All About Max – 1 Year Old (14 months)
All About Max, is a monthly series about Super Mighty Max that we started last month, where we will give a comprehensive update on Max’s health and progress. My husband Brandon and I will continue posting regularly about Max and the trials, journey, and lessons learned in parenting a special needs child.
Neurological – Seizures
Max endured 75 days of getting a daily shot to help reduce and/or eliminate seizure activity. My husband wrote a post about how much it cost and our concerns here, please check it out. The shot did not work to reduce his seizure activity long term, it only worked temporarily. We started to see his activity pick back up as we reduced the dosage. The neurologist has increased his current seizure meds and will begin giving him valium next week. She has also recommended he go on a Ketogenic diet or a seizure reducing diet that consists of all proteins and good fat, no carbohydrates. It’s like the Atkins diet to reduce seizures and it has been studied here to work. Since Max is g-tube fed primarily, he will receive a new formula, and possibly some puree foods. We will have a short hospital stay in two weeks, to evaluate if the new diet will help, and how his body responds to the new formula. More details next month on how much his seizure activity has reduced due to this new diet.
Respiratory – Tracheostomy?
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 shared in this post. Max is still receiving his twice daily breathing treatment. Staying at home with dad is working well and I’m sure Brandon will update you in a month on his observations/adventures with Max.
We had a barium study completed earlier this month, that caused a major set-back with him eating food by mouth. The barium study showed him aspirating 2-5% of the food he ate. That means the majority 95-98% of the food was getting to his stomach with no problem, but the rest was going to his lungs. If this continued, with time it could cause him to develop pneumonia, or other respiratory complications. I mentioned before he suffers from Severe Tracheomalacia, and having any respiratory distress would lead to a ventilator and possibly a tracheotomy. So, the recommendation from the Occupational Therapist was to immediately stop feeding him by mouth. We from time to time, still give Max tastes of food, considering that he developed a love for certain tastes, like sweet potatoes and apples. I don’t want him to develop another food aversion, as he did before, once we stopped feeding by mouth. So, we are working with the Occupational Therapist to continue oral stimulation, by form of a pacifier and teething ring. We will wait until January when he is a little bigger to complete another barium study to see if he is still aspirating solids, and if we can begin feeding again. He has recently learned to grind his teeth causing one to chip very badly. So, thats something else we have to work on with him.
Max currently receives two occupational therapy sessions a month for feeding therapy. OT was going well until we stopped feeding by mouth. We had to develop new goals to accomplish with our OT. One of our goals is getting him to understand and speak certain words. This is hard to do as of lately, because he has outgrown his ear molds for his hearing aids, and one ear mold broke as a result. We are getting new ear molds and will work with the OT to also get him to say certain words. He was saying “Hi” when he was consistently wearing his hearing aids 24/7, but as of late it isn’t as clearly articulated.
Developmental Skills – Fine Motor and Gross Motor Skills
Max is considered developmentally delayed because he isn’t doing what “typical” 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. We were fitted for a stroller, stander, and he will soon be fitted for leg braces and arm braces. Medical equipment is very expensive, and insurance doesn’t cover everything. We are considering ways to fund paying for the out of pocket expenses that insurance doesn’t cover for his medical equipment, while we wait for our federal and state medicad approvals. Any ideas? Please drop me an email at firstname.lastname@example.org
Max receives physical therapy weekly and has received therapy since he was 1 month old. 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. PT is going well thus far. Still working on head control, sitting up, trunk control, and even bending knees when on his tummy. Max loves to be held, and will allow us to do so all day, if we don’t exercise or move him. We all (our village) make sure he gets plenty of exercise and that his limbs stay loose as possible. Since he has been off the seizure injections, we have noticed increased stiffness in his limbs, therefore it is imperative that we continue to move them as he grows.
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 completed a vision exam recently, and the optomologist recommended that he receive corrective surgery on both eyes to help loosen the muscles, which will help his eyes from lazily drifting as he continues to grow and develop. That surgery and evaluation is scheduled for next March.
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Keep the Faith!