Monday, December 14, 2009

I wish I had good news to share today.

We headed down to Fresno for three separate clinics at the hospital. First, we hit GI Clinic for both boys. This was probably our worst visit. For the first time EVER, Jonah weighs less then his brother. This is NOT good. We have been battling his horrible appetite ever since his fundoplication surgery in August. We started Periactin back in October in hopes it would boost his appetite but I am sad to say it has only helped marginally. I thought perhaps he had just hit a plateau but imagine my shock when they weighed him only to discover he had LOST weight and was thinner then Noah. It does not help that he has over an inch in height on Noah. This makes him look even more skinny. Noah did gain a bit of weight/height in the past couple of months. He is still small but because he is moving forward they are not yet worried about his progress. The first suggestion for Jonah was, "well...what about a g-tube?" Well, guess what. Have we NOT had this discussion before? I swear I feel that I am constantly repeating myself with the same doctors who see us every few months. G-tube is the LAST option, absolutely the last option. Jonah has had four abdominal surgeries and pursuing an additional surgery is not something I take lightly. Also, I do not want to take any possible developmental progress from Jonah and adding a G-tube will not help his possible ability to feed himself some day. Yes, there is a possibility we can pursue night feedings and still possibly maintain feeding during the day but I have a sinking feeling that if we pursue this option Jonah will have it for life and it will affect his ability to eat independently.

So, after discussing options the doctor agreed to pursue a couple of tests to see if the problem is related to his fundo. First, we will do an upper GI study to see if any hernias have developed due to the procedure. If nothing is found that could be causing issues we will then do an endoscopy to see if the fundo is correctly positioned. If this also shows nothing and in three months Jonah has not gained weight....they will start the discussion of G-tube.

I can definitely say I am stressed out. We have three months to get weight on Jonah. The GI doc did give us two cans of DuoCal and asked that we start adding a few scoops to everything he eats (Noah too). She said the DuoCal should be more easily digested then the Benecalorie that Noah was on for such a long time. I hope that both boys will tolerate the DuoCal and that it will help both gain weight. Also, for the first and only time, I hope that something will be found with these tests that can give us a definitive reason as to why Jonah has suddenly lost his appetite. There is no real reason for his weight loss other then something related to his fundo surgery from August.

After GI we went to see the surgeon who did Jonah's fundo and he basically agreed with GI and even made the frustrating comment that he really did not understand what was going on with Jonah. He said that loss of appetite is not a common risk of a fundoplication and he certainly does not understand why this has become an issue for Jonah.

Please, pray for Jonah. Pray for all of us. We really need these next three months to make the difference. We are trying so hard and have fought so much and given so much time and effort toward preventing him from ending up with a feeding tube.

Jonah also saw his eye specialist. Everything is fine from his November surgery. His specialist felt that his eyes showed improvement and was pleased with how well he seems to be using both eyes since the procedure.

After, we delivered hygiene kits that our church ward Relief Society assembled to the Bishop's Storehouse in Fresno to be distributed to those in need. We finally got on the road toward home a bit after 1:00 pm.

It was definitely a long day. Noah has much less tolerance for these visits. He does not handle having to be in one place without roaming around freely well AT ALL. In fact, I think the GI doc's comment about Noah's behavior today was, "Well...he certainly is wild isn't he?" Yeah, he is. He is a typical, high energy, in to everything two year old and spends only a few seconds on any one given thing.

So I am glad to be home. I am going to bed and then we will start the process again tomorrow. Oh! We also got Jonah transitioned to a big boy bed. He is now officially downstairs in his own room with his own set of big boy furniture. We set up the side rail tonight and washed his quilt and sheets. Tomorrow will be his first night in his own room. Such a big step! Eventually in the coming months we will transition Noah too. Right now, he would be much too big of a trouble maker to take him out of his crib.

That is the latest in the Hanna home. We hope you are enjoying the Christmas season. We love Christmas here in our home.

God bless everyone. Please keep our family in your prayers.


Jill said...

I will keep you in my prayers.

wilkinson_fam said...

Oh Michelle. We will pray for sweet Jonah. Life is stressful enough without having to force food down your babies throats! Bless your heart.

BTW - I saw a sign on the freeway the other day that reminded me of you. "Don't [dis]ability." So true. Even those with more limited skill sets have SO much to contribute.

Love you, girl.