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Big Changes and a Little Pirate July 27, 2012

Filed under: Uncategorized — ryangrace11q @ 12:44 am

Ryan’s been going through a lot of changes lately and there are more to come!

Sunday was Ryan’s 10 month birthday.  She has really been using her hands a lot more since the use of the Kinesiotape on her back.  She brings her hands to midline more, she grabs at toys that are hanging above her, she’ll bang them together, and she’ll even put some of them in her mouth!  This is a great developmental skill.  It will help her entertain herself and eventually lead to feeding herself.  Ryan also loves playing pat-a-cake.  She’ll let us know that she wants to play again by moving her arms!  I’ve been waiting to see this and it’s really fun to watch her actually play and enjoy herself!

Entertaining herself while the moms get ready in the bathroom.

Monday was an opthalmology follow-up with Dr. W.  Even though she pretends to be nice, she basically sucks.  She spends more time typing on her computer than actually speaking to us.  We asked about glasses for Ryan and she was noncommittal, saying that we’ll see after her next appointment.  We asked about possible depth perception problems because of Ryan’s difficulty with grabbing and she blamed it on her coordination.  We told her about another boy with a similar deletion and his vision issues and how because of them he couldn’t keep his head up either and she dismissed it and said something about certain behaviors that she would have.  We told her about Ryan’s wandering eye and after waving a couple of toys in front of Ryan’s face she simply said “We’re going to patch her eye until you come in again”.  What?  She took out a patch, quickly showed us how to put it on her good eye and told us the nurse had a folder of information for us.  She didn’t tell us why Ryan needs this (although we already knew it was to strengthen the weak eye) or what it’s called.  Amblyopia.  It’s a lazy eye.  I googled it.  So Ryan gets to be a pirate for 1 hour each day.  Dr. W. didn’t even tell us how long to put the patch on, I had to ask.  Sheesh.  You’d think that there would be a requirement of a good bedside manner to work in a Children’s hospital.  Anyway, we go back around Ryan’s 1 year birthday and she’ll get dilated again to see if she needs glasses.  We’ve already decided that we’re going to get a second opinion.

This patch is dedicated to Captain Nick.

Today Ryan visited the feeding team (ST, OT, nutritionist, nurse practitioner) and let them watch her eat.  They were super impressed – as we knew they would be!  They loved how well she ate her baby food and cereal and she also showed them how she can eat watermelon and small pieces of baby puffs.  They gave us some helpful hints to get her to manipulate food in her mouth better and told us to go ahead with stage 2 baby food and offer her more table food.  Since she dropped a bottle in the last couple of months the team wants us to up her calories in her formula again as well as add butter (yum!) to her baby food because even though she’s gaining weight, they’d like to see more.  The nurse practitioner loved Ryan.  She showered Ryan with sweet compliments and made us feel good about how things are going.  It’s always nice to have someone acknowledge how hard things are for us and what a little angel we have.

Finally, we have made a BIG decision about childcare.  We thought we had found someone to watch the girls but decided that it would be best for them to be in a more stimulating environment with other kids.  After interviewing a lot of in-home daycare providers we have decided to put the girls in a traditional daycare facility.  At this point, we have to find a place that is good for both girls and is also convenient.  Charlie will be in her own class and have pre-school instruction throughout the day so we won’t have to worry about getting her to and from pre-school two days a week.  Ryan will be placed with the babies aged 6 weeks to about 6 months for right now.  Once she can sit better and gets a little more mobile, she’ll move on to the next room.  There are a lot of benefits to the facility.  It’s next door to my place of work, it’s clean and reliable, there are cameras so we can watch the girls, they provide all the food (even for Ryan) and it’s STIMULATING!  We know that Charlie will have a ball but we’re also hoping that Ryan will benefit from seeing other kids at her developmental stage.  There are cons too.  The girls won’t be together and Charlie will miss Ryan a ton.  It’s also a lot more money.  Plus, kids always get sicker at a daycare.  All we can do is try…and hope for the best.

Cool chicas

Testing out the “Nap Nanny” from Gaga.

Sweet baby


4 Responses to “Big Changes and a Little Pirate”

  1. Caryn May Says:

    Great news. Love the pirate dedication to Nick. I think you’ve had good news. Sorry the doc seems standoffish. You know your child the best. Although I am always amazed at the high ratings and how lucky we are to have our Children’s Hospital. I’ve seen miracles with my own students and read so many files…amazing progress. Your kids may have a few more sniffles but they will love the social life at daycare 🙂 The stimulation for Ryan is key!

  2. Liz, you and Katie are such loving, caring, great parents. I love reading this blog because even though you both have your hands full, you take time to blog about the experiences which also helps you maintain your sanity. I teach my freshman students at Miami how to blog and we use wordpress, too. It’s such a release to write. Hugs to all.

  3. Sarah Link Says:

    You both make me proud! 🙂

    • Maryellen Leigh Says:

      Being in the health care field and doing case conferences with lots of different docs – this one may be put off that you are know alot about Ryan’s illness, seek out alternatives to traditional therapies and you are asking a lot of questions. Being an informed “patient” often puts off some doctors. But how ironic they teach us all to be informed and educated on our health care needs. It would seem in this case this doc may be on a one way power trip and you rattled her cage. I still can’t help but wonder sometimes if having two awesome and educated mommies rattles some professionals cages…. just a thought…. By the way – she looks do damn cute with that one eye patch!! Love you!

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