Monday, March 19, 2012

Feelings of abandonment

This blog has been having them. And I let it happen. It's been about 18 months since my last post....I sheepishly admit. And a LOT has happened in 18 months. Here is a quick run-down:
  • I started massage therapy school. Monday - Thursday, 7 to 10:30 pm. A mommy and babysitter (I hate being called this and am still seeking alternative titles) by day, student by night.
  • Christmas came and went.
  • I got pregnant. Due date was 10/2/11. Expected date of graduation was 10/14/11. Houston, we may have a problem. Have you ever done something as physical as given a massage...or 5...while pregnant? Not recommended.
  • Continued to plow through school. My mantra was "Must finish. Must finish well. Must finish well before baby get here." Repeat.
  • Took a weekend trip to LA before weekend clinic started.
  • Worked doubles in clinic to get that requirement completed before baby comes. Repeat mantra stated above.
  • For those keeping track, yes, I was at school 6 days a week. 7 toward the end.
  • Took a vacation to Charleston, South Carolina where I started to develop a strange skin thing.
  • Came home to discover my strange skin thing was actually shingles. As I said at the time, "Shingles on a roof are cool. Shingles on a human, not so much." Pain, lots of pain. Forced break from school for a few days just about sent me over the edge.
  • Friday, Sept. 30 - Finished my second to last hands on and written final at school while welcoming the calmest of contractions.
  • Monday, October 3 - Gave birth to Jillian Elizabeth Marie Kelley within 10 minutes of arriving at the hospital. Birth story will come later. Birth experience in a word: incredible.
  • Wednesday, October 5 - Came home from the hospital to get dressed in my school uniform and go take my last final. Yes, you may call me SuperWoman. But only for today.*wink*
  • October 14 - Graduated from Arizona School of Massage Therapy with a 4.0. Not easy but worth it.
  • Christmas came and went.
  • Now I seek a job in the field of massage therapy. Still a mommy by day (and night).
So that's about it. I'll just let you sit with this for a day or 2 then I shall start to tackle my list of blog post subjects. :)

Have a blessed day.

Tuesday, September 28, 2010

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!

Wednesday, September 1, 2010

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...

Sunday, August 29, 2010

My CF Grocery Store

While in the grocery store the other day, it occurred to me there are time when I have to shop for our family and there are times when I have to shop for Samuel. This isn't anything new but a funny thought hit me in the dairy aisle.

I was looking in the refrigerator trying to find the best deal on the largest container of half-and-half for Super Milk (4 oz. whole milk, 4 oz. half-and-half, and a packet of Carnation Instant Breakfast) and had the thought "Why doesn't the grocery store sell half-and-half in a gallon container like milk?" Then, just as soon as I had the thought it came to me: "Uh, E, most normal people don't go through half-and-half as quickly as milk. Duh!" Then, keeping in stride with the conversation - with myself - I answered and said, "Well, in my grocery store...in my CF grocery store...half-and-half comes in a gallon jug." Up to this point, people around me didn't know about this private conversation going on with myself, thankfully, in my head. I couldn't help but chuckle at what a silly idea a CF grocery store is. As I made my way over to the 12+ foot refrigerated section of yogurt, I was delighted to have 2 choices of whole milk yogurt for Samuel. Just like before, it came to me. "In my CF grocery store, there aren't any low-fat/non-fat yogurts."

It didn't take long to get me on a roll, so I made a list of the things in my CF grocery. Well, I didn't make a written list, but I did give it a little thought. In addition to the items above, here are just a few things that will be in my CF grocery store:
  •  Boxes of "Just Yolks" will be on the shelf next to "Just Whites" to allow the chef (HA!) to create their own ratio of yolk to white as needed.
  • No part-skim cheese. Only whole milk cheese.
  • Frozen vegetables with butter sauce in a 1 lb. to 1 lb. ratio.
  • Salted...uh...everything.
  • The widest selection of dips like, ranch dressing, peanut butter, Nutella, sour cream, cream cheese...pretty much anything to add some extra flavor. And calories.
  • Full fat ice cream. REAL ice cream. In any flavor you could think of.
  • There is no such thing as turkey bacon. Or turkey sausage.
These are just a few items. But I'd love to hear what you'd have in your CF grocery store!

Monday, August 23, 2010

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.

Sunday, July 25, 2010

Update on Samuel - Not much to update

It was a little over a week ago that my Mac, well, I'm not sure what happened, but it stopped working. Long story short, the hard drive stopping "spinning" as the Genious said. So the bad news: everything on my Mac from the last year was lost. Pictures, work, images, iTunes (I'm not convinced all iTunes purchases are lost I just haven't figured it out yet) all lost. The good news: the Mac wasn't even a year old and all parts were covered under warranty so I got a new hard drive installed at no cost. Thank you Jesus! :)

Update on Samuel- Swim Fwim lessons are over. Thankfully. He did quite well in my opinion, but by comparison, um, he passed. He went underwater, attempted to hold his breath for a split second, and, um, that's about it. Floating went uh, ok, it didn't go well at all. But it's over. We didn't drop out (which would have been OK, but not what I wanted) didn't skip a class or were even late. We stuck it out. It's finished for now. We will try again for Michael Phelps-like swimming abilities later.

And speaking of sticking with it... I'm SO glad we stuck with the Storytime Arts and Crafts class. He loves his class! Even last week he was so sleepy and was snuggled up with me before class. I was a bit unsure of how it would go but when his teacher invited the kids into class, he was very excited. On his way through the door, he said the obligatory "Bye Mommy!" without looking back. I'm happy he's gaining independence but sad at the same time.

He's saying lots of other funny things. Like when he holds up his index finger and says "I GOT it!" like he's just had the best idea. Or my favorite is when he folds his hands in his lap and says "Soooo...." I started responding with "What do you want to talk about?" and now he says both and usually answers his own question too. His usual response is "Let's talk about daddy!" He was really surprised when I told him a secret about his daddy. I said "Daddy is my best friend." He looked at me a bit surprised, and said "Daddy your best friend you?" Well, yes, he is, if that's how you want to say it.

Operation silent auction donation solicitation is in full effect. As of now, we have one donation. Since I've got the computer back I can focus on that a little bit more. And I'd better if we want to have anything worth bidding on! Maybe that will be my focus this week. It's so hot (humid as well) that I don't even want to leave the house. OR maybe I can just mentally summon the donations to come to me.

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