Friday, March 22, 2013

Good news & Prayer needs...

Noel's doing ok not great though. She had a rough night on her ventilator and is not blowing off enough CO2, they're making some changes this morning to see if it helps. She did get moved to the 6th floor yesterday, but if they can't get her breathing better they'll have to take her back to ICU. please pray for her breathing to get better, also continued relief from pain.

Thursday, March 21, 2013

It's a Miracle!

I haven’t fully grasped what really happened yesterday. I was so focused on just seeing Noel when surgery was done, making sure she was ok, talking with my little girl; that the reality of how much life changed yesterday did not fully sink in. Truth is I still think it will take a while for me to grasp the miracle that took place in the operating room. I think sometimes we think of miracles as something that happens in seconds, when in reality it’s something that happens over time; when God takes the impossible and makes it possible. Before yesterday Noel’s life was definitely limited, every day she was getting worse, her organs were slowly getting crushed, her health was in jeopardy. Walking was not her number one goal in life, just being able to get out of bed each day became the goal. Now today as I look at my precious girl, asleep and free of pain for the moment, I think about her life… That she has the chance to live! Her days are not number by her poor health now. She has the potential to live a full and “normal” life (obviously the word normal is pretty subjective I just mean a life where she has the opportunity to be who God created her to be.) I would love if this surgery made it possible for Noel to walk and dance, but the truth is you can have a full life in a wheelchair. I know God has a plan to heal Noel completely, but I don’t want the events of yesterday to be overshadowed by the presence of a wheelchair in Noel’s life. God made a way for a miracle yesterday and I know it. Noel is healed!! And she will only continue to improve and accomplish more milestones! She will stand and I believe she will Walk!! I am in awe of the extravagant Love that God has for me, Noel and all of us! He loves us! He has a plan for healing and good and not for harm. He is able to do exceedingly abundantly above anything we can think imagine or dream!


We still haven’t heard Noel’s voice, but she has a lot of swelling in her throat still, I also think she needs to retrain herself to talk through her vocal cords; she has whispered her whole life and when you whisper you don’t use your vocal cords. So keep praying for that, I still believe that she is healed! Continue to pray for less pain and no infection. Thank you so much for joining us on this journey.

Wednesday, March 20, 2013

Surgery Update

Noel's surgery today went great! She is in alot of pain so you can continue to pray that will get better.  The curve in her spine went from 85 degrees to 30 degrees with this surgery (the lower the number the better!) Her heel cords have been lengthened and she'll be in casts for a month, but she should be able to stand again (something she hasn't been able to do in almost two years)! Her tonsils and adenoids have been removed; with all the swelling it's hard to tell if the vocal cord injection worked so please keep praying for her voice. Thank you to everyone who is praying and supporting us. And a big thanks to all the family and friends that we're able to be with us today, you'll never know just how much that meant. Overall all of the prayers have been heard, so keep praying!

Monday, March 11, 2013

Grace...


The Lord gently reminded me this weekend about His amazing Grace! I don’t have to fear the future; the what if’s and the unknown’s about Noel and if the surgery will “work;” I don’t even have to fear the 10 days I’ve been worried about because His Grace will be there with me. When we look at situations in our lives some things seem pretty scary and unknown, especially when we look at them through the prospective of our natural circumstances. But when we fix our eyes upon Heaven’s realities and the simple fact that God’s Grace is sufficient in ALL things than we can have complete Peace. I guess I’ve forgotten what our other hospitalization have been like, I’ve remembered the stress and worry, but forgotten the crazy grace that filled every moment of every step making it all possible. I hope you can remember this today, in all things His Grace is sufficient. Don’t look at the things in your life and fear the future; His Grace isn’t in the future, His Grace is right now. And when the unknowns of the future come, His Grace will be sufficient in those places. I hope today you can be filled with His Amazing Grace and that it brings you complete Peace.

Tina

Monday, March 4, 2013

Friends

I felt the need to write a post about how much friends mean to me. I want each of you to know what a treasure you are to me in my life. I cannot do this alone. I can’t get through the things I have to face alone. I know sometimes it may seem like I’ve got it all together and maybe you don’t know what to do for me. Just please know I don’t have it all together. There are days that I feel lonely and sad, days that I feel isolated by the fact that I have a daughter with so many needs. Some days I miss out on life cause it’s easier to stay home alone than to accomplish the task of taking Noel somewhere. It’s really hard to take Noel places; hard but not impossible. But there are times when I choose to stay home because I just can’t do it. There are times I look at other families and wonder how much different life looks for them. I wonder what I would do if I could just jump in the car and run an errand with my 2 six year olds and seven year old. The groups we may be a part of, the extra activities we’d be a part of: Girls Scouts? Basketball? Soccer? The truth is even Lily and Landen miss out on things because of Noel’s extreme needs. It’s hard to commit to get your children to an activity when you don’t even know if you can get out of the house. It’s a daily task just to get Noel out of bed. I’m sharing all of this to say, I need help. I need friends. I need people who don’t know what to do for me. I don’t even know what I need all the time, but I know I need you. I need encouragement, laughter and most of all friendship. I know how it feels when you think, “oh she must have so much support, she doesn’t need me.” I know because I have a dear friend who has thousands of people following her story, sometimes I feel like what do I have to say or do that everyone else hasn’t already done. But then I realize she does still need me and my friendship and encouragement. God brought me into her life for a reason and even though I may not understand all that she is going through and may not have any magic words, she still needs me. So yes I need you. I’ll need friends and help through this upcoming surgery and beyond. As my belly starts to grow too big to pick up Noel on my own… I will need you. When I’m tired and overcome with emotion through Noel’s surgery… I will need you. As I try to raise a new born while still taking care of all Noel’s needs… I will need you. Please don’t feel like you’ve done anything wrong or haven’t been there for me. This is more of me letting you in and giving you permission to be there for me. I don’t think anyone has done anything wrong. I just felt the need to express my heart to you, to let you know that this isn’t easy, I don’t have it all together and… I do need you.
-Tina

Tuesday, February 26, 2013

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.

Monday, January 28, 2013

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!