Our sweet Lila Grace earned her angel wings December 20,2012 at 1:08 A.M at Cardinal Glennon Children's Hospital in St. Louis, MO. Lila was 2 1/2 years old. She became septic because of a shunt infection and that is what caused her death. Please keep us in your prayers. We are beyond heartbroken and still in shock. Thank you.
Love,
Alyssa and Daniel

Surgery Surgery Surgery

Hello Friends,
It's been forever since I've updated on Lila. We have had a tough year. It started off pretty good and Lila had made so much progress! She was sitting pretty much on her own and talking a lot more. She was catching up developmentally and hadn't had a uti in months!! We had her 2nd bday party all planned and all our Sesame Street decorations bought. And then a few weeks before her bday Lila got RSV. She was admitted to Cardinal Glennon for some breathing issues thought to be related to the RSV and some possible seizure activity. She bounced back quickly and was still acting  a little sick but still kicking SB butt : ). Then she took a crazy turn for the worse. On Feb. 24th Daniel called me at work and said Lila was having some issues breathing and that he was going to take her to E.R. I got a sub and was able to leave school and go to the E.R. When I go there Lila was smiling and said "mama" when I walked in. Daniel said they thought it might be pneumonia and that they suctioned her out and she was breathing better. The doctor came in and said that they were going to send us by ambulance to Cardinal Glennon just to be safe. So Daniel went and back the bags and took off and I rode with Lila to St. Louis.

Once we got to Cardinal Glennon they got us in a room and settled in. Lila was totally out of it at this point and had been sleeping since we left Mt. Carmel. We chalked it up to the pneumonia and settled in to bed. About 30 min later Lila starts this awful breathing sound. She was struggling to breathe and gasping. I called the nurse in and she called the on call doctor. She came in to check it out and listen to Lila. Lila's breathing is more and more labored and the doctor was baffled because her air way sounded clear. Suddenly Lila stops breathing.....the next 24 hours were the longest in my life. The doctor called a code blue and suddenly 20 people are in the room. The end up bagging her and eventually intubating her. They then rush her to a CT scan and then to the pediatric intensive care unit. When they finally stabilized her they let Daniel and I go back to see her. The PICU doctor comes in and gives us the result of the CT Scan......shunt failure and increased inter-cranial pressure caused Lila to stop breathing. My heart dropped.....how did we miss the signs? She had been vomiting but Daniel and I had had the stomach flu so we thought thats what she had too and our pediatrician agreed. She had been more tired but she had had RSV and the doctors told us that was the cause of the fatigue. No one had thought to check the shunt and I hadn't questioned.

Seeing her in the PICU was the hardest thing I've had to do. We were only back there with her 20 min before Neurosurgery came to do a  External Ventricular Drain. They explained that since Lila had a UTI (i forgot to mention that earlier...she had gotten the uti a few days before this happened.) they could not do surgery to fix the blockage of the shunt and that the external drain was needed. Lila spent her 2 bday in the PICU. So to shorten the story we had to wait a week for the UTI to clear up and then Lila had surgery on Saturday March 3rd. The surgery went great and we were confident that Lila would come off the ventilator with no issues....but that did not happen. When they first tried to take her off she was off it an hour and then they had to reintubate her. Her airway was so swollen from being intubated that long that in the process of getting the vent back in they knocked her two front teeth out :( my poor baby looked rough....she had no hair (we asked them to shave it all during surgery because it was patchy) and no front teeth.....And we had a new issue...Lila wasn't waking up. She was no longer sedated and was not her self. She couldn't track things with her eyes anymore. She wasn't trying to pull the vent out. She actually wouldn't move at all. One doctor told us she was probably had severe brain damage and that  she would never improve. We were heartbroken....they tried again to extubate her and she did better! Her breathing wasn't 100 percent and she had to be positioned carefully but was not needing oxygen or the vent. The neurosurgeon wanted an MRI but she would need to be sedated for it and her breathing was not stable enough to risk it without a venilator. So they reintabated her. At this point the PICU doctors were trying to talk us into getting Lila a trach but I was not having it yet. I knew there was something else going on and our neurosurgeon agreed. Dr. Elbaba (neurosurgeon) suggested decompression surgery to see if that would help her breathing and some of the issues that she was having. So on Monday March 12th Lila had decompression surgery. It went well and it helped some of the issues. 

The MRI showed no stroke or brain damage!! We were blown away!! Lila was showing some signs of a stroke (only using muscles on one side of her face) but she was still not back to baseline. The MRI did show that Lila had a tethered cord and several cysts and two sphincters on her spine. Her spinal cord is not able to grow with her at this point and she will need detethering surgery this summer (boo). After a month in the PICU Lila was moved to a transitional care unit. And after 37 days we finally brought her home : ) We have had a battle with some pneumonia but she is doing great!

Lila on Easter :)

She is still not back to herself. The last time I've heard her talk it when she said "mama" when I walked in the      E.R. in Feb : ( it breaks my heart to see how much she struggles to gain her strength back. She is like an infant again. Everyday gets a little better and she still is having some issues. Our neurosurgeon assures me that she will be better after the tethered cord surgery. On a bright note her kidney's look fantastic!!!! And her hair is growing back darker and thicker!! God has truly blessed our family and answered our prayers. I know that his hand was on my little Lila and that He never left us. I want to thank everyone for their prayers and support. We have been truly blessed by all our friends and family! 


I promise to update more this summer!!
Love,
Alyssa, Daniel, and Lila

Kid Kart Pictures!

                                                                     Happy Girl!!!

Progress!

It has been forever since I have updated the blog so I thought I better let you all know how awesome Lila is doing! Since Lila got her G tube she has been gaining weight and growing like a weed! We recently had a myleo clinic this past Wednesday and received really good reports. Lila had a renal ultrasound and some blood work done when we got there and then we waited and waited to get called back to clinic. The first doctor we saw was our urologist and his amazing nurse. He was so excited about Lila's progress! Her kidneys look "gorgeous" and apparently look nothing like they did this time last year which is amazing! Last year we were headed toward removing one kidney and now they both look gorgeous according to the Dr. Firlit! God is so good!! All the cathing and meds are definitely working!
We also saw our orthopedic and they said everything looks great :) they said that she is functioning at about L3-L4 and that she has good movement. We also picked up the Kid Kart!!!! A couple of months ago the company called to tell me that they changed their colors of the kid kart and asked that we look up the new colors on their website and let us know what color we wanted. After checking the new colors out we decided on purple :) Lila LOVES her kid kart!! I am so in love with it! It is so much easier to get her around and she loves sitting up and banging on her tray :) whenever I put her in it she smiles ear to ear! This week has been a week full of new equipment! We also got a new pump! It fits in a little backpack that we can take anywhere it is super awesome. Our old pump was attached to a IV pole and was impossible to travel with.So this new pump is a HUGE improvement!
Lila is getting so big! She is babbling and talking a lot more and lately has been trying to push up on her hands and knees when on her belly. She can only hold her self up for a small amounts of time but she's making big progress. When we first found out that Lila had spina bifida I worried that she would never walk. Now I've come to realize that it doesn't matter if she does or not. She's my baby and I love her no matter what. I realized this week that it no longer hurts to think that my baby is in a wheelchair. I was afraid that when we finally got our kid kart that it would feel bittersweet. But when we put her in her kid kart for the first time and I saw her smile and look so excited I knew that whatever happened I just wanted to see her have that look of excitement and happiness. There wasn't any bitter at all...only sweet. I am so excited about this new opportunity for Lila and can't wait to see how this kid kart will help her!God has blessed me with a truly amazing gift!

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

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

On the right track

Lila had a doctor appointment yesterday and we finally got some good news. She weighed in at 13 pounds! Hallelujah! The doctor said that she has gained approx. 18 ounces in just under a month! We are so glad that we are finally putting some weight on : ) she is continuing to get stronger. Tomorrow we have a speech therapist coming by to do a feeding evaluation. Hopefully she can give us some answers. Lila doesn't really want anything to do with her bottles lately. In the last few days she's only taken about two ounces from a bottle. I'm hoping that the speech therapist might find something that the doctors have over looked.

In other news, reality has started to sink in. Until the feeding tube, you couldn't tell by looking at Lila that she had spina bifida. She was born with a club foot but that was easy to hide and the cast was usually under pants and such. Now that Lila has the NG tube EVERYONE seems to be looking. I really don't mind when people ask me about it, I'm happy to explain but I really can't stand when people stare at her or look at her pitifully, which happens a lot. I guess I knew that one day we would deal with something like this but I wasn't prepared for some of the reactions we get. I wish that everyone could just see the miracle baby I see but at least we know how awesome she is : ) and everyone else will figure it out later!

Thanks for following!!

Getting ready...

We are getting ready for the wedding!! Oct 2nd is coming way to fast! My mom found a beautiful dress for Miss. Lila to wear : ) we have been doing a lot of shopping. The pictures above are of Lila before a shopping excursion. Lila has been working hard on trying to sit up. She also is working hard on getting some teeth. Her hand is constantly in her mouth : ) and she is drooling more than usual. We are still doing DT (developmental therapy) once a week and OT (occupational therapy) once a week. We are looking into getting a vision assessment and a feeding assessment. Our Early Intervention coordinator is hoping to get us a feeding therapist to work with Lila. Lila is slowly gaining weight and is pulling her tube out less. We are still having to cath her three to four times a day but she is peeing on her own somewhat. We will see the urologist when we go back to the GI. That's all for now! Blog more later! Thanks for following!

Love,

Alyssa, Daniel, and Lila

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!!