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. 



Saturday, July 20, 2013

Just a hard day for mom

We are now 2 years into the life of a Liss family... It's hard to describe the daily torture that comes with it. Folks have tried to console us and tell us that we just have to adjust to our "new normal"... but how can torture ever feel normal? From what I can gage, some Liss kids have it worse than Edmond and some have it better.... My son Edmond, does absolutely nothing all day but lay there and stare in space, have a few seizures a day and then passes out for long spans of time. We have every service and therapy in place. We interact with him but with pretty much zero reaction from him. There are such minimal improvements or signs of progress. What kind of life is this for Edmond to live? I feel so sad today for him, I feel so tortured when he is unable to do anything, and so tortured when he has a seizure... today one single tear shed from his eye after his seizure. I cried. I know I am focusing on the bad today... If I were focusing on the good, I'd say, he has some good skills in swallowing if we put the food in his mouth for him, pureed only though. I'd say that I'm glad I was able to meet my little Edmond and didn't lose him in the womb without any answers as to why he didn't make it, it's probably amazing that our kids make it into the world missing their chromosomes. If I were focusing on the good, I'd say that he has the most kissable cheeks and face imaginable and he's the cuddliest boy in the world. This "pros and cons" speech about Edmond is pretty much a daily conversation I have with myself... not sure if that's even normal for a special needs parent, not sure if it will get better in time? How would I ever get better if my son doesn't? Will I really be able to cope with it better as time goes on? Will I be able to be strong if we have to say goodbye to him? It's unfathomable to think of not having him with us. I once dreamed of having a family of all sons... just wanted boys for some reason... Now I have a 3 year old daughter (who is my little amazing girl) and Edmond, and another daughter on the way... and I will love my girls, but I just want to burst into tears every time someone announces they are having a boy. I look at Edmond and I"m so heartbroken every minute for him, for me, for my husband, for his sisters, for this shadow of Lissencephaly that covers and reaches into every part of our lives and that somehow even taints every moment of joy that we happen upon. I dread the questions my girls will ask me as they grow up and wonder why Edmond can't do what other children do. I know I will answer them, and then probably fall apart later that evening over it. It's overwhelming to think of what we have to face daily, monthly, yearly, and still function as a responsible parent or spouse to our other family members, still work and interact with all the other stressors that come with life in general... I feel myself aging rapidly from this experience and there is no light that I can see at the end of any tunnel I can imagine.

Monday, June 3, 2013

1 in 100, 000

There are many statistics on Lissencephaly, but I did come across an article that stated it was 1 in 100,000 kids were affected.. and I always say that "we did always want to be special, but not this special." So as I go through each week, I often experience waves of shock still, that my son has a rare disease, and why us?, and so forth and so one... the same tape just replays, especially on hard days for Edmond.

I recently received a publication from my old alma mater, Vanguard University, that features different alumni and articles and updates on current and graduated students. There was a story in there on a little girl named, "Mercy," a daughter of two Vanguard graduates, who was diagnosed with another rare brain condition and in fact the statistic on her was 1 in 10 million.... I had to read that one twice... 1 in 10 million? Good grief I thought, that's super rare. She also has severe complications such as Edmond, but it appears she is able to walk and communicate with some limitations though. What struck a cord with me as I read their story, was the father's statement about thinking, "this is so unfair", and his struggle with his faith and what was happening to their daughter, thoughts that every parent would go through under these circumstances. But then the father stated that he realized that God's grace is also not fair, and yet God gives it to us freely. This is something that resonates with me, and that I will be chewing on for a good while still to come. As a parent who endures the daily battle of a child with special needs that Edmond has, you are looking for a way to escape the "it's not fair" tape that plays over an over again and for a way to make sense of things and finally  put that tape to rest. Thinking about God's grace... it just may be the glimmer that I'm looking for.

Theres a well known scripture, Jeremiah 29:11, that his frequently quoted and I have to admit, I get annoyed with how nice and sweet it sounds, when life seems to be dealing out bitter winds and scary waves. But on Sunday, as the preacher asked us to turn to it, the entire passage begin to jump off the page to me. If you look at the verses before and after this sweet little nices verse of 29:11, you find the whole picture of what was going on. God is speaking to his people who have been and are presently in exile, captivity, and in a very dark place. He is speaking to them in a desparate place, where fear and heartbreak are presumably the prominent features of their hearts... a place where they feel banished by their God.


Let's look at it... Jeremiah 29:10-14

10 This is what the Lord says: “When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place. 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.[b] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

There are times in our lives, when it seems like God is out to harm us, when He has allowed so much pain and difficulty in our lives that it seems that He cannot be a God who is "for us." I struggle with all my heart everyday as I watch Edmond, to still continue to trust God, to believe He has my best in mind and that he knows my name and Edmond's name and has a plan to give my family a hope and a future, but it's not easy.

I'm glad to have read the story of "Mercy" and to hear how her father is making peace with what is happening with her. Understanding grace, may be the key to it all in the end.  

Thursday, May 9, 2013

Faith in the Fish Bowl of a Suffering Child

Faith in the Fish Bowl of a Suffering Child 
By Candace Segrove 

Few people can understand 
The constant torture of the soul 
That is endured by a parent 
Watching, waiting, watching, waiting 
Your child suffering into the night 
Fearing the morning light 
Or what a new horizon may bring 
The ways you learn to overcome
The daily gnawing of your heart
Of unanswered questions
And incurable disease and disorder
How can faith begin to compensate
For the courage you have to muster
Just to hold your baby
perhaps a moment longer
And hold back your tears,
so you can live
And just function
And give all your love to this child
Wonderful child
To pray... yet, another prayer
Wave upon waves of unending prayers...
To feed them
and clean them
And serve them each hour
And still believe in Gods power
To intervene in miraculous ways
That is the type of faith that is tried by fire and sticks like glue
Not many people will understand
Nor be able to do
What you do ... What we do
But i still believe, if I reach deep down
God must see every sacrifice
and each tear in the night?
Each time that I cry?
Each question and each "why"
And each time I choose to believe
In a God that is present and loving and wise
Who still loves us when it seems
He has turned aside
From looking at us
Kept His favor from us
Finding it harder and harder to trust
Swimming in pain
no escaping the routine
The cycle of heartbreak and exhaustion that each day brings
And...
The innocence of a face that glows everywhere it goes
As if there is something beyond what we know
I'm searching for treasure
as each shipwrecked day starts
But I'm finding that Hope
is as rare as gold in these parts

the pressure cooker of life

Daily life has been feeling like a pressure cooker for us... there's so much going on it's hard to even know where to begin, I suppose that's partly why I've been avoiding posting an update.. just seems like too much to write about. The 5th anniversary of Grandpa Edmond's death was in March, as well as Adonis' grandmother passed away to be with the Lord at the end of this March. This has been a big adjustment for the whole family in grieving the loss of their mother and grandmother and great grandmother... Uncle Bob has had to move out of the apartment complex, but lives close and still comes to watch Edmond during the day at our apartment for now. He is a true blessing for us in being faithful to help us with Edmond as well as Grandma Vernie and Grandma Liz and the rest of our family.

 I think I will do some bullet points for the rest of this update.


  • On a good note, Edmond was deemed eligible for Medi-Cal and was approved for 40 hours of nursing care a week. On the flip side, the first nurse was elderly and appeared a little disabled herself in getting around, so I couldn't hire her for Edmond. The 2nd and 3rd nurse I interviewed were great but then they both didn't want to take Edmond's case, one didn't give a reason and the other said it was too much lifting. So that was discouraging. We are still having to interview other nurses. 
  • Another option I am exploring is having Uncle Bob and Grandma Liz care for Edmond and be paid by In Home Support Services and just completely forego the nursing care. I just had an intake interview with IHSS and will be hearing from a social worker to assess Edmond within 8 weeks time frame. This may be a better fit for all of us, especially since I'm having less faith in the nursing system, but if we ever needed to reinstate nurses or use them part-time we could. And no one could love Edmond more than our family does, so we would know he is getting the best care... as well as the fact that our relative can also keep an eye on our other kids and a nurse is not able to do so. 
  • Edmond is doing really well with his GTube. We switched to overnight formula feeds, which has made feeding a great deal easier on us since we just run the pump slowly over 10 hours at night. In the morning Edmond has already had half of his calories he needs for the day and we can easily give him flush feeds of 4 oz of water at a time through his GTube and feed him pureed. He has a better appetite during the day now and is more alert too, so it's a good fit for him and for us.
  • Seizure activity has not climbed but he is still at 3-5 daily and some days seizure free. They are very short, about a minute or less and he will rest for a while or sleep and then be awake again, so they are not interrupting the whole day. We have had trouble this month getting the feeding bags and formula refill through our insurance and I"m not sure what the hold up is, but it's been anxiety producing since we rely on these supplies to keep Edmond nourished. THey sent me a few feeding bags to tie us over until everything get's authorized. It's alot of coordinating on a weekly basis for things. 
  • As of June 1, Adonis health insurance plan premium is going to quadruple to $460 a month, since his company suddenly switched providers. We only had Eden on with Adonis, but we were planning on adding the new baby too, and it would have been reasonable to do this with the old plan, but not anymore. Edmond is on my insurance, and mine is reasonable but if I add another dependent, mine also quadruples to $480 a month, and I cant switch to Kaiser which would be only $200 a month for all of us, until Open Enrollment in January. On top of this I am only working until July or August and then going on pregnancy disability to have the baby... so we will have less money per month, along with these large premiums to cover... a little stressful, we just gotta tightly budget I guess until January, just trusting it will work out. 
  • We will definitely need to get a mini van sooner than later and are just trying to figure out what would be best for our family to do. With the new baby on the way, time is ticking and we wont be able to go anywhere as a whole family without a larger car. The car Adonis uses is on loan from Grandma Liz, but it is on it's last legs, so we continue to need another vehicle and soon. 
  • The apartment downstairs is being remodeled now and we will probably move down there in the next few months so that we don't have to climb stairs with Edmond and his equipment anymore and plus we will have 3 little ones, so easy access is better altogether. 
  • We were able to get a pediatric wheelchair on loan from California Children Services. I'll post the picture in here. I'm told the vendor has finally ordered our feeding chair and bath chair, after a huge mix up and miscommunication that needed to be sorted out... which is why we still have no medical equipment for Edmond, it's crazy how incompetent people are, and your kid has special needs!!... makes me wonder why are they working in this line of work. We have an appointment on the 16th to have him fitted for his own wheelchair as well. He is outgrowing his stroller and I had an incident where we took him with us to the movies with Eden and the little 20 year old manager came out and had to speak to us about the "No stroller policy" but allowed us to go in since Edmond is disabled, but then stated... "just bring a wheelchair next time".... well I almost gave him a piece of my mind and Adonis had to steer me away... it's not easy to get a wheelchair for your child, which we have had to learn the hard way and for some young punk to casually say that to me... as if I could run to Walgreens and pick one up, that was a little hard to handle at the moment, we had a good time at the movies though. But it will be better when Edmond can be in his own medical chair. 
  • Next week we are going to San Jose to check out a stander for Edmond that we can borrow from a non profit called ablecloset.com, who lend out used medical equipment to families.. this will help Edmond to put some weight on his legs and see how that feels for him. We have to see if he fits in it, and then we have to consider if it will fit in our house, alot of equipment is really large. 
  • My job is unbelievably stressful and coordinating all of the above on top of working full time, including my own prenatal care appointments has been extremely difficult for me. Keep me in prayer, it really is overwhelming and some days I feel unable to get through the pressure and just am pretty much in survival mode. My doctor wants to put me out in July to help with stress relief, but I just learned that I will not have my full protected family leave if I go out any sooner than 2 weeks before my due date of August 20th, because I haven't worked 1250 hours since I came back from my leave from caring for Edmond. But at this point I dont think I can make it to August and will have to leave in July, it's really just too crazy to juggle everything... and just figure it out as I go... hopefully my job will approve the leave that I request... I really need favor with this. I am praying for a way that I wont have to work for very much longer in my current profession... it's too taxing and too intense and I need my energy to fight battles for Edmond and just care for my family. Thanks for reading about our family and Edmond. -Candace

Thursday, January 31, 2013

G TUBE

Yesterday, Edmond had surgery to have a G Tube placed. This will be helpful to him in a number of ways. 

It will significantly reduce his risk for aspiration, 
give him the daily hydration his body needs, 
provide relief from his ongoing constipation issues, 
provide a sure way to give him nutrition, 
provide a sure way to give him his medication, 
alleviate the stress that feeding time puts on him and on us, 
allow us to focus on letting feeding time be a pleasurable and enjoyable experience. 

Now the task at hand is to get him healed up and to learn how to operate the G Tube feed machine and how to administer fluids safely to him through his G Tube. Doctors and specialists, as well as parents of Lissencephaly children have assured us that this was the best thing to do for Edmond and will be a better quality of life for him as well as for our family. We are looking forward to using his G Tube in our everyday life. If Edmond is able to develop better eating skills in the future, we are always able to take the G Tube out if he can do well without it. 

Edmond is so wonderful and easy to love. We love him to pieces. He's just been sleeping a whole lot since the procedure, but I expect him to have double energy once he is healed up well. 

Wednesday, January 9, 2013

Seizure Vacation

Happy New Year from the Segroves! 

It's been a while since I've updated. I started work on Dec 11th and it's been nonstop crazy go go ever since. We are seriously so tired. The house is in disarray. The kids probably need a bath like yesterday... yup life is in full swing. Thank goodness for our family who helps us get through each day. We are blessed, I don't know what we would do with their help, seriously. 

We've been on what I call a "vacation" from seizures, which has been the best news everyday for us. Edmond's been having many days without any seizure activity at all. It is such a nice day for us when he doesnt' have any. He is growing so fast and he is doing good in his therapy sessions. Adonis gets off work early on and takes him to physical therapy on Tuesday evenings and I get off early on Thursdays to take him to his occupational therapy. Edmond also still receives vision therapy and early intervention therapy. Edmond has been more active in kicking his legs and moving his arms, it's good to see him so alert and active which is definitely correlated to less seizure activity. 

Edmond was recently fitted for a type of activity chair/wheelchair for baby/toddlers. This chair will function largely as a feeding seat for Edmond, it's been more and more difficult to feed him in our arms, but he is a good eater and he hasn't been clenching his mouth as much so that's been really good. We are waiting for his bath chair still and have one on loan from California Children Services in the mean time. 

 


I just filled out a large packet for Edmond to become "institutionally deemed" and this way he will have Medi Cal as a secondary insurance to pick up any costs that our insurance will not pay for. Edmond is also being referred to a GI doctor to evaluate him for a G tube. Still waiting for an appointment, but this would be the next big evaluation and change we would have to take. Edmond doesn't get enough fluids because we have to thicken everything so he won't aspirate and it's a major concern of mine that his lack of fluids causes him discomfort in being able to pass bowel movements easily. We shall see what the doctor has to say about it's necessity. In the meantime, mommy tries to prepare food that will help Edmond in his digestive system... here is an example of what I prepare for him every day... 


Butternut Squash with oatmeal for breakfast, vegetables, lentils and turkey meat for lunch, and pears/butternut squash, odwalla smoothie with barley cereal to thicken, pumpkin puree with cinnamon and almond/coconut milk blend. I blend everything in the magic bullet for him. It can be a tedious for sure. 


I also have been pushing to get respite care hours for Edmond so we can help pay our Uncle Bob for all the respite care he already provides for us. Most of the paperwork has been completed so I"m waiting for our social worker to call us. 

Prayer Requests: 

For strength and rest as we are both working full time and juggling everything. 

For wisdom in what we should do about getting a secondary car, we are not sure if we should get a mini van now? or wait and just get a car that is good on gas... but we need to get another car soon (like within the next few weeks). We also are trying to decide if we should lease or buy a used car.... it's a big decision and one we don't want to be emotional about. 

For Edmond's continued vacation from seizures and continued progress 

For comfort and hydration for his little body and increased skills in drinking and eating

For Eden to sleep well at night and not climb into our bed, and for her to get potty trained already!    

Thanks everyone for reading and for loving us.