Knox was born with a rare vascular condition, Venous Malformation. The journey of discovering what exactly this means, how extensive, and seeking treatment has been a rollercoaster of great proportions. While venous malformation is rare, Knox’s presentation is even more rare. VM’s usually occur in a localized lesion or tumor, whereas Knox has VM’s throughout his body, head to toe.
A very brief summary of what this looks like: Knox looks 'bruised' and deals with chronic pain, swelling & inflammation, poor muscle tone and a few other complications.
Early on in our search for treatment, we were directed to Boston Children’s Vascular Anomalies Center. This was a game changer. They were able to review our file and give recommendations remotely. Living in Birmingham, we have an amazing team of physicians to treat Knox as best they can, but due to the complex nature and location of the VM’s, our physicians have all agreed it is time to travel to Boston for several procedures.
After almost two years of chasing down records, consulting with specialists, and navigating a bunch of red tape, we had our first E-visit with the highly skilled Boston VAC team on October 5, 2020. This was SOOO exciting! A plan of action was discussed and the logistics of scheduling a clinic visit with six surgeons at one time has begun. We hope to have the exact travel date soon!
The tentative plan is to attend a Friday clinic and proceed with the first surgery the following week. The treatment plan will involve several trips to Boston with surgery on his airways being the top priority for the first visit. This will include the lip, tongue, jaw, and airways with a possible removal of tonsils/adenoids. Some of the details will not be nailed down until he is seen in clinic, and the recovery will be pretty intense - we were told to expect up to two days in ICU to monitor swelling.
Please pray for our family. Pray for Knox - he is no longer an unaware toddler, but a seven year old who doesn’t want to hurt anymore, but is nervous and scared about what’s to come. Pray for all the logistics involved and guidance in parenting all the kids through this time.
Thank you for your prayers and we will be updating regularly!