Genetics Appt. No RSS & Diabetes?

Made it to the Genetic's appt.  We haven't seen them in 2 years.  Last time we saw them, they said 2 years unless something changed.  I made a 1 year appointment anyway - and ended up canceling it.  Then I made one earlier this year, and ended up missing it because someone was sick.  So I'm glad that we made it today.

Here is Nathan and Noah in the waiting room.

So the appointment went well - and wasn't EXACTLY what I had expected.

So Noah went first.  Dr. G was rather impressed with him and his progress.   He says that Noah's muscle issues are due to his MT16 because his brain wasn't formed right in utero - it formed different - and because of that his brain isn't communicating with his muscles correctly.  So this is something that he's going to have to deal with for the rest of his life.  He also said that Noah will have to be dependent on someone for the rest of his life - which I hope that isn't true, but it's something that we've been planning on anyway.  Noah is still small for his age.  He was 91 lbs and 59 inches.  Looking at the chart online - I think he's around 15% on the chart for his age for weight. And about 11% for height.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 13 years and 5 months:

your child is 91 pounds, and that is
at the 20th percentile for weight.

your child is 59 inches, and that is
at the 11st percentile for height

Back to the muscle issue, he says he's doing really well with what he's got and was rather surprised with how much strength he can put out there.  He was impressed with the homeschooling and the progress he's made in the last couple years.  Even though he is still unbelievably behind, we are making progress.  Slow and Steady.

The other thing we had to discuss was Noah's "dirty neck syndrome"  ....  he has this perpetual dirty neck and no matter how much I scrub, I can't get it off - I keep nagging him about it.  Turns out it's a syndrome that can point to pre-diabetes.  It's common in obese kids (people) and those who are pre-diabetic or diabetic.  We checked Noah's sugar today and it was 163 - all he had to drink was one can of 7up and he had a tiny piece of cheese.  That was it.  He didn't really eat until after we got home.  So we're going to check it again in the morning and see what his fasting is.  (Edit: It was 88 for a fasting.  Which is great!!)

Nathan ........ oh Nathan.   So one of the first things he said was "I'm not sure about the Russell Silver Syndrome diagnosis."  ::: smacks my head :::  Really?  REALLY?   This again.  Nathan was diagnosed with RSS in April 2010, it was a clinical diagnosis which most RSS diagnoses are.  I think only about 10% (give or take) are actually genetically confirmed.  Basically - Nathan was diagnosed RSS because he fit the criteria.  But he's never been fully absolutely A-Typical RSS.  So a lot of doctors have made comments about how he doesn't have RSS and they are going to figure out the mystery of Nathan.  Which annoys the piss out of me.  But I guess when it's coming from the Genetic's Doc - who previously agreed with the RSS diagnosis - then I can't be mad.

He says he has some of the facial things, and other physical "symptoms" ... but he doesn't fit well in the RSS box.  That his brain issues are a major concern pointing away from RSS, and all of his speech issues.  So ...  he's thinking it's got to be something else.  It's definitely genetic, but he can't put his finger on anything in particular.    He's doing a carbohydrate deficient transferrin for congenital disorder of glycosylation.  He's also banking DNA and going for a pre-authorization for a Chromosome SNP array analysis.  Which is the newest and greatest in chromosome testing.  He kept calling the tests Nathan had in 2010 as "old fashioned" lol.  I'm like, geez, it wasn't that long ago.   But Dr. G seems pretty confident that it's not RSS now.  So I'm really confused.

Nathan was 42 lbs 44 inches.  He's not even on the charts for his age.  Roger and Dr. G were saying that he's about 50% tile for weight and height for a 5 1/2 year old.   Oye.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 8 years and 3 months:

your child is 42 pounds, and that is
at less than the 3rd percentile for weight.

your child is 44 inches, and that is
at less than the 3rd percentile for height.

He kept calling me a great mother and that I was doing an amazing job with them.  Makes me feel good.

So here is Noah's Neck.

I guess it's called ACANTHOSIS NIGRICANS ....

I did a home PEE Dip on him tonight too.   He's spilling a TON of blood at the moment.  (He has kidney issues) ...   his Kidney Doc told me that it's not so much the blood - it's more the protein we have to keep an eye on.

His pH was off, Glucose and Ketones and White Blood cells (Leukocytes) were all good ...  Protein was Neg to Trace ...  and his blood in the urine was off the charts.  LOL.   I'm going to have him repeat it tomorrow too.  See how it is.

Noah gets fitted for his leg braces ...

Noah is getting NIGHT BRACES for both feet to help stretch out his tendons ... he is STILL walking on his tip toes and his muscle issues in his legs are rotten.  He has been complaining more and more about the pain in his legs.  We think *some* of it is growing pains, but the rest .... his every day normal everyday pain.  He has such a hard time, it breaks my heart sometimes.  His right foot is worse than the left, I guess... so he's getting a brace for just his right foot.  He's getting a DAFO 2.   Unlike Nathan's Sure Steps, Noah's has a hinge on it.  He had to be casted for it ....  which - he thought was a pretty cool process.  

These are the various colors and patterns he picked for the various parts.  Blue velcro, flame design for the velcro, red padding, and skull design for the whole thing.

 After that was all done he got his night time braces for both feet.

After we went and ran some errands, and he actually let me do this to him.  Hee hee....

Pssssssssssssst ... does the sign make him the Energizer Bunny?

RARE: Noah

My son Noah has Mosaic Trisomy 16 ..... He is extremely rare. While I was pregnant with him, I was given NO HOPE. None. But I still continued to have hope. I continued to love him and protect him in my womb. I was told he would be born still. If he wasn't, he would take his last breath sometime with in the first 24-48 hours of his life. He was born early, 1lb 12oz. Instead of taking his last breath in that time.... at around 40 hours old, he was breathing on his own - unassisted - and removed from the vent. My child, that I was told would not live, would not be compatible with life, would be so mentally and physically delayed, it wouldn't be "worth it" to continue with the pregnancy (that I flat out refused to listen to that advice).. thrived. That child I was told would not live, is 12 years old. He has developmental delays, medical issues, and hurdles to over come .... but don't tell me he doesn't have a quality of life! He is amazing, everyday he is amazing!

Here is a list I recently compiled with the things that Noah has dealt with and is dealing with that is of current concern....

Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias, oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes, C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Cyclic Vomiting Syndrome ....    He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.

Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid).  Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Dyslexia & Dysgraphia.  Tone issues & Supinated feet. (his list is a lot longer, but this is the basics right now), Sensory Processing Disorder, environmental allergies, braces, skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there.

** UPDATE ** May, June & July

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Here is the long awaited update on the boys ..........

Calahan got his eyes checked out in May.  He needs reading glasses, but he has for years now.  He could go without them, it's a mild prescription.  Much like mine.

Calahan had his first date with his girlfriend :)   Even though they have been dating for about 2 1/2 years.

They went to see Fast 6 at the theater and then we went over to my mom's for a BBQ ...

He's growing up so fast, it's hard to believe in 6 months he'll be 18.   We'll be taking his Senior pictures soon!!

He's such a handsome guy :)

Nathan and Noah at the Ped's office - Noah is NOT happy ...  

Noah  is never happy going to the DR ...  but this day, he was exceptionally grouchy...  LOL.   Noah has a habit of not telling the whole *truth* when he's at the DR.   About what hurts or what's going on.  He'll say he's fine.  He hates the DRs and it causes him a ton of anxiety.

Noah at the doctors 

I had the shock of my life the day of their Ped Well Child....  Noah had gained weight, and height - which is a great thing!  Trust me I'm not complaining about that.   I have also, over the past few months, noticed stretch marks, and he's gotten a little mustache, and a tiny amount of under arm hair....   but when the DR pulled his pants down to check his boy parts, I was NOT expecting what I saw.  I was one of those cartoons with the mouth hanging open.  The other child (who won't be named, but he's older) ... itched and itched and itched, so we knew he was changing, but Noah's never complained.  It was bizarre.  I knew he had started puberty, thought it was too early but according to the experts blah blah blah .. its normal.   What the F*** do they know?  

Now normally I wouldn't talk about that stuff, but ...... I have one of those Mommy moments you want to rewind and take back.   Still reeling from shock, when we got home...  I marched Noah into the kitchen were Dennis was and proceeded to try to pull down Noah's pants to show Dennis do something really embarrassing, and Noah squealed with embarrassment and I snapped out of my shock.  It was a - WHAT THE HELL WERE YOU THINKING - moment.   I wasn't thinking, I was in shock.  My 1lb 12oz preemie has HAIR down THERE.  Rewind.  Walk in the door.  "Hey Honey, we're home ....... GUESS WHAT!!!   It's confirmed, Noah's started puberty."  Walks into bedroom.  Yep, that's how it should have went.  

Dumb Mom.......

So ... let's see, what was next.....

Beginning of June we went to Seattle for Noah's Nephrology appointment. If you don't know what Nephrology is... it's the kidney Dr.   So we had a check up with him and Noah's still pretty stable.  They did some blood work but it seems it turned out all good since I haven't heard anything otherwise.  We all went that day ......

After that appointment we went to what we thought was going to be an Orthodontist appointment, but all it was - was another pediatric dentist.  We already have one of those.  She told us the only way to get orthodontics covered by insurance was through Cranial Facial   ...  Now, Noah use to see Cranial Facial   in WI and I dropped the ball on that specialty when we moved here.  So we got a referral to the one that is at Seattle Children's (that Nathan sees) ...  so I'm hoping maybe there is a chance, but I doubt it.  I'm not holding out any hope on that so we're trying to raise money for it.

So ...  Noah's oral surgery was scheduled for the end of June and the dentist we saw above made me feel as if the only way to get Noah Orthodontics was if we went through them and saw the surgeon that she wanted to do the oral surgery, because she was the one who did the orthodontics through Cranial Facial  ... but our local Pediatric Dentist, whom we know and love - had already scheduled the surgery ...  so we decided to go ahead and do the surgery.  So in late June we went in... it was Nathan's last day of school.  I got Nate in the van and Dennis called my cell and asked if I left yet, cuz they called to see if we could come in early.  So Noah came out, we dropped Nathan off, and then I took Noah to the dentist.  She did the surgery right at her office.  So she came out and told me they pulled 17 baby teeth out of his mouth.  You have 20 baby teeth that you lose between (normally) 6 and 12.  He had lost only 3, and those were always a pain to get out, they were loose forever - not for lack of trying, they just didn't want to fall out.  Much like the rest of his baby teeth.  But all his adult teeth were coming in around or behind the baby teeth ...  Noah had three rows of teeth ...his baby teeth in front, the front two adult teeth behind those, and then the two teeth that are suppose to be beside the front to teeth behind the adult front teeth ... on both his upper and lower jaws.  He has an incredibly small jaw. She also fixed a couple cavities he had - no more No Cavities Club for him.

So yeah....   he came home with 17 teeth in a bag, and 12 teeth in his mouth ...

He is still struggling with eating stuff.  Most of his adult teeth are coming up all at once now that the baby teeth are out of the way.  

Also Noah saw Orthopedics about his legs.  Now, Orthopedics says it's not an Ortho issue, and sent us to a Rheumatoid Arthritis doctor.... we just saw him, and he says - that he doesn't *think* he has it.  Even if it makes sense with his symptoms he doesn't have the wear and tear that would come with having it all his life untreated.  He's not saying he absolutely doesn't - but he says because he came in symptom free, and from what he saw, he doesn't think he has JRA...   so we still don't know why Noah's legs are in pain all the time.

Nathan has officially graduated Kindergarten!

 He was so proud :)

So in May, Nathan had another appointment with Dr. G in Urology, Dr. B's colleague whom trained under him, and hes going to be the one handling Nathan's hypospadious/undecended testicle surgery.  We liked him enough, still like Dr. B better but he's not doing surgeries at the hospital anymore and since Nathan will be staying in the hospital, it has to be done at the hospital.  Dr. B promised we were in good hands though.  Dr. B did his last surgery (2nd one) and the first one was done in Wisconsin.  This will be his 3rd surgery, and even this may not be the last.   They are going to be taking some skin from inside his cheek to put around his urethra to try to bring it to the tip of his penis since it's still on the underside.

Nathan absolutely LOVES the dyson hand dryers..... he will keep using them over and over and over and over...  LOL....  and he laughs when he's doing it...  

Nathan's self portrait drawn on one of the dry erase boards at the DR.  He's a happy mutant cyclopes... but at least he's smiling! 

Then we saw Dr. P (ENT) and we talked about his surgery ... and he wanted to look at Nathan's ears.  He said ... his left ear is con-caved in right now with the tube out.  He talked about taking his tonsils and adenoids out...  and they were going to try to schedule both surgeries together.  But he forgot about the talking about taking the tonsils and adenoids out.  So we had to go back to see him to talk about that again.  @@  LOL...   it is what it is, right?   So got that all squared away, and he decided to NOT take out his adenoids.  So hes going to get tubes and then his tonsils and because of his fragility - he'll be staying over night for that too.  :/

Because, after waiting a month and a half, FINALLY got a call with a date and found out they couldn't schedule them together.  I know that Dr. P wanted it done ASAP because of the way its affecting him.   So I just had them schedule them separately....  his Urology one will be August 2nd (next week, er, a week from tomorrow) and the ENT one will be September 3rd.  

So in other news, one hot afternoon when moods were boiling, Nathan pissed off Kaedyn somehow (really, its not that hard) and Kaedyn picked up a full 2 liter bottle of soda (Mt. Dew to be specific) ... and THREW IT AT NATHAN hitting him in the head.  He came crying and screaming and blood GUSHING out of his nose ..  (I have pictures of the massacre but I won't share, cuz it looks like someone was murdered.)  Anyway - I knew he probably broke his nose, but it wasn't obvious like Noah's had been when he broke his in Aug. 2011.  So we took him to see the same DR.  Noah had seen when he broke his.  Anyway, it was a process.  We didn't take him in the night it happened because we took Noah to the ER with an OBVIOUS break, and they hemmed and hawed over if it was broken or not, they TOLD Dennis it wasn't but then send them home with paperwork that said it was!  Regardless, Noah saw the local ENT the following day and he said it was absolutely broken.  So - we felt it was pointless if they couldn't tell that Noah's broken nose was broken, Nathan's wasn't obvious - so they'd say it wasn't.  So the day after it happened, he woke up with brusing in the corner of his eyes by his nose, and across the bridge of his nose.   We took him into the Ped to get the referral to the ENT, and had to stop for x-rays in between.

The verdict.  Hair-line Fracture.  It would heal in 6 to 8 weeks.

Nathan has also been having a lot of asthmatic coughing spells so we've increased his nebby treatments.  He is really good now for them though, sits there like a champ!

This is Nate and Kaedyn playing one hot day under the A/C in the master bedroom ...  it's a one room A/C.  They kept themselves occupied with their Leap pads.  

Eating a snack after therapy one day.  Nathan still had therapy so ... Nathan was HAWNGRY so we got a snack.  Got Noah some too for after his therapy.

This was BRIBERY ..  I found this at Goodwill and it was only a couple dollars, Nathan LOVES Angry Birds.  So this was bribery to put on short sleeves because he just won't.   So - it obviously worked!  Once he's in them and he's not throwing a fit, he's okay.  It's putting it on and fit ensues....  

This is another day at Seattle Children's with the Dyson Hand Dryers ....  LOL

 They make him so happy!

Nathan got his Sure Steps that he was fitted for w/ the last update.  He actually enjoys wearing them.  They said socks on the inside, and always have shoes on, well, that's easy for them to say.  Nathan is mostly inside and he doesn't wear shoes inside, he barely wears socks....  so we put socks on the inside after Mommy got to see them on his (bare) feet and put slippers on, that works.... right?   We also figured we could just put socks on the outside too if he wanted that ...  that way, not so slippery ...   hospital socks!  Or socks with treads on the bottom....   note to self, steal many hospital socks while in the hospital ....  and get socks with threads....

 He did have some redness after wearing them for awhile....

Nothing makes me happier then those moments where Nathan is giving me those true smiles.  Like this.  Not the smiles to appease me ... the ones where I have to say "Look at Mom" a hundred times and "Smile" fifty.   No - this is a spontaneous smile...   this is the best smile EVER ...

He got to go bare back riding at our friend Lisa's one day recently ...   he didn't like bare back riding much...

But he had a BLAST leading De around.  And just look at that picture.  He is a 6 year old little boy who is the size of a two year old, leading a horse around.   WOW right?

We got Nathan's new ear pieces for his hearing aids today.  This is what he picked up....

Kaedyn got signed up for his THIRD year of Pre-school.   This bummed me out soooooo much.  Kaedyn is totally 100% ready for Kindergarten - first kid who is very clearly ready.  But he missed the cut off by EIGHT DAYS!!!!   Ugh....  the cut off is Sept. 1 and his b-day is Sept. 9.   Yep, 8 days....

Kaedyn went back to the eye doctor and got a new pair of glasses, a little weaker prescription ... he went with Daddy and picked out his own glasses and was much more open and not as shy during the whole process so it worked much better...  Here is my handsome guy with his new glasses.

At the end of school they sent home a whole bunch of artwork......

And here he is with this end of the year diploma

He also drew his first self portrait for me .......

I always knew he was a box head.  Wait........ since he's a mini-me, does that mean I'm a square head?

For a little treat, here is Nathan, Kaedyn and Mickey Mouse at Seattle Childrens ...

And one last thing, we have some new furries in our family right now.  Our Cat, Autumn, had kittens.  She had five - one had severe Spina Bifida ... she lasted over 24 hours, and then Cupid, was a white kitten with only an orange tail and an orange heart on the back of his head ...  he died of Kitten Vanishing Syndrome which is pretty much Failure to Thrive.  We tried to save him ...  it was really sad.

Marnie is our kitten herder ...  she literally runs around them keeping them on the bed... it's funny.   The kitten names,  Rex is the Orange one climbing on Marnie.  Abby is the one that she's "hugging" and Boo is the black and white Persian ...  we lubs them.   Originally we weren't going to keep any but we had to put our cat Mia to sleep.  So ...  yeah.  There went that theory.

And I think that's it for this update!!  Next will be some entries from the hospital for the first surgery, I'm sure....  

Cranialfacial, Dentist, Urology - OH MY!

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There are still a lot of appointments going on - but as of now, it won't be so many a week or so often.  We have maybe one a week for the next couple months instead of several times a week - which is a good thing.

Just a quick update on Calahan ...  He had a follow up for his eyes, and Dennis took him.  Well, they did the pictures of his eyes and the pressure is still good, so she's not REAL worried.  When asked if he wanted a copy of the picture of his eyes....  he said "No, my mom will just put it online."  ....... ooooooooh dear.  LOL!  ...  cuz, I totally would!  Next time - it WILL happen.

Dentist - Noah is no longer in the NO CAVITY CLUB.   He got his first cavities.   With all the work he needs, they have to get everything pre-approved.  Sadly, insurance denied it the first round, so I knew they were sending it back.  I'm still waiting on word for that.  But we are looking forward to him seeing the Ortho that takes his insurance in the beginning of June!!!  We really need to get going on this before his teeth start causing him pain and other issues.

Sure Step Fitting ...  So both Noah and Nathan got fitted for Sure Step inserts.  Noah need them for his Supinated Feet.  It hasn't been put set in stone, yet, about Noah's inserts.  Not so much getting them, he's getting them, it's more so what kind.  He picked out Blue and Brown Camo if he gets the Sure Steps...

Orthopedic - When we went to Seattle to see the Ortho, I have to say - I was a bit disappointed.  I expected more.  Noah has been complaining a lot about his feet, his knees, his hips.   I just really wanted some ANSWERS.  And I left with more questions.

But honestly - isn't that the way it goes when you have kids with medical issues??  

So basically, we talked, and Noah was being Noah ... "it doesn't hurt, it feels fine, it hurts, okay it hurts here and here" .. it's like pulling teeth.

Anyway - she bended, pried, poked... Noah ...  and said that his muscles and such seem to be pretty good, his tone is a little better, and I'm like, are you kidding me???  He's complaining MORE.

Then she mentions it .....  Arthritis ...  (insert jaw drop) ...  She feels he may have Rheumatoid Arthritis...  so he's going to be seeing an R.A. doctor in July.  I mentioned this to his Physical Therapist after his appointment.  I forgot to mention it prior, and she looks at me and says "If I had known that, I would have done his appointment completely different."  Ha ha ha ... oops.   So he had been playing football outside the night before, too.  And he was very sore.  So I mentioned that, and she said it made A LOT of sense.  So after, she took Nathan back for his appointment and when Nathan was done, she felt Noah's knees and said they were hot.  That was 45 minutes after he had been done.  So ... she said it made a lot of sense.

Dennis' biggest worry is that this means, if Noah's already got R.A. ... that he is going to end up in a wheelchair before he's 30.

I sure hope not.  I try to encourage the kids to at least try things - even if it makes them feel a little uncomfortable or pushes them, because I feel they need to push themselves.  There are complications due to his disabilities, but I try not to let them use them as excuses.  However, I have to stand up for Noah a lot and remind people that he does have issues, his legs do hurt, and walking is sometimes hard for him.  It's hard to find that line.

Audiology - Noah had a check up with his hearing.  It's worse right now - a lot worse.   So, the Tympanagram showed that Noah's got a bit of fluid in his ears, she thinks from allergies.

Hearing that is normal is above the yellow 20 line.  Notice, Noah's is almost all under the 20 line.  Usually his right ear (the red one) is normal.  Even that's not normal.  We're HOPING that this decrease in his hearing is ONLY because of some fluid build up due to allergies.  I'm worried though.

She was going to turn Noah's hearing aid down a little because when he puts it in, he automatically turns it down to the lowest setting.  So she wanted to make it more comfortable for him, but I told her not to - because then he'd still just turn it down and it would be lower then his lowest setting now.

Craniofacial Clinic ... This is a big group that we see.  Usually it's the Craniofacial doc, but he wasn't there this time.  The ENT.  The Speech Pathologist.  The Nutritionist and the Social Worker to see if we need help getting a line out for anything.  So we got a new recipe for milk for him, for high calorie milk.  2% milk with heavy whipping cream, and chocolate syrup!  Woot!  3 times a day.  The Social Worker was going to see if she could find any info for me for an ortho for Noah (and she totally did as I stated earlier!) ...  and then the ENT saw him and he took him into another room to get the tube out of his ear that had already fallen out and was still in the canal ... he took a look at that ear and said that his ear drum was con-caved in and full of fluid again. He said he wanted to know how many ear infections he had between the appt (on April 15th) and July ... depending on this info, he may do another tube right away and form some cartilage around it to help hold it in so it doesn't fall out.  In addition to that, he wanted to take out his tonsils and adenoids   So it is going to be another hospital stay for that.   *** Update: May 16, 2013***  They actually called today, due to his hearing results, they want to do it now, they don't want to wait.  However they had only mentioned the tubes and I told her he wanted to do the tonsils and adenoids, so she has to get in touch with the nurse & doc to see if that's still the plan.

Neurology.... Neuro was good...  really just a check up and he upped the dose of his migraine meds because he's been complaining a bit more.

Dentist.... NO CAVITIES :)

Urology... So .... he has to have another surgery.  We knew this already.  But still, breaks my heart.  Especially with the earlier news.  He is going to have his right testicle removed and another surgery on his hypospadious because the urethra hole is still not to the tip of his penis. However, because of Nathan's fragile state - he wants it done at the main hospital, and he's not doing surgeries other than out patient.  So Nathan has to see one of the guys that he trained, so he can do the surgery at the main hospital.  We meet him on the 30th ..

Autism Doc - We got to meet Dr. Tripp and we loooooooooooove him!!!  He was amazing.  I had to say it but I like him a lot better than the other Autism Doc he has.   So Dr. Tripp didn't patronize me by saying Nathan's not autistic or will grow out of it.  Nathan doesn't present Autism classically - we can all agree on that, however; he does have Autism. There is no question at all about that.  We talked for a long time about a lot of various things.  My mom and I both like him a lot more.  So he said that they are taking away the "Autism" "Aspbergers" "PDD-NOS" and just saying "Autism Spectrum Disorder" now.  So now ASD is not to be confused with the other ASD.  Ya know... my ASD (Aortic Septal Defect) ... so we're really happy with him.

Cardio ...  after a couple hour appointment, Nathan is now in the ALL CLEAR!!  YAY!!!  The Doctor was great, he knew the kids old Cardiologist... he has lived in Wisconsin - it was awesome talking to him.  Kinda sad we can't see him anymore... lol... but it's all good.  Kaedyn still has to be cleared yet.

Sure Steps Fitting was funny with Nathan.  He'll find anything he can to hand on and flip on or he'll use the floor.   This day ....  it was this step stool...

So Nathan picked out pink (of course) and dinosaurs.  And he wanted to put the examples on...

We're still waiting on the approval because he had Doctor changes ...  ugh.

Audiology...  Nathan's hearing was NOT okay, either.  His right ear was actually better, the the Tympanogram showed the issue with his left ear - with the concaved eardrum and fluid.

 Again - anything under the highlighted yellow line of 20 is abnormal.   Nathan's hearing still isn't as bad as Noah's in the left ear, and it is worse on this one because of the fluid and issues with his left ear. ** Update: May 16 **  This prompted the ENT to not want to wait to do the surgery - and I'll guess we're going to be scheduling it tomorrow.  ::: sigh :::

Kaedyn had a dentist appt and got the all clear :)  Go Kaed!!

He also got his glasses....

He was NOT happy ....  he didn't want anything to do with the glasses, with the fitting - with ANYTHING ...

He finally got use to them and let me take a nice picture of him.  Isn't he HANDSOME!??!!