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.