Currently viewing the category: "special needs"
“Ask, and it will be given to you;
seek, and you will find; knock, and it will be opened to you.
For everyone who asks receives,
and the one who seeks finds,
and to the one who knocks it will be opened.
3776. warming up on a cool morning
3777. seeing their eyelashes
3778. His truth spoken through my best friend
3779. sleepy kiddos
3780. having to wake F up in the morning
our of all of my shoots, the best smile goes to…
For I know the plans I have for you, declares the Lord,
plans for welfare and not for evil, to give you a future and a hope.
3771. restful moments
3772. homemade cookies
3773. camp at our house
3774. seeing clearly
3775. the sweetest of texts
i had a wonderfully wild fall
taking photos of some of my
favorite people on this earth.
check back in next week for plenty more photos!
But Moses said to the Lord,
“Oh, my Lord, I am not eloquent,
either in the past or since you have spoken to your servant,
but I am slow of speech and of tongue.”
Then theLord said to him, “Who has made man’s mouth?
Who makes him mute, or deaf, or seeing, or blind?
Is it not I, the Lord? Now therefore go,
and I will be with your mouth and teach you what you shall speak.”
3751. eating the most perfect egg sandwich, made by B
3752. being surprised at the end of the school day
3753. sharing a bowl of soup with F
3754. being healed so quickly
3755. cherishing a normal day
we are more than thrilled
to be able to share our story
on our dear friends’, katherine + jay wolf’s website.
check out our video here,
check out our story here
and our answers to their questions here.
photos by the talented emily blake.
Be strong and courageous.
Do not fear or be in dread of them,
for it is the LORD your God who goes with you.
He will not leave you or forsake you.
3746. God meeting us here
3747. L’s delicious little smile
3748. the freedom his crocodile gives us all
3749. yesterday’s rain falling delicately like snow
3750. being able to share what God has done in our lives
i’ve wanted to blog about this for a while
but it’s obvious that the time is now.
so back at the beginning of the year,
i met with a team to discuss doing something rather drastic…
putting L on a specialized diet
that would potentially stop his seizures.
he’s had so many breakthroughs over the past 15 months,
so it’s clear that the three medications he’s on
are not totally working.
the diet is called the ketogenic diet
and some kids respond really well to it
and can be seizure free for the rest of their lives
by only being on it for a few years.
others don’t respond to it at all
and others respond to it but only remain seizure free
while on the diet.
to initiate the diet,
L will need to be hospitalized for 4-5 days
for close observation
and i have been given
a long, scary list
of side effects
that can happen when beginning the diet.
i decided that having a new baby
and starting this diet
were going to be just too much to handle,
so we tentatively put off starting the diet
until sometime later.
but i was secretly hoping that we wouldn’t have to do it at all
because the entire thing is completely overwhelming to me.
L hadn’t had a seizure in 23 days.
i thought he may have been healed
or the medications were finally working
(one of his meds has recently been switched
to a brand-name medication).
and i was secretly rejoicing
because i thought maybe,
just maybe we wouldn’t even need to try the diet.
the diet is 90% fat
with just enough protein to keep him growing.
every single thing he will eat throughout the day
will have to be approved by the dietician
and the ratios of every recipe
will be calculated specifically for L.
we’ll use a gram scale to precisely measure all of the ingredients.
and no cheating will be allowed
as it will throw off the entire thing.
so that means no special treats at school
or for birthdays,
no eating out
and i’ll need to bring his meals with me
if we eat at someone else’s house.
and if he doesn’t complete a meal,
i will need to calculate how much of the meal was unfinished
and give him that percentage of a prescription ensure-type drink.
all within a limited time-period.
prior to the hospitalization,
i need to get his water intake increased by 100 percent
and he needs to cut out drinking milk entirely.
some crazy parts of the diet include
baking in silicon trays
as paper cups absorb too much fat,
only putting certain lotions on him
because did you know this,
there are carbs in some lotions?!
and, never giving him liquid tylenol or motrin
as they both contain sugar.
this diet wouldn’t be a small change,
in fact, it would completely transform mealtimes
for everyone in our house.
but then last night, he had a seizure.
but this one was stronger and longer
than what his seizures have typically been.
there was this brief moment where i thought that maybe
we’d need to use his emergency medication to stop the seizure
(in 3.5 years since being diagnosed with epilepsy,
we have yet to have had to use it).
or i thought that maybe we’d have to take him to the hospital
to have them stop it.
but then the seizure started to slow.
it hung on for a little while after the shaking stopped,
but then the relief came when it was clear
that he was finally out of its power.
and right then, in that moment,
i knew that we needed to try the diet.
just to see if maybe L wouldn’t have to be
a prisoner to anti-convulsant medications
for the rest of his life.
so, we’re going to try it this summer,
so that we can get it established before the school year begins.
it’s a three month commitment
and so we will commit.
And my God will supply every need of yours
according to his riches in glory in Christ Jesus.