MiX-mAtCh DaY

From head to toe! The girls love spirit days!

Post-op

Well, today was Robert's post-op and of course he is doing great and the doctor agreed with us about the catheters. He said we can always see the urologist later if we start to feel there is a problem, but I don't think there will be.

When we left the hospital I was so tired and a little disappointed to be leaving with the catheters that I didn't experience the sense of relief that I was expecting, but it came flooding in today. Right now I am feeling overwhelmed with a deep since of gratitude. We have really felt the power of prayers and fasting throughout this experience, and the Lord's tender mercies have been abundant. I could go on all day about them, but here are just a few;

-The freeway closing after we were already down the hill on the morning of his surgery (and then being open again for David to return home)
-Surgery going shorter than expected and the calmness that we experienced while we were waiting.
-School being cancelled on Tuesday for David
-Jet, Max, and Minkie the therapy dogs
-loving grandparents

And the list could go on and on. And here is a biggy . . . Robert has slept through the night three days in a row!!!! You can't imagine what a big deal that is. I cannot remember the last time he slept though the night it has been so long. He was always waking up in pain before his surgery. I am so, so, so (is that too many so's? I think not) grateful for modern medicine and for a wonderful pediatrician who listened to me even though "99% of the time it's nothing".

I love that little boy more than I could ever express and watching him suffer was sometimes more than I could bear. My heart goes out to anyone who has to watch there child in pain. I know that ours was a little thing compared to many others and I pray that anyone who's child is hurting will feel the love of their Savior to help get them through.

Thank you all for your thoughts and prayers!

Please Vote

I just found out that Colgate is donating a fun center to the 3 hospitals that receive the most votes. If you have a second vote for Childrens Hospital LA (where Robert had his surgery). You can vote every 24 hours until Feb. 27th. VOTE HERE It only takes a second!


Thanks

Naps and Bee Stings

A NAP

Today before Robert's nap I told him if he slept good he could play Starfall on the computer.

Here is the conversation we had when he woke up.

Robert: Mommy, did I sleep good?

Me: You slept awesome!

R: Mo-ommy, Did I sleep good?

M: yes, Robert, you slept awesome.

R: (Now with tears in his eyes) but did I sleep good?

M: Yes, you slept good.

R: YEAH!!!!!

A BEE STING

At the end of FHE William started screaming. It took us a couple minutes before we realized he had picked up a dead bee and got stung!!! Poor baby! And how in the world did a dead bee get in our family room?!?

No More Cats

Yesterday we used our parental rights and said, "no more catheters!" After doing it a couple times at home and having good results with his urine output we really feel it is unnecessary to put him through such an unpleasant thing anymore. He has a follow up with the neurosurgeon on Wednesday and hopefully he will be in agreement with us, if not we will start again. A months supply is still being shipped to us, so if you are ever in need...!!! (-:

He is doing amazing! Running around, jumping, climbing as if he never had surgery on his back. (Basically making momma a nervous wreck!) The only time you know he is still in a little pain is when he has to have his diaper changed and when he is moaning and groaning throughout the night. His incision looks great, but his back is still fairly swollen.

Here is picture of him before we knew of any of the trials that lay ahead of him. He has always been such a happy little boy!

We are so proud of him. He has been so tough and brave throughout all of this! We love you little man!

Thank You Mom and Dad

My parents left this morning and we were sad to see them go. Not only did they do an amazing job taking care of the kids, but they also left us a clean house, new bathroom faucets, and a new light kit on our entry way ceiling fan!!! Aren't they wonderful!

LOVE ON 4 PAWS

Here are the dogs that visited Robert. We were so impressed with them and there trainers! What a wonderful program! Here is there website if you are interested in more.

Minkie

Max

Jet-He was our favorite. He came the first day and was SO calm and obedient. He climbed on the bed and scooted right up to Robert without causing any extra movement that may have hurt him. Then he just lay there and let Robert pet him over and over. It was wonderful!

This is an organization worth donating to, if you ask me! I know we will!

Home at Last!

We got home last night around 8:30. We had to stop once to clean up a whole lot of puke, but Robert is feeling pretty good today. He's not too happy about the whole catheter thing and neither are we, but we're hoping to not have to do it for very long. His incision is about an inch and a half and looks great. There isn't even any stitches on the outside. You may notice that his hands look bandaged in the pictures, but it is just washcloths taped on him to cover up the IV's.

Thanks to Grandma and Grandpa for holding down the fort while we were gone! They are the best!


A couple hours after surgery this light toy was his best friend.

A visit from Jet really cheered him up!

Listening to Anna's MP3 player.
All his animals. Notice the glasses on the dog in the middle!
A ride in a wagon and a trip to the playroom! It was so nice when he was able to sit up and then a little later get out of bed
Mommy and Robert in the playroom.
A visit from Max.
A visit form Minkie.
Anna and Alahna were excited to have him back home!

6 p.m. - On their way HOME!

They are on the road headed home. They will be doing the catheter at home, but probably just once a day in the morning. This should be my last update.

4 p.m. update - Day 3

Robert has peed two more times, one that failed the test and one that was much better. Kiley and David have been trained on how to do the catheter, and they are waiting for the urologist to come and decide whether or not they need to do the catheter at home. Hopefully before long they will call and say they are on their way home.

Robert hates his oral pain medication, and they got behind on it earlier today - which caused him to be in quite a bit of pain before they got the medicine in him and working again.

This has turned into a long day for Kiley and David - they are worn out.

Progress - 11:00 a.m. on Day 3

They took Robert's catheter out, and he was not allowed to wear a diaper because they needed to know as soon as he started to pee. Then he went to the playroom, and played, and or course, peed in the playroom. When the put the catheter back in, there were only 2 cc's left. If he can do that one more time, he can come home without worrying about doing a catheter at home.

Start of Day 3

Robert and Kiley both slept much better last night. Robert is more alert and aware of what is going on, and is also happier this morning. He has had more pain, which they are managing. One of his IVs started hurting him, and they switched it to the other hand.

When Kiley called, Robert was sitting up. They had him sit up to eat his breakfast. They were going to be coming back soon to remove his catheter. When he pees, they will put the catheter back on to see if he was able to drain his bladder on his own. If he can do this twice, he will be good to come home. If he is not draining the bladder by himself, he can still come home, but Mommy will have to be trained to put the catheter on to finish draining his bladder at home. Probably the only thing that would keep him from coming home today would be if they don't have all the equipment for this to send home with them, or the right people aren't available to train Kiley on the procedure. This should not be a problem, so we are pretty confidant that he will be home today!

Normal checkout is 11:00 a.m., but it may take them longer than that to do everything that needs done before they release him.

End of Day 2

I spent about 7 hours with Robert and Kiley today. They are both doing well. Kiley is a little tired, but holding up well. She was able to shower and take a few breaks while I was there. Robert is under the influence of his medicine, which helps keep him content to lie still. He had a good day, although he didn't eat very well today (yesterday he ate a lot, but he wasn't hungry today). The highlight of his day was when he was visited by a therapy dog - a large (standard) poodle named Jett. Jett layed by him in his bed and he loved it. He cried a little when Jett had to leave. Kiley took several pictures, so she will post one later.

The plan for tomorrow - David will go down early and the doctors will see Robert at around 7 a.m. They expect to send him home tomorrow, but it is not 100%. Probably the next update will be from Kiley after Robert is home.

Day 2

There has been little excitement today. Robert is still on his back and Kiley is really tired. Yesterday we left for the hospital at 4 am and the roads were clear. By 8 am a huge storm moved in and it shut the I-15 freeway down for three hours. By night time the roads were clear and I was able to get home ok. With the storm school was closed for me and so I could go back to the hospital. I left for the hospital at 7 am. However the freeway was closed again due to poor driving conditions. Since I needed to be back to teach at vvc this evening (my night time job). We decided that Grandpa would go down instead to help Kiley and as a bonus he could use his new toy (GPS). Grandpa made it to the hospital no problem and it has been really quiet here at the house. The playroom was flooded again imagine that. Without Robert it hasn't been much of a loss. Tommorrow morning we will find out how Robert is doing when they finally get him off his back and let him walk around. Sorry for the lack of info. There just isn't much to share. As they say no news is good news.

David

Robert is in his hospital room

Robert is in his room and is doing okay. Kiley said he is not very happy. He is tired, hungry, and cranky from the anesthesia. Contrary to what Kiley expected, he still has 2 IVs, one in each arm, and he doesn't like them. He is not in pain, but he was very itchy, so they gave him some Benadryl. Kiley said it is going to be a chore to keep him flat for 2 days. He is allowed to roll on his side, stomach, and back, but cannot sit at all. Kiley will have to stay right with him to keep him from trying to sit up. She is going to be worn out!

Back at home, Grandma and I are about to take the girls and William to Chucky Cheese's for lunch and a couple of hours of playing. Whoopee!

Out of Surgery

Kiley just called and said Robert is out of Surgery. It took less than 1 1/2 hours - they were expecting 2 hours or more. The doctor told Kiley and David that it went very well. They didn't need any extra blood. There was a lot of tension, and when they cut it, all the tension released. They put morphine in the nerves and tissue around it, so when Robert wakes up he should not be in any pain from the surgery. They will also remove the IV before he wakes up. The doctor just gave them a quick update and went back in, so more details should come a little later.

Surgery started on schedule

Kiley called at about 7:45 and said they were just getting started. (Surgery was scheduled to start at 7:30 -- they have been at the hospital since around 5:45 this morning.) No real news yet, but Kiley said they put him to sleep with a mask before putting in the IV, so Robert didn't have to deal with them putting the IV in.

We were concerned that the girls would be stressed out about Robert this morning, and that phase is probably coming, but so far it hasn't been a problem. They have watched some cartoons and are getting ready for breakfast now.

D-day

Since our minds will be elsewhere tomorrow we are remembering Davie today.

It was five years ago that we heard the word anencephaly for the first time. (Anencephaly is a severe neural tube defect.) When we first learned that Davie had no chance of living more than a few hours after birth we grieved, but now we rejoice. We rejoice at the privilege we had to aid him in his eternal progression and to be his parents. He changed our lives forever and we are grateful to have him as a part of our eternal family.

"A MOMENT IN OUR ARMS - FORVER IN OUR HEARTS"

pre-op

Yesterday was Robert's pre-op at the hospital. He did really well and especially loved the fire truck hospital bed. They had to draw some blood and we were trying to psych him up for the event and he was going along with it pretty well until we walked into the lab. Suddenly he started changing his mind and when he saw the needle he started saying , "I don't want to do this." over and over. But he was such a brave little boy and stuck his arm out and didn't fight it at all. He shed some tears, but never tried to pull away or anything. After he was done Daddy went to donate blood for the surgery and we got some ice cream and explored the hospital.

He has had a cold and we were worried about them rescheduling so were relieved to hear that all is going forward as planned. We just have to do breathing treatments every 4 hours to make sure his lungs are good and open until then. The Fire Truck Bed and his new doggy from Grandma Force.

One of the play areas in the hospital

Getting Ready

With less than a week to go until Robert's surgery we are trying to prepare him for the event. Today we pulled out a new Dr.'s kit and have found some books to read. He is mostly excited because the girls have loaned him their favorite stuffed animals and Anna is even letting him use her mp3 player. He is also looking forward to ice cream on Friday after his pre-op.

Mommy, on the other hand, is not feeling so excited. I have been very relaxed about things until about last night when the stress of it all hit me. Unfortunately for the rest of the family I tend to get a little cranky when I am stressed. It will all be over soon enough and I can't help but think of the families that are watching their children suffer from cancer or other serious problems.

Checking in

I received an assignment from Kiley to "check in" on her weekend getaway. Miracle--the Petersen home is still standing. It has rained almost constantly since Kiley left. This means no playroom, no backyard, and no park. Translation we have watched ALOT of television but Mommy isn't here to curb our addiction. (thank goodness) At least it was mostly Discovery Channel Fun. (BYU channel on Sunday of course) Editors note: Man vs Wild does have occasional nudity-- who knew. Thank goodness for DVR . Both Robert and William have colds so we didn't make it to church. Translation--We have been wearing the same pajamas since Friday. (slight exaggeration) We did go to Panda Express on Saturday and the girls are getting used to ice cream and movies after the boys are in bed. No nightmares so far!!!! I think those are the highlights. Just to relieve some fears. Everyone has gotten three (mostly) healthy meals a day. All medicine has been delivered in a timely manner. 1 load of laundry was washed, folded and put away. The dishes have been done at the end of each day. Robert has been patched daily and Anna has done math facts almost daily. No trips to the doctor or hospital (so far). All children have had at least one bath or shower. Not once have the boys been forced to sit in stinky yuck while I gathered up the nerve to face the nastiness. Most importantly each of the children is still talking to me and hoping Mommy never comes home because we really love tv, ice cream, and soda pop. HAHAHA

David

Weekend Getaway!

For Christmas David surprised me (and by "me" I mean only me!) with a plane ticket to SLC to see my family. I have been excited to go, but also a little nervous. In the 9 plus years since we have had children I have never traveled by myself. I have gone on trips with David, but not completely solo. What in the world will I do with no diapers to change or crying kids to console and no hubbie to talk to. But last night when both Robert and William were crying and the girls were in hyper drive I suddenly started to feel very excited, even giddy! I think I'm going to enjoy myself very much this weekend! Thank you David!

a prayer and a wish come true

Last week Anna stayed home from school twice and Lahna was green with envy. Ever since then she has been trying to get out of school for various reasons. Luckily she doesn't have the acting talents of Anna and William. But today she has a legit excuse, pinkeye! And she couldn't be happier!

This morning it was Robert's turn to say the prayer. This is how it went:

"Dear Heavenly Father, please bless everything. Jesus Christ, Amen."

I gave him some suggestions to expand his prayer and asked him to try again. His second prayer went like this:

"Dear Heavenly Father, thank you for everything and bless everything. Jesus Christ, Amen"

When I tried to help him be a little more specific, he looked at me and said, "but I said everything."

Lucky Winner

Anna won some easy bake oven stuff in a raffle at school! She was very excited!!!

New Haircuts

Faker

Apparently William is such an amazing actor that some of you missed that he was never really sleeping. It was all an act for the camera. Look out Hollywood. He is an accomplished pouter as well. You should hear his fake cry. HA HA!!!!!!!