Wednesday, September 26, 2007
For my LONG time blog readers, Jenny is Ethyn's mom. Ethyn was Kaitlyn's "twin" in the NICU. Ethyn lost his twin just as Kaitlyn lost her twin. Jenny and I enjoyed calling each others babies their twin. Ethyn was a very sick little guy (born at 24 weeks) and is doing really well now, but he has eating issues and is developmentally delayed (like Katilyn). Ethyn was in the NICU for over 5 months, and came home the day after Katilyn did. The NICU let us choose our NICU isolettes so we could be next to one antoher, as we both spent a LOT of time at the NICU for those many long months.
Great news! Jenny just had a beautiful baby girl, Mychelle. Here is her note to me:
Things are going wonderfully on the homefront. Mychelle is an awesome sleeping, eating, pooping machine. I have to tell you it's just so wonderful to be able to breastfeed her. I was pretty stressed initially because I couldn't tell how much she was taking in or if she was gaining weight (typical preemie mom fears about weight gain), but after her one week appointment where we found out that she was actually above her birth weight I was able to just go with the flow.
Having a full-term baby, which I consider Mychelle to be even though she is technically a preemie, is just so, so, so much easier. Sure I'm sleep deprived because I'm nursing Mychelle on demand which is typically every hour and a half, but I love the fact that she's actually demanding food. And sleep deprivation due to nursing is nothing compared to what we went through at the NICU or even afterwards.
Right now, Ethyn is still the challenge given his feeding (which is better) and his schedule.
Oh Liz, I want so much for you to experience the joys of having a full term baby. We definitely don't love our babies less, but we did miss out on the typical motherhood experience.
Tuesday, September 25, 2007
Forwarded to me today: What do YOU think?
September 25, 2007
America, Meet Our Unvaccinated Kids, Version 2.0
Jb_handley_photoBy J.B. Handley
Back in June, we released what we felt was an astonishing data set for the first ever study comparing the rates of ADHD, autism, and asthma between vaccinated children and unvaccinated children. Our conclusion was weighty:
"We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys."
And, the mainstream media wouldn’t touch it.
Cynics will say this is because our survey was only a "phone survey"despite the fact that phone surveys are reported in the news every day, and despite the fact that the CDC uses a phone survey to establish the prevalence of…autism!!
As the Director of the CDC’s two phone surveys on autism noted: "the consistency of prevalence estimates across the two surveys supports high reliability or reproducibility of parental report of autism and reliability is one important component of validity."
Were we blacked out? Was our story too hot for the mainstream media to handle? Perhaps, we’ll never know for sure. That said, we got plenty of coverage and heard from places like UPI reporter Dan Olmsted, Daily Kos, and NewsMax.com, to name a few.
Fast forward to September, and the climate for listening to the parents has changed, perhaps permanently, thanks to Jenny McCarthy.
So, we ran our Ad again today, the one describing the survey results, but this time we ran it in USA Today.
With that as background, America please meet our unvaccinated kids: For the first time ever, we know something about them that may help our kids. Yup, they live right down the street from you, they are 5.6% of the population, and they have less asthma, less ADHD, and less autism than our kids seem to have. At least according to our survey.
Do we expect you to believe us? Not really. Not if you’re a member of the mainstream media or the mainstream medical establishment. But, we really hope you will look at our data. Because today, unlike the CDC, we are making all of our data public simultaneously with the release of our survey. Crunch away, and decide for yourself.
We followed a very straightforward process, so anyone can retrace our steps. We told a market research firm what we wanted to know. They designed a questionnaire they felt would get us an answer. We approved the questionnaire. They ran the survey and sent us the data, which you can now access. Decide for yourself.
Some of the numbers really jump out, particularly amongst the boys. A "Risk Ratio" is a way to compare prevalence, so that if 10% of vax kids and 5% of unvax kids have ADHD, the Risk Ratio is 2.0, or a 100% difference. Risk Ratios above 2.0 tend to be allowed in a court of law to show correlation.
We found many Risk Ratios well in excess of 2.0, and some higher than 4.0, the equivalent of a 300% difference.
Decide for yourself.
Have we proved anything today? Yes and no. We’ve proved that unvaccinated kids are easy to find, and that a straightforward survey yielded some disturbing results. What we haven’t done is design a study with enough scale and controls to be published in a first-tier, peer-reviewed journal.
But, we’ve certainly highlighted the screaming need for such a study to happen.
So, now what?
Everyone should send an email to Dan Olmsted and thank him for his Age of Autism series from UPI. He’s the one who asked about unvaccinated kids first, and asked it loudest. He even asked Julie Gerberding, CDC Director.
He just kept on asking it until we got so tired thinking about what an obvious question it was that we did something about it.
Our data should be scrutinized, analyzed, challenged, and debated by any and everyone in the autism community who cares to do so. (If you want a copy of the Excel spreadsheet with the primary data in it, email us and we will send it to you.)
Everyone and their grandmother needs to cajole their Congressperson to jump on the bandwagon and support Congresswoman Carolyn Maloney's bill to study unvaccinated children.
This incredibly brave Congresswoman from New York said in a press release in June: "What is ultimately needed to resolve this issue one way or the other is a comprehensive national study comparing outcomes between vaccinated and unvaccinated children. As the most scientifically advanced country in the world, we should be jumping at the chance to conduct a comprehensive national study to resolve the questions that have been raised. Parents deserve answers, and children deserve no less than absolutely certainty and safety."
The autism community should pull together and fund our own independent study, in addition to the Maloney bill, to gather as much data as quickly as possible. Autism Speaks, with the biggest war chest, should take this opportunity to fund or lead the funding for such a study, and help put this issue to rest once and for all. It would be a great opportunity for them to repair a badly burned bridge with many of us, and I hope they jump at the chance. The study must be run by researchers who have no history in this fight, on either side of the argument, and it must have the scale and controls to achieve wide acceptance through journal publication.
As for me, nothing much changes. My son is getting better, and we think the road map drawn by considering him "vaccine injured" is why. Knowing cause is so incredibly important to figuring out how to help and treat our kids, and I’m grateful for the pioneers who have been demanding answers for years. My wife and I hope, in some small way, that this survey moves things forward, and creates a deafening demand from parents for more answers. Now.
Sunday, September 23, 2007
Sunday, September 09, 2007
Our feeding therapist has been here now 3 times (for the first session where we had incredible successes) but the last 2 sessions haven't gone as well. Kaitlyn did SO WELL with starting to feed (with purees) that I was just convinced that that we'd be done with the tube in a few more visits.
We've been working on chewing. Boy. This isn't easy. We had to teach Kaitlyn how to bite on a chew stick at every feed. We also had to put food onto Kaitlyn's back teeth, but she either vomited/gaged, or bit down on our finger HARD with her front teeth. Her bad behavior really kicked in then (I'd guess I would too if you put something in my mouth that made me vomit and gag) and refused to let us put the food in.
For 1.5 weeks it was horrible She was vomiting 4 times every chew session, and then would still often vomit with food. (We increased the volume of purees at each food). 5 times a day, Each feed was taking 5-10 minutes to prep the food (not counting the cooking/freezing of the food), 20-30 minutes for each session, cleaning up vomit. 5 times a day.
Dr Patel told us to stop and wait for the next visit. We did continue to work on the chew stick, and Kaitlyn's back teeth chewing did improve, but she obviously had no idea what to do when any type of food entered her mouth (besides purees).
Feeding therapy continued this last week. It was really tough. I started crying at one point. I was so frustrated by what was being asked of me, and the progress was so painfully slow. This new session didn't seem all that much different than the previous session, and now I'm back to waiting for another month for the next session.
Don't get me wrong. I'm sooo thankful for Dr Patel and still 100% believe in the program. But this is really, really hard. 2 months ago Kaitlyn wasn't eating ANYTHING orally, and she is now fed 80% by mouth. But moving on to chewing seems to be like climbing Everest. (fellow feeding disorder children's moms have emailed me saying that chewing was very hard for their children to over come also). It still doesn't make this easy.
My fellow blog mom/preemie friend Kim emailed me during this. and I let her know I was having a really horrible day. Here was her reply to me. I thought it so perfectly explained my feelings that I asked her if I could post it. When I received it the tears rolled down my cheek. Thank you Kim. And on top of that just yesterday Kim had sent me (even before this happened) a new lead-free bib to catch vomit! it's great. Thank you Kim - it's amazing how close you can become to someone you've never even met in person!...
5:00 oral feed - feed horrible pghlemgy vomit with her feed
7:00 oral feed- miracle of miracles no vomit
8:00 bed, crying
8:10 go in room, attach feeding tube –quiet her down, but still crying once I leave the room
-Continued lots of crying...Go in every 5 minutes or so to comfort (this is abnormal for K to cry when going to bed)
I started then just saying nighty-night at her door
-About 8:40 her crying hadn't let up - not normal - so I went in and was immediately assaulted by the smell of stomach acid
-Her tube had come open and emptied the contents of her stomach onto the bed - hence the crying. I felt terrible! (not the first time this has happened, but it’s horrible!)
-Cleaned bed, changed sheets, changed pj's Gave her 2 ounces of water via tube, as I'm sure she was starving
-Rocked her for a while (normally she hates this)
-Put her back in bed, lots of crying still
-Gave her 2 ounces of food via tube, held her again, and she proceeded to erupt and vomit all over me, her clothes, the chair I was sitting in the carpet…
-Take off my shirt, (I'm covered in vomit), use my shirt to wipe her up, as it's everywhere...change her pjs (again) and try once again to put her down.
-This time she curled right up and went to sleep
Now it's time to start tube feeding her for the next few hours….
Oh the life of being a micro preemie mom.Here's a few pictures from tonight:
Some vomit that I caught (in the puke bucket (K's old NICU bath-tub that we always keep handy), some that I didn't, all the vomit on me and Kaitlyn isn't in the picture and old vomit stains on the carpet (to think I was just about to clean the carpet again - why bother?)
Some more pictures for you:
Sunday, September 02, 2007
Well, you get the point, our luggage was enormous! Not at all like last year during this time when Brian and I flew on a MUNCH needed vacation to celebrate my 40th birthday and our 3rd anniversary in Dominican Republic - solo. We were very lucky that Kaitlyn stayed at the most wonderful place: The George Marks House in the East Bay (Northern California).. http://www.georgemark.org/
Anyways, we were off on our first Family Vacation to Lake Chautauqua in Western NY. This is an AMAZING Place that my in-laws have a 2nd home there. My mother in law worked feverishly all winter to expand the house so that her ever expanding family could all fit. Elissa (Brian's sister) and Mike (Elissas husband) planned it so that they would be there when we were. We were able to meet Cousin Stella for the first time. I'm actually an Aunt@ It's sad that we've never gotten to even meet my darling little Niece before she was 1 years old! Aunt Elissa came to visit her niece Kaitlyn 2 times (1 while we were still in the NICU and the other time we had just come home with Baby Kaitlyn finally).
We had a fabulous time on the trip, I hope you can tell by these pictures:
Kaitlyn decided the perfect time to nap was during the 45 minute ride in our car TO the airport. We couldn't wake her up, here she is sleeping in the parking lot while Brian went to get our car. Look how many bags we have! Goodness. Kaitlyn is OBSESSED with balloons...I mean really obsessed. If she sees one anywhere, she will follow that child and try to take his balloon, over and over. If we don't' find a balloon soon, we may well have other kids screaming. Luckily we found a ready balloon vendor nearby. This took place in the center guards of The Chautauqua Institution.
More pictures from the center of the Plaza. This is Brian and Elissa Tessier and their 2 daughters (cousins Kaitlyn and Stella). Kaitlyn is 6 months older than Stella, but they look very similar. Kaitlyn could do some things better than Stella and Stella could do some things better than Kaitlyn. It was a nice learning experience for the both of them. Kaitlyn hasn't been able to spend this much time with other kids. It was great! Look how much Brian and Elissa look alike...That's where I know Kaitlyn gets her looks - from her pappas side of the family.
Because she has a balloon, you are guaranteed lots of smiles! and her saying "baaalllloooo" very quietly, but she says it all right. When one balloon popped, she even started her 2 word sentences: "baba balllloooooo" Very very cute. You really have to listen hard to hear it, but it's just so sweet to hear her voice!
Some Family portraits (for the Holiday Christmas card). as it's unlikely that we would all be together again before the holidays.. From L to R: Brian, Kaitlyn, Liz , Markie (Margaret & Brian's mom),Ed (Brian's Dad), Elissa (Brian's sister) cousin Stella and Mike Tessier (Brian's Brother in law). I feel so lucky and blessed to have such an incredibly wonderful family. You always hear of just horror stories of in-laws. And I can more than honestly say I love my in-laws. They made our trip so amazing, welcoming. I feel very fortunate indeed. I just wish we lived closer!!!
A McCarthy Family Shot (with balloon of course)
We found matching outfits for the girls to take our family portrait shots...they were much more interested in causing havock back at home. Kaitlyn learned to Throw the fridge magnets across the room and started giggling when you told her to stop and pick them up. She never threw them before across the room, and she never defiantly did something you didn't' want her to do. Well there's some good here. Kaitlyn learned that behavior from Stella, and Stella learned from Kaitlyn how to put the letters back on the fridge. They were like little magnets themselves, learning so much from each other. It was really wonderful to experience.
Some more lessons, Kaitlyn knew how to Kiss (but not hug) and Stella knew how to hug and not kiss. Here they are working on practicing those new skills with each other.
The McCarthy Women! Kaitlyn, Liz, Markie, Elissa and Stella Tessier. Brian and I need to have a boy so the McCarthy name will carry on!
Another family shot, this one was taken in front of the Hall of Philosophy, one of the venues for lectures and is actually where Elissa and Mike were married just 2 short years ago (when I was pregnant and had just miscarried my triplet). It felt strange in some ways being back now, when I was here I didn't really leave feeling very well, I was so sad to have my miscarry happen during Elissa and Mike's wonderful celebration. I tried to suck it up best I could, but I was told I should stay in bed as much as possible...oh how I wish I knew then what was coming!
The Cousins causing mischief again!
Elissa had the great idea to let the girls do some finger painting....I think they had a lot of fun, but Kaitlyn (as always) is a little nervous around new things.Now they are starting to get the hang of this finger painting stuff! Painting Stellas Budda Belly!
we worked really hard to get this kiss on camera...only about 50 takes (thank god for digital cameras)
Kaitlyn's sensory issues flare up sometimes, (see above) but she did amazingly well with all of the new sensory overload...I was really pleased.
The girls looking at something very interesting in their boat, maybe dreaming of the next time they'll be there for the summer and they can be swimming about on their own!
Not an easy task to get them looking at the same place at the same time.
A little beach time play in the sand. Kaitlyn loves to dig up sand and put it in her bucket, over and over and over. It's great, I can actually sit on a towel for maybe, oh....5 minutes. (A reminder once again of how different life was before children). The beach was just a 5 minute walk from the home, so we were close by to go home to do the feeds every 2 hours.
Dad, Kaitlyn and I in front of some of the cottages of Chautauqua
Any ways, this town is the largest place for the Practice of Spirituality. It was nice to visit it. I became quite emotional over the loss of Corinne and how much I miss her.
We then went to a nice local "diner" where we some at least 2 mullets (I wanted to take a secret picture, but didnt' know how to go about doing that).
After that we drove into the Amish country and purchased some Jam. A woman there told me that she had a preemie that was born 2 months early and was in the NICU for 2 months. My husband was surprised that they would even use hospitals at all. With their Dutch accent and their clothes, it was so foreign to me, but very interesting to see.
This is a picture of a family loading up hay bales (that they had bailed by hand) onto their horse drawn buggy. You don't see that out here in California.
Always nice to throw in a happy girl!
And a kiss to dad, with Stella watching (and learning)
A little book time reading from Auntie Elissa....We all had such a nice time together. I wish everyone wasn't so far away. I'd love for Kaitlyn and Stella to be able to grow up closer.
Poor Mike (Stella's dad) was very jelous of Kaitlyn's hair. I once even asked him if he wanted to put in her pig tails, as he'd need the practice!
Kaitlyn has a nice soap mohalk! Look at all that hair Mike!
K and Stella having a great time together in the bath.
This was a nighly activity during one of the performances, just outside the Ampitheatre the toddlers were kept busy by teh grandparents, and we got to watch a bit of the s how. What a nice treat with toddlers.
In this picture, Kaitlyn is clearly saying, "now hurry up girls, you are pushing me too slowly!"
She is a very serious little car driver! It was craking me up!
Finally, on a little down hill she let go and smiled and had a ball (with a lot of hands and cheers coaching her on!) Every time the audience clapped for a performance, Kaitlyn would clap too and try to figoure out what she did! It was too cute.
Markie pushing Kaitlyn, while She and Ed swing Stella. They are on cloud 9 having both their Granddaughters there.
Trying out the boat.
Brian and his Neice, Cousin Stella, already a great Steelers Fan!
Kaitlyn is puckering up to give Stella a kiss in this picture
Stella, the line-backer, is preparing to give Kaitlyn a hug! (or bowl her over)
It was raining, and Kaitlyn decided she was ready to play and splash in the puddles. BOy did she have a blast!
Stella was a bit timid about the whole water thing, but caught right on from her Big Cousin Kaitlyn!
They were both soakng wet and had a blast!
OK, to end on a sad note, Kaitlyn didnt' want to go home! As you probalby know, Kaitlyn rarely gets upset. I dont' remember now what this was over, but she looks so pitifually sad. I thought it was a good "ByeBye" picture...I'll Miss Grandma (Mame) and Grandpa (Gille), Cousin Stella, Auntie Elissa and Uncle Mike! We all had a fabulous time and miss you all already.