Update on Brett-Oct 2007
Hello to everyone. We continue to praise God for His faithfulness and love toward our little Brett. When we arrived in Indiana late August, Brett had stopped his seizure activity. But after being here about 1 week, Brett picked up a cold which turned into a double ear infection. As soon as he began having mild fever again, the seizures started again. Thankfully we were able to get the ear infection cleared up, but the seizures remained for about 3 weeks, with 6-12 per day. We took Brett to Riley September 25 to see a neurologist. He had about 4 in the car on the way and can you believe we’ve not seen any since then. The Dr wanted us to return to Riley to do a 24 hour video EEG of Brett, which we were able to do this week. Brett did not have any seizures that I saw, but we trust that the Dr will get some benefit from the test and help us determine the correct medicine for him. He is such a trooper. We are grateful for the time Brett is healthy and feeling well. He is back to rolling around, doing his “self-stimulation” exercises, and playing with his feet. It is good to see him doing his normal things again.

 Food, Weight, Height
Brett has reached the 20lb mark, which means we are ready for more advanced food. We are looking into a “next step” type of toddler formula. Food taken by mouth is still too minimal to count, so he needs milk that offers more protein and calcium. The nutritionist would like to see his length increase to proportion of his weight. Because of his syndrome he will be small in stature, but beyond that we want to feed him the right food that will help his brain grow and give him all the potential that God wants him to have. I am not sure what we’d do without the grace to put this all in God’s hands. We truly can rest in him and trust in His plan.

Let’s talk Seizures
Thankfully right now Brett is not having seizures. The 8 hour seizure he had definitely left his right side weak. We are glad to report that we are seeing more and more activity coming back. This week I noticed that he is putting his hands together and he is lifting it more when he rolls side to side. My Dr told me it could take 4 months to regain all that was lost. After this, expect that he won’t regain it! At this point we continue on Phenobarb to control the activity. The neurologist almost doubled his daily dose and now we wait for the EEG results to see if she will change anything else. I am hoping she will feel phenobarb is the best for him. We can get it in Haiti and it is an old drug that seems to have stood the test of time. The seizures he was having were in the facial region mostly. His eyes would blink quickly and he would scrunch up his face like he was in a lot of pain. Sometimes his right side would become stiff. We are so thankful that is seems there is no pain involved, since after it is over(30-45 sec) he is smiley again.