How do you deal with the "almost there?"

A place for those bereaved to receive and offer support
for faith
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Re : How do you deal with the "almost there?"

Postby for faith » Mon Dec 31, 638317 1:19 am

Thinking of you and Hannah, I am so, so sorry, what a beautiful little girl. My daughter lived for a month in the NICU with a preemie disease and after many treatments and surgeries passed away. My older son was 4 at the time and it was very hard visiting the NICU and trying to be with him also. My parents were incredible help, especially with the middle of the night emergencies. Sorry, not much help here, but know we are thinking of you.

Sending many positive thoughts to you and your family. Hugs.

sdeut
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Re : How do you deal with the "almost there?"

Postby sdeut » Sat Dec 29, 638317 8:57 pm

I am so sorry ((hugs)). I do not have any other children but I lost my son this summer to spinal muscular atrophy. He lived for 2 months and they had no clue what his diagnosis was. We pretty much put everything on hold to be with him. He saw a neurologist, cartiologist, endocronologist, gentics doctor and so many others I lost count. Zachary had MRIs, Xrays, blood tests, and a biopsy also. The doctors kept telling us it is this and then they would be wrong. I cried a lot as I am sure you are doing but I tried not to cry around Zachary. I pretty much lived in the NICU. There is no right or wrong thing to do right now. All I can say is let friends and family members help you. Find someone to talk to (The NICU had a therapist that would visit me during times the NICU was closed). Again I am so sorry.

hope08
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Re : How do you deal with the "almost there?"

Postby hope08 » Sat Dec 08, 638317 5:45 am

I have no advice just prayers for you and your daughter.

brianned5
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Re : How do you deal with the "almost there?"

Postby brianned5 » Fri Dec 07, 638317 10:03 pm

I'm thinking of you and your little girl.

suleaf
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Re : How do you deal with the "almost there?"

Postby suleaf » Fri Aug 27, 638315 2:32 am

HUGS to you... and love.

I don't have any children- yet- but it's stories like yours that always touch me... you are showing incredible amounts of strength and love...

I will pray for you and your little girl.

jsu_work
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Re : How do you deal with the "almost there?"

Postby jsu_work » Mon Aug 02, 638315 4:42 am

big hugs.. and all the warmth in my heart is sent out to you.

Guest
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Re : How do you deal with the "almost there?"

Postby Guest » Fri Jul 23, 638315 8:18 pm

Hi there,

Big hugs to you. Fortunately, Megan does not have a serious illness so I don't even know how I would react if she did. However, I am hoping for the best for you and your family.

Peace be with you.

lisainnj
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Re : How do you deal with the "almost there?"

Postby lisainnj » Fri Jul 23, 638315 5:53 pm

None of my children have ever had a life-threatening illness, so nothing to offer but (((hugs))) and prayers.

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jamie w
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Re : How do you deal with the "almost there?"

Postby jamie w » Fri Jul 23, 638315 4:40 pm

I am so sorry for all that you are going through. Although I now am pretty confident that my child only has cerebral palsy, it hasn't always been that way. We have seen GI, genetics, endocrine, neurology, EI, and I cannot even remember who else. I can rmmemeber the days of just wanting to know what exactly the diagnosis was because at least then I could begin to come up with a plan and make sense of what was going on. Many many months down the road things are better. How did I deal with the day-to-day? I just prayed a lot and made myself get up and go no matter how bad I just wanted to surrender to it all. I knew I had to keep fighting for answers because my little one was not big enough to fight for herself. We were told at one point she might have Angelman Syndrome which would have been devastating. Then we were told she had a metabolic disorder. Then we were told she has a cyst in her brain. Then we were told she might be having seizures. After countless negative tests and a persistent and at times *****y mother, we have come to find out Anna has cerebral palsy and milk/soy allergy which has caused her all of her troubles. She was put on Elecare and after getting the much needed nutrition she was not getting she started doing much better. I know as a mother you have to be realistic, I get that. But also, doctors are wrong sometimes and you have to just keep going and persuing until you get the right answer. My heart goes out to you and if I can be of any comfort or support please don't hesitate to contact me. I encourage you to read my blog- you can see how in the beginning it was complete devastation and now it is just life as we know it with Anna. Maybe it will be encouraging. (((HUGS)))

jeansmommy
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How do you deal with the "almost there?"

Postby jeansmommy » Fri Jul 23, 638315 12:35 am

For those that don't remember me, I was put on bedrest at 29 weeks because of severe PIH. They finally delivered Hannah at 36w1d because, even on tons of methyldopa, my BP finally got to be too high.

Long-story short, here we are 4 months later. Hannah is sick, very sick. We have done so much testing already...blood, skeletal surveys, ultrasounds, and just recently a skin biopsy. The lead diagnosis is a metabolic disorder called Niemann Pick type C or Gaucher's disease (which is unlikely based on tests already done).

NPC is also known as Childhood Alzheimers, and it is a quickly deteriorating and debilitating disease with a very short life span. It is killing me knowing that I may lose my daughter within a few months to a few years if this diagnosis turns out to be true.

For those that have had children with serious illnesses, how did you deal with the day-to-day? Especially if you have other children? I am just lost as to what to do.

You can read more about Hannah's story at http://littlemisshannah.wordpress.com


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