Thursday, April 30, 2009

Pathology Results!

Just got a second call from Dr. Tuite...the pathology results showed NO sarcoma! I spoke with him earlier this afternoon and he still hadn't heard anything and thought we would have to wait several more days for the results, but then he called back again. I think he was as happy as we are!

Isabella's First Outing...

Of course Isabella's first outing would be shopping at Target! We got the wheelchair yesterday and I'm glad we had because even sitting in it, she pooped out pretty quickly. The wheelchair legrests are a little long, even on the shortest setting so I have to remember to keep some little pillows in the car that will pull her forward a little. We had fun picking out some new tops to fit over her brace and a new two piece bathing suit and spending some money that Nana and Papa sent. It was a beautiful day and she said she wasn't even sweating under her brace (she wears a cotton cami under it) so that's good...I was worried she'd be drenched but the orthotist said her body would adjust and he was right!
When we got home, she went right to bed for a little snooze!

Tuesday, April 28, 2009

Home Again, Home Again...

Isabella with a new Build A Bear from Caitlyn!
Think she's happy to be home??

A fun bucket of goodies from the Imagine School (where Evan goes and she'll go next year!) a bunch of other gifts!

After seven days (and nights) at the hospital, it feels so good to be finally home! Dr. Tuite reviewed Isabella's xrays in her new brace and thought she looked pretty good...still a little crooked, but he felt it might be a result of pain and muscle spasms and should improve over the next few weeks. We stopped at the orthotics office on our way home for some adjustments to the new brace so it fits really well now.

Isabella was so excited to see the dogs I thought she was going to burst! It was great to be home with our boys and they all did an awesome job keeping the house together and Bruce even put on nice, clean sheets for me! The dining room table was nearly overflowing with gifts and packages that were dropped off while we were gone, so Isabella had a great time opening everything! I can't begin to thank you all and tell you how much it means to Bruce and me to have all your prayers covering us these past few weeks. Many of you we haven't know long at all, but your outpouring has been overwhelming and we feel so blessed!

The next few months will be hard for Isabella since she'll have to wear the brace any time she's out of bed. Her activity will also be limited and the hardest thing for her will be no swimming or boating, though once she heals, she'll be able to get wet. Swimming and going on the boat are two of her favorite things so I know it will be a struggle for her.

Tuesday Update...

Isabella with Elias, Dr. Tuite's resident...Isabella thought it was very cool when Elias told her he played James in the play James and the Giant Peach when he was younger (she was watching it when he came in this morning!)
Isabella with Heather and Devin, two of her neurology Physician Assistants...I think they might be in one of Collin's science classes??

Hard to believe that Isabella's surgery was a week ago today. I'm still in kind of a fog and last night isn't helping much. When we went to bed, we were the only ones in the room, but by 2:00 AM, three new (noisey!) patients moved in. Around 3:00, Isabella was itching like crazy at her incision site. She still had her IV in so the nurse gave her some Benadryl through it. The IV's been in for several days so it was questionable how well it was functioning...after a few minutes, Isabella let us know that it definitely was not functioning because it was burning! So Caroline her nurse, removed the IV and gave her Vicodin and after an hour or so, we both fell asleep, cuddled on Isabella's bed.

This morning, PT came in and showed me how to do some stretching exercises for Isabella's very tight hamstrings. Isabella also walked about halfway around the unit...though she was a little wobbly, she did great and is getting much better at putting weight on her left leg. On the way back, I ran into Devin, one of the neurology PAs. He said they had just finished tumor board this morning where they discussed Isabella's case and her pathology results. They had several doctors consult on it and because they're not in agreement on the resuslts, they're sending it to St. Jude's and Johns Hopkins for a second opinion. Dr. Tuite said to call him Thursday if we don't hear from him before then. Keep those prayers coming as we try to stay positive!

Monday, April 27, 2009

Monday Morning Update...

Lindsey, Caity and Isabella

Yesterday Bruce, the boys and the Johnson's came by for a visit! Bruce brought a big box of goodies from the VeStrands and Isabella said it felt like for Belle and me! Thanks you guys...we miss you sooo much!
No fever last night and lots of sleep for Isabella! The whole neuro gang was in this morning, including Dr. Tuite, who decided that she needs a new brace. The orthotist will come in to look at other options, definitely something longer and taller to give her more stability. Dr. Tuite then wants to see her in a week or so. I love that he's so conservative in terms of not rushing her back to surgery for a fusion...though he did say if we're not seeing improvement in about three weeks, that's something we'll reconsider.
The orthotist came by before lunch and measured her so hopefully we'll get the new brace before noon tomorrow!

Isabella and nurse Jane

Nurse Caroline was with Isabella for three nights

Sunday, April 26, 2009

Sunday Morning...

We thought today would be the day Isabella could go home, especially since she's been movin' and groovin', but she had a fever during the night. This morning she has some wheezing in her lungs so they're going to do a chest xray and some blood and urine tests suspecting that may be causing the fever. Because she's been having increasing pain when she stands on her left leg, the neurologist also wants another xray of her standing in the brace to be sure her spine is stable. He also said she will probably need a larger brace to give her more support.

Just for fun, because we're all not happy about the news this morning, I've included a picture that Isabella had me take last night. It' a BUTT MUFFIN! I told her we should sell it on ebay and be rich!!

Saturday, April 25, 2009

Saturday Evening...

Pretty quiet afterrnoon and evening...went for another walk and even went outside for a little while for some sunshine on the patio! She's walking better and better with me holding her hands though she's bearing very little weight on her left leg, the same leg that was so painful before the surgery. Hopefully that will just improve as her pain decreases. She can get to sitting from laying down in bed with just a little help and is learning to scooch herself forward to the edge. She's eating bites of this and that but still nothing happening. It's so nice to see her back to her old personality...being sarcastic, cracking jokes and singing along to tv show theme songs!

Saturday Morning...

Isabella had a great night and only woke up to take her meds. This morning, PT came by and she walked pretty far with help from me and the therapist. She's still having pain when she walks and is hesitant to put much weight on her left leg, but she's improving every day! She's also started to eat a bit more and is just now finishing up her chicken tenders and cherry Icee! The doctors came in this morning and are very happy with her long as she continues to walk this afternoon and at some point soon has some movement (if you know what I mean!) then she'll get to home on Sunday!

Our friends, the Johnsons came by today. Laurie, Caity and Lindsey stopped in for a little while on their way to Siesta Fiesta in Sarasota. John and Jordan are going on the boat with Bruce and the boys to fish and go tubing! It was so great to see Isabella chatting and laughing with her friends!

Friday, April 24, 2009

Friday Afternoon Update...

After a rough start, Isabella put on her brace and transferred to a wheelchair. We took a little ride around the floor then were invited to the Child Life playroom to build and paint a birdhouse! She really had fun, talking with some other kids, listening to Hannah Montana on the jukebox and then playing air hockey! When we got back to her room, the Physical Therapist was waiting for us so we were off the gym. Isabella worked really hard at standing and taking a few steps to the table, where we played Mancala and Trouble while she stood. Then she took a pretty long walk back to her wheelchair...I am so proud of her! It was exhausting and painful but she did her best!

Right now, she's chillin' in bed watching Disney Channel after finally eating...almost a whole bowl of chicken noodle soup!

There's that smile that's been hiding for a few days!

Friday Morning Update...

Last night after dinner, Isabella received this amazing basket full of things she loves from Michele, Margie and Laurie at our dog rescue! We can't wait to open it up and check out all the goodies inside....THANKS you guys! We LOVE you! Pretty uneventful Thursday evening otherwise, except that Isabella had two IV's removed and a new one put in....which does not a happy Isabella make! She's not eating this morning and has mostly been crying over the IV and the thought of walking today. I think Bruce needs to come back in to take her back around that corner!Isabella with her nurse, Kate yesterday

Thursday, April 23, 2009

Isabella Has Turned A Corner!

Isabella had a long night...she was up quite a bit since she was able to go potty on her own and her pain was still pretty high. This morning she was really nauseous and not able to keep anything down. The pain management team came in and seemed to think it may have been some of her pain meds so by the afternoon, those had been changed. Her physical therapist came in around lunch time and Isabella was able to sit on the side of the bed in her brace. After a few minutes, she transferred into the bedside chair and sat there for a few hours! It was pretty uncomfortable at first, but once she took her new pain meds mashed up in a popsiscle, she was feeling much better.
Bruce came by and I was able to go home, visit with the boys, take that much needed shower and even slept for about an hour!
Apparently while I was gone, fun was had by all! Isabella and Bruce played TV Bingo and she won a beat box toy, a stuffed tiger and a baby doll! She also finally ate something...a hot pretzel and an Icee, which she kept down! Then she got to watch the new, still in theatres Hannah Montana movie! How cool is that?
Isabella and her awesome surgeon, Dr. Tuite and one of his staff

The boys and our neighbor, Caitlyn came back with me to the hospital and they just left to go out to dinner at Outback with a gift card! She just ordered her dinner and is hanging out watching Suite Life on Deck. Hopefully she'll get lots of sleep tonite! Everyone else in our quad room went home today and a new, sweet little toddler moved into the bed next to her.The plan for tomorrow is for PT to come back and get her walking!
Isabella with her ICU nurses, Steph and Michelle (the Mandy Moore look-alike!)

Caitlyn, Isabella and the boys

Wednesday, April 22, 2009

A Visit from Tucker...

This afternoon, Isabella got a visit from Tucker, a therapy dog who regularly visits the kids at All Childrens. Tucker was dying to jump on Isabella's bed and chill but she was feeling pretty yucky so he was content to get some love while sitting next to her bed.

Isabella has had a rough day and the doctors told us that today would be all about pain management. She had an xray with her brace on then went for an MRI, which she had while sedated which was good. She had a visit from Pastor Jason, who brought her a big bag filled with her favorite snacks and art supplies! She's fast asleep now while we wait to get transferred out of ICU, but unfortunately they're pretty full on the med/surg floor so we won't be in a two person room...we might be in a room with three other patients. Have a feeling it will be a long night!

Wednesday Morning Update...

I think Isabella had a good night...she wasn't crying in pain at all even when she was turned. This morning was a different story! She didn't want to be moved, touched or even talked too...she had a permanent frown on her face that I rarely see. She finally fell back to sleep after she got three of her pain medications (which were due right at the shift change...never a good thing). The neurosurgery PA's were in and moved her around a bit which didn't help things. She's scheduled for an MRI this morning but we're not sure what time, which stinks because it means no food or fluid until it's over. Poor baby is starving! Later this afternoon, she'll have an x-ray with her brace on, which is supposed to get here around lunch time. Hopefully we'll be moved out of ICU and onto the regular floor after her MRI but we'd be fine staying here too, since the nurses each have only two patients.
Bruce just got the boys off to school and will come here later today with them if she gets moved off of ICU. I could use a nice long nap and a hot shower about now, but I'm afraid that will have to wait.

Tuesday, April 21, 2009

Tuesday Evening Update...

Isabella is settled into ICU for the night and will be here till at least tomorrow afternoon. She was really groggy and wanted a soda in the worst way when she woke up in recovery! She's on some heavy duty pain meds which is a good thing because her back is spasming uncontrollably. She's on Valium, Morphine, Tylenol with Codeine and one other pain med every three hours. She's had water, some sprite and ate a few graham crackers so she'll be ready for breakfast in the morning! The orthotist came in and measured her for the hard shell brace that she has to wear anytime she's out of bed. She ordered the multi-colored hearts version of course! Her incision looks really great, despite being at least six inches up and down. Her roommate in ICU is super sweet and no stranger to All Children's. She's 15 years old and her mom told me that her heart is completely backwards. She's had several operations and has been at All Children's over 30 times...eventually she'll need a heart transplant. Makes us count our blessings!
Speaking of blessings, thanks again for all the prayers...we've felt every single one of them! Thanks Laura for the delicious chicken noodle soup (Bruce promised to save me some!). Thanks to the Strobles, the Wilsons and the Lersch's for taking care of the boys over the last two days and to Pastor Jason for bringing Evan some Chik-Fil-A for lunch at school today...I know he LOVED that!
Now to try to catch a few hours in the most uncomfortable chair/bed ever in the coldest hospital I've ever been in!

Surgery Update...

Dr. Tuite just came out and said they were finishing up. He feels that they got most of the tumor out and it appears to be benign, but they'll send it out for pathology and we'll get the results in a week to ten days. He also thought that her spine looked stable enough to avoid the spinal fusion (with pins, etc) and she'll just wear a brace for a few months. She lost very little blood and did great in surgery! Prasie God! We've felt covered in your prayers all morning!

Surgery Has Started...

We got to the hospital at 7:30, but didn't get taken back to holding until 1:30. Her OR nurse just came out to let us know that they just got started. She was quiet on the way here but wasn't nervous at all. We were at the hospital for less than an hour and she already scored two stuffed animals!

Her admissions nurse, Sheila was so great with her and really funny! Isabella was very brave getting her IV!

Being silly with Sheila!

Monday, April 20, 2009

Tomorrow's the Day...

Isabella's surgery was pushed back to 12:00 on Tuesday and we have to be at the hospital by 7:30 so they can do some lab work. The surgeon said the surgery itself will last about 2-3 hours but could go longer if they decide her spine is unstable after they remove the tumor. If it's unstable, they may add pins and screws but they really won't know till they get in there. He expects her to be in the hospital about a week and on her feet by the time she goes home. She'll be at home, but not in bed, for a few weeks afterwards and won't be allowed to go back to school or be involved in any activity (she may be getting a home teacher too).
She's fast asleep in our bed tonite...not really worried about going tomorrow though she's nervous about the IV, which was the worst thing about her last visit.
Please pray for peace for her, her siblings and Bruce and I. Please pray that the surgeons hands are guided by God to heal her. I'll try to post once she's out of surgery.
Thanks to all the friends who have sent cards, meals, helped with the boys and covered us in prayer!

Sunday, April 19, 2009

Our Last Night with Chelsea...

This afternoon we took Chelsea to the airport and she's on her way back to Biola in California. Despite all we had going on this week, I think she had a good spring break! We didn't get to do everything we wanted, but at least she and Isabella got some good "girl time" in! Last night, we went out to dinner then went to Lido Beach to enjoy the sunset!

Thursday, April 16, 2009

Girls' Day At the Beach...

Isabella's fever and headache were gone this morning so I kept her home from school and we took advantage of the beautiful day and went to Anna Maria Island! She missed the last trip to the beach because she and I were in the ER and who knows how long it will be till she can go again so this was a special day!

We built a few sand castles, collected lots of shells and she and Chelsea jumped the waves! We even saw a large group of manatees that Chelsea swam out to trying to get a photo!

Enjoying lunch at our favorite beach restaurant, the Sandbar!
Isabella goes back to school tomorrow and Monday then we're off to All Children's Hospital bright and early Tuesday morning! She's been in really good spirits and has loved spending "girl time" the past two days! She's also loved all the cards she's getting in the mail!

Wednesday, April 15, 2009

A Surgery Update...

While we were at Magic Kingdom, I got a call from Dr. Tuite's office (Isabella's surgeon) letting me know that her surgery was rescheduled for Tuesday. He wanted to be sure we weren't bumped and that was a possiblity if kept the Friday surgery date. Considering Isabella still has a fever, they probably wouldn't have done the surgery on Friday anyway, so a few extra days
to have some fun are fine with us!

A Day At Magic Kingdom...

Today we had a girls' day and went to the Magic Kingdom! It was a beautiful day and since it poured yesterday, the park was really crowded although the lines moved pretty fast.
Isabella and Chelsea explored the Swiss Family Robinson Treehouse Isabella loves the Tiki Room Bird Show! Shortly after we got there, Isabella was complaining of a headache, had a fever and was really tired so we got her a wheelchair and she pretty much went downhill from there. We tried a few calm rides.

Poor baby tried to force a smile on the Jungle Cruise. Hit a few more rides then had lunch...Isabella didn't even make it past her soda before she got sick. At least she got a new Tinkerbell outfit from the experience!
A very short burst of energy while we waited for the parade...who can resist a hula hoop?
After snoozing on line for the Buzz Lightyear ride, Isabella just couldn't hold it together anymore, so we hopped on the tram and decided to go home.
Hopefully she'll feel better tomorrow!