Once again we have decided to split up the blogging duties.  Kate is providing the medical update on Noah and Jeff is writting the "Thankful Things" list:

Things have been pretty quiet since my last update.  Saturday morning Noah woke up covered in a classic drug reaction rash.   The only new factor was the Duocal which had been added to his new formula recipe, so the doctor discontinued the Duocal and started Noah on some Benadryl which cleared the rash up quickly.   Unfortunately there are no dieticians up here on the weekends and none of the doctors were comfortable working up any kind of new recipe for Noah until Monday.    The GI doctor researched the Duocal and truly doesn't believe that Noah could be allergic to any of the ingredients.  We decided to retry the Duocal recipe today.   If Noah breaks out, then we know that he is reacting to something in the Duocal, and if he doesn't react then we know that it was some sort of fluke.  It took him about 18 hours to break out last time so we don't expect to see anything until tomorrow.   If he does react there are still some other options we can try for a low protein formula recipe.

The GI doctor has been wanting to do a complete upper GI on Noah and since Noah will be in at least until tomorrow (Monday) we are going to do the study then.   It could be scheduled outpatient but that would require another trip to Greenville.  This will be much more convenient for all of us.

Yesterday Noah started to have a LOT of trouble with the tissue around his g-tube placement.  If that tissue grows too much it has to be cut off before it is cauterized.   The policy here is to have a surgical nurse come over from the peds surgery office and treat any g-tube problems.  I was very concerned about waiting until Monday because the tissue was growing very rapidly.   Last night I spoke to a couple of the residents about my concerns and they offered to cauterize it themselves.  I was so relieved!   They spent a lot of time numbing the area and Noah didn't mind at all until the very end when they must have hit a spot that wasn't numb.  He was in a lot of pain last night and is still pretty tender today.   I have to move him carefully because any sort of bumping seems to hurt him.  My mom and stepdad and I did line a red wagon with pillows and prop him in there with his blanket for a little ride today.   He seemed to enjoy the change of pace enormously.  We looked at the huge fish tank here on the 5^th floor and went downstairs where there is a gorgeous tropical tank that he likes.  

It is a little hard watching Noah right now.  He just obviously doesn't feel good and we don't know why.   He had been looking a lot better once he got his g-tube, but he looks sick and frail now.  He is very pale and his eyes are red-rimmed with big dark circles below them.   He is very irritable which is totally unlike him.  I am hoping that it is just all the changes in his diet and that he will feel better when we get the right formula recipe worked out.   

Jeff and I both want to let all of you know that we read and appreciate every email that we receive and every comment left on the blog.   I can't read emails while I am here but Jeff is saving them all for me.  I do check the blog for comments a couple of times a day and love reading all of your encouraging notes.   Please understand that there is no way for us to respond to all of the emails, at least right now, but we do enjoy them and are tremendously blessed by them.   There are a couple of issues that have been brought up by multiple people, and I want to address them here quickly so that you all know that we aren't ignoring your suggestions!

First, we ARE looking into having some sort of mediport or central line placed for Noah.   We discussed it with our doctors and the plan right now is to have it done at Emory while he is already under general anesthesia for the biopsies.  We are hoping to maximize that anesthesia time and combine as many procedures as possible.   We will just hope and pray that he doesn't need to be hospitalized again before we go to Emory.

Second, many of you have emailed suggesting cystic fibrosis and/or celiac disease as possible diagnosis for Noah. We REALLY appreciate your suggestions, but want to let you all know that he does not have either on of these diseases.   He had a genetic screening for c.f. at birth and a sweat chloride test at 7 months old.  Both were completely normal.   Celiac disease is not responsible for what is happening either.  It is theoretically possible that he has celiac disease, but we have no reason to think that he does.   People with celiac disease are symptomatic in response to gluten in their diets.  There is absolutely no gluten in Noah's diet and there never has been.   Gluten does not pass through breast milk, so there is no possible way for him to be reacting to gluten. Also, celiac disease would not explain his non-GI issues like his inability to correctly regulate his temperature and breathing, his acid/base imbalances in his blood and urine, etc.   Again, it is theoretically possible that Noah could show signs of celiac at some future point when he gets gluten in his diet, (just like any baby could end up with celiac disease)  but it isn't an issue now.   We want to say thank you to all of you who have been so thoughtful to send us these ideas and we want to be certain that no one thinks that their suggestions are being ignored!   Every time someone sends us an idea that we haven't tried or looked in to, we do research it and run it by the doctors if it seems like a possibility.   We just can't email each of you to let you know!

While it is unfortunate that Noah had to go back to the hospital this week, we still have SOOO much to be grateful for.  Here are a few...

1.  Jeff's sister, bro-in-law and their two adorable sons came down for a visit this week and will be here until next weekend.  Our children have been having a blast with their cousins and it is always good to see family that lives so far away.

2.  The van is fixed - sort of....  My friend, Bobby and I put all the parts back together into the engine (only a few left over bolts and screws - not bad, eh?!), added water to the radiator, changed the oil, and fired her up.  It was an exhilarating moment!  I felt like Dr. Frankenstein standing over his creation shouting, "It's Alive!  It's Alive!  (Lightning Flash!) My Creation LIVES!!  BWAHAHAHAHA!"  (Thunder rumbles...)  After having my "Boris Karlof" moment, I took it for a test drive around town.  Nothing leaked, ruptured, popped or exploded, so I felt like it was a job well done.  Then I loaded the kids into the van to take them to see Kate and Noah.  The engine temperature was fine for about 75% of the trip, but after returning home (a 110 mile round trip!)  the radiator was shooting steam out from under the hood as we limped back into the driveway.  I cooked out most of the water in the engine and we are still not sure how.  I suspect the Head Gaskets are shot, and we are hoping the the Head Covers themselves are not cracked.  I will have a professional check it out tomorrow and tell me what's going on.  However, I am still thankful for Bobby helping me with the engine.  I learned a ton of stuff, like how to change a waterpump, use different tools, flush a radiator and most importantly, I learned that professional automotive technicians are UNDERPAID!!

3.  We are thankful for friends like Jim Erskine who organized a fund raiser for us (as many of you know).  There are still several days left and we already have money to cover the expenses on the van as well as many of the medical expenses we have had so far with Noah.  Kate and I have been blown away by the generosity of those that participated.  Words fail to describe our gratitude.

Final thought for the day...

As we left the church building to walk to our van, I asked our 4 year-old daughter, Sarah, to put on her sunglasses.  The following conversation ensued...

Jeff:  You need to wear your glasses to protect your eyes from the bright sun.  Besides, they make you look cute.

Sarah:  Yup, plus they make me look like a super hero!

Jeff:  Oh really?!  What are your special powers, besides being super cute?

Sarah:  I'm soup proof!

Jeff:  SOUP proof?!?!  Did you just say "Soup"??

Sarah:  Yup, when I see soup I just "psshhhh" (thrusts tiny hand straight out with an open palm)

Jeff:  I see!  How very special it must be to have such a power.  I bet Batman would give his eye teeth to have that kind of power in case he ever saw a bank robber holding up a bank using a can of Campbell's Tomato Soup.

Sarah:  Yup, PLUS I'm cute!

Just another day in the life......