Christmas has come and gone...oh the FOOD....belly bombing food.....awwww the cheese cake and the munchies and the ham... time to start my diet...oh....now. The rain and the sudden near 60 temps have melted allll the snow we got...still left with the dirty piles from our shoveling...:(
Little Madison got a few cool memorable presents..it really was all about her! Dad was up till 1130 putting together her new Dollhouse bookshelf that surprised me set up in her room the morning of..:P We also got Madie a new stroller since her other one was reeally falling apart..the wheels were falling off and at times wobbled so hard that they looked as if they would go spinning away as we cruised around the store..eek! It sits her up alot better with a harder backing than the other so she is not so reclined...but its sturdy as well...yippie!
Grandma got her this cool light up lulliby toy that turns slowly and lights up the whole room with shapes and animals and swirlys...oh thee best! Also some cute comfy little outfits and for mom and dad she got us some barstools for our kitchen that look great!
Hubby and I kept things low budget but it was all good..shopping for family alone is a good dent in the funds as is....
Madie continues to be Seizure Free...she is at times a sleepy girl due to her lack of sleep in the evening...she seems to just take one huge chunk of a nap in the AM and then the rest of the day she is up...at times sleepy but not about to go to sleep..I got her down to be at 930 last night...!
I continue to hold my breath....Saturday we saw a couple of twitches but nothing since...dunno..I wanted to scream when I saw those arms go out for a split second in the cris cross...hmmmm Ill call the neuro this week if I see more....SAME TIME last year when Spasms came back...
Well anyhoo...dunno what to do with myself today...kinda tired..hopefully madie will wake from her nap happy and hungry...getting even the Pediasure down the hatch has become a challenge...she is just not hungry!! ugh.No one listens to me when I tell them it may be her Zonegran curving her appetite...Dunno..a year of seizures and drugs can take a toll on little tummys...she'll get there....*sigh*
We look forward to one more christmas party with my side of the family...truckin out to South Jersey (a 3 hour ride) to enjoy some of my Aunt Pats cooking and Games! How my family works it..Ok My Grandma(who is 80 and goes to Atlantic City on some weekends...lol)(full of life!).....shops all year for christmas..she gets these raffle tickets and we play cool games to win presents...anything from..oh gosh....gift cards to a new pot and pan! LOL its so fun and we always leave with a car full of stuff!! Sometimes when we are all done we do swaps with each other if we won something that we wont use....
God bless my Grandma....she is so awesome. I cant wait!! God Bless Aunt Pat for all that cooking!!
Well I guess I better start my day huh.?...Hubby and I want to go see a movie tonight...maybe the Will Smith Movie or the Benjamin Buttons movie...unsure yet...:)
Hugs
Jamie
2 comments:
Holy cow!! Still seizure free!!! I'm so excited and soooo hopeful that you've seen the last of those nasty seizures!
Sounds like you all had a great Christmas! What better gift than NO SEIZURES could you have gotten??
Hang in there girl...it's looking up!
Holli
Hello Jamie,
Goodness Maddie reminds me of my beautiful daughter when she was little.
Has Maddie been tested for CDKL5?
Have a look at our website
http://www.cdkl5.com
I am sure you will see what I mean.
Please feel free to join our support group if you want to know more.
Regards,
Leita.
Post a Comment