Grant our fighter

Shabbona, IL, USA, February 2021 by Jill (Grant’s mum)

Grant has been our fighter since day one! He was born September 1, 2018. Finding a diagnosis for Grant has been quite the process. We experienced several unexplained scenarios in his first few months of life! It all started on the day he was born. He was having a very difficult time keeping a steady heart rate during delivery. Then shortly after birth he was having a hard time breathing so he was placed on a CPAP machine and spent the next day or so in the NICU. We got to go home for one night before we were sent to Central Dupage Children’s Hospital for the next few weeks due to unexplained hypothermia. He was released and we got to spend some time at home until one evening he just became very confused eating. It was like he forgot how. We found out that he had lip, cheek, and  tongue ties so he had to see a specialist to have them all laser cut. We did the stretches around the clock and things were starting to look back up again. Then we stated to notice delays in Grant. He was not sitting up, rolling over, holding his head up, ect. We reached out for help and they recommended we start physical therapy so that’s what we did. That was going very smooth but Grant started to get chronic ear infections so we ran out of options for meds to “fix” the problem and a couple weeks later Grant was scheduled for tubes. The ear infections stopped and he could hear better so that was amazing . He got glasses because he had astigmatism. He was hospitalized again for seizure like activity. They did an MRI and found out that he had unspecified brain abnormalities to the left side. His EEG was normal so home we went with follow up to nuero. Blood work was done and one level sent him to Chicago to have a nuclear medicine bone scan......again it was fine so back to the drawing board we went. Grant was still having “staring spells” so this landed us another hospital stay for a 48 hour EEG. This one caught misfires on the left side of brain where the unspecified brain abnormalities so they assumed brain damage from unknown causes and would follow up with another MRI after he turned 2. His sleep schedule was absolutely terrible and with the misfires they put him on seizure meds. They have helped Grant tremendously with his focus, attention, sleep, head banging, and staring spells. Another EEG proved meds are working!!! Amazing news but again why is all this is happening???  We are now in 4 therapies so we decided to take a trip to Mayo Clinic. Again they were confused as to what could be causing all of these issues. Nothing rang a bell so after tier 1 genetic testing came back normal we decided to do the WES and this is where we finally got our answer! Even though we don’t have a lot of information on this it answered so many things for us. Grant has been through so much and has seen every specialist under the sun and we finally have an answer! Grant turned 2 in September and continues to surprise us daily. Grant is not yet talking. He did just start walking a few months ago. Grant is a very strong and happy boy! We look forward to connecting with all the families who are on the same path we are.