Julian's Explanation

Julian is 5 Years Old Today!

Today, five years ago, my little miracle baby was born! I'm so proud that with everything he has gone through, he is still a happy, persistant, wonderful, and loving child!  I love my baby boy!

Swallow Study

Today Julian had a swallow study done at Akron Children's Hospital.  

Remember this is our second attempt at this Xray.  The first time, daddy took him back and he wasn't having any of it.  They sent us home after only trying ten minutes that time.

This time, Julian was in an awesome mood (at the point of the day that we were getting the study done anyway lol) and he did really well.  They had him swallow this pudding (he wasn't having that.  Not a big fan of the pudding texture), then a cookie, and two drinks.  He really was amazed at watching the Xray of himself swallowing.  He'd have sat there all day if they would have let him.  

All looked good, so they are moving us on to a feeding team there.  

Back up a couple weeks.... He's been loosing weight so we are back to doing weigh ins every two weeks with his primary pediatrician.  He's at 31 lbs now (gained a few ounces this week).  

10% on the Weight Chart....Then NOT

Today, Julian had a Gastroenterologist appointment at Akron Children's hospital.

For the last year or so Julian has been slowly gaining weight, and growing tall fast (while maintaining his weight).  Today he weighed in two pounds lighter than 4 months ago, and in the past 6 months he has grown almost 3 inches taller.  The GI is a little concerned, only because 'typical' almost five year olds never really loose weight.  Especially when they are getting so much taller.  Two pounds doesn't seem like a lot but when you weight 33 lbs, it's more than you'd think.  So, he wants us to see Dr. Gigax (primary care) every two weeks again for weight checks.  The winter is coming, Julian just started school (today!), and he already has a compromised immune system.  He can't really afford to loose weight.

The GI ordered a swallow study and a meeting (again) with the feeding team at Akron Children's Hospital.  More about that when they call us to set up that appointment.

Julian did awesome (as did Chaeli! ) at school today!  Yay for my big kids!

Julian has also continued to make more sounds, and therefore TRY more sounds, with his speech therapist at Mercy Medical Center.

That's it for this week!

WORDS!

Bad news first:  Still no 'real' diagnosis, although Autism as basically been pulled off the chart and a general diagnosis put in its place.  What it means?  They STILL don't know.  He's also had another ear infection, after almost a two year hiatus.

Great news next!  We've put Julian in at Mercy Therapy center in New Philadelphia, Ohio.  His occupation therapist there is fabulous, don't get me wrong.  However, his speech therapist there is AWESOME.  Both Ryan and I LOVE her for what progress she's made with Julian  TONS of new sounds, and major effort from him ALL the time to try new words.  AWESOME!!!!!!  She's not exactly the 'nicest' person.  I thought that was just me, because she's very pretty (go ahead, laugh), but Ryan asked me the day he went back with them if I thought she was, well you know.  And I agreed and told him I thought it was just me.  But Julian likes her, and is doing so well.  We are keeping him at this facility for therapy even after school starts.  In FIVE days!!!!  Preschool, here we come!

Week of St. Patty's Day 2011

So, this week, I had to take Julian to his primary care pediatrician, Dr. Jennifer Gigax.  He's on antibiotics for a sinus and an ear infection.  Otherwise he's fine, just a little more tired than usual.

The kid's class this week went well.  Julian is learning mmmmm eeee for the world me, ccccaaa  awwww for cow, and a few others like that, and learning to use them to explain what he wants.  Very cool!  I love seeing his progress, and how happy he is with himself.  He's also picking up his colors very quickly, and learning to count to five.  It's slow but steady.  I'm proud of my baby boy!  He's doing well, and Ryan and I are both pushing him to use the sounds he does know as much as possible.

Today, he had an appointment with his Neurologist at Akron Children's Hospital, Dr. Abdalla.  He is hesitant to do anything until the mitochondrial specialist, now in the the same office (Dr. Bruce Cohen previously from Cleveland Clinic) see's Julian again.  This appointment has been planned for next month.

Ryan and I took both Julian and Chaeli to Akron Zoo today!  They both had a great time.  Pictures on my personal blog!

Julian is currently in an indoor soccer league at the YMCA and is doing really well.  He gets sensory overload about 2/3 of the way through and goes off by himself, but no fits or anything like that ! Videos of Julian in action at My YouTube Channel.

(Chaeli is taking Cheerleading at the YMCA)

Medical stuff:

The GI says that Julian's last blood work showed that his iron was 'normal' and wants to see how he does without an iron supplement for three weeks.  Then we'll check his levels again and see where to go from there.  This bothers me for many reasons.  For over three years he's needed this supplement, and even with it, his levels were never high enough to be called 'normal'.  But, we are trying these three weeks.

Julian's had a bit of a cold, but nothing major.  He's managed not to get really sick in over a year!  That's awesome considering he is still considered immino suppressed.  However, this cold has lingered, he's having off and on fevers, and feeling blah.  Plus, he's not been eating-even more than normal.  I made him an appointment with his primary tomorrow morning.  Thursdays he has his neurologists' appointment.  His speech therapists wants us to go ahead and talk about lining up behavioral, speech, occupational, and nutrition therapists for this summer to prepare him for school this fall.

If I am unable to move into the school district that will be the best for him and his special needs, he'll need to enroll where we are now (who has already said that she can't handle him), so we have an appointment the following Thursday to talk to that school.

Julian is making huge strides with sounds! He is combining two different sounds to form a word, although right now it still sounds like two separate words.  We are getting there though!

Love my babies!

Good News

We take minor victories where we can.

Today, Julian's last abdominal x ray (taken Tuesday), and he isn't constipated any longer!  He is to still be on Miralax, the laxative, but at half the amount.

He is beginning to combine sounds!  He says off and two, by breaking the sounds into two different 'words'.  Its major progress! Yay!!!! We love our baby boy!

No break for our baby.

I am really liking the new GI.  But I really really wish my child could catch a break.  Since the first appointment with Tracy (new GI), he has formed another abdominal blockage (discovered at last week's appointment).  He's on a clean out system right now of laxatives he is on, and will remain on until further notice.  After he was taken off of the prevacid at the first appointment, his abdominal pain persisted, so he was put on nexxum, which as worked wonderful!  He's pain is down, I'd say, more than 75%.

He is still on his Iron, Mulit. vit. with flouride, Zinc, and now his Nexxum (acid reflux med.), probiotics (helps digestion) and Miralax (laxative).

I'm worried.  How does one form another bowel blockage while on laxatives?  I am to manually feel his abdomen every day and we are to continue to monitor his poop closely.

While at last week's appointment though, we were able to talk to a nutritionist.  She suggested a way to make 'homemade boost' for when Julian wants more than four boost a day (all he is prescribed for insurance issues).  Somedays, he drinks four.  This way, the extra two a day can be as follows:
2 Tablespoons Heavy cream.
7 oz Whole milk
1 Serving of carnation instant breakfast.

Julian is NOT a huge fan of this alternative.  She also had a couple other tips, like stick butter has more fat than tub butter, but otherwise, it was all tips we've been doing.  Julian is maintaing at about 10% on the weight chart though, but he is at 50% on height.  Which shows he is really underweight, and not growing as other's his age are 'supposed to'.

Also about a week ago we had a neurologist appointment at Cleveland Clinic.  We'd been told the week before that Dr. Bruce Cohen, who we'd tried so hard to be able to see in the first place, was leaving but we were not told to where.  We drove all the way to CC to have an 'inital' appointment with his replacement.  We did get some good advice from him though.  It was suggested, that we had not considered; Feeding therapy, extra speech therapy, behavioral therapy, and proibotics (which the GI prescribed after I mentioned) However, we were told where Cohen moved to.......Drumroll......Akron Children's hospital!  Woohoo.  We are waiting for a phone call from them when Julian's name comes up on their list.  Apparently, other parents heard this news before we did, and Cohen's first actual day there wasn't until this past Monday.  Still good news, less of a drive, and where all of his other specialists are.

Julian's speech classes are going well.  Chaeli, as of today, is officially seeing both is teacher and speech therapist.  He makes more sounds and tries so hard, and is making progress.

The fact that he HAS to be in school this coming fall is stressing me out.  We are going to have to find a way to get him into Dover South school district, a mainstream public school that will take him, but also provide a teach that goes to class with him.  It's also a very good school, and Chaeli would get a good education and foundation there too.

Julian is on an obsession of Toy Story (all three movies) and most recently, Shrek movies.  He still loves his Mr. Potato head.

I try to consider how much he goes through, and how well he behaves, considering.  He's smart, sweet, and so very kind hearted!

I personally think that both he and his sister like it better when Ryan and are are together with them, mainly for appointments.  They both seem to act out more recently.  Just something I've noticed, and a couple friends.  My mom is starting to see it too.

Julian is starting to come up with his own 'signs' for trying to get us to figure out what he's trying to say.  It's so cute.  Like, he'll act like his steering a steering wheel to indicate he wants a car, or his car blanket. Or he acts like he has wings to indicate he wants buzz or to watch Toy Story.

He's loosing interest in his Go Talk.  Goal this week: to make it more 'available' to him this week, and see how that helps.