Isaac's Big Adventure

PWS Clinic Appt

2011-12-19T21:10:00.000-08:00

Isaac's weight has stayed about the same since spring - so that is wonderful. It is very hard work - and I stress over his diet constantly, so its good to hear from the doctors that even they think things are going well. He has grown 3/4 of an inch since June. I was really happy and pleased with the appointment. We met with a psychologist during the appointment to talk about certain behaviors and how to address them.

Overall it was a great trip - we stayed an extra night and went to see the Christmas lights at the zoo, which the kids loved. We are really looking forward to Christmas this week! Isaac wants a pirate ship and Lucy wants anything princess. Seeing Christmas through the eyes of a kid is absolutely the best! I love how excited they get at the littlest things - we all need to live like that. Just be more excited about the little things.

Speech is really coming right along! Scoliosis Update

2011-11-19T12:02:00.000-08:00

I wanted to share this moment from a few weeks ago because it was so cute:
Isaac got a Batman sticker at therapy and on the drive home Lucy kept saying she that she was Batman. Isaac listens to her for most of the ride and then says, "No Ki Ki (what he calls his sissy), I Batman" It was so stinking cute.

He now has so many words and is really coming along with intelligible few word sentences. He still gets insanely excited everytime you can understand just what he is saying. I think that between preschool, increased therapy, and Lucy's nonstop talking - he's coming along in leaps and bounds!

We had an orthopedics appointment early this month and his curve had progressed 2 degrees in a couple of months - which isn't so bad - but we can expect our next lengthening in Spring of 2012. The goal is to stay closer to 6 months than a year between lengthenings - apparently better for the spine. Not so great when you think that a spine only tolerates a finite number of lengthenings (we've heard around 6) before it doesn't help anymore. Eek. So yeah we have the potential to outgrow the usefulness of the VEPTR earlier than expected but we knew this thing was a work in progress when we got it. Its just hard in dealing with the unknown - but I guess that speaks to more than just the VEPTR :)

Jack and Lucy are doing great. Its a wild bunch but everyone seems to have adjusted to the new one pretty well so far. Isaac does try to carry him anytime we look away but we watch for that. :)

Bring on the holidays!

Baby Jack is here!

2011-10-12T07:09:00.000-07:00

Jack Fisher Cantrell was born October 4th, weighing 7lbs 15 oz and 20 1/4 inches long. Isaac and Lucy like him a lot, maybe a little too much at times. Things are wild but going well.

Some cute pictures :)

2011-09-29T19:19:00.000-07:00

I can't resist the cheesy dress up pictures when at the beach. :)

Not sure when I'll get to post again

2011-09-23T06:35:00.000-07:00

Isaac's 3 year pedi visit was yesterday - we are a couple months off since last years VEPTR surgery - but I'm so happy to report that his weight has stayed the same for months! He's still 38 lbs. and 38 inches tall (which i think he's a little taller but he's hard to measure these days).

He's started new private speech and OT which seems to be going well. We still haven't made it in for our PT evaluation - the place we are going is super busy and I don't think he's really a high priority PT case. He also is getting speech twice a week at preschool, which is exciting. He is really getting chatty around our house and starting to get his point across.

We don't have long before baby number 3 is going to show up and lord only knows when I'll be able to post after that - but hopefully things keep going well & we get into a routine with all the new recent changes.

Loving preschool!

2011-09-01T13:23:00.000-07:00

So I think the boy loves preschool. He is so excited every morning waking me up and saying "school" over and over until we are out the door. He even is excited to get on the bus. I admit its weird sending a kid who you can't really talk to, off to spend a few hours with people you don't really know - but so far everyone has been great. I am really happy the whole thing has went so smoothly.

Oh yeah and did I mention that my little boy is doing absolutely great right now with potty training. I love this kid. We have been in pull ups for awhile - kind of trying it out - but with the start of preschool and everything we went pretty gung ho and its been wonderful!!!!! I've just been taking him often and he's holding it well and going - but yesterday - the boy walked over to me grabbed his diaper and said potty. I almost cried, but hey I'm pregnant and I do that for a lot of things these days. :) It really has been a great week!

Our quick beach trip before the little guy starts preschool . . .

2011-08-17T20:00:00.000-07:00

Where has our summer gone?

2011-07-28T11:02:00.001-07:00

We've been soooo busy!

Isaac went to his first movie Cars 2 with his cousins Emma and Georgia.

And he turned 3 which was a great day - even though it was only 5 days post-surgery. He and Lucy had a blast on his new play yard.

We can't wait to go back this week and get the bandages off and hopefully be approved for swimming again - its been so hot and awful that he can't go swimming!!!! Oh and the boy starts preschool on the 25th of August. Its insane how fast July flew by.

We had two speech evaluations and should start private speech therapy soon. He wasn't diagnosed with apraxia, just found to have some apraxic like features - but he's really been coming along in speech the last few months and I can't wait to see what the increase in therapy will do for him. He is now calling himself Isaac (I- dick) and calling Lucy "Ki Ki" for sissy. Its cute and he's getting his point across.

Post surgery hsi walking is fine and he's getting around as well as before. That has been a blessing we weren't quite expecting.

Its been a fun and busy month. Just thought I'd post a few new pictures. I need to catch up on all the other cute little PW kiddos blogs out there!

Surgery went great!

2011-07-11T17:00:00.000-07:00

So everything went well today - it took a lot longer than expected - nearly 2 hours waiting on the surgeon but Isaac wasn't wanting to wake up as usual so they could make sure his spine was a-ok. But he said all went well and he is already moving around just great and sitting on the edge of the bed for me. Lucy came along to entertain and she did - he has 2 new incisions - but already has his oxygen off and everything. I was so worried and we are truly blessed it has all gone so smoothly so far! We are hoping to be out tomorrow morning!!!

He's almost 3!

2011-07-05T11:47:00.000-07:00

Here are a few updates - its been a madhouse - a fun busy time and the kids seem to be growing like the weeds in our flowers outside. Lucy is already the dramatic wild red head (God help us) and Isaac is really turning into a little boy - not a toddler at all anymore.

Next Monday, the 11th, Isaac is going to undergo a lengthening of his VEPTR device - its his first one since it was put in last August. We are a little nervous - but kind of excited to get him back to straight again and see how well he does. His recovery is supposed to be a lot easier than the initial one and he's supposed to be back to swimming in 3 weeks or less. :)

That following Friday we have Isaac's first IEP for preschool - we are so excited he got in! I think he's going to love it.

We also got approved for WAIVER, which we tried for for 2 years, then were waitlisted a year for - so we are very very excited and blessed to start that - we are supposed to get a few things lined up and then meet with our service coordinator soon.

Plus next Saturday we are going to celebrate Isaac's 3rd Birthday!!! We are going to have a Barney themed bash - which is a little harder than you expect. I ordered all of the stuff for it off of the internet and I'm pretty sure it came from 1992. :) I guess he's not as big as he was back in the day. He sure is big to Isaac these days since he woke me up at 4 this morning to ask if he could watch Barney.

More pictures - We've been busy!

2011-06-14T09:15:00.001-07:00

Isaac played on the BIG jungle gym

He climbed this huge step ladder mostly by himself to get to the slide.

Swimming with Grandpa.

This boy likes his floogles - this girl not so much.

The big ATV race - yeah he's on the barbie one - it goes a little slower so we can keep track of him better :)

Lucy rode the pony at the Zoo - If only Isaac would we could try out Hippotherapy!

The Zoo and a few more fun summer pictures

2011-06-14T09:08:00.000-07:00

The favorite is still the elephants - even just the bronze ones :)

Isaac touched an alligator

Barney Live

2011-06-14T08:59:00.000-07:00

We went to see Barney Live in Huntington - and it was quite the hit with Isaac & Lucy. They were so excited. But you can't really tell from any of the pictures we got.

We couldn't get a single good picture of their sheer joy because they wouldn't take their eyes off of Barney to even bother to look at us.

This is more of the look we were going for. :)

A summer haircut

2011-05-26T14:36:00.000-07:00

Pre-Haircut

After
He's not quite sure what to think.

I loved his curls but this should be a lot easier with all of the swimming in our future!

We went to the orthopedist on Tuesday in Columbus. I guess we are going to go with a surgeon there for our VEPTR adjustments. Our initial surgeon there trained under the man who created the VEPTR so it makes us feel more secure in going with his recommendations. The closest recommendation he could give us other than Columbus was Philadelphia (which isn't so close to us) so regardless of what we decide on the PWS Clinic issue we are staying with Columbus for the VEPTR.

We have a PWS Clinic appointment in early June. An endocrinologist who used to work at the Columbus PWS Clinic is coming to Charleston possibly to stay - and if so we thought about going with her. We never know. :)

Just a note on Isaac - his weight has been the same since Christmas really and he's grown maybe 2 to 3 inches. He's looking like quite the little grown up these days!!!

Getting ready to transition to preschool

2011-05-17T12:49:00.000-07:00

We have a couple of meetings in the next couple of weeks to discuss preschool and have him evaluated. If he qualifies he'll start 4 days a week in the fall - for 3 hours a day. I'm excited for the little guy because he loves Sunday School so much I really think he'll love preschool too!! Its a really good preschool and we are hopeful he'll get in.

I'm a little nervous to transfer to private therapy this summer for the few months before we get to preschool but hopeful because he might start music therapy too. We are even looking into hippotherapy too.

Isaac is doing great in speech these days - he has so many new words! He is also calling his sister Lucy "Lu Lu" and his cousin Georgia "Ga Ga" - its stinking adorable!!!

We are having another boy - which we are terribly excited about!!! I can only imagine what Isaac and Lucy are going to think of him when he gets here!

Eek - the Orthopedic Surgeon is leaving Columbus!

2011-05-03T15:16:00.000-07:00

So as if I needed another sign to fall from the sky and hit me in the head telling me RUN RUN RUN from our doctors in Columbus (Did I mention I tried repeatedly after our appointment to get the promised info from the dietician and I never did get ahold of her or any info? I think she must have left too) - our orthopedic surgeon that put in Isaac's VEPTR device is moving to Oklahoma only days after our appointment in June. Eek! Yeah so he won't even be doing Isaac's first adjustment - EEK! He was the last tiny string holding me there.

I'm one of those people that have trouble breaking up with doctors or therapists, even if they suck. It took me MONTHS to finally drop Isaac's first PT and move on to the much better PT - and I always say "Why didn't I do that sooner!" You'd think that trait would mean I'm easy to please right? My husband would likely disagree.

I shouldn't resist change. I want to do what's best for him. In this PWS community though there are so many different opinions/ideas/approaches - I feel lost a lot of times. I just hope we can find a good fit and soon!

Enjoying Spring

2011-04-23T08:28:00.000-07:00

Isaac enjoyed his cousin Georgia's 4th Birthday party!

Lucy and Isaac playing with their cousins Georgia and Emma

They want to go outside all day long! They are so mad when it rains!

He's not really happy with the glasses :)

We've been having a great time enjoying the outside this spring - hunting easter eggs, helping mommy weed her flowers, going down the slide & basically running wild!

He hasn't gained any since our last appointment and he's most definitely sprouted up there in height!!! The higher hgh dose is really making him grow!!!

Black Bean and Pineapple Quesadillas

2011-04-18T13:28:00.000-07:00

http://www.fruitthewayyoulikeit.com/index.php/fruit_recipes/Eat-me/Simple-suppers/Black-Bean-and-Pineapple-Quesadillas My recipe is not exactly as in this one - but close. I don't use the coriander. I use a little cumin and cilantro. I use whole wheat tortillas and low fat cheddar cheese. I also put lettuce and diced tomato inside after Ive finished cooking them (yeah I pry the cheesy thing back open and stick them in there because I can't get Isaac to eat that stuff on the side or by itself - He doesn't mind it in the warm gooey quesadilla. I've also used red beans and he liked that just as much. Its fast and easy too!!

Hey PWS mom's - We need to share our Healthy Meal Ideas!!!

2011-04-18T13:22:00.000-07:00

Seriously, I feel like I get so boring with the same old same old! Wouldn't it be great if we posted just one recipe every week -or even couple of weeks - of new good stuff we are making our little ones to eat. Seriously, because I'm not that creative to delight every day! I get great ideas for other stuff from you PWS mom's out there - why not share what healthy meals your little one's love!!! Anyone in?? Mandii from Adventures in Asherland is onboard! She may even devote a part of her blog to it - which sounds great to me!!

A better gait

2011-04-14T09:41:00.000-07:00

So Isaac's PT was really impressed with him today. He's doing better balancing on one foot at a time. It seems that his balance beam is doing great at improving his balance and his gait. The VEPTR surgery gave him more of a waddle, but his gait is getting so much better. He's walking with a more forward stride and not so penguinish.

Isaac's Favorite Apps

2011-04-06T07:03:00.001-07:00

I was asked for some more apps Isaac likes and I thought I'd share. We have a lot of different types of apps - because Isaac, like his mom has the attention span of a gnat. These are the ones that get the most use. Well in addition to his new favorite Laurie Berkner app:

Zoola - its an animal sounds one that is easy for them to use by themselves - with a lot of the other ones we have I have to help him along.

icommunicate - We use it to practice speech. I make a lot of storyboards of b, n, p words and so on and try to get 2 syllable simple words.

All of the kindergarten.com flashcards - great pictures and words - plays music after you go through a few - Isaac is a big flashcard kid though.

Verbs with Milo - He even likes the tada that most find annoying :)

ToyStory free book - We have so many good free books! I hate to even pay for a book on here because there are so many good free ones like this one.

The Wheels on the Bus by Duck Duck Moose

The Little Engine that Could by Once upon an app

Signing Time and Smart Hands Lite (he can get the videos to play for Smart Hands really easily so he can play with it himself for awhile)

Grover's The Monster at the End of this Book & Elmo's Monster Maker

Fisherprice's Bigfoot

The Singamajigs

Talking Rex

Going places (It models them going to different places like the mall & how to appropriately act) - We also have itouchilearn morning routines - but I have to help him with it.

iSteelPan - He likes this drum, but he also likes the free guitar app and the free piano app.

Kidzongs - He plays these over and over!

AutismXpress - its has all these different emotions on it - Its easy for him to maneuver.

Adam's Game

He loves sing-a-long games: We have a bunch by Tiger Stripes (you can just look them up in the app store and all of the ones will come up) - Mary's Lamb, In the Meadow, Working on the Railroad, Jack & Jill and If you're Happy and you know it

Dance Star Mickey

My Monster Voice

See.Touch.Learn

The Cookie machine

Chugginton Roundhouse Romp

Word Slapps - great that you can set the level of difficulty

And of Course BARNEY! It has 3 different games on it - its definitely been worth the 2.99 or whatever we paid for it.

Hope this helps!! Let me know your favorites too if you get the chance!!!

New ipad app we love

2011-03-30T17:40:00.000-07:00

The Laurie Berkner Band has an app!! You can listen to all the great songs and watch videos & Isaac loves it. He's a big fan of the Googlehead song - he grabs his ears and dances all silly to it. Oh and did I mention that its FREE??!!! Yeah between that and the signing time videos the boy has a regular MTV for wee ones going on the ipad.

Isaac is singing :)

2011-03-24T14:41:00.000-07:00

My boy is not only a dancing fool (he showed his smooth moves to our PT today) but now he's starting to sing. Its so stinking cute I want to eat him. So when we sing this little light of mine - he says something resembling mine, then screams NO (hide it under a bushel no) and so on. Every verse he's picked up on a word and tries to keep up the melody. He's got like 10 different songs he actually puts a word in there with. He has shown so much more interest in talking lately. His number of intelligible words has went up dramatically in the last few months. I'm loving it!

We have UPD

2011-03-22T17:53:00.000-07:00

Our results show we really do have PWS-UPD!!! We are relieved and thankful. It doesn't change what we thought our chances of having another child with PWS were - you know, only 2 weeks ago when we lived under the impression we actually knew we had PWS-UPD. :)

Will we still have an amnio? Since the previous 9 months of pregnancy with ol Lucy made us blubbering crazy worried idiots - we still just might. Did I ever mention my husband locking the keys in the running car the day of the scheduled c-section?? Did I ever mention the fact my husband still looks at my little girl and wonders if she has PWS to this day? Our experience has really messed with our heads when it comes to having another one - OBVIOUSLY. :)

A Kind of Unbelievable PWS Appointment

2011-03-16T06:57:00.000-07:00

So we had PWS Clinic in Columbus Friday. He is 95th percentile for weight (36 lbs 3/16 oz and 35 or 36 inches tall - up from 60th percentile 6 months ago). He gained the majority of that weight before Christmas and since Christmas has gained around a pound. After Christmas he became much more active (he was sedentary/guarded about his movement for a long time after his surgery) and we modified his diet. I gave the dietician a detailed list of the things we give him now - and she is going to be sending me some guidelines and a plan. I appreciate that. We also are going from .4 hgh to .6 hgh, so that is good. So now to the unbelievable part.

We told the geneticist that we were unsure how we could have UPD when neither my husband nor myself had ever had a blood test. She was dismissive at first, "no you have UPD" but we were persistent and said we were especially concerned in light of the fact that we are pregnant again. She look baffled, flustered, and concerned. Yeah I did say PREGNANT again - good lord we are crazy - and I guess that explains my crazy worried post from last month, apparently the hormones were starting to rage! Anyways, she looked back to the testing and saw that we in fact did not have blood tests, agreed that it is not certain that we have UPD, but likely. So we could have the imprinting one and our chances for having another would be different than with UPD. A pleasant thought for an already hormonal person. So we all had blood testing Friday and should find out in a few weeks if we in fact do have UPD or imprinting.

A little background, say a year and a half ago, when we were pregnant with Lucy, we expressed the same concerns to the very same geneticist, and were dismissed as worriers. I swear the same things were said this time around, but for some reason she actually listened to us this time. Mind you this geneticist has the God complex times 100, she feels apparently so intelligent that she doesn't have to listen or answer any real questions. Her personality has always rubbed me raw - she constantly criticizes WV doctors and early intervention which is offensive ( but mostly because I'm kind of full of myself too and cannot stand being talked down to). She apparently thought we were confused, told us again that we had UPD, and said if we felt so worried to have an amnio and they could do a methylation test.

What made me most upset is the way the geneticist acted. She immediately started blaming the initial WV geneticist for not doing the blood test.
Background: We went to a geneticist in WV in November 2008, She called me in January 2009 to tell me we had UPD. Seriously I was so shocked during the phone call I don't have a clue what she said for sure. The test was forwarded on to this geneticist in Columbus with the PWS Clinic who we saw to explain the diagnosis. We never got a confirming letter or a copy of any results from the initial geneticist, they simply forwarded the testing on to this geneticist, who we saw a month later and she explained that we had UPD, and then sent us a letter stating we had UPD and gave information about UPD. Yeah, so is it too much to ask when you receive a genetic test to REVIEW it to god forbid see if we need follow up blood testing to actually confirm it?

Anyways, thats enough of a rant I suppose for the disaster that was Friday. We are very excited we are expecting another one - but this time I will likely be having an amnio to ease our worries. I'm due October 11th, 2011!!!

and more dancing & painting

2011-03-07T13:37:00.000-08:00

and some dancing :)

2011-03-07T13:32:00.000-08:00

Some pictures since I've been too lazy to write much . . .

2011-03-07T13:14:00.001-08:00

Ma-Ma, Ma-Ma!

2011-02-23T17:25:00.000-08:00

So for the longest time I'd tell Isaac, sweetie you can 't just yell at me and expect me to come running, you have to yell ma-ma - that's my name, like yours is Isaac. Then he'd just grin because he knew I was already there getting what he wanted anyways. But last week it started. I go to the kitchen for a minute and from the living room I hear, Ma-Ma! Ma-Ma! So I run and he wants me to read him a book (He always wants you to read him a book, 50 books really). Of course I praised him ridiculously for yelling at me. Good move mommy. Yeah now he's been yelling Ma-Ma like there is no tomorrow and normally he just grins like a fiend when I get to him. Like wow this thing works so much better than just yelling.

Its seriously one of the best things ever to hear my little guy talking to me. It feels like he's been here forever, but just now we are starting to communicate with each other & I love it!

Great Weekend - Good Ortho Appointment

2011-02-07T08:12:00.000-08:00

So I've calmed down from my last post - and I have to say that my little guy had a great weekend filled with all kinds of family and friends. He played and played and wore himself out playing. He had a lot of energy this weekend.

I just think that as a mom of a kid with PWS I overanalyze every little behavior waiting for the food part to start and I sometimes just freak out - most of the time I'm super positve really - but when you sit back and look at him right now - he's just fine foodwise!

We had an ortho appointment last week with Dr. Willits and found out Isaac wouldn't have to have adjustments every four to six months as first thought. Now he's recommending yearly adjustments (try to wait until the curve progresses 10 degrees, in 6 months Isaac's has progressed only 4 degrees with the device). He said that they have found that really there are only a finite amount of adjustments that work with the device because the muscles won't tolerate more. Its better to limit adjustments. I'm just glad they found this out for us before we were 5 or 6 adjustments in you know? Its weird having your kid be a test subject with this stuff really but we are so thankful for the amazing technology and keep hoping that it advances with us!!! Anyways it lessens our worry about the VEPTR procedures taking over! So that is great news!!!

Aggravated . . . Stressed, Discouraged

2011-02-02T08:13:00.001-08:00

Back in January we were supposed to have our PW Clinic appointment in Columbus. I called the day before since I hadn't received a reminder letter like I usually get. Well the Clinic was cancelled because the geneticist was unable to be there. Thank god I didn't find this out the next day after driving 3 and a half hours. Anyways they apologized, whatever, so the February clinic is full, and so we had to be put in the March clinic. Much to my protest since my little guy has gained nearly 10 pounds since we have seen them last.

Back in October before the tonsils were out, the doctor said that if my little guy gained just a pound he would get the higher hgh dosage. (He weighed 29 pounds then) So in November when the doctor called to say he could go back on the hgh, I asked can't they up his dosage of hgh based on his weight at the pediatricians office which was like 31 pounds at that time. She said she checked and that still wouldn't be enough for a dosage increase. We are only on .4 mg of somatropin. We have been on .4mg forever, since he was this emaciated little guy, not the big toddler we have now. So when this January stuff happened, I asked again if we could get a dosage increase - and they said not without seeing the doctor. Yeah ok.

To top it off they didn't understand why such and such surgeon did Isaac's tonsillectomy, when such and such other surgeon normally does PWS kids tonsil surgeries. Really, I guess I don't understand either since it was your office that referred us to that surgeon. I don't know I guess that since Dr. Hardin left it feels like this PW Clinic has well, just fallen to crap. The doctors honestly can't answer your questions about PWS because that isn't their specialty they just came over there after she left to fill in for awhile. Someone was supposed to be hired to replace her but its been the same clueless people for almost a year! I am aggravated just thinking about it all. I am really seriously considering switching to possibly Pittsburgh or I don't know at this point going to FL for this amazing Dr. Miller they speak of.

I just feel like Isaac is falling through the cracks of this Clinic that is basically falling apart. We get absolutely no guidance on supplements. It breaks my heart to see all these other PW moms out there getting recommendations of stuff to try and much much higher doses of hgh on smaller kids. (I know you shouldn't compare kids like this, but I just don't understand it, its not like we have done growth hormone deficiency testing or even metabolic testing to know anything more specific to guide the dosage, its simply done according to his height and weight according to this dr.) I guess I am just more or less really scared right now because Isaac has gained a good deal of weight since his surgery last August (10 lbs!) and our calories have went down.

I've called to see if there are any cancellations for February, but patience is not my forte. Dr. Hardin was so proactive, so inspiring. This place now is just depressing.

Shake, Babble and Roll

2011-01-26T17:07:00.000-08:00

My two are wild these days - Isaac and Lucy chatter to each other all day long. If only I knew a little of what they were saying . . . They love to watch Barney and dance. The both get on the little trampoline together and move all over. Its a wild wild house. I absolutely love it right now. It is so fun.

I really hope his speech takes off. He is doing so much better with repeat syllables - moo moo, ma ma, da da, etc on command. He babbles in a zillion syllables with his sister, but when you want him to repeat a sound for the longest time you only got ma or da or whatever. Now I'm getting neigh neigh and so on.

A few more pictures of the birthday girl . . .

2011-01-18T00:56:00.001-08:00

A year ago :)

My Lucy is 1 year old!

2011-01-18T00:29:00.001-08:00

We had a little owl - Look Whoo's one birthday for the little one - She was so adorable. She really enjoyed every minute of it - especially all the people around to visit her. I tried to lighten up the fare this time around and make sure there were plenty of healthy options. But of course there were cupcakes. :)

She is doing so much right now its amazing (and terrifying) but I am so happy to have her in our lives. Her big brother absolutely loves her (when he's not pinching her) and has to have her near at all times. His Lucy sign is probably his most frequent especially when he's tired or wanting to get into trouble.

Happy Birthday to my beautiful little girl!

Speech Therapy and the Monster at the end of this book

2011-01-11T07:42:00.000-08:00

So Grover's Monster at the end of this book for ipad is a HUGE hit! We've read this book to him since he was little - but there is something about having Grover tell the story makes my kids go nuts! They love this app for ipad. It is adorable. :)

Per Isaac's speech therapist's recommendation (and with her help), I programmed a storyboard on icommunicate with words like cow - with two sounds for the word - like moo moo, in order to encourage Isaac to make two syllables at a time. We talked about apraxia a lot and how in order to help with sequencing its good to encourage two of the same sounds at first and that will hopefully lead to two different syllable sounds later on. Wow I'm not very articulate at explaining that. Anyways, I have storyboards now with train - choo choo, clown - ha ha, owl - hoot hoot and so on. I also am making story boards with simple sounding words of the p, b, m variety. So pot, potty, pool, pop etc. just to encourage specifically the p sound. Its just like flashcards with my voice saying "pop pop pop" etc. I'm really excited because it sounds like a great way to encourage speech that we haven't really focused on. I mean we do flashcards all the time but this seems more . . . concentrated? Anyways I'm excited.

Christmas fun abounds - My two were really getting into this present thing . . .

2011-01-05T21:01:00.000-08:00

Christmas with Eric's Family

Christmas with my Family

Christmas with our own little Family

Christmas Morning Craziness

Too busy to be bothered by a mom with her camera

Isaac & Lucy really got into Christmas this year & it was an absolute blast!!! At the rate these 2 kid's Christmases are going they'll be asking for Pink Porsche's and Space Shuttles by age 10.

Oh the pain mom . . .

2011-01-05T07:58:00.000-08:00

So Isaac squished his fingers in a drawer this morning, so I ran over and grabbed him and kissed his fingers - saying oh mommy will kiss it and make it all better. He thought that was pretty hysterical I guess so now he's "hurting himself" all over the place and running over with his fingers for me to kiss and make feel better. Its so stinking cute.
Ah, if only a kiss fixed everything else this quickly. :)

Isaac's Favorite Apps of the Week

2010-12-30T20:56:00.000-08:00

So my little guy LOVES LOVES LOVES the ipad that Santa brought him for Christmas. And since I'm just as excited about it as he is (I think I've downloaded every special needs app that exists, at least 4 million I'd say) and in honor of Bridget (Babies with ipads), I'm going to put Isaac's favorite apps of the moment on here for those of you out there who are just dying to know what entertains my silly little guy. :)

1. Signing Time - its 4.99 for the full version, but completely and totally worth it.
2. Free Toy Story Book
3. Talk T-rex
4. Pocket Zoo Free - yeah to say he's a little bit into animals is an understatement
5. Elmo's Monster Maker

I'm excited that thanks to Bridget we just got icommunicate today - so hopefully I'll be working on that to make some personalized boards for him to use like his communication builder device. We use tap speak - but there seems to be so much on icommunicate!!

If anyone else has any apps they like, please let me know so I can pass it along to a boy with the attention span of a gnat, who is loving loving loving his new toy.

The new cousin

2010-12-23T10:39:00.000-08:00

Worn out from all the excitement

Isaac checking out Lily Juliette

Lucy trying to show everyone the baby

Lily was born on December 7th and weighed 6lbs and 4oz. She has dark hair (she might have a shot at a tan, which is amazing considering my brother is as fair as I am) and was super long at 19 3/4 inches. She had to stay in the NICU for almost 2 weeks trying to get the feeding thing worked out - she has a cleft palate and lip - but now she's doing great eating and is at home with a very happy mommy and daddy. Isaac & Lucy love her and can't wait to see her again soon!!!

Waiting for Christmas :)

2010-12-23T10:32:00.000-08:00

They played in a shipping box for almost an hour. Probably an hour longer than they'll play with their toys on Christmas. :)

Playing at the eye doctor with some dilated eyes

Sleigh riding with Uncle Maph

Lucy loving her new gloves

Babies with iPads: I demonstrates iCommunicate to make choices

2010-12-08T18:31:00.000-08:00

Babies with iPads: I demonstrates iCommunicate to make choices

I've lost my camera . . .

2010-12-07T12:25:00.001-08:00

and that panics me! I take at least 5 pictures a day of my kids so to go a week without it has been hard. I need to find it before all the big holiday stuff starts!! Plus I need it because I'm an aunt again today!!!

We are back on the HgH - We are very thankful!!

2010-11-30T06:18:00.000-08:00

So the day before Thanksgiving we were cleared to give Isaac his shots again - same dose for now (.4 mg) and luckily we had some left so we could start right away. It was weird for us getting back in the groove of the shots - especially now that he has a lot more leg to give it in. But we had a lot to be thankful for on thanksgiving this year!!

Yesterday the boy woke up at around 8 am and then was awake the ENTIRE day until 9:30 pm. I don't have any idea how/why he did it but he was wild. It was amazing to see - and not really grouchy or anything. He had 3 therapy appointments during the day and I thought surely he'd nap afterwards - but he just got into other things and finally passed out. I'm not attributing it to the shot or any other supplement - in fact we didn't give him B12 yesterday for the first time in a long time. I guess he just wanted to play. :)

Does the "Gathered View" depress anyone else?

2010-11-29T12:19:00.000-08:00

Mind you I'm a positive person - but I can't hardly bring myself to read that thing. The Gathered View is a newsletter put out by the PWSA- USA. Its bleak. Its "inspiring" stories are not inspiring. It just reinforces the sadness I felt when our baby was diagnosed and reminds those of us presently in the blissful hyperphagia free land of the food stealing horror to come.

A good chunk of it focuses on the money and who fundraises which I guess is a positive thing - but the other stuff in there is mostly, well bleak. I think in the early stages of diagnosis it was very helpful with the information it provided - but now I think I'm better off not reading that each month.

My Happy Little Kitchen Band

2010-11-22T19:00:00.000-08:00

This is my silly crew entertaining each other while I cook. Lucy is in Isaac's clothes because earlier in the day we were out and about and she had a poo explosion and I had only packed an extra outfit for Isaac (He is usually the messy one). They are really fun to hang out with these days. :)

Clint Hurdle is coming to Pittsburgh

2010-11-16T06:37:00.000-08:00

So the Pittsburgh Pirates hired Clint Hurdle as their new manager. Who is Clint Hurdle you may ask? Well his daughter has PWS and he's a huge advocate for our cause!!! I guess he was impressed with Pittsburgh's Children's Hospital so it makes me want to check it out. Its just as close as Columbus really. We are lucky to be central to so many choices I guess. Yeah lucky we don't have a children's hospital in our own state - how messed up is that. Go Pirates!

http://www.usatoday.com/sports/baseball/nl/rockies/2005-09-12-hurdle-family-cover_x.htm

Sleep study on sunday - hoping to get back on the Hgh

2010-11-12T10:21:00.000-08:00

Isaac hasn't been on growth hormone since July 21st. :( But now the titanium infused, tonsil and adenoid-less Isaac may get to go back on as early as next week!! He's already wild - we can only imagine what it will be like to get back on the good stuff. We have high hopes all will go well on Sunday night with his sleep study - so keep us in your prayers! You have no idea how much this stuff means to PW kids!!!

Love is all around :)

2010-11-08T18:51:00.000-08:00

We took the kids to see Veggie Tales last week, which Isaac enjoyed, until Maddy (the most adorable 2 year old blonde cutie from Sunday School) sat next to us. First thing she did upon sitting next to us was to lean over and kiss Isaac straight on the lips. Then it was Maddy Tales for Isaac as all he wanted to do was sit next to her, hug her, smooch her, and play with her hair. I was embarrassed, but it was cute, so I didn't really know what to do. The boy is a lover I swear. He loves the love. Most kids aren't into his affection, but Maddy sure didn't mind a hug now and again. They were two little buddies and I loved it. My guy made a friend. :)

Focusing on some sign language

2010-11-03T12:52:00.000-07:00

So this week I bought pretty much everything Amazon had to offer which was Toddler/Baby sign language related. Isaac is doing great signing these days and what is surprising to me is that the words he signs the most are the ones he is starting to verbalize. More is signed and now accompanied by "mo mo" and please even has some verbal thing to it (which you can't really understand as please but he's signing please, so I am pleased :)

So if we actually got more words signed then we might be able to use them more and more and he'll eventually process them upstairs and be able to say them. We've kind of been lazy on new words lately, so unless we are in a zoo his words are limited. :)

The boy also keeps running a fever - no ear infection to be found - they gave us some antibiotics today so we are hoping that stops very soon!!!

Some dancing while waiting for the carousel . . .

2010-10-25T20:38:00.000-07:00

We've been busy!

2010-10-25T20:05:00.001-07:00

We've been all over lately! I love fall!! Its my favorite time of year!! & its festival season here in WV so there's always stuff to do! I feel like we are really getting the kids out there. I have started taking them to a play group at the library & they have been enjoying that (they even had a Halloween party like they were big kids!).

We never heard anything back about the ACTH test so we are guessing that is good news :)

We have a sleep study in November and cannot wait until we get back on the HgH! He's been off since July and we are really excited to get back on!

When we went for our PW appointment the first week of October he was in the 60th percentile for both height and weight and they were pleased, not concerned.

Sorry for the rambles, and blurbs but I wanted to update. OT has recommended using his z-Vibe more (vibrating the muscles around his face) and working with sour foods (like lemonade powder, we used cranberry crystal light today) to get him to use his mouth muscles. Speech Therapist has recommended working on single sounds and trying to get him to hum. He is trying to say everything these days it seems - he sounds wild, but he sure is trying! The humming because he is so into music and dancing and pretends to sing all of the time.

PT we still need to work on getting him to get himself out of the floor when there is nothing to pull up on - and crawling - he still struggles and doesn't do it often - we are all walking and FAST at that. We have used the exercise ball some and he is doing great. She recommended getting a little toddler trampoline for him.

Anyways - he is well and happy, which is all I've ever hoped for. Lucy is keeping him on his toes!

Here's a video of Isaac and his cousin Georgia at the Black Walnut Festival riding the carnival rides. He LOVED LOVED LOVED it!

Babies with iPads: I uses the iPad to match animal sounds

2010-10-22T06:49:00.000-07:00

Babies with iPads: I uses the iPad to match animal sounds: "I is developmentally delayed due to Prader Willi Syndrome. He is using the iPad to match animals and animal sounds. He is also imitating s..."

Tonsils & Adenoids are out

2010-10-04T10:49:00.000-07:00

We are in Columbus today and his surgery has just now finished. Apparently his tonsils were big but his adenoids were huge. She said we should see a big difference. I'm excited!

He was in such a good good mood yesterday when we got to the hotel. He walked around and around in his Spider Man jammies before getting a bath and going to bed. I think he just likes having me and Eric to himself. :)

VEPTR x-rays: Before and After

2010-10-04T10:31:00.000-07:00

BEFORE:

and AFTER

Insane isn't it?? What's truly amazing for us is how fast the curve progressed from December of last year to April of this year. Its been 6 weeks today and he is definitely back to his old self. The one who likes to take Lucy's clothes from her closet and throw them in the toilet. :)

Sneak peek o cuteness

2010-09-27T17:35:00.000-07:00

I LOVE Halloween!!! So yeah I couldn't resist dressing them up already. :) Isaac really likes his hat and wants to wear it around the house. I love it!

2 year pedi appt - a little late

2010-09-23T19:58:00.000-07:00

So in the midst of all that was the month of August I kind of forgot about the boy's 2 year pedi appt. When someone from the hospital called to discuss his upcoming tonsil surgery she asked if he was up to date on all his immunizations I realized I forgot - so two months late we scheduled an appt - and wow - he jumped from the 5th percentile in weight to 60th percentile - PANIC SETS IN. But I have to remind myself that first, its two months late (doesn't this count for something???) and the boy has been sedentary and off growth hormone for two months!!! I'm not really flipping out too much just yet - I just want to get my little man moving again! (and back on the hgh!)

So it made me extra specially happy to see my boy going wild today in PT and speech. He was back to his happy mobile little self. First, he said like 8 words he never really tried before and they actually sounded like what she was asking for. I swear the boy just tries to impress her. He loves her - its embarrassing almost. :) Then in PT he was sitting on the floor and getting himself up and then picking stuff up from out of our ottoman full of toys. This by far has been the hardest thing for him to get used to - using his arms to get himself up and around. Its like he hasn't figured out how to do it with the VEPTR in just yet. Plus he has such spindly little arms. But it will click - he's walking pretty well and all nosy and into everything like he was before :)

Amazing Adventures of Ayden Jane: Sibling Effects

2010-09-19T20:12:00.000-07:00

Wow I have to say reading this blog post tonight brought a tear to my eye - how special siblings are in a PW child's life. Where she writes about seeing God so vividly in filling in all of the weakneesses - I pray for faith and courage daily and its sweet to see a child who has so much faith. :)

Amazing Adventures of Ayden Jane: Sibling Effects: "I have posted before about the profound effect Kayla, Noah and Mckenna have on Ayden Jane and vice versa. I am so proud of all of them and ..."

Looking Good

2010-09-12T19:34:00.001-07:00

Isaac is looking and feeling pretty great right now. He is walking along the walls again - not completely back to his carefree walking self before - but getting around much much better. His smiley silly nature is back and he is getting quite attached to his sister. At his appointment on Thursday, the doctor took x-rays again and he said it looked great. His scar looks nice & thin as you can see in picture 2 there. And of course I had to throw in a little Lucy because she is cruising and into everything.

Thanks everyone for their thoughts and prayers! He is really getting along great. The improvement in his breathing is amazing. He no longer snores all night! He is so straight its just crazy. It has made such a huge difference and to think that he'll be able to grow straight like that now just makes me so excited.

Walking a little

2010-09-06T17:24:00.000-07:00

So the boy is walking a little around holding our hands (and actually using the support). He chased his cousins around this weekend so that was a great motivator. He's still getting his medicine about once a day and getting fatigued pretty easily. His follow up appointment with the surgeon is on Thursday so hopefully we'll see if we need to be doing more/something different and see how the doctor thinks he's doing.

His back after VEPTR surgery

2010-09-01T19:36:00.000-07:00

I'm posting this for those out there interested in VEPTR surgery - because honestly there is so little information out there on it. Isaac has 3 scars on his back which I know will look even better once all the nasty plastic and bandages come off but just to give you an idea of it - Here is his back after surgery. He has one longer scar at the top in the middle and two smaller scars on both sides of his lower back which are partially hidden by the pamper. Much smaller than I'd envisioned in my mind - and already healing. I'll have to show another picture after the bandage comes off.

My boy is cruising again :)

2010-09-01T19:22:00.000-07:00

His new horsey

After a healing hug from cousin Georgia

The sheer joy on his face leaving the hospital in a wagon :)

Tonight Isaac and Lucy both cruised around the ottoman! Its crazy! I'm scared what the next few weeks mean for me since they are both getting so mobile at the same time . . .

Well, its been 2 weeks today since his surgery and he is doing so great!!! On Monday he took 10 steps for my Dad (my dad just held his hands and along the boy went). Then yesterday he walked a little so my Dad could show my mom. He obviously works hard to please my parents :) and tonight he walked around the ottoman on his own with Daddy following close behind. He sits on his new rocking horse without any complaint and has started to roll again. He isn't sitting himself up yet or anything but he is definitely making progress!!!

Sorry - We have been off the grid for a week

2010-08-29T18:48:00.000-07:00

So we got out on Monday because I think the doctors were sick of us. It was like well the fever was gone for 12 hours and boom out the door. We loved it. Just be difficult I guess and make a lot of demands and they will get you out the door quickly. We didn't get to see a PT and lord knows the boy wasn't walking - he's still not walking a week later - but we were free!!! Isaac did pretty well on the drive home with some big pillows and for the last week he's been sitting in a pile of pillows at Grandma and Grandpa's house in Precious little Procious, WV where there is no internet (sorry blog). I didn't think Eric and I could handle it on our own since Lucy is crawling and all over the place. It was so nice to be near the grandparents (on both sides) to help because the first days home were crazy.

He only stood for seconds at a time - and with great pain for the first couple of days. The last two days he stood for maybe a minute at a time but without the screaming. He didn't want to move his head at all in the beginning. Just now he will move it from side to side. I guess with kids when they feel the slightest pain they stop where with adults you can force them a little more. With us, when he screams we stop. Anyways - he is doing great now in comparison. I have pictures and x-rays to share as soon as I get it together but we just got back home and there is tons to un-pack. The smiley little boy is back and I am amazed how great this is going to be for him. Totally lifechanging.

Some more pictures . . .

2010-08-22T18:35:00.001-07:00

Day five post surgery - Dear lord please get us out of here

2010-08-22T18:22:00.000-07:00

So the little boy is still in pain & does not want to sit up. Further he does not want to attempt to walk, and does not want to be touched by anyone anymore. I feel sorry for the cutey and hope and pray we get to take him home soon because maybe it will be a little better there on our own turf. He has eaten and went to the bathroom, but he has had a fever the majority of the time since surgery.

So on our list before we go home is 1) get him to walk (god help us on that one, because I think that may take weeks as big of a change this is for him) and 2) not have a fever for at least 12 hours in a row. Today we switched from the Lortab and Teradol (msp) to Tylenol with Codeine. He was itching pretty badly yesterday & he has been itch free today! We put him in a wheelchair 3 times today and took him to the playroom to look around - he barely holds his head up and kind of slumps in the chair, but we were out and about, so that's something.

Sorry to ramble we've just been couped up in here and are getting a little nutty. Oh and thankfully we will get to talk a PT before going home to give us an idea of the limitations we will be facing. Its looking to us today like its going to be a long road to complete recovery - but from what we've heard everything should be great in 3 or 4 weeks. Its just so hard for the little man right now - poor fella.

A few pictures while he's sleeping . . .

2010-08-20T11:48:00.001-07:00

Straight out of recovery to sleep it all off for a day

Pre-surgery with his newest favorite thing a HORSE!

Just before surgery in his little cage looking like Eric's mini-me

Loving his new puppy that Emma and Georgia sent him with some Elmo & Spongebob balloons

Day three post surgery update

2010-08-20T11:39:00.000-07:00

So today the boy sat in a chair surrounded by pillows all by himself. :) He read every book we brought, which was around 100 books - and flashcards. He is doing exceptionally well according to our doctor and may be released Saturday or Sunday, which is pretty mindblowing. He still cries when we move him around from place to place or even when we switch positions in bed - but tolerates the position after we get him there. Last night we had a little freak out when he was woken up by a noise and he screamed for around 5 minutes like he was in some medicine induced nightmare - wasn't pretty - poor fella and mommy were crying. He got some pain medicine and calmed down.

He is eating real food today -1st meal: 3 mini pancakes, strawberry yogurt and a banana. They took out the catheter this morning and took him off Oxygen (they figured his baseline breathing was lower anyways because of his sleep apnea - so he normally breathes around 90 which is around where his 02 level was lingering without the oxygen). Really he's only hooked up to an IV. Still had a lingering temperature this morning so we started a new medicine that I can't remember the name of off the top of my head - but he's on it and Lortab. It kind of scares me that they are going to let us take him home already - wowza. But he is feeling much better today and you can see it.

Oh and remind me to post a picture of our before x-ray and after x-ray - it is INSANE the difference. INSANE! Must get to a scanner soon!!!

We made it through surgery fine - to the healing part now!

2010-08-19T08:48:00.000-07:00

So the surgery yesterday was just a little less than 4 hours start to finish. I honestly heard the words "excited" and "lucky" come out of my mouth when talking to the surgeon before he went in. In reality I was pretty terrified - but am so so glad it all turned out so well so fast. When they called us early and said he would be out about half an hour earlier than expected I PANICKED - because I seriously thought something must have gone wrong and that is why it didn't last as long as we thought. How was I to know it was because everything went so well? Its just crazy and an amazing blessing. So many many many answered prayers.

He was in recovery for a few long hours but we finally got to see him in a regular room (not ICU as we expected). I will post pictures of my cute boy later - he looks a little rough at the moment. He did well and the device looks great apparently - he is still in a great deal of pain - and he kind of acts like he's scared to move. I got to hold him for a half an hour today - and he just blinked while i kissed him repeatedly.

I just wanted to throw a quick post out there - I'm just so ecstatic its over - Of course now I have to refrain from buying that $40 dollar elmo in the gift shop for the boy because lord knows he doesn't need another elmo stuffed animal. He already has a giant elmo balloon and a giant blues clues balloon and a horse we bought him yesterday - but when he's so pitiful I would seriously buy that child a Porsche if he asks (or signs please - that one gets me everytime).

Thanks for the prayers!!

OTL: Pau Gasol And The Path Not Taken

2010-08-09T14:35:00.000-07:00

I like how Gasol asks what the pulmonary implications for a 2 year old would be if you fused their spine at that age. Um not very good Pau, that's what we were told. :)

Pre-Admission Testing done, the countdown begins . . .

2010-08-09T14:28:00.000-07:00

Well after a 5 hour long series of appts Friday we are ready for VEPTR surgery I guess. Poor little boy got stuck 7 times trying to get the blood tests needed done. After awhile I thought they were just digging for veins - it wasn't pretty. He looks like a heroin addict today with all the bruises.

Well Isaac is at my knee asking to watch Elmo videos on the computer right now, so obviously that's enough blogging for now. :)

Babies with iPads: I imitates animal sounds using the iPad

2010-08-09T14:20:00.000-07:00

Babies with iPads: I imitates animal sounds using the iPad: "I is making animal sounds when he sees the animals or imitates their sounds after he hears them. "

blah

2010-08-05T06:51:00.000-07:00

So Isaac's tonsil surgery is going to be october 4th - he had to wait 6 to 8 weeks after the first one to recover. They couldn't do it at the same time because there was no ENT surgeon available on the 18th (when his back surgery is scheduled). Anyways it stresses me out either way. I wasn't wanting him to have both at the same time really. I know it really won't be that long - but boy we miss the HgH. Right now I basically let him sleep with me and Eric and stare at him snoring the whole night. Good god, and to think that the HgH can make them grow back again. So crazy.

We leave this evening to go to columbus - Tomorrow he has to have his pre-admission testing done. Tomorrow I turn 30. oh joy. I think the combo of the back surgery and the tonsils - and the last day of my 20's just has me in a tizzy. :) Having a special needs kiddo really aged me like 30 years in 2. :) I have the white hair to prove it. He's cute though so I guess we'll keep him.

Tonsils & Adenoids OUT - woohoo!

2010-08-03T21:34:00.000-07:00

Ok so we knew it really before we even went to the ENT today - but the boy has to have both out and I think its going to help him SOOOOO much. Hopefully everything will work out and he can have them out soon and get back on that growth hormone!!!
Of course the lady mentioned asking the orthopedic surgeon if we can take them out at the same time he is getting his back surgery and that kind of made me want to puke just thinking about my boy going through all that at once - so hopefully not TOO soon I guess.

Thanks Desirae for the Blog Award!!!

2010-07-31T20:41:00.001-07:00

Desirae from Our Life with Prader Willi Syndrome in Las Vegas (http://pwsvegas.blogspot.com/ - sorry I'm not great with the linking) gave me my first blogger award! So now I'm supposed to share 7 things about myself as part of the rules:

So hmmmmm . . .

1) I actually enjoy watching Yo Gabba Gabba along with Isaac and Lucy.

2) I have more freckles than I know what to do with - and I promise I wear SPF 4 million daily.

3) I have needed to have my wisdom teeth taken out since before Isaac was born in 2008 but I keep putting it off, and no they are not giving me any extra wisdom by hanging around.

4) I love "Arrested Development" and cannot wait for the movie to come out!!!

5) I want an iPad so badly now that one of our therapists is using one with Isaac.

6) I could live off of chips and salsa - I'm sure of it.

7) I have been trying to lose the 40 lbs I put on with Isaac since well forever (except for that pregnant with Lucy period) and I cannot seem to do it and the fact that I can't lose weight without all the PWS issues makes me so panicked about Isaac and his future food issues that I want to stress eat (which my husband said is absolutely silly, so put down the food angie).

Thanks for the award Desirae - I appreciate the nod!!!

So I am going to pass it on to Adventures in Asherland http://www.amandagatkins.com/ and The Fields Triplets http://fieldstriplets.blogspot.com/ if they would like! They have great blogs that you should definitely check out!!!! Oh and check out Babies with iPads too - Bridget knows she's awesome so she doesn't even need an award :)!!

Babies with iPads: I. signs using the iPad

2010-07-30T18:05:00.000-07:00

Babies with iPads: I. signs using the iPad: "My video skills are for the birds so sorry. I is finding animal pictures on the iPad and signing the animals as they made the sounds. He ..."

And not to leave Miss Lucy out

2010-07-29T14:00:00.001-07:00

Isaac doesn't think she's all that funny

Not fair, this one is rotated on my computer I swear

More summer pictures

2010-07-29T13:45:00.000-07:00

Here's a few more summer pictures of the boy

Playing with Georgia and Emma the day after Bible School

Having fun with Aunt Debbie (Cowgirl Debbie for the day)

Ask Isaac about the horse and to this day he gets a look of PANIC . . .

The day after his birthday tearing through all of his presents again :)

Frickety frick - we have sleep apnea

2010-07-23T19:58:00.001-07:00

Well we have to stop the HgH for a little while so we can go for an ENT consult and see about possibly getting his tonsils/adenoids removed. He has an obstructive apnea. We want what's safest for him - no doubt - but its just sad to go off his wonder drug. :) It makes me think back to life without growth hormone . . . :(

Happy Birthday to my favorite boy!!!

2010-07-17T21:49:00.000-07:00

Happy 2nd Birthday Bubby - we had such a good day with you today!!!! I hope you loved it as much as everyone else did!!! You had so much fun playing with everyone!!! I can't believe we've had you for two whole years already!!! We love you!!!

He's Looking Good!

2010-07-13T20:15:00.000-07:00

So the boy is 34 inches tall (in the 55th percentile) and 24 lbs (for the first time in his entire 2 year life on the charts at the 9th percentile) and they were very pleased with him! We didn't see the geneticist at this appt (who we like) but the endocrinology doctors were nice. They didn't increase his HgH - he just hasn't gained enough weight to do so. The doctors were "nice" - I hate to get locked into that, I'll keep people around longer than I should because they seem nice enough - I hate to "break up" :) My husband is thankful for this trait in me and he kind of has it himself. :) I miss Dr. Hardin - she was awesome - these people are just ok. I feel like its a wasted drive somewhat. We do like the orthopedist that is doing his VEPTR surgery in August so we are kind of stuck in a relationship with Columbus now.
The dietician didn't really give any guidance - no charts, no numbers, no suggestions (other than to limit gatorade and juice, and sugary things like that - to which I wanted to sarcastically reply, oh really?) She said it seems like he's doing fine. I guess I should just be pleased and calm myself, but I get a little testy these days like I'm a constant advocate for the little man. Like I need to fight for him. Enough complaining! He's doing wonderfully though & we can't wait for his big party on Saturday!!! We still have to have a sleep study in Columbus on Thursday night and I think I'm going to take him by myself for the first time - so wish us luck!

PWS Clinic in hours

2010-07-08T22:16:00.001-07:00

Yeah so I'm up still trying to get things done and we have to leave in like 4 hours to go to Columbus for Isaac's PWS clinic appointment - I'm betting I'll be regretting the lack of sleep later. :) But I am excited to show him off at our appointment - He's done so much since we last saw the doctors! I really am proud of how far he's come. The PT said this week that his legs were getting more definition and getting much bigger. The creatine is helping (even though its not a daily thing, I still worry) and he just seems to be doing so well. We still haven't had the sleep study done that we were supposed to before our appointment, in fact its scheduled for next week (yay two weeks in a row to drive to columbus, oh joy) - but we are hoping that if all goes well with that they'll agree to up the Hgh. Well I hope this makes sense, because good lord I'm tired.

My tribute to our beloved Senator Robert C. Byrd

2010-07-02T20:42:00.000-07:00

Ok, its a little wacky, um maybe a little messed up to post this. But when my little boy was born the only thing I could think of was my god he looks like a little Robert C. Byrd. A little sickly Robert C. Byrd. It was the only thing that got me and my husband through that first week I think was to laugh at that - yeah I know, what a weird sick sense of humor we had. Good lord we even looked up what the C stood for in case we needed to name Isaac that. We did not (since it was Carlyle :) but it kept our mind from thinking wow, what is wrong with our poor little man.

Robert C. Byrd passed away this week at the age of 92. I, like every other West Virginian, loved him. Here is my tribute to him. :)

Countdown to 2

2010-06-29T19:22:00.000-07:00

I can't believe it but its almost here! My little man is going to turn 2 on July 17, 2010. I decided to try to branch him out of Elmo world by having a Mickey mouse party, but the boy isn't wavering from his Sesame Street fascination. Its so cute. The only other show that really gets him going right now is Yo Gabba Gabba. The boy really loves to dance. :)
This week he's getting plenty of bonding time with his cousins, Emma and Georgia while they are all going to vacation bible school with Grandma and Grandpa. They have been swimming nearly every day and trying to wear each other out and get good and sleepy before they pump them full of sugar and throw them in with a bunch of other wild little kiddos at bible school.
He's getting braver walking around the house from thing to thing. I'm pretty excited at that and at how much he seems to understand when we are talking to him. He is trying to use more words, but the Speech Therapist really believes he'll take off as he gets stronger trunk wise. I'm excited for him and I'm trying not to go all overboard on the birthday - but I tend to do so when it comes to him.
Lucy is rolling all over and spinning in circles and eating like a little piggy. She's my sweet little chunky girl. She really likes her brother and gets all excited when he tries to talk to her. She's already saying ba ba ba and screaming loudly. She's going to be a talker and just wear Isaac out I think.

A little rambling thought

2010-06-16T20:50:00.000-07:00

I want to preface this by saying I love love love love love my babies. I love them both a whole lot. I have to say that this second one is just growing up way too fast and its blowing my mind. Having Isaac as our first child was such a completely different experience. I had the chance to appreciate every little thing with him. My brother joked with me once that I clap for Isaac even when he poops, but you get the idea.

But with Lucy (who is *gasp* already 5 months) its like every day I look at her and she is doing something new. And its all so easy for her. She is already scooching herself back on the carpet and spinning in circles. She basically does baby pushups all day and smiles and laughs about it. :)

So it makes me think, wow, how hard things must be for Isaac. I never felt that way before about Isaac you know, but now that I have a constant comparison, its like I feel sorry for him? Does that make any sense? I know Isaac is doing so great and the happiest little guy on the planet, so its not like I have any reason to feel that way for him, but seriously this little pudgy girl is going to pass him up in no time. I feel bad he has to work so hard for everything, when Lucy doesn't have to.

I know that will always be the way it is and I need to deal with that. I had a PTSD like episode right after Lucy's birth where all that surrounded Isaac's birth came back in a bad bad way. I was terrified that it was all going to happen again and seeing what is "normal" put me in a tail spin. Isaac was my normal, and it took Lucy to show me how different he actually was. I'm in a much much better place now. But sometimes when Lucy does something awesome, its as if at first I don't get excited, but I'm like wow, I didn't even have to work with you on that, you just did it. Its not the same celebration, its more like oh, that's how its supposed to be. Now I don't want you to go around thinking that I'm not excited as all get out about ol Lucy Lu because I am - she is total sunshine and I constantly kiss the pudge's face, it will probably fall off soon from over-kissing - I just celebrate her milestones much much differently I guess.

Anyways, as if there really is such a thing as "normal" :)

Been MIA. Back from the beach :)

2010-06-14T18:40:00.000-07:00

Isaac and Lucy had a great time with their cousins and family at the Beach this week. We went to Rodanthe, NC on the Outer Banks. The weather was great and the kids loved swimming. Here are just a few pictures. Lucy turned 5 months today which is insane. And its only a matter of weeks til my precious little boy turns 2! Sorry for the sideways pictures once again. :)

Major Developments - MAJOR!

2010-05-20T20:04:00.001-07:00

I've been hesitant to post about my little fella's um WALKING, but listen people he just turned 22 months and he's all over the place. He took the first few divey like steps weeks ago. He took 3 for his OT Sonya, and then a few more for his therapist Bridget, but I never really "counted" those steps I guess. I guess I was waiting for him just to take off on his own and do it. Week after week he's become a little more stable. Today in PT he crawled across the room pulled himself up to the ottoman and then proceeded to take 9 unassisted steps to the PT. This unprovoked walking is quite new and quite AMAZING. He really is walking. He's done it all day, from ottoman to chair, from chair to me.

Always before he leaves one of our hands and is coaxed into walking to someone or something, or to chase after something he wants. To see him actually just take off walking on his own seriously brings a tear to my eye. I didn't really get emotional while the PT was here, but I am a little now thinking about it.

I just think back to when he was born and we didn't even know what he had. We didn't think he'd ever walk. Then we got a diagnosis of PWS, and still thought, what will his walking be like one day and when will it ever happen? That seems like yesterday and to look at my little goofball sitting in the floor pretending to read the little engine that could (babbling to himself and pointing) right now makes me really proud. He's come so far and is doing so well. I know the food part of this disorder is still to come and still pretty messed up if you ask me. But not one single thing we've had to go through so far has been bad really, just different.

My mom has a sign up in her house that says: God doesn't change the circumstances of our lives, he just changes our attitudes towards them. I guess today I'm feeling especially blessed. :) Of course call me after he has this VEPTR surgery August 18th, and I'm sure we'll be a mess, but oh well, its baby steps this process.

New pictures

2010-05-18T18:01:00.000-07:00

Super Pudgy Lucy who is now 4 months old!

His new glasses from the side

Cute boy in his new glasses

Success with the Glasses - Yay Miraflex!

2010-05-12T19:43:00.001-07:00

We got his stylin new glasses - actually he looks like the painter on Yo Gabba Gabba - and he has worn them nearly all day for the past two days!!! Its awesome. And they fit well on the nose so that really helps. I'll post a picture soon.

Sweet Jealousy :)

2010-05-09T16:48:00.000-07:00

Bear with me its sideways. So this was Lucy playing in "Isaac's" Jumper. He got a little jealous and started bouncing outside the jumper. I'm going to try to do better next time and remember not to turn the camera sideways. :)

So now here's Isaac's turn in the jumper now that he's about 2 feet too tall for it. :)

May need a helmet :) Spiderman preferably

2010-05-07T11:22:00.000-07:00

So my boy wants to walk. ALL the TIME - everywhere. Can he walk yet? Not really. He can cruise and get brave, and walk holding one of your fingers, or your whole hand if he's tired. The thing is, he thinks he can walk. So he takes off, and repeatedly face plants into something or hits his poor little head on stuff. Its awesome, and exciting, and sad all at the same time. I'm like go little boy go, then oh honey I'm sorry I didn't catch you in time. Oh I'm not just letting him wander out there mind you - I do catch him 99 percent of the time, but that 1% I miss is going to get him a concussion by george. He's doing so great though. His PT has been off for about a month because she had a surgery and she was so impressed with his progress while she was gone. He's doing soooo much. I'm in definite trouble. :) Oh its 85 here and gorgeous today (yeah i'm rubbing it in to anyone in cold weather) :)

My boy is a ladies man

2010-05-02T18:07:00.000-07:00

Isaac and his Grandma Cindy

Getting ready to smooch on his Auntie Bebo

Loving on his cousin Jamie

Loving on his cousin Jessica

Me and my little man (with my hubby & little Lucy in the background)

This boy manipulates the ladies to get his way - that is for sure! He charms nurses and kisses all pretty gals. He twirls their hair and um, gets all up in your business when you hold him. (Sorry Aunt Debbie) He's a little touchy feely :) So watch out ladies - My boy will probably start dating in like 10 years :)!

Well VEPTR surgery it is

2010-04-30T07:56:00.000-07:00

We had our follow up with the orthopedic surgeon yesterday to go over the MRI results (spine is normal). His curve has increased pretty dramatically in the last few months because he's just growing so fast. (from 31 degrees to 50) So next week we are going to set up a date for VEPTR surgery. (check out veptr.com i think which gives a lot of great info on it - they are also called titanium ribs) It will be early summer he thinks. We are scared but really excited. It sounds like it will do wonders for our little man and give him a chance at straightness. :) He'll have to be in the hospital for about a week, which is going to be pretty crazy. He's so wild right now I can't imagine keeping him couped up in the hospital for that long without him screaming and running through the halls. I am hoping it will help his speech too to get him straightened out some with this procedure. Sorry its a crazy ramble, I'm just thinking out loud I guess.

He's up to 22 lbs and they said like 32 inches (but i swear they never really take the time to measure him correctly unless you are at the endocrinology office). He was supposed to have another sleep study at the hospital to check for apnea but he was sick and snotty and so we rescheduled for May. Boy oh boy its shaping up to be a wild and fast spring.

These flipping glasses . . .

2010-04-20T19:43:00.000-07:00

Short of duct taping them to Isaac's face our time in glasses is short. The boy is not a fan. We've had them since December, and its such a battle! Well last week the doctor prescribed us some drops to dilate his eyes so that he'll have to wear his glasses in order to see. Which like most things we are told to do with Isaac sounds similar to baby torture. :) But by george it worked. But his poor eyes stay dilated forever. I'm still thinking of getting the soft rubber ones instead of what we have so that he won't be able to look over them instead of through them. This is just a blubbering rant I know. I could use a nap. :)
Oh and the boy stood by himself for like 10 seconds today - it was AWESOME. We are so close to walking it scares me!!!!!

What we've been up to lately

2010-04-10T20:17:00.000-07:00

Showing Lucy how its done

Protecting Lucy from Gus the pug

Getting dressed up for a wedding

Listening to cousin Georgia tell him stories

Ah, nothing like some easter hives to start off spring . . .

2010-04-10T19:58:00.000-07:00

Good Friday was gorgeous and near 90 here in WV. Me and the little ones were outside on a blanket enjoying the lovely weather & pollen all day long. :) Then my mom and dad brought two little ducks for Isaac & Lucy for Easter. They loved them - the ducks followed us all around our yard and were so cute. Fast forward to Saturday morning when Isaac woke up with the worst case of hives I've ever seen - which is saying a lot since my oldest brother used to get hives all the time. I'd post a picture but its just plain gross, poor kid. After benadryling him to death we finally took him to the pedi on Monday and got some Prednisone which cleared it right up. Thank God. So instead of Easter sunday festivities we stayed inside in our diaper itching & scratching. Poor little guy. He's really moving though lately so I think more steroids would be welcomed!

He crawled!!!!

2010-03-29T10:22:00.000-07:00

Isaac crawled today for the first time on all fours. He had army crawled occasionally but this was the real deal on hands and knees!! He crawled to his therapist Bridget. She asked how long he'd been crawling, and I was like he hasn't been. :)

I'm so excited! I like to think that the Creatine is helping. That and having a new little sister has forced him to want to be more mobile since I can't pick him up all the time now. I am just really excited for the little guy. I am going to try to videotape it and see if I can put it on here. :)

MRI=Success

2010-03-25T20:13:00.000-07:00

The MRI went well - we should meet with the Orthopedist late April to discuss the results and talk about VEPTR surgery. Isaac was a flirt with the nurses - we even left him with his main nurse and went to lunch (it was a long, long, long, long, long day) which we've never even considered before, but he was seriously in love with her and happy as a clam. Oh plus she gave him toys and blew bubbles for him. He still weighs just 20 lbs. the little goofy man. His sister weighs 13+ at only 2 months. :)

Side Note: We put the little man in a toddler bed and he absolutely loves it. He gets out and plays with his toys. I really think its going to spur him on to walking. He cruises all over - but actual walking hasn't happened yet. This may be just the ticket.

Welcome Spring!

2010-03-19T21:42:00.000-07:00

My boy is 20 months old - 20 months and 20 lbs. :) Finally! We are still on .4 mg hgh, but we are heading in the right direction. Our Dr. Hardin left Columbus Childrens' Hospital - so we are freaking out a little because the endocrinologist we saw on Friday was well, kinda douchey. Yep, that's the best way to describe him I think. So we really want to get the VEPTR surgery there but things are not looking good for us in the way of the PWS clinic - its going to be more like we'd see a hodge podge of whatever endocrinologist is there that day - and I don't think I'm wanting my kids future to be guided by a new doctor every couple of months. Oh and he isn't big on appointments all that often -so we lost the aggressive approach that Dr. Hardin advocated. Come back Dr. Hardin, or sadly I'll have to google stalk you and follow you to your new hospital with Isaac. :)

Creatine

2010-03-08T07:48:00.000-08:00

We started giving Isaac a creatine supplement this past weekend. We thought long and hard about it and decided to go ahead and give him a small dose. I'll update if we see any changes. Its all so scary when you feel like you are winging it with your kid's health.

Splash N Play Wednesday

2010-03-04T07:22:00.000-08:00

I went to Splash n Play Wednesday yesterday (I like the name) with Isaac and had a great time. A local physical therapy office allows the use of their therapy for an hour or so for a group of us with special needs kiddies. Isaac loved being in the pool and how warm the water was. He also liked being around the other kiddos. Splash n Play came about as part of the Moms In Common group that was started by my EI developmental specialist, Bridget Bailey (who is awesome by the way). It is a great group of ladies of special needs kids that tries to get together for play dates, lunch, etc. I am hoping to become more involved as I get better at managing 2.

It has a nice website too: www.momsincommon.org

Oh and there is also a resource fair coming up here in WV - Check it out at www.ryleesrally.blogspot.com

2010-02-24T15:52:00.000-08:00

These two pictures show how Isaac feels since Lucy arrived - Picture 1: Why is she still here? Picture Two: She stole my bed. Now I have to sleep with the kitties. :) In reality he's still as spoiled as ever, but he'd like us to think he's terribly neglected because of this new Lucy creature.

side note: New PT tomorrow! Excited. and a little scared . . .