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.

Happy New Year

It has been awhile since we updated all of you. Trinity is doing well! She had a checkup a couple weeks ago and everything was healing well. She will see the doctor again in February and they are hoping to remove the upper neck part of her brace. They are planning on keeping her TLSO brace on her for probably another 3 months after that, if not longer. They will probably adjust the rod in about May. We are happy to say no problems with this rod so far! Dr. Walker was very happy with the results.
She's having a lot of issues with her bladder and having more frequent UTI's. So she's going to have some more testing done in February to see what is going on.
We had a great Christmas and excited about our New Year!!

It's a Penny!!

Today they did another x-ray and the coin was located in the upper part of her stomach and showed no signs of moving in a 24 hour period, so Trinity's G-I doctor decided it was best to go in and retrieve it. At 11:00 this morning Trinity went in for her third surgery in 5 days. They put a scope down through her esophagus into her stomach and retrieved the "Penny". They thought it would have taken around an hour or so, but it only took 10 minutes! They were all quite impressed with the record time they found it in. She came out of surgery great and made her way back to her room around 12:15. We thought we were there for the night, but we got surprised with the news that Trinity would be discharged later in the afternoon!! We were excited to hear that.
So as I write this we are relaxing at home and Trinity is doing well. She's showing some pain and discomfort, but not surprised with the brace she has to wear. This is going to be a long 12 weeks that she has to wear it. We have the "penny" sitting in a container and will be putting it somewhere in safe keeping. The nurses were all excited to hear what the mystery object was in Trinity's stomach, when we got back up to the orthopedic floor. They were wishing they would have made bets on what it was. When we left today I was once again reminded how loved our little girl is. The nurses all line up as we leave and most giving her hugs and kisses. It feels so good to know that they all have so much love for our little angel!! When I asked Trinity if she was ready to go home, she told me no. I guess that just goes to show how much she loves Gillette and their nurses!!

No Coin

After 2 hours they were unable to remove the coin. They think when they stuck the scope down that it put pressure on the coin and pushed it down into her stomach. They are going to do an x-ray tomorrow morning and a consult with G-I doctors and see where to go from there. They also did a brohnoscopy while they were in there to make sure it wasn't in her airway and of course found nothing, but did find a lot of mucus that they suctioned out and are hoping that might help with her oxygen levels. They had to intubate her for this which they were hoping that they wouldn't have to do, so we are not real sure when we will get out of here.