Warning: This post is a little long so you might want to refill your coffee and find a comfy seat.
As most of you probably know, Ethan and Addison have been in weekly therapy over the past year to help them developmentally. We LOVE all of our therapists and are so grateful for their hard work. We have seen tremendous amounts of progress over the past year in their development, especially in their gross and fine motor skills. Addison has been doing so well that she was DISCHARGED from physical therapy a couple of weeks ago and she is very close to being discharged from occupational therapy. Ethan is very close to being discharged from physical therapy, but his fine motor skills are still pretty far behind so we actually added another weekly therapy session for him. All in all they are both making steady progress in catching up to their actual age (now almost 18 months).
Then comes feeding. This is always my struggle, and theirs. I struggle mentally to make myself go through the meal process. I struggle with my attitude towards their constant rejection of food. I struggle with encouraging them to eat when I know they're likely to choke. I struggle with feeling completely inadequate when it comes to feeding my kids. God and I talk about this a lot...mostly me complaining and Him calling me to patience and obedience. This is what God desires for me to lay at his feet and not stress over. I have absolutely no control over this, and I am always needing Him to challenge my heart with surrender.
I really began evaluating the progress we've made earlier this month. After being home for a year, attending weekly therapy sessions, and attempting to oral feed at home I find myself thrilled if Addison eats 5 puffs and Ethan eats 1 gold fish. Not so encouraging. I began researching and asking around about feeding clinics and I have discovered that there are intense, focused feeding programs aimed at helping tube dependent kids.
One of the leading institutes in this field of study is Kennedy Krieger Institute, located in Baltimore. With an 82% success rate, their program is 6-8 weeks of several therapy sessions and day, as well as parent training. I called and gave them our initial information, not expecting to get in right away and not very confident that our insurance would cover much. The woman I spoke with was so patient with me as we went over tons of medical history and I asked about a thousand questions. After several minutes on hold she came back on the line and was very excited. Our insurance will cover the cost of the outpatient program COMPLETELY and they have an opening for an initial evaluation at the end of June!!
So, needless to say we're very excited about the potential, but also nervous. Right now I seem to have more questions than answers about the program, and one way to get answers is to go meet the staff, see the facility and ask our questions. We are praying and desperately seeking guidance as to whether this is something the Lord has for us.
Just a little (long) update about what's on the horizon for us.
Journeying On,
