Today's Update - James' appointment day

Jacob once again had a pretty good day. We did have a little bit of a scare this evening when Daddy accidentally tugged on his SP tube (while trying to move him from his wagon to the bed). Thankfully, it did not come out, but it did cause Jacob some pain and discomfort. Otherwise, we enjoyed a visit from Aunt RoRo, Ronnie and Joshua and also some therapy dogs. The Children's House will bring in a few dogs every Tuesday for the children and families to enjoy. This week, they brought in two - Rusty and Abbey. Abbey is a very furry and lovable Golden Retriever. Rusty is, well, about the size of a small horse. He is a Great Dane and was quite a hit with all of the little ones as he is actually taller than many of them. Jacob, James, Ronnie and Joshua (and the rest of us) all had a great time with these dogs.

Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.

It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.

Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.

"Let my hands perform His bidding, Let my lips speak forth His praise"

Mommy and Daddy