It’s been a crazy week full of emotions. My mom, Jordan and I ventured to the Cleveland Clinic for her 6 month check up with her urology doctor. She had a good report saying that there were no signs of cancer in her renal system. We are so grateful for the results because she has been waiting 2 years to be cleared to venture to Guatemala on a missions trip. She will be leaving this weekend with a team for 11 days at an orphanage. Please pray for the team as they travel.
Our myelo clinic appointment at Akron Children’s Hospital started bright and early at 7:30 a.m. The journey began in radiology for Jordan’s ultrasound of his renal system. He also had an ultrasound of his head to check to see how his shunt is working. I am amazed at his demeanor. He was so content and still as they took the pictures of his sweet body. Of course it may be because he is photographed around the clock by his parents! He was so cute while he was lying on the table gazing back and forth from the ultrasound tech to the screen. We’ve been blessed with one observant child.
We finally made it up to the myelo clinic to meet with a slew of specialists. Dr. Kerwyn Jones, the orthopedic doctor, and Judy, the physical therapist, were our first visit. They were pleased with how well Jordan is doing as far as movement and flexibility of his toes. It’s hard to say where he’ll be at as far as walking because we still aren’t sure which movements were affected. We discussed how Jordan’s right leg tends to turn out. Dr. Jones said he would contact a specialist to visit to assist in making a strap for Jordan to wear while he is playing. This strap will help strengthen the muscles in his hip so they will be in alignment when he starts to pull up, and Lord willing, walk.
Dr. McMahon, the urologist, and his nurse Amanda read the ultrasound and we were excited to hear that his urinary system is growing like it should. Jordan will need to come back in 3 months for another ultrasound and he’ll need another urodynamics test in the spring. They like to monitor the urinary system to make sure the urine isn’t backing up into the kidneys. We were pleased to report that Jordan continues to fill his diapers and occasionally surprise us with a little spray.
Dr. Hull, the myelo pediatrician, reported that Jordan’s organs feel like they are functioning and doing what they should. We asked our questions regarding his floppy airway, feeding, and recent episodes of discomfort. Dr. Hull said as long as the breathing isn’t consistently labored or funny sounding, Jordan should be ok. The concern is that the Arnold Chiari II malformation in his brain could be pushing on the cranial nerve, causing complications. We are free to start rice cereal when we want and the crying may just be gas causing discomfort.
Dr. Hudgins and his physician assistant Holly were our last specialists for the day. We have a lot of confidence in the two of them. We feel very comfortable with them both as professionals and people. Dr. Hudgins said that Jordan’s ultrasound of his brain was a -/+. There was a little more fluid in the ventricles than the last time and his head circumference is measuring higher. Dr. Hudgins wants to see Jordan back in 2 weeks to recheck. It’s better to stay on top of these issues to avoid more complications. As parents, it’s frustrating that we haven’t noticed any obvious signs of the shunt not working properly.
We are trusting our Creator that if there is a need for another surgery, that He is in complete control. We fall more and more in love with our little Peanut every day. Please continue to lift him up in your prayers as we prepare for our next visit.
We are thankful for 2011 as it has shown us to trust in our Heavenly Father on a higher level than ever before. Jordan Matthew is such an amazing blessing to us and we thank God everyday for bringing him how he is to us to care and love him with all of our hearts.
Read more about Megs and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.