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, October 28, 2018

Spark the Fight & Weight Loss Update


Sparking the Fight of Compliance

This is a year of blossoming and growth for all the children. Particularly it seems for our oldest child as she reaches the end of elementary school. It is on my mind always that this is the last year that they will all be together at the same school. I guess I didn't realize I would only have two years of that and once I did the last year seems very precious. Also thinking of the schedule change and location change and routine change that comes with next school year, this same daughter starting junior high and leaving the home 50 minutes earlier than she does now really really really seems impossible. We need a solid two hours to successfully complete our morning routine (sinus issues, bathroom time, vests, g-tube work, inhalers, nebs, antibiotics, pills, scripture study, breakfast, pack up) so that pushes us all up to waking up at 5 and getting started. 





I have been aware of the school day morning miracle happening each day this year again since school started. All summer long we drag through treatments and breakfast each morning and I think "how in the world do we ever get this all done and packing lunches by our 8:00 departure time on school days?" We really have angels helping us each morning. Perhaps they hold down the hands of the clock just a few seconds each minute so somehow it works. Even more miraculous are the school day mornings when I see each Saturday and Sunday all year round being the ultimate struggle to get through treatments.



She received one of the biggest surprises of her life when she tried out for the school play. She tried out for a supporting character and landed a lead instead. That boost of confidence gave her the courage to run for student council and although she didn’t win she chose to still be a class representative. Then at church she joined a group of other musicians with her viola and they have been practicing for a “I Am A Child of God,” primary program.



With this grown up schedule added on to the regular family seasonal schedule of soccer, fall parties, and her activity days for girls meetings it’s been exhausting for her. She loves all of it and doesn’t want to miss anything. She is trying very hard to keep up with it all. Then as predictable as every start of school year she begins to loose the desire to eat to make more time for friends and activities. Not taking the time to eat begins to snowball the health of anyone but particularly someone whose body already demands extra calories and oxygen.



At clinic a week and a half ago it all showed up clear as day on the vitals and pulmonary function tests. Her tank is running on empty. Her PFT’s were down 15 points below what they were BEFORE she was hospitalized over the summer. Her weight gain has slowed down enough to crash her off of her trend line. What was most disheartening and discouraging was how she took the news at the clinic. Resigned. Passive. Acquiescent.



So I come home and as I tell my husband everything I saw and heard at clinic which usually takes a few days for me to remember all the details we slowly together come up with our parent plan. We have to spark the fight of compliance and extra compliance and assertive compliance to her treatments. We keep asking what more can we do to help and what more can we do to encourage her in this life altering skill of compliance to her detailed and arduous never ending medical regimen. She has the pain, discomfort, and burden of the disease and we do what we can to help her figure out what works for her to relieve that as much as possible. I don’t like to ever  use the H word but I HATE when she’s suffering digestive wise of sinus wise or airway clearance wise and I have no more tools to hand her.



Things are slowly dropping off of her busy schedule and by the end of this week things will have gone back to our baseline of family business but then she’s left to dig herself out of the health hole she has gotten into by participating in these amazing social and mentally growth promoting activities.



The pulmonologist was so kind and understanding at clinic with Maelee’s drop in statistics. She was encouraging, overlooked the angsty elleventeen jazz and said come back again soon so we can check all your numbers.



We know she is full of strength. We watch her use it everyday. Now we need to be the best compliance coaches we can be as parents because it is not only her that is benefitting but all her siblings watching and coming up behind her. The clinic in November will bring more news to see what is next for Maelee in the last few weeks of 2018. And by that I mean another possible hospitalization or the best side of the coin soaring numbers of plenty and sleeping in her own bed.





Kamarah’s weight loss update. 

The stress of the last four years showed itself in the choices I made with food. Last time I wrote about it I was at 38 pounds lost. I am so grateful to say that right now I am holding steady at 67 pounds lost. I was selfishly hoping to get to a full 70 pounds before I blogged about it again but I’m very thankful for the success of 67 and need to remember that. I have lost more than I ever thought I could. I met two of the three goals I had and have accepted that the third goal will remain as a war wound of motherhood.



The three goals being. One: fit into my awesome red pants. I fit into them and now they are much to big for me so I am on the hunt for just as rad of a pair or red pants. Two: my wedding ring fits on my finger again, and also loose at that. The third goal which is actually a great way to keep me humble and kind will not as it seems ever be fixed by weight loss. I have a long spray of bulging spider veins on my left leg that wrap around the back all the way to the front and down my leg. I thought loosing weight would diminish those but it turns out you can’t un-stretch blood vessels and that’s OK because I’m full of joy everyday by the babies I carried that brought those veins.



My weight loss strategy has remained the same. 1,000 – 1,200 calories (tracked by me on My Fitness Pal App by UnderArmor the free one not the premium version), and to get 10,000 steps and day and or 30 “active minutes.” I would say 98% of my active minutes have come from walking either in place while I watch or listen to something or by walking in my neighborhood. I do not have a trainer, a gym membership, use pills, surgery, or anything else besides those things. My favorite way to think about my calories is waking up everyday with $1,000 to spend. I have become really good at finding the things I like and feel the best spending that $1,000 on everyday, and do still sometimes fall for traps of delicious sugar cookies, donuts and pizza. But I own up to those traps and pay out the money and don’t overspend.



My personal goal is to make it to my year mark of when I started loosing weight which was January 29th. At that point I will evaluate my weight and see what I need to do to maintain that weight. I sit comfortably smack dab in the middle of the healthy BMI range for my height of 5’10. Look up my weight I dare you. 


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