Sunday, November 1, 2009

Just a quick update about last week's tests.

Jonah's delayed emptying scan did not show any problems. This is both good and bad. Good for the obvious reasons but we also do not have answers regarding his poor appetite. I spoke with the GI doctor Friday and she of course suggested that we go ahead with the nasal tube to augment what he is already eating. I told her NO, that we first needed to try the medicinal route and trial the Periactin to see if it would increase his appetite. Good thing I have been doing my research and have other micropreemie moms to share notes! I first heard of Periactin from my good friend Amanda Lawrence whose son is also a 24 weeker. They have Duncan on Periactin right now and she has said it has helped some with his appetite issues. I guess this clinic does not generally use the Periactin on younger children but thank goodness I was able to use Duncan as an example and she said she was open to possibly trying the medication but wanted to discuss it with some of the other clinic doctors first. She is supposed to get back to me Tuesday.

For those of you fasting in church today, remember Jonah. We do not want to put him through any more discomfort and adding a nasal tube, even if only for a month or two, would be absolutely horrible for his progress. His speech therapist this past Monday absolutely had a melt down over the idea. She said it would aggravate his texture issues and further delay any speech progress. She was NOT a fan of the idea and I am not either. So please fast and pray that the doctors will agree to trial Jonah on the Periactin and that it will be successful in increasing his appetite.

The big issue is maintaining weight as well as gaining weight. He really has not lost any weight in two months but we need him to start gaining too.

I am praying the Periactin will be our next option.

Friday was a very frustrating day for me. First, with Jonah's fighting over eating as well as the phone call from the GI clinic. They did talk about an endoscopy to see if the fundoplication might be too tight but they said really there is not much to do aside from waiting for his stomach to grow and accomodate food so I do not see the point in putting him through the endoscopy if we can't actually do anything about the results. Although I guess Shane is right that it will at least provide answers.

Saturday I cleaned house in the morning, Noah went shopping with Shane for our church trunk o' treat and Grandpa took Jonah on a nice, long walk. Saturday afternoon we ran around doing errands, grabbing a few last things and then off we went to the local park to set up for the trunk o' treat. It turned out really well. One of Shane's vendors donated 200 pumpkins and the bowery ended up looking pretty festive with pumpkins everywhere and we were able to send them home with the church families after the pot luck which was nice. We had trunk o' treating after. Jonah was not in a good mood so Grandpa took he and Noah home for baths and Shane and I stayed behind and decorated our trunk for the church children. It was a lot of fun! We all enjoyed dressing up and even talked Grandpa in to wearing a Dr. Seuss hat.

Halloween is officially over and Christmas is around the corner (well, it is already here if you hit the stores). Now I guess it is time to get going for Thanksgiving. I think this year I am starting a holiday binder. I am inspired by one of our church sisters in our stake who is the most amazing, organized person you will ever meet. She had a holiday organization lesson for us and talked about ways to organize for the holidays. I am going to start collecting menus, recipes, fun activities and organizing them according to holiday. That way we can start deciding on family traditions and have menus planned for upcoming dinners, etc. This will be a new project to add to the pile but it is one I am excited about.

Thanks everyone for your extra support and prayers. Our little family appreciates all the love constantly sent our way.

1 comment:

Justine said...

My daughter is on Periactin every now and then. For about 2 weeks after starting the medicine it worked amazingly well! It did make her sleepy but she seemed ravenous during her awake time. She did gain some weight, but after a while it just wasn't working anymore. So now we just give it to her whenever she had a sluggish day the previous day to hopefully make up for some lost calories. This seems to work a little bit, she is gaining weight, although slowly. I really, REALLY hope it works for your little guy!