I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, June 7, 2015

Start of Summer : Pre Baby Wait

6th birthday. Floating Balloons. Water N’ Ice Snow Cones. Swimming. Painting Walls. Wave Pool. Button Buddies. Pool Noodle Experiment. Cutting socks. Catching Barf. Summer Movies. No cavities. Silver Nitrate. Dinosaur Museum. Gravity Check. Alaskan Cousins. Cassette Players. 3 Hoses 1 Backyard. Eagles Nest. Homemade Ice Cream. Friends. Farm Fresh Chicken Eggs. Read Every Day Challenge. Grandma’s House.
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We have been able to stay happy and busy while we wait for our new sister. She puts on a show at least once daily when she is moving so much that the kids remain fascinated with her and she isn't even here yet.
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I heard about them many times, but due to some concern with the healing of his g-tube site I finally took a nurses recommendation to use "Button Buddies" for Orson's button and made some. We had been taping him up daily with gauze and paper tape and his skin was so irritated that these little button buddies have been a big relief to him. It was a really fun project and one that I hope I can use to make ample to share with others in a coming day. Button buddies are basically a washable circle shaped pad that can be washed and re-used that go around Orson's button and hook together with a snap. They are made from three layers of fabric, cotton sandwiched between two pieces of flannel, and are supposed to wick away any moisture that comes from the button and keep the button secure. The dryer it is and the less is moves the cleaner it heals. I read online of several people doing them for Eagle projects and YW projects to donate to hospitals, a really beneficial service as far as I am concerned. A neat blog called "Hopeful Threads" taught me how to do them. I have big plans for holiday themed button buddies, its going to be big.  
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We have tried a couple of experiments with the tubing at night to prevent it from wrapping around his waist and neck. I read online about threading the tubes through a cut sock on his leg and then taping the tubing to his underwear as well. That seems to help a lot. The GI doctor last week recommended we use a pool noodle cut into a foot long piece to thread his tubing through and said a lot of other families have had success with that in preventing tangles and wrapping at night. So hope has been found!
       
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Me and the kids went to my Mom's house last week and she had recently unearthed a box of cassette players/recorders that my Dad had stashed many years ago. Frank had some old cassettes still at the house so the kids think they are ultra cool listening to their cassette players. One cassette has a lot of Ozzy Osborne, but they are his softer songs so its pretty funny watching them jam out to Ozzy. I am a fan of "Old LA Tonight."
 
My Mom is magical as I have previously stated. Another layer of her magic is her backyard. Its amazing. She is a talented gardener and her yard is filled with beauty but still very playable for the kids. She is so cool in fact that she has three hoses in her backyard. That means one hose for each kid. Grandma's backyard hose parties are one of the kids favorite summer activities.
 
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Some awesome blessings that happened last week. The kids went to the dentist for their summer teeth cleaning and NO ONE HAD ANY CAVITIES! It was very exciting! We will be sending the Easter bunny an extra thank you note for the electric Star War's toothbrushes. Also one night I was up with Orson after he had finished his feed for the night. When he finished in the bathroom I had a prompting to take the trashcan into his bedroom with me from the bathroom. About a minute later he started to throw up. We caught every single drop in the garbage can! It was an incredible blessing to NOT have to clean it up off the bedding, rug, etc. Woo hoo and phew!
 
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The family was very pleased to be able to spend time with our family that lives in Alaska. We miss them so much and tried to squeeze in as many fun memories as we could with them while they were here. Including but not limited to; amazing food, FHE, lots of treats, playing dominoes, Picture-eka, Borax goo, gymnastic ring tricks, play house fun, the wave pool, Star Wars, slumber parties, hair cuts, and more!
 
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Orson had his first adventure with silver nitrate sticks and their use for helping to properly heal his button site and stop the granulation tissue. The GI doctor did it the first time (a light treatment) and the surgeon will do it next week (a much heavier treatment), then its Mom and Dad's turn to learn how to do it at home (yikes and whatever the opposite of woo hoo is, can be inserted here as well).  
 
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Our ward (neighborhood church) has given all of us the challenge to "RED - Read Every Day" this summer, and of course in hopes that it will give us all a boost to continue and/or better our current reading of The Book of Mormon. They made bookmarks with a calendar of the summer on it and the kids are really into it. I am proud of them for all being so diligent on their own to do it. Charles likes to get his done as soon as he wakes up. Orson sees him doing it and asks his brother to help him read his. Maelee sees the boys doing it and is reminded from their example to get her reading done as well. It is a neat blessing to see the power of Charles' example and the inspiration he provides to his siblings. I am grateful for The Book of Mormon and the increased spirit of peace it brings to our home as we take time to read it on our own and as a family.
 






 
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