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Inspirational Articles by Lygia Lovelace

 

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!
Psalm 126:3

 

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 this time!

 

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 the day.

 

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 things.

 

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 for him.

 

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 issues.

 

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 involved.

 

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
is eternal.
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 updated.




 

 

 

 

Copyright © 2014. Faith Matters by Lygia Lovelace. All rights reserved. KenLovelaceMinistries.com




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