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!

Doctors...again

Seems like forever we have been to any doctors. For Jack at least! But today, was have craniofacial clinic. If you don't know, it's when all the doctors on the team, get to see him. It's a great concept in theory, and it was rather entertaining, when he was a baby. But he's two now, and must not be contained. oye...it should be an interesting day. And for the first time, I am taking him alone. I usually take DH, but I THINK, this one, will be just review, and checking up, not much info...I hope, anyway, now that I told DH not to come. He's taking so much time off work for our other craniofacial stuff, I didn't think this was worth it.

Also, you and I -;)- have talked about the fact that Jack's shunt is coming up on a year old. When we landed in Atlanta, he had a horrrible time. He was crying, and crying, grabbing his tummy, and did the sign for hurt, over and over again, over his forehead. I called NS and they said, it's very commen for kids to have trouble with the change in altitude(we went from 3000 ft, to sea level), and are more sensitive, to a change in pressure. And just to watch him. Well, once we got to MB, he was fine, like nothing had happened. He did struggle on take-off, but it could have been cuz he didn't want to wear a seat belt. I don't know. And coming home, he was fine.

But ever since then, he has been acting strange. At least daily, or every couple of days, he tells me his head hurts. And I catch him sctratching his forhead, in the same spot, right above his eye all the time too. And he's taking really long naps. But seems to be fine, when he's awake. Ugh... So I called the NS office, and told her all these things, and told her we would be up there on monday, and can we hop over to CT, and just check.

She said fine. I kinda hate that too... They were supposed to tell me, I'm overreacting, he's fine! But then of course I'd be annoyed if she said that to me. *rolling eyes* There's no happy medium is there??

I also think it could be his eyes. I have thought for a while he might have an issue, with depth perception. He won't step on something, he can see through. For instance, the crack in an elevator. He pauses, and steps over it. Then one day, we were at a park with a slat bridge, and he refused to walk on it. Then...in MB, he refused to walk on a marble floor. I took pictures so I could show, YOU, and a doc, if I need to. We walked across that floor several times a day, he refused eveytime. And not just refuse, he was honestly scared of it. He would shake and cry. It was very interesting.

So...we're squezzing in a CT scan, along with seeing 6, I think, different doctors. I did make an appointment with an opthomologist, but it's not until august.

Wish me luck, I'll let you know how it all goes!

Updates and thoughts...

I've had so many deep thoughts this week, I realized I haven't given any updates! So here goes...

On being a guest speaker:

It went great! It was so fun. And people had really good questions. It's funny how when you tell a story, you don't realize what you've left out. Some were medical questions, some emotional. The professor asked, "Where do you find your strength?" How's that for a loaded question. The number one thing I said, was FAITH. Faith that he would be ok, faith that we would be able to handle it, if he wasn't. I also said how having support of family and friends makes a HUGE difference, and support groups too. I would totally be in the corner, sucking my thumb(to quote a friend) if I didn't have the support of those who have been there done that... They loved the video. I turned off the music, and let it play again, while I answered questions, so they could see the pictures again. They liked it, I think.

So, of course I forgot a couple of key points, but the most important one...not to terminate based of prenatal findings, I remembered. And, I told them about Early Intervention and how important it is, and how much they have helped Jack.

It really is amazing to me, that not only did I do well, but wasn't really nervous. Anyone who knows me can attest to the fact the old me, would NOT have done that!


On being the Sacrament Meeting Chorister:

It's going really well. So far. We've all been there together, it's been nice. Last week, Emma sat with me for the first two songs. She was cute, and so excited to sit up front! I've also had at least two people say..."SURE, I'd LOVE to sit with the kids!" One friend even said, "You don't even have to ask, I'll just do it." SO nice!!! It's so fun to stand up in front of everyone, and see my favorite people smiling at me! I also LOVE to sit up there, and watch Jack. He is so cute, and I love watching Steve with him. He loves Daddy so much!


On Emma's broken arm:

She's doing great! It smells, and is filthy, but she really isn't complaining much. She gets it off, a week from Monday. If you missed the picture before, here it is. She was SO adamant on NOT having her picture taken. She has her own mind, if you didn't know that already! So this one, I snuck in!!

She's been so excited to have people sign it, and shows it off all the time!!

She's even been great about taking a bath, she just puts her arm on the side of the tub. She even does a good job washing her hands!! I'm proud of her, she's been great! Although, her follow-up with urology, is this week, SO dreading it, I can't even tell you. I'm going to call on Monday, and see about some"don't care drugs". ugh


On the boys and school:

Nick is doing GREAT. His IEP is the BEST thing we could have EVER DONE He is struggling with old issues in a couple of classes, but the other 4, he has an A in! Math, the reason we even STARTED the IEP process, is going great! He has lots of extra help, and has had two tests now, and got an A on both!! He LOVES Jr High and Young Mens, and is just a busy little bee. He always has something going on. It's so fun watching him grow up!

Parker is doing great too! He's loving 4th grade, and has gotten really great about taking his meds, ON HIS OWN!!! YAY! Such a triumph! He's really growing up too! He does hate getting left behind, when Nick is off being "older". But that's life right! I think it's my fault. When they were little, they came as a set. They did everything together. So I recognize, he doesn't like being left behind. Hopefully, he'll be over it by the time Nick goes on a mission, or at least when he gets married! I picture him running after the limo...screaming...WHY CAN'T I COME??!! Ok, don't tell him I said that!!! *grin*


On Jack:

He's doing fine. We have another CT scan, a week from Monday. I think it will be fine, but who knows. One thing I am concerned about, is his under-bite, seems to be getting worse. His bottom teeth, completely cover his top two teeth.the middle front ones. I don't think they would do anything now, but it just adds to my worry, ya know? And his ankles are just getting worse. Oh my heck. We are currently waiting for a physical therapy consult, with our old PT, from early intervention. I'm tempted to just call up to Shriner's, and make an appointment. I think I'll wait to hear from Mike, and go from there! His OT, really wants to get some ideas, and helping him walk with his legs straighter. He walks so well, but with his knees bent. His hamstrings are pretty tight, which has always been an issue. So we'll see how that goes!


On ME:

It's been a week now, and I think the meds are helping with my mood. But I've also been really busy this week, with things that are good for my mood. If that makes sense. But... I never, at one point, didn't want to do anything. Ok, maybe a little, but I was able to overcome it, and go for it! That's HUGE!! I'm so glad I got off my butt and did something about my funk!

Also, MANY people this week, have had SO many great things to say. I encourage you to go read the comments. I especially want to thank Lisa, and Dan. You guys have helped me SO much lately. You ALWAYS have the right thing to say, and REALLY support me in everything I do. And have helped me see how great I can be! Even though I tell you, you are are mean(all the time) ;), I really appreciate it. Thanks guys!! I LOVE YOU GUYS...more than you'll ever know! I'm so luck to have you both in my life! And Steve has been great lately too, helping with the kids, and being willing to let me loose a few times. That is a GREAT mood stabilizer, getting out of the house!!! Thank You, Honey! I LOVE YOU!

Well, that's it for now. Lisa dragged me to a conference, and I really want to tell you about it, but I'll save it for tomorrow! :)

Oh, I also added another "Kid-ism"(scroll to the bottom of the page), and you can see all my Youtube videos, under those! Check it out!

I jinxed it...

What a long FREAKIN day!!

The MRI went GREAT! We got to stay in the room, while he was getting it. The MRI itself, is LOUD! They plug the child's ears really good, and gave us some ear plugs too. It's actually quite musical. It took several different scans, and each was 1 minute, or 2 minutes, or a variation. And each scan, had a different rhythmic pattern. Maybe I was just tired, but I thought it was really cool, and very funky music-ish.

We then went to recover, where he just slept. They told us to expect him to sleep for about an hour and a half, but he was awake, in like 40 min. And woke up, like he'd been taking a nap. When he saw me he even smiled! HE kept looking at his thumb, that was glowing because of the pulse ox. For the first couple of hours, he was pretty wasted. He would try to walk, and fall down. He couldn't even sit, he'd just fall over! It was cute and sad!

Then we went to see the Neurosurgeon. Did the general head measuring -53 cen., and how's he doing. Asked how he was developmentally. I said, he was walking, not very good at the moment, but usually. And how we thought cognitively, he was great.

Then he pulled up the MRI on the computer. As well as the CT scan we had done back, Memorial Day weekend, when he was sick. His ventricles, are significantly larger. Since the END of MAY!!

*sigh*

So we went to get a shunt series(xray of his head and tummy) done, to make sure his shunt wasn't broken. Like kinked, or had come loose, or just plain broken. Luckily, it's not broken, but it's not working. It's malfunctioning. He asked if we noticed if he was acting weird. I couldn't think of anything. It's hard to tell what is the difference between teething(which he is)...toddlerhood(which he is)...sleepiness(which he gets, when it's time for bed)...ya know? I had been thinking he was teething, I even gave him some motrin the other night! He has like 3 teeth trying to come in!! I don't know. It's SO frustrating.

The NS(neurosurgeon) said he could schedule surgery tomorrow! ugh I asked if he felt comfortable waiting till next week, seeing as this is a big week for Nick, with "Jr High starting" events, starting on Wed.

So, we are scheduled for next Tuesday, the 21st. He will be admitted, at least over night.

Ugh ugh ugh...

It's the second day of school for Parker, third for Nick.

After we scheduled it, I realized, that we had a follow-up, to see if Jack should get ear tubes, on the 27th. I was just picturing going in there, and him saying, it looks like we should put tubes in.
So I had a horrible time trying to relay the message, to the ENT's staff, that he was having surgery, and would he consider looking at him before hand. I had to take Steve to work and come back, but the ENT, decided, without even looking in his ears, to put tubes in. 96 % of caucasian kids with clefts, need tubes. He said he'd rather take advantage of a surgery, and Jack be in the 4 %, then have to go back in, in the next couple of months again. And I completely agree. Ear tubes are a simple procedure, but a procedure nonetheless.

Oh, and since there is now fluid built up, we still don't have a clear picture of his stupid brain.

grrrrrr...

So Jack is having a Shunt Revision, and ear tubes placed on August 21st.

And I'm NOT saying...ANYMORE...he has NO procedures coming up.