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.
