Sunday, September 23, 2007

The Fair, Disneyland, Rain, Chico, Etc...

We started off the weekend by going to the Los Angeles County Fair on Friday night. We went with my mom and Devin and ate lots of fair-esque food and saw lots of fair-esque people. Archer was obsessed with playing in a fun house/obstacle course that Chad renamed "Ninja Warrior." "NW" is filmed in Japan and features 3 levels of obstacle courses that increase in difficulty. The final challenge is called "Mount Fudoriyama" and is a series of climbing challenges. Only two men have ever finished all three obstacle courses and scaled Mt. Fudoriyama successfully. Archer was thrilled to feel as though he was a competetor on "NW." At the end of the night, when asked what is favorite part of the fair had been, he replied, "My favorite part was when you watched me do Ninja Warrior." Of course.

Archer and Dad.

Little Lambs.

Della and Nana.

Archer wanted to play carnival games and Chad was trying to convince him that it was a waste of money. To show him that these games are near impossible to win Chad told Archer that he could try the pop-a-balloon-with-a-dart game. Archer picked up a dart, threw it, and popped a balloon right off the bat. Chad paid the game-worker and Archer tried 3 more times to pop another balloon, but was unsuccessful. The game-worker was kind enough to reward Archer's first victory with a stuffed red bulldog that he named "Fluffy."

On Saturday it was pouring rain. What was that Calder Family's first thought? "We should go to Disneyland! The park will be empty!" We only got stuck in the rain once, but fortunately for us it was while we were eating lunch. We parked ourselves under a heated patio and watched the downpour while we ate. We all love the rain and I was practically giddy when I heard that there was a storm heading our way. We have had NO RAINFALL for 151 days (April 22). Here are the pictures from our (very wet) outing.
Chad letting Archer drive the bumper car.

Waiting for the rain to stop.

Here is Chad and Archer with Cruella DeVille. She said that I had no fashion sense. Coming from her, I take that as a compliment.

Archer asked Cinderella's step-mother why she is so mean to Cinderella. Gutsy. She said that she would never be mean to her step-daughter and that she was merely trying to give her some guidance and teach her how to have a good work ethic.

Della patiently sitting in her stroller.

Archer has said some really funny things lately. We were in the parking lot of "Borders" bookstore and Archer started screaming "Dad! Stop! Stop the car! It's Jesus! Look Dad! It's Jesus! Stop!" Chad looked where Archer was pointed and saw a tall and thin hippy kid with long brown hair and a beard. Not quite.

Last week Archer tapped me on the leg and started furiously signing and pointing with his hands. I asked him what he wanted and he continued to sign and point. "Buddy, I don't know what you are saying." I tell him. "But Mom, I am talking with my hands," he replies. "Yes I see that," I say, "But I need you to use words." As he walks away slightly disappointed Archer says "Geez Mom, Ninjas know how to talk with their hands." How sad for my son that I am lacking in basic Ninja skills.

Onto Chico...Archer has a pretend friend. Named Chico(?). He is an old man with blond hair. Creepy, I know. Chico is often our companion when we are running errands, usually riding in the front seat with me. Chico also apparently takes great pride in his good looks. Archer, who is Chico's translator, informed me that Chico wanted his hair braided. I just went with it. Any mischief in the house has been attributed to Chico. How convenient. Take last week for instance. The vacuum was not sucking anything up and after I spent 30 minutes taking the whole thing apart, I pulled out an 8 inch comb and some pass along cards that "someone" had shoved into the hose. I asked Archer if he had done this and he replied "No, Chico did that." I said "Tell Chico that the next time that he does something naughty, you will be put on time out." He argued "But Mom! I already told you! Chico did that naughty thing!" So far Chico has been behaving. Well, except last Monday night. During the FHE prayer Archer whisper/yells "Close your eyes Chico! We are saying the prayer right now!" Oh Chico. You are a rascal.

Thursday, September 13, 2007

She's OK!

Della's genetic tests are in and they show everything to be just as they should be. She doesn't have Fragile-X Syndrome or any other genetic disorder. That was the last of the tests that we had to run and so it brings an end to our saga...for now. No one can explain her abnormal blood test results that we first got at the beginning of July. She has blown away all of the Dr.'s predictions and expectations. I know that it has been due to the faith, prayers, and grace of God that she has been able to make the progress that she has. I am very thankful for the great blessings we have received.

The next day...I wrote the above paragraph last night and it took me a very long time to write. Of course I am happy and grateful that Della is seemingly healed, as any mother would be. However it is bittersweet. I have met many mothers, just like me, who have children that will never be "normal" or "OK." Their children won't learn to walk, or talk, or even live past 5 years old. Back in February I met mothers in the PICU who wouldn't even be able to take their children home and could only watch as their babies slipped away. I have to ask myself, why me? Did I have more faith than other parents? No. Did my daughter have better care than the other children? No. Did I simply want it more than the other mothers? No. I guess that is just the way it is. I feel like an ingrate for even thinking these things. Only the Lord knows why, and I am just trying to accept that. I guess the human mind looks for meaning and reasoning in things that we won't understand until the next life. I can't help but think of one mother that I met during this ordeal. My first encounter with her occurred while sitting in the CHOC Outpatient Lab. We were both waiting to have our daughters' blood drawn. I watched her try and keep her three and a half year old son quiet and entertained. Anyone with a child this age can appreciate the difficulty of this task. After waiting over an hour, he was having no more of her shushing. I, thankfully, was able to drop my son off at his great-grandparent's house and didn't have to worry about keeping him occupied. I began to talk with her and she told me that her daughter had an auto-immune disorder. She was a single mother who worked full time as a nurse in Hemet. Every month she drives almost 3 hours (in traffic) with both of her children to meet with her daughter's team of specialists and to have her blood drawn. Everything on this woman's face spelled exhaustion. She asked about Della and I told her that she had some delays and we were just getting started in the long arduous task of finding a diagnosis. This woman told me to never take what the Dr.'s and specialists predicted as "the gospel truth." She was told her daughter would never be able to move. At 14 months her daughter began "commando crawling." She told me to never settle on treatment for my daughter, that I should fight for the best. My baby had no voice of her own, and that I was her only advocate. Her words left a very lasting impression on me and I thought about her often. One month later we walked into the Metabolic Center and there she was. I was able to speak to her briefly and thank her for her wise words that could only come from someone who has walked the path that we were just beginning. She said "Always fight for your daughter and take one day at a time." I felt the passion behind her words that can only come from the fierce love that a mother has for her child. Now that we are at the end of this (current) journey, I think about this mother. Her daughter doesn't have the same chances that my daughter has. My daughter's prognosis is much better than her daughter's. I am overjoyed at the fact that we have seemingly been given a second chance, but what about all of the other mothers and their children. I know that the Lord has all of His children in mind and that we all have a purpose here. I believe that He healed by daughter. I also believe that He allows other things to happen to us for our benefit and growth. In short, I am thankful for the miracle that we have been blessed with. Am I glad that it happened? No. Do I appreciate the growth and humility it has allowed me to experience? Yes. 

Friday, September 07, 2007

Playing Catch Up

Where to begin....Chad took me to go see "Wicked" and we had the most wonderful time. We sat in the 10th row and it was a completely different experience being so close! We were able to see the expressions of the actors, the detailing in the costumes, the subtle make up changes. It was just amazing and I would like to thank Chad for taking the initiative and the funds and treating me to a special night.

Archer continues to recover from his surgery and the Dr. says everything looks great. However he has developed a really strange stutter. I am not talking about a normal stutter that most children go through as they learn to talk. Archer really struggles to get the first syllable out. Usually his entire face contorts and you can see the tension build, sometimes for almost a minute, before he finally shouts out what he is trying to say. It is really heartbreaking. The Dr. told us that he would have trouble talking for awhile as he re-learns how to speak without having giant tonsils and adenoids obstructing his throat. For instance, he is starting completely from scratch with the "s" sound. I sent a letter to the Center For Children Who Stutter at Cal State Fullerton (where I was studying Speech Pathology) and the woman there told me not to worry until it has continued for 4 to 6 months. Meanwhile, she gave us some tips for helping Archer to cope with his stuttering. One of these is not calling him out on his behavior and ignoring the stuttering completely. By pointing the stuttering out we are telling Archer that we notice his problem, which in turn creates more frustration and anxiety in him, which causes the stuttering to worsen. Sometimes he just gives up even trying to speak and cries saying that he can't talk. It is very sad. Hopefully it will resolve itself.

Onto Della. Her MRI results are normal as well as her metabolic blood work. That is great news. We met with the geneticist and she took an extensive health history on Della as well as our extended family. Then she did a very detailed examination of Della. She measured her ears, the width of her eyes, noted that Della's second toe overlaps her third, counted the number of creases on her palms, I think you are getting the picture. She also added some blood work to look at Della's chromosomes. I also requested that she be tested for the genetic markers that predispose her to the cancer that I had. The Dr. told us about Fragile-X Syndrome and that there was about a 5% chance that this is what Della has. Basically it is one of the most common inherited causes of mental impairment. Fragile-X is also the number one known cause of autism. We should find out some results at the end of next week. I met with a genetic councilor which is pretty much a therapist with an extensive knowledge of genetics. She said that in cases like ours where a genetic disorder is being investigated, that parents are often counseled to hold off having more children until a disorder is discovered and often times this can take up to a year. If a genetic disorder is discovered then the rest of us are all tested. In the case of Fragile-X, it is a recessive disorder which would mean that both parents would have to be carriers. In our case, if Chad and I were indeed carriers, then we have a one in four chance of having a second child with the disorder. Remember biology and the Punnet Square? It is a very strange dilemma to be in. Of course Chad and I have not made a decision on whether or not to have another child, especially having had a baby born with special needs only 8 months ago. I would love to have another child, but as the genetic councilor said, parents of children with Fragile-X have a high percentage of having a second child with the disorder. So the question I find myself asking is, do we take that risk? Does a child with this syndrome deserve not to be born? Or do we look at it more like we shouldn't burden another child with this disorder? I know that we don't have to make a decision now, especially since we don't have all of the facts. However it has been weighing on my mind and I would love to hear some thoughts on it. If it Della does have Fragile X, I know that our decision will be based on serious thought and prayer.

Sometimes I have a hard time imagining myself volunteering for all of this! I am sure that things will get easier, or at least less hectic. We had 5 appointments last week and I was on the verge of a nervous breakdown! This week I cancelled all of our appointments and tried to just have a routine couple of days. Next week...physical therapy, immunizations, and a meeting with the Regional Center of Orange County to see if we can get some assistance in paying for her physical therapy. Her PT doesn't take our insurance and we have already spent $1,ooo since July! There goes our "nice" vacation money! We are trying to file a claim with our insurance to have some of it covered, they just aren't making it very easy. Oh well, kids are worth it!

In front of the Pantages Theatre. The picture below was taken from our seats inside the theater. The curtain was a map of OZ with The Emerald City in the center. The staircase to the left was used several times and we were really close to the actors.

These pictures were taken at Disneyland last Saturday. Above is Archer on the carousel and below is Archer with the Mouse himself. Archer told Mickey that he had just met his dog outside and that in case he had forgotten, his name was Pluto.

Eating a very blue jawbreaker. Thanks Dad.

Archer and Grandma sitting in the chairs Chad made.

Archer peeking over the wall he made at Dad's work.