Hi friends! I apologize for not posting an update for a while but honestly things have been pretty mellow around here and that is truly a blessing! Fenn had a round of follow up appointments with Neuro and Rehab and he was also seen by ENT at the first of April. We absolutely love seeing Fenns Rehab Doc. He is amazing and always has the most helpful insight and he truly cares about Fenns health full circle, not just the part he participates in. This appointment went well. Fenns current set of SMO braces are fitting well and we won't need new ones probably until his next growth spurt. We did a new set of Xrays of Fenns hips and spine. His hips are monitored yearly. They are stable for now. Fenn does have mild scoliosis but for now does not require any bracing of medical intervention. His neuro appointment went great as well. Doc agreed on a dose increase of his nighttime med that we use to keep his falling spells at bay. In March Fenns spells returned with a vengeance after several months of seeing very few. On his worst day he had a total of 8 in a 24 hour period. After a round of steroids they returned to 1-2 a day. This didn't sit well with me. We decided on a trial increase of his nighttime med and we saw improvement the next day so by the time he saw neuro on April 9th Fenn had been spell free for almost 2 weeks. Fenn has been experiencing headaches so we wanted to get that on record with neuro and hopefully the med increase will help with those as well. We will follow up with both neuro and rehab in 6 months as long as Fenn remains stable. We also had a great appointment with ENT. Fenn will be getting tubes placed on May 20th. The hope is if fluid build up is the cause of his spells this will alleviate that. If not it will be back to the drawing board on causes for his spells.  Overall we are happy with where Fenn is for now. We continue to pray he remains stable and that we can keep his symptoms and other diagnoses under control with his meds and therapies. 

Fenn is really enjoying the warmer days we have been having. He LOVES to be outside. He likes going to Mamaw and Pas house to drive his forklift around the yard. Most of Mamaws garden lights are still standing lol. Bubbles are also a favorite past time along with sidewalk chalk. I know he will be excited when it is finally warm enough to frequent our community splash pad and of course the pool.  There are so many times I catch myself just staring at him, taking in every little movement, every side eye glance and ornery smile. Literally trying to soak in every breath he takes. We have had some tough things asked of us recently and they have only made us more appreciative of every minute we get. Trying to keep our minds from going to dark and scary places is a constant struggle, especially on Fenns bad days. Sometimes I feel stuck and lost in this season of suffering we are still navigating. I find it hard sometimes to not feel as if I am being punished for something and that it's reverberating through my son. I know this isn't true. God uses all of our suffering for His good. I know this anxiety I get isn't punishment. It's just the storm raging around me and I want God to still it. I know He is strengthening me in areas I can not even see yet, everything that happens serves His purpose but I still want Him to reach out and silence it all. Fenn loves the bible story of Daniel in the lions den. It occurred to me after reading it for probably the 100th time that Daniel never prayed for the lions to go away. I have been praying for healing and essentially for God to take all of this away for Fenn. I think I have been trying to pray myself and Fenn out of this situation. I instead need to be praying for God to give me courage like Daniel to face this head on and to truly trust that God has this and God has Fenn. God never brings us to something he can't take us through and He uses our suffering to refine us. It's an open invitation to trust Him. I know I am lacking and incapable of having any power over this so instead of asking God to take it away, I need to ask God to please teach me something in the midst of this suffering. I need the constant reminder that God can do so much more with my surrender than I will ever be able to do with "my control." I need to declare His victory over every obstacle, every fear, every doubt! I found 2 Corinthians 4:16-18 so encouraging this week "So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For the light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."