Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, April 25, 2012

The Best Sick Day Ever

So... it finally caught up with me.  The dreaded "stomach bug" that no one wants to come to their home.  I woke up around 5am to nurse Meagan.. and I felt a little queasy.  I didn't think much of it - sometimes when I haven't eaten a lot the night before and wake up really early, I feel a little nautious.  I felt "better" and drove Kaitlin to school.  I got home and started laundry... and then I realized the nausea was here to stay.  I started to feel more and more queasy as the lunch hour approached.  I luckily had not eaten anything yet, but I felt so gross all day.  My stomach churning... feeling like I had to get sick all the time.... having to cancel my music lessons for the day..and lug through baskets of laundry to pack for our trip to Virginia.... it was a very frustrating and "blah" day to say the least.  I grabbed a bag (in case I got sick in the car)... got the kids ready to go and headed off to get Kaitlin from school.  Although I was in no mood to drive, I was a teeny bit excited because after I got Kaitlin from school we were going to get Meagan her glasses.

I pulled into the eye surgeon's office and went inside.  They had Meagan's glasses all ready for us.  They were SO cute!  Little pink wire frames ........ 

.....with little pink stars down the sides. 

They were absolutely adorable and so girly! They were a little big, so the Optician had to take them back and adjust and shorten the ear pieces.  The ones that would fit her well had a strap and pressed too much on her shunt, so we had to make these work.  He came back in a few minutes and they slipped right around Meagan's ears and fit great!  She looked so cute! There were several people in line behind us and they were all smiling at Meagan in her new specs.

She seemed to look around already when they first put the glasses on.  I took off her glasses when we got home for a second to see what she was seeing... it was definitely a lot of correction! The Eye Surgeon had told me her prescription was very strong because he's trying to salvage her muscle strength the best he can. 

We finally got home... I was still feeling badly...but you know how it is if you are a mom.  There is no time to rest, to sit down, to "recover" when you get sick.  There are still kids to tend to, house to clean, laundry to do, and many many other things.  I put Meagan in her bouncy seat and was working with her on grabbing toys.  I put a soft block in her hands and let go... she would not be able to hold on and it would drop.  So I started to push her hands together around the block so she got the sensation of "holding" something.  Each time I did it, I said "Squish!" and would laugh.  She really engaged me with her eyes and smiled.  After a few times of this.... I heard a little "Hah".... I thought... wait a minute.. is that what I think it is?

So I continued our "squish" game as I pressed her hands into the soft block toy...each time I made sure to smile big and say "Squish!" and sure enough... every time.... she chuckled!!

So as down as today started out with being so sick, it ended up being the best sick day ever.... Meagan got her glasses... and she laughed for the first time.  I hope this is the first of many laughs to come.  God is good.

Thursday, April 19, 2012

Neurology and PT

It's been quite a busy few days for Miss Meagan!  She saw her new Neurologist yesterday.  We liked Dr. Z at the old practice - his bedside manner was great and he treated Meagan with respect... BUT... since he was only a "fill-in" doctor, he didn't have direct control over a lot of things we may need done with Meagan (EEG orders, prescription refills..etc.) and since he was just out of retirement to practice again, he is quite a bit older - and we'd like to have a doctor that not only has control over all aspects of the practice, but who will also probably be able to follow Meagan for quite some time and really get to know her.

I asked around and a student of mine has a mom who is a doctor - she recommended a Neuro named Dr. B.  Then, Brian came home from work and found out a coworker of his has a Downs child who struggled with seizures and was monitored by a Neuro named Dr. F.  Both my student's mom and Brian's coworker were very happy with the Neuros they recommended and so I decided to look them up.  To my surprise, and my delight, I found out both were with the practice we had left, but that they had also left and branched off into their own practice! Then it clicked that Dr. F was always the one who had read Meagn's EEG reports, but we had just never met with him in person.  I had heard good things about him from other Hydro families as well - it was more of a dislike of the practice and how it ran that was not a good thing.  I also saw on their website that the one CNP who we had really liked had gone with them! Excellent! So now that I knew who the doctors were, had heard good things about them, and saw they were off in their own practice seperate from the old one, I had a good feeling. I called to make an appointment, and yesterday was the day!

We arrived early and handed over all our paperwork and Meagan's "book" (her medical file).  They scanned everything in and a nurse soon came out to call us back.  We went back and Meagan was weighed and measured.  Her head circumference is still 44cm .... her length is still 25 1/2 inches. .... but she gained a POUND!  A whole pound since last month - this is great news for 2 reasons... #1. I was so glad she gained some weight since she has been struggling with that... and #2. I felt so much better that her pop up seizures were simply due to lack of correct medication dose since she had gained weight.

He went through Meagan's entire file with us - from her birth until now.  He asked if we'd been over her latest scans... I said yes, but not in as much detail as I like.  He chuckled and said ok.... Dr. F started to go through her scan with us....He did say he was concerned he didn't see much brain growth from her November scan to her February scan - he said things could still change, but, it's something to watch.  He said every kid "fluffs" brain tissue differently, so we'll see what her July scan shows.  He also said her Corpus Collasum is extremely thin and small - he said probably due to all the pressure...but he can see it.  He said in her initial scans it almost looked like an HPE scan (where the CC is missing) but in her Feb scan he can see it, it is just super thin and bowed. (again, due to the pressure).  He said that he sees a few other things that may be of concern in her brain matter - but, he said he wont' give us "names" or "diagnoses" because things can change around so much, he doesn't want to confuse us, or say something and later it actually isn't what he thought.  He said unless something shows up very clearly, he probably will show restrain in giving Meagan other "diagnoses" until she's closer to 2 years old and a scan can reveal a lot more.

He really didn't tell me anything I "didn't know".... but it was more just going over what we'd had done in the past, and explaining to us in more detail what the scans meant, since our NSG tends to be more conservative and not share as much info (he doens't like to worry us). He's great and will answer any questions, but often times I think of the questions later so it was nice to have the 'in depth' discussion.

 Dr. F kept looking at Meagan's birth scans and pictures and was just so happy with how far she's come.  He couldn't believe he was looking at the same baby that had the scan he was looking at.  He noticed her muscle tone was pretty tight, which is ok for now - hopefully we'll get a lot out of her at PT..etc.  We just have to make sure it doesn't continue to tighten and become spastic. He said if we can keep those seizures at bay, he hopes she will continue to make good strides.  He was loving her little smile and talked to her quite a bit.

He said to start Meagan on her new dose of medicine that night, and hopefully we'd see her seizures go away again after her body adjusted.  I was so glad she'd gained weight.  She responded so well to the Keppra, that I think this new dose will do the trick again and we'll be back in business.  He said to come back in 2 months and he'd love to re-check her development and talk about the plan from there.  She is scheduled for another scan in July to check on her skull sutures and if they have fused or not, so we'll find out more on that this summer.

ALl in all it was a great visit - Dr. F was extremely attentive, answered all questions we had, took his time with us, and was very loving and engaged with Meagan.  I think we are in a good place right now with a Neuro (FINALLY).  He seemed very on top of things, and told us if there were any issues with her meds getting changed, to please call him right away.  He also said if we noticed any other kinds of strange movements or seizures start, to please call right away so they can check her out.

Fast forward to this morning, Meagan had PT... she was a bit "drugged" because of her new dose of meds... but she was happy and NOT sleeping like she was when they'd up her Phenobarb. (I'm so glad I got her off that stuff).  SHe was lazy though!! She wouldn't roll, and was not interested in toys.  After working with her for a bit, her PT decided to put her on the ball.  Meagan did really well actually because she was kind subdued, so she let her work with her.  There were a few seconds where Meagan would keep her head a few centimeters off the ball if Miss Susan (the PT) held her arms, so that was exciting.  She did a few more trunk exercises and some rolling exercises and then she let Meagan rest because she was obviously so out of it. 

Overall, it's been a "good" week of appointments and therapy.  I feel like Meagan is being well taken care of and I'm glad we seem to have her core team of doctors in place.  Now we wait until next week when her glasses should be in - I can't wait to post pics of her in them.  A sweet baby in cute pink glasses - who couldn't love that!? :)

Tuesday, April 17, 2012

Through Meagan's Eyes

Meagan had her follow up today with her Pediatric Eye Surgeon.  He thought her eyes still seemed to be seeing things - but they wander a LOT still.  He said babies after 6 months of age shouldn't have such a problem, so he wants to put Meagan in glasses.  He said she may need surgery to correct her eyes and give them the best chance at good vision - but first he will try glasses.  He said that he wants to try this first because if it works, it means one less surgery.  He said he will know in 1 month if the glasses are working... if they don't, off to eye surgery she will go.

He also wants her wearing a patch - for one hour per day.  We switch eyes everyday... so hopefully this along with the glasses really helps her pull her eyes forward and strengthens them.  Today, when the doctor expressed concern over her keeping the glasses on, the positive thing I thought of was... well, Meagan doens't GRAB yet very well - so maybe the glasses will stay on well and do their job! So, that was a "good" spin to put on everything... and then I thought... "maybe it's a good thing she's not grabbing yet"....

Lastly, as we were waiting in the front for Meagan to be fitted she was getting fussy, so I had picked her up, and propped her facing forward in a sitting position.  I had my left arm close to her body and she comfortably slumped her head over to the left side, over my arm, and rested there.  She stopped fussing.  So I left her like that.  Then I realized there was a big TV and she was staring at the light. 

A woman walked by and looked over at Meagan - she said "Your baby is sideways".... I looked up and said "Excuse me?" ... It was such an odd comment.  Then I realized she was looking down at Meagan....she continued on .."Your baby is sideways - she's falling.  See, her head is falling over to the left..."

The firey Aries in me wanted to snap back "She can't hold her head up yet".... but... I counted a few seconds and realized, the poor woman was probably saying something completely innocently ... and I didn't want to make her feel awful if that was the case.... so giving her the benefit of the doubt, I just smiled and said "Oh, thank you."

I did chuckle on the inside.  I guess this was my first "wake up call" that Meagan is looking older now.  She's still like a newborn to me in her body language...so snuggly....so things like the lady saw don't even cross my mind.  With her sitting on my lap, out of her carseat, it's more apparent she's an older baby, but that she cannot hold herself up, so I guess that will get more "looks" as time goes forward. The confrontational side of me thought maybe I should print out Meagan's medical sheet and just hand it out like a business card... answer nosy questions and spread Hydrocephalus awareness at the same time.  But... after one look into Meagan's calm, reassuring eyes.... then I thought... well, maybe I'll continue to be more charitable, take a breath, smile like I did today.... and let Meagan do all the talking. 

Tuesday, April 10, 2012

Gonna Be a Long Night

And just as smiley as she was yesterday... she's been like this tonight.  It's probably her head hurting her... the small seizures she's had all night ....or even something as "normal" as teeth... but it's so hard to tell with her since she has so much going on.  But I don't like seeing her uncomfortable, that's for sure.

Sunday, April 8, 2012

Light of Christ

As we were approaching Meagan's first Easter, something really struck me as we entered Holy Week.... I remember reading:

"There would be no Easter without Good Friday" ...

How true is this statement. Images from "Passion of the Christ" come to mind.... our Lord suffering immensely, being horrendously tortured, and diying a painful death.....yet it was all for a reason.  And probably a reason bigger than we will ever fully comprehend in this world.  All that suffering was so Easter Sunday could happen - so He could live again and give us all the promising gift of new life.

The "Good Friday" statement rang true to me this year more than ever.  While Meagan has had a good streak here recently, and while I am grateful for that, I have also seen her on horrible days. Pictures of those days swirl through my head...and aprehension for the "next bad time" always brings me worry.  But despite the hand Meagan has been dealt, God has shown me this Easter that it is all for a reason as well.  Without her struggles, we wouldn't appreciate her triumphs appropriately.  Through Meagan's suffering, she is also offered new life. 

This Easter, I am filled with joy and gratitude.  What a gift for Christ to give himself for us .... and what a gift Meagan is to our family..... for she is closer to Jesus than anyone I know on this Earth.  She is so pure....she has Christ's light within her daily.

Happy 1st Easter Meagan.  May Christ continue to give you new life and many blessings as you continue to grow.  And may his light shine through you and teach us all what true joy in suffering really is.

Love you.