Well we made it thru a bad day yesterday...Madie had two bad seizures...dunno. whew. Just glad she is in a better mood tonight and over that terrible day. She is doing great eating her ketocal lately too...we had to UP the Miralax and sure enough the past few days she has been pooping. WHEW. Amazing how much better her mood is when she simply GOES...haha. I am going to see if there is anything else I can add to her Ketocal instead of Apple Juice as they (doctors) suggested. Apple Juice has not been very stomach friendly. She has been back to her usual self today making her noises and giggling and rolling her tongue really fast and making very impressive hand farts...LOL
Been taking it easy today..we had a little snow yesterday evening giving us maybe 2-3 inches which was not to hard to shovel. I am so done with winter its been terrible!
Our Basement was checked out by the insurance guy and now we wait with fans running to dry the wall. We sure learned our lesson that we need to really get on the ball with snow removal from the roof and deck.
Well today is another day. That bad seizure day was Sunday...its Tuesday now..sigh.
I am frustrated at winter right now. I long for the warm breezes and green grass and BBQ's and reading my books on the deck...*sigh...
My Brain is scrambled eggs when it comes to entertaining Madie today. She is sitting on her blanket making her usual happy noises and eating her toys etc etc..but I feel like I should be down on the floor always interacting with her..I mean this is my child! Am I being neglectful when I retreat to the laptop to play a word find game or type an e-mail or blog?? I would give anything to just sit with Madie and color or do some finger paints or go play in the snow..or toss a ball or ANYTHING. :(
Yeah. Feeling Bummed out in my world of Developmentally Delayed Children..:( How oh How can such a perfect little girl have so many issues..Ok Issues is a bad term to use..but you get me right?
I guess the winter blues are bringing me into the mourning of the quote "normal" child..which comes and goes..But I do have a pretty good acceptance that my child has seizures and that she is delayed in MANY things..its just frustrating. Will she progress at all?? Is she going to be a 12 year old in diapers? is she going to be in her chair when she gets older or are we going to shop for some sweet little New Balance sneakers? (like her mamas) No one knows. And I HATE that. I am a list maker. A planner. I like to know what to expect. I like to have things all set before entertaining...like if we have a BBQ I am making all the salads the day before and getting all the things set up on the counter ready as it can be so I have minimal kitchen time when friends arrive. I make lists all the time. Sadly I forget to bring my lists half the time...lol. When we go on trips big ones like a vacation (sigh..what are those) I am making list upon list of what to bring. Scary yes. But eases my anxiety...lol
SO in a nutshell I TRY not to think TOO TOO hard about Madies future and take one day at a time. When one day turns into a week and a month and a year..and she is yet to do some things that I so hoped for months ago...I worry. I freak out. I mean what if by some crazy twist of fate I were to get preggo again? OMG I would have a nervous breakdown caring for two children. And whos to say that that new child wouldn't be disabled as well?? Ok no more talk about that!
I have been doing well with the whole no wine drinking as well...I had a couple glasses on Sunday at dinner but that for me is good. Yeah yeah yeah... I know. lol This mama needed it. Food was great and conversations were full of laughs... Its what I needed. Maybe just the night out. (well I went to Miles' cousins house...lol) BUt anyhooooo Yeah so a couple glasses of wine...so sue me.
Miles stayed home with Madie that night who was in the mist of meltdown number 60..and I thank him greatly for that. SOMEDAY we will both get out together have a glass of wine and have US time...not worrying about Madie and her meds etc etc...YEAH...
I long to be back on that beach in Mexico..:) Such simple times.
Well I guess I am done rambling. Another week of Preschool tomorrow and hoping that madie has a better week than last.
Hope everyone is well and hangin in there. heck I know I am.
Till next time.
1 comment:
Hang in there. I know those "mourning" days come and go. I have them often myself -especially now. I had been waiting and waiting on surgery to give me my boy back. Things were supposed to be looking up by now. But here we are, still playing the med game, still wondering what tomorrow will bring. Ugh.
We definitely need our breaks though. We cannot do this day in and day out without them. Anything you can find to give yourself a mental break occasionally is good for both you and Madie, so don't feel guilty.
By the way, Spring is right around the corner!! :D
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