We broke 30!

I'm not sure how this is such a surprise, but Samuel has finally broke 30 pounds! Since his last 2 visits he was stuck in the 29 range, I was sort of expecting the same this time. Even though I know he's grown in height. But, anyway... we are celebrating!!!

And, if that wasn't enough, today we closed the study book and turned in the giant bag of empty HTS study vials. After a year of 2 plastic boxes occupying my kitchen counter (1 for full vials, 1 for empties), I can now clear that spot for a little while and enjoy not completing surveys every Tuesday night. Well, at least until the next study.

In spite of the great news, we still talked about a g-tube for Samuel. See, in addition to gaining a little weight, he also grew an inch, not changing his place on the growth chart very much. Actually, I think it dropped a little. Even though he's still "borderline"we are having the same conversations at every clinic visit. At this point, it's still our decision. I'm fearful that one day it won't be our decision anymore. While I don't consider myself as one who keeps her head buried in the sand, I'd rather not think about how a tube will change our lives forever. We will keep doing what we're doing and hope for a miracle!

Yesterday's CF Clinic

Yesterday was a clinic day for Samuel. I'm not quite sure how it had happened, but his last clinic visit was several months ago...maybe 4 or 5? Don't fret, he's been seen at this HTS visits by his usual physician. But yesterday he saw another CF clinic team member, the nurse practitioner. Wait, let me back up.

Since Samuel was little, he's had trouble gaining weight. First sign something was up (if you don't count the time the doctor said "Your son has cystic fibrosis") was his inability to get back to his birth weight at the usual 2 week mark. He takes enzymes and those help but his daily caloric goal is 2,000+. Yes, that's more than I need. I'm not a betting gal, but if I were, I'd put money on this: He's never reached his goal in one day. Ever. In which case, it's pretty impressive he's doing so well maintaining his weight...what with all the running he's doing. every. single. day. Just ask his Papa E. Our vacation was filled with the phrase "Chase me!"

Kevin and I have always joked that we knew how concerned the nutritionist was with Samuel's weight gain (or lack thereof) based on what order they came in the room. If the doctor came in first, not a huge deal. If the RD (registered dietitian) came in first, we knew he didn't meet his goal. I'm pretty sure we've seen the RD before the MD since he was about 10 months old and yesterday was no different.

For those keeping track, our most favorite CF doctor, Dr. O, moved away and Samuel had to get a new one, Dr. R. Dr. R is great, but my oh my, Dr. O set the bar rather high. At our final visit with Dr. O in February, he was the first to mention a g-tube. Of course, at the time, this was something that we did not want for our son. We've still tossed the idea around but we aren't making appointments with surgeon or anything. The team still wants us to consider it, even though Samuel's situation is so variable. Technically, his growth is normal. His weight to height ratio is putting him between the 10th and 25th percentile. Totally normal for a typical child. Unfortunately, Samuel isn't quite typical - with CF and all. We understand this could be just what Samuel needs but have some more research to do to see if it's the best decision for our family.

I'd like to take this chance to say WE STILL BELIEVE. Well, ok, to shout it out.

Of course we still believe. We never gave up believing. And, thankfully, I know a God who can and who does every single day. He's in the miracle performing business. And, furthermore, it is my belief that until God chooses to do something fabulous through Samuel, it's my God-given responsibility and commitment to my son, to make sure he is (and we are) faithfully doing his treatments, taking his meds, and doing the absolute best we can to treat his disease. It is my belief that God has let this (CF) happen to Samuel and our family. It is, after all, something we all deal with, not just Samuel. It is also my belief that God gave someone, scientists...researchers...doctors, the knowledge and ability to come up with drugs and treatments to extend the lives of people with cystic fibrosis. In my opinion, it would be foolish to ignore those drugs and treatments, or even to ignore the diagnosis. Sounds crazy, right? I've heard of it happening.

Until then...

Lacking Inspiration

I've been lacking inspiration to blog recently. I bet you couldn't tell. :)

Actually, what probably happened was that I was so excited and looking forward to our family vacation that I didn't allow much else to occupy my spare time. In total "Elf" fashion, I've been looking forward to vacation so that first we would make sand angels, then build a giant sand castle, then relax on the beach towel for 1 hour, eat a half gallon of ice cream as fast as we could and top it all off with an evening swim. Now that it's over, it's back to reality. Back to running. Back to potty training (which took a fabulous turn for the better while we were away). And back to the grueling ways of the CF mom. The grueling ways are just means to stay up with his disease. Sometimes it seems like we struggle to just keep up, let alone try to make headway.

I love Samuel. Of course I do! Who wouldn't? I love Samuel with CF. (I don't care so much for CF by itself, but it's here and not going anywhere soon.) But all breathing treatments aside, I feel like menu planning and dietary needs are slowly taking over my life. Except it's not as slow as I'd like. If my "job" had a description it would probably be something like this:

• 50% - "normal" mom things like playing cars, cleaning up toys, hygiene
• 20% - breathing treatments, cleaning neb cups, refilling prescriptions
• 32% - obsessing about food. What would he like to eat? How is the best way to prepare it? Will it provide enough calories/fat/protein to meet his needs? 

I know that equals more than 100% because sometimes there is an overlap. I think about his nutrition while I'm doing those other things. Yes, it's safe to say, "Hi, my name is Erica and I'm obsessed with food".

It has been a sort of blessing in disguise as a dear friend is fighting a battle against cancer right now and has a challenge to meet some lofty caloric and protein goals on a daily basis. Like most of us, this is a bit foreign, so it's been really nice to share some tips and tricks I've learned trying to meet Samuel's needs. I'm happy to share and so glad all my silly cooking experimentation is not in vain.

Samuel has a clinic visit in a week. Obviously, to say his weight has been on my mind is quite possibly, the understatement of the year. From March to June (?) or July (?) his weight stayed the same. I'm not sure which month it is. They all run together sometimes. At any rate, his weight was stuck at 28 pounds. Not even an ounce gained (or lost!)...ThankYouJesus.

We will see what our next step in God's plan is next week. Of course, I will update at that time.