AVERY'S JOURNEY

We returned from Philly on Friday last week with Avery's new leapard print braces. She lovingly calls them her grrrr braces. They are UCBL which are very short braces that are basically inserts that go into her shoes. The first few days she did not like them because they do not offer her near as much support as her AFOs (her old braces). She had trouble walking in them and kept falling and she was asking for her old "bear braces". After we got home and she was able to practice a little more she began to adjust. She is still not as steady in them but she is doing better. She also got a new dorsiflexion AFO which she will wear at night. Dr. vB released her from wearing her KAFO since we have not gained any more flexion on her knee (we have been stuck at 90 degrees forever). He also released her from wearing the dorsiflexion AFO at night on her right foot. We don't have to go back to Philly for four months. Yes four whole months. I think that is the longest stretch we've had!!! We are just praying, praying, praying, that the UCBLs will hold her foot in the correct position and prevent her foot from regressing.

We met up with some friends on our trip this time at the hospital and at the Ronald McDonald House.

Now to the lost tube... About a month ago when we returned from Philly I noticed some ear wax in Avery's ear, which she never has had since she had her tubes in place, so we called her ENT and they told us to flush her ear with white vinegar and water, which we did and all seemed well. Until a last week when Avery's ear starting oozing puss (gross). So to the doctor we went. Well we actually had to see the nurse practitioner who said Avery had an ear infection and possibly had lost her tube, but couldn't really see because there was too much puss. Last week Monday, before we flew out we got into Avery doctor and he confirmed that Avery's tube had in fact fallen out. He said there was still quite a bit fluid in her ear and that he would like to see the tube put back in, but it would be up to Avery's ENT. So...January 4 we will be going of U of M to see the ENT to discuss whether the tube needs to be replaced or not.

Here's some pictures from our recent trip.. you can see more in the photo gallery.

We returned from Philly last week.  We received some great news from our trip.  Avery received another set of hip x-rays.  The head of her hip is continuing to calcify and the other great news is that the shape that it is forming has improved  since her last set of x-rays just 3 months ago.  Dr. vB stated that if her hip continues to improve we may be able to avoid the surgery that we thought she was going to need  

Avery also got fitted for some new braces while we were there. Dr. vB is going trying her with some shorter braces(ucbl orthotics) . I'm a little worried w/ how they'll work because they will only go up just below her ankle.  He said it will be a transition for her so she will still wear her AFO's for a little while until she gets used to the smaller braces.  He also fitted her for a new dorsiflexion brace for her left foot and he is contemplating on taking her out of her KAFO.

When we left for Philly we had concerns that Avery would come back in casts because her left foot has continued to turn back in.  Dr. vB  said if her foot maintains he will not put her in casts, but if it turns any more she will have to go back into casts. He did say he will probably have to do something surgical to her heal when she gets older..but for now it's okay.  So we are praying that her foot stays put and does not turn in any more.

We will return to Philly in a month (December 3rd) to pick up Avery's new braces, which by the way, are leopard print w/ purple straps....picked out completely by Avery.

Our trip to Cincinnati was a busy one. But it was definitely worthwhile because we got some answers.  We were able to stay at the beautiful Ronald McDonald House in Cincinnati. 

We started our trip driving to Cincy last Wednesday.  Thursday was a busy day at we spent most of the day at Cincinnati Children's Hospital.  Avery had all of her tests for urology scheduled on this day.  She started the day with a renal ultrasound followed with labwork, a formal urodynamic study and a VCUG.  Some of the tests especially the last two were somewhat invasive and required a catheter, filling and emptying her bladder under x-ray.  Avery was not very happy, but she was a trooper and held still so that no sedation was required.  We saw Dr. DeFoor the urologist on Friday.  After reviewing Avery's tests he stated that he does not believe that Avery currently had a neurogenic bladder, but that there is a possibility that she may be developing one and he wants to follow up in six months and repeat the ultrasound to see how her bladder is looking.

We were able to get into the Ronald McDonald House on Friday.  The house is beautiful and HUGE.  The house gave us free tickets to the Newport Aquarium in Kentucky (just across the bridge).  So on Saturday we went to the aquarium.  The Hospital gave us free tickets to the Cincinnati Zoo, so on Sunday we went there.

On Monday Avery had a water soluble enema (formerly barium enema).  We also saw Dr Kaul, the GI doctor.  Dr. Kaul was great and had a lot of knowledge about arthrogryposis as well as GI issue, which of course is why we were there.  Dr. Kaul informed us that according to the test, Avery has a redundant colon, which means that her colon has an extra loop in it.  This by itself usually does not cause many issues, besides some occasional constipation.  Dr. Kaul went on to explain because of the fact that Avery has arthrogryposis and has decreased muscle mass and tone, especially in her lower extremities and her stomach in addition to her redundant colon, this is what is causing her constipation.  He also explained that she will probably have to be on a somewhat high dose of laxative long term.  After discussing what her previous GI doctor had put her on (Miralax and wanted to try to wean her off) and also discussing the fact that Avery does not drink her laxative at one sitting, he decided to change her laxative to Milk of Magnesia daily and to also try Fletcher's Senna once a week.  Dr. Kaul also suggested that her primary physician either do a physical exam or x-ray every 2-3 months to make sure that she is emptying her colon.  He explained that it is very important we make sure that she is emptying everything because if she is not things could get stretched out and that's when there could be issues.  They attempted to completed another test (anorectal monometry) on Tuesday, but were not able because Avery was too backed up and even after two enema's had not emptied everything.  We will following up with Dr. Kaul in 6 months. 

So overall is was a succesfull trip and we gained some useful information.  We will be headed to Philly/NYC on November  1st .

We had our appointment  with Avery's pediatrician on September 24 to discuss the reason why he had denied a referral to Cincinnati Children's Hospital . We were shocked by the unprofessional behavior as well as hearing some unethical comments from the doctor. As soon as he came in the room, he barely made eye contact with us. He informed us that he could not do any more referrals for us because it was costing him too much money. When we questioned him on how this could be costing him money, he stated that it costs his office too much money to copy Avery’s records and fax them to other hospitals. He also stated that it is a waste of his staff’s time. How can a doctor say this? A doctor is supposed to take care of his patients and help them find the proper care. Isn’t this exactly what he and his staff get paid for?

He went on to say that we, as parents were never satisfied with Avery’s care. He suggested that we give up searching for better more experienced doctors and to remain with the doctors that we have. I will just give a few examples here… We initially attempted to receive treatment locally. We stayed with this (local) doctor until Avery was 15 months old. We saw no progress and the doctor broke her Tibia (foot) and Femur (leg) during treatment…would you be satisfied? Another example… the reason why were asking for the referral to Cincinnati Children’s Hospital is because we had recently gone to the University of Michigan to see a Urologist. When he came into the room he could not even pronounce Arthrogryposis and asked us to explain to him what this condition meant. How can we trust a doctor to care for our child when he can even pronounce her condition? This is why Avery’s geneticist and neurologist had strongly suggested we get a second opinion with other doctors who are familiar with her condition. We want the very best care for our daughter, so should her doctor and sometimes that means not being satisfied.

During this meeting with the doctor, he raised his voice to the point of yelling several times. He slammed Avery’s file on the table. All this while Avery, who is 2 years old, was present in the room. He obviously knew that his behavior was inappropriate because when we left the room, the doctor's nurse was out the hallway and we heard him apologize to her.

This is a doctor who denied a referral and then could not take the time even call to discuss why until he returned from his vacation, which he wasn’t leaving for until the following week. He based this decision based on what he considered to be “too many” previous referral, the fact that it was costing him too much money and because it was a waste of time for him and his staff. When making this decision he never took into consideration the health and well being of our daughter. His behavior during our meeting was deplorable. By raising his voice, yelling and slamming the file on the table, all in the presence of our daughter he showed us how unprofessional he truly is.

We obviously are no longer with this doctor and had Avery's file along with Dexter and Tatum's file transferred the following day.  They are now with our family doctor.

Avery will be going to Cincinnati Children's Hospital October 15th  through the 20th for testing and to see two doctors, a GI doctor and a urology doctor.  We found a way around the referral from Avery's primary physician who we are scheduled to meet with next week to discuss our plans and to discuss the reason why he denied the referral.

While we are in Cincinnati Avery is going to see two doctors. Dr. Ajay Kaul (GI) and Dr. Shumyle Alam (urology).   On October 15th Avery will spend the day completing the urology tests which include, a kidney ultrasound, labs, a urodynamic study and VCUG.  The following day on the 16th we will se the urologist.  Then on Monday we will see Dr. Kaul the GI doctor and on Tuesday Avery will undergo GI testing which will include  Water Soluble Contrast Enema (formerly Barium Enema) and an Anorectal Monometry

Both of these doctors have experience treating kids with arthrogryposis, so maybe they will come up with something that will help us.

We may also be headed to Philly sooner than planned.  I e-mailed Dr. vB pictures of Avery's foot and my concerns that it is turning back already so we are looking at possibly bumping up her appointment so that she can be fitted for new orthotics rather than be put in back into casts (again).  We've also decided after discussing it with Dr. vB that we are going to have Jessica in NY make Avery's braces again since she's done such a great job previously.

Avery's first day of school was last week Thursday. We actually had to go Tuesday to complete her IEP and she went to meet her teacher...she was so scared that I was going to leave her that when she was walking in her walker she was walking so close to me that she clipped my heal (ouch!). Dexter and Tatum actually had school on Tuesday so when she saw they had their backpacks and I was taking their pictures, she wanted to join the fun.

Tuesday when we dropped her off she held onto me and wouldn't let go and started to cry, but the teacher took her to the window to wave and by the time we got outside to wave to her she had stopped crying. I called the teacher about 15 minutes later to check on her and she said she hadn't cried since. She took the bus home and I thought for sure that she would be freaked out by the bus ride, but when the bus pulled up...here comes Avery walking down the aisle of the bus with the aide and a big ole' smile ...no sign of tears anywhere.

Avery goes to school at an ECSE (Early Child Special Education) program. She will go twice a week Tuesday and Thursday 8:30- 11:40 and will also receive PT and speech at school, but no more therapy at home. I'm still going to bring her to a private therapy clinic for PT and OT. Her class has 11 kids with one teacher and two aides.

Avery finally got her  wheelchair on Friday.  The whole process took almost six months and it actually came a little late because she really needed when she was in her cast to help keep her mobile.   But at least we finally have it.  We only plan on having her use for long distant trips because we don't want her to become reliant on it since she is wanting to walk so much.  We figured we will use it in place of her stroller and then it will give her some independence.

She hopped right in and started rolling around and steering around the house like a pro.  She gets this little smirk on her face and thinks she's pretty cool in her pink wheelchair.

Back from Philly and Avery is without her cast.  Her foot looks okay....not great.  Unfortunately just within a few short days since the cast has come off we have seen her foot turning slightly inward.  Dr. vB had a few small adjustments made to her braces to help try to keep her foot her in the correct position,but admitted that her foot is just a tight and stubborn foot.  The good news is we don't have to go back for 2 months!!  November 2nd is her next appointment and he plans to have her fitted for new braces.  We are still decided whether we want her braces made at Shriner's, where they are still having some issues with the orthotics department or go back to NY and have Jessica make them.  Jessica is Dr. vB's old orthitist and she is amazing and has made Avery's last two sets of braces and we have not had any problems with them.

We've had some unexpected news from Avery's pediatrician.  We called his office to ask for a referral to Cincinnati Children's Hospital for Avery to go see a GI doctor and Urologist and he denied the referral.  The receptionist was copying some of Avery's paperwork for us to send to the hospital and when I went to pick it up I asked to speak to the nurse who had spoken to the doctor see why he denied the referral and she stated he said " it was an unreasonable request because he had already done multiple out of state referrals and it was a non-emergency and it would have to wait until he returned from vacation in three weeks" .In actuality we've only asked for one out of state referral, Dr. vB and since he was practicing in NY as a team at that time, we were connected with a geneticist and neurologist at that hospital and now Dr. vB is in Philly so we've chosen to follow him, but stick with the other doctors in NY .

Avery's pediatrician is usually so helpful and easy to work with. I don't understand where this is coming from and I don't know where to go and he won't even talk with us over the phone and so we've scheduled an appointment to see him, but it's not until 3 weeks away. So we initially thought we had to have a referral from her primary physician, but I think we may have found a way around it,  we should find out next week if we can make an appointment.

Here's a few pictures from our recent trip to Philly

Avery in the SpongeBob                                    The play room

room @ RMDH                                              @ Shriner's

Why can't doctors just tell you when they are over their heads and won't be able to give you the answers you need?  Why do they have to pretend to know what they are doing, instead of saying they should refer you to another colleague who might be better suited?

We went to the University of Michigan today to see a urologist for Avery.  It was a complete waste of time, insurance, resources and everything else.

First let me explain why we went there.  Avery's neurologist and geneticist in NY had suggested that we go see a urologist to have Avery checked for a neurogenic bladder (basically a bladder that does not fill and empty properly due to some type of nerve problem).  They still are uncertain the cause of Avery's arthrogryposis and uncertain of why she is having difficulty lifting her left leg and dragging her right.  They are wondering if there may be a link to those issues along with her GI issues (constipation) and so they wanted to have her checked to make sure her bladder and kidneys do not show any problems and if they did they wondered if there might be a link with her arthrogryposis and possibly some type of nerve damage.

Well...we knew we were in trouble when the doctor came in and couldn't even pronounce arthrogryposis.  Now, I don't expect every doctor to know everything about arthrogryposis, especially since it isn't this doctors specialty.  But, I do expect a doctor to be educated enough to be able to pronounce it correctly and I do expect a doctor to have enough respect for a patient to take 5 minutes before a visit to grab a medical encyclopedia and look up a condition/disorder or heck he could of even googled it just to get some basic background information. 

He came running in.  Asked one question (after we explained to him what arthrogryposis is) .  Felt Avery's stomach.  He said he wanted Avery to have a couple of tests.  Then wrote the tests down and told us to bring the paper to the front desk and he would see us back in his office after the tests.  So we went out to the front desk and the receptionist got on the phone and then she said...."How does December work for you?".  Greg and I were in shock.  We thought we were going to get the tests done today and go back to see the doctor to talk to him more.  Which we told the receptionist and she said, no there are no openings for the tests until December. 

So,  needless to say...we will not be going back to his office.  It was the worst doctors appointment we've experienced (and we've had alot).  We had done some research prior to seeing this doctor and actually had contact with a doctor's office in Cincinnati, Ohio, so we are going to do a little more research, but we may be taking Avery there.

Avery's been blessed to have two wonderful therapist that we see at a private therapy clinic, Generation Care, once a week.  Even though Avery is doing alot of work during her therapy sessions they make it fun for her and mask it with games so it doesn't seem quite so bad.  She receives OT (occupational therapy) and PT (physical therapy).  In a few short weeks she will be starting school at the ECSE (Early Child Special Education) program.  She will be going twice week and during her time there she will also be receiving physical therapy and speech therapy ontop of the therapy she receives from Generation Care.  The physical therapist that will be working with her at the school is the same PT who has been working with her through Early On doing PT in our home since Avery was around 9 months old and she is also wonderful.  Here are a few pictures of Avery's PT and OT sessions at Generation Care.  Her OT is Tammi and her PT is Jen.

        Avery and Tammi                                   Avery and Jen