Two more months....

Yesterday we met with our GI doctor. The decision was made to use the NG tube for two more months and then we'll discuss the G tube. Daniel and I are ok with this decision. The G tube would be easier I think but it does mean ANOTHER surgery for Lila and since we just got done with one (for our bladder/kidney) it will be good to wait for a while. Lila is gaining weight and is 12 lb and 9 oz. The doctor was pleased with her weight and said that she is on the right track. On our way home from St. Louis we stopped in Mt. Vernon to eat at Cracker Barrel. We were so excited because it was Lila's first trip to Cracker Barrel! lol She did great and was soo good!! The picture above was taken at Cracker Barrel : ) doesn't she looked thrilled?!? LOL Well we are getting ready to go to church tonight so I'll blog later!!

Getting Stronger

Hello all!

It's been a little while since I posted. Lila is getting stronger each day!! Our therapist swears that Lila is a new kid! She is holding her head up and when on her tummy she pushes up with her arms and legs (!!!!)! Our OT says that Lila looks like she wants to crawl and doesn't think we'll have any problems if Lila keeps doing the things she doing! We have had our NG tube in for about a month and Lila does not seem to be eating better on her own. She still only takes about an ounce and half on her own each feeding. On Tuesday we have an appointment with our GI doctor in St. Louis to discuss a G tube. Hopefully he will hold off on surgery until after Oct 2nd (our wedding date). In other news, if you haven't heard about Inspiration through Art you should really check it out! Formally known as the Littlest Hero Project, this organization provides families of children with serious illnesses or disabilities a special photo session. I sent Lila's application in a while back and we recently got accepted! We have been in contact with our photographer and will have our special session soon!! We are so excited about this awesome experience!! Keep an eye on their website for Lila's story and picture! http://www.littlestheroesproject.org/ That's all for now! We'll keep ya posted!! God bless you all!!

Love,

Alyssa, Daniel, and Lila

There's no place like HOME!

We were discharged from Cardinal Glennon exactly a week ago. Lila has had some good days and bad. She seems to be tolerating the NG (nose feeding tube) fairly well. She LOVES to pull it out! She can be such a little stinker sometimes lol but she has been smiling more. We had a follow up with our pediatrician today to check our weight. Lila weighs 11 lbs 14 oz. She has gained a little more than 2 ounces since coming home. The doctor said that is just a little less than normal but that she should start picking up soon. She still won't eat much by mouth. I have to fight her to get anything in her little tummy. We feed Lila every 3 hours. The doctors told us to try to feed her by bottle for 30 min and after that whatever is left to put down her tube. Sometimes she eats all of the 100 cc (which is a little over 3 oz.) and sometimes we fight to get 5 cc in her by mouth. The doctors still don't know why she won't eat, although they say it is probably a neurological disorder.

Lila is laughing more and loves it when people sneeze! She thinks its the greatest thing ever. Within the past few weeks she has really turned into a mama's girl! She won't let me go anywhere or leave her with anyone other than Daniel. I don't mind though : ) we have a home nurse coming twice a week to check on us and see how the feeds are going. Daniel and I REALLY don't like her but we put up with her lol. Lila still has therapy twice a week. OT (occupational therapy) comes every Wednesday for 60 min. And DT (developmental therapy) comes every Thursday for 60 min.

Well Lila just woke up from her nap. Will blog more later!

Still in St.Louis

Chillin' in the bouncer

Hello friends,

We were told the other day that we would be going home today (Sunday) but now it looks like we may be here until midweek or later. We had a doctor come in this morning and agree with us that it would be easier to put a G tube in than go home with the NG tube. The G tube is a feeding tube that goes directly into the stomach and has a little "button" in which we feed her through. NG (nasal gastric) tube is a tube that goes through the nose, down the throat, and into the stomach. This tube is taped on the face and is a pain! LOL Lila hates it and has been crying nonstop since they put it in. She also likes to pull it out, which is really gross. We had a NG tube in Louisville since we were unable to feed her because A. she was on her stomach for 2 weeks after the myelo closure and B. because she didn't (and still doesn't) have a gag reflex. Lila fussed and cried when she had the NG tube then too. Daniel and I really don't want her to have any feeding tube but it is obvious that she needs one in order to gain weight and grow as she should. The NG tube works for a lot of kids but it's just not working for Lila. Hopefully the doctors will be able to talk tomorrow and figure out a plan. We have a surgery scheduled for Wednesday to take the stint out of her bladder, that was placed in when she had her kidney/bladder surgery. Lila has been gaining some weight and is taking some of her bottle by mouth. She LOVES her colorful rings and her new toys that Uncle Jack, Aunt Brenna, Gigi, and Great Grandpa delivered on Friday! We are really missing everyone at home and can't wait to get home! The nurses tell us that they can tell that we are definitely pro's at this hospital thing. LOL we brought our own sheets, blankets, and pillows with us! We also brought a cooler with water and brought a BIG bag of snacks. Oh, I almost forgot! Daniel wanted me to tell everyone to be careful when using hospital bathrooms.....you WILL get walked in on by cleaning ladies if you take to long! LOL it's been a long week but hopefully we'll be home soon! Thanks for all the prayers and as always, keep em' coming!

Love,

Alyssa, Daniel, and Lila