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Elisa - you can now post all your info on Cookie and answer questions here.

awww thanks! im glad cookie has a sticky

she has her pedi apt tomorrow and its SHOT day well see how her weight is.

for All you late feb mommas/early march mommas (babies around the same week/age) what does your LO weigh? what % is it?

last we checked cookie was in conflicting %s... the hospital said 15% at 10.5lbs but then 2 days later CHLA (childrens hospital) said she was 5% at 10lbs :dunno:

thats when we put her on her every 4 hours feed at 27 calories/oz. so well see how well its helped

I hope her weight is up E.
Kat gets shots on monday... i'll let you know her weight and stuff when i find out.

Are you sure you want to know Quin's percentile and weight? I almost hate posting that on here because I know the struggles you will always have with Cookie.

On June 25, his 4 month birthday, he was at 19lbs 8.9oz. He was 27.25 inches long. His height, weight and head circumference were all in the 97th percentile, which is the highest the chart goes. This was the first time his head was that big, usually it is in the 50th percentile, but it must have caught up with the rest of him now.

cjschwer wrote:Are you sure you want to know Quin's percentile and weight? I almost hate posting that on here because I know the struggles you will always have with Cookie.

On June 25, his 4 month birthday, he was at 19lbs 8.9oz. He was 27.25 inches long. His height, weight and head circumference were all in the 97th percentile, which is the highest the chart goes. This was the first time his head was that big, usually it is in the 50th percentile, but it must have caught up with the rest of him now.

what are you feeding that boy, steak and potatoes?! sheesh! lol

i dont mind, thats a great healthy baby you have and im very happy for you! im feeling good about cookies weight. her height has always been good. (in the 50% consistantly) but i put her in 3-6mo pj's last night and she fit them well and shes wearing a 6mo outfit today! and it fits well! that means alot to me that shes fitting clothes on schedule now.

D was 12 lb 2 oz at his 4 month checkup and 26". That put him at the 85% for length and 3rd% for weight (below the charts for weight for height percentile).
He's still in size 1 diapers and mostly 0-3 month clothes (except he's too long for 0-3 month sleepers). The dr isn't concerned at all!!!!

I wouldn't be upset if Gwen is still small...I know you have to be concerned about her getting enough and not losing, but as long as she stays on the same curve then she's fine. Nothing wrong with having a small baby!

brett has his 4month appt on the 17th so i'll check back then. we had him weighed at 15 weeks and brett was 16lbs 1oz

punkybrewster wrote:D was 12 lb 2 oz at his 4 month checkup and 26". That put him at the 85% for length and 3rd% for weight (below the charts for weight for height percentile).
He's still in size 1 diapers and mostly 0-3 month clothes (except he's too long for 0-3 month sleepers). The dr isn't concerned at all!!!!

I wouldn't be upset if Gwen is still small...I know you have to be concerned about her getting enough and not losing, but as long as she stays on the same curve then she's fine. Nothing wrong with having a small baby!

oh im not worried about her being small (small/petite is fine) but as far as CF goes, poor weight = bad lungs.

the Dr said that if shes malnourished (under weight) then her lungs (and the rest of her body) wont be at top function and when your lungs are not working at their best then getting a cold with CF can be deadly.

the gene mutation that she has, is the "classic" cf gene and it causes the classic sxs. and ther reason that gene mutation is known for such bad lung problems is because that gene is notorious for digestive issues and the less she weighs the more likely she will develope terrible lung health (which is what kills people with cf) kwim?

I thought the weight was a side effect thing, didn't realize it could also cause problems. What little I know of cf are from my ex and his bro - they both have it (but there other bro does not).

every gene (there are 1500) has different sxs. some of the rarer genes hardly cause any issues at all (called "mild" cf) but the most common gene (DF508) makes up 90% of all cf cases. although its considered to be the "worst" gene to have the good thing about it is that its the most common and will be the first gene to be cured.

cookie has DDF508 which means she has "double delta F508" she has the same gene twice from me and dh. you could have DF508 + r234ds (made up gene name) so it could be any mixture of the genes depending on what the parents carry. so although its bad that she has a double copy of the worst gene its good that shell be the best candidate for a cure.

cam was born early on feb 19th. on the 23rd of may(for his 4 month checkup and shots) he weighed 14lbs 4oz. he is in the 50% tile, but she keeps saying he's underweight by a lb bc of that surgery.

i think cookie is doing well though!

fuel1316 wrote:every gene (there are 1500) has different sxs. some of the rarer genes hardly cause any issues at all (called "mild" cf) but the most common gene (DF508) makes up 90% of all cf cases. although its considered to be the "worst" gene to have the good thing about it is that its the most common and will be the first gene to be cured.

cookie has DDF508 which means she has "double delta F508" she has the same gene twice from me and dh. you could have DF508 + r234ds (made up gene name) so it could be any mixture of the genes depending on what the parents carry. so although its bad that she has a double copy of the worst gene its good that shell be the best candidate for a cure.

That sucks that she has 2 of the VF genes- but great news about the cure!!! So what have they come up with so far for CF? Are they close to finding a cure? I wish I was paying more attention- I don't know why this sticky doesn't turn yellow. Kinda strange.

every person with cf has 2 gene copies. if a baby is born with 1 cf gene then they are only a carrier (like me & dh, and do not exhibit any sxs) and there is talk around the CF community (dont know HOW true it is but its rummored) that we could have a CF cure in 10 years now that the stem cell ban was over turned. there is a pill that is in phase 2 trials that you take daily and its from what i understand, your taking a replica healthy gene and it over runs your bad CF gene for like 1 day so your basicaly replacing your bad gene for a good one (in pill form) every day. it sounds promising. i think its been proven to work for 1 month and now the phase 2 trials are testing it for longer than 1 month.

OMG that is awesome news! I'm so glad that the stem cell ban was overturned- seems like a lot of good could come out of that. So what's the deal with tah pill- how long will it take for phase 2 to work out?

im not exactly sure... i think it has phase 3 trials to do before it hits markerting. my guess is a couple years.

Thursday August 21 2008

Cystic fibrosis sufferers produce a thick, sticky mucus that clogs their lungs and digestive systems
“Drug hope for cystic fibrosis sufferers” is the headline in The Daily Telegraph. The newspaper reports that a new study of a drug, known as PTC124, “bypasses a genetic defect that causes breathing problems [in cystic fibrosis sufferers], leading to a reduction of symptoms”.

Researchers say the therapy has few side effects and represents an example of personalised medicine, where a drug has been developed to target the actions of a specific gene defect identified in a group of cystic fibrosis patients by gene sequencing. This was a small phase 2 trial, which did not look at long-term clinical outcomes. The findings are significant, though larger, longer trials are needed before its approval for use by regulators. We can expect more of these types of study as genomic research, the drug development based on it and genetic sequencing in diseased groups become more established.

http://www.vpharm.com/current-projects.html

one of them now are in phase 3

randomly cookie will spit up a small amount of clear liquid (like she had a mouth full of water and just spit it out) and there isnt anything in the liquid just completly clear water liquid. does your baby do this?

nope! it's usually milky

Could it be drool?? Jackson is very drooly right now. Maybe she is holding it in her mouth and spitting it out at once?

But otherwise, no his spit-up is just milky.

Yep! It's just saliva! David drools an insane amount and swallows a lot of it and will sometimes spit it up.

Maisie is my spit up queen. i swear, all the friggin time. We get milky. chunky. drool with a few lumps and clear (which I think it massive drool that just spews over)