Autism Walk-a-Thon

I have made a 'group' for the walk-a-thon in Julian's honor. It takes place October 10, 2009 in Cleveland, Ohio. Even if you know you can't be apart of our group to walk that day, please take a look at the link. And remember, it's a page in progress! The group name is Julian.

http://www.walknowforautism.org/cleveland/jlgrove

Neurology Appointment

Julian had his follow up with his Neurology doctor, Dr. Abdalla Abdalla, today at Akron Children's. I've decided to post this short, to let everyone know the basics of what was said at the appointment, however, I am VERY overwhelmed right now, and feeling kind of alone, so explanations and such of medical terms and meanings will come in a later blog. Soon though, I promise. Julian will follow up with Dr. Abdalla in 4 months. Due to the lack of information I feel I obtained today with a very weighty diagnosis, I asked Ryan to make an appointment with Julian's pediatrician for Wed. Sept. 30 to go over options and be directed into the right direction.

My mother took Julian and I to his appointment today. We received the report from (results) the speech and hearing evaluation that was done on Julian a couple of weeks ago. It says that he indeed in classified into the Autism Spectrum Disorder. Basically, from what I have gathered on the internet so far today, the is on the outer sides of the spectrum, so not considered 'severely autistic'. I asked the Neurologoist 'where do we go from here?'. He said that we did need to find out why Julian has autism, what part of his brain in affected, and what kind. So, yes, MORE testing. I mentioned that the test that was ordered (muscle biopsy) at cleveland clinic could not be done because our insurance does not cover it, and he wrote a referal to the University Hospital *still not sure about that, but not seeing any options*.

I spent a lot of time researching when I got home from that appointment. Lots of sites with all kinds of information. I have found some grants that can be applied for to help obtain the test he needs (mirroarray) that we can't afford, as well as educational toys for his special needs that are crazy in price. I applied for one that I was able to apply for online, the rest have to be downloaded, printed, and mailed, so I have asked my mom (via email) to print them. I'm also going to keep looking and send some via email to my mother in law to print too for us so we can get them in. One thing I'm sure of after searching all day online is this is going to get pricey.

I'm scared for my son. I'm nervous. I'm anxious about his future. I'm worried how we are going to be the best and get the best for him, because he DESERVES it.

As far as Julian's behavior recently, he has gotten slightly more aggressive, he hits himself, routine is more important than ever, and he seems to be smarter every single day. He's the most loving child I've ever seen.

The main site that I'm looking on right now is autismspeaks.org. Check it out.

Julian's Outpatient Surgery

Yesterday, Julian had outpatient surgery for a very bad skin bridge on his penis at Akron Children's Hospital in Akron Ohio.


We arrived at the hospital at 10am. Mind you, he wasn't able to eat past 8 pm the night before, so he was NOT a happy camper. He'd lost about a pound from the previous week's weigh in at the Genetic doctor, at check in. He did fine waiting for the most part. Chaeli (younger sister) was there for him to play with, and they have all kinds of toys to play with in Surgery waiting. He did not the the pre-surgery room, where him, his dad, and I were waiting for him to be taken back to surgery (mom was with chaeli in the waiting area). By then it was 12.05, he was tired, hungry, and sick of being in a room with no toys and no where to go. By the time the nurse came to get him from that room, she said "can you come with me?" Julian shook his head yes and grabbed her hand and out the door to surgery he went. It was crazy how okay he was with it all.

The procedure was supposed to be 20 minutes, it was almost 40 min. We had began to worry. Finally the doctor came out and called us, we went up to the desk, and he told us what the delay was all about. Apparently it was a lot worse then he had orginially thought (orginally, it was going to be 5 min procedure, not counting the medicine part). He had to cut the skin bridge (from the shaft to the head) and stitch both sides ( he didn't think he was going to have to use any stitches before). We were able to go back and see him in the first post operation room, and he was NOT a happy camper. He was screaming, and the nurse was holding him trying to calm in down. I grabbed my baby up, and he was apparent, he was not handling the morphine (for pain) very well. His nose was itching him, and he had lots of IV's hooked up still. They finally (seriouslly, how long does it take to give my kid something in an IV people!) game him half a dose of benedryl for the itching. He finally calmed down, but his pulse oxygenation was low. It got down to 79, whereas normal should be 98-100. I was really worried, but no one else that it was a big deal. Ryan and I kept pretty close watch on it. He kept saying awww. I was so sad for my little baby. They released him from post op one to post op two. They didn't even check his o2 states. This bothered me. I told the nurse my concerns from post op one, and she shrugged, and said it was because he was screaming. He had been, yes, but not for a while. There was no reason, I could see, why his states should have been hanging around 89 that much. I sent Ryan up to the desk to ask if mom and chaeli would come back and they agreed. Normally, I would have wanted Julian to have alittle time first, but I wanted mom to check out Julian and tell me if she thought he was ok concerning his O 2. She came back, chaeli had fallen asleep, and I told her what was up with the oxygen. His lips did pink up, and mom, Ryan, and I watched him like a hawk. We left the hospital at 3 pm. He wasn't sent home with any meds (the doctor revoked the perscription when his breathing slowed with the morphine). Tylonol is helping for the most part, but it still hurts him, obviously, especially during diaper changes. It's pretty red down there, slight bleeding, but his stitches look good. He is playing, eating, and sleeping normally.

We are supposed to call tomorrow to set up an appointment in 2-3 weeks for follow up with Urology.

The Doctor's Show

Just wanted to thank everyone for the comments/messages on my facebook/myspace in regards to this blog for Julian. I appreciate all the thoughts and ideas!

On that note, I wrote an email to everyone on my contacts list on google, trying to get the word out on this blog for Julian. I didn't realize it, but Babette Canton from the Dr. Phil show was still on my contacts list. I got a response from her! She mentioned possibly writing to the Doctor's Show in regards to Julian. I did so this morning. Ryan and I talked about it, and decided it couldn't hurt. I'll let everyone know if/when i hear something from them.

Julian is currently coughing/ gagging/ throwing up. (Like he does about every 4-5 wks for about 10 days) I hate to see him like that. The poor child just carries around a bucket to puke in and keeps on going! He doesn't seep as well during this time for ovious reasons.

Tomorrow starts the work week, and therefor more calls for us to make. We never heard anything back from the pediatricians office, so that's our first call tomorrow. Depending on what they say, we'll call the university hospital again. We are also going to call Julian's genetic doctor again, to ask for more infor on the microarray test they want to have done. (what are they looking for?)

Eye Appointment and more

Julian went to his 6 month recheck for his eyes this afternoon (9-11-09) at the Eye Centers of Ohio in Canton, Ohio. He is not happy, they had to put in drops and stuff, but otherwise he is fine. He'll need glasses one day, but his sight isn't bad. There were no neuro symptoms (that's what they were looking for, behind his eyes), so that's a good thing.

Ryan made alot of phone calls today, and we haven't really made any progress, or so it seems. We have not heard anything concerning the mirroarray test and whether or not our insurance will cover it. I am trying to keep in mind that they did say it might be up to a week before we learn if the test will be covered or not. Another phone call was to the Cleveland Clinic. Three different specialist want him to go there for a muscle biopsy, and today we learned that this is not going to be possible. They do not take our insurance at all. No ifs ands or butts. They suggested University Hospital, so Ryan called. They need all the doctors to change their orders, since they wanted it done at Cleveland Clinic, and so we'll find out something more about that tomorrow (whether or not they will take him). I have to be honest, I feel like the second best (or third or fourth) is being offered to my son, and that REALLY bothers me. I'm trying to stay positive, and we have to do what we have to do, but I'm still frustrated. I am currently looking up the University hospital (looking into their pediatric program and the like) and will welcome any information anyone might have on them. Theres not alot to be found so far via google. We also called Julian's pediatrician, Dr. Jennifer Gigax, to see if changing the order for the muscle biopsy sounds like a good plan to her. We haven't heard anything back yet,

Introduction into Julian's Medical Journey

Today, 9-9-09, Julian had his first appointment with a Genetic doctor at Akron Children's Hospital in Akron, Ohio. I figured that I would create a blog to document his journey. My reason behind 'putting it all out there' about my child is simple. We need answers. We need help. We are stepping outside of the norm to hopefully finally obtain an answer. We are hoping to maybe learn of other children/parents who read this and think ' that sounds so familiar', or a medical professional or has ideas, or even an organization who might be able to help with answers and resources. We are doing what we feel we have to do for our child. Sitting back and waiting for the medical field to figure it out for us is not working. With that being said, I sat down to write this and realized that Julian has been through so much already. So, I am going to write an update blog, then document things as they occur in his life. I will most likely miss alot, it's been a pretty stressful day, but I hope to get the outline out on this blog, and I'll add little history stuff as it becomes neccesary later. Thanks again for reading.

Julian was a twin, and at 8 weeks and 2 days into my pregnancy with him, we lost his faternal twin. He was born at 38 weeks gestation at 5lbs 7 oz. and 18 inches long. Besides loosing more weight than his doctor would have liked and being jaundice, he was healthy. He had high apgars and was very alert.

He spent his first year of life with a constant infection, mainly ear and respirtory infections, and threw up alot. He didn't sleep much at all. His gross motor skills were delayed, but his cognitive development as always been advanced for his age. He sat up at 9 months (he also begin talking phrases then), crawled at 13 months (stopped talking completely by then), and walked at 15 months.

Julian, at almost three, just got on the graph part of the growth chart. Until then, he was always way off. He is small for his age. He had been using some signs (ASL), but he has not been doing much signing here lately. He as a bowel problem that is still undiagnosed, even after test show he as a malformed ciliac. Due to his malabsorption, he takes zinc, iron, a mulitivitamin, and drinks four 8 oz boost kids essentials 1.5 a day (each with 27 grams of fat) just to maintain weight and nutrition. He also takes 15 mg soulutab of prevacid each morning for acid reflux.

Julian has had tons of blood test, an MRI, an EEG, bowl exploration, and now a fragile x test in which we will not get the results for four months.

Other than Julian's weight issues and immune/digestive issues, his behavior symptoms are the most pronounced. I'll get into that in future blogs.

I have decided to write this blog, and keep it up as we go down this journey with our son, in hopes that we might run into someone who might be able to help. Someone who might have information, or a possible diagnosis. If someone knows something or as any ideas on what my son might have, PLEASE tell us. My email address is queennlove2005@gmail.com, my husbands is ravenwolf8301@gmail.com. Thank you for reading.

Julian will be 3 October 13th this year. As of right now, we still have no answers as to his medical condition, although every specialist he sees regularly (gastrointerologist, neurologist-Abdalla Ali Abdalla, MBBS, pediatrican, pediatric eye doctor, speech and hearing, and genetic doctor-Thaddeus Kurczynski, MD, PhD) all feel strongly that something is wrong medically.