Yesterday was Chase's Baptism. We kept it small (immediate fam, grandparents & great-grandparents) due to the hugeness of his extended family.
He was Baptised at St Peters Church in Madison & was so well behaved thru mass & the ceremony. He only pitched a fit when we tried to do pictures :-)
Thanks to all that came & for everyone who helped with the set-up and clean up. My reps are now benefitting from all the leftovers!
If you have a Snapfish account- here is a link from Godmother (!) Amber's photos:
http://www1.snapfish.com/thumbnailshare/AlbumID=282870829/a=10528282_25055275/t_=10528282
If you don't- I will post the pics as soon as I get some emailed to me.
PS- This is the first week when we have NOT ONE doctor appointment scheduled. What will we do with ourselves and all this free time?
Monday, February 23, 2009
Tuesday, February 17, 2009
Monday, February 16, 2009
Big Weekend!
Mom and I had a very good visit with the doctor today- but I will get into that in a minute.
This weekend was a little out of the norm for me. Friday night I got to spend the night with Grandma & Grandpa Klett. We had a good time, especially when the whole family got up around 3am to hang out! Even Uncle Chris stopped by in between plowing to hang out. I like being up so much I did it again the next night, and the next night ;-) Good times!
Saturday Mom was a little under the weather so I was nice. We napped a lot and I was really quiet. I could tell that she appreciated it! It was also my first Valentine's Day & I had TWO Valentines. Mom & her friend Delsia. Well, Del came over after I had gone to bed, but I'm counting her too- even if she was a bitter betty about it being V-Day. I've got some sweet pics of my first V-Day, Mom will post those later.
So Sunday rolls around & I'm sorry, but two nights out of my crib (literally, not figuratively) and I was PO'd! I let everyone know too! Barely napped, cried A LOT & fought bedtime like you wouldn't believe. It was all in good fun though, I'm started to lay off now that we are getting back into our routine. Who knew I was such a stickler?
Today! Mom and I had the best doctor appointment yet (in her opinion, they're all starting to look/sound the same to me "he's cute, looks great, see ya in 6 months") We met with Dr. Greg Rice a Geneticist who works with the UW. We met him in the hospital when I was born (don't remember that) and he is my doc for the 22q. Anyhoo- he said that I look "great' (duh!) and that my muscle tone is good (check out the guns!) and that I'm meeting all the milestones I should be (you should check me out during tummy time now!) This is all good news, but I saw Mom wipe a tear when he told her that most cases of 22q have either the severe physical issues (like my heart) OR the developmental delays. Usually not both! AND he said (didn't want to be quoted) that kids who have good muscle tone (aforementioned guns) usually are not developmentaly delayed. THIS WAS EXCELLENT NEWS! Mom's been worried ever since I was in the womb that we would be dealing with all 300 manifestations of 22q. But it looks like she can chill out a bit. Nothing's set in stone of course, but Dr Rice was pretty encouraged. We're going to follow up with him in 6 months, and maybe go check out a clinic he recommended, but he thinks I'm doing great!
As my reward, Mom took me shopping- GROCERY SHOPPING- see how much I love it?
Well I'm off to sleep (maybe thru the night.) Hopefully we can get those other pictures uploaded tomorrow.
Peace
Chase
Wednesday, February 11, 2009
Recovering nicely
Thank you for all the messages on my Facebook page, emails & texts. Chase's surgery went great & he did so good that we were able to go home yesterday afternoon- No overnight! I was a big fan of that. He's recovering nicely with the help of some meds & is already acting like himself. We had a lovely chat this morning and he said to say thank you as well.
He's now in casts for 4 weeks, then no more :-) The other surgery went well too & he's back to being a danger at diaper time. Seriously, does he plan the attacks?
He's now in casts for 4 weeks, then no more :-) The other surgery went well too & he's back to being a danger at diaper time. Seriously, does he plan the attacks?
Monday, February 9, 2009
Chase Update
Man, I had the best weekend ever! You can tell from the picture that I was a little exhausted when it was all done, but totally worth it!Friday was my first over night visit with Dad. It was pretty sweet, I was so excited! We hung out, chilled with some friends & to be nice I slept thru the whole night. He's lucky, I think Mom was hoping I'd do my "every two hours" trick- but I decided to be kind.
Saturday I got to bask in the attention at Grandma & Grandpa Klett's. Pretty sweet. I also learned that I love watching Muskie shows. Mom's not exactly thrilled, but it's all about broadening my world right? She better get used to it, I have a feeling fishing is going to be a favorite for me.
Then, Saturday night I went over to my cousin Kendall's. We had a pajama party while Mom and Dad went to the Jessica Simpson/Rascal Flatts concert. (Mom wants to interject here and say that Jessica Simpson is not fat, Dad thought she looked "ok" too ;-) Hopefully Kendall and I will get to hang out again soon, sucks when I get dropped off right before my bedtime. Better planning next time please!
Sunday was mini-golf!!! Mom and I played paparatzi while Charrley & Dustin, Grandma & Grandpa, Aunt Tara & Uncle Kevin played. Dusty's Golden Birthday is tomorrow! HAPPY BIRTHDAY!! He got the coolest gold coin for his bday- maybe I'll get one soon too.
So as you can see, it was a really long weekend so you've got to give a kid a break when he crashes wherever he wants. Speaking of, it's time to sleep- got surgery early tomorrow. Just a couple minor, ahem procedures. Nothing to worry about- I get to sleep all day. I know Mom's jealous!
Peace out,
Chase
Thursday, February 5, 2009
We're good to go
Today we had an appointment with Dr. Richards (the urologist.) When Chase was born we put off a certain, ahem, "elective surgery" so that minor infection did not get in the way of his heart surgery. The original plan was do "revisit this issue" when Chase was 6 months old, they don't like to put babies under anesthesia unless they have to. And since he would be older, that would be required (who's going to argue with that?) Well since he's going under because of the tenotomy anyways next week we were hoping to knock it all out (lol) at one time.
Dr Richards checked Chase out today & he said we're good to go. It's a relief to me because it means one less time going under & a relief to Chase's dad bc, well, who wants to even think of their son remembering that experience? Lol ;-) Ok- I probably shouldn't laugh.
Chase has been a bit cranky this past week. We couldn't decide if it was his latest casting or something else. I've come to the conclusion that he's gulping his food down too fast- due to the growth spurt & therefor has a plain old stomach ache. But I tell you, when he's screaming his head off it feels like he's cut his arm off! Poor kid.
Tomorrow is his first overnighter with his dad! Wish everyone luck :-)
Dr Richards checked Chase out today & he said we're good to go. It's a relief to me because it means one less time going under & a relief to Chase's dad bc, well, who wants to even think of their son remembering that experience? Lol ;-) Ok- I probably shouldn't laugh.
Chase has been a bit cranky this past week. We couldn't decide if it was his latest casting or something else. I've come to the conclusion that he's gulping his food down too fast- due to the growth spurt & therefor has a plain old stomach ache. But I tell you, when he's screaming his head off it feels like he's cut his arm off! Poor kid.
Tomorrow is his first overnighter with his dad! Wish everyone luck :-)
Wednesday, February 4, 2009
Some good news!
Today we had a casting appointment (change out the cast, not an audition- although Chase is cute enough to be on tv) at American Family Children's Hospital. It's his last cast before surgery next week & we met with Dr Nemeth, Dr Noonan was out today.
Anyways- the casting went fine, Chase ate and then promptly peed on everyone. I warned the doctor, but he said it's an occupational hazard. Probably wouldn't happen if they hadn't let him go all free willy- the other clinic covers him up. But hey, who am I to tell the man how to do his job ;-)
That was routine, but the big news came from our nuerology appointment on Monday. As some of my Facebook friends know I've gotten quite accustomed to waiting in doctor's offices. It usually doesn't bother me, hanging out with Chase is my favorite pastime, but Monday the fine folks at AFCH tested my limits. After waiting 30 mins for Dr Ishkandar to spend 5 mins with him, to be told we need new x-rays, waiting 45 mins for approval from Dean, then waiting on radiology- well- it was a really long apt (2.5 hrs) that ended with me just leaving & telling them to contact Chase's pediatrician. Which was never done.
Anyhoo- so since we were there today I had them page the good Dr. Ishkandar to get the results. More mix-up'd info later- I just got a call & ALL IS GOOD!!! We were told in the NICU after Chase was born that he had a "weak neck." This was thought to be an abnormality in the c1-c2 vertebrae. It was also something that carried over to Milwaukee Children's and was a pain in my butt because due to insurance reasons Milwaukee couldn't run any tests. So we finally got the confirmation today that Chase's neck is "perfectly normal" and we will need no follow-up.
Happy to cross another thing off the list!
And on a side notes, I realized in the last post that I did not update on his heart!
We are still seeing the AMAZING Dr. Larry Weinhaus, who has been incredible :-) Chase has had two echos since he's been home. He does have some "insufficiency" which is where the oxygenated blood mixes with the non-oxygenated blood, but it has not gotten any worse. There are several levels of severity I'm told (mild, mild-moderate, moderate, moderate-severe, and severe) Chase's is Moderate/moderate-severe. This is ultimately what could move up his next heart surgery. Dr Weinhaus is very happy with Chase's progress, and I've learned not to worry until the doctors worry. It goes much better that way :-)
So now you're fully updated!
Anyways- the casting went fine, Chase ate and then promptly peed on everyone. I warned the doctor, but he said it's an occupational hazard. Probably wouldn't happen if they hadn't let him go all free willy- the other clinic covers him up. But hey, who am I to tell the man how to do his job ;-)
That was routine, but the big news came from our nuerology appointment on Monday. As some of my Facebook friends know I've gotten quite accustomed to waiting in doctor's offices. It usually doesn't bother me, hanging out with Chase is my favorite pastime, but Monday the fine folks at AFCH tested my limits. After waiting 30 mins for Dr Ishkandar to spend 5 mins with him, to be told we need new x-rays, waiting 45 mins for approval from Dean, then waiting on radiology- well- it was a really long apt (2.5 hrs) that ended with me just leaving & telling them to contact Chase's pediatrician. Which was never done.
Anyhoo- so since we were there today I had them page the good Dr. Ishkandar to get the results. More mix-up'd info later- I just got a call & ALL IS GOOD!!! We were told in the NICU after Chase was born that he had a "weak neck." This was thought to be an abnormality in the c1-c2 vertebrae. It was also something that carried over to Milwaukee Children's and was a pain in my butt because due to insurance reasons Milwaukee couldn't run any tests. So we finally got the confirmation today that Chase's neck is "perfectly normal" and we will need no follow-up.
Happy to cross another thing off the list!
And on a side notes, I realized in the last post that I did not update on his heart!
We are still seeing the AMAZING Dr. Larry Weinhaus, who has been incredible :-) Chase has had two echos since he's been home. He does have some "insufficiency" which is where the oxygenated blood mixes with the non-oxygenated blood, but it has not gotten any worse. There are several levels of severity I'm told (mild, mild-moderate, moderate, moderate-severe, and severe) Chase's is Moderate/moderate-severe. This is ultimately what could move up his next heart surgery. Dr Weinhaus is very happy with Chase's progress, and I've learned not to worry until the doctors worry. It goes much better that way :-)
So now you're fully updated!
Monday, February 2, 2009
Chase Update
Since it's been awhile since I've done this my writing skills might be a little rusty.
I've been home for about 6 weeks now. I know this bc today Mom had to go back to work & yesterday I was being congratulated on blessing the Earth for 12 weeks. Pretty sweet.
All's good on the home front, Mom and I have been bouncing around from doctor to doctor. Here's a little breakdown of the medical version of my life:
Club feet- this is being handled by the pretty cool Dr. Ken Noonan. Apparently he's quite the man when it comes to Orthopedics. We hang out once a week and I get new casts put on. They are the full length supa casts made of plaster. The first time I had them put on it sucked, so I peed all over them (3 times) But now I'm used to them and Mom jokes that I'll be the only 6 month old with 6 pack abs from doing leg lifts. The plan is 5-6 weeks of casts (almost done) surgery on the 10th (next week) for a tenotomy- which is where they cut my tendon? I dunno, sounds bad but it's not. Then another MONTH in casts. After that I've gotta wear "special shoes" (call me Forest and I'll kick your butt) 24/7 until I can walk & then only at night/naps till I'm in school. It doesn't sound that great, but hey my feet are already looking better & if Troy Aikman can do it so can I.
22q11deletion- We've met with Dr Seroogy (Immunology) Dr Shaw (ENT for cleft pallet) and someone else I can't remember & all has come back positive! Well the news was positive, the tests were all fine. They're going to keep an eye on me & check on me once in awhile to make sure we're still all good. But right now I'm golden!
And the brand new diagnosis! Yep, 5 minutes before we checked out of the hospital the GI doc came in and busted out that I have something called "Alpha 1 Anti-trypsin deficiency" Apparently it's a genetic (not 22q related) issue where I don't make enough of this stuff, which can cause serious liver and lung damage. So if you think Mom was anal about the no smoking around me before, dude- she's got me on lock down now! It was a little scary at first bc worst case can be liver transplant and lung disease, but my GI doc DR Yaffe said my numbers aren't too bad and we'll just keep an eye on it. My pediatrician (the coolest Dr Christine Pagel) also told Mom that if I don't have any issues by 2 months that I might be one of those asymptomatic kids. That'd be pretty cool.
So that's where I'm at medically.
Now real life stuff? I'm pretty much the cutest kid ever. With a healthy ego too ;-) I'm smiling, chatting it up & hanging with my boys. Had our first play date on Saturday. Will was running all over the place! Even got his hands on a blow torch! But that's a story for when Mom's not looking.
Well, it's getting late & Mom is probably going to leave work early to pick me up.
It was fun catching up!
Chase
I've been home for about 6 weeks now. I know this bc today Mom had to go back to work & yesterday I was being congratulated on blessing the Earth for 12 weeks. Pretty sweet.
All's good on the home front, Mom and I have been bouncing around from doctor to doctor. Here's a little breakdown of the medical version of my life:
Club feet- this is being handled by the pretty cool Dr. Ken Noonan. Apparently he's quite the man when it comes to Orthopedics. We hang out once a week and I get new casts put on. They are the full length supa casts made of plaster. The first time I had them put on it sucked, so I peed all over them (3 times) But now I'm used to them and Mom jokes that I'll be the only 6 month old with 6 pack abs from doing leg lifts. The plan is 5-6 weeks of casts (almost done) surgery on the 10th (next week) for a tenotomy- which is where they cut my tendon? I dunno, sounds bad but it's not. Then another MONTH in casts. After that I've gotta wear "special shoes" (call me Forest and I'll kick your butt) 24/7 until I can walk & then only at night/naps till I'm in school. It doesn't sound that great, but hey my feet are already looking better & if Troy Aikman can do it so can I.
22q11deletion- We've met with Dr Seroogy (Immunology) Dr Shaw (ENT for cleft pallet) and someone else I can't remember & all has come back positive! Well the news was positive, the tests were all fine. They're going to keep an eye on me & check on me once in awhile to make sure we're still all good. But right now I'm golden!
And the brand new diagnosis! Yep, 5 minutes before we checked out of the hospital the GI doc came in and busted out that I have something called "Alpha 1 Anti-trypsin deficiency" Apparently it's a genetic (not 22q related) issue where I don't make enough of this stuff, which can cause serious liver and lung damage. So if you think Mom was anal about the no smoking around me before, dude- she's got me on lock down now! It was a little scary at first bc worst case can be liver transplant and lung disease, but my GI doc DR Yaffe said my numbers aren't too bad and we'll just keep an eye on it. My pediatrician (the coolest Dr Christine Pagel) also told Mom that if I don't have any issues by 2 months that I might be one of those asymptomatic kids. That'd be pretty cool.
So that's where I'm at medically.
Now real life stuff? I'm pretty much the cutest kid ever. With a healthy ego too ;-) I'm smiling, chatting it up & hanging with my boys. Had our first play date on Saturday. Will was running all over the place! Even got his hands on a blow torch! But that's a story for when Mom's not looking.
Well, it's getting late & Mom is probably going to leave work early to pick me up.
It was fun catching up!
Chase
About time!
After much begging and pleading I've decided to start a blog. Not sure what to expect from this experience, but I decided to do so for three reasons:
#1 My friend Tarisa asked me to :-) Well, actually a lot of people said that they missed the website we started for Chase while he was in the hospital. Apparently he had quite the following of fans who missed the updates when we went home.
#2 My family is large and in charge and it is very hard to keep everyone informed on what is going on. This is the simplest way for everyone to know the same info at the same time.
and
#3 To post all the good news I can! When I first started getting diagnoses when I was pregnant with Chase, I ran to the Internet to find out all I could. And promptly spent the next few months in tears! I find that people tend to post the bad stuff & those who are blessed with little complications either don't post because they don't want to be braggy or are just too busy enjoying their kiddos. But if even one pregnant woman or new mom who has gotten a scary diagnosis finds this page and finds some comfort that not every case is worst case- then I'll be happy. I wish it had been there for me, maybe I didn't look hard enough, maybe we have many more mountains to climb, but I hope someone finds comfort in our story.
Please take this blog for what it is. A story with opinions/feelings/situtations/mistakes/triumphs that are mine and my sons'. And if you can't say anything nice, then please don't comment :-)
#1 My friend Tarisa asked me to :-) Well, actually a lot of people said that they missed the website we started for Chase while he was in the hospital. Apparently he had quite the following of fans who missed the updates when we went home.
#2 My family is large and in charge and it is very hard to keep everyone informed on what is going on. This is the simplest way for everyone to know the same info at the same time.
and
#3 To post all the good news I can! When I first started getting diagnoses when I was pregnant with Chase, I ran to the Internet to find out all I could. And promptly spent the next few months in tears! I find that people tend to post the bad stuff & those who are blessed with little complications either don't post because they don't want to be braggy or are just too busy enjoying their kiddos. But if even one pregnant woman or new mom who has gotten a scary diagnosis finds this page and finds some comfort that not every case is worst case- then I'll be happy. I wish it had been there for me, maybe I didn't look hard enough, maybe we have many more mountains to climb, but I hope someone finds comfort in our story.
Please take this blog for what it is. A story with opinions/feelings/situtations/mistakes/triumphs that are mine and my sons'. And if you can't say anything nice, then please don't comment :-)
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