Sunday, April 15, 2012

Edmond D.

 Adonis and I just returned from a weekend getaway for our 3rd wedding anniversary. We are happy to report that Edmond spent his first weekend away from us without any disaster. He stayed with his Lola Vernie and Eden stayed with Grandma Liz. Eden calls Edmond "Eh-mun Dee", so we all have kind of affectionately adopted calling him Edmond D. as well. Edmond D. is now 9 months old and a week. His spasms have reduced to about 1-2 a day, but he has been having a regular occurrence of what I believe looks like a type of seizure, a tonic seizure where his body gets stiff and still and lately his eyes are blinking along with it... this has been going on for about a week and I will be talking to his neurologist about upping his seizure medication before they get worse, will probably have a new dosage settled by the end of this week. 


Edmond is on a new feeding schedule. He now eats baby food for breakfast, lunch, and dinner with an accompanying bottle to follow. He is feeding very well. There is a major concern that he wouldn't be able to figure out swallowing, but he seems to have it down. I really believe this is a miracle. The developmental specialist who sees Edmond once a week said that she was especially impressed that he is able to eat because kids with less severe diagnosis' than Edmond's are not able to do so and have to have feeding tubes etc...  Edmond has been very vocal the last month or so and is cooing and making noises to us daily. He responds when talked to and continues to have such a sweet and adorable demeanor. Edmond has been battling a couple of colds this month beginning with a stint of bronchialitis, but they have all cleared up now and his pediatrician says his lungs continue to be strong. Eden will be starting a 10 week swimming class and I'm hoping to figure out a way to soon get Edmond in the water too. Adonis is planning a fundraiser "poker tournament" to help us raise money for special equipment and classes we will need to put Edmond into as he grows... and he is growing fast. This event date and time is still to be announced, let us know if you would like to be a part of it.  Please also remember us in prayer for continued strength and clarity of mind as we make decisions for our family and our son. Some of you may know we now live in a second floor apartment without an elevator, so we are concerned about how long we will be be able to carry Edmond up and down the stairs. At some point we may need to consider a different living space or trade with a tenant on the bottom floor. We continue to pray for Edmond to be able to see clearly, sit up, crawl, walk, play and live a full life. We do not lose hope and we continue to trust in our Lord Jesus who gave his life for us and rose from the dead to give us hope of new life, He is the hope we cling to every minute, hour and every day. Thank you for your continued love and prayers. I often think of the lame man whose friends carried him to Jesus and lowered him into his presence from the rooftop. I often picture my family in a cot being carried to Jesus by all of you and your prayers for us. Thank you for that. Thank you for all who have called and thought of us and cried with us. We love you. 


1 comment:

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