Wednesday, September 15, 2010

Disapointing appointment today

Well we headed to the U of M Childrens Hospital today for a appt. with Dr. Bothun (Ped Opthlamologist) to re check the eyes to see if the increase in meds 4 weeks ago had gotten rid of the cells in the eye. Unfortnately there was no improvement. I was very let down. Dr. Bothun had said the last time if there was no improvement by today that he wanted to add another med. Today he was going to but called Jackson's Ped Rheumatolgist Dr. Vehe to discuss it with him and he didn't agree with adding another med at this point. He wants to give it another 4 weeks first. As much as I was completely against adding another med I feel that at this point we have waited a long time and there has not been any improvement. The only thing that has really helped at this point was the joint injection. So at this point in time I am with Dr. Bothun and would like to add the other med if its going to help. The longer the cells stay in the eye the more damage it does! For the meantime we did increase the Pred Forte eye drops and he is already on the max dose for the Methotrexate and Naproxen so those will stay the same. What a disapointing day, the whole ride home and tonight I couldn't help but feel so depressed.
As far as the episodes he had a couple of weeks ago, I am waiting for his Ped to get back from vacation to talk to her and see what she wants to do. I choose to wait because I have become very particular with who Jackson sees just because of the history with other doctors not listenig me. I love the 3 doctors he has now and don't care to see anyone else.
I had a old high school friend, Keely, in town this week from Oregon. Keely and her little boy and another friend Liz and her 3 kids came over last night for supper and to play. Jackson loved it and had soo much fun! The picture above is all the kids.
Jackson rode the bus to speech today. He was so excited before the bus came but when he got on and I went to leave he looked terrified. But when he got home all he talked about was getting to ride on the ''big bus.'' It was cute!
He has another cold, he just had one last month too. But we can thank the wonderful Methotreaxte for that. He seems to be doing just fine with it but given his worthless immune system I will watch him closely and I am sure it will take a good 2 weeks to fight it off! I am bracing for a long winter of illnesses with him being on methotreaxte which is a immunosuppressant drug. And now that he is in school 4x a week there will be no avoiding all the germs!
Well thats it for now, next appt. is Oct. 13 with Dr. Bothun and Oct. 15 with Dr. Vehe. Thanks for all the thoughts and prayers!

Monday, September 13, 2010

Never A Dull Moment!

It feels like its been forever since I updated this site but I think its only been about 3 weeks!
Mike and I just got back from Pittsburgh. It was nice to get away, it was our first vacation without Jackson! I missed him a lot but he had a great time with my Grandma!
Jackson has been doing well. He just started Preschool and a speech group (which he refers to as school). He is goes 4x a week and loves it. Wednesday he will start riding the bus to speech, which he is sooo excited for! On memorial day weekend Jackson had a couple of ''episodes'' that freaked me out. He would just all of sudden zone out with this blank stare,possibly a seizure. It would last for a minute or less. It happened about 4 times in 2 days. I called urgent care and talked to a nurse she didn't not think they could see him, she didn't think they were equiped given his disease. I then called the on call ped and he said to give him tyneol. Not sure why because he didn't have a fever and he wasn't sick. But this was the same Ped who said there was nothing wrong with him before he was diagnosed with the JRA. So given his past with Jackson I decided to call the on call Rheumatolgist at The Childrens Hospital. She said he needed to be evaulated and that he could be seen by someone here so we wouldn't have to drive to Minneapolis. The next day was Memorial day and then we left for Pittsburgh so he hasn't been seen yet. And his ped is out all week. So I called and left a message with Dr. Vehe's nurse to ask him what we should do so just waiting to hear back from her. We have a appt. in Minneapolis with Dr. Bothun to look at the eyes on Wednesday. So its been 4 weeks since we increased the methotreaxte to see if the eye would get better. I am soooo anxious because if there are still cells we will be adding another med. So please pray and cross your fingers we get good news Wednesday!! As far as the other knee it is still the same, no improvement but it hasn't gotten worse either.
Thank you for checking in and I will update after Wednesdays appt.