Sunday, March 30, 2008

Relaxing weekend?

So much for a relaxing weekend! It was fun, but fast-paced.

Saturday morning I called the pediatrician on-call to find out how Drew's calcium labs looked. He said they were in normal range so yesterday was the first day in over 4 years that Drew didn't take his calcium! One more blood test next Friday and then we can officially kiss the calcium goodbye! We decided to make an impromptu trip up to Daffodil Hill to see the beautiful daffodils. Unfortunately the weather wasn't cooperating and it was cold and foggy. The flowers still looked pretty though and we got some cute pictures. Poor Drew was freezing and Dan had to keep him wrapped up in his jacket. We ended up stopping for lunch at a tiny little Mexican restaurant in Jackson that wasn't really prepared for our party of 7 adults and 6 children. It took about two hours to finish our meal and then we made the hour drive back down to Sac. And then we remembered that we need to pick up the dang medication at the pharmacy! So we went on the way home and didn't get home until 5:00. We had made plans to have friends over for dinner at 5:30 so we rushed to get the house cleaned up before they arrived. We ended up having enough time to clean up before they got here and then we had a really fun time with them, although it was a little hectic with the five kids running/crawling around. After dinner I was exhausted!

Daffodil Hill in the fog

Our family with the flowers

Dan trying to keep Drew warm

This is five days worth of sildenafil. We calculated it out and it's $1 per ml and he takes 12 each day.

This morning we got everyone ready for church and out the door by 10 am. Dan and I ended up volunteering to work in children's church so we didn't hear the sermon. But it was fun to be with the preschoolers. They are all getting so big! Then Drew had a birthday party for one of his preschool friends at 1. And I had to leave around 2 for a birthday party for one of my friends. I ended up getting home a little after five and then we went to Target for some essentials and then to the bike store to try and replace some of our equipment, but it was closed! So we headed home, had leftovers for dinner and Dan ordered our biking stuff over the phone. Phew. Maybe next week will be relaxing.

Drew at Elizabeth's birthday party

Saturday, March 29, 2008


Yesterday was a very busy day. I would say at least half of it was spent arguing with people. It started off with an argument with my husband, which even though it was quickly resolved set the stage for my mood for the rest of the day. I asked him to go to the grocery store to get a few items for dinners I was making for two families from church who just had babies. And he told me that he had been "doing a lot." It is my guess that every stay-at-home-mom has had this discussion with her husband, so I will let you use your imagination as to how that conversation went. Let's just say there were some words about the things that I do, some door slamming, and then I went to the store myself. Got home, made the marinade for the chicken, got myself ready for the day and realized there were some people I needed to call.

The day before I had called the pharmacy to refill Drew's sildenafil. I had enough to get me through part of Sunday and I know they like to have the request on a weekday and have at least a day to get it done. So I called Thursday. Friday Drew needed to have a blood draw so I thought I could just pick up the prescription when I was there for that. But the lady on the phone gave me a hard time because I wanted to pick it up in 20 hours instead of the 24 that they prefer. Sheesh. She tried to tell me it takes 24 hours to make it, but I know it only takes an hour because they've forgotten to make it before and I've only had to wait an hour. Anyway, I was like fine, I'll call in the morning before I come to see if it's ready. Then she calls me back and says we're out of refills. So I call the cardiologist and leave a message that we need him to call in a new prescription. Then the pharmacy lady calls me back again and says we got the refill from the doctor but the insurance is not going to pay for it because it hasn't been 28 days. How many days has it been? 17. That is nowhere close. She said we'd have to pay for it ourselves if we wanted it filled and it's $512. (I won't even mention the conversation I had with Stanford the same day about authorizations and referrals and who needs to send them where and then with UCD with differing information about the same things. And how they all seem to expect me to know what the heck to do when I've never done this before. )

So that brings me back to yesterday when I called the cardiologist-on-call, because apparently it was Cesar Chavez day and the hospital was closed. I asked him what we should do, if we should give the medicine twice a day instead of 3 times a day, or give him less, or what. And he said that probably the pharmacy didn't give us enough medication. Which I never even thought of! But in order for us to be ten days short we would have had to lose 120 mls, about 4 ounces of medication. There is no way that I spilled or lost 4 ounces of medication. So I called the pharmacy and argued with them about that for a while. We never did get it figured out because of the dang holiday. The pharmacist said he would fill a Rx for a 5 day supply and it would only cost us $75 and when the original pharmacist got back we could figure out if they made a mistake or not. Whatever.

By then it was 12 and I still had to take Drew for his blood draw to check his calcium and then over to a birthday party that started at 1. And we hadn't eaten lunch. We left for the lab and the woman there did a good job and got blood with only one stick! I'm wondering if he's getting easier now that he's older, although he still has a terrible time with IVs. He still doesn't want to get blood drawn, and he cries, but can calm down pretty quickly. This time Grandma sent 3 light up cars for his prize and he really likes them.

Then we drove through McDonalds, since we still hadn't eaten anything and went straight to the party. After playing at the park for a couple of hours we drove home and I started cooking. As soon as the food was done it was time to deliver it to the two families and I was meeting some friends for dinner. In the craziness I had forgotten to make dinner for my own family! No wonder my husband "does a lot!"

Here's hoping for a relaxing weekend!

Wednesday, March 26, 2008

Blessed Be Your Name

Here is the video of Drew and his friends singing at church on Easter Sunday. This happens to be one of my favorite songs and always makes me cry, especially the "He gives and takes away" part. I'm hoping maybe I can just picture my little guy singing it next time and it will help me not to cry. Also, I have no idea how to edit or do anything with video and I'm very disappointed in the quality of this video. The file was over 500 MB so I thought it would be better. If anyone can help me in this area please email me!

Some Funny Stories

I'm still working on uploading the video of Drew singing at church, but in the meantime I have a couple of funny stories to share.

Last night Dan and I had the opportunity to go on a date. Thank you Linda and Kevin for making this possible! When we lived in Davis every time we went out it was for Thai food or Indian food and we hadn't found a good Indian spot since we moved to Citrus Heights. We saw one near the gym and decided to give it a try. Well, after we got the kids all situated we headed over into Carmichael, only to see a giant sign in the window "Closed Tuesdays." That's an odd day to be closed, but ok. Luckily we have our little GPS navigation system and we looked for the next closest Indian Restaurant. We found one in Orangevale. So we followed the navigation back over that way and when we got there, saw that it was out of business. By this time it was almost 7 and we were getting really hungry. We thought we'd give the GPS one more chance and followed the directions for the next closest place in Roseville. And that place was a little cafe, the kind where you order and take a number and they bring your food to the table. That's not exactly what we were looking for and we were a little disappointed, but there happened to be a very nice Sushi restaurant in the same center. So we ended up going there and enjoying our date very much! We were not about to let a little adventure ruin our evening out!

Today Drew was standing with his foot in the dog's empty dish. I asked him to take his foot out of the bowl and he didn't respond. I said "Drew! I'm going to count. 1, 2, 3." He slowly took his foot away from the bowl and said with total innocence, "You're a good counter Mom." Dan and I both had to laugh at that!

And Ava! She says funny things, but it's usually the tone that is the funniest. Lately she's been saying things like "Don't touch, Daddy!" "Don't wantto diaper change!" or "No Mommy!" I think I'll have to capture it on video so you can get the full effect.

Monday, March 24, 2008

Easter Photos

We had a great Easter weekend. We colored eggs on Saturday afternoon and both kids really enjoyed it. Sunday morning the bunny came and filled our baskets and hid eggs all over the house. Ava wasn't feeling well so she stayed home with Grandma while the rest of us went to church. Drew sang Blessed Be Your Name with his preschool class at church and did such a good job singing! He looked a little scared, but it's progress! I tried to upload the video, but I don't think it worked so I'll try again later.

When we got home from church we all helped prepare the Easter Dinner. This year we had a Martha Stewart Easter and used her Easter menu. It turned out really good, although we didn't eat until after 7 because we forgot to factor in that our ham was frozen! We had deviled eggs, ham, scalloped potatoes, roasted asparagus, and lemon cake. We had fun visits with Grandma Kathy and Uncle Scott, Aunt Marie and Uncle Terry, and Adam and Becky and spent lots of time playing outside.

Saturday, March 22, 2008

Friday, March 21, 2008


We had good news from endocrinology today. Drew has been taking calcium every day, at least twice a day, since he was born. But today, we finally got the news that he may have outgrown his need for extra calcium. Yay! He is currently taking it twice a day so we were told to do it once a day for a week and then we will check his blood calcium levels next Friday. If that looks ok, we will discontinue it all together and check his blood the following Friday. And if that looks good then we can discontinue the calcium completely and we will be down to only two medications! AND the doctor said he'd like to see us in six months and that may be the last time we ever have to see endocrinology!

The kids looking out the window at our appointment today

After our appointment I took the kids to the zoo to meet some friends. It was a beautiful day, but a little windy. Ava loved the penguins, the flamingos, the parrots and the tigers. She was so cute and was saying bye to all the animals. Drew loves the lions and tigers and the crocodile. He mostly just had fun being with his buddies. We had a picnic lunch and ended the afternoon by taking a ride on the train. Both kids were exhausted and fell asleep in the car on the way home!

Drew and Ava at the zoo

Looking for the lemurs

Zoo Friends

On the train

Thursday, March 20, 2008

Surgery Date and other stuff

I spoke with Stanford this morning and we have a date. May 23. I think that sounds like a great date for surgery. Drew will be out of school by then, we'll be out of RSV season, it's after Ava's birthday and Mother's Day and it's still early enough in the summer that we can enjoy the fun summer activities after Drew's fully recovered. So May 23 it is.

This day has been exhausting. First of all, it started at 5 am. That is exhausting enough. I feel like I have been on the phone all day long! I called Stanford to schedule surgery. I called UCSF to schedule the developmental assessment (more on that later). I called UCSF again to get Drew's immunology lab results faxed to me so I can bring them to his appointment tomorrow. I called the alarm company to make an appointment for them to install a sensor on the exterior garage door. I called the community police officer twice to get them to come out and look for fingerprints (they couldn't find any). I called a locksmith to come and install a deadbolt on our connecting door to the garage (he already came and did it!) Dan called the insurance company then they called back and I gave them the recorded interview. And in between that I took Ava to her first gymboree class and have swept, vacuumed, and cleaned counters in preparation for lifegroup tonight. I still need to go to the store and buy my items to bring for dinner tonight.

When I called to schedule the developmental assessment it was the same psychologist who evaluated Drew because of his participation in a cardiac MRI study. Well, they wanted to evaluate him again when he was four so she is going to try and coordinate with them so this assessment will work for both reasons. So we don't have a date on that yet, but it will be in April.

I got Drew's lab results from immunology and I noticed something that bothered me. I haven't had a chance to discuss it with the doctor yet, but I will be making a phone call. Drew's CD3s, which are the T-cells that we care about, were lower than they were last time. They were 36%. I don't think they've ever decreased before, so I'm not so happy about that. But he has been healthier this year than he's ever been before, so I'm trying not to worry about it too much.

Rude Awakening

This morning at 5 am there was loud knocking at the door and the dog was barking. I woke Dan up and he heard the really loud knocking again. He went to the door and it was the police! Nothing gets your heart racing like waking up to the police at your front door. The officer said our neighbor had called because our garage door was open and he wanted Dan to look and see if anything was missing.

It was. About $4500 worth of equipment was stolen while we slept! And our dogs, who bark like crazy anytime anyone comes to the door, didn't make a peep. They stole three of our bikes, worth more than $3000, our new bike trailer to tow the kids that we used once, my snowboard and boots which I used for the first time yesterday, and Dan's snowboard and boots. At first we thought we left the garage open after we unloaded our snowboards yesterday, but then we remembered Dan took the trashcans to the street right before bed and he would have noticed it was open. They got in by breaking the glass on our garage door, and then reaching in to grab the release and rolled up the door. That is pretty bold! And they must have been prepared because three bikes, the trailer, and two snowboards would take up a lot of room and required multiple people or lots of trips. Someone is coming later today to check for prints on the door, but I can't imagine you wouldn't wear gloves if you're going to stick your hand through a broken window. The best we can figure is it happened sometime between about 12:30 when we went to bed and 3:30 when our neighbor first noticed the garage was open (no idea what he was doing awake at 3:30, but we appreciate his diligence in looking out for the neighborhood).

As much as it sucks to have our things stolen, it's just stuff. What really bothers me is the feeling that we are not safe. We are lucky that we were only dealing with thieves, because it would have been so easy for them to walk through the door to the house and come inside where my babies were sleeping. That is scary. And of course, they broke in through the only door on our entire house that is not alarmed! So I'm going to call the alarm company today and see if we can put a sensor on the garage door. I also want to get a deadbolt for the door from the garage to the house. And we have to replace the glass on the exterior door so they can't just come back again tonight for more stuff. Luckily the car was untouched, but it was unlocked so I'll make it a habit of locking the car even when it's in the garage.

Anyway, this morning I'm thanking God that we are all safe and everything that was stolen is replaceable.

You can see the broken glass and the release that they used to open the door

Our empty wall of fun: trailer hung from the hook on the far left, bikes from the three hooks in the middle, and snowboards on the sets of hooks on the right.

Us and our bikes in happier times

Wednesday, March 19, 2008


Dan and I got to go up to the mountains to snowboard today! I haven't been at all yet this season so I was very excited to try my new board and boots. We had a fabulous day! The weather was beautiful this morning, but got a little cold and cloudy in the afternoon. Our friends Jeff and Pete met us up there and we had a lot of fun! The kids had a great time at Aunt Marie's house visiting with her and Grandma Honey.

When we got home we had messages from three hospitals! UC Davis called to remind us of our appointment on Friday, UCSF called to set up our developmental evaluation, and Stanford called to schedule surgery. Of course they called when we weren't home! So I will call them back tomorrow and hopefully we will have a date. It was so nice to have some alone time with Dan today, especially since things may be getting a little complicated here soon.

Self Portrait on the lift

Jeff & Pete

Enjoying a beer after our fun day in the snow

Tuesday, March 18, 2008


Today we drove to San Francisco for Drew's immunology appointment. We left around 7:15 am and didn't get home until almost 3:30 pm. Thank goodness we all went, so we could at least use the carpool lanes that require 3 people per vehicle. The kids were great on the almost 3 hour trip there and we made it just in time for our appointment at 10.

We saw the fellow first and then the "real" doctor. These appointments are not usually very exciting, the real reason we are there is to do blood work and we won't know the results of that right away. We did talk about the big three-his heart, his immune system, and his development. We've got heart surgery coming up (still no word on the date from Stanford) and the doctor thinks we need to worry about that first. OK, I seem to do that pretty easily. They asked if he's had any infections since we saw them last. I think he's had an ear infection and there was the hospitalization in September that ended up being croup. Overall, he's had a very good year as far as sickness goes. She did say that he is severely immunodeficient. The last time we had his T-cells checked was last June and they were 38%. Normal for his age is 55-65%. Typically they don't give the live virus vaccines (MMR and chickenpox) until the kids reach 50%, but she said 45% might be acceptable. I asked how he could have such low T-cells but be still be so healthy and she said it is because he receives "good care." That made me feel good about myself and she said I should absolutely continue in my "germophobic tendencies" until his T-cells are up and she tells me to stop. So I guess I'll keep wiping down the shopping cart and coating the kids in purell every time they touch any surface in public.

They asked if Drew knows his letters yet. And I was proud to say that he does and all the sounds that they make. The doctor said that although lots of DiGeorge kids have trouble in school he seems like he won't have much trouble. I was glad to hear that! She still would like to have a developmental test done to get an idea of where he is at. She said it would be beneficial for us as his parents and for his preschool teachers. She'd like to do it before his surgery though because she said it can take kids up to a year to recover from surgery to really get an accurate developmental assessment. That makes me sad. Even though I'm sure it's true, I don't like to think that it could take him a full year to get over the trauma of surgery. Poor little guy.

Then we had the blood test. I told Drew right before we got to the appointment that he was going to have a blood test afterwards. He seemed ok with it then, but when we got into our room he said "I want Ava to get a shot." I had to tell him it wasn't her turn, but that he would get M&Ms afterward and grandma would buy him a present for being so brave. When we got to the lab waiting room I kept him distracted with his I Spy book. There were a ton of babies waiting to get their blood drawn! I've never seen it so busy there. So there was a lot of waiting, but I used the time to explain everything that was going to happen. First she would pull up his sleeves and look at his arms, and that part wouldn't hurt. Then she would tie a strap around his arm, and that part wouldn't hurt. Then she would put the needle in, and that part would hurt a little bit, but then it would be over and he could have M&Ms. When it was his turn he walked back to the phlebotomist, who is very good at what she does, but not very kid-friendly. He started to get upset, but he calmed himself down with deep breaths and thinking about what grandma would get him. The phlebotomist is so great, she got blood on the first try and she had to collect four vials! While the needle was in his arm and I was asking him what he wanted from grandma he shouted "I want a dinosaur! I want a T-rex!" and it helped to distract him. Once he got down and knew he was safe he said "That part's over!" and was back to his normal happy self.

So, it was a pretty good appointment. This doctor has not always been so positive, so it was nice to hear that she thought he was doing well. We were also able to do labs for his endocrinology appointment on Friday so we can avoid a second blood draw this week. I'm so proud of my brave boy.

Friday, March 14, 2008


Well, I hadn't heard back from Stanford yet so I called them again this morning. I guess Dr. Hanley was out sick for a few days and now is in surgery so the coordinator hadn't had a chance to ask him about scheduling yet. So we will wait a few more days.

We do have an appointment at UCSF next Tuesday though. It is a follow-up appointment with immunology and it's long overdue. I think we were suppose to go in December. They will be checking his T-cell levels and we are hoping they are high enough that he can finally receive his live virus vaccines. I'm also hoping that the phlebotomist can get it in one try. Then on Friday we have an appointment with endocrinology. They follow his low calcium. Which reminds me, I should see if UCSF would be willing to check his calcium and parathyroid levels when they draw blood so that he doesn't have to get stuck twice in one week. Good thing he has this week off of school, or we'd be very busy!

Here's some random pictures from this week:

Ava has been interested in the potty, but so far has not been very successful. She usually tells me she wants to sit on the potty right after she goes. So in this picture her diaper was already wet but I let her sit on the potty for a while anyway. I left the room for 10 seconds while I went to get a new diaper and this is what I came back to!

Last night I was trying to entertain the kids without making a huge mess in the house, since I had just cleaned it. I had bought this sticky foam kit from Michaels and they both enjoyed making crosses for Easter. Ava especially loved it! I didn't get any pictures of Drew making his because he had already moved onto something else, probably airplanes. The three on the top left are Ava's, the three on the bottom left are Drew's, and Dan and I made the other ones.

Tuesday, March 11, 2008


I called Stanford yesterday to schedule surgery. The coordinator I spoke with said she needs to talk to Dr. Hanley to see what day he'd like to do it. I guess he only does surgery on Wednesday-Friday. She said there are a couple of days left available in April, otherwise we'll be in May. I should hear back from her tomorrow or Thursday.

Now my prayer is that everything will go smoothly with the insurance. Stanford is a covered hospital on our plan, but they need to accept the authorization from our cardiologist. The coordinator said they usually can get it worked out and sometimes the cardiologist has to write a strong letter to the insurance company. She also said sometimes Dr. Hanley himself writes a letter. So we'll pray that it all works out. It would be awful to spend all this time thinking and coming to a decision, only to find out that the decision has been made for us.

Sunday, March 9, 2008

Life is good!

Right now I am sitting in my beautiful backyard looking at our flowering peach tree, the camellia that is blooming, the flowering plum and just soaking up the sunshine & listening to my ipod. It is almost 80 degrees with a hint of a breeze. Dan took Drew to the park to play with their remote control trucks and Ava is taking a nap. A perfect Sunday afternoon.

At church this morning we talked about suffering and submission to God. I keep hearing this theme of submission or surrendering and I am trying to see what I need to surrender to God. I guess I need to surrender this entire situation and quit worrying about it. Easier said than done, but I am going to try. In the car on the way home Dan and I discussed again what we should do about coming to a decision regarding surgery. We thought maybe we should schedule surgery at Stanford, but still ask questions as we think of them.

When we got home I had an email from Dr. Mainwaring, a pediatric heart surgeon at Sutter, waiting in my inbox. Is that an answer to prayer or what? I have only met this man a few times, but I really love him! We sent him an email through a friend with a few questions we had and he took the time to write out a thoughtful and loving response, even though he has absolutely no obligation to do so. Here's a bit of what he said:
It is evident that you love your son very much and want to make the very best decision for him. It is a paradox, because it is the love for your son that makes this decision so difficult—it is an indication that you are great parents and care so much, and you should always view this as a virtue (and not a liability). If you didn’t care so much, then all these decisions would be much easier.

I think it is great that you have turned to your faith in God to help you through these difficult times. The scripture that you quoted from Proverbs suggests that if you have faith in God then he will make your pathways straighter—no doubt confusing in light of the fact that you have been presented with no less than three potential paths. Which one should you take? Unfortunately, the Bible makes no comment about Drs. Hanley, Raff, or Azakie. But I do believe that your faith will ultimately assist you not only in making a good decision for your son but also give you the strength to negotiate that event.

He answered some other questions and closed with this:
Finally, as far as what I would do, and what I can advise you to do, I know Dr. Hanley quite well and have a tremendous amount of respect for his sound judgment and his surgical abilities. He is considered one of the premier congenital heart surgeons in the world for a reason. I don’t know either Dr. Azakie or Dr. Raff, and therefore cannot comment on their qualifications either in a positive or negative manner. So if I had to make this decision for my own child I would choose Dr. Hanley, and would trust his judgment as far as what operation would be best for my child.

I am so thankful to Dr. Mainwaring for taking the time to really consider our situation and write such caring words to us. Especially since it really helped us come to a conclusion. After we read this email, Dan said he thinks we should go to Stanford. The fact that we keep hearing from cardiologists and surgeons with 30+ years in this field that they would trust Dr. Hanley with their own children means a lot to me. So tomorrow I am going to call Stanford and see about scheduling surgery. I feel a tremendous burden has been lifted and I am looking forward to moving closer toward surgery.

Thursday, March 6, 2008

The park and other stuff

This is pretty much how our morning went. Drew had preschool this morning (it was bunny day) and I took Ava to the park to play with her friends. What a fun mom, right? Well for some reason Ava was not having fun. She did enjoy the swings, but the rest of the time every word out of her mouth was no, and she whined, cried and was generally a disaster the rest of the morning. At least we were outside in the nice weather!

Drew had an appointment at the Spine Center this afternoon. It was just to evaluate the inserts he has for his flat feet. The doctor said his inserts still fit, he has room to grow and he definitely needs them. He said Drew pronates quite a bit more than a typical four year old and if he doesn't look a lot better in six to eight months we might have to do something more serious. He didn't say what that might be and I didn't ask, because I don't really want to know. We'll cross that bridge if and when we come to it.

There has been no news on the surgery front. I haven't heard back from Dr. Hanley, although the cardiologist said we probably wouldn't. He said from his 30 years of experience working with surgeons that they don't like to "compete" with each other and Dr. Hanley probably feels like he already gave us his opinion and wouldn't like to comment on what Dr. Azakie said. So we're still thinking.

Here's a couple of other pictures from the park this morning. She did have some fun.

Tuesday, March 4, 2008


I was at my Mom Connection group today and we were asked to pray that God would give us the strength to resist becoming anxious about our children and the discipline to not demand everything about our child's life be "our way." I felt like I had to practically stand up and shout "I am really, REALLY anxious about my child's life right now. Really." I know that Drew's life is in God's hands and that whatever happens will happen according to God's purpose for our lives. But what I want about Drew's life to be "my way" is just for him to be ok. And I am feeling incredibly overwhelmed with making this most recent decision.

Some news: when I called our cardiologist to tell him what Dr. Azakie said about the possibility of a complete repair he wasn't as excited as me. He said that we'd already talked to two great surgeons who didn't think that was the best option. He reiterated that when we asked him what he would do he said he would go to Stanford and that hasn't changed. He said we needed to trust the person doing the surgery and that he trusted Dr. Raff and he trusted Dr. Hanley. And that's all he said. From what it sounds like, he might as well have said "and I don't trust Dr. Azakie." The hard part is, I don't know why. And I have a feeling he can't tell me why. He said we need to be comfortable wherever we go, and the truth is that there is nothing comfortable about this. I am definitely uncomfortable.

Dan and I talked it over and while I am leaning toward Stanford, he is leaning toward UCSF. His reasoning is that he thinks there must be a benefit to having the same surgeon who has already seen and touched Drew's heart do the next surgery. He thinks that maybe the reason the other surgeons wouldn't have done a Norwood and a Glenn is that maybe Dr. Azakie was hoping to get to this place (of a possible repair) the whole time. And we are both lured by the possibility of Drew having a (relatively) normal heart and no more heart surgeries.

But this is where my fear really comes in. The other surgeons said that a repair is a much more complicated (and therefore risky) surgery. Are we will to take a greater risk to have a better long-term outcome? All I really want is for my son to come home with me after surgery. If we try to do something great and we end up losing him I won't be able to live with that. And so that is where we are right now. Anxious. About our child.

Our prayer verse for today's mom connection was very appropriate and is what I will be praying in the coming days:

Trust in the Lord with all your heart and lean not on your own understanding: in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6

The things kids say

In the midst of all this craziness that is going on with trying to make a decision about which hospital and which doctor should do Drew's next surgery, I thought I'd share something a little more light-hearted.

I have been trying to teach Drew to be kind to others, but especially to his sister. Today the kids were outside and Ava was riding Drew's bike, which he was NOT happy about. When he was trying to pull her off of it, I reminded him to be kind and let her finish her turn. He said "But I don't want to be kind! I want to have a bad attitude!" I had to crack up at that. Sometimes I want to have a bad attitude too!