Scoliosis - the early days - Philadelphia

We had a good trip to Philadelphia. A did great on the ride up and we stayed at the Ronald McDonald House in Wilmington, Delaware on Tuesday night. We went in to Phila. on Wednesday morning for her appt.

The doctor we saw was very thorough, and looked at her, her x-rays and MRI. His opinion was similar to that which received in Chapel Hill, except much more extensive. He does feel that she needs surgery, but a more in-depth surgery than what had been described to us earlier. He wants to fuse 5 of her vertebrae, but go in from the sides and from the back, and possibly the front. He wants us to get a CT scan, which he thinks is better for looking at the spine than the MRI, and then come back to Phila. in July to see the doctor who would actually do the surgery.

He did share with us two other options for surgery, but they were more high-risk, and did not guarantee any better results. One of those would involve re-sectioning the vertebrae that are fused together (with the possibility of them refusing) and may only correct her curve by 5- 10 degrees. The other option involved putting "growth rods" in her spine. As best as I can understand, there is no low-risk way to correct her curve, we can only stop it where it is at.

Our next appointment is with a specialist in Charlotte, next Wednesday, July 6. We would go back to Philadelphia on Friday, July 22 if that is the route we want to take. I think L and I both would rather have her surgery in NC, but we will just wait and see.

Thank you all for your emails and prayers. I know that I witnessed a miracle when I saw a 21 month old ride for 8 hours and did not cry one bit. (She did make up for it that night when she did not want to go to sleep in her pack-n-play, but that was OK.)

A side note to the story is how wonderful the Ronald McDonald House is. We tried to get in the house in Phila. but they were full, so we called the house in Delaware. (Our other option was a house in Camden, NJ, but I had just heard a report on the news that described Camden as the worst city in the country as far as crime, so.....) The house we stayed in has 50 rooms. It's basically a really nice hotel, but with a homey feel to it. There was a dining room, kitchen, living room, library, playroom - you get the picture. We arrived at 5:00 and were told that dinner would be ready at 5:30. Dinner is provided to the families each night, if you like what they are having. I'm thinking that different groups come in and fix it. There was a "treasure chest" room that each child could go in and pick out a new toy as a prize. The cost to us to stay that one night was $15.00. The only thing we had to do was clean our room as we were checking out.

So, the next time you go through the drive-thru at McDonalds and you see that little plexiglass box asking for donations to the Ronald McDonald house, know that it is money well spent. If your SS class or other group needs a service project, there is a house in W-S near Brenner's Childrens Hospital that I'm sure could give you a list of things they need done. I did go to their website last night and they have a wish list on there.

Scoliosis - the early days

We took A back to the dr. in Chapel Hill last Thursday to get the results of her MRI and renal ultrasound.

Her kidneys and bladder were fine, as well as her spinal cord. The MRI confirmed what the dr. saw on the x-rays, which is several of her vertabrae are fused together on one side which is causing her curve. His recommendation is to do minor surgery now by going in through her back and fusing those same vertabrae on the opposite side, and also fusing one above and one below the curve. This will merely "arrest" the curve, and will not correct it.

She will require more surgeries later, but he can't tell us how many, what type or when, which is extremely frustrating. Maybe he really won't know until she grows more.

We are scheduled to see a specialist in Charlotte on July 6 to get his opinion. The doctor in Chapel Hill said we needed to do the surgery he is proposing in the next couple of months, so we'll see what the guy in Charlotte says we should do.

Please continue to pray for God to give us wisdom on how to proceed, and that He will make it clear to us what is the best for A.