I thought it would be nice to put a journal of our experiences as Ayla is getting older now. Hopefully all the entries will be good ones! Since Ayla was born, we've lived several places. She was born in Florida where we were until 2001 and then traveled out to Colorado where I thought the climate would be better for Ayla. This journal carries us from the start in Florida, to Colorado, New Hampshire and finally Massachussetts where we live today.

February 13, 2002: After finally getting settled into the Colorado Springs area, Ayla got her first appointment at Denver Childrens Hospital, where we saw several doctors at the Spinal Defect Clinic. We were a bit overwhelmed with how progressive they were, but I was also very impressed. Ayla will be getting a new wheelchair, and a para-aide (like the one that's on the page about her and I) that will enable her to stand and move by herself. Ayla will also be having surgery on April 25th. She will be having a bilateral hip flexion release, that will give her greater flexibilty in her hips, bring her hips into proper alignment, and release some of the contractures that are increasing the curvature of her spine. Afterwards, she will wear a body cast for three weeks while she is healing. Please light a candle for her as we slowly approach her surgery date. Thank you.

March 6, 2002: Ayla had her CT Scan w/Contrast this morning and went through it like a champ. *smiles*

March 22, 2002: Drove to Wheat Ridge today for Ayla's Urodynamics Test; which went really well. The Doc seems to feel that Ayla's bladder is not in any danger at this time, although precautionary measures are still being taken. Good news!

April 26, 2002: We are finally home after spending one and a half days at Denver Children's Hospital. Ayla came through the surgery really well. The x-rays showed that her hips are now in alignment and the curvature in her spine has even lessened some. With the exception of a hip spica cast (body brace with leg bar reinforcement); which doesn't give Ayla any mobilty at all while she is healing for the next three weeks, she is in relatively little to no pain. Now the test will be how creative I can be in keeping her mind and hands busy and make this time in her cast go by quickly. Thank you all who lit a candle and/or who said a prayer.

May 20, 2002: Wow! The body cast has finally come off! We were finally able to celebrate Ayla's sixth birthday at Chuck E. Cheese, even though it was five days after her birthday. She also got to go back to school for the last week before summer vacation starts. Ayla will be having physical therapy as well as wear a body brace every night until she goes back to see the Doctor in July; but she is a much happier camper since she can move around again. It's slow going though, her muscles need to regain their strength for her to have the mobility that she had prior to the surgery.

July 8, 2002: Ayla has finally received the okay from her Orthopedic to start weight bearing excercises with the help from her afo's, para aide and walker. You can see a picture of her up and standing with it on the page about her and I. We anxiously await her new wheelchair now!

July 17, 2002: Hurray!!! The new wheelchair has finally arrived! It is much smaller and much easier for Ayla to manipulate the wheels and control. She is a very happy camper these days. *grins*

December 5, 2002: Long time no updates right? I do apologize for that. Ayla and I moved from Colorado to New Hampshire. Ayla is now involved with the Spina Bifida clinic at Dartmouth Medical Center and has even worked up to wearing her TLS (Thoracic, Lumbar, Sacral)Brace for up to three hours a day which seems to help with her posture quite a bit. She receives PT and OT twice a week while at school and is in her para aide stander an hour at a time while at school; which increases bone density through the weight bearing.

March 14, 2003: Another year and yet another moves finds us now in Springfield, Massachusetts. Hopefully this will be the last move for awhile. As Ayla was going to be seen at Dartmouth Medical Center for some follow up work to see how the curvature of her spine is progressing; she will now be seen at Shriners Hospital within the next few months to have all of that follow up work done. One of the concerns for her is getting her TLS Brace adjusted once more as she is going through a growth spurt. This growth spurt also means that she is more inclined to get tethered chord syndrome sooner than later. X-rays and a visit to the orthopedic specialist will tell if that's happening and when it might occur so that we can make the decision for surgery to relieve the TCS. In the meantime, we wait and see.

April 16, 2003: We finally got our assessment at Shriners and they've agreed to accept Ayla into their Mylo and Orthopedic clinics, where she will have all of her neurological and orthopedic needs addressed. Our first clinic is on the 25th where they will do a complete workup and find out how much she's changed and what her needs are now. The nurses were very helpful and even gave us the name of a Pediatrician that they recommend.

April 21, 2003: Ayla met her Pediatrician today and he, along with his staff, got us hooked up with medical supplies and medication that Ayla needs on a daily basis.

April 25, 2003: Our first clinic at Shriners. Wow..talk about overwhelming. Shriners is a wonderful hospital and their very knoweldgeable and helpful staff are great. There are so many doctors there and they really take the time to find out exactly what your child's needs are and what your concerns are. The orthopedic doctor wants to get some x-rays taken of her spine to see how much further the curve has progressed since her last x-ray. We'll come back next month for that to be done.

May 5, 2003: Back to Shriners today for x-rays of Ayla's spine. We saw Dr. Mack and he also wants a bladder and renal ultrasound which will check her kidneys and bladder to make sure that everything is okay there. The x-rays showed that Ayla's curve has progressed more, but Dr. Mack still feels that because Ayla's spine is so flexible still and has not gone rigid that there is no need to operate at this time and that she would benefit from having a suspension brace to wear during the daytime while at school. We then went over to Orthopedics where she was measured for the brace. We also had to go up to the Physical Therapy department and have them take a look at Ayla's chair so that the chair could be modified for the suspension brace. We would need to come back on the 21st for the modifications to be made.

May 21, 2003: We head to the Physical Therapy Department so that Ayla can have her wheelchair modified for the suspension brace that is being made. While we are there Dr. Mack finds us and lets us know that the suspension brace is also ready and he's scheduled an MRI for Ayla on the 30th, a VCUG test on June 2nd, a Bladder and Renal Ultrasound for June 9th, and a Urodynamics study in July. It just seems like there are so many appointments, one right after the other. I know they are needed so that they can have a baseline to go by; but it gets very tiring sometimes. After a few hours of being at Shriners we had the suspension brace and the newly modified wheelchair.

May 30, 2003: Ayla and I go to Bay State Medical Center where the MRI will be performed. All of the necessary precautions have been taken and she sails through the MRI without even a sedative, holding completely still while listening to music from various Disney movies in a headset they provided for her. The technicians were all very impressed with her.

June 2, 2003: Ayla and I head to Bay State Medical Center today for her VCUG appointment. They need to fill her bladder and watch it on this monitor to see if there is any reflux (where the urine is drawn back up into the bladder once she voids; essentially looking for if any urine is retained and she doesn't void completely). She did fine with the appointment as I assisted the doctor with the catheterization once the test was completed. There doesn't seem to be any reflux at all and she does void completely, although it takes awhile.

June 9, 2003: We head back to Bay State Medical Center once more for her Bladder and Renal Ultrasound. Everything came out fine, with one kidney being slightly larger than the other, but that's normal enough. No cause for alarm.

July 7, 2003: Finally a little bit of a break, for we didn't have another appointment until today. The Urodynamics study will be done right at Shriners. This test will show how much pressure is being put on the bladder walls as the bladder is being filled. There was a minor change in the pressure level which prompted the Urologist to increase her meds that she takes three times a day. It was nothing of great concern, but there would be side effects to look out for which I noticed almost immediately. One of the main side effects of the Ditropan that she takes three times a day is that she won't sweat; which of course is the body's way of cooling down. Therefore, she must make sure that she drinks plenty of water on hot days to stay hydrated and stay out of direct heat in the sun and wear a hat when out in the sun. The chances of her getting overheated/heat stroke is more now, so necessary precautions need to be taken during the hotter months. At least now..with this last test done, we get a break as the natural routine of clinic visits sets in.

August 22, 2003: Mylo clinic at Shriners today. Dr. Mack likes how all the tests look and is pleased with how well the suspension brace is working out for Ayla. He also would like to see her in her stander more often and orders some new AFO's to be made to brace her legs below the knees while she's standing. We head over to the Orthodics department and Ayla gets measured for the AFO's.

August 29, 2003: One quick stop at Shriners to pick up her new AFO's as well as have the suspension brace checked out and make any necessary adjustments.

September 15, 2003: Ayla gets her physical with Dr. Binder and we find out that she now weighs 36 pounds and is 44 inches tall! He does suggest that Ayla start taking a multivitamin with iron in it and perscribes just that. All in all, a clean bill of health as Ayla heads into 2nd Grade.

October 8, 2003: Clinic at Shriners again. Everything is going well. Dr. Mack is confering with the Neurologist to determine if in fact Ayla has tethered chord syndrome. It is common about this age as children tend to go through a growth spurt between the ages of seven and eight. It certainly would explain the pull on her spine more and increasing the curve. However; as Dr. Mack says, her spine is still very flexible and so there is no need for surgery at this time to correct the curve. Of course, she will be watched at each clinic and her condition monitored to see if any vital organs are affected due to the scoliosis. I know that most doctors like to prolong the spinal fusion operation until the child has reached maturity and the chances of any more growth spurts is unlikely. Roughly around the age of fourteen.

November 21, 2003: Clinic at Shriners. The usual height, weight measurements. Ayla seems to be fluctuating between 36 and 38 pounds; which for her seems about right. Most children with spina bifida seem to be small in stature. One of the things to watch for is their weight; because of their lack of mobility, they can tend to put on weight which could present more health problems down the road. Ayla does not seem to have that problem at all, for which I am grateful.

December 8, 2003: Woohooo, the last appointment of the year!! Ayla got the works though. Went to clinic and saw the orthopedic specialist and the Physical Therapist where she had a muscle test done. See ya next year!

January 13, 2004: A new year finds our appointments getting further apart now and not so many of them either. Now that the doctors have got all of their baselines done and their assessments made, they can create the maintenance part of Ayla's progress. Ayla did have clinic today at Shriners and everything is going very well. Our next appointment isn't until the end of May, so it will be nice to have a break for awhile.

May 12, 2004: A little emergency today.....while at school and while she was going up an incline (nobody was behind her), Ayla tipped backwards, fell all the way back and hit her head on the concrete incline. Ouchies!!! She had quite an egg on her head according to the school nurse and after speaking to her pediatrician; I went and picked Ayla up from school and off to the ER we went, JUST to have things checked out and to make sure that nothing was going on. My main concern was any concussion of course, and the secondary concern was because she does have a shunt in her head and anytime there is a head injury and a shunt is in place; it's a good idea to have the head checked. The doctor on staff did not feel it was necessary to do a CAT scan or anything like that; so we breathed a sigh of relief and went home. I kept her home the following two days for observation just for my own piece of mind.

May 21, 2004: Went to Shriners today after our little mishap (see Our Journal for full story). Shriners was kind enough to see us sooner in clinic to get Ayla checked over and make sure everything was going well with her medically and then over to O & P to get fitted for a new TSL brace and then upstairs to PT to get the measurements taken for another wheelchair. It is fortunate that Shriners works closely with Burke Medical Equipment and so it is very possible that a new chair will soon be in the works for her. Woohoooo on that.

May 25, 2004: An unexpected phone call leads us back to Shriners. It seems that the mold they took for Ayla's new brace was not up to snuff, so they requested that we come back in to have another mold done; this time with plaster, instead of the fiberglass that was used last week. Also, on the same day, it was arranged that the rep from Burke Medical Equipment would be there as well fitting another child for a wheelchair and since we were going to be there, why not stay a bit longer and get all of the numbers down and forms filled out? So, we did. The quickest that he said she would have a chair like the one that was stolen would be about 2 months; 3 months being the average though. Until then, we will make do with the loaner chair that Shriners had given to us for the apartment. Ideally, having two wheelchairs is best, given that we live on the third floor and keeping one up in the apartment that she uses a few hours in the evening and on weekends and then her daily use wheelchair while at school and when we go out is kept downstairs in the back of the car makes perfect sense. Our next appointment won't be until the first week of June when her new brace will be ready for fitting.

June, 2004: Ayla finally got her new brace. It seems like she's growing like a weed, yet she is so tiny. She only weighs about 38 pounds. Children..they do grow up fast don't they?

September 10, 2004: We were called to Shriners today. Ayla's new wheelchair is in and they want to make any necessary adjustments to it while she is in it. A few minor adjustments to the foot plate, the seat strap and the bar across the back for her brace to hook onto and we were good to go.

December 17, 2004: Shriners clinic appointment today. Ayla's weight remains around the same still. She's a bit of a picky eater but does get all of the nutrients that she needs. An appointment is set up for us to speak to a nutrionist however after the first of the year. Ayla has some muscle testing done on her lower extremities and I bring up the issue of whether or not she would benefit from more PT and possibly walking with the aid of braces and a walker. Dr. Mack checks her out and doesn't see any reason why it wouldn't be worth a try; she does have enough trunk strength and there is mobility in her right leg. He agrees that Ayla will be measured for an RGO; which stands for reciprocating gait orthodic. It's essentially leg braces which she can wear underneath her clothes and along with her other brace. It will allow her to "walk" with a reverse placed walker, if I'm understanding the doctor correctly. They will need to mold her for the braces and then they will work closely with her for two weeks in the PT department and help her get used to the motion of the RGO and how it will work properly. She is really excited to be upright more and it looks really positive.

January 20, 2005: Today we went to Shriners to get Ayla molded for her RGO, to see the Nutritionist, and to see the Physical Therapist. The Nutrionist gave me a suggestion of getting Carnation Instant Breakfast for Ayla in the morning since we rarely have time to eat before she heads off to school and she told me that by the time she gets to school on the bus, she doesn't have long to eat and feels rushed. The Nutrionist feels that Ayla will get additional vitamins and calories that she might be missing out on by not eating enough breakfast. The Physical Therapist gave Ayla some "tools" to help her get herself dressed easier. A long shoe horn type device for getting on her shoes, another long pole device with a curved hook on the end for putting on her pants and a bendable long handled sponge for bath time.

February 18, 2005: Ayla has been experiencing some headaches. She told me that she's been having them off and on since Christmas. She is also complaining of stiff joints; especially in her right leg around the knee. We get an appointment right away at Shriners where x-rays of her head (shunt series) are done. The doctor didn't feel that Ayla's knee was a problem, just some cartiledge that moved across the patella; kind of like when your knuckles crack. After viewing the x-rays though he told me that he could only see part of the tubing for Ayla's shunt and not the continuation of it within the ventricals. A CT scan was then scheduled for that evening at BayState Medical Center and an appointment is made for us to see Dr. Kalia, the Neurosurgeon the following Tuesday. That afternoon, we went to BayState Medical Center and Ayla had a CT scan, it was compared to the previous scan that was done in November of 2003 and the technician who performed the scan said that there were no changes from the previous one. I was relieved.

February 22, 2005: Ayla has continued to have headaches off and on. One day I even kept her home because she said that her head hurt so bad. She has felt sick to her stomach only a few times, but didn't throw up. This afternoon we saw Dr. Kalia, the Neurosurgeon. I wasn't alarmed because the technician told me that there were no changes in her scan from the previous one. Boy was I in for a shock. Dr. Kalia took one look at her scan and explained what it was I was seeing and asked me if I saw any of the tubing inside the ventrical. I could not. It was his opinion that seeing what he was seeing, that this shunt was not working and had not been working efficiently in quite some time. He compared it to a slow draining tub. While the tub will drain eventually, it will drain very slowly; thereby leaving water standing in the tub for a long period of time. My question is, what damage is being done to the brain with this fluid that's been sitting there and should have been drained doing? I was kind of in shock as I heard him tell me all of this. I couldn't believe that no other doctor caught this. I couldn't believe that this had been going on for some time. It would explain the problems that she's been having in school retaining information, recalling information and learning things. It would explain her headaches and occasional blurred vision. What permanent damage had been done because of this oversight? He request prior CT scans for the past few years to compare to this most recent scan. I was able to get the scan that was done in 2003 as well as 2002 which was done out in Colorado. I was able to have them fed ex the CT scan overnight to his office and pick up the 2003 scan from Shriners for the doctor to look at.

February 25, 2005: Ayla's RGO is ready at Shriners but with everything that is going on right now, I've postponed getting that until we clear this up. The Neurosurgeon called me today and said it was as he suspected. The scans are exactly the same, which means that the shunt has not been working as it should since 2002. It is my conclusion however that the doctor from Colorado was neglectful or dismissed the scan because Ayla was not experiencing any profound symptoms that are telltale signs of a malfunctioning shunt. An appointment is scheduled to get a second opinion which this Neurosurgeon requested that I do with a Neurosurgeon at Boston Children's Hospital for March 16. That seems too long to wait when you are anxious about your child and what's going on.

March 8, 2005: Ayla has stayed home again due to some nausea and irregular bowel movements. I call her regular pediatrician and get an appoinmtent to bring her in and have her checked. I mention the occasional blurred vision and was told that Ayla should see an Opthamologist to have her eyes checked. That appointment gets scheduled for April 5.

March 16, 2005: The day is finally here!!! Went to Boston Children's Hospital and saw the Neurosurgeon there. She spoke to both Ayla and myself and asked alot of questions and took the time to answer all of my questions as well. I had a list!! She told me that every child with a shunt is different and will display different symptoms when the shunt malfunctions. There is a wide range of symptoms, from the very severe to the not so noticeable. The problem with the not so noticeable symptoms is they can be passed off or confused with other things going on. They are slow to build up and while the body is trying very hard to work with the symptoms that are slowly building up and is trying to compensate in order to function properly. There comes a point where the brink is reached, where the body can no longer compensate for what's going on. This is what's happened with Ayla. Her symptoms have been slowly building up for the past three years and now....her body can no longer function properly with this malfunctioning shunt and it seems as though alot of medical things are happening all at once. Had the doctor in Colorado took a closer look at the CT scan, and her shunt had been revised three years ago; Ayla wouldn't be having the problems she's having today; both physically and learning ability. When I mentioned the occasional blurred vision and told her when the Opthamologist appointment was, she said that she really didn't want to wait till April 5 to get the results of that eye exam and asked that I call them, explain the situation and ask if Ayla could be seen sooner. Her concern was if there is fluid behind the eye, building up pressure, that if it isn't relieved soon after discovering it, she could lose her vision. Her findings were exactly the same as the other Neurosurgeon and she did agree that Ayla does in fact need a working shunt and should get the operation to have the shunt revised. She offered to do the surgery there at Children's Hospital or I could have it done elsewhere. It was my choice. I would speak to the Neurosurgeon in Springfield first. After getting home from seeing the Neurosurgeon in Boston I called the Opthamologist's office and was able to reschedule Ayla's appointment for March 23. I also called the Neurosurgeons office here in Springfield and they told me to come into the office on March 29 so that the doctor could go over the report from Boston and explain the procedure to me. My preference is to have the surgery done at Boston Children's Hospital based on the fact that that's all they work on there is children.

March 23, 2005: Ayla and I go to the Opthamologist appointment. Ayla's eyes check out fine. We were told that the occasional blurriness might not have anything to do with the shunt problem she is having. There is also no build up of fluid behind the eye which is a good thing. However; he also said that just because there is no fluid behind the eye doesn't mean that there isn't pressure behind the eye. So, that was good news and confusing news. I thought finding out there was no fluid build up behind the eye would be the end of that. Not necessarily so.

March 29, 2005: Ayla and I see the Neurosurgeon in Springfield where we live. He was quite short with me and I wasn't pleased with his demeanor. He basically told me that I needed to make a decision where I wanted to have the surgery done and who I wanted doing it. Hmmm...well why couldnt he just tell me that over the phone? That afternoon, I did call the Neurosurgeon in Boston and schedule Ayla's surgery. She has a preop appointment on April 7 and then her surgery will be on April 11. I am relieved to finally have set the date and have this done. Ayla was upset after seeing the Neurosurgeon, so we talked about why she was upset when we got home and she seemed to calm down.

"To love for the sake of being loved is
human, but to love for the sake of loving
is angelic."
-Alphonse de Lamartine