2 Month Anniversary of Surgery

Update 18- 

Jul 12- Today is the 2 month anniversary of Olivia's spine surgery! We returned home from Philadelphia after seeing Olivia's surgeon for her follow up appointment at Shriner's Hospital. The report was great! The team at Shriner's said Olivia is a poster child for her surgery. Her lumbar spine continues to get straighter! She can now swim, and play putt-putt. Boogie-boarding is still on hold as well as starting to hit tennis balls but she can begin to do a few things now.

Her next X-rays will be done in early September here in Tallahassee and then will head back up to Philly in late October/early November. This visit her sister who is now in a back brace will be seen as well. As Olivia continues to heal, we face the future now with her sister.

Thank you, thank you, for continued love and prayers as well as support that continues for us as well!

Beach and a Brace

Update 17-

June 27- update
It's been a busy last couple of weeks. But the best news for Olivia is that her incision has healed and she was able to go to the beach last weekend. Now, she couldn't swim but she did walk along the shore and dipped down into the water. She took a friend with her and I know she was happy to be outside. She was on the beach about an hour, maybe a little longer, but she really enjoyed it.

Today and this weekend, a friend is doing an event and offering some of her proceeds to help the costs surrounding her surgery. Olivia gets to model some clothes which she loves to do. Who doesn't love fashion!

We are just about 12 days out from heading to Philly for her first follow-up appointment. Hoping and believing it will be a good one.

On a side note, Olivia's sister also has scoliosis and has been placed in a Boston brace! Sadly, it seems the road for her too although unsure of what it will exactly be.

My Brave Girl

Update 15- 

June 5 update-

Olivia is a very brave girl. I am so proud of how she handled her pain in the hospital and so far through her recovery. In her mind, it has always been to be better than the day before. She continues to have what her surgeon calls "blips", but she is pushing through. As of late she is dealing with lower left back pain, and some burning in her ribs, which is nerve issues from the manipulation of her muscles in moving them from the bone during surgery. She has also felt far more dependent on others than she would like which has frustrated her. The things we take for granted are difficult for her, but those will get better in due time. Right now, it's nearly summer, school is out, and she wants to be able to swim and go to the beach, but can't. And it will be months more before she can.

On a personal note, I sound like a broken record I know, but we are so appreciative of the calls, notes, cards, and visits Olivia has received. I can't begin to tell you how helpful it is and continues to be as we transition home and Olivia starts to heal. I hope to be back to work full time soon. In the meantime, we couldn't be doing all this without all of you.

Update 16-

June 12-
Olivia continues to heal! At just over 5 weeks from her surgery, she accomplishes new things every day, regaining the ability to do small tasks she hasn't been able to do since before her surgery. This has helped in building back her confidence! Her next goal; wading in a pool. Except for a small bit of leftover scabbing, this should happen soon. It's been hard to recover with all her friends hitting the pool or beach!

Next up will be Olivia's post op appointment in Philadelphia on July 10th!

Roller-coaster

Update 11- 

May 15- What a roller-coaster the last 24 hours has been. We were thrilled she was able to begin a soft diet, but that came to a halt yesterday evening. The morning was great but just after noon she began having a problem with her back drain, the drain that pulls the fluid out of where her spine surgery was. Because of this, the drain will need to stay in place until Sunday. 

She was also weaned from her heavy painkillers and given some things to cause less sedation. She tolerated this OK, but of course it increased the pain she could feel. Last evening around 8:30 she began to complain of her heart hurting. And then of not being able to breathe. As this happened, her heart rate increased to very high. It's a scary thing when your child is crying out that her heart is hurting really bad as you continue to watch her get worse. They had to start meds to calm her and what we believe was actually an anxiety attack, began to lower her heart rate back down. After this happened however, everything that had begun diet wise came back up. Needless to say, they started over with the diet.

Morning brought a decision that she had not gotten sick from pain meds but from anxiety. So they let her have some more solid food.

Today had been great so far. The bandage was removed from her back and we saw it for the first time. It looks amazing!! Then Dr S came by to let us know that he no longer recommends the second surgery scheduled for next Wednesday!!!! We are hoping she is out of the hospital on Monday. She will see him for a clinic visit next week and then we will fly home! Her lower spine, pre surgery a 38.1 curve is now 18!! He believes it may straighten more or should it get worse, only a few degrees!

We are so grateful for this news! And for all of you who have given so much love through prayers, messages and by supporting Olivia's surgery!

Another update soon!

Update 12- 

1 week post-op update; Philadelphia.

Olivia is doing as well as expected. We've had some scary moments with times she said her heart was extremely painful. And sadly, she's had a tough time coming off the anesthesia and post-op heavy painkillers. Sickness has been prevalent.

Olivia was discharged Sat evening and we headed back to the Ronald McDonald house. Her first night was not good. However, she managed to sleep 5 hours straight last night. The most I've had as well at a stretch!

We see her surgeon again Thursday afternoon. There he will evaluate her standing x-rays and will formulate next steps for her. Then we find out when she sees him again at six weeks.

Olivia is super tall! She's is learning to walk more stable now. Her rib cage is slowly moving back where it should have been and muscles that weren't working before, are working now.

Please continue to pray for her to regain strength. Weakness can also be attributed to her lack of wanting to eat, but she must, and walk..

 

 With her Dad and I on the spine floor at Shriner's Hospital for Children before discharge.

 Walking after getting some Gelato in Philadelphia. Still holding on for help.

 Taller than Grandmother now!

Day after Surgery

Update 9-  May 13

Good morning from Philadelphia! Olivia is doing well. Last night was a bit rough as she was awake a lot. She really wanted something to drink and was consistently asking to get up. Her blood pressure dropped pretty low and her respiration was too high, but this morning it has leveled out.

At 1 am she became insistent about drinking and was told not until 10 am or later. She won that battle at 7 am. She bugged the ICU nurse so much that they came to let her stand about 9:30. She was extremely brave. She did not cry, wince, moan in pain. She focused on breathing and getting up. The nurses continue to say her behavior is unusual given the surgery.

They've taken out her oxygen, and arterial line so down to 3 IVs now. She's also walked but I missed it as I went to get breakfast. They did not expect her to do this until later today or tomorrow. 

assisted walking

I'll post another update later or tomorrow. If she continues to do well, she will move from ICU today.

Thanks for all the messages, love, prayers, and support. Means so much!

Update 10-

Wednesday afternoon update- May 14

Olivia was moved from Pediatric ICU to her own room yesterday afternoon. She began walking and did really well. She felt a little unsteady and continues to feel "crooked". Straight feels crooked to her now. Totally understandable.

She finally was given jello to eat and it just turned her around. She felt enormously better before bed. And for the first time got several hours of uninterrupted sleep. Most nights we have been up nearly all night. She settled late, and was up a good bit, but from 5:00 am until nearly 9:30 she slept soundly.

Today has been much rougher. Her doctor told her the next couple of days would be. Her back drain has been an issue today and unfortunately the hope that it would come out today has been turned into a couple days. However just before this writing her morphine drip was removed and oral pain meds have begun. It's now her eating will be so important to keep her from getting sick.

We hope to hear tomorrow or Friday if she will be having the second surgery next week. We are all hoping now that the lower spine responds and there will not be a need for it.

The doctors, nurses and volunteers at Shriner's have been so amazing. And the outpouring of love from friends and family. We love hearing from you and appreciate your continued prayers, love, and support.