Remembering 9/11

It's hard to believe that so many years have passed.

On that dreadful day, we lived in Allen, TX in a beautiful red brick home in a quiet suburban neighborhood. I was sitting on the couch folding clothes while watching a children's show with Jessica, Jacob and David. They were so little then. Jessica was 6. Jacob was 4 and David was almost 3 years old.

They interrupted the children's television show with the news that a plane had hit one of the World Trade Centers. At first it seemed to be an accident, but within moments there were confusing reports of other planes hitting other buildings. The pentagon included. I had a friend who worked in the Pentagon. His father worked there also. There was also a report of a plane going down in a field. It was all so confusing.

Then we watched on live tv as another plane came into view on the screen. I remember feeling so helpless as I realized the plane was headed for the towers. There was no doubt at this point that it was intentional. America was under attack.

I remember watching bodies dropping from high up and the sound of them landing on an awning. I remember the mass confusion on the ground.

For some reason, Dwight was home that day. His company had an office near there and I was so thankful that he was home. I woke Dwight up to see the news, but I was in such shock that it didn't even occur to me to have the kids go out of the room.

I remember how quiet the world seemed for a while. I was scared to take the kids out to the mall or to the parks. I remember watching the tv for hours as they reported on people looking for family members. I remember feeling so sad.

I wish it had never happened. I cannot imagine the sense of loss that so many families feel from such a senseless tragedy.

Did the perpetrators realize that Americans would become stronger because of their attack? Did they know that we would forever remember that day? Did they anticipate that it would awaken so many sleeping Americans to the need to protect our country, to fight for our freedoms, to pray, to be thankful, to honor one another?

I love the surge of American pride that followed, the surge of gratitude for those who keep us safe, and the surge of prayers that took place. I hope as we remember today that we still remember to pray, to be thankful and to be proud of righteous freedoms.

May God bless each and every one of us. May He watch over and protect those men and women worldwide who sacrifice so much so that we can enjoy so many things, and may their families feel His loving arms around them.

And, may each of us thank and honor them for their selfless service.

Seriously???

Enough with the scary experiences this week. I hesitate to even put this picture here, because I really don't ever want to ever see it again. But here it is...

Can you see it?

If you know me well, you may have some idea of how I'm feeling today. I'm trying to deal well with this, but it just feels like the proverbial straw.

Creepy Experience

I went downstairs at 3 am to help Ryan because he was choking. When I was leaving his room, I heard this really creepy whisper-y voice saying "Mom", slowly, over and over. It didn't sound like *any* of my children. I couldn't even tell where the sound was coming from -- maybe inside the *locked* closet??

Then in the darkness, a hand touched my thigh. I almost peed my pants!

Deborah is lucky she didn't get hit out of pure reflex. What the heck was she doing downstairs at 3 am and why did her sweet little voice sound *SO* creepy?

Ryan's Little Ears

Ryan had tubes put in his ears today. He also had the Brainstem Auditory Evoked Response test done. Isn't that a scary sounding name for a hearing test?

The tubes were inserted without any problems. There was a little bit of mucousy stuff on the right side, but the left ear was completely clear.

As for the BAER test, well, it showed that he has hearing loss. He is 60/70 and the normal range is 35-40. He also has delayed processing. That didn't surprise me. But, I did feel surprised by the hearing loss. Thankfully, it's very treatable. In a few weeks we'll go for a hearing aide evaluation.

The other thing that was stated was that Ryan's overall brain waves were "odd." I have requested a copy of the EEG readout so that I can share it with Ryan's neurologist. It'll be interesting to hear what he has to say about it.

The really great thing about today was that Ryan had NO problems with the anesthesia. What a relief! And, now he's lying next to me in his Nap Nanny just chattering away. Geesh, I love this kid!

A Dream

I didn't want to wake up this morning. I was having such a great dream.

Dwight and I were in a large flat-style apartment. Deborah and Ryan were the only 2 children we had with us. I think Ryan was probably 7-9 years old and Deborah was probably 11-13 years old. Dwight and I were just waking up when we noticed Deborah and Ryan in the room with us. We quietly watched as Deborah continued to teach Ryan to walk.

A little later in the dream, we all walked behind Ryan as he walked into the chapel. No one (including Dwight and I) knew that he was so close to walking. Our friends at church shared in our joy and there weren't many dry eyes that morning.

I hope I never forget this dream.

Just a quick update .... I slept well last night. Today I'm a little tired still, but otherwise feel well.

Maintenance Treatment #1

I went in for my first maintenance treatment yesterday morning. The treatment went well and we were able to do just a small dose of Benadryl. Benadryl is used to reduce the allergic reaction to the medication. They also gave me steroids to prevent my autoimmune system from kicking into high gear.

I felt a slight allergic reaction -- reddening of my face and elevated temps toward the very end of the treatment, but it was nothing too bothersome. It was nice having such a small dose of Benadryl because I wasn't just knocked out.

When I came home I did take more Benadryl to prevent any further reactions and I took a short nap. I felt really droggy, but I wasn't necessarily sleepy.

As predicted by the doctor, the steroids then kept me awake all night. I'm so tired, but I can't sleep ... and haven't slept since around 6 yesterday evening. A large dose of Tylenol took care of the headache, and there was no nausea, so it wasn't too bad. Besides, I managed to write out (in excessive detail) our current budget versus my new proposed budget. I even assigned all the money out for the next year. It's sad to say that cause it's extremely true. We really are blessed to be able to keep our heads above water, but I sure look forward to the day when we don't have quite so many expenses. I know we have some pretty major expenses that we won't be able to avoid in the future ... like a wheelchair accessible van, but I'm just going to have to put that out of my mind for now. I just can't believe how crazy expensive they are!

Anyway ... The really great thing about treatments yesterday was it gave me the time to call one of my really good friends from high school. It was her birthday yesterday and I try to call her every year. I usually just get to leave her a voice mail, but she happened to be available to talk. It was so nice to hear her voice. I have tried to express to her many times how much I appreciate her friendship, but I'm not sure she ever really gets it. It's a little tough sometimes to know. She doesn't keep in touch at all. It's always me that makes the effort to reach her. I suspect she's really like that with everyone, but maybe I just want to believe that so that my feelings won't be hurt. :) Either way, I'll continue to call her each year because I do believe she's a really good person and I wish her the very best.

Oh, one more thing before I go, Ryan is doing much better now. Thanks to all those who have asked and called to check on him. I'm not sure why he was having such a hard time with eating and with seizures last Sunday through Wednesday, but things have started to settle back down again.

I'm off now to get the kids ready for the day. The older 2 boys have a Merit Badge Workshop today. They're pretty excited to get back to it after a 2 month break. I think we'll schedule Scouts into their weekly school routine. There are so many really cool merit badges to do. I'll just need to figure out how to find Merit Badge Counselors for each of them. :)

Thank You

Today while I was at the Oncologist's office, I was surprised by someone's generosity. I don't know who did it. Whoever you are, THANK YOU! It was such a kind, thoughtful thing for you to do and such a sweet surprise for me. Thank you!

Birthday Celebrations

What do you serve a 42 year old who doesn't love cake and a 2 year old who can't eat cake? Well, a ding dong "cake" with Charms Blow Pops, of course. (The kids tried to talk us into lighting the tops of the sucker wraps like candles, but the adult in each of us thought it best not to do it.)


What did Ryan think of the cake?
Well....

Perhaps it wasn't exactly what he was expecting.


Then we introduced him to lollipops.


At first he wasn't so sure about it,
then he seemed to really enjoy it.


For about 3 seconds.
Then he was just content to be with the family.


We love and adore you, Mr. Ryan!

angelic

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.

TTT

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?

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.

Ryan's therapy appointment today went great! We worked a lot on sitting and rolling. We also worked on stretching out his left arm, which has become really stiff again. One of the most exciting parts of therapy today happened when Ryan had rolled (with a little help) onto his tummy. He brought up one leg and pushed himself forward on the blanket. So Miss Erika (our Physical Therapist) helped him. He really enjoyed scooting. It's so fun to see him engage his muscles and help himself move. I feel really encouraged today that he will be able to sit, roll, and even scoot before much longer.

It was also really fun to watch him interact with Erika. He loves her so much! Erika has been such a blessing in our lives. Unfortunately today she shared some bad news. She's leaving in September.

It's really hard to have these amazing people come into our lives and then leave. Not only will it be a loss because she's very talented at getting Ryan to do stuff, but we will simply miss seeing her each week and enjoying her kind spirit. We do wish her and her husband the very best and hope she will keep in touch with us!

Metabolic Geneticist Follow Up

Today is our follow up with the Metabolic Geneticist. I'm not anticipating any news since we've already received all the results from the last round of testing. I am curious to see if he feels there are any additional tests to run. I'm hoping Ryan doesn't need any blood work.

I'll keep you posted.