February, fun, and the future

There is so much to update that I am having a hard time figuring out where to begin! We have been so busy here at the Hill house, and I am very thankful that it is all good things. Preschool is off to a great start, so far we have had a day that was all about snowmen, and a day dedicated to all Valentine's day. Grayson has really enjoyed listening to all of the stories and watching the finger puppets as well as making snow, and stamping snowflakes using a sponge and puffy paint.

Week two we did Valentine crafts and he made mommy his very first Valentine which is now on the refridgerator (of course)! It was marble painting on a cute heart and then we traced his hand and shaped it to say I love you:) I love it!

Last week Grayson had an eye procedure, and it went extremely well. He was super mad after he woke up from anesthesia, but his eyes look amazing! We had put off this procedure for about a year because of all the setbacks he had with his kidneys last year, which are now stable and we are believing they are healed! Basically his tear ducts were clogged which made his eyes very puffy at times and they didn't drain properly. These stints that were placed will stay in for about three weeks and then are taken out in the office, which blows my mind! I still am blown away by what doctors and surgeons are able to do in this modern medical world. I say it all the time that I feel like doctors are gifts from God. He has blessed some very smart folks with the ability to learn these incredible things that help kiddos like ours and that really means a lot! So no more goopy eyes and I know it has helped his vision remain clearer because his eyes aren't so watery all the time now.
So moving on. I am so ready for spring! We have a sleep study scheduled in April, then we find out if the trach can come out! For the first time I feel like we really have a shot at it:) There are so many amazing things that he is doing, that I feel like this time it may be different. So please pray that all sleep apnea issues are gone! That is the only reason that he continues to keep the trach in the first place. I try not to let myself think too much about the future, only because it is just that...the future! But I can't help but think about seeing his sweet face for the first time with no trach ataached at the base of his neck. What a miracle his life is, what a testimony that will be to what God can do! We still get emotional about what he has already done for him and for us through him! We feel like we have been let in on some sort of secret on life, it truly is an honor to be trusted with such a special little boy. I gotta tell the big brothers are pretty proud of him too. We have had a great start to 2011, and for that I am thankful:)

45 Life Lessons

A good friend of mine shared this list with me, and I just had to share it will all of you. Even if you don't agree with all of them, most of them are right on the money. This list of life lessons were written by a 90 year old lady named Regina Brett. Please take the time and read it to the very end it really is worth it.
1. Life isn't fair, but it is still good.
2. When in doubt, take one small step at a time.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick your friends and parents will. Stay in touch.
5. Pay off your credit card every month.
6. You don't have to win every arguement, agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's okay to get angry with God...he CAN take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate resistance is futile.
11. Make peace with your past so it won't screw up your present.
12. It's okay to let your kids see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be secret, you shouldn't be in it.
15. Everything can change in a blink of an eye. But don't worry God never blinks.
16. Take a deep breath, it calms the mind.
17.Get rid of everything that isn't useful, beautiful, or joyful.
18. Whatever doesn't kill really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life don't take no for an answere.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare then go with the flow.
23. Be eccentric now, don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but YOU.
26. Frame every so called disaster with these words,"In five years will this matter?"
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything, give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously, no one else does.
33. Believe in MIRACLES!
34. God loves you because of who God is not because of anything you did or didn't do.
35. Don't audit life, show up and make the most of it now.
36. Growing old beats the alternative.
37. Your children only get one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside everyday. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone elses we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel get up, dress up, show up.
44. Yeild....
45. Life isn't always tied with a bow, but it's still a gift.

The Latest Stuff

I am really tired of looking at brown half melted snow and dreaming of the days that about 75 degrees outside! I feel like that this is the year that taking Grayson to do some really fun things can really happen. Last year I was still very nervous about exposing him to germs and sick people that we stayed in pretty much everyday, no matter what the weather. So this is a new year and he is like a new

kid! Turning three has been so huge for him, it's like he knows that he is supposed to be doing bigger things now:) All the literature that I have read on Sotos Syndrome says that age three through five is huge in their development so I can not wait to see what that means for him.
Well, the birthday party was a huge success! He loved all the fun things that we did and even participated in cake and presents, I never know if he will be interested in things or not, and he was! We had a Mickey Mouse Clubhouse birthday party and he loved looking at the balloons. This week is big for us, we will meet with the school system finally, we had to cancel because of snow and finally we are meeting to get things rolling. I have found out that 2 days a week we will have a preschool teacher come to our house and do homeschooling with him. I have got probably everything that a preschool would have here at home so I am hoping to learn a lot from watching her in creative ways to use it so that he can learn from me as well. He trucks over mommy pretty easily, so maybe this teacher can stand her ground and him not get one over on her..lol
We also met with our kidney doctor and things are stable:) He said that there was really no improvement, but there were no signs of negative change either, so that is a good report in my eyes, we'll take it! Next month is his eye stints and then in March we have an MRI of his brain and spine. When Grayson was born there were concerns of a teathered spinal cord, and we couldn't really do anything about it until he grew enough to see if he would grow out of it. Well, he's grown and now it's time to address that issue again (yuck). My prayers are that the spine is fine, and the brain has shown improvement, I can't get wrapped up in what a teathered cord could mean, because I know that surgery is the only repair. NO THANKS! So we'll see, and then we'll do whatever he needs. On a funnier note, Grayson has learned to take his leg braces off! Now, I can barely get them on him and the little stinker has figured out a way to get them off without my help, and with shoes overtop of them...it's crazy! He may not be up running around like a typical 3 year old but I am definately running around keeping him out of trouble like a typical 3 year old!LOL He is definately a toddler, and I love it!

New year, new changes

Well the holidays have come and gone and that means a new year with new blessings and changes await! Grayson ages out of his therapy program and starts a preschool program, and we are getting out so much more than we used to. Since now we can travel without him wearing oxygen full time which it makes it so much easier to get in and out of places. I dispise travel oxygen tanks..they are no fun! He is more free to move around and doesn't have the restricions of tubes and cords like he used to. Our next big thing to tackle with him is he has to have an eye surgery, it isn't too bad other than he has to be put to sleep which I hate! But our doctor will place tiny stints into his tear ducts to help them stay open better, apparently his get clogged very easily. He will keep the stints in for 3 weeks and then we get them out and that will take care of it. His little eyes get so junky and they just look like they feel miserable! We also got his new equipment last week, and let me tell ya we need a bigger living room! He is so cute in his new big boy chair and William loves to roll him around the room like a race car..of course Grayson cracks up! The other peice is a stander, which is padded and helps him stand safely so that he can learn to bear weight. I had no idea that people who do not bear weight on their hip joints are more likely to have their joints pop out of socket, so this stander is very important for his joint development. It's crazy to me how much we have learned in just three short(long) years! You can make yourself crazy with all that knowlege. I used to go on all the websites looking up medical information and researching things that I thought would help us, but it really made things worse. I have learned to take each day as it comes, not looking ahead at what may or may not happen works much better for me. Trusting that the Lord will provide his every need makes more since than putting my trust in what the website says. I am not saying that we don't trust our doctors, but we trust God first. I believe that doctors are very special gifts from God and I do not discredit their knowlege, but God is the master physician! another cool thing is Grayson turns three this Friday! What a miracle that is to be celebrating his third birthday! We are moving to a whole new lifestyle here at the Hill's. We are looking at big boy beds for him as well as starting a preschool program, new schedules and less sickness!! So please keep us in your prayers because it is working! Happy New Year friends!

More Blessings

It has been a while since I have posted on here, and I have to say it is only because I have become so busy that trying to find the time has been a challenge! Their is lots to update and it's all good:) so here we go! We are in the final days of our home therapy with First Steps, we only have 1 month left and I am really going to miss all of my team who have been with us since we brought Grayson home from the NICU, this is such a bitter sweet feeling because I am nervous about the changes, but soooo proud of him for being able to complete this program! Grayson was not given much credit and our doctors didn't think he would make it very far in life, so here we are turning three in a month and moving out of his home therapy to a therapy center, as well as looking at preschool! His neurologist and pulmanologist were so pleased with his progress in the last few months and it looks like we will do another sleep study in the spring to find out if there is any apnea. If there isn't we can thake out the trach! Just saying that makes me smile:) what a great life for him not to have that thing anymore, I mean you do get used to it (sort of) but it is never something you want long term. The new leg and back braces are NOT his favorite, matter of fact he hates them! I keep saying he will get used to them, but so far not happening..lol so keep him in your prayers, that he will learn to like them! As for the rest of my gang, we are just looking forward to Christmas and the break that comes with it! I really want to enjoy this season and be grateful that we are all here together and we have made it another year:) Its truly a miracle in my eyes, with what Grayson went throught this past summer with his kidneys it could have been very different, and I am going to enjoy all the moments that I can! Merry Christmas!!

Embracing Change

I am learning more and more each day to embrace change. So next week we are meeting with the school system for Grayson. This is such a big deal because we are transitioning him out of First Steps (his therapy program for 3 yrs and younger) to JCPS. We will stop seeing the therapists that we have been seeing for almost three years now and move to a completely different way of doing things. Basically two preschool teachers and the guy who does the evaluations will present what JCPS can offer us for Grayson. Here's what I know so far. There is only one school in the enitire state that can accomidate us and offer us the education that he needs. Also, this school has a sensory room, a pool, and adaptive indoor bowling alley and a handicap accessible new playground! This sounds amazing so far right:) I have also learned that kids who aren't ready for being in the classroom for medical reasons have the opportunity for a preschool teacher to come to your home and teach a couple days a week. So until Grayson is ready to go to the classroom we will use all the in home education that we can! I am excited, but scared to death at the same time....so yall pray for me okay!
Next update, we will be getting his leg and back braces next week:) this is one of those bitter/sweet feelings, he needs it, but he is going to hate them at first. So we will start him out for 30 minutes at a time and then work up to a few hours a day in both of them. The good thing is that he should be able to sit independently with his back brace!! He is going to love that, he wants to be independent so badly!
So, a couple of days ago at about 5am, Jay and I heard Grayson making some new noises that sounded very different than his usual sounds. I looked over at his monitor and saw that all his levels were fine and so I layed there for a few minutes longer. Then Jay and I looked at eachother and he says to me" will you check and make sure he is ok, he sounds different". so I lean over his bed and he looks fine and his monitor looks fine. I then thought I had better make sure that his trach is not plugged off. Well, I bent down to suction his trach and it was out!!! The little stinker was laying there with no trach and he was fine!! Of course we hurriedly put it back in, but he was fine...this was a huge moment in all of our lives! Grayson was totally breathing on his own with no trach YAY! That was definately a thank you God moment because I have no idea how long he went without it but he was just laying there like no big deal mom and dad:) New prayer is that sleep apnea is resolved by spring so he can get it out!! He apparently does ok when he is awake without it, but during sleep is another ballgame all together. I have said it before...never a dull moment around here:)

Why was I created?

The other day I checked on my blog info and it said that 267 people had read my blog that month. Now if you look at the number of people who technically follow our family's blog there are 3 listed. So that means 264 people read our stories and I have no idea who they are..lol The interesting thing about this is that you never know who is watching you, or who is paying attention to your actions as a person, mother, christain, volunteer, or whatever it is that you do. Last week at our YadaYada prayer group(funny yet very appropriately named) we were asked, "why were you created?" I have never really thought about this. Up until 2 years and 9 months ago I knew a very different life. I worked full time, I made a very nice living, I went shopping all the time, we took trips, I wore a size 6/8...lol! By the way I would really like to get back to that size..haha, we went out to dinner every week, my husband and I spent a lot of time together, I rarely missed anything that my boys did and I drove and very nice little car:) Fast forward 2 years and 9 months...I now work very part time which shockingly I like:) I almost never shop which I miss only a little, I am not a size 6/8..lol, I have developed a love for baking that I knew was in there but never had the time to do it (which probably explains why I am not a 6/8)lol, my kids come home to their mom everyday as well as a cooked meal (most of the time) I can count on 1 hand the number of times I have been out for dinner in the last 2years, as far as trips go, that hasn't happened yet, but I sure hope it does soon! I drive a minivan!!!! So as far as why was I created, I think it changes...often. My family has had our lives completely transformed, our needs changed the minute that Grayson was born. What we thought was going to be was not, it was soooo much more! As far as I am concerned for the better, even though my life is harder than it has ever been, my strength as a mom, wife, friend, and most of all an example of a christian is more than it has ever been. I always try to be very real in my blogs, I will never sugar coat my life, it's not perfect nor am I. But God has a plan, it is so cliche' but it's true. I don't always understand his ways, but ya know maybe I am not supposed to. I encourage everyone who reads this blog to truly ask yourself "why were you created". I have answered why I think mine is, and I choose not to reveal it in my blog, because I want whoever you are to not be pursuaded by any answere that I give. Be honest with yourself, and I would love to hear your answeres if you are comfortable with that. Post is to me personally on facebook, or here on the reply area of this blog. God made you with a purpose and a reason, reguardless of any disabilities or hardships you may face. We never know who is watching us and why they think we were created may really surprise you!