August Update ....

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I haven't updated in a long time......  I took a blogging break over the summer, for the most part.  After realizing there was NO WAY we were going to get to the conference, I honestly had a moment of ... grief, I suppose that's a good word.  I really wanted to get us there.  But the conference has come and gone, tons of families in our network went and I saw all sorts of blog posts & pictures .... it was all bittersweet ... seeing them with one another and then thinking, Nathan should be in that picture.

:: sigh ::

 Kaedyn has been running a 103 to 105 temp fever ... it has been driving me INSANE ...  from Thursday night to yesterday (Monday) ... I have been sleeping with a burning up baby in my bed and we don't have a big bed.  Barely have room for Dennis and I ...  add in a big baby and ... well...  I don't sleep much.  He has been MISERABLE ...  you can see more from my other blog with .... 104...IS NOT A GOOD NUMBER and 104 ... IS NOT A NICE NUMBER x2  ...  Thank freaking GOODNESS that he's FINALLY feeling better.  Hubby took him to the DR yesterday while I was on my way to Seattle with Nathan .... the DR confirmed she thought the same as the Urgent Care Doc on Saturday, that it's just some virus that is kicking his ass and not leaving names he can't seem to break threw... but GOOD NEWS is .... he has finally broken the fever and is starting to feel better.

ALSO ...... Noah broke his nose this summer!!! CRAZY!!!  You can read about that one my other blog right now .... ANOTHER BROKEN BONE and NOAH'S SURGERY ...  

I guess at the DR .... the nurse took Kaedyn back, and mind you - he suffers from clingontomommy syndrome ... and he had just watched me walk out the door without him, just before leaving with Daddy...  so he was still in that gonna break down and cry at any moment cuz I want my mommy area...  and the nurse said to him "Boy, o' boy, I know who your mommy is just by looking at you"  HA HA HA HA HA ....  and my poor little boy just burst into a bubble of tears with the pathetic "MOMMA" whines in there.  Yep...  ha...  oh and apparently the DR thought my note was funny cuz I put as a "symptom" ...  super crabby & and really clingy ... ha ha ....

Anyway ....  off to Seattle I went with Nathan yesterday...  for once I took no pictures...   We were going to the Cleft Palate Clinic to find out what our options are.  Nathan's school speech therapist told me towards the end of last year that he had air escaping when he was talking and she figured this was due to his cleft palate ... at the time we had the appointment made for June, but I had a brain fart and thought it was a couple days into the week, and it was on the Monday - oops.  So we had to reschedule it.   So we did ....  it's been long awaited because after Nathan was born (they discovered the HIGH SOFT CLOSED CLEFT PALATE we were told then or the SUBMUCOUS CLEFT PALATE.... we're told now.  One of the Doctors turned around and looked at me and said "He definitely has a submucous cleft palate" and I'm thinking ...  why else would we be here.

Oh and let me back up a bit...... what is it with every Doctor wanting to solve the mystery of Nathan!?!?!?  One of the Docs took one look at him yesterday and asked me "who diagnosed him with Russell Silver Syndrome?"  I told him, the Genetic Doc in WI and Dr. G confirmed it here ... "Genetically?" he asked.  I said ... "No, clinical diagnosis"  and he's all "Well he doesn't fit the classic RSS guide line" and I'm thinking - is this guy serious??? Then he's like "If I come up with any bright ideas, I'll let so-and-so geneticist know..." and didn't even say HIS geneticist ....  and then "We'll figure it out" .... like he's going to be the genius to suddenly figures it all out ... the mystery of Nathan ... 

SERIOUSLY!?!?!   UGH .......... yet another Doc not wanting to believe his RSS diagnosis ......

Anyway - Nathan first had an ultrasound of his kidneys and bladder done (all was great) ... and then he had appointment with Craniofacial Doc #1 ... DR. C ...  Dr. C was the one who is going to figure out the mystery of Nathan.  He is the division Chief ...   He came in, took a look at Nathan's cleft and humm'd and hawwww'd ...  and then he said that Nathan would have to have surgery for his cleft.  I asked "He'll definitely need surgery?"  He said "yes" ... then I asked how invasive it was and he says "Not invasive at all, we do it all the time, he'll just need a night or two in the hospital at the most...." ... yeah that's not invasive at all ... it's a walk in the park....  he (or his med student) asked me about "have you thought about doing the tube feedings" and I was like... "It's been brought up but I don't see how it would help given the history of the other RSS kids.." ... he's all "how so?" ...  "Well, lets see....  all the kids his age if they have g-tubes or not, everyone is still the same weight ... I don't see how it's beneficial ..."  Yep, that's right.  Not gonna subject my kid to that when I don't see how it helps any of the kids ...I have fought to hard to work with him to eat normally to throw it all away.  Now if he was losing weight and there were other issues, I might consider it, but I don't see any benefit to crossing that bridge... oh and he was talking to his intern and said "You know how palates are straight?  His is crocked, and then there is a bump, and then there's like jagged areas and ..."  Guess his palate isn't very pretty ...   but his dangling heart is one of the prettiest ones around!!

Speech comes in ...  Mrs. L ...  she sits an arm and half length away ...Nathan is GROWLING words at first, and then I get him to say a lot of things by reading The Very Hungry Caterpillar ...  she  eventually says that since he can say "Bubble" and "Purple" and "Go" and "Daddy" that his speech issue is NOT due to his Cleft Palate ... ooooooh-kay?  ...  that's what we've believed all this time.  Since it hasn't really get better other then his favorite words.  I should have explained to her that those are the words we work hard on because it's some of his favorite things....    She umhummed and ah-huh'ed everything ... and then asked a few times when he started speech therapy .... A FEW TIMES ...  so was she not paying attention?  And then she says "I don't hear any evidence of him losing air when he talks" and I'm thinking ... you never got close to him and he wasn't exactly cooperating!  She says "I think he has a disorder called Dyspraxia" .... where the muscles aren't connecting correctly with the brain and he can't seem to form the words properly.  It does take him a long time to master a word, and it takes a long time for him to master one sign (ASL) ...

So I don't know what to think....

So when Doc #2: Dr. P (the Clinic Chief .... so which is a higher position, the Division Chief or the Clinic Chief?) peeks in, she starts blubbering off things like .. "I am pretty sure he has SEVERE VERBAL DYSPRAXIA" and I'm thinking ...  why didn't she tell me she thinks it's severe?  I can't help wonder if this is due to his brain malformations?  So when she leaves, he takes a look ... listens...  shows his intern Nate's beautiful bifid uvula (upside down heart shaped uvula) ...  So this Doc says that surgery is iffy ....  then says, because Nathan had tubes put in his ears, and one has fallen out - the other is still in place ... (he had tubes put in NOT for ear infections but because he has thick fluid build up in his ears and can't hear) ...  he says if he doesn't pass in the ear he has the tube out of, then surgery is going to be necessary and if he does pass, then it probably won't be. 

The other thing that was brought up was an Augmentative/Alternative Communication Screening to see if an alternate form of communication could be beneficial to him ... 

Um........ DUH!

So .... some of the options are of course American Sign Language

but he doesn't have full motion in his hands so signing is hard for him AND he doesn't pick up on signs very well ...   He does do the following:  More, Go, All Done, Thank You, Eat, Please, Play, and we've worked on Bath but he doesn't have that down ...

Another option are Communication Boards

I have seen this implemented in the school system - they are these cards that the kids can point to what they want - or closest to ...  and you can better understand what they are trying to say.   I actually talked to the Special Education person at the school district building today and told her what they said yesterday (about the possible speech diagnosis) and she said she'd talk to the speech therapist at his school and since we already put that (the communication boards) in his IEP, they'd try to start doing that and get us some for home too.  YAY!  Who knows when the evaluation will take place and so ...  I want start using this stuff asap because he is getting increasingly frustrated when he can't get across what he's trying to say.

And in doing research I saw this little device, which looks really interesting ...  instead of having a book of cards, this little device holds them...  it's called a MINImo device...

At the end of yesterday, Nathan had to get his blood drawn ... I almost forgot about it....which I'm sure Nathan would have LOVED ... but right before getting in the elevator to leave, I remembered ...  ha ha ... Poor Nate...    Anyway, we check in and wait and wait and the guy calls us back with a little boy who's gotta be just over a year old...  not much smaller then Nathan (sad) ...  and he takes us back ... tells them to go in one room and us to go into the room directly across the hall.  That little boy was just screaming which was making Nathan extremely anxious, and making him cry.  Once the guy was poking that poor little boy (could tell by the change in screaming he was doing) Nathan was signing every thing he could to let me know HE DID NOT WANT TO BE THERE ANYMORE AND WE COULD GO NOW!!  He was signing GO and ALL DONE and he was doing this ... it's a new one, from watching America's Got Talent to much - it means STOP ... LOL... 

 Top one is with his socks on .. he's doing an X ... bottom one I manged to talk the socks off of him for a moment, had to put them right back on after...

He is so funny.   The guy came in and Nathan was just freaking out at that point...  and the guy FLICKED it into his vein... I'm serious, he just flicked it with his finger!!  Although he didn't really say a word to Nathan, he didn't try to comfort him in any way - infact, when Nathan was screaming from fear and anxiety, they get was laughing....  kinda pissed me off... but I got so distracted with the flicking of the needle....I didn't know if I should be appalled or impressed.... 

In other news, today - Noah's kidney Docs wanted to check out Nathan's kidneys just to be on the safe side...   the ultrasound and blood test were for that...  and I got the call today that everything is A-Ok and they don't foresee needing to see him anytime in the future.  YAY!

20 Days of NDD & Woe is Mommy...

Wow … 20 entries already. Just seems like yesterday we started this upon his Neurologists suggestion. Well she didn’t say Hey, go to blogspot.com and create a daily diary for Nathan ......Nah… it’s just my choice of places to store and share it. If I am going to make the effort, I might as well let those who follow the kids (family, friends, readers) read it also.

I appreciate all those of you who follow and take time to read about Nathan’s journey, even if many of the days it’s repetitive. He has his schedule and he likes things a certain way – if you deviate from it without it being HIS idea, all hell breaks loose as the tears start rolling and the body starts throwing itself around and these wails of attitude come forth out of his precious mouth. It’s a scary sight – one I prefer not to witness. So yeah, he gets his way to a degree.

Someone commented on how tiny Nathan looks compared to his Dad. Well that’s easy, cuz he is. He is 2 years old and he is only 16lbs. Now I got very excited the other day because he had gained 5 oz in a couple weeks. I am excited to find out how much he has gained since then, and I hope it’s substantial! I hope. I’m going to call his nurse on Monday morning… and ask her to come and weigh him. Yay! Then I will update, and I will ask her to bring me a copy of her weights in (same scale and not different ones like on his DR growth chart) and share his growth with you all, but this is what his last growth chart from the DR looked like… (from his 2 yr check up) … you can see that he is below the 3% line, far below, because technically, he’s not even ON a percent, he’s not even on the growth chart… but he was following his own growth curve, until recently when even THAT started to drop off .. you can see how his growth curve has gotten farther from the 3% growth curve. That is why he was recently “officially” diagnosed with Failure to Thrive.

In the past there was discussion – at least touching on the option – of placing a G-tube. I have been very anti G-tube. Nathan came home on an NG-Tube .. we had to learn to place it, to replace it, to clean it, to feed with it – etc. However, I noticed it made him a very lazy eater. He didn’t try. Sure he had a cleft palate, sure it was harder for him to eat, but I knew he could do it. I wanted him off the NG-Tube, I could see he hated it as much as I did, and not only would he pull it out every chance he got, but he would scream every time we had to replace it. It’s not an easy thing to HAVE to cause your child pain or discomfort, regardless of if it’s for their best. Anyway – watching him become lazy eating, knowing that he COULD do it… I asked his Ped if I could take the tube out and just nipple feed him, yeah I realized he MIGHT lose some weight, but in the long run he would be eating on his own and be able to eat food when the time came. IF he was going to be a successful eater … I knew he had to get off that NG tube. His Ped strongly suggested that we don’t do it, but after a couple of weeks seeing him digress more with his nipple feedings, I changed him NG tube one morning, and he pulled it out, I put it back, and put him in his swing, then went to feed him and suddenly milk was all over – here he pulled out the NG tube without MOVING the tape .. WTHeck child you are getting TOO talented at this! That was it… I couldn’t put him through the replacing it again. So I put the milk in a bottle, and fed him. He didn’t eat well, but he ate. The 2nd bottle he did okay again. The next bottle, he did fine, cuz he worked up a hunger. By the following day, he was doing really good, and by the end of the week, he was eating like a champ! And officially OFF the NG Tube! Whoohoooo …

So I have problems wrapping my mind around the fact that IF we were to go the NG Tube route, he wouldn’t get lazy again. So I asked them to wait, to give him a chance.

Now he’s officially Failure to Thrive … did I do the right thing? I don’t know. I feel like I did, in the long run. BUT… there is that wonder and worry there.

G-tube isn’t under discussion right now, but if he doesn’t start to digest protein the way he is suppose to (or eating more of it) … I have a feeling that it’ll come back on the table.

This time, I won’t fight it…

He isn’t eating again today. He has a migraine again, but it’s not as bad as usual I don’t think. I know the migraine prevention medication is helping, I have NO DOUBT about that. It’s not going to curb everything.

I have moments where I really wish he could talk. He’s 2 years old and we’ve been playing this “guessing game” for years now and it’s not easy. Sure he can point… he can sign a few things, say (and when I say SAY I mean hum) … a few words. But he can’t tell us what hurts. It’s hard to watch him suffer. We are working on ALL of us learning ASL (American Sign Language) and it's not easy., but we're doing it. We are changing his sign for "all done" (which looks like you are opening a book - eh - kinda) that his therapists showed him, to the ASL "done" sign (it makes more sense). We also looked up "hurt" and a few other ones to work on him with. I'm looking for good ASL sites, so if anyone knows any I'd appreciate a heads up!

I love my kids, I will do what is right for them… what I feel is best for them. I just hate seeing them in pain, begging in their eyes, just for some help, and I have no idea how to help them.

Anyway – I need to do some research and such so I better get to that since Nathan is sleeping…

OH I almost forgot!!!

A couple of links to blogs that I want to share.

First off I want to thank Melissa over at "A Pocket Full of Memories and Thoughts" for the kind words she said about the blurb I wrote for my blog description, and the blog she just put up about Bullying because yesterday I decided that I am pulling Cal out of school next year and Homeschooling him.. (more on that later) .. and I urge you all to go listen to the song she put on her blog by Mark Wills called "Don't Laugh At Me" that I think a lot of parents of unique children would appreciate. It is a wonderful song! Melissa's daughter Isabella has Spina Bifida and is one of those wonderful lights that inspire many people!

Secondly - I want to send you all over to "Don't Bite The Dog" where Jayme's Mom talks about how she struggles with just the right answer in response to explaining to other kids why Jayme, who has autism, doesn't act the same way they do. It's titled: Well Kids, It's Like This... It's a great insight on something that a lot of us struggle with.

That's just two of the things I wanted to say :) Thanks for reading!!

MAY 7th VIDEOS (both Nathan & Kaedyn)

I already posted all these on my other blog A PAGE IN MY BOOK but I wanted to share them on here too.

Video 1 – Kaedyn and Nathan – Nathan is walking and he turns in this one – yay!! (It is short cuz the phone started to ring and I thought it might be Dennis)

Video 2 - … The Toilet Paper Roll Wearing Paci Stealing Toddler and the plastic grape eating infant! OMG I even sing in this one!

Video 3 - (this one is more one that shows his little quirks) … Starts off with the TODDLER RULES – if you don’t know them, you should LEARN them… it shows some examples of how he doesn’t respond, his temper fits, how he stands on his head, got maybe one spin in there I think – but in the end Kaedyn is being goofy ..

Video 4- who knew that a tongue could be such an interesting toy. LOL… Here is Nathan (listening) to a Blues Clues song .. he sorta does the “fish” sign on here – only two problems, it’s one hand and there weren’t any fish on TV … hummm…

Video 5: Nathan doing his thing with Blues Clues “Mail-time” Guests …

HERE are a couple of older videos from last week I meant to post also...

And here are two of Nathan last week that I hadn't posted yet... he's signing (I think) LOL...
(Cal is singing with him, and me going think - ha ha)

May 6 ~ Entry 18 (NDD)

Wednesday, May 6, 2009 – entry 18

Yesterday was so filled with … whatever, I have no idea what could *possibly* be in store for us today. Actually, it wasn’t much other then normal stuff.

Nathan got up and shortly after we had to get everyone in the van to take Calahan to school. After we got home, got Noah out the front door to catch his bus, we got Nathan’s “normal” routine going – meds, milk, couch & Blues Clues for about an hour before he is ready to truly get up for the day – however, the whole “taking Calahan to school” thing has thrown him off, he still enjoys his down time in the morning before being expected to perform like a monkey! Teehee… this morning was no different except for the fact that it is Wednesday morning, and at 8 am his Physical Therapist comes. Much to his dismay!

So at about 8am Katy comes and low and behold, Nathan looks at her like… “Excuse me, I haven’t had my ME time yet! You can turn right around and go home cuz you’re getting nothing from me.” And true to his word, eh… look … he was difficult. Katy and I talked some but over all, Nathan just wouldn’t give it up. So she left early … and Nathan claimed victory! :: sigh ::

So on the couch he went, and he had his ME time for about an hour, then I noticed he was down on the floor ready to play. We did a lot of playing with his kitchen and trying to say food names, or should I say – I said the food names repeatedly, drawing them out, and exaggerating sounds, and he looked at me like I grew two heads. Huh? Mom… seriously, I think you need some speech therapy .. your mouth seems to get stuck in certain positions and you just make funny noises. Yep, that’s how he was looking at me… with a confused devious glint in his eye.

He looks at me like that, a lot….

Eventually he wandered away to play with his Sissy's stroller (that the boys took over to play with) and he was walking with it (he takes it through the living room, through the kitchen, turns it around, and goes back) ... well he got back into the living room and tripped (or something) and got MAD cuz it fell on him, but then got interested...

So we had lunch and he demanded grapes with his hot dog. He is demanding grapes a lot lately. Now, he’ll go into the kitchen lay on the floor, kick the fridge if needed, until you come in and open it, then he goes into the fridge (not literally on the shelf, just in the way so you can’t shut the door is all I mean) … and either steals a grape himself, or points at it until YOU do it for him. Then he runs away happily with the grape until 2 minutes later he wants another one… then the process repeats, or mom just gets smart and gets him a bowl!

But mom is rarely smart … at least it’s debatable.. lol..

So … after lunch he actually wanted to nap, and so he crawled up on the couch and about 1:30 he was asleep…. And stayed that way until almost 4.

And after his nap, Dad and his brothers were home. He played all of them (separately) at times. Dad made dinner (Spanish Rice w/ Chicken) once Cal and Noah left to go see their Dad. Then we had dinner in the living room together ..

After dinner, and some playing with the animal puzzle trying to get him to watch me sign (say & make animal noises) animal names…. Which again, he just looked at me like I was cracked … Mom you are no Erika, stop trying, I’m not amused …though he did watch me do “Dog” with a smirk on his face…. but we tried, right? I have to look up a couple though … like Sheep, Donkey and Goat… they weren’t in my book.

After doing that, he snuggled up with Daddy, who crashed before he did, and I was up with him (Nathan, not Daddy) until about 10 when he FINALLY fell asleep. Yay!!