Sophie is nearing her seven month birthday, and she has begun to lose more strength over the last few weeks (which is often seen with babies with SMA in the 6-7 month timeframe). Not only is Sophie's strength declining, but also her ability to efficiently eat (suck/swallow).
On Friday, October 7th, we decided to have a nasal gastric ("NG") tube put in for Sophie. An NG tube is basically a small plastic tube which leads from the nose to the stomach, which allows us to give Sophie food directly into her stomach. The few weeks prior to the NG tube placement, eating had become more and more difficult for Sophie and she was getting less and less food. This led her to often being uncomfortable and irritable. After the tube was placed, we were able to administer food through the tube without her using all of her energy to eat. After the first feed with the NG tube that afternoon, she was immediately much more comfortable and back to her normal happy, smiley ways!
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| Sophie sporting her new NG tube |
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| Her NG tube doesn't seem to bother her as evident by her smiles |
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| Playing on the iPad...though Sophie has only a little movement in her arms, she is able to use it on the touchscreen of the iPad...here she is playing a piano iPad app |
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| Kind of tough to see, but this is Sophie asleep while being fed through her NG tube...Liz is holding her food in a tube, which goes through the tube into Sophie's stomach...Sophie still gets her cuddle time while getting her feeding! |
With the beautiful weather this week, we decided to take Sophie to the beach
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| Sophie, Bella, and Daddy |
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| Sophie and Mommy |
Once again, we'd like to thank everyone for their kind thoughts and support. Our friends, families, employers, colleagues, and Sophie's healthcare providers have all been so supportive and understanding. We'd also like to mention a special thank you to everyone in the SMA community... you have been an incredibly helpful and supportive group in every step in our journey (as only you would understand), and we hope we can give back to others in the future like you have all helped us so far (and we're sure that help will continue in ways we can't yet imagine in the future).
Dear Mike and Liz,
ReplyDeleteWhat a beautiful tribute to a beautiful little girl. You are all in my prayers and I truly admire your love and strength.
Beth Szuba
I am a neighbor of Carol and Terry Dugan, Craig's parents. Carol shared with me about Sophie some time ago. You have been in my prayers ever since. Your blog which I just viewed in its entirety has touched my heart. You made each day with Sophie such a precious event. It reminds me of something I heard long ago and has stuck with me. Our children belong to God and are on loan to us as their earthly parents. Although your time was short, Sophie obviously touched and changed your lives. Our daughter was 34 when she was killed in the Chicago Lane Bryant Murders. We had her with us much longer than your Sophie, but the loss, no matter the timing, is deep and draining. We mourned, but were blessed with 3 grandchildren Jeni left behind for all of us to love. (a part of herself) God walked with us through all of our difficult time, and in time, we were slowly able to feel joy again. Jeni is with us every day, just in a different way. The counselor called it a "new normal." Have hope. I will see Jeni again, and you will be reunited with Sophie when it is time. May God hold all of you gently in his arms during this difficult time. Pam
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