Mackinley's words:
shoes
chair
high chair
outside
meow
all done
water
lizard
kitty
muscles
awesome
picture
binkie
mama
other
Mickey
chicken
noodle
Really kid? What about boat, truck and ball? No, he wants to get to Supercalifragilisticexpialidocious as soon as possible.
His favorite foods right now:
Carnation Instant Breakfast w/ whole milk (vanilla only!)
French fries
Pasta with nothing on it
Special K blueberry fruit crisp bars
Pickles
Snap peas
Cantelope
Strawberries
Hamburger
Lil Smokies
Hash browns
Broccoli - he will run you down for this!!!
Happy Tot fruit or veggie pouches
Chicken
Taco meat
Cucumber
Tomato
Quaker Chewy bars
Chex cereal
His least favorite foods - right now anyway:
Cheese, which he loved 3 weeks ago
Mashed potatoes
Cake
Oatmeal and baby cereal
Nutrigrain bars, which he loved 2 months ago
Juice (only when constipated does he get this lol)
Mackinley is a climbing, running, hiding, sliding, laughing and cuddling machine. His favorite toys are his books...today we read the same one at least 65 times...thanks Little Pookie. He didn't touch one toy for 3 days this past week, he just wanted to empty every drawer, cabinet and shelf in the kitchen and bathroom. Our house looks like we were looted. All I do is pick up after him and as soon as I turn my back there are 3 strainers, 6 bowls, 2 cooling racks and a shelf back on the floor.
Poor Tate, our cat, has also taken quite a "beating" lately. Mac likes to pet him like he's a dog, so obviously he's very gentle haha. Tate has been very patient and puts up with it for a while and then runs for the door and meows like his life depends on it...who knows, it may one day!
I found myself the other day actually relaxed...like we had a "normal" baby. The most frustrating part of it all? I REALIZED I was relaxed which pulled me right out of it. It can be so frustrating to think that other parents just put their kid to bed at night knowing they will be waking up in the morning. We often, and by often I mean every night, fear that Mac will have a low blood sugar episode or something worse and not wake up in the morning. We fear that a common cold will take him from us or that we could have a natural disaster and not be able to obtain his medications that sustain his life.
This natural disaster one is a new fear. How will we get his hormones that keep him alive? If we do have them, how will we keep them refridgerated in a time with a prolonged power outage??? So while you may be worrying about how you will get diapers for your kid after an earthquake I could care less if mine has to pee on maxi pads but will wonder how fast he will die from lack of hormones that your child makes naturally. So yes, in my life there is more to fear than fear itself.
As I slowly tune in to what makes me tick as a mother to a child with special medical needs it also helps me to regulate my fears and function day to day. I know our family could have it worse off and most of all I know I would never wish this upon another family. Recognizing that we have more danger to deal with doesn't make it clear as to what the danger is, it just shows you that anything can create that creeping fear you get in the pit of your stomach.
One of the moms we met last year in Chicago at the Magic Foundation conference turned our world upside down.. We were told that Mac would only need his emergency shot and a rush to the ER if he had "trauma". Trauma could be a cold or the flu or a bee sting or a broken leg...pretty much anything! She told us that many times her son would just be watching tv and she would notice that he was so completely zoned out because his body had basically created a trauma and caused his blood sugar to drop. She tries to snap him out of it, he's not just zoned or focused on his tv show, he is about to possibly have a seizure or go into a coma. Plunging that needle into his leg is the only way to save him. So now I know, we have to constantly be aware of Mackinley's actions and reactions, these are signs of possible low blood sugar. So please don't tell me that things are "okay", just because he is not bleeding or screaming or passed out doesn't mean I can relax and sleep peacefully.
Well, you know I can relate to this 100%. We just had tornadoes here and afterwards all I could think was what would happen if our house was destroyed and along with it, all her medication. Of course the hospital would be available to us which then led me to wonder if something even more major happened what would we do. I try not to think about this too much because it's a worry I hope we never have to deal with. And I guess we'd deal with it when it comes about.
ReplyDeleteAll of worries are understandable. And we worry about them everyday too. We still check on Lily throughout the night! And still wake her up to eat in the middle of the night to keep her glucose up.
P.S. Great words!!! Muscle!?! haha love it :)
ReplyDeleteAnd, have to say, a little bit jealous that he has such an extensive list of foods he likes! But happy that he's eating, even if he's still a little picky ;)
As much as I would like to be able to I can't relate to what you have to deal with so I'm soooo glad you have been able to connect with people who can. @MommyBelle - thanks for staying in touch with Kelsey; I'm glad you have each other to vent to. And if you think saying "muscles" is good you should see him show you his muscles - that's HILARIOUS!
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