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!

These are some of my favorite things

It has been a crazy summer! Instead of posting a blog about all the things that I wish were different in my life I am going to post a blog about the things that are perfect in my life. My life is just as it is supposed to be. My husband, my kids and I are together, we have a home, we have cars, well sassy is a van (named very properly) lol, we have food, our dog is being overly loved at my parents house until we can bring him back home to us, I have the greatest friends who love me in spite of myself, and most of all we have our faith! As much as I want to fall apart on some days we are so fortunate to have this thing we call life. It is very fragile and precious! So here are a few things that I love about my life, first that I am still able to laugh at the littlest things, the fact that my husband is still the funniest guy I know, my two older boys love and adore their baby brother and would do anything for him with no complaining, my brother thinks I am a hero, I love my in-laws:) and they love me too:), my parents treat my kids as good as they treated me, God gave me a love for baking like my grandma:), I got to have a very special little boy who taught me to fight for everything that I believed in even if it sounds nuts, I get to live in a country that allows me to love Jesus in public and not be killed for it, and most of all I have faith. Faith that no matter what man's opinion is of me and my life, that with God all things are possible.

YAY GOD

You just never know what God has in store for you. One minute you are sitting in your house drinking coffee and the next minute your child is being admitted to the hospital. Well, this has been how life has gone for us these last 2 1/2 years, but each time we spend time in the hospital with Grayson my faith gets stronger, which is bizarre, but it makes sense because at those times I know that I have done all that is humanly possible and so have our doctors to keep him healthy. All you have in those moments is your faith. I have to believe the promises that God has made for our family. If I don't then I would live in fear all of the time! The truth is we are wonderfully and beautifully made by God, and even though I don't like the fact that Grayson and our family has to go through such hard things it has brought us together. We know now that his kidneys, ureters, and bladder are abnormal. We also know that his kidney function is perfect!! Explain that to me and it not be a God thing?? On paper his kidneys should be a mess, but the truth is they aren't. The issues that his kidneys etc. have should be making it harder for his kidneys to work, but everytime they check his kidney funtion it's in normal range(YAY)! So this post is just a big yay God from me!

A new season

There are so many changes with our family, I can only say whew! I know I haven't posted in a while, but we have been really busy:) William started football, Grayson is going to his new therapy two days a week, and Luke is getting ready for his senior year! Not to mention all the typical busy stuff that always goes on around here. I feel like we are in a totally different season for our family. We are learning our new normal (again). Which any time there is major change in your usual routine it takes some getting used to. I am really looking forward to school this year for my guys,(all of them). Grayson will begin getting homeschooled for preschool, William is in the fifth grade, and this is Luke's last year at school so all that senior stuff is so fun! Plus I love fall and Grayson breathes so much better in cooler weather. Yesterday was our wedding anniversary and I just thought so many times throughout the day about how serious your wedding vows really are. I know that when you say them they mean a lot to you, but until you go through and put some of them to the test, they take on a whole new meaning. I am so thankful for my family, I don't know what I would do without them! As far as an update on Grayson, he has had a great summer dispite the heat. He has lost weight again (ugh), which drives me crazy! But I am going to continue to figure out how to keep that from happening. Thanks for keeping us in your prayers.

Decisions

Since my last post we have made some big decisions. First, we have decided not to do the mandible(jaw) surgery on Grayson. After talking with another mother who's son had it done, doing lots of researching on the internet, speaking to his speach therapist as well as his neurologist the decision is to give him about another year to see if he grows and his face shape changes enough to take care of the issue. Basically we are praying that God will give him a good growth spurt! I have made peace with this decision because most of all we listened and waited for the Lord to guide us, I knew I was not able to do this surgery and I knew that if I were patient it would be revealed why, and it was:) Sooo, we keep the trach (sigh), but we also don't put Grayson through a very painful and stressful surgery that very well may not have been right for him!
Now on to the new stuff, we met with our new orthopedic doctor today. He was very impressed with how well Grayson could hold his head up and support his weight on his legs. We went knowing he would write for leg braces, but we didn't know was that he would recommend a back brace too. I feel conflicted on this only because I did not want my child to need braces on any part of his body, but I also know how much they can help him. What was so great was our doctor says to me, "these will get him walking quicker." I nearly fell over! I was standing there and I just wanted to hug him! He didn't say these MAY help him walk, or that IF Grayson ever walks these might help, he said the words WILL WALK!! I love that:) So I made the decision to be thankful once again. He doesn't have to wear either of them all the time, which will be easier on everyone (especially when traveling to all his appointments and therapy). I will keep everyone updated on the amazing progress that we see!

Living on faith

Faith is a word that I use to just throw out there very lightly. It has taken on a whole new meaning now. We as a family have to live by our faith. Faith that God will meet our needs emotionally, spiritually, financially, and with our health especially. If it weren't for faith I would probably be nuts by now...I am probably a little bit nuts now and then(LOL). But the truth is with our family there are times you feel very out of control and all you have is faith. When we go to the hospital there is so much reality that it makes it difficult to say all the time that your faith is enough, because its tested so strongly there. As much as our doctors don't want to say to us the health issues that Grayson has we want to hear them even less! I am trying to always remember that God is the master physician, and that even though these very smart (sometimes intimidating) doctors are saying negative health over Grayson that I know that God is bigger than all the sickness and health issues. Don't get me wrong we have great doctors that take very good care of him, I know that they are doing their job by telling us what they see, it just hurts! We knew very early that Grayson had some kidney problems. The issues are grade 5 (highest level) kidney reflux, as well as some very large kidney stones. These two combined are very dangerous if there is a UTI. This is why we were in the hospital treating this infection with 2 different IV meds. The reflux continually lets infection flow back up into the kidneys even if it has gone down into the bladder already. This can cause kidney damage. We keep getting told about 2 different procedures and they both stink! One is a vesecostomy, and the other is a ureterostomy. We want neither, the other option is to do home catheters on him which I would do myself(yuck). These three options would keep the big kidney surgery at bay so that he can grow and it will be much safer for him to have it done. The big kidney surgery is to repair the reflux, and go in and get the stones out. This sounds easy, but we are learning that nothing is easy when it comes to kidneys. So back to faith, we are praying that our faith in God to do miracles will completely heal all his kidney issues. Shockingly his kidneys work very well, so that leads me to believe that we can keep up with what we have been doing and wait for our miracle to happen! It's so easy to only believe what we see with our eyes to be true, but we have seen miracles before and I can't just stop trusting in that, its not the popular thing to do, but for me the alternative is not an option at all! When it comes to your kids you will do whatever it takes to keep them safe and healthy, and faith has to be a part of that. We as parents we don't get little instuction books with our kids, and with children with special needs there is even less to read. So I am going to trust in the word of God that says on earth as it is in heaven. Well there is no sickness, infections, syndromes, trachs,disabilities or pain in heaven, so that is my little instruction book.

New adventures

We started our new therapy today! This is extremely exciting because I have been fighting to get this therapy since January! I was concerned that being in a new place with a unfamiliar person making him work would create a meltdown, but he did awesome! I say its because she was a young pretty blonde, but who knows...lol. Next week he will get xrays of his hips and legs then measured for his new leg braces. I have mixed emotions about this, because I know they will help him, but I hate the fact that he needs them. It really isn't a big deal, I am just glad we live in a country where our special kids can get these things to help them! I want to reward him for all the great accomplishments he is making, but I am still trying to figure out how to do that, he doesn't eat ice cream, and he's so stinkin picky about his toys! I will figure something out. Also, I have decided to homeschool him for his first year of preschool. This was a huge decision for us, I know that everyone says to get your kids out for all sorts of reasons, but I know that he is not ready for preschool 3 days a week. His lungs are not used to that kind of germ exposure. With a trach you get infections soooo easy and its not worth a set back when we are so close to trach removal. God has really been working on me lately, I am finally back in a place where I am listening for his voice instead of relying only on man's opinion.(not easy!) So I say thank you God for allowing me to be a bonehead and loving me anyway, even when I am angry with you and the way you handle things.(he still loves me:))

Praying for a miracle

I am sorry it has taken me so long to post, it has been a very interesting and eventful week. Well, we did meet our new doctor and he was very good with us. Not all doctors have good bedside manners, this one does. He presented us with the reasons Grayson has apnea as well as what he thinks it will take to get his trach out. The truth is I could not post anything because i needed some time to chew on the information he gave us. It is extremely overwhelming! Honestly he presented us with no good options. Apparently Grayson's jaw is recessed (not bad) but bad enough that surgery is required to fix it. This is a big deal because his tongue sits to far back because the jaw is back, therefor blocking his throat especially when laying down, hence the obstrucion causing the apnea. Now, I knew we were going into a surgeon's office I just wasn't prepared for what he would say. He told us that to correct this problem he would need to break his jaw pull it forward and then put screws along the jawline that would stick out through the skin and every few weeks we would need to bring him in to tighten the screws! I thought I misunderstood at first because that just sounded a little bit barbaric for a 2 year old, but that is what he said. Grayson would wear these screws and also splints on his elbows to keep him from touching the screws for about three months. So that option just stinks! Option 2 is a lip/tongue fusion where he would attach the two together for a few months and hope that the tongue stays forward. He would not be able to take anything by mouth,for either of these surgeries and we just now finally got him to babble and who knows what regession that would take. So that option just stinks! Option 3, wait for his jawline to move on its own which typically happens in the teenage years, which means he would have to keep his trach for the next 10-12 years (not an option)! I have to step back and try to wrap my mind around this situation, basically we have to decide how badly we want him to live a trach free life. I have always said that I would do whatever it takes to get him off of that thing, but I just simply wasn't prepared for this. None of these are good options or a guarantee. I know that God has a plan, I just was praying for a different (easier)one than this. I read this quote from a gentlemen talking about God and it read like this, "When you are down to nothing, God is up to something". I believe that God is up to something for our son, and I have the faith of a mustardseed, and I also know that ALL things are possible through Christ who gives me strength, and i believe in MIRACLES!!! I just pray that I can remain strong and not feel the feeling of defeat from this. We need prayer as his parents who are supposed to make all the tough decisions that he can not make, this is the toughest so far. So, I ask for prayer again from all the folks who read this blog. We are certainly going to need it.

A big week for the family

We have so much going on around here! This is a big week for our family. We are going to see a maxillofacial surgeon to find out if he can help with Grayson's sleep apnea. His apnea is what is keeping us from getting his trach out. I am trying not to think so much about it, but its kinda hard not to. Also Grayson is finally feeling better from being sick with his virus and tummy infection. He is taking the majority of his calories without gagging! So now maybe we can get back on track with him gaining some weight back. He lost 2 ounces from his last weight check, which is a total bummer, but considering he was sick with fever and respiratory issues it could have been a lot worse. I have some prayer requests that I need to mention, I have dicovered in the last few weeks that Grayson has temperature regulating issues. I did not know that this could even be an issue, but guess what? It is and I don't really know how to deal with them. I have learned that he can not tolerate being hot. When we go outside even if its just for a few minutes his little body temp goes way up! Yesterday it was 103! So I was freaking out and stripped him down to a diaper, as well as laid cool compresses on him put him on the floor with a fan blowing on him, tylenol too ( it worked). I think it takes him about 30 to 45 minutes to get regulated again. Now let me say he was cracking up laughing at me the whole time this is going on, which he does on a regular basis (he is such a boy).Plus he loves to be naked like most other kids his age. I am looking into a coolong blanket for our next big purchase to see if this helps him with traveling while its so stinkin hot outside! So far everything i have found is for adults not kids. Really looking forward to this weeks cooler temps so then maybe he can get out and not be so miserable. We are outside people and I know he would love being outside too if we can get this figured out. Until the weather is less hot we are indoors for sure. So I am praying that this is a very temporary issue for him, and that God will heal him of any issue that may be causing this. With God ALL things are possibe :)

What's next for Grayson

As a mom you learn what each cry means with your baby. Well, we could not hear Grayson cry because of the trach. The trach is located underneath where your vocal cords are and when you talk you push air above the vocal cords and that is how there is sound. With a trach there is no sound. This was one of the hardest things to overcome for me a I learned all about trachs. As his airway got stronger and his lungs developed, he would make sounds over top the trach, even though they are very airy sounding its a little peice of heaven to hear them. The goal with an infant or anyone with a trach is for them to be able to wear a speaking valve. This is a little button thingy that goes over the trach and forces air above the vocal cords so that they have the ability to use their voice! Its the absolute coolest invention for parents who have never heard their childs voice or heard them cry because now we can!!!! Grayson could only tolerate his talkin button (that's what we call it)for a few seconds at first, but now he wears it all the time:) We are able to hear him giggle and coo and i swear he is trying to say mama! We know that this is the next step to removing the trach, you have to be able to breath with your natural airway not an artificial one (trach). So, we were told there is a series of things that Grayson needs to be doing to have the trach taken out, first no vent...CHECK,second come off his oxygen during waking hours....CHECK,third tolerate speaking valve...CHECK, now our big mission is to be able to tolerate the trach being capped off (basically you put a lid on it so you have to breath on your own). We are working on this one its still new to him, we just got it not too long ago. The other issue is dealing with some mild sleep apnea, and thats kinda scary because it may take a surgery to correct that. We go next week to meet with a very highly recommended surgeon to find out if anything can be done. If he can not help us then we may be headed to Cincinnati for a very lengthy stay to find out if their big docs can help him. Either way I just want to know! If he is going to keep the trach, then fine, I know how to care for him with it. I just want to be his mommy and not have to worry about all these things on a checklist anymore! He is perfect in my eyes with or without it, and he is soooo happy! I am ready to just enjoy the little boy that God gave us, and has blessed our family with and these other things can just be secondary.

the blended diet

For the past three months I have been blending Grayson's food up in the blender. I also keep track of his calories in a food journal. It takes extra time, but I feel like it is completely worth it. Up until this point of this new diet I gave Grayson a infant or toddler formula, this is truly easier, but he gagged and gagged almost constantly! He can't throw up because of his nissen ( a surgery for the stomach which keeps kids from being able to throw up and asparate which is very dangerous for trached babies). We also had him on a continuos feeding pump every night for about 8 hours. This pump was what was delivering the majority of his daily nutrition. So, Grayson would wake up full, how backwards and unnatural is that? Don't get me wrong, I am glad that there is this option because at first this is how he got his nutrients. But for a child that already doesn't want to take food by mouth to wake up and never feel hunger and then to gag everyday and be miserable. So I had to do something different! He was losing weight and developed a hernia so I prayed that God would give me a better way of feeding him, that did not include synthetic formula or a pump. So I began learning how to blend natural food that your body digests more quickly thin enough to get through his gtube. This definately has its own set of issues because the tube is very small. After talking to our nutritionist and figuring out his dairy, protien, carbs, and liquid requirements I began the blended diet. Some days its better than others, but no matter what he is happier, healthier, and all these other things started happening, like his hair came in thicker, he has more energy and stamina through his therapies as well as he has been sick less often! yeah:) My blend for a full day for him goes something like this, it varies from day to day, 1 box of boost( down from three) 1 avacado(pureed with apple juice), 1 jar of baby food chicken, 6tsp of olive oil, 10 tsp of whole grain infant cereal, 3 oz of pureed fruit, and 2 oz of yogurt and 4 tbsp of syrup for extra pack on the LB's calories. This makes a lot for his little tummy to handle, but because its more digestable foods and not so heavy it digests better. Tomorrow he gets weighed and that always wears me out because I need that scale to show good weight gain! Its so hard not to measure my success as his mom by that darn scale! I never counted a calorie in my life and now I am a total freak about it. So we will see. Sayin prayers tonight for a good day with the nutritionist tommorow!

Weekend plans

So this weekend is Father's Day, and we are celebrating this year at my parents house, which also means packing for a full day with Grayson and all his equipment. This is probably my least favorite thing about getting out of the house with him. The alternative is never geting out of the house which let's face it you can go nuts if you don't get out. I don't think people realize what it takes to take a child out that has physical limitations not to mention a trach or feeding tube. So, here is the list, trach bag(emergency supplies for trach) this goes wherever he is even if its just for a walk around the neighborhood, suction bag for suctioning trach, oxygen tank for when he falls asleep and we are not at home, monitor(measures his oxygen levels and heart rate), then we still have to pack his backpack full of diapers, extra clothes, gtube supplies and food for him, and of course his favorite toys, then his rocking chair (which he can now tump backwards and giggles while mommy is completly freaking out). We have to now baracade him in everything whether it be his chair or whatever because he figures out a way to get out of it or roll off it. Which is kinda funny because our docs didn't think he would ever do much more than lay around with very little movement. Let's just say he kicked out that theory at about six months old. So as you can see it takes a lot to go out for the day. On the other hand, when you have help(husband, 2 big kids aka packmules) it makes it much easier. These guys never complain about carrying his equipment, or packing it the van for me even in the rain, they just do it. I've trained em well(haha). To think I used to complain about having to carry a diaper bag HA! This equipment won't always be a part of him, but for now it is and like any other situation in your life you just simply figure it out. We love him and its what you do :)

Good to be Home

When we git home from the hospital you would think that I would need a nap or just need to sit and do nothing, but not so. I suddenly get this burst of energy and can't wait to get things unpacked and definately washed. Anything that has been inside that hospital has be be washed and cleaned. Plus you feel like you need to reclean your own house too. Then there is the pile of phone calls that need to be made, such as calling all of the therapists that you had to cancel for the week because you weren't home, and making the follow up phone calls to the doc's that need to check him to make sure he is recovering properly. Soooooo exciting right??? The best part is when Grayson realizes that he is home and he just looks around a smiles and touches everything around him that he can reach as if he were saying hi to it! It really takes a day or two to get readjusted for all of us. Luke and Will haven't had their mom for a few days and Jay hasn't had his wife, plus we haven't had them with us either. One way I show my love for them is by cookin up somethin yummy. Sooooo mama got to bakin and cookin, baked italian chicken with linguini and lots of cheese, parmesan garlic drop biscuits, salad, and by special request (William) hershey brownies. After a very long sleep deprived week for Grayson and I both its good to be home and back to our normal routine.

Updates on Baby G

We are going home from the hosptal today! We have been in here for three days now, which is so much less time than it used to be, but all test that we were waiting on have come back negtive (YEAH) and he is back to his cute lil self, minus some very interesting diapers lol. Lookin forward to some good family time with my hubby and big boys as well as sleeping on a regualr bed. I never enjoy hospital trips, but it is so good for me to see how much our nurses, docs, and respiratory therapists love Grayson and our family. They are very good to us. Last night I asked for prayer from a whole lot of folks, and today we are going home with all tests results in our favor. It can only be a God thing! Prayer works and I believe in miracles because I get to see them on a daily basis with my kids and our life with Grayson. Remember to thank God even in situations that seem like they are too much to handle. More to come later :) gotta pack up this room to go home!!!!

What a day!

Not exactly how I wanted to spend my summer Monday with the boys, but like i always say things can change quick at the Hill house. I like it better when they change for the better, but today God had different plans for us than what WE had planned. Grayson had been running a low grade fever for a few days so i was concerned that he was catching some kind of junk, so I took him to the doctor and they did a direct admit into the hospital (yuck). So here I sit in a pediatric hospital with my sweet boy wishing they didn't have to poke him, stick him, and give him these big medicines that typically cause diaper rash. I am thankful that he does not have pneumonia, which was the concern when we got here. (I did not think it was that, I thaught it was tummy related and a trach issue)but it's a virus in his lungs and their is no infection in his trach woohoo! The good thing is I am in an actual room now not in the ICU where there is no bathroom in your room and you have to walk forever to get to one. Each time we stay here I just get humbled all over again, it makes you even more greatful for the little and big things in your life. I miss my husband and my kids! Grayson misses them too:) Soon I will post some fun not so serious stuff.

Meet the boys

Well like most kids they are rowdy, funny, silly, sometimes stinky haha, and always ready for some good ole joking on mom. Luke is a typical teenager, he is driving now which is very scary, starting his senior year in August( i am not old enough for this part), and has a very full social calender. William is our almost tweenager, he loves video games and has the most sweetest dispostion of any kid I have ever known. The glass is always half full not half empty in his eyes. Then Grayson is our 2 yr old, (don't think I could've spaced them out any further lol). Grayson has been through more in his 2 years of life than most adults. He was diagnosed at about a week old with Sotos Syndrome. This very rare syndrome has brought a whole new way of life for our family. He has a trach, a feeding tube(aka gtube) and sleeps on oxygen at night. Our boys have learned the true meaning of unconditional love. We are truly a family that has overcome some major obstacles. Grayson spent about 10 weeks in the NICU, then had several lengthy hospital stays after that, and meanwhile Luke and Willam remained supportive, generally happy and very understanding that we had to take care of Grayson and they got pushed to the backburner. Now that we are not staying in the hospital all the time(praise God) they have learned to laugh through the stressful time, and make me crazy and keep me sane all at the same time. God is so good. He purposfully picked my boys for me and WOW I am blessed.

welcome to my blog

I created this blog for family and friends and all the wonderful people in our lives that always are asking "what's going on with the Hill's" and "How do you do it, raising three boys, one with special needs?" My hope is to give a glimpse into my regular family with extraordinary circumstances. I hope you enjoy my posts and my pictures, and i will do my best to give updates as things are always changing around here. God bless you and thank you for taking the time to read my blog.