Wednesday, November 12, 2014

the first 3 days

It is hard to believe we have been in Baltimore for 3 days now! It already feels like we have been here longer.

The Ronald McDonald House has been totally amazing so far. It already feels like a home away from home, and it is very much a haven for when we leave Kennedy Krieger each day. We stayed at the RMDH in Dallas when Stephen was a baby, and I fell in love with it. The one here in Baltimore has been every bit as wonderful. We have had a delicious supper provided for us every night, we have a beautiful, spacious room, we have our own bathroom with tub, we have 2 kitchens to use with tons of our own freezer/fridge/pantry space, we have a huge playroom for Stephen to play in, we have free laundry facilities, we have free tickets and passes to all kinds of adventures, and we have an amazing staff who will help us at the drop of a hat. I am so grateful for that!

Our schedule is overwhelming and demanding, which leaves very little free time except for the weekends. Our days go from 8:30 to 5:00. Stephen has a 1 hour feeding session, 3 times a day. I must be present for each session so that I can watch from the observation room. He also has 2 hours of developmental playroom time each day. Much of the playroom time is focused on behavioral therapy. Then he has a 30 minute Occupational Therapy session, 4 times a week, plus a Speech Therapy (focused only on oral-motor and feeding skills, since his language is great) for 30 minutes, 4 times a week. I must attend most of these therapy sessions as well and watch via the observation room. In between sessions, Stephen takes a 1 hour nap (if he is tired) and has his tube feeding in the afternoon in a room they provided for us. It is much easier if we stay “on campus” all day, rather than try to go anywhere due to traffic and make sure we are on time for every therapy session. I have to fit in time to eat lunch somewhere in there, and I also have required parent meetings to attend with each person on the team (there are a lot!). After the day at KKI is over, I head back to RMDH to do some laundry, let Stephen play, make his food (if need be...I try to make a few days' worth at a time but that is hard to do and entertain Stephen at the same time), eat dinner, feed Stephen, give S a bath, get him down for bed, feed S again, start his feeding pump, and then take care of myself a little bit before I go to bed.

It has been very difficult watching Stephen so far in the feeding sessions. Although he eats certain foods already by mouth, they are starting with getting him to accept the wet foods like applesauce, coconut milk yogurt, and soy milk pudding. He has gagged every time and has refused in every way possible. He had a meltdown today because they do something called non-removal of the spoon, where they hold the spoon in front of his mouth for a certain amount of time without moving it. He hates it. But as his main therapist has said, they expected him to be like this. She said it can take up to 3 weeks before a child accepts a bite if they are averse to spoons, certain textures, and food in general. I am hopeful and believe in my little man. I know they can get him to do it! Anytime he opens his mouth, he receives a reward (time on LeapPad, a movie to watch, a new toy). So far, he has not gotten any rewards. I keep reminding him of all the wonderful things we get to do when he doesn’t need his tubie anymore and the adventures we get to go on while here (aquarium, train museum, zoo, etc…).

Stephen did drink some apple juice, which was a big deal! This was actually with me on the first day. The team watched Paul and I feed him and emulate a normal meal-time at home with him. They provided some foods for him, and we gave him some food that we brought also. He wanted to try the apple juice, and he liked it! He has never drank any juice before. I was SO very proud!!

Paul (my husband) had to leave this morning at 4:30 a.m. and fly home. More than anything, I did not want him to go. :( I miss him so much already. Because he is my main support person, not having him here makes me feel very alone. He wrote us the sweetest letters though. I found them this morning…one for me and one for Stephen. :) I am going to read them everyday.

I am pretty exhausted right now, so I will update again in a few days. I’m praying I will have more good news to share. For those of our friends and family who are praying for us, thank you so very much. I believe in the power of prayer. I have seen God move time and time again in our lives because God hears the cry of His people on our behalf. So thank you again.  

1 comment:

  1. Thanks for sharing your news. It is all so great. He is in some of the best hands of the world. It does sound very tiring. I know God will give you both the strength you need to make it through this. Sending virtual hugs!!