Update

Dear Friends:

It has been a busy week but thankfully, our niece Sarah was here to help.  The week started off with preschool orientation on Monday and the first day of school on Tuesday.  Both boys have great teachers and enjoy their classes immensely! 

We only had one dr. appointment this week and that was the post op appointment with the surgeon for Emory.  His chest xray looked good.  It still showed a little bit of fluid which they said should go away in time.  The nurses and dr. were both pleased with how well the incisions have healed and said he looked really good.  He had not lost or gained any weight, which was a little disappointing to us that he had not gained weight.  The surgeon told us not to expect much weight gain until a month after surgery.  When Emory came home from the hospital, he was on a regimen of taking 9 medicines.  After our GI follow up appointment, we eliminated one of those medicines.  After the follow up appointment with the surgeon, he eliminated 2 of those medicines.  So, now Emory takes 4 medicines on a regular basis throughout the day in addition to 2 medicines that are to be given on an "as needed" basis. 

Overall, Emory is doing well.  He is still taking all of his feeds through the ng tube.  We turn off the feeding for an hour at a time twice a day.  He also still throws up once or twice a day.  Although it isn't nearly as bad as it was, we are still trying to work towards him eating from the bottle and not throwing up.  The surgeon suggested that in order for him to gain weight for us to increase his feeds from 30 ml an hour to 32 ml an hour.  But, when we did that, he seemed to throw up more.  So, we are back down to 30 ml an hour.  People keep telling me how common all of this is with cardiac and digeorge babies, but it's still challenging and hard to get used to.  But, that is our biggest goal for him for right now....to eat from the bottle and keep it down.

Most babies have their second round of shots at 4 months of age; however, Emory will wait and have his at 5 months of age due to us needing to wait till 6-8 weeks after surgery.  He also will start his rounds of rsv vaccinations in October and they will come to our house and administer those so that we don't sit around all the germs in the pediatricians office.  This is something that the pediatrician set up for us....thanks Dr. Barnwell!  Our next appointment is next week when we follow up with the cardiologist on Friday.

Emmitt and Eli are doing well.  They are soooo full of energy these days.  We keep trying to stop them from running up and down the halls and from being so loud.....they are 200% boy!  Emmitt is a big helper and Eli just repeats everything Emmitt does and says.  Everything is a competition with them.  Our niece Sarah came in last Saturday and her mom, Aunt Dawn, came in Wednesday night to get her.  They both left this morning to go back to FL.  But, the boys LOVED having them both here.  Today was our first day in a very long time when it has been just us here at the house without any visitors or family members.  We have just stayed in and done stuff around the house, played, watched some tv, etc.  It's time for us to get into a more structured routine and hopefully we won't have too much drama with Emory for a little while. 

That's the update for the kids.....everything is about the same for Claude and I.  I kind of stay in a state of being tired, but my mom so kindly informed me years ago that it would be that way for at least the next 18 years.  Claude is coaching football and subbing at Landmark.  Although it's not ideal and doesn't make sense, at least it is bringing in some income.  Please continue to pray for him to find full time permanent employment.  We see that God has us here for a reason and are not sure what exactly that is.  But, we also need that secured employment.

Hope everyone has a good weekend.......be blessed!

Twila