Wednesday, December 31, 2008

12/31 We are HOME

We are finally home from the hospital. It took a lot of me being very persistent and sometimes pretty grumpy, but we are home. We still have no diagnosis; they did send the SMA test off 2 days ago, so now we wait on that to come back. We asked that they hold off on any other testing for now. They poked and examined him so much yesterday that he had a horrible night and wasn't able to calm down and sleep. It was a miserable day for all of us and we were ready to get out of the hospital. Eli was not the same happy baby in that hospital that he was at home and I had had enough of seeing him like that. I don't know where we go from here, but he needed a break from doctors and nurses. He has the feeding tube in and we now able to feed him at home. Keep praying.

Tuesday, December 30, 2008

Update 12/30

We are still pretty much in the dark about things. Today should include a MRI scan, as well as placement of a feeding tube so he can get some nutrition. We are really pushing for him to go home soon. Most of the testing is complete; they will be drawing blood to do 2 more of the genetic tests this evening, leaving one more blood draw for tomorrow. We are hoping to do things on an outpatient basis rather than staying here in the hospital. They are not really able to do anything to treat him at this point, so once the feeding tube is put in we should be able to take him home. Please keep praying for us. We will have a long wait on our hands that will require a lot of support from our friends and family.

Monday, December 29, 2008

Update 12.29

We were given bad news today. The neurologist thinks Eli might have Spinal Muscular Atrophy. They are going to do genetic tests on him, which will take 4-6 weeks to get results back. I'm not even sure what to do or how to react at this point. Please keep us in your prayers.

Sunday, December 28, 2008

12/28 Update

Hi friends and family...

No cute pictures to post today. We are currently in Memorial Hermann Hospital with Eli. He had a bad episode last night and quit breathing for a few seconds on us. He was still having labored breathing, so we decided to bring him up here to the ER. We were admitted and finally got in a room around 6am. They have done some blood and urine tests, a chest x-ray, and an EKG, but haven't found anything conclusive yet. We are having the swallowing studying and upper GI in the morning, followed by neurology and genetic consultations. There are a few other issues they are looking at besides the feeding and breathing issues, including an asymmetrical chest and lack of movement (developmental delays). We are really hoping that we might get some answers out of all of this and figure out what is wrong with our little guy. It is Sunday and the hospital is running on a holiday staffing, so we aren't finding out much right now. I'll try to update things as we find them out; keep praying for us! We don't have cell phone chargers at the hospital, so if you need us, send me an email at and I can either send you the phone number for the room or email you back.

We love you....

Friday, December 26, 2008

Christmas Day

Breakfast! Homemade cinnamon rolls. Jason did a great job on these....they were YUMMY!
Eli in his Christmas jammies with his new toy from Aunt Crista
Eli and his stocking
Eli and his present from Santa
We had a nice Christmas day despite the fact that neither Jason nor I really got much sleep. Eli has had a few bad nights of not wanting to sleep so it has been rough on us. Crista was kind enough to come up today and watch him for a few hours so we could take a nap. We had a lot of Jason's family over on Christmas for dinner, as well as my good friends who made the best casseroles! I was so tired but had a great time. I did miss my family but they were in my thoughts.

Wednesday, December 24, 2008

Christmas Eve

Our family in our Christmas PJs
Eli loves his new monkey
Grandma and Papaw got him a puppy to chew on
Daddy was tired
Jason and I spent most of this day by ourselves with Eli. We made lots of yummy appetizers and snacked the evening away while opening our gifts from each other. Crista came up later that night and we opened presents again.

Monday, December 22, 2008

Today's Dr. Visit

We didn't really find out much today, but they did draw blood to repeat some tests, plus collected urine for another test that wasn't completed last time. We have to schedule a swallow study, as well as an upper GI, and will go to the pedi GI on Jan 27th. He had lost about 7 ounces from the last dr visit on the 10th, so backwards we go again... I really hope we figure out what's going on soon. Keep us in your prayers.

Happy Holidays everyone!

Sunday, December 21, 2008

New pics of Eli

Eli's ornament from his papaw
and his ornament from grandma

Looks like someone is bored with his rattle...

Our little man
We are still having feeding issues, so we will be going back to the doctor tomorrow. Jason and I have already made him an appt with a pediatric GI for Jan 27th, so I hope our normal dr can help us keep him healthy until then. He is so happy and smiling until we try to feed him, so I know something is wrong. We are on special formula and reflux meds, so I don't know what else to do at this point. We are hanging in there though.

Who needs to buy presents?

There was no need for me to buy the cats any presents this year..... They love the feather duster we have had for years and the boxes some of our gifts have been shipped in.... I dread cleaning up the living room and throwing out all the boxes; we will have some very unhappy animals on our hands!

Monday, December 15, 2008

Bears are Yummy!

Please keep us in your prayers. We take Eli to Hermann tomorrow to get the CF test done. We will be there at 8:30am, bright and early.
UPDATE: The test came out normal! Now we just have to figure out what else it could be. Just glad it's not that!

Wednesday, December 10, 2008

Can You Believe This is TEXAS??????

It is 32 degrees and snowing here tonight! It was in the high 70s yesterday. CRAZY weather!

We missed the last snow down here because we were in Kentucky. It sure seems weird to look out and see it, that's for sure. I don't know if we'll get very much, but just to see any is nuts!

Four Month Doctor Visit

Well, not good news at the doctor visit today. :( He is still not gaining weight like he should be. He was 12lbs 13oz today. His skin is very dry, definitely eczema, so we now have to get a prescription lotion for him. He is behind in development; the doctor was concerned because he doesn't try to roll over or grab at his toys. We have to take him sometime this month and get a sweat test done to rule out cystic fibrosis. We will also be adding a daily vitamin to see if that might help with some of his problems. Please keep us in your prayers as we continue to struggle with our cute little guy.

Monday, December 8, 2008

My Mamaw and Papaw

Everyone has that one person in their life, you know the one who holds a super special place in your heart. For me, that is my mamaw. She has had a very long life of 90+ years, but things are getting rough for her right now. My mamaw, well, she was my second mom. I spent so many nights with her when the men of the family would leave to go hunting. If I got in a fight with my mom, I immediately tried to go to Mamaw's. She was always finding little things to give me and my brother, from socks to candy to knick knacks we liked. I spent many hours of my young life playing in her jewelry box or listening to Don Williams on her 8-track player. Every year for my birthday she would call the radio station and request Eddie Rabbit's I Love a Rainy Night be played for me because she knew it was my favorite song.

One of my favorite memories was a tin can of buttons she had that I always loved playing with during my childhood. My mom found them last year and put some in a jar as one of my Christmas gifts. They are in my craft room and Eli will get to play with them when he is older. I know he will probably never get to meet her, but I will share all of my stories with him and let him feel like he knew her and my papaw. I also have a quilt that they were given on their 50th anniversary and I have been cuddling up with it to remember all those past good times I had with her. She gave it to me several years ago and I will treasure it always.

My papaw passed away not long after I got married, so I will always treasure those few wedding photos I have with him. He was never the best at saying I love you out loud, but I always knew I was very special to him. I can still picture him cleaning and sorting the ginseng he had dug up or working up the furs on the animals he had trapped. He would take me along on his school bus route when I was very young, then on his trips to the recycling centers to turn in his soda cans when I was older. I still cry when I see his favorite candy this time of year and I plan on finishing up the state quarter map I had given him as a gift and passing it on to my son.

I am very thankful to have Eli during this time of sadness. I hope my parents will come to mean as much to him as my grandparents meant to me. I love you, Mamaw, and I pray that you feel better soon.

Friday, December 5, 2008

New pics!

warm and toasty
our tree
Eli putting his ornament on the tree
Eli's first Thanksgiving
Cute in overalls, again