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Children with disabilities / chronically ill children



Question:

Hello 2017 moms!

I am Anna, 33, happily married and mother of three charming children.
Our son, 8 years old, is severely handicapped by a rare genetic defect and relies on help 24/7. The genetic defect was scientifically described for the first time in 2015 and since this February we know that Felix has inherited it.
Our middle daughter, 3 years, is very healthy and is a sunshine!

Then came our youngest daughter, 1 year, and everything went fine. She was / is a writing baby. She developed well for the time being. She was always a bit late, but in the frame.
When she was four months old, I came to first suspicions regarding development, behavior, etc. Soon after, a hearing loss was diagnosed and with that it started. She could only turn 8 months on the stomach. She still does not lean on her arms, she can not sit without help, she can not crawl, seal, walk or stand.

She can grasp and reasonably play games, she also acts attentively and consciously and reacts very well to her environment when she is not screaming ...

Since Monday we have the sad certainty that she has inherited the genetic defect. The effects are yet to be estimated in any way and are already different from those of her brother.

Living with two children with disabilities becomes a big job and we are afraid of it! It feels awful, it hurts and the grief over it is overwhelming.

Nevertheless, we will find our way and let the happiness outweigh the family!

Are there any parents with sick or disabled children who want to exchange information? I can not always answer right away, have something to do ;-)
But often it's just nice not to be alone.

I look forward to meeting you and your treasures.

Greetings Anna

Reply:

  • reply - 1: I do not have a disabled child, but I did not want to just click away like that. Feel yourself, if you want that. You are definitely great! 
  • reply - 2: There you have to carry a heavy package. I hope we can support you here!

  • reply - 3: I also wanted to leave a "feel pressed" here.
    You will do it as a family, even though your journey will be stony and difficult, try to make the best out of it and, as you already wrote, let the luck outweigh the family!


  • reply - 4: We do not have a handicapped child in this sense, but our son is clearly delayed due to a neurological disorder. We do not know if he is developing "normally" (catching up with everything) or "getting out" at some point and stopping at the level he has reached (theoretically this can happen at any time). So at least we still have a chance of having a healthy child and can also influence with a lot of therapy. Nevertheless, I still remember very well the feeling when the world seems to stand still for a moment and a floor is pulled underfoot - you get the diagnosis.This must first sink, but then awakens the fighting spirit (was at least so with us) - and an even deeper love for the special child. Feel yourself - you are great parents and you can do it !!

    When can one foresee the effects on the mouse?


  • reply - 5: I'm really sorry what you have to endure with your two mice.
    I can only partially imagine how much strength you have to spend every day for the children, especially since even the 3-year-old is here who also wants to be employed.
    As you write you love your children in spite of everything idolatrous and I like that so much. It is not self-evident because many doubt their strengths and can not cope with them.
    I have a huge respect for how you master this, you really have to be very strong parents.
    We also have a sick child, but unlike you, it's nothing.
    Tim was born with a serious heart defect (aortic arch interruption), he had a hole in the ventricle and the left heart valve was too small.
    When he was a week old, he had his first big op in life and death. None of the doctors could tell us in advance how big the chances are that our little man will make it.
    After the Op, it did not look very good at first, he was intubated for a long time because he did not want to breathe independently or could not.
    I had a pastor at my side all the time.
    After a week it got better and better and he could be relocated soon.
    That was last year in September. In January he had the 2nd big Op and he is really fine.
    We have to go regularly to the cardiologist for control and it will also be the one or the other Op necessary, but we love him the way he is because that's how he is right and so it has been given to us.
  • reply - 6: Hello Anna. First of all, I want to say that I have tremendous respect for you and only wish you the best. We got our Lucy in Septemebr 2017. During childbirth, she had a severe lack of oxygen and a few hours later had a seizure. As a result, she has lost many of her brain cells.
    The first diagnosis of the doctors was very bad, as she also showed little to no reflexes. We were told that she will probably have a strong mental and / or physical disability.
    It is now ten months and has developed very well so far.
    Motorically, she is pretty far back, but we just hope that she continues to develop so well and in the best case she has only a slight learning disability.
    Although I have only one child with a disability that you can not yet define exactly, I can sympathize with your fear and grief very well. I'm pretty scared of what the future holds for Lucy, and I always try to think about it and enjoy what she can do now.

    Lg Caro

  • reply - 7: Hello Anna!

    Feel yourself pressed by me. I wish you much power!

    The job-related curiosity makes me wonder if you like to tell what gene defect you are dealing with?

  • reply - 8: Also I would like to express my fullest respect to you and all other Mamis!
    It's amazing what you do and what strength you need! Are you depressed!

    We have already learned during pregnancy that our little one will have a foot deformity on the world, both sides. Called club feet.
    At first it was a shock. I / we have been informed on the Internet how the whole is well, is treated, etc.
    Then he came on 30.8. at 35 + 2 all of a sudden and quickly to the world.
    The feet, yes looked different, but not as bad as expected.

    6 days after birth, we then presented to the orthopedist, on day 8 after birth, he got his first plasters. These turn up thighs high around the feet in the form. Up to the Op, there were 7 plasters and 2x a plaster splint, which we were also allowed to lose weight (for bathing, Phsyio). After 12 weeks, a tenotomy was performed, in which the archival tendon was severed, as this is too short for the children. Then again 3.5 weeks plaster and since then we have a rail.
    This we had to wear at the beginning of the day 23 hours / day, since April only to sleep.

    There were motor delays due to the splint, M also often had blockages in the pelvis which were released.
    But I think he has currently caught up so far.
    When he stands, his feet are a bit like Charly Chaplin. Whether it stays that way, you will see.
    Just as the journey continues.
    The next date we have only when he can walk free.
    Then you can see if he possibly needs inserts, special shoes, orthoses or anything else.
    Currently we have 1x the week Physio, in which the feet are stretched, the posture, etc., and we just hope that we will never have a recurrence and he can walk without problems.

  • reply - 9: First of all, I would like to express my full and greatest respect to you and all the mums.

    Raphael, like my big one, has a VSD and an ASD both of which are not yet closed (at my big age they were 6 months too) and he had a systemic collateral pulmonary artery but closed and formed back my big one still a growth-related aortic stenosis. What will be foreseeable in both first who they are grown is whether they have inherited my heart type (until 5 years ago he was still declared as a heart defect) say they have a Sinustachikardy and a through an enlarged and heart muscle there are large parts of the heart muscle cells to unload arbitrarily. You can live very well with them, they just have to start taking beta-blockers as young adults and have a higher risk of having a heart attack. You can tell both of their heart defects only to whom they romp too much and in the current heat.

  • reply - 10: Hello Tezzi,

    The genetic defect was named SPATA5 EHLMRS (Epilepsy, Hearing Loss, Mental Redardation Syndrome), these are the main features of the genetic defect. In addition, there is often a global development disorder, etc.

    Best regards Anna

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