Scoliosis and Spina Bifida - yeah, this sucks!!!

I went into this past week knowing that it could hold a lot.  2 major appointments - the hand surgeon and the orthopaedic specialist.  I wanted to think that I (and Jordan) would just breeze right through it and come out on the other side unscathed.  Unfortunately, I found myself feeling hopeful, but ended up pretty mangled by the time I hit the weekend.

The appointment with the hand surgeon went very well.  For the first time in 4 visits, they did not do x-rays.  I was thankful because that was usually what got Jordan upset and anxious during previous visits.  That, along with the fact that the doctor seemed to take forever to come in and see us.  However, he was very quick and we only waited a few minutes before we were able to discuss where Jordan was.  I explained that she has been finding alternative ways to do things - holding a marker/crayon, opening something, pulling up her pants, taking off her socks, etc.  I also told him that there are certain things that she just can't do without the ability to squeeze something with her thumb providing counter pressure - opening some doorknobs, opening some containers, picking up small objects, etc.  

Jordan allowed Dr. Kuz to examine her thumb and he indicated that the weakness was multi-directional and that she definitely would benefit from having it reconstructed.  He explained how he would reconstruct her thumb.  Basically, he needs to increase the web space, stabilize the joint, strengthen the thumb, and then fill in the missing tissue.  Sounds simple enough.  But then the real work begins.  Jordan will be in a cast for 5 weeks following surgery and I need to ensure that she is very careful with her arm/hand during this time.  I wish I could just say this will be easy, but since Jordan's temper tantrums often result in hitting - people, walls, tables, floors...whatever is close by, I can't really guarantee that it will never get "bumped."  

Original post about Jordan's first hand surgeon appointment

We did not schedule the surgery at that time because I wanted to see what the next appointment would bring.  Also, Derrick and I needed to discuss the best time to have this done (when do we want Jordan to spend 5 weeks in a cast followed by physical therapy.)  We are looking to have it done this winter - we are thinking just after the first of the year.

Waiting for Dr. Cassidy

On to appointment #2.  We were going to see pediatric orthopaedics because last spring I had noticed that Jordan's shoulders were uneven - one was higher than the other.  She also began seeing the chiropractor and the x-rays showed a slight curve in her back.  The x-rays done confirmed that the curve was 12 degrees which categorized them as scoliosis.  After looking more closely at the x-rays he also noticed that the top vertabre looked unusual.  He zoomed in and saw that they were not fully connected and said that it was considered spina bifida.

wow.
2 major diagnoses within a matter of minutes.

The doctor pulled up the MRI Jordan had done in June, 2008 and evaluated that as well.  He said the that MRI does show that area and he would review it in further detail.  He was able to rule out significant problems with the spinal column and chairi malformation.  He said there was not much to do now, but that if her curve were to progress to more than 20 degrees, we would need to start treating it.  He also suggested we possibly consider another MRI in a year or so to compare.  

I was not happy with the idea of doing nothing so I asked if Jordan's hypotonic cerebral palsy could be part of the problem with the scoliosis.  After all, if her muscles are extremely loose, wouln't it make sense that they couldn't hold her spine straight?  He said that it could help her to strengthen her core and that her neck could use some stretching as well.  He wrote a script for them and told us to come back in a year to follow up.

I must have been in shock for the first day because I never really thought about what this could mean.  Then after talking with Derrick that night and some of his concerns were expressed, I started to process the reality of it's impact on her life and ultimately, ours.

Then I got online and started to research.  That's when it hit me, scoliosis is the first degenerative medical diagnosis that Jordan has received.  Her cerebral palsy won't get worse, her dysphagia (swallowing) won't get worse, her apraxia (speech) won't get worse, her thumb hypoplasia won't get worse...scoliosis has the potential to cause her significant pain and could continue to get worse throughout her entire life.

Jordan's actual type is called kyphoscoliosis.  This means that her curvature is not just side-to-side, but also front to back.  I have found that the primary age for onset is 10-15 years old so that Jordan is 5-10 years ahead of that average and has a longer time to progress.  Also, her would probably be considered neuromuscular scoliosis because of her underlying cerebral palsy.  Unfortunately, this type often progresses more rapidly and often requires surgery. 

Once scoliosis reaches 20-25 degrees braces are used to stop and hopefully correct the curvature of the spine.  Unfortunately, my research has not shown them to be highly effective.  This lead me to research some of the other "alternative" forms of treatment.  I have found some that I will continue to look into as I am not in a desperate situation right now.  Surgery is not performed until the curve reaches at least 40 degrees and consists of rods and spinal fusion.  Not something I want to see her go through.

I have also found a great website that a girl who has scoliosis has created to help others who are facing the same challenges.  Her story is amazing and I love when I come across someone who has embraced their differences and work to help others!!  Check it out: My Scoliosis Story.    This gives me hope that Jordan could have a positive attitude, but is still more than I want her to have to face.

I know Jordan is an incredibly determined, strong-willed and beautiful child.  Unfortunately, she has no idea what she is up against...yet.  I am sure that as she gets older and when things get hard and as the pain in her neck/back increases, she will be forced to gain a better understanding of what is happening to her body.  I know she is a blessing and I treasure her beyond words, but it breaks my heart to think of what she may endure.  

For right now, I am seeking the physical therapy that may help her to strengthen her muscles and hold her spine in place.  I talked with Jordan's teacher and I am waiting for her to contact the physical therapist and discuss therapy options during school.  Depending on what they can work out, we will decide if we want to pursue outside PT as well.

I have spent the past few days wondering if God has put too much trust in me.  I know He isn't supposed to give me more than I can handle, but what if I don't want what He has given me?  What if I don't want my daughter to have to face any more challenges?  Especially ones that will only get worse!!  

I want to be strong.  
I want to have faith.  
I want to trust.  
But right now I hurt...and I hope that's okay.

Summer 2012 = Tests, Evaluations, and Therapy

I have spent the majority of my summer going from one appointment to another....mostly for Jordan.  She has had the following average weekly schedule - 

     Monday - Feeding Therapy

     Tuesday -  Psychologist / Speech Therapy

     Wednesday - Chiropractor

     Thursday - Speech Therapy

     Friday -

This does not include my 2nd chiropractor appt. every week, Conner's therapy appt. every other week and any extra doctor appts./evaluations (about 1-3 per week) or anything else that might come up in our schedule (swimming lessons, etc).  We have averaged 8 appointments every week!!!  This has kept me in a whirlwind all summer and unable to even go grocery shopping several weeks this summer (thank goodness for our Savings Angel stockpile of food and supplies!!!)

Jordan had an Upper GI done in mid-June.  This was done because Jordan complains of belly pain and we have had to slow her tube feedings from 20 minutes to 45 just to keep her from complaining that it hurts all the time.  We also wanted to get a better picture of her reflux and how severe it is since she also complains that her mouth hurts occasionally.  

The results were not exactly what we expected.  They found that the Nissen seemed to be intact, but that there was one brief episode reflux and an episode of a portion of the Nissen herniating above the level of the diaphragm.  Stomach and gastric emptying were normal showing no reason for belly pain due to feedings.   Basically, she is digesting her food normally and has a very small amount of reflux.  This did not really help us understand why she is in pain.

She started seeing the Chiropractor because I noticed that her right shoulder was significantly higher than the other and I have always wanted to see if chiropractic could help her with her swallowing.  We found that she has a 9 degree curve in her spine.  This also means that we are scheduled to see the Pediatric Orthopaedics Clinic in the end of September.

She was re-checked by the surgeon to see that her button was not causing any problems.  Although, we didn't think this was a problem, we had not seen him for over 2 years and it was good to have an evaluation.  He felt that the button was sticking out slightly more than he would like so he prescribed a button 1 size smaller.  Unfortunately, in order to swap buttons, it requires 1-2 people to hold her down and another to actually take out the old one and put in the new one.  And it should be done when her stomach is completely empty so that there is minimal leaking of stomach contents....therefore, we are over a month out from that appt....and we still haven't changed it.....

Next, Jordan was evaluated by a psychologist at Developmental Enhancement.  This was highly suggested by her speech path....or should I say, required.  Jordan became so difficult this spring that we began to consider it a good speech session if she didn't hit Juli!!  This is the same psychologist that is seeing Conner and he decided Jordan needed help when she had a complete breakdown when we were in his office for Conner earlier in the summer.  They are located in the same office as the Center for Childhood Development where she receives her speech therapy and they work primarily with special needs kids.

He sees that Jordan has some challenges with wanting to be in control and her inability to manage her emotions.  He said it is very common for kids with medical needs and lots of appointments to struggle with feeling completely out of control.  In order to help her, we are giving her many choices throughout the day (she can choose from 2 things) but if she doesn't choose, we choose for her.  This is helping her gain control over certain things by giving her choices but not allowing her to not choose.  In time, she will learn that she has lots of control over the little things and this should help her to be okay with not having control over the other areas of her life.  In time, we will work with her on her emotions.

A few weeks ago, Jordan saw Jeannie Kootz at the pediatric neurodevelopmental office.  This is where she used to see Dr. Burdo-Hartman, but since she is now moved on elsewhere, we see the nurse practitioner.  In some ways, that is a good thing!  Jeannie seems to have much more time to give to Jordan and is more thorough in going over things and making sure ALL of my questions are answered and I have papers to explain it all when I leave.  I asked why her cerebral palsy isn't noticeable the way it is in most people who have CP.  She gave a great explanation....Jordan does not have spastic cp, which is in 80% of all cases, but has hypotonic cp.  The difference is that instead of Jordan's muscles being overly tight, they are extremely loose.  This is why she can sit in crazy positions, and seems to be ridiculously flexible!!   She believes that Jordan has built up very strong muscles to compensate for her looseness and therefore it is not highly noticeable.  However, she said that Jordan has such weakness in her core muscles that she has trouble with speech, swallowing and the curve in her spine could be due to the weak muscles.  This was a HUGE moment for me in understanding what is going on with her!!  She also sent me home with a printed copy of the MRI report that identifies what they found and specifically states "compatible with the working diagnosis of cerebral palsy."

Next, she gave us the written report of the Upper GI she had done earlier this summer.  They really wanted us to increase Jordan's calories and encouraged us to start mixing her pediasure with pudding or other thick foods to increase calories instead of using the simply thick which has no calories.  Finally, she gave me info on toilet-training and toilet-training kids with special needs. These handouts have been set aside for now as we deal with numerous other high-priority items....but will be back out soon!!  I know we covered more that day....but that is now a blurr...and I must move on......

Next, we headed to U of M Motts Children's Hospital to have her teeth checked at their dental clinic.  A great friend, Cheryl, offered to come along to help with Jordan since I never quite know what to expect from her :)  We headed there on Wednesday afternoon and after checking in at the hotel, went directly to the pool!!  Jordan loved it and had a blast swimming around and even trying out the hot tub...or as she called it, the baby pool!!  Then we headed out to dinner at the Cottage Inn and ordered some great food!!  Unfortunately, my pizza was thin crust instead of the regular crust I had ordered and Jordan had had enough of sitting around in a high chair so we took it back to the hotel with us.  After getting Jordan settled into bed, we finally crashed ourselves before an early morning appointment the next day.

We got up and enjoyed the yummy hotel breakfast and headed out to the hospital.  I was unsure what to expect, but they brought me to reality fairly quickly by saying "We are pediatric dentists and we don't perform miracles."  I asked them to examine the stains on her teeth and clean as much as they could without causing her any anxiety beyond what was necessary.  They did attempt x-rays, but Jordan gagged on the film they needed to put in her mouth.  After examining her teeth and getting them mostly clean, the dentist identified that it appeared to come from increased iron levels in her saliva.  Since she is 100% tube fed and only eats a small amount of food by mouth and takes no suppliments, there is no reason for the increased levels. 

Now we are looking at having not only her iron levels tested, but other heavy metals as well.  I know that there can be some complications from increased heavy metals and I want to do everything to help her function at her best!!! 

Finally, that brings us to today's visit with the ENT and her FEES study!  The appointment was going well as the 2 SLP's were evaluating her oral motor skills and asking me lots of questions.  However, when the doc came in and gave her the nasal spray that numbs it for the scope, she pretty much lost it.  She was coughing and gagging and kept trying to cough it out and started saying that it was yucky and she didn't want mouth food.  

We went across the hall to the exam room and I sat in the chair with her on my lap and held her feet between my knees and held her hands across her body with my hands.  One of the SLP's stood behind us and held her head in place while the doc put the video scope up her nose.  The 2nd SLP began to feed her.  She used a larger spoon than we use with Jordan and put 3-4 times the amount of food on it!  She was giving her honey thick pediasure which is her "safe food" for now and what she eats 2-3 oz of at every meal.  However, she was screaming and could not handle the large amount of food.  Jordan told her too much, but she kept trying to feed her huge amounts of it.  The doc asked her to thin it so she went to a nectar thick and Jordan started spitting it out every time.  I know that some food did go down her throat, but it was not at all a normal eating experience. 

After we went back to the other room and waited a few minutes, the 3 of them came in to go over their findings with me.  The doctor said that everything looked intact and appeared to be strong and functioning normally however, there was some redness that could be from reflux or irritation.  He said that due to her screaming, she didn't swallow when she should have and so some food did trickle down and pooling did occur, but it didn't seem to bother her.  He said that he didn't see any weakness but that since she didn't want to eat, it seemed that her behavior was the problem. Then he left and the 2 SLP's continued to tell me that Jordan's swallow was fine and that she would benefit most from the intensive feeding program.  They kept talking about her behavior and how spitting out the food and screaming needed to be addressed before she was going to have success in feeding.

Even though I told them that we have been told she is not eligible for the intensive program because her problem with swallowing was mechanical not behavioral, they still felt that she needed to be receiving 3-4 sessions per week of outpatient feeding.  They said that I shouldn't have to be the "bad guy!" all of the time.  This is the approach for someone who doesn't want to eat and has to be convinced just to take bites.  We have the opposite problem!  Jordan wants to eat, but we have to work on her impulsivity and slow her down.  This is completely against what their feeding program is designed to do...get kids to eat!!!

I wanted to scream myself...but instead, I started crying.  I told them that what I had witnessed today was a first.  I have never seen Jordan scream when she was being fed.  I have never seen Jordan refuse food.  I have never seen Jordan spit out food.  What I had just witnessed told me that she was a scared little girl who didn't know what to do with the fact that there was a tube in her nose that didn't feel right and a huge amount of food being shoved in her mouth every time she opened it.

This was not at all how I had imagined this appointment going.  I always try to prepare for the worst.  I know that Jordan will struggle with things and that she may shut down.  I was prepared after the spray that she was upset and identified that things felt weird.  I was prepared to hold her down HARD during the evaluation and that she would squirm and even scream a little bit.  I was not prepared to watch someone force food into the mouth of my little girl who would do anything to be able to eat to a point that she would feel like she was gagging.

I expected to see Dr.'s and therapists that cared about my little girl as a person and wanted to find out what was wrong and not just want to see what her swallow looked like regardless of the invasive techniques needed to be used to accomplish their task.  I am extremely upset that she was traumatized to this extent and hope that she will continue to show an interest in eating, but would not be surprised at all if there was a regression in her feeding therapy.  I am frustrated that Ellen is an amazing therapist that has worked with Jordan on and off for almost 5 years and yet, she was unable to be a part of this evaluation and be the one to feed Jordan in a way that would be comfortable and safe and yet would push her to try things beyond with what have done so far.  

I want a second opinion, but I know it will be a long time before I can put my daughter and myself through that experience again.  Unfortunately, that test was the one that would help us see what is really going on when she eats.  That test was the one that was going to help us see how her muscles worked.  That test was the one that was going to help us see how far the food went down before she triggered a swallow.  That test was the one that was going to help us see how much residue was left behind after her initial swallow.  That test was the one that would see how her aspirations were occurring.  That test was supposed to help us, not hurt us.

Now, I have to attempt to heal Jordan in a matter of hours and prepare her for the next big procedure.  Tomorrow (8/21) we head to DeVos Children's Hospital for an EGD scope/biopsy and PH Probe Placement.  They will scope her GI tract and see if there is anything unusual and the appearance of her Nissen.  They will biopsy the lining of her esophagus and stomach to check for allergies or other problems.  Finally, they will place a thin plastic tube through her nose down into her esophagus.  The good news is that this is all done under sedation.  The bad news is that the PH Probe needs to stay in place for a minimum of 24 hours and she will be awake for most of it.  Therefore, Jordan and I will be spending Tuesday night and most of Wednesday in the hospital to ensure it stays in....or can be re-placed if she pulls it out.  We are supposed to resume normal activities so it will be difficult to keep her occupied in our room.  I am hoping there is a play area for her to run around and be herself.

The results of this test won't be available for several weeks so we won't have any answers when we leave the hospital, but I hope we can continue to move forward.  I am mostly praying for peace.  I am praying that Jordan does not fight having the probe in place and that she will quickly resume eating to create the "normal" environment in her esophagus to gauge the results.  I am praying that I will be able to fight the incredible exhaustion I have right now and finish things around the house tonight, including packing Conner for Grandma and Grandpa's house and packing myself and Jordan for the hospital.  I am praying that I can continue to let go and know that God is in control and that He loves and cares for Jordan more than I do and that I need not worry about anything.

We Finally saw the GI Doc!!!

Although Jordan's feeding challenges are primarily related to her swallowing disorder, there are so many other possible complications that we have not yet had evaluated.  It's like she's a big puzzle.  We have put together several pieces, but we are starting in the center and have no idea how many pieces there are or when we will finish the outside boarder. 

After several years of thinking that we needed to see a gastroenterologist, I finally got her neurodevelopmental doc to agree and refer her for an evaluation.  Jordan and I had an early morning appt. yesterday and headed out to DeVos Children's Hospital to see Dr. Kunde.

She was in a great mood and excited that it was a "doctor day!"  We brought along her activity backpack because I had no idea how long we might end up waiting.  After a very short wait we spent coloring, we were called back by the medical assistant to see get her height and weight.  Unfortunately, that was the trigger for the day.  Jordan was terrified of the scale they used because it was designed for wheelchairs and she was not comfortable with the wide base.  After working for about 5 minutes to get her to stand still without grabbing me, we finally got a weight...28lbs 12 oz.  Next, we moved to get her height.  Again, it was quite a challenge and the first reading was almost an inch under what I knew she had been measured at Mary Free Bed the week before so I told her that I was pretty sure she was 38 inches.  We attempted it again and she measured just slightly over 38in...perfect!!


By this time, Jordan was completely "off."  Basically, she was no longer able to communicate, but grunted and screamed; she was no longer able to walk, but needed to be carried; she was no longer her happy and cheerful self, but the child I have seen emerge from my own more and more as time progresses.  This let me know that the next hour would be a long one.


After going to the room and going over things with the medical assistant, she told me the doc would be in soon.  Jordan and I were in the room finding activities to keep her occupied.  I attempted to read a book, but she just kept grunting and hitting the book and trying to push it out of my hands.  I tried to have her chew her chewy tube to help calm herself, but she just threw it on the floor.  I tried to talk with her about the room and the colors and shapes of things, but that only lasted about 30 seconds before she became upset again.  She eventually, just jumped around anxiously by the door waiting for the doc to come in.


When he did come in, she ran to me and grabbed me by my legs.  I picked her up to comfort her but she just grabbed tighter and tried to hide from the doctor.  I was finally able to put her on the table while I explained to him why we were concerned and what we were looking to accomplish by being there.  During this time, she was moaning and grunting and trying to grab me.  I kept her on the table while he examined her and showed the intern her g-tube and explained it to her.  Since one of our concerns was the severe staining on her teeth and it's possible connections to her reflux, we finally got her to open her mouth so he could see the stains.

After his examination he began explaining to me the various tests he wanted to run to try to figure out what is going on with Jordan.  Since the only Upper GI was done when Jordan was hospitalized at less than a week old and still unable to eat very well, we never felt that it was an accurate test of what is really going on in terms of her reflux.  He ordered her to have another one done so we can see how much and how bad the reflux is.  He is also going to change her reflux meds from Prevacid to Prilosec to see if it makes a difference.


Next, he explained the other 2 tests that he wanted Jordan to have done and how they are performed.  The first is an EGD.  This will help us see what Jordan's esophagus and stomach looks like and take some biopsies.  He wants to check and see if there could be some possible food allergies that are causing a reaction in her esophagus.  He will also evaluate her Nissen Fundopolication and check for a possible hiatal hernia.  He will also be placing a PH Probe Study for a 24 hour period.  This will require us to stay inpatient at the hospital until it is removed.  They gave us the option to do it outpatient, but I am not comfortable taking Jordan home with a tube coming out of her nose that must stay there since she has been so challenging lately.

After the doctor left, the nurse came in to schedule the procedure and go over all of the paperwork with me.  At this point, Jordan was coloring and seemed to be okay.  Although, that quickly changed.  She became agitated and completely shut down again.  The only difference was that this time she became extremely violent.  She was hitting me over and over.  I was trying to restrain her and she started to bite her arm.  This caused her to eventually cry out in pain and then start hitting me again.  This went on for about 20 minutes while the nurse attempted to explain everything to me and I went through my calendar and we found a date/time that worked for us, the doc and the anesthesia people.  

It was so hard to sit there and watch my little princess become such a monster.  It is so scary to see someone you love so much become someone you don't know how to help.  More and more I keep seeing these episodes with Jordan.  Multiple times a day there are complete meltdowns and temper tantrums.  Several times a week there are hitting and self-biting attacks.  Almost every therapy/doctor appointment is causing her to shut down and become unable to function.  I am not sure if we are pushing her too hard with too many appointments or if as she gets older certain parts of her are changing and she is having a hard time coping with things.  I am not sure if it is anxiety, anger, or just developmental, but I love her so much and it hurts me to watch her go through it. 


We have discussed having her evaluated by a psychologist because her private speech path is very concerned about her.  For several months, Juli has only been able to work with Jordan by taking her away from me kicking and screaming.  There have been many episodes of her actually hitting Juli while trying to help calm her.  Jordan normally calms after a few minutes and they have a great session, but there have been occasional times that she has taken up to 20 minutes to recover.  We have also had some shut-downs when going to feeding therapy with Ellen.  We normally proceed with feeding and she eventually comes out of it while eating.  These things are all parts of Jordan's puzzle.

So now we wait for the Upper GI to be scheduled for a few weeks out and then her inpatient tests will be done near the end of August.  We return to see the GI in the beginning of September and should have some answers by then on what we need to consider to help alleviate the pain she feels in her throat and know a little more what is going on inside her.

Please be praying for Jordan and our entire family as we transition into summer and a new schedule.  Jordan seems to really need "home days" right now and we are trying to keep things easy.  I am hoping that without school 3, 1/2 days per week, she will be better.  We are planning to continue 2 speech sessions and 1 feeding session a week unless we feel that Jordan is just overwhelmed with it all.  We may try to take a break if it seems too much.

Reconsidering...

Well, if you read my last post on Jordan's swallow study, it sounded promising that she had lots of strong swallows before her aspiration.  Over the past several days I have had to, again, face the reality of a child that cannot swallow.  Jordan has become increasingly sick and I believe it is 100% due to the aspiration.  Although, there is no way to prove that her awful sounding gunky cough is not a virus or bacterial infection caused by another sick kid, I just know the real reason that she sounds the way she does.

I have spent the past several months adamant that Jordan begin receiving feeding therapy and that we will NOT stop until she can eat.  I want more than anything to provide my daughter the same opportunity 99% of the human population gets to experience.  I want her to participate in the physical, emotional, and social experience that is eating.  I want her to taste various tastes.  I want her to feel various textures.  I want her to sit with our family at dinner.  I want to be able to go out to eat as a family.  I want!

What I am trying to determine is if I am asking too much.  Is it too much to assume that eating is the best thing for her?  Is it wrong for me to put my own desires above her health?  Is it really the right choice to put her into a feeding program when her little body might not be able to handle the consequences?

I have spent the past day reconsidering. 
Reconsidering if feeding therapy is really the right choice. 
Reconsidering if it is worth my daughter's well being to pursue something that I want for her.
Reconsidering if I have been chasing a dream that will never become a reality. 

I know that I have to rely on God for my strength right now.  I am trying not to give up, but I also need to stay grounded in reality.  I will be calling her feeding therapist today and getting her opinion.  I will be praying.  I will by holding my sick baby and pouring out my love.

Video Swallow Study

When we were at Jordan's video swallow study yesterday I was thinking, "I wonder how many of these we have had done??"  I am guessing this was about the 7th, but I'm not sure.  I may just have to look into this!

Jordan was so excited about yesterday!  Every day...all day...every night...Jordan is asking what today and tomorrow are.  She uses the phrases "school day," "Julie day," "church day," "home day."  It can be very annoying to be asked the same question about 40-50 times a day, but we think it is helpful in her organizing her thoughts and anticipating what to expect.  She does best with routine and does not always handle changes with schedule or routine easily. 

Wednesday night she was asking about "tomorrow."  I was trying to come up with the easiest way to explain that she was going to have a swallow study so I told her she would be having some tests and they were going to take pictures of her eating food with her mouth.  I used the word "therapist" and yet, she didn't quite understand (even though she sees several therapists for speech and OT every week, she knows them by name, not profession).  I ended up telling her she was going to a doctor because I knew she would understand.

After that, "doctor day" was the phrase she kept using to plan for the day.  When we arrived at Mary Free Bed, we waited in the waiting room for a while and when Ellen came to get us, Jordan referred to her as "doctor."  Ellen found it quite amusing that Jordan kept calling her "doctor."  Oh well, at least Jordan understood what was going on.

The procedure for a video swallow study starts with me discussing things with the therapist and then going to have it done and then returning to discuss it and make a plan.  During our first discussion, Jordan was having difficulty sitting in the small room.  We got her a coloring book and crayons, but she just wanted to go play in the PT gym with the kids that were having "fun!!"  Eventually, we tried turning on a video, but she continued to be frustrated that she could not be out there.  This led into a screaming fit that I am sure could have been heard 2 floors above us!  It lasted about 10 minutes and although I tried talking to Jordan, comforting her, scolding her and finally putting her in a time out, she continued her blood curdling scream!  Ellen and I attempted to continue our discussion but eventually decided we needed to move on to the swallow study.

Ellen collected several different foods for Jordan to try, including the Trix yogurt that made up her diet for the past year or so.  She also made liquids of various thicknesses, honey, nectar, and thin.  Finally, she brought some cheese puffs and banana and the mesh bags we had previously used with her.  She prepared it all the barium so it would show on the x-ray and we got Jordan situated in her highchair.  Unfortunately, the recording device was not working so they had a video directly aimed at the screen recording it.  Although this is not the quality we wanted, it was better than nothing.

Ellen started with the yogurt.  Jordan had a beautiful first swallow but struggled with the residue.  This is very common with her.  She has a hard time cleaning out her mouth and throat and getting it down.  Ellen actually went with larger bites and Jordan did quite well with them.  Next she moved on to honey and then to nectar and thin.  Jordan did great on all of them!  We did 2-3 bites of each before moving on.  Then Ellen tried some cheese puffs wrapped in a mesh bag.  Jordan chewed on it and again, had a nice swallow.  We moved on to banana and the same thing.  Then Ellen decided to try something that we have not done, she gave Jordan a small piece of the cheese puff.  Jordan chewed it okay, but had no clue how to chew.  She actually chewed with her front teeth so Ellen tried to explain and show her to use her back teeth for chewing.  We tried another cheese puff and she was doing great!  We were in complete amazement and in awe of what we were seeing!  Next, Ellen took a small piece of banana and gave it to her.  Again, Jordan didn't quite know how to chew, but had a pretty good swallow.  She was still struggling with actually chewing the food completely before swallowing and then clearing the residue out of her mouth and throat.  Finally, since we had seen such amazing things, Ellen tried giving Jordan a drink of the nectar or thin (I can't remember) liquid straight out of the cup.  Jordan's biggest challenge, again, is her lack of knowledge of how to eat and drink.  She struggled with putting her lips on the cup and taking a sip, but finally figured it out and took a small one.  Ellen tried one more time and then we saw a large aspiration...and silence.

Aspiration is when food goes into the airway.  Normally, when this happens, there is a natural reflex that causes us to cough in an attempt to clear it out.  Silent Aspiration is common in people with dysphagia.  Think about when you take a drink of water and start to cough because it "went down the wrong tube."  That is aspiration.  Unfortunately, Jordan has a history of the silent kind and we saw it again yesterday.

Up until her aspiration we saw a slight penetration, but everything looked great!!  This is very promising, but shows a couple of things.  Jordan has always fatigued quickly and this seems to still be the case.  We were at about 15 bites when she aspirated and it had been only about 10 minutes.  She also struggles with the swallow process from an open cup.  This allows us to know that we need to control the delivery of the food/liquid.

In the end, Ellen decided to try 12 weeks with one session of feeding therapy per week.  Although, she said that she doesn't know that that will be enough to do much, it is the start we need.  I also discussed with her the v-stim therapy and she is going to talk to some people she knows that are more aware of it and discuss Jordan with them.  She feels that it could potentially help her with more muscle control awareness.  We know we have a long way to go, and we are realistic with our goals, but we are not going to give up!!

Please pray that we can easily schedule Jordan's therapy and that she is cooperative during the sessions.

Thank you so much!!!

Another Video Swallow Study Tomorrow Morning

Tomorrow Jordan will go in for another video swallow study.  She has not had one for over a year and has had no therapy for almost as long.  We don't know what to expect.  Since her severe aspiration in December, she has not taken ANYTHING by mouth.  Nothing.  For a long time she was getting small amounts of yogurt, but that all came to an abrupt end when she started coughing and telling us that her swallow hurt. We are hoping that Jordan is willing to accept foods and will be much more cooperative and sit still better than in the past.  

This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy.  Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try.  After the swallow study, she wants to have a FEEST study done.  This is a more complex swallow study and I am yet undetermined how I think she will tolerate it.  I am not sure what the doc will want to do after that, but we see her in August again.

Another interesting thing that has happened is that we switched insurance carriers.  We are now with Blue Cross Blue Shield Michigan.  Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years.  Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest.  This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....

Well, I was talking with the case manager about the staining on Jordan's teeth.  (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface).  We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part).  Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc.  I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues.  When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her.  I had never thought of that.  I am my child's advocate, yet I had not fought for her.  Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...

The Eve of Jordan's Annual Evaluation

Every year Jordan is evaluated by the Neurodevelopmental Specialist.
Every year I plan for several weeks; writing down concerns and questions.
Every year I get to the eve of that appointment and I am terrified.
Every year the evaluation goes well.
Every year I tell myself that it's no big deal.

Tonight I am finalizing my list of questions and wondering if I have covered everything.  I know that there is more that I have thought about or that has concerned me over the past year, but I don't feel like I can keep thinking about it without losing my mind.   I am sure that tomorrow morning things will go well and Jordan will be on her best behavior and we will come back home and I will wonder why I get so worked up over these things.

I plan to discuss some of our "normal" issues - weight gain/growth, temper tantrums and behavioral concerns, potty training...and the lack of success, etc.  All of these are easily covered and we are normally on the same page with things and they may give me some handouts and suggestions.  Easy.

However, this year I have some additional things that I am planning on being a little pushy about.
     *Jordan has only been in feeding therapy for 12 weeks out of the past 1.5 years.  I am sick and tired of waiting for her to get older so the therapists at Mary Free Bed will work with her to teach her to swallow!  I want my daughter evaluated by a recognized pediatric feeding program that will provide her therapy now...and I want Vital Stim therapy.  We are looking at Cleveland, Cincinnatti, Mayo or any other the doc recommends - we will figure out how to make it happen later.
     *I want her to be evaluated by a GI doc - someone that will tell me why we are keeping her on reflux meds but we have no medical documentation (other than the visual appearance of her esophagus during her scope a year ago) to explain what is going on in there - I want an upper gi, esophageal ph study, and any other tests that can help us understand her better.
     *I want an evaluation for her sensory processing issues - she is really struggling with this at times and I need to know how I can help her.
     *I want her to be referred to a dental specialist for the horrible brown stains that cover her teeth - having them partially cleaned twice a year by her dentist is unacceptable.  We need to figure out what is causing them and get them completely cleaned.
     *I want to know why she has told me several times a day for 4 months that her "bottom hurts" and I have taken her to her peds office twice and they can't figure out what is wrong.  We have tried all sorts of things and nothing helps.  She doesn't like to sit in her high chair, hold her on my hip, or anything that puts pressure on her bottom.  Something is wrong and I need to know what!
     *I want another MRI done.  She had one when she was about a year old and the doc that recommended it said it should be done as a baseline so another could be done in 3-4 years.  Well, it's been almost 4 years.  I want to see if anything has changed and if anything else can be detected.

That's all...

I sure hope she'll listen...and be willing to understand that I will do ANYTHING to understand Jordan better and to help her to move forward in her development.

More than anything I need to know that Jordan and I and our appointment tomorrow is covered in prayer.  I know that God loves Jordan even more than I do and that He is in control (not me) and that I need to let Him lead me tomorrow so that I don't try to stray from the path He has marked for her.  I love my baby girl and would do anything for her, but sometimes I need to pull back and let Him handle things.  Please pray that He is in control of tomorrow's evaluation.

Thank you!