Tuesday, February 22, 2011

The small and simple things . . .




We pretty much appreciate and relish in most every single little milestone that Lincoln meets. The latest: riding in the grocery cart and sitting up in the tub (Jezelle is in heaven!)!











and ohhhh how this kid loves his big sissy!



Jezelle loves going grocery shopping with me. I on the other hand do not like going grocery shopping with Jezelle. But, the other day this tiny shopping cart was our saving grace. Thank you Trader Joes.



The funny things that Jezelle has said lately:

- every week after church she marches into our Bishop's office (like she owns the place) and politely asks for candy. The day after New Years, before he gave her candy he asked her if she had earned any money in 2010. She pondered for a moment and then said, "No, I just earned stickers." Good enough.

-at a restaurant the other night when the waitress asked if we wanted drinks Jezelle said, "Um yeah- I'll have a diet coke." Uhhhh no you won't!

-She says "oose" instead of "use". So, sometimes she will ask me if she can "oose one of my purses". I love it.

-Lately she often asks for makeup before she leaves for school so I 'pretend' to put on some blush, lip gloss, etc. The other day as we were rushing out the door, she said, "oh no! Mom, I forgot to put on any makeup."

She cracks us up all day long.

Saturday, February 12, 2011

A Novel



Shane was playing with Lincoln on his belly a few weeks ago and somehow Lincoln slipped to the side of Shane and hurt his leg. At first we thought it just scared him because Shane grabbed him quickly so he wouldn't hit the floor. But then he started visibly shaking and screaming and we could not do anything to calm him down. After two hours of this we decided we should take him into the doctor. He screamed the entire time the doctor looked at him too, so of course they ordered x-rays. As if we needed one more problem added to the list. The x-rays did not show anything but they put him in a hard splint anyway. We soon realized that it wasn't his leg anyway, it was his hip, and we took off the splint. But don't worry- not before taking a picture of it!!! The ironic thing was, we had just been to the doctor's office the day before (and three other times that week!) because Lincoln has had such a terrible cold on and off for 6 weeks now. The doctor finally ordered a chest x-ray (which also turned out ok) so that occurred on Friday and when we showed back up on Saturday for x-rays you should have seen the technicians face. I spared her the confusion and said, "yes- we were here yesterday and we are back again today." For the next few days if we moved Lincoln wrong he would scream!! And this kid hardly ever even cries so it was the saddest thing to hear this cry of pain. We finally took him to an orthopedic doctor, to make sure he was ok. When the nurse called us back she said, "Wow! This kid's chart is a novel." Yup. That's our boy. Shane responded with, "we wish it wasn't."




While waiting for the doctor to see us, Shane and I started counting the number of specialists that Lincoln has had the "privilege" of seeing throughout the past 11 months. Here's the list:

  • Gastroenterology
  • Genetics
  • Craniofacial
  • Neurodevelopmental
  • Neurology
  • Cardiology
  • Audiology
  • Surgeon (regarding the cyst on his head)
  • Orthopedics
  • ENT (ears, nose, throat)
  • SLP (for swallow studies)
  • PT (feeding therapy and physical therapy)
  • OT (for occupational therapy and sensory therapy)
  • and of course the pediatrician (about every two weeks at least!)

Now for the list of procedures which he has had done:
  • 3 video fluroscopic swallow studies
  • 1 upper GI study
  • 1 MRI
  • 1 electrocardiogram (EKG)
  • about a million trillion x-rays to view placement of his ND and NG tube (seriously too many to count, nor do I even want to know)
  • 2 chest x-rays
  • 1 leg and hip x-ray
  • 1 CT scan

In a report I read last week it read:

"He presents as a child with a medical history including: failure to thrive; dysphagia; gastroesophageal reflux; developmental delay; mildly dysmorphic features; two chromosome abnormalities of uncertain clinical significance; recent ear infections. Please refer to medical records for additional information."

And that's the thing. The above is not all of it. There's more! And when I read these reports it makes me sad, overwhelmed, anxious and very worried. But yet, I must stop and remind myself of the lessons that Lincoln, an 11 month old boy, is teaching me. Despite the fact that he has therapy three times a week and usually at least one doctor appointment somewhere in the mix as well, he remains happy, positive, and full of life. He continues to be motivated, and works oh so hard each and every day. And he lights up our life. And as Shane keeps reminding me, he is probably not here so that we can teach him, he is the one teaching us, and allowing us to serve him.

I heard a question on Oprah last week, about whether or not people who have children are more happy than those who do not have children. The "expert" kind of laughed off the answer by saying parents are more happy when their children turn 18, and when I heard that I wanted to scream, "you are missing the point!!!!!!!" Children bless our lives by giving us, as their parents, the opportunity to give ourselves fully and completely selflessly to another human being. They are allowing us to know what it's like to give service, to think about others, and to love unconditionally. And that, in my eyes, is a very happy thing.

People often ask me "how is Lincoln doing," and although I know they mean well I sometimes don't know how to answer. "Uh, well aside from 3 therapy sessions this week and 4 doctor appointments, plus one x-ray he's doing really well." When a friend of mine asked me last week, "so, what are some of the new things that Lincoln is doing lately?" I realized that was a great question which I could answer. And so once again, Lincoln teaches me yet another lesson in life. Lesson #1893: I want to try to be more conscious of the questions I ask other people so the questions have more meaning and I am able to learn more about that person and what is really going on in their life.

More and more every day I believe that Lincoln was born into our family for a reason, and for a purpose. Although I often forget that and feel sad at times, I try so hard to focus on the positive, just as Lincoln does. I have my good days, and my bad days. I found a blog last week that read on the top of it: "who knew life could be so perfect living a path that wasn't planned". I'm not sure I'd quite describe our life as perfect, but I do know there is a purpose, and for that I feel blessed.