Well, last Monday we were just starting down this path. We are still just at the beginning of a long and certainly winding road but we have reached the first milestone. We are home, all of us. Kaya was discharged from the hospital this morning. Her appetite can only be described as ravenous. We are all so happy to have our little family intact and at home. Again we thank you all for your kind thoughts, words and prayers. It's been a rough week and we have a long way to travel yet. Within the coming month we have appointments with the Pediatric Surgeon from Primary's to look at the eventration in her diaphragm. We have an appointment to see the Pediatric Cardiologist to look at the ASD in her heart, We have to go see the Audiologist for her hearing loss in her right ear. Next is the big kick in the goners. The geneticist at UVRMC had a good look at her over the last two days. I think she was looking for an explanation for all of Kaya's problems and she found a hook to hang them on. The Dr. thinks she has several "Markers" for a rare but serious Genetic Syndrome (not Downs but with similar implications) She was basically looking at Kaya's entire body, face and her internal problems and piecing them together until she found a possible diagnosis. They took a blood draw this morning and it will be sent to the University of Chicago, one of only six places in the world that do this testing. The test results won't be back for 2 months so we get to worry. Even then the test will only show a positive if she has it but if the test is negative it still doesn't rule out the problem. The test misses the gene 50% of the time. So basically if it comes back negative we still get to worry our brains out for a few years while we watch her develop. IF she has it, it's a very mild case but even the mild cases seem to have very serious problems, so we wait and we pray and while we have her here, at home she is our beautiful little girl and we will cherish every moment. Your continued prayers and thoughts are very appreciated as we move along what may prove to be a VERY long road.
Dressed for the ride home.
Her eyes are all red and puffy again due to having an eye exam this morning where they clamped her eyes open and poured fluid in them.
Moose gets to hold her for the first time.
He's a defender of his little Sister. On Saturday Tiff was rubbing her feet and she started to squawk and Max piped up "Leave her ALONE mom!!"
She's in good hands
Dressed for the ride home.Her eyes are all red and puffy again due to having an eye exam this morning where they clamped her eyes open and poured fluid in them.
Moose gets to hold her for the first time.He's a defender of his little Sister. On Saturday Tiff was rubbing her feet and she started to squawk and Max piped up "Leave her ALONE mom!!"
She's in good hands
10 comments:
we just want you guys to know that we have been thinking about you and praying for you! We have been getting updates daily from janine! Love you guys, hang in there! we are happy she is home!
Newty
We are thinking about you guys, hoping all is well. It is never fun and very frustrating when you have no control over the situation. Hang in there and tell Tiff and the boys hello for us.
And the tears come again! This has been a long week! But your lil family has fought as well as Kaya! Just think of how far she has come scince last week! She has,like I said yesterday Humbled me in which I am so grateful! she is so beautiful.!! Try not to worry (which is hard I know, I got the worry gene, I think ive inherited an ulcer)! I am SO happy that she is home! Remember it is out of our hands, and the lord never ceases to amaze any of us with miracles! I can't wait to hold her! Plan on dinner from me tommorrow! 5:30 Sharp! She looks like moose alittle bit in that picture! Lv you guys Hugs Mich
yeah..... oh my goodness i am so excited that she is home with her family!!! And wow, look at that proud big brother! Max sure will take great care of Kaya! We are still prayer for her! I love you all and wish so much that I could hold and love on her in person! I guess I will just have to do that through pics!
Wow! She must be doing well to be discharged this soon when you though it could be weeks. So glad you're all together at home.
One day at a time Newtys, one day at a time. Its good to see she is home.
I'm so happy she is home, she is beautiful!
She is just gorgeous! Thanks for letting me take the boys. They had a good time, I think. Sorry if Max is tired. I couldn't get him and Ash to get to bed. Please, let me know what I can do for you guys. If you just need another break, I'm just up the road. Food...I'm your gal.
Kaya is in great hands. She is surrounded by those that love her unconditionally. You have tremendous support all around. The prayers will not cease.
Love you guys!
Paul and Tiff- Keith has been keeping me updated as I am here in Canada. What a beautiful girl you have! I love all her hair- big surprise being a newty. What a lucky gal to come to such loving, loyal, fun family. I can't wait for the day your family goes boating. I bet none of the boys will be able to tell you anything about their runs but you will all know exactly how kaya ran every rapid.
I wish you all the best and that you will feel peace during the coming weeks as you continue testing. I will certainly be praying for you all. I can't wait to meet her!
She's so sweet and the boys look so excited. You and Tiff seem to be handling it all so well. We wish you all the best, and send love and prayers from Moab.
Post a Comment