Christmas 2012

Another fabulous Christmas at the Ashby house.

Lights at Temple Square

It has been years since we have made it to Temple Square during Christmas time.  I don't know if it was because we were there on the Saturday before Christmas or if it is always like this.  SO MANY PEOPLE!  It makes it hard to enjoy anything when you are walled in with thousands of other people.  

It was fun to go with the Sabey's and Grandma Roberts though.  We were all crazy together. :)

Recital Mania

It wouldn't be Christmas time without a whole lot of recitals. 

Whitney at her piano recital.  She did amazing as usual.

Lindsey at her tumbling recital.  She has mastered her back walk overs.  You go girl!  She wasn't feeling well and ended up with a fever later that day, but she still did a great job.

The Sabey girls take dance at the same place so we go to see them perform as well.

Cassidy at her Voice Recital.  She did a great job, even though she was sick.  

Jazz Game

We took the kids to their first Jazz game.  The kids has a blast.  Our only downfall was when Cassidy, Lindsey, Grant and I went out to get a drink, a guy started throwing up all over the floor, right behind us.  It splashed all over the back of Cassidy.  Poor Girl!  YUCK!

Ice Breakers

Aaron coached Whitney's volleyball team again this fall.  They are both having a lot of fun.  It has sparked an interest in the other kids as well.  Dad may just have his hands full coaching lots of teams soon.  Luckily they can't start until the third grade.

Happy Birthday Cassidy

If you know Cassidy at all, it won't come as a surprise that she chose to have a "Rock Star" party this year.  

 They all decorated star shaped brownies.

They decorated their own guitar and I made them their own microphone. (Glittered foam ball stuck on a dowel stick)

Karaoke and dancing.  They also watched "Barbie: Princess & the Pop Star"

Of course, flowers from Dad!

Our dear friend, Lori Richards, asked me if she could make Cassidy a birthday cake this year.  Since her party was right after we brought Grant home from the hospital, this was a huge blessing.  I am so awed by her.  This is a lot of work to decorate a cake.  What a wonderful woman.  I hope I can be more thoughtful of others and think of things that really would be helpful when they are in times of need.

Casssidy's actual birthday was while we were at the hospital.  We recruited Aunt Katie to make sure that Cassidy had a great day, even if Mom and Dad were not around.  Katie picked the girls up from school and took them back to her house for a makeover and a movie.  (Tinker Bell, Secret of the Wings)  Then I was able to meet up with Katie's family, Grandma & Grandpa Ashby and the girls at Golden Corral for a birthday dinner.  (We won't mention that I accidentally went to Chuck a Rama, so I was a little late....I had been at the hospital for three days, I was tired! :)

Thanks everyone for helping make Cassidy's birthday special!

One week later

All of the many prayers said for Grant have definitely been answered. He is doing amazingly well. If not for the visible scars, you would never know he just had surgery a week ago.

I'm still trying to keep him doing quiet things. We are coloring lots of pictures, painting, Legos, target practice, video games, movies etc. He has way more energy than I do.

For Halloween we set him up on a bench on the porch. He handed out the Halloween candy to all the kids. His sisters took a bucket around for him. This is the way to do it. :-) All the candy, no work.

I am getting more hugs from him than I used to. I was worried this would alter his personality, if anything, it has made him even sweeter and more funny. We just love this guy. We are so grateful that he is doing so well. We are also grateful for all the cards, gifts, meals and help that has been given to us. Thank You!

We are home!

Grant was released today. Now the challenge is going to be keeping an active 5 year old down. He doesn't have a lot of restrictions, just keeping his feet on the ground for the next three months. So no bike, tramp, slides, climbing on furniture etc. Wish us luck!

We brought his mattress into our room for a few nights. I'm a little paranoid still. I'm following him around ready to catch him if he falls.

The girls were really happy to see him when they got home from school. It's nice to have our whole family together again.

Thank you everyone. We couldn't have survived this without all the prayers and encouraging comments. They strengthened us when we needed it most.

BTW, This is posted by Heather, the pictures were on Aaron's phone. You can probably tell since I don't write as well as he does. :-)

A great afternoon for Grant

We have heard from many people who have said they are reading this blog. We are overwhelmed by the love and support of our friends. For those who don't know much of the story of why we are in the hospital, Grant had a series of cysts that the plastic surgeon says was the largest he has ever encountered. They spread from inside the skull near the brain up to the tip of his nose. These were benign dermoid cysts that were essentially skin cells that never quite developed right during fetal growth. They would have continued to slowly grow if not removed, which would have caused many problems. We were very blessed that one presented itself on the tip of his nose where we could detect the problem. By removing all of them, there is really no chance for any recurrence.

Well from there you know the story on this blog of the pretty extensive surgery to fix the problem and of the rough few days of recovery. As Heather mentioned In her last post, about mid day today Grant turned the corner. He is now fine managing pain with just Tylenol and Ibuprofen. His eyes, though still a bit swollen, are open and he is making up for lost time and fun.

Today we played video games, went for a wagon ride around the hospital, painted pictures, did playdough, played the piano, talked to people on the phone, shot styrofoam cups with nerf darts, and watched a movie while eating popcorn. It has been an amazing and very happy turnaround. We thank all of you for your prayers and acts of kindness. One of the many touching things we received today was a package of roughly 100 hand made cards drawn by the children in primary in our ward. Grant had a great time going through them and he felt so special that so many people are praying for him and writing emails, notes and cards.

One final thing we did at Grant's request was to draw a map of the United States, including a compass which is very important to him :), and show where the big storm is coming and talk about any of our friends who might be in the path of the storm. We remembered to pray for all of you tonight too. Please be safe.

What a difference 15 minutes can make

Grant woke up similar to yesterday. Eyes wouldn't open, he just grunted and moaned, not happy.

They took out his drain this morning. They had given him some Versed to help him get through it. He fell asleep after. I left and grabbed some lunch and brought it back to the room to eat. When I got back, his eyes were open, he was laughing, talking, joking and shooting darts with dad. Our friend Tiffany gave him a new dart gun. Dad was setting up cups and targets and he was having a blast. He is a completely different kid from the past few days. I've missed my Granty. It is such a relief to have him back.

Hoping to go home tomorrow.

Sunday

As we had been told, the swelling has been gradually increasing since the surgery and today Grant's eyes have been swollen shut most of the day. He has been very brave as we help him eat and feel the things he needs like tissues. Heather was gone to the primary program for much of the day so it was just Grant and Dad. He has been able to sleep much of the day and doesn't talk much. We tried reading stories, feeling playdough and listening to music or DVDs. For the most part he has been quiet and stoic. Although it was sad to hear him say, in a small tearful voice, "I want to have littler eyes." Because of the swelling the drain in his head won't be coming out today. But he is improving.

Heather says the primary program went well and the girls, and all the primary kids, did well.

NTU

Grant is now in a room in the Neuroscience Trauma Unit. It is much better out of the PICU and in a room.

Grant is swelling like they told us he would. He can't open his left eye. He tends to sleep on his left side so the swelling is more on that side. Even though I knew it was coming, it is very difficult to see. Luckily he is sleeping still. Today will be the worst day for swelling and it should start going down tomorrow.

We learned yesterday how important it is to stay on top of the pain medication. He does well when he is drugged, but when it wears off, he gets really upset. They don't want him crying too much because that puts a lot of pressure on his head.

They are hoping to remove the drain in his head today. There isn't much that comes out of it anymore, so that is good.

Aaron will be here with Grant today so that I can run home for our Primary Program. It is going to be very hard to leave Grant, but I have to be there for my girls too. We will switch places and Aaron will go back tonight so that he can be there in the morning for Cassidy's birthday. The girls were pretty emotional last night. They all want to come see Grant, but I don't think seeing him will be good. Hopefully he is alert enough to talk to them on the phone today.

Moving out of ICU soon

Grant is getting progressively better. He is still drowsy, and would prefer to go home. But, he was finally able to eat and drink. Initially they were going to make him wait to have an MRI with sedation before they would let him eat or drink anything. And they were not going to be able to do the MRI until 2pm. For a boy who often wakes us up in the morning by coming to our bedside before dawn saying "I want some bweskfast" waiting all day to eat or drink was going to be a very hard thing. Mercifully, the neurosurgeon came by to check on him and said we could just do a simple CT scan today and follow up with an MRI in a couple of months. That meant no sedation which meant he could eat. Happiest news of the day! So he started out with some apple juice and crackers and after the CT he ordered oatmeal, toast and milk. At Primary Children's one of the fantastic ways that they make this place as great as can be for the children is by letting them order whatever food they want from "room service" 24/7. This is one positive thing Grant has been looking forward to about coming to the hospital. Now that his belly is full he is sleeping soundly. In a few minutes they will pull out some of the wires and tubes and transfer us out of the ICU to the main floor of the hospital.

Also the swelling is less than anticipated and by all accounts Dr Siddiqi, the plastic surgeon that worked on his nose and closing the visible scars, is a perfectionist who has done the best possible job on him. We were blessed to have both the chief of plastic surgery and the chief of neurosurgery work on him.

Actually we have had many blessings throughout this process and have felt the sustaining prayers of many friends and family on our behalf. We truly appreciate them. We haven't officially counted but we have heard from many friends in at least UT, CO, CA, AZ, MO, OH, FL, NJ, AL, NC, SC, TX, TN, and Canada who have told us they are praying for Grant and our family. What a remarkable outpouring of faith and love. We are humbled and grateful for our wonderful friends and family.

Friday Night

Grant started slowly getting more alert at intervals through the night He slept most of the time but he could also wake up and talk a little. His throat is pretty irritated from being intubated for several hours during surgery and he is doing a fair amount of coughing. We have moved from ice chips to little sips of water. Grant would like us to skip ahead to solid foods right away, but he will have to wait a little while longer. His head is starting to swell so we are putting ice packs on there. We have found that the one that works the best is a glove filled with ice.

In the PICU

If you have been in the Pediatric Intensive Care Unit or PICU at Primary Children's Hospital you probably know that they kick parents out between 7:00-8:00 PM and AM for shift changes. Grant was transferred from the OR to the PICU right before 7 so normally we would not have been allowed in. But a nice nurse let us come back. He is still asleep and doesn't look too bad.

Done with surgery

The surgeons just came and updated us. They are done with surgery but the anesthesiologist and others still have to finish things up before we can see Grant. So about 45 minutes. They said it went well. The cysts in the brain cavity came out easily and did not appear to impact the brain itself. If there was any hole in the dura, which was our big concern, it was very small and there may not have been a hole at all. They put a stitch in just to be sure though. The largest of the cysts was right at the top of the nose on the skull. The bone had eroded around it so there was a void there which they filled with a bone graft that they said went very well. The cyst on the tip of his nose, the only visible one which tipped us off to this whole thing, had collapsed the cartilage down so he will have a bit of a flat nose for a while. They will do a follow-up surgery in a few years to fix that. It sounds like he will look pretty scary at first. No bandages so the scars will be visible. He will have a drain on his head for a few days and he will swell up a lot this weekend, but that was all expected. Now we are just waiting outside the ICU to see Grant when they bring him back.

Surgery update 2

Just after 5pm now and they called with the third update from the OR. The plastic surgeon has successfully removed the cyst from Grant's nose and, as suspected, it connected to the other cysts and created a void in the skull. So they are working on closing that void now. He will probably be in surgery another hour or so.

Surgery Update

We just got our second update from the operating room. They are about 3 hours into surgery and they have removed the cysts in his head and are working on closing things back up there as well as getting the cysts out of the nose. All is apparently going well.

Off to surgery

So it is just after noon and Grant is finally off to surgery. The two surgeons, the nurse and the anesthesiologist each consulted with us before they took him back. Here is what we talked about with them:

As we had heard, It will be a pretty major incision - ear to ear. They will then peel the skin back and cut through the skull. They will remove quite a bit of the bone in the front of the skull over his eyes. From the way the surgeon talked, it may be close to the size of an iPhone turned horizontally. He described the bone like an Oreo, having two layers. They will use one layer of bone to help fill the gap where the cyst currently sits and has blocked the bone from developing. They will return the other layer to its original position and hold it in place with screws and plates that will dissolve slowly over several months. When they get into the skull they suspect they may find that the cysts have created a hole in the dura mater - the thin leather-like lining around the brain. If so, they will try to seal that off, but there is a chance that spinal fluid may leak through and out his nose. If that occurred they would have to do a second surgery to repair it. Hopefully that is unlikely. However, if there is some drainage due to surgery, they may put a drain on his back at the base of his spine for a few days to allow that to heal. They will also have him on anti-seizure medication for probably a week. He will spend tonight in the ICU but then should be able to move to a regular room for the next several nights. It is likely that swelling from the surgery will cause his eyes to swell shut for some of the weekend. But he will be on morphine and other things to manage the pain and will probably spend a lot of time sleeping over the next few days.

Because of the delay in getting back to surgery, Grant was starting to get pretty hungry and thirsty. He is really looking forward to getting something to eat and drink after surgery. But that concern went away when they gave him Versed about 30 minutes before they took him back. The Versed calms him down and he got really mellow and relaxed. Pretty smiley too.

The surgery is expected to last about 5 hours, but they will give us some updates throughout.