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Follow up after Follow up

We had so many follow up appointments set up for once we were discharged.

Infectious disease- this was the doctor who was facilitating our whole plan. He put Beckett on the medicine for CMV. The medicine is very strong, and while babies are born with a weak immune system, this medicine just continues to weaken it. It actually kills his infection fighting white blood cells, so if Beckett were to get sick, he would have a really hard time fighting anything off. Beckett is getting weekly blood work to monitor those levels. They actually got so low that he had to stop taking the medicine for almost two weeks so his body can regenerate those cells. But we are back on the medicine, and keeping our circle close to avoid any sicknesses and keep us all as healthy as possible, especially difficult during Covid. We will continue to see him every month while we continue the Valganciclovir. 

Audiologist- Beckett had a more extensive hearing test. It tested both his ears on high, medium, and low pitches in loud, medium and soft levels. He passed everything. It also showed that the nerves between his ears down to his brain stem as healthy. So we will go back when he's 3 months old for another screening and see if there is any change.

ENT- If Beckett ever needs tubes, gets a lot of ear infections, or has any issues with his sleeping/breathing, we will go back to see the ENT, but nothing required there at this point.

Ophthalmologist- We will be seeing him soon. Stay tuned.

Pediatrician- They have been monitoring his weight, and will continue to give him all his vaccines.

Neurologist- the neurologist just confirmed everything we found out in the NICU. He has Lissencephaly. There are still calcifications in his brain, a cyst, and smooth parts all around his brain. The next step, the neurologist is going to do an EEG to see if he is at a higher risk for seizures by comparing his brain waves to the brain waves of a healthy baby of his age. That will be completed this month. He doesn't have as much head control as he should at this point, and he is also very stiff. His hand are clenched majority of the time, as opposed to being loose. This could all mean cerebral palsy, but we will continue to monitor his development before making that diagnosis.

ECI- Early Childhood Intervention. We had a meeting with the team to put a plan together for Beckett. They come into our home and complete different therapies on Beckett. Right now, we are just doing infant massage. The Physical Therapist will be coming back soon to do another evaluation on him to see if we can start on PT for his head control and stiffness. 

One great thing about ECI is they work with the military. When it comes time for us to PCS, we will only be able to go to places where they are going to be able to meet all the needs of Beckett medically.

So right now we just continue to love on Beckett, care for him, and help him to reach his fullest potential.





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