Polymicrogyria

Poly = many  micro = small  gyria = wrinkles   in the brain.

That is the brain disorder my son was born with.  Truthfully for us, it is not a scary diagnosis.  Polymicrogyria can be a very scary disorder though, it all depends on how much of the brain is affected.  Greysen is lucky that he has it in one fairly tiny area on one side of his brain.  He can do everything a normal 18m old can do - just at a slightly delayed timeline.  There are some people with a profound disorder called bilateral persivilian  polymicrogyria, as well as bilateral polymicrogyria.  The youth who have those two versions of pmg are usually non verbal, wheelchair bound, cognitive delayed, and have other health problems as well.  Most people who have the 2 versions mentioned about have a lot of seizure activity, which then harms the brain further. Some children pass away at a young age because of seizures caused by PMG. It can be a very sad diagnosis.

So how does PMG effect Greysen?  Well, we have only had developmental challenges, but will likely have educational challenges once entering school due to the area of his brain affected & the general thought he probably has some amount of brain cell disorganization.  We are lucky he has not had a seizure yet (although we did have seizure scare early on)  but he has a much higher than normal risk of having one.  But the good thing about PMG is it is not a degenerative disorder.  Once the damage is done, it is done. Seizures can cause more damage to the brain though. 

So is Greysen in therapy? What is the outcome?  Greysen currently is not in therapy.  He graduated PT. He completed all his goals.  He started PT when he was 9m old. He was not crawling & had mastered sitting just 2 months earlier when we started.  He also started speech therapy about the same time & has since completed those goals as well.  He is on a recurring check for both speech & PT.  He is also followed by a developmental team from his birth hospital. Recently had an eval from them & they are concerned he is behind on knee strength & agree his arm/hand favoritism is a little odd.  We know he will need an occasional "tweeking" of therapy.  Knee therapy will be conducted at home by mama...  Pretty much have to have him walk up & down steps-not crawl. 

The outcome for Greysen is unknown. At this rate - good with a few set backs here and there.  The real question is will he have seizures? That we wont know until he has one.  He likely will have trouble with school. Probably wont qualify for an iep (we have time to guess if needed) but may need extra teaching time.  His PMG is unilateral frontal, so that area of the brain is the reading/writting/general learning delays.

When we got the call for Greysen we were beyond scared & kinda stumped.  We were told he would need SOO much therapy - way more than he has had. And also we were told we would not need to be followed by a neuro - wich we were like huh? In the end he got a neuro after his hospital adventure @ 3m & we have been on the right track!

Greysen also has two other brain malformations that likly wont affect him, but may affect him.  He has absence of the septum pellucidum & partial agenesis of the corpus callosum.  So in other words he does not have as many wires connecting the 2 halves of his brain as he should. He also does not have the coating that covers inbetween the two halves of the brain & this covering covers part of the corpus callosum. These two items should have very little affect to him!  

If you want to read more about PMG please check out the following links!
http://pmgawareness.org/
http://raisingdanielhasselberger.blogspot.com/   she has a youtube as well. Her son is way at the other end of pmg
http://www.schuylersmonsterblog.com/ - he has also written a book about his daughter who has bilateral persiilan pmg

The other "A" word

So forgive me!  I really didn't blog much when Greysen (Tbug) was in our home, since we were busy with a lot of medical stuff for both kids. 

We were placed with Greysen very shortly after Dalton's first birthday. Greysen was a 1 month old & yes I know... my kids are super close, yup i know.  We were told in broad strokes of what Greysen had medically wrong, but finite details were never covered.  We were only the foster parents & the interested relative was going to take him between 1-3 months from then...

G got really sick at about 3 months & even had a 2 night (ehm technically 3 if you count the fact we didn't get a room until 2am the next day after we came to the er.) hospital stay.  A crap load of tests were run. We were asked if he had brain abnormalities, we said yes, but we didn't know what, which is the worst things to say about your kid... but we really didn't know. Anyhow test after test came back normal, they did a sedation mri after tracking biomom down.  We got clearer info about his brain. Gotta say we were kinda scared for his future & we still are.  Bottom line, one area of his brain has more little ripples than it should. He has two other minor brain malformations that really shouldnt effect him. But he does have a higher than normal risk of seisures - so we are careful!

That same summer (last summer) we had questions about Dalton & our pediatrition was in disbelief of what I was thinking. But being the people who know our son best, we went and got him evaluated.  We had discussed a lot privately & even taken M-Chat test/evaul in our home before getting him evaluated.  Yep he came back with an autism dx. And a little higher on the spectrum than we thought.  We knew in our hearts he was autistic before we were told so.  While we "knew" it, it was pretty hard for someone to actually tell us as such. 

Many people think we are crazy. Many people do not see how he can have this diagnosis - he looks perfect after all!  Autism for some is a somewhat hidden disorder.  It effects the brain & if you don't know what you're looking for you don't see it. 

Some things that Dalton does is considered "stimming."  He flaps his arms while excited, lines things up, needs to kick/jump to wind himself down, and others.  He is a bolter, gets quiet & non verbal in somewhat loud environments (think a bday party), stripping clothes often because of the tag-is always irritated with tags. Refuses toothbrushing (unless it is on his terms ...doesnt work well)  Hates hair combing, prefers to avoid body contact w/ others & more.  With all that makes him unique, I wouldn't change him for the world, I love him dearly.

Our biggest challenge now with him is  getting him services.... We currently are waiting to wait....
So I will be trying some at home ideas to improve his speech & help him with sensory issues.  Our short term goal is to get his iep started in fall & hopefully get him enrolled in school in January.

Kinda jumping around.  After we got Dalton diagnosed we switched to a new (awesome) speech therapy program that we had finally gotten Greysen into.  The months kept ticking along. Birthmom was not involved in the case for Greysen at all, but she kept mentioning guardianship -that she is willing to give us gaurdianship.  That doesnt exactly work for her to do that for us as we didnt know her before his birh as i guess that is part of the rule of who can get gaurdianship.  Anyhow, we went to court in late 2013 with the hopes she would voluntarily give up her rights. It was highley thought she would.  She didn't.  We went back to court late january 2014 kind of unsure how the case was going to progress. Sure enough, she decided to put Greysen first & surrender her rights.  We were unsure if she would appeal, but she didn't. So we adopted our son Greysen in early april & life has continued ticking on!

Very shortly after we adopted Greysen we closed our home & license.  I have a different perspective going through this than I did when I started.  I personally think in 5-10 years from now, we will open our home again, but even if we don't I will volunteer or be involved somehow in the foster system.  It is one screwed up system, but I was blessed with two little boys.

Ok so were is this blog going? I started this about when we started the adoption journey & now I am done.  Well I hope to bring daily life to this blog. I hope to share some ideas we are using for the kids to help them learn. I hope to bring the ups & downs of life with 2 special needs kiddos!  Stay tuned :)