Posted By Posting
Jul 17, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Quinn Update
With all that is going on, sometimes I forget to let you all know how well Q is doing. Her speech has been taking off! she says so many words, repeats so many words and is learning new possessive nouns. It is so cute to hear her try and say words. She says stuff like, "My do it!" "I YIKE IT" (I like it) "No want it", "ors" (yours) "mine". She asks me questions like : "eating, mommy?" "Sleeping, mommy?" "mommy tired?". She calls cuts "boo boos". she knows exactly who her new little cousin is. She calls him baby AJ, Baby Alex and Baby Hoser. The baby's name is Alejandro and his nick names are AJ and Alex. Hoser is his father's nick name for Jose. So it is really interesting to know how much she knows. She knows it's baby Alex but she also knows that it's little Hoser. And nobody told her that! Her favorite color is blue. She can identify that color and when it is mixed with other colors she is able to sort out the blue from other colors. That's the only one she can distinguish so far though. She can identify people in pictures. She had her six month re-evaluation with Inland Regional. She is still a little delayed in her physical milestones. Between a 24-26 month level (she is about 30 months) *that is scattered of course*but it is ok. Her speech is right at 30-32 months!!! It's hard to believe that not even a year ago, she was profoundly delayed and couldn't even say the word "mama". Her toileting however is at a six month level. we have been taking off her leg brace and she is been doing quite well so far. She still has her on and off days. like today was definitely an off day. She has a ton of muscle mass. You can even see it. She seems to be steadier on her feet too. She has been doing well with her oxygen at naptime, but nighttime is another issue. I had to tape it on her last night. When I took it off, it ripped her skin. Poor booger. I taped it back on tonight. We are getting some tendergrips soon though. It stays on her cheek, but has little flaps that hold the nasal cannula on her skin so I can take it on and off. I figure that we can at least do that until she is able to wear her oxygen all night without it coming off. Well, that's all folks!!! -Sarah
Jul 17, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
That is an amazing leap in the area of speech! And her physical development...our regional center here in the valley would discharge her because it is no longer a 30% delay! glad to hear some good news
Jul 17, 2008
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
YAY, thanks for the update! She is a doll!
Jul 17, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Boy, is your little one tough. I love reading these updates...especially when you seem to be pretty happy! That's great news about her speech and the leg brace. And I was terrified when I read about your haunted toilet. I probably would have doused it in holy water by now!
Jul 17, 2008
wonderful update! She is such a beautiful little girl!
Jul 17, 2008
amber f
I love when kids first start taking it is so sweet. I yike it sounds like a lot of the kids here:) I'm glad she is doing so well in lot of areas:)
Jul 17, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Yeah Quinn!! I love it when they really start communicating. She sounds like she's thriving, in spite of everything. Very good job, Sarah, you should be proud of your mommying.
Jul 17, 2008
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Great update!! I know you are so proud of are an awesome mom Sarah!!
Jul 17, 2008
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Yoo hoo! Go Quinn! Soooo glad to hear about her progress. Amazing what she manages with all her challenges to deal with too. Surprising that she has any time to learn to talk! Good for her.
Jul 17, 2008
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Yippee skippee!
Check with your
doctor first!