Maddie will be 15 this Sunday (Dec 9)

It is so hard to believe that Maddie will be 15 on Sunday.  She is so blessed and we are so blessed to have her to celebrate.  It's very hard to believe that 10 years ago on her 5th birthday we were faced with the horrible news that she was in renal failure and would need a kidney transplant ...not the best of birthday presents.  But because God is so good He decided that we should keep Maddie around for a long time and I'm so thankful He did!  So we will celebrate all weekend as we love birthdays at our house!  If you want to tell Maddie Happy Birthday, you can email her at peters68@bellsouth.net or comment on the blog.  Remember to continue to pray for her as she is stilll having problems and is now considering going ahead with the fallopian tube surgery as she is growing tired of being in pain.  Heart doctor appointment was rescheduled for January 23.  So we will have a busy next few months.  We are looking forward to celebrating Christmas in Louisiana with all of our family!  Have a Merry Christmas and remember God is good ALL the time!

Results are in!

We received the results from Mattie's neurological test.  The MRI was unchanged so the brain stem malformation is no worse (great news) and the EEG shows that she is not having seizures (praise God).  The next step will be the Heart Doctor.  She has an appointment for Jan 31.  They are trying to work her in sooner, but for now we will have to wait. 

After talking to numerous doctors yesterday, they decided that Mattie may be suffering from severe anxiety which is making her physcially ill.  After all she does not have a normal life for a 14 year old, but I will say we are so thankful for the life she has!  They have started her on a new medication that will hopefully help her deal with some of the surprises that life seems to bring her.  She is a strong willed young lady and will deal with whatever comes her way!

We are asking that you pray for everyone to be healthy for the next few weeks as we are going to the mountains for a few days to enjoy Thanksgiving. We are looking forward to a trip that does not involve schedules and doctor visits. Our family needs a little break from the day to day bustle. 

Thank you to all of our prayer warriors!  God is good ALL the time!

Lots going on

Mattie has had quite a busy few weeks.  She is now being checked for kidney stones as we are still having problems in that area.  Waiting for the test results to come back from that, should know something by Friday.

Over the past few weeks Mattie has been having dizzy spells, blury vision and light headedness.  Her regurlar doctor sent her for a cat scan last Thursday and decided it would be best if she went to see a neurologist.  The neurologist we saw Friday asked lots of questions that would explain somethings that Mattie would do when she was younger.  They think she may be having seizures.  Because it is not the type of seizure you would expect, like grand mal seizures, they may have gone unnoticed.  She will have a brain wave test and MRI with contrast on Thursday, Nov 1.  The neurologist is a little concerned about the brain stem malformation causing problems.  They fissure cyst in her head had grown a little from the last cat scan a few months ago, but they don't think that is what is causing the problems.  The neurologist also wants her to see a heart doctor for precautionary reasons.  He said that people normally with kidney and liver problems can have heart problems.  He also said some of this could be caused by blood pressure.  Not sure when we will be seeing the new heart doctor. 

We also found out a few weeks ago, the fallopian tube is blocked again.  It will need to come out at some point.  Mattie would be out of commision for at least a month.  So right now, she said she will deal with the pain and wait. 

I will do my best to post as soon as we have the results from the MRI and brain wave test.  Please keep the prayers coming and remember God is good ALL the time! 

Surgery went well

Surgery went well yesterday.  The bladder was so pretty it didn't even need a biopsy.  The doctor said this is good news and bad because it doesn't explain the problems Mattie has been having.  He said he would discuss possible options with the Kidney doctors and we will go from there.  The kidney numbers looked good but the doctor said sometimes inflammation doesn't show in the numbers.  On another note, PRAISE GOD, her liver levels were normal.  They have not been normal in 7 years so the new medicine seems to be working along with all the prayers!  The fallopian tube was drained and there was much more fluid than anticipated.  The ObGyn said we will just have to wait and see if this causes some relief with the pain.  We will also have to monitor it to see if the fluid comes back.  If it does, and the pain is better without the fluid, they will have to consider the surgery to remove the tube.  They are trying to avoid this as it could be dangerous due to scar tissue and adhesions.  Mattie would have to be opened up and it is likely it would cause damage to the bowel and or bladder.  So please pray the fluid does not come back.  We are at home today as she is supposed to rest and be watched to make sure there are no complications.  Please continue to pray for answers for our Mattie and remember God is good ALL the time, no matter the circumstance!  Thanks and love to all of our prayer warriors!

Update on Mattie - Outpatient Surgery Tomorrow

Mattie has been sick now for well over a month, she has been going to school and functioning on Lortab.  Tomorrow she will have a bladder scope, bladder biopsy and they are going to drain the large mass of fluid from the ovary and fallopian tube in hopes to relieve some of the pain.  If neither of these relieve the pain, we will basically have to start from the GI route and see if they can figure it out.  I know Mattie is getting tired of being sick and being in pain.  Please pray for her tomorrow. Her surgery should be around 2 oclock at Children's in New Orleans. 

Long Month

Sorry I haven't posted in a while.  Mattie has been sick for over a month.  The nuerosurgeon appointment went well.  He is going to monitor her on a yearly basis and check the cyst in the brain and the chiari to make sure there are no changes.

She has been suffering with itching and bladder/kidney infections for over month.  She was in the hospital as the only way they could give relief from the itching was to give her steroids and benedryl through IV.  While she was in the hospital a very nasty case of cystitis appeared so they gave her 6 bags of antibiotics through the IV and sent her home on 14 days of anitibiotics.  She appeared to be getting better and then it came right back.  It is very strange in that one day she can be well and the next day she is sick again.  The doctors say everything is systemic from the auto immune disease.  We went for a check up in New Orleans yesterday and her kidney numbers were not good.  We have to repeat labs on Monday.  If they are still too high, the doctor said he will need to do a kidney biopsy and a bladder scope to see what is going on.  In 9 years, we've only had elevated kidney numbers one other time and they said it was from a virus.  The numbers went right back down and everything was okay.  This kidney has been very good to Mattie and we want to keep it that way.  Please pray that maybe this is a virus or dehydration issue and her numbers will be normal Monday.  She is having a very hard time getting well this time.  She normally has little set backs that last a few days to a week, but this one is wearing her out.

The problems they face in treating her are what they would normally give a kidney transplant patient or a liver patient they can't give to Mattie because she has kidney and liver problems.  She is getting tired of being sick and ready to start school on Tuesday.  We had a long talk on the way home from New Orleans last night that God won't give her anything she can't handle.  This is sometimes hard for a 14 year old to grasp, but she understands.  She craves to be normal.  I told her this is our normal and we will continue to see the blessings along the way.  Please pray this is a dehydration issue and not a kidney issue.  We will be drinking lots and lots this weekend and praying.  Thanks as always to all of our prayer warriors!  Remember God is Good ALL the time!  Keep the prayers coming.

Great News

The results from the MRI are back and the only thing it showed was the brain stem malformation (Chiari I).  There are no cysts or fluid in her spine.  So we are not sure what caused it, but it does not appear to be part of the cystic disease.  What a blessing.  We will see the neurosurgeon next Monday, the 25th to find out if this is the cause of Mattie's headaches.  I will post again as soon as we find out any further information.

As of right now, Mattie is doing well with the exception of some sinus problems which seem to be never ending.  Please continue to pray for her and remember God is good ALL the time!  Love to all of our prayer warriors!

MRI underway!

Mattie is having her MRI as I type. It will take a couple of hours as they are doing the three sections of the spine with and without contrast. We have an appointment with the neurosurgeon next Monday. They want to make sure fluid or cysts did not cause the brain stem malformation. In another note the liver doctored finally called back and confirmed auto immune hepatitis. The liver disease has nothing to do with the kidney disease so we are dealing with two different diseases a cystic disease and an auto immune disease. She is doing well though and enjoying her summer. They did out her on another medication that will help her liver flush better and help her not to itch so badly. We have an appt with her GI doctor in July. Cincinnati told us she will need to be followed closely by her GI doctor so we will develop a plan with her and go from there. I will update as soon as I find out the results of the MRI. Still searching for answers. Your prayers are greatly appreciated. And remember no matter the circumstance God is good ALL the time.

Still Waiting - Neurosurgeon appt scheduled

I have left two messages this week for the liver coordinator to find out what the final report says and if there is a plan.  She hasn't called me back yet.  I have no patience so this is driving me nuts!  I know patience is a virtue, but I also know my momma always said don't pray for patience because there is no telling how God would teach it to me....so I remain impatient!  I did receive a copy of the report and it has more information than she gave me on the phone so I have a few questions as it reads that she may have two things going on with the liver.  One being chronic hepatitis and the other being mild intolubular proliferation of the small bile duct.  I wish I would have listened to Momma and became a doctor, then I could read all of this and not have to wait...still waiting impatiently : )

On another note, we decided to go ahead and set up an appointment with a neurosurgeon here in Jackson.  I found one that graduated from LSU and has worked at Children's in New Orleans.  Which means he will probably be familiar with what Mattie has endured the past nine years.  She will have an MRI that will take a couple of hours on June 18.  They will take pictures of all three sections of the spine to make sure there are no cysts or fluid that caused the Chiari.  She will see the neurosurgeon on June 25.  We are praying and believing for great reports from that. 

Remember God is good ALL the time even if you are impatient, He still loves you! 

Great News!

The preliminary report came in last night and it shows that there is no further damage to Mattie's liver.  It has not gotten any better but it has not gotten any worse.  This is most definitely an answered prayer.  She is at stage 3 fibrosis with no cirrhosis. Which means she still has about 75% liver function.  We are still waiting for the full report which we should have in about a week that could possibly give us more information as to what is going on.  As for right now, we are getting the same diagnosis, autoimmune hepatitis.  They do believe we are dealing with two different diseases.  The kidney disease is separate from the liver disease because the kidney disease is cystic and the liver disease is autoimmune. 

They are going to get the final report together and come up with a game plan.  We are praying to know that plan in about a week.  She will still need to see a neurosurgeon.  Once we hear their plan, we will decide if she will see a neurosurgeon at home or in Cincinnati as she needs to have an MRI of the spine to rule out some issues that can cause the brain stem malformation. 

Please continue to pray that the doctors will think outside of the box and come up with answers.  Pray for God's healing so that Mattie can start high school next year feeling well and function normally.  Remember no matter what God is good ALL the time.  Love to all of our prayer warriors!

Waiting on results

We were able to start driving today we made it to Nashville. Mattie is in some pain but doing well. We will make the rest of the drive tomorrow. The results were not in yet for the biopsy. We probably won't get those until the middle of next week. We did not get to see a neurologists but I did get to speak to him on the phone. He wants Mattie to have an MRI of the spine to make sure there is no fluid in the spine. We will wait to see what the biopsy says and to see what the next step is with the liver. So basically we are waiting as always. God is good ALL the time. Keep praying for healing and answers. Love to all!

Finished already

We are waiting to go back to recovery. They are all done. We will have to wait for pathology to review biopsy results. Please pray we get to see the neurosurgeon while we are in patient. God is god All the time.

Procedure under way

Dr just came out and said bile ducts look normal. They are starting the liver biopsy now. He said it doesn't look like there is any disease in the ducts of the liver so that is not what's causing the liver problems. Will wait now for the biopsy results.

No neurosurgery appt

We got to the neurosurgeons appt and they didn't have an appt for Mattie. Very aggravated. Hopefully they can do an in hospital consult tomorrow. Will update tomorrow after biopsy and scope. God is still good ALL the time.

On our way!

Left home last night about 8:30 and arrived in Nasville around 3:30 am. Thank goodness Betty and Matt don't require much sleep! We are on our way to Cincinnati and should arrive around 5:30. Mattie will have labs drawn tomorrow and we will get to see the neurosurgeon to see what is going on with the brain stem. Thursday will be the liver biopsy and liver scope. We will spend the night in the hospital and if all goes well be discharged Friday then head home Saturday. I will update blog as information is available thanks to all our prayers warriors! Remember God is good ALL the time!

Another Answered Prayer!

Well the neurosurgeon has been out of town and did not return until May 14.  Between me and clinical concierge, we have been trying to get Mattie an in hospital consult since the neurosurgeon did not have any available appointments until August (which is too long for a mother to have to wait)  I decided to call yesterday to check to see if they were able to arrange the in hospital consult and they had no luck.  She suggested I call the nurse just to see what the best date they could give us would be.  I spoke to the nurse and she wanted to know when we would be in town, they were able to give us an appointment for May 23 even though they were booked through August.  So Mattie didn't just get a consult, she got an actual appointment.  You can not tell me this was not all God.  I called clinical concierge back to let them know the good news and she said I can't believe this.  I have three other kids I have been trying to get appointments for and it seems impossible.  She told me that was perfect timing and I said no that was all God.  He answers our prayers!  Thank you all for being such great prayers warriors.  God is good ALL the time.  We will be heading out next Tuesday so please start praying for traveling mercy as our last trip was a little rough getting there.  Love you all!

Busy Busy Week & Prayers answered - Mattie is finally well!

We are having a super busy week as Mattie's best sister in the world is graduating this week and we are preparing to head out to Cincinnati next week.  Taking Mattie off all the antibiotics has apparently paid off along with all the prayers, because after four weeks of crazy illnesses, she seems to be finally well.  She got a good check up at the doctor Saturday.

We will be leaving next Tuesday, May 22 to head back to Cincinnati.  Mattie will have a liver biopsy and a liver scope on Thursday, May 24. She will hopefully be seeing a nuerosurgeon for the first time. This will be her third biopsy.  They are always informational as they tell us how much liver function she has.  She has never had this particular scope before but I'm sure it will all be fine as we can feel God's hands in this situation.  We know that we may or may not get answers but at least they are trying.

Keep the prayers coming as they give us great peace and what a joy the peace that passes all understanding is.  We will be updating the blog next week.  Love to all of our prayer warriors!

Benefit was a success & Maddie is sick again!

Yesterday was oh so busy, a special thanks to everyone who purchased dinners, gave donations and a very special thanks to all the friends and family that worked their behinds off.  You will never know how much we appreciate it all!

After all the excitement of the benefit yesterday, Ms. Maddie developed a large whelp that branched out from her knee to her thigh, so off to the emergency room we went at 8 last night.  After alot of blood work and a cat scan of her belly, we were told she is allergic to the antibiotic and that is what caused the whelp and she has an infection in her belly called mesentery peritonitis.  So guess what?  She has to change antibiotics again, this will be the fourth one in four weeks.  The doctor will check her again on Friday and see if there is improvment.  Please continue to pray for healing as we need her well so she can have her liver biopsy and scope in Cincinnati on May 24. 

Remember through the good times and bad...God is still good ALL the time!  He knows what He is doing and He is doing great things.  Love to everyone, keep the prayers coming.

The Overwhelming Love of a Child! Must read

We can trully feel the prayers pouring in.  That peace that passes all understanding is being felt in full force.  My wish is that everyone can feel that peace, it is unimaginable.  I have another heartfelt story to tell about the overwhelming love of a child that we have never met!  Prepare to cry!

My husband had a very nice man to stop by his office for business purposes, while he was there he saw some of Maddie's green bracelets.  Matt explained what the bracelets were for and told him Maddie's story and how we were traveling back and forth to Cincinnati.  He took one of Matt's business cards got a green bracelet and returned to his home in Florida.  When he got home he told his wife and daughter about Maddie.

Well Friday night Matt received a text from him that he and his daughter would like to talk to Matt.  They called to let Matt and Mattie know that his sweet daughter Rachel had been saving for quite some time to purchase an IPod Touch.  She wanted to give her money that she had saved all year to help Maddie.  Her parents told her to sleep on it and make sure so she slept on Matt's business card all night and got up the next morning to tell her parents she was sure that's what she wanted to do.  What a blessing Rachel is.

The love of a child is one of the most amazing gifts God can give us.  We don't even know Rachel, yet she did what she felt was right.  Rachel you are a hero in our house and I know you are also a hero in God's eyes.  The entire family thanks you so very much!  I bet you will get that IPod touch before you know it.  God always blesses those who bless others. 

Lesson for the day, hug your children and always let them be obedient to what God tells them to do because they are such a blessing to others!  Remember God is good ALL the time.  Please continue to pray for Mattie as she is on her third set of antibiotics in three weeks.  She has had a chest wall inflammation, sinus infection and now a double ear infection.  She has been on antibiotics for two weeks and they are not working so they started her on the third one yesterday.  Please pray this one works.  Love you all!

Dates Confirmed will be heading back in May

Dates are confirmed, we will be heading back to Cincinnati on May 23 for labs, and liver biopsy and scope that goes into the ducts of the liver on May 24.  They will keep Mattie in the hospital over night and then we will have to stay locally one more night and then head home.  They are also trying to set up an appointment with the neurosurgeon while we are there.  Their next available appointment is in August, but they said because she will be in the hospital, they may be able to do an in hospital consult.  Please pray specifically the neurosurgeon will be able to do an in hospital consult or schedule an appointment for that week so we don't have to wait until August to see him. 

Please also remember her family and friends are working really hard to put together the Jambalaya Dinner fundraiser for Monday, May 7 in Richland to help with travel and medical expenses. It will be much easier on Maddie to fly after having the scope and biopsy instead of driving for 12 hours.  You can contact Tina at 601-941-7531 for tickets or email me at peters68@bellsouth.net.  Thanks for all your love and support.

Remember God is good ALL the time and Prayers are our MOST IMPORTANT contribution.

Waiting on Confirmation of dates!

Sorry we haven't posted in a while.  Maddie has been sick this week with a nasty cold and inflammation of the chest wall and sternum.  That kid gets the strangest things!  She does seem to feel a little better today. 

We are waiting on insurance confirmation to go back on May 24 for a liver biopsy and some type of scope that goes into the liver. We are also waiting to see if the Neurosugeon wants to see her while we are there.  According to his nurse Maddie's file is on his desk waiting for insurance approval based on medical necessity and it is definite that he will want to see her.  However, they are 8 - 10 weeks out scheduling their appointments.  So please add that he will be able to see her when we are there in May to your prayer list. 

We have friends and family that are setting up a Jambalaya benefit dinner to help raise funds for our frequent trips and medical expenses.  It will be on Monday, May 7.  If you are interested in buying or helping sale tickets, let me know!

Remember to continue to pray for answers and healing and most importantly remember that God is good ALL the time!

We made it home!

We made it home late Friday night and were so glad to be home.  We had a wonderful Easter weekend and enjoyed being home to celebrate our Risen Savior!  Please pray for Mattie as we wait for results to come in from labs and start the scheduling process over again.  We are going to try to go back towards the end of May as we are blessed to have our oldest daughter, Michaela graduating from high school mid May. 

I know this week will be tough on Mattie as she has to go back to school and be faced with catching up on everything she's missed.  Which will be difficult considering she was already behind from being out sick.  Please pray for her specifically this week to be able to catch up and to feel well.  Thanks again for all of your continued prayers and support.  It is trully felt by our entire family!

Heading Home

We will be heading home tomorrow.  The doctors ordered all of the labs and tests they can at this time.  We will be coming back in the next month or so for a liver biospy and the other test they want to do.  The other test is some type of special scope that goes into the bilary ducts of the liver and there are only two doctors here that do this test.  So it is not something that can be scheduled quickly.  We will get home and look at calendars and figure out when will be the best time to come back.  The good news was no aneurysms, however the test did show a mild malformation of the brain stem.  The nephrologist is going to consult with a neuro surgeon to see if we need to do anything about this.  They did say this could be the culprit of all the headaches she has had for years.  While they await our return for the biopsy, the nephrologist, liver doctor and geneticist will be researching a list of diseases they would like to check Mattie for.  They are still gathering information.  It looks like we might be back more frequently while they try to figure this out.  They did tell us it could take along time or we still may never know.  We are okay because at least they are trying.  They are realizing what we already knew, God trully broke the mold when He made Mattie.  She has had a great attitutude and has been a great patient all week. I'm so proud of her!  We are all ready to get home and see our Mickey as we are very seldom apart.  We all are so ready to see her.  We will continue to update as some of the test results come in.  Some of the blood work they did takes two to three weeks to process.  It will not be a quick process by any means, but again we have a group of doctors that are working together and diligently researching all possible avenues.  God answers prayers and remember He is good ALL the time, no matter the circumstance.  Thanks for the prayers please keep them coming they are definitely working!

Productive Day

The day started later today but wound up being a long day.  Just getting in for the night.  Mattie had an ultrasound of the abdomen, a visit with the liver doctor then a test to rule out aneurysms.  The liver doctor has decided to start from a clean slate instead of working backwards. Her autoimmune marker was positive this time indicating she does have an autoimmune disease.  We ran into the nephrologist today again and he has been researching certain diseases.  He will get with the liver doctor and see what they can come up with.  They are going to try to schedule a liver biopsy and a scope that goes into the biliary ducts of the liver for Monday, but they said it is not likely to get it scheduled that quickly and we will probably have to go home and come back.  We will see the geneticist in the morning at 9 and then have a bone density scan at 12.  After that, we have to wait and see if they are going to be able to schedule the test or come home.  Will update again tomorrow.  Continued prayers for answers and wisdom for the doctors as they are trying really hard to come up with answers.

Nephrology & GI Appts went great!

We had our appt this morning with the Nephrologist.  He was so kind and full of knowledge.  He knew one of our doctors from New Orleans.  He listened to everything very carefully and has a few things in mind that he is researching.  He wants to do some test to rule out some issues.  They are going to possibly do a bone density scan and a MRV to make sure she doesn't have an aneurysm.  We have to call back in the morning and see if we are going to do these test before or after we see the liver doctor.  Also, he was going to meet with his other doctors this afternoon and they were going to discuss Mattie.  He said they would work closely with the GI doctor and the geneticist.  Great finally people working together!  His face lit up like a kid in a candy store when he found out which liver doctor we were seeing.  He said we get to see the head of the liver dept and he is the best in the country.  Pray for great details and answers tomorrow. 

On a not so great note, Mattie has to have an ultrasound tomorrow.  She can't eat after 6 in the morning.  So she is going to be a hungry girl...considering she hasn't been eating much it shouldn't be too hard! 

God is good ALL the time.  Thanks o much for your prayers!  Keep them coming.

Finally arrived and first appt done

We finally arrived after a two day long trip.  The trip was supposed to take about 11 hours but it was much longer!  We went through two hail storms and lots of stop and go traffic...but God is good ALL the time because we arrived safely.

Today was our first appointment with the ENT.  This was just an extra appointment to make sure my sinuses were all good since I've had so many problems in the past.  The ENT said my sinuses looked beautiful and he didn't think my nasal polyps were related to my other problems.  I'm supposed to continue irrigating and that should help keep me well. 

The hospital was kind enough to give us tickets to the zoo so I get to go see my relative's today  (just kidding)  Thanks so much for all of your prayers.  Keep them coming because tomorrow will be a long tough day with appointments and lots of information. 

Love you all!

It's Getting Close!

Well just a little update, we will be heading out Saturday monring.  Travel plans are made and all that is left is the packing!  Mattie has not been feeling well.  I'm very proud of her because even though she was not feeling well, she got up and went to school this morning.  Please pray that she will feel well enough to finish out this week of school since we will be gone all next week. 

We can't explain how greatful we are for all the love, prayers, and financial support to help us along this journey.  God has blessed us though so many people; alot of people we don't even know.  Thank you all for your continued prayers!  Will try to blog daily next week with updates.

Happy St Maddie's Day!

Today makes 9 years since Maddie's kidney transplant.  We celebrate the life that she received and call today St. Maddie's Day!  One of her doctor's names is Maddie so it only seemed appropriate!  So make sure you tell everyone Happy St Maddie's Day and wear your green bracelet. 

Two more weeks and we will be on our way.  Maddie is getting nervous so keep her in your prayers please.  Have a great day!

The Prayers are Pouring In!

We are getting closer and closer to going to Cincinnati.  All of our travel plans are starting to take place and come together.

I would like to say a special thanks to everyone who is praying for me and my family.  We can trully feel the love!  Thank you Aunt Barbie for speaking about me at First Baptist in Amite Sunday.  They had a special prayer for me!  I hear there are alot of churches that have me on the prayer list that I don't even know about.  We can really feel the peace that comes from the prayers. 

More green bracelets will arrive this week!  I love to see everyone wearing them.  Thanks again and remember God is good ALL the time.

Kind Hearts and Itenerary Received!

There have been so many great things done for us in the past few weeks.  And we like to share what we can.  I would like to share today about a very kind young man named Dalton.  Dalton got green reminder bands to sale at school.  Dalton is so giving instead of selling them, he bought them all with his own money and passed them out so people would see them and want one and ask what they were for.  God has trully blessed Dalton with the gift of kindness and a giving heart.  Thank you Dalton!

We received our itnerary yesterday.  I'm going to list the doctors by name and appointment.  Please pray for them that God would grant them the wisdom and understanding to figure out what syndrome Mattie has!

4/2/12 - Dr Paul Willging - ENT
4/3/12 - Dr. Rene Vandevoorde III - Nephrologist
4/3/12 - Dr. Jose M Garza - GI
4/4/12 - Dr. William Balistreri - Liver
4/5/12 - Dr. Robert Hopkin - Genetics

Thanks again for your support and prayers!  God is smilling down on you!

Prayer Warriors Come in All ages!

God is working overtime through people that are willing to pray for our family and me.  Today was a very special day.  My sister Mickey made a huge banner for me a month ago that I didn't know about.  People have been signing it and I didn't know it.  Tonight before our game they gave it to me and I was so happy I cried.  We played Madison tonight and they laid my poster on the table for everyone to sign.  A group of sweet kids from Madison that I had never met before saw the poster and wanted to meet me.  I was working in the press box and came down to meet them.  They wanted to pray with me.  Katie, Brady, Justin me and Mom formed a circle and held hands.  Mom asked who wants to pray and precious Katie said I do.  They are trully prayer warriors at such a young age.  What a tesitmony to being faithful to God.  My Nana called to tell my Mom that an entire church got up during church and went to the alter to pray for me....the whole church!  Ms JoAnn our cousin's Bible Class had a special prayer time for me this weekend and my Mom's boss, Ms. Carol, went to a Women's meeting this weekend and they had a special prayer for me.  God is showing off again and I can't wait to see what He will do this time!  Please continue to pray for healing and answers.  And remember no matter what God is good ALL the time.  Thanks again my new friends, Katie, Brady and Justin!

We got more green reminder bracelets in today that Aunt Betty ordered for me!  And thank you Ms. Tina for sitting there and selling them to everyone tonight!

Mattie's Story!

God has laid on my heart to share Mattie's story with what happened as it is a testimony to HIM and how HE can use you in what could be a dark hour.  It may be a little long but worth the read!

When Mattie was born she was sick all the time with regular illnesses, but they were constant.  It seemed as if we were at the doctor every two weeks, but nothing major or life threatening.  On Mattie's 5th birthday my Uncle who had watched her from birth to 3 years looked at her and told me something wasn't right that her color was funny.  She seemed thirsty all the time and her color was pasty white but other than that she seemed to be playing and having a normal birthday party.  I took her to a new pediatrician the next day and he did a urinalysis and thought that Mattie had diabetes.  He asked us to come back the next morning for blood work to make sure.  We went the next day for blood work and then went back to work and school.  Within two hours, the doctor's office was calling me to tell me to take Mattie to New Orleans to Childrens Hospital that she had a kidney malfunction.  We packed two days worth of clothes and headed to New Orleans thinking he meant kidney infection.  When we arrived, the Nephrologist was waiting for us in admitting and kept rushing the ladies that were admitting us.  I thought to myself, wow what a hospital that the doctor would come wait for us in admitting.  Little did I know what we were fixing to find out.  Mattie was then taken to get an ultrasound and that's when we found out her malfunction was renal failure.  She had one kidney the size of a pea and the other was covered in cysts.  She was then taken to get a biopsy as they were hoping they could find out what caused this.  We kept hearing over and over they may never know.  At the time, I could not fathom not knowing what was wrong with our sweet little girl.  The biopsy only showed that the kidney's were too far gone to tell.  She then went immediately to have surgery to place a tube in her stomach to go on dialysis.  After that surgery she was bleeding internally and they had to go back in to find out what was bleeding.  They found it and stopped the bleeding and she started dialysis.  I believe this all happened within a one day period.  Now for the good stuff.  Our first night there I was in the little room getting a cup of coffee and a met a wonderful creole woman named Janice.  She was at the hospital with her daughter, Asia.  Asia had down syndrome, and a liver disease and was on dialysis.  Asia case was much more complex because of the liver issues and because it was just Asia and Janice, there was no other family there with them.  At this point all of our family had come and we had people everywhere.  As I talked with Janice, we became friends.  The next few days were touch and go because Mattie had to have 5 blood transfusions and was now all of a sudden very sick.  During these days, we had people that drove hours to come see her and pray with us.  It was such a testimony because everyone around us could see the people that were coming in droves to pray for Mattie and our family.  It was quite amazing because Janice became friends with our family and would often ask someone to come pray over Asia.  Not only did the patients notice, but so did the doctors and nurses.  Everyone was in awe of how God was working during this difficult situation.  We had to stay at the hospital for two weeks to learn in home dialysis so we could bring Mattie home.  My sister, Betty stepped up and was my partner as it takes more than one person to hook a 5 year old up to a machine for 14 hours!  During our two week stay God showed off in more ways than one.  We had a church that drove an hour to come annoint Mattie with oil and pray over her.  I knew two people from a group of 20 or better.  The nurses and doctors are watching these special prayer services take place and it touched many.  It was funny because when we had a good day Asia would have a bad day and we would be able to be there with Janice as a single mother and pray with her.  When Mattie was having a bad day, Asia would be having a good day and Janice would be there for me.  We met many other precious children and parents.  We even had to be there one night when one mother lost her precious child, it was so sad but we were all there together.  Every day the big part of the day was the morning, because they would draw labs and then the doctor would come in with the report which would tell us if Mattie was getting better and if the dialysis was working.  We made friends with the Chief Resident while we were there.  One morning after labs she came in our room and was crying.  I told her it will be alright just go ahead and tell me what the labs are, we can deal with it.  She looked at me and said its not the labs, my brother is missing and I need you to pray for him.  Now imagine this, we are in the hospital with our child who needs a kidney transplant and God had showed off enough that a doctor was comfortable enough to walk in our room and ask me to pray for her brother.  Come on people, that never happens!  I went with her to the window seal in our room, we got on our knees and prayed for her brother.  Later that night, she came back in to let me know that he had been mugged and beaten up but was going to be okay.  God was really showing off that day.  After two weeks, we came home on Christmas Eve day to set everything up and get ready to start dialysis at home.  I can't tell you how many people dropped Christmas gifts and food off out our house.  It was amazing.  The next three months were spent getting ready for a kidney transplant.  What a blessing as I was a match and on March 17 I was able to give Mattie a kidney.  So March 17th became St Mattie's Day at our house as one of Mattie's main doctor's name was Mattie!  We stayed in the hospital another 2 weeks and Mattie came home doing well.  We had to go back to New Orleans every few days for labs and check ups for the first two weeks and Mattie couldn't go anywhere other than the hospital.  No one but immediate family could come in our home.  She had to give her dog away because of germs and we all had to wear mask.  God was still working as every day someone would drive through our driveway and drop off food even though they couldn't come inside.  I don't think I cooked for a month. 

After we were situated with the new kidney and back to some sort of normal routine, we moved to McComb as that is where my husbands job was.  I got a job at the school eventually and was able to be with the girls when they were out of school.  It seemed as if we had some normalcy back at life.  Then the sinus problems started.  Mattie about every two years has had to have sinus surgery in which they would go in and cut out 20 - 30 polyps.  They were sure she had cystic fibrosis but dna testing said she didn't.  So now we have another problem and no answers.  We still trusted that God would let us know when it was time.

When Mattie was 8 her liver enzymes started to be elevated every month.  So for the last 6 years she has had liver problems.  She has had two liver biopsies and they are still unsure what it causing it.  They believe she was born with a rare congenital disease that is attacking different organs.  We have never seen a geneticist but will get to see one in Cincinnati.  We have always prayed that we would find out what is going on in God's time.  We are hoping this is God's time, but if it is not, as hard as it is we will be we will be patient and wait on HIM!  Because God is good ALL the time.

The reason I know God wanted you to hear this story is to pray for Mattie, but most importantly, remember no matter what situation you are in HE can use you for HIS glory.  So embrace whatever situation and reach out and be a witness to others and HE will bless you for it.

On another note, Janice rededicated her life and reconciled with Asia's father so she is no longer a Single Mother!  Praise God. 

Dates confirmed - lots going on!

Children's of Cincinnati called Mom today and confirmed our dates.  We will be going for our first appointment April 2 and see doctors all week.  We are not sure when we will get to come home because it depends on what if any procedures they want to do.

I have been home sick for three days and was dehydrated.  Mom called my kidney nurse and she said I have to drink 3 liters of liquid a day.  As Paw Paw would say, "Gas Up"  so I feel like I'm going to drown from drinking so much.  I am feeling a little better and hope to be back at school Monday.

We will start with Guest Services Monday making all the travel and hotel accomodations for my trip.  Its exciting and scary all at the same time.  We have more bracelets coming in as we ran out!  We should have them by Monday or Tuesday. 

Remember to pray for healing and answers and God is good ALL the time!  Thanks for the prayers keep them coming.

Not feeling well again

Well I have been feeling great since Friday and it hit me again this morning.  I had to miss school today and went to the doctor for my monthly labs and another check up.  Please say a prayer that I will feel so much better when I wake up in the morning.  The doctors here won't do anything anymore, but they are so glad, as am I, that Cincinnati is right around the corner.  Remember God is good ALL the time.  Please continue to pray for healing and answers!

We Have Dates!

This has been an exciting week!  Mom just heard from Rhonda at Cincinnati and she has me scheduled to see doctors from April 2 - April 5.  This is tentative as each doctor's office has to confirm the appointment, but Rhonda doesn't think there will be any problems. 

It has also been exciting because people are starting to buy my green bracelets and my mom's work the MS Supreme Court started a love offering for me this week to help with my travel and medical expenses.  It is wonderful when God uses other people to bless us.  Thank you to everyone.  Please continue to pray for healing and answers! 

Green Bracelets!

I'm so excited because my Aunt Betty ordered reminder bracelets to sale to help raise money for my trip to Cincinnati.  They are green and say supporting Maddie's smile.  I love the fact that they are green because St. Patrick's day is coming soon and that is my kidney transplant anniversary.  March 17th will make 9 years since my transplant.  Green is also the donor color!  I hope to see green bracelets everywhere because I know people are praying for my healing!  God is good ALL the time! 

Waiting for appointments!

We have finally made it through the referral process and should possibly know dates next week.  My scheduler's name is Rhonda and I think we should pray for her as she has to try to coordinate all my appointments.  She said she will call Mom by next Tuesday or Wednesday hopefully with dates.  The referral process took a little long, but now all we are waiting on is dates.  Please continue to pray for me as I have my good days and bad days.  I will try to continue to smile through it!  Thanks for your prayers!

Prayers Needed

I'm happy to say I made it through a whole week of school last week, but I'm not having a good week this week.  Please pray for healing for me.  I was not feeling well again yesterday so mom took me to the doctor and they said it's the same old thing.  There is basically nothing they can do for me at this point and the doctors are very anxious for me to get to Cincinnati as they think a fresh pair of eyes looking at all of my many records will help us get to the bottom of what I have.  We should have dates this week.  We are just waiting on referrals.  Thanks for all your prayers!  Will update as soon as we have a date.

Cincinnati Called

The Hepatologist coordinator called today and said they would be getting the Concierge service to call because I will need to see about 5 doctors (Liver, GI, Kidney, ENT & Genetics).  The Concierge service called Mom within 10 minutes of hanging up with the coordinator. They are now starting the referral process and said they think I should be able to come visit them by mid to late March.  The schedulers will call next with appointment times.  They said I should be there about 5 days unless they need to do procedures and then we might be a little longer if they do.  The good news for now is until they decide what tests they need to do, I will get to be out patient so I will only have to visit the hospital daily instead of living there!  She did say they may decide to admit me once I show up but for right now they are going on an out patient basis.  We should have appointment dates next week!  And another blessing is that I have been able to go to school this week.  Keep praying that I continue to feel better each day! 

Antibiotics finally!

Just got back from the doctor and finally someone gave me some antibiotics.  I've had a low grade fever and not feeling well all week.  Looks like a UTI and a sinus infection and they decided after a week some antibiotics were in order.  Hopefully, I will feel better quickly!

Hepatologist called again today and they should be getting my biopsy slides by Monday or Tuesday then we can start getting our appointments set up!  Keep praying for healing for me!

Prayer Warriors Needed

Another Hepatologist Coordinator called today to say they have to have all of my biopsy slides before othey can set an appointment.  The hospitals in New Orleans are trying to get all of them to the doctors.  Apparently if we are seeing more than two doctors we need to go through the concierge service to coordinate all the appointments.  Felt like the lady today was giving Mom the run around about what doctors we needed to see.  We know it will all work out.  Please pray my biopsy slides get there and they can all coordinate all the doctors I need to see and figure this out without lots of headache.  Also, please pray that I start to feel better.  I've had low grade fever all week and not feeling very well.  They can't do anything to help me medicine wise right now because of my liver.  Thanks for your prayers, hopefully we'll know a date or have a better idea by Friday!

Still Waiting and not feeling well

We are still waiting for our appointment dates, but please keep me in your prayers as I am not feeling well.  I found out yesterday that my cholesterol is too high now and I will need to be on a low cholesterol diet.  That should be fun.  My magnesium is also low so I have to start taking magnesium again.  I wasn't able to go to school because I feel terrible and I am running a low grade fever.  They can't give me any medicine right now because of my liver function, so please pray God just heals me and I won't need any antibiotics to get well.  I will keep you posted, hopefully we will have our date this week.http://www.mattiessmiles.blogspot.com/

Busy Busy Coordinating!

We just received a call from the hepatologist coordinator in Cincinnati.  She is in the process of getting us a specific date as now they realize we are going to need to see many doctors.  We will be seeing a neprhologist, hepatologist, ent, and geneticist...that we know of!  Pray that all my records get there so they can have all the information about me which is alot considering it's been building for 9 years! 

All OnBoard

I had a long day today in New Orleans at Children's Hospital for my 9 year kidney check-up. The kidney looks good and other things are some better. The best thing of today was that all my doctors who have seen me there are all "On Board" to work with Cinncinatti doctors to try to find out what is going on with me. This is great news because now the doctors will know my whole medical history without having to repeat lots of information. Nine years of medical stuff is a lot of information. I also met Jadon today who is in the hospital fighting a bacterial infection. He is a strong little boy. I know exactly how he feels. I hate being poked and bothered when I don't feel good so maybe in a few months I'll have some answers. Thanks for praying for me and please remember Jadon in your prayers too!!

Quick, Wonderful news!!!!
Today I heard from Cinncinati and they have accepted my case. I had a date of March 2nd, but there is another doctor that I have to see so they may have to reschedule my date, but I am going!!!! I'll keep you updated, but please start to pray that everything will work out and the doctors will be able to give me some answers. I know God has something great waiting for me!!!

Finally some Hope!!!

Today was the day I have been waiting for for 9 years!!!  When I was five I was rushed to Children's Hospital in New Orleans in renal failure. My kidneys had cysts on them and had stopped working. They found out it was something congenital, but had no answers where it came from. I started dialysis everyday for ten hours a day and was able to go home. This went on for three months. In March, my mom gave me one of her kidneys and since then it has been in and out of the hopsitals and illnesses. My sinuses, liver and lots of other things are being affected, but the doctors all say it wasn't related. FINALLY a doctor is willing to put them together and has contacted Children's Hospital in Cincinnati to see if they are related in some way. Now we are praying they take my case and I can finally get some help. Thank you for praying for me!!!!