Probably Not the
Most Exciting Article You've Ever Read…
…But Please Read It Anyway!
by Lygia Lovelace
In less than 2 weeks, we will
be returning to Cincinnati Children's Hospital -- Brooklyn,
Chase, Jonah, Elijah (all the biological children living
at home) and myself (Lygia). You may remember that only
a year after we moved to St. Louis, our bionicles (our "silly
word" for our biological children) were all diagnosed
with an inherited genetic connective tissue disease called
Ehlers Danlos Syndrome. St. Louis Children's Hospital recommended
Cincinnati Children's to us when Jonah stopped walking 2
years ago. Cincinnati Children's Hospital has a Connective
Tissue Clinic. Many of you already know that through multiple
doctors' appointments, different medications, 2 weeks of
intensive therapy in Cincinnati and LOTS and LOTS of prayer,
Jonah is now walking again!
The Lord has done GREAT
things for us,
and we are filled with JOY!
I want to describe to you what
we will be doing THIS TIME in Cincinnati. We need your prayers
so much. We were hoping that we could give you this information
and then you would commit to praying for our time in Cincinnati.
Are you willing? Then please keep reading!
We will leave on Thursday afternoon,
May 15. The next day, Elijah has an endoscopy. Through all
of the testing involved for the initial diagnosis of Ehlers
Danlos, and because Elijah has a lot of colon and stomach
problems, the doctors discovered that he has Helicobacter
Pylori -- a bacteria which causes chronic inflammation of
the inner lining of the stomach. Literally, he has been
medicated FIVE TIMES for this bacteria, and we've not been
able to get rid of it! Through all of this medication, we
have discovered that Elijah has an allergy to penicillin
and an additional antibiotic called flagel, which further
complicates the treatment.
Elijah's endoscopy on May 16
is crucial. They will take a biopsy of his stomach lining
and send the sample to a medical lab in Utah, where they
will attempt to grow the bacteria. If they are successful
in growing the bacteria (in other words, if the sample they
take from Elijah contains the bacteria), then they will
use various medications to test and see what kills it. Then
they will know how to medicate Elijah. PLEASE PRAY that
when they do the biopsy on May 16, they will capture the
bacteria so that the laboratory "growth" will
be successful. Otherwise we will have to start over. I cannot
tell you how much this bacteria has complicated Elijah's
GI issues. If we can kill the bacteria growing inside of
him, then the doctors are confident this will improve his
digestion, colon, and bladder issues greatly. Ehlers Danlos
comes with its own colon and digestion problems, but this
bacteria has magnified it.
Over the weekend, we will be
visiting special friends in Richmond, Kentucky, and hopefully
speaking in a church there to promote church planting and
all God is doing in St. Louis. We are looking forward to
Monday, May 19, we will be
meeting with the geneticist assigned to our family (from
Cincinnati Children's). Last time we were there, last September,
he met with us for over 4 hours! He is kind and extremely
intelligent about this disease. They ask us follow-up questions
and we ask them questions about the disease. They listen
to each of the kids individually, and while they are direct
in explaining to them that Ehlers Danlos is incurable, they
also have GREAT ideas for treatment.
I remember the first time we
met with this geneticist. I was so emotional because Jonah
was in a wheelchair and in so much pain. I just didn't see
how he would ever walk again. Doctors in St. Louis had NO
CLUE what had happened, and we felt like no one understood
us or could help us. Dr. Neilson got down on his knees in
front of Jonah and looked him straight in the eye. He said,
"Jonah, I want to encourage you. I know you are really
hurting. I know you are scared and feel like you will never
walk again. But I want to walk alongside of you in this
journey. I want you to know that I have seen kids just like
you, with your same disease, get OUT of their wheelchairs
and walk again. If you are willing to work hard, I am sure
you can do that too."
During our meetings with the
geneticist, he always suggests different specialists and
options for treatment for us to pursue while we are there.
He and his assistants also write EVERYTHING down as they
use our family, and many other families with this disease,
for research and information.
The new information we will
be taking this trip is as follows:
ELIJAH has developed HIGH blood pressure. He has almost
constant blood in his urine and kidney back pain. He is
fighting a heart condition (Postural Orthostatic Tachycardia
Syndrome) that is common in people with Ehlers Danlos. The
geneticist has told us that Elijah is one of the youngest
ones they have ever seen with POTS. This is a heart condition
that presents itself with extremely low blood pressure.
But for some reason, Elijah has taken a turn completely
the other way. He is on medication for high blood pressure
but at the same time continues to have POTS episodes. We
need wisdom on how to treat this. Elijah was hospitalized
here in St. Louis in March for hypertension stage 2. The
doctors here in St. Louis say they have no idea why he is
experiencing this and have basically just sent Elijah's
paperwork to Cincinnati Children's for review and possibly
some answers. Would you PLEASE PRAY that we can gain some
understanding of what is going on with Elijah?
JONAH is doing well with his
walking and his legs are strong (huge praise!!). However,
he has had many issues with his hands. His hands are tremoring
now and his grip is weak. He is in hand splints most of
the time. PLEASE PRAY that we would be able to find some
effective treatment for this. He is also having some GI
issues that he would rather I not talk about. He also has
been diagnosed with POTS and is dizzy and fatigued a lot.
But he is so delighted with his ability to walk! He takes
long walks in the neighborhood several times each day!
CHASE has a lot of wrist problems.
This has stopped all tumbling and involvement in the circus
here in St. Louis that he loved so much. But it is also
affecting his guitar playing and he especially wants to
strengthen his wrists so he can continue to play and sing.
He also has been tremoring in his hands for almost a year
now. He and Jonah will both see a neurologist in Cincinnati
for this. PLEASE pray that Chase can find ways to strengthen
his wrists and stop the tremoring.
BROOKLYN has already had 8
stabilization surgeries related to this disease, and now
she is facing hip surgery in the months to come. Cincinnati
Children's was able to get her into Vanderbilt for her POTS.
We will be going there this summer. However, she will be
going to Cincinnati this time to talk about other alternatives
for her hip. It is really affecting her walking and endurance.
PLEASE PRAY for wisdom as Brooklyn explores her options.
Brooklyn will also be seeing an occupational therapist and
a physical therapist for further evaluation and treatment
while we are in Cincinnati.
Our appointment with the geneticist
will take most of the day on Monday. Tuesday, May 20, Chase
and Jonah will each have an occupational therapy evaluation,
and then Jonah and Elijah will see the GI doctor later in
Wednesday, May 21, Elijah has
a full day with urology and nephrology as we try to sort
out what has been happening with him lately. Jonah also
receives treatment in urology. Ehlers Danlos causes incontinence,
but the urologist in Cincinnati has really helped Jonah
in this area through some medication (a huge praise!). Elijah
has to have pelvic floor therapy whenever we are in Cincinnati,
which will last several hours on this day. Because of this
disease, he has what they call a "megabladder".
He has been learning to completely empty his bladder and
he is on a timer to empty his bladder every 90 minutes.
That is going quite well, actually (praise!). However, we
are still seeing a lot of blood in his urine, which complicates
Along with urology and nephrology
AND bladder therapy on Wednesday, Elijah and Jonah have
appointments with cardiology and EKGs on this same day.
This will be an exhausting day for all of us!
Thursday, May 22, is physical
therapy day for Elijah, Jonah, and Chase. They will each
have lengthy evaluations to see if muscles have been strengthening
or degenerating. I'm excited about Jonah's progress and
I'm anxious for the physical therapist to see how strong
Jonah's legs are right now (a huge praise!).
I dread taking Elijah. His
legs and ankles are weak now and I know he's had some profound
degeneration. We will be taking the wheelchair for him on
this trip because I know he can't walk from building to
building while we are in Cincinnati. This is heartbreaking!
But the therapists are always encouraging and seem to really
motivate the boys to work harder to strengthen the muscles
around the joints, even when it's difficult and painful.
And they don't seem to mind if I am emotional at times.
After our physical therapy
evaluations on Thursday, Jonah will see a spine specialist.
Jonah has a lot of back pain which has hindered his movement
in the past. At age 10, he fractured four of his vertebrae.
The specialist will look at this to see if anything more
can be done to alleviate the pain he experiences in his
back. Back pain affects his ability to walk as well. These
doctors are proactive and we appreciate that so much.
Friday, May 23, is neurology
day. Chase, Jonah, and Elijah will go for evaluations and
treatment options-Chase and Jonah for their hand tremors
and Elijah for his neck. For several years now Elijah has
had what they call a "hot spot" on his neck that
he doesn't want anyone to touch. Sometimes it is painful
We always end our time at Cincinnati
a LOT smarter, with more treatment plans, more hope for
the months to come, AND extreme exhaustion! Friday night,
Ken and the rest of the kids will arrive in Cincinnati for
a weekend of much needed rest and relaxation! We are looking
forward to our "mini-vacation" and debriefing
of the full week of appointments. Then, on Monday, we will
return home to St. Louis.
Another prayer request that
we have is related to our "room and board" while
we are in Cincinnati. As you can see from our schedule,
it is imperative that we stay close to the hospital. Sometimes
the doctors will try new medications while we are there
and our children must be monitored closely. (We've been
to the ER before in the night because of medication while
we were there.) The hospital works with the nearby hotels
so that we can stay fairly close, and with a discount. However,
as you can imagine, the cost of rooms and meals is huge.
The past few times we've been there, God has opened the
door for us to stay at the Ronald McDonald House. It's wonderful-free
rooms, home-cooked meals, shuttle services…of course we
have applied to stay there this time as well, but because
so many of us are coming, they have said it would be "next
to impossible" for us to stay there.
But NOTHING is impossible with
God, right? Would you pray that if it is His will, the Ronald
McDonald House will open up for us, with enough beds for
us to sleep in?
If you are willing to commit
to praying for us during this time in Cincinnati, will you
e-mail us or fb private message us and let us know? Then
we will send you a schedule of our activities so that you
can pray more specifically. If you feel that this is something
God is calling you to do, then we would be SO encouraged
and SO grateful.
One more thing…we are continuing
to put together pieces of the puzzle regarding this genetic
disease that has attacked our biological children. This
past winter I (Lygia) was tested and diagnosed with Rheumatoid
Arthritis. RA is also considered to be Dysautonomia, as
is EDS. There are many similarities and my RA has obviously
contributed to their inheriting joint pain and weakness
Several people have asked us
if we thought living in St. Louis has caused this disease
in our children. (When we were living in Dallas, we were
all very healthy. We NEVER had to go to the doctor. Now,
a week doesn't go by when we are not either in the ER or
at a specialist appointment.)
Our response to this question
is NO and YES. Ehlers Danlos Syndrome (and the mild Osteogenesis
Imperfecta that Jonah has) (AND the heart conditions that
Brooklyn, Jonah, and Elijah have) are ALL genetic diseases.
The last time we were at Cincinnati Children's, meeting
with the geneticist, I told him about what people were asking…if
moving from Dallas to St. Louis had possibly caused or aggravated
this disease in us. I asked him what he thought. He said,
"Well, since these are genetic and inherited diseases,
I would say that theory is ABSOLUTELY RIDICULOUS."
However, we are in St. Louis
to preach and teach the Gospel. We have had many occasions
of spiritual warfare since we have been living here, and
we have become more wise to the enemy and his tactics. So…we
would have to say that YES the enemy is using this disease
to attempt to discourage us and send us away. The fact that
this disease presented itself in all of our children after
we came to St. Louis, and seems to worsen as we seek to
be a light in the darkness here is no coincidence, and definitely
a clear indication to us that there is spiritual warfare
But we will NOT leave here
until God says go. We feel a strong calling and definite
peace as we live and minister here.
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
II Corinthians 4:16-18
Please know that although
we have seen some setbacks with this disease, God has also
given us some HUGE victories! We pray that we can be a shining
light for the Gospel and for our Lord through this journey
we are on.
THANK YOU for your prayers and support. We will keep you
© 2014. Faith Matters by Lygia Lovelace. All rights