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Harper is doing well but....

I try to keep everything very positive about Harper as I write to all of you.  Here's a picture of her and daddy during their pre sleeptime snuggle and prayers.  Your prayers are felt as she makes little strides.    She has been doing great!  She is very smiley.  She is laughing.  She has had some great response in visual therapy to colorful objects and shiny objects.  However, she has had two "brief" grand mal seizures in the last two weeks.  She is also experiencing some "little events".  She had a regular visit with Dr. Rubenstein, her seizure specialist,  this past week.  He is concerned because the first seizure wasn't "triggered" by anything like sickness, fever, dehydration.  She had the second seizure this morning.  She will have tests done tomorrow and he will review the EEG from her sleep study.  Pray that it is just a medication adjustment and nothing more.  Other good news is that as a result of the sleep study she is now going to one night on and one night off the vent. This will continue for 3 months with a goal of being totally off the vent at night.   Her first night was Friday night and she did great!  She slept super and no alarms!  Only seven weeks to go until little sister Teagan arrives.  It looks like Mommy will deliver Teagan by c-section so please keep Tara in your prayers too.   Billy had a good week at KIPP Summitt and will go back to school with children in class this week.  Mike and I head north next Sunday.   So its been a week of highs and lows and hope and worry. Its been a week of looking forward for me and looking back too.   This weekend at Mass I heard some of my favorite readings.  Isaiah 55, All who are thirsty Come to the water.  Pauls letter to the Romans 8:35 Nothing can separate us from the love of God and finally Matthews Gospel of the Loaves and the Fishes.  All the readings speak to us of Gods great love and care for us.  Of course as most of your know, everything is a song to me, so I have included one of my favs from the St. Louis Jesuits.  I sang Take Lord Receive this morning as a communion meditation.  It was mostly prompted by Fr. Russell's homily last night.  I shared with him that I'll be singing it all week contemplating the words "give me only your love and your grace that's enough for me".  Tonight I am gratefull for all of you who have been that love and grace for all of us these past 17 months.

https://www.youtube.com/watch?v=UrX_T5QLBXQ


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Comments

4 Comments

Jeannea Adams
By
Unfortunately, this disease is not predictable. They'll adjust the meds. She's making great progress.
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Jane Bowley
By Jane Bowley
I am so happy to hear that Harper has been doing so well. I will be praying that there is an easy solution to her returning seizures. Prayers sent for Tara and Teagan, too.
Love and prayers for all of you.
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Carolyn Katchmar
By Carolyn Katchmar
I am so glad to hear that Harper is making some improvements! We will pray that through the tests they will have some info as to why the seizures have come back and what they can do for it.
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joanne shimko
By Joanne
Your family is always in my daily prayers and will continue to be. Let's hope the doctor can determine what is causing the seizures. Special prayers for Tara, Bill and baby, that all will be well. You and Mike are amazing, like rocks through all of this. God bless you all.
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