Meeting the Neurosurgeon

We met with the Dr. George Jallo today at Hopkins. He is the neurosurgeon who will perform Avery's surgery (providing that the EEG still indicates her candidacy). He is a nice man, direct and to the point. He is not much of a chatty-Kathy of any sorts, but I would say that is why he is a neurosurgeon instead of a neurologist. Surgeons, especially brain surgeons, are typically a special breed of person...somewhat essentric in my opinion. He was great at answering questions though and that was very important to us. The jist we got from him was that Avery's case is not as bad as we were sometimes led to believe by the Indianapolis doctors. Dr. Jallo did not have any concerns about the surgery or her potential prognosis by anything he saw on the MRI completed here yesterday. In fact, he indicated that he had done a hemispherectomy on a boy who had a much, much worse case and that he was doing very well post-operatively. I aksed lots of questions about the physiology abnormalities that were mentioned on Avery's Indianapolis MRI reports and Dr. Jallo told me that they had no bearing on the surgery or her potential outcome. In fact, he acted as if they were not uncommon to such cases. That made us feel a whole lot better. I also asked him if he had noteiced any structural abnormalities on her right side based on the MRI and he said that it looks fine to him. Avery's neurologist in Indy had mentioned that there were some structural abnormalities on Avery's right side too (but nothing near the degree of the left side). I think she was basing that on the EEG results, not the MRI. Anyway, Dr. Kossoff (Avery's neurologist here at Hopkins) has indicated that he sees nothing on the EEGs I sent from Indy to indicate anything unuual on Avery's right side (the non-HME side). In fact, the unusual things that the Indy neurologist pointed out are commonly seen on the non-HME side of patients with HME. That is really comforting to know. I guess the inexperience in the Indianapolis team has led to some concerns which are not really concerns at all, but that are actually normal to children with HME. What a relief! I should say here, though, that we still have Avery's video EEG on Thursday and Friday this week and it is very much important information...so the picture is not yet fully complete. If those results continue to show seizures only initiating on the left side and nothing truely abnormal on the right, then all should be well to proceed. Let's all keep praying for that and please thank God for todays productive appointment and the more comforting news it brought. On another note, Dr. Jallo also said that everything Avery is doing right now has to be coming from her right side. (This reiterates what Dr. Kossoff said when we were out here for Avery;s first consult.) This is because the left side is so pervasively malformed that he does not think it is contributing a single thing except for seizures and interference with the right side. This is great because Avery is making volcalizations and we can reason that they are coming from the right side and that seems to indicate that the "speech" has likely transferred already. Consequently, we should be able to reasonably expect that, with sucessful surgery, she will some day talk. In fact, when we talked to the clinic coordinator, Diana Pillas, she indicated that all the very young patients they have had all talk because the speech is pushed over very early already due to the malformation (it is not pushed over because of surgery, which is more that case with Rasmussens kids). That was awesome to hear! We also asked Dr. Jallo if he sees anything different with left versus right side HME with regards to diagnosis, especially in regards to speech, and he indicated that they don't see any real differences. Again, great news! We have been so worried about the speech because communication is such a part of life function. It gives us great hope for Avery. Surgery has not yet been officicially scheduled, but it looks like they are preliminarily looking at Sept. 21 or 28. This is all dependent upon her EEG and the case conference results of next week. Avery's case will be presented at that case conference and all the doctors will discern whether or not they agree in the results and that surgery is the appropriate next course of action. Dr. Kossoff seems to think that really it will be just a formality, but it is the standard operating proceedure...(and it is good that they all work together to make sure that they are all acting on the best interest of the child). Jon and I are happy to be pregressing and are looking forward to what may lie ahead for Avery. We thank all of you for your past and continued support. We thank God for that support every day! Please keep Avery and all these children in your daily prayers, all well as their parents. Some of the parents are absolutely sensational. How lucky for those kids, huh!?!? Well, I should end this here as this post is already incredibly long. Take care and talk to you all soon! Love, Holly