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

No apnea!

We got some good news this afternoon! Lila does NOT have apnea like the doctors believed. We have had problems with her holding her breath until she about passes out. She turns blue and this always happens when she gets extremely angry. At first I though these were seizures, so we had an EEG and she actually did one of these "episodes" during it. But it didn't show up on the EEG as a seizure. We did a sleep study and that came back fine, showing that she had normal breathing patterns during sleep.It turns out that her chiari malformation is to blame for this. Apparently in kids with chiari they sometimes don't have the sensation that they need to take a breath when they hold their breath. This makes them experts at holding their breath but can scare the pants off their parents! Which is exactly what is happening to us! The pulmonary doctor said that Lila should be fine and that it doesn't look like we need to do the decompression surgery anytime soon because her breathing appears to be normal. He explained that in kids and adults without chiari, when we hold our breath CO2 builds up and causes us to have an urge to take a breath. In kids with chiari they sometimes don't get that sensation. Anyway I thought this was interesting and wanted to share our good news! The neurosurgeon agrees that we don't need to have the decompression surgery yet.We are still in the hospital and they are stilling trying to figure out her eating problem but it looks like we might be going home soon with a NG tube. Thanks for your prayers and please keep em' coming!

EEG and Sleep Study Pictures

Sleep Study

Wired.
Gettin' the wires on for the EEG.
This is during our 24 hour EEG.

Back to the Hospital

Dear Friends,

We find ourselves in the hospital again. A few weeks ago we noticed that Lila stopped eating as much and just didn't seem hungry. As the days went on she took less and less and fought every time we tried to feed her. So we made an appointment with our regular doctor. He added up how much Lila was taking and determined that it wasn't enough. That appointment was on Wednesday July 21st. On Thursday we got a call from the doctors office. The doctor had decided that we needed to go to Cardinal Glennon for some observation. We packed up, took off work, and headed to the hospital on Friday. When we got there they took blood, got a urine sample, got an IV in (it took 6 tries and finally had to put it in her scalp, but is significantly better than the 14 tries it took in Fairfield) and got a CT scan and x ray of her shunt. Her shunt seems to be in working order, which is a prayer answered. Blood tests came back good as did the urine sample. On Saturday we had a 24 hour EEG to determine if she was having an seizure (we are still waiting for the full results of that test). On Sunday we had a kidney ultrasound to make sure that her kidney's were working and healing from her last surgery ( she had surgery 6/30/10 to remove an obstruction). On Monday night we had a sleep study. The results from that won't be back for a few days. And this morning we had a MRI. To say the least our stress rate has been through the roof! LOL. Daniel went back home last night so that he could be to work today. So Lila and I are up here alone. We try to sleep whenever we can but it's hard with all the doctors and nurses coming in all the time. So far the doctors are stumped as to why she won't eat. She acts normal until you try to feed her. When you try to put the bottle in her mouth she pulls it away and shakes her head and fusses. It's very confusing. I hope that we can find some answers soon. The doctors are trying all the can and we are trying not to get a feeding tube but it looks like we are headed that way. Please keep us in your prayers. I will post some pictures that I have and update again later.
Love,
Alyssa, Daniel, and Lila