Its just routine

Appointments. So many of them. Lost days of school, work, regular life. Jen is such a trooper through them all. She is out again today and tomorrow, 3 appointments. She has come such a long way tolerating people touching her. Even going back a couple years ago, everytime the doctors would touch her she would rebel making the appointments difficult. Now she doesn't rebel, usually. She sits in the car looking out the window, usually looking very content for the long ride. She waits in the waiting room, will go through x-rays, ultrasounds, lab draws, poking and prodding,
and as long as I am by her side telling her it is all o.k., she is o.k.
I question why the change, it is huge, sometimes we think she has just given into it all, sometimes I just think it is all she knows, we all get use to routine, no matter what it might be. Well, headed out for our routine ride to the hospital.

Sometimes CDKL5 just HITS me hard!!

So as I said in the last post we had a day full of appointments, which of course meant sitting in the waiting rooms, well waiting. We came out of one appointment and the very large waiting room was pretty much full, the only spot to sit and fit Jen's chair was by the chalkboard and the little table full of kids with a hospital volunteer coloring and chatting. I was sad anyway from the appointment we just finished. The volunteer seemed to recruit kids, inviting them to the table. Not a glance, not hello to Jen. So of course now I had something to do while we waited. There were other kids like Jen there, the waiting room is big and we were at a childrens hopsital. She didn't make any contact with them either. I know my daughter is different and yes very disabled. But i guess too scarey to say hello to, I didn't expect her to ask her to color, but acknowledgement, absolutely, it was like she made us invisible. Jen was sitting quietly with me, which is like I said before, very different, for years I sat in waiting rooms trying to quiet her, feed her, anything to quiet her as she has such a loud moaning voice. But this day, she was happy, smiling, quiet looking around. Again I don't know what she is aware of, I only hope she doesn't realize too that no one except for another parent with a boy in a wheelchair, spoke to her in that waiting room, not even the pediatric volunteer. So much has been taken away from Jen with CDKL5, but it is sad society still is so afraid of a person in a wheelchair, so sad.

When did she change?

I have taken Jen to every single medical appointment she has ever had. As I am speaking with the doctors, she "talks" louder than we do, very disrupting, and doctors know if they acknowledge her voice, she will settle a few minutes, we can talk, then repeat the process to get through an appointment. The ones with no patience for it, well they aren't her doctors anymore. We know she is listening and contributing to the conversation actually about her. YES it is aggravating sometimes, but she has a right to speak, and actually there is no way to stop her from "talking" anyway.
Things have changed the last couple of months. We have had a load of appointments this Winter, she has basically been getting quieter each time. This last Friday, we had 2 appointments scheduled, which turned out to be 4 appointments by the time we were done... She was so quiet. The first was a serious appointment, I needed the information and I told her going in, "Jen I need to talk to the doctor, please be patient", see I always tell her the what/where/and who every step of the way. I do believe she gets it. Maybe because appointments are routine for her,and she needs structure, basically the same thing happens physically at most appts. for her,so I guess it is structured, routine. Even the doctor commented on how quiet she was, she smiled, so proud of herself. This appointment was full of stress for me, maybe she knew her "talking" over us was not going to help....just maybe...thanks Jen.

If only you could tell us what is wrong.

Oh Jen, I think this is the hardest part for us. Something is wrong, she is hurting and can't tell us what is hurting her. It started yesterday, a call from school, she has a low grade fever and keeps crying out in pain, big tears, then settles, then starts up again. I picked her up from school again, and couldn't figure out what was wrong. We brought her to the pediatrician, who did a thorough exam on her. He couldn't find anything wrong either. Said to watch her for another day and if not better to bring her to Boston. Today she stayed home, no fever and seems o.k.. She is not crying out in pain. What was it? we will never know, but hopefully whatever it was will not show up again....... If only she could tell us what is wrong. It is so hard to watch her cry and not be able to pinpoint the problem. At least she seems better tonight.

Jen likes ride from Mom instead of the bus

Well last night at 5:25 the school called saying Jen is having more seizures and they are not comfortable putting her on the bus in 5 minutes. She has a 50 minute bus ride and I agreed it wasn't a good mix to let her ride the bus. Ned and I met off the highway on his way home from work and detoured to Jen's school to get her. She had an o.k. night, and went to school this morning. She seemed fine, well by early afternoon, I received another call, more intense seizures one after another. I called the doctor, was on both cell and home phones with them both. If she had more the doctor said break the cycle with the medication. She asked if she was sick at all, "no" I answered. It was decided I was to pick her up from school again and not risk the bus ride. Well, after speaking to the school again, Jen has a fever, not high, but a fever. I made the trip and picked her up, and of course she only has her stroller for the weekend. Another story for another day.
I heard back from the GI doctor today. He wants Jen to be seen by a surgeon before scheduling her g-tube surgery, as she has had one in the past and it might just be more complicated than ususal. Of course, isn't that Jen's life? complicated?

No answer from Doctor brought us to a decision

Well, we went to see Endocrinology as recommended by Neurology and Gastroenterology. The question? Why is Jen not maintaining weight? No answers to be found, again.
So that brings us to a heart wrenching decision - a feeding tube. You see, Jen had a feeding tube in 1999, when she had her surgery. With the surgery, they said she needed one, as she wouldn't be able to completely eat by mouth. Jen proved them all wrong, and a year later, after not using it, they removed it, with letting us know that one day she will need it again. We were o.k. with that, as believing removing it gave her more freedom, and less chance of infections with a foreign object in her body. She had been doing great, eating everything and anything we gave her, her love of food is her biggest passion. So we were able to give her 8 1/2 years without a tube. What an accomplishment! I should be happy it has been so long. Well, I am so sad about this, its all I am thinking about this week, can't get it off my mind. Somehow this just feels like a kick in the head to me. When I think logically, I know she needs it, but it also me makes me feel like I failed her. I know I haven't. I have searched for answers, goodness knows we have been to all the specialists possible, but poor Jen. She will still be able to eat all she wants, she has not lost that ability, thank goodness. It will be just for supplementing her needs.
So the next call is to the GI, to update him about this last appointment, and my discussion with the nutritionist, and I guess schedule a date. ughhh.....

Reality

After talking to another mom online, I decided to add up Jen's seizures. I see the totals each day on the calendar, but never added them up monthly all together. Well, I just went back only 3 months, Jen has had approximately 152 seizures since Nov. 1.. Granted November was a horrible month for her, BUT 152 SEIZURES is just not acceptable. I don't need to look back any further. We see Neurology in 3 weeks, we need to change something....again...but what???

Another trip to the Emergency Room

On January 23rd, Jen had another awful day of seizures. They started on the bus, which is always a scare for me, continued through the morning, but were always outside the criteria for use of the Diastat at school. While I was on the phone with her school at 3:30, she began having more. They were able to break the cycle with the Diastat, but of course the EMT's were called and I met her in the ER once again. Poor Jen, I always wonder what goes through her mind during the seizures, but also with all the medical help, the ambulance ride, the ER doctors. All I can say is thank goodness her school staff is so reliable and the most caring people I know. Someone always goes with her and stays at least until I arrive. I always find someone to travel with me so she will be safe on the way home in the car, but this takes time, and seems like forever just to get to her to give her a hug.. I can't be with her all the time, but when I hear she is being sent to the hospital, I get this sinking feeling, praying she will be o.k. when I arrive. How many seizures can this child take? Once again, we arrived, took her home, and its like it never happened. Thank goodness