Tuesday, April 24, 2012

Percolate

"Let the beloved of the Lord REST SECURE in him, for he shields him all day long, and the one the Lord loves RESTS between his shoulders."   Deuteronomy 33:12


What a picture of God's shepherd heart for us, as a young lamb rests on the shoulders of a shepherd, so are we to rest, knowing that the Shepherd of our soul will carry us when we are in need of help and comfort. I've been meditating on this verse. In some ways, life has slowed for Adonis and I considerably since we learned about our son's condition. I can only think of a coffee percolator to describe it, only it seems like we only get one drip a day to fill our pot... feels like we are waiting. Waiting to see what happens, waiting for God to speak to us, to speak to our storm, to give us a drip of comfort each day and a drip of strength to complete another day. Resting sounds so much better to me than waiting, doesn't it? That's why I've been so consumed with this verse about resting secure in Him. That's the prayer of my heart, that we can rest secure in Him, knowing that we are his BELOVED, even while this coffee pot of life is brewing.  


On April 17th,  we upped Edmond's dose from 2.8ml to 3.75ml of Keppra. It's already been a week and he has continued to have 2-3 very short tonic seizures per day, lasting less than a minute. The good news is they have not worsened in duration or intensity. Also his spasms have significantly lessened. There are days where I haven't seen any, which has been a real blessing. He also stopped having a series of spasms during an episode, now it seems he will only have one brief spasm flexing movement and then be okay for another couple of hours at a time. We are hoping these continue to disappear. Edmond was also referred to vision services through an organization called Blind Babies who are coming to assess his vision skills tomorrow and will be seeing Edmond 2-3 times monthly for vision therapy for Edmond. At his last 9 month old appointment with his opthamologist, the doctor stated that she would not consider Edmond to be completely blind, but that he does have limited vision, only we don't know how limited it is. Edmond's eyes and brain are still developing so early intervention services will be helpful for Edmond. We believe Edmond does see us and we see him track momentarily. He is also fascinated with lights and it is obvious that he looks at lights. 

Adonis is organizing a poker tournament fundraiser for Saturday June 2nd. Please contact us if you would like to be a part of this event. You can call or text Adonis at 650-303-5862 or email asegrove@comcast.net.  We also have a paypal link on our blog if you would like to give a donation for Edmond or email us and we can provide you with our mailing address if you would like to send a check. We will definitely post about specific needs for Edmond as they arise. 


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.