Thursday, June 30, 2011

It's seriously time to update the blog! So much has gone on that I am not sure where to begin. So let's start with the fact that Grayson is scheduled to get his trach out August 10th, which is so exciting and scary all at the same time! We knew he would get it out, but when the doctor says it out loud it really hits you that its for real! He had a sleep study back in May and that was the final test that he needed to come through to get it out and he did great! His test results from just a year ago were so much different that our doctor was surprisingly impressed! And that was the words he used! So there is no sleep apnea and his o2 levels were good so he said "I see no medical reason for him to have this trach". Those 11 words are life changing for us. We have learned to adjust to having this unnatural, stressful, uncomfortable, lifesaving tube attached to him and to imagine what life would be like without it is very strangely intimidating. I look so forward to the day that I can give him a bath and not worry about water getting anywhere near his trach, or I look forward to seeing his neck for the first time since he was 8 days old without a tube attached to it, or getting to go swimming! Wow we get to go swimming for the first time ever with him! Or that we don't have to suction out the trach, or worry that it is plugged, or that it got pulled out somehow. The fact that his neck strength will improve significantly, the list goes on and on! Life as a trach mommy is very different than anyone could ever imagine unless you have been through it. You can never let your guard down, you constantly feel like you are in protection mode, protection from anything getting in it, or anyone with germs, or cigarette smoke being near him, or people touching his hands then him putting those little dirty hands near his trach....its exhusting sometimes, but necessary. I have seen Luke (my oldest son) actually tell this sweet little old lady who wanted to touch Grayson's hand that she doesn't need to be touching him! It was halariously awkward LOL. My point is, trach life is serious, its stressful, but its also something you come to grips with, and once you get dependent on it, you adjust your whole way of life around it. And now we are going to learn to adjust to a new life again without it....and I am ready to take that on. The countdown has begun, we may be doing our last trach change forever in just a few short weeks.
So the next big thing is, we have a walker on order! This is so exciting for our little man, because we were told that he wouldn't walk. We have been using the one at our therapy center for a few weeks now, and that;s the one we will have at home, YAY. My prayer for Grayson has been that on his first day of school he would walk in that building with no trach. And well, it looks like he will! He starts school Aug 31st and by then our walker will be here and he WILL walk in his school with no trach. It doesn't look like I thought it would, but its beautiful and I can't wait to see him do it (insert proud mommy in tears here) LOL
He doesn't love the walker but he is getting better about using it, and so far he has tripled his distance and walked 21 steps in a row on his own, which is a big jump since our first time in it. He likes to walk fast, imagine that! Going slow makes him cry which is so typical for a boy:)
So as you can see God has really been at work at the Hill house, and I am so glad to keep updating so much positive, between Luke graduating high school, William graduating 5th grade, and Grayson getting the trach out, we have a lot to be thankful for. We are blessed.

Friday, March 25, 2011

Life Can be an Emotional Roller Coaster

Well the title of this blog post says it all! Life really can be an emotional roller coaster. It is also what you make of it. Sometimes a a mom of a special needs child you feel like such a failure when things aren't on this certain timeline that you have set for yourself and your child. Now I know that I am not really a failure, but sometimes you just think, well maybe if I done more floor time, or maybe if I had done more theraputic listening in the last week, or maybe if I had put him in his stander everyday instead of only 5 days this week, and oh I forgot to do his mouth excercizes! Well the truth is I am not really in control( much to my surprise). And to be honest I really don't want to be. Grayson has come so far, and has absolutely blown doctors minds with his progress, and I think I just need to let him be a kid some days ya know! The pressure to succeed is so great for a typical child, and for a child with disabilities the pressure can be even greater, because you are truly fighting for their everything you feel like. Society is very judgemental, and when they see a child/person with disabilities or special needs it almost seems they are discredited immediately for how valuable they are. Well I am here to tell you that our son is extremely valuable reguardless of his disabilities. He provides jobs for 11 doctors, 5 therapists, 1 nutritionist, a preschool teacher, an oxygen delivery truck driver, UPS drivers, 2 medical supply companies, and lots of technicians at kosair that run labs, xrays, ultrasounds, mri's, and ct scans, and he is just one little boy! I am a very positive person, and I know that we are truly chosen to be this amazing little boy's parents, and WE are his voice, his advocate, and I will do whatever I can to make his life easier. So I feel like it is my job as his mommy to educate people on the truth about his value and worth. God has made him perfect in is image so who are we as society to ever judge what a person looks like? I often wonder what people are thinking when they stare at us when we go out, it makes me think lots of different possibilities. Most of the time the kids are the cutest, they wanna come over and see his wheelchair and then usually get a good look up and down at him, then they just smile at him, as if they know there is something special about him, I just love that! I really look at everything so different as if God gave me two new eyes when he gave me Grayson. I mean at the end of the day aren's we all God's children? Does it really matter where you live, go to school, or whether you are democrat or republican, aren't we supposed to pray for our neighbors and take care of eachother and be Christlike? I am just saying think about what words you say, does it bring positive or negative to the situation? Would something that you say in joking be hurtful to others? I know I have been guilty of that, many times. Recently there was a nation wide honored day to end the "R" word (retard, or retarded). Ooooohh how I can't stand that word. It is so hurtful! Please if you use that word as a joke, in a joke, or to make fun of someone even if they aren't "retarded" STOP, please choose something else to say. Think about what that word really means and how someone close to you may feel very hurt by that word. Think about how you would feel if your son or daughter had disabilities or special needs how that would make you feel to hear that word used as a joke to make fun of someone or a situation. I can tell you it does not feel good and it hurts. My blog posts are usually upbeat, but this is something I had to get off my chest. My prayer is that whoever reads this will maybe look at things a little differently and then think about things differently, then say things a little differently. We are all valuable:)

Wednesday, February 23, 2011

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:)

Monday, January 24, 2011

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.

Sunday, January 16, 2011

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
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'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!

Wednesday, January 5, 2011

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!

Sunday, December 5, 2010

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 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!!