My Family

My Family

Wednesday, June 12, 2013

Odds and Ends

It has been crazy busy around here.  It always is, but with Marvin home for the summer and things really get busy!

I have built tents, played cars, slipped in school work, and started swimming lessons.  Not me, Marvin. They are not going to well.  HE is screaming and trying to claw the lifeguards eyes out in the pool so you get a nice picture of him playing in a tent.  

Plus, add to that all of Cary's appointments, therapies, and daily modifications that need to be made and it can be really crazy around here.

Back a few months ago when Cary came home to live with us I was with her.  All the time.  I was so scared something was going to happen to her.  When I brought groceries and stuff in the house I would carry her in one arm and the bags in another.  I brought her back and forth to the car with me terrified to leave her for one second where I could not see her.  She was so fragile and we had already come so close to loosing her once.

So the time passed.  I loved my family, but I spent most of my time with Cary.  Marvin had school so he was busy and Shannon worked, but I kind of felt I was loosing touch with them and the outside world in general.  The only people I saw were doctors and Cary's early intervention team.  When the PT noticed this she started asking questions.  She told me about personal attendants and the help they can give kids like Cary.  Most have medical backgrounds.  It is sort of like a babysitter with a nursing degree.

I resisted, of course.  I HATE asking for help.  You could come by and I would be hanging by a branch with a ring of fire under me and natives pointing spears at me and ask me how I am.  I would tell you fine I am enjoying the warmth, building upper body strength and learning about a new culture all at once.  You get the idea.  I will never openly admit to being weak or needing help.

Luckily, Cary's PT is pretty sharp.  She wore me out, which is what you basically have to do with me.  So I applied to the program.  And got an aid.  Her name is Amber.  She is funny, smart, and doesn't put up with my crap.  She also makes me leave my daughter.  I remember the first time I went grocery shopping without them.  Amber had been with us for about two weeks and I had yet to leave my daughter alone with the poor woman.  It was raining and Amber put her foot down.  She insisted that the rain isn't good for Cary and she really didn't want to watch me shop.  She then handed me my keys, purse, list, and phone, opened the door, smiled at me and told me to have fun.

So I did.  It wasn't an overnight process, but I did learn to leave my child.  Cary threw up all over Amber that day, but it was all OK.  Amber has been great.  I now have time for Marvin and Shannon. Plus when I go to doctor's appointments and have to take Cary's 10 million medical necessities with me Amber has come in handy.  I feel like I have a life again and it feels pretty darn good.

We also have been running around like crazy to Doctors.  It comes around every 3 months and we get slammed with appointments.  Cary went to the neurologist where she was pronounced a fine specimen of babyhood.  I bragged about how she is almost sitting, putting weight on her legs, and of course my darling angel refused to cooperate and acted like a limp rag the whole time.  Great.  The only amusing highlight of the visit was looking at the ads on the computer and the hot linen tip of the month.  I'm not kidding.  Apparently washcloth abuse is rampant at VCU and Wally the Washcloth is the linen spokesperson and asks that we all be considerate and not send them to the chutes of doom.  I could not stop laughing.  This stuff is just too stupid to make up.

Cary also continues to have PT, speech, and vision weekly.  We have a new speech and vision person.  I miss Becky, but I really like Ms. J.  She is awesome!  And I picked Ms. K.  Cary enjoys both of them.  When not trying to actively regurgitate on them.

We also have decided to add OT after an evaluation and we go to feeding clinic.  We have to wait for an OT slot, but we go to feeding clinic once a week.  It is a long trek, but well worth it.

Cary had an NG tube when she came to us, but she had the ability to eat.  Preemie preemies have a hard time learning to eat.  Plus she has other issues as well.  Cary has loads of GI issues.  All of which make it hard for her to be hungry or want food at times.  Until Cary I just assumed kids were giving their parent's problems and if they would enforce eating the kids would fall in line.  I am really surprised these parents didn't deck me.  But when a kid doesn't eat there could be a problem.  SO after eating major crow I set about learning a new way to get Cary to eat.

This is a corrective feeding device aka a hair dye bottle with tubing.  I call it a hamster bottle (they hate that at feeding clinic, but I call it that anyway).  The idea is that Cary learns to use her tongue and breaks the sucking pattern that you use with a bottle.  So we put food and drink in these.  We are trying to get Cary off of baby food and onto real food.  I have learned the way of the Jedi.  That's right, I have learned to puree.  You can really puree anything you put your mind to.  You start out with a mason jar filled with whatever you are going to fix.
I have bananas with apple juice.  All organic.  I place this onto my blender.  Yes, my blender.
Tah Dah!   I blend it up nice and smooth, Cary Can't do any chunks yet.  I puree it, strain it, put the puree into ice cube trays, freeze, pop out, and put into freezer bags.  Is it lots of work?  Yes, but I can boost calorie content and with Cary learning to eat new things it is expanding her horizons.  Plus, I can get organics and stuff that I grow from my garden.  Yum.

Another great thing about purees is that I can slip them into my unsuspecting husband's food (you are sworn to secrecy on this one!).  He is not a big veggie eater, but a little squash in the mac and cheese, a little green bean in this, he is none the wiser and I am able to slip something healthy into him.  Marvin has also benefited as he got really jealous when I was making Cary fruit smoothies.  He now sucks down healthy smoothies as well.  I am going to make pumpkin smoothies next week and I am really excited to see how they turn out.

So it is crazy, but I am loving it.  I still have laundry up to the ceiling some days, but I feel like I am finding my stride and not as incredibly overwhelmed as I once was.  I am learning to pace myself and take it one day at a time (most days:) ).  Life will always be crazy, but I wouldn't have it any other way.

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