Luke was born at 41 1/2 weeks at 7 lbs 10 oz. He will be 6 years old in February. He was not breathing well when he was born and so was put on a ventilator and taken up to the Neonatal Intensive Care Unit (NICU). He was in the NICU for 3 1/2 months where he received a tracheostomy, ventilator, and g-tube while the doctors got him on the correct ventilator settings and where they clinically diagnosed him with Moebius Syndrome. Luke sees many specialists and has been formally diagnosed with Moebius Syndrome. There was a question that maybe there was more because of the breathing problems Luke has Moebius plus something but the specialists determined that all of Luke’s symptoms fell within Moebius Syndrome. Luke’s symptoms are the facial paralysis and no lateral eye movement. He does not really have a blink reflex but he does close his eyes when he sleeps. Luke has a small jaw and he didn’t have a suck or swallow reflex and maybe not a gag reflex at first but now it seems like he is doing all of those at some level. Luke also has clubbed feet,
Luke was diagnosed with mild Autism at 4 years old and we think he has Sensory Processing Disorder (SPD) but he has never been officially diagnosed. Luke was in the Early On system and is now in his 2nd year at preschool. He is in a class with special needs and mainstream children and it is great for him. The socialization and therapies provided by the school have helped Luke a lot. They have been addressing the symptoms of Autism and SPD all along. We currently have PT, OT, Speech, and Vision through the school and some extra private sessions. With the autism diagnosis we are jumping into Autism Behavioral therapy as well. I have also been working on changing his diet to help get him the right gut flora and make sure he is absorbing nutrients properly. We feed him real food blended up so changing his mix has not been too hard. We are also using therapeutic grade essential oils to help minimize his symptoms with success.
We are working with an oral therapist once a week to help him improve his jaw, tongue, and lip movement to help him to eat and speak one day within the Talk Tools program. Part of his therapy is trying to swallow small bits of foods but right now he is not able to really eat foods whether it is that he can’t because of the nerve damage or because he has never done it before and with some paresis he just needs to work out those muscles, we are hoping the later. Right now he eats through a g-tube but has no problems digesting the food and will take as much as you can give him. Luke has started to make noise around his trach, without a Passie-Muir valve (he still exhales a lot through his trach and needs that to keep pressure from building up), which has been delightful to us all. He has stepped up his vocal abilities now that his ventilator is on during the day and has been able to create different and more controled sounds.
Luke was trached since 3 weeks and vented since 4 weeks old. He weaned off his vent slowly and was off the vent during the day at around 1 ½ years old. He struggled with needing oxygen during the day until he was 2 yrs old when we did a sleep study and discovered his vent settings (which he was only on while sleeping) were not adequate. We changed things around and Luke’s days were tube free for the first time basically, he has been tube free for just a couple of days here and there but not long term. Luke was tube free from about February 2011 to September 2014. With more sleep studies we have found out that Luke has central sleep apnea and alveolar hypoventilation. Basically his brain is not communicating to the muscles and lungs to breathe adequately enough, especially at night. We went to the Center for Autonomic Medicine in Pediatrics in Chicago in September 2014 and they put him back on the vent during the day thus taking us to 24/7 venting again because he was breathing so fast, 60-90 breaths per minute. They thought that this fast breathing could wear out his diaphragm and body at any time and he could go into respiratory failure. This has been a struggle for me to come to terms with as I always thought the trach and vent would only be for a few years and here we are with Luke going to be 6 in a month and we don’t know when or if the trach and vent will ever go away. It has been hard to adjust to Luke with a vent during the day because he is an active guy. It is winter now so we haven’t explored how to get him around a playground (he loves to climb and explore) with a ventilator.
However, we are setting Luke up to get a phernic nerve pacemaker which will stimulate the diaphragm and replace his ventilator. This is technology used on other hypoventilation patients for a couple of decades but mainly with a different type of hypoventilation. I am hoping it works for Luke as it will give us all more freedom to travel and explore and for Luke to speak and eat. Right now we are waiting for Luke’s heart to go back to normal as we found that it was a little enlarged due to hypoxic episodes. The doctors say we have fixed the vent settings so this should not happen and it will actually reverse and go back to normal. They want to go into surgery with Luke in the best shape possible. We love Luke with our whole hearts and it is hard to see him have to go through all the stuff on a daily basis that comes along with a trach.
Luke’s trach has come out many times during the day and night. Yikes!!! This is super duper scary but in the moment I have just been all about getting him back. He has become unresponsive and a bad blue/gray color and I didn’t know if I was going to get him back. As I was working I was praying and I felt God telling me “Keep going, this isn’t the end yet”. I know other mom’s who have not been so fortunate and lost their little ones. I can’t being to understand that but I do know the huge responsibility and stress of being in charge of your child’s airway (as another Moebius mom says). Luke pulls on his trach when he gets really mad but we have been working on it with school therapists and at home and we have not had many problems lately. Praise the Lord! His trach has come out but it has been other more him getting tangled reasons. I hope that never comes out again but we will do what we do to get it back if it does. We have nursing 12 hours through the night, every night. I love the security of them but it can be hard to have people always in your house. Thankfully they are good people and Luke loves his nurses. We have recently moved to a new house with a setup that lets my husband and I have some private space other than our bedroom in our house and it is has been great.
He general has low muscle tone has delayed a lot his gross motor skills. He started sitting up unassisted around 10 months and he is still a little shaky sometimes. It also took him to around 10 months to push up with his arms while on his stomach. He is making progress it is just on “Luke time” as his physical therapist says. He started crawling at 2 years and 2.5 months old and once he figured it out he was all about the crawling. He is still a big crawler and will “run” crawl to race his 2 year old sister. A 2.5 years old he was pulling himself to a stand on furniture, and cruising furniture. He as 4 when he started standing on his own and walking. Now at 5.5 he can walk longer distances on his own although he is still wobbly. He can stand for longer in one place and he is moving better and voluntarily playing in a high kneel. A few months ago he was put back on the vent during the day but he is doing great with some carts for the vent that my husband made so he can still move around on his own.
He also has club feet which have been corrected with 3+ months of casting, Achilles’s tendon clips and now shoes with a bar by the Ponseti method. He wore AFOs until he was 5 yeas old and he has now been about 6 months with no AFOs and is latest checkup says he is still looking good. Some of his gross motor delays could be because he didn’t see his feet for more than an hour a day, if that until he was around 9 moths old.
As far as communication, Luke has not let his lack of facial expression and inability to make sounds inhibit his communication much. Luke has been using sign language since he was 5 ½ months. I know some kids who don’t really catch on to sign language but Luke I think wanted so bad to communicate he was all about it and still is. He has over 100 signs and as his core is getting stronger his fine motor skills are getting better and he is signing more detailed signs. We have even figured out the unconventional ones like “suction”. We are currently using an iPad with Proloquo2go. Luke does really well with the iPad but still needs lot of promoting. At school, therapy, and at home we are working on getting him very fluent with the iPad and doing more than requesting things but actually commenting and carrying on a conversation. Luke LOVES to read and count as well as letters and numbers. He is very smart (I may be biased) and is even reading.
Luke has glasses because he is far-sighted, not due to Moebius but just our family genetics. However, they also help correct his crossed eyes and the doctor says that as long as the glasses help no surgery is necessary for them.
Luke has been sick on and off but we have only had one trip back to the hospital in the first year and after that we have been dealing with sickness at home and it seems that from about 2 ½ on he has been really healthy, we are praying for a good winter.
Some days are rough dealing with Luke and all that goes with him and hurts to see him with so much life and death medical intervention. He is really what I would say is “stable” right now but the threat of the trach coming out is there all the time. Sometimes it is good to look at the big picture and know that Luke will probably not remember much the early stuff, if any of this when he is older. And that things will get better as time wears on. In five years we could be vent and trach free. Yeah we will always be dealing with the Moebius issues that go with facial paralysis and eye problems but the breathing issues have seemed larger. We are just getting to the point where I feel like I am actually taking more effort to deal with eating and speaking and gross motor skills because I feel more under control in terms of his breathing.
We have recently “discovered” therapeutic essential oils and have had great success with them. Luke has not needed his breathing medicines or oxygen since we started them and has not gotten more than a minor sickness. They also help to reduce his autism and sensory processing disorder issues. We have also found ones that help him sleep better. I am still working on the sleep essential oils as he needs different ones when he is stressed by new nurses than if his mind is just overactive. Essential oils don’t have bad side effects and I like using them as our family moves towards a chemical free lifestyle.
Luke is the joy of our lives and his grandparents. Luke now has a new little sister who does not have Moebius Syndrome. She is a smiley littler girl that has lots of smiles for her big brother. She loves to be a helper and get him things and “help” him with things. She also freely gives him hugs. He is a happy little boy and seems fairly unfazed by all the medical intervention in his life. I have learned a lot about more medical things than I knew existed but boy do I love my little boy who stares at me with his big blue eyes and smiles big smiles with them.
And if you wanted even more detail about Luke and our family check out my blog http://moebiussyndromemom.blogspot.com/or contact me as I don’t update as often as I should.
— Emily Calhoon-