First FA Clinic Visit

Today was a memorable day being our first glimpse into the Cincinnati Children’s Hospital & the Fanconi Anemia Comprehensive Clinic. We were absolutely thrilled with our initial visit. The drive into Cincinnati is a breeze for us too!  We met with Robin, one of the nurse coordinators and Dr. Mehta who is the bone marrow specialist & Hematologist. Elias was in a playful mood for much of the visit, smiling and playing for them. They told us considering all the medical history, continuing issues, & surgeries Elias already has in his short time thus far, he look much better than they expected. That was great to hear. we went head to toe in terms of his issues and identified the teams that would need to be brought on board for his management. We also discussed some of the clinical trials and testing that is going on with research for FA and which Elias might benefit from now and potentially in the future. We all agreed that currently his greatest needs & focuses are with the Aero digestive issues (Pulmonary/GI/ENT), feeding and growth, hand surgeons (if for nothing more than a consultation) endocrinology, and colorectal (imperforate anus pull-thru) experts. Robin will coordinate and set all of this up for us. That in itself is a HUGE help. It feels great to have a plan other than wait and see. The wanting to move forward rather than being accepting of holding ground, being proactive rather than reactive is the overall theme of what we want to accomplish. It makes sense too if you think about it. This is a great time to correct some of the outstanding issues. The less he has to battle with his body during transplant the better off he will be. Outstanding issues and unresolved problems will only add to the challenge when that time comes. So as we hoped the plan is a bit more aggressive and that is in turn due to the knowledge these doctors have. They were very forthcoming and open yet simplistic with their approach. It was extremely personable and more like a coffee table conversation than a doctor appointment. Several of the FA parents told us how incredible it would be, based on their experiences. They were very right, and we are glad we took it another step and moved here to make them more accessible.

Also today we finally were able to get the loose ends tied up to get Elias a feeding pump, thanks again to the FA team. This will enable us to send back the equipment we had in Maryland. We have a few days yet before they will start calling wondering where it is, but it is a relief knowing that it is settled on this end. The only worry we have on this right now is the length of time it will take to get the State Medicaid approved through the system and our very low DME benefit on our primary insurance. Hopefully, it will last or we will be footing even more medical expenses for this equipment. We also began the intake process for states version of Infants & Toddlers. We hope to resume some of his therapies in the next few weeks.

Finally today we received a copy of the ABR report. The opening letter of the report states the following,

“The hearing loss that was diagnosed via ABR is significant, however, can be treated. It is recommended that you meet with an pediatric ENT to develop a plan for possible medical intervention of Elias’ hearing loss and to obtain medical clearance for audiological intervention.”

The report continues to explain the results, but in technical jargon as this report is obviously generated for medical professionals and not parents. We will elaborate more on this when we have gained an understanding either through explanation or our own research to decipher meaning and context. This would certainly explain why the audiologist from Infant & Toddlers and the Maryland School of the Deaf were pushing so hard to get the report before the move. They knew it would be useless to us without explanation and delayed with the beginning of new services in our new state.

All in all a very bright and productive day I would say. It was comfortable from the beginning and we were quickly reassured that this is where we are meant to be.