Once again...it's been awhile

Wow...where to even begin since it's been almost 2 months since an update. Time is getting away from me these days. Anywho...Liam's g-tube and nissen surgeries were pulled off without a hitch. He was discharged after 24 hours in the hospital. But, that wasn't the end. He developed an ileus (a blockage of sorts - his was caused by a swollen sphincter from the nissen fundoplication) and had to be re-hospitalized less than 48 hours after discharge and put on complete gut rest. He got out after a couple days and life seemed to go well for a few days. He had a follow-up EEG and neurology appointment toward the end of May. The EEG showed no seizure activity but showed moderate background slowing - confirming he is delayed.

Then, the fun set in about a week or so after that. He screamed literally for 3 weeks on end this month - had pneumonia/bronchitis again, more GI issues leading to a formula change, heart rate and oxygen sats all over the place (bradycardias in the 60s and tachycardia less than 24 hours later over 200). So, we had another EEG this week. Again, no seizure activity during the test but there is no improvement from the last one, either. So, now the doctors are saying all the issues I mentioned are being caused by the damage to his brain caused by the infantile spasms/west syndrome.

He has been smiley for 3 days, now, until today...when his switched flipped again and he was once again screaming. His moods are inconsistent and just all over the place. We are also in the process of getting him a wheelchair and some equipment (special seating) for the house. In addition, we had to bite the bullet and get him a disabled parking pass for when we're out and about.

Ok, enough negative. Liam is such an incredible baby. He is so laid back and even though he's experienced a lot of pain and frustration in the last couple months, he is SO smiley when he's in a good mood.