Please take the time to read Kristin’s update on Isabella, now 9 months after her journey began. And if you can find it in your heart to help them out, please donate by clicking on the “ChipIn” link in the right sidebar. Thank you!
This past Thanksgiving my beautiful, bright, funny, outgoing 4 1/2 year old daughter suddenly came down with acute encephalitis. Within 24 hours Isabella went from being a little girl who attended preschool, played soccer and who was advanced for her age to a child who was literally dying before my eyes. Isabella’s organs were failing, brain swelling, difficulty breathing, seizures etc. Isabella was not expected to make it. My daughter is the one in a million to survive and she truly is a miracle. When Isabella came out of the coma she had lost the ability to do everything. She was literally in the state of a newborn except a newborn can move their arms and legs, Isabella couldn’t. Isabella spent a month in the hospital. We currently are in Boston receiving therapy and medical treatment 4-5 days per week. My daughter has brain damage that has caused her to have seizures, tics, migraines, anxiety, and symptoms of ADHD, mood disorder, aggression, ODD, sensory issues, depression, developmentally and behaviorally delayed to about 2 years old, learning disabilities, visual and audio misperceptions (similar to hallucinations and delusions), and so on.
As we approach the 9 month mark of Isabella’s Journey, things keep getting harder rather than easier. The last MRI showed more damage to Isabella’s brain. She will have tics, migraines, seizures, hallucinations and delusions for life because of the damage. The hope was that someday Isabella will be able to be a self sufficient adult. That hope relies heavily on being able to get the emotional, behavioral and psych deregulations under control. This has proven to be extremely difficult.
Since the MRI Isabella has been on a steady decline emotionally, behaviorally and psychiatrically. I have been fighting for months to get someone to do something. Nobody listened. Some of the things that Isabella is dealing with everyday includes the worst ADHD that they have ever seen. Isabella races around so much that she becomes physically exhausted but can’t sit still long enough to sleep. Isabella has anxiety like I have never seen. Isabella is terrified to go outside because she is faced with the very things that she has hallucinations and delusions about (bugs, sounds, etc). Isabella is terrified of people especially kids and it can lead to a full blown panic attack. Isabella is so impulsive and some of her behaviors are extremely concerning particularly the OCD tendencies. Isabella’s tics have become vocal where she grunts and growls uncontrollably. These particular tics scare her so she cries which only makes them worse. The sensory issues are the worst they have ever been. Isabella also has such low self esteem and symptoms of depression that it literally breaks my heart. Isabella continues to have seizures when she sleeps. There have been a lot of questionable moments when she is sleeping that no one can explain what is going on. Doctors continue to pass Isabella off to another doctor, who in turn passes her off to someone else. There is a lot of finger pointing as to which specialty is supposed to help Isabella. While I can appreciate the honesty that no one knows what to do or what is wrong, that doesn’t exactly make me feel confident in anyone at this point. Isabella is still not stabilized and it’s been almost 9 months. I am being told that the goal is to “improve her quality of life”. Apparently they have given up on the recovery goal but I haven’t. I know that they are missing something and I will fight until someone helps my child.
Treating Isabella has proven to be a huge challenge. The damage that Isabella has to her brain makes some medications not work at all. If the medication works it has an opposite effect and makes her appear like she is on speed times a million. Isabella being only 5 1/2 years old limits medication even further because a lot of the drugs she needs are not used with children. Her team of doctors are coming to a point where they don’t even know what to do. They finally see the decline that I have been talking about for months and now aren’t even sure how to help her. I am being told to get second opinions, which I had already started to look into. I have found that second opinions are so hard to get. There are insurance limitations, red tape and a lack of services in Massachusetts for children (and adults) with brain injuries.
We have been on a waiting list for in home services for over 4 months. We recently got a call that this organization (that specializes in brain injured children) doesn’t have anyone qualified to help Isabella. They want to transfer Isabella’s case to someone else’s waitlist pushing services out even further. There are no other programs in Massachusetts that provide this in home service to children with brain injuries. The previous speech therapist had her own thoughts and ideas (just because my daughter looks “fine” doesn’t mean she is) and refused to give her the care that she needed. So I got Isabella on a waiting list at another place while she was receiving speech from the existing therapist. We waited 4 months for an evaluation only to be told that Isabella now had to sit on another wait list to receive services and that would take at least 5+ months. Then I was notified that Isabella requires more speech therapy than they can offer so they dropped her entirely. I had to scramble to find speech for Isabella. I have found a new speech place and Isabella will start in a week. Isabella’s existing Physical Therapist was leaving so we were transferred out. The new Physical Therapist took Isabella and then decided that she didn’t have room in her schedule to treat her. I fought like crazy to get this therapist to see Isabella because the waitlist everywhere else was months out. Isabella is going to have sporadic Physical Therapy until I can get her in somewhere else. Occupational Therapy continues to be great and I truly feel that this therapist gets Isabella. Once a week Isabella receives dog therapy. We are so blessed to have an amazing dog therapy team that genuinely cares about Isabella. Isabella absolutely loves her visits and after a hard “work week” it’s a nice way to end it.
Financially we are struggling. In Massachusetts, there are almost no programs that can help us. I have applied for everything I can and we are on waitlists that are years long. I have resigned to the fact that I have done everything I can financially and the rest is out of my hands. I have to have faith that somehow, some way it will work out. After all faith and prayers is what saved Isabella.
Thank you all for your continued love, support and prayers.
