Nightly Struggle with Meds ..

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This is what I have to dish out for nightly meds for my kids.  Nathan is sick - freaking bronchitis/pneumonia  - Nate and I have both been sick since before Halloween.  It hit me so hard I couldn't go out Trick or Treating with the kids on Halloween - first year I have ever missed since Calahan was born.  (CRY!) ...  anyway ... so both of us are on antibodics, we're both on multiple daily  nebbies ...

We are hanging out in our beds all day - coughing and hacking and feeling like we're going to die

So .... despite the sick factor right now.....  Every night is a struggle with meds.  The first cup there (on the left) is Kaedyn's.  That's his Zyrtec/Benedryl cocktail.   Then there is the pain meds Nate takes on a nightly basis to try to combat his migraines.  We have found that if we give him ibuprofen at bedtime, it helps him not wake up with migraines.  The second cup is Nathan's Zyrtec/Benedryl with addition of his migraine medicine cocktail.  Nathan's migraine med tastes like peppermint, but he doesn't like it ... so I put it in the cocktail to try to mask the taste he doesn't like.  The next one is cough meds.  The last one has his thyroid pill and his Singular (Asthma med) in there.   The only thing that he DOESN'T take o a normal nightly basis is the cough meds. PLUS in addition to that, he has his nightly shot of HGH (human growth hormone) ...  which isn't pictured.

You call Nathan in and he realizes what time it is .... this is the reaction that you see....

See how icky his poor little nose is from this nastyness we have?????

We try to get the worse assult out of the way.  Breaks our hearts on a nightly basis.

Ugh!  We're trying to come up with a way to make this easier for him.  Right now handing him the puppy and letting the puppy lick his face to no end helps by distracting him just a little.   

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 Nathan

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So a lot of stuff has been going on with the boy.  So I'm going to update.

So - we were living in a bad situation with some "friends" ... our whole family was stressed out, we were basically only sleeping there until we found a place, and we were looking.  Then one night, things escalated and we didn't go back.  We ended up staying at my Mom & Step-Dad's...  and it was amazing to see the kids moods just lift :)

But sickness then ensued.  Nathan ended up acting like he wasn't feeling well.  (here he is sleeping and cuddling his Mickey)

I noticed that his eyes were really goopy ....  so ended up waiting until the clinic opened on Monday, and low and behold, the Monday we went to go in, was a holiday ... so it wasn't open.  So we ended up going into the ER...

 Having a blast playing on the iPad ...

 See how icky his poor little eyes were....

He also had an appointment with Neurology to discuss his migraines which he had been having again, it seemed.  (Hiding from the dark a lot, needing to cuddle/kangaroo, a lot of sleeping....) ...  and when we were explaining things to him, the DR said that with Nathan's medical history he was worried about seizures ... so he wanted Nathan's eyes checked, and an EEG done.  I had never seen him have a seizure, but I also knew that you can not know someone is having seizures.

Two nights before the scheduled EEG I was sleeping with Nathan on my Mom's love seat.  Something weird happened and I actually think he had a seizure that night, I really do think it was.  I was about to record it, when it stopped.  It is the one and only time that I know of, that it's happened, but he wakes up in the middle of the night all the time - upset - and we don't know why.  So who knows.  

What happened?

Well...  he was sleeping, and he let out this whine, and it didn't stop.  Then he would build that whine into a cry and eventually he'd scream, stiffen up completely - like a complete full body stretch, arms and legs outstretched and completely stiff.  Then the whole process would start over.  Whine, build up to a cry, scream, stiff, whine, build up to a cry, scream, stiff...... I grabbed him and pulled him over on me completely unsure of what o do, he wasn't responding to me, he wasn't answering me or even looking at me like he normally does.  So I had him laying on me, back against my chest and belly and I realized while he was doing the whine building up to the cry, he was also trembling.  This repetitive process went on for about 3 minutes before it stopped.  Then he turned around, looked up at me like "what am I doing on you mom?"  He pointed at his pillow, I put him over there, tucked him in ... and he went right back to sleep.

So I called the Neuro the following day, and told the EEG people when he had it done. 

 Nathan is the "Frog" and the EEG lab is in the frog clinic ...

 Nathan playing games on the waiting room computer ....

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

When it came time for the strobe lights, Nathan just laughed!  He thought it was the coolest thing.  He just laughed! Couldn't get him to fall asleep because he falls asleep with his hands behind his head, and he couldn't do that.  So he'd just get pissed off. 

The hour long EEG revealed nothing, so they want to do a 24 hour one, which is May 2nd.   I am hoping that if he is having seizures, that they pick up on it then. 

He had a check up with Endocrine to check to see how the HGH is doing and she was REALLY HAPPY with his growth.  So that's good news.  We see him going in spurts right now where he is really hungry and eats really well, and then when he's not so hungry and just doesn't want to eat.  Lately though, he has been eating like a champ and it's been so nice to see!!

His Autism (PDD) is doing okay.  He's still got major sensory stuff going on but he is doing so well in school.  He absolutely LOVES it...  it's a complete 180 from the school he was in before.  The preschool he was in before was very dull, not colorful at all, and just... he didn't enjoy it.  I donno what was going on there, but he didn't like it, and neither Dennis nor I did either.  Everytime he would go he'd cry.  We recently found out that the teacher is no longer working there either, not sure why, but she's not. This new preschool is amazing, so colorful.  Very welcoming, which is huge.  And his teacher is great.  Everytime we tell him it's a school day, he starts jumping up and down for joy.  We tell him he gets to ride the bus and he's excited.  HE LOVES SCHOOL.  Loves it!!

Then he had an appointment with Genetics too.  He saw DR. Glass.  So we would finally have answers on if his brain issues... and if it was Dandy Walker or Jouberts Syndrome, or something completely different.  We were going to finally find out what was going on with his last MRI.  He definitely doesn't have Jouberts Syndrome, I guess.  And Dandy Walker is questionable, his words were .... "It can be called at Dandy Walker Variant however it is all caused by the Russell Silver Syndrome I believe..." and then said he's rather call it some long doctor word.  So he doesn't really have Dandy Walker either, he has an under-developed vermis (in his cerebellum) or missing vermis ... and we also found out he has something called (we think this is what he said) ... Polymicrogyria ...  he said that, in a normal brain (which we all know) there is one fold, separating the left and right sides of the brain.  In the case of Nathan, along with the missing vermis, he also has a bunch of folds on the front of his brain.  Dr. Glass compared it to looking like a "bunch of grapes" ...

This is a Normal Brain

This is a Brain with Polymicrogyria

The last thing I wanted to talk about is that Dr. Glass said he conferred with Dr. M in WI (Nathan's Genetics Doc there) and completely agrees with her assessment of Russell Silver Syndrome.  Everything going on with Nathan, he said, can be linked back to the RSS. 

We are connected with a great group called the Magic Foundation, and they are having a conference this summer (which they do every summer) and we'd love to go.   But we just can't afford it.  I am debating tying to do some fundraising so that four of us could go, but I don't know if I can do it.  I really want to but...  I donno.......  UGH...

And to end with.... a few photos of Nathan "folding over" on St. Patricks Day...

Update on Nathan....

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We ended up getting Nathan home and things were hard for about 2 weeks.  Every diaper change, every time he even THOUGHT we were going to change his diaper, he would start to get anxious and cry.  The diaper changes were painful for him.  We managed through them though, and by the end of the time he had the tube in we'd start getting the 2nd diaper on him and we'd go "all done" and he'd instantly stop crying and go "all done" himself.  Very cute, but always heartbreaking. 

He immediately started to potty train after the tube was taken out and he is a Potty Training CHAMP!!!  He is peeing in the potty very well, he's wearing underwear all day when he's home and he rarely has an accident.  The only thing we can't seem to get him to pick up on, doing stinky in the potty.  Once we get him to understand he has to do that in there, he will be potty trained completely.  But right now he's got his potty jar (treats when he goes) and a pile of underwear he loves to wear, and he's happy. 

Both Nathan and Noah had appointments with orthopedics ...  we were told by the kids Ped that Nathan's records say that his Ortho in WI said he had Scoliosis... and then the radiologist based on the x-ray said he did not.  So I was all confused.  Good news is, third opinion .... he has a nice, straight back... no scoliosis.  2 against 1.... I'm removing it from his diagnosis list.  However, Cal does have it....  phhhh ...  Noah's tone issues are still really bad.  She said she doesn't see any point in casting this feet because she was sure it really wouldn't solve the problem.  This goes beyond tone issues in his feet and ankles, and lower legs.  He has pretty bad tone issues from his hips down.  She also noticed that he had the shorter leg without even measuring him.  So she wants him to see the skeletal dysplasia team.  They also want Nathan seeing them for his tone issues, where Noah is extremely stiff, Nathan is super flexible.  They also want Nathan to see the Neurodevelopment team because of his speech issues. 

As for Nathan's HGH shots, he's doing really good.  He knows he has to have that before bed, so he asks for it some nights.  This one night, he shocked me!  He saw that I had the easypod out warming up, and he comes up to me, he crawls up on my lap, reaches over, next thing I know he has the paper backing off the needle container and is handing it to me.  LOL...  apparently he was ready for it.  So I ask him, and then he gets up on his Dad's chair and leans over the back of it.....assuming the position!!   So I asked Calahan to come take pictures because I know some friends and family have asked.  Now, we have to give it to him in his bottom because that's the only place that he's got enough fat build up so .. I blocked out some of it ... but here he is that night... 

Here he is assuming the position ... he actually started to take off his clothes when I wasn't moving fast enough

 we drop one side of the diaper and no one ever sees the needle, you push a button on the top and that electronically puts the needle down...

 This is while the shot was going on...

 Afterwards .... he gets to put the needle (in it's container) in the sharpie box...

 And then we have to put the whole thing back in the fridge ...

(I apologize for my husband's messy desk! LOL...)

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HGH Training....

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Yesterday (9-16-10) we traveled to Tacoma to Mary Bridge for ... our training with the HGH device.  It marked the start of his daily shots, and even though I've been emotional and nervous we were anxious to get it over with AND get it started to help him grow.  Everyday counts....

We packed up the easypod and the training medicine cartridges, a few other things and hit the road.

We got there with plenty of time ... our appointment with the trainer was at 1:30 and we got there about 1:15... so we walked through the garage and into the clinic... 

We went in the clinic and into the elevator...

Nathan often has to squat on the floor in order to ride in an elevator.  Also you can see the ridge in his skull because of his recent hair cut, those cranial imperfections are more noticeable....

So we rode the elevator up to the 3rd floor, only Endocrinology is on the 2nd floor.. oops ...  so after Nathan made friends ....

We hopped in the other elevator, which was really cool.....  it had a glass back and a changing mural on the back wall, so as you moved, the picture changed... 

Then Nathan walked down to the raccoon department (Endocrinology) .....

The cool thing about Mary Bridge is it has these neat mosaic sun catcher circles in the windows... 

 And they have a bead and tile mosaic wall that I like a lot...

Hanging out in the waiting room because we were early, but our trainer was running late because the family before us took 2 1/2 hours for training.  So we just kinda hung out in the waiting room .... 

 There was a Russian family who spoke very little English and they were playing on both computers.  The little girl was coloring a puppy and Nathan crawled up barking, it was funny, so the Dad invited him to sit next to the little girl ... he said "come sit" to Nathan, and he did, I was impressed.

After they got called back, Dennis and I took turns playing with Nathan on the computer until we got called back.  (Course, Dennis didn't take any pictures of me playing with him, lol)

So I was planning on taking pictures during the training, but we were both involved in the training so I didn't get a chance to.   But we were done in about 45 minutes, and even though the first shot was shocking to him, he did really well with it.  He ended up scoring an Elmo Car Wash toy that he got home and just loved!  Then scored a $45 Buzz Lightyear from Nana ... He got extra cuddles from Mom... and he actually LOOKED at the camera and SMILED!!!

Night 2 of the shot: We took him in our room away from everyone in the living room .... as soon as I put the easypod on his little rump he clenched up, started the injection and he cussed me out in gibberish until it was over.  But he didn't cry... not even a little.

Night 3 of the shot: We ended up doing it in the living room this time, and it left us questioning if we did something wrong.  When I put the easypod on his behind, this time, he was fine, but when the injection started he clenched up MAJORLY and started to cry :(   Broke our hearts.  It totally left us questioning if I had it positioned wrong, if maybe we hit a nerve.

Tonight is Night 4... we can only hope that this gets easier for all of us.  In addition, we are leaving early in the morning for Seattle Children's because Nathan is (crossing fingers) having surgery (2nd stage of his hypospadious) tomorrow.  There is some question if maybe he won't because he's had his ongoing cold for several weeks.  But we're going to pack up and be ready and hope that it happens so we can get it over with.  I will try to update as soon as I can on it.  I may end up doing short updates from my blog application on my phone.