We then noticed that her eye was really swollen where she has the xanthogranuloma. :-( It's so frustrating not to be able to figure out why her eye flares up or what causes it to get red and infected looking. I can imagine that it's irritating to her at least some what. Well on Sunday, she had grabbed daddy's cell phone and clocked herself in the eye with it. Not hard or anything, but pretty soon after that, we started noticing that her entire eye and whole side of her face had gotten really red. It was pretty scary for me as her mother and Juan was actually worried to. Her's a picture of her eye swollen, but not from Sunday...it was way worse on Sunday.
This was it swollen on another day....and it's not super bad right here. You can see that little red dot on her eye...that gets a lot bigger and starts to bleed out from it. She just seems a little extra fussy when it does flare up and we just went to her doctors appt and her doctor just didn't seem super concerned, or he just doesn't know what to do about it. He said that it usually goes away after a few years....but I'm not just okay with having my daughter suffer flare ups once a week over the next few years. That's like over 100 flare ups and bleeding from her eye! I don't think so....not gonna happen. I'm not just gonna sit around and wait it out.
Juvenile xanthogranuloma (JXG)
primarily is a self-limited dermatologic disorder that is associated
rarely with systemic manifestations. Infants and small children are
mainly affected.
JXG consists of lesions that may be single or multiple and appear as firm, slightly raised papulonodules several millimeters in diameter. They are tan-orange in color and occur frequently on the head and neck, but many extracutaneous sites have been reported.
The eye, particularly the uveal tract, is the most frequent site of extracutaneous involvement. Approximately one half of patients with ocular involvement have skin lesions. JXG is the most frequent cause of spontaneous hyphema in children and can result in secondary glaucoma and eventual blindness.
Needless to say, that definition makes me nervous and I want more answers then what I'm getting from my doctor. So as soon as we get Hadlie on medicaid....I'm going to find a pediatrician and not just a family doctor. Hopefully we can get her qualified sooner then later. Anyways...back to my original point of this post....Juan thought it would be a good idea to have our home teachers come over after church and give her a blessing. I love my husband and love him even more for thinking of that. So after church, our home teacher Tommy came over and he along with Juan gave her a blessing. Little Miss Hadlie decided to wait until the perfect moment and as soon as Tommy started the blessing to seal the annointing....she filled her diaper and filled it LOUDLY!!! LOL....I tried so hard not to laugh, but it was such perfect timing. She let it rip and kept letting it rip for a few seconds....sweet little girl! After she was done filling her britches, her father gave her a blessing of healing and blessed that her eye would stop bleeding and that a solution would be found to her condition. It was a short and sweet blessing and you could hear the love he has for his daughter in his voice. I'm grateful to have a worthy priesthood holder that we as a family can turn to and rely on. I'm anxious now to find another doctor and get some of my questions answered. I will for sure keep you posted.
On a happier note....here are a few pictures of our little sweetheart in a better mood!
JXG consists of lesions that may be single or multiple and appear as firm, slightly raised papulonodules several millimeters in diameter. They are tan-orange in color and occur frequently on the head and neck, but many extracutaneous sites have been reported.
The eye, particularly the uveal tract, is the most frequent site of extracutaneous involvement. Approximately one half of patients with ocular involvement have skin lesions. JXG is the most frequent cause of spontaneous hyphema in children and can result in secondary glaucoma and eventual blindness.
Needless to say, that definition makes me nervous and I want more answers then what I'm getting from my doctor. So as soon as we get Hadlie on medicaid....I'm going to find a pediatrician and not just a family doctor. Hopefully we can get her qualified sooner then later. Anyways...back to my original point of this post....Juan thought it would be a good idea to have our home teachers come over after church and give her a blessing. I love my husband and love him even more for thinking of that. So after church, our home teacher Tommy came over and he along with Juan gave her a blessing. Little Miss Hadlie decided to wait until the perfect moment and as soon as Tommy started the blessing to seal the annointing....she filled her diaper and filled it LOUDLY!!! LOL....I tried so hard not to laugh, but it was such perfect timing. She let it rip and kept letting it rip for a few seconds....sweet little girl! After she was done filling her britches, her father gave her a blessing of healing and blessed that her eye would stop bleeding and that a solution would be found to her condition. It was a short and sweet blessing and you could hear the love he has for his daughter in his voice. I'm grateful to have a worthy priesthood holder that we as a family can turn to and rely on. I'm anxious now to find another doctor and get some of my questions answered. I will for sure keep you posted.
On a happier note....here are a few pictures of our little sweetheart in a better mood!
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| Princess Hadlie with her daddy! |
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| Hadlie got this adorable outfit from my friend Karissa. It's 0-3 months size and she barely fits in it now at over 4 months old! |
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| LOVE! LOVE! LOVE! HER LITTLE SMILE! |
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