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Showing posts from March, 2016

Rare Diseases and the Medications that Treat Them

It's been an exciting few weeks around our household for Segunda. Our pediatrician found us an endocrinologist who is one of the foremost experts on HPP in the western United States, and he is local to us. This means that he can prescribe Strensiq for her. Strensiq is a drug developed for patients with hypophospatasia (HPP) and was approved by the FDA 4th quarter of last year. Segunda's new endocrinologist is also on the board for Strensiq. Our luck couldn't get any better.  In mid-March we had our first appointment with the new doctor. It was a torture session for Segunda. She had to walk around the doctor's office for 5 minutes to get a baseline for how fast she can walk and what her stamina looks like. At the 2 1/2 minute mark, she tripped over a rug. She didn't fall, but it was very upsetting to her and she screamed and cried the remaining 2 1/2 minutes and begged me to pick her up. So I walked backwards through the halls of the doctor's office holding h

A Refrigerator in the Toddler's Room

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We have had an exciting week around our household. We learned that Segunda will be on a wonderful medication just approved by the FDA late last year to treat hypophosphatasia. She will get her first injection the last week of the month. But, this means that we are getting a refrigerator just for her medication and we will put it in her room. Her room was nowhere near ready to receive a refrigerator. So, we got it ready today. Here is her room before and it's not pretty: Her room felt very temporary and not at all welcoming. Take a look at our hurried transformation: As we were moving furniture in and arranging her clothes in the dresser, Segunda kept hugging my legs and saying over and over, "Thank you, Mama." I'm sorry it took us this long to get her room in order. Her medication refrigerator will go on her dresser.  Then Prima was desperate to begin her re-organization. We got through her clothes and that was it for

The Purge for the Toddler Begins

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Today as the kids watched movies trying to get over their illnesses, I went through Segunda's clothes. I purged everything that is smaller than a 3T. 111 sweatsuits, dresses, outfits, pajamas, shirts, pants, swimsuits, leggings. Then I went through her closet and took out all the things she doesn't like or doesn't wear and 3 40 gallon bins of 3T clothes. Some of the clothes from the bins made it into the closet, but 75% are being donated.  Only 85 things this go around, but it included a snowsuit, snow pants, and a winter coat.  I found some real treasures in the bins. Segunda will be over the moon for the multiple sets of Hello Kitty pajamas I unearthed.  On her closet shelf were several hats and gloves, so I decided to round out the day by going through the tubs in the coat closet full of hats, gloves and scarves and ditched a few there too. Hopefully these will keep a few toddlers warm in the winter. And the Planes lunchbox shoul

Clothes Part 2 - Before and After

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Today I tackled the rest of the clothes category for my clothes. These categories are: - socks - underwear - accessories (scarves, jewelry, belts, etc.) - other (pajamas, swimsuits, etc.) - shoes The death count today is: 9 pairs of socks 2 pairs of slippers 1 slip/cami set 1 boustier 3 strapless bras 8 purses 1 hanging cubby organizer 2 storage utility bags 1 bottle bag 1 changing pad 1 portfolio case 2 jewelry bags 2 jewelry boxes 42 pairs of earrings 4 necklaces 7 lapel pins 6 belts 6 scarves 15 pairs of shoes Here are the before and after pictures to show you the difference. Bear in mind that the bins you see are full of my kids clothes as they grow into them. I will be going through those as well very soon. Yes, I'm putting my underwear drawer on the internet for all to see. But look at how amazing this is.  My shirt drawer before and after My pajama/sweats/swimsuit drawer before and after. My clothes hung so that