We are going to visit a Pediatric Neurologist in Charleston today. We had to postpone the last appointment because of our latest treatment “trial” and not wanting to add too many new things to Drake. We are excited for a fresh direction or just the possibility of uncovering something new with Drake’s little brain. Drake’s seizures have calmed in frequency (from 15-20 a day) to now only 6-8 a day….but they are so much meaner than we have ever seen them be…. and to be honest our good days are few and far between right now.
He is growing which is wonderful to see but his constant weight gain really makes it difficult to stay aggressive with his medicines and supplements, which normally results in us reacting to symptoms. The down fall to that is that it takes at least 2 to 3 days to see a change in his body and close to a week to get labs back so that complied just makes for a very poor treatment plan for him….which is hard…. hard on him and all of us. The kids have been doing so well with him. The girls have turned into quiet the little nurses. Asking about his tubes and reminding us of when medicines are due…sometimes they actually get it right! We used to never say the word “seizure” around them because with everyone 7 and under, we didn’t know how much they could understand and Drake’s seizures were so short that we could conceal them so we called them “episodes”. Now, because of how violent they can be and the sense of urgency they require ….as soon as Drake starts the kids start yelling “Drake is having another seizure!!” so Eric or myself can get to him before they start to build up…. Drake’s seizures now make him distort his body extremely hard….and he holds his breath…..for what seems like forever….. then when he does finally breathe he starts to choke so we are constantly clearing his airways…… He has probably 4-5 hard seizures during the day….and at least 2 (last night he had 5) hard ones throughout the night. It truly requires the whole family to be on deck to keep the system functioning.
We are currently in the waiting period from our last trial….the new neurologist that is trying to help us in Chicago is trailing a new option with his rats that he is inducing the glycine symptoms on through diet to see if his “new” combination will work……..we pray it makes some kind of difference…… We are currently looking into trying to balance the chemistry in Drake’s brain and also balance or counter act Drake’s glycine with other amino acids and supplements. It is all very new and our doctors have no research to go on….but still we try to move forward…..grasping for straws is sometimes all you have with a disease so rare……
I have to admit this past month has been hard……we know when you are in life’s storms all you can do is bare down and try not to loose your footing…but some days when Drake is having a hard day….and we are tired…… it is hard. Our church is going through a series right now about suffering and oh has it spoken to my bones. We were driving to the beach yesterday as I listening to it live and the tears are just streaming down my face…..I call those now “water for the soul”…..I used to never cry…I was a daddy’s girl and he hated when we cried ….so I tried to hold it in even when I was hurt….. I have learned now that crying sometimes can be therapeutic…… The substitute pastor spoke about how our trials will be easier to withstand when our view of heaven is bigger than our trials….. It hit me hard because some days if I am honest….my faith walk is so much stronger when Drake is having a “good” day…. when I can see his improvements or I can dive into the “next” treatment plan…or immerse myself in research paper after research paper to find that needle in a haystack….. but when treatment after treatment fails…..and Drake seems to be loosing his footing day by day……my thoughts tend to lean towards questioning God and where He could be in all this…….is there someone that needs Him more than us and thats why His hand can not be seen moving at this moment? When if I am honest…..God has not moved or stopped being God……my perception of God has changed due to my circumstances…. which that is a faith thing….not a God thing…
We sat on the beach yesterday while the kids played and we watched a storm coming in the distance…..one was right next to us but went out to sea and dissipated… but the one behind us….the big, mean one that took up the sky as far as we could see was coming right to us and we would have to go through it to get to our car… We got the kids cleaned up and started towards the car while the boys finished packing up all the “stuff”….. The storm was on us before we made it but what looked so furious and life threatening from the shore …..was still scary, loud, and awfully wet and we would have much rather it had passed over us…..but we were pushing through it because we knew there was shelter to come soon.
I couldn't help but think about our journey with Drake and how I could never have imagined how to “live” through a sick child…when anyone mentioned it I would always say “that is one thing I don’t think I could ever do, give me anything else but my children being sick”….. well I still feel that way…but….now I know with shelter from the Lord you can….. some days you have to choose to keep your trust in the Lord even when it doesn't “feel” good….. we have to choose to hold on to Him when our mind and body is hurting….. we have to choose to repeat those scriptures over and over when our minds want us to be angry and turn from Him…..because when the storm passes and this life has come to an end…..we will see His face and we want more than anything…more than healing…relief….comfort here in this life…..for our heavenly Father to say….”it is over my child and you will never have to question things again….you are home”.
Please pray for Drake and his seizures…..we know that everything comes in “seasons” and we are trying to fight through each one with him as best we can….Please pray for Eric and my stamina….mentally, spiritually, and physically…Please pray we stay unified on Drake’s care and direction as new treatments mean a lot of new research on our behalf….please pray for the children as we are trying to keep “some normal” in our days while caring for Drake and the constant urgency that each seizure brings…. pray for God to be glorified even while we wait for healing….. we are still trusting that in God’s perfect time …He will heal our son….. please pray for patience….. and that our view of heaven isn't blocked by any temporary distress and that we continue to endure and proclaim His name through out our journey….
We love you all…..thank you for always being such a pillar of support.
Romans 8:24-25
For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.