September Surprises
When September started we had 2 appointments scheduled for Elizabeth to gain additional insight into her issues with vision, hypotonia, and developmental delays. By the end of September, we would have seen 5 specialists and had one test that would set us on a surprising path of discovery and awareness regarding Elizabeth's many issues. September was a whirlwind of information. Sometimes we want answers, and September was a life lesson on seeking answers. The biggest challenges and lessons learned during this month were that the answers we seek are not easy to hear, not what we wanted to hear, but exactly what we needed to hear. Above all, September was a lesson in the old saying, "It could always be worse."
Our first appointment in September was with Dr. Herzig, a Pediatric Ophthalmologist in Cranberry Township. Dr. Herzig impressed me, because she was intently listening to Elizabeth's story, her symptomology, and to my insistence regarding my continued concerns about her vision despite having seen multiple providers about this issue. She carefully examined Elizabeth. It was a very long appointment, and I was glad that I had my Aunt Nancy with me for company and support. Dr. Herzig confirmed what the other Ophthalmologists had also confirmed: that Elizabeth's eyes were structurally fine. However, she also concurred that she was very farsighted, even considering her prematurity. Dr. Herzig also said that Elizabeth had a condition known as "Psuedostrabismus," which is a very mild form of lazy eye. She recommended that we order glasses for Elizabeth but reduce the prescription in the lenses to force her eyes to work as a team, which would be an effort to correct the Pseudostrabismus without patching her eye. I thanked her for her time and expertise, and we scheduled our follow-up appointment for December. We left the office and went to Dittman Eye Care in Butler to order Elizabeth's new glasses. We chose a bright pink Miraflex frame and ordered them that day. Amanda McCollough was super helpful to us at Dittman's, and it was nice to have a friendly and familiar face helping us on that day. So, we awaited the arrival of Elizabeth's glasses, and we hoped that she would leave them on!
Our second appointment in September was on the 10th at the Cerebral Palsy (CP) Clinic at Children's Hospital of Pittsburgh (CHP). I was so nervous as my mom drove Elizabeth and I down to CHP that day. No matter what doctor's diagnose Elizabeth with, no matter what issues she has now or for the rest of her life, we will not love her any less. She will still be our beautiful, miracle, princess and daughter. However, when you seek answers, I feel that it is only human nature to want to hope for the best. I was hoping that it was not Cerebral Palsy, of course, but it would not have been the end of the world if it were in fact CP. The clinic would prove to be a wealth of resources for our EI team and for Elizabeth. We met with a PT, OT, Speech Therapist and Dr. Patterson the Rehabilitative and Physical Medicine doctor. Their knowledge, listening, and compassion were very helpful. They decided to increase her Speech Therapy from 1 hour every other week to 1 hour each week. They decided to increase her PT and OT to 2 hours each per week, instead of 1 hour each per week. They also wanted to add a Vision Therapist to her EI team, have Elizabeth evaluated by the Feeding and Swallowing Clinic at CHP, and felt that an evaluation to get her a gait trainer to help her with walking would be an excellent idea. Dr. Patterson wanted to see Elizabeth in 6 months as a follow up. They also decided that at that time they were not going to diagnose her with CP. Dr. Patterson said that she felt that it would definitely be a long road for Elizabeth and that her issues were related to something other than CP. It as a relief to hear that for now CP was not going to be an "answer" for us, however it was frustrating that she felt that it would be a "long road" and was "something else." As we were leaving, we got a call that Elizabeth's glasses were in, so we stopped at Dittman Eye Care on the way home to pick them up.
Our new Speech Therapist started with us during the week of September 15th. Amy from Pediatric Therapy Professionals was added to our EI Team to be Elizabeth's Speech Therapist. Her previous speech therapist did not have the availability in her schedule to see Elizabeth each week, as recommended by the CP Clinic at CHP. Amy showed up to her first appointment with Elizabeth, and I immediately knew that she was going to be an excellent addition to our team. During her assessment, she looked into Elizabeth's mouth and noticed that Elizabeth had an unusually high palate. Amy recommended that she see the Cleft and Craniofacial division at CHP about her palate. Amy also felt that Elizabeth seeing the Feeding and Swallowing Center was an appropriate recommendation considering her feeding, swallowing and respiratory issues. This was on a Friday evening, so I called CHP on Monday to schedule with those two departments.
The vision therapist also started in September. The Vision Therapist also was a wealth of knowledge. She felt that Elizabeth definitely needed vision therapy, and she also felt that Elizabeth had a condition known as Cerebral Vision Impairment or CVI. The Vision Therapist recommended that we see a neurologist, since we had not seen one yet. In CVI, the eyes are structurally normal, but the brain impairs the individual's ability to see due to miscommunication and structural issues in the brain. So, I called and scheduled a Neurology appointment.
I called Children's the week of September 22nd. I luckily scheduled an appointment with Cleft and Craniofacial that Thursday and the Feeding and Swallowing Center on Wednesday. I was surprised that they could see us so soon. I went down to the office and requested the days off. My parents were on a fishing trip in Canada, and my sister Holly offered to go with me to CHP for the appointments. So, Wednesday came and we went to CHP to the Feeding and Swallowing Clinic.
The Feeding and Swallowing Clinic was an interesting and informative appointment. It was a team of practitioners including a Pediatrician, Speech Therapist, Occupational Therapist, and Nutritionist. We reviewed Elizabeth's medical history, her feeding and swallowing issues and concerns, her developmental progress, and then they watched Elizabeth eat and drink. Elizabeth has always had difficulty with feeding and swallowing. In fact, the NICU staff had to teach her to suck and swallow, as she did not seem to know how to do that. Once she was home from the NICU, it was common for Elizabeth to eat slowly, become tired while eating, choke, gasp, and have liquids run out of her mouth while drinking liquids. Elizabeth also had a very strong tongue thrust that delayed us introducing her to spoon fed foods like cereal and baby food until she was almost 9 months. Even then, her spoon feeding was very uncoordinated. After the clinic practitioners watched Elizabeth eat, Aunt Holly tried to soothe her as they gave me their recommendations. The Clinic concurred that Elizabeth appeared to have several feeding and swallowing issues, and they also were concerned that she possibly was aspirating while eating. This was a major concern due to her chronic feeding and swallowing issues that were paired with chronic respiratory illnesses. They wanted us to start to thicken Elizabeth's liquids and foods with a thickener called "Simply Thick." They gave us a prescription for it, and they also wanted us to report how she was doing with the thickened liquids and purees in one week. If her respiratory symptoms were not improved within a week, then they wanted her to have a swallow study done. I thanked them for their time and advice. I left there feeling panicked and sickened over that the fact that I had never picked up on this before. I knew she had difficulty eating and swallowing, but I never felt like it was the reasoning behind her chronic respiratory problems. I knew that you could silently aspirate, but I felt like I would surely be able to hear and recognize if my own child was aspirating during feeding. Apparently, that is not the case!! The next day, on Thursday September 25th, we went to our appointment at the Cleft and Craniofacial Clinic. This appointment will always be considered, in my book at least, as one of the most influential appointments that we have had on our journey with Elizabeth.
When we went to the Cleft and Craniofacial appointment we were waiting in the room. A Speech and Language Pathology Student and a Nurse Practitioner assessed Elizabeth and reviewed her medical history with us. Then Matt Ford, the clinician that Elizabeth was supposed to see that day, entered the room. He listened as we recanted Elizabeth's history, the reasons why we were referred to him, and the information obtained at the appointment yesterday. He took notes as we talked and I could tell that his agitation was mounting as we continued to mention her respiratory issues. He stopped me and responded that he was shocked that no one had ever ordered Elizabeth to have a swallow study done before. He then checked Elizabeth over, looked in her mouth, and gave her a diagnosis that would help us to put some pieces together. Matt Ford told me that Elizabeth has a Submucous Cleft Palate, and that he wanted her to have a swallow study done ASAP. He also said that based on Elizabeth's facial structures and measurements that he would recommend that we see Medical Genetics, because he felt that she had a genetic disorder that caused the palate and her other facial and physiological symptoms. One final thing that was immensely helpful was that Matt Ford helped us to get coordinated with Visit Navigation Services through CHP. He said that the Visit Coordinator could help me schedule and coordinate all of these appointments that Elizabeth would require. I had no idea at the time how helpful this would be to me.
As we left the hospital that day, my head was spinning. I was not expecting her to have a form of cleft palate. And, how has she had this her whole life and it was never diagnosed? And, how was this contributing to her other issues? Matt Ford had explained this to me, but I knew I needed to read the literature that he sent home with us to gain a better understanding of what a Submucous Cleft Palate meant for Elizabeth. When we got home that day, I called the Visit Navigation number that Matt Ford gave to me and spoke to Heather. Heather has proved to be an incredible help to me as we navigate our way through these different departments. Not only has she helped me to scheduled multiple appointments on the same day to help us save the amount of trips down to CHP, but she also has helped to get us into departments rather quickly. She is nothing short of amazing. It is difficult as a teacher to make phone calls during the day, and she has helped to get Elizabeth scheduled into these necessary appointments and tests.
Heather, our scheduler, helped us to get a swallow study completed the day after we saw Matt Ford in Cleft and Craniofacial. So, I arranged to have coverage for my classes for the afternoon, and I left school early to go and get Elizabeth and take her down to the swallow study. The swallow study provided us with a lot of answers, insight and it also was quite terrifying to say the least. I fed Elizabeth as they took images of her feeding and swallowing. The study showed that her swallowing was an uncoordinated mess, to say the least. She had nasopharyngeal reflux, which meant that food was coming up through her throat and into her nose. She also was observed to silently aspirate during swallowing both liquids and purees. The Speech Therapist who conducted the study contacted Matt Ford with the results. He asked that I call on Monday to his office. He wanted to see Elizabeth in 1-2 weeks with their ENT, Dr. Jabbour. When I left the appointment that day, I was sickened by the fact that this whole time Elizabeth has been aspirating and struggling to swallow and feed. It could be her hyptonia or her Submucous Cleft Palate that were causing the swallowing issues, but it could also be something else. I felt lucky that she had not been critically ill, because I know that aspiration is dangerous. It was an answer that left me with more questions, which was a common feeling these days.
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