Adan over the past several weeks has made remarkable improvements. A little over two months ago he could not sit up by himself and now he close to walking! As far as the Physical Therapy is concerned he is on track with the exception of using his “pincher grasp”. The next step for him will be to walk (he just started to stand on his own a couple weeks ago) and he is close because he can walk with a walking toy.

We are still working on the eating and sensory issues that we are having. Adan is getting much better with eating different textures, and he can also eat some toddler foods now. We are almost completely off the bottle now (only one when he first wakes up) and he loves almond milk, juices, and water. I have found that he even loves the little snack packs (the pudding ones) and I will let him eat one of those every other day for a treat. Having a child that is Gluten free is not that challenging and I am glad that I am sticking with it and creating healthy eating habits for him.

Adan is trying to talk more and we are going to enroll him in additional Speech Therapy, Occupational, and ABA Therapy. He will get some from his early intervention from “Babies Can’t Wait” but also from some other sources too. We feel that it would be best to be as proactive as possible with the therapies. We also believe that it would be in Adan’s best interest that if he received as much as possible because it will not hurt him and if anything it will help him get further ahead of the game.

Overall, we are so pleased with Adan’s improvements and look forward to watching him grow and change every day He is still our little sunshine and the greatest blessing in our life. We are so thankful for him and all the things he teaches us every day.

In Adan’s therapy we are working on eating/texture and sensory play. I will try to be as detailed as I can so that everyone can learn as much as I have the past several months in our therapy sessions.

The First thing we are working on is eating, because Adan has a hyper active gag. This means that he has sensory issues with feeding and when a texture he doesn’t like enters his mouth he throws up. This issue with textures he has with foods has stopped him from being able to eat solid foods. I choose to make his all his baby foods because it is healthier, and because I can make all foods a smooth texture that he will eat. Adan cannot eat meats so I have to substitute other forms of protein and things to make sure he receives all the nutrients in his daily diet. He is also still on Soy formula to help provide the additional vitamins, fat, and protein in his diet.

Angie, Adan’s therapist explained that if children are not comfortable putting their hands in a texture then they will not put it in their mouth. She gave me a long list of things to do with texture play to help him desensitize him to all the textures. Some of the things on the list are playing in a tub of dry rice, playing with Play-Doh, a NUK brush, a Textured spoon, to name a few. Below are some pictures of the things I listed just now.  Playing in the Play-Doh made Adan gag many times before he was able to get “used” to the texture of it and play with it. The dry rice he liked and played with that for over two hours. First, I put some rice in a bowl and let him play in it, and when he was used to it I graduated to something larger. I put him in his baby bath tub and filled it half way full of rice and placed him in it with clothes on. After he was very comfortable playing in the rice I would slowly remove one article of clothes until he was down to his diaper. That was he was able to get the full feeling of the rice texture all over this skin. The NUK brush is a chewing sensory brush that is rubber and the kids can chew on that instead of their hands, and you can dip it in food and they can get used to eating food off of it too. It is an amazing little tool and Adan loves them. The Textured spoon is plastic and has hard ridges at the bottom of it so that the hard texture rubs their tongue every time they take a bite of food. This helps them desensitize their gag to different textures in their mouth.

The exercises that we do are working on building core strength in his body. You have to have strong core strength to be able to sit upright and to chew and swallow your food (according to Angie and books). One way we do this is I will sit him down and lay a toy down on his right side and make him grab the toy with his left hand, and then do it again on his opposite side. This builds his side core muscles, and helps him sit and support himself while he is eating. He eats now with side support so that he can focus on eating and not trying to hold himself up. Another exercise I do is holding his hips and legs off the floor so that they are parallel with the ground and make him walk across the room. This builds his chest muscles and arms and also helps him build his core. These exercises will also help him stand, walk, and many other things as well.

Angie has also encouraged me to get him off the bottle because sucking a bottle only encourages the tongue to go back and forth. A sippy cup and a open cup makes him build his tongue muscles to work in different ways and even his lip muscles have to work to hold the liquid in his mouth. He is doing well with a open cup and sippy cup and the bottle will be less and less as time goes on. Another mouth exercise we do with him are sounds that he can make with his mouth closed. For example, Mmmm, Baba ,Pa Pa, are a couple.

Those are the lessons we have learned in therapy this past week and will post more notes this coming week. I hope that you all learned something helpful, or if you have any questions please feel free to contact me to ask.

     On December 22, 2011 I gave birth to by healthy, chunky, little boy at 1:43 in the morning. That moment in time when my son was placed in my arms will forever be frozen in time in my mind that I will forever remember. I was so happy, but so terrified at the same time. I was filled with doubt about what the future would hold for us as a family, and more importantly what it would hold for my little angel. I knew he had Fragile X (through a DNA test while I was pregnant) and I had no idea what to expect. The doctors that were there did not know what to expect (my doctor had to Google Fragile X to find out what it was). I decided soon after that day that I would stop worrying about the Fragile X and simply enjoy having my son. Learn about my son as an individual and not put limitations on him. I would treat him like a "normal" infant and when we hit a bump in the road we would address it.

    One year later that has worked out great for our family! My son is very bonded with myself and husband. He is such a warm happy content baby filled with so love. We started an amazing program called Babies Can't Wait when he was 4 months old. That has helped him a great deal with all types of advice, therapies, techniques, ect. Currently, he is in speech therapy, physical therapy, and in July he will begin ABA therapy. Adan is also Gluten, Casein, and Dairy free in his diet. I make all his baby foods because he has a hyper active gag reflex (throwing up is a daily thing in my house). I hope that with all the therapy he is getting that he will soon be able to eat solid foods! :) He has some small texture issues that we are working through by playing with different textures. We let him play with dry rice, play dough (which made him gag several times before he would touch it), and numerous other tips from my therapist. They seem to all be working great because I can tell a great improvement with him already. Adan also sees a Chiropractor once a month! He could not sit up by himself until he was 9 months old because his legs were so tight and he would fall over. We were doing so much physical therapy with him and we couldn't figure out what was wrong. On a suggestion I took him to this amazing lady and his hips were completely off, his leg bones were off, his neck, and back. After she adjusted him (with her pinky fingers) he sat up unsupported that day and has been trying to walk ever since then! She also showed me how to drain fluid off his ears to reduce his ear infections (Fragile X babies are highly prone to getting them).

    My son Adan is a wonderful happy, healthy, curious, hyper, messy, baby boy who doesn't slow down, and I love every second! My son is an individual who is teaching us about his own unique needs and how to best teach him and help him as he grows and changes. When people see him I want them to see Adan not the Fragile X. I strongly believe that by being open and talking about it is a part of Adan, but only a small part of his very large personality. It is also my desire to help others by sharing what we are doing and going through. I had no idea what to expect when I was pregnant and I was so scared. By offering this site it allows you to see what you can expect somewhat and get some encouragement.

    Having a child with Fragile X is an amazing blessing because you cherish every little thing and take nothing for granted. Every smile, or new thing they discover is an amazing accomplishment and I would not change one single thing about him. God blessed me with him and I am so very honored to be his mother and to take care of him. I am also blessed to have such a wonderful partner that gives us both such support and love every day. He adores Adan and judging from all the slobbering kisses Adan adores his daddy. God is good, and has blessed my life much more then I could have ever thought.