Lizzy update - great news!

On Wednesday we went back to Iowa City for a follow-up visit with Lizzy's surgeon. This is the first time since her surgery that she had an MRI. Until now, we didn't know for sure that the surgery did what it was intended to do, but now there is no question.

While we were hopeful that we would see some improvement, we really didn't expect that she would be so far improved! Nearly all of the fluid that had filled her spinal cord has drained and fluid is flowing very normally.

This is a picture from her first MRI in April. You can see how her brain had grown down into the spinal canal. As a result, the fluid that would normally flow down the outside of her spinal cord was filling the inside of the spinal cord causing it to be much larger than normal. You can see the fluid extending down the length of her spinal cord.

Here's a picture from Wednesday. You can see how the surgery created space for fluid to flow normally outside of the spinal cord. The fluid is white and flowing down the outside of the spinal cord like it's supposed to. The spinal cord is looking much more normal. You can see a little fluid still inside the spinal cord, but soooo much better than before!

We are very, very happy with how things are going. We think her scoliosis is starting to straighten too. She's one and a half inches taller than she was just three months ago and she is looking straighter to us. She'll follow-up with the orthopedic doctor in a couple of months to get official update on that. Her reflexes are still mostly unresponsive, but the one reflex that was overactive is more normal now. She's also starting to be a little more ticklish.

We are so thankful for the miracle of modern medicine. In this case, it has saved our daughter's life. We're thankful too for the many many people who showed so much care and concern for our family this summer and offered prayers on our behalf. Lizzy kept all of the cards she received - it was so kind of everyone that sent them. Below are some pictures of Lizzy with her cards.

A summer to remember!

Well, the summer is over and school has been in session a few weeks. I think this is one summer I will be happy to leave behind. A week of it was spent in the hospital in Iowa City. Then we had two and half weeks at home where Lizzy wasn't allowed to go out at all (except to the doctor). Thank goodness we had family helping us for a few weeks. It wasn't just this that made things crazy though. It seemed like our normally very healthy, only go to the doctor for well checks family had an explosion of problems. It felt as though we were always at the dentist or doctor this summer. Between all of us, Greg and I included, this is what we have done since April 25th (only about 3 or 4 things happened until end of May and then....):

6 trips to the pediatrician

3 shots

1 draining of an infected toe

2 trips to the ER

3 x-rays

1 cat scan

4 MRIs

1 set of crutches

4 trips to our Family Practice Doc

1 neurologist visit

1 EMG

1 nerve conduction study

8 blood draws

2 hospital stays (yes they did overlap)

4 visits to the orthopedic

2 visits to the prosthetic place (for Lizzy's brace)

1 specialized EEG

1 trip to the anesthesiologist

4 trips to the neurosurgeon

1 posterior fossa decompression

1 frenulectomy

2 cavities filled

10 trips to the orthodontist (most in the last few weeks)

5 trips to the dentist

2 trips to the chiropractor

1 ultrasound (no, I am not pregnant; people have ultrasounds for other reasons)

8 trips to the pharmacy

Maybe I should have titled it a summer to forget! I hope our next summer is better than this one has been. But, we have made it through, and we are ever so grateful for the medical technology that has blessed us this summer, especially Lizzy.

We didn't get to go on any vacations this summer, so instead of vacation pictures you get these:

Anna shows off the handiwork of the orthodontist. She received an expander this summer to correct her bite.

The expander has caused her two front teeth to open up and cause a huge gap. She is still beautiful though, and the orthodontist assures us her teeth with drift back together.

Adam has an appliance called a distal jet in his mouth, along with the braces.

Adam's new metal smile. He was bummed they didn't have blue and white, the BYU colors, so instead he chose green and black.

Guess who is allergic to penicillin?!!

The kids (and I) played a lot of games this summer. This is a not so traditional playing of Blockus. Ben and Jake made up their own rules.

We had to find a lot of things to do at home. This was a day the kids all played with Playdoh.

Greg found the time this summer to install an in ground basketball hoop. It took several days of digging to finish the 4 ft. deep hole.

Adam spent a lot of his summer powerwashing our playset and then covering it with primer. He still has to do the paint coat. This is what we had him do to earn money for scout camp. When he wasn't working on this he could be found working on his magic tricks.

Although it has been a hard and unusual summer, we are grateful we have had each other to spend it with. Traveling even the rough roads of life is a little bit easier with family.

Lizzy update--end of summer

Hello everyone. I am finally feeling up to a blog post after months of quiet. It has been an exhausting summer. I know the thing that people are most interested in is how Lizzy is doing. The answer is: GREAT!! She really is doing great. Two weeks before school started we went back again to Iowa City. The neurosurgeon said she is looking good. He gave her the OK to swim and to run. He said she could go to school full day, but she can't carry a backpack:) (Her wonderful brother and sister share the task of that one). She still has to avoid too strenuous activities, lifting anything over five pounds, and playing on any playground equipment (swings, monkey bars, etc.), but the fact that she could run made her day. The difficult things are: no gymnastics (for how long we don't know), no trampoline (maybe never again), and no roller coasters (our family loves amusement parks).

This is Lizzy the day she got her stitches out---the last day to wear her bandages.

Here is Lizzy right after the bandages had been removed, before the stitches are out. Pretty impressive, eh? I forgot to count until they were out and I think there was about 28 stitches (I could still see the holes even after the stitches were out).

Here is Lizzy's scar today. Quite an improvement, yeah? No more Frankenstein. Here hair is growing in nicely, but I am not sure if there is always going to be a little bald spot right around the scar. Time will tell. The nice thing is her hair is long enough to hide it when she wants to, though she is more prone to be proud and show it off.

The real challenge of the day came as she got her brace for her scoliosis. Both she and I cried as the orthotist was trying to get it to fit just right. That thing is not the most comfortable thing and the initial thought of trying to wear it 14 hours a day, including sleeping, seemed all but impossible. It has been three weeks since then and Lizzy's dealing with it like a champ. We still have tears sometimes, but she is doing it! I feel like her attitude has changed so much through all of this. I have even wondered if it could be because of the physical changes fixing things inside her. Obviously it could just be she is totally awesome and has learned a lot from this trial, thanks to the Lord. We may never know. Either way it has been a great blessing to her and to us.

This is how Lizzy says she feels about her brace.

And the back. You will notice there are stickers on it. After the brutal morning of the brace fitting and then an incredibly long wait to see the orthopedic doc the receptionist took the time to talk to Lizzy and told her that next time she got a brace she might be able to get it in a different color and said that we could decorate with stickers. She gave Lizzy two to start her collection. Her kindness really made a difference for Lizzy that day.

See, she's still the same old Lizzy. It's not so bad.

Lizzy - A week later

It's been a week now. Lizzy is doing phenomenally well - far better than we had anticipated. We feel very blessed and happy with how things are going. A week or so before surgery, Lizzy handed me a copy the The Friend magazine (a children's magazine published by our church) that she had been reading earlier that day and said, "Here, read this." I thought she had wanted me to read something to her so I started to sit down to read to her. She said, "No, I don't want you to read it to me, just read it to yourself!". It was the story about a young man who had surgery. His family and friends prayed for him and many participated in a special fast for him. In the end, he was blessed with what his doctors termed a miraculous recovery. After I read it, Lizzy simply said, "Just like me."


We feel that way now. It has been, from our view, a miracle that Lizzy is doing as well as she is. Today she was up and about quite a lot. We had to keep reminding her to sit and rest. She's walking almost normally and sat at the table with us for a while during dinner time. She's complaining of the itching around her bandage, but no pain at all (unless someone touches the incision site directly). Her back seems rather out of alignment, but it may just be the scoliosis is more clearly visible now because she's not flexible enough to compensate for it like she had before. Other than that and the shaved head and big bandaid, you'd never know she had brain surgery a week ago.


Lizzy will be back in Iowa City next Thursday to have her stitches removed and then will return in August for her next set of scans and checkups. We probably won't know whether the surgery has made a difference until August.


This will probably be my last daily post about Lizzy as we return to our "once-every-three-month" pattern. We do want to express heartfelt appreciation once again for each of you for the kind words of encouragement, cards, gifts, thoughts, and especially prayers for Lizzy.

Can you tell that Jacob loves Lizzy?

Lizzy wanted us to post another shot of her 4 1/2 inch incision. She's kind of proud of it I think. Tammy got to see the actual cut while the docs were changing the dressing. She says its pretty impressive.

Some dear friends made this quilt for Lizzy and presented it to her today. It's beautiful and she LOVES it!

Lizzy and Jake showing how tough they are!

Home again!

We made it home yesterday afternoon. It is soooo nice to be home! Lizzy is doing really really well. She hasn't had any pain medication (not even Tylenol) since yesterday morning and says she doesn't have any pain. I don't get that. I think if I had my head and skull and brain cut open I would be feeling at least some pain less than a week later!

The drive home was fairly uncomfortable for her - she really doesn't like wearing the neck brace, and we had to stop and rearrange things halfway home, but we made it without incident. Some kind friends brought dinner for us and after unpacking we were able to relax.

I don't think we realized just how tired we really were until we got here. We all went to bed by 8:30 and slept pretty hard until morning. It was good to start catching up a bit.

Lizzy is getting around pretty well. She's still unsteady on her feet, needing someone by her side in case she stumbles, but every day we see improvement. The PT taught her how to go up and down stairs safely and she does pretty well with that. She ate and drank a lot more yesterday which was a big relief to us ... that's been one of our bigger concerns.

She will be able to gradually increase her physical activity, but can't do anything strenuous for 3 months. It will take that long for her neck muscles to repair and restrengthen. After that point, she'll still have some limitations, but should be mostly back to her old self. I think within a few more days she's going to get very tired of sitting and lying around - she seems anxious to do more, but we've been cautioned to not go too quickly - it's not uncommon for this surgery to have to be repeated if things aren't allowed to heal properly.

Jacob was Lizzy's escort out of the hospital. He spent the whole morning with her and walked her out to the car. Before that, while Lizzy was getting her hair washed, Jake kept Hospi company.

Buddies - ready to go home!

Going Home!

We just wanted to let you know Lizzy is going home today. Yesterday they unhooked her from the IV fluids and she has done well enough that they are ready to send her home. She did throw up again this morning, but that made her tummy feel settled enough that she ate the most she has eaten in days (some applesauce and some raspberry sherbet). When I have some of my energy and focus return I will write more about the hospital experience. Right now I am grateful to be going home. I know there will be challenges there too, but we will be happy to all be together again. I also hope it will help Lizzy want to eat more if she is at home with foods she is used to eating. Thank you all for your support, comments, and especially your prayers. We have certainly felt the loving hand of the Lord in our lives through all of this.

Lizzy update

Lizzy continues to do very very well. She's pretty much back to her old self personality-wise. She hasn't had much pain at all, is doing more and more on her own and is starting to eat more. She's been able to go out for some pretty long walks ... still very slow and somewhat unsteady, but making fantastic progress. The neurosurgeons came and redressed her incision this morning and it appears to be healing well. They unhooked all her monitors and IV's today and mentioned it might even be possible for her to go home this afternoon, but we think it will more likely be tomorrow.

Thanks to everyone for sending comments to Lizzy's post. She's REALLY enjoyed reading those and appreciates very much the many people that are helping her. The cards, balloons, and visits have been much appreciated as well.

Lizzy went for a walk with mom and grandma out to see the fish tank last night.

Lizzy is still using the neck brace for support when she is up and about, but doesn't like it much.

We even went outside for a few minutes this morning to get some fresh air!

Some pictures

Lizzy shortly after surgery, still trying to wake up.

Lizzy in the PICU. The purple bear is a handmade gift from her good friend Annica. Lizzy calls this bear "Lucy".

After moving to the Pediatric Inpatient Area, Lizzy shared a room with her big brother Adam.

Lizzy feeling much better on Sunday.

Grandma and Grandpa gave her this penguin (not sure it has a name yet) and her special red blankie which she's had since she was a baby.

Lizzy with all her bears, including the big black bear she picked out especially for her surgery. She calls him "Hospi" (short for Hospital).

Lizzy has a hard time holding her head up, so we don't see this much, but she wanted us to post a picture of the bandage. They didn't have to shave too much hair, and any scars will be well hidden once the hair grows back in.

From Lizzy

Hi everybody! This is Lizzy. I'm doing well in the hospital. Thanks for all the nice gifts and cards and prayers. The worst part about being in the hospital is the nurses waking you up all night to check on you! The good part about being in the hospital is that everybody is taking good care of me. I feel like I'm getting better every day and I hope to get to go home soon! Thanks again for all the nice things you've done. Would you kindly leave a comment?

Happy Father's Day to me!

I've been able to spend a very peaceful and happy afternoon with Lizzy. She is doing great this afternoon! She had a rough morning, but has been so pleasant to talk to and be with this afternoon. She spent some time reading the blog with me (and wrote her own post - be sure to comment) and listening to music with me, and relaxing in the recliner. We even took some silly pictures which I'll post later. She's getting up and about more and was walking on her own (not real steady yet, but on her own). A physical therapist came this afternoon to show her some ways to relax her muscles, exercise her sore neck a little, and took her for a walk - all the way down the hall on her own! She's resting peacefully now (not drug induced -she hasn't needed any strong drugs all day).

Adam was discharged this morning and Tammy was able to take break from being with Lizzy and is spending some time this afternoon with the other kids. She's been with Lizzy almost constantly with very little rest ... I'm glad she's able to get away.

I was just thinking this has to be the happiest Father's day I've ever had. After this last month of constant worry and especially this past week (which has been very emotionally difficult), to be able to be blessed with an afternoon like I've had today - with my little girl who is going to be just fine - is the greatest gift I could ever ask for. I love all of my kids so much - I've been blessed with the world's greatest (and don't bother trying to argue with me on that) - and times like these help to bring it into sharp focus. I would never seek for challenges like this, but I'm grateful for how they can help bring life into perspective. I'm a very blessed father today.

Update - Sunday morning

Another day has passed and we continue to see progress. Yesterday was a big day for Lizzy. They removed a couple of her IV's and her catheter and got her out of bed for the first time. She was very shaky walking - she almost had to be carried. Without the catheter, she's had to get up to go to the bathroom several times and she's gotten a little stronger each time. She still needs a lot of support, but progress is a good thing. Last night she showed the first signs of having an appetite, drinking a little broth and eating a bit of a popsicle. This morning, she's going to try some jello. That's one of our bigger worries - if she can get to eating more, it will be a good thing.

Yesterday afternoon, she had quite a lot of pain - the 36 hour pain block the surgeon put directly into her incision had worn off and they're weaning her off of stronger drugs like morphine and trying to get her onto just Tylenol. She was feeling somewhat better overnight, but still hurting a lot.

The other big news is that she moved out of the PICU down to the regular inpatient area. They moved Adam's roommate out, so Lizzy could move in to Adam's room. That was really nice for Tammy and I so we could be with both our kids (and I was able to finally go back with the other kids last night at Todd's).

Adam is still there, but we're feeling confident that he'll go home today. He was feeling just fine all day yesterday. They took out his IV and he was free to move around as much as he wanted. He was loving it ... Just pick up the phone to order whatever food he wanted, ESPN all day, and a playstation built right into his bed. What could be any better?

We had a few visitors yesterday. Our bishop and his family came to see the kids and brought balloons. We really appreciated seeing them and their taking time to visit. Later in the day, we had a surprise visit from our old home teacher and good friend from Bettendorf, Brother Moose. He was in town for a meeting and it was very kind of him to stop by and see the kids. Anna, Jake, and Ben also came for the first time. Lizzy was more animated when she was talking to Anna then at any other time since her surgery. It was fun to see that. Anna is great for Lizzy.

Update

Yesterday was another long day. Lizzy is looking stronger and is more awake and alert. She's still in a lot of pain and very uncomfortable, but we see improvement. Every time I make it up to her room, she looks stronger and better to me. Her biggest problem right now is that she's still not eating. To perform her surgery, they had to spread her neck muscles apart and they had a breathing tube down her throat. Those two things together cause really strong pain whenever she tries to swallow anything - even water. Late yesterday, she was able to drink some, but ended up throwing it all up later. So, until she is able to eat and keep something down, she'll remain in the PICU. She did rest a little better last night.

Adam is still in the hospital as well, but we think he'll be going home today -at least we hope. It's been hard for all of us since Tammy and I have both had to stay at the hospital all the time. The other kids haven't even seen us since Wednesday. As I mentioned yesterday, they are mostly worried about an obstruction, but haven't found anything. He had a CT scan yesterday which didn't show any problems. I think it's just a virus, but because of his history, they are being very cautious. He hasn't been allowed to eat anything since he arrived (nearing 36 hours), so he's hungry, but otherwise doing okay. I think they're going to let him eat today and may watch how that passes through before letting him go.

This morning a doctor came to Adam's room and said, 'We don't have the schedule yet, but we'll be coming to bring you to the OR later to get that gall bladder out'. I said, 'WHAT? I hadn't heard there was a problem with his gall bladder.'. He responded, 'Yeah, the scan yesterday showed that's what's been causing all the pain. He's passing stones down his tract and we're going to need to remove the gall bladder.' I said, 'This doesn't make any sense. They told us last night that there was nothing abnormal in his scan and they just wanted to observe him one more night. I thought we were going home this morning.'. 'No, I'm sorry, we're going to have to bring him to surgery today.'. I finally said, 'Are you sure you're talking to the right patient?'. He looks at his chart and then looks up sheepishly and starts apologizing. I just laughed ... After all we've been through the last few days, I was not at all surprised.

Lizzy update and a new twist

Lizzy had a really rough night. She's starting to feel a lot of pain and has been much more restless. She's had some problems with her catheter and the collar she has to wear is bothering her a lot. It's nothing abnormal, we've been expecting that today would be a hard day, but it's really hard for her and Tammy who stayed with her all night. The doctors are still saying that she's looking very good - she has good color in her skin and her vitals are in good shape. She's very communicative and able to express what's going on. Everything points to a normal pattern of recovery, but she will have several very difficult days coming up.

In other news, I spent the night with Adam here in the hospital. As a patient! We've never had any of our kids ever stay a night in a hospital (other than as a newborn) and now we have two kids on the same night! Unbelievable!

I left Lizzy and went home (to Todd's house) around 9:00 last night and found Adam writhing on the couch with severe abdominal pain. His uncle and grandpa (both doctors) had been with him as his pain increased and both were concerned that he had all the signs of appendicitis and recommended we bring him to the emergency room. So, I turned around and rode with Adam as grandpa drove us back to the hospital.

Some of you may remember that when Adam was born, he had abdominal surgery to repair an omphalocele (Adam was born with some of his intestines outside of his body and had to have that repaired the day after he was born). A common complication of omphalocele is an obstruction in the intestine caused by twisting or intestinal damage from when he was a baby. This will often show up during adolescence.

After a couple of hours in ER, Adam was given a room and will be kept here for a couple of days in observation. The surgeon thinks he could have a partial obstruction (there was some evidence of that on his xray, but nothing definitive) so they just want to keep an eye on him. He's had a couple of other episodes like this recently so we'll see how it progresses. He is feeling much better this morning, but he'll be hanging out at the hospital today too (but probably not needing a surgery thankfully).

Problems always seem to come in waves! Lizzy is still by far our bigger concern right now, but we'll keep you posted if anything changes with Adam as well.

Lizzy--2:15

We made the transition to the PICU. All the nurses have been great. Lizzy is sleeping peacefully now. They will wake her every hour though. Greg and I are surprised how good she looks. The anesthesiologist warned us she may have to have a tube in her throat for a few days because of the loss of gag reflex. It was a very pleasant surprise that she does not. She is definitely not bright eyed and bushy tailed, but she has been able to answer questions when asked and move when asked. All in all, we feel the heavens beaming down on us. We thank all of you for your prayers.

Update -1:15 pm

I'll write more later, but wanted to let everyone know that Liz is awake and doing fantastic! She looks so much better than we expected and is talking and responding to questions. Thanks again for your many prayers for her. I'll post more details later.

Surgery update 11:15 am

The nurse from the OR just called. They are beginning to close and will be done in about 60-90 minutes. She said that everything has gone very well so far. It's been a VERY long four hours not knowing anything, and it is great relief to finally hear something. We know there Is still a long difficult road ahead, but are glad to be past this first major hurdle.

Lizzy surgery update

Lizzy's been in surgery for about an hour now. She was very brave this morning and didn't show much fear. It was definitely a hard thing to see her go this morning.

We probably won't hear anything more until around noon. With this surgery, they really don't know how long it will take - could be anywhere from 4 to 8 hours.

This is Lizzy in her cool surgery clothes.

Tammy went with her to the operating room until she was asleep.

Lizzy surgery - Day 0

Today we spent a long day at the hospital doing a lot of pre-op stuff. Lizzy started with a brain MRI ... they were mostly checking to see if she had hydrocephalus (which fortunately she does not, but CMI can sometimes cause that as well). MRI's are no fun anyway, but Lizzy said they put some kind of warming blanket on her to keep her warm and it was way too hot.

Next stop was the neurosurgeon's office to get final instructions for tomorrow. We talked with Dr. Menezes again and were again very impressed with him. He is so kind and shows a lot of care and concern toward Lizzy. His staff is excellent too and we enjoyed our visit with them.

This is how Lizzy thinks she's going to look tomorrow.

We made a quick stop at the vampire lab so they could take some of Lizzy's blood. Fortunately, it doesn't seem to bother her too much to get poked. She said she likes watching the blood get sucked out of her body and didn't complain a bit (she did better than I usually do when I have to have blood drawn).

We didn't have time for lunch, so we stopped and grabbed a cookie, then headed to the EEG lab. Here they were measuring how long it takes to get an electric current from her wrist to her brain. This was the least pleasant stop of the day ... Lizzy had to be shocked 2000 times and with each little shock her fingers and thumbs would wiggle. The purpose of this was to get a baseline measurement of how her brain is responding to the shocks. Tomorrow during surgery, she will be monitored continually for any changes in this response.

These are pictures of Lizzy before the shocking began. She wasn't smiling so much by the end.

Our last stop of the day was with the anesthesiologist. Nothing abnormal here ... he was just getting us prepped with instructions for tomorrow.

So, the schedule for tomorrow - we arrive at the hospital a little before 6:00 am and surgery starts at 7:15. The doctor has 6 1/2 hours scheduled for the surgery, but thinks it will be over in about 5 hours. We'll post updates as we know more.

Thanks for the continued prayers for Lizzy!

(p.s. I forgot to switch users ... this is Greg writing, not Tammy)

Lizzy - bad news

In late April, Anna and Lizzy had their annual checkup with the doctor. During Lizzy's exam, the doctor noticed a couple of things that were concerning: she had a curve in her spine and her reflexes were not responding normally - one of her knees would kick out very strongly and the other wouldn't respond at all (we later learned that the one knee was the only reflex in her body that was responding - all others including her gag reflex are dormant). So, Lizzy got sent upstairs to see the Orthopedic doctor about the curvy spine. He took some X-Rays and measured the curve at 30% - she officially has scoliosis (and it's fairly advanced for her age; normally scoliosis doesn't present itself until adolescence). The doctor said there were some other abnormalities so he wanted her to have an MRI to 'rule out some things.

The next day, Tammy took Lizzy to have her MRI ... that was a pretty scary ordeal for Liz - she had to lie perfectly still for a very long time (many children have to be sedated). She did wonderfully and made it through wide awake. Before leaving, Tammy asked for a copy of the MRI which she took home and immediately sent to her brother Todd who is a radiologist at the University of Iowa Hospital. Within a couple of hours he was able to call and let us know about additional things going on inside Lizzy, and they weren't good.

Lizzy has what is called a Chiari Malformation type I (CMI). CMI is caused when the brain grows down into the spinal canal ( because the skull is too small) and blocks the normal flow of cerebral spinal fluid. This, in turn, can cause pressure on the brain stem and can lead to all kinds of pain and motor control issues (in Lizzy odd or no reflex response).

Lizzy also has what is called syringohydromyelia, which is the direct result of the abnormal fluid flow caused by the CMI. Instead of flowing nicely down the outside of the spinal cord as it's supposed to, the fluid is being forced inside the spinal cord and pools there (the pocket of fluid is called a syrinx). Lizzy's syrinx runs the whole length of her spine and has caused her spinal cord and spine to be twice the width it is supposed to be and is the cause of her scoliosis. A syrinx can cause nerve damage and a wide assortment of motor problems because it interferes with signals being transmitted between the brain and the rest of the body. Lizzy's syrinx is beginning to grow up into the brain stem area and cause further pressure on the brain. Because this part of the brain is where the breathing and heart are controlled (we later learned that the syrinx is within 1 mm of where her breathing is controlled), if left unchecked, this can become a life threatening problem.

The good news is that this can all be corrected. There is a surgery that decompresses the area where the brain is plugging up the spinal canal which should relieve pressure on the brain stem and restore normal flow of fluid. We've been told that once that happens, there is a 60-80% chance the syrinx will collapse on it's own, 80% chance her reflexes will return to normal, 60-90% chance her scoliosis will stop progressing or self-correct. The problem is that the surgery is fairly invasive - parts of the skull are removed, some of the upper cervicals are removed, and sometimes brain tissue is removed to create the space for the fluid to flow. There will be a week long hospital stay after the surgery and a long recovery period afterwards.

All-in-all, it's a very scary thing for an eight year old to have to face. Because Lizzy is so bright and attentive and inquisitive, she understands very well what is going on and what she's going to have to go through. As you can imagine, it's caused a lot of emotion and fear, but all-in-all, she's been amazingly strong through the whole ordeal and has remained very optimistic through it all. She is truly an amazing young lady and we are so proud of her for how she's handled this wave of bad news in her life.

Her surgery is scheduled for tomorrow - June 16. We'll be updating our blog periodically throughout the next few weeks. It's a worrisome time for all of us, but we have great faith and confidence that everything will turn out well in the end. We have already seen many miracles and blessings during the weeks leading up to this. I wanted to record some of them here.

Count your many blessings:
1. Lizzy's problems were discovered before it was too late - one more millimeter and it could have been devastating.
2. Lizzy survived gymnastics. The surgeon said even a minor neck injury with this problem can cause things to spiral out of control and end in tragedy.
3. We have one of the world's best surgeons for this procedure living in Iowa. Dr. Menezes is world renowned for his work with chiari and syringomyelia. He's quite literally written the book on treatment of this problem and specializes in working with children. He's performed this surgery more than 1500 times and is the surgeon that will be working on Lizzy.
4. Tammy's brother happens to work at the same hospital as that great surgeon and was able to help us understand the problem early and track down answers to our many questions for us. He and his family have been very kind about letting us stay with them during our visits to Iowa City and will be watching our kids throughout this week for us - we are so grateful they are here.
5. We got in to see Dr Menezes within a couple of weeks of diagnosis. He told us he has a 3 month waiting list and wasn't sure how we were able to get in to see him so fast. We think our orthopedic doc was insistent that she needed quick attention, and for that we are grateful.
6. Lizzy was scheduled for sugery so quickly. Normally another 3 months passes before the surgery is done, but he had a cancellation, and he gave the spot to Lizzy.
7. That Lizzy hasn't already had more serious problems. Dr. Menezes has been amazed that she hasn't had more trouble with a syrinx as large as hers. He repeatedly asked us about her breathing, swallowing and walking.
8. Our friends and family have been so kind to us. We've wrecked all kinds of summer vacation plans for family, but so many have dropped everything to come to our aid and be here for us. And our friends have been remarkable in the ways they've given for us and especially for Lizzy.
9. Above all else, faith is alive and well in so many good people. Literally hundreds of people all across the country are praying for Lizzy, including many who joined with us in a special day of fasting and prayer for Lizzy last week. That alone has meant so much to us and we so appreciate it!
10. Spiritual gifts are real, in particular, the gift of the comforter. We are so grateful for the amount of comfort and peace we have felt through this whole ordeal and know that that is a gift from God.

This time has really heightened our awareness that the Lord loves and cares for us, that he is very aware of each one of us. Please continue to pray for Lizzy this week. We will try to post at least once a day with news of her surgery and recovery.

Lizzy-- good news

Our Lizzy certainly has had a lot going on in her life the past several months. I am going to cover the good stuff in this post and Greg will cover the other in another post. There is a reason we saved her for the last sweeping post on the kids.

On March 4^th of this year our beautiful daughter turned 8 years old. In our church 8 is a special number. When you turn 8, we believe you have reached the age of accountability. In other words you can tell right from wrong. This is the age when our children our baptized. Lizzy celebrated her birthday with our family, and some extended family, and then the next day, she was baptized. We are so proud of her for making this choice. It was a lovely service. Her brother Adam spoke on baptism. Her great grandma spoke about receiving the gift of the Holy Ghost. Her Aunt, Uncle, and cousins sang a musical number. Her dad baptized and confirmed her a member of the church. Our good friends came from Bettendorf to be with her, and she even had her best friend from school attend. We also had a few friends from our ward come and support us. It was very enjoyable. It is something that will bless her throughout her life.

Here is Lizzy with her dad (we lovingly call him Papa). This is a special day for both of them.

The kids on Lizzy's baptism day.

Our family on Lizzy's baptism day.

Us and our extended family on Lizzy's baptism day.

Lizzy with her good friend from Bettendorf, Anne Marie.

Lizzy is full of energy and life. She has continued to enjoy gymnastics. She especially loves the bars and the trampoline. She would look forward to attending gymnastics each week. At the end of this school year her teacher wanted to skip her up two levels because she needed more of a challenge.

She is also a great friend and “mini-mom” to Jacob. She is so kind and helpful with him. They have a lot of fun together, but it sometimes does require a lot of patience on her part. I certainly appreciate how well she handles him. Sometimes she can convince him of things that I can’t. Really she has a good relationship with all of her siblings. She kind of serves as the bridge between the older two and the younger two. She is versatile in her play and in what each relationship requires. She would much rather be interacting with them than doing her chores!

Lizzy is successful in many ways. She does very well in school, earning the praise of her teacher for both academic skills and character traits. She loves to read and write. She has started to really enjoy historical fiction books. Greg is always amazed at her ability to really get to the heart of a problem and figure it right out. Lizzy has also done well in piano this year.

She is very strong and determined (OK, sometimes stubborn) and doesn’t like to fail. Her energy and enthusiasm are not just physical. We are so happy to have her as our daughter. We love you Lizzy Lou!

Here is Lizzy in her brand new head band. It was a gift from our dear friends the Jensens, in Bettendorf.

Lizzy on her birthday. She is enjoying her birthday meal of Pasta Alfredo and chocolate milk.

This is the group of girls that attended Lizzy's birthday party. They decorated aprons and cupcakes and had a lot of silly fun. Lizzy is third from the right.

Silly girls.

Jacob and Lizzy, the best of friends.