Drake is doing well these past few weeks. We are seeing some strong seizures right now that we are trying to understand. We did lower his Keppra about two weeks ago and he has done fine, but the past 4-5 days the seizures have really kicked up and they frustrate him a good bit. These are the seizures that tighten his whole body and then cause him to jerk very hard until he can come out of them fully. When these happen, it is a full brain seizure and not just a specific area. We have taken his blood to send for a glycine check, but all we can do is guess until we have more information. We are looking into a good bit of new supplements and the excitement of him starting solid food is still very real. I am mixing and pureeing all his foods small enough to fit into his G-tube as we work toward him taking more and more food by mouth. He is just so unpredictable right now which has a beauty of its own…
Specific prayer requests… praise that we were able to lower Drake’s only pharmaceutical seizure medicine….Pray that the seizures calm and his body and brain are protected during them. We are trying to maintain on the current dose until we know the glycine so we can make an educated step forward. His seizures are stronger but his wake spells in between them are brighter…..it is always choosing the lesser of two up hill roads with Drake. Pray for knowledge for Eric and I of how to help Drake’s brain with natural supplements and foods, and also how to know what foods may interact with his glycine and what possible side effects (although not likely there still can be some unknowns) of the supplements. We are trying to do everything we can natural to help him, but being that we have chosen this path, a lot of the “decisions and dosing” fall on us because most of our doctors do not advise on supplements…. the research is just not there to support them.
Drake is seven months old today……… seven months……. it seems hard to believe….. Drake has fought for ever day since the day he was born and he truly teaches our family to live on a different level of appreciation for the hard days….. our family has seen a lot of hard days in seven months…. but we would not wish those days away…because the easier days may not have Drake in them….
We get to dedicate Drake tomorrow on Mother’s Day. We have always throughly enjoyed this time with our other children and with Drake being so critical shortly after birth, Eric and I didn’t know what our future held…. When Drake was on the ventilator in PICU the doctors were telling us there were not many days left…we asked our dear friend and Pastor to come dedicate Drake with us at the hospital because Drake would not likely leave that room alive. Pastor DJ, Laurel, Eric and I all stood around Drake’s little body in his hospital crib, and talked about how life can change so quickly, how beautiful the gates of heaven are going to be, and how we knew God already had Drake in His hands….We knew that dedicating him back to the Lord was simply something we did as an outward obedience for an inward decision to raise our children to love the Lord…. but that Eric and I wanted to make sure we had this sweet memory with our son before God called him home. The four of us laid our hands on Drake and prayed over him and at the end we all spoke of the pure sweetness of how it would feel to be able to do this in God’s house surrounding by our church family one day…. I remember thinking then…..that “one day” would most likely not be possible…..
We are dedicating Drake for a second time tomorrow…..in the house of the Lord ….as early as the doors open….holding our beautiful, seven month old baby boy that was never supposed to live….. we know Drake is still very sick….and his days are very hard…..and his development is very delayed…..but he is ALIVE… and that in itself is a pure miracle…..
If you don't have plans for church tomorrow…we would love for you to come sit with us…..we would love to talk with you about a God that preforms miracles every day….and loves His children fiercely and already knows the number of hairs on your head….. God wants to know you….. He wants to hold you…..and as we celebrate our wonderful mothers tomorrow…..don’t miss the Ultimate Father that created us…..
“Then he took the children in his arms and placed his hands on their heads and blessed them.”
Mark 10:16
“You have taught children and infants to tell of your strength……”
-Psalm 8:2
8 am….AMRBC….4455 Anderson Mill Road…Moore, SC