Ups and Downs

Annie is 2 1/2 weeks post-op and has been doing remarkably well this past week.  She surprised us by no longer needing her prescription pain meds after about 2 weeks post-op!  We have learned that recovery from this spinal fusion has been SO much easier than her kneecap removal surgery recovery earlier this year!  We are so grateful that Annie isn't requiring any braces and isn't in a position where she'll develop more pressure sores like she did with her kneecap removal recovery.  We are still getting used to moving her without her back curling up--she stays stiff and rigid like a board now with those rods in her back.  But generally, I'd say Annie is almost back to her usual self since surgery.

However, this kid just can't catch a break.  Although her surgical recovery is going very well, about a week ago Annie developed an upper respiratory tract infection that is continuing to linger.  Last Sunday she began vomiting, so we naturally suspected a UTI--the most common reason she vomits.  We had her checked out the next day but everything came back negative.

With all the congestion and phlegm in Annie's throat, we now believe she was vomiting because she was gagging and choking on so much congestion that she couldn't clear on her own.  We are back to keeping Annie's suction machine by her constantly and that has helped with the vomiting.  She is often unable to have a productive cough on her own, so when she does start to cough, we run to help her out with the suction machine. 

Annie's seizure activity has also increased the last few days.  She is no longer on the valium for muscle spasms in her back, so we expected a slight increase in seizures as we stopped the valium.  The type of seizures she's been having lately are her giggling seizures, where she'll just giggle and giggle for no reason.  They are bittersweet--it's so fun to watch her smile and hear her adorable laugh, but we know that it's only a seizure causing it.  This morning one of her giggling seizures turned into a grand mal seizure, so that wasn't fun at all, but it stopped pretty quickly on it's own without the use of rescue meds.

To say we are exhausted would be an understatement.  Annie slept pretty well when she was on heavy pain meds and we would typically only be up with her once or twice in the night to give more meds and change her position.  However, since she's been sick over the last week, she seems to cough all night, and continues to require suctioning regularly throughout the night.  By about 4:00am most mornings Justin decides to just stay up with her and sit with her in her room.  A couple nights the congestion has been so bad that we've had to get Annie up in her chair just so she can breathe better.  That has seemed to help her, and she's enjoyed watching TV in those early morning hours, but it has left us feeling beat! 

Overall, we are thrilled with the results of Annie's surgery and how quickly she is recovering from such a major surgery with such extreme blood loss.  We feel so blessed that the surgery ended up happening at a time when other obligations were at a minimum and we have this Christmas break to try to rest at home and take things easy.  Heavenly Father is definitely guiding our family and sending so many blessings.  We have so much to be thankful for!

We continue to be amazed by the outpouring of love we have received!  Several people continue to ask about Annie on a regular basis which means a lot to us. Several teachers at Annie's school have brought us home-cooked meals as well as gift cards for take-out meals!  People from our church have also helped to bring in meals and watch Molly and Lexie for us.  Even a friend in Texas wanted to bring us a meal, but is obviously too far away, so she sent us a restaurant gift card!  We are so touched by all the kindness we have received.  We have such generous and thoughtful friends who are truly helping to lighten our load!  It's so helpful to not have to worry about meals when we are so exhausted!  Thank you to everyone who is helping us and has continued to keep Annie in your prayers!  We are so thankful for all of you!

First Post-Op Follow-Up

We met with Annie's surgeon this morning for her first follow-up. He was very pleased with the incision and says we can keep the dressings off as long as the incision doesn't get irritated by her clothes or chair. 

The surgeon said the amount of pain she's still having and the amount of pain meds she's still requiring is fairly normal. Hopefully her pain will start to ease up just a bit later this week. But for now she's still getting Valium and Hycet around the clock. 

Our most exciting news is that we can now get her incision wet! We tried using a dry shampoo for her hair earlier this week, but that stuff really doesn't clean much. I think Annie will feel and look like a new girl once we can give her a real shower later today--we'll just have to load her up on pain meds before we do it!

She Grew!

We measured Annie this morning for the first time since her spinal fusion.  She "grew" about 9 inches just by having her spine straightened!  Just prior to surgery Annie was 49 inches tall--down from 54-55" about a year ago.  Her spine had compressed that much in the last year, making her actually lose height.  But today Annie measures about 58 inches tall!  With her spine fused, she should no longer grow any taller in her trunk, just possibly in her legs.  We continue to be amazed at how straight she looks!  Annie is doing relatively well--we just have to stay on top of her pain meds.  We're also still working to get her GI tract fully working and back to normal.  But Annie is talking to us more and is glad to be home!

Annie is Home!

Annie was discharged early this afternoon! She talked to us almost the whole time we were driving home. She is definitely happy to be out of the hospital! 

Keeping on top of pain meds around the clock is going to be vital, but as long as we keep up with them, Annie seems to do pretty well. She is tolerating her wheelchair a little more each day too. 

Thank you so much to everyone for keeping her in your prayers. She is definitely one tough cookie and I know all the prayers said on her behalf have blessed her life. She still has a long recovery ahead of her but we are so grateful to have her back home with us. 

Spinal Fusion "After" X-Ray Image

Annie had her x-ray this morning to check out everything in her back. Here are the before and after pictures. ...Pretty dramatic! Her curve has gone from 89 degrees to about 25-30 degrees now! That's a much better correction than we anticipated getting!

"Before" at 89 degrees

"After" at 25-30 degrees!  Fused from T2 to her pelvis.  Lots of extra lung space now too!

One Step Back Again

Annie is continuing to do fairly well and some of the doctors are even pushing to send her home today. However, last night Annie spiked a fever. The cause is still not known, so we are extremely hesitant to take her home with an unexplained fever. We suspect it might be due to a UTI from the two foleys she had as well as all the urine retention. So hopefully they'll get that all checked out soon. 

Otherwise, everything else is headed in the right direction. She had an X-ray of her back this morning so hopefully we'll learn what degree of curve she now sits at soon. She is tolerating her feeds better and she has transitioned off of IV pain meds. Hopefully we'll get some answers about the fever later this afternoon. 

Just Hangin' Out

My posts are slowing down a bit today because there just hasn't been much to report.  Annie tolerated her pedialyte well yesterday so she started on her formula last night.  However, that didn't go so well and Annie threw up a couple times.  We turned the rate down on her pump and we're now working to gradually increase her rate up to her normal speed.

Annie did finally start voiding on her own and has had a couple small BMs only with the help of a suppository.  All the miralax she's getting doesn't seem to be working quite yet.  We still anticipate that much more is coming.  Her tummy is still a little distended, so hopefully things can get started moving soon and help her feel better.

Annie was in her wheelchair yesterday twice, once for 40 minutes and then later for an hour!  That's a lot longer than they anticipated she'd tolerate on the first day.  Today so far she's been in her chair for about an hour, but was pretty fussy for a while.

Annie is just on valium for pain.  They stopped her celebrex last night and have transitioned her IV valium to oral valium--one more step towards going home.  The hospitalist mentioned that she's not receiving any care here that she couldn't get at home, so we think he's suggesting that we could be discharged, but I don't think she's quite ready yet, and it's ultimately up to the orthopedic surgeon anyway, who usually sends his spinal fusion kids home on Saturday or Sunday.  We thought Annie might take a little longer since she had a slow go at the beginning of her recovery in the ICU, but since then she's been doing pretty well.

She seems to be mobilizing the retained fluids more today and doesn't appear quite as swollen.  We're hoping for those fluids to come off her so her weight can get back to normal.  Our biggest concern with having her at home is lifting a 76 lb kid without assistance while trying to be extra gentle with her sore back.  But I think her weight will start to drop over the next few days.

The pressure sore on her head developed a blister last night and that blister popped, so her sore doesn't look too great right now, but that's all just part of the healing process.

Annie is becoming more alert and awake and seems to be gaining more strength.  Today she enjoyed looking at her beads and even got one hand up to play with them just a little bit.

Look Who's Up!

We met with PT and our medical supplier earlier today to get Annie in her wheelchair for the first time and make more adjustments to Annie's temporary seat back.  (A new one will have to be made since the new shape of her back will no longer fit in her old molded seat back). Together they transferred Annie to her chair and she was in it for about 5 minutes while they noted adjustments that had to be made.  She tolerated it really well and actually fell asleep.

Later this afternoon, our nurse helped me get Annie in her chair again.  The transition didn't go quite so smoothly this time.  Two-person lifts are harder than doing it alone, but since Annie is a whopping 76 lbs with all her fluid retention, there was no way I could comfortably lift her myself and be as gentle as I would need to be with her right now.  But once she was settled in her chair she did great and even tried playing with her beads just a little!  She stayed in her chair for 40 minutes! But was asleep for most of that time.  After we got her back in bed, she fell right back asleep from all the hard work! 

We're working to get her sitting up more so she can start to tolerate her chair.  She is disconnected from everything now except for her regular feeding pump she's always attached to, and the compression wraps on her legs.  Since removing the foley, she still is unable to void on her own, so we'll be straight cathing until she can void on her own.  No more BMs as we anticipated, so we're still working to get things up and running.

Not thrilled to be sitting up, but tolerating it well enough.  Doesn't she look so much straighter and taller?!

Moving in the Right Direction

Last night was fairly uneventful.  They had to take away her high-tech air bed since it was needed in the PICU, but this morning they were able to get her a new one so she's comfy again.  Annie slept well, but woke up at 4:30am upset.  I thought she needed more pain meds, but after a position change and removing her CPAP she calmed right down and went back to sleep.  I'm still surprised that all she's on is valium and celebrex!  We'll probably start transitioning from the valium to hycet in a day or two.

It's been a busy morning this morning!  Annie's foley became disconnected somehow in the night, so while we were up, we also changed all her bedding that had become soaked.  Her hemoglobin is down to 8.6, but since she's not bleeding from her incision anymore, they suspect that to start coming up soon.

TMI warning: The priority this morning has been working for a BM, so she got a suppository since all the miralax doesn't seem to be moving things along, and she finally had a small BM.  We expect much more to be coming later today.  That also means that we can start feeding her again.  We're starting with pedialyte again and will slowly transition to her formula at a slow rate.

The most shocking thing today was having her weighed.  They brought in a hoyer to weigh her which was nice, and we learned that Annie is 75.5 lbs!! She was 66 lbs the day of surgery.  That just goes to show exactly how much extra fluids (and poop) she's retaining!  No wonder I've been having such a hard time just sliding her up in the bed!  I thought she seemed heavier than usual, but I never would have guessed she was THAT heavy!!

The orthopedist just came by to visit and he was NOT happy that they put the foley back in yesterday and ordered it to be removed immediately.  The longer it stays in, the higher the risk of an infection developing.  I agree with him, and now that bowels are moving, she ought to be able to start voiding on her own.  If not, they can always straight cath her.  Otherwise, he said she's looking good and we're just beginning to cross off items on the "worry" list!

The PT and medical supplier should be by any time now to help me get Annie up in her wheelchair for the first time and to make adjustments to her temporary seat back.  We'll also discuss long-term options so the order for her new seat back can get started. Overall, it's been a good morning.  Things are beginning to look up for now.  We really appreciate all the continued prayers!  I know Heavenly Father has been watching over her.

Out of the PICU and Sitting Up!

Today has been really great in some regards, but Annie's has also taken a couple steps backwards.  Our most exciting news today is that Annie was able to bust out of the PICU and get transferred to the IMC floor! 

Annie also sat up on the side of her bed twice today for about 5 minutes each time.  The first time she slept through the whole ordeal, and the second time she was awake and content!  It almost feels like I'm getting my Annie back a little bit!

Amazingly, her pain has been controlled by just valium and celebrex!  She is one tough cookie with an incredibly high pain tolerance!!  They've quit giving her morphine so that her GI tract might start waking up quicker.  And although her hemoglobin was down to 9.7 this morning from so much bleeding last night (they transfuse at 7), they ended up deciding to NOT give her iron because of her GI issues.  She received a hefty dose of Miralax again today which made her throw up a bit.  But hopefully we'll get things moving for her soon.

Earlier today the orthopedist came to check on Annie and I asked what degree of curvature he thinks her got her spine to.  He won't know for sure until they do some follow-up x-rays, but he believes he got her to "somewhere in the 40s".  So we are thrilled about that.  We're even more thrilled to see her sit up on the side of the bed and notice how beautifully straight her curve is!!  It gets me choked up seeing her like that and it's already a confirmation to me that this was definitely the right choice for her. 

Annie is still swollen all over, but not nearly as bad as yesterday.  She has been able to open her eyes wider today. At one point when her valium was beginning to wear off today and she was becoming more awake and alert, we held some toys up for her to look at to test her vision a little bit.  Since there is a risk of blindness with this surgery, we've been eager to test her vision, but haven't been able to until today since she hasn't been able to open her eyes and has been asleep around the clock.  Fortunately, Annie was able to see the toys.  She tracked them as I moved them, although her response was slightly delayed which is understandable with her sedating meds.  One time she woke up for just a couple minutes today, but it appeared that she was focused on the TV and clearly watching it, so we are breathing a big sigh of relief.

Here are some pictures from late this afternoon.

Annie woke up for the ride up to her new room.  She looked out the window a while and then fell back asleep.

Justin and I helped her sit up for a few minutes this evening.  Look how straight she is!!  I can't believe how beautiful her back looks!! (Remember the before pictures?)  Her back seems so stable and solid now and she sat up like a pro!

The orthopedist said he couldn't fix her rib hump very well and told us post-operatively that it's still there but just more rounded now and not so pointy.  But I think he did a GREAT job with the rib hump.  I'd say there is dramatic improvement!  I'm so happy to see her new back!!  I love it and I'm just so happy for Annie and that they could do such a good job!

Annie is definitely one tough cookie!  She sat up tonight without any complaints and not even a grimace!  However, she did just receive a new dose of valium just prior to this.  She was awake when we first sat her up, but then promptly fell back asleep.

Oh, how I love this girl.  What an amazing example of strength and enduring patiently through tough times.  She is my hero.

Removing the Drain and Changing the Dressings

They just removed the drain from Annie's back.  It was a thin, long tube about the diameter of a coffee straw that ran up nearly the full length of her back to help drain blood.  Then they removed the dressings to check the incision and apply new dressings.  The old dressings were rather thick and were completely saturated with blood.  It's nice to get those off and get fresh ones on.  Her incision runs from the base of her neck all the way down to her gluteal crease, but it looks really good.  They expect it to continue to ooze for a while, but say that it should stop fairly soon.

Annie is still not voiding on her own, so instead of continuing to have to straight cath, they are putting the foley back in.  They'll try to remove it again tomorrow and see how she does on her own then. They are also stopping her feeds for another day and just going back to IV fluids since Annie's bowels still aren't working.  They'll give more Miralax today and give her more time.

The word on the street is that she'll be moving up to the IMC floor (intermediate care) as soon as a bed is available up there.  We also have the green light to get her up in her wheelchair.  I'm not sure she'll tolerate that very well, but it's really important to get her sitting up to help prevent pneumonia, so we might do that later this afternoon or tomorrow morning.

Taking One Step Back

Since Annie's stomach is becoming distended, they are putting a hold on her feedings.  She's going back to IV fluids and we'll try more feedings a little later. 

Annie is continuing to bleed quite a bit, so her hemoglobin is down to 9.7 this morning--it was 12.5 yesterday.  (Transfusions are usually required around 7.)  So they are starting her on iron and continuing to monitor that. ...Just one more thing that is going to slow down her bowels. :(

Wednesday Morning Still in the ICU

Justin took his turn sleeping in the PICU last night then headed off to work early.  Last night was fairly uneventful.  She came off the oxygen and used her CPAP overnight and continues to keep her sats in the 90s today on room air.

Her pain is being pretty well managed, but it's also keeping her pretty sedated.  She is failing to urinate on her own, so they are having to straight cath her every few hours.  She's receiving a bladder scan as I write this.  She also hasn't had a BM in about 5 days so they are giving her another dose of Miralax today to try to get things moving again.  I'm a little worried about a possible explosion since her incision runs right down to her bottom--keeping that incision clean is vital to preventing infection.

Annie tolerated her pedialyte well last night, so they started her regular formula at a slow rate and this morning she's worked up to her regular rate.  So input is going well, but output not so much.

The swelling in her face has gone down ever so slightly, but it is still difficult for her to open her eyes.  The pressure sores on her hips have disappeared, but the one on her forehead still looks pretty bad.

The drain from her back is still producing about 50-60cc of blood about every 12 hours, so they are checking her hemoglobin to make sure she's not losing too much blood.  The bleeding has increased since yesterday, but they suspect that's because she was a little more upright in her bed yesterday and actually sat on the side of the bed for a couple minutes too.  The plan is still to remove the drain later this morning and change the dressings that have become saturated.  And the talk is that by later this afternoon she'll be transitioned to an intermediate care floor, which would give us a little more privacy and a solid door to her room!

Visit With the Anesthesiologist

The anesthesiologist that worked on Annie during her surgery came to visit with us for the first time since surgery.  We have mistakenly been telling everyone that Annie received 4 units of blood during the surgery, however, the anesthesiologist clarified for us today exactly what Annie received and we were a little blown away. 

Here's what Annie received throughout the 9 hour surgery:
- 5 units (nearly 10 cups) of blood
- 2 units of plasma
- 1 unit of platlets
- 1200cc (5 cups) of her own recycled blood from what they suctioned out of the wound

The anesthesiologist said that they essentially did a full-body blood transfer on her.  Annie's blood pressure was extremely low throughout the whole procedure and they even kept the OR at 80 degrees to help with her blood coagulation, since she just didn't seem to be clotting well.  The anesthesiologist expressed exactly how difficult of a case it was and that she went home utterly exhausted physically and mentally.  We thanked her profusely.  We are so grateful for good doctors that care for Annie.

Some Attention on Sisters... And an Update on Annie

We interrupt our hospital updates to bring you Lexie and Molly.  (Keep scrolling for an update on Annie.) Molly and Lexie are superhero sisters and definitely deserve to be recognized during this challenging week.  They have been fabulous at helping at home and being awesome sisters.  I love seeing how much they love and miss Annie while she's away.  They really want to visit Annie in the hospital, but we're best to wait until she's out of ICU. I'm truly blessed with wonderful daughters!

A few weeks ago Molly came home from her routine vision screening at school with a note telling us that Molly should have her eyes checked.  Since she hasn't mentioned anything about not being able to see well, we were a little skeptical.  But I took her in, and sure enough, she needs glasses!  She picked two pairs and she was able to get them today.  She's pretty excited and says that she can't believe all that she's missed out on!  Apparently she can see much more detail in things than before. (Apologies for the blurry pictures taken on my phone, but I think she's still pretty cute.)

Today was also Lexie's birthday.  She turns 6 today and has had a super day.  We celebrated with two different parties earlier, before Annie entered the hospital.  It's hard to believe my kids are getting so old, but Lexie told me today that she is still my baby even though she's big now!  What a sweetie!

 

Now to let you all know about how Annie is doing today.... After Annie was extubated this morning, the main focus has been pain management.  They started her on morphine, as well as valium, and hycet.  She's been a bit more agitated today, but we think they've finally found a combination of meds that seem to help her relax.  She is still asleep most of the time, and we haven't seen much of her eyes.  She is still very swollen.  Earlier today they removed her arterial line and her foley.  

The orthopedist came by again this afternoon and said we'll remove the drain from her back tomorrow morning and change all her dressings over the incision down the full length of her back.  She is still bleeding through her dressings a bit, as well as out the drain, but they expect that to slow down here soon. 

The orthopedist also instructed us to get her sitting up on the side of the bed once or twice today.  They waited until her pain meds were in full force and then sat her up on the side of the bed.  She did pretty well and actually fell asleep while Justin was holding her up.  Getting her sitting and upright is important to help prevent pneumonia.

They started some pedialyte this afternoon and then started her on her regular formula at a very slow rate, so we'll see how she tolerates her feeds, and slowly start to increase her rate.  Bowel function is also becoming an issue, but they are starting to give her meds for that as well. She's also continuing to receive antibiotics to help prevent any infection from developing.

The original plan was to move to a regular floor today, but Annie will remain in the ICU again tonight and if all goes well, she'll transfer to a regular floor tomorrow.  Two nights in the ICU isn't too common, but the orthopedist says it sometimes happens and we better just play it safe.  But generally, she seems to be doing as well as can be expected--it's just going to be a long recovery.  Thank you so much for all your messages of love and support.  It's heartwarming to receive so many inquiries about her and notes letting us know that Annie is in your thoughts and prayers.  She is definitely one loved little girl!  Thank you!

Annie is Extubated!

Good news!...  They just removed the breathing tube and Annie's O2 sats are at 100% without her CPAP--just a little oxygen support!  She's needing a fair amount of suctioning, but that's expected.  The not-so-great news is that she seems to have gotten so agitated that she's having seizures now.  But her eyes are as open as they can be with the swelling.  Fentanyl has been stopped and morphine is on its way!

Monday Overnight/Tuesday Morning Update

Annie continued to do as well as expected overnight last night.  I, on the other hand, am clearly remembering how hard it is to pretend to sleep in the ICU!  But I think we had a much calmer night with her on the ventilator than we would have had otherwise. 

Several nurses were in about every 30-60 minutes to check on Annie or suction out her breathing tube and also do an x-ray.  They also continued to monitor her bleeding and blood gases throughout the night as they gradually lowered the setting on the ventilator. Pressure sores on her hips have improved dramatically, but the one on her forehead is still pretty bad.  Annie is on an air hospital bed which I thought was just an air mattress to help prevent pressure sores, but the nurses actually came in several times to turn the bed on!  It actually circulates air in a wave pattern so that pressure gets redistributed regularly over her body.  They have the air-flow in the bed run for 10-20 minutes or so at a time and repeat that about every hour or two.  It's a pretty high-tech bed!

Yesterday there were some concerns about her red urine and having too much blood in her urine.  They said that can be a sign of an allergic reaction to the blood transfusions she received.  It gradually turned less red and more orange and now they believe that there's no blood in the urine, but she is just dehydrated due to all the fluids she lost yesterday during surgery.  The color continues to very gradually improve.

Annie's ventilator was at a level of about 15-20 last night and overnight they've been able to wean her down to a level of 6.  They did a chest x-ray in the night which looked good.  So they plan to continue to wean her down on the vent this morning until it is down so low it is more like a CPAP setting.  They'll monitor her O2 sats and blood gases and if she's managing to breathe well on her own on that lowest setting then they'll extubate her.

Overnight Annie began bleeding through the dressings on her back, but the orthopedist just wants the dressings reinforced for now and he'll check back with us in a few hours.  She still has her drain in place which is collecting blood from inside the incision in her back, but it is only draining her lower back and her upper back is bleeding through to her sheets.  The doctor suspects that bleeding to continue over the next couple days.  They're monitoring her hemoglobin which looks good now at 12.5.

They stopped Annie's blood pressure med--she's hanging out around 70/50 on her own now.  She's still on Fentanyl to keep her sedated and control her pain, but she is starting to stir more and gets agitated when touched, pulling a grimace on her face like she is in pain. We'll be working harder to manage pain today as she's transitioned off of the Fentanyl and on to other pain meds that are less sedating.  She can't cry with the breathing tube in, but her face lets me know she's not comfortable at times.  It's so sad to see and I just feel so helpless.

Annie opened her eyes just a tiny slit just now while she was agitated from being touched.  Her face is still very puffy and her eyes are nearly swollen shut.  It was hard to tell if she could see anything with them open just ever so slightly.  I'm anxious to have her open her eyes again and try to get her to look at and track a silent toy.  One risk of surgery is blindness, but we still don't know the condition of Annie's eyes now.  With all the swelling, it will probably still be a while before she opens her eyes and we get a good sense of her vision.

Annie required a fair amount of suctioning out of her breathing tube in the night and continues to need suctioning this morning.  But generally I'd say she's doing fairly well given the circumstances, but easily gets agitated.  She's stable and vitals look good, but we've got to get her off the ventilator and get her sitting up today.  The orthopedist checked on her this morning and gave nurses permission to sit her up either on the side of the bed or in a special chair from the PT.  The original plan was to get her in her wheelchair today and have the medical supplier make more adjustments to her chair, but she's not in any condition for that today, so maybe we'll try for that tomorrow.

Today's exciting news back at home is that today is Lexie's and her grandpa's birthdays!!  It's fun that they get to be together to celebrate. I'm grateful that they are here to shower Molly and Lexie with attention and love. Justin is also administering his final exam this morning in his Pharmacokinetics class, but after he's done making his students cry he should be able to work from the hospital after that.

Admitted to the PICU

Annie got settled in the PICU around 5:30pm, and we finally got to see her.  Her face is really swollen as expected, from laying face down all day long.  She also developed some pressure sores too.  The worst one is on her forehead and she has two others on the front of her hips as well.  They have her resting on a special hospital bed that is air-filled to help prevent more pressure sores from developing.


Annie's blood pressure was low all through surgery and continues to remain low (about 57/52).  She's unconscious, and they are keeping her sedated and on the ventilator until tomorrow morning.  They plan to get her off the ventilator tomorrow morning and moved to a regular floor by the end of the day if all goes well. 

She also has a drain tube coming out of the incision in her back to help drain off the oozing blood, which will stay in place for a couple days.  She has a central line in her neck, as well as two other IV sites in her hand and foot.  Her foley is also still in place.

We have yet to see her incision and the condition of her back, but already we can tell that her upper chest is much straighter. 

We're breathing a huge sigh of relief that the surgery is over and she's made it this far.  Now we focus on the long recovery.  Again, thank you so much for all the well wishes and prayers on her behalf!

Out of Surgery

After 9 long hours, Annie is out of surgery and getting settled in the PICU. We haven't seen her yet but hope to soon. The orthopedist said things went well but her blood pressure was low from the very beginning and stayed that way through the whole procedure.  

Usually kids need 1-2 units of blood during this surgery but Annie required 4!! She also received a unit of plasma. She bled a lot more than expected but she remained stable. 

The orthopedist felt like he got a better correction than he anticipated since her spine was fairly stiff, but we won't know an actual measurement of her curve until tomorrow. He wasn't able to correct much of the twisting at all so she still has her rib hump but it is more rounded now rather than coming out to such a point. 

Annie is getting settled in the PICU. She is still on the ventilator. They plan to try to remove it either later tonight or in the morning. 

Thank you so much for all your thoughts and prayers, emails, texts, and Facebook posts!

Our Cozy Corner

This is where we've hung out all day.  It's really not cozy at all, but incredibly cold.  I'm staying wrapped up in Annie's blanket.  We are SO ready to see our little hero!

Mid-Afternoon Surgical Update

We got an update around 1:00pm that they had all the screws in place and were starting to place the first rod.

Just now at 2:30pm we received an update that they are almost done placing the rods.  Then they will do adjustments to finish getting the correction as best as possible.  They suspect to be finished in probably another hour or so!

They are continuing to give her blood, and have given her quite a large volume.  They also have started giving her other blood products as well like plasma.  But they said things are still going as expected.

We were informed that Annie will not be going to recovery because she is going to need to remain intubated (on the ventilator) for longer.  We knew there was a small chance that might happen, but I honestly thought she'd be strong enough to come off the ventilator in recovery before going to the PICU.  But I guess it's best to give her the support she needs now and just give her time to get her strength back without pushing her.

Since she'll still be intubated, she'll go straight from the OR to the PICU, which means we'll get to see her sooner than expected.  They don't know how long she'll require the ventilator, but they will try to extubate her sometime tonight and see how she does.  Apparently it's not uncommon for them to have to re-intubate even 24 hours after surgery, so the next day or two might be touch-and-go.  Again, thank you so much for all your prayers, love, and support.

Late Morning Surgical Update

We've had several updates so far this morning.  Here's how things have progressed:

She went back to the OR at 7:30am and around 9:00am they made the first incision.  Around 10:00am they were still working to get the spine exposed and getting ready to insert the screws.

At 11:30am now, they have 12 screws in her spine, out of about 40 total that she'll receive.  She's being fused from T2 to her pelvis which includes about 16 vertebrae and each vertebrae gets two screws. 

She is currently receiving her first blood transfusion. They expected to give her two units of blood throughout the surgery, and she's already receiving her first.  I was a little surprised to hear that she needed blood this early in the day, but they reassured me that its quite normal around this time.  I guess it's better to stay on top of the blood loss rather than wait until she's more depleted. 

Our medical supplier came to meet us at 9:00am and got Annie's old straight wheelchair seat back installed on her wheelchair frame.  They want to get her sitting up in her chair tomorrow to help prevent pneumonia from setting in.  The medical supplier will come back tomorrow when we get her up to make smaller adjustments to this temporary seat back.

Justin has already had a nap and soon we're going to make a run to the cafeteria for some lunch.  Thank you so much for all the prayers for Annie and her doctors.  Please keep them coming!

Spinal Fusion has Begun

Annie arrived at the hospital today at 5:30am for her spinal fusion.  She was happy and healthy and we breathed a huge sigh of relief just knowing that her level of health was acceptable for surgery today!!  Her white blood cell count this morning was still elevated at 16,000 like it was last week, but since nothing developed this past week, they figure it's safe to proceed.

Annie weighed in at a hefty 66 lbs!  That's 12 lbs more than at the beginning of the year when we first started preparing her for this surgery.  However, her height is down to 49 inches.  Last January she was 56".  All we can think is that with her curve becoming even more bent, her trunk is getting compressed and making her height appear much shorter.  They anticipate her height to increase by 4-6" just from getting her spine a little straighter.

After further studying Annie's x-rays, the orthopedist, Dr. Hasley, has decided it would be best to fuse Annie all the way to her pelvis.  The fusion will begin at T2 (the top of her shoulders) and run all the way to her pelvis.  The incision will run from her neck to her bottom.  Another of Annie's orthopedists, Dr. Jenson, is helping out in the OR today, along with several other people that will be in there monitoring her neurological activity and everything else.  They plan to put in a central line and give her at least one blood transfusion today, possibly more throughout recovery.

Annie headed back to the OR at 7:30am.  It takes a little over an hour to get her prepared since they insert sensors under her skin over her entire body to monitor her neurological activity and there's a lot of other monitoring devices they get her hooked up to.  They anticipate to finish up in the OR between 3:00pm and 5:00pm, and then she'll spend 1-2 hours in recovery, so we hope to see her by 6:00pm or so.  The nurse liaison will be updating us every 1-2 hours as things progress.

I just thought I'd clarify, since some people have asked... The purpose of this surgery is to straighten out her spine as much as possible and fuse the bones of her spine together so that they can no longer move or bend.  They insert cadaver bone segments into the spine and "scratch up" her own spine to stimulate bone growth so that all the bones in her spine will fuse together into one solid mass.  In order to do all of that, they have to insert two screws into each vertebrae and two rods are attached to those screws--one rod down each side of her spine.  They use this hardware to straighten the spine and to brace it, but ultimately, after she is healed, it is not the rods that will continue to hold her straight, but the fact that the bones in her spine itself have fused together to become solid and rigid.

We now are settled in the lobby with computers and books that will hopefully help us stay distracted.  Our medical supplier will be coming to meet with us soon this morning to make adjustments to Annie's chair so it's ready for her newly-shaped back after surgery.

We were reminded again this morning by different people of all the complications and risks that are involved.  It seems like each time the risks are told to us, they add a couple more new ones that we weren't aware of before.  It's incredibly nerve-wracking and this was definitely the hardest parting that we've had as we watch her be wheeled into the OR.  But we have faith in Heavenly Father's plan for her and feel at as much peace as I think can be expected given the situation.  Thank you so much for all your prayers and expressions of love and support.

Spinal Fusion "Before" Pictures

 Here are the "before" pictures of Annie's back and spine.  We're hoping to have some great "after" pictures soon that show some dramatic improvement in her curve as well as her rib hump.  Annie has three curves in her spine, the biggest of which measures at 89 degrees (the smaller ones are about 20 degrees and 40 degrees).  Generally they can correct a curve by around 50%, so if we can get the main curve to 40 degrees, we'll be pretty happy.  Annie's rib hump is caused by the twisting of her spine, which unfortunately, is very difficult to correct.  But we're hoping for at least a slight decrease in the rib hump.

Here are two of Annie's x-rays from the past year--you can see how in just 7 months her curve worsened dramatically.  You can also see the arc of her rib hump (on the left of the pictures) has protruded much more over this time too.

Also, you can see the distance between her left hip and left arm pit (on the right in the pictures) has dramatically decreased as that side of her body has become more squished from her spine.

Even the shape of her heart has changed as it has started getting squished. Her whole chest is compressed from her scoliosis. This spinal fusion surgery to help straighten out her spine will have dramatic health benefits for her heart and lungs.  She is also expected to be 4-6 inches taller after her surgery, and by looking at these x-rays, you can see why!

January 2013 x-ray measuring 68 degrees                                         August 2013 x-ray measuring 89 degrees

Below are some "before" pictures we took this morning.  Since most people only ever see Annie in her wheelchair which holds her up pretty straight and hides her rib hump, I thought I'd share some of these pictures to show what her back actually looks like.

In the top left, and bottom right, you can see how prominent Annie's rib hump has become.  For these pictures, Justin was holding Annie up as straight as possible.  Annie is in the same position in the top left picture as she is in the bottom right, although the top left looks like she's just hunched over, but she really isn't--that's just her rib cage jutting out to the back.

In the bottom right, notice that Justin's hand is just below Annie's right shoulder--the hump below that is her rib cage protruding out because of the curving and twisting of her spine.

In the other two pictures, you can clearly see how her left lung is being squished by her curve.

It's easy to understand the importance of having a custom-made wheelchair seat back for Annie after seeing the actual shape of her back.

In the top left picture below, you can see how the left side of her seat back is molded out towards the back and side to accommodate her large rib hump.

In the picture on the top right, you can see the side support on the right is curved to match the curvature of her spine.  She bears a lot of weight on that side support--the direction that she tips--and often gets pressure sores under that arm pit.

The bottom picture was taken standing behind the wheelchair looking over the headrest and down the seat back toward the bottom cushion.  This is another picture that helps show how important this molded seat back has been for Annie to accommodate her larger rib hump.

These pictures below show what is usually hidden by her backpack on her chair... Again, you can see how the molded seat has been accommodating her severe curve and rip hump.

Following Annie's spinal fusion, we will definitely need a new seat back for her since her back will no longer be the right shape to fit into this molded seat back.  However, since we don't yet know exactly what kind of correction the surgeons will be able to achieve, we don't know exactly what type of seat back Annie will need after surgery.

We'll meet with our medical supplier the day of surgery to put in a temporary seat back, and he'll return to consult with us at the hospital a day or two later when Annie gets up in her chair for the first time.  He'll make adjustments so that she can use the temporary seat back until a new permanent one can be made for her.  We'll meet with our physical therapist and medical supplier to determine exactly what her needs will be after seeing the result of the surgery.

Spinal Fusion Surgical Video

This is a video of an actual spinal fusion surgery using the exact method that Annie will undergo.  I know for some people, like Justin (I love you, sweetheart!) this video is a little too graphic, so consider this your warning.  However, I guess as a doctor's daughter it doesn't bother me--I find it very interesting and I really appreciate being able to visualize exactly what will be happening to Annie in the OR while we wait about 10 hours to see her again.

This video is of a boy (about 13-14 years old, I believe) who has a curve of 60 degrees (Annie's is 90 degrees).  Although spinal fusion surgery is usually 8 hours or longer, this video only captures one hour during the procedure.  The whole video is very informative, but below is a summary if you're only interested in some of the highlights.  (Or, if you want details of the surgery without having to watch the surgical video, you can read about it in a previous post found here.)





At the point when the video starts, nearly all the screws are in place down the length of the spine, but at time mark 5:50, you can see how they go about inserting a screw into the final vertebrae.

The screws go in first and then they begin attaching the first rod to one side at time mark 9:25.

At 22:15 they begin working on the correction with just one rod in place, working to twist and rotate the spine with a wrench and by pushing on the patient's side.

At about 25:45 they show some cross-section pictures to show how the screws fit through each vertebrae.

At about 28:00 they talk a little about complications and risks involved with the surgery, and begin to insert the second rod.

At about 30:00 they talk about the blood loss and the need for blood transfusions.  They talk about "recycling" the patient's own blood that they suction out off of the spine, but I actually don't know if they will be doing that with Annie.  I would suspect and hope that they would. 

At 33:30 they work to further bend the second rod to the needed shape as they continue to work to get it placed.

At 37:10 they talk about how they use donated bone grafts to help the bones of the spine fuse together.

At 41:10 they talk about pain management.

At 42:30 they talk about issues involved with more medically fragile children.

At 46:30 they get both rods in place and basically spend the rest of the video (and beyond the video) working on tweaking and twisting the rods for further correction.

One Week Left...

I took Annie for her last pre-op appointment today.  She's currently healthy and well!  And now that I've given her a haircut, I'd say she's officially ready for surgery next week!

Annie still has a bit of lingering phlegm from her viral infection, but nothing that is requiring suction or that is too out of the ordinary for her.  She also has a canker, but that is inevitable with her biting her lips with her seizures, so I hope that's not a reason to cancel surgery, otherwise we'll never be able to do it!  Her urine analysis came back completely negative which we're thrilled about, but her white blood cell count was 16,000 which is slightly above normal.  But she has no symptoms of illness, so again, we'll keep our fingers crossed that she checks out well enough for the surgeon to give us the green light for next Monday.

Annie currently weighs 64 lbs!  Ever since the orthopedist told us to start preparing her for this surgery last January, we have been trying to pack the pounds on Annie.  We've successfully managed to get 10 extra pounds on her this past year!!  I think my back is actually looking forward to having her lose some of this weight after surgery.

We're now down to the final week.  Each day closer makes us a little more nervous as the reality and magnitude of it all sets in, but at the same time we also have peace that this is the best thing for Annie.  She has been home from school and in isolation since October 25th, so we are ready to move forward and get this all behind us.  We are so grateful for the power of prayer and priesthood blessings and the comfort that they have brought us.

Molly and Lexie seem to be doing well.  We've had a lot of discussions about what is going to be happening and exactly what Annie's surgery entails.  We've also spent a lot of time in Family Home Evenings talking about eternal families and the plan of salvation.  On Thanksgiving as the girls were asked what they are thankful for, Justin and I were so touched to hear both Lexie and Molly tell us how grateful they are for Annie in our family.  They are sweet girls and they truly love their sister.

I've felt bad that Lexie will be celebrating her birthday while we are with Annie in the hospital.  And ironically, I realized that earlier this year we celebrated Molly's birthday while Annie was in the hospital also.  Poor girls!  But they have really positive attitudes and are very understanding.  I often worry about how they handle situations like this, but I realize too that this type of life is all they've ever known and is normal for them.  I am so grateful for sweet daughters who even pray not just for Annie, but also for Justin and me when they sense that we are overwhelmed and stressed.  I'm grateful we could have a quiet and calm Thanksgiving at home.  We truly do have so much to be grateful for!

The Tolmanator's New Textbook

After a year and a half of long, hard work, Justin's Pharmaceutics textbook has now been published and is for sale!  Here's a link to the Amazon listing for it.  On that page you can click "Look Inside" to see several pages.  Feel free to purchase it, read it, and write a wonderful review! ;)

This textbook (written with two other co-workers of his) was the highest selling textbook from this publisher at the last American Association of Pharmaceutical Sciences (AAPS) conference.  Way to go, Justin!!

Annie Update

Annie is still sick.  Today is day 9 of this nasty illness.  She hasn't been this sick in a really long time.  She has been coughing nearly non-stop all day and night for the last several days and has been having a really hard time with thick congestion in her throat.  She's been requiring suctioning regularly around the clock, but today was the first day that we went more than an hour without suctioning!  VERY small progress, but I'll take it and am happy to see it.  I think this illness would have slammed even a typically healthy child, but for Annie it's always much worse.

Annie has been continuing to have a persistent rattle in her breathing and after we listened to her lungs and heard the rattling there too, we became a little nervous, especially since her fevers are still hanging out around 101-102 degrees.  Fortunately her seizures have remained fairly well controlled since her scary episodes 9 days ago--they are not completely gone, but back to their usual frequency.

It's hard to tell if the rattling in her lungs is from pneumonia or is just being reflected from her upper airway.  So I took Annie back to the pediatrician again today to have her checked out for pneumonia.  She's never had pneumonia before since she's always maintained a good, strong cough, but her cough hasn't always been productive this week as she's grown so weak from coughing so much.  And with pneumonia being the most common cause of death with Aicardi Syndrome, we don't treat it lightly.

The pediatrician thought Annie's lungs sounded fairly clear, and her O2 sats were around 95-97.  Not bad, but she's usually always at 100.  If her O2 sats had been in the 80s he would have hospitalized her immediately.  We've always thought it would be convenient to have our own pulse ox machine at home, and our doctor today agreed, so he ordered us one and we'll get it soon, which will bring some peace of mind.  So then we went to the hospital for a chest x-ray.  It was torture for Annie getting the x-ray, but fortunately it was completely clear!  Whew!

Annie also had a Respiratory Viral Panel done at the hospital--just a nasal swab to check for about two dozen different viral infections.  And surprisingly, that came back negative as well.  We suspect that she had some kind of terrible viral infection last week, but all the phelgm and congestion she's struggled to clear has turned into bronchitis or a sinus infection.  So we'll start her on yet another round of antibiotics, hoping and praying that this girl can finally catch a break, get healthy and strong in plenty of time for her spinal surgery in 3 1/2 weeks, and sail through without any problems.  Once she has her spinal fusion, her lungs should be healthier and stronger at times like this since her left lung is currently being crushed by her scoliosis.  We've just got to get her healthy for surgery!

For now, I'm most grateful for a husband who could work from home yesterday so I could take a 4 hour nap.  We're still exhausted but I think Annie will turn the corner really soon with the antibiotic, and hopefully we can all start getting some sleep again.  We really appreciate thoughts and prayers on her behalf.

Postponing Surgery

Annie is keeping us on our toes this week. She was scheduled for her spinal fusion surgery on Monday, but on Wednesday this week she had terrible seizures for 3 hours requiring two rescue meds, developed a temperature of 104.4, and was in the ER last night. We've kept her in isolation the last 2 weeks to prepare for this surgery, yet she still managed to develop a viral infection. With this surgery being so risky anyway and requiring 8-9 hours under anesthesia, the risks are way too high to proceed on Monday with her in this condition. The surgeon has rescheduled her spinal fusion for December 9th. I'm hoping we can survive 4 more weeks of high anxiety and stress leading up to this and that Annie can get (and stay) healthy and strong this time!

Final Spinal Surgery Testing and Info

Today I took Annie to the hospital for a series of tests and consultations in preparation for her spinal fusion on November 11th.  First we had a series of x-rays taken of her back, and met with the orthopedic surgeon for more than 30 minutes.

The good news is that her curve hasn't worsened since August--the largest curve (of her 3 curves) is still around 85-90 degrees.  But her spine isn't quite as flexible as he had once thought in the past.  The flexibility x-ray where they bend her against her biggest curve showed that they were able to bend her to 50 degrees.  Generally a 50% improvement is expected after surgery, so the surgeon does think he can get her down to about a 40 degree curve with the fusion.

However, since her spine is not only curved, but also twisted, she has developed a very large rib hump on her right side, and since it is so difficult to un-twist her spine with this surgery, he anticipates that she will still have a rib hump, but hopefully it will not be quite as prominent.

The orthopedist will need to study her x-rays more thoroughly to decide exactly which vertebrae will be fused together, but her fusion will definitely start at T2 (just below the neck) and go to L3 or L4 (below the waist) or maybe down to her pelvis.  Her worst curves are fairly high on her back, so he might be able to avoid fusing her pelvis.

The doctor went into great detail of how the surgery is performed which was helpful.  After making the incision from her next to hips, he first inserts the screws into the vertebrae down the length of her spine.  They have screw knobs on the end of them that they then begin attaching one metal rod to, working down the length of her spine, on the concave side of her curve.

As they attach the rod to the implanted screws, they tighten them so as to pull her curved spine towards the straight rod.  The surgeon watches to see how far he can pull the spine before the screws in her vertebrae start to slip, and then he knows that that is only as far as he is able to correct her curve.  At that point, they will shape the rod to fit the remaining curve of her spine.

After the first rod is placed securing her spine, they place the second rod on the opposite side of her spine to further secure it.  As they attach the rods to the spine, they will also try to un-twist her spine and rotate it back to a normal position as much as possible, but that part of it is very difficult to correct.

They expect the surgery to last 8-9 hours, which I know will be the longest and scariest 8-9 hours of my life.  We have been told of all the serious risks involved with this procedure, but today we were told of even more risks.  The biggest risk during the surgery is a fatal loss of blood.  They plan to have two units of blood available in the OR for her, but sometimes if there is an accidental nick of an artery or they can't find a source of blood loss, it can be life-threatening.

Also, since Annie will be laying prone for 8-9 hours, there is also a risk of blindness.  It is rare, but it occurred at our children's hospital a few years ago during this same surgery.  There is a risk of cardiac arrest during surgery, as well as risks of paralysis when working with the spine.  Yes, Annie doesn't walk, but paralysis would still affect her rather dramatically in other ways.  They will be inserting needles under her skin all over her body and have leads on her head and one person will constantly be monitoring her neurological activity during the surgery.

After surgery she will be in the ICU for a day or two.  She might remain intubated and on the ventilator in the ICU also. The biggest risk after surgery is pneumonia, so they will work extra hard with us to get Annie sitting and up-right as soon as possible after surgery to help avoid a potentially fatal case of pneumonia.  There is also a risk of infection, which is often very difficult to treat in spinal fusion patients and can be fatal.  Annie will be having cadaver bone grafts placed in her spine as part of the procedure, and the doctor will be inserting antibiotics in with each bone graft, and she will also be receiving IV antibiotics as well.

After surgery she'll have a drain coming out of her back for a couple days, and will probably receive at least one more blood transfusion.  She is expected to be in the hospital for a week if all goes according as planned.  Once she's home, she will be recovering and out of school for about 4-6 weeks.

After x-rays and meeting with the orthopedist, we went down to the pre-op unit and Annie had blood drawn for lab work and to type her blood in prep for her blood transfusions.  They also took a urine sample, making sure to check for any sign of UTI.

Then I met at length with the anesthesiologist.  She again stressed all the major risks that the orthopedist talked to us about, stressing the risk of fatal blood loss during surgery and cardiac arrest.  She also talked about the added risks of being under anesthesia for such a long time.

We often feel overwhelmed and incredibly nervous and scared about this procedure.  It's such a major surgery, but when we expressed our anxiety to the orthopedist, he reminded us that he does one of these spinal fusions every single week, and that it really is a rather safe procedure!  I know they have to legally tell us all the risks up front, but it sure does scare us.  The orthopedist reminded us that they know exactly what all the risks are and what complications can arise, so they are always prepared for those.  He gave us a little more sense of peace, and we find a lot of peace knowing that so many of our friends have gone through this successfully.  We are trying to keep a lot of faith in Heavenly Father knowing that Annie will truly be in His hands, and have complete trust that He will watch over her.

So for now, with surgery about 2 weeks away, we are working diligently to keep Annie healthy.  As the doctor said, all the stars must be aligned before going into this surgery.  It is a huge procedure and can be life-threatening, so if even one little thing isn't quite right, they will cancel surgery.  She can't have any kind of cold or illness, infection (UTI), or not even diaper rash or an ingrown toenail!  
Needless to say, this is a major surgery--definitely the biggest surgery of her entire life.  We really appreciate prayers and fasting on Annie's behalf, and also in behalf of the surgeons and surgical team that will be working on her.  And prayers for our own peace during such a scary time are greatly appreciated as well!

Make-a-Wish Trip Day 7: More GKTW, Universal Studios, and Heading Home

I can’t believe this is our last day here. We’ve looked forward to this amazing trip for so long and it’s hard to believe it’s nearly over. We took this morning a bit more slowly and finished packing up all our things. We got breakfast at the Gingerbread House and then went to the Candy Land playground again for Justin to see it this time and to be able to take some pictures in the daylight.

I still can't believe we packed so lightly and got all our stuff in just these few bags with NO checked luggage! The red and orange suitcases, as well as the pink backpack are all full of just the gifts we received!

Molly checking to see if she'll be able to carry this backpack through the airports for us.  It's HUGE, but it's really just filled with the 3 Magic Pillows the girls got at the beginning of the trip, and Annie's extra pillow for positioning her on the plane.

It's been wonderful spending so much time together as a family!

Enjoying our villa porch one last time before leaving.

The Candy Land Playground at GKTW

This playground is really awesome!  It's all wheelchair accesible, and it's a huge Candy Land game board.

On Sunday nights at GKTW they do an actual live Candy Land game here where the guests themselves are their own pawns as they move around the game board.

Here are some of the other villas in the village.  There are about 150 villas and each of them is uniquely designed on the outside.  The whole village feels so magical.

 After letting the girls play for a while we headed to the House of Hearts to check out. Again, it was humbling to be presented with more wonderful things at check out. We got a CD of all the photos that were taken of us around GKTW by their photographers. We also got a certificate that, as a wish family, will get us into most amusement parks and attractions around the country for free over the next year! We got a nice printed picture of us with Mickey Mouse when he was in the village earlier this week.

House of Hearts at GKTW

We also got a certificate for Crops of Love—an organization that will put together a complete scrapbook for us of all our pictures from our trip, for free. Our MAW wish granters are also putting together a scrap book for us, so we will be blessed with lots of ways to remember this wonderful trip!

We also got another golden star like the one with Annie’s name on it in the Castle of Miracles to remember exactly what her star looks like there. We have definitely received an amazing outpouring of love here at GKTW. It has been by far more magical than any Disney park could ever be. There is such a wonderful spirit about the people here—the volunteers as well as the wish families. I wish we had more time to stay!

After we checked out from GKTW, we drove to Universal Studios to go to the other half of the park we didn’t see yesterday. We headed to first aid to change Annie, got our free stroller rental as usual, then went to the Despicable Me ride. It was basically a 3D movie with moving seats which was fun, but that also made it so Annie could sit and watch the movie part without being jolted around in the ride. Then we went on Shrek 4D which was nearly the same way.

After that we went to an Animal Actors show since we loved the Pets Ahoy show so much in Sea World, but this one wasn’t nearly as exciting. However, the worker grabbed us before the show and told us to stick around afterwards, after everyone else has left the auditorium, and they’d bring out the animals and let us pet them and take pictures. So that was kind of special and the girls liked it.

Being silly waiting for the show to start

Annie's private time with the animals after the show.

Next we headed to the E.T. ride, which again, was accessible for wheelchairs, but they wouldn’t let Annie ride because her wheelchair supported her trunk and she couldn’t support her trunk herself. She could have totally gone on it. It’s been frustrating that there hasn’t been much in Universal Studios for Annie to participate in like she did in the Disney parks.

Then we headed to the kids play area and the girls (and Justin) LOVED the ball machines where they could vacuum up balls and make them travel through tubes and collect them to shoot out of air guns. We finally pulled them out of there when the noise was becoming way too much for us. Universal is definitely the loudest theme park I’ve ever been to in my life—every ride is super loud and even all the music playing through the walkways is way too much.

The girls could have played in here all day!

I think Justin had just as much fun as the girls did!

This was the huge water area, but we didn't get very wet since we were headed to the airport soon.

 Justin and I took turns going on a kids’ roller coaster with Molly and Lexie, and Molly even went on a water slide in an inner tube, but didn’t even get wet. It probably would have felt good with the hot temperatures. (I think each day got just a little warmer. Highs were around 85-90 degrees with heat indexes in the mid to upper 90s. The lows only got into the low 70s, so the evenings were really comfortable and nice.)

Justin, Molly, and Lexie are in the front two cars.

 

Molly on the waterslide

On our way out of the park, we stopped to have pictures with Curious George and Woody Woodpecker since they were just right there.  We were ushered to the front of the line of people waiting, and when we were done, the worker asked who else we wanted pictures with and she would just call them and have them come to us—anyone we wanted. We stood there stunned, but we weren’t sure who all the Universal characters were, and we were on our way to the airport anyway, so we had to turn down the opportunity. Too bad we couldn’t have taken advantage of that sooner in the day had we known!

With Curious George

Woody and Winnie Woodpecker

 

Winnie Woodpecker was super nice to Annie

We picked up our free 8x10 picture from the photo shop. Again, I’d never consider buying pictures like this, but when they are free as a wish family, why not?

The free picture we received as one of our MAW perks in Universal.

We enjoyed Subway so much for lunch yesterday that we hit it again today. But this time, the kind young man behind the counter gave us free cookies after seeing us in our MAW shirts. People everywhere are all so kind!

Then we headed to the airport and met the van rental lady right at the curb for departures to retrieve her van. The whole van rental process worked so smoothly and flawlessly without us really having to lift a finger. And it was a really nice car!

We got to the airport around 3pm which several people had recommended to us, even though our flight didn’t leave until 5:30pm, but Orlando’s security lines were much longer than Omaha’s and we needed that extra time to get through.

As we boarded our first flight of the night, the pilot came back to us in the cabin as we were getting Annie situated before anyone else was on the plane, and was so kind talking to us and telling us he’d get us whatever we need. Lexie slept through most of the first flight but woke up long enough to eat the hot fresh cookies our stewardess brought us after she served them to first class!

Those Magic Pillows from GKTW sure were great to have!

Lexie was a sound sleeper on the flights home!

Molly enjoyed browsing the airline catalog and got a kick out of some of the stuff in there.

Annie did great on the flights home.  Her chest strap and extra pillows worked great to keep her sitting up in the airplane seat.

 Justin was trying to figure out a way to hang up her beads for her when a total stranger stood up and came over to show Justin a way he could get them to hang! 

 
We landed in DFW for our layover and had about 2 hours, so we grabbed some dinner and let the girls watch a movie.

Before leaving DFW a family that had just come from Orlando had a daughter who wanted to give Annie her huge Mickey Mouse balloon. We were so touched by her thoughtfulness and generosity, but with one more leg of our flight ahead of us, we just couldn’t manage to take it with us. But even still, I continue to be amazed by all the kindness that has been shown to our family on this trip. Often Annie is overlooked or not considered in so many ways, and to see her be the center of attention on this trip, even from total strangers, has been so touching and continues to bring tears to my eyes as I consider all the genuine kindness she has received on this trip. She has truly been treated like a princess and she SO deserves it!!

Our flight to Omaha left around 10pm and all 5 of us quickly fell asleep and remained asleep for the entire flight. We landed at 11:30, and by the time we got our van from long-term parking, and got home, we all quickly fell into bed around 12:30. And fall definitely arrived while we were gone!! It’s SO cold! It’s going to be hard to be home and get back into our routines! But I am so grateful for this amazing week. It was truly a once-in-a-lifetime trip.

Sure, we can always go back to Disney World, and we are also even welcome back to GKTW for a day visit whenever we like, but never again will we experience these places in the magical way we were able to on this trip. I am so grateful for the kindness and generosity of so many people—the volunteers at GKTW and MAW, as well as all the donors that contributed to make not only our trip possible, but the trips for over 120,000 other kids who have been able to experience what we have. It is absolutely amazing! The love and kindness we have received has been overwhelming and we are so grateful for the memories that we’ll always have of this trip.