Thursday, June 23, 2011

Can't Keep A Good Man Down

God is good. All the time. Thomas's follow-up appointment was this morning at Scottish Rite and after an in cast x-ray, we heard those long anticipated words, "His cast is coming off today."

After one more x-ray out of the cast, we were able to meet with the doctor who seemed genuinely happy for us all. We were able to see on the x-ray what Thomas's legs/hips now look like. I'm guessing he has enough metal to set off the detectors at the airport. There are three pins running down the femur bone on the outside holding in part of the plate. The plate then angles where they cut and reset his bone at an angle to better set the bone into the hip socket. What I didn't know was that a part of his bone was chiseled out so that a piece of metal could be inserted near the top and a pin placed at the top to hold the whole thing in. Yes, I said part of his bone was chiseled out. Chiseled. Out. The doctor said this will give Thomas full range of motion in the hip.
Thomas did great when they actually cut off the cast, just laid there and played with an ipad. He didn't complain at all when they did the new x-ray which involved holding his legs down in a position they had not been in in almost two months. What he did take issue with was the removal of the dressings around his incisions. For seven and a half weeks tape had been on his bare skin leaving it very tender and raw underneath. He was not happy when that was removed. Once it was off, though, he was fine. Do not get in a contest with this kid over who has the best scars, he will win every time. They are a bit more severe than I had imagined, about 5 inches long each.

After the last x-ray, we headed to physical therapy where they got him up on some parallel bars and he did bear weight and try to take some steps but was very shaky and uncomfortable. We were given a walker to take home and left the hospital to take our little man and his new hips home.

At home, he had little interest to stand or do anything that involved bearing weight. However, once his sisters were home, that was all the motivation he needed to be up and cruising around the coffee table.

Now begins the rehab as Thomas works to get back to complete independence again. I see lots of swimming in our future. The doctor did warn that he will probably have a limp for about 6 months.

I am amazed by the example God has given to me in my son. Thomas's perseverance never ceases to amaze me. His joy, patience and strength are overwhelming to me. I do hope that in the months to come, as we increase therapy and work to relearn skills I too can be a Christ-like example of joy, patience, strength and perseverance.

We have made it to this point only through the grace of God. There is no way we could have done this in our own strength. He has used so many of you to carry us through your prayers, words of encouragement, meals, childcare, shopping trips, date nights and more. Thomas is the one who will carry the permanent scars as a reminder of these past few months. My prayer is that we all carry the lessons we have learned of love.

God is good. All the time.

P.S. I tried to publish more pictures but I don't even want to talk about it. My.Computer.Slow.Delete.Accident.Grrr.Not.Working.Need.Sleep.

Tuesday, June 14, 2011

You Get What You Get

And you don't throw a fit. A favorite saying of teachers and moms everywhere I am sure. And in our house, it is a rule I frequently reference (although Evelyn does not seem to be interested in following this rule. at all.). These last few weeks it has been a hard rule for me to model, however. I'm a big believer in the modeling aspect of parenting and it is my greatest goal. Since I don't want my kids to yell at each other, I try very hard not to yell at them (am not perfect). If I want them to pick up their shoes, I should pick up mine as well (again, not perfect). If I don't want them to throw a fit because today was the day Thomas should have had a follow up appointment and had his cast removed and we should all be swimming tonight and planning more summer fun and outings for the weekend and Father's Day but we are not because his appointment was delayed 9 DAYS, N-I-N-E D-A-Y-S (or in Zoolander's spelling D-A-I-Y-E-S), then I can't throw a fit, right? Truthfully, I have thrown some fits. On the phone to Mike or my mom or Carole, or alone in my room. Because I'm just soooo tiiiiired and he is soooo heeeeeavy and Evelyn wooooon't stop insert one of the following a) throwing fits herself b) putting things in the toilet c) making a mess d) wanting to be held, especially when I am helping Thomas e) waking up in the middle of the night f)basically being 18 months.

There are a couple of truths here I am trying to focus on.

One. This is not that bad. I have spent enough time in Children's Hospitals, waiting rooms and therapy sessions to know.

Two. Patience is a virtue, and one I have prayed for many times, as well as humility. It is not for me to decide how God chooses to teach me these things, but it is for me to learn them in the lessons he sets forth.

Three. It is quite possible that when our surgery had to be bumped, this same thing happened to another family. And we have been bumped so that the amazing surgeon that has helped my son can have another day of surgery to help more children. Big picture, here.

Four. This is how character is built, our marriage is strengthened and our family is bonded. And those are things I desperately want for my family. I can already see such amazing growth in Olivia and Thomas. (Evelyn is just so young and really only gets that she wants her mama, now, and mama's busier with brother than she used to be, and she is not a fan of that). And I can see how our marriage has only been made stronger with a greater trust in God and one another.

My dear, wise friend Joan had this quote at her desk years ago. I have it copied and found it today on my own desk under a stack of papers.

"We must let go of the life we have planned, so as to accept the one that is waiting for us." Joseph Campbell

This may not be the summer I had planned, at least for sure the next nine days, but the one before me has lots to offer. If I can just stop kicking my feet, punching my fists and get up off the floor to enjoy it!

Wednesday, May 18, 2011

All About Attitude

Finally! A post!
I had such high aspirations to be blogging through this experience of Thomas' surgery and recovery. Ha! Each night, once the kids are in bed, all I really want to do is lay on the couch, watch mindless tv, and then go to bed. When the kids sleep during the day, I try to sleep. And if someone is here to give me a break, then I have tried to get out of the house to see some new sites.
So now here we are, almost a week since we have been home and almost 2 and 1/2 weeks down in the cast. Thomas has been such a great patient since coming home. Don't get me wrong, he was a great patient in the hospital, but would frequently cry, for long periods of time, wanting to GO HOOOOOMMMMMMEEEEEE.
Since we have been home, he hasn't complained hardly at all. Don't get me wrong, he has been demanding, but has dutifully taken his horribly smelling meds, done breathing treatments at all hours and tolerated what looks to be an extremely uncomfortable cast. He is in high spirits; laughing easily, happy to be with family and have friends visit. He is easy to entertain and even just enjoys watching others have fun around him, like when we go in the backyard and he loves watching Evelyn go down the slide.
I cannot express how thankful I am to be Thomas' mom. He is so much fun to be with and such an example to me of a person with childlike faith I want to be. A verse from First Thessalonians has been on my mind throughout this process, "Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." Thomas has been a living example of this verse to all of us and I cannot be more thankful to God for it.

Wednesday, May 4, 2011

Post Op

Last night went about as well I could have hoped for Thomas. He was understandably upset and scared every time he was woken up, which was quite often to be turned, given medicine, take vitals or have a breathing treatment, but would go back to sleep pretty well. Only once did he get really agitated and that was about the time some more pain meds were due so he was able to sleep well after those were given.

The morning started a little rough. Thomas had low hemoglobin so a blood transfusion was ordered. Because of the transfusion they could not give the IV pain meds so he was a little more agitated and upset when he was awake, but would drift in and out of sleep a lot.

By the afternoon the transfusion was done he was able to sit up more and even eat. I think all of that made a huge difference as he started to talk to us some and let us know what he wanted. He is less upset about his cast and more interested in watching movies and eating pancakes.

Tonight we were able to all eat at the hospital. I came home with Olivia so I can go to Muffins with Mom with her in the morning. And believe it or not I locked myself out of the house tonight. Not an easy thing to do and it would be hard to explain how I did it, but I did. The whole reason I came home tonight was to go to school with Olivia in the morning so I was determined to stay the night in my house so that could happen. Thankfully my neighbor and I MacGyvered me into the house. Seems like these things only happen to me!

Tomorrow we hope to spend the day weaning Thomas off the epidural and start getting him sitting up more and even in a wheelchair and possibly out of the room some.

Although we cannot respond to all your calls, texts and email I hope you know how much we appreciate them and knowing you are praying for and thinking of our sweet boy and family. He is doing as well as can be expected at this point, I believe.

I have only taken pictures on my phone and I cannot for the life of me get them all to come up on email so I can save them to my computer and then put them in this post. The only one I can get to work is when the therapy dog stopped by this morning, and it's upside down. I. am. awesome. I will get one of his cast with my camera tomorrow!

Monday, May 2, 2011


Today we checked Thomas into Scottish Rite Hospital. Tomorrow he will have hip surgery on both hips. There are lots of technical terms about the procedure, but the best I can explain it is as follows: they will make an incision at his hip, cut off the end of his femur bone, then reset the end of the bone at an angle deeper into the socket of his pelvis. This will be done to both femur bones. This is to stop his femur from drifting out of socket and eventually malforming causing much pain and limiting his mobility.

Post surgery he will be set in a SPIKA cast. This cast will be from his chest to quite possibly the end of his legs. His knees will be set apart and there probably be a bar between his legs. The angle at which he will be set is still to be determined. He could be laying down or sitting up. And this will be his position for approximately 6 weeks.

We have experienced quite a few emotions leading up to this surgery. Anxious and overwhelmed for sure. But also very thankful. Thankful that we live in this city, home to an amazing hospital that specializes in my son's needs with some of the nations top doctors in the field. Thankful that this amazing hospital will do all of this for FREE. Thankful for an amazing family that loves and supports us sacrificially. Thankful for a community of friends and neighbors that are just as amazing in their giving to our family. And thankful for hope in a Savior that is stronger than any trial this world will put before us.

I have never been more aware of the broken world we live in as I have these past few months. Awareness has come not just as I have wondered why my son has had to live a life with so many obstacles to overcome, but also as I have watched so many friends face heartache and loss. Real heartache and real loss. Almost weekly a call or an email has come with some sort of news that just makes you ask why. Why her? Why now? What sense can this make?

When a dear friend went into labor too early and lost her precious twins, a song was sung at the funeral that has become one that speaks to me regularly. It is Stronger by Hillsong. The lyrics are in my heart and remind me how I will get through each day, how Thomas will get through each day.

Faithfulness none can deny

Through the storm and through the fire

There is truth that sets me free

Jesus Christ who lives in me

You are stronger, You are stronger

Sin is broken you have saved me

It is written Christ is risen

Jesus you are Lord of all

He is stronger than all this. The world is broken. Our hope for better is in Him alone. He overcame sin, rose again. He will bring us through to the other side of this. And I know He is there to do the same for all those that face the same.

We look forward to getting tomorrow past us. Thomas' surgery time is 2:00 and will last about 3 hours. We are told he will probably wake up scared and upset about his immobility. We will spend the days after at Scottish Rite learning how to bathroom, transport and keep him from getting skin lesions while in the cast. Our hope is to be home Friday or Saturday.

I will do my best to keep this updated on how he is doing. I cannot express how thankful we are for all of you. Your love and support is what sustains us!