Hannah 7 months

It's hard to believe Hannah is already 7 months old!  I reread her sixth month post and couldn't believe all the changes and updates from the past month!  I've felt like it's been a whirlwind, but truly didn't realize how much has happened in such a short period of time. 

I had a hard time taking a picture of her since she's not sitting up yet and when she lays on the ground, her glasses move off her eyes.  So I had tried having Jenna sit behind her.

We met with the Developmental Pediatric Specialist (Dr. Amisola) just after Hannah turned 6-months old.  She was quite concerned for Hannah.  She diagnosed her with microcephaly (small head), congenital hypertonia (stiffness), and global developmental delay.  We filled out a questionnaire that identified Hannah to be developmentally delayed and exhibiting characteristics more in line with that of a newborn to three month old (at six months of age).  Dr. Amisola then sent a referral to 1) begin Physical and Occupational therapy through United Rehabilitation Services in Dayton; 2) have an EEG done; 3) meet with a neurologist, and 4) have bloodwork done to rule out infectious diseases.  Bloodwork was done that day and we got the results the following week that everything came back normal. 

Two days later Hannah had an MRI done.  She did well and we were told we should get results the following day.  She also met with the eye doctor (Dr. Bloom) at Children's to discuss her crossed eyes.  As you can see, Dr. Bloom diagnosed her with strabismus (crossed eyes) and wants her to wear glasses for two weeks to see if they help correct the issue.  The glasses are adorable on her, although slightly annoying to keep aligned on her face, especially since she's not sitting up yet.  He told us that if the glasses do not help, then she'll have to have eye surgery to correct the eyes.

Smile!

 The following day I received a phone call from Hannah's pediatrician (Dr. Weber) with the results of the MRI.  The results were not what we were hoping for.  He read the radiologist's write-up from the MRI, but the main points were 1) her head is "quite small"; 2) the corpus callosum (nerve threads in the middle of the brain that connect the right and left hemispheres) is "extremely thin", and 3) the right front area was damaged.  All of these findings are consistent with birth asphyxia (lack of oxygen to the brain).   At that moment I felt like in the movies where everything is blurry and rushing by the person as they're moving in slow motion.  Question after question flooded my mind as I tried to make sense of it all.  I called Drew and he decided to come home from work so we could meet with Dr. Weber that afternoon.  At the meeting he gave us a copy of the report and drew pictures to help us understand it better. He hadn't seen any of the images so he could only go off of what was written.  We left the meeting feeling scared and discouraged.  At this point things sounded pretty bad and we still had no idea what this meant for Hannah.  Our meeting with the neurologist was scheduled for Wednesday which seemed like an eternity away.  I called and shared that we had received some difficult news and asked if there was any way to get in sooner.  So they moved our appointment up to Monday.  Thank goodness!

Monday came and our meeting with the neurologist (Dr. Kabbani) went very well.  He looked at the scans and acknowledged the damage on her brain.  One of our first questions was whether she has Cerebral Palsy (CP) - something we've been wondering about for a while.  He said yes, she does have CP, but based on the scans and his observations of her, he said she is MILD.  A huge weight was lifted when we heard those words.  MILD.  Not moderate, not severe...mild.  Praise.the.Lord!!!!  And actually the three main points from the radiologist's write-up of the MRI were not significant in the neurologist's eyes.  He wasn't concerned about the extremely thin corpus callosum or that her brain is small.  And the damage is actually in the back of the brain and more on the right side than the left.  He told us he always encourages second opinions, so we're getting one down at Cincinnati Children's Hospital on October 16th.  We still have some questions and concerns about the MRI results, so it will be good to have a 2nd person (hopefully) confirm the good news we received from Dr. Kabbani.  Also, he said that based on the scans "something" happened mid-pregnancy that caused the damage.  We have no idea what happened, and probably never will, but that's alright.  It was nothing that we did or could have prevented.


The next two days we had Hannah's physical and occupational therapy evaluations and then she had an EEG and VEP (Visual Evoked Potential) test on Friday. The VEP test tells the doctor whether there are any abnormalities in the nerve pathway from the eye to the occipital cortex (back of the brain).  Her EEG came back normal and we haven't gotten the results of the VEP yet, which I assume means it came back normal.  I have a call in to the doctor to find out the results, so I imagine we'll find out soon.

She's a little drool monster lately!  No teeth yet, but lots of drool.  By the time I finished her "photo shoot", her 7-month sticker was soaked and ripped into pieces when I tried taking it off her shirt. 

Then the following week was lots and lots of  phone calls, appointment scheduling, therapy sessions, and a meeting with Early Intervention/Help Me Grow (the free therapy program through the county).  We also met with Dr. Bloom again to see if Hannah's glasses had helped at all.  Apparently they had not, so she is scheduled for eye surgery October 17th.  It's a fairly common surgery and very quick.  He said it takes 15 minutes to put her under and then 15 minutes to do the surgery.  Basically there's a muscle on the side of the eye that is pulling her eye inward, so he cuts the muscles and reattaches it back further.  Then it's up to the brain to "lock" the eyes in to place (facing forward).  If the brain doesn't lock them in, then her eyes will still be crossed and she'll have to continue wearing glasses until she's about 9 years of age.  She'll be wearing her glasses up until the surgery and then at least two weeks following surgery.

So happy!!

This past week I met the therapist from Early Intervention that will be coming to our home to work with Hannah, so we'll begin that therapy next week.  As of now, Hannah goes to physical and occupational therapy at United Rehabilitation Services each week (two separate days) and then will also see the therapist from Early Intervention.  Then of course we work with her at home as well.  I'm realizing just how slow this process will be.  Our goals right now are to work on opening her hands, grasping and reaching for objects, rolling over, and then sitting up.  Hannah's made some progress mostly with her head control, but it's just so hard not to compare her to other children her age. I'm realizing more and more just how much of a process this will be - lots of time and lots of patience. 

I already have a huge list of questions for when we meet with the CP Team in December (can I just say how frustrating it is that it takes 3 months to see a doctor?!  Ugh!)  The CP Team sent us a book on Cerebral Palsy though and it has been wonderful for us.  Lots of information! 

I had a really hard time propping her in the rocking chair.  Her body was very stiff and so I couldn't get her to bend completely at the hips, hence the sliding and slouching.

So we begin this road of Cerebral Palsy.  For those not familiar with CP, here's a great blog post explaining it in simple terms. 

There's so much to learn and I know we will be encountering new issues and problems as we go along.  We're already hitting on one just recently as we're having trouble spoon feeding Hannah.  She has what I've learned is called  "tongue thrusting" where she pushes her tongue out quite a bit with (or without) food.  So it's been quite challenging getting food in her mouth.  Plus, she gags quite easily.  Now to figure out how to overcome the tongue thrusting.  Thankfully our home therapist will be working with us on that.

So lots to learn.  We're trying to take it one day at a time and not get too overwhelmed by it all.  You don't ever plan on your children having a disability, so we're having to readjust our thinking and even readjust plans for our family.  But she's WORTH it all. 

I've said it before, but we feel so blessed to have Hannah in our lives.  She is such a joy and worth all the appointments, tests, therapy sessions, and unknowns.  Happy 7 months, baby girl!  YOU.ARE.LOVED!! :)