I wanted to check in with you all and give you an update on how we are all doing.
So many of you have asked when we will get our service dog. I wish I had an exact date to share with you all. We are eagerly waiting to be matched with just the right dog that will be able to assist me with my specific needs. We raised all the necessary funds and are on the matching list waiting our turn. We have not been given any kind of time frame which makes it very hard to be patient. We eagerly await the day I can start my handler training and introduce you all to our new friend.
Mel- I’m super thankful to be on the other side of those four surgeries. The wires are securely in place, I’m slowly regaining my strength and energy, and getting back to some independence. It feels good to not be the patient and to be Mom and wife again. It’s great just to be able to do normal things like school shopping or taking the kids for ice cream. My heart is doing good for the most part. I have Cardiomyopathy(weakening of the heart muscle) however my heart is functioning well. Overtime it will get weaker and weaker so we will start me on some preventative meds early to try and keep it stable. My G-tube has been tricky getting use to the feedings and amounts. My weight has essentially stayed the same and sometimes gone down by a pound or so. My Gi is not so concerned with the number on the scale for my weight as what my albumin levels are. If my albumin levels are good then the G-tube is serving its purpose and I’m fine and he is happy. It’s been an adjustment but we are working out the kinks.
Noah had an amazing trip to Japan. He fell in love with the country, enjoyed the people, the food, his team, the culture, and doing ministry. He really wants to go back next year and even grew a heart to teach and live there in the future. Oh Boy! God has big plans for this boy. Noah went to Hume Lake camp this year and it was very hard on him physically. It’s a challenge at his age to have to face his limitations and make hard choices. He tires easily, gets out of breathe, and feels the challenges of doing physical activity. He continues to go to the Muscular Dystrophy clinic and cardiac transplant appointments. We are noticing mild progression but more than that a matureness beyond his years as he accepts whats in front of him and relies on the Lord. He said the other day how thankful he was for the strength God has given him up to this point. He encourages me daily with his amazing attitude regarding his challenges.
Hannah is doing great. Since she is getting older her cardiologist wants to order a heart stress test and cardiac MRI to see how well she is tolerating activity and to see how the anatomy of her heart is doing. It’s amazing that this sweet girl is functioning on a single ventricle and 17 other heart related issues. You would never know it by looking at her. She is full of energy most days and I have to remind myself to be grateful for that energy :) She is looking forward to going to traditional school this year and still has big plans to be a cardiologist.
Jonah continues to bring the fun and funny to our family. He is our constant entertainer. He is a huge helper to mom and can make me smile on even the hardest of days. He has a huge heart and constantly leads our family in bible time.He recently moved up to the middle school youth group at church. Gulp! He enjoyed a week up at Hume Lake camp with the youth group. He had a blast. He is enjoying the summer and looking forward to getting back into theatre when school starts. We are so thankful that God has protected his body and continues to keep him healthy.
Jason continues to be the rock of our family. He carries so much on his shoulders that I don’t know how he does it most days. He works hard both at his job and at home. So thankful for the ways he pours into our children, myself, and others. We are learning to not take little things for granted like slow dancing in the living room:) Am I the only cheesy one that does this? Do you all hear a song and think of your spouse or a loved one? This is my recent song to Jason https://youtu.be/lp-EO5I60KA Ok the first line says "When your legs don't work like they use to before" yep I cried after I heard this one but then he turned around and says well this is my song to you https://youtu.be/w2CELiObPeQ and I was a balling mess. We are sometimes sappy like that and I love it. We are grieving a lot of things. We both don't always do it well in fact it's easy to take the pain out on one another. We need lots of grace with each other and the Lord. It's a lot what we face on a daily basis and sometimes we do it well and sometimes we don't but at the end of the day we LOVE each other and we LOVE Jesus and we have a hope that is greater.
We are thankful for the ways God continues to meet us and provide for our needs. We are grateful for your prayers and the ways you all walk beside us.