Friday, December 11, 2009

Our Busy Week

We have had a busy few days full of appointments.  Last friday, Kylee had her last cardiology appointment before her surgery.  Since she is doing good, the dr. didn't feel the need to have her come back.  Her o2 sats were at 87% and she weighed 13lb 10oz.  We had the surgery rescheduled and it will now be the 13th instead of the 11th.  The surgeon does not want her to have tubes put in her ears until after her heart surgery.   She had an appointment yesterday to receive her shot to protect against Respiratory Syncytial Virus, which she hated.  She passed the 14lb mark at 14lb 2oz.  The pediatrician mentioned that at her 6month appt next week she will have her thyroid tested, which is standard procedure for kids with down syndrome, but she also has a low body temperature which can be a sign of thyroid problems.  Her temp. yesterday was 95.9.  She also had her 3 therapy appts, which are nothing different.

Kate had her speech therapy appt and is doing so well that she will probably only have 2 more sessions.  She flipped out at the dentist, which they only were cleaning her teeth, but they first tried the electric toothbrush which was quiet, but for some reason she was scared of it.  Lastly, she went to see the ear, nose, and throat specialist because she is always sick with cold like symptoms.  For the next 6 weeks she will take an antibiotic and then they switched her allergy meds, but more than likely after Kylee's surgery, she will have her tonsils and adenoids removed.

Yesterday, we took Kate to Chuckee Cheese to go play with her friend from school, Joseph.  Those 2 together are soo cute!  They are always hugging each other at school and get so excited to see each other.  When we were there another little girl and asked Joseph if he wanted to play.  They went up in the tubes and Kate loudly said, "she stole my boyfriend!  I'm coming Joseph!"  For 5 hours they ran around and played games, ate pizza and ice cream, held hands.  We also had fun getting to know Joseph's mom, Mandi.  They actually live less than a minute down the road from us. 

Kate's reading skills have really taken off.  She can recognize a ton of words, but she also can sound out alot of words as well.  Somehow she was able to sound out down syndrome today.  She amazes me!  She is really looking forward to christmas as well as Phil & I.  Next week is our last week of all appointments until Kylee's surgery.  We don't to take any chances with her getting sick especially right before surgery for 2 reasons.  First, if she gets sick before her surgery, they may have to postpone it and their schedule is pretty busy and we wouldn't be able to get her in until Feb, unless of course she started having problems.  Second, if she gets sick, it can really pose risks for complications with and after surgery.  Being in the hospital for 2-3 weeks is long enough, I don't know how others manage with longer hospital stays.  One mom, Joye, her little boy Ethan was in the hospital for 9 weeks.  Kate is also looking forward to Uncle Mike coming. The other day when we asked her about going to see the person who brings presents at christmas, she said, "Uncle Mike!"




4 comments:

  1. You are a beautiful girl Kylee! And doing so well with gaining weight. Janna and I continue to pray for your upcoming surgery. Hope that you and your family have a very Merry Christmas! aj & Janna

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  2. Well, Kate is certainly putting me on the spot. I have to come bearing gifts now or she will ban me from Christmas. I guess I should come with more than just socks and undies. Looking forward to it.

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  3. As a father of twoi boys with Down syndrome, I can relate to all of the health concerns. Best wishes for your family.

    Life with a child who has Down syndrome is the best.

    6 months after Josh was born with Down syndrome, I attended my first parent group. I was touched by the struggle people were having with “why?” I went to bed with a heavy heart and awoke with this story. I hope you enjoy it.

    http://tinyurl.com/secretjourney

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  4. I stumbled across your blog from Adventures of a Funky heart and found we have a lot in common.

    My son is 8 months old and was born with Trisomy 21 and TOF Pulmonary Stenosis. He spent the first month of his life at Duke and had heart surgery for shunt placement when he was 7-days old. He recently had open-heart surgery November 5th to repair the TOF and has been doing well.

    Just wanted to tell you that I know how you must feel and what you have been through.

    www.caringbridge.org/visit/bobbymelton

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