Today was a great day. Mabel was so happy and alert. Occupational therapy was amazing. Mabel sat nicely for a long period of time, visually attended to her toys and even reached with both hands. All of this is quite new for her, as she usually shows no interest in doing anything at all.
Plus, she looked dang cute.
This morning, our friends, Ethan and his mommy Pamela came to visit.
Ethan's mom and I connected a few months ago when she sent out a newsletter to some of the families in Early Intervention whose children were visually or hearing impaired. Ethan is both and so is Mabel so I was more than thankful to get to know them! Pamela is a wonderful woman of God and a great friend to me. We have spent time talking online and on the phone and today's visit was well needed.
Ethan is one week older than Mabel. He has a rare peroxisomal disorder which is a terminal diagnosis. This is a disorder that Mabel has been tested for and will be tested for again when she has her g-tube surgery just to further rule it out. Pamela explains, however, that most kids with PBD don't get teeth for quite a long time and Mabel has a whole mouth full. Although we are sure this is not what Mabel has, it's always good to rule things out as it will lead us in the right direction down the line.
Mabel was very curious about Ethan's feet braces and Ethan was more than interested in her hair. I loved seeing the two of them together and so needed the time with Pamela. It's wonderful to just be able to talk openly with another mom who understands the fears and frustrations that often accompany this road we are traveling. Although Pamela and her husband Jeff have a diagnosis for Ethan, they still face so many of the same struggles that we do with Mabel. I am so thankful that the Lord has led me to such wonderful friends to walk beside during this time. It's such a blessing to me.
Over the weekend Rache, Jeni, Abrian and I took all of the kids (except Mabel) to "Boo at the Zoo." It was such a wonderful time and I cannot wait to do it again next year!!!
As of this moment, Mabel's surgery is still set for sometime on Friday. However, we did have some calls today that suggested it may be pushed back. I should know more tomorrow but we are just praying for God's perfect timing.
I have had a tension headache for days now. Tomorrow I'm treating myself to a massage; pre-surgery. I figure getting de-stressed early in the game is the best option for everyone.
We went to dinner with Katie and Adam tonight which was such a fun time and I watched the Lord move in awesome ways when we got home. We serve a faithful and perfect God and I am in awe.
And I am exhausted.
Until tomorrow, friends....