Cassi has been growing by leaps and bounds. She amazes us all with her tenacity and good spirits. She can roll over and push herself to her knees. She has several new pieces of equipment for her to use now. Her most prized tool is her walker. It is called a “gait-trainer” because it is so much more than a walker. Her upper body and neck is supported by many straps and cushions to hold her upright. But, her legs and feet are free to propel her all over the place. When she first got it, she didn’t know how to make it work so she did what Val called, “Flintstone-feet”. Her little legs went a mile a minute but she got no where.
Now she knows how and where to go and she is delighted! She screams and giggles as she tears around the house. She walks along a table or shelf with her arm raised high. Anything she can grab from the table or shelf goes onto the floor to her very noisy exclamations. The other thing she likes to do is find Mommy, wherever Mommy may be. Then, Cassi just stops and waits for Mommy to touch her or talk to her.
This was our first Easter celebration that I know she enjoyed. Val and Tim brought the gait-trainer along so she could zip all around the large room. Someone had to walk with her because she kept getting caught in the chairs and tables that were set up for our celebration. The building has a ramp in it that leads from the eating area to the kitchen. It is not a very steep ramp but Cassi thought it was perfect! Someone at the top would set her in the right direction and, off she would go, tearing down the ramp to whomever was catching her at the bottom! It was a game she never wanted to stop doing.
They have finally found a formula that is working with her digestive system and for once, she is off the “failure to thrive” charts. She is still fed by gastric-tube because she doesn’t have the muscle tone to be able to swallow any foods. It’s a very complicated procedure but Val and Tim handle it routinely. It has become a part of their lives.
Another tool that Cassi has is something to help her communicate. She has several colorful buttons that can be programmed to say things. The day that Val shared the video with us, Cassi was working so hard to push the button that said, “I love Delilah”. After several attempts that resulted in “I love Mommy” or “I love Duncan (the cat)”, it became clear that she was playing games with us and pushing the other buttons purposely instead of “I love Delilah” – just for fun. In the future, as she becomes more able to understand communication, more buttons and words will be added so she can actually “talk” to us. She did bring tears to Val’s eyes once when she immediately pushed “I love Mommy” as soon as Val put the communicator in front of her. It was not an accident.
Cassi has not been seizure free since her first birthday and this is the problem that holds her back. Seizures, and she has so five different kinds, attack her brain and set her back from any advances she has made in a certain area. She was on THREE different seizure medicines and had the maximum dose, that is safe for her age, from each one. Val, Tim and her neurologists have came to the conclusion that something must be done to get them under control and stop the major ones.
So, the decision was made to slowly start weaning her off the seizure meds, one at a time. The reasoning for this was to allow her brain to have all the seizures it would if there were no meds to stop them. The doctors would wire her head and learn what kind were the most prevalent and where they occurred in the brain. The weaning started at home and continued at Children’s Hospital of Philadelphia (CHOP). The tremors started immediately and were nearly nonstop as her parents keeping vigilant for anything more drastic. I offered to go along to CHOP to help with Delilah. Val and Tim wanted her to come along to see where her little sister and Mom were going to be living for the next week.
On a nice Sunday afternoon, we left our home for Philadelphia. Val drove her own car with all the equipment, supplies and clothes for both of them for at least five days. Tim, Delilah and I followed in the van. It had been a very long time since Tim and I had a chance for an uninterrupted talk and I reveled in it. He told me all about the changes in his work and his plans for the four season room they want to build for Cassi. Make-A-Wish had selected Cassi as a recipient and they agreed to provide a hot tub for her. Being in warm water loosens her muscles and relaxes her. Her physical therapy could expand with the use of a hot tub. A four season room would allow everyone to enjoy the hot tub year round.
It took a bit of time to get Cassi admitted and placed in a room. A troupe of doctors and specialists came into the room and asked myriads of questions. Some of them talked to Tim and some talked to Val. I entertained Delilah by eating one of her pretzel fish and acting like it was a terrible thing. I told her I owed her for the one I stole and she said it would cost me a “million, trillion dollars”. When it was time for Cassi to get hooked up to all the electrodes on her head and receive her first EEG at CHOP for this observation, I took Delilah to the cafeteria for dinner. The minute we walked into the cafeteria, she spied the ice cream freezer. It took a bit of coaxing to get her to eat anything else but she did choose an apple. I picked a tuna fish sandwich.
Delilah got to pick the table to eat our dinner and she chose one that was next to the windows that faced the outside garden. We both wished aloud that we could eat out there but the temperature was in the thirties that day. Delilah did pretty good eating her apple despite the fact that she is missing two teeth on the top and two teeth on the bottom. My tuna fish was not very good so I didn’t eat it. I told her we were even on the eating department so we could get our ice creams.
When we returned to the room, Val and Tim traveled to the cars to unload all the equipment, clothes and supplies they brought along. Then, sadly it was time to go. My heart broke as I watched my son barely keep his composure as he kissed his younger daughter goodbye. Delilah was reluctant to leave her mom and Tim and I had to go out into the hall to give them some time alone. Our trip home was full of more talking and we got on the subject of books. Tim has begun reading memoirs of people who have disabilities such as Cassi’s or Aspergers’, which Jared has. This delighted this old retired librarianto talk about books. One of the books he was currently reading was a fiction novel entitled, Out of My Mind by Sharon Draper. It is an excellent story of a girl with cerebral palsy who is non-verbal like Cassi. It is told from the point of view of the girl who is very intelligent but can’t show it due to inability to communicate. When she receives a communicator similar to Cassi’s, her world opens up. I had read it and loved it. I told him about another book to put on his list which is written by Cynthia Lord and the title is Rules. What a wonderful conversation for us to have!
Each day, Val and I FaceTimed each other for an hour in the afternoon. I could see Cassi with her head wrapped in gauze with a long stocking-type cap holding all the wires. Those wires were attached to the wall of Cassi’s room. She could easily walk in her gait-trainer but could not go very far.She knew it because every time the door to her hospital room was open, she headed right for it. She did not like the electrodes stuck all over her head and kept trying to scratch at them. Val would tell her “no” and Cassi would shake her head no as her hand moved up to her head. All the time, she would giggle.
The time in the hospital was difficult for Val. She slept on a pull-out sofa and ate from some of the supplies she brought in a cooler. Cassi could not be left alone for even a minute so Val could not leave the room or take a shower unless someone came in the room to relieve her. When she went to the bathroom, she took Cassi with her. Rachel sent Cassi a big red balloon and Val, some food vouchers. With these vouchers, Val could order food from the cafeteria and it would be delivered to her room.
One afternoon, while we were on FaceTime together, I helped her set up her tablet so she could borrow ebooks from the public libraries. She and I also talked about books. Val loves the dystopian series novels such as the Divergent series and I Am Four series. I told her about the Fifth Wave series which she had never heard about. Unfortunately, she won’t have much time to read with the way her life leads her. But, at least she has the ability to borrow books when she can.
Tim went about his week as usual but he couldn’t wait until that Wednesday to go see his girls. He had taken the entire day off to head to Philadelphia. But, we had eleven inches of snow – in the end of March! He was stuck at home and very disappointed. At least, he, Delilah and Jared had a nice snow day at home. Finally, on Friday, he drove to Philadelphia to see his wife and child and hopefully, bring them home. The look on Cassi’s face when Tim held her after all this time was priceless. I’m so glad Val got a photo.
The hardest part was the waiting game. As Cassi was weaned from more and more of the seizure meds, we all worried. Would she be okay with the seizures? Would she have any really bad ones that could badly damage her brain and/or endanger her life? Would the doctors see what they needed to make a decision for the future? As the days went on, Cassi became more and more irritable. Val figured out that the little girl was having headaches, either from withdrawal or the absence of the meds. It was tough on both of them. By Friday, the doctors had seen all they hoped to see and Cassi never had a bad seizure (Val calls one of them, “the big one”). As they ventured out of the hospital room that was “home” for five days, Val put Cassi in her gait trainer so she could finally leave the room on her own as she kept trying to do all week. Notice the boo-boo’s left by the electrodes…
From Val: “We are also scheduled for a repeat MRI and MEG scan on June 22nd. This will help determine exactly where her seizures are coming from. It will also show us what her brain has been doing the last 2.5 years since her first MRI at 5 months. (ME: this was the only MRI she has had). The doctor did state because of her bilateral bleeds she is not the ideal candidate for surgery because there is no definitive outcome. This means that any surgery might not work because the seizures just might occur in different place. However, since they found all the seizures, while we were being monitored, came from the left side this does give her a possibility of being seizure free with surgery. We are continuing the testing to determine her eligibility. Our girl is now 26lbs, 36inches and growing like a weed.
We got a call this week that she was approved for 4 days/week LIU preschool this Fall. She will attend the Learning Center with her nurse. She will ride a bus to school every day! She will have teachers, therapists and new friends to meet. She will receive speech, vision, physical and occupational therapies. We will continue with outpatient therapy for PT and speech consult and come up with a solution that, hopefully, will give Cassi a better life. It may be surgery of some kind. I pray that God leads the doctors to what will help Cassi the best.“
- Cassi is so resilient. No matter what is thrown at her, no matter how bad she feels, she eventually overcomes it and becomes that giggly girl who loves to tease.
- When Cassi was free of all seizure meds, she was a different girl. Val and Tim saw a child that did not have to struggle to get a toy to work or to push buttons on her communicator. They saw just Cassidy Renee Why – and it nearly broke their hearts. Because it is highly unlikely that she will ever be seizure free so she will always require medication that will dull her brain and hide Cassi deep inside. It breaks my heart, too.
- I can still be a librarian! What fun to discuss books with Tim and then, Val! I wrote down the titles of the books that Tim has read and I plan to read them, too, so we will have more to talk about.