Tuesday, July 28, 2009

HOPE, it is good for my heart, challenging for my head!!!

I know this update is later than most, but I have been waiting for things to steady out a bit. Last week was FULL of it's ups and downs and my heart clung to Hope, but my head was uncertain of what to hold to, it questioned so much of this process and resigned to a less abundant place. Not Hope, but uncertainity. God as always showed up in my life and realigned TRUTH in there. God never fails to amaze and provide and I want to thank all of my friends and family that have been an extension of that in providing financially this last week for us, thank you!!! To all of our friends and family that are praying and continuing to walk this road with us, thank you for your faithful and fervent love. Hope comes in these times because of all of you!!!

Let me begin with updating you on Mike and flow down the list, Mike had to return last week, just in the mornings, but we were uncertain what they were going to expect of him. His Sergeant has shown great favor on him and has just as of today allowed him to only come for the morning exercise and call to check in twice a day, which is AMAZINGLY kind of her. He will hopefully be able to begin school agin in September and finish around September of next year, this is all pending on the length of Phoenix's recovery. He is able to be here with me and right now we are able to go to the hospital once a day together. He is handling life well, he misses his friends and home. He is Superman I swear, he does a great job of balancing all that is on his plate. I am so thankful for his love, friendship and strength in my life.

Jon is still living with us and was working 40 hours a week while my Mom was here and is preparing for a two week vacation with some great friends, he deserves it, he has been such a blessing to us. Mike and I are constantly amazed by his love and ability to care for Rowan and help us through this season with all his serving, what a treasure he is to us as a family. Good old uncle Jon!!!

Rowan is a super star, last week was one of his hardest, we are breaking him of some temper tantrums and learning to move into a new stage of redirection and firmness with him. Even in his hard moments he is a complete JOY and gift to us. We feel so thankful and honored that God entrusted such a strong and compassionate little boy to us and amazed at how much he grows daily.He loves book, wiggles, the pool, granny time (he would wake her up every morning around 8 to hang out), he doesn't wake up for us until 930 or 10, hanging with his papa and uncle Jon, the park, five guys french fries only, we haven't recruited his taste buds to cheeseburgers yet =)and procrastinating bedtime by asking to snuggle ("which we love as much as him).

As for me, I am doing one day at a time, these days all run together. Between 2 trips a day to the hospital and planning my day around pumping and phoenix's feeding times,dr.'s bedside appointments and time for Rowan and Mike, the days fly by. My Mom left on Monday, having her was wonderful and seemed unnatural to say goodbye, as if she was meant to be here forever. It was hard for both of us to say goodbye and we miss her deeply already,she is such an amazing, grannie, friend, housekeeper and shield of hope and faith for us. That has meant trips alone at night to the hospital which has been fine for now, just a new experience, as for the last three weeks her or mike have been with me for each trip.

A couple weeks back we met another couple here at the hospital whose baby was in the NICU as well, and they have quickly become astrong part of our life and a gift from God. Their names are Mel and Wendy, they have been a rich blessing to us and we have become fast friends with them, the type that you feel you've known all your life. They introduced us to their church and we love it, met with the pastor this week he came to the hospital to meet and pray for Phoenix and we spent a couple hours together, he is a strong,passionate and encouraging mand and we feel so thankful to have found a place among these people, the timing of God is perfect for us, eventhough it doesn't look it all the time. I am thankful that slowly life seems to be taking a more consistent shape,I find myself grasping for control or some semblance of a normal life and then again come back to a place of relinquishing control and TRUSTING and HOPING in God alone and his plan. His Plans look nothing like mine would and so it takes looking to him and not at these circumstances to stand daily and face it all.

Phoenix, as I write this is in surgery, hopefully this will be the last one for a few months. It is to cover over the opening in his back, a skin graphing, though it is an easier surgery than the last it has been so heartwrenching for me. I love and ache for him more and more each day, it seems so impossible all that he has to face in this life, but I am so thankful that he is here and we will walk beside him through it all. Knowing and clinging to all these roads having great purpose in all that his life is about and the strength it will bring to us as a family. He is so strong and beautiful, I have learned so much from his little life already. I find myself praying for specific issues, that I would never think about with a healthy baby. Phoenix little knees were locked when born since he has no use of his legs, they have loosened with phyical therapy, but the are still straight and stiff and we so desire for them to have movement and bend with time, so that he can sit like a regular child. Also, his hips are dislocated and they as well have loosened but the surgery to help with this has little to no lasting results because he can't use them, so they tend to return to the dislocated position, please pray that we would see change and progress here, they believe there is little to no pain for him in his hips, which seriously is my saving grace. Physical therapists and DR.s do continue to say what great progress he is making and that they are impressed with his great disposition and strength through it all. Our Little Trooper!!!

We have been told at this point in best case scenario, if all goes well, Phoenix culd come home with us as early as 2 weeks from now. We have learned not to cling to these things since everyday it can change. Two major areas that would prolong the process is infection and /or his breathing issues, they are hoping they will resolve themselves with time and him being moved from the "special bed" he is currently in. Last week his shunt, in his head sprung a little leak and they restiched it and are hoping that all was resealed with that. On Mondays he has a head ulrtrasound and many other labs and everything looked great, that was so encouraging after a hard weekend.

Alright that is all for now. Love to you all and thank you for all your love, support, prayers and encouragement, we could not make it through this without you all by our side.

2 comments:

  1. Hang in there, Meg! You are doing an amazing job! We will continue to pray for Phoenix and your whole family! Love you loads!!

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  2. Oh Megan! My prayers are with u, Phoenix, and your family. Thank you for your updates! I hope this surgery goes well for him.

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