Sunday, December 20, 2009

NDD - December 20


December 20 ...

Nathan has this habit of either going to get my camera off my desk or pointing at it and whining until I give in and grab it.

Why?  Because he's a vain little bugger stinker ... and he insists on me flipping the LCD screen over where he can see himself and then he makes faces and cracks himself up.

Literally cracks himself up...

So he would grab something (first the helicopter above) ... come over to me and point insistently until I finally gave in.  Then he grabbed some glasses...   Yep - yep - that's right. 



Then I put the camera back after a couple of pictures and said "ALL DONE" ...

So he came back with the bucket ....






Then Noah came into the room and he wanted in on the fun....  Nathan, DID NOT LIKE THAT AT ALL... he does NOT like sharing his spot light...



No, Noah isn't being mean to him... LOL.. it looks like it though, and on plenty of occasions he IS mean to Nate, but this wasn't one of them...








Here is a video of the silly billy today...



He has had an okay day, other then being very needy and demanding.  He spilled his juice box all over him so that he would get his PJ's changed.. LOL.. he then took off his pants and started crying cuz they were wet.  But right now he fell asleep, he didn't take an afternoon nap so he crashed right after dinner (of which he barely ate) ...  I'm not sure if tonight is going to be one of those nights where he sleeps all night or if it's going to be one of the ones that he's up at 11 until 2.  Maybe he might be up at 4am.... :: sigh ::  Who knows...  

December 14 - 19th - NDD

I am starting up Nathan's Daily Diary again because as we are coming into the winter season here at home, complete with tons of snow on the ground, it appears that Nathan's headaches are coming back.  So I need to start this up again to start keeping track of everything.

December 14...


We read a lot that morning, not only me reading to him and Kaedyn, but him sitting like this reading too.  It's sweet when he does this, he doesn't do it often anymore but I always love seeing him with booked in his hand and wanting to be read to.  The day before had been Daddy's and Mommy's Anniversary and we had some Welchs Fake Champagne, the night before Nathan had taken an interest in my glass, including dipping his little fingers in it and sucking the juice off them.  So on Monday, when Mommy and Daddy had another bottle, we gave Nathan a little cup with some.  He calls it "Bubbles" and he enjoyed it.  It's the first time in just about forever that he would drink anything OTHER then Chocolate Milk!

A little while later, more in the afternoon he decided he wanted his Tigger Costume on... he'll leave it on all day if you let him.

And he's constantly carrying around the bug lights too, of course he leaves them on which means they run out of batteries really quickly...  here is Kaedyn in the glow..


Tuesday (12-15) we didn't have an oven so we did a lot of snacking and stuff.  I ended up running out and getting some groceries when I got a chance to and I took some photos of Kaedyn drinking (or thinking he was going to) 2-liter bottles of Orange Soda.. but none of Nate to share.  LOL..  we were having an off day.  I remember Nathan was really tired all day and when I finally got him to take his nap, he woke up in a horrible horrible mood.  He kept putting our hands on his head to rub it, and wanted me to cuddle him, so I did.  I think, even though he had a long nap, he went to bed kinda early for him. 


Wednesday (Dec. 16)

Nathan has been tolerating Kaedyn more and more, and with that toleration also comes the bickering...  the fighting, the pushing, the hitting, the hair pulling oh my!  But when you catch the sweet moments of them sitting together, it makes all those moments worth it.  Because you know they are going to totally be the type of brothers who stick up for each other and tell other kids "No ONE picks on my brother by ME!"  LOL...

We got our new oven on Wednesday and both babies were in love with watching whatever is in the oven (that night Pizza) .. our old oven you couldn't watch through the oven door so it's new for them, and both of them love to watch Dennis (and sometimes me) cook...

Daddy says you know you are a future Chef when watching what is in the oven is better then what is on TV!

We had gotten a big container of fruit - and it is hands down Nathan's FAVORITE thing to eat.  Fruit of all kinds.  Mostly grapes, and bananas.  So there was a bunch of grapes in this container, some melon too..  this was his way of asking me for more... LOL...

He ate really well this day.  Most days we give him food after food after food item and he either barely touches it, doesn't touch it at all, or if we are lucky, he eats half of it.  But he kept coming back asking for more fruit, and as always - if Nathan asks for food, he gets it. 

Thursday (Dec. 17) - We did some crafts at home ... Nathan was all excited and helped out.  Er... sorta helped out!  He tried... LOL...  We were making Light Bulb ornaments for the tree. 



I was trying to keep the hot glue gun out of his reach but at one point after I was gluing something, he reached over and grabbed the metal part, the hot part, and started crying.  So after some hugs, kisses, a cold compress, more kisses, he was okay. 

Batman all Decked out for the Holidays!

After awhile we had to stop because Kaedyn got up and little hands, tiny beads, don't mix.  Bad enough keeping track of Nathan, but Kaedyn is a brute and pushes his way everywhere ..  so we put the stuff away.  Then Nathan took his nap and woke up in a terrible mood again.  We tried to give him dinner (chicken nuggets and fries) but he just wasn't interested at all.  So we opened gifts (family tradition) ....




After we did that, Nathan wanted to just cuddle and had his head rubbed again.  Eventually, he fell asleep.

Friday- December 18 ...   It was a rough day for all.  Mommy had started some new medication and she wasn't doing so well Friday (side effects) ...   So it was a very sleepy lazy day.  Nathan ended up taking a long afternoon nap and when he woke up he screamed for an hour before Mommy finally got him to settle down by putting a cold washcloth on his forehead (something that works when Mommy has a headache) ..  Even Kaedyn was being a sloth ...   











Once Nathan saw the camera he started grinning!  Who'd'a'thunk 5 minutes before he was screaming!




Saturday December 19 ....  Dragons like pears ... 


Yes, apparently Dragons like pears!  Nathan played most of the morning with just his Little People and Mr. Dragon there had a lot to eat!  Nathan fed him a lot complete with eating sounds "num num num" ...  Mommy & Daddy had a "meeting" to go to Saturday morning so Calahan babysat.  When they got home, he got this ugly teddy bear.  (okay it grew on me when I saw how much he loved it)



It - overall - seemed to be a good day for him.  He ate okay, he didn't scream when he got up (but the blinds were down) ... and he played great. 

Saturday, December 12, 2009

Update on Us


There hasn't been too much going on here with medical stuff.  At least nothing "abnormal" ...  I still see a ton of signs pointing my heart in the direction of Nathan having a high functioning form of Autism.  More so now then ever with him wearing socks on his hands and his being very particular about certain things is amazing.  We watched a movie with him awhile back and it was the first time he had seen it.  It's called BABYS DAY OUT ..  it came out back when Calahan was a baby and is on the same lines as Home Alone...  Anyway, we've had the video since Cal's first Christmas.  So Nathan would get very scared and concerned over this baby's adventure, and he would scream during the scary parts and yell when he saw the "bad guys" ...  Anyway, Nathan had his first surgery to fix his hypospadious on November 2nd.  It went very well.  They managed to get his right testicle down and started the surgery with his urinary tract.  He ended up coming home with a catheter that he was suppose to have in for a week, and a nice 4 inch incision across his belly.   However he was wetting his diaper since the first day, Dennis thought it was sweat because the boys sweats so bad, especially while sleeping.  But I didn't think so.  However he was getting urine in the bag and the following day he wore the same diaper all day.  But a few days later, he woke up in the morning, sopping wet diaper and barely anything in the cath-bag... so we called his Ped Urologist (2 hours away) who said call his Ped to get it removed who was full and said call regular Urology in town who said they couldn't do it cuz they were full .... so Dennis took him to urgent care to get it removed.  He has to wait 6 months before his next (and last) surgery for this.

Calahan also had surgery in the end of October.  He had to have oral surgery to get all his teeth and cavities filled, so he can get his braces ..  see he has a horrible time with the sound or vibrations of the drill in the office and everytime they would try to fix this tooth of his, he would get through the numbing shots no problem but when it came to the drill he just couldn't deal, so after several attempts and a couple years, the tooth broke and was now unrepairable.  So it was the only way to get the work done.. it was tough on him but he did it :)

Noah has been doing well, and Kaedyn's only issue is his extremely bad eczema :(   

Tuesday, December 8, 2009

Prayers for a Family .. please read..

The Brother and SIL of one of my good friends is going through a rough time.  The whole family is.  If you have read my blog previously, you know that I have 2 kids with medical needs.   Noah and Nathan.  Nathan's medical issues are wide spanning and some serious ones.  Noah's started out pretty dang serious but have leveled out.  I share Noah's story as much as possible.   At 18-19 weeks I found out that the baby I carried had a rare genetic disorder called Mosaic Trisomy 16.  I was told half way through his pregnancy that he wouldn't survive the pregnancy, and if he did, he would have very little quality of life, and was told I should "interrupt" the pregnancy.  Took me a moment to realize he was suggesting I get an abortion.   I looked him in the eye, and said "that's not an option."  At 33 1/2 weeks of pregnancy Noah came into the world weighting only 1lb 12oz.  Because Noah doesn't have the extra chromosome in all of his cells, he had a chance.  If he had been full Trisomy 16 - odds are he wouldn't survived through the 2nd Trimester, if even into it. Regardless, I knew there was a chance that my hope that I clung onto with every fiber of my being may not happen, and I would end up not bringing a baby home.  I had a hard time through the pregnancy buying anything for him.  So I didn't.  Others did, made sure that I had what was needed to bring him home, but it was hard.  Miracles happen, and Noah is one of them.  Today that little baby who wasn't suppose to survive is almost 8 years old.  Yes, he has medical issues, I watched him fight for his life in 2007 the same week his baby brother Nathan was born in the same hospital he had been born, and put in the same bed in the NICU to protect his frail 3lb 4oz body...  but Noah is strong, he's a fighter, and I never gave up on him.  I had fears and doubts that crept in, but never did I give up hope.  Every ultrasound he would wave at me, as if to say "I'm right here... I'm okay.."

With all that said...... my friend's SIL found out that their baby has the characteristics of Trisomy 13 or Trisomy 18.  It breaks my heart, I've been there, in those shoes..... being told there is no hope but having the hope regardless because there is no other choice for me.

I want to ask you all who read my blog to send prayers and support their way.  To PLEASE keep this family in your hearts this season and  believe that a miracle can touch them!

Mom's Blog is here Pearl Music

I'm going to end with a very emotionally faithful video that I've shared before of Eliot, a miracle born with Trisomy 18 and a tribute to his life and how he touched those around him.