Wednesday, April 20, 2011

Cardiology Follow Up and Eye Appointment

Well we have had an extremely busy last couple of days. Today we went to our children's hospital about an hour away. Wysdom first had an eye appointment. His eyes cross and shake, so we have been doing patching for a long time. We switch eyes depending on how his eyes are responding. Normally we patch for about 45 minutes and that pretty much is not fun, because Wysdom can pull it off in a second and he does so. So we went last month to check his eyes, but he would not cooperate so we came home. So this time he still did not want to cooperate and what I mean by that is that he won't open his eyes, and he is actually strong enough to keep them closed.

Needles to say they had to use some equipment to keep his eye lids open. Can I just say that I DID NOT LOVE THIS AND EITHER DID WYSDOM. If you have ever had this done to your child, I am sure you agree with me. It was hard for me to watch. I mean it only took a short time, but I couldn't handle it so well. Shed a few tears, maybe more than a few in the office. Verdict is that we no have to patch his eyes for a total of.....4 HOURS. Ha. I will let you know how that goes. I am going to have to figure out some contraption for his patch. We are trying to get his brain to use both eyes the same amount of time. Right now he uses his right eye and his left eye is weak. When they are balanced the we can go to surgery to try and fix the crossing.


Next....

We went to our Cardiologist appointment. We had an echo done at Sick Kid's about a month ago. We also had one done today too. This was a big appointment and I am glad to say that all has stayed the same. This is the best news ever!!! He still has a leak both on the right and left side of his heart and some narrowing on the right that they will watch. However all is okay now, We just have to do a "holter" not sure it that is the correct spelling. The contraption that they wear to monitor their heart beat. Once we do this we are not looking to go back for a YEAR!!!! I can not tell you that I am so relieved.

We still have a sleep study to think about as Wysdom is not sleeping well. So it might be a lung issue, or ENT issue.
I will keep you posted. All in all it was a busy day and Wysdom did his best. He was cried for a good portion of the day, and was happy to come home.

Next stop. Last RSV shot of the season in the morning. Oh boy he is not going to be loving this.

5 comments:

Lacia said...

Great news on the heart! I'm sure you are ecstatic! As for eyes, I don't even want to think about what kind of contraption they can use to keep his eyes open. Poor guy. Hopefully the busy-ness slows down a little for you.

RK said...

Wow. We've not ever had to use any kind of device to keep her eyes open. Just lots of things with lights and music or videos to get her attention so they can check her out. I'm sure that was horrible to deal with!!

We've not done patching either, but I keep asking if we should. Apparently, our issues relate to the nystagmus more than the strabismus, so patching isn't in the cards.

Good luck with such a long period of patching!

Sasha said...

Thanks Lacia,

Yes I am so Happy about the heart. I could not make it last week as it was just to hectic. I think I am going to book a couple of weeks with no appointment just to get some rest.

RK,
I will keep you post. Glad you don't have to do the patching and it is so good that she keeps her eyes open for the exam. That is great.

Thanks for the comments.

Brandie said...

I'm sorry you had such a rough eye dr appt. I talked to a mom the other day that said they sedated her son to get an accurate prescription for his eyes. I don't know if that works in every case though. Hope things go well with the patching. We're trying to keep glasses on here and thats hard enough.

Tressa said...

Wysdom is so adorable! I was over on Blyssful Health and saw you mentioned that you have two blogs, one is about your Down Syndrome son. I had to come check it out. My little brother is Down Syndrome and the joy of our lives. :)