Eyes

We saw the pediatric opthamologist today. Aggie had some pigmentation on the back of her right eye that needed further investigation from a couple months ago. The conclusion is this; she has some "hyperpigmentation" commonly known as "bear tracks" which presently appear to be benign. She is slightly far-sided, but not enough to need glasses. Her lacrimal ducts are clogged, which we knew, however this Doctor is recommending that they be probed to clear them. Which would be another sedated procedure. With two on the books already, I'm not feeling too eager about this. On a positive note; this was Aggies 3rd eye exam and by far the best she's tolerated it. Praise God for hearing my prayers and answering!

For now

Well, this week has been a little different. My parents are here visiting, they made the trip to help out for the surgery that was a no go, so we still got to enjoy some time with them. We've kept busy with soccer, the kids had their first game today. Hosea basically runs in circles the whole time and Shiloh skips and dances across the field. Neither one show much interest in actually making contact with the ball and would prefer to get out of the way of the herd that surrounds it:) They seem to be having fun, getting exercise and enjoying time with other children so we will continue.

Next week the kids and I are headed to Missouri to stay a week with my brother and his family. I'm looking forward to some time away.

Surgery Rescheduled

We found out today that Aggies surgery has been rescheduled (Oct. 12). She had some pre-op labs drawn Friday and they indicate an infection, which is probably from an ear infection that was treated last monday. The surgeon did not feel comfortable proceeding with her WBC count being high. Her pediatrician saw her today, and says she looks good, but is putting her on a preventative antibiotics for 2 months until both surgeries are done (tummy and ears). I am struggling with frustration and accepting the Lord's sovereignty over this. I really wanted to get it over with! But I know that He is in control, I wish my initial feelings and thoughts reflected this truth.

Packin' it on!

Aggie gained some weight! She is tipping the scales at 16lb. 11oz.

(Here she is being big)

Sentences worth documenting

A couple weeks ago Shiloh and Hosea were outside hunting down a lizard we saw on the back window. They found him and managed to scare him up the side of the house near the roof. I'm watching out the window, a short dialog took place between them and they both sprinted in the back door straight to Mike and I. A winded Hosea says, " We had to hurry up and run inside before the lizard jumped on our head, ate all our hair, and gave us a haircut like daddy."

Today I packed a picnic to go to the park, the weather has been beautiful! We were setting at the picnic table and Shiloh is looking at her PB and J, and says, "sandwich........ like sand....... and a witch..... that doesn't sound yummy at all". I have to agree, she has a good point.

Blessing!!

At occupational therapy Aggie rolled over from her back to her front for the very first time!! This is very exciting, as it is a key step to her gaining some mobility. I think she did it to try and get away from the therapist b/c she doesn't like her arm stretches. She was telling her "ahh da" which I think is her version of all done. I love seeing her have preferences and opinions about things. In this case a strong opinion is better than no opinion at all.

Sitting up!

Saturday Aggie sustained a good independent sitting up session for several minutes to play her favorite game of "catch". It's such a blessing to continue to see progress. She is also manipulating some of her toys more, she likes spinning things.

Feeling the Need

This week has been a little on the rough side for me. I've been in the throws of the new schedule for 3 weeks now, and am finding that time I once devoted to chores is by natural priority being devoted to 1. therapy 2. school 3. dinner. Then the next thing I know it's 9:00 and I am wishing I had hit the pillow at least 30 min. ago so that I might feel rested to do it all over again. My man bailed me out Saturday and helped me A LOT!! Thank you beloved, you have served me well!

Exhibit A: 10 loads of unfolded laundry (the only exhibit that I dared to take a picture of)

Additionally the last 2 weeks I have been coordinating with 2 Doctors to capitalize on Aggies up coming sedation for her tummy surgery. The neurologist had mentioned getting a muscle biopsy which is the only test that will confirm a mitochondrial myopathy. Her blood test came back negative, which essentially tells us nothing since it does not rule out the disease. (What I tell you next was my mothers idea, she's very smart!) So I called the neurologist and told them Aggie was going to be sedated soon and if there were any more labs or tests they were wanting that I would prefer then do it while she was already asleep. I specifically mentioned the muscle biopsy since at her last appointment they mentioned that would probably be the next step, but chose not to see her again until November to make that decision, frustrating! Anyway to make a long story short after 2 weeks of calling people, leaving messages, and following up on messages (aka. being a squeaky door) it was finally accomplished, Aggie will have a muscle biopsy also on September 21st. This is bitter sweet for me, as I earnestly want to know if our baby has this disease and don't want her to be sedated again for it, she shows many symptoms of it and an early diagnosis just means early intervention. Unfortunately it is a genetic disease with no cure, and all the treatments are based on correcting symptoms. It is a pretty icky disease to have. Additionally if this is what Aggie has, because it is a maternally inherited genetic disease, it means that I probably have it too and to this point in my life have had very mild or no symptoms. This has been a very sobering reality for me to swallow. Now I don't want to say "what if" in any circumstance, b/c the Lord gives us the grace for one day at a time. For a Dr. to test for the same disease twice, does show they think it is very probable that someone has it. This news has caused me to fall into the sin of worry, i cried all day on and off Thursday. I have since repented of my sin. Mike said something that really hit home for me. "We know we need a savior, but sometimes we FEEL our need for a savior, and that is a sweet place to be, because in Christ we have one." I'm sooo thankful for my savior!!!