Updates, Dec. 2010

The new GI wanted us to try removing prevacid, his anti acid, from his medicine routine because a side effect of the drug is constipation.  We tried this, and had to call the GI because he was still in pain.  So right now she has us trying nexxum.  It's a pain in the butt to give him, but he's beginning to take it a bit easier.  It does seem as if it is working though.  He's barely complaining about abdominal pain at all now, and has a couple days where he's eaten really well.

He's had another abdominal XRay since the last post, and is still on the laxative Miralax daily.  I received a message from the doctor's office Friday afternoon to give them a call Monday for test results so i will be doing that.  We are also supposed to go back in six weeks from last time we were there so I am going to try and make an appointment for that too, unless of course they want us in sooner.  He is in pull ups all the time now because he basically poops all of the time, but he still pees in the potty. 

His speech teacher has made two more cards for his GoTalk, and he is loving that.  He's new favorite button is 'color' lol.  His sister Chaeli has started speech classes with him, and right now they are sharing the time, and still listening to their teacher, so they are going to continue to try and keep it that way.  Julian's doing well with his teacher as well.

As always, he's a happy child.  He's obsessed with Toy Story 2 and 3 right now, is a bundle of energy, and loves to color.  He's sweet, and smiles all the time.  It continues to amaze me how optimistic his attitude is, considering everything he goes through medical wise.  I'm inspired b him every day. 

Julian's New GI

Julian's previous GI was Emory Collins, out of Akron, Ohio.  We had been seeing him for 2 1/2 years. During that time, Julian has undergone 2 endoscopys and colonoscopys.  We never saw pathology reports, but after the second one, we were given the diagnosis of Celiac Disease for Julian, and told it was a result of inflammation shown during the test.  We've been going every 3-6 months during the time Julian has been under his care.  Ryan and I both have been thinking about going to a new GI, because we've felt that ever time we would go Julian would get weighed, measured, and the doctor would come in and tell us nothing new and come back in a few months.  Seriously.

So, Thursday, Julian had an appointment with a new GI at Akron Children's Hospital.  She was wonderful, and both Ryan and I really liked her!  We spent the entire afternoon there (okay, admittingly, we were stressed and tired, as were the kids) and got a lot of information.  She gave us the pathology reports from BOTH of Julian's endoscopy and cononoscopys.  She told us that there was nothing definite from the reports to suggest or not suggest Celiac Disease.  She is running a genetic test for CD.  If it's positive, then he has it, if not, he doesn't.  We'd never been told there was this kind of test for it!  She's also running thyroid test, and wants me to collect a stool sample (still working on that one), and checked for blood in Julian's colon.  She ordered an xray to check for impaction, because by manual exam she felt areas that appeared to be impaction. She took Julian off of his prevacid for acid reflux, because his endoscopys showed no signs of it, and he might have grown out if it.  If not, she will put him back on it.  She's also prescribed a laxative to try and help regulate him while we are waiting for the blood test. The office ended up calling in another, stronger and immediant laxative yesterday after the xray showed signs of impaction. He still has not had an actual bowl movement, and they had said that if he did not by the end of today, to call their emergency after hours line.  I will be doing that soon, if he still hasn't.  So, I'm worried about that.

BUT, thankful we have finally found a GI that seems like she's proactive, productive, and she listened very well!  She spent alot of time with us, was patient (our children were being a bit rowdy), and very informative.

Julian has a neurological exam and evaluation Dec. 29 at Cleveland Clinic.  It's overnight.  I'm hoping that we get some actual results from that, something that can actually help Julian.

I'll continue to keep everyone up to date on Julian! Thanks for reading!

Julian's Go Talk 20+

Julian just received this  Go Talk 20+ courtesy of the Lions Club in our area!  We just got it yesterday, but already he is using it for many 'wants' and 'needs'.  It's very simple and easy to use.  I am so grateful they donated this to Julian!  He seems to like it, and already it has helped reduce a lot of frustration from Julian.  (As I see it).  So happy!

As of October 13th....

Julian is 4 Years Old!!! 

 I'm not sure how I feel about it!  My baby boy! I will be blogging more on my page about it, but I wanted the fact that Julian will be FOUR down on his blog too!

Today Julian had speech here at home.  He was so excited when I said his speech teacher was coming, but a few minutes after she was here, he was not having it. A very 'autistic' day.  She did tell me that she is pretty sure Julian just can't get words out.  It's a mental brain block, in her opinion, that with lots of guided practice and encouragement, he might be able to overcome.  I forgot what she called it (he was SCREAMING lol), but it makes since the way she was explaining it.  She left early because she didn't want to stay if Julian wasn't engaged and she thought her staying would just irritate him more, but she said she'll make up the time.  

Julian: almost 4

I realize that I have not been updating Julian's blog, and I'm very sorry to everyone who cares and follows.  This last 7 months have been very hard on me, and I guess I just let this blog go by the wayside. 

Julian is under care of a physician at Cleveland Clinic, Dr. Cohen.  Both Ryan and I really like him.  Right now it does seem like we are at a stand still there. Julian has had a repeat EEG, that showed some slower waves at the upperback part of his brain, which is considered 'normal'.  He does have two abnormal chromosomes, one of which I have as well (they did studies on both Ryan and I of our DNA).  They just took my blood again (Cleveland Clinic is trying to redo somethings 'their' way and some extra tests), and we should be getting a call this coming Monday to make a follow up appointment for that. 

Julian just started his 'new school year'.  He has a speech therapist and a teacher.  His teacher is most likely going to have to see Ryan at his moms, because of my classes.  His speech therapist will see him at my house.  The speech therapist (Sue) came yesterday, and I really liked her, as did the kids.  Penny, the teacher, seemed really nice when I talked to her for quite sometime today.  I don't really like that I'm not going to be there, but for this semester it will have to work.  She's going to keep me in the loop though, and I'm going to try and relay everything here for you all too.

Julian has a slew of specialist appointments coming up; from an eye appointment, his geneticist, and his new gastroenterologist.  We have a 'new' one because 1.) Both Ryan and I really didn't like that each appointment was very short and always the same thing and 2.) an appointment was missed and they felt they had to 'review' whether or not they'd see Julian again.  So, during an appointment with his regular pediatrician, I asked for another referral to a new gastroenterologist, and made an appointment.  We'll see how that goes.  Before the new doctor though, Julian had the repeat endoscopy and colonoscopy, and was then diagnosed with Celiac Disease (as my mother suggested 2 years ago).  I'm not so sure about that diagnosis, mainly because the treatment is gluten free, and that seems to make him worse.  Since everyone and all the research shows that that lifestyle is the only help, it doesn't seem to me like that's what he has.  It's very frustrating. 

As far as behavior goes, Julian seems to be more aware that he can't communicate with us.  He is trying more as far as gestures, but that seems to frustrate him more.  The new speech therapist is going to try and get him a speech device, and that would be wonderful!  I can't wait!  I hope it goes through and makes the difference that I hope it does!  Julian has also been a little more irritable and more 'autistic' tendencies.  I am not sure if it has to do with his symptoms and condition, or if it is response to all of 'this'.  'This' meaning the way our lives are now and all the uncertainty.  I try to keep it all away from him, and I'm sure his dad (Ryan) does to, but I am also not naive enough to suggest he doesn't know.  I know he does, as does his sister.  They miss their family.  Julian especially I think, because he wants to look at his older sister and brother's pictures more often and seems to want me to talk about them more for the last 3months or so. 

Julian hasn't been eating very well.  I swear he lives on pepporonni and cheese and fruits some days.  He complains that his stomach hurts all the time, and he is now saying his left eye hurts all the time (pointing to it and saying 'aww' is what I mean by saying something hurts).

We go to the YMCA, and Julian LOVES it.  He swims with his swimmers all by himself, and hardly wants my help at all.  He loves the play room, and the 'Adventure Land' that they have.  My mom took him to Chuck E. Cheese (and his sister of course!) and now he wants to go all the time.  He LOVED it.  I had to help him into the play area at least 10 times ( I was tired!) and he loved all the new games they have there.  I'm hoping to have a joint party for him and his sister for them turning 4 and 3 there. 

All in all, Julian is okay.  He  hasn't been sick (more than a cold or so) in a very long time!  That's good!  

Inconclusive

So, last week, Julian had a gastrointerologist and a neurologist appointment.  That day, both Ryan and I had blood drawn to undergo the same blood test Julian had, so that our chromosomes will be looked at to see if Julian got is replications and deletions from us, or if they are malformations unique to him.

So, at the first appointment, the frustration began all over again.  Basically, Dr. Collins is thinking that the reduced gluten diet that Ryan and I had been doing with Julian since December was maybe what was to credit for the growth that Julian has experienced, and he wants to to do a strict gluten diet for four months until his next appointment there, and after three of them, have Julian's vitamin and mineral levels checked to see if he is absorbing better so that he can go off those medications.  If he is 'back to normal' then we'll have to continue the diet.  If not, then the diet doesn't work.  He might have the procedures repeated that he had initially for Dr. Collins.  We are finding that we weren't doing as good as we thought on the 'reduced' gluten diet, and it's tough so far.  We are both trying though, and I'm hoping that whether or not this diet works, we get answers.  Julian was 29 lbs at that appoint, so about 10% on the chart, and height wise, he was 50%.

At the neurologist, Dr. Abdalla, we got really aggravated!  Apparently, he does have two different sections of his chromosomes that point to two different disorders, but they arn't 'wrong' enough to exactly diagnosis him with the disorders.  One was an immune disfunction, and one was a muscle one.  So no new diagnosis, just more inconclusive findings.  Once again, Dr. Abdalla, really wants Julian to be seen at the Cleveland Clinic, and gave us another referal.  This time, because Julian is on a new disability insurance, he thought Julian could get in.  Ryan called that day, and we heard back today, and sure enough, Julian has an appointment the first week of June there!  This is a minor victory, we've been trying to get him in for over a year!  Basically, Dr. Abdalla doesn't have any more test he expects will help lead us to an answer, and he thinks that the Doctor at the Cleveland Clinic will have answers.  I am really hoping.  It's getting so aggravating to always have test show 'something' but not enough to be 'conclusive'.  What does that mean?

Julian has been going to the YMCA with his sister and I, and does great in his gym class.  He really tries, and only throws a fit here and there.  In the pool, he swims with arm floats basically by himself!  He does so well.  In his 'class', he's doing better, and really tries with beginning sounds.  He says 'no' all the time, and has started saying 'daddy'.  Julian's IEP meeting will be in May at the local school, and it's been suggested that we continue speech through the summer, since he's making such great strides there. 

I'll update when we know more!

April 2010

Just a quick note on here for Julian.  This week was his 'Spring Break' from his class, so he didn't have one today.  He was some kind of upset!  I thought that if I didn't mention it, he wouldn't know....well, about 10:30am (30 min after when she would have been here) he went and got his communication board, his messy tray, chalk board and chalk, and pointed to the door.  I knew then I'd better explain.  He wasn't a happy camper!  But it did make me feel good that he likes her so much! 

At the end of this month, Julian has specialist appointments with his gastroenterologist and his neurologist.  I'm hoping and scared that we will most likely be getting the test results from the mircoarray test that was done a little over a month ago.  We still have not received any results concerning the muscle biopsy, and that's frustrating.  He's scare is 'healed', but still pretty red.  Chaeli points to it every time they are in the bath and says 'juldge (how she says 'julz') boo boo', it's cute. 

The month of March has been very difficult, but the kids are doing okay.  Julian's dad and I are both concerned (I believe I can say that) that Julian lost weight at this months' WIC appointment from last time he was weighed at his pediatricians'.  He was down to 29 lbs, fully clothed (with a thick hoodie), everything except shoes.  We talked about it and decided against making another pediatrician appointment at this time, since he has two specialist appointments coming up and will be weighed then.  However, I feel that if he hasn't begun to regains some of the weight he's lost, I will have to reconsider that.  He's not been eating as much for me, and it worries me.  I know it seems little, but he's tiny to begin with.  He also has grown an inch since he was last measured. 

He has been making 'projects' in his classes, which is awesome, because he actually lets the teacher put his finger in paint, or glue, or whatever they are using, and press it to the paper.  You can look at him and tell he's not really happy about it, but he does it and waits until its' done before wanting to clean his fingers!  He still refuses to use his whole hand most times, but it's progress.  She calls this his  desensitifacation work.  He's also improving even more with making noises and sounds.  He doesn't do it as well when Mrs.Kathy isn't here, but he tries for me sometimes.  I am trying to use the 'Julian, I need your eyes' phrase and sound out things more.  It's hard when I'm running after both of them, but I get in a few good mini lessons a day.

Julian is getting slightly better with the potty...some days.  It's still a struggle, although I think he's doing better for his dad.  What could I be doing wrong?  Everything I've read says not to make him sit there forever, even though I KNOW he's trying to poop, so I let him off the potty and ten minutes later he's filled his pants! So the next time I make him sit there longer, and I sit in there with him and try to distract him, and that just gets me a fit from him.  I guess he'll do it in his own time.

My current biggie (well, behavior wise) is getting Julian to help pick up his toys!  I just feel that he is 3, and I realize he's special needs, but his teacher thinks that he understands more than I give him credit for sometimes, and I should make him.  I'm having a hard time doing that right now, and really just want to make things 'easier' on him, and I KNOW that's not going to be good in the long run.  I finally got him to pick up a FEW toys in his sister's room this morning, and I told him that before bed tonight, we would finish picking up before bath time.  Mrs. Kathy thinks that giving him, first this, then that's, will help.  We'll have to see!

On another note, next week we will be getting into the YMCA, and I'm hoping to check out a class for each Julian and Chaeli.  It depends on how much extra it is of course, but I think getting them into something that might take there minds off of home being different might help.  Something fun, and something healthy! I am considering tumbling for Julian and Ballet for Chaeli, but we'll see. 

I will post on the appointments at the end of the month!

Microarry Testing and Updates

A few months back, I was writing on here for my son how he needed this really expensive test, and our insurance wouldn't cover it.  Well......

A special grant came through about 3 weeks ago, and he has received this special, simple, blood test.  We should have the results in about six weeks.  I'm a little irritated for my son's sake that this couldn't be accomplished before the invasive muscle biopsy, which is JUST now healing and was done the beggining of December, BUT maybe something will come up in one of the results that will be able to help us help Julian in a more effective and productive manner.  The biopsy results will be up to six months from about the First of Feb.  and the Microarry should be in about four more weeks. 

Just is starting to say beggining sounds with his Teacher Mrs. Kathy on Wednesdays!  I'm so excited!  He's even letting her put finger paint on his pointer finger and he taps it on the shapes he's brought and made TWO pigs on TWO different weeks!  For Julian, this is AMAZING!  HE NEVER would have wanted to get dirty before!  She's definatly helping to desensitive him when it comes to his hangs being 'icky' and that's a good thing!  One more step to him hopefully being in a 'regular' school one day! 

I think it's really easy to underestimate what Julian goes through on the daily basis, because he does have 'normal' days sometimes, minus the talking.  BUT, he's at the age now where I can tell that he knows that he's not like his siblings, and I honestly think that makes him sad.  I'm hoping that we can figure out what is going on, so he and we can move on and hopefully help him better! 

Potty training is still rough, but this last week has brought some changes for him, so I'm not really 'counting' it.  He did poop in the potty for the first time Thursday, and he does over all have less pee accidents.  We are keeping hanging in there. 

He was only REALLY sick a couple of times this winter season, which is a major improvement, and one we are really thankful for! 

He is due all of his follow ups with all of his specialist, so I will update when those start happening, hopefully sooner rather than later!

Thanks again to everyone who follows Julian's Journey! 

So far in 2010

Julian is still working on potty training. It's a process!

Julian LOVES his teacher, Mrs. Kathy.  He does really well with her!  He lets her touch his mouth to help him form shapes to make sounds (autistic children don't usually like this, and he really didn't either, but he lets her now).  He sits for pretty much the whole hour with her on our living room floor playing games, 'singing' songs, 'reading' books, and things like that.  He does his 'picture/communication' book well with her, and we are going to have to push it more when she's not here, because it really does help.  Some of his pictures have magnets and are on our fridge, so instead of throwing a fit at the fridge, he can point or bring us the picture of what he wants.  This really does work! 

The home communication book is still a work in progress.  It's hard because I don't think I'm creative AT ALL and at the end of a long day, the last thing I want to do is think, but Ryan and I have realized that we HAVE to, for our son.  So, that's the plan this week, to work on Julian's book.  I've got the basics done, and his teacher has printed off tons of pictures for us, and I've cut them out already.  I just have to put velcro on the backs and we have to organize the book.

Julian was pretty sick last week, with the flu, and now he has a cold, but this is the FIRST time this season that he has been sick, and that is AMAZING!  He, before, we be sick with every little thing!  He did get it a worse than Chaeli and Dylan, but it went away pretty fast.  The cold has hit the whole house, not just Julian.  He is still on his immune vitamins and immune juice and I REALLY think it has helped.  Really.  It's just a miracle he has not been sick every week like last year!  With not being sick all the time, he's maintaining his weight so much better, and is still on the weight chart, about 10%, and staying there. We're so happy about this!  He still takes his boost, four to five 8 0z containers a day. 

Julian's occupational therapist only comes once a month, and she was here Jan. 6.  While she was here, she said that the old game 'perfection' was awesome for building his pincer grasp and fine motor skills in general and while shopping with a friend in Canton, I was able to find it for about 50 cents!  I was so excited.  We don't turn it on right now, because the time freaks Julian out, but he practices using the little sticks to put the shapes in over and over! 

Since working with his teacher, Julian will say 'nah' for No, while shaking his head back and forth.  This is AWESOME, because now we know when he means NO!  I know this seems little, but it's been so much help asking him things.  We have heard other 'sounds' but nothing that we can put our finger on, but even this is progress in the right direction!  He's only had a few classes and we already see great strides.  Julian will also 'take turns' during 'perfection', and this is GREAT!  

That's about it for Julian right now.