Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

CHOP Update

We had a very long day today. The surgery is all set for May 2nd. We met first with our eye surgeon who is a terrific doctor. Of course they brought in two people before the doc came in so Abby was already out of sorts. She cooperated enough to get what they needed. I was a little disappointed that he thought Abby may have to wear the glasses after the surgery. I was hoping to put all this eye crap behind us. We are hoping she gains a little weight over the next 2 weeks so they can give her anti-nausea meds before surgery and better pain meds after.

Anesthesia checked her out and she is all set there. They will give her versed when we get there to keep her nice and calm before hand. Although I think the one that will need it is me. :>) Then they will put her to sleep with a mask. At that point they will put in the IV and tube her. The surgery shouldn't take too long and I will be able to see her once they pull the tube.

The last appointment today was with the allergist and she has a confirmed milk allergy. We now must travel with an epipen. I was shocked at some of the foods we have to avoid: lunch meats, hotdogs, sausage, caramel, brown sugar and on and on. We have to be careful about milk products in lotions, soaps, etc. even in the products we use. They will retest her every 6 months in the hopes that she outgrows the allergy. In the meantime we will have to keep moving with soy products.

Guess life just wasn't interesting enough around here.

2 comments:

Rachel 2:33 AM  

Long time lurker. I've been meaning to write all week, since it seems like it's been a long one for y'all. I just wanted to say how incredibly impressed I am with your persistence as a mom to get the very best health care for your girls. I know how incredibly frustrating it can be now (no, I don't have kids yet, but I have a good friend who had twins who needed repeat surgeries and PT along the way), and I think you should be really proud of what you've done and I'm sure the girls will be able to say thanks for all the help in just a few short months. And my experience with my friend's kids (I posted about it this week) is that everybody has long since forgotten the trivial things like thick glasses and crossed eyes that get so much attention at first, and they are healthy, beautiful, well-adjusted kids. I hope that in a year you'll be able to look back and barely remember the time when you had 3 and 4 doctors appointments a week.

Anonymous 4:03 PM  

Hi, I have been reading your blog for some time now. I picked up on this from K & R S. I am so impressed with everything that you have been handed and how well you deal with it. You rock, truly, you do! I am a nurse so I feel the need to warn you about the Versed, it is a wonderful drug, but can sometimes make kids "crazy", like you don't even know who the child is. I don't mean to scare you, but when our son had it, he went ballistic. Maybe you don't want to hear that, but I wished I had know it at the time (I was a fairly new nurse). I panicked thinking what the h...l did they do to my kid. So, please be aware, she may be cranky, uncontrollably whinny, fussy, and not "your kid". My thoughts and prayers are with you and your family for this up coming surgery and everyday stuff. Love the blogs. A friendly reader. Colleen

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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