RE: Update on us! (new baby, chicken pox, etc)

[Guest guest]

Congrats on the baby! Glad to hear the recovery period is going well. I am

sorry that your son is having a rough period lately though. I have gone

through chicken pox with 6 of my kids and they mostly went well, other than

for Asenath. Hope he quickly gets through them for you with no problems.

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

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

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

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

gastric emptying issues...

Zipporrah (17 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, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,

Update on us! (new baby, chicken pox, etc)

>

>

> Well since the baby was born 3 weeks ago, I have been pretty much

> AWOL!

> Tyler (new baby) is doing beautifully! he has put on a pound and a

> half since he was born 3 weeks ago! hes a bit jaundiced, but

> nothing their worried about. Overall he is a very healthy newborn.

> We will be seeing the mito doc at the end of april, and the plan is

> to start running the initial screening tests (carnatine, palmitate

> oxidation, CK enzymes, Lactic Acid, etc) on him then, to see if he

> is going to be affected or not.

>

> I am doing great! This recovery from having Tyler has been MUCH

> faster and easier than with ! I got an infection the week

> after he was born, and got VERY sick (temp of 106, felt like death!)

> then the antibiotics they put me on put me back in the ER

> (clyndamycin and me dont mix apparently), but since then I have been

> doing great! I feel wonderful, and dont even need naps anymore!

> its wierd having a newborn and being healthy... change of pace for

> me!

>

> Now ... its been a crazy while for him...

> Because of the chronic diharrhea he had from the cocktail we had to

> stop it on the 15th of February. The diharrea cleared up within 2

> days, so we know SOMETHING in the cocktail is disagreeing with him

> (its not the carnatine, as we stopped that 2 weeks before that and

> it didnt help). So now that his tummy has had a chance to settle,

> we saw the doc this morning, and will restart him on the cocktail

> very slowly next week and figure out which part of it specifically

> is bothering him (hes on 6 different things).

> In the meantime, the day after I got home from hospital after Tyler

> was born broke out in Chicken Pox!!! He weathered them

> pretty well, but were now on day 12 of them, and the doctor said

> this morning that they are still active, (still getting new spots)

> and that hes still contagious... normally they are supposed to be

> over after 6 days... he said its likely from the mito that their

> dragging on, but that he is getting better and the fever is gone, so

> hes not too worried... Now we just have to hope against hope that

> Tyler doesnt develop them!! the doctor said however that since im

> nursing, even if he does get them they will likely be quite mild, as

> hes getting antibodies from me... were hoping!

> Im just relieved that managed through them without a major

> crash (yet!)... his walking suffered, and his sugars were all over

> the place, but for the most part he is doing pretty good...

>

> So thats about it over here! busy busy!

>

> Hope everyone is doing well, Im off to catch up on some emails now!

>

> Keely, (mom to , 26 months-Complex 1, and Tyler, 3 weeks)

>

>

>

>

>

>

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

>

[Guest guest]

Keely,

I'm so glad to hear everything is calming down. What kind of timing is that

for to get chicken pox

as soon as you got out of the hospital, at least he's doing well and

hopefully Tyler won't get them too, like

you said, he is more protected now. Maybe was waiting until Mommy

got home, he wanted you

to help him through it. Congratulations on a healthy baby boy. Hope these

chicken pox don't last much

longer, I bet they're driving nuts.

Good luck,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/12/2005 1:55:20 PM

> Subject: Update on us! (new baby, chicken pox, etc)

>

>

>

> Well since the baby was born 3 weeks ago, I have been pretty much

> AWOL!

> Tyler (new baby) is doing beautifully! he has put on a pound and a

> half since he was born 3 weeks ago! hes a bit jaundiced, but

> nothing their worried about. Overall he is a very healthy newborn.

> We will be seeing the mito doc at the end of april, and the plan is

> to start running the initial screening tests (carnatine, palmitate

> oxidation, CK enzymes, Lactic Acid, etc) on him then, to see if he

> is going to be affected or not.

>

> I am doing great! This recovery from having Tyler has been MUCH

> faster and easier than with ! I got an infection the week

> after he was born, and got VERY sick (temp of 106, felt like death!)

> then the antibiotics they put me on put me back in the ER

> (clyndamycin and me dont mix apparently), but since then I have been

> doing great! I feel wonderful, and dont even need naps anymore!

> its wierd having a newborn and being healthy... change of pace for

> me!

>

> Now ... its been a crazy while for him...

> Because of the chronic diharrhea he had from the cocktail we had to

> stop it on the 15th of February. The diharrea cleared up within 2

> days, so we know SOMETHING in the cocktail is disagreeing with him

> (its not the carnatine, as we stopped that 2 weeks before that and

> it didnt help). So now that his tummy has had a chance to settle,

> we saw the doc this morning, and will restart him on the cocktail

> very slowly next week and figure out which part of it specifically

> is bothering him (hes on 6 different things).

> In the meantime, the day after I got home from hospital after Tyler

> was born broke out in Chicken Pox!!! He weathered them

> pretty well, but were now on day 12 of them, and the doctor said

> this morning that they are still active, (still getting new spots)

> and that hes still contagious... normally they are supposed to be

> over after 6 days... he said its likely from the mito that their

> dragging on, but that he is getting better and the fever is gone, so

> hes not too worried... Now we just have to hope against hope that

> Tyler doesnt develop them!! the doctor said however that since im

> nursing, even if he does get them they will likely be quite mild, as

> hes getting antibodies from me... were hoping!

> Im just relieved that managed through them without a major

> crash (yet!)... his walking suffered, and his sugars were all over

> the place, but for the most part he is doing pretty good...

>

> So thats about it over here! busy busy!

>

> Hope everyone is doing well, Im off to catch up on some emails now!

>

> Keely, (mom to , 26 months-Complex 1, and Tyler, 3 weeks)

>

>

>

>

>

>

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

>