Wednesday, July 16, 2008

Doctors...again, Update~

Sorry, I couldn't get on here all day yesterday. So now for the update:

We got there at 12:30. We went down to Medical imaging, and they didn't have an order, so we had to go back to NS, to get the order. Which was fine, and it gave me the chance to tell Craniofacial, I was there, but would most likely be late for my 1:00 appointment.

So we headed back to Medical imaging, and got right back for the shunt series, which is just an Xray. Jack did great! A little leary, but did what the girl asked him to do. Then he got to choose stickers! She gave a choice of two, and then said, "Oh wait! We have Wall-E stickers too!" He was SO excited!! We haven't seen it yet, but he sure loves the commercials! He says..."WALLEEEEEE!!!", every time they come on, and squeals in delight. He was so proud of his stickers.

Then we had to wait for CT. As we were waiting, there was a little 4 yr old boy with his parents, grandma, and child life. They were talking about the CT, and trying VERY hard, to convince him, it was going to be fine! I talked to the Grandma, and she told me, he was having a CT scan, prior to brain surgery THAT day. They had found a tumor on his pituitary gland, 2 weeks ago. Needless to say, they were totally freaking out. I told her all about Jack, and how our NS's were the BEST!!

Well, he went back to have the CT, and came back in a few minutes, with no CT done. He was so scared. So when Jack and I went back, I told the tech that Jack has always been fine, and if this little boy wanted to watch Jack get his, that would be fine. So once we knew Jack wasn't going to freak out, they got the little boy, and he came to watch from the doorway! Jack was SO cute, and we were just blowing bubbles, and being silly. They have to hold so still, so the kids are wrapped in a blanket papoose style, with their hands by their waist. This little boy, could see Jack's left hand, so I told Jack to wave at his new friend. And HE DID!!! It was SO CUTE, his little fingers waving!! And the little boy waved back!! OH MY GOSH...it was so cute! Then Jack was all done and we had to leave, so I don't know what happened, but I hope, that Jack made a difference for that little boy, and his family!

Then we headed back for cleft clinic. It's held in the same clinic as Neurology, Neurosurgery, Cardiology, Ears Nose and Throat, Genetics, and a couple other specialists. It's very interesting. You sit there, and wait to be called back to get weighed, and such. Then you go back and wait for the Dr's to be ready for you! The interesting part, is looking around that GIANT waiting room, and wondering why others are there. I see older kids with clefts, and I want to run up and hug them. But I think that would scare them. I see kids that I KNOW what their Diagnosis is. I see new parents scared to death, that they are sitting in a specialists waiting room, with their newborn child. It's all a little overwhelming, to say the least. I try to talk with people, but we are constantly interrupted, by the Dr's! They are SO rude! ;)

So we go back for our first Dr., the Orthodontist. He hasn't seen Jack since January-ish. For some reason he pulled up reports on the computer, and the shunt series is right there. All I saw, was "shunt is stable, and functioning". So I asked him to pull up the CT. "Ventricles are 5m, no change from last scan." As I'm reading it from across the room, I see something that hit me like a ton of bricks.

"Stable, yet absent, or severely displaced corpus callosum."

WHAT!?!??! No, no, that was when his ventricles were full of fluid. Seriously, it HAS to be better now that everything is stable! Um no.

The NS nurse, told me NOT to talk to a resident about that, and to wait until we could talk to his Dr. Still waiting on that of course. But here's what I found. There's some great info on there. And here's a funny. I was just reading this info to DH, and 2 minutes after I finished, reading it, he says, "Jack! Don't put Parker's underwear on your HEAD!! That's YUCKY!!!" We started laughing, when I realized what I had just read... Challenges with social interactions due to difficulty imagining potential consequences of behavior. Seriously, how funny is that!??! We had a good laugh.

ANYWAY... the Ortho, said his under bite, seems to be getting worse-oh joy-but his prosthesis looks great! And the best news, Jack was SO cooperative! Opened his mouth when prompted and everything! He was like this with everyone! And when we left, he would wave, and do the sign for thank you! Seriously cute.

We talked to the speech therapist, who happens to have a daughter who is Emma age. They were in the same dance class last yr, and yes we knew that before we met on Monday! So she felt good about what we were doing, and what HE is doing. She, and all of them for that matter, were very impressed with the fact he can match my pitch singing! He rocks!!

Then we got to Plastics. ugh... sometimes, I should just keep my mouth shut. I know, he's a plastic surgeon, it's his job to find all the things wrong. But really now. And truth be told, I was the one pointing things out. One kind of cool thing, I was asking him about how the whites of Jack's eyes show under his pupils. He said it is caused by Jack's maxillary hypoplasia. It even has a name. Not that I can remember it, or even find it, but still, he named it. It's cool, cuz I have been saying it for a long time, and have people always say, hmmm...maybe it's your imagination. Whatever...see, I was right!

I also showed him Jack's trunk, and how is armpit is all funky. He asked if we had seen genetics. I told him the only syndrome he put Jack in, was Poland Syndrome. He said he didn't think it was Poland Syndrome. And we should really see Genetics again. Good grief. So the jury is still out on PS. But he also said, he wouldn't touch his arm or hand, he would refer us to a hand specialist. I told him we saw "Hutch" up at Shriners, and he said, "Oh, that's how I would have referred you too!!" It's so nice to be connected, with all the right people! :) I did call today, to schedule a followup, with Genetics, and their first appointment.... JANUARY 27TH!!!!! Good grief....but...we have connections, so I'm looking into moving it up!

Then we saw ENT, and he was happy with how he was doing. He did want a repeat hearing test, which went fine, and he passed, enough said.

So we are on track for hard palate repair, next summer, and he'll probably start an over night retainer, to help bring out his midface. THAT should be interesting. We didn't leave the hospital, until about 5:00. LONG day! But Jack was SO good, and happy, and genuinely happy to see everyone! And of course they loved him!

Now...while I have always enjoyed, "the diagnosis", I was quite rudely reminded, that Jack's not normal. And we all know how I hate that. See when we are hanging out at home, he's normal. Even when we went to Myrtle Beach, he was more "normal" than other kids there. But now to have two knew "Names" for why he's not normal, is just hard to take.

Then yesterday, I went into work for a little bit to help out, cuz someone quit, and DH was home. I lady came in to get some tickets, and she had her son with her. He had a big head, his arms were short, he walked kinda funny, his eyes were a little wide set, and I could tell he was developmentally delayed. He was so sweet, and excited to be coming to a show. When I was done getting her tickets, which she had gotten from a foundation through her sons syndrome, I took them in the theater, so he could see where they'd be sitting. She told me he had a syndrome of which I don't remember the name. Which caused his large head, short statue, being delayed. It was one I hadn't heard of...shocking I know! Anyway, we talked for a but, and I told her about Jack. And then they left. As I went back to work, I was overcome. I kept thinking, maybe Jack will be like that. All the things that make him cute and unique now, how are they gonna look on an 8 yr old, or a 15 yr old, or an adult. I just started to cry. The poor guys I was working with, didn't know what to do. He was so sweet, "You Ok??" I said, "Um no, but I have to be." I just quickly gained my composure, and moved on.

Now, I'm not saying that this little boy, who was 8, looked funny, or that everyone could see he looked funny. But I noticed, because he had some of the same characteristics as Jack. And this boy didn't have a cleft. Since then, I've talked to a couple of very wise people who told me not to worry a future I have no control over. I know, I know, but aren't I allowed a few moments here and there?!??!

I am feeling better today, and if you're still with me, thanks! Just have to work on today, and tomorrow, and not let the "NOT normalness" get to me...ya right. I'm trying though, and isn't that what counts!?!?!

I also have been thinking about the people I met in the last few days. In all instances, I should not have been where I was, to have met them. I know, I was sent there, at those times, so we could interact. I can't help but wonder if I had the same effect on them, as they did on me!

6 comments:

Lisa said...

Wow, you had quite the day. I can't believe that genetics is booked till January!! Wowzers!

As you probably have read, Elisabeth has ageneisis of the corpus callosum too. Right now, it's not something I have focused too much on. There are so many different things contributing to her developmental delay. But I would have to say that lack of eye sight is probably the biggest so far.

Anyways, I think we are pretty lucky moms to have these special children, don't you? Take care and enjoy that sweet little boy!

Mandy said...

Caleb too has agenesis of the corpus collosum, which I think has had more impact on his life than the hydrocephalus. Glad to hear the ventricles look good still, I know that constant nagging fear that comes along with things such as shunts. It is also too bad we don't have people we can put our complete trust in, my favorite question about Caleb always is "What do they say" who the heck is they????? When you find out let me know. You are an amazing person who has the ability to reach out to those around you and comfort them in hard times, I wish I could be more like that.

Lisa said...

Normalness depends on how you define it, sweetie. If measured against some textbook definition of anatomy, then basically none of us are normal. We've all got something about our anatomy that's a little off. It's just that with some of us, it's more obvious than others.

However, if you define normal as a loving little soul who likes to jump on his bed and put his brother's underwear on his head and give kisses and mug for the camera and in short, act just like any other little kid his age when it comes to the most important things -- then Jack is a perfectly normal little boy.

Lisa C.

Molly Sue said...

When I met Alex, he was six, and they had no diagnosis for him. NOw he's 22. No, he isn't as cute and adorable as he was at six, but he's still Alex and we all still love him, regardless.

Jack is just Jack.("Just Jack"..I need the hand gesture, but this is the internet) We will all still love him, regardless.

Diana said...

I think about this all the time. Not only about how she will look at 20 instead of 8, but also how difficult it will be to take care of her. How to move her around. How to get through puberty (I have to be resuscitated every time I even think about that word!). The thing I'm most grateful for is that days come 24 hours at a time and each of those hours has 60 minutes in it and so on. Some days, I get smacked in the face with a ton of information and I can't remember the minutes before the minutes I'm in. But, as always, I am the same person and truly she is the same person that we were when we went in there. It's just a new name a new nugget of information to learn about, ponder and act against. Sometimes, it's one day at a time, and sometimes it's one minute at a time. I'm glad for every minute I get to be Becca's Mom. :)

Cindy said...

I just want to give you a big hug and tell you how great I think you are doing as a mom!!
Evan is 20 and has along with his spina bifida and hydro has partial agenesis of the corpus callosum among other things. I remember when I was pregnant and we found out about the spina bifida. I didn't really care if he could walk or not, but I wanted him to be mentally capable. But, through out the years I see things differently now. Evan is who he is because of his mental capabilities or lack thereof. I can't imagine him any other way. I truly feel that his lower congnition (I never know quite how to put that and don't want to offend) is what keeps him safe from getting depressed about his situation. Let me explain. Evan is happy with who he is, he has never complained about being disabled. It is amazing to me. I think that he just doesn't know or isn't aware of all the possibilities that could have been if had a higher IQ. I think the Evan's and Jack's of the world are just the way they are suppose to be and that is normal!!