Tuesday, September 11, 2012

Summertime 2012 & Seton is 18 months old

Well, it has been a while! We have been fairly busy with Seton and work this summer. Summertime did not slow down for us at all. We are still battling Seton’s seizures, and trying to get his medications right for him.

Seton was admitted to the hospital the day after Father’s Day for seizures. These seizures were more severe than those he has had in the past year. We decided it was best to head to the ER, since he was turning blue and had stopped breathing during both seizures he had the first day. Dr. Habersang was out of town so we had an on call doctor. It is hard not to have your regular doctor that knows Seton, and knows how we like to work through problems. We were in the hospital for 3 days and Seton was treated for everything except his seizures. He spiked a fever one time and they did a chest x-ray to check for pneumonia, which he did not have. The one fever that he spiked was inaccurate, the xray showed a small amount of fluid in his lungs which was taken care of with the oxygen and increased breathing treatments. Then after 2 days of IV fluids it caused his to have low potassium levels so we had to stay another day to get his potassium levels back up with and IV potassium bolous. Finally, we were able to go home. 

The next few weeks were uneventful in the Oliver House. We tried to get Seton back on a non-hospital schedule, started working on his eating by mouth again. He seems to have lost almost all swallowing abilities with his last set of seizures, actually he lost almost all progress he had been making with everything…eating, sitting up, holding his head up, and all other intentional movements.

Zane and I took Seton on a quick weekend trip to Ruidoso, NM. It was our first trip for just the 3 of us. Seton did great while we were there, other than trying to cut a few teeth. It was great to get away, just the 3 of us.   

Seton finally outgrew his carrier car seat so he got a “big boy racing” car seat (that’s what I like call it), because it is made by Recaro.

This summer we took a Family Vacation to Florida. We went with my parents, my sister’s family, my cousin’s family, and my aunt and uncle (16 people in all). We rented a condo on the beach. We sat on the beach, swam in the ocean and floated in the pool, and ate and ate and ate all week.  It was fabulous! I think Seton loves the ocean… like his parents. Here are a few pictures from our trip.
Sitting by the pool

In the Ocean

Our Family

Chillin' in the sand

Since we have been back we have been battling Seton’s seizures and our own illnesses. Seton has had a set of seizures almost every week until lately. These were quick episodes where he stopped breathing for about 20-30 seconds, his eyes become unaware, and his lips turn blue. Dr. Habersang said they are breakthrough seizures that are caused by his thresholds being raised due to his teething. He is cutting quite a few teeth right now. He has 7 that are in completely, but he has 6-8 that are just poking through or almost cutting his gums. He has been such a big boy through this painful process, he has not been as fussy with most of these teeth but you can tell he is uncomfortable. The seizures do seem to be slowing down, but as soon as we make any changes in his medicines they start right back up. So for now we are working on getting his seizure medicines lined out where he does not have any seizures or episodes. He is currently on 3 different medications just for seizures and a 4th medicine when he has breakthroughs. We seem to be on the right track because his total body jerking movements have decreased, his overall muscle tone is good. He is also increasing his intentional movements, like pulling his knees towards his chest, bringing his hand directly to his mouth, looking around when lying or in a supported seated position, and rolling to his back or tummy from his side. He even tried to get up on his knees and crawl, but his arms would not cooperate. Seton has been playing with his vocal cords and is learning to make several different noises& sounds or grunts & growls. Even with all his setbacks we continue to see progress and WE KNOW THAT GOD IS WORKING MIRACLES IN HIS BODY.  

He turned 18 months old on Sunday! Sorry he did not want to open his eyes for any of the pictures. 

He is such a big boy now! 

He has so much hair, it is getting longer, thicker and he has yet to have his first hair cut. We are looking for a way to style his hair.
I played with his hair one day and he had many different styles, here are a few. 
Straight up

His normal style - Messy

It is very curly when it is wet.  This is his smile, I think.
Just to show its length... it is usually curled up in the back and is right at his collar. 

We have been unplugged this summer from the blog and writing updates, and for that I am sorry. We are still learning how care for Seton, be a married couple with a special needs child, and LIVE every day. God has truly blessed us with Seton, and taught us so much. We are thankful for all of our readers that pray for Seton and our family. We are thankful for all God has done in our life and given us all the people that help us take care of Seton each week.
We still believe that Seton will be fully healed, someday. We thank God for Seton’s healing everyday, not just the progress he has made but the progress God promised us he will make.

Jeremiah 33:6
6 “‘Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security. (NIV)