‘You shouldn’t own a nice truck like that if you’re asking for help with medical funds.’ They don’t know about the 8 appointments a week.’: Mom to two medically complex children says ‘we are not going to stop our lives’

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“Everyone always says, ‘I don’t know how you do it.’ It’s simple. I do it because it’s what is best for Sophia and Grason. They need to see these specialists that are 45 miles away. They need their therapy sessions that are 30 miles away, two to three times a week. It’s all I know. I’ve been doing this ever since Sophia was born, almost ten years ago.

We found out Sophia had Microcephaly less than 24 hours after her birth. Labor was induced just before thirty-eight weeks as she was measuring small and low on amniotic fluid. She was 6 pounds, 4 ounces, and 18.5 inches long. She was beautiful and healthy! The next day, we got the news she had Microcephaly. We were in disbelief and didn’t understand what this diagnosis meant. Then all the appointments started — Neurologists, MRI, CT scans, Genetics, E.N.T., etc. As she got older, more doctors and diagnoses were added: Sensory Processing Disorder, ASD, Chronic Constipation, ADHD, Developmental Delay, and Obstructive Sleep Apnea.

Courtesy of Amanda Collis

During Sophia’s first year of life, we visited the pediatrician’s office multiple times each month for recurrent ear infections. Finally, after about twenty ear infections (we hoped they would stop as she grew), it was decided she needed tubes in her ears. Tubes did the trick and ear infections were very rare after. Then, we discovered she had Obstructive Sleep Apnea. She then had her tonsils and adenoids removed. After this surgery, the Sleep Apnea was no longer there. A year or two later, there were concerns with her sleeping and another sleep study was done. The results showed Obstructive Sleep Apnea was back. She started on an Apnea machine and still uses it now.

I have learned to be her advocate, pushing for answers, more tests, and not taking ‘NO’ for an answer when I knew it was not right. We pushed for another MRI because we just knew there was more there, and we finally got approval after several years. Come to find out, the second MRI showed Grey Matter Heterotopia and Pachygyria. We then pushed for an Autism diagnosis because we knew she had it. After having testing done with four providers, she got the diagnosis! We cried happy tears of relief she could finally get services she needs.

Courtesy of Amanda Collis

Finally, after several genetic tests, Sophia’s final diagnosis is Primary Microcephaly Type II Recessive. It was a relief to finally get the answer to the cause of her condition. She has a change and a deletion in her WDR62 gene, one from mom and one from dad.

There has been a lot of stress, frustration, and tears with not knowing how we can pay for medical costs that aren’t covered by insurance, special equipment like AFO’s, compression vests, weighted blankets, and fuel to get to appointments.

Courtesy of Amanda Collis

When Sophia was about two, everyone started asking when we were having another baby. Our answer was, ‘When we get Sophia figured out. It’s not fair to bring another baby in our lives right now when all of our attention is on her.’ After a while, we discovered no time was a good time, and if we wanted another child, we needed to take that leap. Grason was born on July 18, 2013, when Sophia was 3. He was delivered naturally around 38 weeks, weighing 7 pounds, 1 ounce, and 18.5 inches. Again, my baby was beautiful and healthy!

When Grason was an infant, we knew he was not a typical child either. He did not like loud noises and he was very fussy in loud environments. As he got older, he did not like crowds of people. He hid and avoided groups of people or people he didn’t know. We noticed flapping, bouncing, and other characteristics of ASD. He was tested at 4 years old and diagnosed with Autism Spectrum Disorder. Again, we were relieved he would get the services he needs. Then we started the worst year of ABA (Applied Behavioral Analysis). It was one thing after another. Clinicians would not listen to my concerns and behavior therapists threatened him. We were lucky to have one great behavioral therapist who stayed with him through this journey.

Courtesy of Amanda Collis

Grason’s first year of school was really rough (I homeschool both kids). He just couldn’t concentrate and would get very frustrated. ADHD was something we knew he had but weren’t sure if we wanted to medicate him. It got to the point where there was no more questioning. He needed medication to process information. Over the last summer, we started him on Guanfacine ER. School is so much more successful for him this year! What a relief!

The behaviors from both are heartbreaking. My daughter is the worst with self-injurious behaviors, hurting others and pets. My son only does the injurious behaviors to others. It is a daily struggle with feelings being hurt and many tears are shed.

Courtesy of Amanda Collis

Some weeks are just filled with appointments after appointments. I never imagined I would be a mom who was traveling to the big city several times a month to the Children’s Hospital for appointments, or the one taking kids to therapy appointments several times a week. Right now Grason does his OT and Speech therapies on Monday. Tuesday, Sophia has her Speech and OT, and on Wednesday Sophia has PT. Then, add on any extra follow up appointments with specialists and pediatricians in there. There have been times where we have had eight appointments in a week’s time.

Both kids need either ABA or Behavior counseling. ABA is VERY expensive and we would never be able to pay for it out of pocket. We have to wait until the deductible is met and then still have to pay a portion. Then there is the 5 to 18-month waitlist to get in. It’s a struggle knowing your kids need services but cannot get them due to those factors. We are trying our best to get them everything they need.

It’s hard thinking Sophia most likely will not be able to live on her own or care for herself. I feel so sad thinking about what will happen to her when we are gone. It makes me sad knowing I will not be able to care for her until the end of her life. We want her to be well taken care of and assured she is not abused or neglected.

Courtesy of Amanda Collis

When it came time for Sophia to start school, we visited a local Special Ed Program. We were not the happiest with it and didn’t like the fact she couldn’t tell us what happened at school. ‘Mom, the kids were mean to me.’ We both decided it would be best to homeschool. It has been a great experience, even though there are some really rough days. Grason is homeschooled as well. This works really well for all of us. They don’t miss tons of school because of all the appointments they have. It’s flexible!

Safety with Sophia is extremely difficult. She does not understand the things that can and will hurt her. She thinks she can use a sharp knife on her own! She has scared us many times. We have magnetic locks on our cupboards and our pantry has a key lock. She even has walked down our long driveway towards the road without an adult. There have been a few times she has walked out of the house and we didn’t know it. She’s quiet and fast. She will open our doors if someone knocks or rings the doorbell, not being scared it might be a complete stranger. Grason, on the other hand, is the shy one and is worried, ‘What if this happens?’ I think this is much better than no fear at all. We need to alarms on our windows and doors that will alarm when Sophia opens them, but the cost is outrageous. We want to protect our kids as much as possible, but the price gets in our way of doing this.

Courtesy of Amanda Collis

Currently, we are in another medical situation where were think Sophia needs to see another neurologist for a second opinion. Sophia has been having these episodes where she ‘passes out.’ It has been happening occasionally for about five years now. It has happened in medical offices, at home, in the car. She gets agitated and irritable, then passes out. Her face and lips turn pure white. This lasts for 5 to 30 minutes. Sometimes she vomits during this. She is usually very lethargic and confused when she does actually respond to us talking to her. There was a time this happened right before her GI appointment. Her blood pressure was very low when we got there. That was twenty minutes after having an episode. It’s pretty scary, especially since she has abnormal EGG’s and her risk of seizure is greater due to her Microcephaly.

Neurology saw a video just recently of an episode but said it’s not a seizure. Well, that’s good, but what is it? Why is she doing this? It’s been years with no answers. I think it’s time to take our concerns elsewhere.

Occasionally, we do a fundraiser to help minimize some of the additional costs. A few years back when doing one, we actually had family tell us we should give up and sell some of our belongings. Belongings that we don’t owe anyone. It was very hurtful hearing this family tell us that. If they were in the same situation, would they get rid of everything they own? We are not going to stop our lives because we have two special needs kids. We want to bring them up doing the fun things we used to do as kids: camping, traveling, going to the Zoo, parks, and beaches. THEY NEED TO BE KIDS TOO! The family said we shouldn’t have the truck we have if we have to ask for help. How do we get our kids to appointments if we do not have a safe and reliable vehicle? I thought family was supposed to be helpful and supportive.

The people that matter the most are the ones who are always there when we need them. The ones who are supportive of what we do and the decisions we make. The ones that are there to help when it’s needed.

Sophia and Grason are our world! We love them for who they are!”

Courtesy of Amanda Collis
Courtesy of Amanda Collis
Courtesy of Amanda Collis

This story was submitted to Love What Matters by Amanda Collis. You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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