Fear/Anxiety

: an unpleasant often strong emotion caused by anticipation or awareness of danger


Obviously it’s normal for us to have some fear or anxiety when our children are going to be in the midst of danger. However I don’t want Fear to consume my thoughts, control my actions or play with my emotions. I’m going to share my heart with you so you know how to better pray for me and just to share this journey with you from the inside out; it’s very therapeutic to be able to write about what we’re going through.

There are the obvious things that you would look at in our situation and see where fear could come in; the fact that Noel is having major surgery. Things like complications in surgery, infection after and the possible chance that she may not make it through. I have thought about these things, but that is honestly not where most of my fear lies. I believe that God’s grace is sufficient in all things, I believe that He has a plan for Noel, I believe she will be safe and make it thorough surgery great.

The places I have fear are in being in a Hospital for 10 or more days. Once I walked into and Emergency Room with Noel thinking that she needed some Oxygen and we’d be home that night; little did I know we would live in the Hospital for the next 4 months. Life went on normally for everyone around me; my life stopped. My life was filled with Nurses, Doctors, Therapists, Social Workers, and sadly not with friends, dinner parties, family outings, Church services. (I do have a truly amazing friend Kat who did come to be with Noel and I, just to hang out, laugh with, cry with, be with. Thank you so much Kat!) So honestly that’s one source where fear has crept in, in thinking my life may stop again, in not knowing how long we may or may not be in the Hospital.

I have had anxiety in the fact that our family will be split apart during the time after her surgery; Noel can’t have visitors under 12 years old not even her brother and sister. It’s hard to parent when your kids are in two different places. Thankfully my mother in-law and sister in-law will be able to be with Land L the whole time. Any time you have a sick child it takes a toll on a marriage; it only gets intensified when you add surgery, no alone time, no privacy and all the added stress and emotions.

And if I’m being really honest one of my biggest fears is what if this surgery doesn’t fix her? What if Noel can’t get back to walking? We found out that they will be doing vocal cord surgery in addition to her back surgery; if it’s successful then she will be able to talk. But what if her vocal cord surgery doesn’t work and she still can’t be heard?

I know the God I serve is not a “what if God,” but I also know that I am human and I am weak at times. When I am weak and when I allow it to be expressed then He has an opportunity to be Strong. So please join me in praying against these Mother’s fears, any fear that Noel may have and any fears the rest of our family may have about this surgery.

Please Pray

I'm going to ask all of you to join me in praying every day for Noel. She will undergo major surgery on March 20th for her scoliosis. During this surgery the Surgeon will place two titanium rods in her spine to help straighten out her curve. Noel's last x-ray showed that she has 2 curves, one is 60% and the other is 80% (the higher the number the worse the curve.) The surgery will be at the least 5 hours and she will stay in the Hospital at least 10 days. I would like prayer to cover every aspect of this surgery, down to the nurse's and CNA's that will be taking care of Noel. I will write a list of specific things that we want prayer for. She also needs prayer that her lungs will stay healthy until her surgery as you can imagine with her back being so curved it affects all of her internal organs. This is going to be a major event in the lives of our whole family, (Lily and Landen won't even be able to be in her hospital room because of the strict visitation policy) it will be another leap of Faith but we are really hoping and praying that this will help Noel be completely HEALED!

Thankfulness and Hope…

Wow there's so much to update you on. Let me start with the best news first, it has been 1 year and 2 months since Noel has been sick and in a Hospital!! Praise the Lord! I'm so thankful for this year of life outside of the walls of a Hospital; for swimming this summer instead of I.V.'s for camping instead of X-rays for Joy instead of tears! For the most part she is doing great! And in some other very exciting news; we are buying a house that is wheelchair accessible. When we first moved into our rental house a year ago Noel was walking; sadly because of her Scoliosis she has lost the ability to walk for now and she uses an electric wheel chair full time. Obliviously we had no idea that in a years' time we would need a house with ramps and wider doorways; but God did. We are set to move sometime in December. Our Landlords have graciously let us got out of our lease early and I would ask you to pray for someone to rent their house quickly. Noel received a Make a Wish trip in May which she wished to go to Disney World; the happiest place on earth! We all had an amazing time; make a wish is such an amazing organization that really treats the whole family like royalty. Noel is in Kindergarten! I can't believe she'll be six years old this month, where did the time go?
So on to some needs we have; first and foremost we need prayer. Every prayer prayed for Noel takes her one step closer to her complete healing. Noel will have an appointment on November 27^th to see if she's a candidate to get VEPTR Rods which could stop and even fix her scoliosis. It would be a major surgery with several follow up surgeries, but this could give her so much life back. She also has an appointment to see an Ears Nose and Throat Doctor to look at her vocal cords; Noel has never been able to talk louder than a whisper and up until now the doctors always attributed it to her Muscular Dystrophy, but I think they're may be something wrong with her vocal cords and there may be something they can do to fix them. I am so hopeful that these two appointments could be the bridge to her healing! The other thing we need prayer for is the finances to buy a wheelchair stair lift for our new house. We are so excited that the house is already wheelchair accessible, the only part that isn't accessible it the basement. We want Noel to have complete freedom in our home, we want her to be able to get to every room of the house; it's a pretty simple request that our daughter can live and play in her own home. The problem is that a wheelchair lift is expensive; I was quoted a price of $17,000. Wow! Only a small chunk of change, right? It's really disheartening that things that give people freedom and mobility can be so expensive. From what I know insurance will not pay for something like this. I know that God is bigger than the money; I know that God has given us this home and I know that he has a way for us to give the gift of freedom to Noel. Thank you so much for your continued love and prayers and I will update you on the results of her appointments.
Tina

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