Cure Pity!!

Something Shannon and I decided quite a while back was that we did not want people to have pity for Trinity. God made Trinity to be a very special little girl and despite her physical disabilities she's still just a little 4 year old enjoying everyday life! Trinity is disciplined just like her siblings and to some people this comes as a shock to them, "Why?" I'm not real sure. Gillette Children's Specialty Healthcare (where Trinity has all her care) is asking people to sign the pledge to "Cure Pity". This is to make people aware that kids and adults with disabilities DO NOT want pity! They want to be treated like you and me. Try to avoid staring at them or making comments that reflect pity. Educate your children, because they will have a time in their life when they will encounter someone with disabilities. This past weekend my sister-in-law shared with me how thankful she is that Trinity is in her kids lives. They don't see Trinity for her disability, but instead for her personality! If you would like to sign the pledge please go to: curepity.org

We are blessed to live in such an amazing school district! Trinity has some awesome teachers that work so hard with her. This week we had a progress review meeting for her and she's doing so well, especially in speech! We are so thankful for all their hard work with her!

This month represents the month 5 years ago we found out about Trinity's diagnosis when she was in my womb. I never thought we would be where we are at today, but I'm so thankful for every hardship and joy we have faced! It has helped our family become stronger and has showed me that my deepest desire is for My Lord, Jesus Christ!

Tracks 4 Trinity

Last Friday a benefit was held for Trinity. The benefit was to help us purchase a Action Trackchair. We not only met our goal but exceeded it!!! It was a very humbling experience for our family. Support came from every direction and a lot of people we had never met before. A lot of hard work was put into this and we are forever grateful to all the people that worked hard to make this a HUGE success!! The chair has been ordered and she should get it in about 6-7 weeks. We are super excited for all the new activities Trinity will be able to do with this chair. I encourage you to check out their website. You may know somebody that could benefit from one of these chairs. www.actiontrackchair.com

Trinity's Special Day!!

I wanted to share this moment on the blog so I would have it forever! Yesterday Trinity had a playdate with her friend Sophie. This is special because Trinity has never been invited to a playdate by herself! She enjoyed many things about this day, but one thing she talks about the most is playing with Barbies in the pool! See Aubree is invited to many different playdates, and Trinity always watches in the background as her sister leaves. This time Aubree watched as Trinity wheeled off for her special day! Thank you Anne for making this a special day for Trinity!! She's still talking about it today!

Home!!

Trinity came home tonight around 5:30!! This is wonderful news for everyone. She's sound asleep in her bed and it feels good to be home!

Sunny Days!

Trinity and I are enjoying the sunshine coming through her window! It looks nice out there! Trinity is doing great! She had a really good night and we both got some sleep, which is always good. We had a few issues yesterday with vomiting and some headaches, but she seems to be doing much better this morning! This laying flat is very difficult for a kid that wants in her wheelchair and is ready to go visit all her friends here at Gillette! One more day of laying on her back and then hopefully we are good to go. Dr. Partington came by to see her last night. She has some swelling in her left leg and are not sure where it is coming from. Hoping nothing is fractured, but we are thinking it may just be fluid from surgery. He should be stopping by sometime today and going to talk with Dr. Walker about it. We would love the continued prayers, but are asking you to add a special little boy to that list. His name is Reece and over the past few days he's been fighting for his life. Please read the posts from his parents @ www.likeoliveshoots.wordpress.com. Pray, Pray, Pray!!!

My "Superhero"

Surgery went great! Dr. Partington was afraid that he would have to work with a lot of scar tissue, but he didn't and that made the surgery go a lot smoother. He's definitely concerned that we will be doing these often until she has a spinal fusion in the future. Not something we wanted to hear, but something we expected. She's been having spinal headaches that seem to be pretty painful, but they are staying on top of the pain meds and controlling the pain. The next 72hrs are the hardest for Trinity! She has to lay flat for 72hrs which helps with the headaches and so there is no leaking of spinal fluid. After 72 hrs she will be slightly raised until they know that she's having no issues with any leaking or added vomiting. With every surgery that Trinity goes through she amazes me everytime how strong and resilient she is! She's my "superhero"! She wore her Superman g-tube cover that was given to her from Will's mom Rebecca. Will is definitely missed, but always in her heart! We are blessed beyond measures with the outpour of love and prayers! Thank you!! Trinity is resting comfortably in her bed, so I think I should probably go to sleep myself!

Surgery in 2 Days

Trinity is scheduled to arrive at Gillette on Wednesday @ 8:30, with a 10:00 OR time. Not sure how long the surgery will take, but I'm guessing 2 hours. We will try to post on Wednesday after Trinity gets out of surgery and settled into her room. We appreciate all your love and prayers!

Tethered Spine

So about two weeks ago I had this long post typed out and ready to post on here, just FYI God did not gift me with the ability to write beautiful things so when I write a post it takes me forever and I have to read it over and over until it is perfect. Well after perfecting my post it vanished and was NO where to be found. I got frustrated and have not returned to the blog until today. So I apologize for the delay in getting this post wrote. Trinity's first lengthening went great with no problems. She also had a MRI done to look for a tethered cord which they found. This has been causing some issues with her legs and is showing some spasticity in the left leg. They are not 100% sure this is what is causing the problems. So on June 20th they will be untethering her spinal cord. She had this same surgery back in December of 2009. It's not real common to have to do this surgery more than once, but they think that with the spinal rod and the lengthening this will continue to happen until she gets a spinal fusion done. So we are looking at a untethering surgery at least every one-two years until she gets the fusion done. Trinity has been in a Special Needs T-Ball league. It has been such a joy to watch her play and the field that she plays on is designed just for these kids. I wish everyone could watch these kids play. It's so humbling and inspiring to see the joy these kids get when they hit the ball, the crowds cheer and when they reach home plate the crowd goes wild!!

Spinal Rod Lengthening

I can't believe it's already been 6 months since Trinity's last surgery. So now it's time for her first rod lengthening. It's scheduled for this Wednesday, May 2nd @ 10:30 with an MRI following. This should be a pretty simple surgery with an OR time of 2 hrs and the MRI taking about an hour. She will need to be in the hospital overnight and has a day full of appointments on Thursday. This past Thursday Trinity had her appointment with Dr. Ward, her PM & R(Physical Medical & Rehab)doctor at Gillette. We've had a lot of issues with her left leg in the last few months. It will get stuck, be tight and hard to move and bend. Dr. Ward is concerned that it could mean tethered cord again. This is a surgery she had back in December 2009. It's usually not common for them to need a repeat untethering surgery done, only 10-20%, but when has Trinity ever fit in the top percentile?!? we will know more for sure on Wednesday after they do the MRI of the spine. My prayer is that it's not a tethered cord and that it's something that can be fixed without surgery. This week was our "Special Angel" Will's 5th birthday. I'm sure he had a great celebration in Heaven! His mom, Rebecca, mailed us some pictures of him and some with Trinity and him together. Trinity wanted them in her room and looks at them often. He has a special place in her heart and I know without a doubt that he's watching over her. With every scary thing she will face he will be there holding her left hand as Jesus holds her right!

Heavy Hearts

I should have posted last week, but just couldn't find the words to write. On March 9th Trinity's dear friend, Will, went to be with his Heavenly Father. Trinity and Will became good friends at Gillette in July 2010 when Trinity had her G-Tube placed. Over the past couple years their family has become family to us. Will's mom, Rebecca, has become a great friend to me. Someone that I admire as I would watch her care for Will and do it with so much love and grace. She inspired me to always be better and to not focus on the negatives, but to look at the gift that God had given me. In September when Trinity had her growing rod placed, Will also had a surgery (we may have planned the timing!). Trinity and Will's rooms were across from each other and all the nurses and doctors called them Romeo and Juliet! On Friday Trinity and I made the trip to Algona, Iowa for Will's funeral. What a beautiful service and the Pastor did an amazing job with the message. I was very nervous taking Trinity, but I'm glad I did. She was confused at first and still asks for Will, but I know he will forever be her "Angel"!! Please take some time to visit his Caring Bridge website, www.caringbridge.org/visit/willlewis

Not much is new here. Trinity has a dentist appointment tomorrow and some other upcoming checkups. We did hear from Dr. Walker that they will be lengthening her growing rod on May 2. This should be a simple procedure with just an overnight stay.

We are enjoying this wonderful weather!!! The kids love being outside and playing with the neighbor girls.

No More Neck Brace!!

Many new updates to share with you, but let's get to the good news first! Yesterday Trinity had her Orthopedic appointment. The X-ray looked good and the rod has stayed in place. After 3 months of the neck brace it finally got to come off yesterday! Trinity was so excited to get it off! She's a little week in her neck from not using it, but overtime she will restrengthen. They are thinking the TLSO will have to stay on until a fusion is done in the future. The one rod is not strong enough to hold her curve and they just don't think a second rod would be good for Trinity, so we need to keep the TLSO to keep her back supported. They will do a lengthening to her rod in May. We also discussed her feet. We have noticed lately change in the shape of her feet. So they would like her to start wearing her AFO braces on her feet and ankles to keep them from getting any worse. We loose one thing and gain another.

Last week she had some tests done on her bladder. They did a Urodynamics test. This test would help in telling them the amount of volume her bladder can hold and the pressure that the bladder has when the bladder starts to fill. Basically anyone with a normal bladder doesn't show any pressures because when their bladder is full the have the ability to empty it. The test showed that she has a very poorly compliant bladder whose pressure exceeded 20 when filled with less than 100 cc of water. Her end pressure was about 50. This is bad! You don't want to see pressure at all, but you really don't want to see it above 40. This over time can cause kidney failure. So for the next 2 months we are going to be doing a Foley catheter overnight so her bladder does not reach high volumes and continue cathing her 4x's a day with irrigating the bladder twice. If she continues to get UTI's over the next two months we need to see the doctor sooner than our April follow up, otherwise in April they will rerun the tests and see if anything that we are doing is working. The doctor would like us to consider a Vesicostomy. This is an opening in the abdomen that allows urine to drain continuously from the bladder. A small wall of the bladder is turned inside out and sewn to the abdomen. The opening would look like a small slit surrounded by pink tissue. This can be reversed at any age when Trinity is socially ready to be out of diapers. This procedure will help reduce UTI's and kidney damage. The doctor feels this surgery is a good choice for Trinity. There a minimal risks and he has seen very few revisions have to be done. Shannon and I have some praying to do about this.

Some other good news, Trinity was a recipient of an iPad through the local Rotary club!! One of her fabulous teachers Mary Beth, approached them about Trinity and her needs, especially in her speech and how the iPad would benefit. This is really exciting and we are anxious to start getting apps for her. She loves using it!!!

Happy Valentine's Day!!!

"I am your Strength and Shield"

As I awoke today to Trinity saying, "Mom, I awake!" I probably didn't respond like God wanted me to. Over the last month sleep has been a thing of the past in our house. Trinity has nights that are restless and Trew has not gotten to the point of sleeping through the night, in fact he probably sleeps worse now than he did when he was a newborn. So when Trinity yelled for me this morning with that sweet little voice, I rolled out of bed, very out of it, and not ready to start my day. See starting the day in the Arthur household is not as easy as getting out of bed and grabbing a cup of coffee. Trinity has a lot of needs in the morning and at bedtime and I will fully admit that there are times I want to shut the door to my bedroom, pull the covers over my head and pretend like I can't hear those small voices yelling for me. I need prayer, BAD!!! I am tired, overwhelmed with life, and probably unbearable to be around at times (just ask Shannon!). But today God gave me some words to ponder on during my devotion time and I want to share it with you.

"Follow Me one step at a time. That is all I require of you. In fact, that is the only way to move through this space/time world. You see huge mountains looming, and you start wondering how you're going to scale those heights. Meanwhile, because you're not looking where you're going, you stumble on the easy path where I am leading you now. As I help you get back on your feet, you tell Me how worried you are about the cliffs up ahead. But you don't know what will happen today, much less tomorrow. Our path may take an abrupt turn, leading you away from those mountains. There may be an easier way up the mountains than is visible from this distance. If I do lead you up the cliffs, I will equip you thoroughly for that strenuous climb. I will even give My angels charge over you, to preserve you in all your ways.
Keep your mind on the present journey, enjoying My Presence. Walk by faith, not by sight, trusting Me to open up the way before you." Jesus Calling 365-Day Devotional

I am in a rut and I need to get out of it. Shannon is the most amazing husband and father. He lets me go do things with my friends at night and a couple weeks ago I got to enjoy a weekend with some of my girlfriends at a cabin. But see what I really need is some one-on-one time with my husband. I need a vacation!!!! I need sleep!!!! We are blessed to be a part of a wonderful church that provides Respite Night for parents of children with special needs, so we will be participating in that next weekend. I think I am having a pity party for myself right now. I look around at our friends and family and often wonder, "What is life like for them? Do they know how hard it is for us?". WOW, BAD ATTITUDE!! BUT, God is at work in me. He's changing my perspective on life and giving me new glasses to look out of. It is not about me and how I am feeling, it's all about HIM!! My focus is changing and I am a work in progress. We don't change overnight, but I do have the choice of my attitude everyday. I need to learn to let God take control of all the troubles and trust that he will see me through everyday! Being a parent of a child with special needs is not easy, and some days I want to run away, but I would not trade one day of my life for something different. God gave us three beautiful gifts; Aubree, Trinity, and Trew! Now it is Shannon and I's responsibility to raise them to love the Lord and serve Him. "Train a child in the way he should go, and when he is old he will not turn from it." Proverbs 22:11
My hope is that if you are reading this right now and wading through the troubled waters of life, I hope you see that waiting on the calm shore is Jesus and his arms are open wide ready for you to let him have the driver's wheel of your life!

Prayers Needed!!

Trinity could really use your prayers. She's vomited everyday since December 21st. Some days she vomits once and others it can be 2-3 times. It usually occurs when she's in bed or when we get her out of bed in the morning. Yesterday they did an MRI and Tapped her Shunt. They found nothing. Which I guess we should look at as a positive thing, but it still leaves us with the question of what is going on. Trinity has vomiting issues anyways, but never this frequent. They also did a urine culture and found nothing. So if any of you have kids with similar issues, PLEASE COMMENT and give us some advice. I feel like we have tried everything on our end and we are still not seeing any improvement. If you also have any good suggestions for GI doctors or any suggestions at all PLEASE COMMENT!!! We are frustrated. No one seems to be able to give us any answers. Prayers would also be very much appreciated! God is the Great Physician and can still provide a miracle.

Her back is healing great! She goes back to the doctor on February 13 for an x-ray and checkup with the Orthopedic surgeon. She's also having some bladder tests done in February also.

Trinity is glad to be back to school. She loves being with all her friends and teachers. We had an IEP meeting and they had nothing but great things to say about her. It is nice to hear some positive things for once, instead of negative.