October...
Wow...we are now into week 13 of this HSP thing...never would have imagined that it could go on for so long!! So...we are once again weening off of the prednisone...we are currently at 5 mg/day...with tummy pains starting about 9 pm and lasting through the night...we know this because if we don't alternate IBP & Tylenol...she wakes up crying...so...we are still hoping to stay away from the Dapsone. She continues to have crops of spots come and go, and they also seem to clear up quickly.
Kaylee is such a trooper!! She has been extremely brave and patient. Of course she does loose it at times, but for the most part she has been doing great. Her icky blisters on her feet have finally "softened" due to Mike taking the time to "pop" them all. It was pretty disgusting, but we are glad to have her walking. It was killing my back to carry her around, to and from places. We finally had my dad bring home the wheel chair. Despite decreasing her medicine, the bloody blisters have not come back, and will hopefully stay away.
She is also doing mostly well in taking the different vitamins and etc. She can get quit sassy and opinionated, but that is just Kaylee. This past weekend, her cousins were all over and they all ran and played for a few hours outside. It was nice to see her running and happy. Homeschooling is going well. We are pretty low key around here. It is amazing how practically everything can count towards "school". Moving through curriculum is much faster on a 1 to 1 level.
Kiera is loving school. Her teacher said she is "coming out of her shell". She reads well and seems to be making new friends. It is odd having her gone all day.
Kassi LOVES preschool. She is quickly learning her letter sounds and loves doing her "homework".
Mikenna always asks, "Kassi, where are you?" She is stringing all sorts of 2 & 3 word phrases together...and her vocabulary just grows and grows!! She runs to Kaylee whenever she is in trouble and has the silliest smiles sometimes.
Life is busy and we are happy...
Kaylee is such a trooper!! She has been extremely brave and patient. Of course she does loose it at times, but for the most part she has been doing great. Her icky blisters on her feet have finally "softened" due to Mike taking the time to "pop" them all. It was pretty disgusting, but we are glad to have her walking. It was killing my back to carry her around, to and from places. We finally had my dad bring home the wheel chair. Despite decreasing her medicine, the bloody blisters have not come back, and will hopefully stay away.
She is also doing mostly well in taking the different vitamins and etc. She can get quit sassy and opinionated, but that is just Kaylee. This past weekend, her cousins were all over and they all ran and played for a few hours outside. It was nice to see her running and happy. Homeschooling is going well. We are pretty low key around here. It is amazing how practically everything can count towards "school". Moving through curriculum is much faster on a 1 to 1 level.
Kiera is loving school. Her teacher said she is "coming out of her shell". She reads well and seems to be making new friends. It is odd having her gone all day.
Kassi LOVES preschool. She is quickly learning her letter sounds and loves doing her "homework".
Mikenna always asks, "Kassi, where are you?" She is stringing all sorts of 2 & 3 word phrases together...and her vocabulary just grows and grows!! She runs to Kaylee whenever she is in trouble and has the silliest smiles sometimes.
Life is busy and we are happy...
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