I'm getting crafty! And some updates!

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A couple days ago, Nathan was NOT feeling well.....  

We piled blankets and comforters and sleeping bags and everything we could find on the side of the bed and then put his little couch thing that turns into a bed on top of that (because that's what he always sleeps on) ...  and this way we can keep an eye on him.  He still has pain and obviously he still isn't feeling well off and on ...  

And seriously .... these two kill me.  They are SO CLOSE......  It kills me how cute they are and how they might not have been born together, but they are my twins...

 Today Nathan got fitted for his new Sure Steps!   Noah got his brace (AFO) adjusted to his new shoes too!

No more pink!  His favorite color went from pink, to blue, and now it's red....  and of course DINOSAURS is the only way to go...  

Then we had to head to Tacoma to Mary Bridge for our follow ups with Neurology and Endocrinology ...

His Neuro appointment went well.  Everything is going well with managing his migraines right now and he hasn't had any new seizure activity (and since he's been in our room the past bit this is good so we can keep an eye on that too) ...     Nathan was having fun making the wheel spin with his feet.

Dear Mary Bridge, When your book shelf is empty .... my child thinks he needs to be a book.....   plus, it's sad.  It's very sad.   Please fill it with some books.   Thank you.

His Endo appt went okay too.   Hasn't been on HGH for MONTHS now because of insurance switch and then pharmacy switch and then insurance not covering the meds he was on switch ...... any other kind of switch we'd like to put out there?   So we think it is all figured out and should FINALLY start up again ... soon....

 So I ordered pads, and they aren't going to get here for awhile.  BOO........  A friend of the family made some flannel pads...... They turned out AWESOME ........

But they don't absorb well.   :(   BOO!    So I had some old cloth diapers I used as burp rags with the kids.   So I cut some circles out of that.

First pad I made.  I hand sew - I don't have a sewing machine ... so ...   This was done quickly, not perfectly ....  I just wanted to see how one would do, absorb and all that....  

And I made a little "clothes line" for drying after I hand wash them!  Ha ...  

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.  

Update *Nathan*

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First I want to say that Nathan just turned FIVE!!!  I had a little walk down memory lane in my main blog, and had to post all about his birthday!!  So go check those out if you are interested :)

As for medical updates......  what kind of doctor HASN'T he been to lately .... oh I know one...  Gynecology! 

On that note - we'll start the updates.......

First he had a visit with his autism doctor - who sometimes - annoys me.  Because Nathan will play with toys and has an imagination - he thinks that he will eventually "grow out of" the PDD-NOS diagnosis.  Because he was playing with the big duplo type blocks and making the Mommy & Daddy go to Mars in the rocket ship he built.  How do I know this - yes and no questions.  He was having a good day when we were there.  He wasn't stuck in Angry Bird land, he was very interactive ...  it was a good day.  Because of that, it's in his Doc's head now that he may not *really* have autism, just autistic tendencies ...  he said he wants to push the speech therapy ...  which I think it pointless and just another thing to add to my already over-filled schedule.  When I get a chance to talk to his speech therapist at his preschool whom I really like and respect, and ask her about it - then I might consider it.  Nathan has more speech issues than just "autism" stuff.  I think Nathan is more in the Asperger spectrum than PDD-NOS - he is super smart and if he could talk, I think he would be having some very interesting conversations - however - his speech issues have more do with medical stuff ... which I'll get to later.  My mom went to this appointment - and she's gone to several appointments with me... and when Nathan gets into his moods ("autistic tendencies") which is a lot of the time.... most the time..... I say "and Dr. H says he may not have autism" and she laughs .  She thinks that he should just sit and actually observe him for more than 15 minutes with toys he hasn't played with before.

Beginning of April he meet with his Cleft Palate team ....  this consists of .... well a lot of people.

and Magenta ....... can't forget about Magenta ...

First we saw the Speech Lady - the same one we saw last time.  If you recall .... HERE .... I wasn't all that impressed with her.  Nathan wasn't cooperating with her - I had to do stuff to get him to say anything - and the words that he says that are really good "Momma" "Bubble" "Purple" are his most used words that he's been working on for years.  Momma is a given .... Bubble... he looooooooooves bubbles.... and purple is his favorite color (other than pink) ...   so because he could say BUBBLE and PURPLE she said that he wasn't losing air when he talked due to his cleft ... (Cuz his speech therapist at school called me up to address that specifically) ... this lady just wouldn't listen to me.  So this time.... I just had this..... attitude.  I figured she wasn't going to listen to me again - but this time.... was a little different.  I told her again .. "Listen, Nathan's Speech therapist at school says he's losing air when he talks." and she's all "well we addressed that last time and honestly I have found that speech therapists who work with kids in a school setting hear 'cleft palate' and just start saying that." ...   So I was like .... really??  REALLY???  She's just going to say that these people don't know what they are talking about???   That's just not cool.  So last time she said Nathan had Dyspraxia ... so .... she gets him to work with her this time.... and he says Bubble and Purple again and she says "because he can do the Bah and Pah sounds he can push that air or sound out of his mouth - he's not losing air."  She's working with him some more, he's repeating words ... blah blah blah .... then she pulls out this stethoscope looking thing with the tip of a booger squishier (nasal aspirator) on it.  So she puts the ends in his ears and she has my mom and me say words to show him it's okay and then does it to him.   He says the words and she sits back and says ....  "He's losing air through his nose" ......

SLAPS FOREHEAD ........

DUH!!!

She goes back and looks at her notes and goes "he definitely wasn't losing air last time" ... yes he was.  She A: didn't get close enough to hear and B: Didn't use that nose thingy and C: he wasn't cooperating with her.   YES HE WAS!

At least she admitted she made a mistake ... sorta.

So he has .... VeloPharyngeal Insufficiency - or VPI.  They gave me a paper on it ...  you can view it here.  That's the link the Seattle Children's thing on it - which is pretty much the paper they handed me.

So he definitely has that - as far as the dyspraxia - I don't know ....  in addition to the VPI they say his mouth is very uncoordinated ...  they want me to keep with the alternative communications appointment - and actually- his Speech Therapist and the OT (I think) said they wanted to go with to that appointment. There are a lot of different devices they can use for him.  He already has a communication book (linked his IEP blog when he recently got it) and some other things are in the like that I posted at the beginning of talking about the speech stuff (.... the I wasn't impressed with her....)  .... but what I am REALLY hoping for is an iPad with the ProLoQuo2Go app.  You can read more about that in THIS BLOG.

 So she wants him to work on sounds such as M, N, W, Y, L, R, H that he can work on.... and 2 syl words w/ same consonant.... 2 syllable words with different consonants...

Anyway .....  then we had a little bit of a lull....  so I kept commenting on Nathan's dimples and he was loooooooooooking for them.... 

 (Video of Nathan looking for his dimples)


The next appointment was Social Work.... she couldn't really help us out at all - we've got all the services we can - at the moment - so she can't really direct us to anything else.

Nathan just decided to start ignoring everyone at that point and play on his computer.

Nutrition came in next ..... I looooooooooooath nutritionists ....  MOST of them sit there and tell you everything that you've already been told or make you feel like you aren't feeding your child properly ...  we are doing everything we can, but you can't force a child to eat and you can't make them eat things that they just won't or makes them sick due to taste/texture ...

But this one was nice, and I like her - and I think we'll continue to see her.  And Dennis agreed!

So I outright told her ... this is what we're doing, this is what we've tried .. this is what he will eat, this is what he won't ... this is what we add to food he does to bump up calories ... this is how much Pediasure he drinks....  we offer him the same foods we do our other kids and his little brother is bigger than him and actually we're being told he needs a little baby diet by one pediatrician ...  etc and so on .... and she says "It sounds to me like you are very knowledgeable and doing everything you can to encourage him to eat."

She is going to help us get Pediasure through the insurance since WIC won't be picking it up anymore.  Once he's 5 - he gets kicked out of WIC ... and so we have to find another way to get it. 

By the time the main doctors came in ....  Nathan was D-O-N-E ...... and thankfully, neither of them made us wake him up.

Dr.P - the ENT - came in and talked to us.  He said there was no doubt he needed the surgery to correct his cleft palate (V.P.I) ... that his biggest concern moving forward would be Nathan regressing and not being able to get him to eat after the surgery.

Dr. C came in and was telling us about the surgery (he's the one who will actually do it) and how he's planning on first putting another pair of tubes in his ears ... and then he'll start to correct the cleft.  He's going to fold over something from one side to create resistance on one side, and pull down some muscle from his nose to create resistance from the other side. 

We were telling DR. P and DR. C how when Nathan eats pasta - he gets it up his nose.  Everything gets up his nose :/    So they were talking about how they may have to go in and put a bump in the back of his throat (to keep stuff out of his nose) ...  and how they hope he won't need it and this will solve it - so they aren't going to do that until they have to.

We talked about how that might be part of Nathan's problem eating things....  he has no resistance at the roof of his mouth and when stuff pushes against it - it's got to hurt :/  so those foods that hurt, he doesn't want to eat......

Oh, right ...  he said they were going to sew up his uvula also ...  so he won't have bifid uvula anymore. 

Funny thing - Dr. P was the one who wanted to solve the mystery of Nathan (not believing the RSS diagnosis) ...  and he took one look at him this time and agreed he has RSS ....  dur.....

Craniofacial clinic is always a long day - so we were happy to get on the road home!

After that he had Neurology appointment ... I mean a different day of course - not the same day ...  and that went well.  Mainly - he's happy that the migraine meds are working and didn't say to much else.  At least ...  not that I remember ....  if I remember - I might have to come back and add.  Cuz - I'm totally drawing a blank.

Ooooooh I remember .... I did ask him if his speech issues could have anything to do with his brain malformations .... (missing vermus & polymicrogyria) ...  and he said he thought it most likely had more to do with his Russell Silver Syndrome more than anything.  

Next appointment we went too (this week actually) ... was Endocrinology ... his growth doc!  He still isn't anywhere near being "on the charts" .... but he did grow - a little.  A couple months ago, after all this started happening with Dennis - he started having major anxiety issues with his shots.  So we stopped them.  Was it really worth all the calories he burned throwing this massive fit and having this horrible anxiety???  So I just wanted to stop until we could get in and talk to her.  And she helped.  Giving your child shots is hard :/  no parent wants to do it.....   but I am the one who fought for the HGH shots anyway :/   So .... I told her what was going on, why we stopped ... she said it was okay.  She explained to me that with Nathan's thyroid meds his thyroid is normal - YAY ....  but with his last labs (last fall) his growth hormone was .6something ... and normal.  But with this last lab he did - it was .3something and that was low.  So he definitely has a growth hormone deficiency  ... and he really does NEED the shots.   So she had a child life specialist come in and talk to us, try to give me some tips for him - for me - for the whole process ....  she gave him hospital kids for him, Kaedyn and Noah.... and so they all have dolls with gowns and have bags of bandaids, a "shot" ... and various other stuff....

He did grow, just not well.   And he seemed to have gained the weight he lost from being sick with the bad virus he had - back!  YAY!!  He finally got over the 25lb hurdle and was 26lbs ... and when he got sick, he went back down to 24 :(   So he was back up to 26!!  YAY!!! 

So when we got home we drew faces on the hospital babies....

 Noah and his (he wanted blue eyes)

 Nathan and his..... 

 Kaedyn and his .... at first he said "blue eyes" but then he changed it (after I already did one) and said "noooooooo GREEN EYES!!!" So they are blue-green eyes... lol.... 

 PAGING DR. NATHAN!!!!!

So that brings us to Wednesday ......  Nathan's last day of being FOUR YEARS OLD!!!  We were in Seattle for most the day for three appointments - two for Noah and one for Nathan........... lucky doctor of the day .... Urology!!

running off some energy between appointments ... Noah, Nathan & Kaedyn.... 

Dr. B ...  we really like Dr. B ...  he has a son, himself, how has medical issues....  so it's always nice to have a doctor who understands.  Anyway ...... so the first thing out of his mouth when he exams Nathan is .. what a fantastic looking penis Nathan has (no lie) ... ha ha ... and told me that even though he put the urinary tract opening on the top of Nate's penis, after the cath came out and such it retracted to the point that it's coming out under his penis just below the head. So he wants to let Nathan's penis mature another year - and then if he's not peeing straight or what not (doesn't fix itself), then they are going to go back in and finish the job - taking it to the tip - but this is going to involve taking some skin from someplace (I think he said the inside of Nathan's cheek) .... to finish it. ALSO .... his right testicle (after his hernia surgery at 6 months, we think) got stuck up in his belly and wouldn't come back down. They tried to move it down with his first hypospadious (penis urinary tract correction) surgery and it failed because it went back up. So it has shriveled up and died - and is stuck in his belly .... so it will have to - at some point - be removed. I remember last time we talked about this he had said that it was because the body will attack it - eventually - and there is a very good chance it could turn cancerous or something... so in a year we'll know more about that.

So ..... two surgeries in the future.  Cleft Palate in the end of May (totally terrified about this) and another surgery on his poor poor penis sometime next year :/   Nothing really pressing coming up now....  his very last WIC appointment...  well child visit with his Ped....  visit with the dentist ..... and then on the 22nd of May is his Alternative Communications appointment, that same day he will see anesthesiology in preparation for his surgery on the 25th.    I'm scared .... I know it needs to be done though.  It really does.... 

I think that's it.  I'm sure I forgot something......... but I'm tired.  Ha ha .... 

The Last Month with Noah

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Everything has been going well with Noah, other then the fact that his hearing has been getting worse. It seems like everyday it's a constant chorus of "what?" "huh?" and blank stares as if he's trying to hear you but just can't make anything out of it.  We noticed that he has started to read lips, if you make him look at you, and repeat yourself....  he'll get it.

It's hard to watch him struggle like that.  He is getting his hearing checked again soon, but it doesn't seem like it's soon enough.

He hasn't been so sick, that he has had to be hospitalized, since 2007 when he almost died.  It's silly to go back, because he's fine now, but I will never forget watching him so sick, 103-104 temp, him throwing up, just being so sick he couldn't move much, him complaining about pain in his right side /... knowing something was that wrong and not having the doctors hear me, until I couldn't take it anymore, I was desperate, so when I went in for my DR appt 2 hours away I took him with ... and finally got someone to listen to me.  Thank goodness, or he'd likely to not be here.  They admitted him, ran a gambit of tests, his kidney's were failing and they were throwing a ton of blood out into his urine.  I remember standing at the movie cabinet next to the nurses station, they were passing around his urine sample around, had no idea I was his mom, they were talking about how it looked like apricot preserves.  Yep - it was that color ....

 They saved him.   One of the hardest days of my life was to leave my child in his hospital room, and then go down one floor to give birth to another.  The day Nathan was born, Noah was released from the hospital, looking weak and tired, but better.

That was the last time he was in the hospital.

Until the end of last month.  He was running a 103-104 degree temp.... and he was so sick.  Took him in and his blood tests showed an abnormal white blood cell count, and his urine looked like this .... mind you, there is a blue stick in there that matches the color of the cover.......

A lot of blood ....... A LOT ... not as much as the last time he was in the hospital... but enough to really concern me.

The DR ended up sending us home for the night.  He was concerned about him possibly having appendicitis, or something else going on.  So he wanted him on a liquid diet until the following day.  He wanted him to come back to the ER at 11am so that they could continue assessment of appendicitis.  If his blood work wasn't better, if he wasn't starving, etc, then we would run the CT scan or whatever it was he wanted to do to diagnosis it.

So we went back the next day ....

 He was more miserable on the 26th when we went back in, then he was the night before.  His fever was not registering on their monitors all day.  Kept reading normal or low grade ... and then, I pointed out to one of the nurses that he was burning the hell up, made him TOUCH Noah.. he did it the normal way, and although it said 101 ... I told him I didn't believe it, it was way higher then that.  I said "I hate to suggest it, but will you do it rectal because I know that's the most accurate way to get a temp" so he humored me.  Want to know what his temp was?!?  104.8!  Yeah!   His pulse was racing, his blood pressure was high ... they put leads on him...  to keep better track of his heart rate.... and Noah was so hungry when we go there, that they ordered him a lunch tray and he got this huge cookie on the tray, and he didn't even get to eat half of it before he said "Mom, I think I'm gonna throw up" I frantically looked through the cupboards and such for something for him to throw up in and all I could find was a bedpan type thing, so I gave him that and........ he lost it. Not to mention, they had to stick him 5 times to get blood from him the first time, three times for the IV, another time for blood draw, and then they realized they hadn't gotten ENOUGH blood so they had to come back and poke him again.  TEN TIMES he got poked that night... and a lot of those were digging pokes trying to find a vein.  He did okay for the first couple, then he'd get really anxious between but whenever they were doing the actual poking or what not, he was brave and not crying.  He was BRAVE .. and he was AMAZING.........  (pick below, trying to show the leads on his chest, and you can sorta see the IV in his left arm on the right side of the pic ...

Good news was - his blood tests were better and his urine looked clearer.  YAY ... but something was going on.  His kidneys were still spilling out a "large" amount of blood and his Kidney Docs wanted him to spend the night in the hospital for observation.  So after 9 hours in the ER we got transferred by ambulance to Seattle Childrens.  (Noah in the ambulance)

These were taken on the ride over.  Noah - who is always trying to smile for pictures, even when he's really sick.... 

 Here he is asleep with Max ... and his blanket....

 On the way over on the ambulance ...  they got the news that he had tested positive for Influenza A (which they took the tests literally right before he was put on the ambulance bed and we were put in the ambulance)  So from then on, it was mask time.....

 He was taken up to his room at 2am and he didn't fall asleep until 4am, I didn't fall asleep until 5 ... and we were up around 8...  he had been throwing up everytime they tried to get him something to eat....but by Sunday morning, he seemed to be holding stuff down. 

So we ended up going home on Sunday.  His kidneys had cleared up and it seemed that the flu was attacking his kidneys.  I think it's going to be something we deal with everytime he gets really sick.  He ended up being out of school the whole week due to his fever coming and going all week, and then ...  we all got a stomach bug!  Seriously!?!?  At first we thought it was us getting the flu, until Noah got it too.. then we knew it was something totally different.  And after a long week of hit, misses, and a car accident, he was out that whole week too.

Now he's doing good.  Even his hearing has improved again right now.    Because we moved (while he was sick) ... he had to start at a new school and he is doing fantastic there I think.

 His new Mascot is the Killer Whale... 

He had a follow up with endo and everything is looking good, and he saw Genetics ... so that he can be followed by them. 

When ever I sit and think about everything he's been through, I am always amazed and always go back to the fact that I was told before he was even born that he wouldn't live.  Yeah he has some ups and downs.... but he is doing amazingly well for the hand he was dealt.