Tuesday, December 22, 2015

One Gram at a Time

I sat down with a GI doctor and a nutritionist this week in regards to Orson and his weight gain. Initially the visit started with vitals and weight check. I was disappointed to see it hadn’t increased more than an ounce or two if even at all. Then the microscope of nutrition was pulled out and my eyes were opened.

It was explained to me that from July to December, since they had seen Orson last at that particular office he had only gained 0.1 grams a day (keeping in mind that google says that a gram is about 1/6 of a teaspoon surely 0.1 of that amount isn’t even visible to eye). But then they calculated how much he had gained from his December 1st appointment until 2 weeks later at the GI appointment and he had jumped to 26 grams per day! So if he can sustain this “catch up” phase that he is doing now with 2 full cans of “milkshake” at night then we will go nuts!

It was fantastic to see that even though the “pounds” number that I can see and am familiar with in regards to weight isn’t moving like I assumed it would, that his body is indeed growing and making progress now that he has been able to work up to the two full cans at night. We are excited by this information and know that Orson is being helped along the way by us, but most importantly by an aware Heavenly Father who knows how Orson needs to grow best!
Also it gives a girl hope when you see that changing things one gram at a time, or one mess at a time in my case and at my house, can eventually make a dent!

PS - Also as a random side note we had a cool opportunity to see Florida State play here in Arizona! It was nice to see other people with Seminole gear on!

Sunday, December 6, 2015

I Know What Your Thinking

I know what you are thinking. Whoa that Adams family looks fancy in those expensive looking upscale sweaters right? Let me explain.
Six months ago when I was leaving the house to go to what would become one of my last OB appointments before Ruby was born my always supportive mother called out as I was shutting the door "go to any stores or do any errands you need to while you are out." After a very hopeful but then uneventful "check" of my progress in regards to delivery I was in the dumps. 
So remembering my Mom's suggestion I went on a depressed walk around Old Navy. My first stop is of course the clearance section (I used to feel like I had to do a lap around the store before I went straight to clearance but now apparently my pride is out the window in that regard). These red sweaters were nothing that would normally catch my eye or something that I would buy BUT then I saw the price tag of NINETY SEVEN CENTS my heart began to sing.
The wheels of happy planning began to turn and the moment I was in (being huge and pregnant and feeling physically lousy) was forgotten. What were my happy planning plans? Matching family sweaters of course. Now the sweaters were all women's sizes but I was sure that somehow I could find a way to make them small enough to fit my kids. Plus thinking of the time when it would be weather appropriate to wear these matching sweaters made me extra happy. 
So here we are six months and a baby birth later. Lots of exciting things have happened. Last week when my kids had "ugly sweater day" or "Christmas clothes" spirit day at their school I knew the time to bust out these ninety seven cent beauties had arrived.
So the wearing of these matching sweaters (won't happen much because how I tucked up Orson's sleeves and sewed them made him angry because it made him look like he had "funny arm muscles") is not only an amazing photo opportunity but a milestone reached. Six months past the day in the dumps. Almost six months of being the mother of 4 kids and 1 new fantastic baby girl. Plus Charles likes his and wore it all weekend, so at least I have one buddy in the foreseeable future of the matching sweater club!  
Caption : An exciting and practical use of the timer on the camera

Caption : Charles looking fabulous ready to go to line up for school.

Caption : Me showing just how awesome it feels to pull off getting all 4 kids to wear matching sweaters

Tuesday, December 1, 2015

Is There A Hallmark card section for "sorry my kid pooped on you at church?"

There were a few times in the past 72 hours when I just wanted to lay in my bed with lots of blankets and have someone hook up the Oreo IV. One of those times was on Sunday when right after the last AMEN was said from Sacrament meeting we all stood up to make the switch to the next meeting. Baby Ruby had just eating and I was like, "whoa this is perfect she is full and happy and can sit easily with Frank while I go and sit with my primary class." Frank took the baby and was standing with her while we all got out of the pew and then like a stealthy ninja Ruby vomits all down Frank's arm and back of his suit jacket. She didn't even cough first the little trickster! Then as people are pointing it out to Frank and myself I see it simultaneously and grab the baby from him while at the same time she vomits again forming a pool of previously stomached milk on the carpeted floor next to our pew.

We literally go to church with the most kind and thoughtful people EVER so I had a swarm of women who came rushing over to help and check to see if there was something they could do. I was mopping up Frank's arm and back and the baby and then trying to get the floor as clean-ish as I could with a swaddle blanket when my friend comes around the corner with a wet towel. How she found a real towel in a church full of paper towel dispensers I will never know, but here she came to save my bacon. This is one of those times in life when you feel like everyone in the planet has seen the gross thing your kid just did (all over the carpet at church) and your totally in the moment of dealing with the immediate need of that and then you look up and your like oh yeah I have been terrified this would happen and it finally did. Then when I realized the amount of eyes I felt like were on me and my vomit crime scene we slowly backed out of the chapel to do a wardrobe change in the foyer. I promise you my friends I will help others like you always help me! I will start carrying towels in my trunk to be as magically helpful as the friends and neighbors I go to church with! 

All vomited items were placed in a garbage sack along with Frank's soon to be dry cleaned suit jacket and we proceeded as planned with the next 2 hours of church. Now fast forward to the end of the 3rd hour. I am sitting in a very sweet Sunbeam class and enjoying listening to another friend of mine teaching the lesson and waiting my turn to do the activity I had prepared. When my friend says, "Ok Kamarah go ahead with the activity. I can hold Ruby for you." (Frank had to talk in the 3rd hour meeting or the baby would have been with him). So the cute Sunbeams (4 year old's including my own son) are doing their activity with me when my friend says very politely, "Kamarah, Ruby is leaking." Leaking was really a very generous word for "your baby just pooped and it came out both sides of the diaper and is all over my cute skirt." Mortified....soooo embarrassed....pass the Oreos. Then a thorough wet wipe scrubbing followed and we are now looking for just the right card to express our sincerity in our apology of "sorry my kid pooped on you at church."

The moral of this story is still to be determined. Maybe it could be:

(1). Wrap Ruby in a dozen blankets or so when she is taking antibiotics.

(2). Now that one of my current worst fears of Ruby puking during a Sacrament meeting feed has happened I can live life with unabashed fervor knowing I have amazing friends and fairly absorbent swaddle blankets.

(3). I will be the kind of person I am surrounded by in my neighborhood and count this as one more experience to push me into being a helper instead of a judger when the moment of decision arrives for me. 

How To Fail a "Sweat Test"

 I never had a sweat test done for any of my CF kids. Maelee had blood work done to determine her CF diagnosis and the other two were found through amniocentesis. I did not feel a "sweat test" was necessary since DNA seems to me to be more telling than sweat anyway. I don't even remember it even being suggested until Ruby. I got phone calls from my pediatrician's office about it enough times that I further investigated my kids need for the test. It turns out that many of the new exciting CF meds (gene thereapy, etc) require a sweat test score. 

The sweat of a person with CF contains a crazy high salt level so a sweat test is the typical way a person is verified with a CF diagnosis.

So since I want my kids to be able to access all the new exciting CF meds when they are old enough to take them I got my two babies into the lab today to get the test done. The only lab is at the hospital 20 miles from our house at the same hospital we were already going to today for a CF clinic visit.

My amazing Mom was able to come with me to this appointment since it was going to be a double whammy of a 2 hour clinic visit and then the mystery of the "sweat test" scheduled after our clinic visit. Poor Orson was a nervous wreck waiting for this test to happen.

On the way to the hospital he began his usual nervous ritual of needing to urgently use the bathroom and having a very emotional panic attack in the backseat. So we drive through terrible traffic with a freaking out 4 year old in the back seat. So I am white knuckling the steering wheel - already a super nervous freeway driver - and trying to distract him by talking about the airport we were passing and where he would go on a plane if he could pick, and driving by the zoo and asking which animal he would take home if he could, etc.

We arrive and let Orson and Grandma jump out to get him to the bathroom and when I get down from the 3rd story of the parking garage with the stroller and all our gear he sweetly tells me, "it turns out it was only pee Mom."

Then we get through our clinic visit which lasted about 2 hours. Orson needed to use the bathroom again a couple of times during those 2 hours. We then re-check in to the lab downstairs to get our sweat test done. Osron pees again right before he starts his test. We have never experienced this test before so had little idea of what to expect.

We walk in and find a variety of interesting machines and medical equipment laid out on the table and counters in the room. Then they hooked Orson and the baby up to the "charge" of electricity that you see in the picture that will encourage their sweat glands to sweat. All during this process Orson was again panicked and kept screaming at the technicians questions like "are you going to hurt me with needles!?!" "What are you doing with those scissors? Are you going to cut my arm?!?"

The technician explained that it would feel similar to the sensation of your foot falling asleep. Orson disagreed. He sat there in a panicked frenzy as the machine "itched him" and "hurt him." Then after each arm was "charged" for 5 minutes each they wrapped a circular sweat collecting paper up with lots of plastic and a chemical warmer. They provided blankets for us to wrap the kids in (thank heavens my Mom was able to come so we could do both kids at the same time!!!!!) and they needed to sit with their arms wrapped up in tight plastic wrap and chemical warmers for 30 minutes to collect the sweat on the circular sweat collecting paper.

Neither child was thrilled to be wrapped and warmed in this way but they got through it. Unfortunately poor Orson did not sweat. He had peed out all of his fluids and we had not replaced them during the morning. When he heard the lady say he would have to do it again he was devastated. He turned to me and asked, "Mom the test didn't work, do I still get my prize?" 

YES SON! You totally get your prize! He was a mess all morning about the test and then it turned out he had reason to be. The great news is, he got a fun prize. And the even better news is all the kids got to hear his glory story and see the pictures we took. We are all very proud of him and Ruby for being the pioneers of the sweat test industry for our family. Maelee will get her test done when Orson goes back in for a second time later in the month.