{On the ferry headed to the big city}

Yesterday Joel had a follow-up EEG + a clinic appointment to see the neurologist. The EEG went well. The worst part of the whole thing is having to keep him still while the tech places everything on his little head. He usually cries big big tears during that process which breaks my heart & makes me want to cry with him! But after everything is placed on his head I am able to hold him and he ususally falls asleep right away. (We have to keep him awake two hours prior to make sure he will be sleepy for the test. If he moves around during the test they won't be able to get a good reading.)

The neurologist said the EEG showed discharges, but that is an improvement. Dr. R, the neurologist, said the discharges are basically like small sparks in ash after a wild fire. (Does that make sense?) So unfortunately he is still at risk of having more seizures.. but the good news is that the medicine is working! In fact, Joel has been seizure free for almost three months!!!

{Waiting for lunch at J0hnny R0ckets}

We finally have appointments for the tests to check his heart, kidneys, and eyes. Please keep praying!

First Halloween



Our little monkey :)

We stayed home on Halloween and handed out candy to trick-or-treaters. It was fun! Joel liked going to the door to see all the kids dressed up. He also had fun trying to get the candy bowl that I had set up by the front door. ;)

We had Fall photos taken a few weeks back, and were able to get a couple of Joel in his monkey costume. He was so cute!

(Catching Up) A September Day in Seattle

At the beginning of Sept we spent a day in Seattle to celebrate my birthday. We started our day at Pike Place Market. We went on a week day hoping we could avoid large crowds, but no such luck. It was very crowded--mix that with a baby + a huge stroller, and it was little overwhelming at times. Overall we enjoyed it though. My favorite part was all the beautiful flowers for sell. I wanted to buy all of them!!

We headed to the EMP Museum after walking around the market for a while. I mostly wanted to go the museum just to see the Avatar exhibit (yes, I am a nerd like that), but the rest of the museum turned out to be really cool. It's definitely something you should check out if you are ever in Seattle.

Support Group & Denial

It's amazing how God works!

The other night while I was catching up on blogs I somehow ended up reading through the old 'Show Us Your Life' topics at Kelly's Korner. I clicked on the SUYL - Special Needs Families link, and as I was scrolling through I spotted something about TS.

Long story short - thanks to Kelly's Korner/SUYL I found Brittany from Grey is the New Black. (Brittany has a 3 year old son with TS.) And thanks to Brittany I have found a wonderful support group for TS mommies.

. . .

I couldn't wait to share with J about how I found a support group + other information on TS. I was rambling on and on about everything, waiting for some sort of response from him, but he just sat there.. quiet.

He isn't ready to discuss those things just yet. He thinks he might be a tad bit in denial. &Honestly.. I've had moments where I have felt that way too. I guess it's because Joel hasn't had seizures in weeks *PRAISE THE LORD!*, and he seems to be developing right on track. Plus I think it's because we didn't actually see the MRI results with our own eyes. Maybe that would have made it more "real" to us..

Trusting

I'll never forget the first time we went to the children's hospital... As we walked through the area to check-in we passed many sick babies and I had to fight back tears more than once. When we sat down in the waiting area I looked at Jer and said, "coming here makes me realize just how blessed we really are.. I mean, we are only coming here for a cosmetic thing.. and there are so many people here for something worse."

We now know that our baby boy has more than just a cosmetic thing. He has a rare genetic disease that has caused benign tumors to grow on his brain. I could sit around, worry, and question "why our baby, Lord? Why??"  but I'm not.. and I haven't. Instead I'm choosing to trust God.

 ^"Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."  Philippians 4:6-7

God has definitely given me peace. That's the only way I know how to explain it. I've been a worry wart all my life but I haven't worried about this situation once.

I know He is in control.

MRI Results

Joel had an MRI of his brain yesterday afternoon. Everything went well. We couldn't feed him four hours prior to being sedated which was the worst part of the whole thing. I think this picture shows you how Joel felt about that..

The neurologist called this morning and said the MRI showed that Joel does have tuberous sclerosis. It's definitely not the news we wanted, but thankfully there were only a few small lesions on his brain and they are non-malignant. {The irritation from these lesions is what was causing the seizures.}

So.. now the next step is to have more tests to check his other organs (heart, kidneys, eyes) for lesions.


Please continue to pray for our precious baby. Pray the other tests will be normal, and pray that the lesions on his brain won't effect his development/learning as he gets older. Also, please pray for Jer and I. I think the hardest part of all this is that we don't have our support system here.

Pumpkin Patch

On Sunday we spent the day at a local farm with our friends the C's. We walked a corn maze, picked out Joel's first pumpkin, and attempted to take took a couple family photos. We had a great time with our friends, and definitely enjoyed the beautiful autumn weather! (I may or may not be getting spoiled by the PNW weather. I will never admit it though. HAHA) I can't wait to take Joel again next year. :)