Possible Answers

Sumana saw Dr. Sanders Tuesday and the x-ray showed something earlier ones (apparently) did not. The lamina on the vertebra that the VEPTR is attached to is eroding or damaged. And, the lower right rib appears to have cracked where the other rod attaches. Both these things sound worse than they are. Both are risks of using growing rods. The good news is both areas appear to be healing well and Sumana has been doing better pain-wise.

The other good news is that her upper spine is in good position. Dr. Sanders is VERY pleased with that. My concern about her still 'slumping' to the right is not the big concern I thought it was. The doctor's main goal is to help her straighter her scoliosis curve and that's happening. Since things look good, we're looking at surgery in May. If she has any complications before then, Dr. Sanders will move the date up. However, he feels confident in waiting til May at this point because his objectives are being met.

Overall, good news. Sumana starts PT at my PT office tomorrow. She'll get some special attention for her back and hopefully continue to help her work through her remaining back pain.

We owe you pictures!!!

Well, I think we're still lacking December pictures, but at least we're starting to get you caught up!

By the way, Sumana still is having quite a bit of pain, but she is going to start some intensive PT to address the issues with her back. She'll still get PT on Mondays at the Happiness House, but she'll go an additional day or two to a different PT to get treatment on her back. She sees Dr. Sanders again this week, so we'll see what his next plan is for her. We'll update again next week, with more pictures (I hope!!)

Sincere Apologies . . .

I'm so, SOOOO sorry it's been soooo long. Unfortunately, this time 'no news is NOT good news.' Sumana started out great after surgery, but we've had a rough couple of weeks. First of all, I took her back in on her birthday (November 22), to check on the way her back was 'bulging' or 'sagging' as bad or worse than before surgery. Usually, she comes out straighter and taller, but this time we saw little, if any, improvement. At that visit Dr. Sander's nurse practitioner said things looked good on the x-ray, so the obvious answer was that we didn't get as much benefit from the expansion as usual. This was the last expansion on these rods, but I can't help but wish the doctor had put in new rods THIS time. I'm afraid she'll be having surgery much sooner this time.

Well, pain-wise Sumana did very well: that is until Thursday when she started up with a sharp, stabbing pain on the right lower side of her back. It seems to be at the place where the rods connect on the lower side. So, we were off to see Dr. Sanders on Friday, Dec. 3. Once again, the x-rays showed nothing. The rods look like they are properly secured and there was no sign of infection. However, she's back on the narcotics and she wakes me up EVERY night for meds. If she's not better by Thursday, the doctor wants to see her again.

So, it's been a rough time this time around. Add to that, the fact that Daddy has been in New York City, Philadelphia and Albany for work . . . Sumana really misses her dad (ditto for the rest of us, too!)

We're off to celebrating the Christmas season. Gretchen has a choral concert Thursday, our Williams family get-together is Sunday, the Foster Family party is next Tuesday, and the list goes on. I still have pictures to load, but it takes awhile, so that will have to wait for another time.

New Record

I haven't found the post that I'm thinking of yet, but I think our quickest surgery was 12 or 13 hours door to door. Yesterday we made it down to 10 hours! Sumana's surgery didn't start til almost 2pm, but Dr. Sanders was out to give us a report by 3:40. It was a standard expansion, no new rods needed. The only issue was anesthesia. As always, they had a hard time finding an IV site. We had hoped to get the IV put in before surgery because it had worked out so well for her shunt surgery. (ie: she didn't throw up!) But after 2 hours of prepration, they didn't see a good site and said she needed to use the mask. The good news, though, is that she still didn't throw up! She laid almost flat for her whole recovery, eating and drinking slowly. When she was ready she sat up and got dressed. Then we went home!

Last night was really long. Sumana had to get up almost every hour to go to the bathroom! UGH!! The pain seemed to be more than usual last night, but this morning she seems to have turned the corner. She's been playing on the computer this morning and has gone 5 hours without the serious pain meds . . . just ibuprofen. We appreciate your continued prayers!

Late Monday Surgery . . . .

UGHHHH!!! Poor Sumana! Her surgery is scheduled for 12:30 Monday. What a long time to go without food!! AND . . . it'll be tough to get out of post-op before they close at 8. Sumana doesn't have a PICU room reserved, so I'm determined to go home. I want her to be ready and stable, but I know I do an awful lot of work on a 'regular floor room'. I'd rather be doing an awful lot of work under my own roof!

Sumana has six (count 'em SIX!) girls over for her birthday. The actual day is 10 days away, but we thought she'd enjoy it more now before all the trauma to her back. I'll try to post pictures tomorrow. I hope we can all get some sleep! They're still pretty chatty and it's almost 11pm!!

Fun Visit and busy week ahead

We found out last week that my Aunt Ruth had been moved to hospice care and had requested to see Sumana. So, this morning we headed over to Hospeace House outside of Naples. What a lovely spot (even in a snow squall!!!) Aunt Ruth was so pleased (and surprised to see Sumana. It brought tears to her eyes. It really was precious! We had a wonderful visit and got to hear all sorts of stories. I always enjoy visiting Aunt Ruth . . . but the visits are always very far apart. Aunt Ruth was very alert and talkative . . . very much herself! Sumana flashed her beautiful smile over and over.

This week Sumana has PT twice, gets her stitches out on Tuesday and has her birthday party on Friday. Poor Andrew gets all 4 wisdom teeth out on Tuesday. Greig goes to Cold Springs (near Newburgh, NY) on Monday and comes home next Sunday. Sumana's next VEPTR surgery is Monday the 15th. The good news (sort of) is that this is my first week not working at the library, so I should be a little less pressed for time. Whew! I'm looking forward to being able to catch my breath.

By the way, Sumana's friend, Giana, has her next VEPTR surgery with Dr. Sanders on this Monday at 7:30 am. I know her family would really appreciate our prayers for her and the surgery. Thank you!

OK . . . so there are 34

Wow, I used to be such an exaggerator. Huh . . . . I got to counting Sumana's stitches today . . . 34 total in the 3 sites. So, more than I thought . . . but I'm still impressed with how much hair Dr. Silberstein was able to save. He's a surgeon who knows about girls and their hair!!

Sumana still has had quite a bit of pain today, but the alternating Ibuprofen and Tylenol has worked pretty well. She is VERY weak, so I had her doing some of her leg exercises and 15 minutes of Wii balance today. I guess that's my biggest concern now for her upcoming surgery. We need to help her get her strength back so she can 'go under' yet again. I actually may agree to spend a night in the hospital this time . . . though I'm still trying to catch up MY sleep from our latest adventure.

Sumana will get to stay home with Daddy on Monday and then she gets her re-eval at PT on Tuesday so she can resume her work with Miss Becca on Thursday. She wants to at least go to Sunday School tomorrow, so I guess we'll try. I'm pretty nervous about germs, but I guess we'll go with the flow. If I see or hear anything suspiciously germy, we'll be out of there. (However, Sumana did agree to wearing a face mask if she has to. I already feel bad about her having to cover her shaved head, though . . . I don't want to turn her into more of a spectacle with a mask).