Thursday, July 29, 2010

Ryan is TWO!

Today is Ryan's birthday! He's 2. He is two. Two. It's hard to believe that Ryan joined our family 2 years ago. Ryan has brought so many blessings to my life.
  • Greater capacity to love than I could have imagined
  • Greater recognition of the small accomplishments
  • A feeling of joy and relief each time I see other children meeting their milestones
  • A child that is always willing to snuggle
  • Knowledge of the brain and it's amazing ability to adapt
  • New friends who have become like family
  • More respect and appreciation for those individuals and families who work so hard and sacrifice so much to provide outstanding medical and therapeutic care
  • Gratitude for opportunities to step outside of myself to serve others and especially for the personal relief that service gives me
  • Even more love than ever before for my amazing family
  • An awareness of the effect of special needs on siblings
  • Awe for those who faith to rise above their physical challenges
  • A constant feeling of being encircled and uplifted by the most amazing friends, including some that I have never even met.
  • A more sure knowledge of my heavenly father's love, the power of prayer, and the strengthening power of the Atonement
I'm sure this isn't a complete list. I am so thankful that Ryan chose to join our family. I'm thankful that Heavenly Father would trust his sweet, kind spirit to our home. I'm thankful for the strength and guidance that we have received in caring for Ryan.

Most of all I'm thankful for Ryan's touch, and for the sounds that he makes, and for the way he snuggles his face next to my chest when he's tired. I hope some day he will read this list and know that I have loved him from the first time that I met him and that I am so grateful!

New AFO's

After our 3 doctor appointments, we went by the Orthotics Shop to get Ryan's new orthotics made. It was really a quick procedure. They are going to use Batman for his new boots. I suspect we'll get them within the next week or so.

Orthopedic Surgeon

As our 3rd appointment today, we also saw an Orthopedic Surgeon, Dr. Warman. (Jessica's scoliosis was treated by Dr. Warman.) I imagine that some families would think he's quite cold, but I really like him. I think he's funny.

A lot of children with issues like Ryan's need surgery on their hips. So, Dr. Warman examined Ryan and then took x-rays of his hips. I was very thankful to hear that "for now" Ryan doesn't need surgery. Whew!

We'll go back in 6 months for a follow up visit. In the meantime, Dr. Warman prescribed a new pair of AFO's with a slight modification and said to encourage Ryan to lay in "frog position" as often as he will. Apparently, that will help keep his hips & legs loose. He said to definitely NOT swaddle his legs straight down.

Yeah, no hip surgery!

GI Specialist Visit

After our appointment with the ENT today, we visited with the GI Specialist's Nurse Practitioner and Dietitian. They were thrilled with Ryan's growth. HE'S ON THE CHARTS!

He now weighs 24 pounds and 1 ounce, and he is 32 1/4 inches tall. (Here's a crazy thought: He's more than half my height at 2, and they've been so worried about his growth.)

We will continue giving Ryan Neocate One Plus via his G-tube. We are currently doing 35 mls per hour. We were supposed to be working up to 40, but I just couldn't get him over 36 for more than 2 hours at a time. They said since he is "obviously" doing well, there's no need to stress over it. Just try again in a couple of months to increase it up to 40.

The best part of the appointment is that they have now given us the green light to introduce vegetables and grains into his diet. They recommended avoiding bananas and rice due to the on-going constipation, but said we could do oatmeal and veggies. I'm very excited about that. It'll be fun to let him taste so many new things.

ENT Specialist Visit

Due to Ryan's frequent ear infections, we went back in to see Dr. Moe, our ENT Specialist. I really like Dr. Moe. He's a happy man. I like happy people.

Dr. Moe looked in both ears. The right ear was difficult to view due to so much junk. So, he cleaned it out using the help of a microscope. It was very gentle and obviously much less bothersome than having it "washed" out.

Once Dr Moe could view the ear, he saw that the left ear was clear and the right ear had no infection but he could still see the "yellow fluid behind the ear." This means the antibiotics we have been giving for the past week are working.

Dr Moe recommended that we put tubes in Ryan's ears to help with the drainage. This is normally a very easy procedure done with mask sedation in an outpatient surgical center. However, due to Ryan's health challenges, we are going to be doing it at our local hospital. And, since we are going to be at the hospital they are also going to do a hearing test. The addition of the hearing test will extend the procedure to over an hour and will require anesthesia.

Are you curious how they do a hearing test on a child that is under anesthesia? I was. I was curious how they do an accurate hearing test on any young child, especially a non-verbal, non-mobile, cortically blind child. Well ... they use a series of clicks and monitor the brain's response to the clicks. Cool, right? Isn't it amazing the technology that exists? Isn't it amazing that our body's were designed in a way that allows them to do EEG's, etc?

Anyway ... we schedule the surgery and test for late August. I'll keep you posted.

Tuesday, July 27, 2010


I just found this wonderful quote on a friend of a friend's wall:

Put up in a place where it's easy to see
the cryptic admonishment TTT.
Whenever you think how slowly you climb,
It's well to remember that
Things Take Time.
David frequently helps me with Ryan's bath. Today after we had finished Ryan's bath time, I went to take care of some thing for one of the other kids. When I came back, this is what I found:

Looks like a good brother-to-brother chat, doesn't it?

Monday, July 26, 2010

Developmental Pediatrician Visit

Ryan and I met with his Developmental Pediatrician today. We have been seeing him about every 3 months since Ryan was born. At first, I really saw no reason for these visits. It just seemed like they were documenting his progress, but I could do that.

We normally meet with the Nurse Practitioner, but today we met with Dr. Fierro. It was wonderful! He spent a lot of time with us. He was encouraged by Ryan's progress and had a few suggestions for us.

First, he discussed the need to set limits and expectations even for Special Needs children. I think we're already doing in this in the small way that we need to do it.

He then suggested that we start focusing on teaching cause and effect. The therapists have also been giving suggestions recently on how to do this. Most children start learning cause and effect when they drop something on the floor and Mom (or Dad) return it to them. They quickly learn that if they drop something, someone will pick it up for them. A lot of cause and effect is also taught visually. This makes it a little tougher to teach a child who has visual impairments and extremely limited use of his arms. I need to get busy and make the wheelchair tray for this. (I'll put pictures up and explain the concept more as soon as I finish it.)

Dr Fierro thinks Ryan will be a good candidate to communicate via computer as he gets older. He explained that teaching cause and effect is the first step in preparing him to be able to use adaptive communication devices.

We also discussed the current therapies Ryan is doing and recommended that we start looking into future options. Currently Ryan receives therapy from a group that works with 0-3 year olds. Thus, next year we will need to establish a whole new team of therapists. He gave me a couple of recommendations of therapy groups. Apparently, I need to visit with each of them and get Ryan on their waiting lists.

Let's see ... oh, we also discussed that we need to allow Ryan a lot of time out of his AFO's and primarily use his AFO's (foot braces) only when we're working on weight bearing exercises. He encouraged us to be sure not to use him when he's trying to sit, crawl or roll. Good to know. He also would like a slight modification to the new AFO's. He wants to put in a tarsal plate, which is kind of like a little speed bump that will prevent Ryan from curling his toes under.

And, he also reinforced the need to really stay on top of keeping Ryan's seizures under control. He likened seizures to a computer powering down and back up. "Each time you power a computer down and back up, you risk it not coming back up."

Dr Fierro was very complementary of our family and the stimulating environment we provide for Ryan. He said Ryan is thriving because we are taking such good care of him physically and also providing lots of opportunities for him to grow and develop. It was nice to hear such kind words.

I'm thankful we were able to meet with Dr. Fierro today. It was a pleasure.