Friday, September 12, 2008

Magdalena and Her T18

Sometimes it is hard for me to remember that our sweet Magdalena is sick. She looks so normal and beautiful. Edward's Syndrome is different for each case, and only if looking for it can you see it. Oh, we always tease her about pointing at us. When she does it we talk at her saying "are you giving me the finger?". In reality that is a small, insignificant sign of the syndrome. I won't go into all of them because those special unique qualities are not noticeable unless looked for. Well, I don't want her to be searched over, even if it is not intended, but I want her precious face and personality to be enjoyed.


Although many problems have not shown themselves yet, Magdalena's main battle is her heart. We have an appointment with a cardiologist on September 22, and I am praying that we will have a better understanding of the problem and what we should expect in the future. Here is a picture of Magdalena wearing her apnea monitor. (Look at her legs! They are so little!) The buzzer goes off when her heart rate is too low or too high or if she has stopped breathing. Like I have said in previous posts there do come times when we just want to enjoy her while we can, and we will take it off in situations in which she will be held by someone who can see if a problem occurs by looking at Magdalena's appearance.

12 comments:

  1. She is such a doll! Her legs are so long! I am so glad she is doing good. Love the way you pronounce her name, I never would have known that if you didn't clarify.

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  2. Looks like she is in the position and waiting (patiently) for you to rub her legs!

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  3. I have seen her so many tiimes but never realized how long her legs were..... I really think she has grown in a week!

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  4. Has Magdalena had apnea episodes or if they gave you any instruction if the monitor goes off for the heart rate? Other than to reset it, what it may indicate as far as her heart condition? I will pray for her upcoming appointment.

    We have a similar set up but switched to using the skin electrodes as the belt was too loose for Alyssa. We go to the cardiologist on Monday and hope to have a better understanding of her heart.

    It's good to know Magdelena is doing so well, it is a real encouragement for us too.

    Your family is in our prayers.
    Trish
    www.caringbridge.org/visit/alyssagraceshihadeh

    www.wndrfllymde@blogspot.com

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  5. She a beautiful! She looks like she has grown so much since she was born. Keeping you in prayer for a wonderful appointment at the cardiologist. Praise God for apnea monitors!

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  6. I pray for your family whenever I think of you!

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  7. Looks like she is going to have long beautiful legs. Continue to pray.

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  8. So sweet and precious. I'm assuming that is a preemie pamper. I can't even imagine how tiny she is. Good luck and prayers for a great visit to the cardiologist.

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  9. Oh my, Magdalena.
    I would so LOVE to hold you in my arms and share all this LIVE I feel for you!
    You seem to perfect.
    Maybe thats just because you ARE perfect.
    Alison

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  10. Precious Magdalena! You are a beauty! Love your long legs. Praying for you and your family and knowing that you all are enjoying each exciting moment.
    God bless you all,
    Kathy

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  11. Precious Magdalena! You are a beauty! Love your long legs. Praying for you and your family and knowing that you all are enjoying each exciting moment.
    God bless you all,
    Kathy

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  12. She is precious! I remember so well the days of the apnea monitor for our tiny preemie. It becomes like a second child to tote around. :)

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