Nikolas & MAW-We're back from Mickey Mouse's House! Pre & Post trip reports

[2specialkids]

Back from the pediatrician's office and both kids "passed" their yearly physicals. She said Boo's face looks fine and he seems like he couldn't care less. All of the scrapes were very minor and are all gone. His lip isn't swollen and the only real sign of anything is the yucky peeling skin on his top lip.
Gracie is now 5'4" and I won't say her weight 'cause she's sensitive about it. She's gained between 15-20lbs since school started. Dr. P looked at her and ran a few test (all were negative) and gave us a few suggestions to help control any more gains while she's on the meds another doc put her on. Now here's the "bad" news...she wears a size 5 now....(oh to be that thin again....hehe). Seriously tho, I'm trying to be supportive & sensitive since she's only 13 and I don't want her to develop any more body image issues.

Boo's teacher did a little math with his class today...made me feel much better about the whole thing. She explained to the kids that Nikolas fell down from his chair and hurt his mouth. Then with the older kids they figured out that if I put him in and out of the chair 4x per day for the last 4 yrs it equals out to 5,840 times and he's only gotten hurt 1 of those times. OK, now it doesn't sound as bad. Have I mentioned how much I really like this teacher? Incase I haven't, I've looked forward to him being in her class since he was born. Yep, she's that good with these guys. (It's too bad our school system is too cheap to keep her when they take over the special education classes next fall... )

 

[2specialkids]

Well, the new shot combo they gave Nikolas made him sick! He's current on all shots now so he shouldn't need any more for several years. Thank goodness. They still haven't gotten flu shots since they don't have the ones for their insurance yet but they hope to have them later this month so they can have them before we leave.

It's only 31 more days!! YEA!!

Is anyone still out there or am I all alone in our little Disney world?

 

[MagicMomentsMom]

I'm here, I'm here I'm so sorry that the shot's made Nikolas sick--which one was it?? Poor guy, get stuck and then feel yucky afterwards--not fair.

GenevaClaire has to have her 5 year old shots next spring. We had GenevaClaire scheduled for the flu shot clinic at the ped's office but it was the weekend she was so sick with the H1N1 flu--so now I've got to get her in another shot clinic or somewhere... Ugh.

Hugs to your daughter too! I know meds can totally cause havoc with your weight--I was on an antidepressant that shot my weight thru the roof --back before I had GenevaClaire. Does she like to dance? Just thinking out loud but Maybe have a nightly dance party and get everyone moving for like 15 minutes??? It's kind of like interval training but it's just all fun and it might help...

Lucky you with the awesome teacher--DD's got a good school but the lead teacher for the preschool is soooooo ditzy and air headed. Just an example: GenevaClaire got her shirt wet in the water table so she put on her extra shirt, well I got there at 2pm and her shirt was on backwardsshe says "oh I was coughing when I put it on her and I must have not seen it, at least it's on her" I'm like ummmmm, ok. She walked around all day long with her shirt on backwards and you never noticed??? Plus she doesn't practice positive discipline, the teacher from last year did, she was awesome, there was never a negative approach only a positive redirect or explanation--not this one, I've heard her mouth before I even get the door open with her NO'S and don'ts. but it's the only special needs preschool that's an inclusion class with small numbers in my area. The others are instutionalized settings with large numbers and very little interaction among peers. So I guess we're just stuck now. GenevaClaire's IEP is up in Dec and the OT keeps saying "she doesn't need us" I'm like WHAT?? are you crazy? So I'm going to have to take an advocate into the IEP meeting with me to help deal with the garbage that's to come... UGH.

AND YEAH FOR 31 more days!!! It's going to be such a fantastic trip for you guys!!!!!!!

Veronica

 

[kdzbear]

Back from the pediatrician's office and both kids "passed" their yearly physicals. She said Boo's face looks fine and he seems like he couldn't care less. All of the scrapes were very minor and are all gone. His lip isn't swollen and the only real sign of anything is the yucky peeling skin on his top lip.
Gracie is now 5'4" and I won't say her weight 'cause she's sensitive about it. She's gained between 15-20lbs since school started. Dr. P looked at her and ran a few test (all were negative) and gave us a few suggestions to help control any more gains while she's on the meds another doc put her on. Now here's the "bad" news...she wears a size 5 now....(oh to be that thin again....hehe). Seriously tho, I'm trying to be supportive & sensitive since she's only 13 and I don't want her to develop any more body image issues.

Boo's teacher did a little math with his class today...made me feel much better about the whole thing. She explained to the kids that Nikolas fell down from his chair and hurt his mouth. Then with the older kids they figured out that if I put him in and out of the chair 4x per day for the last 4 yrs it equals out to 5,840 times and he's only gotten hurt 1 of those times. OK, now it doesn't sound as bad. Have I mentioned how much I really like this teacher? Incase I haven't, I've looked forward to him being in her class since he was born. Yep, she's that good with these guys. (It's too bad our school system is too cheap to keep her when they take over the special education classes next fall... )

I have been following along. Your trip is about 2 weeks before ours. Please don't be too hard on yourself. Last fall Tyler fell out of bed at a hotel and broke his collar bone on the last night of our stay. I had one side pushed up against the wall and the other side had pillows tucked tightly into the covers. It was a queen size bed and it was high up. Accidents happen. You are still a wonderful mom!

 

[mrsksomeday]

Hi we will be in WDW Nov. 4 - 11th. Your children are beautiful. I absolutely love Boo's smile. Don't be too hard on yourself, like everyone said accidents happen.

I hope you have a wonderful, magical, pixie dust filled trip!

 

[2specialkids]

Thanks to all for the supportive responses. I'm getting over the mommy guilt thing slowly. You are all so wonderful and it's nice to be reminded that I'm not (& don't have to be) SuperMom. Mistakes and accidents will happen-they're part of life.

It's been a pretty dull week here other than the colds everyone picked up. Most of us are almost better (except me-go figure). I'm that last to get it so the last who will get better more than likely. It's not that bad tho, just stuffy/runny noses and a cough that doesn't want to go away. Gotta love the weather changes.

My little countdown clock says 29 days 16 hours to go!! Excitement is taking over!! Happy dances are almost a daily now. Mommy panic is creeping up on me since I've GOT to get DD some pants that fit (going today and next if needed Sat).

I've ordered a digi-scrapping cd from Creative Memories. I've got the camera and memory stick plus LOTS of batteries. I've made my packing lists for each of us and got all the doctor info written out ready to print. I still need to decide which of the autograph pages to print out (we have sooo many talented designers with freebies!). I'm printing out the rest of our Disney Planner this weekend. My calender set to remind me what to get from all the misc stores so I can start packing in about 2 1/2 weeks. Yes, I'm one of those OCD people who pack about a week early so I can keep looking in the suitcases to "see what I'm missing" and drive myself nuts. The only reason I'm not already packing is that I've got to buy new suitcases next week since ours are ruined from a leak in the basement this summer. Time is flying and I love it but I hope the trip lasts longer than time seems to right now or it'll be gone too fast.

Happy Saturday everyone! I'm off to get printing and shopping...

 

[MagicMomentsMom]

I didn't know you were a digi scrapper! I scrap both paper and digi--I've got a ton of links to some great digi freebies for Disney trips--they used to be here on the DIS board in Scrapbooking but something happened and they had to take them down, so let me know if you want them and I'll make a list of them from my favorites and email it to you--since I don't think that they will let me put it on the board here again. I got a killer deal on luggage at Walmart back in August--a 5 pc Samsonite set w/ a 15 yr warranty for under 70.00--check your wally world they may still have some of the sets for that low price. And don't feel bad I'm just as OCD, I've got a few boxes now of stuff that's just for the trip, I haven't put them in the suitcases yet, but they are ready to go and I even have lists of what I've got in each one, lol!
Wow I know you're excited--4 weeks till the mouse!!!!!!!!! Ok I'm off to clean house and get caught up since we shopped and played around all day yesterday! Wait till you see what I got yesterday, lol. My DD and I have a serious shopping issue (or at least according to my DH we do)

 

[2specialkids]

I didn't know you were a digi scrapper! I scrap both paper and digi--I've got a ton of links to some great digi freebies for Disney trips--they used to be here on the DIS board in Scrapbooking but something happened and they had to take them down, so let me know if you want them and I'll make a list of them from my favorites and email it to you--since I don't think that they will let me put it on the board here again. I got a killer deal on luggage at Walmart back in August--a 5 pc Samsonite set w/ a 15 yr warranty for under 70.00--check your wally world they may still have some of the sets for that low price. And don't feel bad I'm just as OCD, I've got a few boxes now of stuff that's just for the trip, I haven't put them in the suitcases yet, but they are ready to go and I even have lists of what I've got in each one, lol!
Wow I know you're excited--4 weeks till the mouse!!!!!!!!! Ok I'm off to clean house and get caught up since we shopped and played around all day yesterday! Wait till you see what I got yesterday, lol. My DD and I have a serious shopping issue (or at least according to my DH we do)

I've never digi-scrapped before but I was playing with the free StoryBook 3.0 and like it so I bought the Memory Manager this week and will be getting StoryBook Plus 3.0 when we get back. I almost skipped Mem. mgr but my pics are everywhere and I really want to be able to manage them better.

DD & I went to Target yesterday and eek: )she couldn't find ANYTHING that she liked that fit! How does that happen? Anyway, I forgot to look at luggage there & I've already looked at our Wally World so I know what they have. Tryin' to pay cash for everything really limits my shopping fun! But it's keeping the expenses low so I'm learning...& not doin' so bad if I do say so myself. It really makes me think about how much I "really" want/need something before we buy. Still we're going shopping again probably this weekend for the last few things for her and Nikolas. I still need to figure out what I need or I'm going to end up just makin' do with what I have. .

I'd LOVE to have the sites...email me at scwaggoner @ comcast.net, pretty please! I had a few bookmarked on my old pc but they were lost in a crash last fall. They were awesome too.

Time to finish the and run the dishwasher again....boy it'd be nice if they would load and run themselves.

 

[2 princess 3 princes]

I have been following your trip report. I have to tell you that I can relate to you and your son so much. I have triplet sons who were born at 28 wks. They all had the "usual" issues for being born so prematurely, all were intubated and had to have transfusions and so many other things, its so hard to deal with, but I truly believe that your body just somehow switches to "autopilot". My oldest (by a whole 3 minutes!) had a brain bleed at birth which has left him with hydrocephalus and CP also. They gave me the option at three days old to remove him from the ventelator. They knew that the bleed affected the "mobility part" of the brain, but couldn't tell me if it affected his "intellectual funtions" as well.

Before they could even put the shunt in, he got an infection from the ventelator tube, so they could only do the top part of it in the brain, they couldn't run the tubing. They had to manually drain the fluid everyday. Not a pleasant thing to see being done to your newborn.

We have been extremely blessed. I remember that at the time the dr's told us that the premature brain is a miraculous thing, and sometimes can make up for what it doesn't realize isn't there. Shane (and his brothers too!) just turned 14 in September. If I don't tell people his story they wouldn't guess that he had been through so much. I don't understand. The doctors don't understand, the boy they see when he is followed up doesn't match the CT's MRI's and ultrasounds.


I wholeheartedly wish you all a fantastic trip. Our family is going in November, but will miss you by three days. Your son and daughter both look like beautiful and happy children, and this is 100% due to the love and support of you. I would have enjoyed the opportunity to meet you all. Please let me know if there is anything I can do to spread a little more pixie dust for you all!

 

[2specialkids]

I have been following your trip report. I have to tell you that I can relate to you and your son so much. I have triplet sons who were born at 28 wks. They all had the "usual" issues for being born so prematurely, all were intubated and had to have transfusions and so many other things, its so hard to deal with, but I truly believe that your body just somehow switches to "autopilot". My oldest (by a whole 3 minutes!) had a brain bleed at birth which has left him with hydrocephalus and CP also. They gave me the option at three days old to remove him from the ventelator. They knew that the bleed affected the "mobility part" of the brain, but couldn't tell me if it affected his "intellectual funtions" as well.

Before they could even put the shunt in, he got an infection from the ventelator tube, so they could only do the top part of it in the brain, they couldn't run the tubing. They had to manually drain the fluid everyday. Not a pleasant thing to see being done to your newborn.

We have been extremely blessed. I remember that at the time the dr's told us that the premature brain is a miraculous thing, and sometimes can make up for what it doesn't realize isn't there. Shane (and his brothers too!) just turned 14 in September. If I don't tell people his story they wouldn't guess that he had been through so much. I don't understand. The doctors don't understand, the boy they see when he is followed up doesn't match the CT's MRI's and ultrasounds.


I wholeheartedly wish you all a fantastic trip. Our family is going in November, but will miss you by three days. Your son and daughter both look like beautiful and happy children, and this is 100% due to the love and support of you. I would have enjoyed the opportunity to meet you all. Please let me know if there is anything I can do to spread a little more pixie dust for you all!

Darn! I would love to have been able to meet you guys. I'm sure you all are gonna have a blast. With all the families going I'll bet there'll be atleast 1 other family there while you are.
That rollercoaster we're on can be quite challenging. We knew Nikolas would have problems from the start since he was missing parts of his brain on the ultrasound then add prematurity, vents, transfusions, subgaleal shunts-yep he had 1 also....you HAVE to function on autopilot. Thankfully he's doing so much better than anyone expected. He continues to amaze his doctors every visit. Aren't the boys just awesome!

 

[2specialkids]

19 more days!!!!
Time to start packing and getting things situated. It looks like we *might* have Nikolas' new special needs stroller so we won't need to take his wheelchair or rent a lift van....I'm hoping and the company that's getting it has all the paperwork waiting for the fax from his waiver service which was sent over on Monday. Keep your fingers crossed!

 

[pipersmom]

19 more days!!!!
Time to start packing and getting things situated. It looks like we *might* have Nikolas' new special needs stroller so we won't need to take his wheelchair or rent a lift van....I'm hoping and the company that's getting it has all the paperwork waiting for the fax from his waiver service which was sent over on Monday. Keep your fingers crossed!

I'm crossing all the crossables that everything will work out for you with the stroller, but I bet it will I've actually been following your ptr, and thought I had posted..but I'm addicted to these things, so I apologize for not posting sooner. Your two are so cute..and your trip is getting so close! Don't forget to pack something you can use to cover Nikolas' stroller and equipment in case it rains...

 

[kdzbear]

Your trip is so close! I hope the stroller makes it in time. It should help a lot on your trip!

 

[MagicMomentsMom]

Yay! I'm sending you lots of pixie dust!

I can't believe how soon your trip is!

 

[2specialkids]

Guess what!?!?!?!?!
Nikolas started saying, "I wuv ou" again!
OK, it's kinda hard to understand still but....he hasn't spoken per say for a looooong time and he's trying again.
Just had to share!

 

[kdzbear]

Guess what!?!?!?!?!
Nikolas started saying, "I wuv ou" again!
OK, it's kinda hard to understand still but....he hasn't spoken per say for a looooong time and he's trying again.
Just had to share!

You must be flying so high from this. My 20 month old said this today, but I am still waiting to hear it from Tyler and he is almost 4 1/2! I am sure you just want to scream your happiness to the world! Congratulations!

 

[maroo]

Guess what!?!?!?!?!
Nikolas started saying, "I wuv ou" again!
OK, it's kinda hard to understand still but....he hasn't spoken per say for a looooong time and he's trying again.
Just had to share!

Oh.

I am so crying.

That is the SWEETEST thing EVER!!!!!!!

 

[mrsksomeday]

Guess what!?!?!?!?!
Nikolas started saying, "I wuv ou" again!
OK, it's kinda hard to understand still but....he hasn't spoken per say for a looooong time and he's trying again.
Just had to share!

Awww that is wonderful!!!

 

[MagicMomentsMom]

Guess what!?!?!?!?!
Nikolas started saying, "I wuv ou" again!
OK, it's kinda hard to understand still but....he hasn't spoken per say for a looooong time and he's trying again.
Just had to share!

That's wonderful! I know you have to be over the moon to hear him say anything but to hear him say that is just icing on the cake! I'm all choked up over here!

Veronica

 

[pipersmom]

That is just completely awesome!