Yesterday we spent the WHOLE day in Grand Rapids. It was a long day but a lot of fun. We had 3 different appointments scattered over the course of the day with time left over to go to the museum and have lunch.
Our first appointment of the day was to the Cardiologist for Ms. Kaitlyn. It was a hassle free quick visit. No echo cardiogram this time. The doctor said she was doing great and we didn't have to go back for a YEAR! I have to tell you how crazy this all is. Her surgery was only 5 short months ago. Those first months of her life she was such a sick baby, and here we are such a short time later, her heart is repaired and she is as healthy and active as ever! It's truly amazing, seriously there are times when I think back and can't believe that was our "crazy" life this past fall!
With the rest of the morning free we headed to the Public Museum. I had never been to this museum we always went to the Children's museum. We had a blast. It was 3 stories high and had so much for the kids to see and do. I think the Bug exhibit and the Planetarium were the biggest hit among the boys. I have a lot of pictures to share and I'll do it soon on a separate post.
After the museum we headed to lunch, we were all starving, our morning had started very early. After lunch we headed to the Pediatric Opthamologist for a follow up appointment for Brady and Kaitlyn's first eye appointment. Both of the appointments went really well. We brace ourselves each time we head to the eye doctor. Brady has been wearing glasses since he was 2 1/2. It is very common for children with glasses to get their prescriptions changed often, its been every 6 months for Brady. Which gets quite expensive. I am happy to report that Brady didn't need new glasses this time. Yay!!!
Next up was Kaitlyn. In the last 6 weeks or so I had been noticing Kaitlyn's eyes crossing. We aren't new to estropia, this too is what Brady has, but I was so sad Kaitlyn was getting it so young. All I could think is how in the world do you keep glasses on a 9 month old baby face. (She's 9 months old today, Happy 9 months baby girl!) And rubber glasses, really, very practical, but not cute! No I'm not that vein, but on a baby her face would be lost behind those glasses, and having Down syndrome, it is clear she already has a disability, and I will spend my whole life trying to get people to see her and not the stereotype. Glasses would be just one more thing that people would see instead of the beautiful baby behind the frames.
So what did we find out...
Kaitlyn is somewhat farsighted and she too has intermittent estropia (crossing of the eyes some of the time). We can expect glasses in her future. How soon? We are not sure! He wants us to go back in 3 months.
This was the doctors explanation...
Due to Kaitlyn having Down syndrome, therefore low muscle tone, and having had heart surgery, developmentally she is somewhere in the 4-6 month old range verses her actual age of 9 months. So when deciding the plan of action he took that into account. It is "normal" for a 4-6 month old baby to still be working on developing the eye muscles that stabilize the eyes. So for now we wait. When we go back he is hoping to see some improvement, if not we will talk about options (glasses or patching of the eyes).
So for us it was a great day! We spent time as a family. Medically speaking the kids are doing great, and the day didn't cost us a small fortune! Awesome day!
Hope you enjoyed the pictures I snuck in the post. I will never miss an opportunity to share my beautiful kids with all the friends and family who come to read and SEE them.
One more quick update. My parents are coming this weekend for the week. My Mom is officially in remission and can't wait to get here and hug her grand babies. We are all so excited. She hasn't seen Kaitlyn since she was 5 weeks old. It will be a happy "extra special" Mother's Day for sure!
We've had a busy few weeks. We are outside every second we get trying to enjoy life despite all the doctor's appointments, IEP's, and end of the school year activities.
Last week, finally, after 8 months we got a visit from my parents. I am so excited to announce my Mom is in remission after an aggressive fight with bone lymphoma. Praise God! It was a rough time for everyone, but she did it. She dug deep and found strength she didn't know she had and fought. I am so PROUD of her!!! Thank you to everyone for all your continued prayers. Below is a picture of Kaitlyn in a cute little dress my Mom made for her. Despite Kaitlyn's rapid growth (18lbs 11oz) she fit into the dress great!
Below are several more pictures of the week with my parents. The week flew by but we had a great overdue visit. It is crazy to think the next time we are able to see them we will have a new addition to our family (9 weeks to go).
