They also noticed an enzyme deficiency through some blood screenings. Luckily it isn't too complicated and can be treated by medicine. Kaelyn will have to take the medicine daily for the 1st year and then be re-evaluated and probably have to take it once a week after that. Kind of a bummer, but still, we are happy that they noticed it this early and that it can be treated so easily. Just in case you want to know it is called biotinidase deficiency.
Apart from those couple of things she has been doing very well. She is definitely still showing us who runs the show. Yesterday we were changing her diaper and it only took us 5 diapers to get it right. The first four times we went to close her diaper she would poop all over the fresh one. Luckily we had a diaper there to catch it. I decided that since it was my birthday she was just playing pranks on me.
Pranks aside, she gave me a pretty good gift. Apparently, she was so sick of her feeding tube that she just yanked it all the way out. So, we had the pleasure of holding and seeing her without it in for the first time. She is adorable. With every tube/wire that gets removed we get to see just that much more of her and just how beautiful she is.
Tonight we were able to help with bath time for the first time. Okay, so it isn't really a bath, more like a sponge wipe down, but it sure gets her clean. She was a good sport and didn't seem to mind it too much. Now for some pictures.
Our little UTE fan
She has really perfected her bubble blowing skills
Daddy's Favorite...His little Gangsta
Check out that pose
Her after bath pose
Ahh it feels so good to have that tube out
Her feeding tube-less pucker
24 comments:
Just beautiful!! I am glad that she is continuing to do so well.
What a beautiful baby!! You are going to have you hands full when she gets older. Thanks for the update, I was staring to worry.
Give you lots of love and keep up the good work!!
Such a little beauty. Good to see she's gaining weight.
What a doll! Makes me baby hungry... I am so glad she is doing so well! I pray for you all frequently and will continue to do so.
I just have to say congratulations again! We are so happy for you and I am so glad to hear that everything continues to get better. P.S. I just have to say that I really love the first picture you are teaching her right. :)
She looks so good. I love the pink Ute hat. Daddy would like that.
Oh how sweet. I love that she pulled her tube out. Thanks for the update we have been thinking about you.
Keep fighting Feisty Kaelyn! I'm sure you can't wait for the day when you see her complete tube & wire free :>)
Glad she's gaining some good weight now!
I was getting a bit concerned too. I'm so happy you updated.
What a precious little one. She is just so sweet.
Great update.She continues to amaze and astound.But then again I never doubted that she would!She is finding her way and beautifully at that.
Glad to hear she is doing great! Thanks for the update. I love to hear how well she is doing and what a great fighter. Jeana I have some books for you and Wayne to read to Kaelyn. Give me a call and I can get them too you so you can start to read them to her.
Valerie (801) 698-6646
I am glad to hear she is doing so well! I love the pics!
So happy to hear she is gaining weight and doins so well..what a little blessing...
She looks amazing, keep up the good work Kaelyn! And Happy belated Birthday!
I'm such a dork, I totally forgot that you are so close to us. We definitly need to make a blankie for Kaelyn. Then I will get to hand deliver another one, is there any colors you like for her or anything else, like butterflies or a nickname you call her so I can get some ideas of the blankie to make.
What a beautiful girl. I love to read your posts and remember going through similar things with Lyndie, (fortifying feeds, pulling out feeding tubes, first baths). You have one special girl and I am glad things are going well.
She is too precious. Thanks you for sharing her with the blog world. I have read several very inspiring blogs of heart babies and preemie babies that you might be interested in.
Two very inspiring stories with heart babies.
http://www.mycharmingkids.net/
http://www.youandmeplusthree.com/
Two very inspiring stories about micro preemies.
http://massingalefamily.blogspot.com/
http://morgankatherine.blogspot.com/
Good luck and congratulations on baby Kaelyn.
She is simply precious.
Thank you for stopping by.
I'll be deeply praying for you all. Especially for your peace and God's unimaginable healing on your baby girl.
If she's half the fighter that her dad is a basketball player, she's in good shape. Congrats on the kiddo, let us know if there's anything we can do to help. You know, outside of babysitting and all that stuff.
So happy to hear she is putting on some weight! Thanks for the great update. I'm always anxious to hear how your little cutie is doing.
Jeana, I have a book I want to give you. I am at the U of U hospital and am planning on dropping it off at the pcmc nicu tomorrow when the baby and I get discharged. I will just leave it at the front desk with your name on it, so be sure to ask your nurse if you dont see it.
Jeana,
I am a fellow blogger that found you through another blog. First off, I would like to say congratulations on your new baby girl!! I also want to thank you for blogging your journey with all of us.
Your family holds a special spot in my heart. I have a daughter with DS AND I am an NICU nurse. I get the very special privlage to care for babies like Kaelyn in my professional life and I get honor to care for a baby with DS in my personal life!
I would love to do a blog entry on my blog featuring your family, with your permission, of course. Please email me at tracyvelander@yahoo.com to grant permission.
While it's a tough road for your family, know that the medical world now is truly amazing and will provide the best care for Kailyn.
{{Prayers and Hugs}}
Tracy
It's me again! I welcome you to blog on over to http://shipleytwins.blogspot.com/. This is a family that had twins, one with DS (Like me!) but were born at 28 weeks. While she hasn't blogged about their NICU experience, it reflects how Kaelyn's life will be in the future. I guess I don't know how many weeks Kaelyn was born at but...
You have had a beautiful little baby! Congratulations on your new addition. We wish you three the best of luck and look forward to reading the updates. You are an amazing set of parents and we know that you will have the strength to endure everything that comes your way. We hope that you receive the best health care that Primary Children's has to offer.
I can totally see the family resemblance! Glad to see she's gaining weight!
Post a Comment