July 18, 2011

Update: 7/18/2011

Grant: There has been a lot of change for Grant. Because the clinic Grant's therapists work for decided not to renew its contract with the CDSA, we were forced to find all new therapists - FAST (I was informed a mere two weeks before the contract expired). It was quite a scramble. I desperately did not want a laps in Grant's services and it was important to find an agency that would take our health insurance. It was hard to say good-bye to all of Grant's therapists but I decided from the moment I heard the news that I would look at it in the best light possible. Grant is young enough to handle the transition and it will be good to get some fresh perspective on Grant's progress. Unfortunately, with the short notice I received to find new therapists (speech, physical, and occupational), combined with the fact that people are taking summer vacations now, there has been a small laps in services. Please pray that we can get a firm therapy schedule in place and that the new therapists will be as aggressive as I want them to be (I have high expectations for Grant and need the therapists to get on board quickly).

We are also praying for wisdom on how to provide another very specific therapy for Grant. We believe Grant needs ABA therapy (Applied Behavioral Analysis). It is a therapy most children with autism get. However, because Grant has been diagnosed with Fragile X Syndrome and not autism (see Our Story), ABA therapy is not covered. While the therapy is very expensive, it has a huge track record of being extremely beneficial for children with autism and related disorders (like Fragile X). So, we are trying to do the best we can with what we have. Grant is continuing to progress and we are very thankful for that.

One more thing... we got the date for Grant's appointment at the Duke University Fragile X Clinic!!! We will be traveling up to Durham at the end of September for the much anticipated appointment. We are excited to receive helpful insight. I feel like I have been clawing for information and help thus far. Grant will be intensely evaluated and we will be counseled by two amazing doctors who have dedicated themselves to Fragile X. Hopefully we can get some answers to our many questions!

Wesley: I can't believe he's 16 months old already. I can hardly keep up with the little guy. It has been fun seeing him develop and watch his personality emerge. It seems like he is picking up a new word every day (the latest being "No!"). He is a great influence on Grant and it is a joy to watch the two play together. They are already close brothers and friends. Wesley is most definitely stubborn and has a strong-will nature about him. He is spunky and often has a mischievous sparkle in his eyes. Wesley is always doing something to make us laugh. His eating still is an area of concern (the boy just doesn't like to each much), but his doctor said that it is nothing to be alarmed about... yet. Wesley is active and has "good diapers" :) so we will just continue seeking and trying creative tactics to fill his tummy.

Grant and Wesley love Sadie-kitty. Thankfully the boys have come a long way in learning to be gentle and she is incredibly patient with them.

Aaron: Aaron has been trying to get as many painting hours in as physically possible. He has even worked many double shifts this summer (praise God for providing all the job opportunities so that Aaron can work the extra hours!). It is because of Aaron's work ethic I am able to be at home with the boys. Even after he has worked a long day, Aaron finds the energy to wrestle with the boys. He is an active dad and husband who eagerly spends time playing the boys and often helps me around the house. I am blessed beyond measure. Aaron is already gearing up for another school year; checking out art books from the library and reviewing lesson plans.

Karen: I recently ordered a couple books on ABA therapy. I am planning to educate myself on the subject so I can provide the therapy on my own as much as possible. Most children who receive ABA therapy from a specialist spend several hours each day in a session. Naturally, I will not be able to focus that intensely on the therapy but I have begun to pray that God will multiply my efforts. Between all of the normal housework and taking care of two energetic children, I attempt to squeeze an adequate amount of therapy time for Grant. Just as God multiplied the small amount of bread and fish to feed a multitude, I know He can supply our needs and multiply the benefits Grant is receiving though his current therapy. We serve a great God!

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