Mason

With so much attention focused on Benjamin for the last few weeks, it occurs to Wade and I that it might actually be harder to be the kid NOT having surgery.

This is one of my three that DID NOT have surgery four weeks ago -- Mason. And perhaps, the one that has been affected most by his brother's surgery because these two are inseparable -- talking each night until one falls asleep, and waking each morning to resume the conversation right away; they are fierce video-game competitors; challenge each other in their reading; and of course, team up against their (beloved!) triplet sister at will. He has missed all of that as Benjamin just wasn't his self for the first three weeks, and hasn't returned to their room yet as he needs a bigger bed right now.

So, this boy, this wonderful Mason, has moved on to an inflatable mattress in Uncle Lenny's room to sleep near Benjamin -- and to allow Mom to get a little sleep in her own bed (at least a couple nights a week -- B prefers me in there too!). So while this does give them some chatter time (which they enjoy), it also means that Mason gets very little sleep on the nights Mommy isn't there...because he is running back and forth to my room to get me each time Benjamin complains of pain.

So forgive me for bragging, but Mason has not complained once. He just does it and by so doing, takes care of not only his brother, but his Mommy as well!

"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control..." (Galatians 5:22-23)

"Likewise every good tree bears good fruit...thus by their fruit you will recognize them." (Matthew 7:17a & 20)

Oh, Mason, the fruit we are seeing in your life is such a blessing -- not just to your family, but I know that God is rejoicing in heaven in the growth so evident in your young life! May you continue to grow in God and bear the fruit that growth will reap! I love you.

Morning by morning...

We are definitely on the roller-coaster of recovery around here. There have been several moments where I think, "Wow, we are back to normal almost." And then there are moments where I am worried this may never end -- moments where my boy's pain makes him too restless to sleep, and extremely emotional. And sometimes, dear ones, we experience both emotions in the same day, same hour even.

Today, is a good day. Benjamin slept fairly well last night. He re-joined his brother and sister in going to Band this morning (sitting tall in his power chair) and then afterwards felt energetic enough to do a little shopping with his stash of surgery-monies (Such love he has felt with cards, calls and a little cash even!).

Now he is back in his knee-immobilizers, abductor pillow and reclining (non-power) chair....but he has a PlayStation controller in his hands and so, life is good!

Even in his most-emotional moments, he is an amazing kid. After a particularly restless night over the weekend (read: we were awake every 45 minutes as I tried to reposition him, or ease the discomfort in some way.), he looked at me and told me he was certain I am an angel...now, my friends, there is not much I wouldn't do for him anyway, but now that he has deemed me angelic...well, he can disturb my sleep any time!

But exhausted, weary of his pain, and anxious to have my family back to normal...I have had my moments this week. Faithfully, God brought this passage to mind:

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness!" Lamentations 3: 22-23

So today, I am thankful for God's fresh mercies each day -- and for four children that never cease to amaze me!

Almost three weeks out...

Benjamin had his post-surgical appointment today. As much as he loves Dr. Lee Segal, it wasn't all fun and games. The stitches had to be removed -- from all eight incisions -- and he had to have x-rays taken of his legs.

The good news: He was a trooper. There were some tears but I really think those were more related to his absolute exhaustion with this whole thing, then from pain.

The great news: His hips look great! They are healing beautifully and we can start trying to incorporate some of his normal activities tomorrow and in the coming days -- little by little!

Your prayers have been felt and we feel so blessed by your love and by God's faithful care. Thank you!

Trying to get a self-portrait of me and my strong boy...his little sister wanted in on the fun!

Just a reminder...

That though life sometimes gives us rain -- whether it be a blessed son's surgery, or whatever your personal shower -- we should all put on our pink rain boots and dance, a sure-fire way to find the blessing hiding in the clouds!

Remembering to teach...

I realized something this week and it was a hard lesson.

Sweet Cate wanted my attention. And she wanted it right then! I was in the middle of thanking a sweet friend who had brought dinner to us and looked at Cate and told her she was being naughty interrupting Mommy while I talked. My three-year-old was embarrassed, yelled at me that she couldn't talk about this right now and stormed to her room.

My friend giggled. But my heart had a moment -- I began to wonder if I had ever TAUGHT this three-year-old how to appropriately get Mommy's attention when I am talking to another grown-up. I know I taught her big kids. I remember working on that. Was it possible that I had completely neglected this with my angel baby?

Uh. Yea. It's not only possible, it's probable.

As the fourth child. Almost nine years younger. She gets the benefit of lots of adoration. Lots of attention. An eager audience for all of her performances. And a mommy who assumes she has taught her more than perhaps she actually has.

After my friend left, I went to see Cate -- still pouting in her room. I told her she had to learn the appropriate (Cate likes fancy words!) way to get Mommy's attention. So we went and got Uncle Lenny and began to act-out two grown-ups talking and what Cate should do. She loved our little drama! She had fun and giggled and thought it was all so much fun. And guess what? The rest of the week, she has remembered.

Oh, don't think she gets it right every time...but one glance from me (in mid-conversation) and she says, "Oh, I mean, excuse me, Mommy" and then waits for me to find a stopping point where I can give her my attention. (And one look from her and I remember that it is my job to reinforce her appropriate behavior by NOT making her wait indefinitely for a turn!)

Now, I'm left wondering what else I have assumed she knows. So if you're looking for me, I'll be poring over my parenting books, trying to ensure I've covered all the basics!

"Train a child in the way he should go, and when he is old he will not turn from it." Proverbs 22:6

Oh, the blessing of Mommy hood!

P.S.
Benjamin continues to get stronger every day! He has been able to cut his daytime pain meds down to only Motrin! Please keep praying!!

Not back to school...

School started yesterday in our neighborhood. Even when I came home from the gym (at too-early-thirty), the teenagers were standing at the curb waiting on the bus for the high school. I knew in houses all along our street first-day photos were being taken and backpacks loaded.

And for the first August ever...we were not among the ones getting lunches packed and children loaded. Our first full home school year won't kick off until after Labor Day (giving Benjamin some needed-healing time!) so I had some time to think about the day!

I couldn't ignore the fact that THIS year, I am not stressing about educating everyone who comes into contact with my boys; stressing about making sure all their needs are being met; stressing about the logistics of moving from room to room without Mason being trampled; just stressing period.

So, while I know stress will come as we begin work...do you mind if I relish the joy and excitement of starting our first year together at home?! I am so excited!! The curriculum makes me smile -- and I think we are going to have an outstanding year!!

Ah, and the blessing of a few more weeks of summer break...that one surely shouldn't be forgotten!!

Celebrating Benjamin as he recovers...getting everyone and a dog to look at the camera simultaneously...not so easy!

Ask and you will receive...

There are things we will do when it is for our children that we would not do for anyone else in the world. Right? My kids can ask/require anything of me -- anything -- and if it is within my power, and in their best interests, I will do my best to accomplish it.

Lifting Benjamin in his leg splints and abductor pillow (picture legs spread out and unable to bend), with multiple incisions on each was daunting for me. Daunting is probably putting it mildly. I was scared to death the first time we got him up in the hospital. And fear and strength are complete opposites. Complete. I couldn't do it. I had to have help the first two times. I was furious with myself. And (did I say it already?) scared to death. Because I knew I had to be able to lift him. The third time was much better -- first of all, his epidural was gone, so I knew I wasn't hurting THAT, and I had prayed for stubborn strength. I picked up this boy I love so and gently put him in his wheelchair all by myself! I knew I could (I knew I could, I knew I could...)

Of course, Grammie (my mom) is the same way with her grands. So when Claire called and requested some White Lily flour, Grammie was determined to oblige! Now this request might seem strange to some -- but my girl loves to cook. She loves it. At her age, I was not interested in the kitchen at all. I think I was convinced that to be anything I wanted to be (the mantra for girls growing up in the 1970s.) meant I shouldn't be in the kitchen. Thank goodness for a new era -- an era where my daughters KNOW they can do anything they want to do BUT realize one of life's greatest gifts is getting to be wife and mommy.

OK, I digress. Claire loves to try new recipes. She reads cookbooks for pleasure. She adapts and changes and adds to recipes to try new things -- to amazing success! So when she read in one of her cookbooks that White Lily Flour is THE choice of southern cooks, she was determined to try it. However, we are living in the Southwest....not the SOUTH...and we have yet to find any White Lily Flour at any of our local stores. So what did this girl do? She called her Grams.

And Grammie...well, she packed two bags of White Lily Flour in her suitcase (between the boxes of grits...) and headed to the airport! I am certain that it takes a southern-speaking grandmother who also has grits packed in her suitcase to get away with carrying flour on an airplane. But she did it. And my girls could not have been any happier with a gift!

So, Claire (with Cate's help, of course) has made cookies, banana bread, lemon squares and some of the most amazing brownies you have ever tasted! I'm not sure how much longer this shipment of White Lily will last -- but we may have to diet afterward!

Girls cooking special treats for Benjamin's final meal before his surgery!

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil know how to give good gifts to our children, how much more will our Father in heaven give good gifts to those who ask him!" Luke 7: 7-11

Aren't we blessed to have a Father even more willing to meet our needs than a mommy caring for her son, or a grandmother for her grandchildren? Thank you for asking our heavenly Father to make Benjamin's surgery and recovery go so smoothly! I know his daily improvement is a direct result of loved ones asking -- and a Father who answers!!

New normal

Today was better than yesterday. Benjamin's pain has been kept at bay. Some of the medication definitely has more of a drowsy effect on him -- and so we are learning where in his day he should nap, and when he is eager to be with the family, playing video games, seeing visitors and seeming almost (almost) himself.

He looked at me tonight and told me I was right -- he is getting better every day. Praise the Lord!! Our road isn't short, but as long as he is pain free, I know we can handle the rest of the rehab.

Thank you for your continued prayers -- we are feeling the blessing of them in a mighty way!!

A matter of perspective

Life is full of matters of perspective -- and if our sense of perspective gets distorted everything gets out of balance.

All the rooms in the hospital are doubles -- there just are not enough beds to meet the needs of all the kids in the Valley! (The new hospital will have ALL private rooms...that can't happen soon enough in my opinion, but I hope to never need one of them!) So, our side of the double room looked so small when Benjamin was first rolled in. Basically, we had room for his bed and a little chair beside him. No walking space at all. I wasn't sure how the rest of the family was going to visit.

So, you'll imagine my relief when the nurse came in and told us they were going to keep the other side empty for us. And even rolled the bed that was in there out and brought in a small sofa. We had room for the kids to visit their brother (very important as they were so worried!)!

We enjoyed that luxury on Saturday and Sunday morning....before the crisis hit and our beautiful boy was rushed down the hall to the intensive care unit. Now, my perspective was completely different and I could not even enjoy the large room with the sleeping sofa in the PICU because I knew that all that space was necessary for the team of people to get around Benjamin at a moment's notice in the event of another crisis. Suddenly, the smaller space seemed so much more desired.

After one utterly sleepless night in the PICU, and one where we both got a decent amount of rest, Benjamin was moved back to the regular rooms...and back to a double -- without the special treatment status of the whole thing to ourselves. Now, the only privacy we had was the curtain surrounding Benjamin's bed and my sleep chair. But I was thankful...that little space meant they were not expecting to need a lot of people around him. Praise the Lord.

Our perspective was further adjusted yesterday when we arrived home. I am so glad to see all my kids. So glad to be in our home. So glad to see my boy interact with his siblings.

But Mason thought Benjamin would be back to normal -- happy to see him and ready to talk and play. His perspective had to be altered -- thankfully today Mason seems to be enjoying just having him home.

And then Wade just called and asked how Benjamin was doing today...when I said, "Great!" he questioned me, "really?" And I had to explain that compared to yesterday when he was in so much pain, he IS great...and compared to Sunday, when he scared us all to death, he is absolutely FANTASTIC! I'll take it!

The bottom line -- life is going to constantly throw us curves, scares and even gifts that change our perspective of our life. But by keeping Jesus as our constant -- our measuring stick, the rod against we hold up all crises and blessings, we can discern what is true and certain!

Hebrews 12:2a reminds us "Let us fix our eyes on Jesus, the author and perfecter of our faith..."

Only then can we see all life's blessings clearly!

And speaking of blessings...it doesn't take much to discern this is one...my boy enjoying his baby sister AT HOME!!

From the brown house on the left...

We are HOME!!! Oh, I have my own computer, access to food, water, and beds. A real bed! (and other delicate unmentionables that this mommy sleeping in a chair beside her son had to hike down the hall for in the hospital!)

And best of all, my sweet boy is home. Free of all sundry of wires, tubes and monitors.

Thank you for your prayers. Thank you doesn't even come close to the gratitude we feel for your continued prayer cover.

While we are excited to be here -- we still have prayer needs. Benjamin will be on this road to recovery for a long time -- will you keep praying? We have a schedule for pain medication and hopefully that will keep it under control. But moving him is causing some discomfort and we need him to spend time out of bed for his continued lung improvement.

Now, I've re-read yesterday's blog and am wondering if ya'll think I was the one on pain medication? I have several excuses....first, I don't think very coherently without sleep and I've had very little sleep this week; second, my blogging efforts this week have been courtesy of Wade's work laptop and so only possible for the briefest of times and last night I was rushed (I certainly don't think clearly when I am rushed!)...so should I finish the story?!

I understand there has been lots of speculation about whether or not the REAL John Travolta called....and how that happened....

First, YES, it was really John Travolta (really!) The connection is complicated...Wade's partner, Dr. White recently met John through a mutual friend. Benjamin was questioning him about the meeting while waiting to go into surgery on Friday (Remember my movie-loving guy...and Hairspray was on the TV at the time!). So later in the weekend, when Dr. White spoke with his friend, he mentioned Benjamin and the friend arranged to make Benjamin's day with the surprise phone call!

Isn't that just cool?

Ya'll need to know though, that while the surprise celebrity encounter was so much fun, we also treasured our visits from dear friends here, cards, cookies and text messages! Benjamin especially loved reading the text messages!

Well, the three-year-old is needing some serious Mommy-time, Benjamin does too, and Claire and Mason are looking like they might like some as well. Ah, the blessing of being home.

From Room 139

Praise the Lord, we are out of the Intensive Care Unit. (Although, honestly, I loved our night nurse up there and both Benjamin and I would have been content to stay there until we go home...guess that wasn't an option.)

Benjamin is oxygen-free tonight. He is however, also epidural-free so for the first time since surgery he can feel his legs...and that frankly, hurts.

Will you pray for him tonight as he gets acclimated to how his "new" legs, this soon post-surgery feel? Mommy has lifted him in and out of a wheelchair today to give him a walk around the hospital. He tolerated that...but couldn't really enjoy it because of the leg spasms and pain.

I have to share a funny story that he DID enjoy, however....

Yesterday, we were in our room in the PICU when the phone rang. Only Uncle Talley had called on the hosptial line before as everyone had used our cellphones, so I answered warily (knowing Talley was at work). I received a "Is Ben there?"

Well, again, I was wary about this...everyone who KNOWS Benjamin knows he does not like to be called "Ben." So, hesitantly, I said, "Yes." Only to receive this:

"Well, this is John Travolta and I was hoping to talk to him."

"Oh, well, sure, I think he'd love to talk to you."

And promptly handed the phone to Benjamin...who never once showed any sign of being star-struck...instead he began to ask amazingly astute questions of this mega-star. They had a lengthy conversation about upcoming movies, current projects and even future projects that Benjamin thinks he should consider.

And then I heard this:

"I have really enjoyed talking with you, Mr. Travolta. Thank you for calling me."

And my sweet boy smiled -- from pure enjoyment! (Again, if you know my boy, you know that he loves watching movies, talking about movies and planning future movies! This was a call he got excited about!)

And with that -- we are ready to go home! Benjamin feels mixed -- he wants to be home, but is also anxious to NOT repeat Sunday's episode. Prayerfully, tonight he will begin to feel more comfortable and relax and really be ready to go tomorrow.

Please continue to pray. We still have a long road to recovery -- and we know we couldn't do it without your prayers! Have I said thank you?! We are so grateful -- grateful for your prayers and your visits and your text messages!

Update...

Carol send me a text message earlier: she said Benjamin was back in a private room and resting, after a busy morning. They also had a good night, the oxygen is off now and the epidural is out! Chest X-rays look better. Please Continue to pray!

From the Peds Intensive Care...

Oh, I don't want to be here. Not because the ICU isn't beautiful (it is). Not because the nurses aren't amazing (they are!). Not even because there is a big glass wall with lots of people looking in (I like people). But because this means my sweet boy has taken a step back. A step I would not wish on anyone.

Saturday was about getting Benjamin's pain under control. And the doctors were able to do that with great success. Wade describes Saturday as an A+ day.

Saturday night went well at first...both Benjamin and I were able to sleep. Until 4 am, anyway.

At 4, the Respiratory Therapist came in -- see, the surgery was long, and Benjamin is a non-ambulator (he doesn't walk), so Respiratory gets involved to ensure he is keeping his lungs clear. He got very stressed during these exercises and ended up with an oxygen mask on his face blowing air to help him breathe easier. He finally went back to sleep around 6 am. Wade and I have discussed this over and over (and over) and really don't know why he got so agitated. My best guess is that the exercises were stirring up some congestion that he was then having a hard time coughing up.

Because we thought that incident was stress-related...we proceeded with the post-surgical plan for yesterday -- get him up and in a wheelchair, more breathing exercises and try to eat.

He kept getting agitated...saying he wasn't getting enough air. We kept assuring him the mask was blowing...and so the day went. Until about 3 p.m. yesterday when Benjamin was sleeping and all of a sudden his breathing changed and became extremely labored. His eyes flew open with the utmost panic and his oxygen levels began dropping.

We tried to calm him down, urging him to take deep breathes. Then Wade stepped out of the room. I immediately began to hear a page going out over all the loud speakers but really didn't make the connection until people began running into Benjamin's room.

The nurse had called a CAT TEAM alert....(Critical Assessment Team)...as the first two people came running in, Wade whispered to me, "It's a pre-code." I have walked this medical road with Wade from the beginning, so I know what "CODE" means....it isn't good. My heart began to panic, my legs to tremble and I just wanted to shout to everyone to get out. But then looking at my blue-lipped boy, I knew we needed them. Benjamin needed them.

Within minutes, they were giving him a breathing treatment to stabilize him, taking a chest x-ray and unplugging everything and starting to move...as we ran down the hall toward the PICU, I was too scared to even formulate prayers....but knew even then that scripture assures that in moments like that, the Holy Spirit will interpret our groans to the Father! I was counting on it.

Within minutes of getting to the PICU, the team had him breathing more comfortably with a nasal oxygen. It was evident to all around us that he had probably been starving for oxygen all day. For the first time, he was breathing easily and began to rest.

I won't say it was a restful night. Wade and I are shaken to our very core. We took turns napping on the little sofa in Benjamin's ICU room while the other one sat by watching him breathe. He has a new myriad of monitors....and though they scare me to death, I am very thankful for them.

His chest x-ray this morning looks better. But he still has a big hill to climb....still too much fluid there, and diminished breathing capacity.

He did, however, eat this morning for the first time. My good boy wanted a biscuit and Peaches! He is resting now and hopefully will for the better part of today.

We had hoped to be home today or tomorrow. That is obviously not going to happen. Will you pray that we get there Wednesday? My mother was scheduled to leave on Wed....will you pray we can make arrangements for her to stay longer?

And will you please continue lifting up this sweet boy -- they are decreasing his pain meds today. We DO need to start lowering those but don't want him "stressed" from pain when we need him breathing. Pray for wisdom for his entire team (so many people involved now that I can't even think of all their names. I am tired.)

Thank you, dear ones. We all felt better last night once we were able to send out some prayer alerts. Your faithfulness to pray for us is more than a blessing. Thank you.

Update!

Hello Friends, 

Tonight hasn't been the best night. Benjamin was placed back in the PICU. He is doing fine now. However, he had some breathing problems earlier. He is doing fine now and I received a text message from Carol saying that he was a sleep with oxygen and stable. She asked if you would continue praying. 

If you would at this moment just say a prayer for Benjamin, Carol, Wade, and all the doctors and nurses that are overseeing Benjamin. 

Benjamin Update.

Hello Friends,

Benjamin was able to get some sleep last night. He did have some breathing problems. He seems better today. Also, today he will get into a wheelchair, so please pray for him. 

From Room 135...

Benjamin is resting. Finally. Around 2 a.m. he began to become much more awake...and to feel much worse. The pain meds they are giving him through an epidural has the possible side-effect of making you feel itchy all over...and it did! He was convinced there were "spots" on his tummy. I was able to assure him there were not and by rubbing his little belly, alleviate the discomfort enough to help him sleep. He also began asking why they operated more on his left side, than his right. I assured him they did the same thing to both and he told me his left hurt a lot more! This was extremely telling to the doctors because it indicated that the epidural probably wasn't giving him enough pain control.

After playing with this med, changing that med, and readjusting the rate on yet another one....they seem to have him resting easy. Praise God!

Will you pray for continued pain control? Benjamin doesn't even verbalize pain until it is already a 9 on a scale of 1 to 10. By then we are playing catch-up trying to get it under control.

His blood pressure is extremely low right now. He is scheduled to have a blood transfusion shortly. It is Wade's blood so that should go smoothly -- but will you still pray?

I have to tell you how powerful your prayers have been to date: Dr. Segal is Wade's partner...and as such was terribly nervous about the surgery. He after all, has more than a dr-patient relationship with Benjamin. They are friends (and if you know my Benjamin, to be his friend is a very special gift! He is a great kid!) and as such Dr. Segal was not feeling as objective as usual. I was able to assure him with confidence yesterday morning that you were praying for him by name. He was so appreciative.

Today, the scrub tech from the case came by to visit Benjamin and check on us (did I mention that the team at Phoenix Children's has taken amazing care of us?!)....she sat down and shook her head and said she had NEVER seen a case go as smoothly as Benjamin's did yesterday! She just kept saying how amazing it was really because they could not have asked for things to go any better during the Operating Room time (he was there for nine hours, by the way.)!

Oh my sweet friends, this was no coincidence. And frankly, it was not even a testimony to the strrength of the team working on my boy. This was pure and simply God's hands keeping the calm, keeping the steady, keeping the team focused, energized, alert and wise.

It was God's response to the prayers of the saints. My heart can barely contain my gratitude. Thank you, friends. And praise you, God!

He has more hurdles. I know. Can you stay on your knees for this guy of our's? He needs to get his lungs clear and start taking deeper breaths (they have even as I'm typing come in and put a little oxygen mask near his face to help him breathe deeper); he will have to get in a wheelchair tomorrow and that will be painful; he needs the blood transfusion to get his levels back up and his blood pressure more normalized; and he needs to keep resting.

Thank you. I'm praying for each of you, too. That God will mightily bless you and restore to you double all the time you spend praying for my boy!! I love you.

Surgery Update

Len here...Carol said it was a fair but long night. Benjamin has been such a trooper, but he did have some pain and itching - due to the meds. The valium and Carol rubbing put him back to sleep. Please keep praying! Today he will be more awake with more chance for pain.