Posts Tagged ‘CHOP’
- In: Caring Bridge | Children | Family | Illness | storms of life | Uncategorized
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Annalise and I 4 days before she was hospitalized
I read a daily devotional a few days ago in a best of Our Daily Bread book, that really struck me. I wanted to find it online to post and have not had luck so bear with me as I summarize the story. There is a ship out at sea and it runs into heavy storms and high seas and is capsized, but rights itself, though it sustained significant damage. A coast guard cutter ship comes to help but is not able to get close enough to rescue the people on board because of the stormy seas, so the cutter pulls alongside the damaged boat and positions itself in front so that it takes the brunt of the storm, of the waves that would otherwise pound against the damaged ship. That is what God does for us when we go through the storms of life. I have really wondered a lot over the past year about how people get through difficult times without having the hope that God gives me. I know that during the storms of my life, God has been the cutter protecting me from the worst and getting me through and escorting me safely back. It doesn’t make the storms fun, or something I look forward to, but I know I am refined by them and that God is with me. When our daughter, Annalise, was in the hospital last year for 18 weeks, I had some talks with God about the storms and the ship out at sea. At the time, I had not read the devotional previously mentioned but I kept remembering the story in the new testament gospels where Jesus is in the boat with the disciples and he is sound asleep. A terrible storm has come up and they are afraid and the boat is being tossed around. They wake Jesus up and ask if he doesn’t care about what is happening to them?! I had those same conversations with God, “God, I know you are here but why won’t you wake up and calm this storm, heal my child, give us a diagnosis, let us go home and be with our other daughter, Help, Help, Help!” On Oct 6, Ananlise came home from the hospital, finally the storm had subsided, but it had taken its toll on all of us, here is a picture of Annalise the day she came home from the hospital, look at the difference after 18 weeks in the hospital and not eating for 14 of those weeks.
Annalise with her Gaga the day she finally came home
God delivered us through that storm, but we were all still battered from it. I now think of it somewhat like the stones you find on the seashore, how smooth they are after being tumbled by the waves, against the grains of sand, an abrasive action that smoothes off the rough edges. Even though I questioned God and his motives, his plan and why he would put our two daughters through that, I always knew he was there. I always knew that He loved Annalise more than even we did and that he plans for her, for all of us, plans to prosper us, not to harm us. Though, these plans could have included calling her home to heaven for her healing. I am so thankful beyond words that He chose to give us more time with her here and even to heal her! I pray I never take that for granted. Annalise was battered when she came home, but kids are so resilient, here is a photo of her 5 weeks after she came home, what an amazing recovery.
5 weeks post hospitalization, with her big sister
If you or someone you know is going through a storm in life, cling to God. If you don’t know how or what that means, please post a comment and let me know if you don’t want it published and I will respond to you. “The Lord your God is with you, He is mighty to save, He will take great delight in you, He will calm you with His love, he will rejoice over you with singing” Zep 3:17
If you would like to read about other families battling illness in a child, I would point you to this link for a friend of mine’s story about her daughter Charlotte and she also has links to many other families. I believe this can inspire you and let you know you are not alone. http://jenntousey.blogspot.com/2008/02/baby-girl-tousey.html
Please feel free to share your stories of the storms you have or are experiencing.
- In: Children | Illness | Uncategorized
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I guess the way I ended up with a blog began on June 12, 2008. My youngest daughter, Annalise, entered the hospital that day for what would be an 18 week hospitalization, including 3 hospitals. To keep family and friends posted, and to decompress and process everything at the end of the day, I began writing a CaringBridge site for Annalise. I found the process of writing down the days events and my feelings, very cathartic. I also received positive feedback from others, so here is my continuation of that process, but not limited to Annalise’s illness.
Just a bit about that journey, for the first 11 weeks, she was undiagnosed, or rather, there was a “possible” diagnosis almost every day. On Aug 19, 2008 we were transferred to the Children’s Hospital of Philadelphia (CHOP). Annalise was diagnosed with Hyperinsulinism, also called Congenital Hyperinsulinism, and various other names but all meaning she had chronic, uncontrolled hypoglycemia. We were blessed that she had what is called Focal instead of Diffuse disease. On Sept 11, with the help of an 18 F dopa assisted PET scan, the area of islet cells was located in the tail of her pancreas. On Sept 18, God worked through the hands of an amazing surgeon, Dr Adzick, who removed 2% of her pancreas, the smallest section ever removed I believe. This, we believe, cured her.
During this time and the time following it, I believe I have learned some things that may be helpful to share with others such as:
- not being afraid to be the patient’s advocate, ie asking lots of questions and pushing doctors and other health care providers to provide the best possible care
- working with and fighting insurance companies to get appropriate care and testing and transportation covered
- navigating the tax implications of huge medical expenses, greater than 7.5% of Adjusted Gross Income
- living at Ronald McDonald house
- trying to keep a family together
- relying on the blessings of others, the hands and feet of the body of Christ, to get through
- knowing what you can do for someone when they are in this situation
- reaching out to others with sick children
- trusting God, even when it seems like he is asleep in the boat
So, with this I start this blog which will include the above as well as all the other glorious challenges and blessings of motherhood. Read the rest of this entry »
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