Girl Scout

I have to admit when Ella said she wanted to join Girl Scouts, I was a little hesitant. I encourage extracurricular activities like swimming, soccer and volunteering at the local humane society, but Girl Scouts?  Really?  That means I have to help sell cookies and I didn't want any part of the cookie business.  A friend had her daughter join and the pressure mounted until I gave in.  So here is my little Daisy.

   

My little entrepreneur loved selling cookies!  She was so meticulous keeping records of the cookies she sold.  She wasn't playing store like she has for years in her playroom.  Making "real" change for "real" customers was a thrill.  And I can't tell you how many times she rearranged her display until it was just right.

So this is how far I've come!  I am our troop's Cookie Product Manager and I actually love the job.  Most importantly, Ella loves that she can help me be in charge of passing out cookies and setting up cookie booths. Who would have thought this would happen?  Cookie hater to Cookie Product Manager.  Crazy!

I have been impressed with the Girl Scout organization thus far. Aside from learning the ropes with a new troop, the organization as a whole seems to be very well managed.  There are so many opportunities for the girls now and as they get older.  I imagine we are going to be involved for years to come. 

One thing I wanted to mention about Girl Scouts is that they are not associated in any way with Boy Scouts.  Not that I have an opinion about the Boy Scout organization, but I do know families who are not "friends" of the Boy Scouts because of political and ideological associations.  The Girl Scouts do not have these same associations so I am happy to be away from the controversy. In fact, Girl Scouts appears to be very flexible with regard to many issues.  

On the other hand, they are inflexible with regard to the safety of the girls. For example, all adults attending ANY event must be background checked through the online system and fully registered with the organization.  Other than this, there is a lot of options with regard to how a troop is managed.  I like flexibility!  Makes my job as Cookie Manager much easier!

Girl Scouts

Ataxia

During Jillian's last IEP conference, her teacher asked if I'd noticed that her hand shakes. I had as a matter of fact, noticed her little hands shake when she is coloring, using a fork or placing food in her mouth, setting up her horses and building with blocks. So, basically, all the time! It's time to take her to her pediatrician to address this issue. When you have a child like Jill, you need to pick your battles, so to speak. I have noticed her tremor for maybe two years, but when visiting with her pediatrician, we always had bigger issues to address. Bigger fish to fry! Now that we have a break from surgeries and feeding therapy, maybe I can tackle this problem.

Ready. Set. Go.

Ataxia is the kind of lack of coordination and muscle control that I believe we are talking about with regard to hand tremors. There is a possibility that Jill's ataxia is associated with Klippel Feil Syndrome. There are reports of people with KFS who have developed ataxia due to spinal involvement mainly due to a compressed nerve. Jillian has had a full spinal MRI as well as multiple spinal xrays and no cord involvement was indentified so I would doubt this is the cause.

Another possiblity is that she has Arnold Chiari Malformation. There is a large percentage of people with KFS who also suffer from Arnold Chiari. One of the main signs is ataxia. Seeing that Jillian also didn't walk until the age of 2 does indicate she could have something wrong with her cerebellum, pointing to Arnold Chiari. She did have a normal MRI of her brain and this was ruled out. I do wonder if this could have been missed in a very mild form. (Arnold Chiari and KFS)

I have also considered that her neurological development is delayed and with time, her balance, coordination and hand tremor will improve. This is a real possibility. As I mentioned, she didn't walk until 2 and poor thing, once she learned to walk, she fell all the time! Her coordination and balance was definitely an issue. I carried her up and down stairs and got used to having a preschooler on my hip. But now, she is running, jumping and climbing stairs like a pro. Maybe her hand tremor will improve in this same way.

Lastly, many children diagnosed with one syndrome, have more than one diagnosis. It could be that Jillian has something we haven't discovered yet. Scary, but I must consider it.

I will be making an appointment for Jillian in the next week. As much as I'd like to sweep this issue under the rug, I worry about her not learning to write. She is beginning to recognize letters and I'd love to help her learn to control her movements enough to write those same letters.

Dreaming of my Garden

I love to garden. I don't have a green thumb, but that doesn't stop me. Between my clay soil, poor drainage and limited space, I'm surprised we have any vegetation whatsoever. Regardless, I still have the gardening bug. It's in the genes. 

Last year I convinced my husband that we needed raised beds to avoid the pitfalls of gardening in heavy clay. He built these. They are quite large and just what I had in mind.

Today was a beautiful day and I started imagining what my currently barren raised beds will look like in a few short months. Last year, I had trouble with the new soil and many of my vegetables didn't produce. The sugar snap peas were fabulous, but the rest of my crop was nothing less than pathetic. I found that the pH and Nitrogen levels in this new soil were not adequate. So I will start amending the soil with some organic fertilizer soon. I'm determined to be more successful this year.

E got involved to a degree last year, but I have plans to get both my girls working hard in the garden this year. Not just helping with the watering and maintenance, but with the planning and choosing which vegetables to plant. I have a feeling that growing our own vegetables could be a good way to get J to try a new food. E eats any and all vegetables and she does love to walk out our back door and eat sugar snap peas right off the vine. I'm hoping to get J to do the same. 

Other than our raised beds, I have a separate flower bed that will be full of strawberries and another section for zucchini. I also have two blueberry bushes that are already blooming.

Better get planning...

Progress

J has had physical, speech, occupational and feeding therapy off and on from the time she was 8 weeks old at Mighty Oaks Children's Therapy Center. The therapists are amazing! Heather was J's feeding and speech therapist and we did get very attached. We both looked forward to seeing her each week. Deciding to end our therapy at Mighty Oaks was a very difficult decision. A decision I made in order to take a completely new direction with regard to J's eating. It was time to try something new.

Now here we are...two months later. During the height of J's eating aversion phase, she ate the following...

peanut butter (scraping it off bread to eat it)
milk
strawberries
cheese pizza
macaroni and cheese
crackers (limited to goldfish, ritz)
cookies (that melt in your mouth)
whipped cream
ice cream

I was really in a panic and started following a brand new way of dealing with severe food aversions by following suggestions in the book Just Take A Bite, by Ernsperger and Stegen-Hanson. I've not just taken some suggestions and implemented the changes, but I have been following the book religiously.

The result?  This is what J ate for breakfast this morning...

scrambled eggs
strawberries
milk
string cheese
a whole apple (minus the peel)

And she is no longer scraping the peanut butter and cream cheese off bread. She is eating whole wheat bread!

So just to illustrate the difference further than just what she has eaten today, this is currently her list of acceptable foods.

eggs
cheese (many different kinds)
pasta in a number of forms (not just Kraft Mac N Cheese)
bread
string cheese
yogurt
hot dog in a bun
chicken nuggets (Kirkland brand)
cereal (sugary, but fortified with vitamins!)
pancakes
whole wheat quesadillas
black beans
any cracker or chip
granola bar
strawberries
applesauce and apples (no peel)
mandarin oranges
bananas
grapes
carrots
jello
any cookie (without coconut or nuts)
milk
juice
water

It just excites me to know I can give her some juice or water to drink rather than having her go through huge amounts of milk which contributes to her anemia. And I have fun making jello jigglers, so for selfish reasons, I love that she is eating jello. There is nothing that makes me happier than to see her eat a new food. And it's starting to happen on a more regular basis. Not a daily occurance, but we are making progress.

For most children, feeding therapy works wonders and is absolutely necessary. As an infant, Heather and an occupational therapist at Mighty Oaks were very successful in getting J to eat her very first food, vanilla pudding. J was 15 months old when she ate her first solid food. Therapy was essential at that time. Maybe because of her unique personality or the fact that she is four, we weren't having the same successes. So now I am her therapist which makes sense because I am also the person who feeds her three meals and two snacks per day. Consistency for her is so critical.

Face Picking

Dermatillomania is the compulsive need to pick at skin. The majority of people suffering with this chronic condition pick their skin to relieve stress or anxiety. When severe, this form of OCD can lead to open sores that never heal and scarring.

Dermatillomania

When children are affected with this condition, especially as toddlers, pediatricians encourage parents to "ignore" the behavior. Picking at skin can be a sort of pacifier to young children. Most children will outgrow this habit and are not at risk for a diagnosis of OCD and Dermatillomania as adults. On the other hand, if a child has sores or rashes from picking at skin, a physician may need to address these medical issues.

J picks at her face not to the point of leaving red marks or sores, but she has definitely developed the habit. As a parent, I worry and as much as I trust my pediatrician, I still need to do my own research. I found something really facinating in my google search.

Skin Pick

The article essentially states, children with speech delays are prone to picking due to the frustration of being unable to communicate their feelings and anxieties. Ding! Ding! Ding! That's us!  I know as J increases her vocabulary, she will outgrow this behavior. My pediatrician is right again...watch, but don't call attention to it. Obviously, if her picking was leading to sores or rashes, I would need to treat it differently. Another reasont to treat the condition seriously, if she didn't have an obvious speech delay and I thought there may be another underlying anxiety. Both of these situations would require professional help.

In adults, skin picking can have serious physical consequences. Sores can stay open and lead to infection and future scarring. Adults with any form of clinically relevant OCD will require mental health treatment to find the underlying stress or anxiety causing the compulsive behavior.

That's not us, but I don't want anything to happen to this face!