Trip Re-Cap and The Answers…

Wow what a whirlwind three days! We were blessed beyond belief; we walked in peace and Joy! Even though we walked in peace things were hard; imagine taking a child in a wheelchair with four medical machines, liquid medicine and a feeding bag through modern day airport security that in and of itself is a feet to accomplish. The airport was very great at accommodating our needs. Once we arrived at our hotel in Boston we realized we left a very important cord in a bag on the airplane; we almost had to head to the hospital early. But thankfully in less than a half hour Dustin was on the phone with someone who went onto the airplane found the cord and brought it straight to us! We arrived at Children's the next day for Noel's appointment. I have to say there was a strange peace and familiarness about walking into a Children's Hospital. I felt in my "world", like I can do this; it's crazy I feel more comfortable in a hospital than an airport. We meet with the G.I doctor, Dr.R, he was amazing! He explained so much to us, more than I've ever heard before. He told us that the chances were high that there would be nothing physically wrong with her stomach and intestines but she could be getting the wrong sensations sent to her brain. He said the test he was going to preform would tell us exactly what was happening in her stomach and intestines. She was admitted to the ICU for the night and the procedure was scheduled for 1:00 the next day. Around 12:00 the next day everything was going as planned until the anesthesiologist wanted to see Noel's records from Denver; giving anesthesia to people with Muscular dystrophy is very risky and she is at risk for complications. I appreciated the cautiousness of the doctor, but in getting the records it delayed her going into the O.R. 4 hours to which we were told we wouldn't be able to make our flight out the next day. I wasn't surprised; in booking our flight home I never thought we'd actually be heading home on Wednesday-it was just wishful thinking! I was on the phone in minutes talking to a dear friend about helping change our flight. After her procedure the doctor assured us the testing would be complete in time to catch our flight. We had to trust the Lord that either way it went He would be in it.

In the O.R. Dr.R put two tubes into Noel: one into the hole in her stomach where her g-tube goes, the other went up the other end into her colon. At the ends on the tubes there were 8 sensors each for a total of 16. The sensors were then hooked up to a computer and each sensor was able to measure the pressure and electrical impulses of her intestines. Technology is so amazing! The next day, Wednesday, they began the testing. They gave Noel food and other medications to monitor what her stomach was doing. After a 6 hour test the doctor came back to tell us the preliminary results; it will be weeks before we have the actual results. Noel's stomach and intestines work! Mechanically everything is doing what it is supposed to. The problem is her brain. She is getting the wrong sensations sent to the brain which tells her that she's in pain. These are the best results we could have found. She does not need a transplant, she doesn't need surgery; what she does need is medicine. Up until now we've been treating her stomach with medicine to help it function correctly. But what we really need is to give her medicine to help her brain; I don't know yet what she'll be on but Dr.R talked about mild doses of antidepressants. She needs more serotonin in her stomach; ironic cause serotonin is happiness-joy! She needs more Joy!! (Don't we all?) This will be a long process of blocking the pain sensation from the brain and then re-teaching her that the sensations she feels when eating are normal and not painful. She can be healed!

This trip was amazing I could feel God's fingerprints over every aspect. I was beyond prepared for every possible what if; a friend put it this way: It's like I had to pack a separate bag for every possible what if, and since I didn't have to open all the "What if bags," now what do I do with those bags? In five years of this journey this is the only time things have ever gone according to plan. Even as we drove to the airport I still wouldn't let myself think we'd actually be home, ready to celebrate Christmas as a family. However, I do have to say that even if I would have had to use one, two or even all of those "what if Bags" I would have still felt God's fingerprints over everything. God is not just there when everything is going smooth, good, according to plan. He is there is the hard times, the unexpected, the worst case scenarios. God is good all the time. I am so blessed beyond belief; I went to Boston with Hope and came back with an answer-JOY!!

Feeling Blessed in "Beantown"

Blessed is the major feeling we have tonight. Thank you for the prayers, we are feeling them. So far the only slight complication is a very important cord, the one that runs Noel's oxygen machine, got left on the plane-it should be here shortly though. We had a smooth plan ride, tons of help from all the crew and airport staff. We are getting ready for bed to prepare for Noel's appointment tomorrow at 1:00. After her appointment she'll be admitted into the ICU at Boston Children's. I am very hopeful our trip will continue on this tone of peace and Hope. Thanks again for the prayers :)

Love,

Tina

Leaving on the Wings of Hope

Our Bags are packed, the house is getting quite and I'm getting slightly nervous… I know all things work together for good for those who love the Lord, but I would be lying if I didn't say I'm a little scared. I have to live by the quote, "Do it afraid." This trip has been compared to getting out of the boat and walking on water. I know because God called me to get out of the boat and walk, I will no doubt walk on the water; I just don't know what it will feel like. It's been fun to see God show up big time in every area of this trip. We have been so blessed by our amazing friends and our church family with an overwhelming outpouring of love, prayers and financial help. Thank you to each and every one of you; without you we wouldn't be going! So tonight as I fall asleep, I give this trip to God; as we take Noel on a Journey 1,700 miles across the United States my heart is filled with HOPE. I will always have hope in the Lord. So for now good night and God Bless,

Love,

Tina

Boston Bound

On December 18^th in the wee hours of the morning Dustin and I will pack up Noel, her numerous supplies and medical equipment, headed to Denver to board a plan that is Boston bound. As you've heard me make reference to many times that having a child with special needs is like being in Holland when everyone else is an Italy; this trip will be like that. You see we're heading to Boston by way of Holland. Taking a trip to Boston from Italy doesn't sound like much; you go to the airport get your tickets, board the plan fly 4 and half ours then land in Boston; pretty straight forward. However when you're planning a trip leaving form Holland it's much, much different. There's about 15 more stops along the way and much more travel interruptions. We are heading to Boston so Noel can receive much needed intestinal testing that is not offered here in Colorado. When we leave Sunday morning we'll be leaving with our five year old little girl, her ventilator, oxygen, suction machine, feeding pump, emergency supplies, diaper bag, toys and all the normal luggage needed when taking a trip. We will then have to unload at the airport, make it through security, to the gate, to then load everything listed, except the luggage, onto the plane to have next to us incase anything is needed during the flight. We will then provide care to Noel for the next 4 and half hours not knowing how the altitude will affect her breathing or her muscles. Once our plan arrives in Boston we have to get through the airport with our entourage of medical equipment and find whatever form of transportation I figure out that can get us to our Hotel. Once at the Hotel after a full day traveling with our sweet girl, we must unload all her equipment and set up a mini hospital for the night. The next day, Monday, we will transport her to Boston Children's Hospital where she will be admitted to the ICU unit to prepare for her procedure. The next morning she will go into surgery where two sensors will be placed inside her intestines for monitoring. Theses sensors will stay in place for 24 hours, during that time they will give Noel different foods and medication and record how her stomach works. The plan is for her to then be discharged on Wednesday afternoon so we can fly back home. The results will help us know what the next step is for Noel, if there's some kind of surgery they can do, if they have a medication we haven't yet tried or worst of all that there's nothing they can do for her. This whole trip will take place the week before Christmas and our other two children will have to stay home without us. As you can tell we will need lots of prayers as we set out on this leg of the journey. We will be calling on God's strength every step we take. Our hope is we will be able to share the love of Jesus to all we meet as we travel during His season. Noel likes to be called, "I've got the Joy," so I like to say we're bringing Joy to Boston for Christmas. The other thing I can't help but wonder is why do we have to go now? I've been anticipating this trip for 3 years; and when I got the call saying it was the week before Christmas I couldn't help but think, well her name is Noel… Maybe this is her Season, her chance to get the best Christmas present ever… to be HEALED!! Thanks for loving us and supporting, this will surely be a time of big testing which will bring forth big testimony, and without a doubt there will be big blessing…

Love,

Tina

Blessed Are Those Who Mourn

I began a season of mourning for Noel in March of this year. I mean deep down gut wrenching mourning. It began after another sleepless night because of the severe pain Noel was experiencing. Her stomach was aching, she was nauseous and she couldn't sleep. So many of her nights are this way; simply put her stomach doesn't work and the doctors don't know why. I went to Google because that's where I have earned my "nursing license" to be able to care for Noel; when I don't know or understand something I Google it. Of course it was about one in the morning; isn't that the best time to learn? I started researching Myotubular Myopathy. Up until October of 2010 I had always been told that Noel's diagnosis was Congenital Muscular Dystrophy. At Noel's October muscle Clinic appointment a new Doctor saw her and said that she looked like she had the characteristics of Myotubular Myopathy. I stored that away in my brain but didn't think too much about it until that night in March. I thought maybe she does have Myotubular Myopathy and maybe that will explain why her stomach doesn't work. So I started researching; first I found a support group for kids with this condition, as I looked at pictures of two little boys I was convinced, they could have been brother and sister with how similar they looked. So I dug deeper and instead of finding a link between this disease and her stomach, I found that these kids with this disease don't live very long. Every story I could find or blog I went to ended very sadly; most the kiddos didn't live past 6 or 7. What? Could that really be? I always knew Noel's life might be shorter than most… but only to live until she's 6 or 7? My other daughter Lily would be turning 6 in April… That just wasn't enough time. At this point Noel's health wasn't very good; she was struggling to gain weight, to eat through her stomach, she wasn't constantly in discomfort and pain, she slept on a ventilator. I could imagine her being one of the kids who only made it to 6 or 7. I began to cry, to sob, to ach for my little girl. When I couldn't read anymore I crawled into the bed next to her and I mourned. I mourned the unknown, the possible, the "what if's." But that was only the beginning of the season. I didn't wake up in the morning feeling better, I woke up in the morning still mourning. I didn't know what to do with this feeling? I felt as though not many people would understand. I thought people would think I was supposed to believe in healing, that she will be restored, that she will BE HEALED. And I believe it to my core that Noel will be healed but what if it doesn't happen until she's with Jesus? It's something I understand but I was worried no one else would. I walked around heavy, full of emotion; I would cry and weep in the shower when I was alone. I would hold Noel so close, many nights I would go in her room crawl in her bed hold her and weep. Very slowly this new feeling brought me to a new place of vulnerability. Slowly I opened up to friends; I let them into what I was carrying. I invited them into the deepest places of my mother's heart; I allowed them to see what life was like for me. And slowly as I opened up during my season of mourning I began to receive comfort. I started to get help. Help with things as simple as help with laundry, as wonderful as a home cooked meal brought to us, and as deep as a prayer circle crying out for me, for Noel and for my family. And since then it's continued; the comfort has continued. During this last hospitalization with Noel I went to such a deep place with God. I was lying next to Noel in her hospital bed; she had looked horrible that day as sick as I've ever seen her. I awoke that night to the terrible sounds of her lungs. In those quite moments alone, when there was no nurse or doctor in the room, when it was just Noel, me and God I gave her to Him. I asked Him is this her time? Is she going to make it until the morning? Is this the day I leave the hospital without her? And in the depths of that place, in the midst of the deepest mourning I've ever experienced I was comforted. The presence of the Lord in that moment was so thick. I knew that He was there to comfort me, that no matter what the morning brought He would be there with me. That if I left the hospital without Noel I wouldn't leave alone, I would leave being carried in His arms. As you know that wasn't the morning I had to leave Noel, I know that the time may come but I know that no matter when that time is I will be comforted because the Bible says in Matthew 5:4 "Blessed are those who mourn, for they will be comforted." I also know because I walk every day carried by that comfort.

Tina

Here's a link to a great message preached on this verse: Blessed are those who Mourn

A Place to Call Home!

Earlier this year I heard an awesome sermon (click here to listen) about how we overcome by the blood of the Lamb and the Words of our testimony. The words of our testimony? Some may wonder why it's important to share what God's done in our lives. I knew it was important to share with you the words of my "big" testimony because I knew it was important to let people know how far God has brought me. That it wasn't myself that got me out of a hopeless life; but it was God's divine grace on my life that He brought me out and blessed my life abundantly beyond anything I could even ask, think, or imagine. But the more I think about it it's just as important to share everything God's doing in our lives, because it's all "BIG." So I wanted to share with you about the Blessing of our new Home! To start off I want to tell you how we found the house we are in now. We had been living in Fort Collins in a small three bedroom apartment. We came to a point and realized Noel needed a bigger place for her, all her equipment and her nurses. Since it's not easy to take Noel out-and-about we wanted a nice place for her to be Home. I looked day and night, craigslist, rental sites, anywhere I could think of to find a home. I got discouraged when I could never find the "right" place. Then one day I was picking up the kids from school, which also happens to be our church. I felt the Lord tell me to go inside and look at the bulletin board. It was one of those times when I wasn't sure if it was me or God so I kind of dismissed the thought. When I got to their school I had to go inside and get them, usually there is a pick up system but that day it was closed. So as I was walking by the bulletin board I remembered the thought I had to I look at the bulletin board and to my surprise I found the exact house I had been looking for! It was the price, number of bedrooms and the location we had been looking for! It was a true blessing and answer to prayer.

Now fast forward a year and a half; we found ourselves in the position of needing to move to provide a better Home for Noel. Again this time we needed a bigger house, (it's crazy the amount of "stuff" one 4 year old medically complex kiddo has; our house is a small hospital.) We also needed to be closer to city convenience; stores, pharmacy's, better schools and closer to therapy. So the search began, again. We knew our lease would be up in March so I started looking mid-December. In the beginning we were looking for a house that had a shop attached so the Dustin could work from home. We found a few options, all with house that weren't ideal but I was willing to settle. None of the houses ended up working out so again I got to a place of discouragement and I decided I had to give the House to God. At the end of May Dustin got a job that he had to have a shop to be able to complete it. He went out one day looked at a few places, came home looked on Craigslist and found two amazing options. To say I was a little discouraged would be an understatement. He found two options in one day; he got to pick which one he wanted? I was very happy for him but I was sad to think I'd been looking for months for a home and hadn't even come close to getting two options to pick from. I sat in my pity-party for a while and then decided to give it back to God. July came around and as you all know Noel was in the hospital and really sick. A house was the last thing on my mind; but in the little time I had I checked Craigslist out of habit, you know how that is: check emails, Facebook, craigslist. And again to my surprise I found an awesome house. I emailed the lady and was surprised when she emailed me back and asked me to friend her on Facebook so I could see more pictures of the house. At first I was a little weary to "friend" her but I thought hey I can always delete her if it didn't work out. Well God had bigger plans and He used Facebook. The first message I received from her was that she was praying for our family, she is a nurse and understands what we're going through and her family just wanted their house to be a blessing to another family. Wow, I was so encouraged and surprised when I read those words. At the same time another friend was renting their house and said we could go look at it. We got to take a short break from the Hospital and go look at two houses. I felt the Lord Say, "Tina you get two options and you can pick whichever one you want!" What a kind and loving Daddy to be so gracious to me even after I was selfish. We looked at both houses and realized the one in Greeley would be perfect! There was no settling; it had everything we wanted and more! So it's not just that we're moving to a new house; it's that our Heavenly Father blessed us with a wonderful Home! I hope this encourages you in whatever you're going through. Sometimes the "Weight of the Wait" makes us heavy, discouraged and frustrated; it's when we give the burden back to the Lord and let Him carry it that we can wait in His Peace.

A few Reflections...

Wow what a whirlwind of emotion these past 8 days have been. I have a moment to write while Noel is sleeping soundly in her bed in the Pediatric Intensive Care Unit. It will take awhile to fully write about all the things the Lord has put on my heart during this admission; I still haven't fully processed through everything our family has been through. For me writing is very therapeutic; it helps me put words to all the emotions I've been going through. First and foremost I have to say THANK YOU; thank you to every single one of you. My heart is so grateful for each and everyone of you. I am overwhelmed by the out-poor of support and love that has blanketed us through this rough time. Thank you for taking to the time and prayer for my sweet children, all of them; Noel, Lilly and Landen. Thank you for praying for Dustin and I to keep walking through this together. Thank you for the visits, the phone calls, the cards, the care packages, the encouraging words; we've needed every single one of these things in order to get through and to keep making it through. I'm now almost five years into this journey of raising a medically fragile girl and believe me, it doesn't get any easier. I know the routine I know the "language" to be able to communicate with the doctors; but seeing your child in pain and upset never gets any easier. Not knowing when you're going to leave the hospital and if you'll be leaving with your daughter is a constant test of Faith. Being able to continue with little sleep, sometimes no shower and no privacy is a testament of God's Grace. And to have wonderful people to help bless and care for us is proof of God's Love. The biggest thing I want to say to all of you is; "Don't sweat the small stuff," I know that's so cliche and I'm even trying to hold true to that, but it's so true. Don't let little things steal your perspective or your thoughts. Enjoy life, Christ died so that we could have life to the fullest! Not so we could complain, be frustrated, feel overwhelmed, be discouraged. His Grace is in all things, please let my family and our situation speak that to you. His Grace is sufficient for all of us, NO MATTER WHAT! I love you all so much and I have much more to say but just had to start somewhere. Have a blessed weekend,

Tina