Thursday, October 4, 2012

Swallow Study and other updates

Dad and Edmond getting ready for the swallow study
This past Tuesday we took Edmond to a "swallow study" to find out if any of his food is getting in his lungs during the swallowing process, which would lead to the A word... "aspiration." As some of you remember, aspiration is common among children with Lissencephaly as they have difficulty swallowing. Aspiration can become very dangerous for these children. It as an emotional day for us as we watched Edmond aspirate 3 times in 10 minutes while eating and being xrayed. It appears we have been feeding him wrong for an entire year, without anyone telling us! We left with a new set of rules and instructions to prevent aspiration from happening. The new system that we are implementing is much more time consuming as all his liquids have to be thickened to almost like pudding consistency, and we also need to pause and give him an "empty spoon" when feeding him baby food, because of his delayed swallow, the food sits in the back of his throat and the "empty spoon" will prompt him to swallow and catch up. Lastly we have to position him so that his head is not leaning back, but is in total alignment with his chest, this can make feeding time difficult because he tends to clench up his jaw in this position. The good news is that Edmond has never had a lung infection, although we were giving him every reason to with the way we fed him for the past year... so thank you God for that one. But all in all I was pretty discouraged thinking of the all the work and time each feeding is going to take from here on in. One day at a time though... we just need to find a new routine and solutions to thicken his liquids. 

Edmond working on his tactile skills and
vision skills while watching Baby Einstein DVD 
Another major upcoming appointment is an intake assessment with CCS or California Children's Services. They have already denied Edmond twice and I have had to push the system to get them to physically assess Edmond for their program as they have only looked at him on paper and denied him. CCS is really the only program that will be able to assist me in navigating to the correct equipment to help Edmond, such as standing equipment, sitting equipment, wheelchair equipment etc. They mostly work with Cerebral Palsy and Spinabifida children and also provide therapy and supportive services for his lifetime. I'm already asking God to give me the strength to advocate for Edmond during the appointment, I'm not sure if they will accept him, they have been pretty clear that they don't believe Edmond qualifies. It's a little ridiculous if you ask me, but I'm not going to stress about it because I know God sees all this stuff, so I'm giving it to Him to take care of. 

Scary, Erythema Multiforme... benadryl helped.

Last Thursday Edmond woke up with a bad rash all over his body, looking like hives. I took him to the pediatrician that morning and they said it's "erythema multiforme"... a rash that develops when the body if fighting an infection or virus, or it could be caused as a reaction to medication. Here is a picture of part of his body with it. Since he has not had any new medication, I can only assume it was a cold virus that manifested on his body like this. Doctor said other kids might have the virus, but not have any skin issues. We gave him benydryl and they began to clear within minutes. Poor bubba, he was also running an high fever later that day and his seizures did increase at the peak of the fever at 104.0, at that point I threw him in a cold bath and got the fever down. It's just more intense when normal kid stuff happens, but we got through it. 

In the seizure arena, we had no seizures when we started ONFI, after about 3-4 weeks we were seeing 4-5 a day, and now it's about 2-3 a day, very short, less than 2 minutes, and they are non-convulsive, so he stiffens up and tightens as if he is trying to get into a ball position. 

Just wanted to share some news on the rest of us. Recently the Lord spoke to me about some things in my life and in general reminded me that He loves me and sees me, that's seems so simple, but when it's the God who created the heaven and earth and is in charge of everything, it's super comforting... if you want to know more about how I heard God's voice... just ask me, and you know I will sure tell you :)  As a result of this encounter with the Lord, doors opened for me to join a women's bible study at The Bridge (the church we attend), and I was asked to lead worship with my guitar before each study, which I secretly love to lead songs and worship in small group settings, so this has been a good thing for me to be a part of . The study has been extremely encouraging as well, I was even surprised at how much I have enjoyed it. 

Adonis has also felt it on his heart to join a 5 week intensive discipleship Bible study called OSL, Operation Solid Lives. He's been jumping into that this week, I can tell it's a really challenging study so I'm really proud of him for undertaking it with everything we have going on with the kids, but I know it's important for us to be actively serving and learning about who God is during this time... if we don't, we will be clinging to other things to help us cope with our son.... and "all other ground is sinking sand".... so we really need to endeavor to stand on Christ and His word to us as He leads us day by day, sometimes hour by hour. 

Our amazing Eden has been doing so well with potty training this week, she's been ready for some time to start, but mommy wasn't ready to do it until last week. I tried a few times here and there but I got too stressed out so I took a long break from it.  I started with her last Wednesday, she had 3 accidents that day. On Friday she had one accident and went potty on her own without any prompting on her little potty we have for her. ON Saturday she went number 2 on her own without any prompting and by Monday she was taking down her pants on her own and pottying throughout the day... so I'm so proud of her, she's doing so great so quickly, Thank the Lord. I give her jelly beans when she does a good job, so I think she should have a sign "Will potty for jelly beans," because I think she is trying to potty more than she actually should.... but hey, I'm not complaining. I know this may be a little too descriptive for some of you but if you've ever potty trained a kid, you know how good it feels when they finally "get it!" Thanks for reading about us, please continue to pray for us... with tears. We send our love to all of you who pray for Edmond and support our family. You mean so much to us. 

May God keep you in his grip,

Edmond practicing sitting up. 

Mommy and Eden 

The most precious hour of the day... nap time!
Our too handsome boy.

Edmond goes to his Auntie Armida's wedding