Endocrinology and shoes

By Stephanie

We are still wondering if Avery’s pituitary gland is working.  Right now she appears fine, but you can’t survive if your pituitary isn’t working without medication.   They will take her off all the meds in2 to 3 months and test her to see.  You can’t really test the pituitary, you have to test the glands it runs.  It’s kind of hard to know for sure.  Some things, like growth, we can’t tell for months or years.  For other things, like blood sugar, you can check right away.  Right now her thyroid is borderline low.  So they are putting her on a low dose of a thyroid med.  And she is cortisone dependant.  It is what the adrenal glands make.  She could die if she doesn’t get enough.  Kind of scary.  They are decreasing her dose to a more maintenance dose rather than the bigger one they had her on right after surgery.  It affects anything that your body reacts to, like stress, illness, injury, her body can’t respond.  So we have to give her a 3X dose of her hydrocortisone if any of those things occur.  It is a lot to remember, but I am getting better.  I can even spell most medical terms almost correct the first time. 

 

I am OBSESSED with these shoes.  They are a high heel (for anyone who knows me well I prefer at least 3 1/2” heels).  They are a black oxford type shoe with a ribbon tie.  I found a few that totally fit the bill…only they are $200 at Zappos. Not in the budget.  Sears actually had some at the end of their season, but by the time I saw them they only had 5 1/2’s left.  I am NOT a  5 1/2.  So I have been hunting them ever since.  If you see some, under $60, let me know. 

Book Review

by Stephanie
First of all, a reader, Anne has a question about the laundry soap.  I have been TRYING to email you back…no luck.  Old computer.  Very sorry.
Anyway, mine thickened right up.  So I would just review the steps again.  Make sure your bar of Fels-Naptha is melted down completely and the water is hot.   If you did this, I will ask my mom, she has made it more than I have and might have a suggestion.   Put your email address in your comment, and I will get back with you.
I read LOTS while in the hospital with Avery.  One I read that I liked (kind of a fluffy piece) is the The Actor and the Housewife by Shannon Hale.  It is a bit cheesy.   And at one point I wasn’t sure I would like how things end up (I am sucker for a happy ending).  But it all turns out fine.  And it is a fairly quick read too. 

504 Plan

by Stephanie

So we have Avery’s 504 plan ready.  What is a 504 plan you ask?  It is something that the school puts in place in order to assist a child.  Not if they are mentally disabled.  Only for physical needs.   Like if you have a kid that is diabetic and they need their blood checked every 30 minutes, they would assign an aid to be with them to be monitoring that. 

In our case Avery is functioning very well in the classroom.  It is when there are a lot of kids in the hall way that she needs help.  She also isn’t allowed to participate in recess or PE right now.  Just so she doesn’t get hit in the head with a ball or get bumped and fall down.  Her dr. said both feet on the ground at all times.  And she is SUPER competitive.  So just sitting out feels like she is being punished. 

The school is having someone who will walk her to class.  And take her to the counselors office during lunch.  On rainy days the kids are all inside playing games anyway, it’s just on these sunny days she will have to be inside when they are all outside.  Fortunately for her (and unfortunately for me) these sunny days are all but over. 

Oh and bathroom breaks.  She needs an adult there, just in case she falls over.  She still is a bit unstable, especially when she bends down. 

The school has been amazing to work with.  Her principal and counselors know her well from last year and I feel like they are doing the best to make her feel safe and take care of her needs.  And this isn’t forever.  I am hopeful that by Thanksgiving she will be for the most part back to her normal routine. 

We also think that she has had limited site for a LONG time.  That this has been going slowly and she didn’t even notice.  So really she has been functioning with almost no peripheral vision for a while.  So for her, her site is back the way it was before for the most part.  Kids can adapt like that.  Luckily.  But we will have to see over the next six months what she gets back. 

And she slept till 12:45pm on Saturday.  Even with part days at school she was wiped out.  She won’t be going full days for at least another few weeks.

Hot Shots

By Stephanie

FINALLY, another recipe!!  I have been wanting to post this recipe since before our extended stay at the hospital. 

My friend Jami made these for the 4th of July.  And I was craving them.  So I bought all the stuff to make them, and then we ended up in the ER.  My darling friend Jami made them so Friday night when we got home from the hospital, I could have some…yum.  But I didn’t think to take a pic.  So I was craving them again…and this time I did take pics. 

If you are like me and only have a gas grill, this drips LOTS of grease and can start a grease fire.  So either do them in the oven or put something underneath to catch the grease.  My brother-in-law found this out the hard way.  Sorry Ty!  Now we know. 

Hot Shots

makes 24

12 jalapenos

1 package little smokies

3 oz cream cheese, room temperature

12 slices thick cut bacon (or really any kind you have)

Cut jalapenos in half lengthwise.  Take out seeds and ribs.   Put about 1-1 1/2 tsp cream cheese into it and then add a little smokie.  Cut bacon pieces in half and wrap one half piece around jalapeño.  Put onto wire rack on top of sheet cake pan or put on grill.  Bake at 350 degrees for 30-35 minutes until bacon is crisp and pepper is soft.  I actually broiled on low for 5 minutes at the end to crisp up the bacon. 

Beary good

by Stephanie

My darling aunt that lives in Ontario, Canada sent her this HUGE bear.  And look…finally a pic with a smile.  That is nice to see.

Special Request

by Stephanie

If you were thinking of sending Avery something, and just didn’t know what to send her, she really could use one or two of those track suits.  (she is a 10/12 or a 10).  We have lots of appointments we are going to be going back and forth and I think she would feel comfy in a track suit.  Plus those days she needs to just sleep, they feel as good as pjs. 

But REALLY, don’t run out and buy her one if you weren’t already planning on sending something (yes, Kathy Roller, I am talking to you).  But IF you wanting to send something already.  This might be a good idea. 

Or if it is easier and cheaper, send a gift certificate.  We have about everything within 10-15 minutes from our house. 

And thank you to everyone for all the cards, dinners, laundry, house cleaning, snacks, magazines, stuffed animals and prayers.  We are so very blessed!!

Sleep and Meds

by Stephanie

So we made it through our first night home.  She is still having trouble sleeping.  And getting up and down the stairs is very slow and she HAS to have someone with her.  But she had a shower, washed her hair and is doing pretty good.

We still don’t know if her pituitary glad is working.  They have her on a VERY strong steroid that is taking over for it right now.  Over the next 10 days we will wean her off that one and then get her on Hydrocortisone.  Then they can test her adrenals to see if they are working or not.  I am hopeful that they are.   Otherwise she will be on meds for the rest of her life.  Which is fine.  However, I am really hoping that her pituitary is going to come back and be fine.  But in the meantime, if she gets sick, breaks a bone, gets in an accident, or any other high stress situation…she needs extra Cortisone or if she can’t take a pill…a shot.  I had to learn how to give a shot.  Hopefully that NEVER happens.  But now I know how to. 

I also had to order her a medical id bracelet.  I just got the one from Medic-alert.  That way they have a number to call to get additional info on her conditions and meds.  It wasn’t any more than the ones without the phone number.  And once we get it she wants to take the band off it and make a beaded one.  So it looks more like jewelry.  Ok.  You just had brain surgery, so I will accommodate your need for bling.