Thursday, April 2, 2015


here I am. No real set plans for Easter...may stick around or go to Jersey and see some family. uncertain.
Hope everyone is well..Im pretty tired today..have kiddo home with god knows what illness this time as she sleeps the day away only popping her head up if I put my head down so I give really.
Seizures have been the same at once a week I am spent. My surrender flag is up. Another G>I apointment next month and if there is little weight gain I want to try the tube..I cant take it. baby girl is 8! she gets sick so much and the seizures...ugh. will they ever stop?? her teeth have been bothering her too...not falling out...not growing in..I surrender to that too.
going to start making foods for madie...whatever I eat pure` that moe foe up! I have already made chicken noodle soup and apple sauce. yummm but will she eat them? prolly not but we shall see..
Can you pump in pure to the gtube? I wonder...
Anyhoo..not much to ramble about...Had Madies school meeting and her oral motor has been shot ouyt the door as of lately shehas no tolerance for any type of mush food in her mouth. nor will she let therapist touch her face...full meltdowns.
The meeting itself went saddens me when they say the kids spend less time with Madie as they get older and their brains are busy learning science and reading breaks my heart that Madie is the way she is...I wish we could have some kind of breakthru but truthfully shes 8 and still doesnt do the majority of things the other kids do..not even eating real food...I think for me hardest thing is her inability to!! I would buy her the best sneakers out there... my hopes diminish sometimes..I wish I knew. Getting her AFO'S has been suggested to us to help give her more support when she is in a stander as the backs of her ankles bend out like shes in a skiing position instead of being locked strait..so0o thats another thing...sigh.
she is certainly a girl who knows what she likes...and makes it known when things arent going her way. She is pretty ticklish too on her feet and loves noisy toys like rainsticks and vibrating light up things.
Ohh my little bug. Oh Mama..
Shes also a great hugger.
I dunno... I can hear my princess awake now and dont want to get her Hope everyone has a great Easter. I basically forgot about it till last week!
Till next Time.

1 comment:

Reagan Leigh said...

She DEFINITELY needs AFOs...I can't believe she hasn't already had 10pairs at this point! Also, get the tube already! It's obvious she's not interested in eating by mouth right now. It's not a permanent thing either, if she picks up her oral eating, you can take it out at any time (it seals up on its own)! You'll wonder why you waited so long. It's such a huge help in getting fluids and medicines in them...especially when they're sick! How much does Madie weigh? Reagan's 48lbs (and has been for 2ys now). They're not that concerned with her weight because what's the benefit of her being heavier at this point? It's harder on her fragile little bones and our backs! And she looks perfectly proportioned to me! Hang in there! Hoping Madie gets better soon!