Lumbar Puncture Results

So finally yesterday afternoon we got some results back from our hospital visit on Monday.

Evelyn's spinal pressure was a little high (as stated in a previous post) but the doctor is not concerned about it. Evelyn's pressure was about 22 and normal is 10-12. For the spinal pressure to cause Evelyn's eye problem, it would have to be in the 40's. The doctor thinks that Evelyn my just always have a slightly elevated spinal pressure (which is normal). I'm not convinced.

They also tested the spinal fluid to see if they found any white blood cells. This would indicated infection. They found no while blood cells or cancerous cells. So no infection or cancer in her spinal cord.

Evelyn was tested for a thyroid condition as well and it also came back negative.

Finally she was tested for several neurological disorders. Unfortunately these test are going to take a couple of weeks for the results to come back. So now we just get to wait.....again.

We are very happy that everything came back normal, but we would really like an answer. It's like we want everything to be fine, but something needs to come back positive. That way we know what caused her eye problem and we can fix it. Until then....we wait.....again.

13 Months

Evelyn is 13 months today! Alot has happened in the last month.

Evelyn hasn't gained any weight or height (we know because we go to the doctor every couple of days).

She's walking all over the place. If we just cary her in a store, she wants down immediatly. So now we have to put her in the shopping cart or stroller. Since we rearranged the living room, Evelyn has much more room to run around. On of her favorite things is to chase the dog around the dinning table.

Even though Evelyn can't see very well due to her left eye being turned in, she still seems to be a pretty happy girl. Which makes it so much easier on mommy and daddy.

She has two top teeth and working on two more. I'm glad she finally is getting some more teeth. She now has 4 but almost 6.

Evelyn is also drinking just milk now. Woooooohooooo. So far she hasn't had an allergic reaction. This is amazing due to the fact that I (mom) is lactose intolarant. I was really hoping she wouldn't get trait from me and so far so good.

I have gone back to work for our church two days a week and love it. Evelyn is going to one of our friends house on those days and seems to love it too. Mommy gets some adult time and baby gets some baby time.

This month really has been crazy with Evelyn's illness. We've been through many ups and downs. But thats life....it's always challenging. Thanks again for everyones help and prayers. Hopefully we will have some good news coming.

Lumbar Puncture

I will go ahead and warn you that his will be a long post. It will take me quite some time and tears to write this post. Thank you for following and taking part in our lives. We hope that by reading what is going on in our lives that it can help you some where in your life.

Today we went back to the hospital for Evelyn's Lumbar Puncture (LP). Daniel and I are not fond of hospitals, so when we woke up this morning....lets just say we were not excited. While getting ready this morning I found myself remembering our first visit (for Evelyn's MRI). I remember being extremely hot and decided to wear short-sleeves today. Then I found myself tearing up because I actualy knew what to wear. Like we were regulars or something....I really hope we don't become regulars.

So this time instead of being in the main Presby Hospital, we went to Hemby Children's Hospital. We took the special elevator which was really cute and full of mirrors. Evelyn was facinated with the mirrors. Upon ariving we waited for about 30 minutes. At 9:30am we were called back in the Pediatric Inensive Care Unit (PICU). The nurse began to ask questions about Evelyn and family history. Then she began to talk about the medications they were going to give Evelyn when it came apparent that they were going to perform the wrong procedure on Evelyn. I'm not exactly sure what they were going to do but I think it was an EEG or ECG or something. After correcting the nurse, she had to go talk to the Neurologist and get the right orders from her. Of course this took almost an hour.

While waiting on a fax of what was to be performed on Evelyn, the nurse decided to tackle putting an IV in Evelyn. It took two nurses and Daniel and I to hold her down and keep her still enough to get the IV in. They ended up having to do it in the bend of her arm. Unfortantly it ended up being her thumb sucking arm...ahhhhhh. Due to the IV being in the bend of her arm, they had to put a board on her arm to keep it straight. She really didn't like that.

Finally at about 10:30am the doctors new what they were suppose to perform on Evelyn. One nurse and two doctors came in to get Evelyn ready for the procedures. They first hooked her up to some monitors which required her to lay in the hospital crib...she didnt like that. Then they gave her some "happy juice". Last time they gave her it before her MRI it worked great. This time it didn't work at all. Then they gave her some pain medication. Finally they had to start giving her the drugs to put her under so they could get her to calm down before we left. They ended up having to give her four times the emount they had planned to get her to calm down and go to asleep. She fought until the last second....she's my strong little girl.

We went into the waiting room and I was just balling. Its so hard to watch your child to kick and scream while you hold them down. Sitting in the waiting seemed like such a long time. I know it was probably only like 30 minutes, but it was horrible.

They finally came to get us while Daniel had just left to get us a drink. So as I walked back the nurse warned me that they were unable to get me before she woke up. Earlier I had explained to them that last time she woke up without us and freaked out. So of course when I finally got to her she was screaming like crazy. She had just woke up, in this crazy hospital, with people she doesn't know but knows they just made her hurt.

After her crying, screaming, hyperventilating, turning beet red, she finally fell asleep in my arms. She took about a 45 minute nap in my arms before she woke up and had a bottle. Evelyn was finally beginning to recover when the nurse came in and gave us some bad news....the blood they took while she was asleep had clotted. They needed to take more blood. So once again, we had to hold Evelyn down while they drew what seemed to be a crazy emount of blood. She screamed, kicked, cryed...it became unbearable for me and I had to take a step back.

After that we asked for the IV to be removed. All I can say is "Way to much tape". The removed all of the other monitors and Evelyn was free for the first time in 3 hours. We got to hold her with out tangling anything. We were able to walk the halls and get some giggles out of her.

Finally we were discharged around 2pm. We are glad to be home. I really think that was one of the worse days of my life. To watch your child screaming helplessly and all you can do is just watch...its horrible. I just can't do that again....I hope I don't have to do that again.

We should have the test results back on Thursday. We get to wait again. I think that can be the hardest part. You have time to sit and dwell on it. You think about everything....the good, the bad, the worse. We do know that the spinal pressure was elevated. A normal spinal pressure is 10 or 12. Evelyns was 22. The nurse assured us that it wasn't extremely high or they wouldn't have let Evelyn go home. But to me that seem high....its double. So the removed some spinal fluid to get her pressure back to 10. Hopefully we will know more on thursday.

Once again, thank you to all our friends, family, and Kinetic. You all have been amazing. Hopefully we will get some answers from the tests they did today.

Neurologist

Yesterday we went to see an neurologist and didn't get good news. On Monday Evelyn will have a lumbar puncture. They will be testing the pressure in her spinal cord as well as doing some blood work.

I will be perfectly honest....I'm completly freaked out. Daniel and I feel like we are on a 3 week episode of House. Where is our House? At this point the neurologist doesn't think that the virus caused Evelyn's eye to turn in. She really thinks there is some underlying cause such as to much pressure or a nervous system disease.

So basically we will be doing test after test to start ruling things out. Right now that is the only way to find out what is going on. The doctors just don't know which is really hard on us because you expect your doctors to know what is wrong and to cure it. Not knowing whats wrong with our 1 year old daughter is killing me.

So we ask you to pray for little Evelyn on Monday...I'm pretty sure this procedure will be painfull. Pray for Daniel and I to have the strenght to get through this. And most importantly pray for Evelyns Doctors and that they will be given wisdom.

Crazy Eyes

So I'm finally getting around to posting again. With work and doctors visits, this week has been crazy. I finally got some pictures of Evelyn and her crazy left eye. I have to say the pictures don't due it justice. It looks much worse in person. Lately, Daniel and I have been calling Evelyn Crazy Eyes. Daniel perfers to call her cross eyed, but I don't like that. Below are some pictures of Evelyn this week and her crazy left eye. You will probably notice the rash on her face. Apparently, Evelyn's body decided to go though all the symptoms of a virus...first runny nose, cough, eye crossing, and now rash. Hopefully it will be gone in a couple of days. Lets just pray that she doesn't do this with every virus she gets.

Eye's Recap

Since we are near the end of the week, I thought I would recap on how the last two weeks have gone.

In the last 11 days Evelyn has seen some kind of doctor 8 times. We have visited our pediatrician 3 time (one-year check-up visit, cold check-up visit, and blood testing). We have also visited at ophthaimologist 4 times where she has had lights shined in her eyes, eyes dialated twice, and all kinds of 'fun' eye stuff. And finally, to Presbyterian Main Hospital for an MRI.

The poor thing is just tired of seeing doctors, but there is only more to come. Evelyn is currently taking a steroid and antibotic drops for her eye. She will continue to take these until the redness goes away (which its begining to fade). We have begun patching her eye for short periods of time. The doctor would like for us to try to do this for 2 hours a day.

Next week we go back to the opthaimologist to check on her progress. We also are going to see a neurologist. Hopefully we will also get good test results back from the blood they took today.

Once again...thanks to all of you for praying for us and thinking about. We will continue to update you on Evelyn's progress.

Red Eye

Yesterday we went to see the eye doctor again because Evelyn's left eye is now red in the outside corner. When the doctor stepped into the office and say Evelyn's eye...her reaction kind of scared me. Apparently its red on the eye muscle and she doesn't know that is causing it. Its strange that it became red after her eye crossed.

So we now have evelyn on steroid and antibotic eye drops. She gets it 4 times a day and we get to see the eye doctor every day until it clears up....ahhhhh. I'm getting tired of seeing doctors and it looks like this is only the beginning. The doctor wants Evelyn to have some blood work done to make sure nothing is out of wack. She also wants her to see a neurologist if the redness doesn't clear up.

I though when we found out that Evelyn didn't have a tumor that we were ok...just maybe an eye patch or something. But I guess I was wrong. The eye doctor was so stumpt by her eye yesterday that she called her partner that has been a pediatric eye doctor for 21 years and he said that he has never seen this before. They resorted to looking on the internet.....I can look on the internet!!!!!

So it looks my daughter is going to be a human lab experiment until they resolve the problem. Please pray for Evelyn as I'm sure she is confussed and tired of seeing doctors. Also, pray for Daniel and I as we deal with not knowing whats going on with our precious little girl.

Negative MRI Results

Can you believe it...we already have the results and they were negative.

We had the MRI today and spent a couple of hours in the hospital. Our pastors Daniel Hodges and Joe McGrew had lunch with us and kept us company at the hospital. Thanks Guys! All went well and we are home.

When we were leaving the hospital, the nurse told us that Evelyn would be tired and cranky for at least the rest of the day. Well, that didn't happen. Evelyn fell asleep in the car ride home but woke up ready to go. She played and talked until about a few minutes ago. So she went from 2:30pm to 9:00pm without a nap. Wow! She's done this a few times before but only when we are out at a gig for my husband, not at home. She is finally tired and sleeping.

The Jackson's game over this evening and brought dinner....thanks Jacksons.

It's amazing how much better I feel knowing that our little daughter doesn't have a brain tumor. Now we just have to see what we can do next to help her eye recover. We go see the doctor tomorrow to look at the redness in her eye...hopefully we can get some questions answered too.

Thanks to our family, friends, co-workers, Kinetic, and hospital workers for all your support and prayers. Evelyn seems to be doing fine for now...we will keep everyone posted on how her eye heals.

MRI

Evelyn will have her MRI tomorrow at noon.  We will be at Presbyterian Main at 11:00 am and we should be home that evening (it's an out patient procedure).

Thank you to everyone...family, friends, co-workers, and Kinetic for all your support and prayers. I will keep you all posted on how tomorrow goes and the results.

Cranial Nerve Six Palsy

So last night I couldn't sleep. I thought long and hard about whether to post this or not. But in the end I decided that this blog was originally created for my daughter in hopes that she would look at it some day. Secondly, it's for me so I can look back and remember when things happen. So here I go....

Wednesday of this week I noticed Evelyn crossing her eyes when I picked her up after work. I didn't think much about it. So that night we went to one of Daniel's gigs. We weren't planning on staying long since Evelyn had a runny nose and cough. But she was just having so much fun that we stayed. While there we were all joking about Evelyn's eyes. So we figured that she probably just learned how to cross them today and was having fun doing it.

Thursday, Evelyn kept her left eye crossed most of the day and I began to worry. When Daniel got home, he said I should take her to the doctor for her cough and have them just check her eyes too.

So Friday morning I called the doctor and asked to speak to a nurse. I explained to her about the runny nose and cough. She thought it would be best for us to come in to make sure she didn't have bronchitis or pneumonia. I also told her about Evelyn's eyes. She didn't think it was a big deal, but since I was already going to be in...the doctor could check that to.

Friday afternoon we went to the doctor's office. The nurse immediatly noticed Evelyn's eye and was concerned. I wanted to tell her "See....so I'm not crazy." but I didn't. She took her temperature, which Evelyn didn't have one. The doctor came into the room and once again immediatly noticed Evelyn's eye. The first thing he said was "She didn't look like that on Tuesday!" Tueday of this week we had her 1 year check-up. Finally, I didn't feel like I was a crazy person. So this eye thing really just happened over night. He check her lungs....and basically said she has a virus. Then he said he wanted Evelyn to see an ophthalmologist. So he went to the front desk and asked them to set an appointment for Evelyn next week. Well, about 15 minutes later one of the front desk ladies came into the room and said "You need to see this ophthalmologist today!" She gave me directions, etc and Evelyn and I were on our way.

Ok....so here I am in the car, driving to an ophthalmologist that is in Belmont, and not knowing exactly what is going on. Once we arived, we were immediatly seen by the ophthalmologist. I was not ready for what was about to happen next. She asked me all kinds of medical questions and then started playing with Evelyn's eyes. Shining lights in them, turing the lights on and off, trying to get her to track things around the room, etc. Then she decided to dialate Evelyn's eyes. Evelyn wasn't fond of the eye drops, but was a real tropper playing in the lobby for 30 minutes while the drops worked.

After her eyes were dialated, the doctor looked one more time at her eyes (lights, tracking, the whole bit). Not fun for mom who had to pin her down. Then, the diagnosis came. I'm sitting in a chair with Evelyn in my lap. The same chair that all of you have sat in before when you go to the eye doctor. The ophthalmologist looks me and says "We need to schedule an MRI." I look at her in shock. She continues to explain that the MRI will rule out the tumor possibility. Immediatly, my brain began to go crazy...tumor...what?

So here is the deal....Evelyn has Cranial Nerve Six Palsy. Basically its when the six nerve stops working. The six nerve helps control the lateral movement of the eye. And since Evelyn's isn't working, her left eye can't move from one side to another. Her left eye is suck towards the inner part of here eye and makes her look cross eyed.

There are two main causes of Cranial Nerve Six Palsy. One, the virus she has caused it. In that case, it will most likely go away in 6 months or so but we may have to do some things to help it like a patch. The other main cause is a tumor. This is why the doctor wants to do an MRI, to rule out the tumor option.

So early next week (probably Monday or Tuesday), we will go to the hospital for Evelyn to have an MRI. Then we just get to wait for the test results. Most likly this has just been caused by the virus. But there is still that small chance, which is why we are doing the MRI.

So we just ask that all of our family and friends to be thinking about Evelyn and praying for her. We will keep you all posted on the results of the MRI and her progress.

Birthday Party #1

Because we don't have family in town....Evelyn got to have two birthday parties. The first party was in Greensboro with family and local friends. Below are some pictures.

Evelyn with Gi Gi Perkins. She is trying a butter cookie for the first time. (I think she ate about 4 of them that night...guess she liked them.)

Evelyn with daddy and Granddad Jones.

Evelyn playing in the kitchen with Grandma Jones.

Evelyn touches icing for the first time.

Evelyn feeds mommy the icing. That cake and icing never made it to her mouth....she really didn't want the cake.

One Year Check-Up

Evelyn had her one year check-up today and everything is great.

Stats:

Weight: 17 1/2lbs (4th percentile)

Hight: 29 inches (40th percentile)

Head: 17 inches (5th percentile)

Evelyn is officially walking all over the place. She moved up to the toddler room at church last Sunday. She can also go from a sitting to standing position with no help but just the floor. Thats pretty crazy. Her seperation anxiety is has really increased...but she seems fine once I leave. Monday, when I dropped her off at Gina's, she even waved to me while crying as I left. She loves to wave to people, clap, giggle, and has become an indian giver. Evelyn says Mom, Dad, Dada, and will immitate other sounds if you say them. Some of her favorite sounds come from the movie Finding Nemo. She loves music which is good since that is a major part of our lives. So the sippy cup transition hasn't really happend yet like I hoped. She will drink water out of a sippy cup, but not formula. Next up....trying whole milk.

Evelyn with Mom, 2 Grandmothers, and 3 Great Grandmothers

Nemo

For christmas, Evelyn got a very large stuffed Nemo from her uncle Ben. If you know Evelyn, then you know that her favorite movie is Finding Nemo. Below are some pics of her with Nemo.

Grandpa's Glasses

This Christmas Evelyn had just as much fun playing with Grandpa Perkins' glasses as with her new toys.

Christmas = Sitting on the Counter

Sometimes you get to do things during the holiday's that you don't normally get to do. So Christmas morning we were all eating breakfast in the kitchen. And Evelyn got to sit on the counter. She really enjoyed being in the center of all us.

Christmas from Santa

When I was a child, we woke up Christmas morning with one or two toys that we unwrapped and came from Santa. So this year we continued that tradition with Evelyn. She got to walk into the living room to see two very special gifts. Below are some pictures showing her excitement.

Evelyn's first reaction seeing her new toy.

Checking out her new kitchen/living room.

Laughing with grandma.

Lounging on her new couch.

Climbing the couch.