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Annalise and I 4 days before she was hospitalized

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

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

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.

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Please read this article if you are concerned about what is happening to our children and their education. This is scary and sad, another reason I believe we will be Homeschooling our children.

Perspective: It’s time for us to fly, Christian teachers (OneNewsNow.com)

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Is this safe for our little one's?

Is this safe for our little one's?

Becoming a mom has transformed me into a “green”,  healthy, and frugal person that I don’t even recognize. My husband (of almost 5 years), a biologist, shakes his head in disbelief, but, I think, in a good way. 🙂  Having had a chronically ill child has really opened my eyes to the impact our environment and what we put into our body, on our body, in our house, etc has on us and our vulnerable, developing children.  One of the hot topics about a year and half ago was BPA and it use in sippy cups and other disposable type products. That topic is resurfacing as it seems Coke and some other big manufacturers are trying to cover up the inherent risks in these products, rather than incur the cost and hassle of changing the containers they use for their products. But I digress, as I have researched the BPA and other harmful environmental contaminants, I discovered an organization that has been very useful for me, it is called Environmental Working Group at  http://www.ewg.org (sorry I can’t figure out how to add a hyperlink, feel free to advise). Recently they tested 1611 sunscreens and found 3 of 5 either contain hazardous chemicals or don’t protect as they claim. I hate to over-react, but as I am currently following 7 Caring Bridge sites, I can’t help but wonder where all these mystery diseases and cancers come from. I know our ability to detect and diagnose diseases has improved, but I don’t really believe these cancers, insulinomas, and mystery diseases have always been around. Actually, we know they have not always been around, reference your bible, until Genesis 3 where sin entered the picture, there was no disease. If you read through Genesis (http://www.biblegateway.com), you will see that the life expectancy is progressively reduced and that seems to have continued. It saddens and surprises me to contemplate the number of children under 5, who I have met or been connected with and praying for over the past 2 years. So, my intent is not to incite fear, but just caution, lets take a look at what we put into and rub all over our kid’s bodies (and our own). This site has also developed a great shopping guide (http://www.foodnews.org) that ranked a total of 47 different fruits and vegetables as far as pesticide load, this is a great tool to print out and take to the grocery store and help you decide when it is worth the money to buy organic. For instance, the “Dirty Dozen”, the ones with the worst pesticide load: #1 peaches, #2  apple, #3 bell pepper #4 celery #5 nectarine #6 strawberries … Tell me what you think and have a blessed day!

My friend Alisa suggested I share my fruit smoothie recipe so here it is. Great as a meal or for a snack.

10 oz yogurt or kefir, plain or vanilla, (I do not use lowfat or skim, but this is personal preference)

1 Tbsp raw organic coconut oil (this makes it taste like a Pina Colada)

1 Tbsp flax seed oil

1 Whole raw high omega 3 egg (optional, but good for protein)

1-2 Cups fresh or frozen fruit (if fresh, add some ice to thicken smoothie)

1 Tbsp raw organic unheated honey

Dump all contents into a blender, mix and enjoy.

This recipe is adapted from The Maker’s Diet by Jordan Rubin, If you are interested in healthy, non processed, natural eating as I believe God intended, I would highly suggest the book Nourishing Traditions by Sally Fallon.(http://newtrendspublishing.com/SallyFallon/index.html) Each page contains, in addition to a recipe, education and information about food and preparation and health. It is a fascinating read. Many of the ingredients are best found through local food co-ops and the Health Food grocery stores such as Whole Foods, Earth Fare and locally in Raleigh, Harmony Foods.

After my younger daughter’s long hospitalization and illness, I began a quest for ways to improve our family’s health. This lead me to these resources and include changes like not buying processed foods, shopping mainly the perimeter of the grocery store and not the aisles, grinding grain and making most of our bread at home, soaking grains and nuts and oatmeal before using and other techniques our ancestors used. I will share more of this in upcoming posts, email me or post a comment if there is something in particular you are interested in along these lines. Keep in mind that I am fairly new to this so you can learn along side me.

If you have other recipes or resources along these lines, please share here and I will post for the readers.

Thanks for reading and for your comments and suggestions.

My Blessings

As promised yesterday, here is a list of what you can do for someone who has a chronically ill child or a child with a long hospitalization.Most of this list was derived from what people did for me and our family. Some things cost nothing, some are expensive, some take a little time, some take a lot, figure out what you are willing to do/give and go from there.

pray, for them and with them

clean their house, yes I mean scrub the toilets, or pay for and send over a cleaning company

bring a meal, or a milkshake, or muchies

mow the grass

get an ipod, load it with their favorite music, kids music, instrumentals for sleep time, inspirational messages

go visit, don’t expect to be entertained, or even talked to but go and sit, hold the child, hold the parent, just be there

organize a fund raiser, but don’t let them know about it

send care packages

bring an area rug to put on the floor in the hospital room for play time

maintenance at their home, power washing, planting flowers, trimming shrubs

take mom for a haircut (or bring someone to the hospital to do it there), manicure, pedicure, etc

if appropriate, bring playmates to visit

bring sidewalk chalk, bubbles, Wii, books, toys, videos, art/craft supplies

make a hospital survival kit for parents: ear plugs, eye mask, fleece blanket, snacks, pillow, toiletries

do laundry

pick up things from their home and bring to them

help them do research

find out about local resources

bring an air mattress to them

help with other children

make a photo collage for the child of their family and friends to hang in the room or on the bed

decorate the hospital room

give them gift cards for the cafeteria or restaurants close by

send them a card

bring fresh flowers

pray

We were so blessed by friends, family, even strangers who carried us through. Let me share an example, though all of the above are examples, this is priceless. Our youngest (15 months) had been in the hospital locally for 10 weeks, we were about to fly from NC to PA for a more specialized hospital and our oldest was about to turn 3. My dear friends handled the birthday party, suggested a location, made party favors, made invitations, bought supplies, picked up the cake, sat with the one in the hospital so we could all attend, brought the food, EVERY detail was handled. I still cry when I think about how my friends made that birthday party possible, and wonderful.

Please don’t send a text message, email or voicemail to say “hey, I  am thinking about you”, go and do something.

If you have other ideas, please post them and I will compile them.

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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An Inspirational Storm Story: Charlotte Ruth

http://jenntousey.blogspot.com/2008/02/baby-girl-tousey.html

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