may be a miracle

This week we had our eye checkup. Calvin's eyes appear to be fine. The drifting in one the dr. was worried about doesn't seem as bad as at our last visit. The drooping is not apparent.  His vision is fine (not going up or down) and the concerns of a couple of months ago are gone. I am not sure if the itty bitty extra effort we are putting into getting his contact in and he patched for about 2 weeks at 15 min/day made that difference or if we are just lucky. And in my view, there's no such thing as "just lucky" --  really it means we are really blessed.  I hadn't even realized that we were so lucky until Jessica asked me how everything went at the appointment. I am so quick to forget those major stresses, probably it is my way to cope, but I want to be sure to never forget to be thankful for the miracles, tender mercies and kisses on the cheek from God that we experience in our lives. We experience them so often and I am so thankful.


(I got the phrase kisses on the check from God from a great parenting book called 10 habits of Happy Mothers by Meg Meeker. It was one of my favorite parenting books of all time. It is not so much a parenting book as it is a how to be a great person so you can be a great mother book. I highly recommend it!)

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!

longest day ever

Today we went to the opthomologist to have Calvin's eyes exam for the year done. We could have gone to he optician who gives Calvin his contacts but our neurologist wanted us to see O'Halloran to check some concern he had with eye muscle movement.

The appointment did not go as I thought it would. It ended up being on of the most stressful days of my life and I was only expecting a typical eye exam.

First of all, Calvin's vision was checked and was found to be 20/50 in his right eye with the contact on and 20/20 in his left. He has lost one line of vision since his appointment a  year ago. The best his corrected vision has ever been is 20/40.  It is such a bummer after all those years of patching, drops and suffering to make backwards progress. Dr. O'Halloran wants us to start using eye drops again, once every 3 days to strengthen the rt eye. After the appointment when I told Calvin about the eye drops, when he heard it was the left eye he said, "but that is the eye I can see with." Poor sweetie has obviously forgotten what it is like to do drops. It is such torture to make his left eye blurry when it is his dominant eye. We will definitely not start those for a couple of weeks after a few other appts and spring break.

Anyway, then I asked O'Halloran to check the eye muscles. He noticed that there was a little weakness in the rt. eye movement on the periphery. Also, he noticed that Calvin has a droopy lower eye lid. All of these are consistent with a third nerve palsy and even though he has only dropped one line, a decrease in vision along with these other symptoms added to the concern.  Dr. O'Halloran asked to call Dave to explain what he saw (never a good sign) and told him that Calvin has pupil-sparing third nerve palsy and wanted to order a MRI to rule out any cause (such as tumor or bleed) within a day or two (also not a good sign).  He sent us home without doing the eye exam saying he would want to wait for the MRI before doing the exam (also not a good sign). 

Being married to a neurosurgeon has advantages and disadvantages. I know a little more than the average person about the types of patients the neurosurgeon sees and why he sees them. It is quite common for patients to present with a cranial nerve problem and find a tumor. I was sure we'd find a tumor. I cried all the way home from dropping of Calvin at school and had visions of surgery, chemo, and a funeral.  It was terrible.

We called to schedule the MRI and got a time for 8pm. It was an awake appt, meaning no sedative or general anaesthesia would be used. Calvin is either the most sweet or most difficult patient they see so it is never safe to assume a 30 minute brain MRI will be possible, but we decided to give it a shot since it was the same day and we could easily try again if it didn't work without wasting much time. We rented Wreck-it-Ralph for him to watch in the machine and moved ahead.  Dave told him about the appointment and how he would get to watch the movie with special goggles in the machine and he was super excited about it. The girls were super jealous which added to Calvin's excitement! :)

The MRI went well. Calvin was an angel. He even had to get in IV for the contrast and was totally fine with it. He got to watch the movie. Fortunately I had picked up a  new bey wheel toy for a dr. appt we have next week but was able to send it with him tonight to help him be motivated to be perfect. After the procedure he also got a happy meal from McDonalds.

The tech let Dave look at the images when the scan was done. There is no tumor.  The images look very similar, if not perfectly the same as the images from last summer.  Dave said there might be a blood vessel that is pressing against the 3rd nerve but it is hard to tell on the MRI. We will wait for the radiologist read. I am not perfectly unconcerned about it as I still worry about a problem with the vasculature.

Dave and Calvin got home at 10pm. Of course darling Clare was awake to greet them and ask about Calvin's new toy, treats and battle wounds! Calvin was in a great mood and I am proud of him for doing so well today.

As often happens, we have  a cluster of dr. appts this month. Two today, one tomorrow and one next week as well.  Now we also need to add another optho appt to get the eye exam done.  Dr's are funny when they tell you to schedule things in a week or two b/c they never have openings. I am guessing it will be in 2 months that we are finally able to see him. Though I'd bet $ that he'll call Dave with the MRI results as soon as he sees the radiologist. Darn HIPPA laws prevent Dave from looking up the records himself.

one month contact!

Today Calvin finally reached his goal of wearing his contact for one month as he is supposed to do. We started contacts in November and every month he either accidentally lost or took it out somewhere or purposely took it out and ruined it when he was mad.

I am proud of him for doing a better job with it now!

He is trying to be responsible with his contacts so he can earn his Wii back. Dave took it from him a few months ago as a consequence for being so irresponsible and ungrateful for his contacts.

Yay for Calvin!

Also, a month or two ago we met with the opthomologist. We have been seeing the opthomologist 4-6 times/year for the last 6 years. At this appointment he told us that we don't need to see him anymore unless there is a problem. We can follow up with the optician who fits us for his contacts.   It will be nice not to have these appointments any more. (Though I will miss our opthomologist. He was my favorite of all of our Dr's.)  And, the timing couldn't be better. With all this new seizure stuff going on we will probably have plenty of other dr. appointments and things to worry about.

Calvin's vision now is 20/20 in one eye and 20/40 (corrected) in the other. It is probably as good as it will get and I think it is a result we can live with. It is certainly an improvement from where we started which is 20/80.

Contacts woes

Calvin has been begging for contacts for years. At our appointment last summer we asked our Dr. about getting them (thinking he'd say no, Calvin is too young, but instead he said, "sure, why not?" It took a few months to get an appointment with the optrician we needed to see and to get our first contact lens to try. We noticed Calvin turning his head and favoring his good eye and he also said he liked his glasses better. So, we went back to the optrician to try another lens. We did this 4 times and nine months later we finally have a contact that works. I'm not sure if Calvin is super fussy or if he has tricky eyes. He only needs a contact in one eye. Meanwhile we have had some trouble with taking care of the contacts. Early on, he lost one at school, he took one out at a football game. A little later, he took one out and threw it on the floor when he was mad, he took one out and tore it in 1/2 when he was mad, took one out and accidently ripped it while holding it and waiting for mom to wash her hands. He took one out on the bus becuase he was mad and didn't want to ride the bus! AHHHHHHHHHHHHHHHHH!!!!! We were quite understanding of the first few times Calvin lost or took out a contact since this is a new experience for him and it was truely an accident if he lost or took one out while not at home. Now he is a somewhat more experienced contact user and he has decided to take out a contact and destroy it when he's mad, we are a little less patient and understanding. In fact, a few weeks ago when ripped a contact on purpose Dave threw away the WII. (Funny thing about this is that Clare cried more than Calvin. She is a sweet little person). Each contact is supposed to last one month. So far the longest we've made it is 2 weeks. Calvin only gets one contact/month so if he loses it early then he wears glasses until it is time to try the next contact. This month he got his contact April 10th. Tore it up on the bus less than a week later. He will get a new contact May 10th. The crazy thing about this is that he LOVES to wear his contacts and it really only hurts himself if he breaks one. Life all other aspects of Calvin's life I hope that this will pass and he will eventually learn to be more responsible!! I do not like this new blogger format!!!!!!!!! Where has spell check gone?