"Weight"-ing around

Meagan had a weight follow up today.  She is holding steady at 14 lbs. at 10 months old.  It is still in the 1% for her age, but that is just Meagan.  I love her Pediatrician.  She is very careful to follow Meagan closely, however, she doesn't panic from numbers on a page.  She said yes, Meagan is tiny for her age...however, she is not unhealthy.  She is not "undernourished."  The Pediatrician also said that this may be "just Meagan"... slow and steady.  She did say she wants Meagan to go ahead and have the swallow test now, because she is still gagging/spitting up milk at times, and also has regressed in her solid food attempts.  The few times she has licked food off the spoon or taken a little from a feeder since the day I posted about her eating a few weeks back, she has gagged and even spit up milk she already ate at an earlier time.  (I shouldn't have jinxed it by posting about her eating! Oops!) We will need to work with a Speech Therapist to help her get onto some sort of solids, if possible, but before we do so, we need to know if we are dealing with a developmental issue, or an actual physical problem.  They were very good at working her in and so she will go for her swallow study on August 3rd. It will be very helpful to see if Meagan actually has swallowing issues so we can move forward in the best way possible with food and eating. 


In other news, Meagan did get some new gear! The first necessary item was a Nap Nanny.  Meagan doens't tolerate sleeping on her back, so she has slept in her bouncy chair from the day she came home, October 26th, until 2 nights ago at almost 10 months old.  Although she's small for her age, she really did outgrow the bouncy chair and we needed a new sleeping arrangement.  We tried the crib again, and to no avail.  We knew about the Nap Nanny and it's softness and inclined position. I had mentioned it to my sister in law when she was visiting.  The day she left, a package shows up at my door.... it was a Nap Nanny! (Thank you Aunt Katie and Uncle Mike - Meagan's Godfather).  So for the last two nights, Meagan has napped and slept all night in complete comfort in her new digs... and she loves it!

The second item was a high chair.  Even though she is not eating foods yet, she loves being around people.  Having 4 older sisters, who are constantly eating, we are often in the kitchen.  Whether it's fixing snacks, meals, cleaning, or putting away dishes, we spend a LOT of our day in the kitchen, so we don't want her to miss out on these social times!  We had a spacesaver chair we could strap on to any chair that worked fine for our other kids.  It would have worked fine with Meagan too, except that in our size family, we need almost all our chairs.  We decided it would work better to have an actual high chair so we weren't constantly moving her seat on and off when we needed to eat dinner together.  Nanny took Meagan to the store and she picked out a great high chair. (Thank you Nanny!!)   We got it set up last night, and she seems pretty happy in it!! So now when we have family times in the kitchen, instead of being on the floor in her bouncy chair, she can be up high with the rest of us, looking around, and enjoying a new view!

So now Meagan has some cool new gear to enjoy her days hanging out with her sisters.  She already seems to love her Nap Nanny and her new view from her high chair, so we are very happy about that! Hopefully the swallow study will give us some clues as to why she is struggling so much with food so we can have a productive follow up with her GI doctor.  While we "weight" around for those results, we will continue to enjoy watching Meagan look around from her new view at the table..... and as far my view goes, I could never tire of looking down at her and seeing this snuggle bug right up next to me where she belongs:

No Words

The most amazing things are shown to us through the eyes of children.  Witnessing interactions between children remind us of the joy in life, and the innocence of childhood.  Meagan's little cousin, Claire (6 months old), is visiting this week.  Meagan was laying in her bouncy seat, when Claire crawled over to her.  What happened next was the sweetest thing I've seen in a long time.  Kids are amazing.  Watching them communicate is so special. There are no words.



Neurosurgery Follow Up - Fall Surgery

Today Meagan had her Neurosurgery follow up with Dr. R.  She had a CT scan first to look at brain development and also do a 3D reconstruction of her skull.  She has been severely overlapped for some time now.  As you know from before, her shunt has been changed several times to try and avoid this, butwe just never found the perfect setting for her.  Even half a setting higher, and she would poof fluid from between her skull bones, her soft spot would bulge and she would be miserable. We have had her set on a flow that was a bit fast, but seemed to work for her.  She was happy, eating, sleeping, and her fluid was draining well allowing for good brain growth.  Unfortunately, the "side effect" of not finding the perfect setting was having hers suture overlap, increasing the risk of premature fusion of the bones.  It also made her NSG monitor her closely to make sure that the faster flow didn't leave her with slit ventricles.

After her CT this morning, we met with Dr. R. at his office.  He explained everything to us.  As far as brain growth, tissue is still "fluffing out," slowly, but still fluffing....which is a good thing.  However he did notice her ventricles looked a bit small for his comfort level. Of course we want her ventricles to shrink from where they were, but,  this was a drastic change in a very short amount of time. Just from June 28th to July 11th, her vents took a sudden dive and had a significant decrease in fluid. Dr. R was not comfortable leaving her shunt flow where it was due to this sudden decrease.  He said we would try turning up her shunt pressure again and see if we could put a little more fluid in the ventricles to help them stay at a healthy level.   After he adjusted her shunt setting, we talked a little bit about the structure of the brain.  There is still a lot of crowding at her craniocervical junction (back of her brain) as we discussed before.  We are still going to watch that for now. 

Finally we talked about Meagan's head configuration and her overlapping sutures.  Unfortunately, Meagan's coronal and sagittal sutures have fused, and the metopic suture is also completely fused.  Dr. R said that  surgery is necessary due to her secondary synostosis. (Read about the surgery here: http://www.pedisurg.com/pteduc/craniosynostosis.htm)   The scan even showed where her shunt catheter is now pushed across the midline, and we don't want the pressure of the fused skull to have any chance of moving or dislodging it.  Dr. R said there was no need to rush into surgery next week, but he suggested because of Meagan's potential brain growth, and the fact that more than one area is already fused, we move sooner than later to prevent any stalling of progress.  He also said since she will need it done, he prefers we do it younger than letting her get older because the bones will be softer to work with now, and there will be less blood vessel involvement under the skull bones the younger she is.  This was no "surprise" for us but I wasn't 100% her bones had actually fused.  After her CT today, of course I was sure.    Dr. R is VERY conservative when recommending anything invasive for Meagan, though, and because she is doing well, has always preferred a wait and see approach to other issues she has had.  Another Neurosurgeon could have easily operated on her a few times now, and he has avoided that. So for him to explain the pros and cons of doing the synostosis surgery now versus later, and have him conclude we not wait, made me know it is a worthy recommondation.  We trust him 100% with Meagan's care, and so surgery will be scheduled for this Fall. 

We are going to meet with the pediatric craniofacial plastic surgeon this month to talk about Meagan's case and make a plan, and then see Dr. R again in August to finalize surgery plans.  There is no "final date" as of yet, but it will probably be in September.

In the meantime, we will see how she tolerates this new shunt setting, and make plans to get care ready for our other kids while Meagan is in the hospital this Fall.  It is a little scary thinking about the surgery coming up and how involved it is, but, it is also scary to think about her brain growth being restricted by her skull fusing too small. If her shunt position, or brain growth were not at all in question or being affected by her skull, we would leave it be and decide to decline surgery. After going over all the details today, we know this surgery will give her brain more opportunity at continuing to "fluff out" and keep her shunt catheter from being pushed on.  We want Meagan to have the best life she can possibly have, and and moving forward with this, while not the 'ideal' situation, is the best thing we can do in this situation to help her reach her full potential. 

Meagan waiting to see Dr. R with Daddy

Happy Birthday!

Today is Meagan's very first 4th of July.  We celebrate the Birthday of our great nation and remember the vision put forth by our founding fathers.  As I was thinking about the main principles in our Declaration of Independence, life, liberty, and the pursuit of happiness, I began to see how they also intertwined with what I hope for Meagan's future, and for all of my girls.


Life:
To live it to the fullest.  To enjoy it.  To glorify God with their daily actions. To be thankful for the gift of life we have all been given, and to defend life as they become productive members of society.

 

Liberty:
To use it wisely.  To use it responsibly.  To enjoy the freedoms we are so blessed with in this nation.  To use their freedom to do good, but also use it to freely walk away from bad choices.  To never take their freedom for granted.

Pursuit of Happiness:
To be content.  To find a meaningful vocation. To continually educate themselves in their faith.  To realize the short time we have here, and enjoy being sisters together. To pursue their dreams and use it for good.

So Happy Birthday America!!  Thank you to those who have fought and continue to fight for it.  And thank you God for our blessings in this great country, and especially for my wonderful family! 

Happy 4th of July to all!

She's Back!

Ever since Meagan's seizure Wednesday night, she hasn't been herself.  Besides her right side being limp, she also rarely smiled and was extremely quiet.  She slept a lot more and even when looking around, seemed more out of it.  Friday, she seemed more alert, but then in the afternoon, she had two more seizures laying in her crib, and was back to being sleepy.

We left on Saturday morning to go visit Brian's parents in Florida.  She was content the whole trip and didn't even wake to eat (which is not like her)! I did notice, though, that she started to wiggle the fingers and toes on her right side, when she would occasionally stir,  so I figured feeling and movement would soon come back. Our first day at the in laws, I did notice her trying to move her right arm for the first time, but it would just go straight up, and then flop down again. She was still very sleepy and very floppy.  When she was held, she still mostly hung there on her right side.

Chillin with Grandma

Fast forward to this morning, Monday the 2nd.  She woke up smiling, has been cooing louder than a siren, and has been finally kicking her right leg up and down!!  She has moved and bent her right arm, and reached down to grab her left foot.  She is also responding now when I place her favorite toy, her O-ball, in her lap.  She is grabbing it and feeling it with her fingers. She is back to looking around the room, and smacking her lips.  I cannot believe it took from Wednesday night to Monday morning for her to return to 'herself.'  She must have really been knocked out. 

So happy to wake up today, to a beautiful morning in sunny Florida, and see Meagan looking right at me like she normally does.  Dudley even went over to her and gave her a big ol' lick across her face  (eww!).  Welcome back baby! So good to see your happy little self again!

She's Baaaack!!

BOO!

Meagan has been free of seizures for about a month and a half now.  It's been a blessing because I've really seen her blossom, smile more, and progress.  Wednesday night, she had a seizure for the first time in a while.  Afterwards, I noticed her right side seemed almost completely unresponsive and limp.  Normally that's her stronger arm, but if I picked it up it just fell down.  I also noticed the right side of her face wasn't moving as much either.  She fell asleep.  After she woke up, she seemed to be feeling better.  I talked to her and rubbed her hand - she looked at me and smiled a little but only with the left side of her face.  The right side was still very relaxed, as was her right arm. I was glad to see her smiling, but she really seemed knocked out soon after.  She fell asleep again for a much longer time, and when she awoke again, it seemed she had more movement back in her right side.  It was the first time she's reacted like this to a seizure so I double checked with her Pediatrician.  She suggested I call the Neuro to see what they said. 

The Neuro called back ASAP and told us that it was probably temporary paralysis from her seizure, but, considering Meagan has spiked a small bleed before, to watch it.  If it wasn't better later on, take her in and check it out to be sure.  The day went on and she still wasn't "herself."  Yes, she would slightly smile at me, but anyone who knows Meagan knows she is VERY smiley - ALL the time. No cooing either, and she is normally very loud.   She also was more subdued, and slept a lot.  She still wasn't using the right side of her body either over 24 hours later, so the Neuro called again to check and upon hearing how she'd been acting, said to come in and get it checked out.  Normally, we would have waited another day, but, it was about to be the weekend, AND we were leaving to go visit family out of town.  I'd rather her see doctors she trusts than someone new in a strange city. 

We took her in and her right side was examined.  The doctor said it did seem like paralysis but they wanted to check the cause.  She had a small issue show up in January on the left side of her brain on her scan - this are of the brain controls the right side of her body, so we needed to double check it wasn't impacting the seizures.  The results luckily showed everything looked ok and there were no bleeds - so the doctor told us he was confident it was most likely still the paralysis from the seizure.  He said normally it will clear up in 4 hours to 24 hours....but he would allow 4 days to see any improvement.   Her med dose was also increased to ward off anymore seizures. 

Today Meagan has been content, but still not back to her full self.  She is moving her toes and some fingers, but still not flailing her arm like she normally does, and still not bending or grabbing with it. She did have another seizure in her crib this evening when I was playing with her, but, I don't see any increase in the paralysis, so hopefully it is still improving.  She only had her first increased dose of meds last night, so we will wait and see how she does over the weekend. 

I can tell this is frustrating for her because the spectrum of her mobility right now is movement of her arms! She loves to hit her diaper, bat at toys, and grasp her hands together.  I actually saw her today looking over towards her right side, as if she was saying "Hello! Please work!"  She ended up at one point reaching over with her left hand, and grabbing her right arm trying to move it.    It was pretty incredible to watch - her willpower is so strong!  I'm trusting that in the next few days we see continued improvement.  I'll be watching her closely...we'll see if the new med dose kicks in to keep any more seizures away.  Hopefully we have no issues while we are visiting with the grandparents.

Meggy, you are so sweet! BOO seizures!!!

No Matter What.....

 
This weekend, I got to experience a wonderful thing. The 2012 Hydrocephalus Family Meet-Up happened this year in Nashville, TN, and we were lucky enough to be able to attend. It was incredible. There is simply no other way to describe it.  Seeing a lot of people face to face that I have been communicating with online this past year. Meeting other Hydro kids. Seeing my girls run and play carefree with other siblings.  Just enjoying great company, great conversation, and wonderful wonderful people for an entire day.  99% of the time, the talk was not about Hydrocephalus...  But it was just that feeling that the person you were talking to"knew."  Everyone there already had the "understanding" of what being a Hydro parent is.... so we could all freely enjoy the day with no explanations, no definitions, and no judging.

Meagan enjoyed her weekend

This weekend also marked about a year from the week of Meagan's initial diagnosis.  In the weeks following her diagnosis this time last year, I was scouring the internet for information, blogs, message boards....anything where a "real" person was on the other side... with "real life" Hydro experience. Not wanting to take the doctor's "doom and gloom" outlook for my daughter, I yearned for other people actually living with children like Meagan.  Here I am, one year later, and I was actually with these real people for an entire weekend.  Talking with them, hugging them, learning about their lives.  There were families there from Washington state, through the mid-western states, from Texas to the East Coast.  There were Hydro kids there of all ages and all abilities.  There were families there with no siblings, and some with several.  The best part of the whole weekend, though, was that none of that mattered.  We were all just people.  Just people there, with kids we love. Amazing, beautiful, wonderful kids, with amazing, beautiful, wonderful parents.


God always lets us know we are not alone.  And this weekend, I saw that first hand.  I always say Meagan's life was a gift to us.  While that is infinitely true, I see that through her, we were also given the amazing gift of our Hydro family.  And I say family in the truest sense of the word.   No matter what, we are never alone.

Loaded Question

The questions I get most often are ... "How could you handle all that with your other kids? How could you handle a "child like Meagan?"

My only answer to them is..... How could I not?

Neurology Follow Up

Meagan had her follow up today with her Neurologist.  Dr. F was happy to see her.  He went over Meagan's records, scans, and gave her a quick physical exam.  He told us the following:

1. Meagan seems to be progressing well in her own time.  She still has quite a bit of work on her head control, but he was happy to see her stronger.  He said she is low tone, which is so confusing to me because Meagan seems to have almost spastic movements at times, so I don't know how they assign the tone quality.  I think I'm going to ask her PT again tomorrow to explain it better to me because it surely is confusing! He was insistent that she start OT and Speech therapies at this point.  He said if Babies Can't Wait cannot fit her in within the next month, he wants us to call and they will write a perscription so we can submit it to our private insurance.

2. He was very happy we have seen no seizures recently.  He is happy with her dose of Keppra - and she didn't gain that much weight. (She is only 14 pounds at 9 mos old).  So he said there is no need to increase the dose at this time.  He said when she reaches around 18 pounds, or if we see seizures again, whichever happens first, to call and they will up her dose. I was concerned about some stomach tensing Meagan has been doing lately, but it hasn't progressed into anything else more serious, so we are just going to still watch that.   Dr. F wants her to have another EEG sometime this Fall to keep an eye on her brain wave activity and see if anything else is going on.  He said we can schedule that at her next appointment, unless we see seizures pop up again, or have more concerns about her stomach spasms.

3. Dr. F went over Meagan's latest scans with us.  He said that overall, the brain growth looks good.  Her ventricles look smaller and he said, of course, that is a great sign the shunt is working properly.  He did say the shape of her ventricles looks rather strange, but he won't be able to tell if that has any implications until we give her brain more time.  He also said he does notice some, in his words, "funky things" in the front of Meagan's brain.  He said it is difficult for him to elaborate on any malformations at this time, and again, wants to do an MRI later this year to get a better look and see what kind of malformations are really present.

4. Head circumference - Meagan's head measured 41cm today.  It has measured 44cm, and then 43cm.  One would think a shrinking head is a good thing, but, actually it is not necessarily the case.  Of course we want the fluid leaving Meagan's brain and kept out from putting pressure on her brain tissue... BUT.... we also want her to have "normal" head growth, for her.  A normal child's head grows "x" amount of cm per month.... we would want Meagan's to grow as well, even though it starts larger than a normal size head.  The fact that it has not only stayed the same, but, gotten smaller, probably means her sutures are overlapping even more and possibly have started to fuse.  It also means there is not enough brain growth to push the bones outward and keep them from touching.  While she has had good brain growth, it has not been enough to keep those sutures from overlapping.  This is something Dr. F said we will go over with Dr. R at her next Neurosurgery appointment.  She is due for a 3D reconstruction scan then anyway, so being he is the surgeon, he will be the best one to talk to us about what course of action, if any, is needed to restructure her skull so it does not impede more brain growth in the future.



So, in short, the good things were:
- weight gain
- no seizures
- brain growth
- smiling, cooing, eating, sleeping progress
- gaining strength in her neck
- smaller ventricles

The things we watch are:
- old seizures recurring, or new seizure types
- weight gain (for new med doses)
- physical progress with therapies
- ventricle shape and size
- possible malformations at the front of her brain
- crowding of her posterior fossa
- synostosis of her sutures


All in all it was a great appointment.  We got a lot of information, and Dr. F, once again, took the time to go over everything we asked.  We are excited to see him again in 3 months and hopefully show him how well Meagan is still doing.  She certainly gave him her share of smiles today! :)

80 days of trying

I will never say again I know what it's like to try hard at something, and succeed.  While technically I have done this, I've also had full advantage of my health while doing so.  And most of the time, things I have had to work hard for have been "extras" in my life; being a more competitive Irish dancer, being a more accomplished flute player, being a stronger woman by taking care of my physical health and challenging myself. ... and the list goes on.  But I've never really had to try to accomplish what most consider an "everyday task" with so much intensity as Meagan has had to try to do the smallest things.

My other kids all started eating foods at different ages - none of them are the same... and they were all very different babies as well. Some ate earlier, some waited until finger foods.... some walked early, some went to PT for walking....but, they basically followed the "normal" schedule of things when it came to what babies do. 

As everyone knows, Meagan has been nursing great, which is such a blessing. And finally this past March, we were able to train her to take some breast milk or formula from a bottle.  But as time went on, and she started to grow more, she became more demanding with her need for food.  We thought about trying food at the 4, 5, or 6 month mark, but, truth be told, she just wasn't ready.  She still had a very strong tongue reflex, and didn't seem to know what to do with the food once it was in her mouth. I didn't mind her increased nursing, or needing to buy more formula for supplementation, but I wanted to give Meagan a chance to eat and see if she could adapt to some food.

Not liking food. At. All.

 I decided in April what I would do, is rather than "give up" or wait until some "magic date," I would just keep trying with her, a little bit everyday.  Letting her lick the spoon, feel the sensation of it in her mouth, try drops of different food on her tongue, and spit it all out again.  I wanted to let her process it in her own time, and figured, one day, she was bound to figure out how to swallow a little of it. 

Tonight, she was starting to fuss - her typical time she was hungry.  I got some sweet potatoes out of the fridge and decided to try again with her as I do everyday.  I let her feel the spoon and the food in her mouth....and then the funniest thing happened.  No food came back out! I gave her another little taste, and this time she spit it out. But I put it back in, and waited.  No food! She had swallowed it! I was so happy! I grabbed my camera and fed her a few more bites.  She did pretty well! In the end, she ate about 1/2 ounce of food! 

Good job Megs!

So, at 9 months old, after 80 days of trying, Meagan has enjoyed her first meal of 1/2 ounce of sweet potatoes.  She seemed very proud of herself.  And if you ask me, she should be! Everyday is a struggle to live her best life... and she just proved to herself the famous mantra "If at first you don't succeed, try, try again!" Good job Meggy! Mommy is so proud of you!

Meagan eating for the first time!

(And yes, that is the Heat/Thunder game in the background.  Being that Brian's family is from Cleveland, we are hoping LeBron loses. :) )