Monday, July 21, 2008
I did decided though, since we were already planning to be gone yesterday, we would stick around town, and stay in a hotel. I picked Crystalinn, cuz they have free hot breakfast, and there was one close to what we wanted to do today. I had coupons for Holly-wood Connection(an indoor amuzment park for cheap people) to get all of us in free. The kids had a BLAST, and as always LOVE going to a hotel. DH, had to work, since he was in town, so just the kids and I went. It was SIGNIFICANTLY cheaper than driving to Vegas, and closer(15 minutes), and they had a ball. Isn't that what counts!? Of course we didn't get to go to the conference, but we still spent time together.
We took TONS o pictures, but I need to get on a different computor, so it will have to be tomorrow. I just didn't want to world to think we were in Vegas, when we are sitting on our butts, in Utah! :)
Get excited for pictures.......... :)
Thursday, July 17, 2008
She was so excited in the morning! Not only had the tooth fairy left her money, but she also wrote Em a note, and told her how proud of her she was for being so brave!
Well last night, Nick had a molar fall out. Emma was SO excited for him!! Moments later, she came running in to me, SOBBING!!! "Nick said the tooth fairy's not real!"
So I told her that Nick may not believe, but that doesn't mean she can't! So she decided to write the tooth fairy another note,
telling her, that Nick had lost a tooth, and that she could have it. Apparently,
Well...this morning, there was a dollar and a note from the tooth fairy!!
Nick was not a bit happy, and Emma has already spent her dollar!! Serves him right I say!!
Wednesday, July 16, 2008
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!
Monday, July 14, 2008
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.
Saturday, July 12, 2008
Anna wrote in her blog: "I'm reading a really good book right now called Eat, Pray, Love. There is a part in the book where she is having a conversation with one of her Italian friends about what their word is. Trick is, it has to be a verb. It would be easier if you could chose an adjective, but that is part of what makes this interesting. Her word is SEEK. It made me think, "what is my word?". It came pretty quickly to me, my word is BECOME. I decided to look up the definition in the dictionary to see if it equated to what I was feeling. Sure does. Become: to grow to be; change or develop into by growth (i.e. a tadpole becomes a frog) or (Anna becomes a teacher, more compassionate and stronger). Anyway, what's your word? I'll give you extra credit if you look up the definition (see I'm becoming a teacher already)."
Lena wrote in her blog: My word is "be." This is a state-of-being verb. This is to exist or live: Shakespeare's “To be or not to be” is the ultimate question. Every day I need to ask myself: "What do I want to be today?" Happy, at peace, guilt-ridden, lonely, angry, hateful, grateful, joyful, radiant, loved, lovable, loving. I have to choose every day to "BE" something. I will always BE Lena Bartholomew. But what Lena do I choose?
They are both so wise, so I was thinking about MY word. Someone left a comment saying something about it being thought provoking. So I said, yes, indeed I had been provoked. And then it occurred to me, maybe that should be MY word. So I looked it up:
pro·voke –verb (used with object), -voked, -vok·ing.
1. to anger, enrage, exasperate, or vex.
2. to stir up, arouse, or call forth (feelings, desires, or activity): The mishap provoked a hearty laugh.
3. to incite or stimulate (a person, animal, etc.) to action.
4. to give rise to, induce, or bring about: What could have provoked such an incident?
Hmmm... VEX, I enjoy that word. :) Sorry back to the task at hand.
I would say, I am provoked daily. DH does something stupid...I know- never right? The kids don't do what they are asked... you see where I'm going, no? They provoke each other, hourly. Parker walks in and changes the channel on Emma, things like that. :)
I read posts on your blogs, and I'm provoked to leave you a comment, of support, or agreement, or chuckle with you!
I go to fun Nationwide(this yr was worldwide!!) Retreats for families, and I'm provoked to throw one at home. Ok, so it is only a two hour party, not a whole weekend, but still, ya gotta start small-ish right? We have almost a 100 people coming! YAY!
When they told us Jack wasn't going to live...I'd say I was provoked. Provoked to stand up for him, and what we believed he would BE( Lena's word) and BECOME(Anna's word). I'm provoked everyday, to fight for him still! I was provoked to start a support group, for kids being treated for clefts at PCMC. We know have 112 members.
I'm also provoked every time Jack smiles at me, or gives me the "how ya doin" head nod, I melt. Or when the kids are sweet to each other, and helpful, and the boys say "Love you mom!" I am provoked to know that they really are good kids.
I am provoked to laughter when a friend sends me a silly or cute picture on my phone. I am provoked to love, when someone wants to kiss me. I am provoked to remorse, when I yell too much at my kids. I'm provoked to cry, when a beautiful singer sings a beautiful song.
This picture shows a womone crying. And I have to say, when I am provoked I cry. Whether it's tears of sadness, or frustration,or anger, or tears from laughing your guts out, or pure joy, or being so proud you could burst.
I am amazed that this word, seemingly so negative, seems to fit- at least for me.
So what is YOUR word. And like Anna said, you get extra points, for looking up the definition. :)
Friday, July 11, 2008
So here goes:
1) Post a comment on my blog about a memory you have of me (could be long ago or recent. I think the first one, would be fun!) 2) Next, repost these instructions on your blog & see how many people leave a memory about you. If you don't blog, leave a comment anyway & I'll post my memory of you here on my blog. Here's to hearing about the misty, water-colored memories. Should be fun!
Tuesday, July 8, 2008
When I got there, I was greeted by one of the nicest ladies from choir! Back when we first found out about Jack, she emailed me, and told me she was praying for me, and she loved me. I will never forget that!
Anyway... I found out tonight, she has a BLOG!! You KNOW how I love when friends have blogs!! :) I didn't get the camera till the day before we left for MB, so I didn't have it for Sunday. I was SO bummed, cuz you ALL know, how I love to document things in picture! Anita had her's and she is just like me!! I took some pictures for her, from my angle, and we had such a good time! I would tell you more, but she did it BEAUTIFULLY, so I'll just direct you to her! It was perfect, to be there with her. Just like me, she grew up watching it, with not very many LDS people around, and Music and The Spoken Word, and Donny and Marie, were our only link to Mormons outside our little worlds!
So go read all about our adventure! And... Thanks my friend!!
Monday, July 7, 2008
Sunday, July 6, 2008
I loved it in 1985, but watching it today, I can't help but wonder if the music world as it is today, would come together for something like this. Correct me if I'm wrong, but I don't see it happening. Watch it, and appreciate what it must have taken to get all those amasing talents, in one room. And it is such a range of artists... I mean seriously... Kenny Rodgers, Diana Ross, Bob Dillan, Huey Lewis, Steve Perry. Never gonna happen with Fall Out Boy, Josh Groban, Jonas Brothers, Bloodhound Gang, or Metallica. (I asked my kids for some examples) *grin*.
Saturday, July 5, 2008
Tuesday, July 1, 2008
Well, that aside, there is nothing like the view of the ocean, and especially, when it's been awhile.
The night we got there, we were SO exhausted, and didn't make it down to see the ocean. So Friday morning, I woke up bright and early, and headed out to find it myself. I honestly, had NO idea how to get there...just headed in the direction I figured it would be.
The closer I got, the more emotional I became, and when it was finally in view, I was overcome. And then to watch the sun rise, was indescribable.
I went everyday, dragging someone else each time. I hope this little video I put together will give you an ounce of what it was really like. And as a side note, the time stamp on the first day, is still set to Utah time. :) And...of course my David is serenading you as you watch! But, it really was a miracle, we all got to go to the ocean, and an even greater one, I watched the sunrise, 3 days in a row!!!
May I suggest watching on Youtube(just double click on the video), and not on the blog. If you watch it here, you can't see the time stamp. It's cool, to see the sun change, and watch the time.
It started out as a day of fun at the beach. We had it all planned out, we hooked up with our friends(who had a car), they(had our kids)- would go to the store and get water for everyone, I was picking up the box lunches provided(for 10 of us), and taking the shuttle with Jack, and Steve was going to walk(alone), so he could buy the boys Boogie Boards.
That all went well, we had a little bit of a hard time meeting back up, but found a spot, and settled in. Then we realized their baby NEEDED shade, so we found an umbrella, and moved everything. The kids went straight into the ocean, of course. I had a good eye on them, but if you've been to the beach, you know this is NOT an easy task.
Emma and Tashia, were playing on the shore, Steve had finally caught up, and Jack and I were bobbing with the waves. I looked up, and the kids (Nick, Parker, and Destiny), had been "swept" down the shore line unknowingly. So I handed Jack to Steve, took the two girls, and headed out to find them. It seemed like they were half a mile down the shore, but I finally found them, and we headed back.
I showed them where we were at, and to keep an eye out, that they weren't drifting too far again. Then we settled in a had lunch. Wade( friends husband) had gone back and forth to the car so many times I thought he was going to pass out. But we all had a lunch, well everyone there, and were setting up to eat, when Parker came running up to my, crying and itching.
"I think I got stung by a jelly fish!"
His whole chest was red, and there were red streaks all over his back. I really couldn't tell if it was Jelly stings, or him scratching. I poured water on him, to see if maybe it was just the salt water irratating his skin, but it was just getting worse.
So I grabbed my sandwich, and we headed over to the Lifeguard, who thought he was having an allergic reaction. He said,"Is he allergic to Bee's or anything?"
Oh my hell...
So he called EMS. A nice policeman came to get us, and sprayed vinegar on his back, as this helps release the toxins. Parker was so brave, but SCREAMING on the inside, it hurt so bad. The policeman, lead us up to the street, were an ambulance was waiting.
Now I don't know if I mentioned this before, but we were at the beach, in our swimsuits, with no shoes on. *rolling eyes*
So EMS checks him out, and they decide he's been stung, but just a small section on his back. So they poured MORE vinegar, on him, and he is smellin good! But the redness, is a reaction to the sting. So he says to me, " Ok, so I'd like to start an IV, give him some Benydryl, and watch his breathing." I said, Ok fine.
Then he said it. "...And take him in."
"To the HOSPITAL?" "Yes Ma'am, to the hospital Emergancy room."
Let me refer back for you... we were at the beach, in our swimsuits, with no shoes on. I had NO cell phone, no ID, no insurance card, no money, and NO idea where my husband was. Luckily before we left the lifeguard stand, I saw Nick and told him to go find Dad. So the police man let me use his cell phone, and we called MY cell phone, which was in a zipper pocket, in the beach bag, in hopes SOMEONE would answer it.
Steve finally answered it, but I had NO idea where we were going, what to do with the kids, how he would get to where we were going, or how Parker was.
We have talked about my anxiety here before. :) Luckily, I had an angel on my shoulder, keeping me calm. The policeman would take Steve back to the hotal to get his wallet, and Parker and I were headed to the ER, in an ambulance. For the record, they didn't put their lights on. :)
About 10 minutes after we decided to take Parker in, he started feeling better, and 20 minutes after he got some IV Benedryl, was sound asleep, and the reaction was over.
And yet, there I sat, in an unfamilar, FREEZING COLD, ER, in my bathing suit with no shoes on, and sand all over.
Steve and Jack finally caught up with us, and Em and Nick got to stay at the beach with their friends. Jack was so funny at the hospital. I caught him on video, check it out.
The staff was very nice, and accepting of my n*k*dness. :) When the registar came in, she said, "Well, I can tell by the looks of your outfit, you don't have your insurance card!"
At the risk of putting my n*k*dness on the internet, here are a couple of pictures of our adventure. Unfortunatly, I didn't have the camera, until Steve came, but at least I have these...
You don't have to say it... I'm TOTALLY hot... *rolling eyes*