I should have updated about a week ago, but I wanted to wait to hear for sure what the date is going to be for Trinity's surgery. On December 9th Trinity is going to go to Gillette and have her spine untethered. This is about a 2-3hr surgery where they will go in and remove the spine from the skin and he will also do a shunt tap to confirm function of the shunt.
There was an MRI done on Oct. 29th. They looked at her Chiari, spinal cord, and repair region. We talked about Trinity's vomiting of which has not improved. Dr. Partington feels that it is most likely related to the Chiari, and that it generally does not respond to surgery. Basically this is going to be a part of her life and hopefully as she grows she will grow out of it. Our main concern is her weight and that she as been at 16lbs since January of this year. So we are praying that we start to see some weight gain, soon! On the MRI the Chiari decompression area looks good, with visible spinal fluid around the brain stem. They see the tethering at the repair site of which was no surprise. Because of the progressive scoliosis he would like to get her untethered soon.
Trinity will go in on Dec. 9th and the minimum stay is 3.5 days and before she can leave she needs to be able to sit in her chair comfortably. While she is in the hospital she will also see the Orthopedic Surgeon. He will determine where we go from there on her scoliosis.
Trinity has had a cold now for almost a month. It just seems to come and go and we can not get rid of it. Hopefully we can keep her healthy around the time of the surgery. I hate the thought of her being in a hospital this time of year with all the different illnesses going around, but we really don't have much of an option. I know that God is on our side and he will be her protective shield.
One more note for all of you that spend time with Trinity. Sometimes you will see that when a loud noise is made Trinity will either cry or cover her ears and face. This is because of her Chiari. The doctor put it in these words, Trinity basically has a 24/7 hangover. Loud noises hurt her ears and loud sounds are really muffled and make a ringing in her ears. So if you are ever around her please remember how she feels when there are loud noises. I can't imagine how that must feel for her.
We always appreciate your prayers. Trinity is such a beautiful, rare gem! She makes my heart melt and has shown me so much strength. She has a huge heart with a will to do "great" things. When you watch her during therapy you can see the determination that she has and you know that she is going to go really far in and achieve many things.
5 comments:
What a sweet little girl! I can't believe all the things "going on" with her. An adult would likely complain, but she is so sweet and yet determined! I am praying that God posts special angels that cushion her from the pain, that quiet sounds, and place her in a sweet, Spirit-filled bubble!
Much love to you all! I can't imagine the strength it takes to face each day!
Thanks for the update! We will continue to keep you guys in our prayers. I love to read this and get updates. Sounds like you have a pretty amazing girl at your house....I mean, 2 amazing girls at your house!
Katie Werner
Thanks for the update sweetie!!! Big hugs and prayers for health and comfort for Trinity and peace for her wonderful parents and big sister!
Love,
Sarah and family
PS Please tell Aubree that Stella is sending her smiles too! :)
i have a cousin who is 48 with the same but worse defect. your little girl is lovely. i can see you are so proud of her.and she is proud of you.
I am so glad you wrote this about her Chiari and the loud noises. I have asked a few doctors about this and have not received an answer but that makes perfect sense. I have talked to several other SB moms with the same 'issue' with sensitivity to loud noises. It is nice to confirm that there is a reason for it. We will be praying for you all on the 9th. Hang in there.
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