Re: Tonsils Coming Out...New Pain...and Coping with Family ()

[Guest guest]

,

I will be thinking of you. I know how hard it is to have two kids down at the same time. It is not easy. I am glad they will keep Lexi too, that will help you. It is better to have them in the same place at the same time.

My oldest daughter is non affected too. Or so we all believe right now. She has odd things that happen to her, but not enough that they will go digging any further. Mikaela almost never gets sick, though she has muscle pain that is frequent. Otherwise, she is in perfect health. Only one maybe two colds a year, and very minor.

It is nice hearing that there is another mom with a non affected child. It seems so rare.

Lets brave this countdown together, I am sure we are both feeling the same things right now.

Hugs

Mistysarah wrote:

we'll be joining you, literally may 5th is my two kids surgeries. Lexi my non affected daughter will be getting a tonsilectomy and my son will be having a velopharengel plasty (lengthening the pallet) he will be in picu and should be similar to a tonsilectomy recovery so we'll be kinda recovering w/ you except double here. They're letting lexi stay over night cause zach will be in picu. I hope yours goes well, its coming soon isnt it ? . I just wish a speedy recovery for all the kids who are getting stuff done.

sarah mom to zach 4 ga2 alexis 6 mr_lucy wrote:

Hi Guys! :)Well we scheduled Abigail's tonsilectomy. We will be going in on May 2nd. My husbands mom is coming to visit while we go through this in case Abigail has to stay in the hospital for a few days. This will help out a lot with our oldest daughter. Mikaela gets really upset when Abigail is away. After the last visit she is more aware of what is happening. The only things bothering me about Abigail right now is that she is having muscle pain in her back, and legs. Sunday she had a fit over the pain. Today she is fine. I just don't know what to think. I get a sick feeling in my stomache. So, once again I will probibly call the dr. for wisdom. Does anyone else have this sort of pain?I have one more question...in regard to family and coping with illness. My husband's step mother who has had nothing to do with our

family since December, and never responds to email called to talk to Abigail on Sunday. They spoke for only a couple minutes, and then that was it. It is really weird...she is front and center when Abigail is in the hospital or when she is having surgery. "Oh I want to be there for you..." Then she vanishes and it is like we don't even exist. I just do not know what to make of this. Not to mention when she is "there for us" she mannages to make us even more upset. Just her being there makes us feel more upset rather than comforted. Does anyone else have people that seem to be atracted to the high drama, and then just aren't there otherwise? How much do you offer extended family? Marc and I seem to manage things better when there aren't half a dozen people at the hospital with us. It is as if we get more strength just from eachother. Am I depriving people if I say that it is better to see them after Abigail is settled, and we

have perspective about her condition? Thx for listening! MystPlease contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

yes it is u forget about the normal children being normal cause our world is not. I am worried that zach has pneumonia constantly and i dont know since he has it now if it will affect them doing the proceedure. I am trying to get that done before his iep for school. Lexi is in perfect health her enlarged tonsils are the only issue unless u consider sassiness and good looks and perfect report cards an issue. . Lexis tonsils are so big they have no space inbetween them and her uvula. Lexi has to stay healthy to take care of us all when we're old and grey and cripple cause i'm heading that way i think i'm affected. I have to see a neuro muscular dr. in july due to some off lab work and symptoms. You would not believe what i had to do to convince people that just cause zachs biopsy for mito came back neg, yet he has the ga2, and it falls under the mito umbrella, that its usually a secondary disease to mito. I seem to know more about it then the dr.s.

Does ur non affected child have a hard time understanding the affected ones situations? lexi does somewhat but understands at the same time. Its hard to explain to the affected one too that thy cant do what their older sibling does even though they did that at that age because of the physical issues and fatigue, etc. Its all very frustrating. Trying to balance normalicey and good health in our childrens lives.

mom to zach 4 ga2 alexis 6 Mysty Brown wrote:

,

I will be thinking of you. I know how hard it is to have two kids down at the same time. It is not easy. I am glad they will keep Lexi too, that will help you. It is better to have them in the same place at the same time.

My oldest daughter is non affected too. Or so we all believe right now. She has odd things that happen to her, but not enough that they will go digging any further. Mikaela almost never gets sick, though she has muscle pain that is frequent. Otherwise, she is in perfect health. Only one maybe two colds a year, and very minor.

It is nice hearing that there is another mom with a non affected child. It seems so rare.

Lets brave this countdown together, I am sure we are both feeling the same things right now.

Hugs

Mistysarah wrote:

we'll be joining you, literally may 5th is my two kids surgeries. Lexi my non affected daughter will be getting a tonsilectomy and my son will be having a velopharengel plasty (lengthening the pallet) he will be in picu and should be similar to a tonsilectomy recovery so we'll be kinda recovering w/ you except double here. They're letting lexi stay over night cause zach will be in picu. I hope yours goes well, its coming soon isnt it ? . I just wish a speedy recovery for all the kids who are getting stuff done.

sarah mom to zach 4 ga2 alexis 6 mr_lucy wrote:

Hi Guys! :)Well we scheduled Abigail's tonsilectomy. We will be going in on May 2nd. My husbands mom is coming to visit while we go through this in case Abigail has to stay in the hospital for a few days. This will help out a lot with our oldest daughter. Mikaela gets really upset when Abigail is away. After the last visit she is more aware of what is happening. The only things bothering me about Abigail right now is that she is having muscle pain in her back, and legs. Sunday she had a fit over the pain. Today she is fine. I just don't know what to think. I get a sick feeling in my stomache. So, once again I will probibly call the dr. for wisdom. Does anyone else have this sort of pain?I have one more question...in regard to family and coping with illness. My husband's step mother who has had nothing to do with our

family since December, and never responds to email called to talk to Abigail on Sunday. They spoke for only a couple minutes, and then that was it. It is really weird...she is front and center when Abigail is in the hospital or when she is having surgery. "Oh I want to be there for you..." Then she vanishes and it is like we don't even exist. I just do not know what to make of this. Not to mention when she is "there for us" she mannages to make us even more upset. Just her being there makes us feel more upset rather than comforted. Does anyone else have people that seem to be atracted to the high drama, and then just aren't there otherwise? How much do you offer extended family? Marc and I seem to manage things better when there aren't half a dozen people at the hospital with us. It is as if we get more strength just from eachother. Am I depriving people if I say that it is better to see them after Abigail is settled, and we

have perspective about her condition? Thx for listening! MystPlease contact mito-owner with any problems or questions.

__________________________________________________