The past two months have again been filled with many obstacles and harsh truths. We have been working very hard with our team of doctors and nurses to find some way to ease Chloe’s ongoing seizure disorder. Their shape and their form change so often and it is so difficult to watch Chloe push through each and every one of them.
Chloe has remained on the Ketogenic Diet without much drama in terms of her tolerating the new milk. The only downside is that it is extremely constipating. Our hesitancy towards the diet, in the first few weeks, was that it didn’t seem to be helping Chloe’s seizure disorder. In truth, her seizures seemed to be drastically worse. The first few weeks home, we could not understand why Chloe was having such big seizure bursts. They attacked her. They exhausted her. She cried. She screamed. They came so fast and they were so violent that she could not keep her head up when they hit. There were days that I didn’t trust her in her wheelchair because her head would fall so fast and hard that I was afraid her vest would not hold her enough or that her head would fall to her tray. After a couple days of counting exactly how many she had, it was too much. One morning I counted 32 seizures in a half hour. The next, there were 25 in the same time. Doctors assured us that patients do not feel worse when starting the diet; rather they stay the same or feel better. Frantically, we returned to our doctor’s office to find answers.
The next couple visits included difficult discussions surrounding possible surgeries, more medicine trials and the inevitable discussion of Chloe’s quality of life and the reality of her prognosis. Heading into these meetings, Reth and I already knew that convincing us to consent to another surgery would be difficult. Chloe is too young for invasive brain surgery and she’s been through too much. We went in open minded, though, and listened to three possible options of surgery. The first two were highly invasive and included cutting into or taking out a part of Chloe’s brain. The third was less invasive but included placing a device in Chloe that essentially sends electric impulses to the vagus nerve that would help her seizure disorder. After hearing our options and looking at Chloe’s CT scans from January, we decided to pass on all three options for now. Not one of these surgeries will take away her seizures and not one can guarantee clear and efficient effectiveness in her condition so to take away what is left of her sweet little brain or to implant yet another device was not an answer for us. There are lists of medicines that we still have not tried. Yes, there are side effects to consider with medicine and she is already on plenty but we could not go through more surgery at this time. In the end, we decided to put Chloe back on another anti-seizure medicine and are waiting to be cleared to begin a new medicine in the next couple weeks.
Since adding back the anti-seizure medicine that we initially stopped once going on the diet, we have seen positive changes in Chloe. She is calmer and her seizures are not as violent as before. She has even started attending school for 2.5 hours every morning at St. Mary’s Hospital in Bayside in their Early Intervention program. The reality of Chloe’s prognosis is that it will be in flux until she matures. However, the brain damage that she suffered initially has no doubt impeded her development. She suffers from severe neurological damage that has affected her entire body and life. There was high hope in the beginning that her brain would recover some and it has but it is impossible to recover the amount that she lost. Her little body has been through so much and has overcome a lot but the reality that is left is that it’s a different life that we all must adjust to. In speaking with her doctors, we spoke candidly about Chloe’s prognosis and the decisions that we need to be making for present and future. At this stage of Chloe’s recovery, it was with great difficulty that we struggle to accept the fact that Chloe will not be a self-sufficient, independent person. She will need total care. Of course, we hope that she will continue to make strides and rebuild some strength but the damage from the meningitis that attacked her so quickly and violently has left such unknowns in what is to come. She is still the amazing baby she always has been and we will stand by her and help her as much as we can. These past couple months we have struggled to truly and honestly accept what has happened and the reality has hit us hard. There is no more fixing or taking away of the bad that has happened but we try to move forward to support her and make the best decisions that will make her comfortable and let her know that her family and friends love and support her each way.
It has not been easy for us to adjust and accept how our lives have changed and the journey of raising a special needs child. Even after Chloe became ill, we thought we would be in a different place a year and a half later with all the therapy and work we have done but we still struggle and we are exhausted. There is a lot of healing that still needs to be done. There is a lot to learn about Chloe and her needs. There is a lot to teach Olivia who has such dreams of having a baby sister to laugh and play with. There is a lot to accept whether we like it or not. But, there is still a lot to enjoy. We are a strong family and are committed to finding our way. We have found different supports to help us along the way. Most importantly, we found a place (St. Mary’s) for Chloe that has accepted her into their EI two year old program where she can attend school in the mornings while having therapy. Chloe still continues to have therapy at home but this was a nice social option for her and gives me a break in the morning. We hope that their preschool will also be a good option for Chloe when she turns three. St. Mary’s has also approved our request for respite care so that we can admit Chloe for short term stays while we get a break. Hopefully, we will be approved shortly for at home nursing which will also help us to take care of Chloe and ourselves.
Thank you for your support and patience.
Much love,
Michelle, Reth, Olivia and Chloe