Week #3 Update

I could never be a writer because I struggle just titling our blog post! :-)

Things are going really well here. Trinity is just starting week #3 in the halo and is a rock star so far! Her current weight on the traction is 10 lbs and they hope to get another 2-5 lbs on there. Tomorrow she will have an x-ray that will hopefully show them how her spine is responding to the traction. In a couple weeks they may have a better idea of when the spinal rod could be placed.

So far we are adjusting well to our new way of life. My husband is amazing and brought me up my own coffee pot so I could brew my own right from the comfort of my room! The nurses are making comments about getting their morning coffee from our room. ;-) Aubree is staying with Trinity and I this week. Trinity has a lot of activities in mind for her!

We continue to appreciate all the prayers. This is definitely a trying time for our family to be apart, but God has already done some pretty amazing things during our stay here. Shannon has had the opportunity to pray with multiple families and a homeless guy during his run on Saturday. Our family was blessed to serve a meal at the Ronald McDonald House on Saturday night and it was nice to actually cook a meal and bless others.

Our family and friends have shown us so much love over the past 2 weeks. Trinity is fully stocked with coloring books, crafts and books to read. I have been blessed also with books and yummy snacks. Shannon and the kids are being very well fed while at home and have received some great gift cards to help with gas and food during their travel here. Our words of gratitude will never be enough to express how deeply grateful we are for the support we have felt.

Blessings!!

Week #1 Halo Update

The halo is placed and the skin flap is done and so far Trinity is doing pretty good!

Everything went great Monday afternoon with the halo placement and the skin flap. The halo only ended up needing 4 screws (which is pretty good). She will only have one skin flap procedure and so far that has been healing really well. They started with a weight of 5lbs on Tuesday. They are trying to add 1 lb a day, but because of some symptoms that she was showing they decided not to add any weight today. Otherwise, they hope to add 1 lb a day until she's up to 1/3-1/2 of her weight. A couple times a day they check her neurological functions through simple tests of the eyes, facial muscles and movement in the arms, legs, toes, etc. These tests will help prevent complications like: pain and weakness in the neck muscles, swallowing muscles and tongue, pain and weakness in the eyes, and neuromuscular complications.

She has been a brave little girl! Below are some pictures to show you what she's been up to.

We have been so blessed by all the beautiful messages and the kind gifts that Trinity has received. God has blessed us with some amazing friends and family!

Love,
The Arthur's

Halo Traction and Skin Flap

Good morning to all our family and friends! I know it has been a long time since we last posted an update on Trinity, however today we post as our family prepares for yet another procedure for Trinity. This procedure is a Halo Traction and Skin Flap that will be done on June 27th.

In May we made a trip to Gillette in St.Paul to see Trinity's Orthopedic Surgeon. Because Trinity's curve is currently 110 degrees the doctors feel that the only good option for Trinity, to get her spine straight and save her from a spinal fusion at a young age, would be to do the Halo Traction. She will need to stay in the hospital for 2-3 months. During the placement of the Halo they will also do a skin flap. Skin Flap surgery is a piece of tissue that is still attached to the body by a major artery and vein or at its base. This piece of tissue with its attached blood supply is used in reconstructive surgery by being set into a recipient site (injured area onto which a flap or graft is placed). Sometimes, the flap is comprised of skin and fatty tissue only, but a flap may also include muscle from the donor site (the area from which the flap is raised). Because of Trinity's scar tissue from many surgeries last year and her initial back closures, this becomes a road block for putting a spinal rod in. So the hope with the skin flap is that they will be able to put a spinal rod back into Trinity after the Halo Traction and prolong a spinal fusion for 2-3 years. Below I also provided a description of what the Halo is:

What is Halo Gravity Traction?

Halo gravity traction is a procedure used to reduce the degree of curvature in the spines of children with severe idiopathic or congenital scoliosis. Spinal traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten the spine. A scoliotic curve allowed to reach high degrees of measurement may increase pressure on the lungs and heart. The result can be a decrease in life expectancy by up to twenty years.

Who Needs Halo Gravity Traction?

Halo gravity traction is needed by children with severe curves in their spine (80+degrees) who have not had success with other measures of correction, such as serial corrective plaster casting and serial bracing. Halo traction is also needed by those children with high curves who are not eligible for other measures of correction because of congenital defects in their spines. Many of these children are already experiencing stress to their heart and lung functions. Patients with severe infantile, juvenile and adolescent scoliosis and Scheuerman’s Kyphosis may be considered likely candidates for halo traction.

What is the Expected Outcome of Halo Gravity Traction?

Each child with severe infantile scoliosis will experience a unique outcome. Many factors, such as the stiffness or flexibility of the spine and whether congenital scoliosis with previous fusion is present, will affect the outcome. The goal of treatment is to safely bring the curve to the smallest possible degree and delay spinal fusion (if not already fused) until spine growth is close to finished, or maintain correction achieved via serial casting, bracing or instrumentation. Typically, a curve is reduced by about 50%-60%. The emphasis is placed on the child’s heart and lung health and not the number of degrees.

To be honest none of the options given to us were great ones. But, this option is the only logical one that will give Trinity the best quality of life. The circumstance is not ideal for our family, but we are trusting that with the support of our family and friends and most importantly prayer, the time will go smoothly for all of us and the 3 months will go by quickly. Miranda and Trinity will be up at Gillette for the full 2-3 months and Shannon and the other two will stay back in Iowa, visiting us on the weekends.

Prayers are greatly appreciated for our family as we make this transition. I would be lying if I said that we all felt good about this, but the truth is it makes us all anxious at the thought of being apart for that long. God keeps reminding me that He's still in control of this situation and that He will be glorified through this. That even in our most anxious moments He will be there to calm our hearts and direct our thoughts to good things.

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

We will keep you all posted during the stay in the hospital. Thank you for your prayers!

With Love,
The Arthur's

Thank You!!!

All your prayers over the past 2 months have been heard and felt. Yesterday we made another trip to Gillette to have Trinity's back looked at and to have blood work done. Everything looks great! Trinity's back is healing after a week of doing a wet to dry method. Her blood work also looks great, all her levels are at a normal range. The plan moving forward is to continue to treat her open wound, twice a day, with vaseline over it and then covering it with a bandage. She will also be on IV antibiotics until Friday night and then they will switch to Bactrim for 4 weeks. She will have a checkup again in 4-5 weeks. The plan for her scoliosis is to check it every couple months with an x-ray and Dr. Walker is thinking 4-6 months until a new rod can be placed. Her back needs time to heal and we also need to make sure she's infection free.

This is all great news, especially after the past month of being in and out of the hospital. All your prayers and support has helped our family in so many ways. Thank you will never be enough to express our gratitude!

**Below is a picture of Trinity's back currently.

Home Sweet Home!

It feels good to be home. To have Trinity smiling again with her brother and sister and to hear her laugh when they do something crazy. I haven't heard that laugh much in the past two weeks, so it's great to hear it again. Trinity is feeling pretty good. She's definitely not herself yet, but that's going to take some time. She's still having a lot of pain and discomfort, and gets tired pretty easy.

I have to admit as great as it is to be home, there were a lot of responsibilities that come with being home. On Saturday night, Shannon and I were taught how to do IV infusions for Trinity three times a day. It's not so nerve racking when we have to give them during the day, but the one in the night is challenging. To remember that the line can have no air in it, saline flush it before and after the antibiotic. But most importantly remember to keep everything sterile, because otherwise she will get an infection in her blood. It's a lot to remember when you are sleep deprived. She also came home with two drainage tubes. These have been a bit challenging, but mostly just in making sure they don't get pulled out. We go back next week for a follow-up appointment with the doctors and to have some lab work done. The IV infusions will last for four weeks, as long as the labs come back and show improvement, and the drainage tubes will come out next week at her appointment.

This weekend I found myself with a bad attitude and that is not where I want to be. My devotion this morning was on "Dealing With Change". Hmmm...I think I can relate with this one. We pray to God for success, but we resist the changes needed to get there. I was ready in so many ways to get home, but now that we are home there is a lot more responsibility than before I left. God knew that these changes were coming, so although I didn't recognize it at the time, He was preparing me and equipping me for these changes. In "all things", including things you don't like, God has a "purpose", and He's working for your "good". You'll look back and say, "If I hadn't gone through that, I wouldn't be experiencing the blessing of God I enjoy today." (some of this was taken from my devotion, "The Word For You Today")

Our family has been blessed in so many ways over these past two weeks! "Thank you" sometimes doesn't feel like enough, but I hope you all know how much we appreciate your prayers and acts of kindness. Please continue to remember Trinity in prayer for healing and also that her scoliosis.

Much Love!!

Preparing for Home!

I hope I'm not jinxing myself with this post, but looks like we will be headed home tomorrow! Both surgeons will come in tomorrow morning and change the dressing on her back and around her drainage tubes. If all looks good we should be discharged by 12:00 tomorrow!!

It hasn't been super easy getting her up in the brace and wheelchair these past 2 days, but we are slowly making progress. I think right now the hardest part is weaning her off some of the pain meds. We will get trained tomorrow night on how to give her the IV antibiotics over the next 3 weeks.

Trinity is doing pretty good overall. She tolerates her brace and the wheelchair for about an hour and then she needs a break. Personally I can tell a difference in her posture without the rod. They did an x-ray today so we know where she's at with her curve and can keep an eye on it while the rod is out. We will come back in 2 weeks to get the drainage tubes out, run labs and look at the wound. Then Dr. Walker will see about once a month until we get a new rod figured out.

We are just excited to here some good news for a change! We still need the prayers to make sure that the infection gets cleared up with the IV antibiotics and that her little body can heal from all these surgeries. Also, pray that her scoliosis can be stable while using the TLSO, that way her body can heal for 4-6 months before they put in another rod.

Perseverance

So I have a few thoughts before Trinity faces surgery today...

Last night before Trinity and I shut the lights off for bed, her nurse and I had a very interesting conversation. But at the end of our conversation she asked me, "Do you feel pity?". I asked, "For Trinity?", she said, "No, for yourself?". Hmmm... I actually had to think about this for a couple seconds. To be honest, I would have said no a few weeks ago, but over the last week, especially Monday night, I developed this "poor me" attitude. She really opened my eyes and by just asking me that one question, she spoke Truth to me. One thing Shannon and I have always strived for throughout the 7 years of Trinity's life, is that we never let others feel pity for us. That they would see the joy that Trinity brings to our lives, and despite our circumstances, we are just as happy and blessed as the person sitting next to us with 3 healthy kids. This situation we are in right now is definitely not ideal, but what's faith if your living in the valley? God wants me to look at this mountain we are climbing and rejoice through every step and trial we face.

Another reminder God placed on my heart was my theme "words" for the year 2015. Back in January, our women's ministry team each came up with a theme word and verse for the year 2015. This was hard for me, because I wanted to know for sure that the word and verse were both something God wanted me to focus on. After much thought and prayer, God gave me words and a verse. One of my words was, perseverance: steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement. At the time that He gave me this word I really wondered why, but now I see. Sometimes we run the race of life and challenges occur. We may get injured along the way and the road might be rough, but we are called to persevere through it all. Despite how difficult the last 3 weeks have been, I'm going to continue this race with faith, perseverance and joy. Yes I said "JOY", because there is a plan much bigger than the one I currently see and I may never see all that is accomplished through His plan, but I trust that nothing in ever wasted with God.

Surgery is scheduled for 11:30 today. So far no new bacteria has grown from the cultures. The plastic surgeon is hopeful that he can close the wound without doing a skin graph, but he won't know for sure until he gets in there and works with it. If all goes as planned today, we will be discharged on Sunday or early part of next week. She will still go home with IV antibiotics for a couple weeks.

"Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it." 1 Corinthians 9:24
"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." 1 Peter 5:6-7