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Tuesday, November 19, 2013

Blue Eyes

In my last post, I wrote all about my twin son, Chub-Chub and how he is developing so well.  My other son, Miracle Man, on the other hand, has had so many struggles over the past two years.  Of course, you may have read all about his heart surgery at 7 weeks old.  Well, since that time, his heart has been doing fine.  He still has a few heart issues that continue to be monitored, and at some point in his life (possibly when he's an adult?), he will have to have another heart surgery.  But, right now his heart is functioning properly and he was cleared by his cardiologist to do anything!  Yay!!

More recently, though, Miracle Man has been diagnosed with developmental delay.  At first, I really didn't understand what that meant.  And, truthfully, it is a diagnosis that means different things for different people.  It depends on each individual child.  For Miracle Man, it has meant (so far), that he started receiving speech therapy and physical therapy right after he turned one.  And at the time, he received each of the services 2 times per week.  After the first month or two of therapy, he had made many gains and we were all very proud of him!

About another month or two later, I noticed that he had plateaued and I requested an increase in services for him.  We are very  fortunate  in this difficult economic time, that the county we live in provides these services for free , and that they will do whatever they can  to see that the children with special needs receive all of the services that they should have.  So, an increase in speech therapy to 3 times per week was granted.  And we were grateful and thrilled!  

By the time Miracle Man's 6 month evaluation came up, however, he hadn't made very good progress, even with the increase in services.  So now, we headed on down the path of "Plan B", which meant that, in addition to the 3x/week of speech and 2x/week of physical therapy, Miracle Man would also start receiving occupational therapy 2x/week, special education 1x/week, and  he would begin attending what is called a Toddler Playgroup 2x/week for summer school.  Whew!  That's a lot  of appointments to keep track of...especially if there were any changes in the schedule!

For the entire spring and summer this year, our lives revolved around Miracle Man's schedule.  Sometimes it could get frustrating, because it was difficult to meet the needs of Chub-Chub and Little Miss, while  meeting Miracle Man's.  For instance, trying to fit in fun summer activities for my other children around his hectic therapy schedule was very challenging.  We did do things like attend our library's weekly story hour and go geocaching; and we were  able to make it to a museum and to the park a few times over the summer. But many  of our original "fun" plans had to take a back seat.  Miracle Man needed his therapies, and it was our job to accommodate him and give him everything he needed to make gains.  And he really did  make gains over the summer!  Naturally, we are very grateful to the county we live in and all of the wonderful therapists who have worked with him along the way.  And I feel it is important for me to say this:  I am NOT, by any means complaining...merely stating what our  life is like with our child who has developmental delay. 

Throughout the spring and summer, Miracle Man also had many doctor's appointments going on, as well.  We had started seeing a developmental pediatrician several months back, and had a follow-up to go to.  The cardiologist was on the schedule, as well.  Additionally, Miracle Man saw an ophthalmologist, and had some additional testing done through the geneticist, which I will discuss below.  Geesh!  Just keeping track of all of his doctors, therapists, and appointments can be overwhelming at times!

In addition, around the time of Miracle Man's 6 month evaluation, he had also started having seizures, so that necessitated a trip to the neurologist.  It also ultimately brought on:  a sleep-deprived EEG and an MRI.  The EEG ended up being "normal", but that was to be expected, since he didn't have a seizure during the test (and I had figured he wouldn't have one because his seizures seem to coincide with a bump on the head).  The MRI, however, showed fluid build-up behind his ears, and a smaller-than-normal pituitary gland...aka More Blood Work!  This poor little guy was tortured this summer!  :(  As of right now, the pituitary gland is functioning normally, Thank  Goodness !  But, it is something that will have to continue to be monitored over time.  As far as the fluid behind the ears was concerned, we had to make an appointment with an ENT, which took place earlier in the fall...and resulted in tubes being surgically placed in his ears. 

Anyway, with the delays we were seeing and all of his medical needs, his therapy team agreed that he should attend the Toddler Playgroup 5 days a week in the fall.  Originally, I was supposed to go back to work in the fall, but Miracle Man's schedule necessitated a request for an extended leave of absence to care for him.  Luckily it was granted, something for which I am/will be eternally  grateful !



So, since Miracle Man was born, he has had birth defects, many different developmental delays, the seizures, and he also has some sensory processing issues.  For example, I simply cannot vacuum around him.  He completely FrEaKs out!  And then he is inconsolable for quite  a long period of time.  Anyway, despite all of the concerns the doctors have, he is still a mystery to all of us.  We do not yet have a diagnosis for him (other than developmental delay).

Throughout the spring and summer, I was in constant contact with the geneticist's office while they were trying to fight our insurance company for approval of a specific genetic test.  They were looking into a something called Greig Cephalopolysyndactyly syndrome.  Being a rare genetic disorder, there was very little information about it on the internet, but what little I did find seemed like it could  fit the bill.  Once we finally got the approval from the insurance company and had the blood work done, it was a matter of w.a.i.t.i.n.g. for the results.  It took a few weeks and I held my breath when the geneticist called me and told me...it was....negative !

Great news, right!?  Well, not exactly.  You see, the problem is that, although he didn't have this particular  syndrome, the doctors are all convinced that he does have some  syndrome.  So now we are back to the drawing board, trying to figure out the mystery of my little Miracle Man and what it might mean for his future.

Regardless of what that syndrome ends up being, Miracle Man is such a blessing!  He is an amazing little guy with such a sweet personality!  He is laid-back, loving, innocence...with *bright* blue eyes...the kind of eyes that make your heart melt.  And his smile and magical laughter can light up the room.  He is the happiest little toddler I know!



Until next time,

MM 




4 comments:

  1. Miracle Man, Chub-Chub and Little Miss are all awesome. Big love to you all.

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  2. Thank you so much, Dina! I'm feelin' the love! :)

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  3. Miracle Man is a special guy, so sweet. I miss his snuggles... You are a champion (Marathon Momma), despite how hard it feels at times...

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    Replies
    1. Thank you, Anonymous Friend. He misses you, too! I am grateful for your support!

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