Ayla's first time out...
Today Ayla had her first pediatrician visit! It went really well!! She weighs 7 lbs. 8 oz. and is 20 inches long. The nurse was pretty sure it was 20 instead of the 19.5 like they said in the hospital. The lady in the hospital was kinda new or something, and I had a feeling she was longer.
The doctor said that we should hear the CF test results by the end of the week. I will let you know as soon as we find out. Hopefully it's good news and we aren't rushing to the CF Clinic. She didn't seem to suspect any CF at this time, but it is still a little too soon to tell. I told her that I have been keeping track of everything to see if there are any signs of CF. I also told her that if I suspect CF, I would start giving her half a capsule of enzymes with applesauce before some of her bottle feedings. If I really suspect it, then I'll do it before every feeding. She was fine with that. I told her how I had talked to the CF clinic beforehand, and they said that the enzymes won't hurt her if she doesn't end up having CF. I say it's better to be safe than sorry.
I took this pic with my phone and text messaged it to my sister D , my husband, and my friend Christi while we were waiting for the doctor to come in. She is all naked wrapped up in a thick warm blanket. My sister D said that it looks like an Anne Gedes picture:) Maybe I should send it in and she could be on a calendar or something;)
The doctor also said that she didn't see any signs of jaundice at all! So that is GREAT news!! She wasn't the one that checked her out at the hospital, b/c she was away at a conference near San Diego. Actually she said that she was thinking of us when she was away! She was walking on some boardwalk shopping in some of the shops, when she came across a Surf Shop. She was buying something for her daughters and got to talking to the owner of the shop. Somehow they started talking about a book that she is writing to help raise awareness for CF! Instantly she thought of us she said. She took her card and said she would give the info to me and her other CF patients and to the CF clinic here. She made me a copy of the card and gave me her web site. If you want to check it out, it is http://www.surfangelbook.com/.
The book will be out next month. It talks about the owners daughter(I think) who is in her 20's and has CF. It gets awareness out about CF and how the salty air there helps her to breath so much easier. Then I told her about the salt air purifier that I found on line and it is supposed to really help CFers. And I told her about a blog that I read and how Michael is 24 and got one of these salt air purifiers and explained how much it has helped him to breath easier. (Click here to see how it has helped Michael.) The doctor asked if there was a way we could add saline to a nebulizor. She thinks that it could be done. I told her I would ask the CF clinic. Does anybody know if this is possible???
As she was finishing checking Ayla out, she said to Ayla..."We're going to get that book for you and your brother, Lil' Chris." She is the sweetest doctor EVER. She was telling me that she admires me. She admires how well I take in all the CF stuff. At the end of the visit, she even asked if she could give me a hug. She is so sweet and has a great heart :)
She said that Ayla looks GREAT!! She just wants to do another weight check on Monday 2/9 to see how her weight is and to see if there are any signs of CF, if we don't get the results before then. She said if I suspect a huge weight loss, then I can schedule a weight check sooner if I want.
Home again...
Overall, it was a great visit:) I hope all will be like that for Ayla=)
M
PS. I will post the winners later...I haven't forgotten;)
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9 comments:
Ayla look so cute-and such positive news so far!
This is so cool that the dr met a CF mom! Any idea which store in San Diego? I would love to check it out. The website for the book looks great.
Awww she looks so cute all wrapped up. Glad to hear things are looking good so far.
She looks so pretty.
As far as the saline in the neb, I do that all the time with Carson when he is really gunky in his chest. I bought a box of 100 vials at CVS for under $20.00 and just put one vial in at a time when needed.
Sending prayers your way that she is negative on CF.
Kaci
Thanks Kaci for letting me know about the saline in the neb. I'll have to keep that in mind when he eventually gets put on a neb.
Alicia, the store is called Ocean Girl. It is in La Jolla, CA.
Thanks everybody for all your comments lately:) They have all meant so much to me. I'll eventually get all caught up on all the questions and on reading everyones blogs;)
M
Glad to hear that you are home and Ayla's first dr. appointment went well! She is SOOOO beautiful! Still praying for no CF! Take care and try to get some rest!!
She is precious! And she looks so cute in her little snowsuit! The weather here doesn't get nearly as cold as in your area, but I found the best thing ever when Reilly was in an infant seat. I actually give it as baby gifts now for my friends who have winter baies. It is called a bundle me, and it is a zip around shearling "blanket", so that you don't have to bundle baby up so much. It is nice and warm, and was a lifesaver for me! You can check one out here...
http://www.target.com/Bundle-Me-Bunting-Pink-0%E2%80%9312/dp/B0000D14PW/sr=1-2/qid=1233688751/ref=sr_1_2/183-5401257-2505836?ie=UTF8&index=target&rh=k%3Abundle%20me&page=1
M, Ayla is beautiful and more - just like lil Chris and I pray she does not have CF - and we also always and still do use saline in the nebs - even when my chest gets all wheezy (I have my own neb). Carmen uses two different ones and is here at the moment - although the weather is rain rain rain we hoping for some sunshine before she goes home to London next week. Hugs to whole family. Charm
Hey M, Ayla is sooo beautiful!!
I wanted to add a comment about the saline. Regular saline is 0.9% (or 0.09%) salt water. They started Janna on a 3.0% then up to 5.4% and now a 7.0% 'hypertonic' saline solution nebulizer treatment. The 7% solution comes in little 4ml vials that your doctor can write a prescription for. If you get a taste of it, it's like getting salty ocean water in your mouth. Janna takes 2 twenty minute nebulizer treatments of this 7%hypertonic saline solution each day. It's been great and she's doing great with it. I'd be interested in knowing if any of your other friends are using it too. I think it's great and I think others should know about it too.
Alicia,
I saw a huge poster for the book "SurfAngelBook" in the window of Ocean Girl Surf Shop and Surf School in La Jolla Shores CA. I think the street is Avenida de la Playa. Australian CF researchers have shown that kids who surf have a decrease in the severity of symptoms....because of the obvious proximity to salt laden air.
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