Re: what type of shoes-

[Guest guest]

Hi ,

Thanks for asking about ! In my eyes is doing wonderful.

He's progressing, just at his own pace. He knows a lot of words but

just cannot verbally express them. So we are working with a

communication device to try and teach him how to communicate. We are

also using some sign and he actually partially signed the word " more "

the other day. He does say mama which is wonderful to hear but due

to his low muscle tone it's hard for him to use his tongue/lips to

form other words. This also affects his eating as does the GERD. He

still spits-up at 20 months but I'll take that because it was

projectile vomit up until a few months ago.

's eating is going a lot better. We started him on a medication

that increases the stomach motility and also stimulates his

appetite. He's finally drinking 6 oz. at a time. A few months ago

it was only 3 oz. a feeding and it would take 20-30 minutes to get

him to take that. Needless to say we fed him all day and would wake

him at night to get more in him. The doctors wanted to put a feeding

tube in and do a surgery called a Nissen Fundoplication which wraps

the stomach around the esophagus to help stop the reflux. However,

there are lots of problems with this surgery...it's only effective

50% of the time. Anyhow, since he's drinking more and starting to

gain we are no longer even thinking about the surgery. This has been

the best gift.

's kidneys are doing good as far as we know. The last MAG III

showed his left kidney was doing about 70% of the work. Hopefully

the hydronephrosis isn't damaging this kidney...as far as we know it

hasn't. has never had a UTI (knock on wood). The GU doctor

believes that had kidney reflux but it's now gone. We will

know for certain in June when we have a VCUG done to test the kidney

reflux. If there is no more reflux, then can get off of his

daily antibiotics. Also, it doesn't look as if the right kidney is

growing anymore cysts. We were also told that this kidney may

eventually shrink-up and only if it caused pain would it be removed.

receives Physical Therapy weekly, Occupational Therapy twice a

week, play therapy once a week, and Speech Therapy every other week

(soon to be weekly) and due to all this he is progressing very

nicely. The therapists are great and actually help more than most

doctors I'm very thankful for the team of therapists we have.

Also, I'm working with one of 's Occupational Therapists to

start a support group for children who have feeding difficulties due

to prematurity, medical issues, etc. So we are very excited about

this. I've learned that you learn the most from other parents who

are walking in your shoes. The doctors can be useful but a lot of

times the parents know as much, if not more, than the doctors...if

that makes any sense.

is also working on walking now...which is amazing because his

neurologist had told us in the beginning she didn't know if he

would. He's stubborn and determined...he makes me so proud.

Thanks again for asking! Feel free to ask me any questions about

him...I never mind talking about him

> >

> > Hi!

> > is suppose to have his DB (Dobb's brace) time reduced from

> > 23/7 to 14 hours on Friday. I'm curious as to what type of shoes

> to

> > buy him. 's Physical Therapist said to make sure the sole

was

> > flexible to help build his arch. So we went to Stride Right

> > yesterday and bought a pair of tennis shoes that velcro and have

a

> > flexible sole. However, the store also had walking shoes and I'm

> > thinking we should have bought some of those as well. Anyhow, I

> was

> > curious what types of shoes are best to use once the time is

> reduced.

> > Also, I had read that typically the time is reduced from 23/7 to

18

> > hours. Is it possible that 's will be reduced more because

> > he's older, stands and is working on walking?

> > I completely trust Dr. Dobbs, I was just curious.

> > Thanks!

> >

> > Proud Mom to

> > Before I made you in the womb, I knew you....God.

> > 20 months old, microcephaly, bilateral ptosis (repaired 1/04),

GERD

> > (and associated eating challenges), bilateral club feet

(tenatomy

> > 11/03 & 12/04), heart murmur, left kidney: hydronephrosis due to

> > Grade V reflux, right kidney: low functioning due to cysts on

> upper

> > 20%, undescended testes (corrected 9/04), possible milk allergy,

> low

> > muscle tone, global delays, undiagnosed syndrome...

[Guest guest]

,

I am so glad to hear that is doing so well and that therapy is

helping him so much!!! Nice that he is starting to sign too! A couple

of my friends are really into the baby signing thing, seems to be

pretty popular right now. What is the prognosis of the low muscle

tone and do they know what caused it?

So glad you guys are past some of the feeding hurdles with him!! Give

yourself a huge pat on the back!! That takes such dedication to feed

him like that instead of just opting for the surgery!

Good to hear his kidneys are functioning well, hope the VCUG goes

well, make sure to let us know the outcome! We were able to take

Grace off her daily antibiotics a couple of months ago, I think she

misses them, they tasted really good hehe!

I was also wondering about the GERD, will they be able to fix that? I

know it is usually caused by that *flap -not sure of the medical term

for it - that doesn't function properly and allows acid up from the

stomach. Hope they are able to do something about that poor lil guy!!

Great idea about the support group! It sounds like it is really

needed! Good for you!

Thanks for the update, what a little trooper, you must be so proud of

him!!!!!

& Grace

> > >

> > > Hi!

> > > is suppose to have his DB (Dobb's brace) time reduced

from

> > > 23/7 to 14 hours on Friday. I'm curious as to what type of

shoes

> > to

> > > buy him. 's Physical Therapist said to make sure the sole

> was

> > > flexible to help build his arch. So we went to Stride Right

> > > yesterday and bought a pair of tennis shoes that velcro and

have

> a

> > > flexible sole. However, the store also had walking shoes and

I'm

> > > thinking we should have bought some of those as well. Anyhow,

I

> > was

> > > curious what types of shoes are best to use once the time is

> > reduced.

> > > Also, I had read that typically the time is reduced from 23/7

to

> 18

> > > hours. Is it possible that 's will be reduced more

because

> > > he's older, stands and is working on walking?

> > > I completely trust Dr. Dobbs, I was just curious.

> > > Thanks!

> > >

> > > Proud Mom to

> > > Before I made you in the womb, I knew you....God.

> > > 20 months old, microcephaly, bilateral ptosis (repaired 1/04),

> GERD

> > > (and associated eating challenges), bilateral club feet

> (tenatomy

> > > 11/03 & 12/04), heart murmur, left kidney: hydronephrosis due

to

> > > Grade V reflux, right kidney: low functioning due to cysts on

> > upper

> > > 20%, undescended testes (corrected 9/04), possible milk

allergy,

> > low

> > > muscle tone, global delays, undiagnosed syndrome...

[Guest guest]

Hi,

compensates very well for his low tone. His is more on the

mild-moderate side. Things are just harder for him because of the

tone but he doesn't know any different which I have to remind

myself. 's low tone has improved since he was a newborn but

he'll probably always have low tone. We are working on his oral

muscles now. We have also found he doesn't use his abdominals too

much which is probably due to the GERD. The therpists are going to

start to work on this in the next week or so. The low tone is

related to whatever syndrome has. We are still searching for

a name although we are looking into one called Dubowitz. There is

no test for it. The doctors believe that may have a mutation

(where a piece of the DNA is flip-flopped within a particular

strand). has had numerous testing...all the chromosome tests

and a skin biopsy and everything is normal. However, there are new

tests being invented all the time. One doctor told me that 's

medical issues could have been caused by a small virus that I caught

during my first trimester. He said the virus could have just made

me had a little sniffle and I wouldn't have even thought anything of

it. I think the doctor just wanted me to realize that I didn't do

anything to cause it. The geneticists seem to believe that our

chances of this happening again is very small but since we don't

know what the cause is there is no way to test us to find out if we

are carriers. is our first and I wouldn't trade him for

anything but I don't know if I could do this again. I always feel

bad when I say that because I love so much and don't ever want

people to think I would have chosen not to have him because that's

not the case.

As for the GERD, I believe that due to 's low tone his

digestive system is also affected....making his esophageal sphincter

loose and also slowing down his motility. Sometimes would

vomit up a 3 oz bottle that he had drank 2-3 hours ago. Since his

low tone will always be there he will probably never outgrow the

GERD. However, as he grows his esophagus will become longer which

will make the GERD better. My biggest concern is that he's on

Prevacid three times a day and I don't want him on medicine forever

if possible. There's no telling what all this medicine is doing to

him. Plus, I think that making his stomach acid production slow

down must cause his motility to slow down even more. The stomach

acid is there for a reason. I did recently stumble across a

procedure called the Stretta procedure and it looks promising. The

FDS is looking into approving it for young children. A catheter is

put into his esophagus where it meets the top of the stomach. Then

radioactive waves are injected into the lining of the tissue causing

heat lessions. The heat lessions heal and cause the tissue to

thicken making it look more like a funnel. This then makes it

harder for the stomach contents to reflux back-up. This is an

outpatient procedure and I cannot find any bad side effects.

Actually many adults who have had it done are able to completey get

off their meds or reduce the amount. Of course, I really want the

GERD to be taken care of so he doesn't have to live with it. I had

acid reflux when I was pregnant and it wasn't fun. Although, I do

think his meds do a good job of controlling him feeling anything.

I'm happy that Grace is off her meds that's a great sign! IWas it

grape? hated the taste of his. When he had a NG tube

(feeding tube down his nose) we would squirt it in that but when we

were able to get rid of it we had to give it by mouth and he'd gag

on it. So finally we convinced the doctors to prescribe a pill and

we crush 1/4 of it per night and put it in his bottle. You would

think he'd taste it but he drinks it right up.

Take care!

> > > >

> > > > Hi!

> > > > is suppose to have his DB (Dobb's brace) time reduced

> from

> > > > 23/7 to 14 hours on Friday. I'm curious as to what type of

> shoes

> > > to

> > > > buy him. 's Physical Therapist said to make sure the

sole

> > was

> > > > flexible to help build his arch. So we went to Stride Right

> > > > yesterday and bought a pair of tennis shoes that velcro and

> have

> > a

> > > > flexible sole. However, the store also had walking shoes

and

> I'm

> > > > thinking we should have bought some of those as well.

Anyhow,

> I

> > > was

> > > > curious what types of shoes are best to use once the time is

> > > reduced.

> > > > Also, I had read that typically the time is reduced from

23/7

> to

> > 18

> > > > hours. Is it possible that 's will be reduced more

> because

> > > > he's older, stands and is working on walking?

> > > > I completely trust Dr. Dobbs, I was just curious.

> > > > Thanks!

> > > >

> > > > Proud Mom to

> > > > Before I made you in the womb, I knew you....God.

> > > > 20 months old, microcephaly, bilateral ptosis (repaired

1/04),

> > GERD

> > > > (and associated eating challenges), bilateral club feet

> > (tenatomy

> > > > 11/03 & 12/04), heart murmur, left kidney: hydronephrosis

due

> to

> > > > Grade V reflux, right kidney: low functioning due to cysts

on

> > > upper

> > > > 20%, undescended testes (corrected 9/04), possible milk

> allergy,

> > > low

> > > > muscle tone, global delays, undiagnosed syndrome...

[Guest guest]

,

Thank-you for the info, you explained it very well, I guess you have

had to become knowledgeble about a lot of things pretty quickly.

That procedure - Stretta - sounds interesing, hopefully it will be

approved for children in the near future. I wonder if there are

studies done on how patients fared in the years after the procedure

(there would probably have to be for them to have gotten intial

approval right?) and no side effects, sounds like a good option for

him.

Must be frustrating, not being able to have his condition diagnosed

and all those bloody tests UGH! And of course, you didn't do anything

to cause it!! But it is nice of your doctor to want to make sure you

remember that!

Crushing the pill into the bottle, great idea! Grace's antibiotics

were berry flavoured, she really did like it so I tasted it, it

tasted like berry ice cream to me, no wonder she liked it, it was

like a liquid dessert lol.

Take care and give your little man a big hug from us!

& Grace

> > > > >

> > > > > Hi!

> > > > > is suppose to have his DB (Dobb's brace) time reduced

> > from

> > > > > 23/7 to 14 hours on Friday. I'm curious as to what type of

> > shoes

> > > > to

> > > > > buy him. 's Physical Therapist said to make sure the

> sole

> > > was

> > > > > flexible to help build his arch. So we went to Stride Right

> > > > > yesterday and bought a pair of tennis shoes that velcro and

> > have

> > > a

> > > > > flexible sole. However, the store also had walking shoes

> and

> > I'm

> > > > > thinking we should have bought some of those as well.

> Anyhow,

> > I

> > > > was

> > > > > curious what types of shoes are best to use once the time

is

> > > > reduced.

> > > > > Also, I had read that typically the time is reduced from

> 23/7

> > to

> > > 18

> > > > > hours. Is it possible that 's will be reduced more

> > because

> > > > > he's older, stands and is working on walking?

> > > > > I completely trust Dr. Dobbs, I was just curious.

> > > > > Thanks!

> > > > >

> > > > > Proud Mom to

> > > > > Before I made you in the womb, I knew you....God.

> > > > > 20 months old, microcephaly, bilateral ptosis (repaired

> 1/04),

> > > GERD

> > > > > (and associated eating challenges), bilateral club feet

> > > (tenatomy

> > > > > 11/03 & 12/04), heart murmur, left kidney: hydronephrosis

> due

> > to

> > > > > Grade V reflux, right kidney: low functioning due to cysts

> on

> > > > upper

> > > > > 20%, undescended testes (corrected 9/04), possible milk

> > allergy,

> > > > low

> > > > > muscle tone, global delays, undiagnosed syndrome...