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 ::
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.
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...
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!
