Thursday, October 02, 2008

Hiatus?!

So... sometimes I say things and then I change my mind. In truth, I like my blog much, much better than the CaringBridge site. CB is so clinical... I prefer it here with my funky background and ability to put pictures with words.

Yesterday I was a little fried. It's been a long three weeks here. Luke's been gone a lot, I've been dealing with medicaid (I deleted that post, it was angry and political, two things I'd rather not have here). Sometimes I feel a little critiqued because I choose to share parts of my world here, and I was feeling uncomfortable with some people looking in. Then I thought about it and I figured, what the heck? People will think what they want to regardless of what I put in my public journal or not.

That and we have so many faithful prayer warriors, I cannot think of leaving all of you out of the loop. Your prayers have blessed us, it would be hard to do our thing without the support of so many, so I changed my mind. That and I'm a girl, I'm allowed to change my mind as often as I want ;)

Josie is doing great, no more fever! She's handling preK like a champ and though she was wimpy at soccer practice on Tuesday she did have fun so that counts for something. She is excited to go to her game on Saturday, excited to have her cousin's J and J visit us, and excited to have lunch with Uncle Mickey. She got a new t shirt with Strawberry Shortcake on it, old school, not the new look but the Strawberry Shortcake from when I was little. She loves it. She wants to wear it every day. It is dirty, guess how happy that makes her?
Marie is doing alright, she is trying to cut three molars at once. The bottom left came through end of last week but the other three haven't and they're hurting her. Yesterday she had a bad day, stiff a lot, no appetite, fussy, unable to settle down to nap or sleep until her Tylenol kicked in. She needed held a lot.

The past few nights Marie has had a few episodes that have alarmed Luke and I, adding to my overall neurosis. She will wake from a sound sleep stiff as a board, arching her back with a very rapid heart rate (too fast to count) and breathing almost as if she is hyperventilating. It's no good. It's so scary when she does things we've never seen before. I've got a call in to nuero, hopefully we figure it out. It seems like something really hurts, and I hate that.

She's also started to have more trouble eating by mouth. The act of swallowing is so complex, and she struggles with that. It's hard to see her choking more and more, and really be unable to help. It is nice to see that she still really enjoys food, so we'll make due. We have had to stop giving her bits of Hershey kisses, and dum dum's are sometimes a little scary because she will bite the sucker off the stick. If you have any ideas of a safe candy we could try please let me know!

Saturday will be a big day, I am going to go to S-town by myself with the girls. W e have to go to Wal Mart (ugh) and then soccer and lunch. It's the first time I've done this in over a year. I will be brave. I will have my baby sling, it is my security blanket (and Marie likes to hang out in there). Now all I need is some sort of neon sign letting strangers know "Don't Touch My Baby!".

So, please pray that Marie's new episodes stop, we're going to up her movement disorder med a little to hopefully stop it. Pray too that those teeth come through! Much Love-

Little Miss Sunshine and Little Miss Naughty.











9 comments:

Michaelene said...

I am, personally, very glad that your hiatus was so short lived ... I miss you when you run away ;) But I do understand.
Thanks for the updates, how incredibly heartbreaking and frightening what's going on with Marie. Something woke me in the middle of the night, last night, and it was all I could do to not send you an email. The little voice ... begging for Prayers for Marie, so I obeyed and fell back into slumber Praying for that sweet girl. I'm feeling a bit overwhelmed with everything going on, here, but I've not forgotten about you guys. Just a little 'lax on sending emails and spending much less time on the computer, more time in Prayer. Sending all of you much love and precious Prayers...

Anonymous said...

I too am glad your hiatus was a short one! I was a little worried :( I love the old school Strawberry Shortcake...ahhh the memories! I found Fin a Smurf shirt that was like the one I used to have! I love it more than she does! I am keeping you all in my prayers and hoping that Marie isn't in pain! I bet it is the Hershey strike you have her on! Have you tried letting her lick on Jolly Rancher sticks? You could hold the stick while she licks on it. It is just a thought. I am the queen of junk food/sugar addiction so if anything safer comes to mind I'll post it for you. Keeping you all in my prayers!!!

Melinda in VA

RC said...

I knew it! Shannon, beautiful pictures. Glad you will keep sharing:)

Briar said...

Hi Shannon,

I have posted before - I discovered you 6 months ago on Shape of a Mother. I just read your post about choking. I'm an OT in northern Alberta, and one thing I have used with little ones that struggle with swallowing is those food mesh bags that you can put solids into and the kids can suck out the flavour without risk of choking. They are advertised to be used when kids are learning to take solids. I've never used them with my daughter because I thought were kind of a gimic. But with kids with poor swallow they are pretty cool. I'll post the link for you to take a peek. Our drugstore in Peace River actually sells them, so let me know if you are interested and can't find them in the US (WalMart and such usually don't sell them - more boutiquy type things only do) I can send you one. If not interested - no worries. Just thought I would share. Was wondering if kisses could be put in and dissolved as she sucks it out. Good luck! http://www.superbabystore.com/shopping/safefeeder/BSFfeedpkg_large.jpg

Again - you are in my prayers. Your story has resonated with me.

Briar Shaw

The VW's said...

Adorable pictures! I'll be praying for you and your sweet girl!

Holly said...

Sweet Girls!
I am glad you are back... no worries on your last blog you are honest and transparent! A beautiful person! I share your frustrations not judge you. Whatever you feel though. You are aloud to change your mind as much as you'd like.
Know that you are in our prayers.
Keep us updated with what the neuro says... she is still of seizure meds right?
I am glad Josie is feeling better and I tell that girl to enjoy soccer for us! Sophia has made a firm decision to NOT play soccer anymore... lol, maybe next year. We are sticking with ballet for now.
God Bless! Have a good week.

Tonya said...

Hey there, FRIEND!

Yes, it would be WONDERFUL to have a place just to get away! O=-)

Hey, as for going out in town with your girls... give that "mean Mama glare" if they come close. HEHEHE..

I used to put those little mitten things on our boys when they were newborns because for some odd reason, complete strangers would walk up and grab their little hands. (We ALL know that the first thing a baby will do is suck that fat little fist!)

Anyway.. and on a more serious note.. don't feel bad for trying to protect your little angel. You're just being a GREAT MOM!

Tamara said...

Hey there, so totally understand that Hiatus... sometimes they are much needed and welcomed. We all understand at least I do in more ways than ya know. hey an idea for the candy thing... get one of those thingys that has a little circle gripper and the tops screws off. The top has a net so you can put fruit or whatever in it and the child can choke on big peices. Do you understand what I am talking about? they have them a babies R us. Not sure if WalMart or Target does. If you don't let me know and I will send you one! Abby has two and never used either one. They were made by a dad that didn't want his child to choke on fruit. They are really COOL!

I will be praying for Marie! I am so sorry she is having these! Praying for a solution!

Love ya, Tam

shan said...

Thanks everyone for the idea of the mesh food thing. I actually have one in the silverware drawer and haven't used it in forever. I'll try putting Hershey's in there!