I just wanted to give a quick update on Trace for those who are interested and for my records. This blog has been an amazing tool when trying to remember things when it comes to Trace's health.
All in all Trace has been doing great, no major issues or changes, so we are very happy at the Wehring house!
Back in May we saw Trace's immunology/allergy specialist who voiced her concern over Trace's nose bleeds. I was to stop Veramyst if they continued, I did and they're still happening. We saw Dr. P again last week for Trace to receive his MMR. She said give it two more weeks off Veramyst and see his ENT if it continues. Trace had another bleed last Friday and I'm hoping it was his last. His MMR went great - he had only one seizure and no fever! The bad part was the visit lasted 4 hours, Trace had to endure a painful shot, and take extra doses of yucky meds. He's my little trooper though and did it all with only a few tears.
He has been a little "off" the last three weeks. Not sleeping well and waking up early (4:30 - 5:00 AM). Crying outbursts lasting 30 minutes or more. Nothing we do seems to help - once again I wish he could tell me what's wrong. He has had some temperature control issues indoors. He feels very warm to the touch and is very tired. I can remember this happening around this time last year too. He's had a runny nose and cough since June 5th. It will probably hang around for another week or more. It always takes Trace quite a while to get over them.
He's definately been feeling the effects of the summer heat. He can't be outside for 5 minutes without turning completely red and hot. He has a cooling vest, but it does no good for him when it's this hot. For those who don't know, Trace can't sweat and therefore his body can't cool itself which can lead to a heat stroke. The docs believe it's a side effect from one of his seizure meds, Topamax, what a lovely side effect right? But the docs and I both agree it's better to have the seizures under the best control possible. So it's nothing but water play for my little guy - which he is not opposed to at all!
He enjoyed some playtime in the water last Sunday on his slip and slide. He can't actually run and slide, but he can slide with Dada's assistance. Trace would sit, Daddy would give him a good push and Trace would scoot back on his bottom. Eventually Trace even braved it on his tummy! I think Dada's arm got quite the workout. So did Trace though, because he was saying "nigh nigh" at 3:30 PM. He curled up on me and was asleep by 4:00, woke up at 5:00, took meds, vomited his meds back up, and only woke a few times. He was up at 3:00 AM to eat and fell back asleep until 6:15. I was happy not to be up before the roosters!
Trace will go in on Monday AM to have another VEEG. I pray he can make it through attaching all the leads without too much of a meltdown. I pray our favorite nurse is there - he's amazing and Trace loves him. I pray I can make it through 23 hours stuck in a small room with Thomas and he not drive me completely crazy! :-) Seriously though - please pray for good results for my little Mister.
Well so much for a short update :-) Thanks for checking in on us!
Hope, Love, Courage &Faith,