Tuesday, November 19, 2013

Riley Visit

We yet again made the LONG trip to Indy and -surprise surprise- we yet again survived it! I always stress so much when preparing myself for these visits, not that I assume the worse, but I do know developmental peds and our neuro surgeon are more...book, studies, research, and facts...rather than hope, promise, and accomplishments. Not that that is a bad thing, we all need to know facts but I think it's worth it to also look at where we started to where we are today. But, as always, I left with a happy heart and nothing but good news!

So to start the week we went to Developmental Pediatrics first. We met a resident, first only to be followed by the doctor. You remember, that Doctor? The first one we met that I swore I wouldn't see again. However, before I could even get my panties in a wad, his attitude was different, he was happy and so impressed with Blake- as he should be!!! First off Blake's height and weight, Blake was 10th percentile in weight, and..wait for it... 25th percentile in height!!! (These are BIG numbers for us, since we have never even made the charts!) All in all he seemed pleased with where Blake is developmentally, the only changes he recommends is adding speech therapy possibly starting next year, and we debated the use of a muscle relaxant drug to help with the stiffness in his left arm. I use the word debate with great emphasis...for most of the appointment the doctor, the resident and my hubby and I all weighed the pros and cons and it just seemed like everyone was 50/50. In one way it would help Blake is stretching his muscles and helping the development of them, however on the opposing side (the side Zach and I are currently on) it may hinder his progression thus far and over relax him. Zach and I chose to postpone this decision until we feel the tightness in Blake's muscle is A.) causing him pain and/or B.) We stop seeing progression and the tightness starts keeping Blake from moving forward in his gross/ fine motor developmental. The doctor and his resident both seem to agree with our choice. We are however going back to Indy sooner rather than later for a follow up early next year. All in all it was a good appointment.

Moving on to day two! We went to Blake's neurosurgeon that he has seen ever since we arrived in the NICU. But first, we had to wake up extremely early to take Blake to get another MRI of his brain to see the progression of his brain development as well as checking in on his shunt and making sure everything is properly working. Luckily it was again a fast spin MRI so no sedation needed, maybe a tissue for mom and dad as we had to listen to him scream and cry for about 10 minutes straight. But better than him having to be put to sleep for the procedure. But that's not even the hardest part. It's the reviewing of the results that is hard. This is the part Zach and I dread the most of our Indy visits. However, yet again, we were pleasantly surprised!!! Blake's doctor entered our room with a smile, announcing rather enthusiastically, how pleased and happy she was with the results. "Let's go have a look shall we?" So we followed her to this small room outside the exam room, Blake in arms. And there she pulls up not only the days MRI, last years MRI, but also Blake's First ever MRI from when he was in the NICU . It got so quiet you could hear a pin drop. That was until Zach and I moved back and forth between the three. We were amazed. Blake's first MRI showed very VERY large areas of injured brain tissue caused from the hemmorage. These were the films we refused to look at after seeing one in the NICU. We purposely removed ourselves from seeing these, they were painful, they were reminders of what could be. What Blake may never do, how much damage was done. This film is heartbreaking. Then beside it is the film from last year, a big difference, those areas were smaller, surrounded by matured brain tissue, showing development that we never thought would be there and only confirmed what Blake was exhibiting in life- WHAT AN AMAZING CHILD HE IS!!! Look at where he came from! But no way could the MRI from this visit be better, but it was! The area on his left side of his brain was completely gray (what it should look like) with only a small pinpoint of damage still showing on the scan. She explained this is showing how amazing the child's brain is, able to rewire, and redirect brain waves. (Remember I'm a cardiac nurse...the brain completely confuses me! Go figure!) the right side (remember Blake's left arm is the major effected- left leg slightly effected) still showed the same infarcted area-or damaged- area but was half the size as even last time! Zach and I were overwhelmed. So happy! Yet again, so bewildered and amazed at our son! The only slightly bad news we got, was our doctor insisting we go to the eye doctor upstairs rather than going home..BOO.. We needed to go get Blake's left eye checked out from a stye. She was concerned it had become infected. (We decided it was best to go since the developmental pediatrician had been concerned as well)

So on to another unexpected doctors appointment. Luckily our neuro doc had pulled some strings and we only had about a 10 minute wait before being seen. After a few dozen questions, a quick eye exam the diagnosis was.......Drum roll please....... A STYE! Go figure! Exactly as Zach and I said. So we were instructed to do warm compresses (which we had been doing for days now). We were given a eye ointment just to prevent infection so the appointment wasn't a total waste. Better safe than sorry right?!

And finally...after three days, we had a quick visit to the new NICU, checked in with some of Blake's nurses . After the visit we then....Big sigh....finally got to drive home! Yay!!!

In the days later, Blake's eye is still healing but looks much better!

And bigger news...we packed up the bottles and have officially switched to sippy cups! After much therapy, and many different types of cups bought we have finally mastered the skill and have moved on from bottle brushes, cleaning five million different parts to clean, and sterilizing bottle after bottle....life is sweet now all I do is rinse and throw in the dishwasher! Time saver!!!And our baby is growing too fast!

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