Saturday, October 27, 2012

7 Quck Takes

The girls and I went to a ballet with my Aunt Lynn this afternoon.  Handel's Messiah and Beethoven's fugue were not the most exciting or understandable for the girls, but they seemed to enjoy the dancing.  We were happy to get out of the house after hibernating for nearly two months due to coughs and colds.
We had a dead mouse on our front walk this morning.  I am guessing he fell off of the roof.  Just the thought of a rodent that close to our house makes me ill.  I can handle insects, snakes, and reptiles, but rodents are an entirely different story.  If I find a rodent inside the house, I am afraid we will need to move.
I pulled a muscle or several in my ribcage from coughing.  The pain is incredible.  I finally wrapped a back brace around my chest today so I could get off the couch and make it to the ballet.  Thankfully the brace idea worked and minimized the pain a little.
Ken and I watched the movie Obama 2016 last night.  Disturbing...very disturbing...
Camille went to a huge birthday party today at an indoor bounce park.  Her preschool class this year is full of really nice kids.  I am hopeful that most of these kids will continue at our parish school next year.  What could be better than a class full of great kids with great parents?!
Those darn leaves are still in my backyard.  I guess they are not going to move by themselves.  Tomorrow will need to be raking day.
Hooray!  My oven is fixed!  The company actually repaired and returned the part within a week, which is pretty speedy, in my opinion.

Tuesday, October 23, 2012

The Simple Woman's Daybook


Outside my window...almost all of the leaves have fallen off the trees.  We host a very large squirrel family that has eaten most of the apples off of our tree AND the cute gourds we had on display in the front yard. 

I am thinking...that I have never been crabbier in my life.  Ha!  I would be perfectly content at the moment to not have to interact with another living being for a few weeks.  Talking makes me feel miserable and causes me to cough.  For some reason everything is irritating me these days.  Perhaps I need a vacation?

I am thankful...that Camille is doing great in preschool this year.  We had a hard time deciding to place her in kindergarten or preschool this year, but I think we made a great choice.  She has also become a great helper at home and has remembered to do her chores without being told.

In the kitchen...I have been cooking without an oven because we had to send a part in for repair.  We are managing okay, but now that I don't have an oven, I seem to want to bake everything.

I am wearing...this one always makes me chuckle.  Does anyone really care what I'm wearing?  I will say I wish my personal shopper college friend would visit our house and help Ken and I go through our closets and put together some outfits.  Ken has enough clothes to wear something different everyday for at least a year, and my closet is so bare that the kids can fit in there to play hide and seek!

I am creating...police, firefighter, and EMT vests for Camille's preschool.  My mom helped me a lot this weekend, but I still have quite a bit of work left.

I am going... to the ballet with the girls and my aunt this weekend.  How fun!

I am I can get some more writing business.

I am reading...Render Unto Caesar:  Serving the Nation by Living Our Catholic Beliefs in Political Life by Charles Chaput.  He wrote it in 2008, but it is certainly relevant during this election season.  I was worried it would be one big endorsement for a political party, but it definitely is not.

I am hoping...I got the trash on the curb in time for the garbage men today.  We have had it stacking up for several weeks now.  For some reason Tuesday is a difficult day for us to remember to take it out.

I am looking forward to...sleeping in my bed again soon.  I finally found a doctor who prescribed me several drugs to get rid of my bronchitis.  Unfortunately, I pulled a muscle in my rib cage from coughing and the pain is preventing me from coughing and from being able to sleep on my back... or sides...or stomach.  The only way I have gotten any rest is by sort of leaning sideways over our fluffy couch cushions.

I am learning...from the Catholicism course by Fr. Robert Barron that Ken and I are taking at our church.

Around the house...we have a mess.  I just cannot seem to keep up.  As long as I stay at home, I seem to be able to stay on top of things, but one full day out of the house, like yesterday, creates a disaster that lasts for days.  I actually have tried eliminating all shelves from our living environment to discourage stuff being set down, and I spend half my life calling junk mail companies to remove us from mailing lists.  The paper battle continues...

I am pondering...what will happen to our lawn if the leaves are never taken care of.  We have a lot of leaves to rake up, but we have been out of town two weekends in a row.

A favorite quote for today...All that is necessary for the triumph of evil is that good men do nothing, said by Edmund Burke, an Irish political philosopher.  I am genuinely fearful of the current and future state of our nation, regardless of who is elected as our next president.  I believe the only path to success these days is to make one's beliefs and values known before they are discarded as that belonging to a small minority.

One of my favorite things...Meghan is at last nearly potty trained.  Hooray!  She was doing great last summer but had a little relapse.  Now, I just need to make her some step stools so she can actually climb onto the potty herself without the risk of falling in!

A few plans for the rest of the week:  I just intend to rest.

A peek into my day... I'm supposed to post a picture here.  Maybe later?

Sunday, October 14, 2012

The Plight of the Dry Erase Marker

When Camille was about 3 years old, she received a few workbooks that were compatible with dry-erase markers.  At the time, I did not realize that dry-erase markers were not washable, oxy-cleanable, bleachable, etc.  (When visiting our house, you now have no need to ask why our already-colorful comforter has red highlights.)  Sooooo...I put the markers and the workbooks away for a later, more mature age.

Soon washable dry-erase markers came on the market, and the books were back in action.  I thought these workbooks would be perfect for car trips.  On a trip to Fargo this summer, I gave each of the girls a marker and a book.  Camille handled the situation quite well, but Meghan, who is still rear-facing in her car seat and not visible to me while driving, decided to color her face, clothes, car seat, etc.  This event was not a crisis because the markers really were washable.  I was just inconvenienced by having to bathe a child and wash a car seat and a full outfit of clothes.

I recently noticed washable dry-erase crayons on the store shelves.  Of course me being the sucker-mommy that I am, I picked up a box.  This past weekend we took another quick trip to Fargo so I brought both the crayons and the markers along, thinking that Camille could use the markers and Meghan would make less of a mess with the crayons.  The girls did not get a chance to give them a try until the ride home.  I think the pictures below say enough...

She's actually holding the crayon wrappers.  I guess she felt the crayon would be more effective without the paper on it.

Can you see the green tint in her hair?  Who knew dry-erase crayon would transfer so well?

As you can see, Meghan was quite proud of herself!

Unfortunately, I didn't get a picture of the chunks of crayon in her molars that I found while brushing her teeth tonight.  I guess they taste good too!

Friday, October 12, 2012

7 Quick Takes Friday

We have a playdate today, hooray!  The term "Minnesota nice" is a bit deceiving.  I recently read that making friends in Minnesota is more like using a slow cooker than a microwave.  This aspect has been an adjustment for me since making friends in Florida was pretty easy.  In St. Paul, everyone hangs out with the same people they hung out with in kindergarten, which leaves little room for us newbies to fit in.  Fortunately, I met a lovely not-from-here mom at Camille's soccer practices that has two kids the same age as Camille and Meghan.
We have had some kind of coughing plague in our house for nearly two months.  Everyone else is finally over it, except for me.  I'm hoping it goes away soon.
Ken and I worked really hard in September getting our yard and garage in order for winter.  I just have a few more wheelbarrows of rocks I'd like to move, pending recovery from the plague, before the snow flies.
I have two Halloween costumes to make, and I guess I better get them done.  Fortunately,
they are not as involved as last year's.
Ken and I are taking the Catholicism course at our church by Fr. Robert Barron.  So far we have been fortunate to have family available to babysit our two munchkins.  I miss living in Florida where all church events included plans for the kids!
Camille is taking Irish dance classes this year rather than tap and ballet.  The classes are very different, and I'm not sure what to think of them yet.  The kids don't learn dance steps at this age as much as they learn how to feel the rhythm of the music and stand with proper posture.  They also work on building endurance and encourage a lot of muscle stretching.  Camille enjoys the classes, and the dance school stresses modesty and natural beauty, which I really like.
I finally broke down and bought Meghan a really warm down comforter for her bed.  She was always cold at night, and I am hoping this will help her sleep better.

Thursday, October 11, 2012

Progress and Anti-progress

For some background about Meghan's growth disorder, you can read my prior blog post here.

I'm trying to be thorough in writing about Meghan's treatment because I noticed that I now have a lot of people following this blog that have children going through the same or similar treatment.

Hurry up and wait
After waiting for three weeks to hear from our insurance company regarding Meghan's medication, our endocrinologist called us to let us know that she usually hears from insurance companys sooner than three weeks.    Dr. Sunni felt that the lack of response was a good sign as insurance companies do not waste any time sending rejection letters.  After living in Florida, I have learned that if you want something done, you have to  be persistent, so I called our insurance company, Medica, to check on the status of our request.  Medica did not have a record of our doctor's request.  Apparently Dr. Sunni's fax never went through.  Sooooo...Dr. Sunni re-faxed everything and within 24 hours we were inundated with calls from specialty pharmacies, the insurance company, and the drug company.  Within 48 hours, Meghan was approved for growth hormone therapy by our insurance company. 

Insurance approval was not exactly the end of the road for Meghan's treatment.  Meghan is IGF-1 deficient.  IGF-1 deficiency can be treated in several ways.  She could receive growth hormone injections, which in theory would stimulate her body to make IGF-1.   Alternatively, she could receive IGF-1 injections, which would directly supply her body with IGF-1.  Growth hormone injections are preferred because they have fewer side effects, only need to be given once a day, and have a longer history of use.

IGF-1 Generation Test
Meghan had to undergo an IGF-1 generation test to determine whether growth hormone would adequately stimulate her IGF-1.  A nurse came to our house and taught Ken and I how to give Meghan injections.  Meghan had her IGF-1 level drawn on the day prior to her first injection.  On that day her IGF-1 level was 40, which is quite low.  Then, we injected 1 mg of growth hormone every day for seven days.  The normal dose for a child Meghan's size is 0.35 mg, so she received almost three times the regular dose in order to hyper-stimulate her IGF-1 production.  After the 7th day, Meghan had her IGF-1 level drawn again.  Dr. Sunni told us that her IGF-1 would need to increase by 150 in order to say that the growth hormone worked.  We just received the result from Meghan's second IGF-1 test, which was 113.  We were hoping to see a number greater than 190. 

Meghan's reaction
Meghan has always handled medical interventions quite well.  She holds very still while having her blood drawn and during doctor examinations.  We did not expect her to react any differently to the injections.  Because I worked as a phlebotomist for five years, I spent plenty of time observing children and their parents.  I noticed that children directly mimic their parents' emotions.  Ken and I have made a habit of addressing medical interventions as matter-of-fact events.  I tell Meghan when something might hurt, but I also quantify the pain as being a "big ouchie" or a "little ouchie".  Afterwards, I always let her give her opinion of the pain, too. 

We have a bit of a routine we follow for blood draws.  First, Meghan has to walk on her own into the exam room.  She can hold my hand as she walks, but she is not allowed to cling to my neck or be carried.  Second, I always have her lay down to have her blood drawn.  In my experience, this stabilizes her entire arm and limits any flailing or sudden movement of limbs.  I do not believe in restraining children with force because it instantly makes them combative.  Third, Meghan has a special toy that she brings to the doctor for blood draws.  I keep her "My Little Pony" in my purse, and we only bring it out when she is ready to have her blood drawn. The pony is about 2-3 inches tall and small enough that 1) it fits into one of Meghan's hands, 2) it fits into my purse, and 3) it cannot be used as a weapon ;-)  We usually talk about the blood draw rather than use distraction because Meghan seems to prefer it.  After the blood draw, the pony is given a kiss then put away, and Meghan is encouraged to thank the tech.

We have treated the injections in a similar way.  We gave them at the same time every day, right after breakfast.  She now has a special little "Carebear" that her grandmother gave her that she can hold that only is taken out for her injections. (Do not ask me why Meghan gravitates towards 80's cartoon characters.)  We talk about what we have to do with each step, and encourage her to help with what she can.  The only thing Meghan insists is that we promptly cover the needle (which is quite small, 5mm) when we are done.  I think that is her way of ensuring that we are really done.  She did get a few bruises from the injections.  Unfortunately, she is so skinny that we can only give them to her on her legs at this time.

A few steps back
At this time, we have stopped giving Meghan growth hormone injections because they probably are not going to help anyway. Our doctor is out of the country until next week, so we are waiting for her to return and help us with the next step in the process.  We will have to go through the insurance approval process again for the IGF-1 (Increlex) injections.  Increlex injections are given twice a day and carry the risk of low blood sugar.  Once she starts the injections, we will have to start checking Meghan's blood sugar a few times a day.

The prospect of giving Meghan Increlex does not excite us, given the added side effects and additional daily injection.  However, we keep reminding ourselves that the care she requires is minimal compared to children with diabetes, and we are so lucky that she was diagnosed at a relatively young age and still has plenty of time to catch up in her growth before her growth plates fuse.

Now that the fog is slowly lifting from our house, I hope to write some more fun, exciting blog posts in the near future!