After two days of round trip, all day driving we have most of our specialists visit over for the boys. We still have neurosurgery next Wednesday for Jonah and then we will be done for a few months (although we do have the UCLA visit on the 29th of July). Talk about exhausting. It just continues to get harder as the boys get older. Noah absolutely cannot sit still to save his life. I swear he almost tore the GI Clinic office apart. He was pulling apart the sanitary paper on the patient table, trying to pull the scopes off the wall and attempting to dismantle the toy they had nailed securely (thank goodness) near the patient table. Of course when Mom says "No, you can't get down because this floor is not clean like home..." this results in screaming and protesting which includes a lot of back arching and every contortion imaginable to try and escape Mom.
Jonah had to get in the action too at the GI Clinic. He was talking as loudly as he could, at the top of his lungs and the doctor really got a kick out of it. She said more then once, "My oh my, you are the one I keep hearing...huh?"
Boy was Mom grateful for Grandpa today.
Good news first. Dr. Kelly (Jonah's eye specialist) yesterday mentioned that Jonah looked really great, both developmentally and physically from the last time she saw him (she was surprised at how much he had grown and happy about his progress with head control). She did not change anything with his eye glasses. Pulmonology did not have much to say for Noah other then he looked good, was gaining weight and still not off oxygen so let's try and see where he is at in two months. The specialist did reduce his diuretics to 1x day because his lungs sounded so clear today. The GI Clinic was ecstatic about the boys weight gain. Noah is 21 pounds, 30 1/4 inches and Jonah is 22 pounds and 31 inches. Not bad!!! I was so excited about Noah finally being at 21 pounds. I am shooting for 25 by their second birthday for both.
Now, the "other" news. Dr. Kelly did mention Jonah might be having issues with vertical palsy and that she wanted to see him in three months. She talked about maybe needing to order another MRI and that if he did show signs of vertical palsy she would need to, of course what else, do surgery.The GI Clinic did talk to us in length about the boys' continued issues with vomiting. By now, both should be improving and they are not. We did talk fundoplication today. I repeatedly mentioned that I would not allow for my boys to be given any type of feeding tube related to a fundoplication procedure. The specialist we spoke with said in the case of Jonah he is gaining weight and eating and would not need the feeding tube plus the fundoplication surgery they would do would merely tighten the esophagus enough to prevent constant vomiting. She said in cases of illness he could still vomit and could continue to eat. Because Noah's GED (gastric emptying delay) is SO severe she said it may be necessary to talk to a pediatric surgeon about a pyloroplasty. Pyloroplasty is a surgical procedure in which the pylorus valve at the lower portion of the stomach is cut and resutured, relaxing and widening its muscular opening (pyloric sphincter) into the duodenum (first part of the small intestine). She said it is very possible that Noah's problem may not be reflux but an issue with GED. So we are going to speak with the pediatric surgeons at the hospital and talk about options. I am NEVER a fan of surgery but our lives are being controlled in a horrible way by the amount of vomiting these boys do. It is so exhausting and we have fought and fought and even maxed out medications to try and stop things. I have lost sanity on several occassions (thank goodness for a supportive family, including my amazing husband) and I think we may be at the point where "discussing options" may not be out of the question.
So that is the latest here at the Hanna home.
We are finally back at home. The boys are asleep (I think we are finally reaching a sleep pattern with Noah! Hurrah!) and I am exhausted. I am glad tomorrow is Friday.