How do you get that little bow to stick to Hope's head?
OK, so when I was pregnant several people suggested that I use a little gob of Vaseline on her head and stick the bow in it. It only stays for pictures and I SWORE I would never do it but alas I have.
Is it possible that Hope has been misdiagnosed?
No, I don't really think so. Electron Microscopy is how EB is diagnosed and it is a very precise science. We are confident that the doctors handled her biopsy correctly and thus the diagnosis stands.
If Hope has no symptoms of EB, how did you know to test her for it?
She has no symptoms now. She did after birth. The hospital bands rubbed her little heals causing big blisters. We did have to wrap her little feet for the first three weeks of her life. Because we did not know how to properly care for her blisters it took a little while longer for her to heal. Once we learned techniques of wound care it was much better.
The day after we were discharged from the hospital we took her to Pittsburgh for a biopsy and electron microscopy. We also assume Isaac had EB. He also had blistering. His biopsy however was NOT done properly and therefore his negative results were inaccurate.
In order to do a proper biopsy, a blister has to be created by using a pencil eraser to cause friction and then before the blister forms that skin is taken for biopsy so changes in the skin can be seen under the microscope.
Where do you get all of Hope's cute clothes?
Honestly, times are tough here...most of what she has are either gifts that others have so kindly showered her with or are hand me downs from friends.
You mentioned before that you were cloth diapering Hope. How is that going?
Honestly, I LOVE it! It is another of those things I SWORE I would never do, but am so glad I changed my mind. It is fun. I am a geek. I honestly so look forward to changing her diaper. They are just so cute. We have lots of different kinds. A good friend got us a few Bum Genius One Size and I like them, but they are a little bulky on her yet. Right now I am loving just old fashioned prefolds and Thirsties Fitteds with covers. We also have a few Fuzzi Bunz we use for outings and such.
I LOVE washing them and hanging them to dry. There is nothing cuter than a line full of little diapers! :)
You had talked before about struggling with homeschooling or sending Luke to Kindergarten this year. Have you made a decision?
Yes. Well I think so. :) He will be going to school on August 26th. I will be honest...I am freaking out about it but after much deliberation and prayer, Howard and I think this is best for him and our family right now. We live in a community with a very small familial Elementary school. Howard and I both went to this school and know most of the teachers and feel very comfortable sending Luke there.
I also really feel that Ben needs more of me and this way I can focus on him a little more, if Hope allows. We have decided that we will continually monitor the school situation and if we feel there is a better decision at any time we will change our minds.
So there are a few answers to your recent questions...if you have any more feel free to ask away!
10 comments:
Good thing you used Vaseline. Some will probably tell you to use Karo (or is it Caro?) syrup. DON'T! It attracts bees! Anyway, another greaseless alternative is KY jelly. Seriously, it's not greasy and dries and does not attract bees. We'd all be in trouble if it did. =)
I think you made good choice about school. It would be good for your son and family. Then when it comes time for Hope to go to school, everyone with be familiar with her and EB and you won't have to worry too much about her!
I don't want to get yours hopes up too much, but there is a form of DEB called: Transient bullous dermolysis of the newborn. You may have come across it already, but it can be mild and "go away" after the first year of life. There is a little info on it on this site: http://telemedicine.org/stamford.htm just click on 'blistering diseases' on the left side of the screen. I am not sure how current the info is, but it has a lot of details about each form of EB.
Don't let anyone make you feel guilty about sending your kids to public school. When my daughter was in kindergarden she told me how the kids were acting when the teacher left the room for something. She said they were throwing paper, spitting water on each other and into the hallway, etc. Then she said, "but I just sat quietly in my seat because I know that God's watching me even when the teacher isn't." That reaffirmed to me that we are still the biggest influence in our kids' lives. Praying for your peace always.
-Natalie
You can also use a little dab of Elmers glue to hold the bow on and it washes right out with a little bit of water..thats what I used to do before my girls got enough hair.
Giggles
You know I am very wary of cloth diapering--I think it is kind of dirty. I mean what do you do with a big old wad of poop (TMI probably, but I figure not so much for you since you're a Mama and all)? Yuck! And, what about the other times when poop isn't as nice and neat as a big old wad?
Anyways, I think it is a great idea to send Luke to school, like you siad, I think that will be so important to Ben and then Ms. Hope will follow in his footsteps when he goes to school.
Good for you!
Hey Kristy,
thinking of you and all your sweet kiddos. Hope is so precious - I love your new page set up. I am a blog slacker!! Your family pic at the top is so sweet! Thanks for the updates. I haven't got to read much so all the questions you answered got me up to date.
Love you friend. I will continue to pray for everything.
Kim
Ok, I would love to see a picture of the inside of your fridge to see how you organize the produce so well in the containers you spoke about. I am always looking for good organzing tips!
Good for you for picking what schooling situation works best for your family and your kids at this time. We also chose a small rural school for our kids. Its been great so far (we will be entering our 4th year in public school) and the kids have had fantastic caring teachers. I went back and forth with homeschooling before our first went to kindergarten but haven't regretted our decision for a minute. We will switch to homeschooling this winter because we will be living in Mexico. I'm a little nervous about that after being spoiled. :) There are so many strong well intentioned opinions out there but don't be guilted. :) If its not working out for the best you can always change your plan later.
p.s. I'm glad Hope is doing well right now and I love the new blog design.
If it were any other elementary school I would probably home school too....but I know our kids are in good hands. ;) I don't know about you, but Reagan is just bursting with excitement about going to school!!!
We use cloth diapers with our 16 month old twins. I just did a recent blog post on, so you can go over and check it out if you would like. We love it and it has saved us TONS of money!
Oh - I have a friend that makes and sells bows - it is brilliantbows.com They are great affordable bows that are guaranteed to stay in newborn hair. I do not have a girl, so I haven't tried them out, but I have lots of friends that have!
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