Tuesday, August 11, 2009

Strabismus Surgery Update and More

We took Sammie B to her one-month follow-up appointment with Super Doctor from the strabismus surgery. B and I were both worried that he'd say that she had to have the surgery again (always a 20% chance) because we felt like she was still crossing her eyes sometimes (though not as much). BUT, her doctor thinks her eyes look GREAT . . . and the remaining crossing is simply her brain learning the new position of her eyes (incredible how our brains work, right?). So that was GREAT news. SUPER DOCTOR was SUPER PLEASED and so are we!

Of course, Sammie B can't seem to catch a break, so in other news . . . there's the rash. A few weeks ago, she started getting these little bumps, which at first we just thought were pimples, but then she got a few on her hand, so we got worried. Our nanny took her to the doctor while I was out of town, but because our pediatrician is out (having strabismus surgery actually!) she had to see someone else in the practice. He looked the bumps over, and wasn't concerned. He thought she probably got some sort of bug bite at the park or something and had a reaction. So, he sent us home with instructions to use cortisone cream, and we did. It occurred to me that the bumps started right around the same time we added wheat and dairy to her diet (which we did within about a week of each other) so on a whim, I decided to just take them both out of her diet again. Rash cleared up, and we assumed it was the cortisone cream . . . until we gave her something with wheat in it yesterday and . . . bumps are back. SERIOUSLY?!!! A wheat allergy on top of everything else? I know, not a big deal, but another worry. When we saw Super Doctor today, he immediately noticed the rash, and we told him the story. He said it didn't look like bug bites or a food allergy to him but that we should keep wheat out of the diet awhile longer, add it back in after her rash is clear again, and see what happens. He said you should always do the diet change twice if you suspect a food allergy, to rule out coincidence. AND, if its not a food allergy -- he told us he'd get us in to see his wife -- who coincidentally is also a pediatric dermatologist, and he promised us -- there's no rash she can't solve! So, another specialist to the collection. I'm hoping it is a fluke thing and we don't need her. The rash doesn't seem to bother Sammie B at all. She doesn't notice it. But she does kind of look like she needs some Baby Proactive or something!!!

Last night Sammie B had a good PT session . . . but I didn't!!! The PT suggested a compression vest for Sammie to wear a few hours a day to help her with her balance. I don't know why, but it really upset me. She looked ADORABLE in the vest (and besides, it would go under her clothes) and I know this isn't about vanity, but for whatever reason, it threw me for a loop. Maybe because its a physical reminder that my Bean isn't "typically" developing? We aren't sold on going with the vest yet anyway -- though we THINK Sammie seemed more stable during PT while she was wearing it, we aren't totally sure since the vest wasn't her exact size AND she's been seeming more stable anyway. So . . . before we spring for a vest of her own (at the tune of $500!!) our PT is going to see if she can borrow one Sammie's size, we are going to talk to our doctor about her thoughts on it, AND we are going to talk to an OT we know about her thoughts. It is silly of me to get so upset - if its something that will help Sammie, of course we'll do it. I just had a moment. Cried. Whined. Said, "its just not fair that our baby has to go through this" to B (and he reminded me that many other babies go through worse, which is true and important to remember amidst my pity parties).

I also got online to my favorite LA mommy site and did a search for "compression vest" and found a post from a woman over a year ago that wrote that her daughter who had low muscle tone was doing PT and using a compression vest. I sent her a message, and got one back from her today with her phone number asking me to call her so we could talk. I did . . . and am so glad I did. Her little girl is almost 3, has done PT since she was 1, used the compression vest for about a year and a half, and is doing FABULOUSLY now. She no longer wears the vest. The ONLY assistance she uses now is a super low profile insert in her shoe to help with her balance. . . but she's walking. She does PT only once a week now and is in a gymnastics class to continue to work on motor skills and in the words of her mother "charms the world, and no one would EVER know that she has any developmental delay issues." SO SO encouraging. It felt wonderful to talk to someone that truly truly understands my feelings and worries. Who knows that there are good days and bad days and days where the worry just won't stop. We may even plan a play date, which is great. The mommy site I use has just been such an incredible resource for me, and I've met some incredible women through that site.


Melanie said...

I am so glad that Sammie is doing so great!!! Don't stress about the rash and possible food allergy just yet!! Ryleigh had an allergy to bananas as a baby but outgrew it sometime after she turned one. She also had an allergy to milk after I weaned her and started her on milk. It cleared up after awhile, we gave her soymilk in the meantime. Madison also has an allergy to bananas. I am sure hers will clear up when she gets a little older too. It's seems that sometimes they have allergies to certain foods, but outgrow them after they turn one. Another thing that causes rashes on my girls, especially as babies, is a change in bath/lotion products or laundry products. So that's something to look at too.

Eye Health said...

Great post! Been reading a lot about this surgery. Thank you so much for sharing your story!