I'm tired of having my head examined!

Hello again,

Just another update to let you know that I had my 24 Video EEG on Monday/Tuesday of this week. They had a cancellation so Mom and Dad had to act quickly to get me loaded and back over to Florida Hospital. I got a room at the end of the pediatric hallway (6322) and then Dad began bringing up all my stuff to play in to my room. The room was rather small with a couch for Mom to sleep in and a huge metal beast of bed for me.

When they got me admitted they checked my vitals and then began the grueling task of placing all those wires on my head and then a ton of gauze around it to keep them in place. My head wardrobe gave the impression I was going out in the freezing snow to play. The wires were attached to a box that was plugged into the wall. The rough part is that the box was in a book bag that had to be carried or arranged where ever I went. I couldn't crawl around or leave the room. I was a real champ getting the wires placed on as long as Dad kept feeding my more puffs. Mom and Dad had to push a little button when I did my strange straining activities (thought to be seizures) and write down the times so they could be looked at especially on the charts.

Me wrapped up sitting in the giant bed.

Dad had to leave around 10pm since there was only allowed one visitor after visiting hours. He came back at 8am with coffee and a few goodies for Mom. I took a nap with him that morning since I didn't sleep to well that night being tied to that machine on my head. I think my longest stretch was two hours.

Like my new winter outfit?

The good news finally came when Dr. Barr (my neurologist) came about 10am. He said that their were no abnormalities during the exam, even when the button was pushed for my supposed seizures. He said I could slowly start to come off the medication and hopefully in six weeks when I see him everything will still be fine.

We still haven't explained away the strange behavioral thing I do, but the overall thought process is that I will outgrow it.

Thank you all again for all the prayers for me. I know their were many out there that prayed that I didn't even know. It is most humbling to know that I was cared about so much and that God did some wonderful healing and comforting for me and my family. God is awesome!

Love,

Natalie

MRI Over

Me and the one of Doctors at the Hospital.

Haaaah,

I wanted to post a message to let you know that my MRI is over. I took the MRI on Thursday at Florida Hospital. I had to go without food for a good part of the day because of the MRI and because of the backlog of getting me in. My appointment was for noon so I could only have some milk until 7:15am. While I was there I got to play in a pretty good size play room and they had a big stuffed bear I liked to smile at. Mom and I sat inside a playhouse for awhile and I took a good nap around one. The staff there was really nice and although my appointment got pushed back two and half hours, I wasn't too fussy. Mom and Dad cried a bit when I was put under but I was too busy trying to get that smell out of my nose to notice (smell of fingernail polish remover). In the recover room I was weak and upset, got a little better when Mom and Dad got there and the nurse remove the huge IV needle out of my hand. I quickly drank down a box and half of juice and then went home.

The big bear in the playroom.

Me and Mom playing in the little playhouse.

Dr. Lacy (My pediatrician) was able to get the MRI report on Saturday and he called Dad and told him that the report was normal. YEAH!! Thanks for all the prayers for a good report.

I went in for my nine month visit last Tuesday. I am up to 15lbs 3ozs and my length is 26". I am still a lightweight, but my parents are still working on me. My parents invested in a baby scale so we can see my process as we go.

On Friday Dad poured some sand in my sandbox. At first wasn't impressed and a bit apprehensive of the sand, but I eventually got into it. I started throwing it around and mashing it between my toes and fingers. I even took a big handful of sand in placed it my mouth.. mmhhh sand.

I think Dad was the one who wanted sand in the sandbox. ;)

Aunt Jan and Cooper were layover'd at MCO on Friday afternoon so Mom and Dad took me to the airport to see them. We had a good time showing them my new skills. We also got to see this big fish tank that I enjoyed watching the fishes going round and round in.

Aunt Janet, Coop and me playing at the airport.

Aunt Jan talked the folks into a photo. Check out the fish tank to the left.

Well Mom and I are delivering meals on wheels today. Tomorrow I get my nine month shots. Wednesday we have Kindermusic. Hope you all have a good week.

Love,

Natalie

9 months, 8 days later

Which one doesn't belong in this basket?

Good Evening,

It has been a few weeks since my last post and I wanted to update you all with what has been new in my short life. First I will start out with the new things I've learned how to do. I am crawling and sitting up on my own. I can clap my hands together quite well. I am starting to figure out how this voice thing works and am saying, "da, da, da, da .. " quite a bit now. I have been learning sign language for almost three months now and am pretty good at recognizing some signs Mommy and Daddy do now. When prompted verbally or with the sign I am really starting to catch on. My favorite one my parents do is "Where is Daddy?" and then I look for my Daddy.

I am attending my second session of Kindermusic now which is hard to explain, but we meet once a week and play with different toys and music and learn new songs. I always have a good time watching the other kids and playing with the new toys. I am starting to stand up by holding onto things, but I am obviously still a little wobbly on my toes. I received a new sandbox recently from Dad's friend Chuck and even though they have not put sand in it yet, it is a lot of fun. The sandbox is in the shape of a big red dog and I like to sit in there and play with my little beach balls.

From a medical perspective things are still a bit up in the air. My weight has been a problem, but I feel I am making great progress at getting that in order. I went in a few weeks ago and weighed 13lbs 6ozs. The Doctor really wasn't impressed and said I needed some more work on it. My Mom took me back in a week later and I was up to 14lbs 11ozs. The Doctor still doesn't seem impressed, but I think 1lb 5ozs in a week is good progress. It has been a couple weeks since I went in for a weight check, but Dad ordered me a scale and it should be here next week so we can check more often. Also next Tuesday I go in for my nine month checkup so I'm sure I will still be moving up on the weight.

As far as the neurologist goes, I went back yesterday for a follow up. The medicine had been bumped up two times and none of us had seen any real change. Mom and Dad were not ready to leave this appointment until they could show one of the specialists what exactly I was doing. We met with with CPNP and after placing me in my Bumbo for a minute she was able to see what I was doing. She was pretty sure what we were seeing was not seizures because of some of the symptoms I was not showing like she could move my feet (they were not locked like someone having a seizure) and my eyes were not focused off into space and I was still dis tractable. This was sort a plus, but they still don't know what is wrong and with the abnormal EEG they still want to do the MRI and now they want a 24 hour video EEG. The CPNP still did not want to take me off the medicine until after the MRI and EEG since I could still be having a seizure in the future and it is not easy to just stop the medicine. The video EEG is done in the hospital during 24 hour period and the equipment is still strapped on my head (which I hated last time). My parents and I are to try and carry on a normal day in the hospital room while the Doctor monitors the results. My head size was marked in the 2nd percentile, which was not that strange to me since everything about me is low on the chart.

Next Thursday I go in to get the MRI. My parents are a bit worried since I will have to be put under and an IV stuck in my arm to insert the dye. It will start around noon, so if any of you think of it we could certainly use your prayers.

I am still pretty much a happy baby and have lots of fun time around the house with Mom during the day. Mom still takes me places even though I still have my little spells when we travel, but she limits them to short trips unless I nap on the road. My Mom has made my situation better by just learning to cope with it and not placing me in the devices that cause my spells and I do quite well most of the time. Our hope and prayer is that the MRI won't show any problems and I'll just out grow this over time.

Much Love,

Natalie

Someone help me out of the prison!

Thanks Chuck for the Big Red Dog!

Trying to enjoy myself at the water park. All this fun for a buck!


Me and My Da, Da, Da, Da..

Ms. Carole gave me the best set of balloons. I had the best time with them. Hopefully I can figure out how to upload the video.

Where's Natalie?!? Daddy made me a pillow nest

I like to sit on Dad's shoulders and pull his hair..