Re: / local magazine / novella

[Guest guest]

I know the magazine has a website (pcwsn.com).

If you are comfortable with it I could mail you a hard copy of it when then next issue comes out with the updates resource list.UpdateNovella is doing good. She will be one year old on April 9th. My hope is she will be a 'sturdy sitter' and weigh 17 lbs...she only weighs 15.2 right now.

Sooo skinny. She has trouble keeping her food down when she eats. She has to wear her brace for 20 hours a day so it has been tough with feedings but other than that she does not mind the brace. We are currently bracing and seeing where she is at in 3 months. Her curve is somewhere between 30 and 40 as of last appt at the end of January. Our ortho said if her curve as under 30 after being brace free for 24 hours then we could do a trial run of only night time bracing and see what happens. If her curve goes back up we will start casting right away or as soon as she is at the right stage of development for her age. Her brace is unlike anything I have seen before. It has a 'floating' pad that pushes on the side toward the back. The brace guy and our ortho said

it can correct curves because it acts similar to the cast..not getting my hopes up but I do think her back looks better.(any thoughts??) However, it could be because she has PT twice a week and OT twice a month. She is getting stronger. For those that do not know, Novella was in the casting process from age 4 months to 8 months in a combo EDF/spica so her mobility was severely hindered. When she came out of the cast the state PT said she was at the developmental age of a 3 month old. However, this might not have been the case if she did no have a connective tissue disorder. We also did genetics testing a couple weeks ago after an MRI showed her spinal fluid was not being held in the correct place. We should hear back any day now. (marfans, LDS and other back up testing if those both come back negative). She our angel! So strong and so tough.XoxoAli

[Guest guest]

Hey,How are you little one's hips now?? My son Thaddeus may need a combo cast soon he is 2 so I worry about how he will get around. Did you have a hard time diapering? He also has a clinical DX of beals syndrome( sister syndrome to marfans) I think he may have something else but we haven't gone back for his 2 year assesment yet. Any info/ advice about the combo cast would be great mommy to Thaddeus Sent from my iPhoneOn Feb 17, 2011, at 11:19 AM, Troy Willmann <troy.willmann@...> wrote:

I know the magazine has a website (pcwsn.com).

If you are comfortable with it I could mail you a hard copy of it when then next issue comes out with the updates resource list.UpdateNovella is doing good. She will be one year old on April 9th. My hope is she will be a 'sturdy sitter' and weigh 17 lbs...she only weighs 15.2 right now.

Sooo skinny. She has trouble keeping her food down when she eats. She has to wear her brace for 20 hours a day so it has been tough with feedings but other than that she does not mind the brace. We are currently bracing and seeing where she is at in 3 months. Her curve is somewhere between 30 and 40 as of last appt at the end of January. Our ortho said if her curve as under 30 after being brace free for 24 hours then we could do a trial run of only night time bracing and see what happens. If her curve goes back up we will start casting right away or as soon as she is at the right stage of development for her age. Her brace is unlike anything I have seen before. It has a 'floating' pad that pushes on the side toward the back. The brace guy and our ortho said

it can correct curves because it acts similar to the cast..not getting my hopes up but I do think her back looks better.(any thoughts??) However, it could be because she has PT twice a week and OT twice a month. She is getting stronger. For those that do not know, Novella was in the casting process from age 4 months to 8 months in a combo EDF/spica so her mobility was severely hindered. When she came out of the cast the state PT said she was at the developmental age of a 3 month old. However, this might not have been the case if she did no have a connective tissue disorder. We also did genetics testing a couple weeks ago after an MRI showed her spinal fluid was not being held in the correct place. We should hear back any day now. (marfans, LDS and other back up testing if those both come back negative). She our angel! So strong and so tough.XoxoAli

[Guest guest]

Sorry it took me a few days to respond. Novella's hip now are getting better.

She only has to wear her ifeld brace at night time and we go back in April which

was 3 months out from out last visit. Our ortho said it looks like we have

avoided any more casting or surgery with her hips as long as she keeps

progressing like she is. We are thrilled with that because we have other things

to focus on now. Who would have thought when Novella was born and diagnosed with

bilateral hip dysplasia that it would be the least of our problems. Her hips

still click when she moves them occasionally but our ortho said that is not a

concern. She is almost 11 months old now. I have pictured up in this groups

photo area of Novella in her combo cast. Her cast was essentially a full body

cast so even if she was developmentally able to walk she would not have been

able to. It is nice to have a visual of what the cast actually is so please look

at the pictures. When Novella was being casted in the combo I believe she was

one of very few to have this done so the information and pictures out there

prior to her casting was slim to none. Please feel free to ask me any direct

questions. I was very scared and concerned but come the 2nd and 3rd combo cast

it becomes " normal " . The combo cast was our new reality and everyone in our

family, extended family, friends and Novella all adjusted fine. Novella was 4-8

months old in her cast so Thaddeus may have a different journey in his combo

cast. Diapering is a struggle at times. I was a wreck the first few times

Novella got the cast messy. Don't stress yourself out because it is going to

happen. We did the best with a small diaper (size 1 or 2) tucked in the cast all

the way around in a circle so no edges were showing. Then we put a large diaper

on " regularly " over the cast. Does this make sense? People do all sorts of other

techniques but this worked for us. We just changed her often. Feeding was also

an issue with Novella. The cast is pretty tight so Novella would throw up if she

was over fed or fed too closly together so I had to watch for that a lot. If

Thaddeus does end up needing a combo cast I would encourage you to join the

hip-baby group and also visit " hip-baby.org. There will be tons of

information about spica casting and diapering techniques. Also, how to entertain

the child and positioning. They have these chairs called " Spica-chairs " that are

for the older children in the cast. I have heard great things about them and the

blog moms usually just pass them around as needed from family to family. It was

a life saver for us as well as this group! Hang in there! xoxo

Ali

>

> > I know the magazine has a website (pcwsn.com). If you are comfortable with

it I could mail you a hard copy of it when then next issue comes out with the

updates resource list.

> >

> > Update

> > Novella is doing good. She will be one year old on April 9th. My hope is she

will be a 'sturdy sitter' and weigh 17 lbs...she only weighs 15.2 right now.

Sooo skinny. She has trouble keeping her food down when she eats. She has to

wear her brace for 20 hours a day so it has been tough with feedings but other

than that she does not mind the brace. We are currently bracing and seeing where

she is at in 3 months. Her curve is somewhere between 30 and 40 as of last appt

at the end of January. Our ortho said if her curve as under 30 after being brace

free for 24 hours then we could do a trial run of only night time bracing and

see what happens. If her curve goes back up we will start casting right away or

as soon as she is at the right stage of development for her age. Her brace is

unlike anything I have seen before. It has a 'floating' pad that pushes on the

side toward the back. The brace guy and our ortho said it can correct curves

because it acts similar to the cast..not getting my hopes up but I do think her

back looks better.(any thoughts??) However, it could be because she has PT twice

a week and OT twice a month. She is getting stronger. For those that do not

know, Novella was in the casting process from age 4 months to 8 months in a

combo EDF/spica so her mobility was severely hindered. When she came out of the

cast the state PT said she was at the developmental age of a 3 month old.

However, this might not have been the case if she did no have a connective

tissue disorder. We also did genetics testing a couple weeks ago after an MRI

showed her spinal fluid was not being held in the correct place. We should hear

back any day now. (marfans, LDS and other back up testing if those both come

back negative). She our angel! So strong and so tough.

> > Xoxo

> > Ali

> >

> >

>