Well during our last visit, they asked us if we had any concerns about him and I spoke up about the fact that he only ever smiles with 1/2 of his mouth and I noticed that his eye on the same side also didn't "smile" with him either. After the normal testing we left with the information that this may be a syndromatic issue (the low tone in one side of his face) but that we were to meet with the Geneticists in 5 weeks. This information made me a bit nervous as I spent the next few days after the visit cleaning out my closets. But I was doing fine...
Then a few weeks later they sent the damn paperwork. In my opinion, as elementary as it is...they might as well have stamped "Mentally Retarded" on the front of the paperwork and sent it to us! Now if this is the case...we will deal with that and it will be okay but I really do believe that there would be a better way to do this. There were words and issues in the paperwork that were never discussed with us personally while at the appointment. When we looked these things up on the Internet the words were all associated with serious "Mental Retardation" which quite frankly is a word I never use and do not like but apparently is on the majority of legitimate syndromic websites, containing the majority of Zion's symptoms. Excuse my stupidity because I am now not sure if the word is an actual medical term (which is why I used it) or just listed on all the websites so as not to down play the serious nature of the illness to which they are referring.
I am sure it goes without saying that it is almost tortuous to give someone this information and then make them wait weeks to see the Geneticists and more than likely they will only drawl blood and then make you wait for many more weeks before actually giving you some real information.
Zion's Physical Exam stated:
Facial dysmorphism, long thin face, small jaw, left hemifacial microsomia
Jaw/mouth: low tone with open mouth, tongue protruding, left lower
Extremities: from all extremeties, some decreased truncal tone.
Neurodevelopmental Exam:
Nasal stiffness, drooling, "sloppy"eater, low tone trunk, chin/jaw. Facial assymmetry.
Neurologic Exam:
All Protective Reactions absent except lateral protective.
Summary:
Truncal hypotonia, left facial hypotonia, left henifacial microsomia, dysmorphism.
They also had many good things to say about him and there are many area's which he is progressing quite nicely! But for all of those who want the "real" deal there it is just the way that we saw it....in black and white.
With all that being said you are now caught up to date on what is the major deal in our home now-a-days.
My sweet Zion James...I found myself watching him more intently, playing with him a bit longer, holding him closer, and kissing him more frequently than the rest...just for today.My instincts seem to be a last minute attempt to live in innocence prior to that being ripped from our grasp...as I know we will never again be the same.
Do we know for absolute sure it is coming?...no. Do I feel the sweet, soft, whisperings of the Spirit that it is coming?...yes.
Am I okay with that...absolutely! He is my son...the massive undertaking it was to bring him here to our family, at this time, and with his dear sister was not a mere coincidence. It was part of a plan to which we all agreed to long ago and I do believe that this earthly body which was created especially to house his sweet spirit was also agreed to long ago.
Will there be mourning...yes. I am sure on more levels than imaginable...which is why I long for innocence for just awhile longer!
Things that are meant to be eternal in nature are too often scoffed at and ridiculed through life. That is this sad world's reality...but I must work harder and faster to fortress my home for all things eternal in nature shall find peace and rest in my home!
6 comments:
Chris, I'm so sorry that you had to get the paper work with all of the negative medical terms. Every time we meet with Doctor's for Porter they make things sound way worse than what they really are. I really hope that the genetics testing goes well and that your thoughts will be put to ease. If you ever need to chat, you have my email address or just get my phone number from Daniel. We will keep you and your family in our thoughts and prayers. Zion is beautiful and is lucky to have such a great family.
Chris, Well said. I'm glad that you posted. I've been thinking about you all lately and wondering if you'd heard anything new. Our thoughts and prayers are with you guys.
Don't you just love Megan. Honestly, they made the mold for her and broke it with her.
Aw, Chris - he is so beautiful. Inside and out, no matter what. But, you already know that. There is just something about him that takes you in though. His eyes lead to a wise spirit.
I too hope that you will get more answers without having to wait too long.
I'm glad you had a few moments to just take it all in and enjoy him.
Thank you Megan! I very well may just do that at some point...we started Zion and Cy (because she was stealing Zion's) on Chewy Tubes...They are their favorite things ever! I recognized Porter's Red one in one of his picture when he fell asleep. Does he use his for low tone or the need to chew?
Wow Chris! That's lot to take in! That paperwork with all the medical terms should never have come to you - it should have gone directly to the other doctor. Medical terms always scare the crap out of everyone - sometimes, needlessly! You have an amazing attitude and keeping that attitude will help through the tough times! My mom always told me that everything always works out in the end. That's hard to hear when you are right in the middle of a major trial but it's true! It all works out in the end, maybe not the way you thought it should, but it does!
Porter uses his chewy tube for the need to chew right now. He has started biting himself and it drives me crazy. We started him on them a long time ago to make him more aware of his mouth and the whole chewing concept. If Porter has one, Miles always takes it from him!
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