Thursday, February 27, 2014

Growth ... and Surgery ....

.So Nathan had a couple of follow ups this week.


The first was with Endocrine - about his growth .... about his thyroid.

Doing the growth hormone shots every night isn't easy for any of us.  I won't do it.  I just ... can't.  Not with the open needle.  I can barely give myself shots.  I let Nathan help me sometimes do my injections, to try to make it easier for him.  But I ... just.... can't .... subject that on him.   But something clicked with Nathan recently and he realized that he needs these, so hopefully - HOPEFULLY - we'll be able to be more consistent and it'll be easier on all of us.   So his growth wasn't all that good.   We're waiting for his lab results to find out if we have anymore room to increase his dose of HGH.  His weight gain is not good either, but .......... we have exciting news!!!

HE HIT THE 30lb MARK!!!!!!!!!!!!!  THAT'S HUGE!!!  Major milestone when a child doesn't have an ounce to lose.   He is about 7 weeks from his 7th birthday...

HUGE!!!

He was 30.3 lbs and 3' 4" tall (103 cm) ...  still the weight of a 2 year old and the size of 3 year old ...  :/

His thyroid is doing good, his medication amount is the same - no changes there :)

When Mom says stop spinning on your head .... one attaches one self to a stool and spins wildly ...

The clinic in Tacoma has a row boat in the waiting area ... most of the boat is inside, but the nose of the boat is on the other side of the window...  it's pretty cool.  The ores and everything are stuck in place.... so Nathan just flips and stuff, true Autistic he is....  always spinning and flipping ....

I love this thing and wish we could build one at home.  It's a light thing, designed for sensory purposes... they have it set up right by the chair in the lab - and it truly helps.  It's this fixture on the wall that you can touch, it has a bunch of different colored "marbles" (glass balls) ... and they will spin when you touch them.  So you can roll your hands over them and they'll move under your hands....

I don't normally take pictures of the kids during blood draws, but for once Nathan wasn't in my lap .... so I figured I'd take a series of pictures.  Poor kid :(

That appointment was on the 25th ....  (Tuesday) ...

Today, (the 27th)  ...  he had another follow-up.  

This time with urology to discuss how he is still peeing out of ........... three.... holes.

A couple weeks ago Kaedyn (Nathan's younger brother for those who don't know the kids yet) ... came running at me - he yells "MOMMY!!!" and I said what? .... he says "NATHAN IS PEEING OUT OF TWO HOLES" .... lol.... poor kid was traumatized ....

Dr. G (Urologist) was hoping when he saw him a few months ago that he would continue to heal up.  Instead Nathan has to now have a 4th surgery on his little male bits because he got a couple of fistulas after his last corrective surgery which DID WORK - his testicle is still down (YAY!) and his urethra is at the tip of his penis now (DOUBLE YAY!) but he is going to have to go in and get these other two holes under his penis which have become permanent (if not fixed) holes that urine is coming out of.   So he wants to get it done as soon as possible.... so the date was set today........ March 12th.  Less than two weeks ....  ::: sigh :::

He's almost 7 and he's still in diapers.  This isn't an unheard of thing for kids with autism, or other medical issues, but we feel Nathan can totally be potty trained.   It's just convincing him of it!  LOL...

Since we were in Seattle ... we thought we'd try to pop into the ENT department because Nathan has recently started to have a lot of discharge out of his right ear that smells bad :(   With his tubes, we felt it best to get it checked out.  Discharge for him isn't abnormal but this was excessive.  AND SMELLED BAD.

So we got him in (took awhile) and they pretty much got him right back between patients with the On-Call ENT ...  and she took one look at his ear and was like "I'm going to suction that out and take a culture" ... so she did.  She told us (which we didn't know) that any discharge is an ear infection and it means the tube is doing what it is supposed to.

So that's good.  I would have taken him in here to his reg PED but she left the clinic and he's on the cusp of switching to a new DR as of Saturday - and we were never able to find another PED through his old insurance and the doctor who he was assigned to after his PED left wasn't comfortable dealing with him (or Noah for that matter.)

In the car on the way to Seattle ....

We had to stop for lunch ... things were crazy this morning....  

Spinning again ... ha ha ....

MR. Daring ... (Dad was behind him) ... he decided to climb on the spinning stool to get a drink of water... and that goofy face, that's a normal face for him...  

5 drops in his ear twice a day....... even the pharmacist (whom we love) said that's a lot...

So we're doing drops ... getting rid of his stanky ear ... and going to be packing up or surgery ... again ... in a little over a week for another overnight stay of at least a night (but he usually stays at least two) .... :/   But luckily with his last surgery - they figured out a cocktail for his anesthesia that doesn't make him throw up ... yay!  So hopefully - doing that - will continue to work for him.  

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