As we continue this story, I should mention that in May, Michelle was blessed to be engaged to an incredible man, Paul. Paul has four children, 2 or 3 of them will be living with Paul and Michelle at least part time after they are married. In Michelle’s words, “What a guy! And he is taking this on willingly.”
This update from Michelle is from last week:
In December we revisited the Orthopaedic Surgeon and with more x-rays found that Malachi’s back is now completely formed. While we were there, he called all of the other doctors over to view the 3 x-rays and they were having a little pow-wow over how amazing it was….God is truly amazing!
Throughout the remainder of ’09, Malachi continued to make small slivers of improvement in one area or another. He was gaining head control and able to turn and lift it for brief periods of time. He began rolling over. He began responding with “I” for Hi and “O” for hello. Although still very limited, improvement was seen .
Between the end of January and the end of March, Malachi was life-flighted 3 times to the large medical center in our area. The second life-flight ended in a 14 day stay and a g-tube placement. Since January there has been an ever so gradual decline in his”ease of breathing.” He has a lot of “strider” breathing, and although he is on high doses of seizure meds, he is continually having “breakthrough” seizures. These are exhibited in a variety of ways and depending on the “type” of seizure he is having, he needs to be treated with varying medications. Some shut his brain down to the point that he forgets how to breath, some shut down his ability to manage his swallowing and it becomes easy for him to aspirate causing pneumonia at any moment. There is no clear cut remedy, it is all by trial and error.
The last two weeks have been especially difficult. Seizures are becoming almost continual throughout the day and evening, some cause him to jerk and have involuntary movements, others cause him to cry uncontrollably and inconsolably for hours at a time.
We already had an appointment set to see his Neurologist this past Tuesday, so we held on and waited, expecting that they would adjust his meds and life would get back to “normal”.
I took Nick and Noah with me, and although Paul, my fiance, usually goes, he was unable to go this time. I asked both boys to stay in the waiting room, and was so glad I had. Dr. S. is a very compassionate doctor. And I was blown away, to say the least, when he got done looking at all of the recent info and meds and events and said, “We are going to change meds again and come up with a “game plan” for the future.
I would like to refer you for a “trach” evaluation. His breathing is very labored and this needs to be considered.
Have we talked about his “life expectancy”?” I answered “No”, but was beginning to wonder about that myself. He then explained the following, “Compared to other similar patients with much less extensive brain injury and optimum level of health care, their survival age was 8 years. Malachi is at the opposite end of the spectrum with the most severe we have ever seen in a child still functioning at any level, that alone shortens the time significantly.” He continued, “Do you feel he is in the right place at this stage of the game? You have not made a legal commitment to him and this is very devastating and taxing on the whole family. I can help you find a healthcare facility.” I responded, “I do believe he IS in the right place and NO that this is not what I expected and definitely not what I want to deal, with but we made a family decision back in March that we would continue to be Malachi’s family and with the right supports in place we CAN do it.”
I talked with Nick and Noah over lunch after the doctor’s appointment. Nick’s response was “God can still heal him, Mom. I was suppose to die and He healed me,” and ….and….and, he went down the list of his siblings. I then explained that “Yes….God can still heal him if He chooses, but if He chooses to heal him by taking him to heaven with Him, then how are we going to spend the rest of the time we have with him? We are going to enjoy each day we have, and know that he is here for a reason and that he is in our family for a reason.”
The kids have been amazing through all of this with Mali, each time he has been hospitalized, they get split up and shipped to different homes of friends and church family. When they come home, it is as though nothing ever interrupted their lives. I would like to say that disruption of schedule is difficult for any child, let alone a child with special needs who depends on routine and stability, so clearly GOD IS GOOD!!!
Paul and I have talked a lot this week about the future, mostly Mali’s and the impact on our family. We have chosen to be prepared and make plans for him if he leaves us and to enjoy the time we have while he is here. He has already taught us so much, and somedays I wonder if God is using him to build our faith in ways that could never be done otherwise. Is He saying “But do you still trust me? And what about now?. Do you still trust me? And now?”
Yes we choose to trust him, whatever the road, whatever the outcome, we have been blessed and we choose to trust!
Introducing Michelle’s Beautiful Children:
Meghan, 27, adopted at age 12, Rare brain disorder diagnosed 4th in the world, cerebral palsy, frontal lobe dev. disability, PDD NOS (not pictured)
Matthew, 17, adopted at age12, Down Syndrome, ADHD
Nathan, 12, adopted at age 9 months, Down Syndrome, ADHD, Autism Spectrum, 28 wk preemie, Drug and Alcohol
Mia, 11, adopted at age 5, Fetal Alcohol Syndrome, Cerebral Palsy, MR, 23 wk preemie, Drug and Alcohol
Nicholas, 9, adopted at age 2 wks, 30 week preemie, Drug and Alcohol, HIV, Hep B + C (now completely healed)
Micah, 9, adopted at age 18 months, Rare brain disorder diagnosed 5th in the world….cerebral palsy, frontal lobe dev. disability, PDD NOS (yes, same as Meg)
Noah, 8 adopted at age 2 months, 23 week preemie, g-tube, oxygen, brain bleeds……(completely healed)
Malachi, 23 months, adopted at age 7 months, multiple brain injuries, cerebral palsy, seizures, cortical visual impairment, failure to thrive, g-tube, oxygen
I will be writing one more follow up to this which will include some practical ways that you can help this precious family.