All About Max – 1 Year Old (13 months)
All about Max is a new monthly series on Super Mighty Max where we will give a comprehensive update on Max’s health and progress. My husband and I will continue posting regularly about Max and the trials, journey, and lessons learned in parenting a special needs child.
HIE – Cerebral Palsy Diagnosis?
Hypoxic Ischemic Encephalopathy (HIE) is a fancy way of saying Lack of Oxygen, Restricting Blood flow that affects the Brain. All of Max’s special health needs and concerns stem from how he was born and not having oxygen to the brain. Most children that have an HIE diagnosis end up getting a former diagnosis of Cerebral Palsy. Cerebral Palsy means oxygen loss to the brain and has many forms/types. They (Neurologists) do not diagnose babies until they are around 2 years old with a specialized type of cerebral palsy, because the brain develops vastly up to 3 years of age. We know that Max will eventually be diagnosed, but are unsure what classification type he will fall under.
Neurological – Seizures
Seizures are another common occurrence for those with HIE. Max started having seizures around 3 months of age. It started with a twitch of the face to fully jerking moving of the arms and now head drops. Numerous EEG, 24 hr EEG studies with overnight hospital stays have been completed to give him an infantile spasm diagnosis. However, it never could be determined via EEG because of where his injury is located in his basal ganglia. We knew he was still having seizures so we started to “experiment” with different seizure medications. We are now on a medication that can cause vision loss and another injection my husband posted about that affects his blood pressure, blood sugar, and causes breakouts.
This is a picture of him last Sunday sleeping during church. I know I’m vain because I don’t want to see him broken out like this, but the ACTH injection is proving to work thus far and we have ~25 days left of giving him a shot.
Respiratory – Tracheostomy?
Max started having respiratory issues when we moved back to VA and he came down with the RSV virus. RSV is a regular common cold, but in premature babies it can be deadly. Max has always had a somewhat staggered breathing pattern and it is due to his severe tracheomalica (floppy trachea). If Max gets a cold he is unable to cough up the phlegm and it could cause breathing difficulties. The concerns of the Pulmonologist and ENT doctors is that if he is unable to pass phlegm and needs breathing assistance via a ventilator he will need a tracheostomy in order to breath. We have a goal to get Max through the next two winter seasons with no colds, so that means taking him out of daycare as my husband share in his post on Tuesday. Next month we will discuss from a Special Needs POV all the ins/outs, preparation, dos/don’ts around Flu Shots/RSV/Cold season.
Gastrointestinal – Reflux gone?
Max still is on reflux medication although he did receive a Nissen surgery during his 2nd G-tube placement. He still does receive 50-75% of his daily intake via G-tube. We are working on him eating 3x a day and taking a sippy cup 2x a day. The goal is to be fully off the G-tube and 100% fed by mouth by 2 years old.
Max currently receives two occupational therapy sessions a month for feeding therapy. He is doing so well with taking baby food by mouth and using a sippy cup. Max decided he didn’t like the bottle and bite the nipple in half causing milk to spill all over him. Since then he has been taking a sippy cup with no problems. We have moved to stage 2 baby food and are going to be consistent feeding him 2-3 meals a day with 2-4 sippy cups a day. Our overall goal is to be completely fed by mouth of course and eventually remove the g-tube. We are making great progress and its up to Max how fast he wants to go toward that goal.
Developmental Delay – Fine Motor and Gross Motor Skills
HIE affects the part of the brain that controls fine motor and gross motor skills. Max is considered developmentally delayed because he isn’t doing what “normal” kids his age are doing like crawling, walking, and talking. I don’t like the term developmental delay because a delay is not denial. I like to focus on what he does well rather than what he hasn’t accomplished. Max is working on head control, sitting up on his own, and holding his body up. His physical therapist works his lower body and opens his hands up with athletic tape.
Max receives physical therapy weekly and has received therapy since he was 1 month old. Since HIE causes muscles to remain tight the PT works him out stretching him to develop muscle memory. The goal is for him to start moving the muscles we work out and begin moving more on his own which will eventually lead to sitting, standing, crawling, and even walking with assistance or on his own.
Max still wears hearing aids and now is at the place where he needs new molds and another hearing exam to determine the spectrum of his hearing loss. When he was 2 months old he was diagnosed with mild to moderate hearing loss. The good news his hearing loss isn’t progressive although he will have to wear them for a lifetime.
Max is currently taking a seizure medication that with prolong use can cause peripheral vision loss. A requirement of taking this medication is that he receives a vision exam every 3 months. We are due for another eye exam very soon.
Keep the Faith!