Sunday, August 18, 2013

A trip to Iowa (with a fun stop along the way!)

We made our second annual trip to Iowa to meet with the amazing doctors at the University of Iowa. More about that later. We drove this year (17 hours!) and decided to make a fun trip out of it. So, we stopped in Chicago for a few days of family vacation fun exploring a new city. Stephen had never been to Chicago before and it's been about 15 years since the last time I went. We had a great time being tourists and doing almost all of the necessary Chicago things while we were there. And, of course, our girls were almost perfect. We are so blessed to have children who are great travelers and don't mind being dragged around to all of the things Mommy and Daddy want to do. We made our trip a lot easier by staying in a nice hotel right down town. We were able to just walk (or ride) everywhere we wanted to go. I wore Rebekah and we brought the umbrella stroller for Leah, so navigating everywhere was easier because of that, too. The weather was also pretty perfect, so it was just wonderful to spend so much time outside.  And now, some of the pics of some of the things we did!
Navy Pier
On the ferris wheel at Navy Pier
Leah had a great time on our Chicago River boat tour
At the Field Museum. One of Stephen's favorite places. He loved seeing the dinosaurs, especially Sue.
Splashing in Crown Fountain (the spitting fountain) at Millennium Park
Family pic at Cloud Gate (the bean)
Sweet sisters at the bean
We ate at lots of great local places and, of course, had some Chicago style deep dish pizza from Lou Malnati's. We also took the "L" to many places, including Wrigley Field to see where the Cubs play. We took a stroll down the Magnificent Mile and did walking tours of some of the historic neighborhoods in the city. It's hard to believe we did as much as we did in just a few days, but one of the things we have learned in 9 years of marriage, is that we travel well together. And, we are teaching our kids to be traveling pros, too! It was a great vacation.

But, now for the real reason for our trip, Leah's check up in Iowa. We met with the same 2 doctors again this year. Dr. Wilkinson is a vision rehabilitation specialist, who is working with us to help Leah maximize her vision. This includes tips for things to work on at home and ideas for her teachers to work on at school. He wasn't able to do any sort of acuity test, so we don't know if her vision has improved at all from last year. However, we do know that she is using her vision better. He encouraged us about Leah's vision and that she is continuing to mature in her use of it. After Dr. Wilkinson, we saw Dr. Stone, the molecular geneticist opthalmologist. He shared the results from the DNA testing that they have so far. Late last year, we found out that Leah has a chromosomal translocation, and that they were going to investigate that abnormality in the lab to determine what genes are impacted in this chromosomal translocation and what this means for Leah. At this appointment, they told us that they were able to clearly define the area that is involved and were in the midst of looking at the genes in this area. One of the genes that falls in this area of abnormality is a gene that plays a role in the development of the brain and other sensory organs (the eyes). This knowledge confirms the idea that this chromosome issue is most likely the cause of all of Leah's issues. We asked about any other cases of people with the same chromosomal translocation and were told that to their knowledge, Leah is the only one. This is both interesting and a little sad. It means that we have no other cases to compare Leah's to and no idea what Leah's future might look like. Dr. Stone also shared two things for us to be aware of. One is that people with similar retina issues have also been known to have kidney issues. We now need to be regularly checking Leah's blood pressure and kidney functioning (through blood work) to make sure everything is working well. Dr. Stone said that yearly checks should be fine for now. The other issue is that people with similar retina issues also have been known to lose their vision later in life. If this were to happen with Leah, she would be a candidate for gene therapy to maintain her vision. This gene therapy will not increase her vision, though.

So, overall it was a mixed appointment. We appreciate any information we get, even the stuff that's not so good. We need to know what to expect, so we can be ready for anything. And, nothing is definite. Again, Leah is the only one of her kind and most importantly, God is great. He is in control and knows exactly what is going on in Leah's body today and for the rest of her life. He created her and loves her more than we ever could. As long as we rest in those truths, we can face anything. For now, we face making it through each day, encouraging Leah to walk and talk more, and to be patient as she eagerly awaits the beginning of school (Mommy is eagerly awaiting it as well:)). Only a few more weeks...

Wednesday, August 14, 2013

7 Months Old (and 6 months too)!

My baby is 7 months old. It's hard to believe. Everyday she is growing more and more into her name: a determined, observant planner who is full of cheer and love. If you watch Rebekah, you will surely see her watching something/someone else, trying to figure out what it is, if it's good, and how to get to it. She is really working on crawling and is pretty good at backwards and pulling herself/squirming her way forward on her belly. It may be difficult, but if she sees something she wants, she goes after it. And we haven't noticed her getting frustrated. She just keeps trying to get whatever she wants.  She has plans to do things on her own. Like drink from her sippy cup. Most of the time, she is ripping it out of my hands and trying to get a drink by herself. She loves to eat and has gotten good at picking up food with her hands and bringing it to her mouth. She still has to work on the release, though she has successfully put food in her mouth a few times.

Leah was (and still is, for the most part) a content child, but Rebekah is happy. She loves to smile and laugh and is working on waving. Right now it's a whole arm flap, but she pretty much does it anytime you say "hi" and wave at her. She loves being with Leah (though her favorite thing is pulling Leah's hair) and just stares at her in wonder most of the time. She also has found a really cute baby in the mirror that she smiles at, babbles at, and tries to touch. She still loves to play peek-a-boo and enjoys having her "baby back ribs" chewed on, too. She also does a pretty cute "scrunchy face" (see pic below) and we think it's pretty funny!

We never get tired of having her look at us either. When she wakes up from a nap and I come into the room, I am always greeted by a happy, giggling girl excited to see me. And when Daddy gets home, her face lights up at the first sight of him. I don't think we'll ever take that for granted. Our family is better and more complete because Rebekah Joy is a part of it and we are ever grateful to God for blessing us with her.

And now for pictures. Since I didn't do a blog entry from when she was 6 months old, I'll include the pictures I took from then.
Look at those piercing blue eyes
Scrunchy Face!
Look, these are my feet!
Sweet girl