A lot has happened since our last official update. And all good things! In February we celebrated William’s first birthday. It was such a special day for us and we were so excited to share it with our friends and family. William has endured and overcome so much in his short life. The last year was challenging for us all, but we wouldn’t change anything about it. He has brought so much joy to our lives and continues to teach us more about what it means to love one another.

He is still attending his “school” at The Bell Center twice a week. And, recently we have started one on one feeding therapy once a week. We have seen a huge increase in his interest in food. He is still receiving all his necessary nutrients and calories through his feeding tube. But, we are letting him explore and eat what he wants by mouth. It is not a large quantity but it is definitely a huge improvement! The hope and goal is to eventually let him eat as many calories as he can by mouth and then supplement with his feeding tube. We have no idea how long that will take. For him, our main concern is getting enough fluids to keep his kidneys working and ward off dehydration. Right now he does not want to drink hardly any water or fluids, so we still have a long road ahead of us. This morning at therapy he did drink a whole yogurt by himself through a straw! I was ecstatic! He was very proud of himself as well.

At his most recent kidney appointment his blood work was stable from the last visit. His kidneys will never get better so we are always praying to get a “stable” report. Again, we are having trouble with his blood pressure and had to increase some of his medications. We are praying this increase in medication will lower his blood pressure to a more normal range for his age. The kidney ultrasound showed that his kidneys have grown about 2-3cm since his last measurement, which was about 6 months ago. We are expecting them to grow so we were not surprised. This is the nature of his disease. Overall, it was a good report and we are very thankful. We will go back in 3 months to check his blood pressure, but do not have to get blood work for 6 months! This is huge for us!

We are attempting to wean him off some of his acid reflux medications. We have successfully stopped one of them and haven’t seen any negative side effects. There are 2 more we are still working on. The goal is to get him off has many as we can without him vomiting or being uncomfortable.

This last weekend was The Birmingham Kidney Walk. We created a team, Wild for William, to honor his fight with chronic kidney disease. We had so many friends and family donate and walk with us. We are so thankful for all the love and support continually shown to us!

Tomorrow William will undergo a short procedure to help open his tear ducts. They will place a stent in each eye that will stay in for 2 months. It is a very routine surgery and we are hoping to be able to come home in the afternoon. It is usually done at an outpatient center, but his surgeon is taking precautions and doing his surgery at Children’s Hospital. Due to his kidney disease we want to make sure we don’t have any surprises. Please pray that his blood pressure will stay under control as well.

Prayer requests:

• Food therapy: that he would continue to reach his goals and eat as much as he can by mouth
• Blood pressure control
• Stable kidney function
• Weaning from reflux medications: no vomiting
• Surgery tomorrow: that it would go smoothly, no blood pressure issues, no issues from anesthesia, and that we would be able to come home
• Continued strength and rest for Matchett and me

William is so full of life and we are humbled that The Lord has entrusted us with him.

Thank you for following us on this journey,

Kaylee & Matchett