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!

Feeding Tube Awareness Week - February 5-11, 2012

Well, I might as well post about Feeding Tube Awareness Week on my blog that I somehow never manage to keep updated!  I just found out about this a few months ago and it wasn't until a few weeks ago that I decided I wanted to do something for it.  I contacted Jordan's Early Childhood Special Education teacher, Pam, and asked her if I could come in to her class and talk to the kids about Jordan and her feeding tube.  Pam loved the idea and I am scheduled to go in on Wednesday morning.  That led me to thinking about who else Jordan has regular contact with that may benefit from learning more about her and her tube.  I checked with our church's Children's Ministry Director, Michelle, and she also loved the idea of telling the other preschool kids at church about it.

Yesterday, I went in and spoke with the kids and teachers.  It went pretty well.  I read the book "My Tubey" and then shared a little bit about Jordan and told them how she gets her food (fortunate for me, it was feeding time so we put on her backpack and hooked her up).  My favorite comment was the little boy who raised his hand and responded "when I was a baby, I was sick and that's how I got my food." 

I also wrote a letter and had a list of helpful resources that I sent home with the parents.  Please take the time to read and learn :)
Feeding Tube Awareness Week Letter
Feeding Tube Awareness Week Resources

Thanks for taking the time to learn more about feeding tubes and those who live with them or love someone who has one!!

New Inspiration and Looking Ahead

Again, it has been a while...oh well.  By now, you would think I would not even expect that I could post once a month.  I suppose it takes a HUGE event to force me to make the time to blog!!

About a month ago I found some interesting groups on Facebook that connected me to people and resources regarding people with feeding tubes.  Some of my favorites are:
Feeding Tube Awareness - great resources!
Belly Buttons - Jordan is using their belly buttons every day!!
TUBEalicious Tushies  - just received some med-port covers - hope to never feed the floor again!!!

Through these resources I feel I have become more educated on what I can be doing to better care for Jordan and her tube.  The products available are amazing and if money were not issue, I would keep buying things!!!

These resources have, in turn, led me to an amazing organization that recently posted a video on youtube.com.  I keep watching it over and over and over.  I posted it on my facebook page, but I encourage everyone to please watch this video!!!

In this video, Rydr is very similar to Jordan in several ways.  His listed diagnosis is Hypotonic Cerebral Palsy...Jordan has a diagnosis of Cerebral Palsy - class 1 and Hypotonia...it seems like they just combined them.  Jordan had a very difficult birth and was hospitalized soon after...Ryder was in the NICU for 6 weeks following his difficult birth.  Rydr was sitting upside down on his mom's lap in the waiting room...upside down is Jordan's favorite position!!  Jordan receives school speech therapy 2 times a week and OT once a week and privately receives speech/OT 2 times a week...Rydr receives speech therapy 2 times a week, OT once a week, PT once a week and is also seeing the speech path, Jan, in the video 2 times a week.

Along with these similarities is one HUGE difference..."he has never taken a break in feeding therapy."  Rydr has been receiving feeding therapy since being in the NICU...Jordan has received feeding therapy off and on since her diagnosis of failure to thrive at 9 months old.  Every time we are told to come back in 6 months or a year.  Most recently, we were discharged last March with the instructions to bring her back when she was more willing to follow instructions (or "behaviorally responsive").  That vague direction left me feeling as though there was no more we could be doing for her. 

Until I saw that video.

Now, I am seeking every opportunity to give Jordan a chance to learn to swallow.  Even though she may not be fully responsive to directions, she could still benefit from the practice of swallowing and various techniques of therapy.  I had never heard of VitalStim therapy and now I have read several articles (including: New Study) about it and understand how and why it could benefit Jordan.  I have spoken with Jordan's current speech path at the Center for Childhood Development and she recommended looking into evaluations at the Cleveland Clinic's new Pediatric Center for Airway, Voice and Swallowing Disorders. 

Although we are unsure how we will be able to fund this evaluation and the possibility of continuing treatment, we feel it is absolutely in Jordan's best interest for us to provide her every opportunity for improvement.  I have learned that Jordan's Neurodevelopmental Specialist (the one that oversees and prescribes her feeding treatments) does not approve of the VitalStim therapy and therefore, it is not available in the Grand Rapids area.  This infuriates me!!!

Over the next few weeks I hope to be in contact with the National Foundation of Swallowing Disorders (the organization that put out the video) and the Cleveland Clinic and be on track with information and appointments moving us toward a treatment plan for Jordan.  Please be in prayer that we are able to make the necessary contacts and find a way to afford this program.

On a brighter note, we also received notification yesterday that we were awarded the $1000 grant that we reapplied for!!!!!  It will be available after the first of the year for us to use toward speech and OT at the Center for Childhood Development.  I am so excited to have the opportunity to continue Jordan's treatment with her amazing therapist, Julie!!!!!  We have seen more advancement in her speech in the past 6 weeks since she has been working with her than we have seen in quite a while.  I love that she has taught me the PROMPT method of therapy (well, at least some of the cues...) and they are helping Jordan make sounds more clearly than ever before!!  I am so excited to continue working with her!!

Well, that is all for now.  It's Friday night...pizza and movie night!!!!!

Catching Up...Oh, Nevermind...Moving Forward

Yes, it has been a long time.
Yes, I have wanted to post many times over the past 4 months.
Yes, I want to get everyone up to date on things.

But, life is too busy for me and it seems like such a HUGE task that I have turned away from posting what was happening because I felt that I needed to update everyone. I have decided that although I hope to post about some of the adventures the past few months have brought us, I need to just be free to post as I need and am able to.

So, that brings us to today...

Jordan is now in school 2 days a week.  Some days I am glad...some days I wish she was here everyday.  Days like today...I wish she had been in school.

Over the past few weeks I have come to an difficult decision about parenting my special daughter.  I prefer to not take her in public.  I prefer to keep her at home or in a place where I don't have to worry about her meltdowns, screaming attacks, temper tantrums and overly active behavior.  I prefer to not be judged by my daughters behavior.

That may seem harsh to you.

My guess is that you don't have a child that is often completely uncontrollable.  A child that will randomly start screaming at the top of her lungs for no reason...and then realize that she likes the sound and the way if makes her feel and she will keep doing it over and over and over and over...even though you are just trying to finish your grocery shopping.  Or a child that has the inability to swallow and yet has a HUGE desire to eat, thereby, making your family night out at a restaurant a horrible experience because she keeps grabbing everything that is within arms reach and if you try to take it away she throws it...even shattering a plate on the floor.  Or a child that will throw herself on the couch...or the floor...or against the wall because it feels good.

My life is not normal.  My life is challenging.  My life is exhausting.  My life is full of blessings that no one will ever understand.

I wish I could see the blessings more clearly through the screaming and stress.

I wish I could understand why she does the things she does and what I can do to help her.

I wish I could get rid of the guilt I feel for just wanting a break from her.

I wish...

Reality Check

Today was another one of those challenging days for me.  I find that when I have those days, this is where I come to process, share, and figure out what to do next.  A year ago, we decided to pursue private therapy for Jordan for the summer and had her receive speech and some OT through the The Center for Childhood Development.  We had an amazing experience!!  The thearpy is a "whole body" approach.  Although her focus was speech, they addressed all aspects of her needs, particularly her sensory processing.  We were thrilled with her progress in these 3 months and she loved going there!

Unfortunately, as it is in the world of therapy and special needs, nothing is free...or even inexpensive.  The center does not participate with any insurance so we paid out of pocket for the therapy (funded by my parents) and submitted to our insurance company for reimbursement.  Although we submitted in August for the first part of the summer and in October for the second half, it was March before the first part was covered and the second still has not gone through.  Overall, we paid around $1500 for her therapy and have been reimbursed $85.  Yes, it is expensive to have a child with special needs and to try to get quality help.  Derrick is pushing the HR people at work regarding the second portion of the summer.

Because we don't have the money to continue to invest in private therapy, we have been researching funding options.  The director at the center, informed me about a grant through the The Family Hope Foundation.  We applied in April and have been waiting, anticipating a response on June 1st.  I have been working gathering the information they required if you qualify so that we could quickly move into therapy and utilize these funds. 

I guess I sometimes have too positive a view on things.  I guess I assumed that Jordan would qualify and we would at least be able to offset our expenses even if it didn't cover the full amount.  I guess I just want what is best for Jordan.  I guess yesterday's letter was a huge reality check for me.  We did not qualify.

I know that in their letter they stated that they had a 63% increase in applicants from previous times and that they are seeking additional funding and to not be discouraged and to apply again.  But what about now?  What am I supposed to do to help give my significantly speech delayed daughter the gift of communication? 

Derrick and I have talked numerous times about how we are comfortable with Jordan's feeding tube as a life-long reality.  She will be able to function fairly normally if she can consume some small amounts of food and drink in our food-focused society, all while supplementing her nutrition with tube feedings.  However, if she is unable to communicate clearly, she will be outcast by her peers, struggle in school, and have difficulty finding success in the working world.  Speech is necessary for success in the world we live in.  This is reality.

I appreciate the "free" therapy we have received for her since she was 10 months old.  However, nothing has come close to comparing to the therapy and results we saw in the 3 month period we paid for her services.  Unfortunately, we don't have an income level that allows us the freedom for that option.  I know that there are families out there that could easily cover the $110 per visit therapy, we are not one of them.  We even discussed if we could afford two or even one visit per month and we don't know if we can do it.  This is our reality. 

I hate to ask my parents to fund therapy again.  Although they would probably do so, asking for money makes me feel inadequate.  I know my husband struggles with the fact that he doesn't make more money to provide for our family.  He works 2 jobs and we are careful about how we spend our money, but there never seems to be enough.  The saying goes, money can't make you happy, but if you don't have money, life sure has some additional challenges.  

I know that God is in control.  I know that he loves Jordan more than I do.  I know that I can't know what the outcome of her life will be.  I know that He will carry me through this obstacle, just as he has every other time I have faced a challenge.  I know that as her mom I want to do EVERYTHING in my power to help her and right now I feel helpless.  I know that God is teaching me something through this...it will just take time to learn what that is and in the meantime, it is hard.

Publish Post

I don't know what will happen next.  I know I can apply for the grant again in October and will find out in December if we qualify.  I don't know if I want to even anticipate that funding and then be let down.  Maybe next time I will approach it with a "reality checked" mind.

My Lenten Journey

On Wednesday, March 9th I set out on a Lenten Challenge.  Instead of giving something up for that time, I chose to make a choice to spend more time blogging about Jordan and this journey.  As a busy mom, this required me to let go of something else in order to find the time to blog.  I had initially thought I would blog daily...but quickly learned that it was not even a possibility in my crazy world!! 

I found that it was very healing to write through the experiences and feelings of this past 6 weeks.  It was actually hard sometimes to choose what to write about because there were several things going on at once!  I have some topics that I would still like to cover and reflect upon but never got to them.  I think this has helped me to see that I would like to try to blog more often...not once or twice a month.

But more than anything, I was encouraged and uplifted by the comments and responses from those of you who read my ramblings.  Several of the things I experienced over this past several weeks have been normal situations for me.  I travel this journey alone most of the time.  By putting these stories on Jordan's Blossom, I have allowed you to catch a glimpse of my world.  In turn, I have been blessed by your words.  Thank you!! 

Swallowing...and Scary Moments

Over the past few days, we have experienced several of our "scary moments" with Jordan.  The reality of our little girl is that she can't swallow.  It's hard to explain to others because at the same time she can swallow.  The best way to describe it is that she is unable to gather food together on the back of her tongue and forcefully push it down her esophagus.  Normally the food just drips down the back of her throat and eventually she realizes it is there and she has a weak swallow that pushes a portion of that food a little bit further down.

Unfortunately, she is also missing a neurological function called peristalsis.  This is the rippling effect that pushes your food from your esophagus into your stomach.  Jordan just doesn't have it.  We don't know why, it just makes it harder for her food to get where it needs to go.

Now, the description I just gave was based on pureed foods.  For those of you familiar to baby foods, stage 1 or 2.  Not yet to 3 where there are small chunks.  We are talking smooth...like applesauce, yogurt, etc.

However, moving on to solid forms of food has not been possible because Jordan has a tendency to chew but not swallow.  She, in fact, has a STRONG desire to chew!  It has always been a challenge for us to find safe chewing objects.  Many of you have seen her with a straw bent in half sticking out of her mouth.  Although we don't feel it is the safest thing for our daughter to run around with a straw in her mouth, the alternative is that she finds the smallest crumb, lint ball, paperclip, whatever...and puts it in her mouth.

We have gone through cycles with her putting things in her mouth.  Starting at around 1 1/2 she started recognizing that she enjoyed chewing and we tried using normal teethers and chew toys.  As she grew older, we noticed that she was finding things left around and it became a danger to her.  We have tried to be diligent about keeping small things put away.  My boys have learned to be very careful not to leave out small toys, Legos, nerf gun bullets, etc.  However, none of us are perfect...

Jordan spent the year of 2010 being NPO.  That means that she could not have anything by mouth.  We started the year with many struggles to keep things out of her mouth.  Anything she could find, she wanted in her mouth.  By summer, I couldn't let her outside without a watchful eye or she would be putting things in her mouth...sand, grass, sticks, rocks.

It was actually the final reason that we did not end up putting her into the ECSE classroom last fall.  The teacher was extremely concerned about her putting things in her mouth and didn't feel that we would be able to get her a 1-on-1 para pro to watch her.

Some of our major incidents over the years include swallowing a small decorators nail that she found inside of a drawer to an end table.  She had it in her mouth and I realized it and saw it - I laid her on her back and tried to sweep her mouth and it was gone!  After a trip to the ER and an x-ray, we saw the little nail at the top of her large intestine.  It eventually passed and everything was fine.  Praise God!!!

The next major episode was a time she was playing in Conner's room and I heard her start to gag.  I ran up and found her standing in the middle of the room with a mouthful of white paste!  I wasn't sure what it was until I saw a piece of sidewalk chalk on the floor next to her with teeth marks on it.  I ran her downstairs and held her upside down (I learned this after the nail incident) and swept her mouth repeatedly and then used a washcloth to clean it out.  During this process, I called 911.  She was still gagging but was starting to breathe normally as I spoke on the phone with the dispatcher.  We determined that she didn't need medical assistance but I was then referred to poison control to ensure that there were no risks with the chalk.  Again, she was fine in the end.  Praise God!!!

We have had many other incidents where she would put things in her mouth and we would sweep them out. This just became a reality of our life.

By fall, we saw a tremendous improvement!  I was actually able to let Jordan and Conner sit at the kitchen table playing playdoh and go in the kitchen to make lunch.  I know it seems like a small thing, but for me this was HUGE!!!  Although my eyes were still on her, I didn't have to sit by her side to do every activity.  I didn't have to be in the same room as her at all times.  I finally could let my little girl just play in our own home and not fear all the time.  What a relief!!!

This past January, we headed back to Mary Free Bed for another swallow study and ended up beginning a round of feeding therapy.  I think that opened up the floodgates!  Within the first week of therapy, Jordan took the cork hot pad off the table following dinner into her bedroom and took several bites out of it and started gagging on it.  (see pic below of what we pieced back together afterward.)  A 1/2 hour later she was on my bed eating a tube of chapstick that was on my nightstand.

We have had several incidents since then and they just keep coming!  Since this past Friday, she has gotten something every single day!  Friday, she got some pretzels that we had been snacking on while watching a movie during her naptime.  After she got up, she found the bag of pretzels!  Because Derrick and I were both here and she wasn't gagging, we actually took pics and video.

Saturday, she found a jelly bean that Conner dropped after doing a devotions with the different colors of jellybeans and a little Easter poem.  That time she started gagging.  On Sunday, she found an ice cube that had dropped on the floor and was licking it.  On Monday, she took an old tangerine out of the trash (I had just cleaned out the fridge) and took it out to the living room and took a bit out of it.

Yesterday, Conner had wanted a cookie but I wouldn't let him have one so I told him if he was hungry to go get an apple.  I was down in the basement at the time.  He went upstairs and got one out of the fridge, but also got the apple slicer out of the drawer.  He left them on the kitchen counter and went into Jordan's room to play with her.  At some point, he came down and Jordan found the apple and slicer and took them into her bedroom.  After a few minutes, Mak went to check on her, and found her in her room with several bites out of the apple and the slicer on the floor!  He brought her down to me and I got the apple out of her mouth.

I broke down.
I was so weary.
I was so scared.

How much more of this would it take before something would seriously get lodged and she would silently choke?

As much as I hate the sound of her gagging, it means she is still alive.  I fear the day that I don't hear that sound and in the silence, assume everything is okay.  I try every day to keep my home a safe environment for my children.  Unfortunately, I feel like it is an impossible task with a child like Jordan.  Everything is a risk because of her curiosity and strong desire to eat.  She doesn't even distinguish between food and non-food very well.  I feel like our own home isn't even safe for her.

Today, I am going to attempt to go through the house and find any risks and either collect them or write them down so we can secure them. We still have child locks...but only on some cabinets and drawers...and I think we need them on all that contain something she could get her hands on.  We have to create a safe environment, both for her safety and my sanity.

I sometimes long for the simple life.
Wonder what it would be like to not worry all the time.
Yearn for extra energy to face all of the situations that drain me every day. 

...and then crying, I look into the face of my beautiful daughter...and I know that my God and my Creator will help me to handle these situations.  He trusts me to care for her.  He gives me strength to face every day.

Why Moms of Special-Needs Kids ROCK!

A few weeks ago I picked up a magazine called "all you" for the awesome coupons that it has inside, but found a treasure better than savings.  There was an article called "Raising a child with special needs changed us for the better."  I put it aside because it was during the process of Jordan's "envelope" and I wasn't in the right mindset to read anything relating to Jordan.  This past weekend, I was sorting coupons and decided it was time to read it.

It amazed me that the author of the article has a blog that I had come across just a few weeks ago and knew that I wanted to check out a little more in the future.  It is lovethatmax.com - this section was in the article I read, but is quoted as being adapted from the blog.

Why moms of special-needs liks rock!
*Because we never thought that "doing it all" would mean doing this much.  But we do it all, and then some.
*Because we've discovered patience we never knew we had.
*Because we are willing to do something 10 times, 1,000 times if that's what it takes for our kids to learn something new.
*Because we have heard doctors tell us the worst, and we've refused to believe them.
*Because we have had bad days and breakdowns and bawl fests, then we pick ourselves up and keep right on going.
*Because we manage to get ourselves together and out the door looking pretty damn good.  Heck, we even make sweatpants look attractive.
*Because we are strong.  Who knew we could be this strong?
*Because we aren't just moms, wives, cleaners, chauffeurs, cooks and women who work.  We are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
*Because we give our kids endless love and still have so much love left for our other kids, our husbands, our family.
*Because we understand our kids better than anyone else does - even if they can't talk or gesture or look us in the eye.  We know.  We just know.
*Because we never stop pushing, or hoping, for our kids.
*Because just when it seems like things are going OK, they're suddenly not, but we deal.  We deal even when it seems like our heads or hearts might explode.
*Because when we look at our kids we just see great kids.  Not kids with cerebral palsy/autism/Down syndrome/whatever label.

This list helped me to realize how much Jordan has changed me.  I never realized that I could do what I have done over the past 4 years with her.  I always looked at moms who had special-needs kids and said to myself "I could never do that!"  Yet, God know I could.  He knew that I needed to grow.  Jordan is the tool He used to help me realize what I am capable of.

However, I do have days where I feel like I can't handle it.  I have days that I feel like I am failing her and my entire family.  I have days that I am weak and just want to quit.  But that is when He steps in and gives me what I need to move on.  He walks me through the challenges and stays by my side.  He guides me in the decisions and gives me strength.  The hardest part is recognizing that he is always there and will never leave me.

Words

Last week someone said something that I didn't really react to...but the next morning when I was telling Derrick the story, I broke down and started crying.  I wanted to run to this blog and post what happened.  Unfortunately, I was not willing to share who said it or what was said.  That makes for a rather boring blog post.

I have been processing through this comment, the way I interpreted it, and the intended meaning behind it (in my opinion.)  Mostly, it made me realize that I have a long way to go to truly accepting that not everyone views Jordan as I do. 

I see her potential, not her limitations. 
I see her strengths, not her weaknesses.
I see her beauty, not her imperfections.
I see her high-energy level, not a hyperactive child. 
I see her as a gift from God.

Not something I could have ever asked for, yet he gave her to me.
In doing so, God has shown me that He trusts me.
More than I often trust myself.

OOPS!!

I was slightly confused last week after Jordan's feeding appointment on Tuesday.  I talked with Ellen at the session about realizing that Jordan was nearing the end of her scheduled appointments.  I asked her whether she thought we would continue therapy or take a break and continue what seems to be a safe method of pleasure feeding.  She told me that she thought we would take a break for 3-6 months since there isn't significant progress to move forward to getting her off her g-tube.

After returning home I didn't think much of it, but on Thursday I flipped my calendar to April to see what was coming up in the next week.  Since it was spring break things were a little different than our normal schedule, but I noticed that Jordan had no more therapy scheduled.  I remembered talking with the lady at Mary Free Bed when we scheduled Jordan for her therapy and I realized that Jordan had no more scheduled appointments!  I kinda freaked out because it seemed like there was no closure to her feeding therapy and yet I had no more appointments. 

I called Ellen on Thursday and left her a message explaining my confusion and asking if she could just let me know what she wanted me to do.  Should I wait 3 months to schedule more therapy...6 months?!?!?  I kind of rambled on the message because I was so shocked that all of a sudden I was faced with the end of this process that I was confused.

Since Ellen only works part-time, I was not surprised that I didn't hear back from her before the weekend.  I didn't hear back on Monday and by Tuesday I was very tempted to call again, but didn't want to seem like a crazy woman!  Finally, I heard back from her on Wednesday.  Apparently, she had been confused by my message as well and had some problems with hearing the message on her phone and was unsure exactly what I was talking about.  Oh yeah, did I forget to mention that Jordan has therapy scheduled through April 19!!!!  Yeah, I messed up!  When I didn't show for my Tuesday appointment, Ellen figured something was up and checked the message again and realized that I thought Jordan was done with feeding therapy. 

I felt like such a scattered woman!!  Jordan's therapy schedule is a major part of what my day to day schedule revolves around.  I try so hard to keep it organized and on track.  How in the world did I miss 3 weeks of scheduling?!?!? 

I apologized to Ellen and laughed at myself.  She told me that she was surprised because I have always been so on top of things and this was my first faux pos in 3 years!  I went back to the schedule I received in the mail from MFB when I scheduled her and it shows appointments through April 19.  I have no idea why I didn't put them in my calendar?!?!?  I look forward to having a few more weeks to tie up these questions in my head...and hope that I can get my act together and not forget appointments anymore!!

Finally started Compleat!!

Well, after waiting over a week for Meijer to get the Compleat in, they finally told me that they were out at their warehouse and didn't know when they would be getting it in.  This is not a problem now because we are using her Pediasure/Boost mixture...however, once we start the Compleat, we have exactly one month's worth of food that we can get every month.  Therefore, when our WIC resets for the new month and I go to get her food, I normally have no more than a day or so extra.  I cannot just wait until it comes in.  This is her only source of nutrition and I cannot risk it not being available.

I went through my list of WIC providers and realized that CVS is another location that I can use.  Since they are less than a mile from our house (closer than Meijer) and I am there weekly to pick up a few great deals, it seemed like a perfect fit.

I stopped by there last Thursday and asked the Pharmacist if they could order the formula and I could pay for it through WIC.  She said that they could get it and it would normally be there the next day, although sometimes it may take 2 days from the time I order depending on the time of day.  I was so excited.  I confirmed this with the Manager before leaving the store and waited for Jordan's Compleat to arrive!!

I went there Monday morning to score some deals and see if her food was in.  It was!!!  I proceeded to take it to the counter to check out and the girl behind the counter started to ring it up.  I had 2 cases of 24 cans and each had to be rung in individually so it took a while.  We started chatting and she told me that she had been on a g-tube for about 4 months several years before because she has Crohn's Disease.  It's always interesting to meet someone who has lived this and hear a bit about their story. 

I am so thankful to have started Jordan on this new food!  The transition takes 5 weeks to get her on it 100%.  If we transition too quickly, her body can reject the food and have some difficulty digesting it properly.  Yesterday we took out 30 ml of her mixture and replaced it with the Compleat.  Every 5 days we increase the Compleat and decrease the mixture. 

The cost of Pediasure and Boost seemed expensive...but Compleat is ridiculous!!!  Each 8.25 oz can is $4.18!!!  Once Jordan is on the full amount, she will use about 3 cans a day.  I am so glad that WIC is covering this expense for us!!

IEP

Today's IEP for Jordan went very well.  Derrick and I met with Karen, the physical therapist, Carol, the occupational therapist, JoAnne, the speech path, Pam, the ECSE classroom teacher, and Angie, the Director of special education. 

First, we went over Jordan's evaluation...the envelope I didn't want to open.  Each therapist gave their summary of Jordan and then we responded with our thoughts.  Overall, we agree with the report, although feel that the actual numbers are skewed because of Jordan's distractability and lack of focus during the evaluations. 

Next, we discussed that we would like to try Jordan in the ECSE classroom next year, but want to make sure that it is not too much for her in addition to the likelihood of outside therapy (feeding, OT following thumb surgery, etc.)  We are scheduling her for 3 days a week with the option to keep her home for a day whenever we feel that is too much.  We were thinking we would only send her 2 days to start and this was a good compromise because it allows us to easily transition into 3 days whenever we feel ready.  The director offered to provide an additional adult in the classroom on the days Jordan is there to allow assistance in monitoring her and helping her with some of her challenges.  This will be in place for the first 6 weeks and we will evaluate in mid-October if we need to continue that assistance.  We will also train the nurse and 1 or 2 other individuals in the fall to do her g-tube feedings and to be prepared to replace her tube if it comes out.  We requested that Jordan be removed from the classroom during snack time by the additional adult so that there is not a battle with her wanting to eat what the other kids are having.

Jordan will no longer be receiving individual physical therapy as she has no specific challenge areas in gross motor.  Karin offered to consult with us if we ever came across something that concerned us.  We will meet with her one more time before this school year is over.

Jordan will receive OT through the sensory motor group that she has been participating in during the past few weeks.  We will continue to meet with this year's group through the remainder of the school year and next year she will participate with her class.  Knowing that she may have her thumb surgery sometime late summer or fall, she will have individual OT following that as part of her rehab.  If we feel it is necessary for additional support, we will work that out with Carol at that time.

Jordan will be receiving speech at least 2 times a week while in the class.  JoAnne said that at least one of the days Jordan is there, she will be in the class for most of the time and will work with her individually or in a small group.  She will also work with her on the other day she is there ensuring that the educational focus for Jordan be on her speech development.  We are still waiting on the communication device, but are also going to attempt to create a usable picture system for Jordan that she can use when she becomes frustrated with our inability to understand her.  I am hoping to use this significantly this summer and help her to communicate with us as well as with others so she is better understood.

Transportation still has to be decided, but we requested that Jordan be picked up as late as possible due to her feeding schedule and be transported in a car seat on the bus due to her small size.  I am very nervous about putting her on a bus and always have the option to drive her myself...but final decisions don't have to be made until late August.

Overall, I feel good about the IEP.  I know that all of the therapists working with Jordan have her best interest at hand, I just sometimes feel that they are always so focused on what they are doing, that they might not recognize all that I am doing for her in our own home.  We work every day on speech, occupational, and physical therapy.  I may approach it differently than they do and don't have the educational background to support what I am doing...but I am a mom, and I love my girl, and will do anything to help her develop the skills she will need to be successful in life!!!