Andrew had labs today.  Things were a little confusing this morning.  We went for labs this morning because the woman that is good with Andrew was supposed to be there.  That is why we rushed it this morning before the feeding evaluation.  I really didn’t want there to be any thing to upset Andrew so he was on his “best” behavior for the evaluation but we love Clay and she is so good with him, so we decided to go ahead with it.  Well, Clay wasn’t thereL.  But luckily, one of Andrew’s nurse-friends, Mia, was able to get him on the first stick!  Thank you Mia!!!  Because Nancy wasn’t there, I doubt Pittsburgh (or me!) will get any results today.  Hopefully tomorrow!

Then we headed to Mt. Washington for the evaluation.  We met with the Senior Occupational Therapist (who is also the Day Program Manager) as well as the psychologist.  Andrew did his typical eating.  It was actually a little worse than he has been the last few weeks but showed a lot of the behaviors that I deal with on a daily basis.  He screamed, cried, gagged, yelled “Water!” and “All done!” the entire time.  He did try to take a few bites on his own.  They stepped out for a few minutes to discuss and agree that Andrew issues are both with his oral motor development as well as behavior.  Basically they came up with two options.  The first is to go to Mt. Washington twice a week for a 45 minute to an hour clinic visit.  They would have a feeding session and then give me suggestions of things to do at home to help.  The second is for him to start the Day Treatment Program.  This is a six week program where he goes Monday through Friday from 8:00 am to 4:00 pm.  I could stay for the day (because I won’t leave him) but for the most part, he would not see me.  I would go in to observe the feeding sessions through one of those double-sided see through mirrors but he wouldn’t see me.  At some point towards the end of the six weeks, anyone that feeds him would be trained on how to feed him.

My feeling is this.  We have been working with the OTs (who are both wonderful!) in infants and toddlers program since Andrew came home from the NICU.  He has made wonderful progress but we are stuck right now and have been since October.  I do what the OT says for me to do, but it is still such a fight and I am not getting anywhere with him.  I kind of feel like going to the clinic two days a week would be the same thing.  I hate the idea of him spending all day for six weeks, especially the summer, in the clinic but I guess I’d rather do it now, before school starts rather than pushing it off any more and then ultimately deciding the Day Program is the best thing and then missing six weeks of school later.  If we decide to do this, then they are going to try to start him in early July so that we could still have our vacation at the end of August and he wouldn’t have to miss school.  It is also a good time because he misses the big sick/cold/flu/RSV season so hopefully, with him being immunosupressed, he’ll have less of a chance of getting sick. 

While we were meeting with the OT and the psychologist, I, of course, got a little emotional at one point.  I asked, with their experience, have they seen children with Andrew’s problems that eventually went on to eat “normally” and they said yes.  But they also said that not all kids are “fixed” in 6 weeks.  Once they have finished the 6 week program, then they are seen weekly (or even twice a week) in clinic to continue working and providing support.  They follow their patients for two years (I am assuming not at frequently as they get further out).   

I asked what the children do for the rest of the day when they are not eating.  She said they are given breakfast, lunch, have a nap in the afternoon, and then are given a snack.  Other time is spent working with therapists (like he probably would get additional OT services to work on his oral motor skills).  They also seem to have a pretty structured day.  They have craft time, play time, circle time, and they go outside if it is nice.  So it may actually end up being a great experience and give Andrew more of and opportunity to get ready for school and following the rules and routines.  During the evaluation, we talked about his anxiety issues and how he is with separation.  I explained how he used to be and talked about his experiences at St. Al’s and at Veteran’s for his toddler group and how great he is doing.  But with this being a new situation with different people, I am not sure how he will act.  When we were getting ready to leave, they asked if we’d like to see the playroom, where Andrew will spend the majority of his time when he isn’t eating.  We walked in and he ran to the table of kids who were getting ready to do a craft and yelled “Hi!”  It was the cutest thing.  Obviously there will be no separation issues!!!

I called the Feeding Program Manager with a few more questions before we made our final decision.  I asked her my questions about the program and it looks like we are starting July 7th.  We will go a half day on the 7th for assessment, to meet the nurse practitioner, and to sit down and set the goals we want Andrew to achieve by the end of his 6 weeks.   She spoke with Dr. Katz, who is the medical doctor to officially sign things in order to move forward, and he feels that this is the perfect time for Andrew to start the program.  One of the reasons we did not start the program in October after the first evaluation is because of entering flu season.  This is a good time!  He also said it would not be a problem for me to give him his medications.  Normally, they have to order all meds from the hospital and the nurse has to administer them.  Since I am going to be there, they are going to allow me to do it.  (I am very anal about checking doses and making sure he gets them on time because there are several meds that have to be give without food, some with food, some a certain amount of time away from other meds…  There have been so many mistakes in the past, it just makes me fell better to do it myself. Can you say control freak?!?!)  I will be getting a call from the woman about the insurance piece (ugh!) and should be receiving a packet in the mail with all of the information and paperwork I’ll need.  I am to take his food the first day and then after that, they will order his food from their cafeteria (blah!).  The plan is to give Andrew his breakfast at 8:15 (so that he can get his medications on time), have lunch at 11:30, and then snack at 1:30.  Snack time won’t necessarily be used to get him to eat but more to work on skills such as chewing.  Normally, he would nap in the afternoon, have snack later and then leave around 4:00.  It seemed silly to me to waste the whole afternoon “making” him take a nap so they will skip or shorten his nap and give snack earlier so that we can leave around 2:00.  This will be good because I can get Dominic home in time for a late afternoon nap and even put Andrew down for his “rest”.  They usually take their afternoon naps around 2:00 anyway, so we will only be a little late!

Once he is done with the feeding clinic, the OT will speak to (or put in writing for) the teachers/OT at his preschool the things they have been working on so that they can continue to use the strategies in school.  Hopefully, in two months or so, Andrew will be eating better than he is now, chewing foods, and not gagging with new textures.  It may be a little bit of wishful thinking but I can hope!!