Raymond had an appointment on Friday with Dr. Williams at the feeding clinic in Hershey. Grammy came early and stayed with Isabella and Lily so I could take Raymond alone. He was a good boy and held my hand and stayed right with me the entire time.
Raymond has not been doing well with feeding. He had been doing well, then caught a virus before we went on vacation. That really seemed to knock his progress back leaps and bounds. Lately, Raymond has been letting any small amount of food I give him pool in his mouth. Before getting sick, Raymond would at least attempt to move the food around in his mouth. Now he isn't. He is still very interested in food which is a good sign.
There are two main types of feeding problems I discussed with Dr. Williams. The first was behavioral, which is most common. The second is simply not physically being able to eat. Raymond suffers from the second. He is worried, however, that this physical inability to eat may turn into behavioral feeding problems if not managed. Dr. Williams said he's never had a patient so willing to participate in the process. Raymond wants to get in the high chair and he tries to put the nuk brush in his mouth. The poor kid's body just doesn't know how to appropriately respond to the food. So collectively we have decided it would be in Raymond's best interest to go into an intense inpatient feeding program. Because of his willingness to participate, Dr. Williams feels Raymond might be able to finish the program in as little as 4 weeks. The extreme end of that would be 12 weeks. I'm also confident that it won't take long to teach Raymond's body how to respond to food. The only concern that Dr. Williams has for Raymond is drinking liquid out of a cup. That and chewing will be our biggest hurtles. We will still probably need to utilize Raymond's G-tube even after the program so he doesn't get dehydrated. It will be wonderful to give him real food!!!
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I hope everyone had a wonderful Mother's Day. Isabella came to my work with Daddy to take me to lunch. She also made me such an adorable card. Inside she wrote, "Your smile is as sweet as pudding." What a cutie!
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Our house has been busy as usual. Miss Lily is walking all over the place. She is so cute!!! She is very proud of herself for being able to get up and go. These last few days she has been walking more then crawling. Lily also loves to have books read to her. I love when she scoots over to me backwards and plops down in my lap with a book. Lily and Raymond are so funny together. Last night the two of them laughed for hours. It's nice to see them play together. Sometimes Raymond is a little rough with Lily. He tries to hug her too tight and right around the neck. He's getting better though. Lily is very quick to let Raymond (and everyone else in the room) know that she doesn't like what he is doing. Lily is a screamer. She's very sensitive. Seriously. Just typing that makes me laugh. She cracks me up!
Raymond has been doing well. He's been really trying to vocalize and talk to us. I think it's so cute when he takes his little play cell phone, holds it up to his ear, and says, "Okay. Bye!"
He's very adventurous and attempting to jump off of everything and anything. It's funny to see the difference in boys and girls. Hopefully Lily doesn't decide to try to jump off of everything too. She, as of right now, is much more cautious then Raymond. Raymond also really likes "Mo", a.k.a. Elmo. Every time we turn on Netflix, he yells, "Mo!", claps and points at the TV. When we were at Joanne Fabric's the other week he saw yellow fabric with Elmo on it and was so excited. I want to go back and buy some to make him a pair of summer jammies. We also bought Raymond a twin size mattress. I have mixed feelings about it. Raymond is at the point where he's really too big for his crib. Especially since he can crawl out of it and normally hurts himself doing so. The problem with a regular bed, is that he doesn't understand to stay in it. We are planning to cut the door about 3/4 of the way up so we can see in his room and turn the handle around so it can be locked from the outside. We don't want him to come out at night and hurt himself. I worry that he will fall down the basement stairs. The door is almost always closed but sometimes we forget. That would be the night he'd come out of his room looking for someone. The biggest problem (in my mind) we face with Raymond thus far, is that he doesn't understand cause and affect. For example - If a child goes in the kitchen and puts their hand on a hot stove top and burns themselves, typically they will never do it again. Replace Raymond in this scenario. He would burn himself then go back out in the kitchen and do the same thing all over again 5 minutes later. That is one of the reason's we are desperate to get a fence. He would run right out in front of a speeding car. He knows it's a car and sees it's going fast but doesn't understand that if he gets in front of it that it will hurt him. Grammy can confirm that. We can't afford a fence right now but hopefully we will save enough soon.
Isabella has nothing but fashion on her mind. She is always creating designs. I recently bought her two prom/bridesmaid dresses at a garage sale for $3. They are too big for her but she was thrilled to have them and enjoys typing or pining things on them. I'm pretty sure she is going to be a fashion designer. She has a tie-dye kit that she can't wait to use. Maybe that will be a good project for this weekend. I also bought (a while ago) a thing that will attach jewels to clothing. I haven't shown it to her yet because I know she will become obsessed with putting jewels and gems on everything. It's coincidental that I bought it so long ago and now she loves that type of thing. (It was 90% off on clearance at Hancock Fabrics)
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The weather for the most part has been nice.
Everyone has been happy to go out and get some fresh air!
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| Lily wanted to go into the flower bed. |
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| This is the best picture I took of Raymond outside. The kid never stands still! |
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My grandmother was diagnosed last Friday with an inoperable brain tumor. I found out today that it is malignant. Please keep her in your prayers.
I'm heading to West Virginia to stay with my nephew for a few days. My brother is in the hospital and I don't want his wife to have to worry about Alexander too.
I'd appreciate prayer's for my brother too.
Until Next Time!
Lots of Love,
