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.
Tuesday, March 31, 2015
"Cover Them Up" He Said?
Sunday, March 29, 2015
“Peace Be Still” When I Needed It : The Male Nurse
Saturday, March 28, 2015
Charlie-Bots are Ready!
Thursday, March 26, 2015
The Canine Mother We Never Knew We Always Wanted
Wednesday, March 25, 2015
Twinkle Twinkle Little Vest
One of the first things we learned when Maelee was diagnosed was the importance of CPT (chest percussion therapy). Our PCH team taught us how to do manual "clapping" in 8 different places on Maelee's lungs that were target zones for getting the thick CF mucus unstuck. They also taught us that you need to be careful when you do it an to get your hands placed in just the right position so as to prevent hurting the baby's other vital organs - since essentially you are hitting your kid in 8 different places in an attempt to loosen the mucus.
It is another layer of the baby routine that you need to add in at infancy and get it in hopefully twice for a day for 10-20 minutes - along with the regular feedings, changings, naps, etc that come with a every baby.
So babies love to be turned in all kinds of strange positions and have their parents "clap" them with their hand over and over again right? No of course it wasn't fun for either of us. But we also learned that when she got big enough we could get a CPT vest for her that would do the percussion. Then when she gets even older there are other devices that she can use when she is able to be coordinated enough since they require a special way of breath intake.
She was 3 when we were able to get her vest. At that time in 2010 we were told that the price of the vest was approximately $15,800. Our portion after insurance (thank heavens for insurance) was about $5,000. We were able to get the vest from an excellent company based out of Minnesota. We had been anticipating getting one for a long time so it was a huge deal.
As I started talking with the representatives at the company I was thrilled to hear the sound of their Minnesota accent. My little brother was serving a mission in Minnesota at the time for our church and we hadn't seen him in a long time. Every time I talked to the vest people, as things got arranged for payment and delivery, on the phone I thought of him and the people he was serving and living around in Minnesota that sounded like the people working at the vest company.
A representative from the vest company came to our house when the long anticipated package arrived so that she could show us how to set it up and use it. We tried to really fire Maelee up about it because we wanted it to be a successful process for her.
The woman from the company came over and won Maelee over with an adorable teddy bear that could sit with her while she did her vest. She was such a lovely woman and happened to have a young boy of her own with CF who used the same vest.
Maelee's first order of business was to see how awesome her voice sounded while the vest was on. It has the same effect of talking into a portable floor fan, that seems to chop the sound of your voice into pieces. The vest lady adjusted Maelee's straps, got the vest all set up, and then turned it on. Frank and I were on the edge of our parenting seats to see how she would react. We hoped she didn't cry or say that it hurt. We knew this would be a huge essential part of taking care of her body and had prayed for it to be a success.
The motor started and Maelee started to shake and then she started to belt out "Twinkle twinkle little star," to see how she sounded. It was awesome. She still has the teddy bear that the woman gave her and its a treasure to her still. There have been many days when getting the vest done was a fight, but mostly it has been something that is accepted as part of the routine and necessary. She has started to notice a difference in how she feels if there is a weekend day skipped from the vest and knows she needs it.
Orson was able to get his when he was 8 months old. The most amazing blessing for him in his vest, and in all he does with his CF is that he has Maelee to blaze the trail for him. He doesn't remember a time when the vest wasn't a part of his life and he has a buddy to sit and do it with. Sometimes it bothers him still and asks for Frank or I to sit by him closer or hold his hand when he does it. It is actually a pretty special part of the day because its a mandatory "holding still" 30 minutes when all the kids are together. We are very thankful for the blessing of our CPT vests and know that using them everyday is so important to the maintenance of the disease.
Tuesday, March 24, 2015
What is Cystic Fibrosis - an explanation by the Adams kids
An Amazing Turn Out for Waffle Love!
Monday, March 23, 2015
A Quieter Hobby : The 2015 t-shirt design CF Is Not Forever
But it turns out that my kids didn't appreciate my hobby of sewing because it was really loud. I would sew during their afternoon movie and wouldn't let them turn it up as loud as they wanted.
I have painted the main walls of my front room enough times over the past 8 years that one of Frank's friends who has been over enough to see all of the different paint said, "Hey I think you guys will be safe if there is a nuclear bomb dropped near your place, with all the of layers of paint you have surrounding you." So to sum up, I ran out of wall space to paint.
I needed a quieter hobby and started drawing and hand lettering more. It was really fun and Frank said I am always in a good mood when I have taken the time to work on my hand lettering projects throughout the day.
The design for the CF Is Not Forever t-shirt will be the same as the one below in the grid, only a purple outline of the design on a white shirt, available at the April 11th event. It will be a very cute shirt and I will post pictures when the order comes in the mail.
I finished this week a Young Women Value's poster and have re-done a My Gospel Standards poster that I had another version of last year. This one is way better. We will be selling these for the fundraiser as well.
Sunday, March 22, 2015
How My Before and After Addiction Makes Me Feel Close to God : the Dolls are Finished!
I am addicted to the before and after. I wasn’t able to explain it on my own, why I liked “projects” so much and why the process of doing and finishing them gave me comfort, but Dieter Uchtdorf was able to explain it.
The idea of the fundraiser was brought to my mind and also specific things I could help the kids to make. Then I walked through my bedroom and saw a pile of fabric I had cleaned out of my closet a few weeks before sitting in a nice little pile outside of my closet (my bedroom is unfortunately always the last on my list to be beautified). BONANZA! My mind saw the pile of prints transformed into dolls I could make to represent Ruby in the fundraiser. I HAD SOMETHING TO CREATE! I was going to feel better soon! Hope returned and my heart was singing!
Here is a link to the complete talk by President Uchtdorf:
Friday, March 20, 2015
Library Breakthrough
Plus I realized that the potential of germs at the library and from the books was manageable – it was a huge breakthrough for me. I remained obnoxious about washing hands and still am today BUT my confidence in her and I as a team going places together during the day and surviving to tell the tale soared! Such a little thing we did, go to the library and check out books, but it really was a huge deal for me.
Maelee still lives for books. It remains to be the only time she holds still. She devours books. It’s her thing. She begs for library trips after school and then she reads them all up and begs to go back. She has some favorites she reads OVER and OVER (Freak the Mighty,etc) and gives Frank and I book recommendations all the time. She left one of her fairy books on Frank’s night stand recently and adamantly promised him he would NOT regret reading it.
Lesson learned, sirens do not go off when I think about taking the kids to the library anymore. Now its just a matter of not loosing the books instead of worrying about Cystic Fibrosis stopping me from being the Mom I want to be.
Thursday, March 19, 2015
Waffle Love - Monday March 23, 2015 - Adams Family CF Fundraiser
Wednesday, March 18, 2015
Slicing and Drilling
Tuesday, March 17, 2015
Embrace the Sentiment
My husband quietly beats to his own drum. When we were dating he showed up at my house to pick me up for a date and had on a pair of jeans that he had worn so much that the thick hem of the jean had come undone and was hanging off the end of his pant about 5 inches. I instinctively did what my Mom would have done for me or one of my brothers if she saw us come downstairs with something hanging off of our clothes. I grabbed a pair of scissors and said, “Here let me get this for you.”