"Having children with special needs is heart wrenching, faith building, and teaches you that you can do things never imagined”.
Since Lincoln's birthday a few weeks ago I've been reflecting a great deal upon this past year and all the trials and blessings that have come our way. It has most definitely been one of the hardest, if not the single most challenging year of my life. Yet at the same time, there is no way to deny God's hand in most every single detail of Lincoln's life so far. I'm amazed at the pick of doctors and therapists that we have been blessed with. We have had nothing but positive experiences from them all, and although most of them do not know each other, somehow many of them have turned out to be connected in one another's lives. Time and again the opportunity to meet or work with one therapist/doctor has then lead us to another fantastic opportunity or therapist. And although I'm discovering what it truly means to be my child's advocate, and how hard it is to be his case manager, I love that every single person who has met and worked with Lincoln has the same goal in mind: to help him! He's a pretty tricky little puzzle, that we are all trying to fit the pieces together to see what works best. And although when a therapist recently used the word "complicated case" to describe him (and then most likely saw actual steam coming out of my ears), it's true. He's a complicated little puzzle and really since no one knows just quite what to do with him, or how to make him tick, I must rely on the Lord to guide and direct all of us.
This post is mostly for me, to remember all the incredible people who have helped guide us through this past year, on this crazy journey since Lincoln was born. And there are just details that I have been remembering lately that I don't want to forget. And so feel free to skip over this post if you choose! It's boring.
I find it impossible to say that we have just 'happened upon' some of the most fantastic doctors and therapists in the medical field. I believe that each and every person who has worked with Lincoln in this past year is no coincidence. And I so wish I had taken pictures of all of these amazing people who love Lincoln oh so much!
Jenn is our feeding therapist from Children's hospital. The person who recommended that very first swallow study, and validated my concerns that something was just not quite right. She will stay in my heart forever and I am truly eternally grateful for her incredible knowledge and ability to work with babies and families like ours. We met her when Lincoln was just 2 weeks old, and I still stand firm in saying that she was an angel sent from heaven. This past week my belief in this was reassured once again, when I learned that the new recommended time to keep babies on NG feeding tubes is 2 months. It use to be 6 months but now they are finding that the actual structure of children's throats are changing and being damaged when having feeding tubes in that long, significantly affecting the way children orally feed for the rest of their lives. When Lincoln had his tube in for 2 months he failed his second swallow study, showing that he was still aspirating on liquids. The technician recommended keeping it in for a few more months. Jenn however subtly and 'off the record' told us to take it out. We did. At the time, he had had it in for two months. And he has not been sick once since then, due to aspiration. Multiple professionals pushed to completely remove all of his oral feeds when on the feeding tube but Jenn said NO. And so they agreed to let Lincoln take 1 oz, 4 times a day, orally through a bottle, yet made sure that we understood that was very risky. Jenn stood firm because she did not want Lincoln to loose his suck reflex. Multiple doctors were also pushing to put a g-tube in (feeding tube that goes directly into the stomach), since he kept pulling his NG tube out, and wasn't gaining the weight they wanted. But again, Jenn said NO and I strongly believe that if she hadn't been working with us, and helping Lincoln learn to orally feed correctly, Lincoln would have a g-tube in right now. Thank you Jenn!
Katie is the physical therapist (PT) from our early intervention center (Kindering Center) that we love, love, love! Since I've worked with multiple PTs in my jobs I was nervous about getting one who I would really respect and seek help and advice from. But Katie has been fantastic. She cares so much and it shows through her work with Lincoln.
In the beginning Linc didn't qualify for occupational therapy (OT) through our early intervention center, so I took him to the clinic that I work at, MOSAIC Children's Therapy Center, and since I know every OT that works there I hand-picked Darlene, to work with him. She continually sheds light on many of Lincoln's sensory issues and helps me to understand why he moves and does the things he does. She's also the one who, when I told her we weren't sure what the future holds for Lincoln, replied by saying, "Well then, his potential is limitless." She continues to believe in him and his potential. And really, I'm not sure he needs those positive thoughts and reminders as much as his mother does. She often lifts my spirits when I'm feeling down.
After a few months of feeling sorry for myself, that I somehow got a child with special needs, I realized that I had now been in the field of special education for almost 10 years and knew the resources I needed to help prepare Lincoln for a successful future. Duh! So, I got to work and put things into place for him. There is an amazing therapeutic equestrian riding center near by that I knew had a long wait list. I called when Lincoln was 9 months old. I was informed that the wait list was about 2 years long, and that it would be perfect timing for Lincoln, as they usually take children around the age of 2 1/2 to 3 years. I was inspired. I was also able to get him scheduled to work with an incredible OT who is well known across the country, Rosemary White.
There is also a fantastic feeding therapist in the area who I had wanted to get Lincoln into see and that was lined up all because Katie, our PT suggested we go to an intensive 8-day NDT training course down at the Children's Therapy Center in Kent. The feeding therapist turned out to be the one who arranged the entire course we signed up for, so connections were made there as a result. It's been a difficult year but we are blessed. And Lincoln lights up our life!
