x-rays done...waiting for review

We were finally able to have Zac's x-rays done today -locally. They have been mailed off and we are awaiting the review, and if he is ready for the next surgery. I was thrilled today that Zac was such a big boy and did not even cry! He is normally terrified of the x-ray machine, and having his legs held down. Today the technician spoke to Zac, telling him exactly what he was going to do, when he was going to do it. I think there was actually a connection with this guy. Too bad this guy isn't in Baltimore....!

Hopefully the x-rays are good enough and Dr. Paley will be able to have an answer for us by the end of the week.

Next surgery coming, but not yet scheduled

I've been waiting to get the date for Zac's next surgery, but we have not been able to narrow it down yet. It seems that the clinic is having some difficulties with the schedule.

At the last follow-up on Sept. 29th Dr. Paley said that it was time to schedule the surgery to align the bones and to do the knee reconstruction for the left leg. We were looking at the last week in Oct., but at this point it is doubtful that it will be that soon.

X-rays were done on the right leg (the first leg that was done last year), but when we asked about it, Dr. Paley just said that he looked at the x-rays, but he just wants to focus on the left leg for now. We are uncertain what that could mean, and what he may not be telling us, but we will go with that for now. If you will remember the Right leg is already shorter than the left leg; this may mean that there is a problem with a growth plate.

Please pray with us for the orchestration of the surgery, the physical Therapy that will change after surgery, and for continued provisions for our travel, and monthly expenses. Also, for continued strength through this process.

Thank you!

Back to Baltimore

The Save A Limb ride is Sunday, and Zac's appointment is Monday. Looking forward to it. We do have a concern that the antibiotic is not helping with the pin site infection. Please pray that we can get rid of this infection!

Prayer request

Please pray for this young man who posted on our TARS support group last week...

Please pray for me,
i don't know how to explain this but here goes....last Sunday i went
into the hospital because i saw bruises on my back. thinking that it
was apart of my TAR syndrome, i went in.....they told me that my
Platelet count had dropped to 59,000...then a few days passed and it
dropped to 56, 53 then to 50...it held at 50 then jumped back up to 68
then to 54...during all of this they had my blood sent off to be
tested....on the day i was being discharge the hemo Dr. came sat down
in front of me and said, in a low voice...Mr. Goss i have bad news, we
got your test back and i'm afrade to tell you but you have
T-lymphoblastic Leukemia. this is a cancer of the blood....i'm 29 and
scared for my life...i have two path...take a year of kimo or in four
months you'll die...you can't even begin to imagine what i may be
going trough....my mind is a mess and my nights are long and my days
are short..

~Derek

Please pray that Derek will find peace with God, will have comfort, and healing. Derek has authored some videos on youtube, under the Derek Goss show. Please pray with us...

Thank you.

E-mail Update for 9-8-08 follow-up

Zac's follow-up visit was almost a week ago, but I am just now sitting down to write the update. I know part of it has to do with some disappointing news, but, I will start with the good news. Zac's left leg, the one with the fixator is doing really well. The x-rays revealed that we are almost done moving the bones down, they are almost even at this point. Just a few more weeks of turning, and then we will be scheduling the surgery to align the bones. Dr. Paley is really pleased.

The disappointment that I spoke about has to do with Zac's right leg. It is noticeably shorter than the left leg -already. When we addressed this with Dr. Paley he explained to us (for the first time) that the growth plate had to be split -along with the bone, but, he had hoped that it would not be damaged. After the initial surgery on that leg, there was a nice ball of cartilage, however, when they went in to do the alignment surgery, the cartilage was missing! This all happened after the break in the Tibia, which may be the reason that the cartilage came off. (Dr. Paley corrected this problem in the left leg, so, there should not be the same issue with that leg) Therefore, the top of the Tibia may not be growing. Our initial thoughts were overwhelming, with much concern for further surgeries -including limb lengthening. It has occurred to us that an artificial product may be an option much sooner. We have been told that artificial knees will not be an option until Zac is done growing in order to preserve the growth plates. This area has yet to be discussed with Dr. Paley, but we are hopeful that God has another plan. Please pray with us that we make the right decisions regarding his Right leg, and that we are made fully aware of our options, and the best solutions.

Our next visit will be Sept. 29th. We are hoping to go up a day early to attend the annual Save-A-Limb ride (www.savealimbride.org -September 28th). These Dr.s do amazing things for so many people!!

Thank you for continuing to follow our story, and for all of your coveted prayers!!!

LeAnn, James, Zac and Cai

Zac is doing much better with the pain management. He is however, on the second round of antibiotics as it was apparent that he was once again infected. The pin site infections are VERY common. The antibiotic is pre-prescribed so that we can have it filled whenever we see the first signs of infection. It is so nice to finally be off of the heavy med.s, and have Zac very close to the Zac that he was before the surgery. He is often frustrated with things, but what 2 yr old isn't. He is scooting on his bottom again, almost as fast as he did before. He can reach things off of the floor much better than he did before as he has better balance, and his foot is not in his way anymore. All in all things are going well. We return to Baltimore on Monday Sept. 8th, hurricane permitting!

follow-up post poned

We get to postpone our next follow-up with Dr. Paley until Sept. 8th. We are relieved by this as James will be starting Jury duty next week. Zac is still experiencing quite a bit of pain and is on the pain meds around the clock. It seems as though he was done with the meds by this time on the rt. leg. It is a blur to remember those days. I am really looking forward to a drug free baby!

Zac is already scooting on his bum! He has been really good at this, especially with one leg bent and the other in the brace. We were unsure how he would do this after the surgery with 2 straight legs. Well, he thumps his leg with the brace, and pushes off at the same time. Although he is slower than before, he is doing it! He is rolling as well.

We met with Zacs therapy coordinators today, and an assistive tech. rep. It is always a challenge to come up with new creative things for Zac. Although, most of the time he figures it out himself. We are looking into ideas for eating with utensils, and bathroom needs. I don't think that we will do much potty training until after the surgeries, even though he is showing signs of readiness. That is going to be a challenge that I can put off for a while!! What we discussed today involves the transition from the early intervention to formal education. They actually start doing IEPs (Individualized Education Plan) at this point of transition(when they are 3yrs,) even if they do not start school until they are 5 yrs. This just seems overwhelming right now thinking about the educational process and all the challenges that it will involve, including the social!! Ok, one day at a time....big sigh. For now he is an amazing 2 yr old, who does not seem intimidated by any obstacle that comes his way. He teaches me so much, but I am slow to learn!!!