Waiting for a call

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

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

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

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...

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....

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

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