Sat Jan 29 2010

"Dude, I'm telling you the coast is clear... what do you mean you don't have the keys? Oh I think they're on my shoulder...my bad.""

Well our little Boogie is getting his first tooth! BJ and I have decided it needs a name. So without further adieu, may I introduce to you ,our readers and the entire world, Gilbert. You can't really see him as much as feel him but, he's there! Gilbert is peeking out of Kye's bottom right gummyness. A fond farewell to my favorite gummy smile... Not much to report. We're kinda back to square one again with the Lung/diaphragm issue. I think he's stumping the doctors! Already causing trouble! At first we thought the Lung was hindered and slightly smaller as a result of the paralyzed diaphragm. Now that they've found the back part moving, it could mean that the diaphragm is hindered by the lung. Confusing huh? Well we still don't know whats causing all of this. Every test seems to be canceling out the previous conclusion or at least blurring the line. Our next step is going to see a geneticist. Not sure whats going to happen there...so we'll see. Otherwise he's healthy, happy, and eating like a champ!

Monday Jan25

Well the ultrasound showed that the back part of his diaphragm is moving. Don't really know what to make of that information. She said an x-ray will only show the front so theres no way to know if it's always moved or if its a new development. The front of it is thin in spots which is nothing big, we knew that was probably the case. She didn't share anything about the kidneys, I'm going to assume thats a good thing. Here's our little Boog right before we walked out the door. Happy little camper! We've decided to do sign language with him. I've done a lot of research, both online and in speaking to people in the childcare industry and I think it's right for us. It'll avoid frustration when he knows what he wants/needs but can't yet tell us verbally. We're going to use ASL (American Sign Language) so when he goes to school chances are the teachers will know it. Plus it'll actually be a second language for him, he'll be able to talk to the hearing impaired! Awesome huh! Well we're not teaching him EVERY word in sign just the basics...I've included a chart so all of you will know what his signs mean! We have one on our fridge. We're suppose to say the word and sign it whenever we do the action....this is going to take practice on our part. I guess we'll see if we can do this! I know he can!!

Sunday Jan 24th

Daddy and His Boy

So today was baby food day. I went to the store and bought fresh veggies, zucchini, sweet potato, and butternut squash(left to right ;') . Daddy used his very helpful baby cook book to whip up a quinine fit for a baby king! This, that you see here, should last him about 48days! All fresh!!

So we're all doing our part....Daddy makes the grub and Momma makes the drink ;-)I have to say, Daddy's waaaaay messier!!!
Well we go get the ultrasound tomorrow. I don't expect any earth shattering news.

I know the Boy is gaining weight,he is really beginning to give me a work out!!!!!

Monday Jan 18

"Do you really think your cuter then me?"

Just got back from the orthopedic doctor. She said there is a pec muscle, it's just smaller then the other one and it may mature as he does. It's a very minor issue if at all. She watched him playing and said he's not hindered at all by it and we shouldn't anticipate any problems! Yeaaaa

I was right in my assumption that what you see is what you get too. His arms and hands are symmetrical and thats the way they'll stay. Next is the ultrasound...

Per Grandma Byrds request here are a few pictures I don't think I've posted

"If I hold really still, they won't know I pooped..."

The next two are some we had taken by Creative Photography in November...

And finally, remember that BIG monkey from waaaay back when?? I put the original picture below to jog your memory...


Yep same monkey

Sun Jan 17

I was pretty convinced that Kye wasn't my baby. I thought the Boy looked nothing like me. I could see Zeke in everything he did..especially whine...ha, I couldn't resist! Anyway, Here are a few pictures of baby Momma and baby Daddy. Totally proves he's a perfect blend of the two of us...

I thought about labeling them but even if you don't know our parents I thought the penis would give it away.

Sat Jan 16

Really can he be cuter?

Well.....the doctor called me the next day, very prompt, he gets a few points for that!. He said Kye may have Poland Syndrome. If you know me you know that I devour any piece of information I can find on these types of issues, I NEED to be informed, I NEED to know the details, I NEED to know what to expect and I need to know what the possible outcome may be. So from everything that I’ve read here’s my synopsis.

Poland Syndrome is a rare congenital disorder (present at birth) that varies drastically in severity. The usual indicators are missing or under developed pectoral muscle (Major, sometimes minor), unilateral (same side) webbed and/or small fingers, short forearm, asymmetrical nipples, diaphragm issues, other interior chest muscle issues, shoulder blade deformities and in extremely rare cases the kidneys and digestive tract are affected.. There are more symptoms but, these are the most mentioned. It’s caused by a disruption in the blood supply to that side, usually the right, in utero at about 6 week’s gestation. They don’t know why it happens, some sites say its not hereditary some say studies have shown a link between family members. My dad was missing his right pec muscle, could be coincidence I suppose. Anyway, to be diagnosed with it a person has to have at least two indicators, Kye has the obvious diaphragm problem and missing/under developed pec muscle, there are no other visual indicators. If he wasn’t born with it, it won’t develop later in life, at least that’s how I understand it. To look at him you wouldn’t even notice the pec muscle to be honest and he doesn’t favor one arm over the other. He’s putting everything in his mouth equally with both hands!!

So, we’re going to see an orthopedic surgeon on Monday regarding aforementioned pec…;-)… The following Monday we’re going to get an ultra sound of his diaphragm (to get a better look) and kidneys as a precaution.

We’ll see as we go. I’m pretty ok with all of this. He’s no different, I knew he was missing that muscle now there’s just a name for it.

Besides that, he’s doing great. He’s 11.15 pounds. I’m sure his weight will pick up after surgery but he’s still come a long way! He’s eating big boy food, right now its sweet potato and oatmeal. He loves them both!

OH and I think he’s got green eyes!!!

Monday Jan 11th

Just got back from seeing the Pulmologist. He said surgery is probably the best option but he wants to wait till the cold and flu season is over, in an effort to keep him out of the hospital and away from sickness for as long as possible. He's doing good so waiting till May isn't going to hurt him. After I explained the upper chest issue to him he seemed a little relieved. Before this he was kind of looking for a reason for the diaphragm paralyse. One theory was a muscle disorder, (yea, this was the first I heard this) but with this discovery it seems to be an isolated issue. Which is better. So...he wants to do some research, talk to a few other doctors, the surgeon, etc..and he's going to give us a call with more information or thoughts.

I'm pretty disappointed. He's the best in his field, or so I'm told, yet it seemed like he barely glanced at Kye's record before our appointment. As he entered the room he asked me who ordered the fluoroscope...ummm you did Doc. After I decided to stop filling him in on that particular discussion and move forward he asked why it was ordered...really??? I know I can't expect him to take a personal interest in my child. He has a lot of other kids to look after but dude, read the chart before I come in. Re-familiarize yourself with the case. Especially with one thats fairly rare, like my son's. We're trying to decide what our next move should be. I expected answers and all I got was more waiting. Very frustrated at this point.

Sunday Jan 10th 2010

Well we go see Dr. Choo-Kang tomorrow. I think we're all a little nervous... It's ok Kye Momma and Daddy'll be right by your side.I'm not really sure what he'll say. I'm almost positive he'll recommend surgery. He may say that he's progressing just fine (gaining weight, maturing, etc...)and choose to wait longer. I donno. I'm not going to be happy either way to be honest. Surgery means a hospital stay and no doubt a ventilator, which equals a miserable, pitiful little boy...which leads to a heartbroken Momma and Daddy. The other route, to wait is, I feel, just dragging out the inevitable and causing more stress on his body. You can literally see more of an indent in his right side when he inhales and his rib cage seems to be higher on that side too. I don't know if the 'pec muscle area' has anything to do with it either but theres for sure something going on on the right side of his chest. I feel the sooner we start fixing things the sooner other things will rectify themselves...at least I hope. It could be that his whole right side is just.. weaker or compromised for some reason and one issue has nothing to do with the other, I don't know. I just want him to be more comfortable. I wish we were on the other side of this surgery. Can't we just fast forward all the crappy stuff or maybe sleep through it? Maybe the doctor will give all three of us a sedative that wears off when he's all healed and back to normal! On a lighter note, Kye is talking like crazy! He's discovering new octaves everyday! His new thing is a super high pitched squeal. Ah-dor-able! He's also interacting more and more, having conversations and such. I've been reading 'Brown Bear, Brown Bear' to him at night, it's pretty cute, he 'helps' me turn the pages and sometimes he talks to the animals. Here he is playing on his foot piano and shaking the rattle. Boy's got talent!

He's doing great with the solids too. We get to introduce him to a new one in a couple days....maybe sweet potato or banana..???

Friday Dec 8th

So our computers are both messed up and driving us crazy. I'm at work now and will have to make this quick. Kye is doing great with 'solid' foods. Daddy has a baby cook book and has been making his grub from scratch. So far he loves zucchini! He's also eating rice cereal but, it's making his poo paste-like and difficult for him to pass so, we're (with doctors permission) going to lesson the cereal and add more 'solid' to his diet per day. We're going to see dr. Choo-Kang on Monday, I was able to move the appointment up after the x-ray was done. I think I'm voting for surgery. I hate the thought of seeing him back in the hospital with a ventilator but, I feel it's necessary for him to have a better life, as far as breathing goes.
We've got an appointment with Parents as Teachers coming up, which I am so excited about.
We're also going to see an orthopedic surgeon about the possible missing pec muscle.

Our pc's are down! Our Internet is sketchy! So here's a quick update. The Boys diaphram isn't moving. We go see his Lung dr on the 11th...