jax looks so precious! Those babylegs are adorable! I want to pick him up and eat him up!

I hope that summer vacation goes well for your family! I am loving having our boys home, but it is a chore to keep them from being bored!

Praying that a doctor will get back to you soon with great news! I can only imagine how anxious you must be waiting for an answer! I'll be praying!!!

As for moving, doesn't Michigan sound like a great place to live?! :)

stephanie said...

Awww that little sweet man.I am praying for this to quickly resolve for you.Looks like we all want you! RI is small, but we have a good childrens hospital and we are near Boston, looks like Tennessee and Portland are bidding, and we sure know California is screaming for you, LOL!!

Good luck, with the kids, think off things to do, FAST, as you well know the natives get restless and can turn on you without warning.
Sending prayers to all.

Emily said...

Oh.... sweet little guy. You guys deserve some answers quickly. I pray that your situation will work out soon.

Alyson said...

Sleeping baby pics are the cutest!

ANewKindOfPerfect said...

Oh my, he is too cute sleeping there. I love his Baby Legs. :)

I am sorry you are so frustrated. We are here in SoCal as you know, and we LOVE Choc. I wonder if they could help Jaxson?

Rioux Family said...

Just out of curiousity...didn't the hospital here not do you any good either? When you came just for the hospital, it wasn't as good as you had hoped (that's what you said anyway) and this last time, wasn't California one of the first to say they couldn't do anything? I'm not trying to be rude, I'm honestly curious

Michelle said...

What great photos...he is such a precious boy! Hang in there, it will all work they way it's supposed to. Enjoy your weekend and relax my friend!

Heather said...

Still looking into starting that commune .... you'll be welcome to join us!!! Seriously though,I so wish I had the answers of the words for you.Having Jax in this state of limbo,medically speaking,must be overwhelming and stressful.Infact,I know it is.Keep doing what your doing.Ir is truly about all you can do.You are being proactive,putting out feelers and most importantly,keeping your family rolling.Things will work out.You need to,even in these lowest moments,you need to keep the faith and remain hopeful and put one foot in front of the other and keep on keeping.California is calling and we would do anything and everything for you all and sweet Jax if we could.

Stephanie said...

Summer vacation.... it's one of those love/hate relationships.

I'm hoping Aiden will take a nap, he was up before 7 this morning, but not sure if I'll be able to stay awake long enough myself to take pictures LOL

Aspiemom said...

He looks so sweet sleeping there!

Yes, TN is great! I live in Chickamauga, GA, which is just over the line and 20 min. from Chattanooga. We have a good children's hospt. in Chattanooga (TC Thompson), plus we have Emory in Atlanta and I go to Vanderbilt CF clinic in Nashville.

My Three Sons said...

Jaxson just looks sooo cute! You can always come to Kansas City, they have a great police dept and Children's Mercy is on the top 10!

Hoping your weekend gets a little better.

Michelle said...

when you get a chance, email me the details for Tuesday...first surgery for what and then let me know the best time to come visit...I would love to come see you, come check on all of you while you are in the hospital. Let me know: mtherklesen@yahoo.com

Stephanie said...

Hi sweetie, to answer your question, it's just ear tubes, nothing major. I posted about it a few days back. You know I believe in signs. The fact that Jax is such a fighter and those around him who should be fighting for him aren't.. well, that's sign enough for me. Nothing can ever be easy right?
There are wonderful doctors and hospitals out there, we have one here in Florida thank God. I don't know what I would do if we didn't. You've been amazing the way you're fighting for him, you deserve for the docs to be on your side for a change.
That's their job for crying out loud!
I wish there was something I could do to help, Florida is kind of far away I know, but let me know if I can do anything.

jjpsmommy07 said...

What a precious little boy you have. He looks so sweet in that picture. I really hope you get some help soon. Continuing to keep you guys in my prayers.

Melissa said...

Jax, I want to pick you up & HUG YOU & HOLD YOU FOR A VERY LONG TIME!!!
I can't tell you how sorry I am for everything that you're going through Lacey...Please hang in there & just try to stay possitive. My prayers are with you & BOSTON!!!
lOVE & HUGS!

Ruby's Mom said...

Jax is so precious!I would love to be able to hold and cuddle him :)