That brings up a very interesting point. I’ve noticed over the past two weeks that she is like a newborn, going through stages of development again (with a few exceptions). She is holding her head up but it’s very wobbly. She is cooing and aahing, trying to vocalize just like a baby. When anything touches her lips she has an immediate reaction to open her mouth just like a baby. Now she is going through that chewing/teething stage (but without teeth coming in). Thankfully, we have never lost her smiles, and she has had some control of her legs throughout the last 2 months. I have jokingly told some friends and family that she is the only “newborn” that has Finding Nemo memorized!!!
There is a tough thing to discern right now. We dropped another dose of seizure medicine and it’s hard to tell if some seizures have returned. They look so similar to the involuntary movements. I’m hoping this infusion will help us to determine if they are seizures or involuntary movements. Hopefully, if they’re involuntary movements, they will continue to calm as they have been but if they are seizures, they won’t. Please pray we have discernment to be able to identify and then make the decision about halting the decrease or continuing.
She is once again taking a good nap today. I’m thankful that I’m figuring out the best way to structure the infusion time so that she is able to take that nap. I’ve also learned the white noise app has a big part in helping her stay asleep. Praise the Lord for those little things that help.
She is LOVING school. We were able to have her IEP meeting this past Tuesday. We have made some changes to her school day and spoken with her therapists to establish goals for her. We are very pleased with the team that is at school to help her. They are all wonderful people that truly have a heart desire to help, not just Joyanna but the children there in general. I’m really thankful for that spirit in them. They say Joyanna is all smiles at school and is doing well interacting with peers and being involved in activities. They have so many resources to help her be involved—button switches, smart board, name stamps, visual helps, etc. They do a lot with music and she loves that. We’re excited for the progress she will make being challenged and motivated daily.
Philip is doing okay. The increased congestion has brought about a little more vomiting but not as much actually as I expected. Elizabeth is staying on top of things with him and they are settling into a routine that is working well. His lungs are staying clear and he is still able to help us by coughing or swallowing some of the secretions. I’ve been appreciative several times over the last weeks about having Elizabeth there to help us. I’m thankful to the Lord for working it out in the timing He did. I just wouldn’t have been able to do most of the things I’ve needed to do with or for Joyanna without Elizabeth there to allow Philip to stay home and comfortable. She has even told me that she is learning things from Philip, not just from taking care of him but from Philip’s life. I was thrilled to hear that because I feel like those are the same lessons the Lord has used Philip to teach me.
Our church is hosting an international meeting for pastors and missionaries. The last day is today. I was able to watch the service by live-stream on Monday evening and able to attend last night. (Ben and I are trading off once again. Live-stream is a huge blessing!) The singing and preaching have been so wonderful and my soul is just so full. Ben attended this morning’s service and I get to go again tonight. I’m excited to once again be able to praise the Lord with all the believers there and be challenged to continue to do so. Because of the meeting, my family has been in town. My dad, mom and brother are staying at my house and we have enjoyed it so much. Granny is watching Ethan today for us and I’m sure they’re having a great time. He is learning to play games and loves it. Go fish, Memory, Candy Land, and Whac-a-mole are a few favorites. He was going to ask Granny to play all his games with him today. Oh, and work puzzles. Ben also built him a “ninja course” in the back yard so he’s been working on and showing off his ninja skills to anyone who would watch. My parents get to stay until Saturday morning so we are excited to have a few more days with them.
Well, Joyanna is waking up now so I’ll go. I’ll leave you with this song. It’s an old familiar song to many but I was struck with the powerful words recently.
Blessed Assurance
Blessed assurance, Jesus is mine!
Oh, what a foretaste of glory divine!
Heir of salvation, purchase of God,
Born of His Spirit, washed in His blood.
Refrain:
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.
Perfect submission, perfect delight,
Visions of rapture now burst on my sight;
Angels, descending, bring from above
Echoes of mercy, whispers of love.
Perfect submission, all is at rest,
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.