Thursday, November 20, 2014

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!

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.  

Monday, November 3, 2014

leaving for Baltimore!

It is so hard to fathom that in just 5 days, we will be leaving for Kennedy Krieger Institute (KKI) in Baltimore, Maryland, for Stephen to begin the 2-month intensive feeding program there. We are leaving earlier than planned so we have time to visit a friend on the way and have time to rest and rejuvenate after the long drive before Stephen starts therapy.

I'm such a crazy mix of emotions right now. One minute I am so excited for my little man, and it feels surreal that we are FINALLY getting to do this! The next minute, I feel my heart plummet just a little bit and think "oh my word, what is happening??!" In my heart of hearts, I know that this is the right thing for Stephen. I am so grateful to the people at KKI for accepting Stephen into the program, for believing that he has the ability to eat and be tube-free, and for the way they have worked with us so far on everything to get him there! 

At the same time, I am scared about what this really entails. 2 months is a long time to be away from everything and everyone we know. I'm worried about being away from my husband and Stephen being away from his Daddy. I'm worried about being lonely. I'm worried about being totally overwhelmed and exhausted. I'm sad that we won't get to be home for Thanksgiving or Christmas. Also, it is going to be hard work for Stephen. I'm worried about him hating it. I'm worried he'll want to give up. 

But I am choosing to focus on the good that is going to come from this much good! I am trusting God to bring so many blessings from it. I know that His presence is with Stephen every step of the way, and that His strength will uphold Stephen no matter how hard it gets. I keep remembering how long we have waited and prayed for Stephen to be ready for this, and God has been faithful in providing up until now. He is always faithful, so He will keep providing. I am fixing my eyes on that. Jesus has been good to us in a million ways. Without Him, I know I couldn't get through all we have been through!

So, here is a little bit of a run-down of what I know so far. Stephen will be in therapy all day long, with several breaks, 5 days a week for the 8-week period. They will be focusing on getting him to accept more foods, to learn to drink more than just water, to improve his chewing and swallowing skills, to drink/eat a greater amount/volume of food, and to lessen his tube-feedings as he eats more orally. They will also work with him on his fine motor and gross motor skills, just as his therapists do here at home. The therapy is rigorous and taxing, but the therapy team is patient and professional. I keep reminding myself that KKI is at THE TOP of the list of places for Stephen to go! It really doesn't get any better.

We are staying at the Ronald McDonald House now. Originally we were going to stay at the hospital; however, after everything changed with our insurance, the program is a lot less expensive for us to not stay inpatient. To me, this is a blessing, because we will have our own room with privacy, there are 2 kitchens where I am able to make Stephen's food, we will have the ability to participate in the fun events at the RMD House, and thanks to all of the wonderful people there, many of my meals will be provided and I won't have to eat hospital food all the time! RMD also provides free tickets to many fun adventures in Baltimore, so that will be perfect for the weekends when we really need to get out. All in all, I am very happy we get to stay there!

My Mom came over this past weekend to help me with lots of stuff around the house. We got so much done. I still have a lot to do, but my Mom works harder than any woman I know. It is nice to not have to prepare for this completely by myself!

Please pray for safety in traveling, for me to remember everything I need to bring, for Stephen to have an easy time with this huge transition, for God's peace to overflow, and for my heart as I'm away from my hubby. Pray for the team at KKI, for the therapists to know exactly what Stephen needs, and for everything to go smoothly. 

Finally, thank you to everyone who donated and helped with the Yard and Bake sale, those who bought an awesome t-shirt, those who helped with the Chicken-Spaghetti fundraiser, everyone who purchased the spaghetti, and a BIG thank you to several specific people who gave straight from the heart and allowed God to use you to bless us financially. We are utterly grateful for all of you! God bless you!

I will update again soon! :)

"So be strong and courageous! Do not be afraid and do not panic.. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you." ~ Deuteronomy 31:6 (NLT)