And It's Only Tuesday

Monday: We called the Neurologist because Olivia was having seizures again. They upped her dosage to double what we started at last August. We are also having to do a 2 hour EEG at Vanderbilt on July 16. That was enough for the week along with work problems. I had no idea what was in store for Tuesday.

Tuesday: (7:00am) Liv was having a great morning we got to our sitter's and Olivia was thrilled as normal she ran up to Brooke and loved on her and found a kazoo like bubble blower - Brooke and Olivia ran off to the Kitchen while Melinda and I talked in the living room. Then before we knew it they were running behind us playing chase like normal and Liv tripped like normal but this time she had stuck the bubble blower in her mouth. Melinda and I had originally thought she had gagged herself but as she turned around we saw the blood coming from her mouth. As mothers we both FREAKED. I sat on the couch and calmed her down as Melinda got her a wet rag we got the bleeding to stop and he calmed down after 5-10 minutes we couldn't see where the blood was coming from but assumed that she had busted her gums or something so we gave her some Tylenol shortly after Liv said "Mommy Mouth" and opened her mouth to show me where the blood was really coming from at which I showed Melinda immediately and decided it was best to take her to the ER at Hendersonville Medical. 

HERE IS A PIC OF HER MOUTH: CAUTION NOT FOR THE WEAK AT STOMACH

(8:00am) Todd met us at Hendersonville Medical. They got us right back where 2 doctors looked at her mouth and decided surgery needed to be done by a plastic surgeon. Liv did so good showing anyone who asked to see her mouth, I was so proud and she never cried after the initial accident. They then consulted the on call plastic surgeon who said she needed to be at Vanderbilt Children because he did not have the right tools for her size mouth and they had no pediatric recovery room. They also thought it was best to go by ambulance. It took 1.5 hours to get the ambulance there. So Liv got bored and played with anything she could find.  

(11:00am) About 5 minutes before the ambulance got there Todd got frustrated and went to the office and told me to call him when the ambulance got there and he would meet us at the hospital. Once the ambulance came I had to go get the car seat from my car to strap in the gurney for the ambulance ride. I am going to be honest I was pretty excited about my first ambulance ride but Liv definitely wasn't. The EMTs were amazing though and they even had a brand new baby doll for her that she LOVED. Once she got used to it she loved looking at the cars from the back of the Ambulance.

(11:30am) Once we arrived at Vandy Todd's Mom was there waiting for us at the ambulance drop off they rushed us back to a room with 4 doctors it was like a scene from Greys Anatomy. The my mom and Todd came to meet us at the hospital. The resident said we would need surgery, the attending said we wouldn't but was going to call the on-call faces doctor (ent, oral, plastics) to get the final say so. We were then told it would be an hour before the on-call ENT doctor could see her. During that time they brought a nursing student in to see her mouth since its not common and practice vitals and such. And once again Olivia did amazing. She never cried, asked for food or drink (she had nothing after 7am), and always let the doctors check her. The ENT doctor came down and said probably no surgery but wanted to check with the doctors that do cleft palettes since it was her soft palette. The doctor came down and said they could leave it or re-intact it so I asked about removing the hanging tissue and he said that was also an option but wanted to check with his boss (got to love teaching hospitals). So Liv played hide and seek with me and my mom.

(2:00pm) Then the doctor returned to us saying his boss thought the best solution was to re-intact the tissue. So we let Liv play a little longer. Then they had to do the IV she was once again amazing letting the nurse show the student nurse all the different places she could do an IV. The entire time we were at the hospital Olivia never really cried would just point to and say "mouth" to let us know something was wrong. While Liv was getting her IV she got a special delivery from the gift shop with a pretty balloon and stuffed dog from her Aunt Megan, Uncle Dan, Daniel and Mason. She was so excited to play with them.

(3:00pm) Once they got the IV we took her upstairs and got her prepped for surgery met with the doctor and anesthesiologist and off she went. The surgery was only 30 minutes and the before and after pics the doc showed us on her phone (got to love technology) were amazing! We then waited another 20 minutes before we got to see her as she wok up from the surgery. She was so sweet and never even coughed unlike when she had the anesthesia at her last MRI. We were discharged an hour later with prescriptions in hand. She slept the whole way home and came in and played and ate and drank some took all 4 medications perfectly and is now snuggled up asleep next to me in bed. She did so wonderfully today and I am so unbelievably proud of how brave and well behaved she was. And I am truly hoping for the most boring rest of the week for my sanity. Thanks for all the love and well wishes!!

The Results

Friday after work I went by Vanderbilt and picked up the CD of images to bring to her appointment Monday. I brought the CD over to my mom's on Saturday to look at the images the report was also included on the CD. Mom and I read it over and honestly became quite concerned. The two main items of concern were the statements "substantially incomplete myelin" and "possible lesion or artifact on the t2". Of course I googled the crap out of it and began freaking out - yes I know Dr. Google is ALWAYS wrong but I just couldn't help myself.

A few items to note so that you can fully understand the above terms.

Myelin is the white matter of the brain and surrounds the exterior of the brain. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, the impulses slow down. This can cause diseases such as multiple sclerosis and most children with delayed myelination are severely delayed.

An image artifact is any feature which appears in an image which is not present in the original imaged object. An image artifact is sometime the result of improper operation of the imager, and other times a consequence of natural processes or properties of the human body. It is important to be familiar with the appearance of artifacts because artifacts can obscure, and be mistaken for, pathology. Therefore, image artifacts can result in false negatives and false positives.

I picked Todd up from the office and we went to Dr. Cruz's office. As always we went straight back (they are wonderful like that) I gave the nurse the CD of images. Dr. Cruz came in and stated that the MRI results were pretty insignificant which had me baffled. As we discussed he said that the statement "substantially incomplete myelin" was typical for her age because it shouldn't be complete at this age and that there is a huge difference between DELAYED myelination and INCOMPLETE myelination and that we will do another MRI at age 3 to see if it has fully developed as it should. Then we spoke about the lesion/artifact he said on the images that he looked at it was a very small dark spot deep in the brain - think the inner most part of the brain behind the right ear. This could be a cortical dysplasia or it could be nothing - it is still hard to tell since her brain still hasn't fully developed. We then discussed the original EEG and how it showed the spike at the front line of the brain. And then discussed the fact that we believe she had a seizure the other weekend I described how she hadn't napped all day and at dinner she became unresponsive for around 20 seconds. Then she slept horribly that night was extremely cranky and slept all day the next day. He said everything I described sounded spot on for a seizure but he was going to let it slide. The next seizure she has we will have to do labs to see how quickly she is metabolizing the medicine then up her medicine dosage and then do more labs. And we will also have to repeat the EEG this time doing it at Vanderbilt instead of Centennial. Over all it was a great visit and I walked away feeling much better. Out ultimate goal is for her to become completely seizure free and secondly to figure out why she is having the seizures.

MRI day

History: In May 2011 Olivia went in for an EEG at Centennial Hospital just as a precaution for some jerky motions at 9 months. The results showed and abnormality in brain waves coming from the front of her brainn between the two spheres. We were referred to Dr Cruz a neurologist who had us go in for an MRI in July 2011 at Vanderbilt Children's the MRI showed a small amount of delayed myelination behind her right eat and we were told that she had Cortical Dysplasia. But because the MRI and EEG showed issues in different parts of the brain the doctor didn't want to put her on medication. However a few weeks later after more seizures we decided to put her on Keppra. In January 2012 Olivia began to blink continuously for 10-30 seconds at random times so we preformed an eye exam which showed normal vision and then upped her medication dosage which has stopped the blinking.

Today: Olivia slept GREAT last night and got up at 6am (as always) and we got up and showered and watched movies she only asked for a snack once (no food allowed after 2am) and was pacified with a cup of apple juice and wasn't too upset when I took away her juice at 8am. At 9am we left to pick up my mom (who we haven't seen in over 2 weeks) from work and then went to the hospital. Olivia was in a great mood in the car but did ask for crackers, candy, and juice and was upset when she didn't get any. Once at the hospital we fed the fish and played outside (LOVE Vanderbilt Children's) we then went back and weighed her - 29lbs dressed! - took her oxygen levels, temp, etc and played toys and such talked to nurses and the anesthesiologist they were all so great with her - they had toys for her and Mickey Mouse Clubhouse on. We sent her back with them and we were told it would be 1.5-2 hours before we were called back. Mom and I went to the cafeteria and had lunch and then went and sat in the park and chatted waiting for the call. It only took an hour and 20 minutes! But on the call I could hear her crying in the background. Mom and I went back to the recovery room where Liv was laying down crying and coughing with nurses around her. They stepped back and let me pick her up she kept coughing like she was choking and crying like she didn't want to be awake and her eyes were swollen and face was all red from the tape on her eyes and face. The nurse told us she did great with the gas but as soon as they took her off she popped up awake which never happens and then she took out her own IV (sooo Olivia - she won't even wear a band-aid) and that he was going to have to do some paper work before talking to us and apologized (guess thats why it didn't take long). The entire time she refused to eat or drink and kept coughing like she was choking, she would sleep with a paci and then get mad and throw it. FINALLY she took some juice and let us dress her after we got our discharge instructions we went to the lobby where she finally ate some gold fish but was still fussy. We made it to the car and got her strapped in but as soon as we got in our seats she started choking on her gold fish (her mouth was too dry to swallow them) and she puked them back up on my hand as I unbuckled her. Once buckled back in she calmed down and we took mom back to work where Liv screamed bloody murder over her leaving. Then we went to Todd's office - by the time we got there she was doing MUCH better. We then went CVS and picked up her Keppra and then went DQ and got her lunch and I got a Strawberry Shake that she LOVED and drank most of (see below). The doctor should have the results in 24-48 hours but we may not know anything until Monday when we meet Dr. Cruz, based on the results we may need to do a repeat EEG. I will update on Monday :)

Craziness of Life

It has been way too long since I last posted. The holidays were beyond chaotic and then as soon as the holidays were over I started my real estate classes and will hopefully be finished soon and practicing real estate as a buyers agent for my current boss. Liv has grown so much! She is now speaking in full sentences and is by no means a baby any more. We also had to up her medication due to her seizures returning. Thankfully the increased dosage has helped and she is doing much better. We head back to Vanderbilt on March 14 for a new MRI to see if there is any change in her delayed myelination and based on the results more tests may be involved. Luckily she is developing outstandingly however I would love a clear diagnosis still, as the doctors are still completely baffled. Here are a few of my favorite pictures from the last few months.

November

We have made it half way through the month. And it is starting to get colder out. I was quite excited that it was warm last weekend and we got some great pictures of Liv and her cousin Mason playing in the leaves and feeding the chickens at Mimi's (Todd's moms).

Olivia's Nonni (my mom) decided to buy her some slippers at TJ Maxx a few weeks back, however the only ones they had in her size were some boy's greeb monster/alligator slippers. And she is OBSESSED with them, she has worn them all week to the sitters and refuses to take them off at anytime.

October

This has been such a crazy and amazing month. We took Liv to Disney World the first week of October and she loved it. My family goes every 5 years and it was the perfect timing for Liv as she enjoyed the characters and wasn't afraid of them. We went when my little brother was her age and we have the cutest picture of him kissing Goofy on the nose and my one goal was to get Liv kissing Goofy and we did - along with her kissing many other characters!

We also went to the pumpkin patch in Springfield, it was fun but would have been better if Liv was a little older, we will definitely be taking her back next year.

AND finally...we got Liv's halloween costume and just had to try it on. Definitely not your average 1 year old girls costume, but I thought it was the cutest and she LOVED the Pirates of the Caribbean ride in Disney so I thought it was appropriate and she loved it and I got one good picture. As she gets older she is much less cooperative with the camera.