There has been a glitch in my plan.
I feel like raising a special needs child is like running in a race. You give it all you have, you think positively because you know you will perform better if you do and you pace yourself. You pace yourself because you know you need to make it to the end. We have been so lucky with AnnaKate regarding her health. She has had set backs but in the grand scheme of RTS she is really healthy. I have handled and done a lot of things that I thought I would never be able to do and I have tried to remain positive. I stay the course and our life is blessed, good...and somedays even easy.
Yesterday we returned to the sleep doctor to discuss another sleep study to see if AnnaKate's sleep apnea has cleared. In my mind, I thought she was doing great until I spoke with the doctor and he pieced some of my comments together...slight snoring, constant yawning, unhappy in the morning, etc. He explained that AnnaKate's apnea was so extreme that the tonsillectomy last fall probably helped but by no means fixed her apnea. He said a 50 percent increase could look dramatic to us but she still could have severe apnea. I felt like the rug was pulled out from under me. I had not planned for this. I don't like change and this has changed things for us. Most days I can handle being a mom to a special needs child but yesterday I felt like I was losing the race.
So today, I am creating my new plan and preparing for a sleep study in the next couple of weeks. If apnea is still an issue (for the record, I am now convinced it is and Billy is convinced it is not) a CPAP machine could be in our future. People talk about how horrible this would be for a toddler and how hard it is to train them to sleep with this on. But, I look at all my strong friends who have handled, feeding tubes, Leukemia, multiple surgeries, breast cancer, infertility issues and the loss of a spouse and I think....a CPAP machine is cake. I can do this. So after a little glitch yesterday, I am back on track.
Billy and I married in 1998 after dating for 6 years. In 2006 we adopted AnnaKate. We were lucky enough to meet her birth mother and take her home from the hospital. At about 4 months old, AnnaKate was diagnosed with Rubinstein-Taybi Syndrome. Through all of AnnaKate's struggles and delays she surprises and delights us daily! Thanks for marking this spot and coming back often to check in on us.
15 comments:
You said it, my friend, perspective. I am very proud of you, I admire you, and I love you! Sorry we didn't get to talk much @ swimming....I'm a little afraid we'll get in trouble if we chat it up too much! BTW, Em was angling for Hello Kitty stickers! Ha!
xoxo. C
I love you girl and I'm praying for you, Billy and AK.
"All athletes are disciplined in their training. They do it to win a prize that will fade away, but WE do it for an eternal prize. SO I run with purpose in every step." 1 Cor. 9:25-26
"Therefore since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us."
Heb 12:1
I love your positive attitude. =) I'm an optimist myself but sometimes convincing yourself things will work out is hard! I have no doubt you can handle whatever is thrown at you. Let us know when the test is, we'll be praying!
You really do have a great attitude and have handled all that you have been thrown with such grace and courage! I'm sure that you will continue to do so even though things don't always go the way you have planned.
AK is a trooper. It may not be anything, but at least you will know. What if she starts the CPAP and it makes a difference. What if it really is not that big of an adjustment at all. It is not what you planned, but this may make the good things she does now now and make them great. More oxygen to the brain is a good thing :). I guess I am trying to send some positive thoughts. Just think of this as something to help her, instead of another problem. Who wouldn't want a child that is happy in the morning.
Kelly I really admire you! You are such an amazing mother, wife, and friend! God put AnnaKate in your life because He knows you and Billy are the perfect parents for her. Whatever comes of the sleep study, you will do what it takes! Love ya girl!
I am going to try and channel your postive thoughts at Will's IEP meeting that is coming up. I am sure that you and AK will get things figured out with the CPAP machine quickly.
Kelly- You are such an inspiration! I LOVE YOU! I love that you blog about "glitches" and somehow can remain so positive. I'm going to model myself after you. Keep us up to date with whats going on. I'll be praying.. (Hugs)
Thanks for sharing your thoughts. I really believe that thoughts completely shape our emotions and attitudes and behaviours. Giving us insight into your thoughts, gives us insight into your strong spirit. It is OK to have days of feeling bleak and disappointed and overwhelmed, the trick is to work through that and get back to living life again. not getting stuck in that bleak place. You seem to be able to really push through those rough times. And AK is learning that strength from you!
Kelly, I'm going to email you a couple of photos.
I understand, I so understand!
Our sleep specialist explained to us exactly what you have described - the possibility that a big improvement might not be enough to avoid the dreaded cpap.
I actually know another Australian RTS family in that situation. We joke with each other (and with the doctor we share) that our babies are fighting for the sleep apnea "gold medal". Yeah, good times...
Don't worry, we are in this together and we will get through it together.
:-)
Yep. A glitch. Well considered, Kelly.
Addie, too, still has apnea after removal of tonsils and adenoids. When she had her surgery last May, the complications ended up being life-threatening. We did do a follow up sleep study that showed she still has apnea, but! The ENT, Pulmonologist and respiratory specialist determined a cPAP was not necessary for her. I can explain more about the "why" of that if you want to drop me an email.
Either way, I know you will find peace. I can see that in your attitude in every post. You're a good mama.
You are not one to get passed at the finish of a race! Love your positive thoughts! I will be thinking of you and AK! Kelly F
Kelly-
Lori referred me to your blog to pass the time as I sit by my son's bedside in ICU. You have such a positive attitude. Loved reading it! Praying for strength and courage for you and you family. Hope to see you at switcharoos again this year!
Silvia
I tried to write something that would reinforce your spirit but all I could think of was you just amaze me. Ak is one of the luckiest little girls in the world to be your daughter. And I'm pretty lucky to be your aunt.
I'm so glad you have this attitude about AK's possible needs. I know I'm thankful for the limited medical issues my kids have had...everytime I go to the children's hospital, I see kids that are "way worse" than mine and I'm thankful for what I have.
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