So Big!

Our little Lila is getting SO BIG! She is doing great! Lately she has been really enjoying playing at Nana's house with her Aunt Brenna, Aunt Beth, and Uncle Jack. She is also getting herself into some tight spots (literally). Last Sunday (our 1 year anniversary!!) my sister and I took a trip to Wal-Mart and left Lila at home with Daniel. As I'm walking down the dairy aisle my phone rings and when I answer I hear Lila screaming in the background. I also hear Daniel yelling frantically but I can't make out what he is saying. When I finally get him to stop yelling so I can understand he tells me that Lila's head is stuck in the high chair and he can't get it out. Actually this is what he said "Lila's head is stuck in highchair! YOU NEED TO COME HOME NOW!" So as I'm about to tell him to get some butter and grease her head (the only thing I could think of at the time lol) he exclaims that he got her unstuck. I'm still at a loss of how her head could get stuck. Apparently it was stuck through the side of the chair and her nose was stuck under the button that folds the chair up. Other than that our day was pretty great! Our church had a family fun day and we had chowder, carved a pumpkin, and went on a hay ride! It was a great day. The next night Daniel took me out to dinner and we went to see The Help which I've really been wanting to see. That's all for now!

Love,

Alyssa, Daniel, and Lila

Spina Bifida Awareness Month!

Since October is Spina Bifida Awareness Month I thought I would provide some information about Spina Bifida for those who are not familiar with SB.

Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States. Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Myelomeningocele

Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."

In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.

Neurological impairment is common, including:

• Muscle weakness, sometimes involving paralysis
• Bowel and bladder problems
• Seizures, especially if the child requires a shunt
• Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)

I am so proud of my little SB miracle! She is such a blessing to me and Daniel!

1992 Childhood Symptoms

While at work today switching books and movies out of our parent library, I came across a book titled Childhood Symptoms Every Parents Guide to Childhood Illnesses revised edition. Curious, I thumbed through the book and found spina bifida as one of the topics. I quickly looked at the date the book was published and saw 1992. 1992 wasn't that long ago....so I opened the book back to spina bifida and began to read. This is what I found.....

"Spina Bifida- a congenital condition in which the bony casting around the spinal cord does not develop properly, permitting the spinal cord and meninges to be exposed. This serious hereditary developmental abnormality occurs during the embryo's first weeks of life in the womb, when the creation of the protective tube around the forming spinal cord does not close completely. After birth, it can be associated with paralysis, deformities, and hydrocephalus (commonly known as water on the brain).

Spina bifida occulta is a milder form of the condition in which the neural tube around the spinal cord is not completely fused, but there are no problems or symptoms, and it may go undetected for years. It requires no treatment.

However, there are two other, graver types of spina bifida- meningocele, in which the membranes that cover the spinal cord protrude through to the surface of the back, and meningomyelocele, in which both those membranes and parts of the spinal cord and nerve roots are visible. Some spina bifida babies with severe meningocele or meningomyelocele have brief lives counted in mere hours, while those who do survive longer commonly have mental retardation and limited motor and muscle-control skills.

Action- Surgery can aid in relieving many of the possible complications. Parents should seek genetic counseling, for the risk of having another child with the same defect is greater than that in the general population. Amniocentesis can pick up signs of spina bifida. Professional help should also be sought to aid the parents and any siblings in coping with the familywide problems associated with this condition."

Holy cow. It really surprises me that this is the information that they had on spina bifida as late as 1992. And then again it doesn't surprise me. When we were given Lila's diagnosis we were told that her lesion was so large that she would probably never walk and would essentially be a vegetable. Terminating would be "understandable" in our case.It breaks my heart to think of all the children that were never given the chance at life because of a diagnosis. Also it infuriates me that "vegetable" would be used at all to describe these children. AAH! I promptly took the book out of the rotation (other info was outdated as well).

I am thankful that medical technology has improved and reading this today made me realize how blessed that Lila was born in 2010 with all this new information. Hopefully one day soon doctors will have even more information on spina bifida and deliver the diagnosis in a better way.

Talking up a storm

Miss. Lila has begun talking up a storm. I have been waiting patiently (or not so patiently) for while for her to pick up on new words. She's been able to say mama for awhile but a couple weeks ago she said dada for the first time. Of course she decided to say it REALLY loud during the silent prayer at church on 9/11 but hey she said it!! Daniel is beyond excited. She is also babbling lots of other sounds. Lila has quite the bag of tricks now. She can wave, sign yes, she knows where her hair and mouth are, and can pucker her lips when you ask for a kiss : ) we're also getting quite the attitude! She loves to throw her arm over her forehead very dramatically and lean backwards when she is mad that i won't give her my glasses. Oh and we play peek-a-boo pretty much ALL day. I am amazed that she picks up on so many things at once. Sometimes I get worry about her developmental delays but I try to remember that she's been through so much in her short little life and will catch up. All of the doctors and therapists we've talked to have assured us that she will catch up but that it will take awhile. It seems like we go long periods without learning anything new and then BAM, she'll learn like five new things that we've been working on within two or three days.

So we're getting close to October and that means......Spina bifida awareness month!!! I was really hoping that we would be able to participate in the Walk 'n' Roll for spina bifida in Kentucky (our closest SB chapter) but it doesn't look like we'll be able to make it this year : ( next year we WILL be there and we WILL raise some money for SB! Team Lila! woo woo! And we will get to see our SB friends!

Also November is Epilepsy awareness month! Lila and a special little boy I work with have epilepsy so please check out www.getseizuresmart.org and get seizure smart!

My new job is going great! I'm planning a Family Fun night for our preschool families next month and i'm really excited about it. Daniel is doing pretty good. It turns out that his knee is going to be ok and doesn't need surgery (Praise God!).

Well that's it for now. Thanks for following!

Love,

Alyssa, Daniel, and Lila

CRAZY!!

This is what happens while Mom is at work.....Dad dresses the baby in Tap out and puts his belt on her....*sighs* also he will comb her hair over like an old man....o well he tries!!!
Daniel showing of his tattoo in honor of Lila after his boxing match for Guns 'N' Hoses
Lila's Kid Kart!
My sweet girl sitting up on her own!!!!!

I thought I'd post a bunch of random pictures that I should have posted a long time ago!! lol

It has been a crazy mess at the Hopper house! I got hired as the pre-k aide and parent coordinator at Allendale school and started back to work last Thursday. I LOVE it : ) I work with some pretty awesome students and teachers.

Lila has been doing great! Her favorite thing to do right now is shake her head no when I ask her to say mama and she also loves playing with her hair (or anyone's hair really). She is still getting therapy twice a week and is doing pretty well. Our developmental therapist has been working with Lila for over a year and has been very patiently waiting for Lila to warm up to her....and she finally has!! She's been a tough nut to crack but she's finally realized that Deidre is pretty cool and brings lots of fun toys! We're still being a booger when it comes to speech therapy and she refuses to "show off" any of her tricks. We got our G tube!!!!! It's been working super! I LOVE it and so does Lila i think. We had our first scare with it a couple weeks ago when it got pulled out (I had a minor panic attack) but the button hadn't ruptured or anything so I was able to put it back in just like the nurses had taught us at the hospital. In July Lila had her SB clinic at Cardinal Glennon. Everything looked great and the physical therapist even ordered her a kid kart!! It's kind of like a wheelchair/stroller. Oh, and we also got a new AFO since Lila's little chubby (and yes i do mean CHUBBY : ) finally!) leg and foot couldn't fit in her old one. I was afraid the new AFO wouldn't be a cute as our thumb bunny AFO because that one is SOO cute. It has little bunnies that are made of thumbprints all over the boot. But the new one has hearts on it and is equally as cute : ) I will post pictures of it later.

Daniel had his "last" MMA fight (it's always his last, i think he's come out of retirement 3 times lol) on the 13th and ended up possibly tearing his ACL. I've been to the doctor and hospital more with him lately than Lila. He went for a MRI on Thursday and we'll get the results on Tuesday which happens to be his birthday.

I think that's all for now! Thanks for following!!

Love,

The Hoppers

Back at Cardinal Glennon

It's been a while since I posted! . Between moving, work, and Daniel finishing up his program we've been super busy. Lila has been fighting a double ear infection for a couple of weeks now and on Monday night when I cathed her I noticed that her urine was really cloudy. So Tuesday I took a urine sample up to our local hospital and waited for the results to come back. Wednesday Lila had a low grade fever during the day and by the time I came home from work she was cranky and her fever was 101. Later that night around 6:30 her fever spiked to 103.5 so I called my mom and she helped me put Lila in a bath to cool her down and we gave her more Advil. Her fever went down and my mom went home. Around 12:30 her fever went back up so Daniel and I took her to our local hospital around one. They checked her results from the urine sample and determined she did have a UTI and the bacteria that had grown needed to be treated with IV antibiotics. So we quickly packed our bags and around 3:30 A.M. we were off to Cardinal Glennon. After trying to get an IV in several times (Lila is SUPER difficult to get IV's in) they finally got her hooked up with some meds around 8:00 A.M. By this time we are all exhausted and finally get to go to bed. We've been waiting around for our culture to come back to tell us what meds will get rid of the UTI. As you know Lila is EXTREMELY resistant to antibiotics for whatever reason so we figured we would probably end up here for several days and we were right. The culture was sensitive to 6 antibiotics. Four of which are IV meds. The other two are oral meds but not safe to give babies. So Lila and I will stay here four to five more days on IV antibiotics. Daniel went home to finish up some business with the house (and because as much as I love him, he drives me crazy when we are in the hospital! lol he definitely has ADHD) and because he will have to go back to work.

Lila is acting much better and her fever is down. Hopefully she will be all better and we will be home soon. This is our first hospital visit of the year! I'm pretty excited we made it this far without one!! LOL Thanks for following! I'll update more later.

Love,

Alyssa and Lila

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