Tuesday, November 27, 2012

Peekaboo My Love

Peekaboo My Love
By Candace 

Peekaboo my love…
…but you were the surprise,
We had to change our tune
To all our lullabies

We thought that you would walk
We thought that you would sing
We never thought they’d tell us
Not to hope for anything

Not anything?
We thought this could not be
We racked our brains and searched our hearts
And prayed ourselves to sleep

If only a thousand kisses a day would cure you
You’d be even better than our prayers
We always wanted to be special
But not this special…not this rare.

We count our blessings
And count each seizure …one by one
We hold you tightly in our arms
When there’s nothing to be done

Each day I wonder how much longer
Will you be here by my side?
How many kisses can I give you?
How many tears will we cry?

How many years will we have to live,
Being stronger than we ever thought?
How many meds will they give us for you?
How many doctors will we have fought?

I now know how it feels
To love unconditionally
To be proud of my child
Thought they can’t walk, speak, or see

Though you can’t run into my arms
And say, “I love you too…”
One day son, we will take a walk together
Where everything will be new

We won’t need bodies and brains
Or this word… “neurology”
I’ll melt into your hug…
And whisper, “I was your Mommy” 

Tuesday, November 13, 2012

Thanks giving to overflow ... for Edmond.

Hi everyone. Seems like forever since I've written an update, but it's only been a month, I think we've just been so busy it feels like a long time. Edmond had an appointment with his neurologist today to discuss his climbing seizures, he's been having 8-10 a day for about 3 weeks time and usually wakes up to seizures between 4am-6am each day. We are going to up the dose of ONFI that he is currently on and see if it does anything. He is going from 10mg twice a day to 15mg twice a day. THe max dose is 20 mg twice a day for people ages 2-16 year old... so after that dose, we would have to add in another medication. He continues to take Keppra twice daily as well. He has been sleeping so much the last week due to the seizures tiring him out. In the mean time we are just trying to live our lives the best we can each day. 

Edmond continues to eat well, and I've been racking my brain for solutions to thicken his foods that are also nutritious for him. I've been using yogurt, pureed butternut squash, pureed pumpkin, frozen fruit, barley, and avocado in smoothie like drinks for him... adding in formula for vitamins and fat and prune juice for fiber. He was 25lbs today and 32 inches long, so he is growing well. 

Edmond holding onto the red ball with his left hand. 

Edmond started Occupational Therapy on Thursdays at 5pm with California Children Services (CCS). I have to take him to their offices in San Bruno for this. CCS also lent Edmond a bath chair... I included a picture of him in it.  Edmond still receives, vision therapy, developmental therapy, and physical therapy in our home on Tuesday, Wednesday, and Thursday. But he will stop in home physical therapy once a PT Is assigned to him through CCS and we will have to also take him to the CCS site for that once a week in addition to the OT... It's getting really busy! Hopefully Adonis and I can switch off in bringing him to his appointments once I start working. I will be returning to work December 11th, at least that's my plan for now. We are trying to prepare for this major change of pace in our family. I'm a little nervous about time management and everything that needs to be done for Edmond daily, but I really need to return to work at this point, so we just gotta make it work. 

Edmond's bath chair on loan from CCS
until he gets his own.
CCS is also scheduling an appointment with a "vendor" to present us with equipment options, such as an adaptive wheelchair, stander and bath chair for Edmond. I believe we will have to apply for our insurance to pay for these things. It does feel like everything for Edmond is falling into place now so that I would be more able to return to work. Edmond is also getting "institutionally deemed", which means he will qualify for Medi-Cal as a secondary insurance due to his diagnosis, and he also qualifies for respite care hours and hopefully in home nurse care hours, which we are now waiting for a response to our application for these services. 

We continue to have faith that God has a plan for our family that is greater than what we now see. We continue to trust that though it is so painful to endure all of this, we can trust that God has the very best intentions for our lives and our family in mind, although it is a mystery to us as to how this could be God's best, we have faith that it is. 

Please keep us in your prayers, as Eden likes to say when she gets into trouble, and I ask her... "why did you do that?" she says, "because we are weak, but He is strong"... And so it is so true... we are ever so weak, but in our weakness...  HE (meaning Jesus)  is strong... 

Please also pray especially for Adonis' family during this time as they are, even as I write this, having to say goodbye to Grandmother Beatrice Segrove -- as doctors have said she will not make it through until morning. Adonis is in Concord at the hospital there right now saying his goodbyes with his family. 

I cannot think of a better bible passage that encourages me in all of these things than this one... please take a moment to read it... and if you do not understand it... pray that God gives you understanding of it, I am still unlocking the mystery of it myself. 
God richly bless you.  - Candace

2 Corinthians 4:7-18
But we have this treasure in jars of clay 

to show that this all-surpassing power is from God and not from us. 

We are hard pressed on every side, but not crushed; 
perplexed, but not in despair; 
persecuted, but not abandoned; 
struck down, but not destroyed.  

We always carry around in our body the death of Jesus, 
so that the life of Jesus may also be revealed in our body.  
For we who are alive are always being given over to death for Jesus’ sake, 
so that his life may also be revealed in our mortal body. 
So then, death is at work in us, but life is at work in you.

It is written: “I believed; therefore I have spoken.” 
Since we have that same spirit of faith, 
we also believe and therefore speak,
because we know that the one who raised the Lord Jesus from the dead 
will also raise us with Jesus and present us with you to himself. 

All this is for your benefit, 
so that the grace that is reaching more and more people 
may cause thanksgiving to overflow to the glory of God.

Therefore we do not lose heart.
Though outwardly we are wasting away, 
yet inwardly we are being renewed day by day. 
For our light and momentary troubles 
are achieving for us an eternal glory that far outweighs them all.
So we fix our eyes not on what is seen, but on what is unseen,
 since what is seen is temporary, but what is unseen is eternal.

EDMOND is a lion for Halloween :) 
Playing with his mobile and ball. 
Ready for his appearance at Auntie Kelly's Wedding... 

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

Wednesday, September 5, 2012

Welcome to Holland

Welcome to Holland 
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Monday, August 20, 2012

Update for August 20th, less seizures for 8 days!

Edmond has been on Onfi for around a month's time now. He began responding better to it on August 8th, alertness, less seizures. On August 11th we saw no seizures. In the past 9 days since then, we have only observed 3 small seizures. Very good news for us and for Edmond. There are some side effects however with eating, it seems his skills are not as sharp although he still eats and drinks, it is a little difficult to get him to be still and focus during feeding time as he usually does. His sucking skills have changed, he is still sucking but not as well as he was before the Onfi. We are hoping this may be in part due to the cold he had , but we also saw this kind of side effect happen with the previous medication, the topamax. Once his system was used to the topamax, his eating and drinking skills improved back to normal so hopefully this will be the case with the Onfi as well. Edmond is now on Onfi and Keppra. We are all recovering from a nasty cold virus, Edmond seems to be recovered more than we are. He slept for 3 days straight, only awakening to eat and take his meds. I think all the resting helped him recover. He's feeling better today. 
Mommy posing Edmond like a big boy

I was able to recently join a facebook website for Lissencephaly Parents and have had great conversations with other parents around the country and world. It has been a great resource but also very sad and difficult to read. Many parents talk about their kids using G tubes or having worse symptomology and seizures than Edmond does and you feel blessed that he is not going through that, but also fearful that he may have to face other things in the future. People post their joys and their pains, their triumphs and their losses, so it is a very emotional website but also one where we can be open and honest and talk about how lissencephaly has affected our lives, so it has been very helpful and other parents are giving me much needed advice for this journey with Edmond. 

Great Grandma Wong  "Bot Bot" with Edmond
We know that God has His best in store for our family, and that Edmond is presently God's best for us. Jesus is ever present and near to us in this time, I wish I could personally sit down with each one of you and try to explain it, but I pray that God will be near to you in your present situation in the same way so that you will understand the height and depth and fullness of God's love for you in your life too. Sometimes it's easy to feel that God has forgotten us as we struggle daily with Edmond's seizures and with raising two young children and one with special needs. But I have been relying on this verse from Isaiah 40, 

"Why do you complain,  Why do you say,My way is hidden from the Lordmy cause is disregarded by my God”?28 Do you not know?  Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary,and young men stumble and fall;
31 but those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
    they will walk and not be faint.

Monday, July 30, 2012

Medication Transitions and Hope Transitions

The LORD thy God in the midst of thee is mighty... 
and He shall reign in the midst of thee with power and strength and authority...

Edmond's First Family Vacation to Groveland, CA
(near Yosemite)
Found myself singing this song to Edmond this morning. The prayer that was on my heart was simply, "Have Your way Lord." Lately, I find myself completely avoiding praying for Edmond for days at a time. It reminds me of when my father was dying in 2008 of liver cancer. We wanted to pray for him to live and not die and to be healed, but just praying this prayer would open the flood gates of emotions to possible eminent loss of someone who was just too dear to us to lose, that I would actually avoid praying for him, unable to face the wave of emotions that would overtake me.  It's the same with praying for my son, the moment I begin asking for God to have mercy on Edmond, to take the seizures, to restore chromosomes, this huge wave of sorrow, pain, grief, overtakes me and I become too overwhelmed to pray a long drawn out pray, so I simply say, "Lord, have Your way." Sometimes it's even too hard to talk about it with God, especially when I believe He knows all my ways and all the details of everything we are going through with Edmond and with Adonis and I in doing our best to care for him daily. 

I'm reminded of the scripture in Psalm 61:2 
From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I [yes, a rock that is too high for me]. (Amplified) 

Edmond having physical therapy with Alyssa and Bethany
Having faith through the storm daily is not poetic, it's not stoic or an ideal picture of heroic, it is tears, sweat, hope, pain, sorrow, grief, messy, struggle, it's being brutally honest with how mad you are at God, and still telling Him that you love Him anyways at the end of the day, because as I love to remind myself, "If God don't do nothing else, for me, He's already done enough."  And not only has He done enough, He, Himself IS enough. So, we continue to trust in Him, though we don't like it and we don't know where this road is going to lead, but we choose to believe God has given us His very best, although we cannot comprehend how it is best for our son to have this disorder, by faith we accept it and are waiting for God to reveal to us daily His plan for our good. Much easier said than done, believe me! 

Edmond's seizures have increased to 15-20 small episodes lasting 30 seconds daily. This is due to his transition from getting off of Topamax and staring a small dose of ONFI for the last two weeks. He finally starts the full dose tomorrow (Tuesday) feels like we have been waiting forever as we slowly increased it daily. The hope is that the seizures decrease and stop on this new drug ONFI and he also is continuing to take the maximum dose of Keppra that his body mass can handle per day. Both ONFI and Keppra are anti-seizure medications.   It's been hard to watch him in the transition, makes you wish we just kept him on the Topamax, where he was having mild seizures 6-10 a day but sleeping through the night. He hasn't slept good through the night during the initial doses of ONFI and has been having seizures through the night that awaken him. But we have to give it a try and keep taking steps to try to stop the seizures. 
Giants fans fitted out

Light in a messenger’s eyes 
brings joy to the heart, 
and good news gives health to the bones. Proverbs 15:30

We had a substitute therapist for the past few weeks for Edmond who was able to share with us that she had grown up with a child who was diagnosed with Lissencephaly as Edmond is. She shared that the doctor's had given a pretty bleak prognosis for the child, but that the family continued to care and believe for the best for him, and he was able to be potty trained at 10 years old, walks and talks and is now 17 years old. I believe this story inspired hope for Adonis and I where we had lost it. And even though the extent of lissencephaly on the surface of the brain varies from person to person, and Edmond's brain may not be comparable to this child, the good news was very much welcomed. I felt as if a little seed of hope was planted in our hearts and over the next weeks, I felt that the seed grew into strength to continue on.  This has brought me to the ultimate conclusion that a little hope can go a long way, and it is far better for us to hold hope in our hearts to make it through each day, than to live each day too afraid to have hope for Edmond. I think in our human mind we try to protect our hearts by rejecting hope, but hope is the ultimate protection for our hearts and to help us to live each day able to enjoy what we can. So thank God for the good news that was brought to us. 

I'm reminded of another scripture. 
God's word promises that through struggle we will find hope and that hope will not disappoint us.  Romans 5:3-5, 

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Hope will not disapoint us. 
So keep Edmond in your "hopes" and prayers. 
- Candace 

Tuesday, July 10, 2012

Happy 1st Birthday Edmond Daniel!

Edmond turned one years old this past Saturday. Below are pictures of his first birthday party :) We are so very proud of him. Update on things is that he continues to be on two medication for seizures and has continued to have 5-8 seizures daily. We are considering stopping the Topamax and trying a medication called Onfi, but it has only been on the market for 6 months so that's kinda scary and it is for a specific condition called Gestalt Syndrome I think. But I think they just try all kinds of stuff on Edmond to see if anything works since there is not a medication tailored specifically for Lissencephaly because it is so rare. Edmond had to increase the Topamax and has not had the weird side effects that he had when he first started it, so that has been good, only it isn't stopping the seizures. From my understanding I keep being told that some children suffer from many more seizures daily than Edmond does, so I never know what my expectations should be. Right now he continues to grow and eat, and the seizures have not interrupted his ability to eat, but they do limit his active hours because he gets so tired from them that he doesn't want to be awake and play, and that's never good. We will probably have to try out the Onfi and see if it helps him. At this point, since more than 3 medication treatments have failed with Edmond, he is eligible to receive VNS therapy, which is like a pace maker that they surgically insert under his collarbone that sends impulses to a large vein in his neck that is directly connected to the brain and this method has been proven over the last 20 years to reduce seizure activity, I think this would be an option we would turn to if seizures became constant and uncontrollable. There is also the ketogenic diet which is a high fat diet, but I haven't been very interested in this because it doesn't seem that there is a high chance it would really help Edmond. You never know until you try but we haven't seen much results with short term therapies such as the steroids that are supposed to produce longterm results and it is really hard on Edmond those types of short term high risk therapies. Alot to consider.

Thank you to everyone who joined us for Edmond's party, we had a great time connecting with family and friends and showing off the kiddies. I probably did go a wee bit overboard on the theme with treats and decorations, but honestly it was like therapy for me to be able to make the details special and focus on happy party stuff instead of seizures and sad stuff... little bit of an escape for mom, so excuse the excess, but I had fun trying to do homemade train cookies and cake pops etc... 

If you scroll to the bottom there are pics of Edmond doing some of his vision and physical therapy. 

Homemade Thomas Cookies 

Cake by Mitzi Cakes, oreo cookie cake yum! 

My cake pop train display! 

Special Appearance by the Eden Express :) 

Uncle Enzo

Lola and Lolo, couldn't have done this party without all the grandparents' help!
Including Papa Mark, Grandma Carmen and Ama Liz (who took care of the kids for most the party) 
Papa Mark, Grandma Carmen and Edmond D. in his ray bans

The Wonderful Grandma Liz and Auntie Tricia

My lovely guests the Vinculados... minus Isaiah

Beau, Fran, Steve, Keith, and Jesse, my husband's support group :) 

Spooners, we love you guys :) THanks for not being a flake like me. 

Auntie Kelly, the Eden Express, and Bot Bot ( my lovely grandmother Wong) 

Eden and Lyvia try to high jack Arianne's Bike!!! 

The cousins chillin the shade. 

Edmond D. getting his lunch from Auntie Kelly in the shade with his Goo Pa Sandra. 

Caleb schooling everyone on how to bust up the Pinata

Sweet Isaiah and his mommy

Uncle Ellis TCB, taking care of business!!! 

Here are some recent pics of Edmond doing his in home therapy with his physical therapist Alyssa and also pics of him doing his vision exercises with his light box contraption that helps him to focus on objects as he has visual impairment due to his brain condition.