Monday, September 23, 2013

Big Brother Edmond

Thinking about this post, we have so much good news to share... 

On August 18, 2013, Edmond became a big brother to our newest family member, baby Grace. It's been a challenge juggling our now three children, but the support of our family and friends during this transition has been a great help to us. Grace is a beautiful and healthy baby and we are so thankful for the blessing of this new baby girl. 


Edmond is growing so big, he looks more like a 4 year old than a 2 year old. We recently received his new wheelchair (see pictures) which they put his nickname "Edmondee" on the seat. Edmond continues to eat well, and has been having 6-7 seizures a day, up from 3-4 a day, but down from 20 a day. Some days he has less, yesterday we didn't see any seizures so that was great. Overall he is pretty alert and has been responsive during his therapy time with cooing, looking around, kicking his legs and waving his arms, some grasping with his hand. We continue to hope that he will improve in his head control. Edmond is in the process of getting fitted for a stander, which is a piece of equipment that will help get him upright and strengthen his legs but baring weight on them occasionally. Edmond has strong legs and arms despite his delays and a stander would be a good form of exercise for him. 

Edmond's new wheels

In July we were approved through Medi-Cal for 40 hours of nursing care for Edmond. The nursing agency sent us a few nurses to interview but either they were not a good fit or they did not want to do the job due to the lifting that is involved. My coworker told me that her daughter's fiance was and LVN and was looking for work. His name is Ryan, and we interviewed and decided to hire him to care for Edmond. The nursing agency certified him through their agency and Ryan began caring for Edmond on July 1st. Ryan has been such a great blessing to us. During the day from 9-5pm, Monday through Friday, Ryan is here to attend to Edmond, feedings, exercise, baths, body temperature, changing diapers, change of clothes, water, g tube needs, and morning medication. It was perfect timing for Ryan to begin, since I had just began maternity leave on July 1st and could train Ryan full time at home in regards to all of Edmond's needs. I return to work in February, but it will be such a relief to have Nurse Ryan caring for Edmond during the day so that we do not have to worry about him while at work. 
Here's nurse Ryan hiving Edmond his bath 
Mr. Ryan and Edmond getting his bath

Some of you may have seen the special on CNN regarding a family has been successfully using CBD or cannabinoids derived from marijuana plants to treat their child's severe epilepsy. After viewing this program we have been looking into this as a possible treatment for Edmond. There is little effect of THC in this treatment and if his seizures responded to it, we could possibly taper him from some of his seizure medications that have unwanted side effects. This could be a costly option for Edmond though since health insurance would not cover this as it is seen as an alternative medication treatment. It is produced in the form of a liquid which we would administer through Edmond's G tube as we do his other medications.  

Cannabidiol (CBD) is one of at least 85 cannabinoids found in cannabis.[2] It is a major constituent of the plant, second to THC, and represents up to 40% in its extracts.[3] Compared with THC, cannabidiol is less psychoactive, and is considered to have a wider scope of medical applications than THC,[4] including to epilepsy,[5] multiple sclerosis spasms,[6] anxiety disorders, Bipolar Disorder,[7] schizophrenia,[8] nausea, convulsion and inflammation, as well as inhibiting cancer cell growth.[9] 

Will update on our process in being able to begin this treatment for Edmond. I am working on getting Edmond a Medical Marijuana Card first. I have given the forms to his neurologist at Lucille Packard, but he is consulting with a another doctor first before signing them. Our next step will be to find a doctor who is already on board with these kind of treatments for children like Edmond. 

In other good news, Edmonds medicine "Onfi" which comes in pill form and we have been crushing and mixing daily, is now in liquid form, so we don't have to crush them up for very much longer, which mean less time and work for medication administration and also more accurate dosing for Edmond, so this was good news for us. Every little bit helps! 

The downstairs apartment is almost done being remodeled and we expect to move by either October or November to our new and more convenient home. Lolo Jaime has been working really hard on getting it ready for us, and it looks really nice with upgraded kitchen and bathroom and floors. I'm working on purging out our stuff and buying storage solutions to fit the five of us in this new space. It's the same size as our current apartment but will be on the ground floor so it's easier access for Edmond and our entire family, plus Eden likes to play outside and we can better supervise her once we are down there as well. 

Edmond doing his Physical Therapy with his PT, Naomi  and Occupational Therapist, Alison 

Thank you to everyone who continues to remember us in prayer. We are holding on to faith and asking for miracles for Edmond daily. Jesus said, "This is My commandment that you love one another, that your joy may be full." I'm not going to lie, we are often full of worries and doubts, fears and stress, but we are full of love over here and therefore, somehow we are full of joy too. 

God bless you in your own journey of life today, that your joy may be full too. 



3 comments:

Jim Oesterwind said...

Prayed for you all this morning. You don't know me, but a friend posted your story. I know this must be an incredible challenge, but a great opportunity to draw close to our Lord and Savior ...to draw upon His sustaining grace.

Psalm 84.11

Purple Butterfly said...

You all are amazing and I am so glad to read of the blessings that God has provided for your family. <3

Greg Green said...

Hi Candace - I have a friend whose daughter is also diagnosed with Lissencephaly, and has refractive seizures. Were you able to get the cannabidiol oil for Edmond, or were you able to find anything that supports whether the oil helps seizures with this diagnosis? I would really be interested in finding out whatever update you have.