Logan was born without complications but began to have feeding difficulties right away. He never took to breast feeding and when he drank a bottle he would vomit copious amounts of formula. He has always had problems with abnormal movements of his arms and legs, spasms of the legs, and inability to hold his head up for lengths of time or sit on his own.
Logan began to miss milestones early on and by the time he was six months old, his nurse practitioner was able to say that his delays were more than just "being a boy". We were sent to multiple specialist including a developmental pediatrician. This was the first doctor to admit that there was something wrong with our child. He did not know the cause but knew that his symptoms were very concerning.
We have been on the path for a diagosis since that day without success. We have some possible abnormalities in his mitochondrial DNA but so far this is not significant enough to say this is the origin of his issues. We plan to have my DNA tested to see if I am a carrier of the same abnormalities in order to determine if his abnormalities are significant.
When Logan was a year old we had a feeding tube placed. He had lost so much weight by that time that it could not be avoided. It was one of the best decisions we have made. He is now 35 pounds and growing. I can't keep clothes in the house that fit him!
During the first and second years of his life, Logan had multiple hospitalizations as well as illnesses treated at home. He had chronic bronchitis and pneumonia on several occassions. He as placed on oxygen 24/7 via a nasal cannula (the small oxygen that goes into the nose). This helped significantly but did not prevent future pneumonia's. Logan has difficulty swallowing. Most of the saliva he produces goes into his lungs as he is unable to coordinate proper swallowing. This puts him at risk for aspiration pneumonia.
In November 2012, Logan had a febrile seizure that turned into status epilepticus. This means he had a seizure lasting 2 hours that could not be stopped without some heavy duty medications. At that time he was airlifted to the hospital, spent four days there and when he took a turn for the worse was airlifted to our local children's hospital. During that hospitalization (a month and a half), we decided to have a tracheostomy placed. This is a breathing tube in the neck. It allows us to suction the saliva out of Logans airway before it pools in the lungs.
So far it was (just like the feeding tube) one of the best decisions we have ever made. Since that time, December 2010, he has only been back to the hospital for feeding tube changes and two surgeries unrelated to the trach. Zero significant respiratory infections since trach placement. Logan does receive 20 hour a day nursing care. We attribute his health to the amazing care he receives. His team is on top of every symptom and treats Logan like a prince.
Since the tracheostomy, Logan had some of his saliva glands removed. This has helped some. Most recently he had a Nissen Fundoplication. This is where the top of the stomach (the fundus) is wrapped around the esophagus. It essentially tightens up the esophagus preventing vomiting and reflux. Now Logan is able to be fed directly into his stomach insted of the jejunum (the end of the stomach/beginning of the intestines). He is allowed breaks from feeding as it does not require a continous drip. He will also absorb medicaitons better and hopefully have a feeling of fullness from the feeding.
Logan has most recently started having seizures. They started December 2013. We thought they were temper tantrums at first but then began to change in presentation to more classic like seizure activity. He had an EEG that did reflect seizure activity as well as changes on his EEG when his was at rest. Originally in 2012, his EEG showed inter ictal spiking in one of the temporal lobes of his brain. Now it is showing on both sides of the brain.
I mentioned at the beginning of this post that Logan has degeneration of the basal ganglia. This is an area of the brain where movement comes from. We found this out May 2013. It was devestating to find out as this means Logan has a life limiting disease. His brain will continue to degenerate. His current symptom of seizures is just the beginning of the unkown. We have nothing to go off of. The doctors have no answers and cannot predict his future.
Logan does have a cousin that passed away when she was two and a half. She had a suspected neurodegenerative disorder. Her's was undiagnosed just as Logan's. She had had many similar symptoms and a similar course of illness. We cannot link them at this time, but it seems to close to discount. That is why we are checking my DNA as this was my sisters child and some mitochondrial disorders are passed through the mother's DNA. I pray we find answers for our peace of mind and that of our children. It is agonizing not to know what is causing your child such distress and not having a way to fight it.
In the meantime, we live. We celebrate Logan's life and enjoy our time as a family. We live with fear and grief. Many dreams are lost but new ones have been made.
Logan is nonverbal and is unable to take food or drink by mouth due to aspiration difficulties therefore he has a feeding tube. He used to be on oxygen 24/7 as he had difficulty keeping his oxygen levels up due to the saliva aspiration into his lungs. He had been chronically ill with bronchitis and pneumonia on many occassions. He is medically fragile and requires nursing care. He is on many medications and has a suction machine and vest to assist him to clear secretions.
He has seen multiple doctors who have searched for many diseases including metabolic, mitochondrial, and neurological disorders. He has had blood tests, a skin biopsy, MRI x 2, lumbar puncture, bronchoscopy, laryngoscopy and the list goes on with no answer as of yet. His MRI's are essentially normal. I would think there would be a neurological origin which could be seen by an MRI because of his symptoms of abnormal movements, leg tremors, delayed milestones, and inability to coordinate physical tasks. Boy have I been wrong. Not all problems are diagnosed with a scan or blood test. Many hide in places such as DNA and chromosomes. His chromosome tests have been normal and we are now pursing DNA sequencing. We will continue to search for a diagnosis while attempting to remain realisitc that one may not come very easy. I have heard of families who search for years to explain their child's symptoms.
As for Logan, he is a bright eyed, sweet, and handsome young man. He may not smile with his mouth but definitely smiles with his eyes. His brown eyes melt all that come into contact with him. He is a ladies man, that is for sure! He may not speak but there is no lack of communication from him. He tells you when he is mad, when he is content (cooing at mom), relaxed (all those extra movements fade away), and happy (dancing).
My favorite moments with Logan include our cuddle time. He is still so much like a baby and I treasure having a little one that still wants to cuddle, at least sometimes! My other favorite moments are when he achieves a new milestone and when he dances. I have learned that Logan's milestones are tailored to him. I no longer look at parenting websites for information on the development of a child his age. He has his own path and achieves things in his own time. As for dancing, we learned that if he sees a show on TV with music he likes or if someone stands in front of him and dances or sings, he begins to wiggle about, stick his tongue out, and dance.
I could go on for days telling you all about him so please feel free to check in on my blog from time to time. You will get your fill of Logan stories. You will also have the opportunity to share along in our families journey as we also have a four year old daughter Lauren who is vibrant, talkative, and the best big sister a boy could ask for. She keeps us grounded when all seems out of control. She is the one in the family that does not see a disability. She does not see limitations. She sees Logan. I admire her for that and hope she never loses it.
Thank you for sharing about your beautiful boy. Many prayers to you. My son was diagnosed just after six years but very rare. However we now can make the best decisions moving forward as we know some things. Prayers to you momma and the sweet boy.
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