First of all, I want to thank all of you who have been praying for Natalee, loving her, and giving her encouragement.  Also, I know that some of you may not know what has been going on.  Natalee has had 5 bladder infections (UTIs) since September 2007.  She has always had an incontinence problem, and I have always been concerned about that, but her doctor always told me not to worry, that a lot of kids her age were "lazy" about going to the restroom.  He said she would grow out of it, eventually.  But she was always miserable, and when she said she needed to go, not matter where we were, we knew we had better find a restroom as fast as we could.  It had gotten so bad that she was wearing Poise pads to school.  I had tried punishing, praise, rewards, you name it to get her to go to the restroom.  It just kept getting worse, and then came the infections.  Finally, I got Dr. Orr to get us a referral to a specialist, Dr. Hogg.  In the meantime, this past week and a half, she also became unable to control her bowel function as well.  At first we thought it was because of the infection, but then it became almost like she had regressed back to before being potty trained.  She has been so upset all week, she said she could not feel anything that would let her know that she needed to go.
So we have kept her at home, and then on Thursday she went to see Dr, Hogg, a pediatric nephrologist.  The accidents were at a all time high on Thursday.  He said he could not help us, but that he was going to refer us to a pediatric surgeon or a pediatric urologist, but that he would be calling Dr, Orr and Dr. Orr would be setting that up for us.  I was disappointed that Dr. Hogg could not help us, but he answered so many questions that we did not even know we had!  He told us that the infections had been caused by a different bacteria each time, and that according to her tests that she had done when she was a baby, there was no dysfunction in her kidneys, and not bladder reflux, which is the most common reason for UTIs.  So I was to call Dr. Orr on Friday morning to see who he was referring us to, and make an appointment.
However, I met a woman whose daughter had been living with the EXACT symptoms Natalee has, and her daughter had just had surgery to correct Tethered Cord Syndrome.  We discussed it at length and every crazy thing she said, it was like, "oh my goodness, Natalee has that now!"  And then I would ask her questions, and her daughter had the same things happen to her.  So many pieces of the puzzle were fitting together it seemed.
So on Friday morning, I called Dr. Orr's office and explained Natalee that Natalee now had absolutely no control over her bladder or bowel functions.  The appointment clerk put me on hold, and a nurse cam on the line (Julia).  She asked me a few questions, but I never even mentioned that I had researched anything.  I just explained to her what was going on, and she said she was going to talk to Dr. Orr, but she thought we should take Natalee to the ER.  Dr. Orr agreed, saying that taking Natalee to the ER at Scott & White in Temple would eliminate getting referrals and waiting for appointments, but we could get any tests we needed done the same day. 
When we got to the ER presented our case to Dr. Matloff, and again I did not mention anything about what I had researched or what the woman I had met and told me, even though I had some information in my purse.  He ordered urine lab tests and an examination of her rectal muscle tone, which I expected, but he also ordered an x-ray of her spine, which I thought was interesting.  He explained that it was very crazy in the ER, and he apologized that things might move a little slow.  Then he came in and told us he was trying to get it approved for Natalee to have an MRI.  I asked if he suspected something like Tethered Cord Syndrome, and he asked how did I know that.  I brought out the papers I had, which I had highlighted what about the condition fit Natalee.  He asked if her could take it to his "boss".
Next thing we knew his "boss", Dr. D came in and explained to us that he had been working "behind the scenes" talking to hospital administrators and the neurology department trying to get approval for an MRI.  He explained that they would have to find that an MRI was urgent enough to be done from the ER, but that he was in our corner and doing everything he could do get Natalee some help immediately.  He said a child her age SHOULD NOT be having problems like this.  He examined her, checking her strength in her legs and asking her questions.  He even had her run around the room!  He got answers out of Natalee I didn't;t think you could get out of a 6 year old.  We discovered that Natalee's legs have been going numb on the top and inner parts of her thighs.  We don't know how often or for how long this has been going on.  I was very surprised, and she also showed where on her back she had been hurting, and that her legs hurt a lot as well.
He left, and before we knew it, came back in to tell us that the hospital had agreed that Natalee's need for an MRI was urgent enough to be done from the ER, and they were coming to get her.  We had an amazing child life specialist that came with us, and she really helped Natalee to not be scared, she explained to Natalee everything that would happen, and gave her lots of presents.  She even found some headphones for Natalee to use after we told her that is what made her feel safe from loud noises.  Natalee was perfect the entire time of her MRI, and I was in there with her.  She even came out smiling!  I think she was prouder of herself that we all were.  Then our child life friend gave a huge box of beads and she made bracelets while we were waiting for the results.
The MRI came back negative for Tethered Cord Syndrome (thank goodness), but Dr. Matloff said it was very obvious that whatever was wrong with Natalee was in fact a neurological problem.  He advised us to call Dr. Orr on Monday to get a referral to a pediatric neurologist as soon as we could.  So we left with that as our plan.
Then at 10:51pm Friday night, I got a phone call from Dr. Matloff (from his house no less!).  He said he had been thinking about Natalee and was concerned that a referral from Dr. Orr would not be fast enough, and that he thought Natalee needed to be seen as soon as possible by the right doctor.  He was worried that if I just went to our pediatrician that we might be sent to urology first, or that her problem might be taken not as seriously.  So he told me that he was going to call pediatric neurology at 6am Saturday morning, as soon as he got to the hospital.  He was also going to enter it into the computer system that he wanted Natalee seen by neurology.  He told me to call the pediatric neurology department in Temple first thing Monday morning to get an appointment as soon as possible.  How could he have known that my fear was that Dr. Orr would not take us as seriously as Dr. Matloff had?  I feared that I would call Dr. Orr on Monday, and Natalee would still be miserable for a lot longer than she had to be. 
After three years of telling her doctor that I think something was not right, I finally felt like someone was listening to me.  I told the doctors at the ER that, and they kept telling me they were on my side.  That was the best feeling in the world, to know that someone believed me!  FINALLY!!  And poor sweet Natalee has had to live through the difficulty of living with this everyday, the constant urgency, the embarrassment.  And then I think of all the time outs and things she has had to endure from me, and she really could not help it all along.  She has been such a trooper.  But until something is solved, or some kind of treatment is found to help her bowel incontinence, she cannot go to school.  I have already talked to her teacher, and we will be sending her work home for her. 
Please continue to pray for Natalee.  Please pray that God will continue to give the doctors and others the wisdom they need and also the ears to hear us.  Please pray for her teacher as we attempt "first grade distance learning".  Please pray for my mom, because we are trying to work it around so that she can stay home with her most days so I can continue to work.  Natalee will pretty much be stuck at home, unless we can figure out a pattern so that we will have "windows of opportunity" for her to get out.  Her incontinence that we have been living with all this time was easy to work with.  We just kept extra clothes around and it was not extremely difficult or noticeable all the time.  Her teacher has been wonderful at keeping it a non-issue at school, and we have been trying to deal with it discreetly as well.  But this new kind of incontinence is not as easy to deal with.  Thank you all for your love and prayers.

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Feb. 2, 2008 at 6:06 AM Huge Hugs for you and your little girl! How scary! I am glad you finally found someone to listen and hopefully she will get the treatment she needs. Don't beat yourself up about the past. The important thing is now you now whats going on and you are doing the best you can to get it taken care of.

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Feb. 2, 2008 at 6:21 AM

My heart goes out to Natalee! Her journey brings me to tears, Keep fighting for her momma!

You are her advocate! No one will advocate for your child like you will.

Keep strong and positive and I will say a prayer for Natalee and her family and for the Doctors.

God Bless!

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Feb. 2, 2008 at 6:35 AM

I'm so sorry to hear about Natalee.  That's so much for a little girl to have to endure, but she sounds like she's a real trooper.  She will be in our prayers, and I know He will take care of Natalee.  God Bless!

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Feb. 2, 2008 at 9:27 AM

Oh my goodness! I just want to squeeze Natalee with a huge hug...and you to mom! Us moms, we just get that "feeling" and you are so right to pursue what you sense! Have you asked Natalee to forgive you for the punishments you administered in the past, when it was not rebellion but incontinence? I've had to do that with my boys...we had issues and like you, ended up at a Pediatric Nephrologist!

Father, I pray for this mom, to find her strength in You alone. I pray she would continually be led by the promptings of the Holy Spirit and that You would reveal the source of Natalee's symptoms. I pray Lord, that Natalee would feel the love that is beyond measure during this time and that compassion and mercy be offered from her school. I ask for favor when appointments are made, that there would be no delay in bringing relief and restoration to Natalee. And I pray Lord, that whatever plan the enemy has for Natalee and this family, in bringing this against them...that those plans be cancelled. I pray that You be glorified and that Natalee's testimony would bring Kingdom glory to earth!!!! In Jesus name, Amen! 

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Apr. 23, 2008 at 12:19 AM GOOD FOR YOU MOMMA!! You are doing the right thing, and you have people on your side fighting for you!! That is sooo awesome!!! hugs to both of you!!! We are all on your side. please keep us updated, as you are now in our hearts, as well!

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