"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Thursday, May 31, 2012

Not a Fan!



I am reading Not a Fan and let me tell you it is an amazing book so far. It got me thinking. One part of the book the author Kyle talks about a guy who is leaving the church because he feels like Kyles sermons interfer with his life. And Kyles says " do you hear what he is saying? - I believe in Jesus, I'm a big fan, don't ask me to follow. I don't mind going to church on the weekends. I'll pray before meals. I'll even slap a Jesus sticker on the back of my car but i don't want Jesus to interfere with my life."
I started thinking. About adoption as usual. Hey its where my treasure is so my heart is there too :-) I was talking to someone, a Christian, about our adoption and the look this person gave me was of disgust and disappointment. I was angry, hurt and disappointed. My eyes were open to the plight of the orphan years ago and since then we have left our family in God's hands. I didn't wake up one morning and say "we should totally have 10 kids most of which special needs! That will not only get me attention but also notority."
No! What happened was a few years ago Paul and I simply said "yes Lord. I will go."
We decided we were not content anymore simply being fans of Jesus we wanted to follow Him wholly and completely. Everyday I pray that I would not just be a fan. I pray that my life would be a living testimony to the love, forgiveness and grace our Jesus Christ. I pray that everyday I live so that people will forget me and only remember Jesus. I fail daily. But I keep praying and I keep trying.
I was thinking about what God is doing in this stage of our life. Far more than I am allowed to blog about right now. More and more people think I am crazy. Somedays I believe it. Somedays doubt creeps in and I think they are right, how can I handle, afford, love, take care of all these children. Those days are usually come after talking with well meaning people who disagree with my lifestyle and want to make that known. Bless their hearts.
When that happens my friends voice comes in and reminds me that Jesus did not come so I can have starbucks and have it more abundantly. This not a fan book ask a very good question, do I carry my cross daily? Have I suffered in the name of Jesus? Am I a fan or a follower? My honest answer is I feel like I have not suffered or carry my cross. Today I pray I will.
So when people come in and call me crazy and put me down or tell me my children are suffering because of my lifestyle I will chose to remember I am not of this world. I did not come to be a fan and cheer when life is good and find a new team when I'm on a losing streak. I did not come to have starbucks and have it more abundantly. Jesus died for me to live and I need to make that mean something.
Matthew 18:5 says And whoever welcomes a little child like this in my name welcomes me.
Also
Matthew 25
I tell you the truth my brothers whatever you did not do to the least of these you did not do to me.


I am not a fan of Jesus....are you?

Be blessed

Tuesday, May 29, 2012

2 years home!

Oh how I love Gotcha day!! Gotcha day means that I have a son. That I was given the greatest gift anyone could ever give me. Noah is everything I ever wanted and more than I ever dreamed. We got him at 3 months olds not able to do anything. His hands clenched in fists and laying at his head unable to lay by his sides. He was basically a newborn. We were told he would be a vegetable, he would not live long. We came home to 25 specialists. We spent 4 days a week every week at Children's Hospital of Pittsburgh.

We learned his heart was good. He was severely delayed, no clue on his future, a hyperactive gag, a sub mucus cleft palate making us have one more specialist we then needed to see, no suck, possible swallowing problem, reflux. We were introduced to ECI and had PT, OT, NT, DV and another specialist they could give us. 2x a week each therapy every week. Then the vomit started and the eating by mouth stopped. A gtube was given and we now were thrown into the medical supply company world. IV poles, feed bags, tubes, extensions, ferral valves, gauze and groovy tubies.

Most days early on I felt like his nurse. Bonding was not immediate like I thought. I was terrified most days I would wake up and he would no longer be with us. I was scared he would never know I was his mom. After the gtube more vomit came. 10x a day at least and always like 10 oz or more. It was hard. Really really hard. After taking a vacation with him and spending days in the hospital sitting and praying by his side I knew not only did I like him, I loved him and would die for him. We were bonded for life. From then on we were inseparable.

Things didnt get easier medically. He still needed to see doctors almost daily, therapy was still 2x a week but with all the therapist it was more like 4x a week and some days he had therapy 4 hours of more. Soon the nurses came. That was....an experience. We will leave it at that. Wonderful friends helped me pick the right nurses and fire the wrong ones. Boy were there a lot of wrong ones.

Every holiday was spent in the hospital. His first Christmas was the worst. He was hospitalized Christmas day  and we were told to take his gtube out and just "let him go". They say it as if it is the right thing to do. They say it with no emotion as if they were speaking of the weather. They say it is because they never have met a trisomy 8 adult. So I am suppose to starve my littlest love to death because it will be harder if he dies on his own later in life. That was the worst time in my life. We didnt listen, we prayed, hundreds if not thousands of people circled my love in prayer and he recovered.

The day before his first birthday the doctors wanted him to have major surgery to take his esophagus detatch it from his stomach and put it somewhere else.  He would never eat by mouth ever. Never would he enjoy his birthday cake, or the cold feeling of ice cream, he would never sit down with his family to have a meal, he would never be able to eat his wedding cake. I refused.

Our adoption was finalized and we moved to Texas. God healed Noah of pretty much everything. I wouldnt be surprised if we got another genetic test and it said his Trisomy 8 was gone, impossible but not for God.
Now he eats everything in site, he laughs, he makes truck sounds, he calls for his dad, he smacks his sisters, gives kisses, loves dogs and trucks and planes he is a typical 2 year old boy. He is loved and adored by all who meet him.

2 years. I can't believe its been that long and yet I cant believe at one time he wasnt here in my arms. You know I read a quote that says You havent lived until you have done something for someone who can not repay you. His birthmom did just that. As much as I want to repay her and make it all okay for her I can not.  So I will pray for her that God blesses her.

So 2 years later we celebrate while one mother mourns. Adoption always comes at a price. So celebrate with us and pray with us for his birthmama. Thank you for carrying us through the last two years. We are so grateful.

                                                                       Chosen



Be blessed

Tuesday, May 22, 2012

URGENT PRAYER

Please pray for my friend and her family this is what she writes : 




all onco families know what I am talking about when you know in your gut the day after MRI when you hear your oncologists voice on the other end of the phone. We got the call today from Doc Taylor. Aunnah's MRI grew slightly again and they reported that her brain was larger than her skull..not sure what that means but he assured me that he is not worried right now too much about Aunnah's report but then the but came in. He said Michaela's MRI showed quite a bit of growth and more enhancement of the brain stem tumor. He is very concerned with the findings on this MRI. He and all the others are going to make calls and regroup. They think it's time to bring in radiation and/or chemo..they are also calling in the neuro surgeons on this too but he feels they will not want to even touch it cause where this tumor is...it's so deep within the brain. He said to give them a few days and then we will know more of what the treatments are going to be. So again our lives are in the air. It was a rough time when I got off of the phone. Lots of tears...I feel like I just got a blow in the gut. Michaela said on the way home yesterday that she did not feel good about this MRI..she knows her body and how she has been feeing lately. I feel like our family is in such chaos but again we will put our trust and faith in God to see us through yet another type of treatment. She's already had 11 different chemos. Thank you all for your continued prayers and support...we sure will need them even more within the future. - Andrea Lynn Nagel ♥ 


Be blessed

Thursday, May 10, 2012

Noah's Ear Tubes

This morning I got up at 4am and got ready to take Noah to get his new ear tubes. Surgery was set for 730am but we had to be there by 6. Leaving at 5am I still didn't arrive until about 610am. I got him in his gown and covered him with a blanket and rocked him. He was almost asleep when they brought in the giggle medicine. I gave it to him and he just laid back and relaxed even more.



Right before they took him back he was laughing and laughing it was so cute. A nurse came in and carried him to the OR.
The surgery was suppose to be like an hour total. First the ear tubes, then the doctor would come out and talk to me. That part would take a couple minutes. The hearing test would take longer. So I waited. While I waited I was reading Lorraine Patterson's book about her daughter Chrissie. A must read. Then I started to get worried because it had been 30 mins, then 45 then an hour. All the while I am reading a bok about a little girl's heroic fight to boss her heart. So now its been over an hour and I am just imagining the doctor doing chest compressions on Noah or walking toward me with his head hung low. I'm praying and praying and a nurse walked by and I ask about Noah. She said she would call the OR. Then she went down the hall. Another 15 minutes..... Another nurse walked by...She could tell I was worried I guess because she said as a mom she would be worried to and thats why she went right back to the OR to see what was going on.  She didnt tell me what the hold up was but she did say he was perfect.

Thank you Lord. I don't want to be in that one club...you know the one. The one no one wants to be in. I couldn't bare it.  So the whole thing took about 90 mins I think. The doctor came in and said the left ear was clogged he took wax and skin cells out and then removed the very clogged tube. He said behind the tube was a lot of mucus so he suctioned that all out and replaced the tube. Then he went to the right ear which was fine, no mucus or anything. He replaced that tube as well.

After that they did the hearing test. The reason the doctor didnt come out to talk to me was he was watching them do the hearing test. What he told me next I honestly never in my wildest dreams imagined. "Your son has mild hearing loss." 
Shock! What? What does that mean? It means we schedule another hearing test to confirm and then fit him for hearing aides. 

I scheduled the appointments and then Noah came wheeling in. Apparently he wanted to keep the mask they use to put him under and persuaded the staff to oblige him.


They said he would be cranky but he wasnt. He was fine. He had to drink apple juice in order to leave and he did but threw it right up. My poor boy. 

So right now we don't know anything. Does he hear me? How much? He dances so he must hear music, how loud do I have to be? Next test is 5/21 at 2 and then see the dr at 3. Some people were really upset for us, but I am not. I know ASL, need a refresher but still know it, he is healthy and alive. I don't care if he has to wear hearing aides to hear. I just am grateful I get to keep my baby. Everything else is minor.

Be blessed

Tuesday, May 8, 2012

Getting closer

Noah has his surgery in a few days. I am in serious denial. I have never been like this before. I think it has to do with the fact that we have been out of the hospital for over a year now and he is older. I don't know if he will scream or cry or look at me like I am betraying him.

I have to register him online for his surgery. Then they will call us with the time. They are thinking it will be 630 am. So fun since I had to pick the hospital the furthest away from our home. Me plus 5 kids up at 4am to get out the door. Fun times.

Please keep us in your prayers. Pray for Noah that he will have a speedy recovery, no pain and be able to hear better. Pray for the doctors, that they come to the hospital rested and ready. That they look at our boy as a boy and not a DX. Pray for safety for us on the way to and from the hospital.

Thanks
Be blessed