Papa’s Spa

The week started out with the (now healthy) nurse coming to give Sophia her shot of Synegis, which is a monthly antibiotic she will take to protect her against RSV. RSV can be deadly in preemies and heart babies, so she needs all the protection she can get. She weighed in at 13 pounds, 10 ounces, which meant that she is continuing to grow despite the spitting up and only needed one shot! It must not have been too traumatic for her since she managed to fall asleep almost immediately after the shot. Still, I decided maybe I shouldn’t volunteer to hold her next time since she might get the idea that I’m the one causing the pain!

The next day she was rewarded for handling the shot so well. Two OTs from the school district came by to teach John how to do “baby massage.” The teacher used a doll, while John followed along on Sophia. They recommended using olive oil since it is edible, so Sophia got olive oil rubbed into her legs and arms–no pretty, smelly stuff for her! Apparently, Sophia really started to relax and coo when he was massaging her hands. They cut the session short since Sophia was getting tired but will come back again on Tuesday to finish the teaching session. Later on in the week, he taught me what he learned (see pics on the right). This time Sophia’s monkey Mambo was the teaching doll. She didn’t get as relaxed this time, but we are really glad she tolerates it. Kids with Down Syndrome can often have “tactile defensiveness” (oversensitivity to touch), so we are really happy that she doesn’t mind all this snuggling and massaging.

Siobhan was off from school on Thursday, so she spent the day with John and Sophia. She tried to teach Sophia the ABC’s–thinking she was off to a great start when she responded to “A” with “aah”, but then she proceeded to respond to B, C, and D with “aah” too…

Pulmonology called to say that both doctors agree they shouldn’t do anything during surgery to address her bronchial issues beyond reexamining them, but will also consult with the cardiac surgeon.

Grandma spent the day with Sophia on Friday so John could get his blood typed and take care of other errands. He wanted to see whether he could be a “directed donor” for Sophia. We hope she won’t need blood this time, but wanted to plan ahead. As it turns out, she has A+ and John has AB+ (and Grandma and I have O+), so no one is an exact match. Although her body could accept O+ in an emergency, they want to have the exact match.

Hillary’s (the little blond in the zoo pictures) mom stopped by this weekend and told us that when Hillary went to get her flu shot at the clinic, she saw a little baby there. This triggered her telling each of the other people in waiting room that she “has a Baby Sophia.” Hopefully, she’ll still be this interested in Sophia when Sophia gets bigger and healthier and can actually spend time with other children–she’ll be a great buddy!

Since it was such a beautiful day on Saturday, we took a long walk through campus and just happened to stop by Ben & Jerry’s (and meet Aisling and Siobhan). Now that I’m no longer eating chocolate, I had to make adaptations to my usual sundae, but it was still yummy. On the way back, we passed throngs of students returning from the Metrodome after watching their team lose to NDSU.

Today Sophia tried carrots for the first time. This seemed to be her favorite so far (although it could just be that she was more awake). When I went to feed her her milk, I could see that some actually got into her tummy (as it came out into the tube). Wow–it didn’t just get all over her face! She took a couple of honest-to-goodness bites–not just licking her lips. Hopefully, she’ll come out of surgery continuing to be willing to try some new foods.

We have pre-op on Friday, and by this time next week we will be in the hospital prepping for surgery. Since we haven’t had a chance to talk to the doctors yet about the procedure, I thought I’d better re-read our medical books. That really wasn’t the greatest idea–the first book said that the survival rate for heart surgery to repair a AV canal (which Sophia doesn’t actually have since she does have a mitrial valve, but does have the two sets of holes) is 75%, and is higher for just a VSD (but she has the ASD too). The second book said that fewer than 10 percent have serious complications from heart surgery. One in 10 and one in four really don’t sound very good, but since both books are 12 years old, I’m hoping the odds are better than that by now. I may have already mentioned that the ideal weight for the surgery is 20 pounds. Hopefully, Sophia will be 14 by surgery, which is a little small, but is still much better than the 7 pounds she was when they thought they originally might have to do surgery. I guess we’ll wait to see what the doctor says on Friday.

Comments

  1. wish I lived there, I am A+ and would be happy to be a donor. From everything y’all have said, I am sure she will be just fine- she seems so strong for such a little girl. The baby massage is a great idea- I used to love giving them to the little ones I worked with, it’s great for constipation πŸ™‚ lol.

  2. I think I am A+ I will find out and call you if you are looking to store blood before surgery. Deb and I are cousins after all–family blood, baby!

  3. Cousin Stacy says:

    Howdy !! Just checking in to see how you guys are doing. Sophia, I just love your spa pics!!! TOO CUTE!

    Love to all.

  4. Kisses to you all right now. Am happy you have these cool massage skills as my back is a little tweaked. Just whenever, you might be busy. πŸ˜‰ I’d offer whatever blood I gots, but one lousy trip to Brazil and I can’t donate anymore. Plus it might have made John nervous… E

  5. Cousin Kelly says:

    I just want to wish you all the best this coming week. Sophia will be in our thoughts and prayers as she recovers from surgery. We all love you!