Today was a full day of appointments for Kaitlyn at DuPont Children’s Hospital. We started the morning at Urology with Dr. Figuroa to follow up from our visit to Cincinnati Children’s Hospital back in December. Since Kaitlyn has been successful with her new Bowel Management routine, she would be a good candidate for a MACE procedure.

The MACE would allow her enemas to be delivered through her belly button and give her the independence of doing them herself. The surgery involves using the appendix to create an opening from the large intestine to the umbilical (belly button). Since Kaitlyn also has a Neurogenic Bladder, we discussed the possibility that she will need to have surgery for bladder continence (Mitrofanoff), which should be done at the same time as the bowel surgery so that the appendix can be shared for both openings. Before making this decision, another VCUG will be done in June under sedation to determine the condition of her bladder. They will be checking for pressures and anatomy. The last VCUG in 2010 showed good pressures but she still leaks between caths. If a Mitrofanoff is done, the urethra is tightened to  prevent urine leakage, but the bladder needs to be large enough to handle the capacity (Bladder Augmentation)

This is a lot more information then we expected today going into the appointment. We thought her bladder would be OK to handle this procedure. If bladder augmentation is necessary, then recovery time could be up to 2 weeks in the hospital. There is also her age to consider. The best window for this to be done is between the ages of 5&7, so she is in the optimal window now.

We have to take this one step at a time though. We get the VCUG first, then get second and third opinions from CHOP, Cincinnati, maybe others.

After Urology we saw Dr. O’Conner in Ortho. Her X-Ray’s show her scoliosis is at 17%, not clear if that is an increase from last year or not, but not something they were concerned with now. They were very happy with her strength and improvements in gait.

Next was Dr. Haas in Spinal Rehab. We discussed preliminary results from Kaitlyn Psychological evaluation, in which they identified her issues with staying focused on tasks. She may qualify for additional support in the classroom to keep her on task when she enters kindergarten.

We ended our day with Dr. Campbell in Neurosurgery. Over the last 6 months Kaitlyn has complained of intermittent pain in her right thigh. He ordered an MRI of her spine in June to coordinate with Kaitlyn’s VCUG. He will be checking the size of her Syrinx to see if it has grown, which could put pressure on the nerves and cause pain. We then went to X-RAY to get pictures of her legs to see if anything appears to be causing an issue.

Kaitlyn did great today considering all of the doctors we had to see, and she was exhausted by the time we left. Kaitlyn is just amazing especially with what she has to deal with on a daily basis. Thank you for your continued prayers and I will try to update this blog more often about her appointments.

Yesterday, Kaitlyn had her semi-annual MRI to check for any issues with her spinal cord, in particular the growth of a syrinx which has been present since birth as a result of her tethered spinal cord. In December, her scans showed a significant growth of the syrinx and had us concerned that she may have re-tethered. Yesterday’s scan showed the syrinx actually decreased 20-30%! Dr. Campbell said he does not see this very often but it does happen. We are so relieved and thank you to everyone that has been praying for her!

We also met with Dr. Haas from the Spinal Dysfunction clinic about her Bowel Program. Since we have been having trouble with her current bowel management we asked for suggestions on changing things up. Kaitlyn can now swallow pills, so she will be taking colace pills 2x a day, sennacot at lunch, and a suppository after dinner. We are hoping this provides us with more consistency and predictability.

Let me just also say that Kaitlyn was such a trooper through the whole day. It seemed like forever before the anesthesia wore off completely and she was able to walk without falling… she kept trying to get up and walk and we had to pull every trick out of the hat to keep her sitting in the wagon or on our laps. At one point she fell asleep in the wagon out of sheer exhaustion. We treated her to a happy meal on the way home .

(Definition of Syringomyelia)
Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.

Dylan finally cut her first tooth! Its about time because she is 10 months old!

Kaitlyn Celebrated her 3rd birthday at Ms. Sally’s playplace in Berlin. She has such a blast! We bought her a new digital camera and she has a blast taking photos. I cant wait to load them on the computer and see what my little photo bug has taken!

Well the x-ray did not show any blockage in the colon or intestines so we can pull back on the massive doses of laxatives and try to get her back normal again. Thats good news. The report said something about excess flesh (???) near the bladder somewhere and the pediatrition now wants an Ultrasound. We are waiting for a second opinion from Dupont because they may interpret the report a different way, but we are taking her for the Ultrasound in the morning reguardless.

I also think it may be worthwile to switch her to a more natural method of bowel control involving acidophilus and aloe water as suggested by some friends and my chiropractor. I think it’s worth a shot.

So it’s been over a week now and Kaitlyn has yet to make a decent BM. We increased her Miralax to 1 capfull every 4 hours and 5cc of senna 2x a day. Her BM is watery and piecey… today I am really starting to wonder if it’s not a blockage and just something else going on but her stomach is so distended… I asked Ron to call this morning and ask for an Ultrasound or an Xray to see if they can visually see an issue. She had an xray last week to check her scoliosis so he is also going to ask them to look at those films. I’ll post an update when I know more.

We started the day with a consult with PT (Jason). He had Kaitlyn run up and down the hallway while he observed her gait and fluidity. He basically said she is speed walking and not running because she is not flexing her foot enough to push off the ground. Her strength and tone are very good. He was impressed by her in general and said she is doing great.

Next we met with Dr. Haas to discuss her bowel management program. She suggested some changes that may help us to better control when she goes.

We then went to Urology to get the Urodynamic study and follow up with the urologist Dr. Figueroa. Her bladder pressures were great and her capacity was 120cc. This is an improvement from the summer.

We ended our day with a consultation with Dr. Campbell. There is concern over her neurological function because a fluid filled mass on her spine grew 1mm since the last MRI. He was waiting for the results of the UDS before making a recommendation. Since the UDS showed her bladder looked good and there are no other symptoms such as increased falling or problems walking he recommended the we rescan in 6 months and go from there.

Toward the end of the appointment I brought to his attention that Kaitlyn’s midsection seemed shifted to the left. He sent us to XRay which confirmed that she had mild scoliosis (13%). We will follow up in 6 months with another X-ray to check that it’s not getting worse.

 All-in-all I am happy that her bladder is looking healthy. We are to continue cathing her 4-5 times a day and 3cc of Ditropan 2x daily. Her Syrinx growth is still going to haunt me because it’s not over yet. Essentially we must wait until she shows external signs of neurological damage before considering surgery. I am thrilled we do not have to worry about surgery for another 6 months but I fear that it’s imminent in the future regardless.