Updates, Apologies, and New Families

Dear Friends,



How do I start this post? It has been so looonnnggg since I have been in touch,(my apologies) I would like to start where I left off, but there is some catching up to do. First things first as I always say, once the holidays were over, the schedule looked so good, or so I thought. That past several months have been a time of learning for me (good and bad), the companies we at times put our trust in do not always serve us well. Making a long story short, I have been in a battle with my insurance company, and now I have come to a point of having to investigate how to bring an unpaid claim $$$ back into appeals. I am just saying I wish they would just stand behind what they said they would do, is it to much to ask these people we consider to be professional to be honest? The amount of time trying to work on this has been to much! Ok, you get the point.



It's not only the unexpected interruptions in life, but, even the expected ones that throw us off course now and then. Our Meggie has gone through approximately six weeks of seizures(more of the grand mals as of late), bed wetting, headaches, and just feeling plain fussy or off, not to mention wiped out at times after the seizures. this leaves us with questions again, is she growing? Does she have a UTI? Is she fighting any viruses? Are there any hormones that are off? What changes maybe around the corner, or is it just a round of severe seizures? Well, we did check off the possibility of a UTI with a trip to her pediatrician, later this week we will investigate more at the Endocrinology Dept. at Children's Hospital. There they may check some labs, diabetes screening, cortisol levels, as well as some other hormones, and maybe her IGF1(insulin-like growth factor) and HGH (human growth hormone), for her growth, and maybe a bone density test(to check the strength of her bones).



The seizures have been one issue, and soon it's time for her scoliosis check up, and x-rays, oh and did I mention her asthma check up, these are a few of the up and coming appointments. This is my child who definitely keeps me busy, you would not want to let your mother get board, would you. The appointments and information can become overwhelming at times, but as these children with SOD ONH (Septo Optic Dysplagia Optic Nerve Hypoplagia or ONH) get older believe it or not some of these things become routine for them and us. We all hope to get to this more peaceful routine feel sooner than later, and I can not blame anyone for that.







TO NEW PARENTS AND FAMILIES JUST LEARNING ABOUT SOD ONH or ONH




For any new comers to my blog I will try to discuss more clearly what occurred as far as lab tests, ultra sounds, CTs ect. Because there had been fluid in the ventricles of (Meggie's) brain detected on ultrasound (already at 19wks.), my husband and I were alerted to the fact there was something going on with our unborn baby. At that time I saw a Perineonatologist, who did more extensive ultrasounds, and followed me through the rest of my pregnancy as well as my
OB GYN. One of the best recommendations to me was that we find a Pediatric Neurologist for the baby, and speak to him even before the baby was born. This was recommended by our Family Dr. and that was beneficial to have him on board from the beginning, we have had the same neurologist ever since. Your neurologist will want to do a baseline CT of your child, and then will schedule follow ups as needed. Once we learned what parts of the brain were affected and or missing, we were able to learn more about how this may affect development. If your child experiences seizures, your neurologist may also schedule for them to have an EEG , which is painless, as is the CT.



The other specialists you will need to see will be a Endocrinologist, who will be able to check on the hormone levels your child will needs to have checked on at least a yearly basis, as well as their growth levels, HGH and possibly IGF1, an Opthamalogist will assist you in checking the structure of the eyes and nerves behind the eyes as well as vision testing, this can be hard, especially if your child does not speak. One of the amazing things for us was Meggie has learned to use her vision better, even though her chart says light perception, we have been working on improving the use of that vision, don't be discouraged parents!



As far as doctors go, our children may not need all the same services, it really depends on what needs your child has, and how they develop over time. Meggie for example has other issues over and above the SOD ONH, such as the scoliosis, so we see an Ortho dr. on a ongoing basis, as well as her Gastroenterologist for her G-tube check ups and diet, we also see a dietician at the same time. When Meggie got alittle older we also started to see a Psyiatrist for her equipment needs, and to have him keep tabs on her tightening muscle situation in her hip and hamstrings, this has also been a great help.



This is alot of information to absorb, but please keep in mind this happens over time, not just days or weeks, the doctors and nurses have been a great help to our family, we sooo appreciate them! Just a few other helpful pointers for you, if you have not contacted your local birth to 3 program facilitator, please, please do so sooner that later. The sooner we can get our children in for their first evaluation, the better! They will be able to recommend the appropriate therapies for your child, and your county caseworker will be able to give you information about available funding for your child.



There are may resources out there, I have listed a few at the bottom of this page, NACD, The Magic Foundation, One Small Voice, just to name a few, please check these out, there will be a lot of useful information to you for the days ahead with you child (I will try to add more in the near future). And lastly, I would just like to say there is a wide range of mild to severe when it comes to SOD ONH, I was very amazed to find out about many individuals leading happy lives despite of any challenges. Even with Meggie being more towards the severe end, we have enjoyed having her as part of our family, and cannot imagine life without her. The love and the warmth, and the contagious giggles she adds to the family are invaluable not to mention the life lessons along the way.



Please feel free to join my blog at google blogs, blog frog, or network blogs. Hope to see you soon, send me a comment!