Update on Leo: Today we spent a good part of the morning with the occupational therapist at DHMC, plucking at hi-tech styrofoam pads. The biggest issue in Leo's care is purely positional. Because of the weight of his head, unless his neck is in a completely neutral position, he has problems breathing as his airways get restricted. We were trying to come up with some props and pads to try to make it easier for us to position him, and so that he will be more comfortable. He can't stand the pressure on the back of his head, and is only comfortable when his head is turned to the side. What we came up with is basically a little foam mattress with a dent in it for his head. After we put him in it, he slept for a full four stretch. I guess that means he likes it!
In the afternoon we had another meeting with his doctor in the sunny courtyard outside the NICU. His doctor, George Little, is an amazing person. Very knowledgeable and compassionate. We couldn't have asked for a better one. Anyway, during this meeting we decided to go ahead with the shunt. The surgery for this will take place on this coming Monday. While he is sedated, they will also take blood for the genetic lab work. I pray that they won't find a genetic disorder as the cause of Leo's hydrocephalus. It felt strange to get all these things going, as if for the first time in this whole ordeal we are doing something quite active for Leo's care. From the beginning, this has all been a wait and see thing. It still is, but now it depends on how Leo is going to react to the shunt. Please keep him and us in your prayers.
On another note, Nika has fallen in love with her little brother and brought him some of her drawings of "our family." After looking at her portrayal of herself, baby brother, mama and papa, I realized that Leo probably doesn't look at all strange to her. On the paper she had drawn four big circles with eyes and smiles and with lines representing feet and arms sprouting from the sides of the circles. She sees us all as huge walking faces. She didn't want to leave his crib-side this afternoon, and kept asking for "lots more minutes," to stay with him. And don't we all feel the same way.
In the afternoon we had another meeting with his doctor in the sunny courtyard outside the NICU. His doctor, George Little, is an amazing person. Very knowledgeable and compassionate. We couldn't have asked for a better one. Anyway, during this meeting we decided to go ahead with the shunt. The surgery for this will take place on this coming Monday. While he is sedated, they will also take blood for the genetic lab work. I pray that they won't find a genetic disorder as the cause of Leo's hydrocephalus. It felt strange to get all these things going, as if for the first time in this whole ordeal we are doing something quite active for Leo's care. From the beginning, this has all been a wait and see thing. It still is, but now it depends on how Leo is going to react to the shunt. Please keep him and us in your prayers.
On another note, Nika has fallen in love with her little brother and brought him some of her drawings of "our family." After looking at her portrayal of herself, baby brother, mama and papa, I realized that Leo probably doesn't look at all strange to her. On the paper she had drawn four big circles with eyes and smiles and with lines representing feet and arms sprouting from the sides of the circles. She sees us all as huge walking faces. She didn't want to leave his crib-side this afternoon, and kept asking for "lots more minutes," to stay with him. And don't we all feel the same way.
May the Lord God bless every doctor and every nurse who will perform the surgery, and let His will be done!
ReplyDeleteYour family's collective capacity to love brings tears to my eyes. Leo is so blessed to have been born to you as his parents and Nika as his sister.
ReplyDeleteHey angels,
ReplyDeleteYou have been in my heart. When I like at Leo (which happens all day) I see the heart of a saint. I love him, and I pray for him. You are all protecting him, but I also feel he is protecting us, serving us with his compassion, the heart lion of Jesus.
I am creating a documentary healing tv show about the worlds greatest healers. For the pilot we used an american healer in woodstock, ny, named John Carroll. He is often able to heal patients in severe conditions, often over the phone. His technique is faith, as he just recites prayers to Jesus and Mary when healing. His work has been so profound that physicians in hospitals in ny call upon him regularly to heal patients who are on life support over the phone You can check him out at www.johncarrollhealer.com, or google john carroll, intuitive healer. Just an idea to give him as much comfort as possible.
Its hard to imagine what you are going through, but this blog helps us to that end. Much love to you all.
Love, frank Vogt
Lord, Please Bless the hands of the surgeons, nurses, and all involved with Leo's surgery. Please also send down your Guardian Angels to hold up and support all who will wait for this surgery to be completed. Theotokos, please intercede and pray for Leo, Anna, Justin, Nika and all of their family members. Amen
ReplyDeleteI am amazed at the strength and courage of your beautiful family. I cannot imagine the heartache and can only share my imperfect love and prayers. And perhaps some encouragement. A wonderful book I read about grieving used the term, parentheses. These are set-aside periods of life. The beginning parenthesis is obvious. The ending, not so. I’ve come to realize that these are periods of either intense sadness or intense joy. Regardless of which, they require effort—conscientious cooperative with God’s will. They come regularly, like Great Lent, Holy Week & Pascha! They also come unexpectedly. Like with Moses, the desert periods are filled with the silence and sadness you describe Justin. This is when our hearts become ready to listen—to hear Christ Jesus and learn to see Him “in all and for all.”
ReplyDeleteIf I may, I’ll share another area close to my heart, teaching. I have taught many children. The lessons they have learned, I cannot say. However, I’ve been blessed with twenty years of learning many lessons taught by all of my students from one end of the average and exceptional developmental continuum to the other. The biggest and most enduring lessons I have learned were from the “wise sages” on the exceptional continuum.
Perhaps the “parentheses” periods of life are a misnomer. In our frail human condition, the typical periods of life may be distracting us from more essential periods of effort and relationship.
Take care of your family, your little icon of the church. Be of good courage. Say no when you need quiet family space and yes when you need time individually, as couples, with friends…
“Nevertheless, I am continually with you.” Psalm 73:23
Debbie Krajcik