Journal

Monday, November 13, 2006 3:10 PM CST

Please note new website address link under Brian's photo at top of page.


oK, OK, OK, Finally, a new update is here!! I have also updated the photos in the Zeocast window.

Hello and Happy Fall!

I must apologize for the long delay, but when all the super serious issues of life with a sick child go by the wayside, it seems less important to update as often. For the most part, life is really good for all of us and the updates are now more about regular day to day things that most families go through and less about Brian's health issues. However, I keep getting "kind" requests from many of you about the need to still update, so I attempt that today.

Brian's health has remained stable since the last update in Feb. He had his endocrinology visit (growth issues) and they are increasing the dose on his growth hormone shots a little bit. He will be seen again in March. We got a little scare this summer with Brian's bone density again...he was showing serious osteoporosis but the approach we have taken in the past has caused problems with his calcium levels so we are now trying Brian on Fossamax. He has tolerated the medicine so far, and we will just have to see what the next xray or bone density scan shows for improvement. It's amazing that as active as he has been that he hasn't broken any bones.

Brian's cardiology check up is in December and he will have an echocardiogram at that time to see if there is any improvement since beginning a second medication for his pulmonary hypertension.

Feeding issues remain the same......same story, different day. (insert big heavy sigh here!) He still eats everything by mouth during the day....usually food that I have pureed and boosted with extra calories, and he gets a bolus feed of formula at bedtime through his feeding tube. We are waiting to meet with the new feeding specialist perhaps in December.....CAN'T WAIT!! We are hoping for a miracle with her!

All in all, Brian is doing fine though. He continues with swimming lessons every week and he gets better and better, but at a slow rate. 4th grade is going well, but it is much more difficult than any other grade for him so far. This is where the long term effects of treatment seem to be affecting his day to day life the most. Keeping him focused sometimes is difficult, and retaining information takes LOTS AND LOTS of repetition....despite this, his first quarter report card was his best ever though!

It seems that we can't get enough of the dental accidents around here (see more about that later with Eric!), and this past Friday was another round......Eric and Brian were wrestling around and after ignoring a request to "settle down and stop wrestling", Brian's face plant into the fireplace brick ended it for good! He chipped off the end of his front permanant tooth and the tooth got shoved up into his gums!! He is seeing the oral surgeon today for an xray to see if the root of the tooth is fractured.......Oh brother! I bet it will be awhile before they wrestle again in the living room!

Eric is doing well as usual. He's in the 6th grade and was recently honored as a Student of Distinction. He was also selected for a Math competition and his team (3 other students with him) placed 4th in the competition out of 32 teams! Pretty cool.....I could learn a thing or two from him in math!! His baseball season went very well this past year and his team took 3rd place in the state tournament....he pitched a complete game in the quarter finals taking them to the semi finals. It was incredible to watch! He did have a scare though around week 3 of the season when he was playing left field.....he was going for a fly ball and collided with a metal fence with his face!! He split his lip (needing 13 stitches!) and knocked out his front permanant tooth! They found the tooth, cleaned it off and put it back in (his coach is a dentist!). Jeff took him to the ER and met with an oral surgeon who stitched him up and placed a splint on the upper teeth to hold the permanant tooth back in place. He has recovered quite well from that and at the moment, the tooth still seems to be alive and well. Time will tell though.
He is in fall basketball now, and begins winter practice for baseball in January.

We took a couple of trips this summer after baseball was finished. The first trip was in July to Edisto Island, South Carolina. We stayed in the beautiful home of a family friend right on the beach and had a great time. Our next trip was in August and we went to the Dallas area of Texas to see some of Jeff's family. We spent most of the time by the pool at Jeff's brothers house!

Jeff and I are doing ok depsite the fact that older age is creeping up on us causing us problems. Jeff had surgery in September on his left thumb. He had the joint fused because it was bone on bone causing him severe pain. He was out of work for 6 wks, and recently went back in a light duty capacity. He just had the pin removed last week and the cast taken off and is now in a removeable splint. If he can get most of his range of motion back in the next 3 wks, he can go back to full duty. If not, he will need some therapy before he can go back full time. He has done really well but it has been very frustrating trying to live with just one hand! He is normally a man of action with a long list of "to do's", so he's had to find a way to be patient with that!

As for me, I found out that my low back muscles were not as strong as I thought they were and teaching 4 weight training classes a week caught up with me! After trying to take it easy and taking medication didn't seem to help I had an MRI done. It showed that I have a protruding disc at L4-5 and L5-S1. I don't know if that was the main cause of my back pain, or if it was just not enough proper stretching and strengthening of the low back muscles, but I took some time off, went to PT and started back very slowly. I will not ever go back to 4 times a week, but I am back to 3 times a week, and am working my way back slowly to my prior weight selection. I am also taking the time to do proper stretching and strengthening every day and I believe that is the key to my getting stronger. I love what I do, but my back is so important to just living a normal functional life, so I must take care of it!

I think that brings us up to date. I have a couple of things to share in regards to raising funds for the JMML Foundation. First, I just found out about a cool search engine called GoodSearch.com. If you do any web searching on their site, they will donate 1 cent to any charity or organization that is signed up with them every time you use them. They are powered by Yahoo, but it's a great way to donate to your favorite charity any time you are searching the web.

Also, I am hosting a Silpada Jewelry party on Dec 1st. My friend Whitney, who is the Silpada representative, is donating 75 percent of the total party profits to The JMML Foundation. If you would like to participate, you can view the entire collection at: www.mysilpada.com/whitney.sojka. If you would like to place an order to benefit the Foundation, let me know by Dec 2nd and I can add it to my party order. Your order can be shipped directly to you, just in time for a nice holiday gift for someone you know, or for yourself. If you have no interest in ordering any jewelry, but would like to help out the Foundation, you can always go directly to the Foundation website linked below. You are helping children like Brian, and families like ours in the fight against this very rare childhood leukemia.

We hope you and your families are doing well and we always love to hear from you. Thank you so much to those of you who sign the guestbook and send great jokes to Brian. He loves them!

Thanks for your support and enjoy your upcoming Holidays!

The best to you always,
Niki