Wednesday, November 23, 2005

genetics and the silent prince

Yesterday was spent taking the silent prince to doctors and hospitals. We began by taking him to the u-conn medical center in Hartford where we met with geneticists. They took our family history and examined the prince for 2 hours. We felt pretty positive about the 3 doctors who met with us. They were kind and interactive. They wanted to know if we had questions and really listened to us and then answered in ways we could understand.

I have a great respect for doctors. I failed biology in highschool; it baffled me. And then I had to take , what we called, baby-bio in order to get my science requirement for college graduation. But these doctors seemed un-typical.

There were 3 tests that they wanted for him. I can’t remember all the details of them. One test totally escapes my memory. The second test was a blood test that is given to newborns in the hospital and it looks for a whole host of diseases. CT tests for more things in newborns than any other state; 40 diseases. Another state does the same thing, but only tests for 3. we don’t know what jersey tests for… so it seemed like a very good idea.

The third test was for a genetic disorder called fragile-x, which happens most in boys because it affects the one x chromosome they have. Girls are less likely to have it because they have 2 x chromosomes.

When we asked what we should do if it was fragile-x the doctor said, “first you take a deep breath and then you come and talk to me.” As uncomforting as that sounds it was incredibly comforting coming from the doctor.

Finally we feel as though we are getting more answers. We were reminded that we might not get any answers, but at least there is more of a chance of them now then before. We want to know what makes our son special. The doctor even called him “charming.” Even if it’s awful knowing would give us a power that we don’t have now.

After the geneticists we made our way to the hospital where the prince stayed for two nights before we checked into the hotel. He needed to have blood drawn for a follow-up lead test. And then have the other tests drawn.

The people in the office didn’t do the test done on newborns, but they said they would try to get someone from labor and delivery do it for us. After they drew the blood they could take someone walked us up to the nicu, who were somewhat surprised by how old our “baby” was. They had to get a pa to do it for us. We sat outside the nicu and I held the silent prince on my lap… until my lap felt really warm; the prince had peed all over me. I looked as though I had wet myself.

One of the nurses took me to a couch and gave me baby blankets to lay him on to change him then offered to call up to peds to see if they had extra clothes. Hubby gave me his sweatshirt (so I could cover the pee). I told the nurse to tell the folks in peds that the prince said hi. (he had made an impression up there.)

Jim, the pa, arrived. We had met in peds and it was nice to see a familiar face. They took the test, which could have bee done downstairs and made sure all the paperwork was done properly. Again I told them how wonderful the staff at the hospital had been.

Saying thank you has become a profound and realistic way of acting out my faith.

Tomorrow is thanksgiving. We have hopes that we will be able to celebrate it at my parent’s home, which was tested for lead yesterday. But if not, the hotel has offered us a beautiful room to use for the 8 adults and 2 children (mine) who will eat together as a family.

This is the prayer my daughter will want to pray:
Come Lord Jesus, be our guest
And let these gifts to us be blessed.
Blessed be God who is our bread
May all the world be clothed and fed.
Amen.

But my prayer will be simple: thank you, thank you, thank you.

8 comments:

Jaded&Opinionated said...

Jadette was born in Philadelphia, so they tested for a whole host of things when she was born. (I don't know what NJ tests for, but PA tests for like twice as many things) Then she went through all of that genetic testing when we took her to the neurodevelopmental pediatrician in north Jersey. Fragile X was one of the things we were worried about, because it does happen in girls, just not as often as in boys. The waiting was horrific, but, everything was perfectly normal. It was a relief in one way, and a disappointment in another...

On one hand, there was nothing wrong with her physically...she is a perfectly normal child. But on the other hand...she still has so many battles to fight. It might have been easier to fight them with the knowledge that there was something specific wrong, if that makes sense. But, we fight the battles with her and for her because no matter what, she is the greatest gift I have ever received from God. I believe that He gave me a child with special needs because He knew I could handle it, and because He knew we'd do right by her. In many ways, it's an honor beyond description. Some people think I'm delusional because I believe that, but I do believe it.

I absolutely know what you're going through right now.

Your prince has you for parents because God knew you could handle it. He knew you'd do right by the prince, and make sure he received the best care. But above all, He knew the prince would be loved unconditionally. No matter what the test results confirm or don't confirm, just know that you have been given the greatest gift because God trusts you. That is something to truly give thanks for.

Happy Thanksgiving.

the reverend mommy said...

Prayers winging your way again today.

Steph said...

Good to hear that you have such great people working with you .... may things continue in as positive a way as possible. Blessings on your Thanksgiving.

megliz mommy to a diva said...

Hey everybody! There will be some major prayers and hopes for some answers coming your way. I feel like a bad friend though b/c we didn't get the email until later b/c it was in one of our rarely used mailboxes. Call if I can do anything.

Songbird said...

Thinking of you today, and your family. Bless you.

Sue said...

thinking of you and still praying...

lpt said...

Continued prayers coming your way.

Emily said...

A latecomer to this post but you have my prayers and good thoughts.

"and vivian followed."

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