Moms first post...The good,the bad, the ugly, the beginning of the new Kleefstra journey

Hello name is Michelle .... This is our journey.... Liam was diagnosed last year, and I guess it is safe to say I am still processing the thoughts of what does this mean for my little Liam. I've had many nights of crying ... many days of wonder. But I have also had many new eye-opening experiences since his diagnosis some good some bad. I've learned that life is shorter than I realized. I've learned that everything is worth giving a little more time so you can enjoy what is taking place. I've learned to love a little more deeply. I realize that with his diagnosis there is no definite what if for tomorrow. I know you are saying that is true for all of us ... But when your son is diagnosed with something that a lot of the others don't live past their teen years it makes you look at your son and realize ok... I am going to take more pictures, I am going to make sure you get to go more places, do more things. ENJOY the time a little more with every breathing moment you have! So, we have done just that. We are unable to get help from pretty much ANYONE! So, we feel alone a lot of the times. (not a pity party here just stating the "REAL" truth of special needs ) We have lost some friends & Family... BUT it is their loss and on a positive we have GAINED a lot of new friends thru the Institute Of Human Achievement and Doman International and Family truly can be chosen. (NOT SAYING I DON'T LOVE THE FAMILY THAT IS SUPPORTIVE !! :). My special needs family is the group of people that truly understand the sleepless nights, the programs, the processes, the ups, the downs, the ins and outs of what it is like to have a non-verbal, or even immobile child. We have new specialist in Tennessee, Boston, and Philadelphia so Liam is getting to see states / countries and explore. He might not remember all the travels and what he has or hasn't done but we have captured and enjoyed every moment of every day with him from the good and the bad days! (which there are way better than bad) Liam is the biggest blessing! He is loved! he is happy, and he has so many fabulous people who adore him. Just wish we were a lot closer to some of them. Over this year we have been to Boston for the Kleefstra Conference and met the fabulous Dr. Kleefstra. She is from the Netherlands and is one of the kindest, caring and compassionate people I've met. Her heart is for Kleefstra and learning more about it and how to help Kleefstra kids. As of today, 12/5/2019 there are less than 500 kids in the world with Kleefstra...But that is on another part of this website...While in Boston we visited some other places nearby to give Liam more life experiences. We have traveled to Tennessee where we have found a great speech therapist to work with Liam. she is part of an organization called she is a really nice lady and gave us lots of hope. She told us that she thinks he is already reading, and he will talk just might take a while. We traveled to Philadelphia April and went to a conference to learn how to help Liam of course it was a lot of information and very overwhelming we came back a bit in a a fog from the cramming!!!! WE came back and didn't know where to start but knew we had to do something and that this was our hope. I started sharing information with our local doctors to sign off on things and get blood work for Liam. WE made an appointment for full evaluation but the soonest they could get us in was October, so we waited!!! IT was a long wait but gave us more time to process the information we received. I couldn't get any of Liam's local doctors to help us with signing off on some of the items for the institute, but they apparently are used to that and helped us with their doctor. I had to get lots of blood work, but it was all really good. Liam’s Labs other than vitamin D were GREAT! The institute has started him on lots of vitamins, bone broth, masking, and lots of exercises. His running goal is 100 yards by our visit next March. I think he can do it, he just didn't like being pushed to run there! He is a RED head! Stubborn. I have 3 of them lol... I have taken him off of most dairy now they are really strict about diet and vitamins and don't want our brain injured kids on medications which I LOVE! When we got back, I have found an excellent doctor close to home willing to work with us and the institute, so we have a little local support in case of a reaction which so far we are blessed. So, having a kid with Kleefstra you learn another thing... NOBODY HAS A CLUE WHAT KLEEFSTRA IS!!! nobody knows how to treat your child and to be honest in this busy world it is hard to find people who want to take the time. Every new doctor you have to teach, every visit to ER / Hospital you have to Triage so to be honest not worth the trip... Just watch them, know them and learn them ... I have learned a lot .. I don't bother doctors I ask as little as I have to and only when I have to and realize my research and learning my child is the best thing to keep him healthy. Doctors help me with vitamins, dosing and if he absolutely needs medication but other than that we are on a learning journey into a medical world just us and the few people we are meeting that want to learn about him. So, first thing .... his body temperature is 96.4 (not 98.1) so his normal is 96.4 so if he has 98.9 he has fever! PERIOD! When he gets really hot his face turns red, but he DOESN'T sweat! yup that is right very little perspiration from this little guy ... so we have to watch him. His kidneys are good we are blessed there.... WE found a great cardiologist in Temple and she read up on Kleefstra so nice!!! he has a small PFO in his heart normally it closes on its own by now but his is a little slower. I have learned with Kleefstra everything is just SLOWER!!! Delay is a normal word in our everyday vocabulary! But Guess it was Gods Way of making me slow down a little!!! All and all he is pretty healthy! When he catches something, it does take him a little longer to fight it off but he doesn't catch things very often anymore. Unless it is from an immunization ... he received the MMRV and we got the Measles Rash and chicken pox bumps (he has already had the chicken pox too) So needless to say there is a possibility his body doesn't metabolize the immunizations that is a test we will run when we do our next labs. Our doctor was great and had us give him Benadryl to help with the reaction and Phenergan to help him not be so nausea since he wasn't sleeping. But after 17 days we are back to our normal 10 plus hour sleep nights and playing as hard as he can during the day.
So needless to say this is my beginning of my norm! This is our new life! Am I upset ... LETS be real if a doctor told you that your child would never go to prom, drive a car, live on his own, or could die before they were 14 would you be upset? YES! But ... in the turn of all of this i realize OUR life (Chris and Myself) changed... Liam’s didn't he is the same beautiful, smart , precious, loving, kind, full of life little boy he was before the big KLEEFSTRA... now we have to take what we are learning and teach, love, and help him be more than what doctors tell us he can be!!!! we are blessed... He is an amazing child and I feel blessed/ honored that God Trusted me with him.... I will be honest I wonder why I was chosen often. I don't feel I deserve him sometimes b/c I don't feel I am cut out for the journey we are on but I know there is a reason and I will keep on doing the best I can until my purpose, reason, or whatever is shown! I just have to trust Gods plan and know it is in his hands... We will survive and Liam will be more than what they say!!! MARK MY WORDS!!! We will fight and prove Kleefstra is nothing more than a label!

I will be updated as we go…. I am new at this blogging but will do my best .