Knock on wood...ya right

The more I say it, the more chance of higher the chance of something bad happening. It seems like lately, I've been telling LOTS of people, "He's GREAT!!!" "No surgery for a year!" "Haven't been to an ER in ages." The increase is probably due to back to school and catching up with people from the summer. But I really need to say, "He's fine." And leave it at that.

Last week, I had a cold, and this week, Parker and Jack, and now Emma came down with it. Jack, well, he gets bad...fast. Last year, he ended up in the hospital for 3 days, from a cold. So I've been watching him close, waiting for the fever spike, which he is so good at. And we all know, I'm always on shunt alert.

He took a LONG nap yesterday, over 3 hours, but he's sick. No big deal. Then last night around 9:00, he started getting fussy. Now sure all two yr olds are fussy. Not him. The fussiness turned into whimpering, and grabbing his head, rubbing his forehead, and cold sweats. I'd say, "Does your tummy hurt? Does you head hurt? Do your ears hurt?" A whimpered "YA", to all but ears, that one got a no. He went on for about an hour, crying, and whimpering, squinting his eyes, like it hurt to open them.

So I had Daddy ask him what was wrong. Maybe he could get more information. Now he's telling us, his elbow and knees hurt. Um...maybe it's time to stop asking. So after about an hour an a half of this, I decided to take him in. So now is the dilemma, drive across the street, or 20 min to the hospital that takes care of children. *sigh*

I headed to PCMC, but had the most sickening feeling, I should stay close to home. I didn't WANT to go to the "BIG hospital". I wanted a CT scan-they don't have one for kids, with the little papoose board, to snuggle them in. They don't know I'm not a hysterical mother, and I actually know what I'm talking about. They won't have "KID STUFF" readily available. These are the things that have been going through my mind for the last hour. But it was 11:00 at night. PCMC is FAR away at 11:00 at night, even further in the middle of the night, when we are done. And the BIG hospital, I can see from my driveway. I can read the sign on top of it. So I followed my gut, turned around, and drove 3 minutes to the BIG hospital.

He's still a little whimpery, but better. They ask me what's going on, and I say, "It's either a sinus infection, or his shunt is failing." *rolling eyes* They got us right back, we never even sat in the waiting room. Luckily, there was noone there. Of course he charmed the pants off everyone in triage. :) He was told at least 3 times last night, you are the BEST patient I've had ALL DAY!! heehee

Fortunatly, they realized RIGHT away, ;) I knew what I was talking about, and did everything I asked them to do. The Dr even said, "What do you want us to do?" YIPPEE!!!! The imaging guy, was BLOWN away at how good Jack was. Duh...They all were really. Oh how I love those moments. What I really love is the way people melt when Jack tells them "thank you" in sign. Seriously, the cutest thing you ever saw.

The Ct scan was of course in a HUGE machine! Nothing to snuggle my little bug, but he did GREAT! Such a trooper! Just laid there and smiled. The tech was running around trying to figure out how to get the best pictures. Cuz ya know, it was an adult machine. But we got it all figured out.

So...shunt it fine, YA! But, as the radiologist, and Dr said, "He has an impressive Sinus infection." Now I'm not sure, if they don't see many kids with clefts, or kids at all for that matter, but in any case, every sinus passage he has, is filled with crap.

One other cool thing, the guy who checked us in, came back, and said, "So now I know what a VP shunt is." Apparently he didn't know, and had googled it. Then we let him feel is on his head, and since he got his hair cut, you can see the tubing. This guy thought it was the coolest thing. The guy works in the ER of the largest hospital in Utah. Crazy.

So I'm REALLY glad we went across the street for a sinus infection. Besides, I figured, if it WAS his shunt, maybe we could have gotten a ride, to PCMC. Ambulance rides are cheaper then gas right???

Jack's Eye appointment

I know, this is the first chance I've had to sit down, and type! sheesh...

Anyway...

We went to see a pedriatric opthmologist. I debated back and forth between switching to a neuro-opthomalogist, but in the end, decided the "regular" optho, could get him in to the neuro faster than I could if need be.

Well guess what...his eyes are GREAT!! He didn't see anything, to need to see the neuro! Crazy isn't it? He said his optic nerves looked normal. "NORMAL??" Wow...

As far as the wandering/lazy eye, he agreed, but they are both a little weak, which is good! So one doesn't overcompansate! YAY!

The depth perception issue, the Dr said there was no concrete way to tell at his age, and nothing they can really do for it anyway.

Now for the kicker. The Dr says, "He has a moderate astigmatism, does it run in your family?" We both laugh. Dad, has a significant one, and I have a small one!" The funny part is... none of the other kids have it, that we know of, and Jack's is evidant, at 2 and a half. This poor kid can't catch a break! Well not really, but you know what I mean!

The Dr said he'd need glasses at a young age, but for now, his vision was fine, for what is on his plate! We have to go back in a year, unless of course his eyeballs fall out. haha...You know me...

So I think it's funny, the two things that run in the family, astigmatism, and cleft chin, Jack is the only one of our kids to get it. Well those and everything else! Oh Jack...you are just special!! :)

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!

Over due update!!

Alrighty then...

Goodness, last time we chatted, I was so worried about Monday, and now it's FRIDAY!
The IFSP went great! And Amy...you were right. His therapists overrode the tests. He was only a little behind in fine motor, and she, the OT, kept saying..."I SO don't want to discharge him!!" The main concern besides speech, is keeping an eye on him. Checking in with him so to speak. So we have gone down to once a month with Teacher lady, and OT. He still get's speech 3 times a month, so every ten days or so, and Musikgarten, his little music class, once a week. They are also refering him for the little preschool. That is twice a week, for an hour and a half. WITHOUT ME!!!!!!!!! Not quite sure how I feel about that...I will be a few months before he starts that anyway. Probably not till summer anyway. And I may wait untill after we get back from Myrtle Beach!

The play tryouts went great! I love the whole process. They really do a great job. First they tell the kids about the play, and BEING in a play. They talk about commitment, and doing your best. They tell them, if you can't make a rehearsal, don't try out. They are trying to do a play in a week. Soccer baseball, parties...all have to wait, if you want to do the play. There have been a few years we have had too many other commitments, and couldn't do it. But sadly, some people think they are the exception to the rule... Last year even, Parker got sick at the beginning of the week, and had to drop out. It's a great lesson in commitment they teach.

Then they line up the kids in a BIG circle, and have them count off. Now they know how many kids, and didn't have to count themselves. It also gives them an idea of their "stage presence", before the even ask them to do anything. Then they go thr5ough a series of "tell us your name and age. Then tell us, as if you were a pirate! Then they have certain age groups do specific things. They had the little ones, K-2nd play Simon says, seeing how well they move, AND follow directions! The older kids, 12 and up, they taught them a paragraph, and they had to repeat it, in different charactors. One time they had to say it nerdy. Most of the had a southern accent. I thought that was funny. The age in between them, Parker's age, had to say a phrase a couple different ways. Then they had them all sing row row row your boat, like 20 times. NOT my favorite part...but it gives them a good idea of who can sing and stay on the beat...ish! :)

They play is written to incorporate LOTS of kids. So they give individuale parts, to the older kids. Then 3rd thru like 5th and K-2nd are a group. They little kids usually just have cute costumes, and come on stage only maybe 3 times, sing a little song, and do a little dance, and leave. It's WAY cute! The older set, will have some lines, and are on stage more. They also pick about 4 older kids, to be Assistant Directors. Last year, Nick was in charge of the sound. He hit play, when it was time! haha...

So THIS YEAR... Nick is again, an assistant director. He helps the older group of kids (Parker's group) learn their parts. He loves being in charge. Hmmm...wonder where he get's that? And Parker, is part of a silly group of kids who run around scaring people or something. They are both really excited. THey are having a blast! I can't believe it's friday already! It's been so quiet around here... :)

So if you're around...Try to come see it! They are doing it at 3 and 7, This Saturday, tomorrow. The 12th! Contact me, and I'll tell ya where!


And sorry for my long absence, my laptop is broken. I was on it the other day, and got a HUGE wave of nausua. So I set it down, open and went to the bathroom. I was so suddenly sick, I went straigh to bed. Luckily DH was home. While I was sleeping, I heard a LOUD CRASH! Yep, laptop. Jack had pushed it off, and it landed on the florr, upside down. UGH. And I just haven't had the time of the strength to deal with the idiots, geeks who think they know everything! Ya know? And the fact I live with a computor hog, limits me abit... so I jump on when I can!


And one of the other things from Monday, I was waiting to hear if I got job, but I didn't! *rolling eyes* I'll just keep looking. I did find a "home party" company last night that looks interesting. Check it out....what do YOU think... http://www.uppercaseliving.com/ They have the neatest stuff, and it's not outragously expencive. So, I'm thinkin about that...and a few other things.


Emma, has dance pictures tomorrow. Oh the horror! Do I doll her all up? Do I attempt to do her hair? Ugh ugh ugh...is all I can say. Her teacher wants them to have ringlets. Um ya...Emma can have ringlets.


Oh, and here's a recent picture of Jack, that just cracks me up. He was laughing hysterically! Can you tell!?!?

Monday is gonna be busy

Monday, is coming fast, and it has lots of things in store.

First off, we have Jack's IFSP-(parent teacher conference for infants). I have mixed feelings about it. I have loved his therapists, all of them. I love having them in our home. I consider them friends. Jack is doing so well, I am wondering what services they will take away. What friends, we will stop playing with. It feels stupid, to NOT want him to do well, so we can continue to get services.

We did most of the "testing", which is standerized...SO ANNOYING... but he did well. His motor skills are great. His fine motor is great. He can jump, catch a ball, kick, and walk on his tippy toes. His speech is coming along. He's getting more and more signs, that he will do spontaniously. And he copies the ones we show him. Granted, it's a very modified, JACK version...but he does them. But the only "words" he has, are Mom, HUH?, uh oh!, NO! He can meow, pant like a dog, and does a "Jack version" of roar, quack, and neigh. I don't remember if I told this here, but when we tell him to say something...he mouths it. NO SOUND! Just moves his mouth. And usually nods his head. It's funny. Reminds me of when I was waitressing, and in training they taught to nod your head when you ask if the want a drink! HAHA...

So we'll see how the meeting goes, and what conclusions will be made. For 2 years, I've been excited for him to go to special ed preschool. Now I worry he won't qualify. Part of me wants him to be around "regular" kids, the other wants him to stay FAR away from them. And with special ed, he will go when he turns three, not on the school year. There's the whole bus issue too...ya..he is SO NOT going on the bus- at 3!!!!!!! Some say speech will qualify him. Some say the hydro, and cleft will qualify him. WHo knows for sure. I know, I know, it's a year away...but hey...I'm SO GOOD at freaking out, before it's neccessary! :)

Then after school, are tryouts for Missoula Children's Theater. It's a wonderful company that travels around the country, putting on shows, in a week. The tryouts, will be tomorrow from 4-6, they will pick the cast and crew, then practice all week, and perform it on Sat. It is TRUELY amazing what they pull off. The most amazing thing...it's not painful at ALL!! heehee...I know you've been to plays that were painful...

So Nick and Parker are trying for that. hmmm...Emma is 5, but I think she has to be in kindergarten. Eh...we'll see.

There's a few other things, that I don't feel like devulging quite yet. But soon. Ya know, I LOVE to be busy, thrive on it as a matter of fact. It's going into it, that freaks me out!!

Wish me luck!

Random thoughts

I wanted to tell you a few things.

~About Pres. Hinckley's passing... SO MANY neat stories. Here are a couple, you might not have heard about if you don't live in Utah. This one was about how teens did what they could to show their respect. This one was so sweet, it brought me to tears. Not hard lately, but still, it was nice. Be sure to watch the video. The funeral is on Sat. and he will lie in state, Thursday till then. I hope we can go. It's one of those once in a lifetime things ya know?

On a completely different note...

~The kids wanted to play spoons, and this time, Emma decided she would play. To guarantee she would continue to play, we/I made sure she won, the first few hands. Then I was trying to let her play by herself. Let me see if I can paint the picture.

She had 3 six's. I was watching, waiting for that last six. 'Cuz when you get 4 of a kind, you grab a spoon. So Parker also knew she was close, and he was actually the one who gave her the last six. So Parker and I, both know she has all 4. She hadn't figured it out yet. So I'm watching her, as she gingerly separates them, so she can see what she has. All the while Parker is saying..."Emma, when you get 4, get a spoon." over and over. She continues to fan them, FINALLY gets them fanned out, and we are all waiting for her to grab a spoon. Then...she starts to count them... (in a whisper-totally unaware we are all staring at her) pointing at each card... one... two... three... four... Then her face lit up, and she looked down...realizing she had to grab a spoon, before anyone else did, and SNATCHED it...cackling all the while! Then Parker and I grabbed ours, and left Nick in the dust!! She was SO proud of herself! Oh...my... goodness... I was laughing so hard, there were tears, and no noise. *sigh*

Just now, she said to me, "Are Dragons real?" I said no. "Are tigers real?" Yes. "Are giants real?" No. "Phew!" ...oh that girl...

~Jack did the sign for "hurt" today! I was SO shocked! We do SO MANY signs with him. He only has like maybe 5 signs he does spontaneously. You know, like on his own, without being prompted. He does: drink, more, fish, shoes, and pig (for every animal) He copies a ton, and recognizes even more. It's frustrating, cuz i feel like he's not doing as much as he could, and exciting when he actually does it. As far as words...um...ya. Mom, Huh?, Uh oh, ya that would be it. We are going to try increasing his speech therapy from 2 to 3 times a month. We also started MusikGarten at Early Intervention. So far(we've been 3 times)...he just sits on my lap. But I think that will help his speech too. There are other kids his age talking, AND... he LOVES music and dancing. So we'll see...

~Guess who picked the glue off...well, it wasn't me!! haha, luckily, it has healed nicely! Probably cuz it wasn't that big to begin with!! *rolling eyes at myself*

~And...we are having the most GLORIOUS snow!! Oh how I love it. Monday we were BLASTED!!! Still have like 6 inches in the backyard. They say tonight...while I'm sleeping :) ...we'll get 3-6 more! And more the end of the week! WOO HOO!!! Seriously love it!! I'll get a picture in the AM!!! Cuz I know you can't wait to see it! ;)

God's Will

I've been thinking a lot lately, about seeing the Lord's hand in things. This talk really struck me the first time I heard it. I hope you'll take time to either read it, or reread it.

At the Birth Defects Conference last week, Rachel Coleman spoke beautifully about her daughters, and how much she believed they had greatness in them. When the doctors kept telling them otherwise. This is a song she wrote for Lucy, who has spina bifida, and CP, But I think it applies to ALL of us. She said how one day, she saw a caterpillar, and thought, "I wonder if that little caterpillar knows what it is about to become?" I think so many of us, think we are only a caterpillar, and being a butterfly is way out of our reach. This song, reminds us, to believe we can be anything we want to be.



I have said this before, but I am SO thankful for my little Jack. Because of him, I have had so many amazing experiences, I never would have had. I have always know he was sent to me on purpose, and was special ordered with his 12 birth defects.

The other day, Shanna, talked about her feelings and shared this song. I hadn't heard it before, and I am SO GLAD she brought it to my attention. It is SO beautiful, and sums up exactly, what I'm meekly trying to say! Take a minute and listen to it. But get a tissue first. :) Thank you Shanna, and Martina!!

Beautiful pictures

I got an email today on one of my many support groups. Someone came across this picture on the internet, and was so touched by it, she shared it with the group.

Well, I have some of this artists work. This picture has been in my scriptures for years. The first time I saw it, I thought it was me. I love thinking it is me, being hugged and held, by Jesus. When I look at it, I can feel my head on His chest, and His arms wrapped around me. I can hear Him breathing, and I can feel how happy He is, to show His love for me.

One of the things I HAD to have at the hospital with me when Jack was born, was this picture. It meant SO much to me, and helped me to remember, no matter what happened with Jack, Jesus would be by his side every step of the way. Everyone who came in my room, and knew about Jack, was moved by it as well.

Then my Mom, gave us the picture to the left. If you look closely, you can see that she (my mom) "altered" the picture to make the baby look like he has a cleft. It hangs on my wall as a daily reminder, that Jack was made that way on purpose, and that Jesus loves him, and all of us.

I was going to put the pictures on here, but provided the links, so you can see the rest of her beautiful pictures, and read some of the stories that inspired her to draw them.

I hope you can find the same level of inspiration as so many others have.

22 Minutes

I am proud to call this women my friend. Alice is one of the most amazing woman I know. I am so excited, Ch 2 thought so too!!

~*~*~

A few years ago Alice Perreault was at the grocery store with her son Julius. The cashier looked at her son and looked at Perreault and asked, "What's wrong with him?"

She'd forgotten all about that question.

"...It all came back to me about that worry of that question," she said. "And there it was."

The question came up about her sister, Renee.

Renee was born with Down syndrome. Right after the delivery, before her mother had recovered from anesthesia, hospital staff asked her father if he wanted to sign papers and have the baby taken away. Because that's what was done at the time.

"I spent my whole life with Renee explaining to people why she looks the way she does," Perreault said.

Now her son wasn't a baby anymore. And there was the question again.

During delivery, Julius' umbilical cord was pinched. He went without oxygen for 22 minutes.

He went into a coma.

He went into a state of neurological agitation. He cried for six months.

Now he had quadriplegic cerebral palsy.

But the cashier wasn't asking what his diagnosis was.

She was asking what was wrong with him.

That, in part, was why Alice Perreault started Kindred Spirits. Perreault, an artist and educator wanted to bring art into her son's life. But she also wanted people to stop asking that question.

That's why Kindred Spirits is an art studio where kids with and without disabilities work side by side.

And then display the work out in the community.

Perreault runs the organization in addition to caring for her son and her sister.

She doesn't want pity.

She doesn't want people to say mothers like her are "blessed." (She mimes sticking her finger down her throat. "Ugghhh.")

And she wanted a cashier to know that nothing was "wrong" her son.

So when Julius was looking up at her, wondering how she was going to answer the question, she smiled back at him and then looked at the cashier and said, "Nothing. We're having a great day.'"

For more information about Kindred Spirits click here.

The Art Access Gallery is now hosting a new show of Perreault's paintings, called "Gifts."

Copyright 2008 Four Points. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

things...

Yesterday was pretty good. Even left the house, made dinner, put make up on, and put real clothes on!! I've been wearing sweats! I only took m o t r i n too. But by evening, I was done. And if the sore b u m wasn't enough, I got you know what yesterday... two weeks early. UGH. Seriously...what the heck!!?!?

As far as Jack's IFSP. He is now getting speech, occupational, and teacher, twice a month. We are still waiting on the PT consult, but I'm heading to Shriner's on Wend. We'll see what they want to do. I KNOW he needs new DAFO's, and our OT thinks he may need higher ones. Higher up his leg. I'm just worried about walking and that. Guess we'll see...we all know how I LOVE that!! *rolling eyes*

And it was fun to go over his goals from 6 months ago, and realize he has done most, of most of them. If you know what I mean. Like... we had a goal he would follow directions 60 % of the time. And while it's hard to say whether he is ABLE to, or CHOOSES not to...he is doing great! Now we are working on drinking from a straw, this will be interesting. Balancing on one foot. Imitating sounds, I think we have him down for knowing 5 animals. I have this cute picture of Emma with a baby cow. He was looking at it the other day, and kind of saying...Moo! So I was thinking, we have a little farm near by, and I would love to take him over there and take pictures of him with some of the animals, and make him a little book. And then...my butt was cut open...*rolling eyes...again* But last night, he was in the tub with Em, and hollering..."MOM!" It was so funny. A long deep MOM!!! I'll try to get it on video! He is so funny.

Nick seemed better yesterday, but today, seems worse. Maybe I'll take him in tonight. My peds office has an after hours clinic, which I LOVE, but they don't open till 5:00. So now I'm just waiting for everyone else to get sick. Make the rounds ya know? *sigh*

I really wanted to go to church today, but it's just not gonna happen. First of all, I can't possibly sit for that long. Second of all, when it comes to leading the music, I really don't want to be getting up, and sitting cautiously, ya know? It's embarrassing enough. Don't really want to stand up in front of everyone. Thirdly, by the time I got everyone ready, I would need a 3 hour nap. Again, I think it's so weird, how the WHOLE body is affected, by one area being cut open.

Well that's all for today, unless something else comes up!!

Remembering what could have been...

So I came across Jack's birth plan. Someone on one of my support groups is going through what we went through, so I sent it to her.

I've been really thinking about that time. Mostly because of the speaking in my friend's class. And now reliving it through this mom. It's been kind of sobering. To look back on it. When I was looking for the birth plan, I found an email Steve had sent to the Funeral Association. I can't believe what went on in that conversation. It talked about how funeral homes don't charge for services for infants under one. But the do charge for "product". So if we wanted to hand make a casket, we could. It talked about cremation, and how she was going to send us a pamphlet on how LDS church leaders felt about it. It talked about how Steve had looked into how much burial plots were, at the cemetery a few blocks from our house. I don't think I ever talked about that before. It's humbling to share it now.

I also wanted to share what my birth plan said. Here are some excerpts, I'm leaving out the "details", other medical things, that are irrelevant to the feelings.

We would like this day is to be a celebration, regardless of outcome. Our beloved baby has been diagnosed with Semi lobar Holoprosencephaly, among other things. We are expecting him to live, but we also know that he may not. If that is to be, see pg. 2 of this birth plan. Please, when you speak to us, be up beat. Please don't talk about Jackson not surviving.

~We would like the OR staff to be upbeat as well. Again we are expecting him to live, please join us.

Here is pg 2:

In the event it looks like he’s not going to make it:

Please call our baby by his name, Jackson. This is our child, whom we love deeply. This love compels us to revere and treasure every moment of our baby’s life to its fullest natural extent. Your compassion and understanding during this bittersweet and difficult time are appreciated deeply. We believe that the memories of our actions during this sacred time with him will later console us.

We understand that after the birth, situations may arise that were not anticipated and decisions will need to be made. We want every measure taken to sustain his life. But if he is not doing well, we will listen to the advice Neonatolgist, and NICU team. We simply ask you to keep us informed so we can participate in the decisions as to what is best for Jackson; that no intervention be taken without our approval, other than what is outlined above. We trust you will respect our wishes.

After our baby is born, we ask that he be wiped, suctioned (if indicated), wrapped in a blanket and, handed to the nurse. Please hand Jackson first to Steven, who will bring him to me, as we wish to cuddle our baby immediately. We ask that vital signs, weight, medications and labs be postponed, if possible.

If Jackson has fewer problems than expected, please see pg 1 and discuss all possible testing/treatment options with us.

Other than routine post- delivery care, we wish for private time with our baby. We will discuss any exceptions that should be made.

We would like Jackson to be blessed by Steven ASAP.

Memorial / funeral plans have been made for Jackson, through Seren-i-care.

We wish to hold Jackson as he is dying or has died and want to keep his precious little body with us as long as possible. We would like to bathe and dress him. We have an outfit and a burial garment.

We would like to keep the following items as keepsakes: lock of hair, ID bracelet, crib card, hand and foot molds, birth certificate, weight card, hat/blanket/clothes, family hand prints, and photographs- color and black and white.

Please give instructions to Jenny on comfort measures for breast engorgement. (If you don't know, your milk comes in, whether you breastfeed or not, or if your baby dies. So yucky.)

Regarding our other children, we will decide what to do at the appropriate time.

We want an autopsy.

We would like Jackson to be an organ donor.

Thank you so much for helping us to make this bittersweet time more bearable.

I just can't believe this ever occurred. I look at him now, and can't believe we had to even type the above words out. I will admit, I often forget. I think it's a defense mechanism. I really don't know how we got through it. We just did. We had faith, and support, and love, from places and people we never thought we would.

While I am grateful for the experience, I never want to go through it again, and it's hard to watch other people go through it. I just hope I can be as supportive to them , as everyone was to us.

The Teachings of Jack

I have this friend. Some of you know her. She's amazing, and bossy. She has been so excited about this conference. Her youngest is considered Deafblind. This conference was for parents of kids who are Deafblind. At one point during the day on Friday, she was unsure her husband was going to make it, and invited me to go with her. At the last minute he was able to go, but another friend of ours, husband wasn't. So Lisa called me, and said...and I quote, "OK, we're getting started, you better hurry... see you in a minute." I was still unsure about going. It had been a VERY long day for me, and I was tired. AND...my son is not deafblind, so I was worried about not fitting in, so to speak. I could not have been more wrong.

I went, mostly to get Lisa off my back, ( I told you...she's a bossy one) and had such a wonderful time, and learned SO much in the 3 hours I was there.

They showed this movie, "The Teachings of Jon". This is just the trailer, but VERY powerful.



Jack reminds me so much of Jon. The way he communicates, but most importantly, the way he loves, and the way he teaches us. Jack has had a profound affect on us, and so many people around us.

At the conference, they encouraged everyone to think about, and write down, the things they have learned from their child. I've been thinking about it ever since. He has taught us SO much, I'm hope I can put them into sentences.

1) The first thing he ever taught me was to believe in him. He wouldn't be with us today, if I hadn't.

2) That I'm stronger than I think. I NEVER would have thought I could go through an impending doom pregnancy. Or handing him off to an anesthesiologist. Six times. Or anything really. I have HAD to find my strength, but I'll tell you, I sure found it, and I'm still finding it, everytime something new happens.

3) Support groups are my life line. I really don't know what I'd do without them.They are all listed on over on the right. It's so nice to be able to tell them how I feel, and they get it! Or if I have a question, someone ALWAYS has an answer. They are happy to share in my trials, and triumphs. I have made the most wonderful friends from these groups. For them alone; I am thankful for Jack.

4) I've learned a new definition of beauty. I look back at pictures, and sometimes, I'm a little shocked. I notice how big his head was. How wide his cleft was. How flat his nose... is! I honestly never saw any of those things. He was and is perfect.

5) My kids have learned so much. And their friends. I love that Jack will be the boy their friends talk about when they get older. "I had a friend whose little brother who had a cleft lip...or hydrocephalus...or wasn't supposed to live." I love that my kids have gotten to know other kids with disabilities. The two conferences we have been able to go as a family, have truly changed our lives. If only to have the kids meet other kids like them, or Jack. Even better, kids who are more severe than Jack.

6) I've learned so much from other parents. Being in a room full of parents, going through some of the same things, is amazing. Mostly, that we are normal, and not alone!!!

7) True joy!

8) Miracles still happen.

I'm so glad Lisa "made" me go. I met some wonderful people, and I'm so thankful for the challenge to write down what having Jack in our family has taught us. There are of course more, and most of the things I write about here...but these are things that are in my heart tonight!

Saturday update

Today he seems better. The swelling is down, but still squishy. Gross...

Not much else to report. Just letting everyone know!

Thanks Sarah for the suggestions. Oh, and everyone take a minute to read the petition at the top of the page. It is to make sure insurance can't say Cleft surgeries are cosmetic, when they get older. It's really important, so check it out, and sign it. If it wasn't, I wouldn't have put it on here. And pass it along if you want.

And...check out the guestbook at the bottom of the page. It's fun! Sign it with a picture too!!

One more thing...anyone know anything about bald spots? I seem to have acquired one in my crown. I can't see it, Steve noticed it. The first thing I thought of was stress, but everything I find, says that is a common misconception. I know, I know, go to the Doctor, but what kind? I don't want to wait a week for an appointment, and have my GYN, say, Oh, you need to go here... And like I've had time, to worry about me... *sigh* Maybe it's related to my tiredness, but with my luck, it's isolated, and there is nothing they can do. So, if anyone has any thoughts, I'd appreciate it!

...till tomorrow...

Jack...today...

He is much better today! Had a normal nap, and has been happy! We even went to the store and got Emma some new tap shoes. I keep trying to buy Jack shoes, but I just can't do it! Today, was the first time I actually put them on him, and had him walk. His ankles are still bad. He really hasn't worn his DAFO's since he started walking. I tried to put them on him once, and he wouldn't walk. He seems to do better with them off, but now I'm worried it is causing more damage.

His feet are so fat, that he has to wear a 5 and he looks ridiculous in them. They look like big clown feet. I guess he'll just keep going bare foot. His right foot, is way worse then the left. When I had him walk in the shoes, and it looks worse, and I can see them getting ruined. And even Payless Shoes, are $20! So stupid. BUT...I just got a box of clothes from a Freecycler, and there are 4 pairs of shoes in there, and all his size! What a blessing. We'll see how it goes. And lots of winter clothes. What a relief. I hate change in seasons, and having to buy clothes. ugh

Also, this afternoon, Jack's incision seems swollen. Well, like there is fluid built up around the new shunt, just under the skin. I don't know. I go into panic mode, and then calm down enough to call without crying. They said to watch him, and....bring him in if it gets worse. I seriously don't know what's worse, watch him, or bring him in. And the fact that now he seems fine, doesn't make me feel better. He was fine when his shunt was completely blocked... SO annoying.

The past few months, I've been thinking he has no sense of smell, which means he can't taste. He eats just about everything. I gave him a sour skittle today, and he didn't even notice. But then he had some "hot" gum, and cried and spit it out. I hear you can't tell until they are about 3. I also, put some vicks, and freechia smelling stuff, on a cotton ball, and he just held them in his hands. I kept waving it under his nose, and he didn't care. Seems to me, the olfactory bulbs were mentioned on the original MRI. Anyone else have experience with this? I know, don't worry about one more thing. I wonder if I'm trying to distract myself. Who knows...

Well...that's the update for today. I'll keep ya posted...

ugh

So after I posted the last message, he slept. He slept from about 3:00, until Steve inadvertently woke him up, around 4:30. After being mad as all get out, he fell back to sleep about a half hour later, and slept until about 8:30. Woke up happy, ran around with the kids, and fell back to sleep by 10:00. Woke up this morning, was happy for about an hour, then got really fussy, lethargic, and threw up.

I called and got the dreaded, "bring him back", and get a CT scan. Yesterday, the CT scan showed that his ventricles were smaller, but not back to pre-blockage size. Today, his ventricles are smaller-back to the right size, but he now has fluid, on the outside of his brain. Apparently his brain is not re-expanding as fast as the fluid is leaving, so it has gone to the outside, between his brain and his skull. They tell me this is common, and to watch him.

We all know this is my favorite thing to do! We have to go back and get another CT, next Thursday. And...if he gets worse, we have to bring him back.

Oh, and they tell me to keep him laying down as much as possible, so the fluid can go to where it needs to. YA RIGHT! I should have asked for a sedative. Although, he runs and runs around and crashes. It's 1:00, and he's asleep again for the 4th time.

It is so frustrating, because he's NOT typical! He's Jack. The fact that NOW he is having symptoms, worries me even more! While I'm glad to be validated, that YES he's not right, I don't like him not being right.

So, once again, keep us in your prayers. Not that I have to ask.... :)

Home again, home again...

We're home! Jack is happy to be here. Just playing with Emma. He loves her so much! I could sleep for three days!

Waiting for Steve to come get us, Jack wondered into the room next door. It was a cute girl, with an external shunt(due to infection). She is 20. Her first shunt lasted 11 years. Since that first malfunction, she has had 25 REVISIONS!!!!!! Oh my!!! Since June, she has been home 9 days!! She had a great attitude, and it was fun to ask her questions, we've been wanting to ask Jack!! She doesn't have any delays, she plays basketball, and soccer. It was very cool to talk to her!

Jack is doing great, but now we have to watch for infection. It's always an issue.

Thanks again, for all the well wishes!! Everyone, is amazed at how well he has done. He is amazing!

Heading home!

Well, it's 11:30. We're just waiting for discharge stuff to be done. Jack had a nap this am, and seems to be feeling better. he was starting to worry me...I know, not hard...but he was refusing to eat, and take a bottle, and acting like he wanted to throw up. So I got him some motrin, and then he refused to take his bottle, but soon took it and fell asleep.

The Dr. just came in, and we are getting out of here! Jack is finishing his breakfast, sitting on his bed.

I put some more pictures in the little gallery. We played Hospital Bingo, ok I played while he slept! We won of course!! ;)

So I'm gonna go home and sleep...ya right! Check out the new pics! So cute!

Mad or blessed!?

So here I sit, alone with my thoughts. OH NO!!, you say. Well, not really...

He has done so well today, I can't even believe it! I'm still waiting for something bad to happen. Our room is small, but fine. It's certainly not where Em stayed, but it's nice, and clean. He was up running around all day! Took a little nap around 6:00, and was up and running when Gramma, and Emma came. We kept asking him, if he knew he'd had surgery.

He has never been fussy, or grumpy, or even acted like he's uncomfortable! He wasn't even a bit loopy. It is just weird. The Dr asked how he's been the last week, and was seriously shocked when we said totally fine!

Everyone...of course...is totally in love. He just stares everyone down. It is hysterical! He doesn't trust anyone! But he is very pleasant about it!

I did think about a few more things I hate about being here.

The pink admit bracelet.

Hearing the life flight helicopter, land on the roof.

The phones ringing, with their "non"ring. HATE IT!

The way his breath smells, from being intubated . HATE THAT TOO!

His name written in black on our name tags. Red for going home that day, Black for being admitted. Black...bad.

Did I mention the phones? It's like a Pavlovian response. I get all panicky. Hate it.

The fact that they tell you, you can't use the bathroom in the room. For pete's sake. He's a baby, like I'm gonna leave him to run down the hall.

On the bathroom note. I hate it when I go in there, and they come in the room and leave, thinking I'm not in the room. Murphy's law. Stupidness...

I hate the sound the IV fluids make. If you have heard it, you know what I mean!

I hate the D*** beeping, when he knocks off a lead, or his O2 thing. SHEESH!! Makes me nuts.

So...this is what I LOVE about coming here...and don't make fun of me!

The floor is clean.

They come and take out your garbage once a day, and I don't have to ask them 4 times.

They have fun toys.

My opinion matters. They ask me how I learn stuff. They ask me if I want to be involved in his care. They think I'm smart.

I am as important as Jack is. EVERYTIME someone comes in the room, with the exception of the garbage people, they ask if I need anything!

Every person that comes in the room, addresses Jack. They talk to him. They make sure it's OK with HIM if they come in, and do something. The man with the menu, talked to Jack, and showed him his name tag, and said he was from the kitchen. When Emma was in, the child life specialist, introduced herself and said I'm from the playroom, can I come in YOUR room!? Of course Emma said no, but that is irrelevant! ;)

We have the cutest male nurse tonight. We have chatted quite a bit about our mutual favorite TV shows, and he is SO cute with Jack, and me for that matter. He told the charge nurse I was his new girlfriend. So sweet...to flirt with a fat old lady in her Mommy jammies!!!

Sure I can't rewind the TV, and sure I have to look up, but it's here, and it keeps me entertained!

This whole experience has been so interesting. If he had not been sick, last May, and we had not asked for a CT scan, and requested an MRI6 months ago, I don't know what would have happened! We seriously fell over this. Tripped on it. Had it land in our laps. He had NO symptoms, yet the shunt was totally blocked, and not working. Someone commented, that they were thankful to be prepared, and not follow an ambulance. I'm certain, we would have! I am SO thankful, he is all fixed. And there was no trouble before hand. I had heard story after story, about kids in constant pain, and screaming for months, and not being themselves. I have been so blessed. I may have been mad yesterday, but today...I am counting my blessings.

He's GREAT!!

Well, it's all done! He is doing SO GREAT!! He woke up AWESOME! He hasn't cried at all.

The shunt was apparently clogged, so they just replaced it, and it immediately started to drain. And the tubes were placed too!

I can't tell you all, how much your support means to me. He is doing so good, and normal. Like he never had surgery!

Here's one from about two hours after surgery.



Here is some more! I need to run and get dinner, while Steve is still here. He is so "fine" I don't know how much I'll be able to be on here. He is ALL OVER the place. Maybe late tonight, after he goes to bed!

YAY!!! For happy boys!!!