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!

Friday, September 7, 2012

Meghan’s Diagnosis

We finally have a diagnosis (and a treatment) for Meghan!

A little background

Meghan started showing poor growth in weight and height when she was six months old. As a result, she has been put through a large battery of tests to rule out a wide array of disorders. Here is a list: cardiac echo and EKG, kidney ultrasound, numerous analyses of her diet and caloric intake, scope and biopsy of her complete digestive tract, sweat chloride testing for cystic fibrosis, x-rays of her bones, blood tests for thyroid function and numerous other endocrine disorders, growth hormone stimulation test, and I'm sure a few I'm forgetting. The most important thing we did was keep very careful track of her height and weight growth charts, particularly as we moved from Florida to Minnesota. Throughout all of these tests, each result was the same: normal. Meghan's dramatic growth charts kept us and her doctors searching for something that was wrong as they had never seen such poor height & weight in such a healthy, smart kid.

The only test that ever came back abnormally low was Insulin-like Growth Factor-1 (IGF-1). A low IGF-1 level can be caused by several things: malnutrition, growth hormone dysfunction, etc. We proved to her doctors several times that Meghan was not malnourished. She is a ravenous eater. She did have a growth hormone stimulation test, which showed that her growth hormone was produced in adequate amounts.

I placed Meghan's growth charts below. Most children will start growing along one of the curves and follow that same curve. You can see that Meghan does not follow any curve and most recently develops in a mostly-straight line. These charts were the best indication that something was very wrong.

This Length-for-Age chart shows how important it is that the nurses measure the little ones correctly. You can see that Meghan supposedly lost an inch from 4 to 6 months. This one error caused several doctors to discount the validity of her entire past growth chart and greatly prolonged our process of showing she was not growing. Everyone wanted to follow Meghan themselves for 12 months because they couldn't believe the previous results.


After the growth hormone test, our endocrinologist consulted with several other growth experts, and they all decided that Meghan most closely fits the diagnosis of Primary IGF-1 deficiency. IGF-1 is stimulated by growth hormone. In Meghan's case, she makes adequate growth hormone, and the growth hormone receptor is functional, but for some reason does not make enough IGF-1. In most children with IGF-1 deficiency, a protein called IGF3 binding protein is also low. Meghan only recently began to have low levels of this protein, which made her diagnosis a little bit more difficult and prolonged.

I joined a Facebook group nearly a year ago consisting of families of children with IGF-1 deficiency on a hunch that Meghan fit the diagnosis. While children with growth hormone deficiency are generally short and chubby, the children with IGF-1 deficiency tend to be skinny, just like Meghan. Luckily for us, the leader of this IGF1 deficiency group lives in Brooklyn Park, MN, which is less than an hour from our house. She has already proven supportive in waiting for test results as her daughter has the same doctor as Meghan.


We are very lucky that even though IGF-1 deficiency was discovered relatively recently, a treatment is available. Some children respond well to injections of growth hormone. Increasing Meghan's growth hormone may increase her production of IGF-1. Children that do not respond to the growth hormone receive synthetic (laboratory-made) IGF-1 injections called Increlex. We do not know to which injections Meghan will best respond. In a few weeks, Meghan will have her blood drawn for IGF-1, receive 4 days of growth hormone injections, and then have her IGF-1 levels checked again. The response to this test will determine which injection Meg receives. The growth hormone injections would be once a day, have very few side effects, and she would receive them at least until she passed through puberty. The Increlex (IGF1) injections would be twice a day, have the possible side effect of low blood sugar, and she would receive them at least until she passed through puberty. The needle for the injections would be the same as that used by a diabetic to inject insulin, so thankfully they are fairly small and go into the fat rather than the muscle.

Treatment barriers

We are gradually learning how to navigate through insurance company barriers. Fortunately, we have been assured that the burden of proof Meghan needs this treatment and the insurance company should pay for the treatment lies with our physicians. Meghan certainly fits the poor height criteria for receiving the injections, however her IGF-1 is only 2.3 standard deviations below the mean and insurance requires this number to be 3 standard deviations below the mean. Our physician has submitted the forms to our insurance company and we are now just waiting for their approval or rejection. If our insurance company rejects the proposal, apparently our physician files an appeal.


These injections are very expensive, costing roughly $10,000 per month. Luckily, if our insurance covers the injections our cost will be $100-200 a month, which is much more feasible for us. I really am not certain what will happen if the insurance company rejects Meghan's treatment.


Growth therapies are constantly on the chopping block for all politicians. (I can't claim party affiliation on this one.) To a lay person, the only role of these drugs is to make people taller. As our country's medical system is scrutinized and reformed (which is without a doubt needed) by both political parties, this costly medical treatment will be even further scrutinized. We do not qualify for government medical assistance, but generally any restriction the government places on healthcare is endorsed by the private insurers, and we would still be affected.

What if Meghan does not receive the treatment?

At Meghan's current rate of growth, she would reach a height of about 4 foot 6 inches at the most. We do not have an estimate on her projected weight, but based upon her current stagnant weight of 19 pounds, she faces extreme risks if she were to become ill and unable to eat for more than a couple of days. At this time, her brain development appears to be keeping up and exceeding her peers. We are hopeful that the treatment would give Meghan more energy. At the age of 28 months, she still takes two long naps a day and is regularly lethargic. Our biggest fear is that Meghan will catch a virus that will render her unable to eat as she has absolutely no reserve food supply.


At this time, we do not know if this is an inherited condition. Camille, Meghan's big sister, has always been small, but she has always followed the 25% for growth. Recently her height dropped to the 10%, so Camille is also being watched closely for growth delay, but we hope this is just a phase. Some children are not diagnosed until they are 5-7 years old or older. Fortunately, Camille has never shown the lethargy that Meghan has. I have a history on my mother's side of family members with very short stature. My grandfather was a very tiny man and weighed about 130 lbs at his heaviest. Ken's family also has several small family members.

We are so grateful for all of the prayers we have received through all of this. Please keep them coming!

Monday, July 16, 2012

Happy 5th Birthday, Camille!

Turning 5 is a very big deal.  Camille has been the most patient young lady.  She went to preschool this year and witnessed every single one of her classmates turn 5 before her.  As she left the house very early this AM for her day at Grandma and Grandpa’s house, she had the most enormous smile on her face.  This little girl had won the biggest lottery of all.  At last she was five!  Camille had a very busy year.

She wore make-up.
She gained the poise of a ballerina.
She held hands with famous people…err characters.

She rode turtles…and visited the zoo several times.
She had a Smurfin’ Halloween.
She made new friends.

She did a LOT of arts and crafts.
She hung out with princesses.
She showed off her wacky side.
…and her other wacky side.
She was a fantastic big sister to her “best buddy”.
She embraced living closer to her cousins.
She lovingly welcomed her newest cousin.
She completed an entire year of preschool in spite of being almost completely deaf for 3 months.
She danced like no one was watching.
She loved with all her heart.
She embarked on adventure after adventure.
We love you so much, Camille.  You are the princess of our tower.
You are beautiful inside and out!
Happy 5th Birthday!

Sunday, June 10, 2012

Four cuties out on the town

Camille and Meghan were lucky to have two of their cousins visiting from Fargo this weekend. We decided to take them on a little adventure.

We rode the city bus to the Children's Museum downtown.

 We visited Snoopy.
 At the museum, we made a rain storm.
 We explored the land of Curious George.
 We presented a pupped show.  (These girls love puppet shows.)

We pet a turtle.

We played with bubbles.

We created and danced to our own light show.

We went grocery shopping.

We ate snacks and made silly faces.

(From silly oaks, goofy acorns do fall.)

We held hands.

On the way to the bus stop, we visited a couple of St. Paul landmarks.

Mickey's Diner

 The Landmark Center
The bus stop!

After filling up with food and taking a good nap, we ventured off to watch Camille's dance recital. Camille is on the far right.

 Be assured, Camille and the other cuties in her class garnered the biggest cheers of the evening!

Afterwards, we stopped at Culver's for ice cream. (Sorry, no pictures of the ice cream because I had one very tired two-year-old sleeping in my lap.)

A private note to my sister, Catie, and brother-in-law, Marcus:  if your kids seem a little tired this week, it's because they had one heck of a good time in St. Paul!