23 July 2002

My daddy passed away due to a malignant brain tumor on 23 June 2003. He was buried in Athens Ohio his home town on 27 June 2003. Mommy tells me he went to see Jesus and I want to go too but mommy says that would make her sad and I have to stay with her and sissy. I have an appt with a surgeon about my herniated stomach on 29 July 03 at WRAMC. I also have a MRI scheduled for 15 Aug 2003. It is to see if my brain needs me on OX2 or if I can stop using it at night and to also see if my spine is fusing down causing my back to curve more and my feet to point. Other than the obvious I am great. Just got back from my Grandma Chatman's in Missouri. I played with my sister Demey on their back porch in a blow up pool. Papa Jim wanted to keep it but MiMi said take it home. I love to eat butter.....and am sucking on suckers on my own. God is working miracles and mommy is just waiting on more for me.

Our New House

We moved from 355 Sherman Ave Arnold MD to our new house on 1 Sep 2003. Demey and I have the coolest room. It is pink and mommy's is red. Good news I didn't have an MRI done like scheduled....my mommy just wasn't comfortable with them putting me to sleep if it wasn't nessecary. She had a 2nd opinion at Johns Hopkins with Dr. Leet instead of the MRI and they want me to go to Kennedy Hospital that specializes in Spina Bifida patients for a clinical approach. I went to SB clinic in Ohio but not so much in MD. Dr. Leet wrote a prescription for a Pony Gait that looks kind of like a tricycle and if I get it I can have a seat and still put weight bearing on my legs to help with bone density. I do have a hernia and I had to eat some barrium to see my stomach in Sep 2003. It didn't make me happy but mommy was happy because I ate it with my mouth and didn't aspirate....not that I have since I was really little but I still won't eat much by mouth if it has any texture...makes me gag. I still love butter and last night I ate a lot of tastes of apple spread my Aunt Holley made. We love to cook together every night. I cry if I don't get to help. I am supposed to go to a feeding clinic after my next test scheduled on the 14th of Oct at Walter Reed. My GI Doctor, Dr. Fernandez is doing a Esophascopy to look at my stomach. I have to take a little medicine by IV and they put a scope down my throat but the benefits out weigh the bad. I had an appt on 4 Oct with Dr. Poth and Endocryniologist who helps out with my HGH monitoring and she is putting me in the hospital for 2-5 days starting 13 Oct 2003 to rule on diabetes. I have had glucouse in my urine for a year and a half and it can't be explained. If it isn't one thing it is another. I went with mommy and Aunt Holley and we bought pumpkins and a carving set today and took pictures at the pumpkin patch. We are having a yard sale tomorrow....It is Aunt Holley's birthday. I had an evaluation with Special School Find in Sep and a school nurse came to my house today to get a history. I am very excited and do the happy dance cause I am going to get to go to school very soon. Mommy, Aunt Holley and Uncle Stu took me to see Monsters Inc on Ice...I only cried a little.



1 Nov 2003

I was hospitalized from 13 Oct - 18 Oct...during this stay my mommy and Aunt Holley stayed with me at Walter Reed. I do not have diabetes....It seems that I have a new problem called dumping symdrome. My food goes right in my G-tube and into my Pylorus (SP) and into my small intestines. That might be why I am so small. I don't get all the nutrients from my foods. Wonder what my medicines are doing? I am now on continuous IV pole feeds at nights and I have to eat every 2 hours with cornstarch added to keep it in my stomach. It is a pain in the neck or so my mommy says. I started having what the docs called episodes while I was in the hospital. I would eat and fall immediately in a coma like state....sometimes it was hard to arouse me. Made my mommy really scared. They did an EEG on me and induced one of these episodes....WRAMC said good news she is only asleep it is not a seizure....how is that good? I eat and fall asleep. Not normal. My mommy and aunt got me a referral to Johns Hopkins and on 13 Nov 03 I am getting a second opinion. There has to be a more normal way of life. It can't be normal to eat and fall asleep. Mommy looked on the internet and there are surgeries, medicines and someother things to try. I got a Pony Gait Trainer ordered , I am getting new AFO's cast on Friday the 7th, and I am in the process of getting a good back brace approved. Mine doesn't correct my back enough. I did get a new diamond ring out of the hospital stay. My daddy always wanted me to have one so mommy bought it when I got out. I love it and look at it alot.

I also went to see the Ortho Doctor Dr. Leet at Johns Hopkins again 6 Dec 03 and I now have some new Afo's and Dafo's (sleep Streching Braces) and a script for a wheel chair and a Kafo (knee brace). I started walking with my braces (RGO's and Walker) on 7 Dec 2003. Without any help I took a few steps in my kitchen.

I started Pre-School on 1 Dec 2003 and I wake up asking mommy to dress me and take me to school. I love it and have lots of friends. My teach is named Mrs. Jank and her helper is Mrs. Brock. I hate it when there is no school or a snow day. I beg to go to school.

1 Jan 2004

I have been to Johns Hopkins to meet with a GI doctor there Dr. Darbari and I am still eating pretty much by continuous feeds. I eat every 2 hours Pediasure with Cornstarch added and I am on a feeding pump at night. That takes care of some of the symptoms until they can figure out if I need surgery or not. I am doing ok and just waiting on answers.

I am walking more and more and I use a rolling stander at school that looks like a standing wheel chair. I take attendance to the princials office. Mommy is so very proud of me and says my daddy would have been too.

We are trying to get into a Spina Bifida program at Kennedy Kreiger Institute in Baltimore.

Demey and I got bunnies for Christmas and we named them Chocolate and Carrot. Carrot likes to lick us in the face and it tickles. I chase them around the kitchen.

6 May 2004

We went to NE to see Demey for her Birthday on 16 April 04. Mimi and Papaw Jim drove to meet us from MO. We had fun. We are counting the days till Mommy goes to get Demey on 20 May 04.

We went to the Zoo on 2 May with Darryl, Julie and David Savage. Uncle Stu and Aunt Holley went too. It was fun.

I finally have my appt with Kennedy Kreiger 7 May 04....Mommy is hoping for some answers for a change. The Spina Bifida Team there is supposed to be really good.

I am walking from the door at school to my classroom every day. It is a long way....I use my walker and KAFO. My mommy is so proud of me. I can put on my own coat and I am
very independent....I say "I do it" and "Please" all the time to get my way. Mommy says I am spoiled a bit but I don't think so.

Demey and Ashley 16 Apr 04

Ash holding Demey's horse she bought with money from birthday.

29 Sep 2004

Wow have I been busy. I started School again...My teachers are Mrs. Maloy and Mrs. Higgs. I really enjoy school but I don't want to walk so very much. Sometimes I cry but I have new friends at school.

On 3 Sep 04 my mommy's birthday we went to Mount Washington Pediatric Hospital for my first evaluation with the feeding clinic...the PEPPER team. Dr. Akintade said I needed to come back for further eval on 10 Sep. I Went home and started talking about eating with Aunt Holley. We conned mommy into buying me a Dora bowl, Blues Clue plate, Barney spoon and fork set and Dora and Boots spoon and fork set...this is all incentive to motivate me into eating. I try but I play around and this doesn't make mommy and Auntie Holley happy so they have started feeding me. I like to turn my head and say "NO". In the end I eat and count my bites out loud. I can count to 20 now.

We had our visit on 10 Sep and the team decided I would benefit from the feeding school. It is 6-8 weeks long and 5-8 hours a day depending on what I can take. I had to eat a little but I did well. The OT/Feeding therapist Ellen gave mommy some goals for me to meet and said she'd see what I could do on 28 Sep. Well on 28 Sep I blew Ellen out of the water. I had met and exceeded all the goals. I am now eating 1-2 ounces 3 times a day. I con my mommy into cans of Dora soup...(I haven't tried yet) and whatever else the cartoon people endorse. I like cartoons. I have been sticking my fingers into everything and making lots of messes with foods. I really don't know if I like to eat but I sure want to please my family. I do try hard. Ellen made me eat some grahm craker crumbs....I did it! I have a yellow chew/bite toy and play like I am a dog with Mom. Ellen said to have my mom and Aunt Holley blend up regular foods and thin them a little and start feeing me what they eat. I am also going to play a game with a Dum Dum sucker...get it from one side of my mouth to the other without touching it. I need to move my tongue more. Feeding school has a dora doll that talks that made me try so I could play with her.

I have a endoscopy to be scheduled soon with my GI Dr. Latimer....he wants to look at my perisophigial (SP) hernia and determine if it hurts me and needs surgery...Mommy is praying I don't have surgery. Other than that I am doing great. I also went to see Dr. Arabella Leet on 28 Sep and she said my walking and braces and back are stable and I am doing wonderful.

1 Oct 2004 we are going to my 2nd Baltimore Oriels Baseball game. I am excited.

Enter content here

Enter supporting content here