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