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.

taking a brain break

in an attempt to take my mind off all that's going on in my life here's the friday five (a little late, but i've been busy)

1) Earliest book you remember (read to you or by you)
cinderella, but my favorite was courderoy

2) Picture Book you would like to climb into
goodnight moon

3) Favorite series of books (then or now)
oh the chronicles of narnia of course (can't wait for the movie!)

4) Character you would most like to meet
morgan la fey from the mists of avalon or merlin from the once and future king

5) Last childhood book you re-read (for yourself or to someone)
there are always so many i can never remember

and you?

waiting

we are waiting for the department of health to show up and talk us through what we are going through.

the queen gram is watching the silent prince at the hospital. thank God for my parents.

and in the meantime... thank God for all of you in my cyber community. i am overwhelmed by the prayers and encouragement from everyone.

so very, very thankful. so know that while you pray for me that i am praying prayers of thanksgiving for all of you. i feel strong and it's because i know that God is hearing you caring for me and my sweet, sweet boy.

like a LEAD brick

my silent prince has lead poisoning.

for quite some time now we've asked his doctors if he should be tested for lead and none have ever really agreed to it... giving us other rationale for why he is the way he is.

back during the summer hubby once again asked our new doctor if we could have him tested for lead and the doctor recommended a geneticist. we scheduled an appointment... the soonest it could be done was next tuesday. about 4 months later.

but the prince has been having tummy trouble at school; the explosive kind and the school nurse asked if we had ever had him tested for lead. hubby gave her the doctor's name and she agreed to call and request the test. and so i took my brave little prince to get blood drawn on monday.

they called today and he's been admitted to the hospital. the treatments are easy: medicine taken orally. but he will have to stay there until he can be released to a lead free environment. this means that the board of health will be at our place tomorrow to interview hubby and me and then set up an appointment to test the house for lead.

there is a very good chance that we have it. there is also a chance that he was exposed to lead when we lived in jersey. and a chance that both are true. if the lead got into his system back in jersey then there is a good chance that this is what has been causing his developmental delays. this means that the treatments will only help him and there is no way to describe my joy in that.
of course if the house has lead we will have to put all our belongings in storage while the house is renovated. it might even be in our pipes. and that will suck. thanksgiving was going to be here; my first ever holiday hosted in my home. our lives will be in chaos again this christmas (since we were moving here last christmas and didn't even put up a tree at the old house.)

but, i now know the worst case scenario and i'm ok with it. and the best case scenario... well the silent prince might need to be renamed because he won't stop talking. and i can handle that, oh can i handle that.

so, i ask for your prayers that God (or whichever deity you call upon) will bless us with the best case scenario and take us through this time and bring us to an even better place.

interpreting calvary

now that i have a car with a cd player i dug up all my old cds to play when the radio isn't giving me anything good.

i've learned 2 things from this experience

1. i need some new music
2. i have fallen in love with one particular song that i never payed much attention to in the past

here it is:
Indigo Girls - Strange Fire
i come to you with strange fire
i make an offering of love
the incense of my soil is burned
by the fire in my blood
i come with a softer answer
to the questions that lie in your path
i want to harbor you from the anger
find a refuge from the wrath
this is a message
a message of love
love that moves from the inside out
love that never grows tired
i come to you with strange fire
fire
mercenaries of the shrine
now who are you to speak for god
with haughty eyes and lying tongues
and hands that shed innocent blood
now who delivered you the power
to interpret calvary
you gamble away our freedom
to gain your own authority
find another state of mind
you know it's time we all learned
to grab hold
strange fire burns
with the motion of love
fire
fire
when you learn to love yourself
you will dissolve all the stones that are cast
now you will learn to burn the icing sky
to melt the waxen mask
i said to have the gift of true release
this is a peace that will take you higher
oh i come to you with my offering
i bring you strange fire
this is a message
a message of love
love that moves from the inside out
love that never grows tired
i come to you with strange fire
fire
fire
I come to you with strange fire

just beat them over the head

as part of my nightly routine monday through thursday i like to watch the daily show and then the colbert report (prounced colber repor) before turning off the lights and snuggling into my pillows.

last night stephen colbert had cokie roberts as his guest and he asked about life in washington dc. cokie described it as nasty and likened it to the days prior to and during the civil war when politicians would cane one another.

colbert, always the devil's advocate, asked her what could be done about the nastiness of today, was it even worth trying to change...

cokie (who i take seriously despite the fact that she calls herself cokie) said that yes, it was worth trying to change and that the way it could be done was by putting new people in power, but that would be difficult because of districting which has created a status quo where politicians are allowed to pick voters rather than voters picking their politicians.

she reminisced about the days when the people in power could be nice to one another. they were able to disagree but still get along... they went to dinner together, attended church together, socialized with one another. but now-a-days our political process has become so partisan that it's more fun for politicians to not like each other.

so what do we do about it? colbert asked.

and cokie's reply? "well, we could beat them over the head."

to say that i laughed at that would be an understatement. i'm surprised that i didn't wake hubby who was already asleep next to me. i actually wanted to stand up and cheer.

it has become more fun to dislike other people. i see the same thing in the church; people who have learned to dislike one another trying to make decisions together and it just doesn't work.

debate turns into argument and every disagreement or misunderstanding becomes personal attack.

and people who should care for one another turn situations into us verses them and them verses us.

hmmm... jesus says that we are supposed to turn the other cheek, but i wonder if there is any biblical support for cokie's suggestion of beating "them" over the head?

well, here's a stretch: jesus never backed down from a fight... of course he never used his fists or canes for that matter, but he also never avoided conflict or failed to use it to preach the good news.

fact is we don't all need to like one another, but we DO need to find ways to respect others again. it needs to happen in politics and in the church in our work places on-line and in every other aspect of our lives.

and there it is.

big brother is watching and charging for it

LOS ANGELES, California (AP) -- The Internal Revenue Service has warned a prominent liberal church it could lose its tax-exempt status because of an anti-war sermon a guest preacher gave on the eve of the 2004 presidential election, church officials say.

more here.

i could get into SOOO much trouble. perhaps i will.

where's the sermon?

right here.

we the people

i have become a very big fan of abb and read her daily. the story she tells here is well worth making yourself a fan as well.

thank you again shark-fu

SEPTA strikes or resurrect rosa

one of the members of my church now attends college in philly, where i am from. i like that he's there because i get philly updates; i am and always will be a philly girl at heart. i just got an email from him that said SEPTA or the southeastern pennsylvania transportation authority, has gone on strike.

i remember septa being on strike when i was a senior in highschool. highschools in philly, unlike grades k-8, did not get yellow school buses and so we either received rides to school or had to take public transportation to commute for our education. some highschools gave students tokens (10 per week to cover the trip for 5 days) or you had to purchase them at student prices (which i did). purchasing was the way to go. if you were sick or lost a token they didn't help you out by giving you an extra and then you had to find someone to sell you one.

the strike was awful. i remember one friend who had to leave her home before 5 AM to commute to school by taking the trains (at least they still ran) and walking a long way in order to keep up her perfect attendance record. i can't remember how long the strike lasted ~ 2 weeks, maybe more. i just remember what it did to us kids in highschool who didn't have access to a car.
the day i stopped needing to take the bus was the day i stopped using public transportation (except for a few trips to NYC or to visit the boston pobble and when using the T is the best way to get around the city). i always hated the bus and the subway. it never failed to be late when i was in a hurry, or jam packed when i was exhausted and would have paid for a seat (which i had since it wasn't free). i hated watching bus after bus go by because they were full and people were pressed (illegally) up against doors.

and i always felt guilty as i drove by bus stops packed with cold, wet, and tired people waiting to go to work or home because i knew that i was blessed with a nice, warm, non-sardine-like car.

last night on the daily show the guest was d.l. hughley. they showed a clip from his new show where he talked about the death of rosa parks. he spoke with reverence when he talked about how she had made such an impact on our society because she had refused to give her seat to a white man. "look how far we've come." he said. "white men used to take the bus."

and there it is. who will be affected by this strike: the poor and the young.

i don't believe in reincarnation, but God, do you think you could send rosa back?