Sorry for the lack of update. I think about you all keeping up just from these updates and hope you don’t worry too much when we don’t post. Unfortunately, there’s cause to worry these past couple of days.
We brought Lydia home from the hospital Wednesday with plans to put her on the max dosages of her meds within a couple days. On Thursday, she had several seizures that made her airway close up and she stopped breathing. After many hours with these seizures, we started to think that Lydia wouldn’t make it through the night. As usual, our little girl surprised us. She breathed fine through the whole night and has continued to during the day today.
We’ve upped her medication levels to as high as they will go. We’ve seen some seizure activity and her breathing is becoming more and more labored.
We were thinking of bringing her to Branford Hospice Center but decided we would keep her home instead. We have been very well taken care of by visiting hospice nurses and friends who are nurses.
We don’t expect her time will be long, but she’s surprised us before. We’ve been so blessed to have these days at home, even the scary ones and we will joyfully take every moment we have with her.
We feel the presence of our God all around us, giving us peace as we await His perfect time.
Please don’t stop praying for our sweet girl.
On a happier note, we took a walk today! Our friend Sarah, her daughter Evangeline (who is Lydia’s BFF), Micah, Lydia and I went for a quick walk in the park. It was nice to do something that felt so normal. Pictures are coming!
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Jen
ReplyDeleteWe have been worrying. Thanks for posting - I was about to call Amber. We love you and we will continue to pray. As always, let us know if there is anything that you need.
I have been praying and will continue to do so. Love on that baby!
ReplyDeletePraying for baby Lydia
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you are all in my thoughts.
ReplyDeleteYou are always in our prayers and thoughts. You both are tremendous parents. A parent is not defined by your genetic makeup, but by your love and care. You both has done a wonderful job being parents, being loving, kind, caring and enduring. Keep up the good work. We too check daily and were very worried, but know God directs our steps. He is in control and we pray for Lydia's peaceful passage and comfort to you. Any time left that you have with her will be so special and cherished. God bless her in all the time she has left. We love you very much -- Aunt Michele, Uncle John & Jay Sullivan
ReplyDeleteMy prayers are with you and your family. Your strength is a testament to her strength.
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