Re: - Anyone deal with hydrocephalus?

[Guest guest]

Well actually we have Asenath, Marquis, Zipporrah, Joey, and his twin

who arrives on Sunday, which makes 5 in diapers. Also of interest

is the fact that there is 6 under 5 years of age.

It has been a very interesting week getting used to the new members.

Joey has adjusted very well amazingly, but if you consider he has been in

and out of hospitals quite a bit since September, it isn't as surprising.

will move in permanently Sunday and she hasn't had any health

issues since infancy that we know of so I am sure she is pretty attached to

her former care givers. We hope she adjusts quickly and think Joey will

definitely help the transition for her.

Joey has quite a bit of set backs as he has more issues other than

hydrocephalus but he is doing better than we initially thought so we are

pleased. The biggest problem is the hospital he goes to has been having

problems to get his shunt working properly and has had 4 operations since

September when they first placed it. He just came home two days ago and the

shunt area is swelling ALREADY! Not sure if the surgeon isn't doing well or

if there are complications that are making it hard for him. If your friend

is willing to talk via phone or e-mail could you let me know. I really

would like to talk to some people with shunt experience.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

RE: Anyone deal with hydrocephalus?

> Darla,

>

> I personally have no experience with hydrocephalus, but Gracies " playgroup

> buddy " has it. He is 2 years old now and really has no major setbacks

> from it at all. His mother stated that his only restrictions are to try

> to avoid head trauma (taking into account that they will bang there head

> as part of a toddler ritual) until he is kindergarten age, then after that

> his only lifetime restriction would be to never scuba dive. This little

> boy is active healthy and totally boy!

>

> Next time Grace has speech I will get a website for you. It is a book to

> explain chunts and hydrocephalus to children. This maybe really helpfull

> to you in explaining his condition to the other kiddos. I noticed it once

> before as it caught my eye when my neice was thought to have hydocephalus.

> (Thankfully she just has a big head!!)

>

> Best wishes, and good luck........Is it 4 in diapers now??? Wow

>

>

>

>

>

>

>

>

--------------------------------------------------------------------------------

> Do you know all the things you can do with a Hotmail account? Click here!

>

> Please contact mito-owner with any problems or questions.

>

>

>

>

--------------------------------------------------------------------------------

>

[Guest guest]

Well actually we have Asenath, Marquis, Zipporrah, Joey, and his twin

who arrives on Sunday, which makes 5 in diapers. Also of interest

is the fact that there is 6 under 5 years of age.

It has been a very interesting week getting used to the new members.

Joey has adjusted very well amazingly, but if you consider he has been in

and out of hospitals quite a bit since September, it isn't as surprising.

will move in permanently Sunday and she hasn't had any health

issues since infancy that we know of so I am sure she is pretty attached to

her former care givers. We hope she adjusts quickly and think Joey will

definitely help the transition for her.

Joey has quite a bit of set backs as he has more issues other than

hydrocephalus but he is doing better than we initially thought so we are

pleased. The biggest problem is the hospital he goes to has been having

problems to get his shunt working properly and has had 4 operations since

September when they first placed it. He just came home two days ago and the

shunt area is swelling ALREADY! Not sure if the surgeon isn't doing well or

if there are complications that are making it hard for him. If your friend

is willing to talk via phone or e-mail could you let me know. I really

would like to talk to some people with shunt experience.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

RE: Anyone deal with hydrocephalus?

> Darla,

>

> I personally have no experience with hydrocephalus, but Gracies " playgroup

> buddy " has it. He is 2 years old now and really has no major setbacks

> from it at all. His mother stated that his only restrictions are to try

> to avoid head trauma (taking into account that they will bang there head

> as part of a toddler ritual) until he is kindergarten age, then after that

> his only lifetime restriction would be to never scuba dive. This little

> boy is active healthy and totally boy!

>

> Next time Grace has speech I will get a website for you. It is a book to

> explain chunts and hydrocephalus to children. This maybe really helpfull

> to you in explaining his condition to the other kiddos. I noticed it once

> before as it caught my eye when my neice was thought to have hydocephalus.

> (Thankfully she just has a big head!!)

>

> Best wishes, and good luck........Is it 4 in diapers now??? Wow

>

>

>

>

>

>

>

>

--------------------------------------------------------------------------------

> Do you know all the things you can do with a Hotmail account? Click here!

>

> Please contact mito-owner with any problems or questions.

>

>

>

>

--------------------------------------------------------------------------------

>