patching update

Tomorrow marks a week since we started patching. We are starting at just 15 minutes a day. The first day was amazing. We got the patches in the mail along with some charts to track progress. Calvin was so excited about it all that he wore his patch for 15 minutes right away and then hung his patch on the chart! He wanted to do it again so he did another 15 minutes and then hung his second patch up on the chart.

While he was patching we played a couple of games to pass the time. Lexey was so proud of him and gave him hugs and cheered him on. Clare was also involved in helping encourage Calvin (she is always a great cheerleader!)  Calvin was proud of himself too.

Day 2 was crazy. Calvin came home and put on the patch and looked around realizing that he couldn't see much with it on. (I guess the adrenaline high of the first day diminished his concern for this problem). He took the patch off and threw it down and took out his contact and tore it up. AHHH Since I think of life in $$$ sometimes this really freaks me out. bye bye $40 in 30 seconds flat. Calvin never escalated into full fit but had a very terrible day. I think a lot of it came from him being upset with himself for not being able to do what he hoped he would do.

The next day he had a rough day again, though not as severe.  Dave and I talked about it and wondered if we should give up. Calvin has made such good progress with his behavior lately it was getting scary to see him starting to really fall apart.

By day 4 Calvin was back in action and ready to do his best. Bless his heart. He wore his patch in the car for 15 minutes on our way to gymnastics and then again for 15 minutes on the way home to make up for one of the days that he missed.

He has done well the rest of this week.

There is such a difference this time around in working with him. Rather than telling him he has to wear the patch I leave it up to him to do it and work toward his goal. I am not sure a 3 year old could have really understood or been able to reason out the importance of patching so who knows if we could have done it another way when we patched all those years before.

I am proud of Calvin for his effort. He is doing his best.

patching again

We returned to the eye doctor to discuss Calvin's MRI results (which were clear as we already had heard) and to complete the eye exam. Instead of doing the eye exam the dr took the opportunity to tell me how important patching is,  how Calvin's eye is getting worse and how if we don't patch we will move into the realm of surgical treatment soon.

Patching is terrible!  We had about 5 years of patching in our past and I thought we were done when about a year ago Dr. OHalloran told us we could stop patching.

Here's a blast from the past about patching:

http://www.goodnewsdenise.blogspot.com/2008/05/doctors-orders.html

When Calvin wears his patch over his good eye his vision will be very poor. I had him cover his eye a couple of days ago and even standing about 3 feet from our 42in TV he could not read the words on the TV and it was blurry for him. He will be very uncomfortable with a patch on.

We are working really hard to Calvin's behavior right now and adding a patch will make him more irritable and uncomfortable and getting him to wear the patch will be struggle if at all possible.

I am thankful to have Lauren our behavior therapist in my court. I talked to her about this dilemma and she helped us set up a plan for patching. She recommended that we start with a very small amount of time wearing the patch. For the first week Calvin will wear the patch 15 minutes day and then we will move up to 30 minutes/day and over a course of time we will eventually work up to 3-4 hours a day which would be wonderful.

I let Calvin order some patches and a few patching charts from ortopod.com and we will start as soon as they arrive.  We are moving at a slow pace but hopefully not rushing or forcing will help us to be successful in the long run without so much contention and fighting.

It is neat to work with Lauren and see how a careful plan is so important. I have always attacked things with energy, gusto and force but I see that if I direct some of that energy to planning and organizing and BEING PATIENT I can be more successful.  I wish I could have known what I know about 10 years ago. I feel like my learning curve is behind my kids' needs! I guess that's part of how life's experience is. It wouldn't be called learning by experience if you could learn it without the experience!

this month

- started working with behavior therapist/parent coach -  first thing we are working on is the morning routine. It is a short and succinct time. 6:30-7:20 eat breakfast, get dressed, take pills, put in contact, get shoes on and get on the bus. Sounds simple enough but it is a struggle many days.

- eye dr. appt with complete exam, eye drops included. More than likely a miserable day.

- OT evaluation at a private group very close by. We had an OT evaluation at Rady children's over a year ago and it didn't go very well so we're trying again after prompting from the behavior therapist to be sure we're getting what we need in that area.

- IEP meeting. We requested a triannal IEP since we may be looking to move a year from now. . We will have new evals from OT, speech, psyco-educational, and academic of course. Normally these are only necessary every 3 years but I wanted all of these evals done this year so that everything will be complete and up to date if/when we are looking for a new school a year from now (all depending on the match in Dec)

2 great days

We've had 2 great days in a row with our boy and before that a few "pretty good" days. It is heaven.

(nothing significant has changed - just wanted to make note of some good news)