The last two months have been a whirlwind and emotional rollercoaster. They have been some of the most difficult of this journey. It has been a reminder in the importance of living life to the fullest every single day, the blessings of what amazing friends we have and what an amazing community we are a part of, and of the power of prayer. January 2nd marked Emma’s seven-year diagnosis anniversary. It is crazy to think about all she has endured over the last seven years on this journey, and yet she continues to inspire us with her strength and perseverance.
It feels as if so much has happened in the last two months, that I don’t even know where to start or how to summarize it. As I have been contemplating what to write there are two themes that I keep coming back to as a I process through everything that has happened. Those two themes are: Strength and Gratitude.
The time in the PICU at UNMC and at Children’s trying to make a plan for Emma was so incredibly hard and overwhelming. I’m not quite sure how we made it through, but I am sure it was the many prayers and outpouring of love that somehow got us through. Every step of this journey Emma has continued to show us what true strength is. Even on days where all she could do was blink answers to us or mumble “mom” or “dad” she somehow found the strength to push on. She is truly amazing!
We discharged from Children’s Hospital about 5 days before Christmas and we decided that it was extremely important to us to have her home with our family for such an important time of year. Bringing her home made for lots of learning in how to care for her now, and made for lots of stressful moments for mom and dad as we navigated all sorts of new things to manage. When we brought Emma home she had very little head control or trunk control, couldn’t move any of her arms or legs purposefully, could only see changes in light, and required all of her nutrition be through her NG tube.
It was overwhelming and heartbreaking to see where she was, yet were incredibly thankful to be bringing her home. Christmas certainly looked different this year, but we were all here together and the holidays were filled with lots of love and family. We can never thank all of the special helpers who made Christmas happen by doing most of our Christmas shopping, wrapping our gifts and helping with food. We were in no place emotionally to be able to get Christmas together, but because of all of you we had an amazing Christmas together filled with love, laughter and time together.
Over the last seven years Emma has shown us time and time again what a strong girl she is and how perseverant she is. When we brought her home this time, we really didn’t know what to expect as far as recovery because of the extent damage from the stroke, the brain bleed, and all of the seizure and neuro-storming issues she was dealing with. To be completely honest there were multiple departments that pushed for Emma to come home on hospice care. We were shocked to hear that even though there is such a thing as Pediatric Hospice, which allows continued care for disease if the family prefers, that the company we had available to us only used the Adult Hospice format. Frustrating doesn’t even begin to describe what those emotions were like. When we went home without hospice care she couldn’t do anything but lay in her beanbag and talk to us. I can’t explain how difficult it is to watch your baby struggle like that. Emma though has an inner strength and drive that is truly amazing that allowed her to find her way through yet another battle. Slowly day-by-day she started to make small improvements.
It started with her starting to move her right leg and right arm more purposefully. Each day we would see little steps in the right direction. Slowly but surely those little steps have become big improvements in a fairly short time. Emma has regained good head control and her trunk control is so much better. She is sitting by herself for very short periods of time without support. She is moving both of her legs more, and she is able to purposefully move her right arm. She started by just lifting it to itch her nose, but now she moves it much more and is trying to do things with it. A few weeks ago she started being able to squeeze our fingers with her right hand and now she is starting to be able to grasp and pick up some bigger objects. She was able to pick up and feed herself little mini muffins today. Emma has also been eating much better. She is doing a great job of eating solid foods safely. Thin liquids are still a little harder, but are getting better. She continues to need the NG tube to supplement what she eats orally, but mostly to get her liter and a half of fluids daily. Emma has even been up and standing and taking a few steps in her walker this week in therapy. We are absolutely mind blown by the progress she has made in the last few weeks!
The most exciting news though, is that Emma is starting to see again! It started with her being able to see colors, and tell us what color we were wearing. Over the last 2-3 weeks she has gone from seeing different colors to being able to see pretty well. She is seeing well enough that she is able to read some sight words and even read a short book to her teacher last week. We are beyond thankful and truly feel that God answered our prayers in helping her to see again. We took her to the eye doctor last week and he was absolutely amazed at the change in her vision. When we saw him in December he felt it was unlikely she would see again, mostly because the color of her optic nerve was becoming pale indicating it wasn’t getting the blood flow it needed. At her appointment her optic nerve was pink (normal). They don’t know why, but wonder if some of the pressure has reduced or if perhaps the pressure shifted allowing blood flow to the optic nerve again. The eye doctor said at the end of our appointment that sometimes the power of prayer is more powerful than the power of medicine. I think this is so very true about our little fighter! We are beyond thankful that she is seeing again. Your prayers are certainly part of how she has gotten here.
Emma did give us a pretty good scare about two weeks ago. We woke up at 2:00 am and could hear her moaning. When we went in her room, she was having a fairly considerable seizure. About 8 minutes in we gave her the emergency medicine we have at home, but it didn’t work right away. We ended up having to call 911. The seizure lasted for a total of about 30 minutes, which was so scary as a parent. Luckily it stopped shortly after the EMTs got here. This of course earned Emma another short stay at Children’s for observation. We did a rapid MRI while we were there. The good news is the doctors don’t feel that the tumor has grown at this point. It also didn’t look like the bleeding in the tumor had resolved much yet either. They did think that the blood had slightly shifted, which may have caused Emma’s brain to be upset and cause the seizure. We have adjusted seizure meds and have new emergency meds that will hopefully work faster if we need them. Emma has luckily not needed them since coming home again.
The plan as of now is to look seriously at another inpatient stay at Madonna to continue to work on improving Emma’s skills. They are currently full, but are hoping to have a bed for her in the next few weeks. We will continue to enjoy being home together and keep working hard on her therapy here at home until then!
All of this progress is truly amazing and we are so very thankful for it. The doctors said she would do one of three things: either not improve at all and continue to have strokes and seizures, become more stable, but not regain much function, or regain some function. We are thankful that right now she seems to be on the path of regaining skills. We do also know though that while she is improving, she still isn’t strong enough for treatment and because of the brain bleed can’t do treatment right now. We have to continue to pray that the tumor behaves because if it grows it could cause more strokes, seizures, or even increase with other issues. Emma is certainly making progress, but we also have to pray that the tumor remains stable enough for her to continue to heal.
The last month of being home has once again shown us what a fighter Emma is. The doctors weren’t sure what to expect, but she has certainly pleasantly surprised many of them with her progress. We are amazed daily by her strength and perseverance. Even when things are hard, she continues to push and fight. Getting her vision back has made her so much happier. Through all of this though, she has hardly complained. She is just amazing! I can’t put into words how proud I am of her fighting spirit and loving personality. The last two months have also given us so much to be thankful for. We are filled with gratitude to God for leading Emma on a path of recovery. We are so thankful for all of the little things we were scared we wouldn’t see or hear again. We are grateful to hear Emma say our names, to hear her giggle, to talk with her, and to hear her say I love you. These are all things we prayed we would hear again as Emma laid in the PICU, and thankfully those prayers were answered.
We are also forever grateful to Pediatric Therapy Center, where Emma has gone to therapy for 7 years now. One of the pieces we were struggling to figure out when we brought her home was therapy service. PTC has been on this journey with us every step of the way for seven years, and has gone above and beyond in making sure we could get services for Emma and has worked so incredibly hard in creating a plan for to help her regain skills and strength. We are forever grateful to them for all they do for Emma! She would not be making the progress she is if it weren’t for them.
The gratitude we have does not end with our thankfulness for Emma’s improvements though. We could NOT have made it through the last two months with out our amazing support system, our community and the prayers of all of you. No one would ever wish to be on this journey, but I can tell you that we feel so blessed! When we were struggling the most, we have been lifted up by so many. There will never be enough words to thank everyone for everything that has been done for us. We are overwhelmed and thankful beyond words for the support of our school communities (Carriage Hill, PLSHS, Walnut Creek and all of the PLCS district), our neighborhood, the community we live in, and all of you that follow Emma’s story near and far. I am so far behind on thank you notes that I’m sure I will never get them all done for everyone, so to everyone who has helped in some way, come to the benefit or prayed for Emma, know how much we appreciate it and how thankful we are to you! We have truly seen what the power of prayer can do! Thank you!