Emotional Vomit of a Worried Mom

So since Noah and Nathan's appointment with the Genetics Doc (team) ...  my mind has been reeling a bit.  I got the letters in the mail today - from the appointment.  Ya know, the visit summery, the doctor's notes that he dictated.  So I am just reading through them....

Basically - the diagnosis we've been living under for the past 5 years is being taken away from Nathan.   That of Russell Silver Syndrome.

The biggest reason is - as Nathan is getting older, he is seeing less and less of the RSS features, and the brain malformations, the cleft palate - and maybe some other things, point in a different direction.
But he doesn't know what.

He mentions his "cerebellar vermis hypoplasia" which we know as Dandy Walker Malformation

the "bilateral frontal polymicrogyria" knew about that too

and "2 subcortical cysts" ....  knew about that....

Doc G. points out that he has a "marked 3 year delay" in growth.  He has proportionate small stature, thin musculature, and distinctive external features.  He has very mild clinodactyly, distinctive foot with presence of short second toe (shorter than both the big and middle toes) ...  he has distinctive craniofacies - which has a triangular aspect to it.  He has hypoplastic columella, cleft palate, cleft chin with prominence.

Not sure what  overhang columella is - looked it up and couldn't find any information about it really - just links to disorders ...  so I found out "columella" refers to the area between the nostrils ... and over hanging just means what it sounds like.

The picture below is NOT Nathan, it's an example of what is being talked about.....  

Then I saw stuff like....

"hypoplastic nares"

1. Hypoplasia is a congenital condition, while hyperplasia generally refers to excessive cell growth later in life. (Atrophy, the wasting away of already existing cells, is technically the direct opposite of both hyperplasia and hypertrophy.) Hypoplasia can be present in any tissue or organ.
2. The anterior nares are the external (or "proper") portion of the nostrils (nose). The anterior nares opens into the nasal cavity and allow the inhalation and exhalation of air.

 and "apparent telecanthus" ...

Telecanthus (from the Greek word "tele" (τῆλε) meaning far, and the Latin word canthus, meaning either corner of the eye, where the eyelids meet) refers to increased distance between the medial canthi of the eyes, while the inter-pupillary distance is normal. This is in contrast to hypertelorism, where the inter-pupillary distance is increased.

The distance between the inner corner of the left eye and the inner corner of the right eye, is called intercanthal distance. In most people, the intercanthal distance is equal to the distance between the inner corner and the outer corner of each eye, that is, the width of the eye. The average interpupillary distance is 60–62 millimeters (mm), which corresponds to an intercanthal distance of approximately 30–31 mm.^[1] The situation, where intercanthal distance is intensely bigger than the width of the eye, is called telecanthus (tele= Greek τηλε = far, and Greek ακανθα = thorn). This can be an ethnic index or an indication for hypertelorism or hypotelorism, if it is combined with abnormal relation to the interpupillary distance (A D STEAS).

Traumatic Telecanthus refers to telcanthus resulting from traumatic injury to the nasal-orbital-ethmoid (NOE) complex. The diagnosis of traumatic telecanthus requires a measurement in excess of those normative values. The pathology can be either unilateral or bilateral, with the former more difficult to measure

AND ....  "narrow palpable fissures in the horizontal plane"  I know fissures means cracks....

I'm not sure if that's in reference to his nose or what.....    I'm just.....  ::: sigh :::

And now, instead of RSS, it's "Undiagnosed genetic bio-medical diagnosis to account for Nathan's congenital anomalies and developmental delay." 

And then on the page below, the thing that jumped out at me was "for exclusion of a congenital disorder of glycosylation of both N and O subtypes"

And there was talk of UPD which is Uniparental Disomy - which means that instead of getting DNA info from both parents - for an arm or what not of a chromosome, or some part of the DNA, the information for both sides came from ONE parent.  So instead of getting info from Dad and Mom, it is Mom and Mom or Dad and Dad.

There is a whole list of UPD's  ...  one of which IS Russell Silver Syndrome.


Noah's appointment didn't go the same way.  At least his diagnosis is solid.

There were a couple of things though ....  

Noticed "Pectus Excavatum" and thought - well - what the heck is that?  Makes sense once I found out what it was... it means the chest is con-caved in a bit

This is how they fix it.....

Another thing I didn't know what it meant was the "pes planus" which just means flatfoot(ed) which that I knew.

And the "acanthosis nigricans" which we talked about at the appointment, it's the darkening of the skin around - like the neck area - and is often a sign of pre-diabetes.  I have tried to scrub this off his neck but it doesn't go away.  :/  Scary.

"At this time I think it is reasonable to continue to attribute most of the symptoms and signs to Noah's Mosaic Trisomy 16" ... including his muscle issues.  He has strength - but his muscles wear out and weaken up very easy.  We've been trying to figure out what all could cause these muscle issues - can't figure it out - and Dr. G said ... basically, when Noah was conceived, of course his cells didn't reproduce correctly, and that includes his brain.  So his brain is wired differently and he thinks Noah's brain and muscles can't communicate well - so it's a neurological thing.

He also basically said that Noah wouldn't ever be able to live by himself.  I'm not 100% sure I agree with that, but I do know it's a huge possibility and we (DB and I) have already talked to the older boys about needing to be there and take care of their brothers.  Kaedyn is a little young to have that conversation with.  But still - to actually hear it - out loud - it's like BAM.... punch to the gut.

It doesn't MATTER that I have this knowledge already in my brain, that I have said it myself - and discussed it as a family.  It's like the Autism diagnosis.  I had speculation that Noah was on the spectrum all his life but was so on the fence - I'd be sure one day, and sure he didn't the next - that I didn't pursue it until recently.  Nathan I always knew was on the spectrum from the time he was 18 months old.  But when you actually HEAR - "your child has autism" it's like a punch to the gut, and a kick to the head.   Because - weirdly enough - when it finally comes down to hearing - yes - yes it's true - you start to think how everything is different now.  When - really - nothing is different.  They are still my kids.  I still love every ounce of them and wouldn't change them for the world.  But I have to carry the knowledge that ...  Noah and Nathan may never find love, or have kids, be parents, they might never be able to live by themselves....  and that's NOT just because of the autism but their separate medical issues, together, as a whole.  You see people with autism lead very good successful lives.  I'm not blaming that on the autism.  But it does weigh in.  KWIM?

My kids are druggies .....  this is their basket of what they hit on an almost daily basis.

 The first pic is of the boys nightly meds.  Nathan's is in the pink one, Kaedyn is in the green one.  Nathan has more pills than Kaedyn.... I think ... let me think a second.  Okay - so he has 5 pills and 2 half pills, so that's 6 right?   Tech.  Kaedyn takes six.  Nathan's is still MORE .. bigger pills.  And I have to grind it all up .....   and you like my notes in the med basket, one is when his G-Tube was changed, one is the last time I opened a new extension ... and one is what liquid meds he gets.

Liquid meds and crushed pills - ready to go in the G-Tube.....

I wasn't going to ask but I would be awful grateful for any prayers, positive thoughts, whatever you believe in sent Nathan's way. He hasn't been feeling well all week... he's been in a lot of pain (teething, migraine, ear pain) .... he's been vomiting off and on for the past 48 hours. Tonight we noticed that his right scrotum/testicle is very red and swollen again. His actual testicle is very large which is not normal - it's never been swollen to the size it is right now This is what landed him in the hospital in May (however we believe the sepsis was actually caused by an antibiotic he was on - but that is just an educated guess at this point.) .... He is NOT running a fever right now - which is going to be the tipping point. We know that if we take him in, we'll be sent to Seattle for them to evaluate him, and last time the only thing that held them off from hospitalizing him last time was the fact he didn't have a fever. So we know that THAT is the tipping point. He says it's sore, and it hurts, and we're keeping a close eye on it and taking progression pictures that will only be shown to the doctors. I ask that this is just a set back, something he fights off himself. This is the same testicle that was caught up by his hip until about a year ago and we were told could become cancerous. Suddenly he has all these problems with it. Just hope this is becoming a new "normal" for him and nothing else. It's scary though.

His Epididymitis is back.  I can't show pictures ...  but he's really swollen.  REALLY swollen tonight.   

This is basically what is going on .... 

This is starting to become a chronic thing :(  

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 .... 

Kangaroo Time!

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I haven't updated in awhile.  NOT because the boys haven't had medical stuff going on, but because we have been struggling in WA a lot!  The transition just hasn't been easy, from WI to here.  We love the hospitals here, the treatment that Nathan has been getting, and the other kids... but the cost of living is killing us.

Regardless, I'm trying to be a lot better at updating.  I know there are friends and family out there who are wondering how the kids are doing medical wise, so I promise I will do better this year at updating! 

I had to laugh this morning, I had 25 unpublished comments this blog!  SERIOUSLY!?!?!  I rarely look at my Dashboard so I just didn't see them.... and they were ranging from recently to ALL THE WAY BACK TO JUNE!  HA!  Oops....  (Cartoon me has a bunch of hearts floating above my head from all the love I feel though!) .....  teehee... 

So...... Noah has an appointment in Seattle tomorrow, and I have to call to reschedule some appointments for Nathan, and find out what exactly is the hold up for his Autism Clinic because it was suppose to happen in December.  Most likely - it is because I never turned in any school questionnaire ... which was never done, because HE REALLY DIDN'T GO!!  He went for a few days, then got sick for 3 weeks.  This was after he didn't start on time because of his surgery!

Oye-vey......

So ....  Nathan has times where he just cries and cries and cries...   the only way to calm him down really is to do the kangaroo .....  I really regret getting rid of my sling....

 I end up sitting on the corner of a blanket, and then tucking two corners behind my back to make it tight, then he usually wiggles around and flips about inside the blanket.  Sometimes he'll go in the blanket and completely stay covered up, head and everything ...  and sometimes he just  likes to be all tight in there with his head out.  And it has to be my purple blanket... well... usually.  His favorite color is purple.  Usually he'll either cheer right up, or with in a half hour he'll be better and smiling.

We are constantly finding him in places he shouldn't be... he managed to figure out how to open our dryer one day, and heard him yelling - found him in there with the door shut.  The hard thing is, he opens doors!  We put baby locks on a lot of doors but he still manages to somehow get the things off and then opens the doors.  He's a smart little stinker that makes our lives difficult sometimes.  He runs out in the streets and he has left our house without us knowing he left.  Now, mind you - we realize this in a few moments that he's not where he's suppose to be, and then of course, instant panic!  It's hard.  I don't know what to do, right now I just try to make sure I know where he is ALL THE TIME.  Right now, he's on his couch watching cartoons and Kaedyn is laying beside me and Daddy playing with my cell phone (he's singing the alphabet) ...

Anyway - the other day while at my mom's she brought down an empty container to put away my Mom's Christmas Village she puts out on the mantel of her fireplace.  We both had gone in the laundry room for a second, and this is what we came out to.

 Any small confined place he can find, he's in........

There are just things that strike me hard and I keep saying, as much as I want to be wrong, he HAS to be on the spectrum somewhere... this isn't just a stage thing for him.   ::sigh::

He had an MRI done this past week too, he has been getting his migraines more again and it's been awhile since he Dandy Walker Cyst was checked....  We don't know the results yet, but any prayers that they are good would be welcome :)

Update : Long over due...

I figured I better get an update out since I haven't been updating over the summer. I think I needed a break more then anything. So I will update in one big update, and will soon start Nathan's daily diary back up.

Calahan got his full arm cast off after 4 weeks and got a cast from his hand to almost his elbow for 2 weeks, and then he was in a brace for a week. He transferred from cast to brace on July 13th.

Otherwise he has been doing pretty good. He's about to go on a trip with his Grandma (his Dad's Mom) to South Dakota to go do all sorts of fun stuff.

He's been doing fairly well with his ADHD. We haven't started to homeschool regularly yet, but we'll be starting in September.









Noah has been doing well also. He seem has been sick a few times but I hope the mysterious fevers and such will stop now.

We decided to keep him out of school this year too and homeschool him. Maybe he'll catch up more with the more one on one attention and all that. Next year I think I will leave it up to him if he wants to go back to school or not, most likely Cal won't want to go back to school. But we'll see how this year works out for both of them.
















Nathan, well he's a story all on his own. He isn't gaining a lot of weight again. He's spitting out all his meds we give him other then his thyroid med (pill form, and we just give him the half pill at this point, we don't break it up anymore) ... We *think* he is still getting a touch of a migraine now and then, but no where NEAR where he had been before. His appetite has fallen again - we're trying to get everything in him we're suppose to (his pediasure and all that) ... He started to have nice gains and now I don't think he's gaining again.

We got his genetics tests back and EVERYTHING is normal. We were told the Russell Silver Syndrome came back negative too, but I had read somewhere that the genetics test doesn't always come back positive for RSS. So I'm not so sure that we're out of the woods there considering how well he fits that. I am going to do more research here and re-approach about it.

Right now he has Rotavirus. He's thrown up twice in the last week at night, and has had a fever of 102 come and go. He got tubes in over the summer and he is DEFINITELY hearing better. Talking wise is slowly and surely getting better. He surprised us one night by saying "what's that?" when the phone rang. Mind you only me and his Dad could probably understand half the stuff he says right now - but it's a step!









Kaedyn is doing great. He still has his bad eczema but it doesn't seem as bothersome as before. I'm still hoping that he grows out of it for the most part.

He has about 5lbs on Nathan right now, they are in the same sized clothes. He's got 4 teeth and a few more coming in, and he's getting ready to walk.

His first birthday is in a few weeks and I'm not ready to admit my baby is growing up.

He has the rotavirus really bad - he gave it to Nathan - I can only assume through cup sharing considering they are constantly going after each other's cups (well mostly Kaedyn after Nathan's cups) ... or Nathan is putting Kaedyn's paci in his mouth ... they like swapping germs. Regardless, after being completely unable to get a handle on his diaper rash he has gotten from having the constant poops ... we went in and found out they both had rotavirus and Kaedy's rash is so much worse, so red, sore, and tender, swollen and bleeding a little. He cries with every diaper change. It breaks my heart. Nathan's hadn't gotten that bad, so he still does okay. So I got stronger stuff for their butts, Nathan's seems to be clearing up nicely and Kaedyn's is getting slightly better.

Anyway - I think I touched up on everything.... I'll be back daily (or semi-daily) soon!!

May 14th - 24th - entry 22

This post covers from May 14 to May 24 - Nathan's Daily Diary entry 22

It has been a long long time since I updated Nathan’s DD … it’s been a combo of being so busy with him and not having the time to write, to being so far behind. I have to start writing it through the day, or sit down and write it at the end of the day – it’s the only way it’s going to get done on a daily basis again. So NOW I get to try to cover the last 10 days in one entry (oh how fun!) …

I know that the 14^th through…. I’m not sure when, maybe the 20^th? … we were having medication issues. I’m not sure if it’s the combo or what but he has been acting as though he’s had a constant headache again – and so we sorta drew back on his migraine prevention meds – and then picked it back up. There were a couple days we only gave him one dose and then did two and sorta left it there. He really seems to do best on only 2 doses of the meds instead of 3 – and it seemed to start about the time we started the thyroid meds … which by the way, about a week ago, Dennis decided to just try to put the half a pill in his mouth – without crushing it. Nathan chewed it a tad but he kept it in his mouth (had started to reject the frosting) … and so we’ve just been doing that and he has been doing GREAT like that!!

So he’s taking his pill by mouth – whole, and is doing best on 2 doses of the migraine prevention meds – so we are leaving him there and will be talking to his neurologist about it – I have to call tomorrow (the 26^th) to get it re-filled, we’re running out.

He is currently on my lap with my typing around him – it’s a good thing I am an expert typer!! He has a pen and is writing ALL OVER my calendar! LOL… good thing it’s the end of the month… ha ha

So I had talked about his weights and how AMAZING his weight gain has been over the last month – but I couldn’t find his growth chart from the nurse (cuz it’s always the same scale, and pretty consistent.) So she came on the 15^th and I wrote down his weights for the last year so you can understand better just how amazing this is!!

They are as follows:

April 19, 2007 – he was born at 3lbs 4oz and was 15 3/4 inches …

A year of weights though the age of one…

May 6, 2008 – 12 lbs 3 1/2 oz (no height)

June 5, 2008 – 12 lbs 11 1/2 oz and 26 1/4 inches …. A weight gain of 8 oz – that’s about 2 oz a week …

June 26, 2008 – 12 lbs 15oz … 3 oz in 21 days .. so about an ounce a week

August 1, 2008 – 13 lbs 3oz ….. 5 oz in about 5 weeks, again about an ounce a week

Nathan becomes a big brother on 9-9-08

September 15, 2008 – 13lbs 10 1/2 oz …. 7 1/2 oz in about 6 weeks, so a little over an ounce a week

October 14, 2008 – 13lbs 14 oz and 27 1/4 inches … about 3 1/2 oz in 4 weeks – a little less then an ounce a week

December 8, 2008 - 14 lbs 2oz …. 5 ounces in almost 8 weeks, a little more then half an ounce a week (if I remember correctly, he had been sick during this time, this is about the time his migraines started, he wasn’t eating well, and he was grouchy as all get out … and had a strep infection on his bottom.)

January 6, 2009 – 14 lbs 11oz and 27 1/2 inches … 9 oz in 4 weeks … we blame this GREAT gain (which you have to admit, a little over 2 oz a week IS a great gain for him) on Christmas Cookies!!

February 13, 2009 – 15 lbs 3 1/2 oz and 27 3/4 inches … 8 1/2 oz in 5 weeks, almost 2 oz a week … we kept going with the Christmas Cookies (seriously!)

March 17, 2009 – 15 lbs 5 oz and 28 3/4 inches …. 2 oz in 4 1/2 weeks … he gained an inch though and realized his growing had been THERE – but after gaining almost 2 oz a week for the last several weeks, it was a blow to my heart!!

Nathan turns TWO on April 19, 2009

May 15, 2009 – 16lbs 14 oz and 29 3/4 inches …. In 8 weeks he gained 1 lb 9 oz!!! OMG !!! OMG !!! Seriously – I feel like shouting from the roof tops right now! AND another INCH!!! WOWZERS!!! Suddenly since starting all the meds, he’s a GROWING MACHINE!!! It’s a little over 3 ounces a week but STILL … amazing!

So now you can understand a little more why I was so excited about this great weight gain he’s got going on!! I can only HOPE that it continues!!! In the meantime – the same day (May 15) his baby brother was weighted and he was 19lbs and 2 inches shorter… at 8 months. Love that fat healthy baby, but it’s not right that little brother is out-growing big brother! Pretty soon big brother is going to start looking like the little brother. Regardless, I’m proud of both boys!

So now that I’ve really shared that …

Nathan has been having rough nights again. He either has been having a hard time falling asleep, or he’s waking up in the middle of the night… for the last several nights he’s been waking up around 1 or 2 am just CRYING and it’s hard to get him to settle down. I would almost think it was Night Terrors since Calahan had them, but it’s not the same thing. He’s not waking up in blood curdling screams – it’s gradual whining/crying and if you don’t respond he gets up. Dennis thinks he’s having nightmares. Either way, it’s not fun. For any of us. There was one day where he woke up at 4:30 and didn’t fall back to sleep until 6am, JUST as it was time for me to get Cal up for school, and then Noah up, get Cal off on his bus and then Noah off on his bus, in the meantime – Kaedyn woke up and then Nathan woke back up … I mean, seriously – no sleep for Mom that day! Especially considering that I hadn’t gone to bed until 1am the night before.

Eating wise, Nathan is doing well. I won’t go to “great’ yet. He is still picky eating, but he is CONSTANTLY eating. Either he’s snacking or eating off what we’re having, or snacking some more… he even has started to go and get his snack stuff (low enough for him to get) and bringing it to us. He has started to sign EAT more, and a lot more at that… he will sign EAT and then point towards the kitchen. Which is WONDERFUL considering he does not pick up on signing well.

Seriously – his ST can work on signing with him and he’ll humor her. I work on it with him at least once a day, and he looks at me like I just grew another head. As if to say “Please woman, I am above communication, who needs to communicate?” He HAS been picking up more words. Now mind you – they are NOT clear but Dennis and I are recognizing them. He still hums A LOT… but he’s starting. It’s baby steps right? Maybe once we get this next hearing test done, and he fails again like I have no doubt he will, we can get on the route of getting tubes in his ears (again have no doubt that is his next step) … MAYBE just MAYBE we can find out then if it’s just the fluid, or if it’s an actual hearing loss. I *still* say it’s an actual hearing loss, but I realize that the fluid isn’t helping, at all. Noah had massive amounts of fluid in his ears too, and when the ENT removed the fluid and placed the tubes, he said it was like trying to pull nightcrawlers out of the ground his fluid was SO THICK. And Noah was talking at 8 months, they weren’t clear but if I told you what he was saying, you could pick it up. Nathan just doesn’t even really try – or actually – is only NOW just starting to try at the age of 2.

Speaking of that…. I FINALLY finished his Autism paper work, it’s not easy answering questions like that … especially when you don’t know how to answer the speech ones! I mean – when it says “Can SAY Hi and Bye” … what do you put? He doesn’t SAY Hi or Bye, but he vocalizes it … he hums it… he signs it… does that count? I have no idea. I was actually going to call them and ask them, but then I decided I would go with my gut and just put NO cuz he doesn’t SAY them. I don’t know what the right answer was and apparently I’ll find out when we have the clinic evaluation. I mean he CLEARLY has signs of a higher functioning social sort of spectrum disorder, but who knows if he actually does. I was told most likely, they will do the eval on him now, and wait some sort of time period and re-evaluate him because it’s not going to be so cut and dry with him.

I am going to start working on homeschooling him too. I figure, most likely – after Head Start – I’ll be pulling him out of the public school system and homeschooling him. If things continue the way that they are, then I think homeschooling him would probably be best, but figure since I love the Head Start teacher, and he’ll be put in there for about a month after he turns 3 … (Birth to 3 Early Intervention stops AT the age of 3 and they are automatically put into Pre-school in the school systems here – the teacher that Nathan would be going to is the same one that had Noah from the time he was 3 to when he went into Kindergarten. I love her, she’s great!) … I figure I’ll see how that goes, and go from there.

It’s sad (to me) to think he has less then a year of his therapists coming to the house. But I’m sure we’ll be continuing to see them at times.

Anyway … now that he’s starting to feel better and he’s not so clingy since re-adjusting his meds again, I have a little bit more time to sit at the computer and get done what I need to. Provided… not MUCH more time… but enough.

May 14th

His morning QUAD of Meds ... migraine meds, allergy meds (pink), Ibuprofen (orange) and his pill on frosting before we just started to give him the pill ... it still amazes me, looks like so much med compared to a little guy...

Eating his O-R-E-O ... he loves cookies...
We were having lunch and I noticed that he was taking his chicken from his plate, putting them all in his cup holder, and then back on his plate, then repeat. And when he noticed that I was watching him, he would take them and throw them on the floor. Yes he was eating while he was doing it... but .... I've realized he does that A LOT while he eats

May 17th

The day of the Orange Balloon... lol... We got him an orange balloon and tied it to his overalls. We realized (while playing outside that day) that it was GREAT for keeping track of him! He's so little that we just had to look for the orange balloon in the air and know where he was. LOL... we may start doing this everytime we go to the park or something.

May 19th

LOOK!!!! I ACTUALLY GOT A RARE SMILE ON THE CAMERA!!! YAY!!!!!!!!!!!!!
It was a horribly hot day (I think it got to 90 that day) and we didn't have the A/C units in the windows or anything, so by that night it was still so hot in the house, Nathan and Noah couldn't sleep. Noah was up in his room until after 1am. And around 11 Nathan woke back up and I ended up bringing him back out in the living room thinking he might be more comfortable in his nappy spot on the couch. Well, he kept throwing himself on the floor. So after the third time of putting him up there only to have him throw himself back down, I gave up, and left him. He was fast asleep on the floor in about 5 minutes - it was cooler down there I guess, and that's what he wanted.

May 20th

Yes his undershirt looks dirty but only cuz he insists on letting his milk seep out of his mouth when he drinks. For example if you sit there and pull his cup out of his mouth cuz it's just hanging there, all this fluid he'll have stored in his mouth without swollowing will just seep out after it... the cup is like a dam. (rolling eyes) ... so I decided I am not changing him 100 times a day because he does this. He does it if we pull it out, he does it when HE pulls it out - he finds it funny to tag the furniture, floor, whatever with milk and play in it.
Here is Nathan waiting to see if his boy Kris won Idol or not - he was cheering him on since early on - everytime Kris would sing he would clap and clap... course he clapped for my boy Danny too but we all know how that turned out! (Third place, grumble grumble)

May 21st

Those two paragraphs were ALL I had left to do, a couple of the bubbles that I couldn't decide HOW to answer and double checking everything (Autism Clinic paperwork)
Doing BUBBLES in the bedroom for over an hour! There is NOTHING like blowing bubbles for an hour.. lol..

My bad attempt to get a picture of all four boys for the The 4 Brothers Ranch Homeschooling Blog... lol...

May 22nd

Trying on his BIG BROTHER'S shoes ... lol... this is just too adorable!

May 23rd

GET THAT CAMERA OUT OF MY FACE!!!!!!! Seriously woman!
Going bye-bye to the library and other errands!!!
Nathan's crocky boo-boo.... After our errands we had gotten home, I changed into my PJ's which involved me going into my room and changing, Nathan followed me... something happened and I left the room without making sure Nathan followed me, and then my mom called so we were talking for awhile (not real long) when I realized - I didn't see Nathan. So I asked where he was, and Dennis didn't know... I checked the kitchen, the hallway... Noah's room... now mind you he has this habit of going into rooms and shutting doors behind him - then knocking the door and whining like YOU did it TO him and not him doing it himself, it's a way fro him to get attention. LOL.... so I opened the bathroom door with a sudden fear of hoping no one left the toilet seat up and he jumped in (shivers) but alas, no one in there... wasn't in Noah's room, or his room, both doors were open, so I look at the end of the hall to MY room.... door is shut, I know I didn't close it behind me... so I go down there and open it up, and sure enough, there is Nathan sitting on the floor, but he's playing with a needle nose plyers - doing the whole crocidile thing with them (opening and closing them) ... and as I'm reaching for them to take them away, he catches his leg - OWIE!!!!!!!! Yeah, that hurt.... so it's his Crocky boo-boo...

May 24th

I apparently didn't take any photos yesterday .... bad me. I usually try to get a picture of him every day - regardless. Buuuuut I don't have ANY pictures from yesterday. (or a couple other days ...

I hope every one has a happy Memorial Day today - please remember those service men and women who have served our country and died for our freedome. It's not just a day of BBQ's.

Stay tuned for today's installment of Nathan's Daily Diary (to be posted tonight after he goes to bed)