focal points and time

I used to be an avid dancer. One of the very first things I ever learned was that, in order to twirl and spin for a long period of time without getting dizzy and falling over, I had to find a focal point. It could be an object, a dot/line on the wall, a person, whatever it was that I could focus on in order to stay in one place.

Right now I feel like a ballerina spinning over and over again. Some days I feel like I’m about to spin out of control. Thankfully I am able to keep going because of my focal point – Jesus. Without Him, I would lose my balance and fall. I don’t know how anybody does what we are doing day in and day out (or anything difficult in life for that matter) without a relationship with God. He is the One guiding us, giving me strength, and giving Stephen the ability to succeed!

Our days are very long and exhausting, and I think my greatest enemy right now is time. It seems like there is never enough time in the day. But somehow, someway (or, really, because of Someone), we are managing.

Stephen is doing SO well right now with eating! I really can’t believe the progress he is making! It is still very hard to have all of the demands on him. As I wrote in the last post, Stephen’s main feeding therapist used the non-removal of the spoon technique every session with Stephen last week. In the beginning during his assessments, she had tried getting him to take a bite of applesauce to no avail. After realizing that would not work, she talked with the team about getting him to accept an empty spoon first. I thought this was a great idea, because little man has always hated spoons, as well as other utensils. For the past 4 years, his therapist at home has tried to get him to accept a spoon with an open mouth, and so have Paul and I. We always felt like we could get him to eat more by mouth, especially wet foods like fruits and veggies, if we could get him to take it on a spoon. But his aversion kept him from doing so. He has NEVER allowed a spoon in his mouth, with or without food.

Well, on Friday at “dinner” last week, we had an awesome, awesome breakthrough! Stephen accepted the empty spoon 5 times!!! This means he willingly opened his mouth and allowed the therapist to put the spoon in his mouth, and she was able to draw it back out with his lips closed around it. Even though there was no food on it, he didn't gag, cough, choke or scream/cry/beg for Mommy! I cannot tell you how amazing this was to watch. I have never seen my little boy, who is over 4 years old, willingly open his mouth for a spoon like he was taking a bite of food. It was like watching a movie of him at 6 months old, doing what a typical 6-month old would do. Just incredible to me!! When I told Paul on the phone, he was stunned and could not believe it.

On Monday, Stephen willingly accepted the spoon again all day! They also did dips of applesauce on the spoon, which was just a tiny amount. He accepted it 4 times at lunch and 5 times at dinner!! We even finished therapy early because he did so well.

Yesterday (Tuesday) was basically the same thing as Monday with the applesauce dips. He did gag a little bit, but not too bad. However, he did not have a good OT session. He gagged until the point of vomiting (but thankfully nothing came up when he tried to throw up). The therapist is working to desensitize the gagging and help him get past it, so that when he does start eating more, his gag reflex behaves normally. He has always had a hypersensitive gag reflex. I am praying so hard that he can overcome it!!!

I also had a meeting yesterday with the Behavioral Therapist who works with Stephen in the developmental playroom. Stephen has had a hard time dealing with so many changes at once, and it is definitely affecting his behavior. He’s had a lot of meltdowns and is so clingy to me that some days I can barely wash the dishes we use before he comes unglued. Anyway, the therapist has been giving me lots of great tools and ideas to use with him outside of the developmental playroom, many of which they use with him in there effectively. She even made him a cute little activity chart so that he has a visual of things he can do while Mommy is busy with other tasks. He needs a LOT of love, reassurance and attention right now. So again, time is my greatest enemy. I wish I didn't have anything else to do except love on him.

Today (Wednesday) was another successful day with “eating!” Stephen still did the applesauce dips all day long and took them willingly each time, with not too many gags. They are making sure that he is ready to move forward with more food on the spoon before they try it. We don’t want any regression. He also had a better OT session today. He did really well with eating some freeze-dried bananas. One thing they do is make it fun, which Stephen likes. I told S I was super proud of him; he told me he has “tree frog powers” and then he started climbing/walking on the floor like a “red-eyed tree frog.” My kiddo loves the ocean and frogs. Combined with him looking just like me, I don’t think anyone could ever say he’s not my son. :D

Speaking of liking oceans, I took Stephen to the National Aquarium on Saturday! We had a great time. It was a little nerve-wracking because it was just me and him, and there were a ton of people there. I was scared I would lose him in the crowd. But that did not happen. I can't wait to take him back! :)

Well, I need to get some sleep. We are taking things one day at a time and going with the flow. The team is focused on baby steps with him and building up from there. Each day I feel hopeful and excited for Stephen. He is the bravest little boy I know, and I am in awe of how much progress he has already made! Thanks to those of you reading and praying for us. We still need much prayer!