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 1^st 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!

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

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.

How to Get My Kid to Eat, AKA, When the Circus Comes to Town 5 Times A Day

Not having the desire to eat isn’t anything I have experienced (even when I have a cold and can't taste anything I keep eating just in case I may catch some flavor). I enjoy eating. I am blessed to have food to eat when I desire to eat it. Some people, many children, definitely one of mine, do not enjoy eating. It has become clear to me that my own kid's lack of desire to eat is a real challenge for him. It’s a struggle. Every pain associated with his stomach, even the pain of hunger, seems to turn him away even further from the mental desire matching up to the physical actions of chewing and swallowing anything.

Teaching my son Orson, who has a strong aversion to eating, to enjoy food and the time spent eating has been an interesting experience. Every day is different in what helps him to have eating success so we have tried a lot of silly things to get him to eat (you know things like take this bite like a doggy). Here are some things that work for us, maybe some of them will help another family.

·         We learned with our first kid from a genius nutritionist we work with at our CF clinic that we should never say “eat this food for Mama (or Dad, etc)” But instead we should focus on showing our kids that the food they eat is a choice of taking care of their body. When they are successful in eating, even a few bites, we encourage them by saying something like “Whoa buddy I bet you feel great after eating that cheese stick and taking care of your body.” “You are going to have lots of good energy now from that banana that you ate, way to take care of your body!” Of course this idea of focusing on kids making good choices for themselves and not for others even their parents is a good general life guideline, not just with eating.

·         Many days options of foods, for example when I list what I have that he could choose from and the list is longer than 3 things, he is overwhelmed and pushed father from the end goal of eating. So I stick to one or two things that he has enjoyed in the past then cheerfully convince him of how swell it sounds to eat that thing again.

·         The amount of food placed before my son can also overwhelm him. So I cut or arrange his food into a certain amount of bites and then we count down each one until they are gone. I sometimes, so he can see his progress, get a notecard and write out the numbers one through fourteen. After each bite I let him circle or cross out the number so we are breaking up the bites with an action.

·         We read a storybook while we eat. For every page, he eats one bite. This helps him have time to chew and swallow and helps me not to go crazy while I am sitting there waiting for him to do so. The goal being by the end of the book he is done eating.

·         Since he seems to be constantly wanting to walk around instead of eat we make action rewards for each bite. For example, he takes a bite and then gets up and does 5 jumping jacks, or he takes a bite and then does a crabwalk to the bookshelf across the room. This gives him the chance to wiggle, and break up the bites.

·         A new favorite of his is doing puzzles while he eats. He puts a piece in place and then eats a bite. There is an amazing puzzle app called “Jigty” that I like. This works well for him because he loves puzzles. Another child may get to paint one nail with nail polish for every bite they took, or race one car across the table for each bite they took – whatever interests the kid and is appealing enough to eat for.

I am sure that some would say what I am doing is unhealthy and I am creating an eating monster or that I should just let the kid eat and learn for himself. However, the good news for me in regards to these people is, its my kid so any mistakes I make with him are square on my shoulders. If I had a kid who wanted to eat and would actually do it when food was placed before him I wouldn’t be writing this post. Hopefully these ideas work for another family and they can come to see more days of willingness to eat and that magic connection of mental desire and physical action to chew and swallow.   

How the Mess Was Blessed, Again.

Watching baby Ruby with the three other kids makes it easy to see that they are not strangers meeting for the first time. Her eyes, always searching for the face of one of her siblings, and her humungous smile when she finds their eyes tells me that they are simply reacquainting here on Earth. We have been missing her, and we didn’t even know it until she got here. The blessing she has been to our hearts in giving us all more ability to love and more chances to show it cannot be expressed in a blog post, but its powerful and its very real to all of us.

So on her 4 month check up (a week after a CF clinic visit) with her pediatrician in late October concern was growing that she was getting sick. She was able to keep it together until the week after when she seemed to be slipping further and further towards another hospital stay. I, who already feel like I have been running on the lowest of household and motherly basic maintenance modes, was a wreck (sorry I forgot to sign your homework sheets so many times my bigs). All focus was on Ruby and her feeds and how to work through them and the coughing and the eventual vomiting induced by the coughing. The same pattern that landed her in the hospital in July was unfolding before my eyes and I didn’t know how to stop the train and felt helpless as I would be so so so so careful as I fed her and then again a coughing spasm would lose the work she and I had done over the past hour as she would cough, choke and vomit 6 times a day. We were a mess. I was sure we would be in the hospital again. The ironic part was that when she got sick last time she was in the hospital on the Sunday she was supposed to get her baby blessing in sacrament meeting at church, and she was getting bad again right before we were planning on blessing her again (Nov 1^st).

Lots of prayers were in our hearts. I needed to know what to do and I needed to know how to help her best. A not so irrational fear I carry is not taking a sick kid to the hospital soon enough and regretting it for the rest of my life. So I was into my pediatrician often. 4 times in 7 days, it would have been more but there was a weekend in the middle. But I kept in close contact with my CF team and had a well trained and prepared pediatrician who helped us through. In this instance, we slowly and so thankfully saw Ruby improve and come out of the hospital danger zone.

What I am ecstatic to see now is the chain of learning experiences that happened during our 1^st hospital stay that made it possible to avoid this one.

                First, my encounter with the large looming respiratory therapist one night in Ruby’s hospital room in July in which he told me of a fellow respiratory therapist on his team that purchased a hospital grade suction machine (on Amazon of course) when his baby got sick to clear out the snot and avoid a potential hospital stay triggered our research, attempted insurance involvement and approval, and eventual purchase of our own code cart grade portable suction machine. Or as it has lovingly been named in our home, the Snot Vacuum.

                Second, what I had learned about Ruby and how she responded with her feedings and how to hold her and burp her to maximize her ability to not cough during the feeds gave me the specified experience I needed to help my baby this time even better.

                Third, I saw that even though I full well knew I was a mess I had to control my temper, irritation, and anxiety because the second I did not the Holy Ghost (light and spirit of Christ) was not able to direct me, or more accurately I was not able to hear it and I needed to be able to hear it to know the step by step of what Ruby needed and when she needed it. Example : Suction her now, stop feeding her the bottle and take a break, use the percussor on her back now, etc, etc. The more I was able to feel calm enough to pray, silently most often, and control my emotions with my other beautiful and slightly neglected at the time but still loved (and fed and bathed I assure you) children and husband the better I was able to handle helping Ruby and allowing Heavenly Father to help me help her through it.

The point is, the mess was blessed. It is still a mess, but a continuously blessed one. As one of my favorite country songs says, a beautiful mess.

Now for some really exciting news, and a big fat ripple effect of Ruby’s hospital stay in July was that it gave the proof positive for insurance that although she is small she could benefit from a chest percussion therapy vest. So with the help of a dedicated and exceptionally awesome CF clinic team Ruby now officially has her own shaker vest. She will still start on 35% (while the other two CF vesters in the family can tolerate 80% and 100% power), but she has her own!  

These experiences show me like countless others in the past have that God blesses us amidst our trials. We walk through disappointment and trials but we do not walk alone, and we are being led to a better place.

Dialing It Up A Notch : How We Met Billy

 

I decided I would hate Orson’s g-tube or his “button” the night before Orson had his surgery in April. He was taking a bath and I just kept thinking over and over, “this is the last day he will have a normal stomach.”

But his resilience with the new addition to his stomach genuinely impressed us as parents. He willingly let us help him at night and we faithfully hooked him up every night (except Sunday’s when he gets a break from doing it).

Now 6 months later he still hasn’t gained any weight. A tremendous amount of work has gone into the button for no weight gain. I knew he had been fluctuating over the past 6 months but it was only between 34 and 35 pounds. We went to the CF clinic on October 20^th and his 35 pounds was confirmed on their scale. Such a bummer. Then the next day we went to the pharmacy to pick up the antibiotic Orson got prescribed from the clinic visit. It was a liquid. I was so mad at myself for not remembering to ask for a pill form. Orson hates liquid medicine and I knew it would be a monster battle everyday for him to swallow it two times a day.

As I was about to loose my mind, I remembered that one of the things we were taught in Orson’s stay in the hospital with his surgery is that any liquid medicine Orson can take through his button! It took a little convincing but he let me do it!

Then the next Sunday we were practicing for the primary program and the “Jonah” verse from “Follow the Prophet” slapped me in the face. The verse says :

                Jonah was a prophet, tried to run away.

                But he later learned to listen and obey.

                When we really try, the Lord won’t let us fail:

                That’s what Jonah learned deep down inside the

 

                whale.

My decision to hate the button, and be resentful of it was not helping Orson. I wallowed in my hate and resentment for 6 months doing the minimal amount of work. My hatred had caused me to overlook that fact that I hadn’t really tried to make full use of the button and best utilize its potential for Orson. So now I am dialing it up a notch. Frank is very encouraging and helps all he can. We already have been blessed with ideas in regards of how to better utilize the button. Frank asked Orson if he had ever thought to name is button. Orson thought that was a great idea. Orson picked the name, Billy. So now instead of a piece of plastic we resent, we are talking to Billy all day long. Orson is totally into his button having a name and has created a personality and family for Billy Button. Currently Billy Button has one of his kids in the hospital, but don’t worry they will get out before Christmas – according to Orson of course. We go in again to clinic for an official weight check in December and we are excited and hopeful to see the fruits of our labors.