We are off to a very busy start here in the Hanna house this week.
Today alone we had therapy, school and I volunteered for Little Feet Repeats. It was a long day to say the least.
This past Friday we heard from the GI clinic. The doctor that has been following the boys was concerned about Jonah. We discussed what has been going on and she decided we should repeat his gastric emptying delay study to see if he is still suffering from a lot of swelling due to the surgery and scar tissue removal in August. The doctor did say some kids take a few months to really heal from the procedure. She said if the swelling was significant she might recommend a nasal tube to augment his feeding until he is able to eat more adequately. PLEASE pray that we do not go down this road. I told the doctor this HAS to be the last choice. I talked to her about Periactin and she said that if the results show things are healing then the assumption will be that he needs medication to boost his appetite and we can try the Periactin. Even if the study finds swelling I may still ask to try the Periactin before the nasal tube. The doctor wanted to know why with Jonah's former results the surgeon did NOT do the pyloroplasty. I told her the surgeon's philosphy is the procedure is more harmful then helpful and he personally does not recommend nor like to perform the surgery. Apparently Jonah's GI doctor was not happy with this. What can I say? They both have varying opinions and we put trust in the surgeon's decision to not perform the pyloroplasty.
Right now, friends and family, we need your prayers! Please pray that we find answers that do not require any sort of feeding tube. We have not fought for two years to get to the point of giving up. It has been exhausting, I cannot lie, we are to the point of syringe feeding Jonah his sippy cup or supplementing with solids only and it can be so frustrating for both of us but I am not ready to put Jonah through any more than is necessary. So pray for both Jonah and I that we can make it through this and get answers quickly.
This week will continue to be busy with Little Feet Repeats, Halloween carnival, school, therapy, and a trunk o' treat for church plus the study in Madera Thursday. Phew. That was a long sentence to right and a bit stressful to think about but there will be a lot of fun too.
I will post photos of the Blind Babies harvest festival we went to Saturday. After all our driving, Jonah was in an awful mood so most of the photos are of Noah. It was a bit on the hot side (in the 80's) and being outside when it is hot is not Jonah's cup of tea.
I will keep everyone posted and let you know when we find out more about Jonah.