Monday, April 13, 2009

My how Time Flies! Is this Good or Bad?


Funny how I look back on this blog and read what I have done. It seems I get so caught up in my life now, that these days of "Baby Drake" seem so far away! It's nice to be in a different place, but it's important to try and finish (from what I can recall) of these days!
I have learned alot about blogging and will try and do better about inserting links.

with that said I will get to the next story that was a definite moment in our lives. I went to take Drake to see the G.I. doc at Brenner Children's Hospital. I remember it was a 4:00 appointment. I remember worrying about the how bad the traffics would be between Winston Salem and home. I remember sitting in the office with the doctor saying, "I hope you don't mind if I feed him while we talk".
Drake, at the time, was still on a special feeding bottle called a Haberman Feeder. He latched on as usual, with the rubbing of his cheeks, to get him stimulated enough to suck. After several minutes of the same ole conversations about little weight gain and "failure to thrive", Drake began to cough. Nothing unusual for us. It generally led into some sort of sputtering and sometime crying. I always figured his feelings were hurt that he couldn't get enough to eat and was too fed up to try again.
Dr.H asked if he did that often. My answer was of course, yes! He sent us over to take a feeding swallow test, which he had had before. The same two nurse/therapists were there. I remember talking about the latest in Scrap booking and Vera Bradley purses. It didn't take a genius to see the change of their expressions when the conversation came to a quick halt. It was nice of them to just stare at the screen and each other while trying not to say much to me. I was by myself, funny how you tell yourself "It's no big deal, what really could it be?"
I went back to the waiting room and the two girls came out to tell me I needed to wait and see the doctor and not to leave without seeing him first. I don't recall how long I sat there, but I hesitated to call Shane. Still thinking, "It's no big deal." After that it became a blur. Dr.H said something about aspirations and feeding tubes!?!?!
Dr.H said he was going to go call the surgeon to come talk with me. At that point, I realized "Now it's a BIG deal!" Time to call Shane, time to call the feeding specialist, time to call the teacher. All of who didn't think he would need such, including myself!!! They all asked the same question, "Why, for what reason?" This is the question I have asked myself since the day I found out about Drake's chromosome abnormality. I started crying. It seemed at this point I couldn't hold it together. There was barley a sole on the entire floor of the hospital. I was the only only one in the waiting room.
The reason Drake was in quick need of the G-Tube, he was aspirating his formula and the doctors were concerned of Drake getting phenomena. No one could argue with that medical reason. Seems we had a time bomb of problems ahead if we didn't take care of this a.s.a.p.
Shane walked in the same time the surgeon did. I remember Dr.P, tall still in his scrubs wearing neon orange Crocks. Both doctors and the two of us sat in the gigantic waiting room, like it was our living room. He was very mild in describing exactly what Drake was needing. I'm sure I was the umpteenth, hysterical parent he had talked to that day. He never hesitated when I asked, "what if I need some time to think about this?" His answer was, "You can have till Monday". Oh yea,did I mention, it was already Thursday?
Needless to say we scheduled the surgery and went home. All this because of a little cough in the doctors office. God's intervention? I think so!!!

4th Annual Drake Naylor Invitational!!!


Wow, I can't believe that it's here already! I'm working on so many things for Drake's school that I've forgotten to post.
The date of the event is Saturday, May 23, 2009. Please go to our exciting NEW web-site www.drakenaylorinvitational.org.
Also visit us at www.shanessportingclays.blogspot.com and find me on FB; @ Trish Lamb Naylor.

Tuesday, March 24, 2009

Make*A*Wish




How do you say "Life Altering Experience", with out it sounding corny?!?!?! We were refereed to Make*A*Wish and granted a trip to Disney World a couple months ago!!! First off I have to answer the question, "No", Drake is not terminal. My understanding was the same of the M*A*W. When the wish person called and I answered the phone, that was his first words. "Let me start by saying your child has been refer ed to our program, but is not dying!" Whew I thought, then I chuckled, because I'm sure he has said that on several occasions!
After the process of paper work began and the Christmas holiday was over, we had all the plans made for our trip. Can you imagine going on a family vacation and not having to make one single phone call, ticket plans or even having to decide where to eat? Let me add too, when you travel with a special needs child who has medical needs, there are lots of other considerations that go into play. Make*A*Wish took care of ALL the details. Oh Yea, IT WAS ALL EXPENSES PAID!!!!!!!!!!!!!!!
They arranged for a portable oxygen tank to take on the plane (Only one of it's kind allowed on plains, for the size and type breathing Drake has). They made all the arrangements for his Oxygen concentrator at the room, suction tank, extra batteries for different devices and his special bath chair. They also took care of allowing and paying for our nurse to go!!! She ended up being a very crucial part of our family being able to go and completely enjoy this trip!
M*A*W also arranged for a limo ride to the airport, handy-cap van rental in FL, accommodations (will get to that in a minute), food, tickets to Disney/Sea World and even allowed us a day at Discovery Cove (swim w/ the dolphins).
M*A*W has a hotel all their own called "Give Kids the World". I was worried there would be sick children everywhere, NO WAY!!! They have two restaurants, ice cream parlor (open 14 house a day), Arcade, Basketball courts, Merry-go-round,small child size riding train and remote-control-boat area, Putt Putt, playground, pools, Movie theater, did I mention ICE CREAM PARLOR!?!?!? (Grant only had ice cream twice a day for 6 days in a row! WHY NOT!!!) They also had events planned daily for those who wound up sick or couldn't handle the parks all day. Give Kids the World was an amazing "resort" for M*A*W children and their families. A very special place on earth with a great story of the man who started it all! Please take the time and read about this extraordinary man, Heni Landwirth!!!

Sunday, February 22, 2009

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;
View this montage created at One True Media
Drake Naylor's Episode


View this montage created at One True Media
Drake Head Drops Scene 2

View this montage created at One True Media
Drake episode 3

Wednesday, December 24, 2008

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!!!

Wednesday, October 1, 2008

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!”)