Well I am searching for another great Southern saying for how busy I have been today, but they all escape me. If my true Texas girl Ginger was around I am sure she could throw a great one out there because she has some great ones. Anyway, Sarah is still on vacation so work has been extremely crazy, but I did take lunch hour today (I didn't yesterday). Today I actually spent my lunch hour at the pediatricians office with Mike and Jude. Jude was getting his ears checked out since he has been fussy. The good news is his ears, lungs, and nose are clear, but his well.........his little poo is not. He is having some issues because of all the medications, and the poor boy is just having problems. So we are now adding some fiber to his formula to offset the issues with the drugs. Who knew a 4 month old needs some fiber. It was great to see Jude in the middle of the day, and I read the Great "Green Eggs and Ham" to him as we waited. He would follow my voice for a bit, and then would trail off into his med induced slumber. Have I mentioned I love our pediatrician though? I really do! He even suggested that Mike and I call the only other patient he has that has almost the same diagnoses Jude does. It seems she is a little girl, and her parents love her dearly although he did acknowledge she does not function very well at all. I think I will eventually call her once things calm down a bit. I also explained to the pedi that I am thinking of getting a second opinion from a neurologist at Children's in Dallas. I found a referral to a woman that specializes in infant epilepsy. I explained I didn't except a different diagnoses, but maybe a different plan of action. Plus I reiterated to him that the comment from the current neurologist that "it takes little more than a brain stem to be a baby" in response to Jude rolling over still IRKS me. The pedi said it's always great to get a second opinion, and he would gladly write a referral so we could go see her. So it seems we will have two neurologist appts this month with two different doctors. From there we will seek each individual doctors plans of action, and decide which one we like best. I am sure the neurologist we have seen is great, but we are new to this scene and we feel a little lost still. I would like more interaction from the doctor and more direction. I would like someone to follow up with Jude when he starts a new medication. I did call the neuro today and updated the nurse so she could relay the information to the primary doctor. She seemed concerned that he is still seizing through the topamax..sigh. The pediatrician said that the other girl he mentioned has had serious issues controlling seizures as well. So I guess sometimes the right combo of drugs is not out there, but Jude is still little. Plus this is just our first round of meds so I am by no means losing any hope at all that we will find our right combo!
I got back to the office a bit early from the lunch appointment so I starting researching Seizure response dogs. I am amazed at what these animals can do!!! They are truly work animals, but they love the child/adult as well. They are not recommended though until the child is at least five, which is disappointing, but understandable. It would be great though to have a dog that could signal an emergency if Jude had a seizure at night. The more I thought on it though the more I realized Jude will be in our room for awhile though anyway. So as Jude gets to five a dog of that capacity would be great, and would be a service/seizure dog. If Jude is disabled the dog can help Jude do a variety of things in everyday life, and still possibly alert to an impending seizure. Kudos to the non profit places that spend 2 years and $20,000 training these animals!!!! They then place them in the homes of these children that need help. So I am all for supporting these companies. I was just in awe today reading the stories, and seeing the pictures.
Everyone have a wonderful night!