GREAT NEWS - A call from Dr. Ponseti

September 15, 2005

OH AMANDA I AM SOOOOO HAPPY FOR YOU! Yes, Dr. P is a " Precious " man, so true!

He called me at home five years ago, and I too was in awe from the first

conversation. I promise you will NOT regret this!!!! I'm such a sap, I wish I

could go with every new parent to their first Dr. P appointment.

Listen I know you have a lot of details to work out pretty fast but take a

minute here cuz I have some ideas for you.....- keep trying the Angel Flight

people. They are mostly volunteers so not " on the clock " to answer phones a lot

of time. Leave messages if need be and keeep trying. OH - I think there is a

50 pound baggage limit on the plane.

Once you are in Iowa City - the RMD is pretty nice. If you don't get in right

away, it is usually only a day or two you wait for a room and there are discount

motels. The motels I've had to stay in were always so darn nice it hurt,

shuttling me to stores and doc appts when needed. Find a nice young baggage guy

to be-friend and he'll drive you anywhere you need to go.

Once you are at the RMD - hey, no need to sit around all day every day between

appointments. There is a CamBus (campus bus, this is a college campus hospital)

stop across the street in that big parking lot, the bus runs about every 15

minutes and is free to ride. USE IT! It can take you down town to play -

Iowa City has a very nice down town area, street mall - to walk, hang out, visit

nice shops; there are muesums and a regular mall down town, a movie theatre.

Pack yourself a pic nic and catch the bus. You may as well enjoy yourself while

you are there, kwim? It is one of teh friendliest towns I've ever been to.

When you need groceries the RMD staff can drive you to the store, and often to

Wal-Mart or other places you may need. Don't count on needing much food, their

cupboards are crammed with food, shampoo, everything except perishables - and

often there is left over milk and stuff from parents who left which is still

good to use.

They can drive you to the hospital too but myself I used the CamBus for that

because it was more reliable and generally less time to wait going and coming

back. It can drop you right outside your clinic door and pick you back up on

their 15 minute schedule easily so you don't have to wait on a volunteer's

schedule which usually aren't so easy.

There is a huge mall in Corriville (?), which is basically an extension of Iowa

City if you're in to mall shopping. A city bus can take you and often other

parents go or a volunteer can take you.

On Tuesday nights my dear friend Jim Gulland volunteers at the house, he can

help with anything you might want or need, including the bus schedule and

places to go visit. The house itself has a great play ground out side and

little nature trails to walk out back to get some fresh air and alone time.

There are no TV's in the bedrooms. If that's an issue for you, take your own

TV. If you are pumping breast milk, they'll give you a small frig in your room

to store it. Their opinion is that they don't want grieving parents locked away

in solitude watching TV all day and night going crazy - they promote interaction

so parents with sick babies don't end up so depressed sitting alone in the dark.

There is a laundry room too, free machines, free soap. They usually have baby

buggies in the basement you can borrow, and cribs.

On the flip side to all of this, be prepared to hear some of the saddest stories

in your life and to cry once in a while at the stories, the photos, the other

little kids you might see with grave illnesses. I guarentee staying at a RMD is

a life altering experience; you won't come away from it the same person you went

in as. It's impossible, the mix of both horror and hope there....wow. It can

get heavy and yet you see the miracles and the strength and you feel guilty your

kid only has club feet while that kid has brain cancer.

Lets' not dwell on that - you'll make your own discoveries. Can you tell I

spent a lot of time there with my two kids!? LOL! I just love to tell everyone

how nice it is there and all the things there are to do instead of sitting

around going bonkers all week between appointments. They hold a lot of

activities in the house, too - take advantage of them! We had pumpkin painting

and cookie baking/decorating last time we stayed (around halloween). You will

suddenly have a huge family, embrace them.

Keep us posted! There is computer acess there, you can write us from there, oK?

ee

GREAT NEWS - A call from Dr. Ponseti

GREAT NEWS - WE ARE HEADING TO IOWA for an appointment Monday, the 19th.

(BL CF) has been treated here in Little Rock, Arkansas under a doctor

who is trained but not certified in the method. We starting the method back on

June 23 when my son was 12 days old. On July 28th we went into the DBB/Markell

shoes. They would not stay on his feet. So we tried another brace which was

even worse. So I went back to the doctor very upset and they placed another set

of cast to fix his relapse and to put back on the DBB/Markell which I knew would

not work. I had watched my tiny son just cry and scream for weeks and I had

enough. So I found this group and starting researching and after speaking with

Kori (who is so helpful and awesome) I decided to email pics and tell me story

to Dr. Ponseti. I really did not know what to expect from it other than maybe

some advice or something. I emailed on Sunday, the 11 and at 5:00 pm I received

a call from Dr. Ponseti himself. I was in awe.

What a precious man. He told me to bring my son to him and he would fix him.

Luckily I made it through our conservation before I starting just crying. I

thought finally my precious boy will get the correct treatment for him.

According to Dr Ponseti it looks as though has atypical BL CF and the

DBB/Markell shoes won't do the trick so we will need the P/M set up.

So we are trying to get everything figured out. We will be in Iowa for at least

two weeks as it is to far to travel back and forth and I can get no one to call

me back from Angel Flights. Hoping the RM House has a spot for us since we will

be there for so long.

Anyone have an appointment during the next two weeks?

has am album under photos with the DBB and the other brace that was

made for him.

proud mommy to BL CF

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September 15, 2005