June 2022 Update ....

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Well HELLOOOOOO there ...

It has been a LOOOOOOOOONG time .... 

days .... months .... years .....   [gasp]

It's been awhile ...  I mean, yeah.   There hasn't been a whole lot "medically" going on.  Both Noah and Nathan are relatively stable in most to all areas of their care and we're doing well for the most part.  Which I am beyond THANKFUL for.  Because there were times ... 

And COVID happened.   We literally just holed ourselves into the apartment and bunkered down.  Might have invested in learning smoke signals and carrier pigeons too, but ... luckily, it didn't come to that. We survived the 2020 Toilet Paper shortage.  

We did, as a whole family, caught COVID in January (of 2022).  We escaped it for a long time.

Noah is 20 now ....  oh holy crap.  He's out of his teens, full on adult mode .... only nothing has changed.  LOL ....  

Noah's big news is he has a girlfriend!  She seems to have developmental delays too and that causes some confusion between them sometimes.  But she brings out some great things in Noah.  And they are both learning a lot - not only about each other, but also together.  He name is Melanie.  They have been together for 18 months now.  

We're still treating his juvenile glaucoma and his muscle pain/issues still heavily exist.  Of course his physical stuff doesn't go away and his Mosaic Trisomy 16 will never go away.  But Noah is doing really well and I'm so at ease with it.  I don't have to really worry about him.  The doctor actually told me that ....  I don't need to live by the whole ....  "anything could happy any day and we could lose him" motto....  doctor said, "I think it would have happened by now" ... and the only thing that I really worry about is his glaucoma and his kidney(s) .... 

His pain is just something he's used to and we deal with.  

So I want to mention that he's about 100 lbs now and his max height is 5 foot even...  he's not growing anymore.  He hasn't for a couple years. 

Also, Noah has no desire to drive.  Just the thought of it makes him anxious.   Maybe one day he'll push through that and realize the independence is amazing, but for now, we take things at his pace. 

Nathan is 15 now.  WOW ...  this kid amazes me too.  I can't believe he is 15.

We just had an appointment with his doctor and he weighs a whopping 65 lbs.  He is 4 foot 8 1/2 inches.  The parameters for "Primordial Dwarfism" is 4 foot 10 inches or less and I really don't think that he's going to get to be 5 foot 11 inches so .....  [sigh] ...  

The scariest bit is that he has 3 upcoming surgeries.  One is this Tuesday (the 21st) and I am terrified.  Don't tell Nathan that though.  This surgery is for his VPI and so they are going to go in and try to correct some of the structure that didn't develop properly in his throat and mouth.  The hope is that when it heals he'll be able to communicate better/speech won't be so hard for him.  There is no guarantee at all and because of that - this surgery was left totally 100% up to the boy who'd have to go through it.  And he wants it done.  In fact about 6 months ago, he asked me about it.  So yeah ....  he wants to do it and he wants it to work and I want nothing more then for it to work.  

However, as his Momma, I am terrified.  Last time we talked about this surgery - the doctor made a comment that if we did the surgery, he would die because his airway was too small.... 

.... of course this was years ago, and he's bigger and his airway isn't as small ... and it's the same doctor so I think if he felt there was going to be the same risk, he wouldn't do it ... 

BUT STILL .... dammit ... . it's still there in my brain.  

AND THEN add the fact that last time he was in the hospital he almost died and I just can't ... 

..... AND I am doing this as a single parent now because my "husband" left 3 years ago ...  oh yeah....  

Hi. My name is Annissa and I'm getting a divorce.  

Is there a prize for that? 

The prize is not being in a relationship that apparently one person thought sucked so much that they had to run away screaming ....  ha ha ha .... he didn't.  He just loved me so much he decided he needed to ...  whatever.  You know my sarcasm is one of the reasons he left....  

ENNNNNeeeyyyyway

I am used to being part of a team when Nathan has surgery - and having someone who helps to keep me solid and not let the anxiety take hold.  I won't have that. Not to mention his dad would always carry him into the O.R. and it's just going to be weird ....  

........  weird.   

And last time he was in the hospital was May 2015 when he almost died.  It's not okay. I don't need to think of that either.   

Let's all promise to keep me in check and not allow me to burst into tears.  MmmmmK? So yeah.  I'm trying to be okay but I'm not okay.  

So I will be updating.  

I spent some of today trying to figure out all the stuffz I gotta pack and take.   Wish me luck. 

It's time for an UPDATE!!!

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Yes ... the update I've been promising for awhile.  Winter season is usually a tough one for us.  There is a lot of sicknesses traveling through the household.  We had stomach viruses, colds, croup, bronchitis, a major outbreak of pink eye, ear infections, more stomach viruses, more colds moving into the chest and lungs... it was a never ending sick fest here ....      Springtime seems to be the time for an influx of doctors appointments.

So let's get updated....

Calahan has started therapy.  He has never had an easy time dealing with his anger.  He isn't an "angry child" but he has angry outbursts.  I can go toe to toe with him, but he is very self damaging when it's said and done cuz he knows he was in the wrong.  Some of this stems from what happened with his biological father, what he witnessed his bio-dad do ... and what may have happened to him - but we'll never know cuz he was really young and may have it blocked if he could remember it at all.  The therapy has been helping him, but sometimes he gets frustrated.  We realized one day when we were discussing school work that he has some major Post-Traumatic-Stress-Disorder from when he was bullied.

Short version - from 1st grade really onto Jr. High - he was bullied.  It got bad in 3rd grade.  There was one kid who followed him home saying he had a screwdriver in his backpack and he was going to KILL him.    Another day, same kid (I think) followed him home again and yanked on his backpack making him fall.  There were tons of threats.  I addressed all this with the school - they begged me to let them handle it - but each time they did - it was just a matter of .... don't do that, you have detention.... it might stop for a day, then start up ... happens again, I call....  don't do that, you have detention.... vicious cycle.  Jr. High he was chocked, and that was my last straw.  We pulled him out to homeschool him at that point ... then came to WA and he went back into public school ...  the second there was a hint of bullying, it was all over again. Major anxiety and PTSD... even some depression.

He hasn't had an easy life, but he's a smart kid, he's compassionate and he's so loving.

He and his girlfriend have plans for the future, and here they are on Valentine's Day when he met her up at school and gave her a gift.

He also started to see a psychiatrist to deal with his ADHD/ODD meds, and if he should decide he wants to try something for the anxiety and/or depression.

He had a recent eye doc appointment and he continues to need reading glasses.  There are some concerns though, this left optic nerve is bigger than his right by 15%.   This could be a sign that he has glaucoma - but she says it's more probable that it's just the way he's made.  We won't know for sure for awhile.  That's a little scary though.

Noah is doing very well right now.

Dr. M (Noah & Nate's Endocrinologist) says she doesn't need to see Noah anymore unless there are new issues that come into play.  She's really happy with his growth - and especially since he has hit early puberty (she confirmed my suspicion on this) and is having some major growth spurts.  Especially with weight (he has stretch marks - oh dear!)

There is still concern about the growth on his birth mark especially since he's got the new spot on the back of his head.  But we're still keeping an eye on it and going to get him into a dermatologist soon.

So Noah had Physical Therapy evals. I knew that Noah would need it.  The appointment  went good and it was really interesting. The lady who saw them and will continue to ... I like her. She also homeschools. Anyway ... Noah has abnormal tone - a mixture of high and low tone. He has something called Supinated Foot, and he has hyperextensable joints (don’t know what this means?  Think of contortionists… and this is funny cuz he is always so stiff), but not all of his joints are this way - just some. She's thinking of what to do for him, he's perplexing her a bit. (As in if he just needs shoe inserts or what) ... right now she wants him to practice doing five jumping jacks a day - in two steps. Do the jump and hands up motion (rocket ship) pause, and then back down (back together). She says that his ham strings are really bad right now, and his knees have issues.... she says he feels impacts a lot when he walks and stuff.... and a lot of what she's going to do with him is stretches and exercises to just build up his muscles and loosen him up. 

We had his first PT appointment the other day and she said she was still thinking what kind of inserts she thought was going to be best for Noah.   So I guess we'll see.   

Noah also had an eye appointment and he passed with flying colors.  She said that he has a teeny tiny astigmatism but it's not bad at all.  She did agree, though, that he has major allergy eyes.  She prescribed some drops for him.

Nathan is doing okay in growth - he still isn't on the charts - HOWEVER - he is following the RSS growth chart line pretty much right on (which is only on the height chart) ...

Nathan also had a PT evaluation …  I wasn’t sure he really would need it, turns out he does.  One of the reasons why the appointments (for Noah and Nate) were so interesting was because of how opposite Noah and Nathan are.  With Nathan .... he also has abnormal tone (a mixture of high and low tone in different areas) ... He has flat feet (which I knew) ... but he has functioning flat feet - which means the arches are there (at least right now) ... they just collapse. I guess it's called Pronation - from what I've read. It's the opposite problem that Noah has ... she says he definitely has Sensory Integration Disorder - she talked about getting him an SPIO (Stabilizing Pressure Input Orthosis) - she's going to put him through a trail with one to see if it helps him calm down. And she says she definitely feels he needs some Sure Steps (which is the name of the shoe inserts) - which is a thing that will go around his foot to help correct his issue. Other than that - she didn't have much to say about him - she says she's just going to monitor him over the next few weeks.

He had his first PT appointment and she realized she hadn't seen him do some stuff that she needed to - like walk, run and do steps.  She had just been observing him in the room while we talked.  So she did that - and worked on some stuff with him and he did really well.

He had to go through some allergy testing.  He got these spots all over his back and such, and I thought it was Chicken Pox.  But alas, it wasn't.  Noah, Nate & Kaed all got the shots, and Calahan had Chicken Pox when he was 3 years old.  So it's been a long time since I had seen them ... but ....  turns out they were hives.  So Nathan has started a allergy med regiment too.  He went through testing and the only thing he reacted to -really badly - was grass.

The spot on his spine is the "control" spot.   The one on the left side - middle of - his back is the grass spot.

Nathan also had an eye appointment ...  he has trouble focusing on things, so she wants him to get some +1 glasses to read with.  She hopes it'll help him focus better.

Nathan has 3 appointments coming up next week.  Craniofacial Clinic on Monday, Neurology on Wednesday and Urology on Saturday (yes - Saturday!)

The following week he had an appt with the Autism doc and Cardio... and he needs to have labs done.

Not too much going on with Kaedyn.  Just managing his eczema and his allergies.

He also had an eye doctor appointment....  he has something called Amblyopia.  One of his eyes is lazier than the other.  Usually this corrects in infancy and toddler years but with Kaedyn it hasn't completely.  We did notice it when he was a baby ....

 Of course it wasn't always that bad, this was a picture taken a few days later .....

Regardless - this is something he's obviously been struggling with.  She said that glasses are the first step, then there is eye patch therapy - and after that it's surgery.  SO ... let's hope the glasses take care of it.

His eyesight is really bad in his left eye.  It's a little bad in his right.  But his prescription for glasses is worse then Dennis' and imagine what's going to happen as years go by and it continues to decrease.  It kinda scares me.

Here he was in the middle of March - trying on glasses to order them.  He wasn't happy ....

But his glasses came the other day and after a little bit of inital fighting over it - and us telling him a thousand times how HANDSOME he looks with glasses on ... and the fact that he realized he can see better... we really haven't had to fight with him much to wear them.  And he is ABSOLUTELY HANDSOME with them.  He reminds me of a little Jonathan Lipnicki  (Stuart Little) and a little Harry Potter all mixed into one...

The bottom three pictures are of when we were at the eye clinic trying them on so they could be adjusted - he hated them at that moment.   The top picture is about an hour - hour and a half later ....  he's starting to get use to them!   He wore them until about 6-7 o'clock the first night (Tuesday) ...  and said he could see and didn't need them anymore (I think he was hurting) ... and so I put them on my dresser and I told him "you got to put them back on right away tomorrow" and he said "okay" and ran out of my room.  The following day (Wednesday - yesterday) he wasn't up when we had to leave for appointments ... so I put them on the entertainment center infront of the tv and told Cal that's where they were - and according to Cal he put them on without a fight and wore them all day.  He took them off about 7 last night and told me he couldn't wear them to watch Noah and he was watching Noah ... ha ha ....  and tonight - it's 8 o'clock and he still has them on :)  Of course he's taken little breaks here and there through out the day ...

So that's the update I have so far :)  More to come ....  for Nathan ... anyway ....  

Facebook Signs ...

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I was talking to my girlfriend and telling her how I was annoyed with some people.  I would ask people who are my "friends" and "family" to go like our facebook page.  What is the big deal?  You go like a page, you get our various graphics we share on your page.  So much of it has to do with awareness for different things, or uplifting words - or news articles.  I share a lot of things from other pages, and then I save them and I post them in the albums on our facebook.  We have about 38 or so albums right now.  There are a bunch of different Autism albums, there is one for IEPs, Chromosome Abnormalities, Learning Disabilities, Inspirational Words, General "Special Needs," Bullying, Love Letters to Special Needs Parents, Premature Birth, Growth Issues, and a lot more things.  

So anyway - I share something - I ask for people to like the page....  hours later...  nothing.  Not even one like.  It's been like pulling teeth to get people to follow the page.  At first I just didn't care ...  but I really do want to help bring awareness to these medical issues.

So I ask people, and I message people on facebook ....  and still nothing.  But I see them share stuff of other peoples kids, that they don't even know personally, and I see them share crap like "Share this Llama for no reason" and it's just IRRITATING ....  it's like, fine ... I guess you don't support our kids.  Thanks.... no not really ....  just actually hurts a little.

So my girlfriend suggested that I do those pictures with the kids holding up the signs.  I'm like, okay ... that's a good idea.  So today I did some with the kids.  I'm gonna share one a day for the next few days and see how it goes.  But here are the pictures.

If you read this and you'd like to LIKE the page, we'd appreciate it.  Trust me, we'd really appreciate it.  Nathan "helps" me with the page and Noah asks how many people have liked it everyday.  It's not just my thing, it's theirs too.  It's the whole families.

 **Update**  We were at 63 likes prior to starting the pictures. We'd get one or two likes a week - if that - prior to that.   So now we're up to 88.   I know we won't get to 1,000 anytime soon.  I only put 1,000 on the cards so that we could use them for awhile.

PTSD .... due to Bullying

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I take my teenager to therapy on a weekly basis.  He has ADHD ... mild ODD ... and it began for medication monitoring .... and because he needs it.  He has been through a lot - including being a witness to or being molested at the age of 6 or younger.   It's hard to see my smart, compassionate, loving kid have issues like he does.   Through therapy we've discovered that he is depressed, he has severe anxiety....  and just recently, realized, he has PTSD.

We pulled him out of school to homeschool him due to his severe anxiety (and now realizing he has PTSD a lot of things make more sense.) ...   It all started when he was in grade school and his dad did something stupid.  Parents apparently picked up on his Dad's case, and apparently the child needs to pay for what the parent does.

How fair is that?

It wasn't my son's fault, he was practically a baby!

We moved to get him away from the shadow of what his Dad did.  He had been bullied relentlessly in grade school.  Every day.  Making him miserable.  Kids would follow him home and taunt him, call him names, threaten him.  One day - one kid followed him home and kept telling him that he had a screw driver in his backpack and he was going to kill him.

It got worse in Jr. High and my breaking point was when he got pushed against a wall and choked.  This happened in the stairs at the end of the school day and there were countless students walking by ... and a kid who was suppose to be my son's "friend" pushed him up against a wall, and choked him, then ripped his necklace from his neck.

And when I informed the school I was pulling him out to homeschool him - all they cared about was the bottom line.  Everytime I called the school to complain and to report this abuse, I would get the same line ...  either it was "this happened off school property and there isn't much we can do." .... and continued to the whole "we'll deal with it" and so they call all the students involved into the office, and not only punish THEM but my SON also.  I didn't find this out until just recently.   This punishment was a vicious cycle.... they would do it, the bullying would stop for a minute ... and then start right back up again with in a day or two.

Hindsight - I should have done more, I should have called the cops.  We went to the school, we went to the parents.  It just didn't seem to stop.

And when I got a call one day that he had almost gotten into a physical altercation during class one day - I think the teacher was mighty shocked when I told her it was their own fault.   She calls me up - all bitchy - no kidding - and is telling me how he almost punched a kid in class.  But before he did, he walked out of class.  I asked who it was with - and she told me.  I said "do you realize that this kid has bullied my son relentlessly since the 3rd grad (if not sooner)....   she didn't seem to care or have any compassion - and she said she was fully aware.  So then I said "and apparently when I was told that he wouldn't have classes with these kids, that wasn't true."  So then I go on and ask the teacher what she thinks would happen, how much can one kid take before they snap.  I also told her, he did the right thing by walking out of class and removing himself from the situation instead of going through and punching the kid.  She didn't appreciate my tone and I didn't appreciate hers.  I told her, I will not punish him for this, because I am proud of him for walking away instead of giving the kid a black eye like he deserves.  I told her he has been taught to walk away from situations like this and if she plans on punishing my child, she better be sure to punish the other one too.  She wasn't very happy - and I was pissed.

So we thought things would get better when we moved.  I gave the kids a choice, they could try public school or we could continue to homeschool - and they both decided that they wanted to try out the public school system.  I was so happy - he was making friends, doing okay in school - sure there were issues.  We learned about his learning disability (Dysgraphia) and he wasn't doing great - but he wasn't failing.  Then it started to happen - and I saw this dive in his grades.  He started to complain about kids picking on him.  It was NOTHING like he had been through - but even the crumb of teasing was causing him major issues.  To the point where he was getting physically sick.  We knew something was wrong.

I pulled him out again and we decided to homeschool him.  His needs weren't getting met at school.  Because he couldn't find the voice to speak up and ask for help, he didn't get help.  I know you can't force a kid and he was refusing - I don't blame the teachers for that.  But they would call and expect me to have some magic answers for punishment at home because he wasn't doing his work.  He was lying about not having homework and when we set up a system where I would have the teachers write in a notebook his work, it never got followed through on....  he had an I.E.P and due to his learning disabilities - he was suppose to be pulled out of the classroom for testing and allowed to take it in another room where he could verbalize it and get it done, it wasn't followed through on.  When I addressed it with the school - the response I got was "Well, he should remind his teachers."   .....  Okay, I understand teachers have it tough and they have a lot of students to take care of - but it is not MY SON'S job to remind his teachers of accommodations he's suppose to get - and make himself a target for teasing in front of his class ... When I asked them to make sure that this was going on - it didn't happen.  It was not followed through on.

So not only does my son have severe anxiety due to the years of bullying ....  and have depression ....  but now, after his last therapy session - we realize he has PTSD.

This breaks my heart....

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 .... 

UPDATES *Calahan*

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I haven't updated in awhile, we've had a lot going on with my husband losing the ability to walk (unassisted short distances, not at all long distances)  ...  so I thought I better start updating :)   We'll start with  the oldest first :)

Calahan has been going through a lot this year.  He has been in and out of urgent care, physical therapy and what not because of muscle/joint issues and pain.  As if the kid doesn't have enough to worry about with teenage angst ...

Anyway ....

We thought it was his joints - growing pains and all - and his muscles.....  and he does get growing pains!  Anyway - then we thought it was arthritis due to his broken shoulder (from birth) ... maybe effects of his scoliosis ....   in other words ... we just don't know.


These pictures were taken one night in January in Urgent Care ....

texting his girlfriend.....

 Ooooooooooooh the pain!!!

 Ugh it hurts here too......

 Back to texting the girlfriend...

In February it got so bad that he couldn't move his head - period -exclamation mark - at all.  Over the last couple months it's gotten better ...  he's gotten some physical therapy and been doing some exercises.  The PT thinks his muscles are too tight in his back, especially the ones that runs along his spine, and he's got to get them stretched out.  Doesn't help he sits hunched over and all that....  so now it's constant "Calahan, sit up straight!" on my end.  No fun at all...

He's not doing so well in school - and Doc thinks it might be because his ADHD meds aren't 100% right.  He's on a high dose right now and he is still struggling pretty bad.  So she wanted him to go see some behavior health people.  This happened the other day.  Cal was super nervous no matter how much we tried to put him at ease.   Went through an intake and they determined that Cal has some major anxiety, and a little depression ...so they want him to go to a different place that has a lot more services.  We'll have to go through intake with them again - and do all that all over ...  but at least we're on a path ....

Dentist:  2 cavities and a root canal :/  poor kid - he refuses ...  and he's bigger than me...

Back in Fall 2010 - he went through some testing in school - learning disabilities ..... it was determined he has DYSGRAPHIA ...  it's a disability where he can't get the words from his head out through his hand.  He has to - usually - verbalize it ...   the school is dropping the ball here.  

That's pretty much it with Calahan :)