Monday, May 13, 2013

Cranialfacial, Dentist, Urology - OH MY!


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!??!!

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