Dear Family and Friends:
I trust all of you are enjoying your summer so far. Although we won't be taking any big vacations this year, we are enjoying our time as a family doing this and that. Claude is working part time with the football team at Landmark in the mornings and job hunting in the afternoons and evenings, so his schedule is very flexible which allows him time to go to dr. appointments or any other family things. This past Saturday, we went to the Ocoee and the boys played in the water and on the rocks while we watched all of the boats come down the rapids. We all had a good time and were able to see some friends in Chattanooga on our way home as well. It was great to catch up with the Jennings and for us to get away and have a change of scenery....boy was that needed! Once we get some computer issues settled, Claude will get some pictures up.
Gremmy and Papa came to see us last Friday. They were flying through Atlanta and were able to get their flight changed so that they could have a long layover. Claude went to the airport to get them and they were able to spend about 5 hours with the boys. We had brunch, Emmitt and Eli had a blast playing with Gremmy, both boys enjoyed riding their cars outside and showing off for Papa, and Gremmy enjoyed feeding Emory. However, she did get to see how challenging it is to feed him lately. He really goes to the extreme with his eating in that he either falls asleep and is too tired to eat or it all comes back up due to his reflux. With his heart condition, he just gets so worn out so quickly when it comes to eating. And, the reflux may or may not be due to something regarding the DiGeorge Syndrome. We really don't know.
Overall, Emory is doing about the same. My days, nights, and weeks tend to run together these days. Emory usually starts a fussy routine about 7:00 in the evening and it varies as to how long it lasts, etc. This is when he just wants to be held and looked at all night long. But, that's also when mommy is finishing dinner, doing dishes, bathing two other kids, etc. All you mommies know what I mean! The biggest thing we are dealing with right now is Emory's reflux. My pediatrician told me how common it was in newborns but I really thought he was just saying that until I talked to another mom that we met in the NICU and she said her boys were going through the same thing. So, I just determined to try and watch every little thing regarding what we do around the time he eats, the position he is in when he eats, how often we burp him, etc. to see if that helps. We also were going to start using the "ready to feed" formula rather than the powder formula. However, today may have helped change all that.
I took all 3 boys to the dr. today. Emmitt and Eli have had this lingering cough, but I mainly went for several other reasons. When Emory had his calcium checked last time, they called and said that they didn't have enough blood to run the test and we needed to go have blood drawn again. Since that office is next to the pediatrician's office, we just lumped it all into one day. They got enough blood today and then we went to see the pediatrician. While we were in the waiting room, I finished feeding Emory and he spit it all back up. Two hours later while we were in the middle of our visit with the dr., I fed him a little bit and he spit it all back up again. The dr. was shocked at how much he spit up and how he spit it up. He was even more shocked that this was a normal routine for me. I carry several burp rags and a nose sucker with me at all times because of how normal this has become for us. However, the dr. didn't realize it was so bad and he ordered an Upper GI which we will have done tomorrow (Tuesday) morning at Fayette Piedmont. I'm thankful to all of our friends who have helped take care of Emmitt and Eli, but I know they are so excited to go to Mrs. Susan's house tomorrow to play while Emory has his test done.
As for the rest of the dr. visit, we all have horrible chest colds, Eli has an ear infection, and I have pink eye in both eyes. But, I'm sure after antibiotics, we'll all be good to go by tomorrow afternoon!
Two things that I'm just now catching on to.......(forgive me if I'm repeating myself)
1.) We will see the cardiologist again July 2nd. They will take all of Emory's vitals, weigh him, do an EKG and an Echocardiogram. Every time we see the cardiologist, they will do this same routine. And, we will see him every 2-3 weeks until surgery time. I guess that if something changes and they see the need to do surgery before he is 6 months of age, they will.
2.) Our next big visit to doctors will be on July 7th. We will see the only group of doctors in this region that deal with DiGeorge Syndrome. They are all at Emory University Hospital - which is linked with CHOA/Eggleston (Children's Healthcare of Atlanta). On that day, we will see 5 different doctors which will include gastro, genetics, allergist, endocrinologist, and one other I can't remember. I'm so thankful they are all together but my goodness what a long day that will be! They will help us understand more about the DiGeorge Syndrome and its lifelong effects on Emory and his development.
So, that is where we are at today. Please keep us in your prayers especially that we can figure out why Emory is spitting up so much. He had only gained 5 ounces in 10 days and they are wanting him to gain more than that so he can be as big as possible for surgery.
We sure do appreciate all the cards, emails, phone calls, meals, babysitting, gift cards, etc. that everyone has given. Nothing goes unnoticed! May you all have a blessed week and we'll post when we get results from tomorrow's test.
Claude and Twila