Lori Steinkamp Lassen

We're Back!!

2009-01-06T07:43:00.004-05:00

We are back from our trip to Cincinnati Children's Hospital. It was such a long, but worthwhile trip!!

Ashley is now on a daily enema program that is keeping her "artificially continent." We are also catherizing her, every four hours, to help with her bladder issues.

You can read all the details of our trip at www.caringbridge.org/visit/ashleylassen .

We are so appreciative of the prayers and support that many of you gave before the trip and while I was gone. The kids and hubby had no complaints!

I hope you have a wonderful 2009!

Lori

Keep Praying

2008-12-09T08:36:00.002-05:00

Thanks to those of you that have been praying about our insurance denials for our upcoming trip to an out of state Children's Hospital.

The insurance company said we could see the Doctors, but no testing could be performed. The point of the trip is to undergo ten different tests that will help the Doctors accurately determine Ashley's limitations and capabilities.

Both of the Doctors are doing a peer to peer discussion with a Doctor from the insurance company. We are hoping to hear back by tomorrow if they will cover the tests.

I spoke to our liaison from the hospital and she told me if they won't cover the tests we could go ahead and have them done. The hospital will try once more with the insurance company and if they still deny it, then we can fill out financial forms and determine how much of a write- off we would be eligible for. After the write-off, we could set up a monthly payment plan to pay the remaining amount.

We really don't want to go in debt, so we are hopeful the insurance company approves it. If not, we will go ahead with the testing. The Lord has not opened all these doors for us to go half-way. He will have to work out the details.

Thanks for your prayers!!

Lori

Fire in The Hole

2008-12-08T12:26:00.003-05:00

Sunday night was going along just as planned. We had arrived home from church, all the kids were ready for bed and two of them were already half asleep.

Ryan had asked if he could stay up for five minutes and play with Ashley. She was deep into a block building project that he wanted to be part of. I told him that I would set the timer on the microwave and when he heard it go off, it was time for bed.

I followed Scott into our bedroom and we started folding laundry. I heard a strange beep and even stopped for a minute to listen more closely. About 30 seconds after the "strange beep" Ryan comes running to the bedroom shouting, "fire, fire, fire."

Scott and I go running towards Ashley's bedroom in search of the "fire." About the time we rounded the corner in the kitchen, we noticed the glow of flames shooting out of the microwave.

Apparently, Ashley wanted to make sure Ryan followed the five minute rule, so she attempted to set the timer on the microwave for 5 minutes. Great idea, only instead of pressing "timer", she pressed "start" and proceeded to cook the bag of potato chips that we store in the microwave.

Being one that remains calm in an emergency (ha, ha), I lovingly beckon Kayla and Kyle from their beds (OK, I was yelling) and I gather my off-spring and head for the door. I then realize that I should call 9-1-1 in case Scott can't get the lovely flames to stop. I couldn't find a phone. I don't know about you , but I spend the better part of my day searching for my cell phone or the cordless phone.

As soon as Scott hears me lovingly instructing the children to find a phone so we can call for help, he chuckles (is this a time for laughter....I think not) and tells me to calm down. He was able to put the fire out with lots of water.

It took quite a while for the smoke to clear. It took even longer for the big kids to calm down enough to fall back asleep.

I'm telling you, we live an eventful life. Never a dull moment.

In case you are wondering, bar-b-que chips are flame resistant. Interesting........

Parenting Stories

2008-11-25T19:42:00.006-05:00

I wanted to tell you about our exciting weekend. As you can imagine, with the size of the garage sale we were having, there was a lot of preparation to be done. I had my week scheduled down to the minute.

Ashley was scheduled for a test on Thursday at a Children's Hospital that was an hour away. We found out that she would need to return on Friday for a second part of the test. Not a problem. I was already scheduled to help with the Thanksgiving Feast at my son's school, but I could leave in time to make it to the hospital for the final part of the test.

My youngest son asked if he could leave school early and go with me to take Ashley to the hospital. Being the fun (AKA, crazy) mom that I am, I let him leave early and accompany us to the hospital.

A five minute test turned into three hours of waiting for the Radiologist to read the test and give us a CD to take on our trip up north. Everyone was getting tired and hungry. We finally get the all clear to leave and so we headed to the closest drive-thru.

We were getting on the highway at 5:30 PM on a Friday afternoon. I don't think we could have picked a worse time to drive home. I felt like I was ahead of the whining game, as two of my kids sat in the back of the van, happily munching on Happy Meals.

About 25 minutes into the stop and go traffic, my dear 8 year old, announces that he has a headache and doesn't feel well. Thinking this was one of those false alarms, I tell him that we should be in better traffic soon. Just in case, my co-pilot (my mom) passes back the bag that our food came in.

Just then, the unthinkable happens. You moms know the sound. The sound of a Thanksgiving Feast going the wrong direction. Thinking that we were covered with our bag idea, I continued to drive with one eye on the bumper-to-bumper traffic and one eye on my son, who is now an interesting shade of green.

It gets worse. Apparently, a paper bag made in some factory, by a company with the lowest bid, is not the best receptacle for an eight-year-olds Thanksgiving Feast. The bag broke!

Luckily, I was in the left lane, so I quickly navigated my way to the emergency lane. If ever a person qualified to use the emergency lane, I figured this was it.

I ordered my son out of the car and instructed him to strip his pants off and put on his pilgrim costume, which luckily was still in the car. He got shy, and couldn't imagine taking his clothes off with hundreds of cars crawling by us on both sides. This was no time for modesty!

I get him back in the van, half dressed like a pilgrim and hand him the only good container I have left for car sickness, a crock- pot. Look people, don't judge me. This situation called for desperate measures. I figured the crock- pot would be a bit more sturdy than the bag, should another emergency arise.

We continued the hour long drive home (with the windows down) and then the clean-up began.

Isn't this parenting thing fun???!!! I'm telling you it is just a laugh a minute. I don't remember being warned about any of this in our parenting classes.

If you are driving over the Thanksgiving holiday, be prepared.....pack a bucket.

Have a great Thanksgiving!

Lori

P.S.-Don't get worried if I invite you over for dinner and it is served in the crock-pot. He felt much better once the traffic started moving and didn't need to use it.

We are so thankful

2008-11-25T06:30:00.002-05:00

Last Saturday we had a HUGE garage sale. Many of our friends and family donated items for us to sell. We are using all of the proceeds to help with Ashley's medical expenses. At 6 AM on a cold Saturday morning (well, cold for Florida), my brother-in-law, two friends and three of my kids were covering our yard and driveway with all sorts of goodies.

We had 11 friends and family stop by during the day to help us with the selling and then the clean up. Our older daughter, found her niche. Sales. She wore an apron and followed people around, making deals. It was hysterical to see a nine-year-old love to be a part of a garage sale. We discovered that you either love to do yard sales or you hate it.

Another friend, showed up at 6:30 AM with hot chocolate and donuts. She set up an adorable table for our kids to sell the goodies. All day long, the kids took turns manning the concessions.

We had so much to be thankful for as the day progressed. We could have never set up or sold all that we did without all the help.

The best news is......we raised almost $1,200! Can you believe it? We sold two bigger priced items ($150 and $85) and other than those items, it was lots of smaller prices. God is so faithful!

We had so much left over that next weekend we are setting up again in another relatives yard to see if we can sell the rest. Pray that we have another Saturday of great weather.

Have a wonderful Thanksgiving! I hope that you and your family enjoy of day of giving thanks to our Lord for all that He has done.

Give thanks to the Lord, for he is good; his love endures forever. Psalm 107:1

With Thankful Hearts,

Scott & Lori

Advances in bladder surgery

2008-11-24T10:17:00.002-05:00

This is an encouraging article about bladder augmentation surgery. We know that Ashley will have this surgery done sometime in the next few years. It is wonderful that advances continue to be done to make this surgery a bit easier.

http://www.newswise.com/articles/view/546659/?sc=dwhn

Almost There....

2008-11-12T11:06:00.002-05:00

Phone calls, faxes, planning, canceling appointments, re-scheduling appointments, authorizations, referrals, begging insurance companies to be nice......this is what the last few weeks have looked like.

We are just a few weeks away from heading north. I honestly took a "medical break" over the last two weeks. I resigned that I would do no trip planning or worrying. A few days ago, I re-entered the world of out of state medical care and the calls have not stopped.

So far, the insurance company has approved our visits with all of the Specialists we need to see. These Doctors have reviewed Ashley's records and they want further testing done. While we are there, she needs to have ten tests done. One test is being done in Florida before we leave. Some are easy, like x-rays and some are nuclear tests that take half a day.

I am going to have to make sure I pack Ashley lot of goodies for that week. I'm sure she will be sick of seeing people in scrubs.

I had the chance to speak to a mom that has a four year old with very similar medical problems. She has also been to Cincinnati Children's Hospital, so she had a wealth of information to share with me.

It was informative, but at the same time, it reminded me that until now, we have not really had to deal with Ashley's disability. Once we start this process, her life will never be the same.

I know in my heart that in the long run, these procedures and appointments will eventually help her in her quality of life, but I hate to put her through this.

I found out from this other mom, that the daily bowel clean-out takes anywhere from one to two hours a day. We will have to figure out when to schedule this into our day and also figure out how to get a little antsy girl to cooperate.

I keep trying to tell Ashley a little about our trip. One day in the car, she saw an airplane and asked when Mommy and Ashley were going on the plane to Cincinnati. I was shocked at her question because I had not even spoken to her directly about the trip. She had just been listening to all the conversations that I was having.

She knows she is going to see a Doctor and she knows that after we go to Cincinnati she will be able to use the potty like a big girl. I figured I would wait until we actually get there so explain how her potty experience will be a little different.

The Lord continues to amaze us with his faithfulness. I was just telling my Pastor the other day that I can't wait until Ashley is old enough to grasp all the ways the Lord has had His hand on her life.

When I have more time, I'll share more about all the faithful things the Lord has done for us in the planning and execution of this journey.

Still Trusting in Him,

Lori

God is so good!

2008-10-17T21:39:00.002-04:00

We serve such a faithful God! Last night, my sweet hubby and I were sitting in front of the computer looking at airfares, hotels, etc. and seeing the price for each grow by leaps and bounds. We just kept saying that we have no idea how this will work out, but God is going to have to show up in a HUGE way if this trip is His will.

Don't you know that He did show up!! Today, a huge mountain was moved right before our eyes. The details of this gigantic miracle aren't important (I don't want anyone to get embarrassed), but the Lord used some faithful servants to pour His mercy into our family.

Later in the day, I had my first phone call with a sweet girl that is our assigned "Guest Relations Liaison." She works for the hospital and her job is to make us getting there affordable and easy. She had tons of ideas for economical flights. Did you know that people with unused airline miles can donate them to several airlines and those are turned around and used for children traveling out of state for medical treatment? I had no idea!! I have started filling out applications to see if we could get approved for any of these programs.

Jackie also told me that I should stop looking at the web site rates for local hotels. Their hospital works with almost 50 hotels and she can get us a rate that is almost half off for some of the hotels. We need to pick the hotels we are most interested in and she will get us a decent rate.

Minutes after Jackie called with the hopeful travel news, I had my first conversation with our assigned Urology nurse. She already received all of Ashley's records and she wanted to go over some things with me. She did warn me that their team will more than likely repeat most of the tests Ashley has already had done in Florida. She said, these are such sensitive tests and the technique one person uses can change the results. Their Doctors prefer to govern the tests and results. I completely understand this in theory, but it adds a burden of more testing for poor Ashley.

I have to admit I had my first panic attack last night. Well, not really, but my heart was heavy. I just kept telling the Lord that I need Him to work this out because this mountain seems far to big for us to move on our own. There were many tears shed today over His faithfulness.

I know that some of you that read this blog are friends of ours, some are family, some hoped over here from the Rejoice Ministries website and some may have just stumbled to this blog on accident. Whatever the reason I want each of you to know that God cares about each of you just like He cares about us. If you have a trial that is tearing your heart out, give it to Him. He has promised that He will not leave us and He wants to carry us when our load seems to great.

I am thankful that He chose to only have us wait 12 hours before He sent the people that brought some answers to the many questions we had yesterday. We have other things going on in our lives that remain unanswered after many, many months. If you are also patiently waiting on Him, continue to do so. Then, when He shows up in a big way, shout it from the roof-tops (or the blogs in our case. :) )

Trusting in Him,

Lori

Plans are made

2008-10-16T13:15:00.002-04:00

Well, we have received our date to travel to Cincinnati for treatment. We are going before the end of the year. I just found out that we were given enough visits from the insurance for the week long clinic.

Scott and I can't believe that the Lord worked out the insurance details and we are approved for the entire week after all. God is so good! The nurse emailed me today and she is arranging the few outpatients tests that Ashley needs to have done. They want them done in their facility, not at our hospitals.

We are waiting to hear what tests the Urologist wants done on her, then they should be sending us an itinerary so we know where we need to be each day. This way they also try to space out her tests so she isn't going through a lot of things on a daily basis.

Please be in prayer for the following:

* Travel - we are seeking the Lord's direction on our arrangements. We have about 6 possible scenarios and we need to decide soon what the final plan will be. We are also praying that once we arrive there will be rooms available at the Ronald McDonald House for us. (You can only request a room 24 hours prior to your arrival)
* Kayla, Kyle & Ryan - having mommy leave for 10 days is not welcome in any home and ours is no exception. Pray that the kids understand as best they can, why this is necessary and also understand more about Ashley's disability. Because of Tyler's death, they ask lots of questions about Ashley. They probably could explain her problems better than I can. Every once in a while, one of them also re-confirms that what she has isn't terminal. I don't want them to be nervous or worry about her medical care and sometimes the unknown is worse to a child.
* General planning - I have eight weeks to get a lot accomplished to make this trip a reality. Because we could be coming back closer to Christmas than planned, all of the December preparations must be complete before I leave. (Don't hate me if you don't get a Christmas card this year)

We are confident that what has worked out so far was in no way an accident! The Lord has orchestrated this trip and we are trusting in Him to bring all the chaos together and get us there the best way. That being said, I will probably need each of you to remind me of that when I am walking around frazzled.

Thanks again for your love and prayers!

Trusting in His Plan,

Scott & Lori

We're heading north!!!

2008-10-09T18:47:00.002-04:00

I hold in my hand the authorization from our insurance company for Ashley to be seen by the Doctor at Cincinnati Children's Hospital!!! It feels like we started this process months ago, in reality it has only been one month.

The insurance would not approve the week long bowel clinic until she is seen by the Doctor at CCH. Hopefully, tomorrow we will find out when the consultation will take place.

After reviewing Ashley's records, the Doctor in Ohio wants her to have two more tests done. One test is not comfortable and requires Ashley to have only clear liquids for a full 24 hours. I am waiting to hear back from the nurse in Ohio to see if that test can be performed here at home or if it has to be done in their facility. I think I could control her better on a 24 hour fast at home, but we will do whatever is best for Ashley.

We really appreciate all your prayers!!! Please be in prayer that the scheduling will all work out. I feel like after getting past this hurdle, anything else will be simple.

Lori

Red tape

2008-09-30T14:41:00.004-04:00

Today, Ashley's Pediatrician wrote a letter of request to the insurance company. Her Urologist is also writing a letter. Until the insurance company gets the letters and all her records, we continue to wait.

I also heard from the Doctor at CCH. They are trying to get us a Urologist visit and the Surgeon has ordered a couple of tests that Ashley has not yet had done. Once the insurance issue is resolved we will find out if those tests should be done here or at CCH.

Lori

Still waiting

2008-09-25T13:11:00.001-04:00

We are still in the midst of trying to get permission from the insurance company to leave the state for treatment.

Today, the Pediatrician is writing a letter and they are sending the insurance company more records.

I'll let you know once we hear something.

Thanks for your prayers.

Lori

God has perfect timing

2008-09-16T08:24:00.002-04:00

Last week our Urologist gave me the name of another patient's mother. He said that her daughter had been to the bowel clinic at Cincinnati Children's Hospital and she may have some information that would be helpful.

We had the chance to speak yesterday and her daughter has exactly what Ashley has, Sacral Agenesis. I can't believe that I found a sweet lady with a daughter only 1 1/2 years older that lives 30 minutes from my house.

We talked on the phone for quite a while. She has been through everything we are in the midst of right now. She had wonderful recommendations for me and even suggested some different Doctors.

A few hours later, I received a call from the nurse at CCH. She reviewed Ashley's records over the phone and asked if there were any other medical questions that we would like addressed when we are there.

This week, the insurance liaison from CCH will be contacting our insurance company to get permission for us to travel out of state for treatment. Please pray that the insurance company will have favor on us and let us leave the state.

At this point, I think Scott and I are both convinced that no matter what, we have to go. If the insurance company won't pay, we will have to come up with another solution.

After speaking to this mom today, I believe that the program Ashley could undergo could possibly change her life.

I'll let you know when we hear something.

Lori

Urologist visit

2008-09-10T12:47:00.002-04:00

Today we took Ashley to see the Urologist. It was a good appointment. Our Doctor is really good about taking time to sit and explain things to us and thinking out loud. Here is where we are in a nut shell:

Bladder Augmentation: They did an ultrasound today and it reconfirmed the tiny size of Ashley's bladder. She stores no urine in there....everything leaks out. The good news is that because there is no high pressure in her bladder, her kidneys are healthy and not at risk of any damage. The Doctor talked about doing a surgery to partially obstruct her bladder thus causing it to grow, but he is not confident that it would expand so that would be useless.

This Doctor feels the optimum age to do an augmentation is 5 or 6. He admitted that psychologically there is a lot to deal with being in diapers until 5 or 6, so he may decide at age 4 to do the surgery. He said it is a huge surgery with long term ramifications on her body, mostly the kidneys. That is why he likes to let the child get out of the pre-school age group. For now, we will re-address the augmentation age at a later visit.

He suggested we do some research on other Doctors and their optimal age for augmentation. He is open to discussing it at our next visit if we find reason to move it up.

Cincinnati Children's Hospital: Dr. L has heard about their bowel clinic and he has even had patients that have been there. He thinks it would be wonderful if we could take Ashley there for the clinic. He feels that it would be a great source of knowledge for us on her bowel condition and may even allow her some sense of normalcy.

He did say that based on her level of defect and how severe her neurogenic bladder is, he would be confident to say that her bowels are equally affected and there is no chance of her being potty trained (on her own) for bowel movements.

Dr. L also said that if we make it to CCH and they find that because of her diagnosis they can't get her on a successful bowel program, we should not be discouraged. He said that we should view it as a diagnostic test and it is another answer to the puzzle of figuring out what is best for Ashley long term.

Duplicated Uretheral Openings: Dr. L confirmed how rare this is. He said that he would think someone would have caught it before now, but sometimes it is missed. Right now he wants to avoid any more testing in order to make this diagnosis. He feels that it wouldn't change any of her course of treatment and we will see if it manifests itself later down the road.

Our plan for now is to continue the process to go to CCH. I did hear from them yesterday and they have an opening in December. We are sending all of Ashley's records up there today and hopefully next week we can start the appeal with our insurance company.

We really appreciate your prayers for us and Ashley. I know I say this in every post, but we feel so blessed. After losing a child we understand the brevity of life. Ashley's problems don't compare to some things other people experience. We realize the permanence of her limitations, but we realize that she can continue to live a slightly altered life and be the same happy, chatty girl she is now. That is such a blessing!

Love,

Lori

Ashley can't catch a break

2008-09-04T13:47:00.002-04:00

Ashley has been a relatively healthy child. She has rarely been to the Doctor for things (other than UTIs). Over the last three weeks she has had a UTI, pneumonia and the stomach flu. I feel blessed that with three other kids in the house she has never had the stomach flu until now.

Next week we are going to see the Urologist. Hopefully she will be over all these little ailments by then. We are hoping to discuss her long term goals like when the bladder augmentation will be done and what we can expect in the future with her bladder and kidney issues. Our pediatrician noticed an abnormality with her urine output so we are anxious to speak to the Urologist about that as well.

I'll let you know how her visit goes next week! Pray that Hurricane Ike stays away from Florida!

Lori

Back to school

2008-08-20T11:35:00.003-04:00

The three older kids started school last week. Ashley is a tad lonely without them. She cried the first day because as she put it, "I want to go to second grade." Apparently she feels she is ready to jump in at second grade. She is so funny.

Everything is still quiet with her for now. I think she has a UTI, so I will be taking her to the Doctor this week to get some antibiotics.

We are going to switch a couple of our specialists in the next month. We would appreciate your prayers as we find the right Doctor. It is hard to find a Doctor that has treated patients with similar issues. Right now some of our Doctors ask me to print off any pertinent articles for them to keep in their charts. I don't need the pressure of being mom and Physicians Assistant. I'm sure we can find Doctors that have dealt with Sacral Agenesis or at least Spina Bifida.

Ashley is still becoming very aware of her inability to use the restroom. Please continue to pray for her to adapt to this reality or that the Lord would heal her if that is His will. I would love nothing else than to have a new MRI or Urodynamics study done and find a different result. He is able!

Beginning in September we will see several of the specialists again and start the next round of testing that will be done at the end of the year.

Thanks for all your prayers.

Lori & Scott

I'm back!

2008-07-31T21:52:00.004-04:00

Ashley loves her baby dolls

I can't believe how long it has been since I posted. It feels like it was just yesterday. Ashley has been doing great! We have had a fun summer and I am so sad that the big kids have only 2 weeks left before school starts.

The barium enema test came back and showed the GI Doctors nothing that they wanted to see. Basically, it was a waste of time and energy. Because of the type of problems she has they thought it may be inconclusive and they were right.

We are back in the boat of attempting to toilet train Ashley for her bowel movements. Because of her age, and lack of testing to determine her continence or incontinence, we have to try, try, try and see what time shows.

We saw the GI Doctor this week and he still is fairly confident that she is showing signs of fecal incontinence. We are really praying that the Lord steps in and touches Ashley so she can have one less thing to worry about in the future.

Here is our prayer list:
1. Ashley is really wanting to "go potty" like everyone else. One morning a couple of weeks ago, she woke up and announced, "I want to wear pull-ups." Since then, we have had days where she wears diapers, a pull-up over that and little Dora panties over the pull-up. She is very padded!

Someone suggested I read a pamphlet that the Spina Bifida Association puts out about explaining to kids that they will go potty a different way. Spina Bifida is the closest related disorder so I get lots of information from their site.

Just pray that in the days, weeks and months ahead, Ashley copes with the differences she has and accepts them as her normal. Right now, a two year old can't understand why a pull-up alone isn't absorbent enough for her needs and we must stay in the diapers. She wants to be like her friends and sister.

2. Ashley's other problem is a syrinx (syringomyelia). This is a sac of fluid that has collected on her spinal cord. If there are no neurological changes, then she just has MRIs once a year to make sure it hasn't changed. The Neurologist said to call if we notice any sudden changes, like she is falling a lot, can't balance, etc.

We have noticed a sudden change that we attributed to one issue, but in doing further research it could be an indication that the syringomyelia has grown or moved.

We are hoping to hear from the Neurologist on Friday. Hopefully he will put our minds at ease that these issues are not related.

Please pray that he has wisdom to evaluate the symptoms and that the Lord will give me the right words to describe the changes.

Lori

Waiting for results

2008-06-27T21:00:00.002-04:00

Thanks to those of you that prayed for us today. Ashley had her barium enema done. She did relatively well, considering the type of test. The Doctor ordered a "post evacuation film", which means once she empties the barium out of her system, they take another x-ray. We waited for quite a while and she never emptied. This is some of the problem, so it was good that the Radiologist got to see it in person. The good news is once we got home (well, almost home) she started getting rid of the barium.

We are hoping to get the results next week. Ashley has had a rough afternoon and evening. We are changing her diaper every 20 - 30 minutes. She is sleeping now so hopefully things will calm down in her little tummy.

Here is our prayer list:
1. Pray that Ashley has an easy recovery from the barium enema. Those of you that have had this test understand what that means. What goes in, must come out. Pray that Ashley will take the needed medications, stool softeners, etc. that will help her constipation. She is a little Kayla and that means I have another bad medicine taker on my hands.
2. Pray that her Doctors will have wisdom to make the proper decisions for her. Like I have said before, each child with this disability is different and we want to make sure we find the right treatment plan for Ashley.
3. Pray for Scott and me. There are so many specialists that we take Ashely to see. Each one of them has their own agenda for their area of expertise. We have a folder stuffed with records, letters, discharge papers, etc. and a notebook with notes that we take at each appointment, after each test and when we notice a change in something. I don't want to think about how many hours I have spent on the internet trying to pick apart a medical article and understand how it may help Ashley.

Pray that we can understand the different diagnosis, plan of treatments and options that each Doctor sends our way.

Thanks for your support. I just finished rocking Ashley back to sleep (after my 452nd diaper change of the day - but who is counting) and I just love that God thought us able to care for her. She is the sunshine in our family. The three other kids just love doting on her and day by day they are asking more questions and trying to understand her condition. Each of them understands that she will be different from them in many ways, but we love to watch them beg to sit by her in the car, or compete for the Ashley stamp of approval. So cute!

Have a great weekend.

Lori

2008-06-25T22:09:00.002-04:00

Today, Scott and I took Ashley to see a new Gastrointerologist. Our current GI Doctor wanted her to have the anorectal manometry test done that only this Doctor can perform. It was an informative visit, but frustrating.

It feels like we have seen so many Doctors and each time we go to another one something new comes out. I don't know if that is good news or not. I'm sure it is, but it does wear on a person.

Dr. G (the new GI) is not ready to jump into the manometry test. He said it is very uncomfortable and you need a somewhat cooperative patient. Since Ashley is two years old, cooperative is not in the vocabulary. He has ordered a barium enema, which she will have done in two days. Dr. G feels this test will show him how her intestinal anatomy is working.

Once this test is done, we are back on a new and more advanced bowel "clean out" program. During the exam today he discovered an anatomical irregularity in her rectum that is probably not helping her bowel issues. Poor Ashley had to endure a terribly uncomfortable exam today, but hopefully it will help her in the long run. Dr. G feels the new bowel program will aid Ashley in her bowel issues.

We really appreciate your prayers. I know I probably say this in every post, but we feel so blessed that Ashley's limitations are minimal at this point in her development. Just knowing that she has her mind and her mobility are huge to us. It is still discouraging to have so many Doctors involved and so many different opinions. Since CRS/SA is not very common, none of our Doctors have seen it in person and each person that has it can have very different medical conditions. That makes figuring exactly what her conditions and ailments are difficult.

Please pray for us on Friday, especially Ashley. She is such a good girl during all these visits. This is her version of normal. She hops right up on the scale and knows the drill for having her blood pressure taken (we call it a muscle hug). The barium enema is one of those not so comfy tests, so please pray that Ashley is calm and helps speed the test along.

Ashley loves the praise and worship song, "Hallelujah! (Your love is amazing)." Today on the way to the hospital for our visit she sat in her car seat belting out, "Hal-e-lu-la." It reminded me that even when life is happening around us we can still sing "Hallelujah, Your love is amazing" , even if we get the words wrong.

Lori

Summer fun

2008-06-16T13:01:00.004-04:00

All four kids are enjoying summer. Ashley loves having the older kids home with her. Since Scott is not here early in the morning, Ashley is used to me getting her out of bed. On the days that one of the other kids offer to get her up, she chooses to wait for mommy. Since summer has started, she wants to start the day running so the first person to appear at her door gets permission from her to free her from the crib. It is so cute!

Next week we are heading back to Miami Children's Hospital to see a new Gastroenterologist. This is the Doctor that will be doing the anorectal manometry. This test should tell the Doctors exactly what Ashley's bowel function is. Since we are at the usual potty training age, it is important to know what her abilities are going to be. The Urologist has confirmed she is incontinent and aside from a miracle, she will never have normal bladder function. We are hoping that she has some correct nerve placement in her intestines or that there is something that can be repaired.

We'll let you know how the appointment goes. For now, we continue with the daily bowel program and wait for the next set of instructions.

Have a great week!

Lori

One step forward, two steps back

2008-05-30T14:00:00.002-04:00

Open mouth, insert foot! I am so good at that. Just when I say life is slowing down we are back in the midst of new tests for Ashley.

Today we had a good visit with the GI Doctor. By "good visit," I mean he was patient and took a lot of time to explain the situation, possible treatments, etc.

In reviewing the letter from the Urologist about Ashley's neurogenic bladder and hearing my assessment of her weekly bowel habits, he thinks she has more bowel involvement that previously thought.

Without sharing too many details (Ashley will appreciate that when she is old enough to read this), she appears to have no feeling when she is preparing to pass a stool. When the Doctor previously examined her, he felt like she did have rectal muscle tone. Upon examining her today, he said the muscle tone is diminished and once he gets past a certain point she seems to feel nothing. This would explain why she never indicates when she has a BM, because she is unaware.

He stopped the current medication she takes to soften the stool and we are now starting a more serious bowel program. We will start with our first enema after her nap today. Then we are on to daily Milk of Magnesia. I have my instructions on how I can adjust both and we will see him again in two weeks.

In the mean time the Doctor is going to try and find a children's hospital that performs a test called, anorectal manometry. This is a test that will show if she does indeed have any feeling or rectal contractions. If she doesn't then he needs to decide if a pull through surgery will solve the problem or what route we need to take to take charge of her bowels, since they don't want to work right on their own. Apparently, this is not a common test. He was explaining how it is done so infrequently and is so costly that many hospitals just stopped doing them.

The Doctor said he may start her on a bowel program that requires a 20 minute enema daily. I know that Ashley is a trooper and she will do what is necessary, but I can't fathom how I will get her to do a 20 minute enema. We'll just have to see.

Pray for Ashley as we start this new bowel program. She is pretty backed up and he really has me hitting it hard to get a lot accomplished in the next 24 hours. Please also pray that he will have direction in where to send us for the test and the ability to find out the proper plan of treatment.

Lori

Waiting for some news

2008-05-29T13:00:00.002-04:00

I wanted to give you an update on the appointment with the Doctor in North Carolina. Today, I received a call from a Physicians Assistant in the Pediatric Urology office at Wake Forest University. These Urologists specialize in voiding dysfunction, pediatric incontinence, reconstructive surgery and regenerative medicine. The PA took Ashley's history over the phone and he is going to speak with all five Doctors and see if any of them think there is a reason to go there for a second opinion.

The trial study for increasing her bladder size using her own cells is done at Wake Forest, but that trial study is only open to kids ages three and up, with a specific diagnosis. Maybe later she can participate in this study, but for now we are hoping that maybe one of these specialists has an idea of some solution for Ashley's disability.

Please pray that if they can help we will be directed to the right Doctor and that the financial department will work the charges. I am waiting to hear back from our insurance, but at this time it looks like they won't cover an out of state visit. The good news is that she has had every possible test so none of those should need to be repeated at Wake Forest.

Thanks for the prayers.

Lori

Summer is here!

2008-05-27T09:37:00.003-04:00

Today is the kids first official day of summer! Yea! I really look forward to having them home all day. Although I may change my mind by 1:30 this afternoon. We'll have to see. Just kidding. I think that I have planned enough to keep them busy until at least Wednesday.

We went to the dollar store and the craft store and bought some crafts to keep them busy over the summer, we also do the fun things that are around our town. I just noticed yesterday that Pepsi cans have a free childs admission to a zoo not far from us so we will definitely hit that up a few times this summer. We also love to go to the Family Film Festival at a local movie theater. Every Tuesday and Wednesday they have FREE family movies. I think Ashley is old enough to sit through some of them this year. Last summer she wasn't interested in being contained for two hours.

I can always count on letting the kids "water" the grass for me to add to some fun outside. They love putting on their bathing suits and spraying any and everything (neighbors cars included). Our sprinklers are not working right now, so I bought one of those trusty sprinklers that you hook up to a hose. It works great except for the fact that I am far to lazy to turn it off every time I need to move it to a new section of grass. If my little ones aren't playing in it then I have to run out and navigate the current spray position and move it with out getting soaked in the process. I'm sure the neighbors enjoy watching me dodge the spray of the sprinkler.

Ashley is seeing the GI Doctor this week. Everything seems to be going okay. She has gone backwards and doesn't want to ever sit on the potty for her BMs. It really seems to me like she is totally unaware when they happen so if that is the case I can see why she doesn't find it interesting to sit there. For now, I'll just keep trying to talk it up. M & M's are always a hit with Ashley so those are a great reward.

We did hear back from the Urology office in North Carolina. They told me to talk to the financial department and confirm if our insurance will pay for an out of state visit. Hopefully I'll find time to call this week and check on that.

I hope you have a great week! I'll post on Friday after we see the Doctor.

Lori

Waiting for a call

2008-05-21T13:06:00.002-04:00

The waiting game continues. We found a group of Doctors at Wake Forest in North Carolina that specialize in pediatric incontinence. The Doctor I found also does regenerative medicine, which is where they use the patients healthy cells to form things in the body that aren't functioning properly.

We have a call into this office to see about going up there for a consultation. We are looking to find out if Ashley would ever be a candidate for an experimental procedure where they grow a healthy bladder in a lab then insert it into the patient. Because her issue is nerve related, it may not work. We also want to hear a second opinion about the long term treatment for her neurogenic bladder.

Pray that if they can see us our Insurance will cover an out of state visit. She recently had almost every test I can think they would want so that should cut down on what this office would need to do on her.

I'll post a message once we hear back from the office.

Lori

Life is slowing down

2008-05-15T21:25:00.002-04:00

It finally seems like life spent with multiple Doctor appointments is finally slowing down. Today, Ashley saw the Neurologist for a follow up. He said she is doing great. He was very pleased with how verbal she is. He gave me a better idea of what to look for if her syrinx (the fluid on her upper spine) starts to become a problem. He also mentioned that she has no leg reflexes, so I can make sure the Doctors know that. Some of the Doctors we have seen have tried and tried to get a reflex from her. Apparently, because of the spine issues she doesn't have them. Now they can stop beating on her knee. :)

The best news is that unless there is a change we don't have to see him again until November. It looks like this summer we just have to see the GI Doctor every few weeks and that is it!! Yea!!! The kids love when Ashley has to see him, since his office is across from Chuck E Cheese. Ashley has to repeat some of the tests she had done recently in October, so we are hoping to have a quiet few months.

We are still working on potty training her for bowel movements. The GI Doctor needs to determine if nerves are an issue with her bowels or if she is just a normal two year old. I'm really not sure what he does for that so we will cross that bridge when we get there. Luckily, Ashley has been super patient with all these Doctors poking at her. I tell her where we are going that day and for the most part she is cooperative with them.

Last night was our last Awana club and the big kids only have a few more days left in school. Summer is upon us. Have a great Memorial Day! I am anticipating nothing eventful for the next week (please, Lord) so I'll let you know what we find out after we see the GI Doctor.

Lori

One less Doctor

2008-05-08T12:56:00.002-04:00

I took Ashley to see the Cardiologist. After no nap and over an hour wait I was thrilled to hear them call her name. He was one of the few Doctors we have seen that has actually heard of her condition and seemed to know some specifics about it. That was encouraging.

The Cardiologist said she has a slight murmur, but the echocardiogram looks normal so we don't need to see him again!! Yea!!!! It is so exciting to be released from a Doctor.

Right now we have five specialists that she needs to continue to see. Three of them we will see at least every few months and the other two are just once a year unless something changes in her condition.

That is good news. I was wondering how I would keep up the pace of so many Doctor visits with the other three kids home for summer. Now it looks like we will just have the monthly visit with the GI Doctor and save the others for after summer.

Lori

Another Obstacle

2008-05-05T18:35:00.002-04:00

Upon the advise of Ashley's Urologist we saw the Neurosurgeon again today. Since the Urologist found last week that Ashley's plumbing (bladder, kidneys, etc.) are all in the right spot, he felt like maybe there was a possibility that she did indeed have a tethered spinal cord (a condition where the spinal cord becomes attached to the skin, through an opening in the bone). This is very common in kids with her condition because the bone of the spine is missing.

Anyhow, after my routine of searching the Internet and coming up with any possible question I could think of, we were off to the Doctor. This Doctor is the head of the pediatric neurosurgery department at a prominent children's hospital. I know that he knows his stuff, but he has a bad way of communicating it. Have you ever seen a Doctor like that? You either love the Doctor or love the staff, but never both. You either love the Doctor's knowledge or love his bedside manner, but rarely both. Sorry, I digress....he is fairly confident that although Ashley does have a symptom of a tethered cord (incontinence) her cord is in fact not tethered.

The MRI of the spine is where he gets his information. He did say you can never be 100% certain unless you do surgery and none of us are convinced enough to open up her spine. So....we are back to square one.

Because the lower portion of spine is missing, the nerves had no guide to know where they should go. He is not certain if her bladder and bowel nerves are routed wrong or don't exist at all. The fact remains that she is incontinent and unable to hold any urine on her own.

We took some studies that we found where a Doctor from China did a nerve re-wiring surgery on spina bifida children in Michigan. He had worked under this Chinese Doctor during his residency. The Neurosurgeon said, in May 2008 there is nothing that can be done for her, other than doing the bladder augmentation surgery when the Urologist feels it is time. He encouraged us to continue on with the research and to pursue medical studies like the one we found. He commented that in her lifetime maybe they will find a way to make a neurogenic bladder function.

The augmentation will allow her to be out of diapers, but she will need to be catheterized every few hours for the rest of her life. There are a lot of risks that are involved with this surgery since they are removing a portion of your bowel to form a larger bladder. The bowel will continue to make mucus even when it is part of another organ so she will have to be monitored and take a few medications to avoid complications.

We have 3 years until that would be done, so hopefully by then, someone has come up with a better solution for neurogenic bladders.

Tomorrow we have our final new patient appointment with a specialist. Because Caudal Regression Syndrome can affect so many parts of your body, we have had to see every kind of specialist. Ashley is seeing a Cardiologist to make sure she has no cardiac involvement. Hopefully that will be a routine appointment with no curve balls.

I am a do-er. I thrive on working and it is hard when the Lord tells me to slow down. It is frustrating to be diagnosed with something that can't be fixed. There is no medicine, surgery, chemo or treatment that will re-wire the way God made Ashley. No matter how much research I put in the notebook that goes from appointment to appointment with me and Ashley, there is only one person that can heal her.

This is the same lesson the Lord taught me after Tyler's death. For months, it felt like if I just did something or came up with a logical reason how his imminent death was over looked by Doctors just 24 hours before it happened, things would be different. We can't always make sense of what the Lord has for us. He knows the plan. I have my plan, but His is best, even when it hurts.

In the mean time, I focus on how the Lord has proven himself faithful during our trials! He is faithful! Can you imagine if we found out about this when Ashley was born (when most kids are diagnosed)? We would have had to deal with the death of Tyler and the disability of the surviving child. God showed us mercy by delaying her diagnosis.

I'll never forget in the first days after Ashley was diagnosed my parents discovered numerous articles that suggested terminating the pregnancy when diagnosed in utero. Obviously that would not have been an option for us, but I can't even imagine being faced with that suggestion.

The job trials of the past 15 months have been extremely hard on our family, but because of those trials, Scott has a job where he has wonderful benefits. We could have never been able to afford all the tests and visits she has had with our old insurance.

Looking at Ashley you would never know that her body is not perfectly formed. Scott and I read the stories of other kids with Caudal Regression Syndrome and we feel so blessed that she has experienced a fraction of the things they have gone through.

Although this is rare, I was able to almost immediately find a group of moms and a few adults that have CRS. It is such an encouragement to go to these women and get information on tests and results that many of them have already been through.

God is good...all the time!!! He will give us the patience and grace to go through the unknowns with Ashley. He will also give you the same thing during your trials. Scott and I are not poster children for mercy. Trust me, we are ready for someone else to learn the lesson. We have cried out "enough, Lord" many times. Even when we think we can't take anymore, He shows us that His grace is enough!

Lori

No Surgery...

2008-04-30T06:07:00.002-04:00

Ashley had her cystoscopy done. The Urologist found nothing that he could fix. Her ureters are planted correctly in her bladder. Therefore, the cause of her urinary problems are completely caused by nerve issues. So...we are heading back to the Neurosurgeon.

The Urologist wants the Neurosurgeon to evaluate the possibility of her having a tethered spinal cord. These bladder issues are a symptom of a tethered cord. The MRI of her spine done just two months ago seemed like it was not tethered, but he said sometimes you have to see a symptom that goes along with it.

For now, the plan is (per the Urologist) that she will have to stay in diapers until she is 5 or 6. At that time (after she has grown some more), she will have a major operation to augment her bladder and to close the neck of her bladder (which at this time remains open). After that she may be able to be out of the diapers, because she shouldn't leak, but we will then have to catherize her. The bladder will stay closed artificially, but the nerves aren't wired correctly to tell it to open when it is time to void.

The Urologist mentioned a study being done at Wake-Forest where they are growing human bladders and transplanting them into children with spina-bifida. We get most of our information from the Spina-Bifida Assocation, because it is the most closely related disorder. Scott and I were able to find some news stories that were done on this procedure and it looks hopeful. She would have to be three to apply, so we'll have to wait to evaluate this further.

Thanks again for your prayers. I had my mini meltdown yesterday and now it is on to caring for the family and helping Ashley adjust to her limitations. Please pray for her emotions are she gets older. She has a deep interest in "going potty." We are working with her and may even be able to train her for BMs, but the Doctor told us yesterday that she will never urinate normally. We'll just take it one day at a time.

Lori

Another Infection....

2008-04-23T13:28:00.002-04:00

The Urologist office wanted us to have a urine culture done on Ashley to make sure she is free from infection prior to her cystoscopy next week. The Pediatrician called today and she has a UTI. This isn't her first so I am not surprised, except after our visit with the Urologist last week he said that he feels her system is routed in a way that it would be unlikely for her to get a UTI.

The thing that started all these tests was two nasty UTIs that she got last year. Apparently she can get them and the fact that she has one now sort of makes me think all the times I have suspected one she may have actually had an infection.

I'm so relieved that we will hopefully have some answers in just a few days. Ashley will start an antibiotic today and they feel that she should be fine by next Tuesday to have general anesthesia. Please pray that this antibiotic kills the infection (we have had to test out a few in the past when the infection didn't go away) so we can proceed with the test and possible surgery on Tuesday.

Lori

Possible Surgery Date

2008-04-21T18:43:00.003-04:00

Ashley is scheduled to go to Miami Children's Hospital, next Tuesday (4/29) for her cystoscopy. If the Urologist finds something that he can repair, the surgery will be done right then. Today she had to have a urine culture done (via catheter, which she hates) and we will see the Pediatrician next Monday, for her pre-op appointment.

We are praying for the following:

That Ashely would stay healthy this week so going under anesthesia would not be an issue.
We are praying that the Urologist finds something he can repair. This would be the easiest way to give her a chance at some level of bladder function.

If the Urologist finds nothing that he can repair, then we will be sent back to the Neurosurgeon to decide if he wants to attempt some kind of neurosurgery.

Ashley is very interested in going potty. She is constantly having the ladies at church or her grandma's put her on the potty. Unfortunately, at this time there is no way she could successfully be potty trained. I found some helpful information on the Spina Bifida Association's website (SB is the closest disorder to Caudal Regression Syndrome) that another mom recommended to me. It suggests letting her wear pull ups and sitting her on the potty. Even though she won't be successful, she will socially feel like other kids her age.

You could pray for us as this situation unfolds. This is the beginning of Ashley dealing with being different from others. We are praying that we will know the right way to handle each of these situations as they arise.

We'll let you know how the procedure and possible surgery go next week.

Thanks again for your prayers!!

Ashley gets a manicure in her sister's homemade nail salon

Lori

Urologist Appointment

2008-04-16T11:49:00.004-04:00

Today we finally had our follow up with the Urologist to go over the results of the Urodynamics study. He confirmed that Ashley is incontinent. It was a confusing appointment and the more time we spent with the Doctor, the more it felt like he wanted to say nothing to us. He just kept telling us how rare her problems are. We left with a lot of unanswered questions, that I am not sure even our Doctor knows the answer to.

Here are the pressing issues that we know of now:

Ashley has the bladder capacity of a 10-week old fetus. Her bladder has simply never grown. Because of the tiny bladder, she can't hold any urine. This is why she constantly "leaks" urine. The Doctor is not sure if any urine is even being routed to her bladder.
Possible ectopic ureter - This means that the ureter (that carries urine) is draining into an incorrect location (maybe the urethra) instead of going to the bladder. This could help explain why her bladder capacity is small, no urine goes there so the bladder never has the opportunity to expand and release.
Bladder neck stays open-The neck of Ashley's bladder is not closed on any pictures from the study. This means, if urine is going through the bladder, it comes right out. A normal bladder and sphincter will close and release only when the brain tell the nerves it is time to void. If hers is never closing then this is another possible reason for the dribbling of urine. There are possible surgical interventions that can be done, but they do depend on her bladder size increasing and some other issues. He made it sound like any surgical intervention for this issue would be down the road.

At this point, the Urologist is not sure what is causing these rare abnormalities. They do go along with the Caudal Regression Syndrome diagnosis. He is going to do a cystoscopy in the OR in a few weeks. At that time he will know exactly where the ureters are placed and will have a little better first person view of her pelvic anatomy. If the ureters are ectopic (draining into an incorrect location) he will open her abdomen and place them into the bladder, right then. This is the best case scenario. He is very careful to say that even after fixing her ectopic ureters, she may still be incontinent, but this is the best scenario we are hoping for.

If he sees that her ureters are not ectopic and they are routed correctly to the bladder, then she has a Neurologically Impaired Bladder. This means her bladder function is abnormal because of the neurological defect with the spinal cord.

The Urologist would then have us go back to the Neurosurgeon and see if he would want to attempt any neurosurgery to try and give her some bladder function.

Again, we are up in the air with so many questions. They are hoping to get the cystoscopy scheduled within the next month, but it may be later since he needs to schedule possible OR time with it.

We feel like anything the Urologist can fix without having a Neurosurgeon involved is safer. It is scary to think about someone operating on your child's spinal cord. So many things can happen from the surgery alone.

Thank you for praying for us. We were well aware that urinary and bowel issues are most common with this diagnosis, but actually hearing the extent of the problems brings it all to a new reality.

Please pray that we would get an appointment soon to have the cystoscopy done. We are also praying that if it is the Lord's will, the Urologist would be able to do any repairs at the first surgery and that her bladder size and function would be normal.

Lori

Joy and Sorrow

2008-04-15T13:35:00.005-04:00

Yesterday, we had the funeral for Scott's dad. It was such a bitter-sweet day. We are heart broken over the loss of our father, father-in-law and grandpa, but at the same time we are thrilled that ten days before his death, he accepted the Lord.

We have all been very involved since Bob was diagnosed with cancer, just three short months ago. All our kids enjoyed spending time with him and I can thank him for getting my boys hooked on black and white war movies and game shows. The kids were around as we watched his physical body get weaker with each passing day and they were there just hours before he took his final breath.

In our society it seems abnormal for families to live close together. When my parents were growing up, all the family lived in the same area. We are so fortunate to have both sets of our parents nearby. It seems especially meaningful, after being able to spend day and night helping them in times of illness and death.

This morning, Ashley picked up a picture of Bob and asked "Where go Paw-Paw?" I said, "He's with Jesus!" To which she replied, "Mooommmmmmmm," and looked at me as if I was playing a trick on her.

It will probably be a while before Ashley understands why Paw-Paw isn't sitting in his usual spot on his couch, but we all know that he is in a better place worshipping our Lord!

Our visit with the Neurosurgeon

2008-03-27T16:10:00.002-04:00

Today we had the much anticipated visit with Ashley's Neurosurgeon. The plan was for him to tell us the results of the MRI that she had Monday of her brain and spine. The news was great!!! He doesn't see anything abnormal in her brain that would be causing the syrinx. That is often a concern with that type of condition.

They got a good look at the spinal cord and did confirm what they already knew. She is missing most of S2 (her Sacrum) and all of S3, S4 and S5 plus her tailbone. The Neurosurgeon said at this point it looks like her primary problems will be urinary and bowel.

We talked a little about the Urodynamics test she had done two weeks ago (a test that shows true bladder function, pressures, etc.) and he said that once we get the final report the Urologist will determine the course of treatment since it appears to be abnormal from the preliminary report we were given.

Unless she develops some neurologic symptoms (weakness in the extremeties, sensitivity, abnormal balance, etc.) that would indicate the syrinx has grown, we are to see him once a year and repeat the MRI every year to check on it.

This was a huge answer to prayer! We were very concerned that the MRI could show a far worse condition was the cause of her syrinx. The Neurosurgeon is not sure why it developed but said that since there is no evidence of Chiari malformation (a structural defect in the cerebellum) it looks like the syrinx can be watched for further growth and ignored for now!!!

We are so excited about this report! Ashley is seeing a GI Doctor every few weeks. He is trying to get her on a dose of medicine that will help with her bowel issues. Once we know where she stands urologically then he can proceed with more aggressive bowel intervention. Right now everything hinges on the Urologist report.

Thanks again for your prayers! The Lord has really given us a peace during the last two months as we have been on this roller coaster. We trust that he has Ashley's best planned for her and even if that doesn't match up with our will, He will guide us along. Now we have to try not to kick and scream as he guides us. That is a one day at a time task. :)

Thanks for your prayers

2008-03-24T22:33:00.002-04:00

Ashley finally had her MRI done today of her brain and spine. This was originally scheduled for six weeks ago, but she got sick then and this was the first appointment they had. We have prayed and prayed that she would stay healthy and she did.

This is the first true look the Doctors have had at her spine and the cyst of fluid that is on her upper spine. We are hoping that this will give us some good news that no surgery is needed at this time.

Because of the complexity of the test they warned us that she would need to be sedated for two to three hours. She was given her first dose of IV sedation and went to sleep pretty fast. During the test they administered five more doses to keep her asleep while they finished the pictures.

The technician came in and told us that they were almost done and we were 10 minutes away from the finish line. Yea!! Just then, two cute little feet started moving under a blanket and the nurses came rushing in. Ashley just woke right up.

Because she was having a brain MRI, she had what looked like a cage over her head. As soon as they pulled her out of the machine, she said, "Mama, I can't see." So pitiful. She had received the maximum dose of sedative they could give but since they weren't done the Radiologist ordered some Benadryl. Note to self, Benadryl has an adverse effect on little Ashley.

They were almost done with the pictures, but they really needed her to go back to sleep for 10 more minutes. She was having none of that. Eventually, they took her off the table and had me rock her, to no avail. We then moved back into the "sleep room" and tried getting her back to sleep there. No luck. She was hungry and thirsty and ticked off that we would not let her down to walk around.

The nurse finally said that we would just head to recovery and let her sleep it off there. They didn't think it was likely that she would go into deep enough sleep to finish the test. So, after a long day and an even longer afternoon in recovery we are done with the dreaded MRI.

We see the Neurosurgeon Thursday to get the results. We are hoping and praying that the pictures they did get of the brain were sufficient for him to make an assessment. If not, they said we would have to go back and finish the pictures of the brain that were not completed.

We are still waiting for the results of the Urodynamics study. She is having increasing urinary problems so we are growing frustrated with the wait, but we hope to have those results by the end of this week.

Our kids are on spring break and we have appointments with Ashley almost every day. This is a big week for her results but we are working in fun time with the family. They thought it was funny that when we got home with Ashley she couldn't walk at all without falling. The six doses of sedative and Benadryl finally kicked in. Kayla gave her a lesson in crawling again and that seemed to help her feel free to move on her own. She was sick of being held. :)

Thanks for all your prayers. We feel so blessed to have so many people praying for us.

Love,

Scott & Lori

Another Test Done!

2008-03-13T16:43:00.002-04:00

Today my mom and I took Ashley to a hospital in Miami for a Urodynamics Study. This is a comprehensive test that gives the most detailed information on how the bladder is working. I had never been to this hospital, so I was nervous about an unfamiliar test in an unfamiliar setting. The hospital was beautiful and the staff was even better!!

We met the two nurses that would be performing the test and within minutes Ashley was perched up on a chair at the nurse's desk looking at a fish tank. Once she realized that this particular test meant being catherized she decided she was ready to leave.

The nurses were wonderful and before we knew it, they had all the pictures they needed. The nurse did tell us that her bladder is very small. It is just a little bigger than a newborn bladder. We will have to speak to the Urologist to hear exactly what his plan is, but the nurse told us that after he, "fixed her bladder" we would be having this Urodynamic Study done routinely.

When we found out about her Caudal Regression Syndrome, we prayed for urinary and bowel problems (which are more common in her type of Sacral Agenesis) instead of mobility problems. I guess the Lord heard our prayer.

Thanks for your prayers for her test today. She was a trooper and we are so pleased with how everything went. Please pray that we hear from the Doctor sooner, rather than later. It seems like one appointment with her turns into another appointment before we get answers. Many of you know that I am not patient. :)

Keep praying!

Lori

A great report!

2008-03-03T22:47:00.003-05:00

Today, I took Ashley for her first visit with the Orthopedic Doctor. He took an x-ray of her pelvis and spine. He thinks she actually only has S1 and a portion of S2 (if you don't understand what that means, you missed a previous class...um, I mean post on the sacrum). The MRI that is being done later this month will confirm exactly what portion she does or does not have.

Anyhow, he said that because she has such great mobility he would expect that to stay the same. He feels that her ability to walk is coming from S1 and since that appears to be there she should always have the mobility that she has today. He will follow up with her once a year to make sure that her pelvis and hips are adjusting ok to the growth with part of her base missing.

That is a great report! Today was a super busy day with appointments (and a great lunch with old friends - friends from our past....not "old") so we haven't had time until tonight to really absorb what that means.

When we first read about her condition everything pointed to a wheelchair if not amputation and we were terrified at that possibility. It appears that unless something drastic changes, she will be able to avoid those types of problems!!!

We have two more tests to do later this month and a follow up with the Neurosurgeon. Considering where we were just a few weeks ago, we really feel blessed with the news we have been hearing.

Thanks for all your prayers. We'll keep you updated after her next set of tests.

More tests.....

2008-02-20T21:04:00.002-05:00

Thank you to all of you that have been praying for Ashley. She is doing great. Well, she was doing great even before we knew that there was a problem.

The medicine the GI Doctor gave her still doesn't agree with her. When we go see him next week he may change that. We have had success with her using the potty for BMs. I can't beleive it, but he was right and the sitting position does seem to help her.

The Urologist called this week and he wants her to have a Urodynamics Study done. This test will show exactly how her bladder functions. We have to go to Baptist Hospital in Kendall in a couple of weeks for that test. It won't be fun for Ashley because they have to catherize her to perform the test and the poor baby absolutley hates that. Hopefully it will be quick and she will have other things to occupy her mind.

It feels like we are seeing Doctors or having tests done every week. I think once all the Specialists have their baselines then things will settle down. As soon as all these tests are done they will know which direction to head.

We are still praying specifically that the syrinx on her spine is small enough on the MRI in March to avoid surgery.

Thanks for being such great friends!

What is God's Will for my Life?

2008-02-17T22:10:00.003-05:00

My parents are the founders of, Rejoice Marriage Ministries. They minister to thousands of people each day that are facing separation and divoce with their devotionals. These men and women that are drawing a line in the sand for the healing of their marriages are my heroes. Every once in a while I get the chance to write a devotional for them. God is constantly teaching me so much, even when it hurts. I hope you enjoy this devotional I wrote.

I bet that title caught your attention! Guess what, I know the answer.

My husband and I have been married for over twelve years. We have been blessed with 5 children; one is waiting for us in Heaven. For the last few years I have had the opportunity to be a stay-at-home mom, with the honor of working part-time for Rejoice Marriage Ministries.

We have always wanted God’s will for our lives. Sometimes His will was easier to see than others. After our first set of twins was born (did I mention we had two sets of twins?), I continued to work a full time job. After the birth of our third child, we really felt the Lord prompting me to come home and be a full-time mom.

This was a hard decision. I loved my job and couldn’t imagine not getting up everyday to go there. My husband was a Realtor and had no base salary, it was 100% commission. How were we going to pay our bills?

We followed the Lord’s prompting and I quit my job. My first full day home with 19 month old twins and a 3 month old was not all I thought it would be. I thought the days that followed would be filled with walks in the park, nice cuddle sessions on the couch reading a book to my sweet babies and quiet time for me while they napped.

Those of you with kids know that I was delusional. Shortly after I began my new venture, all three kids got the stomach flu. I need not go further into details for you to appreciate the fun I had for days while that passed through the house.

Guess what? I was right where the Lord wanted me! It was difficult for me to transfer my friendships from the co-workers that I had to finding other moms like me that were home with their kids. Everyone I knew worked outside their home. I continually prayed that the Lord would bring other godly women into my life that would help me become a better wife and mom.

The Lord was faithful and He did just that. Soon, I woke up everyday thanking God that I had the privilege to stay home with my family. My husband’s business picked up and he was able to make enough to cover the loss of my income and benefits. God was faithful to our obedience.

Fast forward seven years and here we are again at one of those major cross roads. The real estate market in South Florida, like many other regions, has slowed and there is not much business out there.

We had to decide if the Lord wanted Scott to pursue another career, a temporary job or what He was asking us to do. Scott and I have spent hours on our face (literally) crying out to the Lord for Him to show us His will.

Do you ever feel like screaming, “I’ll do it – whatever – just show me what you want,” to the Lord? We have. The last two years have been hard. We gave birth to twins, Ashley and Tyler, only to have to bury Tyler a few days later after he died from an umbilical cord accident, we have lost a job and are now facing a life long medical diagnosis with our baby, Ashley.

During all of this we have discovered what the Lord’s will is. Do you want to know?

“Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom. And we, who with unveiled faces all reflect the Lord’s glory, are being transformed into his likeness with ever-increasing glory, which comes from the Lord, who is the Spirit.”

2 Corinthians 3:17-18

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose. For those God foreknew he also predestined to be conformed to the likeness of his Son, that he might be the firstborn among many brothers.”

Romans 8:28-29

He wants us to be conformed to His likeness! God isn’t a fairy tale, happy the entire time person. He is a just God. I am more like Christ today because of what our family has been through in the last two years. It has been hard and we have shed many tears over the trials, but if I never would have gone through them, I would have never been able to see God’s faithful hand at work.

I would love to say that this year will be the year that my heart stops hurting over the loss of our son, the real estate market would bounce back and Scott could go back to the job he loved so much and Ashley would have an MRI done and the Doctors would stand in amazement over her healing. That is all possible, but it simply may not be God’s will.

If none of that happens, it is okay. So long as we are in God’s will. He knows what lies ahead for each of us. That may mean that your husband or wife will come home tomorrow or in three years, but if they don’t, is that going to cause you to give up your stand?

The Lord wants us to obey. He has told us what His desire is, to be conformed to His likeness. That means during the good times and the bad.

Many of you are standing for marriages that seem hopeless on the surface. Your stand is more about your obedience than whether or not your spouse ever comes home. We need to take each day as it comes and determine today that I will do what the Lord needs of me to be conformed to His likeness.

Are you more like Christ because of your trials? Do you have a deeper knowledge of His word? Have you seen Him move in ways you never thought possible? If you had not gone through these marriage trials, you may have never been able to see that.

We feel blessed that God picked us to show his mercy and grace. I don’t want to be a routine Christian. I want to explode with gratitude for what He does for me, even when the valley seems to be more than I can handle.

Thank the Lord today for the things that He has shown you during this valley in your marriage. Go share those with someone. We have confided in a small handful of friends about the trials we have faced over the last two years. Those were friends that offered up prayers instead of advice and friends that encouraged us, when we felt like we couldn’t face another day.

If you don’t have friends like that, pray that the Lord will send you one. Until then, tell it all to Jesus. He is the best friend you could ever ask for and through our difficulties we become more like Him.

After all, that is the goal!

Snotty nose and coughs........

2008-02-13T13:40:00.002-05:00

Well, last night, when I was sitting at the desk working I heard a seal noise coming from Ashley's bedroom. Since I was pretty sure that none of the kids had slipped an unwelcome animal past us, I figured she was getting croup.

Unfortunately, that meant that she definitely could not have her MRI. She needs to be healthy to be sedated.

They didn't have any openings until the end of March, so we will have to wait until then to have a good look at her spine.

It looks like for the first time in several weeks, we don't have a Doctors appointment for two whole weeks! Yippppeeeeee!!!

Doctors....Doctors.....Doctors

2008-02-12T20:20:00.000-05:00

Ashley saw her next specialist today. It was a GI Doctor. He was very nice and said that as of today, she seems to have minimal bowel problems as a result of the sacral agenesis. That was great news! He put her on a medicine to help with bowel movements and said I should start trying to have her sit on the potty when she appears to be ready for action - know what I mean? :)

She is going to see him again in two weeks and see how the medicine is working. He is also going to keep an eye on her weight and make sure that her being so small is from being a preemie and nothing else.

We are scheduled for the MRI tomorrow of her brian and spine. This will give the Neurosurgeon the information he needs about the fluid on her spine.

She woke up today with a lot of nasal congestion and unless that goes away they can't do the MRI. They have to sedate her and if she is showing any signs of illness it is too risky. We are praying that she is better in the morning. We were so lucky to get a quick appointment and I would hate to have to reschedule.

Neurosurgeon Update

2008-02-05T08:36:00.000-05:00

We saw the Neurosurgeon yesterday. He is the head of Neurosurgery for Joe Dimaggio Children's Hospital, so we felt confident that he knows what he is talking about.

It was yet another appointment where we walked away with more questions. Basically, he said there is nothing that can be done about the missing spine. "It is what it is," is what he kept saying. They don't insert a rod or prosthetic, you just do without. He also said that the future will be treating the problems that arise from the lack of bones, which he thinks should be primarily urinary and bowel.

He explained the different functions that each section of the lower spine does and he feels that she is walking because most of her leg control is probably coming from S2, which is the last portion of spine that she has. That is an answer to prayer, because although he couldn't speculate much, he feels like she shouldn't lose mobility in the future. He thinks she may stay like she is now.

He wants her to have another MRI done of her brain and spine. The first MRI was looking at the kidneys and didn't give him the best view of what is going on with her neurologically and with her spine. He also said that the syrinx (fluid on her spine) has nothing to do with the sacral agenesis (missing spine). It is just a coincidence that she developed two spinal abnormalities.

The syrinx is the main concern right now, because he needs to determine if it is something that needs surgical intervention or if he should just watch it and see if it grows. That is what the next MRI should show him. Right now, he can't see it well enough to determine the size or exact placement on her spine. He was very cautious to answer most of our questions, with "let's see what the MRI shows."

The Neurosurgeon suggested that her Urologist do a urodynamic study, this will show them how her bladder is functioning with the job it is supposed to be doing. They aren't sure if she is incontinent, since she is still in diapers. If this shows incontinence, then they will deal with that before it becomes a bigger problem.

The Gastrointerologist will have to do the same thing. Assess her bowel function and determine if the nerve placement has caused any bowel incontinence.

Overall, we feel better than we did before. Hopefully the new MRI won't show any other complications that they aren't aware of now. We are also praying that the syrinx will be small enough to avoid surgical intervention.

This seems to be such a confusing situation with so many extra areas that need treatment. I hope I explained it so you can understand. Scott and I feel like we are becoming spine experts after all that we have read in the past two weeks.

On another note, it is so encouraging to know that even when we have a huge question mark hanging over our head, the Lord is always there with the answer. On the way to the Doctor, we spotted a friend of mine that I grew up with and haven't seen in years. I rolled down the window and said "are you off to lunch?" to which she replied, "I am taking my son to an orthopedic surgeon."

Scott and I immediately looked at each other in amazement of the information you can get at a traffic light. One of the specialists Ashley has been told to see is an Orthopedic Doctor that specializes in spines. The one that was originally recommended is not taking new patients so we weren't sure what to do. For now, we were just avoiding that problem and dealing with the other specialists they want her to see.

I called this friend on her cell phone and told her what was going on. She was seeing this Doctor for the first time. I asked her if she would mind writing down Ashley's diagnosis and asking him if he has ever treated it before and if he would be willing to take on a spine patient. Guess what? She called me last night and said that he has seen this problem before and would love to treat her case. God is so faithful in His timing!!!

Thanks for all your prayers. We are rejoicing over the way the Lord has seen us through these last two weeks. We have made such progress with appointments with Doctors that are usually hard to see and although we still can't get anyone to nail down what the future holds, we are confident that with the brilliant medical care that is available and the Lord's guidance, we will all have the strength to deal with the issues that will come before us.

For those of you that have asked, thank you for your prayers for Scott's Dad. He had his carotid surgery yesterday. Early yesterday evening, he had a slight stroke following his surgery. This is a common complication of the surgery. The surgeon was right on top of things and within one hour had done two tests to determine the presence of blood clots and was ready to take him back to the OR.

They determined that he did not need another surgery and they put him in ICU to monitor the progress. The Doctors were hoping that he would regain the movement he lost during the night. Right now, my mother-in-law has still not heard how the night went, but hopefully it got better and not worse.

Sorry this post is so long. I keep trying to find a short way to spell it out, but I don't think there is one.

Thanks again for you love and prayers. We feel so blessed to have such great friends and family!!

Scott and Lori

2008-01-31T08:39:00.000-05:00

http://www.youtube.com/user/luanneyarrow

Each Wednesday night all four of our kids attend Awana at our church. They memorize scriptures and sing songs. Ashley loves to go to song time. This girl knows how to worship!

2008-01-30T10:49:00.001-05:00

CHHHEEEESSSSSEEEE!!!!
I don't know what the future holds for little Ashley, but we know WHO holds that future! Ashley is so perfect and happy today! She loves to worship. Each week in Awana, she sings and does the motions to every song. She doesn't understand the words she is singing, but I know in time she will.

One of our kids was having a hard time understanding her diagnosis. Because her twin brother died, this child thought that may also happen to Ashley. It is so reassuring to know that even if Ashley has to undergo surgeries or devices to help her have a better quality of life, she will always be the spunky Ashley that we love.

Neurologist Visit

2008-01-25T21:12:00.000-05:00

First of all thank you so much for your prayers. We definitely feel like the Lord has calmed us down over these past two days.

We were able to see the Pediatric Neurologist today. For those of you that didn't hear, I called for an appointment and they said it is usually a 4-6 week wait, while I was on the phone someone called and canceled an appt. for today. Is God so good or what???

Anyhow, he was a very nice Doctor and he spent about 1 hr. and 45 minutes with us. He did a complete neurological exam on Ashley and tried to explain her condition. He can't say much, because he said in 40 years of practice he hasn't treated it. He confirmed that she is missing the bottom 3 portions of her spine (called the sacrum) and her entire tail bone never formed. He said it is just a very rare condition and it is hard to say what the future holds with her growth still to come.

He said she is going to have to be treated by a Neurosurgeon and an Orthopedic Doctor that specializes in spine deformities. She will also need to be under the care of her Urologist and a GI Doctor as this condition effects the bladder and bowels. The Neurologist thought the Neurosurgeon may have more to offer as far as the future. It is a tricky thing that they really have to wait and see what happens as she grows.

For now, there is a specific and pressing issue. This is a complex problem and it is hard to simplify it, but she has a portion of her upper spine that is filled with fluid (apparently the spine is normally solid), if this fluid area grows then she will develop mobility issues in her legs because it will be pressing on nerves. If that happens they would have to do surgery on her spine to relieve the fluid.

The Neurologist said the Neurosurgeon will tell us more about that when we see him. He said that it could stay that way for a while or grow. They just don't know. They will monitor it through MRIs and us watching for mobility issues.

Aside from one area of decreased reflexes the Neurologist said Ashley had a completely perfect neuro exam. That is great news! He said he will research this more and speak with other Doctors and we will follow up with him in a few months after seeing the other specialists.

I did ask about how this was missed on all the Level 2 ultrasounds I had done (since I had a twin pregnancy) and he said that he thinks nobody would have picked it up. He said, it is just something rare that is in textbooks and you don't see in person.

For now, our specific prayer needs in this area are:

1. We are praying that this "syrinx" on her spine will not fill with any more fluid and grow. Right now, it appears to not be causing any harm so we want it to stay that way.

2. We are praying that the Neurosurgeon or the Orhtopedic Doctor will know someone in the Nation that specializes in this condition. The Doctor today said there is probably someone out there that knows a lot about it. If we can find that person, then we will have a better idea of the progression.

Thank you again for your prayers!!

Scott & Lori

Ashley's Diagnosis

2008-01-25T21:10:00.000-05:00

Well, most of you know that Ashley had an MRI done yesterday to determine if she had a kidney problem. She has suffered with a few recurrent UTIs since last year and her Pediatrician and Urologist wanted to see if an ectopic ureter was possibly the cause.

We received a call tonight that she did not have any ureter problems, but they did find that she has "Sacral Agenesis." According to some information we found, this is defined as "a very uncommon disorder (congenital deformity of the sacral area) the lower part of the back, just above the tailbone." The lower portion of Ashley's spine is missing. There are usually 5 areas (S1-S5), well S3, S4 and S5 never developed on her.

We are still trying to wrap our heads around this. I was in Target when the Doctor's office called and it just caught me off guard. She will need to see a Neurologist and find out a treatment plan. This is a disorder that happened around the first - second month of pregnancy. The spine did not form properly.

There is no cure, because the bone is simply missing, but you have to treat the symptoms and complications that arise from not having that part of your spine. That is why she is getting UTIs, " it is also characterized by bowel problems, nerve issues with your spinal cord, deformity in hips, legs, knees, sometimes to the extent of requiring a wheelchair or amputation to achieve a better quality of life."

As you can imagine our heads are spinning. The last two years have been the hardest of our life and this is adding another layer to that. As she continues to grow, the problems will manifest more. For now, we are to figure out which neurologist to see and we will be speaking to the Urologist personally tomorrow (his nurse had the pleasure of giving this news - very unprofessional in my opinion) to find out the course of treatment to help with the UTIs.

Once we can come out of the clouds and figure out what all this means we will let you know. For now, we are just trying to do as much research as we can to understand this disorder.

Please keep us in your thoughts and prayers.

Scott and Lori