Feeding Clinic

Today Eric, his lead therapist, the psychologist in charge of his care at the CHW feeding clinic, and I had a meeting. We are working out plans to tackle Eric's oral adversions and his rigid feeding behaviors. We are going to start with getting him drinking from a sippy cup, an open cup or a water bottle (B, the senior therapist's idea). We are also going to try to get him to hold a spoon. This don't sound like much, but for Eric it's a lot. With the therapists and I working intensively on this every day I think these are realistic goals. I have a bottle of water and a spoon out on the dining room table now, and they are also in front of him at every meal. When he got home from school he kept handing both items back to me. I would give them right back to me. Once we can get them in his hand, we will then try to guide to his mouth. We will all meet again in a month. At that appointment we will do a feeding right there, and bring videos of sessions done at home. With that we will brainstorm ideas and make plans from there. Hopefully this all works. Dr. F brought up the possibility of another inpatient stay, but does not think 2 weeks is going to be enough time. They would have to force the issues and it would not be pretty. It is best not to put anyone through that tourture. The other option would be to bring him to the Kennedy Kreiger Institute in Baltamore. They have the best known inpatient feeding program. The problem with that is that it is 2 months long. I have no idea what I would do with my other 2 kids during that time. Even 2 weeks at CHW would be really hard right now. We really want to do this outpatient if possible. I think it is realistic if it is kept up on. Although I have the spoon and the water bottle out, explained to the line therapist what this was for and what to do with it. She coninues to have him do rote imitation of words. It is 1 hour into the session and he has already lost interest. Sigh...I did my rant about this in my last post so I will spare it here. Don't get me wrong, I am thrilled with the progress he is making verbally. These other issues have to be resolved for him to continue to make progress all around. I will be so glad when this up and down stuff settles down. This is going to be a long hour and a half.

Various Random Updates

We are back to having therapy on a daily basis. That is a good thing because the pressure is on to get up to hours by next month. At this time Eric is not tolorating much more than 2 hours of therapy a day. That is going to be an issue when he needs to get the 20-35 hours a week. There are not enough programs fully developed to keep him busy. He loses interest really quick and pays them no mind after that point. He is doing great with learing words. I am very pleased with that. For him to make that much progress that quickly I am confident this provider can do what needs to be done for Eric. There are some concerns however. Everyone on his team are either in training or just finished training for their jobs. We already lost a line therapist that was on his team. The turnover on these jobs is high. I honestly don't know how much guidance the senior therapist is getting. When the lines are here they tend to do the same programs over and over again. There are so many ideas but none are developed. The line therapists are having a hard time finding things for him to do. These sessions are dragging, for both him and me. There is no way he is going to reach hours at this rate. Today I just got his schedule for the week. Written, set schedules have been spotty to say the least. It is driving me nuts not knowing when to expect people in my home. Eric needs the consistancy and the routine too. Apparently this has been set for good now, we can hope. There is a bedroom cleaned out for them to use upstairs, to help with the distraction from his brothers. This was requested about a month ago. They have yet to go up there. All they have to tell me is what toys/supplies they need. The county case worker has expressed all of these concerns with me and the provider. I see a meeting in the future to discuss all of this. This organization has a very good reputation for providing quality services. I know they are overwhelmed with the number of kids and short staff, but it has to start going better than this. Hopefully all of this can be resolved soon.

Eric has an appointment at the feeding clinic tomorrow morning. His senior therapist will be attending with us. The psychologist in charge and the therapist are going to work on food tolorance programs. This way everyone is on the same page with this particular treatment. At school he is starting to touch more food items, and they are saying he is not nearly as resistant. Now if we can get it past his lips, that's another story. We shall see.

Eric's Haircut

We made it through. Eric's therapists were going to come to observe his behavior, help us through this and give us suggestions to make this easier for all of us. Unfourtunately the community outing form was not submitted to the county in time so they could not come for this one. Now that this has been approved they will be able to attend with us for the next 6 months and still get paid. Eric's baby brother Jon also got his first haircut at this appointment. He did great. Eric was well, Eric. His head is so sensitive. He don't understand why this has to be done and that it won't hurt. It is just tourture in his mind. I got a workout just getting him into the room and the chair with me. He is over 50 lbs and when he is upset and don't want to do something he just falls to the floor and dead weights himself. It is very hard to grab him and lift him without hurting myself. Once I get him on me I have to wrap my legs around his so he don't kick everyone and hold his arms so they don't get in the way. There is a second stylist that holds his head while the other uses the clippers to buzz him. Even with holding him he still kicks, hits and scratches. He screams and cries so much it attracts attention. It hurts me to hold him. I usually leave sore, bruised, scratched and tired. He leaves tantruming. This is not a fun experience. Thank God for our wonderful stylist Vanessa. She is wonderful with all my boys. He eventually gets over it. He looks so handsome in the end that it makes me want to forget what we had to go through to get this done. For now I am going to admire my great looking son.

This can be fun sometimes!

Eric is working on flashcards with the therapist, and enjoying his bounces and tickles for a job well done. We had to use the ball to keep him sitting for more than a few seconds. Not anymore, we have a chair now and he will sit well in that.

Eric reading his favorite book. He may have this memorized now, but he was saying most of the words after only looking at it a couple of times. This book is a hit with all 3 boys. Thanks Beth for giving this to us!

Verbal Explosion!!!

Eric is saying many new words right now. He is saying numbers up to 40, abc's, days of the week, colors, names of his favorite toys, and so many other things. Too many to mention. He is even reading simple books and flashcards! I never thought he could do that. We know he is a smart boy, he just does not know how to express it. Soon we will be able to have a conversation with each other. He is progressing so fast. This is even with inconsistant therapy sessions due to me being sick. I can't wait to see how much more he picks up once he is back to regular sessions. His pronounciation of some words needs work. The senior therapist is arranging a meeting with the speech therapist at his school to figure out how to proceed from here. For now I am so happy to hear so much from him. I am very pleasantly surprised. Yeah Eric!!!!!

Andy's Eval Update

Andy's appointment with the neuropsychologist was last Thursday morning. Of course I had to get sick earlier that week and I felt horrid that morning. I was able to fix myself up enough to get through the appointment. If this was not already rescheduled and wasn't so important for Andy I would have cancelled in a heartbeat. We got there before 8 am and were told that we weren't expected until 9 am. The preregistration person told me 8 am. It was around 10 am when we were taken back to the office. Andy handled the wait well. I was ready to take a nap on the couch in the waiting room. Once we got in there were a bunch of questions and tests. Normally I would have taken note of the details, but my main concern at that time was to get through this and get us both home in one piece afterwords. That is why we get written reports. If anyone is interested in more details at that time let me know.

I am going to cut to the chase. Andy got an autism diagnosis that day. It's bad news because nobody wants this to happen to their child. It is good news because the help he needs is going to be much more accessible. Once the county caseworker gets these reports he will be put on the wait list for in home services. It still may be about 2-3 years he has to wait to actually get the in home funding but at least the ball is rolling now and this was much smoother than it was with Eric. He may also qualify for more services from the school. We shall see.

The genetics appointment is scheduled for March 18th. I will be meeting with a genetisist and a genetics counsellor that day, with Andy. If anything is found with him the other boys will be brought in. There are still concerns about the shape of his forehead and the shape of his nose. Especially after I mentioned his frequent sinus infections, allergy and asthma problems and his snoring. It is going to be looked into. Anything is worth a try if it could help.

Catching Up

It has been a while since I updated. There was not much going on for therapy last week because I've been sick with a nasty flu bug. They came for a couple of hours on Thursday because I forgot to cancel them. That was also the day I loaded myself up with cold/flu meds and caffine and brought Andy to his appointment. I was wiped out an hour and a half before the session was supposed to end so they left. I feel bad that he had to miss so much. We will be back on track starting tomorrow. His schedule came in the mail yesterday and he is going to have a long week. He is going to have therapy for 6 days, 3 hours Mon-Fri and 6 hours on Sat. This is a big step in working up to the required hours. I hope he handles this OK. We still have time if he struggles with this. The sooner we all get used to this the better. On Friday he has an appointment for a haircut and the therapists are going to attend. I told them to come with a suit of armor on. He will give them a show of his worst meltdowns and behavior there. Eric has his appointment with the lead therapist (the psychologist) last Monday. I was going to write a whole entry on that, but the appointment did not warrent that. All that happened there was that we reviewed his treatment plan and his progress. The partners and Dr. H gave a few suggestions and that was it. These meetings with Dr. H are going to take place every 6 weeks according to state regulations. Maybe as time goes on these will be more informative for me. I will update on Andy's evaluation with the neuropsychologist tonight or tomorrow. I have so much to catch up on and still regaining my strength. I hope last week don't set him back and he can get into the swing of the incereased hours.