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!!

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

Nap Time

Casts and Therapy

We went to St. Louis to Cardinal Glennon last Friday to see the orthopedic surgeon. His name is Dr. Puryear and he was super nice. After the three hour drive there we found out that Dr. Puryear was two hours behind in his appointments which meant a LONG wait for us. But thankfully the time went fast and we were able to see the doctor. Once the he looked at her foot the decision was made to put a cast on Lila's club foot. The cast will be worn for six weeks with the cast being changed every week. So now we have to go to St. Louis every week for the next six weeks but it is worth it. Lila doesn't seem to like her cast much and has been hitting people with it lol. When she is mad she picks up her leg with the cast and slams it down. Daniel and I feel bad and give her favorite treat (grape Tylenol) lol. She is getting so big! She is gaining her weight back and is getting stronger everyday.

Lila has also started her developmental therapy each Thursday. The therapist comes to our house and works with her for 45 min. Miss. Speth (the therapist) is wonderful and Lila seems to like her. Although she does hate it when Miss. Speth makes her do tummy time. Lila is holding her head up and looks like she is trying to crawl already! She is rolling over but she has to get really angry to do it lol. The therapist is encouraged by her improvement so far and thinks Lila is doing great. Lila did have some trouble tracking things with her eyes and I was pretty concerned about that but in the past couple of weeks she has gotten better. I think that is all for now but will post some pictures later and another update after our St. Louis visit!