Monday, March 31, 2014

On Joel's 3rd birthday (February 3rd) he started attending the county preschool for 3-4 year olds. I was thrilled that we were FINALLY able to get him into a program, and even more thrilled that we could FINALLY start focusing on his progress instead of all the areas of delays. (It feels like a punch in the gut when you have to sit through meeting after meeting and listen to a stranger explain test results that show your child is delayed. I just wanted to scream at them and say "YES I KNOW, NOW JUST HELP HIM!")

The first two days were rough. Joel had a difficult time when I had to drop him off and I had a difficult time leaving him knowing he was upset. Thankfully he adjusted quickly to the new routine and he is doing AWESOME. He has been communicating with us more than ever and it also seems to be helping sensory wise. It's exciting to see how he is growing, and even more exciting to see the smile on his face when he realizes that he learned something new.. like counting, for instance. One day he came home from preschool and counted to 6 all by himself. A few days later he was trying to count to 18!! He now walks around the house counting everything. :-)

I have to admit though, I felt a little bit of mom guilt when he started to progress. I felt like I [obviously] wasn't doing a good enough job at home or else he would already know these things. Right? Wrong. Joel has issues focusing. He still has issues with it at school. So regardless of what I could try at home, it really wouldn't have mattered. He needed the structure of the classroom setting. Being around the other kids definitely helps too.

Summer is approaching quickly and I'm nervous he will lose everything he has learned so far. I'm trying to find programs and activities that will hopefully help during the break from school. One fun thing we will be trying is teeball for 3-4 year olds. I'm not sure he will really learn anything from it but I know he will have fun meeting new friends and running around.  :-)

Second Guessing EVERYTHING

Saturday, March 29, 2014

We have always had issues with Joel not eating but most doctors just take a note of it and move on even though they tell us his medication is known for causing lack of appetite. Since Joel wasn't having seizures they didn't want to rock the boat by switching meds. On one hand I get their reasoning but then again, my child never eats and I'm concerned about his health & weight. It's not fun to go to bed at night worried that your child is hungry because he wouldn't eat anything (once again) all day. Not even snacks.

When we met with the TS neurologist in Cincinnati he agreed that something needed to be done to help. I'm in the process of trying to get Joel into a feeding therapy which he agreed was a good idea, but he also suggested changing meds.  Unfortunately there are no tests that can be done to figure out if the lack of appetite is from the current seizure med or just Joel being super picky so all we can do is switch to something else and see if he starts to eat. 

He also mentioned they don't normally give his current medication to TS patients, especially children, because it can stunt developmental growth and is known for causing appetite loss and break-through seizures like Joel was having around the holidays. (No one ever told us that it could harm Joel's development. Isn't that nice?) 

The med he suggested we try is called  Sabril. It's a medication that has great success in TS kids. The only issue is that it can cause vision damage which is a big concern for me. I know every seizure medication will come with a risk of a scary side effect but how do we know which one is worth the risk? If we decided to try Sabril and Joel ends up with vision damage I would never forgive myself. The whole drive home I went back and forth on whether we should try it or not. I decided to call the clinic the next day and ask for different treatment options. I know Sabril is a very aggressive drug but I don't feel like Joel really needs that at the moment. If he was having seizures multiple times a day I wouldn't hesitate to try it, but he's not. The neurologist even said Joel is doing very well for a TS patient.. So there has to be something else we can try first, right?

The hardest part of parenting Joel is that I'm ALWAYS second guessing EVERYTHING when it comes to his medical. Some days it's just too much for me to deal with and I end up crying my eyes out while Jeremy holds me and tells me everything will be ok. Every parent wants the best for their child.. but imagine if the best for your child comes with scary risks.. That's what I'm dealing with and it's not easy nor fun. I just want to him to have a healthy and happy life. I pray every day that God will give me wisdom and guidance because.. honestly... I have no idea what I'm doing. 

A New Neurologist

Friday, March 28, 2014

The great thing about living in Ohio is that we have access to the best TS doctors in the country. People from all over the country (and world) travel to Cincinnati just so their child with TS can be seen by one of the doctor's at the clinic. Cincinnati is 3 1/2 hours south of us so we decided when we first moved to Ohio that we would use that as a back-up plan if things with our Cleveland neurologist didn't work out. 

Our Cleveland neurologist has been very nice, but we just haven't felt like we were getting the care we needed. For instance, around the holidays we started to see what we thought were break through seizures (Joel would make a face like he had a nasty taste in his mouth, put his hand to his mouth and rub it, and then whine and want to lay down.) and I called several times but I would always get the same response from a nurse--that the doctor just wanted me to keep a seizure diary and he would see us in X amount of months. I also called several times regarding Joel's lack of appetite but again, I would only get calls back from a nurse and she would tell me to just keep monitoring Joel. {One time she actually asked me if I have tried giving Joel finger foods. I flat out asked her, "do you think I would be calling you if I haven't tried to feed him everything under the friggen sun?"} That wasn't ok to me. I felt like he was going to wait for my child to be skin and bones and/or have a seizure that sends us to the ER before he did something about it. So one night I told Jeremy I was done with Cleveland and I was calling the next morning to schedule an appointment with Cincinnati. That was most definitely the best decision I have ever made. 

We met with a TS neurologist in Cincinnati on Wednesday. He listened to every concern and answered every single question we had. We left the appointment thinking I wish we would've come here to begin with!

So for now on we will be contacting Cinci for all things TS. We will keep our Cleveland neurologist for emergencies only. 

March The Hill 2014

Saturday, March 22, 2014

At the beginning of March I once again had the amazing opportunity to attend March The Hill with the TS Alliance in Washington, DC. I went last year and represented the entire Pacific Northwest. (You can read about it here.) This year I represented Ohio and Kentucky with a few other people.

Traveling while pregnant made me nervous but everything went smoothly and I had a great time. It was fun to see friends from last year--friends that I usually only get to communicate with via FB--and exciting to make new friends this year. I hate that Tuberous Sclerosis is the reason we met but I'm thankful to have these people in my life. It gives me a sense of peace in knowing that even if something happened to me and I was no longer able to advocate for Joel, there are still so many amazing people that are willing to be his voice and fight for his cure.

Whenever I come home from these trips I always feel empowered and honored to be able to advocate for Joel and others fighting TSC. There are not enough thank you's in the world that I could give to the TS Alliance for allowing me to attend March The Hill with them.

a few members of the TS Alliance of Ohio with Senator Sherrod Brown 

It's A...

Thursday, March 20, 2014

It's a BOY!!! 

Today we had the anatomy scan for Baby Nelson #2 and afterwards we had a consult with a high risk doctor. My regular OB referred me to the high risk doctor so we can have a little bit of peace of mind regarding the health of this baby. So far everything looks great and the baby is healthy. The high risk doctor wants to do another ultrasound in four weeks and then again in my third trimester just to be safe, though. 

Jeremy and I had genetic testing after we received Joel's results and neither of us have the TSC1 mutation that Joel has.. which is good news.. but since we already had one child with the random mutation, the doctors can't tell us our chances of having another child with TSC is zero. We are still at a low risk. So please continue to pray for baby boy #2. 
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