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Dear Friends and Family alike:
Our son Michael is now 12 years old. We had an appointment with an opthalmologist specialist on Friday the 14th because of the light sensitivity with Michael's eyes and the on-going headaches he has had for so long. The opthalmologist, Dr. Sami, was amazing. He is very knowledgeable, and we were glad to see him. We brought the MRI films of Michael's brain, pituitary and hypothalamus. As an RN and then as a parent as well, I want to see the results myself. Since we were unable to obtain a copy of the radiologists report, I thought it a good idea to get the physician's varying opinions on the MRI films themselves. I am SOOOO glad I did.
Dr. Sami was very very thorough. He checked Michael's vision, inside his eye, and even his retina. All the things a good opthalmologist should check and then some. He did look at the MRI films, and then looked a 2nd and 3rd time and some in particular. He asked us if we had some time, and said he wanted the radiologist across the street to check them. We said sure, and he literally ran out the door. When he came, he said the radiologist confirmed what he saw on the MRI. Michael has Hypoplasia of the Corpus Callosum (thinning of the corpus callosum) and Periventricular Leukomalacia (or PVL for short). Michael was premature, apparently EXTREMELY premature, one of the rare 4% of all premature babies who develop PVL. It means (as accurate as we can be with what we know of Michael's history), that he was lucky to survive and was born before his lungs were even premature, was placed either on high flow oxygen or a respirator or both until his lungs were more mature. At some point around Michael's extremely premature birth, he had ischemia in his brain. Ischemia is where brain tissue does not get enough oxygen or blood flow, and the brain tissue dies. Periventricular is the area of the brain around the ventricles. The ventricles in the brain hold cerebrospinal fluid. The corpus callosum are the fibers that connect the two halves or hemispheres of the brain together. On Michael's MRI, you can see the areas of where the brain cells died and formed cysts. The corpus callosum in normal healthy brains is decently thick, and the fibers allow information to be passed from one side of the brain to the other. In Michael's brain, it is much thinner and some of the fibers may be damaged from the ischemia. Some statistics say that PVL is as rare as 5 children in a million. With MRI technology these days able to diagnose it, it may actually be more prevalent. It explains a tremendous amount about Michael, the way he communicates, learns, language, behaviors, frustrations and coping and on and on. It is very often missed and / or misdiagnosed. PVL can often be misdiagnosed as autism or asperger's. It is very important to know that in children who are diagnosed with autism or asperger's who also have PVL that the autism or asperger's is a secondary diagnosis. This means the asperger's for example is the result of the PVL. PVL is a physical neurological diagnosis because of a physical / structural abnormality in the brain, where as autism or asperger's by itself is a psychological diagnosis. It was a tremendously important thing to find out. So, Michael will be seeing a neurologist, and we will bring the MRI films to be sure nothing else was missed as well as to his other appointments. I am sure endocrinology and rheumatology will find this very interesting, especially as we learn how this ties in to the many difficulties Michael has had since he first got sick in April.
Michael also had Retinopathy of Prematurity as an infant, but it is not active retinopathy now just something he will have to be evaluated for once a year. Retinopathy can be serious because a detached retina can cause blindness. Also, Michael is very slightly nearsighted but not anything he needs glasses for because it is mild. Another thing to keep an eye on. Michael also had a repeat Fasting Cortisol level on Friday the 14th because his last cortisol level was 1.4, very low when normal is 6-23). Cortisol is very very important in metabolism, energy, immunity, and handling stress when sick or ill. I will be anxious to hear the results of that as well. We would not be surprised if it was still low because his appetite is zero, and trying to get him to eat or interest him in anything is a challenge at best. Lack of appetite is commonly a symptom of low cortisol. His pulmonary function test also showed evidence of the fatigue Michael struggles with every day as he is unable to get the last of the air into or out of his lungs.
Ahh, deep breath. Okay, that is one. Next...
Joseph's echocardiogram came back and shows his heart has reduced function particularly in his right ventricle which is pumping the blood to his body. Normally the right ventricle only has low pressure and pumps to the lungs. So, Joseph's right ventricle has a high pressure on it because his aorta and pulmonary artery are both reversed. Low heartrates at night and early mornings as low as 39, pauses between his heartbeats of 2.4 seconds, and daily intermittent chest pain - all are not good signs. The cardiologist said that Joseph's heart WILL fail, and the question now is when. Some people live a long time up to 20 years before the heart fails, but Joseph is only 7 years old and already having problems. The options are wait until his heart fails and put him on a transplant list, or do surgery (a Double Switch operation) to repair his heart. My first reaction was that hearts are not too easy to come by, and so of course do the surgery. We have a team of cardiologists who will meet this Wednesday the 18th to discuss this, and we will be interested to learn of their opinions and recommendations. The question is when.
Ahh, Deep Breath. Okay, that is two. Next...
Joshua's eye is doing much better. Dr Sami was gracious to see him and prescribe ointment. Joshua's eye looks much much better. I am thrilled to see the redness go away, and the draining to slow down.
All in all, everyone else is doing okay. We have all recovered from our horrendous bought with the flu (all seven of us). Glad that is over.
Gabriela is enjoying her schoolwork and likes the computer best; her bipolar and ADHD are stable on Abilify and Tenex. She was changed from Seroquel earlier this year because of the weight gain Seroquel causes, and has done really well with the change. Gabriela was also accepted into Camp Opehay this summer, a camp specifically for Bipolar children. I think it will be fabulous for her to see that she is not the only child in the world who has this.
Shawna so funny. She is our little monkey who loves to climb on everything, loves snuggles and Mommy hugs and Daddy hugs, and developmentally above average especially in language development. She has learned how to take off her own diaper and all her clothes, and her new favorite thing is to run through the house naked. It is the funniest thing ever when I am trying to catch her, and she is running nude down the hall yelling and giggling with glee 'naked butt, naked butt'.
We appreciate the little things, as the gas prices are just killing us. My days off these days are filled with doctors appointments, and the parking lady at CHOC knows me as the "All Day" lady since we always need an all day parking pass. Last Friday, we were there literally from 8:00 am to 5:30 pm becuase of the many appointments.
Please pray for our finances, for the kids, and for our family, especially with Joseph facing TWO open heart surgeries. We are praying for a few miracles.
Blessings in Christ our Lord who has helped us endure, given us patience and faith, and shown us the joy in raising FIVE very special children who I am sure will make their mark and change the world for the better,
Jennifer Richardson
richardsonstudios@charter.net
www.richardsonstudios.blogspot.com
For any parent with a special needs child, adopted, biological or caretaker, you are welcome to apply to join our yahoo group. Just go to www.groups.yahoo.com and type in everychildmatters. We are a support system for parents and loved ones of these wonderful kids.
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