Julian's Muscle Biopsy and First 'Class'

So this Monday was Julian's Muscle Biopsy.  We arrived at the hospital right at 7am, and the took up right back.  Into the gown he went, and we were in a room with a TV, so that helped keep him distracted a bit....for awhile!  He wasn't happy with the nurses checking his vitals and touching him.  The surgeon came in and talked to us, and so did the Anestia Doctor.  He thought that for Julian, it would be best to have some versaid to help calm him down before they take him back.  So a nurse came in about 20 minutes before they took him back and gave the medicine to him.  It took affect in less than 5 minutes!  He couldnt stand on his own, was giggly, and wanted lots of hugs/kisses!  SO cute/funny!  When they wheeled him past where we could go, and I leaned down and gave him a hug, he laughed at me! 

Things turned around!  We went into a waiting room, and the Doctor came out and talked to us about an hour later, said everything went well, and we could see him in about an hour.  So we sat.....and ten minutes later we were paged to head back to his step down room.  We go there, and were told to wait for him, that he'd be in in a few minutes.  A nurse came and said follow her instead, so we went to Julian...appparently he was freaking out too bad for them, and they wanted us to try and calm him.  We got there, and he was SCREAMING, KICKING, and FIGHTING harder than I thought possible.  he WAS NOT happy!  This didn't stop, and so they went ahead and put us, with him, back to the step down room.  THe nurse brought him some sprite, and that didn't really make him happy either.  He wanted to go!  He kept going to our bags,  pointing at his clothes, and then the door! They checked out his vitals some, and let us go in half an hour.  He screamed the whole way to the car, but calmed down soon after we were out of the parking lot.  About an hour after we were on the road, we stopped and got some food, and he ate, and ate and ATE!  We got back in the car and he took about an hour nap.

The wound is worse than I thought.  The made an incision in his Thigh, took a sample of the muscle, and will send it off to be tested.  We won't hear anything for about a month.  He won't be able to bathe in the tub for about a week, and will need a follow up in about a week as well.  He is still limping around and in pain, we are giving him some OTC pain meds.  He is still playing, and Yesterday we started both him and his sister's potty training, and he's absorbed in that right now (WHOLE different blog there already lol!)The pics won't upload, but we have one of his wound up on FackeBook, and the others from the trip to Columbus for the procedure will, hopefully, be up soon!

On to his visit with is teacher/speech therapist today! (pic above) She came at 10 (and has now said that will be every wednesday) to watch him eat.  She wants us to starting giving him one of things, and MAKING  him point to a picture before giving him more (she's going to bring some next wednesday).  Ryan took Chaeli into her room to play (teacher asked) and I stayed in the living room with Julian and his teacher, but out of the way, and didn't interfer.  I wanted to see how he would do.  He ROCKED it!  I was so proud of my baby!  He 'played' with her, and tried to mimic the sounds she was trying to get him to say.  He 'read' the book with her and let her touch his hands to deminstrate some signs.  I was so very proud of him.  He was actually upset when it was time for her to go!  We received our copy of his IEP, and they want him to stay in these 'at home' classes until he is retested in the Spring, then we'll see. 

Juilan's IEP

This week, Julian had his evaluation from the school system here at home.  Four teachers/psychologist came out and laid out their observations from all the testing they have been doing with him and the plan to get to the goals that we have for him.  This was the final evaluation for this stage, and now therapy will start. They were all pretty nice, and Julian seemed okay with them.  Not comfortable, just okay. 

I asked if Julian would have a chance to be in a 'normal' school, and they all said yes without hesitation, so that does make me feel better.  His IEP is simply his education plan for special needs children until he can be put in 'mainstream' school.

While Ryan and I don't agree on some of what they have said, we are willing to do whatever it takes for our child.  The biggie that we don't really agree with, is that overall, they say his 'age' is 18 months, when he is actually three years old.  I think that the problem is he can't 'answer' their questions like a normal three year old and he does have autism, so it makes it difficult to 'test' him. We, obviously, agree that his social/behavioral skills need therapy and work, and are happy he is going to get getting that.  His teacher is also a speech therapist, and will be coming out to our house  every Wednesday at 10:30 for an hour.  We think that once she spends one on one time with him, and Julian gets more confortable with her, they will see where he really is.  Also, he will have an occupational therapist (for his fine motor skills) will come see him 100 minutes every month.  He will be retested in May, and if he is still has behind as they say he is, it will continue through the summer. 

We were asked to set some goals that WE'D like to see him accomplish before May, and we said that we'd like to see him saying some words, and handling 'stressful' situations better.  They had a TON more goals for each of the catagories, speech, educational, and occupational.  I'm hoping that he can even put a dent in some of those.  I want him to be pushed as long as it's healthy, so I'll def be the hovering mom over the teachers for the first couple of visits until I'm sure they aren't expecting too much from Julian, and that Julian is more at ease with his teachers. 

The next hurdle is Julian's biopsy Monday in Columbus, Ohio (three hours from our house).  The biopsy is the test for genetic causes for his autism and bowl problems and find 'answers' as to his condition.  We are headed to Columbus Sunday early afternoon (well, around 11 am) and getting Julian settled in.  There is a couple of things that have to be done at the hospital before Monday's biopsy first thing in the morning.  We should be able to head back home by Monday late afternoon!  Mom is keeping Chaeli, and the older kids will be headed back to their mom's early that day (they can't miss school), and it'll be just Julian, me, and Daddy!  They say that he'll be sore, but should be fine to resume normal activity the next day!  I'm hoping that he handles it as well as his skin bridge procedure and as well as Dylan handled his hernia a few years back.  I'll keep everyone posted! 

Autism Bloggers

Just wanted to share this site, again, that my friend Jenn shared with me.  Lots of good info, and advice and support from moms with children that have autism.  Take a look!

First Dentist Appointment

This week, Julian had his first Dentist appointment at Akron Children's hospital.  We were referred by his pediatrician because of his malabsorption, bowl malformation, and therefor the medication (iron) that he is on.  That combination usually makes for porous teeth with lots of cavities in kids.  We knew he had one cavity on the outside of one of his front teeth, but it turns out it was VERY tiny, and the iron was staining the spot and making it look scary bad.  They went ahead and filled it, because it's easier to stop it early.  He was kicking and screaming and NOT planning on being still at all, so they went ahead and filled it with silver (much quicker) instead of white filling.  It honestly looks much better than the brown the iron was making it, and you really can't tell.  They only thing that bothered me, was they didn't give him any numbing medication.  They side b/c it was only outer surface, it wasn't needed.

Julian kicked and screamed the WHOLE time.  I had to pretty much lay on him to be able to hold him down.  They went ahead and also cleaned his teeth and gave his teeth a flouride treatment.  I thought he'd be really mad when they were finally done (b/c of his fit) but when the Dentist asked for a high five on his way out the door, Julian gave  him one!

Our First Trek to Columbus

Nationwide Children's Hospital was....a mess.  The whole thing is under construction, there are NO signs or way of knowing where you are headed, and most frustrating: There are neurology 'department's' on two different levels.  Getting there was a pain, we got lost, and Julian screamed 90% of the time.  Mom took us to this appointment, and tried to help entertain Julian.  We also brought the portable DvD player that Julian got from my mother in law last month.  That only entertained him for 15 min.  He was sick and tired of being in the car for 3 hours to get there, and then when we were, we had to wait for FOUR hours in the waiting room.  He feel alsleep (Thank GOD) on the way home, another 3 hour trip.

We saw the Dr. (literally) for 1 min.  I was VERY irrataited. I took it out a bit on the Nurse, but she seemed to understand and spent 30 minutes with us.  Which I felt we deserved, since we waited 4 hours in the waiting room, and had NO time with the Doctor.  The Muscle Biopsy is scheduled for Dec. 7, a Monday.  We are going to head down the day before and stay in their 'Welcome' Center, because Julian has to be AT the hospital that morning at 6 AM. 

Here are some pictures that I managed to get when he wasn't screaming. Mom was able to get better ones and I'll post them later.

Julian's Educational Evaluation

     Julian had a teacher from the public school system come out today.  All they did today was evaluate his fine motor skills.  He had a good attention span today (yeh for minor victories!) and he did the shape puzzle without a hitch.  He 'colored', but didn't do the lines and circles that she wanted him to.  I've been working with him on this for a couple months, and I haven't been able to get him to do it either.  He did surprise me with the middle activity.  She had a few small (very small) wooden squares with a whole in the middle that she wanted him to put onto the string, and move them all the way down to the knot at the bottom.  HE DID IT! and then wanted more squares to put on there, so she gave him the bigger squares with wholes to put on.  He scored just below 'average', so she labeled him 'borderline' as far as fine motor skills are concerned. 
      The speech Therapist came out Friday.  This was.....difficult.  By this point, Julian was sick and tired of being off routine and tired of being questioned, in my opinion.  She was okay, but not very understanding.  Julian had to be bribed just to come in the room with her.  I did what I always say, and I used food.  I let him pick whatever he wanted out of the fridge to answer some questions.  He picked yogurt lol.  That's my healthy kid! So, he came in the living room and sat down at the table and answered three of four pages in the book of 'where is the cat.  Point to the dog.  Where are the shoes." Then she asked him where all his body parts are, and I told her most of them, you'll have to say the actual scientific names, because that's how he knows them, so she did and he answered them all.  Then she had him play with the blocks and did some test there, and he did fine.  Then it was back to her picture book for a little more complicated questions.  She didn't realize that I knew exactly what kind of test she was running, and some of her answers to Ryan on this irritated me a bit.  They were questions about a few pages of 'big' pictures, with something going on in them and he was supposed to point out parts of it, such as the picture of the car and the dog chasing it and and question was 'where is the door of the car? Where is the tail on the dog?' By this point he was done.  He wasn't even paying attention, he was still playing with the blocks.  She asked me if I thought he knew this stuff, and I said of course, we do this all the time in his Highlights High Five magazine.  She said, no, I'm looking for something specific.  I said, I know how you have to word this section.  I work with him at least three times a week with this very thing.  He knows it.  Her position was, he didn't do it and wasn't interested, so she had to mark him there.  She didn't tell me a 'score' for this section, but instead said that after Monday's appointment with the psychologist, they will compile a report and make an appointment to come out and go over it.  Then it was talking about his school.  
     They said, again, that Mineral city was full, so he'd HAVE to go to Starlite.  I said, 'Mam, I hate to sound bitchy, I don't know another word for it, I'm sorry, but he doesn't HAVE to go anywhere.  Miner city isn't even an option, our four year old goes to that one, and they are awesome but we've called and they DO NOT have special education teachers with experience with Autistic children.  His doctor wants him in Dover South.' She was, needless to say, irritated with me, but showed so minimally.  She said we'd discuss it further at the report meeting.  So, that was Friday's appointment.
     The psychologist came out yesterday (Monday) and that meeting went pretty well.  He was a nice older man, so Julian actually took to him better, I think because he wasn't so over bearing.  Instead of 'testing' Julian, he played games and actually TALKED to him.  Most of this appointment was the Dr. talking to us, and Julian playing with his cars in the room.  The Doctor also watched him interact with his sister, and asked a lot about how he interacts with his older siblings.  He wants to see how he interacts with Dylan especially, next time he comes out.  He said, his goal is to get the entire team together, write up Julian's whole report, and come back out before Thanksgiving, so that we can start with a teacher coming out to the home (until we work out Dover South), and Julian can start getting used to them.  Julian was having a 'good day', so it went smoothly all the way around.

     Also next week, Julian has that pre-muscle biopsy that I've been talking about in Columbus at Nationwide Children's Hospital.  We'll meet the doctor that will be preforming the biopsy and talking about what will happen and what we are looking for at the biopsy.  It's three hours from our house, BUT they will take him, they are just for pediatrics, AND that's where his pediatrician did her residency and that was her next choice for him.  I will write about this appointment in a seperate blog, to make it a bit easier.

Julian Turns 3!

In two days, Julian Michael will be Three! It's so hard to believe.

With my Grand-fathers' passing, I haven't had the time to blog about Julian's last two appointments, one with the neurologist, Dr. Abdalla, and one with his pediatrician, Dr. Gigax.

At the neurologist, we received the results from his speech and hearing evaluation (Well, he didn't stay for the 'hearing' portion, he had a meltdown). He was diagnosed as Autistic, outer spectrum. We really didn't get alot more than that. I asked 'where do we go from here?" The doctor was adamit that we have to find out WHY. I'm a little torn. On one hand, this means more test and specialist for Julian, on the other, I'm not the 'accept and ignore' type of mom. I do want to know WHY. And let's be honest here, Julian is so used to most of this stuff.....he takes it in stride. Kids are truly adaptable, even Julian! This is is normal, and he's okay with it most of the time.

I still felt that we didn't really get any ANSWERS (yes, I'd still like to go into an office and get my WHAT WHEN WHY) I had Ryan call Dr. Gigax's office and make a pre-well check visit for Julian, hoping that we'd get a least a 'do-this-next or call-here from her, before his well-check (it's actually this wednesday). We went and talked to her, for TWO HOURS. She read through the results that Dr. Abdalla had us bring to her (since brining them would be quicker than him mailing them). She says that while technically, he scored borderline, thus the outer spectrum autism disorder discovery, she still feels he doesn't have Autism. She feels even stronger now, though with the results, that he has a genetic disorder/condition causing these symptoms, so her reccomendation was to continue to search for WHY. She gave me another hospital option, one about 3 hours from her called Northwestrn Children Hospital (she actually did her residency there) since I wasn't really comfortable with the University Hospital option AND they were not calling us back (STILL). We have a call into the Neurologist, to change the refferal, then they are going to make us an appointment for Julian there, to get a second opinion from their Neurologist, finally get that muscle biopsy, and schdual most test. I'll keep everyone up to date on that as we get more information. I talked to Dr. Gigax also about some of these 'diet' changes that are said to benefit children with Autism. Right now, we are choosing NOT to change Julian's diet, as all of his doctors feel that it's a genetic cause. She also felt that most of those treatments help mostly the bowl problems in these children, and we don't know WHAT Julian's bowl issues are, only that he has them. He goes back to her on Wednesday, and I haven't decided if I'm going to presure that talking about that option more then, or wait until we see the new doctors. Our friend Jenn had also mentioned the vaccines and wondered if I thought that could be the cause. We brought this up, shortly, with the doctor. She actually feels that we should push this gentic cause thing, and if we don't get anywhere, look into it. The thing is, Julian only received a couple boosters (what people are blaiming the Autism cause on mostly are the boosters, out of those accusing the vaccines) because he had such sever reactions to the original vaccines. We asked why the diagnosis if they didn't think that was really what was wrong. She explained that while they feel he has a cause with Autism as a symptom, the fact his he HAS the symptoms, and needs the resources (speech/behavioral thearpy). So for right now, this is how it needs to be, for Julian. I also asked if we could remove that diagnosis in the future if we find out the Cause, and she said absolutly, so I'm comfortable with that. Whatever it takes.

So we are still looking and searching.

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.