Everett’s Story

Our story starts way back on July 12, 2009. That was the day that I found out I was pregnant. From there we had an average pregnancy. Well, actually I should say that for my first pregnancy it was GREAT! I had no morning sickness or anything of the sort. I had no high blood pressure, blood sugar issues, or even swelling. However, at my 20 week ultrasound our lives were changed. We started out with just a normal ultrasound, and we hoped to find out the sex of the child. The baby showed off quite well and we quickly found out it was a boy! Then, the technician said something that made me a little uneasy: “I need to go get the doctor to look at something.” I tried not to worry, but even though I had not had a child before I knew it couldn’t be good news. We were told our son had a unique shape to his brain that could sometimes indicate an issue. So, we were referred to a specialist for a moreย in-depth ultrasound. About two weeks later we found ourselves at the specialist with a hopeful spirit, even though I had felt that something was not right. The specialist performed a high resolution ultrasound and found our son to have spina bifida (myelomeningocele), hydrocephalus, and Arnold-Chiari brain malformation (type II). It was a LOT of information to process. I was painted a picture of a life of destitution and helplessness. So many things I was told my child would never do and he would never walk or be intelligent. It was very black and white and I didn’t even know what to feel at that moment. We were, of course, given the opportunity to abort. I never even considered it. I had seen beautiful ultrasounds of him, felt him kick, named him… I could not even think of taking a pill to induce labor and allow him to just die. No. He had a reason…he was thriving within me and I believed he would thrive outside in the world too. The “care” I received at that specialist was not something I wanted to continue. My husband and I allowed ourselves a week to process our emotions and to get out all our anger and frustration. It was a week of hell I will never forget. Finally, we decided to read about the condition, find others like us, and find a new hospital. We found so many wonderful stories and then found that we were blessed enough to be no more than 2 hours away from aย  children’s hospital that has a spina bifida clinic and one of the top children’s neurosurgeons in the United States. We quickly called to make an appointment. The welcome we got was like night and day form the first specialist. We knew we were “home.” I continued to got there once a week for ultrasounds to check his ventricles of his brain. At about our 35 week ultrasound his ventricles had grown over that week more than they were happy to see. So we scheduled a c-section for 36 1/2 weeks. On a snowy day at the beginning of March my sweet little boy was born at a whopping 8 lbs 2oz! No complications and I did very well after surgery. He had his first surgery at 13 hours old and did very well! After that, he healed for a week before they placed the shunt. In total we were only in the NICU for 15 days. After that we came home and promptly began physical and occupational therapies through Early Intervention.

Much time passed without any problems to be had. He was doing quite well and, although behind on some milestones, he was a happy and very well behaved baby. The trouble began around his 9th month. We were at Vanderbilt for a routine check up when the neurosurgeon walked in and IMMEDIATELY told us to head to the ER. I had suspected maybe his shunt was having issues and was going to ask, but the doctor could tell form just looking at him! It was all a blur and we were quickly seen and given a full shunt series and quick scan MRI. His shunt had malfunctioned and needed to be replaced ASAP. He was in emergency surgery within hours. He did well with the surgery and we were back home after a overnight stay in the hospital. However, within two days he developed a 103.5F fever and bulging of his forehead. We quickly took him back to Vanderbilt and after another shunt series it was revealed that he had a shunt infection. He was taken into emergency surgery almost immediately and had the shunt removed and an EVD placed. He had to keep the EVD for two weeks while we waited for the infection to clear up. He was also hooked up to an IV pump via a PICC line. After the two weeks he had another shunt placed and we were sent home. I had to care for him with the PICC line for another two weeks. That was a trial I never thought I would make it through! After home health removed the PICC everything seemed to go back to normal… until two weeks later. Everett woke up with violent vomiting and a fever of 103. A quick call to the doctor and it was on the road again. Another shunt series and the verdict was: recurring shunt infection! Shunt was removed and an EVD placed for three weeks this time. Another PICC and another pump. Finally, a new shunt was placed and we came home with the PICC to care for another two weeks this time adding a drip IV I had to hook and unhook form the pump 3 times a day. By this time I felt I should just have gone to nursing school. Three days after this event he vomited everywhere again! By this time I was almost DONE with everything. ANOTHER shunt series and the verdict was: clogged shunt tubing in the abdomen. He had had so many shunt surgeries in such a short time the scar tissue had clogged the tube. Luckily, they only had to replace the tubing in the abdomen and left the brain alone for once. By this time he was 3 weeks from his 1st birthday. He made it to his first birthday with no other problems and since that string of events we have been shunt problem free! However, it is the nature of the beast and I am EVER vigilant.

At 13 months old he was fitted for his first pair of AFOs and he was awarded a loaned mobile stander to help get him on his feet. We worked very hard with the stander and he finally mastered how to move himself around in it after about 2 months. He LOVED being able to go where he wanted to go on his own! By this time we had also been diagnosed with moderate sensory processing disorder and began more aggressive occupational therapy activities.

Around 18 months we finally decided to have him circumcised. We did not have it done at the time of this birth because of his other surgeries and the fact he had to be cathed in the NICU for monitoring. He has a neurogenic bladder and they wanted to measure his urine output to make sure it was optimal before sending him home. However, he was beginning to have kidney problems and we knew catheterization would be in our future routine and I wanted to make it as easy for him as possible. It was a quick 10 minute surgery in which he was put only in twilight sleep. He did very well and healed quickly.

At around 2 years old he started to develop sleep apnea and the culprit was found to be his VERY enlarged tonsils. We ran various test and found nothing out of the ordinary so we decided to have them removed via tonsillectomy. It was during this surgery that we found that he has a slight bifid uvula as well as a submucous cleft palate. After this surgery we decided to start speech therapy as a submucous cleft palate can sometimes hinder speech as his tonsils were also hindering. At two years old he also was allowed by our insurance to apply for a wheelchair which he got 2 months after his 2nd birthday. He took to it very well having been used to moving wheels in his mobile stander. He was so FREE now and loved being in it whenever we went any where. It was so amazing to see him be able to move on his own! We also started aggressively working with a gait trainer was well as his therapist saw great potential in his walking ability and wanted him on his feet often.

At around 2 1/2 years old we began to notice one foot would not sit right in his AFOs and was beginning to turn out. So we opted for a heel cord release and he was in a bright red cast from ankle to mid-thigh for 6 week! But, it helped his foot and made it stretch so much better. The surgery lasted about 15 minutes and he never let that cast slow him down! I was afraid we would have to have it replaced before the time was up! After the cast was off Everett got a HUGE surprise in the form of being awarded one of the Ambucs Amtrykes. It was a great gift for a little boy who suffered in that cast all summer long.

At 3 years old he graduated out of the Early Intervention program and started in the Pre K program of our local elementary school. We loves it so much! He has so many friends and has gained so much confidence! He receives physical and occupational therapy in school. He no longer qualifies for speech therapy as he now speaks better than a typical child his age, but he does get to participate in a group speech session once a week. Around this time he started using a walker instead of the wheelchair and since then has not been in the wheelchair at all! Once in school he also started at a local program called Dance Your Dreams. It is an amazing program that provides an outlet for children with special needs to participate in various arts programs. They offer dance, art classes, yoga, and music. Everett has been with it since the day he turned 3 (which is the minimum age) and he loves ever. single. minute.

Around 3 1/2 years old we were given the diagnosis of chronic non-allergic rhinitis. The poor thing has been given every nasal spray and allergy medicine known to man, but he unfortunately just cannot get over the constant nose clogs, drips, sneezes, and coughs. No asthma. No allergies. We have found a few things that help, but it is just another thing on our list to learn and manage.

In the beginning of 2014 his kidneys were beginning to have an increase in dilation and we had a urodynamics series done. It showed what we had known would eventually happen. His bladder had become spastic and he was not outputting enough urine on his own. If left untreated it could have lead to kidney reflux. We were prescribed medicine to calm his bladder and also given a new routine of catheterization 4 times a day to help empty his bladder (which the medicine in turn prevents). The medicine can come with many side-effects. Luckily we have only dealt with the issue of overheating which we are learning to manage given the Southern weather we live in. We have found many ways to help keep him cooled during the hotter parts of the day. After he tuned four he was able to participate in our local Miracle League baseball and Top Soccer programs. He loves getting to hit and kick the ball!

Everett is now working hard with both quad feet canes and forearm crutches. We are putting a lift on one of his shoes to help manage the 1/4 inch difference in his leg lengths.

(1/9/2016 update) A quick update to Everett’s story! Everett has been fully walking with his forearm crutches for a year now! He started Kindergarten back in August and had a fantastic first semester ๐Ÿ™‚ But the most exciting news is that cathing 4 times a day has been keeping him fairly dry so we were ready to add enemas to the regiment. We do an enema at night now 5 times a week. It takes about an hour from start to finish, but he is such a trooper about it. Thank good was for tablets! Well, those have been keeping him accident free for 3 months now so we started testing underwear during the day with an incontinence pad. It’s been working amazingly, and he is so proud to have “big boy underwear” now! It makes me so happy ๐Ÿ™‚ A trip to Spina Bifida Clinic last month revealed a tethered cord on the MRI. Right now it is a wait and see with what to do with it. Since it seems to be causing no symptoms at the moment we are waiting on surgery. His shunt also seems to y age plenty of room to grow so no immediate plans to replace that either any time soon. Which I am grateful for…not ready to rush to surgery #14 anytime soon! He is currently working on free standing (standing without any assistance). He can do so for up to 10 seconds now! He is doing great in kindergarten…his test score last week was 19/20 ๐Ÿ™‚ He has so many friends and his aide and teacher are amazing!

This is Everett’s story so far–he’s always making progress! Thank you for reading my amazing boy’s story. I will continue to update his story as we continue to progress ๐Ÿ™‚

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