I fully intended to be better about updating you all on Logan's progress, but as you can imagine, life is a little more complicated than before. Free time is hard to come by. I do want to be sure our friends and family have updates though, because you all have been such an amazing support system for us. I know there are so many people concerned about our little one and praying fervently for him.Last I updated we were still in the PICU and slowly lowering the Versed drip. Thankfully, that went well and our little fighter improved each day. We had a bit of a rough week with many ups and downs - some vomiting, difficulty keeping his temp up and quite a bit of agitation and irritability. But, the seizure activity progressively improved, and we were able to move out of ICU to the floor on Monday, April 23rd.
The next few days were trying. He had lots of trouble sleeping in the hospital - and really, who can blame him? So by Thursday, we were pretty spent. We had had enough of hospital living, and pleaded our case for discharge to the doctors and nurses. Really the only thing they were monitoring at this point was his food and fluid intake, and we were confident that we could do that from home. Thankfully, they listened and allowed us to go home on the 26th after some consulting with the nutritionists and setting up in-home weight checks to be sure he didn't backtrack.
During the first week home, we saw improvements each day. We were able to spend lots of time together - enjoying the beautiful weather, going to the Arts Festival, the park and hanging out with family. His eating and drinking wasn't improving much, but we were able to maintain his weight.
On Thursday, May 3rd, as we loaded Logan up to go to physical therapy, we looked back at him in his car seat and noticed his left cheek and left side of his mouth twitching repetitively and rhythmically. Trying not to be too alarmed, we proceeded to the Children's Center for therapy, knowing they have an excellent medical staff that knows Logan and could provide some more insight on whether or not this was something to be concerned about. They decided to forgo therapy for the day and sent us on to our neurologist's office. On their recommendation, we tried another medication to get the twitching to stop. Unfortunately, that was unsuccessful. We went back on Friday to get a different prescription. Thankfully, Logan responded really well to it over the weekend and we were pleasantly surprised with how few side effects he had.
Last week was full of follow-up doctors appointments and therapy appointments, which kept us all pretty busy while we awaited results from the genetics tests. We were expecting to hear something from the lab by Friday, and unfortunately Friday came and went with no word from them. This didn't come as a huge surprise to Jeff and me, but was still discouraging. As of today, we still have not heard about any results. We were, however, able to enjoy a fun-filled weekend celebrating our cousin's birthday and our moms, Gigi, and Grandmother.
While every day seems different with this new perspective on life, I have to say that Mother's Day was especially sweet. I was able to reflect on what a powerful calling God has for me in being mommy to these two boys. I am so insanely blessed by them and the joy they bring to my life. I can only hope and pray that they come to know how deep and pure my love for them is, and that the love I have for them is only a fraction of the love God has for them. I won't lie and say that I spend all day with such peace and clarity. Most of my time is spent in a state of some sort of stress, anxiety, worry, exhaustion or frustration - about the fact that Logan won't eat, or his meds make him throw up, or he can't sit up by himself for more than 5 minutes, or he cries out of frustration, or that Griffin is becoming a professional at testing boundaries. I do my best though, to make a point to thank God for the blessings in the trial - the smiles and laughter only Griffin can get out of his brother, the willingness of both boys to give as many hugs, kisses and snuggles as we can stand, the rich conversation and strengthened relationship with my husband and the amazing community God has surrounded us with. We are so blessed, even though I don't always see it.
Next time I post, I hope to have results from our tests to share with you all. Thank you again - from the bottoms of our hearts - for all the love and support!