Monday, March 30, 2009

They're cute...that's all I wanted to say

Let's just look at some pictures from the weekend before I type anything...

My handsome men.
Jaxon Wallace
Brady Michael
Jaxon and Daddy watching basketball.
My loves. 
(Brady left, Jaxon right)
Great Grandma Carol with the boys.
Brady wants everyone to see his booty. 
(Yes, he's wearing his bib as a cape, and only a diaper...why not...)

Jaxon has a pretty bad runny nose which is making sleeping impossible. I had his oxygen on him overnight and he ripped it off so hard, the tape left an owey on his cheek. He's been up every 20 minutes after 2/3am for the past 2 nights. We're exhausted. Jason left this morning for a business trip through Wednesday night. I'm hoping Jaxon's cold doesn't get any worse while he's gone. Nana and Papa Letts are here to help tonight and then Rachel the rest of the days. I have our home-nurse stopping by to just do a quick listen to Jaxon's chest since he has the congestion. I just can't be too safe with him.

So Jax has his 2nd chiropractor appointment this afternoon...I'm really hoping it will help him sleep better again tonight...we could all use some sleep.
Also, we were able to get insurance to approve Brady's April RSV shot, so we're coordinating all of that. Major big thanks to Nurse Peggy from our ped's office for working so hard to get that. She's said they're waiting for the county report if there will be a MAY RSV shot. She said some years there is and some not...depends on how many cases there are reported in the past month to determine if it's still a threat. So we'll see if this is the last of it or not.

Thank you for all the support and well wishes for Jax. I'm still researching everything I can to see if something else clicks. I'm obviously not accepting that either of the upcoming tests are what's wrong with him (I die inside thinking of them). 

I keep thinking back to Friday's appointment and replay everything the doctors were saying or did. I realized that the awkward moments of silence with our primary specialist (who ordered the MRI) was observing Jax, and then made the decision for the MRI. I like to think that this doctor is still holding onto hope that this really is just a bad case of reflux that is lasting longer and is more severe than any patient he's seen. I hate the fact that the other specialist is quite certain Jax has some life-long disease. I just can't accept that yet. Wouldn't a disease involving the intestines have SOME symptoms in the stool?? Jaxon has never had issues with that - it's always been upper GI. I hate the fact that we were offered to have a social worker out to the house to help us cope with all this. Don't seal our fate yet.

Does anyone out there have any other suggestions? The two suggestions that I brought with me (EE and the allergies) were both acknowledged as possibilities, but it turns out that the way you treat both of those conditions is with Neocate...which is the formula Jax has been on for months.

It's odd. This whole time they've been saying "reflux", a part of me thought they weren't right. Now they're saying it may NOT be reflux, and in fact testing for other things. And I hate it...I want to go back to them patting me on the shoulder and insuring me "he'll grow out of it".

12 comments:

Lani said...

I'm so sorry that you guys are still dealing with this stuff. I'm always thinking of little Jax and hoping this all goes away for you VERY soon.
And you're right.. they sure are cute:)

Linda said...

The pics are SUPER cute!! Continued good thoughts and prayers for Jax and for strength (and sleep!) for you!

Angie said...

who does their hair? they are so so cute!!!! love marley

Laura said...

Girl it better be reflux because you and I can't both be suffering the exact same issues and have it be anything life-long other than reflux. Something with come through for you. It has to.
They are such sweet little men. I love how they pose for the camera all the time!

Amanda said...

Have they mentioned gastroparesis?

G & H said...

Your boys are truly the cutest!!!!!

Keith and Jamie said...

Hey...found your blog through the Multiples and More Blog. I was reading your story and know a Mom who also has Mono boys...http://patemiracles.blogspot.com/ You might want to check her out...super mom and Prayer Warrior. I will say prayers for your boys and that the docs find out what is causing Jax the tummy issues. May God reach out His hand and HEAL him!

Valerie said...

First of all I love the pics (and their hair)!

I'm so sorry that you've come this far with no answers. I pray the team at Children's can figure it all out. Poor little Jax. :(

((HUGS))

Chrissy said...

Your sons are always so cute and smiley! I know you don't know me--I've been following your blog since this summer from the Nest. I totally know what you are going through with feeding tubes and constant heaving/vomiting many multiple times per day. My son has the same symptoms and no one can give us any answers either, other than putting him through fundoplication surgery. Has anyone mentioned that surgery to you? Test-wise, has Jax had an impedance probe done? That will pretty conclusively tell if what is happening is reflux or not. It measures the ph in his esophagus for 24 hours and shows if the reflux is acid or base, and how often it happens, and if it correlates with anything else (position changes, coughing, wheezing, sleeping, etc.) It's not a terribly invasive test--there is a probe like an NG tube placed through the nose into the stomach. That might be one test to ask about.

EmpwrElliek said...

Hey i just came across your blog and started reading it. Im sorry to hear about little jax. I have a little Jax at home myself! I hope things look up soon, i think its great your staying positive. I was always told if you stay positive and look at the brighter end of things then good things happen:) I send good vibes your way! On the other hand YOUR BABIES ARE ADORABLE! Good job:) hope things look up soon:)

Kelly and Natalie said...

Hey there, it's hewinked. I can't believe how old your boys are! They are super cute. :)

ETS said...

I know you may have tried this, but I thought I would throw it out there anyway. Have you tried Elecare instead of Neocate. The GI we see for DD's severe allergies says that Elecare is more hypoallergenic than Neocate. DD had severe heaving before the Elecare, they thought it was pyloric stenosis, but she has severe allergies. I'll be praying for you guys!