AMAZING NEWS!

On Monday we had a follow up renal ultrasound at Cardinal Glennon. The last renal ultrasound that Lila had showed severe dilation of the kidneys and bladder. The doctor put us on Ditropan three times a day and increased our cathing from 2x a day to 5x a day. The UTI's that we had been experiencing went away and Lila has been feeling great! Well on Monday we got some AMAZING news!! The latest renal ultrasound showed MAJOR improvement! Lila's kindeys and bladder and 10x better! The doctor was amazed at her progress and even canceled the following ultrasounds that were scheduled for the next two months! He said that she looks like a new kid!! We had been praying for good results and we definitely got them! Praise GOD!

Also Lila may have said her first word but it's not confirmed yet lol. Both Daniel and I have thought we've heard her say mom but she likes to say it very quietly so we can't be sure! She has been much more vocal these past few weeks and I love it : ) Thank you for all your prayers!!

More later!

Lila's 1st Birthday!

Lila had her first birthday last Saturday!!! I can't believe my little sweet pea is 1! We had a small family party at my mom's house and had a blast. All of our family was there and it was great! My mom made Lila a beautiful cake! Lila wasn't into the cake to much but she was in a GREAT mood! The above picture is by far my favorite (even though i look awful)! Happy 1st bday Lila!!!!

Thanks for following! More later!

Overdue update

Hello Friends,

Everything is going pretty good at the Hopper house. Daniel is getting ready to go away to school to complete the first part of the police academy. I am working as a part time aide at Allendale school, in the kindergarten and pre-k classes. Lila is getting stronger : ) although she is not gaining weight very well (due to ng tube issues) she is playing more and making some new sounds! "MMMMMMMMMMMM" and "AAAAAAAAAAAAH" is Lila's new favorite sounds! I am hoping that she will put them together to say mama soon! At the end of this month we are scheduled to see the GI and will be scheduling a G tube surgery. We went to the urologist for a check up and to talk to him about Lila's UTI problems. They ran some tests on Lila's bladder and kidney's since it had been a while since it had been done. The results were pretty discouraging. We have to cath 5x a day due to Lila's bladder having to much pressure and pushing urine back into her kidney's. The doctor also put her on ditrapan to help relieve some pressure. So we started her on a higher dose of the ditrapan and of course Lila had a bad reaction to it so we had to lower the dose quite a bit. Hopefully the increase in cathing and the ditrapan will work and Lila won't have to have surgery on her bladder to decrease pressure. This week there has been a lot of talk about spina bifida in the news!!!! The Today show had a segment on the MOMS study and I was so excited!!! It's so great to have spina bifida being put out there for the public to hear about!!!

So the other day it hit me....Lila is going to turn 1 on the 26th of this month! WOW! What a year! I can't believe my baby is going to be one! Lila has been through so much in her first year and I'm so proud of how well she is doing! She is such a little fighter!!!!!

I'll blog more after Valentines day and Lila's birthday and post some pictures of the birthday girl!!

Love,

Alyssa, Daniel, and Lila

UTI!!!!!!

Dearest Friends,

It has been a crazy since our last post!! Lila has had one UTI after another. She is now on her 4th UTI . Next week Lila has an appointment with her Urologist, so hopefully he'll be able to help us get rid of these UTI's. Since the neurologist took her off her pheno and put her on keppra, Lila has been like a new baby! She plays more and smiles. She seems to be out of her fog. We're still working on rolling over more and sitting on her own. Daniel and I have discovered that Lila's favorite treat is candy canes : ) the kid goes nuts for them! Also a few days before Christmas we discovered that Miss. Lila had her first teeth!!! Not just one but three beautiful, crooked, white teeth! Lila is also gaining weight really well. She's well over 16 pounds now and is getting longer and longer! And you wouldn't believe how long her hair is now : ). I think we are FINALLY going to be able to get some professional pics done of Lila this weekend! I'm super excited about it! Hopefully she'll flash those pretty teeth in some of them : ). Keep the 26th of February open because Lila is having a 1 year celebration!! That's right our little Lila Grace will be 1 year old!! I can't believe it! We are going to have a blast! Details soon to follow on time and such.

We've had a lot of changes happening in the past few weeks but Lila has been adjusting well. Daniel has been working more at the jail and goes in to work at 3 p.m. I've been working at some of the local schools as a sub aide in some of the classrooms, so I don't get home until after 3:30. One of the grandma's usually watch Lila when Daniel goes to work until I get home. It's been pretty hectic but God is taking good care of us and definitely blessing us! That's all for now. Thanks for following!

Love,

Alyssa, Daniel, and Lila

Thanksgiving and Shunt scare

Dear Friends,

Above are a few pictures from Lila's first Thanksgiving!! No, it's not just you, Daniel DOES have bruises on his face in these pics!! He did a cage fight a week before Thanksgiving and still had the marks on him but I was determined to get a family picture! Anyway Thanksgiving was pretty good but we were all worried about Miss. Lila. Early that morning, around 3:00 a.m., I woke to Lila screaming. When I picked her up out of her bed I noticed that she was rigid and her right side was convulsing. I quickly laid her on our bed next to Daniel and woke him. We laid Lila on her side and tried to get her to respond. Her left side started convulsing too and she was blinking her eyes rapidly. She was obviously having a seizure. I called my mom and grabbed the camcorder and recorded it. The seizure had been going on for about 10 min, so we decided to take her to the hospital. As soon as we got her in the car the seizure finally stopped. She was responding to us and breathing fine so we decided not to take her to our crazy little hospital. I fed her a bottle, cathed her, and she fell asleep. I watched her the rest of the night and finally went to bed myself at six. Now we had been battling a double ear infection for a month and she had a UTI a two weeks before Thanksgiving. Her urine had been cloudy but the follow up urine sample from our local hospital had come back negative.

Lila started throwing up later on Thursday night. Daniel and I were scared that it was her shunt since she was vomiting and had a seizure. She was also running a little temp. On Monday( the doctor had been closed since Thanksgiving) Daniel and I decided to take Lila to Kosair Children's Hospital in Louisville to get her shunt checked out. When we got there the Neurosurgeon was waiting for us ( I had called ahead and told them we were coming). They quickly took Lila back for a CT scan and did an X-ray to check her shunt. Within 20 min the doctor came back to the ER where we were and told us her shunt looked great!!! We were so relieved!!!! They did a urine sample and it came back that she had a RAGING UTI. So long story short we were admitted from Monday to Friday. We had the same issue with Lila being resistant but the doctors were great and figured out a med that she could take. They also did an EEG. It came back normal but the Neurologist told us that Lila probably has an underlying seizure disorder and when she gets sick her seizure threshold is lowered which makes her more vulnerable to having seizures. The doctor switched her Pheno to Keppra and she also checked Lila's blood levels to see how much pheno she had in her blood. The doctor decided to put her on a higher dose of meds. They told us they have a Neurologist that comes to Evansville, IN once a month and accepts Illinois Medicaid!!! Yay!! So they will follow up with her there! We are so excited! In the future we will have to watch her closely when she gets sick. And no baths by herself when she gets older, we will also have to watch her closely when swimming.

Overall the hospital stay was not to bad and we got some great answers!!! Finally!!! We LOVE Kosair! I'm def not taking her back to Cardinal Glennon. Lila is feeling better and has learned how to kiss : ) she puckers her little lips and leans her face up to kiss her uncle and aunts : ). That's all for now! Blog more later!

Love,

Alyssa, Daniel, and Lila

Ear infection

Lila's 1st Halloween
Not a happy "Trick-Or_Treater"
She didn't like her costume....

Hello Friends,

It's been extremely busy at the Hopper house. Miss. Lila has had ear trouble. It started out with one ear being infected and quickly turned into a double ear infection. We've been dealing with a very unhappy baby for about three weeks now : ( we've tried multiple medicines but we're having a hard time finding one that works for her. Lila had a doctor appointment this morning to recheck her ears and she weighed in at 14 lbs. 13 oz. She is gaining weight well even though she feels terrible : ( the doctor says that if her ears don't get better we may have to put tubes in her ears. Lila's therapist are happy with her progress. The other day we had a first......Lila actually beared weight on her legs!!! I cried tears of joy when I saw my baby stand on her feet. Even though it was only for a few seconds it was the best : ). We also had another first! Lila celebrated her 1st Halloween! She was a banana and she really hated it lol. We didn't stay out long because of her little ears and we put a hat on her. Check out the pics! Thanks for following we'll blog more later!

Love,

Alyssa, Daniel, and Lila

Busy Busy

Hello Friends,

It's been a while since I've last posted! We've been so busy here at the Hopper house! Daniel and I got married on Oct. 2nd! It was a great day and we had so much fun! Lila is getting bigger and bigger. She had a doctors appointment today and she weighed in at 13 pounds 8 oz. Lila is 24 3/4 inches long! She is still trying hard to sit up on her own but hasn't got the hang of it quite yet. Her new favorite thing to do is to blow raspberry's : ) the doctor is happy with her weight gain and bumped up her feedings from 100 cc every 3 hours to 110 cc every 3 hours. We still mix the formula different to get her extra calories. We mix 3 scoops of formula to 5 oz of water. The therapists have still been coming once a week and now we have a speech therapist coming to work with Lila on her feedings. Lila is still only taking about an ounce by mouth. We go back to St. Louis for our SB clinic in November and we will be talking to the GI doctor about getting a G tube. Lila will also see her Orthopedic surgeon to check on her clubbed foot and her urologist. The pulmonary doctor will also check on her while we are there. I am so excited because it is spina bifida awareness month!!! On Oct. 17 we will be in Mt. Vernon to get Miss. Lila's Littlest Hero's pictures!! Daniel and I are so pumped!! What a perfect month to get these pictures done!!! I will post them when we get them!! Thanks for following!!

Love,

Alyssa, Daniel, and Lila