Re: to cynthia and marilouise

September 8, 2004

Hi ,

These babies do go through alot...we do too! I sometimes think it's

harder on us to see them going through it than it is on them...they

are so resiliant! So sorry to hear about your little one's cracks

behind his knees! I am keeping polysporin on Grace's cracks are you

using anything on Christian?

My daughter had soft casts, the one's that they moisten then they

harden after they are wraped into place, our Dr. also said that this

way he can manipulate the foot more precicely. I guess a lot of kids

are put into hard casts from what I have been reading, I wonder why?

I hope his little leg heals fast!! Grace's leg looks so much better

and it has only been 2 days!

, Gilles and Grace (8/21/04)

Marilouise, Thank-you for the tip on using Aquaphor, I hadn't even

heard of this product. I was sorry to hear that your little one has

had to go through so many casts and procedures! Tell me, is your

doctor using the Ponseti method? I am finding out that my little

Grace hasn't really had it that bad in comparison...she was put into

her first cast on July 25th - 5 days after she was born. Using the

Ponseti method, she didn't have to have the tenotomy (hopefully that

does not change with the week out of casts) and wore 5 casts to get

her into proper alignment.

I am very glad to hear that 's heart is doing well! It is a

real challenge to have a club foot on top of another complication, we

found it a bit overwhelming for the first few weeks, my husband has

been the one to keep upbeat and keeps reminding me that this is

a " fixable " problem. As far as we know, Grace's kidney seems fine, we

have an appointment with a specialist but it is not until the 9th of

November - you know how hard it is to get in to see a specialist,

especially when they have to coordinate tests with the appointment.

Keep me posted on 's progress, I hope she dosen't need anymore

casting!

, Gilles & Grace (8/21/04)

T

> > Hello,

> >

> > Our daughter Grace was born on July 21st 04 with one kidney and a

> > club foot...with all the attention in utero paid to the kidney

> > situation, her club foot was not diagnosed thus was quite a shock

> to

> > her dad and me.

> >

> > I had never really heard anything about club foot before, I think

> we

> > were really lucky to have had our daughter at the Royal Columbian

> > Hospital in New Westminister BC as there is a Ponseti certified

> > Orthopist practising there - Dr. Pirani.

> >

> > He was away temporarly at the time of her birth and as I didn't

> know

> > if it would be OK to wait a few days, we brought her to

Children's

> > Hospital to get her first cast on. It was in retrospect an

> upsetting

> > experience - I cried the whole time.She was placed naked on a

> > hospital bed for the cast to be done so of course, screamed

> > throughout the whole thing and the cast was done without the

> > supervision of the attending Doctor. They used a thick batting

> under

> > the cast, not the cotton sleve used by Dr. Pirani, thus the first

> > cast was not accurate.

> >

> > We are so glad that we decided to go and see Dr. Pirani, Grace is

> > casted while sitting on my knee, I have even nursed her while

> being

> > casted.

> >

> > We have had a bit of a problem with the last cast (the 3 week

> cast).

> > She had been extra fussy and then a few days ago began to lift

her

> > little leg and really cry. Her dad noticed that her toes were

> really

> > squished...we didn't want to remove the cast before tuesday

> afternoon

> > as we didn't want to impeed her progress. Yesterday (tuesday)

> morning

> > I finally decided that we needed to remove it as I could not get

> her

> > to stop crying. Her whole calf was purple and she had three

> creases,

> > the largest being on the top of her foot where it joins the leg,

> this

> > one was leaking fluid. We immediatly took her to her doctor who

> said

> > we could use polysporyn on her creases and to keep her leg moist

> with

> > lotion. He said that the creases would most likely not get

> infected

> > as she is on a mild anitbiotic for her kidney. We saw Dr. Pirani

> that

> > afternoon, (he came in on his vacation to see Grace), he said

that

> > she strained in her cast and had a bit of a growth spurt. We

> decided

> > to wait until next Tuesday to put her into the boots and bars as

> her

> > little leg needs time to heal. I hope we don't need to cast her

> > again!!! Dr. Pirani showed us an excersize (holding her knee

North

> > and holding her foot East for 10 min.) that we will do twice a

day

> > with her.

> >

> > Before she had the 3 week cast put on, Dr. Pirani said that she

> would

> > probably not need to have her tendon cut as the casting was going

> so

> > well. We will find out next Tuesday if she needs to go into

> another

> > cast...has anyone else had a similar experience with the 3 week

> cast?

> > And if so, how long did the creases take to heal? I really don't

> want

> > the big crease on the top of her foot to heal improperly and tear

> > when she moves her foot, it looks so painful!

> >

> > Any advise would be appreciated.

> >

> > Thank-you

> >

> > , Gilles and Grace

>

September 9, 2004

,

You have a very good point about it being harder on us to see them going

through this than it is on them (assuming they're receiving the proper

treatment!)...

Dr. Nom Bor from Israel who trained under Dr. Herzenberg was at the

symposium last Saturday with his wife, Naomi, who is a psychologist. She

gave a presentation about the psychological impacts of clubfoot. I had

thought it would be from a child's perspective, but when she spoke she spoke

about her study which involved interviewing lots of families with children

who had clubfoot.

She mostly spoke about and quoted what the moms and dads in Israel had to

say. Basically, she said some parents will handle everything OK, but some

parents may need counseling to handle their feelings of loss, sadness,

anger, etc. Doctors should be aware of this because the way the parents

respond to the child will impact the child's perceptions of herself and what

having a clubfoot means to the child. If the parent is so distraught or

depressed about the situation, it could impact the attachment between the

parent and child. She interviewed families where the husband said the reason

he left the family was due to the child being born with clubfoot. The

parents' feelings could also impact the compliance with the use of the

brace... There have been nights when Zoe was sick and miserable that I have

felt so bad for her I have removed the brace so she could sleep better.

Some of the mother's comments were heartwrenching. I think Dr. Bor will be

continuing with her research on this topic...

Best, Joanne

Message: 4

Date: Thu, 09 Sep 2004 03:56:35 -0000

Subject: Re: to cynthia and marilouise