Posted By Posting
Jul 10, 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
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Quinn Is Doing Great!!!
Of course, spirit wise, anyways! The croup is fine now. There was never a fever... The barking cough is coming and going and of course she is wheezing. But, that is beside the point. It is definitely much worse in her sleep. I can't tell if it is really croup or her airways acting up if you KWIM? Sometimes, she has a barking cough in her sleep and then it goes away in the day... this time it just stuck around a little longer and was during the day a bit. So it's something I will discuss with the pulmonologist on Monday. Hopefully they will be willing to help me out and not give me that "she is looking so healthy so there can't be anything wrong with her." I was even able to take a picture of her lips all blue and get video of her chest retracting in her sleep. The quality on my camera phone really sucks, but hopefully they will take that into consideration. Yesterday, I was struck with a 24hr bug. It was terrible, could barely lift my head off the couch, my head hurt and I was puking like crazy. Every time I puked, I had a terrible asthma attack and had to use my rescue inhaler. Once, i almost called 911. it was really scary. And I had to take care of Quinn too. UGH!!! I don't know how Quinn lives her days like that. you gotta think that she feels some of what I felt yesterday all the time and if that's the case, I don't know how she runs around like there is not a thing wrong with her. Crazy girl!!! Her g-tube site is red and inflamed again too and a bit painful. She is supposed to get it changed out soon. But a good thing is that she has been walking most days without her leg brace on and has not taken nearly as many falls! Of course she is still clumsy and is pretty much like a drunken sailor, but I am just amazed at how far she has come with her walking and her tone. She actually has strength and muscles!!! It's really, really awesome! And her speech, I can practically carry on a conversation with her. She repeats everything i say. If i tell her to say "Meemaw wants to go outside" she says "Meemaw, side!" So stinkin cute!!!! She knows the color blue... not just the word but the real color. When she tries to count she goes "two, fwee, foua, fife, sis, seben!!!" So cute!!!! She always forgets the one. Her voice is so cute, small and raspy. My mom and my whole family (all 30-something of them) finally convinced me to put her into baby modeling only locally since she has somehow developed a love for the camera. She has been doing well at posing. The only thing is the flash. she doesn't like the flash and I don't know if it causes seizures or not. i don't know how they would feel about her g-tube either. But she is really, really cute! i always have people stop me in the stores and comment on her beauty. I suppose we can try it out and see how it goes. My sister had her baby and he was 10 pounds!!! I don't know how my sister did it. I watched and it was really traumatizing for me! She had an epidural and was still in a lot of pain! But he is really healthy from what we can tell. Ummm.... anymore news... Oh yea, I have been having a terrible time getting Quinn in bed. I actually gave up the battle about a month or two ago, It was just a battle I was not willing to fight so i decided to have her start sleeping with me. idon't mind that at all, the only problem is that she has been staying up until midnight or later!!! She still sleeps her 12+ hours, but that means that she is waking up at noon or later too. Now, I'm going to admit, I do not want to wake her up early because for one, she's a cranky butt when she doesn't have her sleep, and for two, who do you think is up with her until midnight? ME! I want my sleep and hour or two of peace and quiet. But that is our only problem right now. Hopefully it is just a phase. Sorry this turned out to be so long. :) -Sarah
Jul 10, 2008
amber f
I am so glad to hear so she is doing so good spirit wise. She is a beauty and would probably do good modeling. I love when they start talking. It is so cute to hear how they hear what we are saying and repeat it. The counting sounds so much like the other kiddos here. It seems almost all kids miss one number when they are counting. I wonder why. Maybe it is too much for them to process so they don't hear them all? Who knows but it so cute to listen to them. Thank you for updating. Whenever my dh is gone I let my kids sleep with me. I don't think there is any harm in doing that:) Extra cuddle time. I hope her breathing gets better and the pulm. can help you. Thinking of you and Quinn always;)
Jul 10, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
So glad that she is doing great!!! Hope that you feel better today!
Jul 10, 2008
mdbarbagallo
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.... :(
Ughhh...I hope you are feeling better. Getting sick when you have a child id soooo much worse than when its just you, isn't it?????????????????? Thanks for the update about little Quinn. This sounds super cheesy, but what a little ray of sunshine.
Check with your
doctor first!