Traveling to all 50 states has been on my bucket list for some time now. I have now crossed Texas off. Later this year I am going to check Massachusetts off. After talking with other families, Luke and I have decided to check Boston Children’s Hospital out. Originally, the plan was to go down to Dallas and have Dr. Fearon (an Apert expert) do all her surgeries. While this still might happen, we want to explore all our options. It is crazy to think that this one wish of mine is happening….just not in the way I thought. But, isn’t how that usually works? Things not going as originally planned. Luke and I had grand plans for our life. We would finish college, get jobs, get married, buy a house and have kids some day. Well….all those things have happened, just not the way we thought they would. It’s okay though….crazy life makes for fun stories to tell grandchildren right? Life has thrown us ups and downs. Phoenix has defiantly been an up…but Aperts….not so much. Don’t get me wrong I love Phoenix and who she is 100%. Yet, there are times I want to cuss out Aperts. I want to scream and shout till my voice gives out. I want to take Phoenix and run away to the county and raise goats and grow peach trees….somewhere where having tons of cats isn’t look down upon. On the other hand, I am content with this new life. It is not what I planned…but, thankfully, it is what God has planned for me…. and His plans are always better than mine.
After having some issues with Children’s Mercy here in KC we finally have an appointment with a sleep specialist so that we can do a sleep study. However, the appointment isn’t till May! I was given the okay to call each day to see if there was a cancellation. There should be a cancellation before May right? At Phoenix’s last check up her pediatrician found a heart murmur….which is typical for kiddos with Aperts. She will be having an ultrasound just to make sure there is nothing else going on. Today, her OT suggested that I call an ophthalmologist for her eyes. Her eyes are further apart then average so they have a tendency to look in opposite directions. Again, typical for Aperts. I didn’t even know what an ophthalmologist was five month ago.
Phoenix is growing like a weed! She is getting so big…..I am having to remind people that she is younger than she looks! Recently, she started rolling from back to belly! Which is great except when it happens when I put her down for a nap…. then she cries till I go in and flip her. Little Stinker. I am consistently being amazed on how she is figuring things out. Earlier this week I placed a block next to her. She squeezed the block next to her leg with her arm, lifted both her arm and leg at the same time to bring the block up so she could hold it with both hands. I made her do it several time to make sure it wasn’t a fluke. It wasn’t! A few days later she started picking toys up with her feet to and bringing them up to her hands! Also, she is starting to scoot off her play mat. Yikes! She is becoming mobile!!
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.