From a cardiology standpoint, Adelyn has been going yearly since 2021 to monitor the PDA closure device and blood clot in her heart. Last month, her ECHO showed that the closure device is still stable as it should be and also that the clot in her right atrium from the umbilical lines she had in the NICU has actually been reabsorbed by her body and is no longer there! We will go back in 2 years for another ECHO and if things are still stable, Dr. Walz said he will sign off on Adelyn all together from a cardiac standpoint! An answer to prayers for sure. 

We continue to see genetics yearly related to Adelyn’s chromosomal deletion and neurology every 6-9 months to follow her development. Dr. Ward (genetics) commented at one of our first appointments that when he looked at her diagnosis and history on paper, he did not expect to walk in the room see and such a happy, healthy little girl talking to him and climbing up on to the exam table. With how large her deletion is, he would have expected to see more physical and cognitive limitations than he did- an incredible reminder of the miracle that Adelyn is and how good our God is for sure! Adelyn does show some motor and speech delays primarily, but she doesn’t let that keep her from running around, climbing, riding tricycle and talking in full sentences! She continues to steadily gain ground and new milestones- just on her own timeline, like always!

After Adelyn got her PE tubes in April 2022, she continued to fail her hearing tests in the audiology office so in August 2022, Adelyn had an Auditory Brainstem Response (ABR) test done under sedation. This is hearing test that records brain wave activity in response to sounds emitted through earphones. She passed so we didn’t go back to audiology until this past August for her annual follow up. She again failed the hearing test in clinic two separate times this fall so we went back to see ENT. He found that one of her tubes had come out as they are designed to do over time but one was still in place. It was decided that Adelyn would have surgery to remove the remaining tube and place a patch on her ear drum as well as perform another ABR while under anesthesia. She had both done yesterday and we did receive new news from the hearing test. Adelyn’s ABR showed that she does have hearing loss in both ears- moderate in one ear and severe in the other. Because of this, Adelyn will be getting hearing aids in the next couple of months. The hope is by improving her hearing, she will make even more improvement with her speech and will overall improve her quality of life by allowing her not to struggle to hear so much! We’ve known since getting her chromosomal deletion diagnosis, that she was at increased risk for hearing loss but it was still a hard pill to swallow hearing them say that she does have hearing loss and that it was as significant as it is. But we have an incredible team that will help get Adelyn the assistance she needs!

It was three years ago to the day that we first met with neurology outside of the NICU and that they did the bloodwork for the genetic testing that gave us the diagnosis of Adelyn’s chromosomal deletion and led us down a road of new specialists and an increased importance on receiving all the necessary therapies to support her. It has been a roller coaster at times but I have recently found new meaning and hope in a well known Bible story found in John where Jesus heals a blind man by rubbing mud on his eyes. The story found in John 9 opens with Jesus and His disciples coming across the blind man mentioned in this story. The disciples were asking Jesus whether it was the man or his parents that had sinned and led to his blindness. Jesus answers that the man was not blind because of any sin committed, but rather it was so the miracle of Jesus restoring his sight could take place and the greatness of God be displayed to the world. 

No parent ever enters parenthood expecting to walk the road of a child with special needs. But God has chosen some of us to walk this path and I have found that although it can be so hard at times and comes with a schedule full of specialists, therapies and learning to roll with the punches, it has also provided me with a front row seat to watch a miracle unfold before my very eyes. Every. Single. Day. And I’ll admit this is a blessing I so often take for granted. I am so thankful for God’s grace and mercy. He knew we needed Adelyn and He has blessed us time and time again through her life. As Thanksgiving quickly approaches, I am reminded just how good our God truly is and that His plan is far better than anything we could ever imagine. He just asks that we trust in Him while we watch those good plans unfold.

We are also so incredibly thankful for our village that loves and supports us daily. Thank you for following along with our miracle and I pray that Adelyn’s light will continue to shine and show you all just how good our God is!