Milwaukee Monday

Only good news to come out of this Milwaukee Monday!

Yesterday we battled the icy roads and went down to Children's for a check-up with Brode's craniofacial surgical team and to see his ophthalmologist.

We were lucky to get the appoinments on the same day, and it was a good thing because both were very short and full of good news. Brode was nervous, he said "no owie" the second we got into the skywalk of the hospital, but we quickly explained we were just there to talk.

(Sticker for being a good boy)

First, we had our craniofacial appointment. We saw the nurse, then Dr. Denny and Dr. Braly came in to talk to Brode. They were extremely pleased with his progress. Dr. Braly took Brode's pictures for his file (they take one every time we are there, it is very exciting to see the changes through the entire journey) and chit chatted about sports and Santa while we talked to Dr. Denny. The outcome of the message was that the ultimate goal of the very first surgery and "problem" has been fixed and has remained fixed. If we were to see any backlash we would have by now. The number one thing to watch for is growth - Brode's head is growing well and he is staying on the charts, as well as entire body growth. He has maintained steady growth and has no developmental delays proving that we made the best decision for him and he has healed tremendously well. They were all impressed with how big and talkative he is now after seeing him in his ultimate low.

Our next step is to schedule a post-op CT scan to confirm that all of the holes that were filled in with bone grafts in the second surgery have completely healed and show no concern as a soft spot.

Next, we ate lunch and took a little break. Brode explored a bit before our next appointment.

Our second appoinment was in the eye clinic. We saw Dr. Ruttum last summer where we made a decision to wait 6 months before discussing any options. Our appointment went down the same route as the first as we decided we're not alarmed with his vision and eyes quite yet. He can see clearly, and more importantly out of both eyes. The eyes work together (no wanderers), giving no sense of rushing. He will need surgery on the muscles for tracking eventually, but because it is not distorting his vision at all we would rather take the time to diagnose which specific muscles are causing the problems. Until he can sit still in the chair himself, we're on the waiting train.

I have no ambition to put him through anything else, but I know he needs the eyes. Shockingly I'm much more scared about the eyes than the head. I know the skull surgery was right by the brain, but it was still very closed off. The eyes make me extremely nervous, how will he see the hockey puck if they mess up his vision? He bounced back well as a baby, but as a child how will he cope?

Besides a good progress report we also got more good news - our next appointments with both doctors are in 6 months. That puts us in JUNE! This last stretch of time (August 31 - December 13th) was the longest amount of time we have gone without going down to Children's since Brode was diagnosed in February 2009. We now have six months of no doctors - what a relief. Between surgeons, pediatricians, eye doctors and physical therapists it has been a long two years - we're excited for a break and I'm sure our insurance companies are too!

Finally, I have one last request. I don't typically put these types of things in here, but I have a prayer request. December 13th, 2008 (2 years ago from our appointment) Brode was 2 and 1/2 months old and was hospitalized with pneumonia for 3 days. The first day we were there we had to sit down and have the discussion with the doctor that if it were a bacterial infection he would be there for two weeks and we would face Christmas in the hospital. We soon found out it was only viral and were sent home, but for that split second I couldn't imagine spending Christmas there.

Many of the kids that were at Children's when we were there yesterday, will be there for Christmas. Kids walked around and were pushed in wheelchairs with a large variety of ailments, all heartbreaking to see. A downfall of staying there is knowing which floors are for different conditions. Pediatric ICU is the 4th floor - the windows are colored with marker, wreaths are hung, and cards line the windowsill. It was painfull to drive past those windows that were Brode's that are not painted with "Get Well (Name)" in them. I'm asking for a small prayer request for those children not celebrating at home this year, as well as all their families.

We're suckers for donating every time we see that Children's Hospital, Children's Miracle Network, and Ronald McDonald house logo to give to the children in that same situation Brode has been. Our second surgery, while we were in PICU, the police department came through and distributed Build-A-Bears with blue ribbons on them as well as coloring books and new crayons for every child in PICU. Even the smallet pick-me-up can boost a sick child's day. Brode's bear sits proudly in his room. Please give where you can and say thanks for those you have.