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.