Thank God for Technology!!!

Just sitting here trying to give the blog a little update while the boys are glued to the TV. What better time to send a quick update.
I started Drake with a new Neurologist in Greensboro. I liked his ideas
We are currently planning on heading to UNC for a third opinion for Drake's "episodes". poor little guy is still having a difficult time keeping his feeds down. I'm still not convinced it's not the Kepra for the seizures. After vomiting for 4 1/2 months,almost daily, I thought this week was going to be different. He had gone 5 whole days without getting sick then yesterday he made up for lost time. We have been weaning him of the Kepra to see if this will help (and to see if the seizures come back, even though I'm not sure they ever went away!). We also have an appointment with the GI doc to have another looksie :)
Last month I sent a couple videos of Drake's episodes to four doctors I thought might could be of assistance!!! Thank God for Technology and Thank Shane for the new camera with video, for Christmas!!! (Nice surprise from him and the boys!!!) Any who, three docs responded with in 12 hours and the forth on the following day! What does that tell me? Is this more serious than hey thought? Is there finally a doctors that sees what we see? Is there something that can be done? What ever it is, I have people who are now responding!

Drake's original Neurologist, who moved to OH, called one night to talk for an hour. He spent his own time to answer questions and concerns for our sake. He is the same doctor who gave us the incite about the "Joy" . He feels these are seizures as well and that if UNC doesn't help, we should try John's Hopkins in Baltimore.

We originally had an appointment with UNC in May. Our GSO Neurologist was kind enough to call and get us an appointment for late March.

Here is footage of what I sent the doctors;

Drake Naylor's Episode


Drake Head Drops Scene 2

Drake episode 3

Merry Christmas to All!!!

How do I catch up on 3 months gone by? I guess I don't! It seems after we sit here in the hospital waiting for Santa to arrive, the past 3 months are gone by and still here we are. Drake has been sick and not had a full meal in a week. He finally got too dehydrated yesterday and here we are for the BIG day tomorrow. They started IV fluids and he is responding well!!! Mommy had to go home last night to finish wrapping and make sure all was ready for Santa to come. Grant (big brother-6) was assured that Santa will make it to the hospital, so we're having a pajama party tonight in our Christmas pj's and will await the arrival of Jolly Old St. Nick.

After sitting here for the last couple hours, I thought it would be a good time to catch up on the blog! So here is the QUICK version;Summer was pretty uneventful! The Drake Naylor Invitational was a BIG success, $62,000!!!!!!! (More to come later with a video) Actually very few doctor appointments, but also little help with his "episodes".
After starting back to school, Drake ended up in the hospital due to an accident at school. His feeding tube was pulled out and had to stay at Brenner's for 4 days. I was told it was going to happen one day, I'm just glad it wasn't me! Unfortunately we couldn't get the tube re-inserted in time (only 20 minutes time lapse) and it lead to a the unfortunate event of the hospital trip.
He now loves school and his new teachers (Ann, Betty & Donna). I was so worried when we had to move into "pre-school" and that it would take forever to "break in" a new teacher and therapists!!! But once again, Gateway Education Ctr. has come through and we couldn't be happier!!! Drake's new teacher not only has over 20 years experience, she also use to work at the school for the deaf AND has a special needs child of her own!!! Ann and all the therapists work well together and I love their since of communication with each other and with us! I for see a long and loving relationship building as I write!!!
Later while seizures continued to get worse, we came back to Baptist Hospital for the EMU (epilepsy monitoring unit). He performed well and had several seizures while being "hooked-up"! We started on one medicine which didn't work (shocker!!!) We have since stared another and still battling the communication issues with our neurologist when things don't seem to be going well.(our on going battle)
We lost one of our GREAT nurses for Drake in September. S- had to go back to school, she's trying for her P.A. degree and we wish her the BEST!!! We have since started a new girl P- who is leaving at the end of December to go to Forsyth Tech to finish her nursing degree. We will miss her dearly, but will keep touch!!! It seems the 3 greats( Princess, Shafaq, & Pierina) we have had, all have an enormous since of ambition. We always want you girls to stay, but know you are here for bigger reasons than just to help our son. Thanks for all you girls do and we don't want any of you to lose your special talents!!! You each deserve the best!
I truly am disappointed in myself for not keeping up with this blog! I always have so much going on every week that I want to share. As I sit here, in the hospital on Christmas Eve, it all seems irrelevant. I have lost more sleep about Drake's seizures and the frustration with the neurologist. I have worried my self to death about Grant's feelings of being left out and his BIG adventures of beginning Kindergarten! He's the best big brother and I can tell God has big plans for his future!
Tomorrow Santa will come, then Santa will be gone, but we still have our family! What a lucky life I have; to share with each other and with you! Thanks for evryone's support this year and I'll try to keep you posted better, again :)
MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!!!

Project Playground Complete!!!

Well, not to change the subject, but the playground at the GCP Infant Toddler Program housed at Gateway has been completed!!! (Please see video from previous post “Drake’s Story Video” to see where the funding came from) It took almost a year of planning this project, which I knew little to nothing about. After all the regular hiccups of building anything and lots of help from Jimmy Hicks Construction,James at Guilford County and Grounds for Play, the project turned out great. I have to give props to Jimmy for all the extra hours, equipment, and phone calls from me of constant worry and yes, nagging he had to endure. (“Bless his heart!”)

What a great time!!!

3rd Annual Drake Shoot

We had such a great time at the 3rd annual DNI, we hope you did too!!!

Second Opinion Time

At this point I felt the need for a second opinion and quick! Dr Y. was able to et me in with a Nurologist in GSO. I took the first thing available. Lucky for me I was warned of his personality and was prepared with Drake’s past medical history, current medications & dosages (Thanks Nan!), even a copy of his MRI on CD.
Even though my frustration with Dr.Hi was communication and trying to be seen, Dr.Hi had the same basic things to say as Dr.H. I was impressed by his promptness, but all and all I didn’t want to change due to the fact that Drake has practically 13 doctors at BCH and they do have the capability to communicate (even if it takes a little fire under their seats every now and then) when they need to.
What it boiled down to is if Drake started having these episodes more frequently, we would need to go back into the EMU to try and figure out what was going on. That’s not exactly the news we were wanting, but I’m learning with Drake to take each day as they come, not as I hope or expect them to be.

When what to my wondering eyes did appear?

About two weeks later, he had the big one. I’m sorry it had to happen to Ms. Lori, but I was glad that someone other than me and Shane had a chance to see him go out. At my usual 2:00, I walked in the school only to find Drake not in the class room, not anything too unusual. I asked where he was and the assistant said he was at the nurse’s office with Lori. When she said it wasn’t a weight check, I thought I’d better hurry up front. Grant and I walked in to find Drake limp and not responsive. His oxygen levels had dropped to the low 70’s. (I was told he had only been in there for a couple minutes) Connie the nurse said typically babies are blue at this point and suggest I call the pediatrician. Taylor Swink cleverly took Grant with her to the classroom. Yes, at this point I was getting ready for panic, trying not to cry, I knew I might never recover. How do you react to the sight of your child lying practically lifeless for almost 20 minutes by the time we got in the car? Lori (Drake’s teacher) suggested letting her take Grant to Grandma Carole’s so he wouldn’t have to go to the ER with us. Thank-You Lori!!!
Dr. Y said I needed to get him to the ER immediately; he would call ahead and meet us there. Of course Cone was the closest (5 min.) and I went straight there. As I stood in the line to check in for what seemed like an eternity, a nurse came up to me and asked what I was there for. I said,” My child has been unconscious for 30 minutes.” I had no idea how quickly people could move and we headed for the back. They immediately started an IV and he didn’t even flinch! Taylor showed up a little bit later. I was glad to see her; the ER is not a great place to sit alone with your unconscious child. She was nice enough to move my car away from the front door and turn off my hazard lights. Shane showed up a little while after that. Only to find out after x-rays, blood work and two hours, they didn’t know what to do….. I did!!! “Stop what you are doing and take me to Brenner’s Children’s Hospital!!!” By then Dr. Y arrived, called Dr. H and then we waited for the transport unit to show. No one could argue, no one knew what else to do.
When what to my wondering eyes did appear? But a boy with bright eyes and a grin from ear to ear.
Yes, Drake came out of his, whatever it was. They decided to transport anyway and run more tests at Brenner’s. Did they find anything? NO!!! Oh yea, I was still in my bathing suit from earlier in the day when I thought I was just going to pick-up Drake from school. I think we left the hospital around 9:00p.m. (Note to self; always keep a change of clothes in car for both Mommy and kids!)

EMU

As I sit here in line to pick up my 6 year old for kindergarten, it occurs to me what an ideal time to catch up on Drake’s blog. Seems the summer took more of our time doing nothing than I realized. After several requests for an update, I’m back and ready to share more of Drake’s story.
I’ll try and give a quick catch up from where I left off. After more episodes, Dr. H set us up in the Epilepsy Monitoring Unit. It seems Drake doesn’t like his head scrubbed with sandy like abrasives to help the EEG leads connected to his head. It took approximately 45 minutes for the nurse to scrub and stick and 45 minutes of crying (Drake that is.), his head was bandaged up so the wires would hold for the duration. We were told that the stay could run about a week at the most and we’d have to wait and see if they could possibly catch one of his episodes. (The passing out, oxygen dropping, etc.)
I have to say the room is about half the size of an ordinary hospital room. The stay was uneventful until the 3rd night when Drake was so upset about bedtime. He was in the middle of a screaming fit, when out he went. Shane and I looked at each other and couldn’t quite tell if he finally went to sleep or he was having an episode. There is a button to push which is connected to his wires to try and give the doctors a pin point in time to go back and review. Guess what it showed? NOTHING! So after 4 days they let us go home with “possible breath holding spells”. I’m not even going to give all the reasons why that was not possible, but after seeing the ENT and another Neurologist, they agreed with me. (Oh yea and the stay cost a whopping $27,000 for 4 days, crazy!)
Oh yea, and it took them 3 days to get his meds brought in at the right dose and time. Thank-you God for leaving me half a brain from my teenage years so I can keep up with my children. I think he only allows us that much as adults or we would still know everything and never have children.