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.

6 comments:

Ana said...

Try not to worry about everything...it is going to make you crazy. Archer's stutter will get better , Rocky's did. His stutter was so bad when he was a kid, but it went away with time.

I would try not to worry about having more children until you have all of the facts. I know if it was me, I would thank God everyday that I have two beautiful children and that if Della does have FXS that it isn't worse. I am not a gambler so I think I wouldn't have any more children, but that is just me. I would be afraid that the next child would be worse and that I could have prevented it.

Oh...PS...Rocky said that if Della has FXS she would be an XMan!! I thought that was so funny! :)

Amy said...

I applaud you for taking a week off to feel normal. To have some sort of say with your life. I know personally I felt with all the appointments that I had no choice. It was very hard and stressful. But things are better now with Tyler in the school district system. I know it was very hard on Nathan that Tyler had special friends come over two times a day to play with just him.
About the decision of more kids. We did not come to that conclusion easily. It was heart breaking. I wanted at least four, at least. And it does break my heart to know Mia is the last little baby. But I knew that I have all I can handle. Having more wouldn't be fare to my other kids. And the chances are so high for getting another Autistic child, I can't imagine having 2. Tyler has good days, and not too many bad days- but they are worse then I can even handle sometimes. So wait. When the time is right- be honest with yourself and you will feel good about your choice.
I'm proud of you and how well you are taking control and getting Della as much help as you can. Good job!!

Amanda said...

My first toe overlaps my second toe on my left foot. I never thought very much of it.

Kimberly Bluestocking: said...

Heavens - good luck with everything.

I agree with Ana about the family planning - don't worry about making a decision until you have a clearer idea of your options and their consequences.

Out of curiosity, though, have you considered adoption?

Bluebell said...

Oh, poor Archer! That must be frustrating, for both of you.

I don't think it would be wise to make a decision now on whether or not to have another child in the future, regardless of what other information comes in on Della and your genes, etc. God is in charge. He knows what you need and what you can handle, and maybe what you can handle now is different than what you will be able to handle in the future. I'm not saying that you should or should not have another baby. I'm just saying that right now is not the time to think about it. You shouldn't have to make that kind of decision during a time of such stress. My children don't have the kinds of issues that you and Amy are dealing with in your children and I still say every other day that I'm never doing this again because it just gets so intense sometimes. Being a mom is hard. I've decided to take it one day at at a time, one kid at a time. You never know what your life will be like in a few years time, or how you will feel about the status of your family when that time comes. Whatever you and Chad ultimately decide is obviously between the two of you and the Lord, and I'm sure that with "serious thought and prayer" you will reach which ever decision is right for you.

As far as your questions about whether or not you should burden another child with this disorder or whether a child like that deserves to be born--I personally have always felt that children like that are sent here to teach us to be more Christ-like. My understanding is that these kind of children are celestial spirits. So I wouldn't think of it in those terms, really. If you do end up having another child it will be born exactly the way Heavenly Father intends it to, and you will be blessed in turn with the capacity to care for your family and their needs, whatever they may be.

The Duke said...

One of the most brilliant people in the nation has a severe stuttering disorder. He's 65 years old. He works in a building with our nation's finest minds and he is very well respected. No one ever mentions his stutter—people just ignore it. I would do the same with Archer, even if it doesn't get better right away.