Tangled

Our house has been taken over by Rapunzel and all things “Tangled” lately!  The girls and I went to see the newest Disney movie last fall and pre-ordered the DVD so it would arrive soon after its release at the end of March.  It is such a cute movie and I love the soundtrack so much I don't even mind playing it for the girls in the car! 

This blog post has been about a month in the works because in listening to one of the songs from the Tangled soundtrack I can't stop thinking about my life in the past year.  April 15^th was an emotional day for me because it was a year ago that day that we had our ultrasound and found out that Sophie had health problems.  Yet, I look at her now and she is thriving...such a joy in our lives!  And we've made it a year...a long year...and life is better than we ever imagined it would be.  When I listen to the song “See The Light” some of the words capture exactly how I felt and now feel about my littlest girl.  I spent so much of the past year feeling “tangled” and just not knowing how to process everything that was going on.  Some days felt like madness and I struggled to find God and His plan in it all.  Sophie is 9 months old now and I realized that I do “see the light” after going through a period of darkness.  We live such a normal life with her that sometimes I forget what we went through in the beginning and that she could still face issues in the future.  But, there is a constant peace that reminds me she is meant to be with us and that whatever we may face in the future she will be fine and we will be fine.   I am so in love with this sweet little girl and it's hard to believe that she will turn ONE in less than three months!

Here is a link to the video and the lyrics to “See the Light”.  While the words are intended for a love story between a boy and a girl, I think you will see how they remind me of  Sophie and our journey so far.  God has blessed us so much by placing her in our lives.  She is truly a shining star!

http://www.youtube.com/watch?v=ut1_0cRRYeE&feature=related

SEE THE LIGHT (from the Tangled soundtrack)

All those years watching from the windows

All those years outside looking in

All that time never even knowing

Just how blind I've been

Now I'm here, blinking in the starlight

Now I'm here, suddenly I see

Standing here, it's crystal clear

I'm where I'm meant to be....

CHORUS

And at last I see the light

And it's like the fog has lifted

And at last I see the light

And it's like the sky is new

And it's warm and real and bright

And the world has somehow shifted

All at once everything looks different

Now that I see you.

All those days chasing down a daydream

All those years living in a blur

All that time never truly seeing

Things the way they were.

Now she's here shining in the starlight

Now she's here, suddenly I know

If she's here it's crystal clear

I'm where I'm meant to go....

It's Just Information

FINALLY...I have a chance to update.  Life has been busy and the kids have all been sick.  Since the beginning of March, Sophie has had RSV and two ear infections, the other two had strep back to back.  I am off FB for Lent so that gives me much more free time.  You know, as much as I can get with three kids!

Kayla turned SIX a couple weeks ago and had her first real sleepover with three friends.  It is hard to believe how big she is.  She is doing great in kindergarten and is starting to read really well too.  She can read Hop on Pop to us and is so proud.  She still prefers writing and drawing to reading, which pains me b/c I am such an avid reader, but she is also really good at drawing.  I think she struggles with her place in the family lately, wanting to be a big girl, but also wishing she could be one of the little girls too.  We got her a DS for her birthday so Mike is looking forward to introducing her to the wonderful world of video games. :)

Madelyn loves preschool and has acquired Kayla's Leapster lately and loves to play the Tinkerbell game.  She can now write her name as well as most letters in the alphabet.  This kid is too smart for just being 3 1/2.  She amazes me more each day.  She is your typical preschooler who melts down about things sometimes, but she is also very independent and entertains herself so well.  She loves detailed things like puzzles.  She tries so hard to keep up with Kayla, but also loves playing with Sophie.

Sophie is doing amazing!  She is still seizure free and we've weaned her off one of her seizure medicines completely with no problems.  She is still on the other two, as well as a heart med, and recently had to start on Zantac since we've determined she was having silent reflux.  She was refusing to take her bottle off and on for weeks as well as having a chronic red throat, but no strep.  Three days on Zantac and she was back to her normal self.  We're hoping she can wean off of that at about 9 months.  I could use less medicine in her life!!!  Even with the RSV and ear infections she is such a trooper.  She's been a happy baby through it all.  Ever since weaning off of the one seizure medicine we have seen her personality just explode.  She laughs so much, babbles, reaches for everything, fusses when we put her down...all the normal things that 7 month olds do!  She is sitting well now and hardly falls over anymore.  She still has some weakness in her left hand and arm, but we are continuing to work with a physical therapist through Early Intervention who comes once a month to our house.  She gives me things to work on with her to help her stay on track milestone wise.  So far she seems completely on track except for the left arm being a little behind.  But for a baby who had brain surgery 4 months ago she wows everyone with how on track she is!  Her new favorite thing to do is EAT.  She struggled in the beginning with baby food, but after a couple weeks she got the hang of it and now eats more than I remember the other two eating at this age!  She is a lot of fun and I enjoy her more and more each day.  It's hard to believe she'll be 8 months old on Monday.

So I have some news about me.  No, I'm not pregnant...we are DONE DONE DONE.  Did I say DONE?  Anyway, back in December I had blood drawn for genetic testing.  I did mine and Mike was going to get around to doing his sometime after.  Well, my test results came back questionable for Tuberous Sclerosis, so Sophie's neurologist advised that I have an MRI on my brain and a kidney ultrasound to look for tubers which would indicate that I carry the gene change that would make a clinical diagnosis.  I had them done and while my kidney ultrasound came back fine, my MRI showed three tubers on my brain.  Now, don't worry!  This really doesn't make a difference for me since obviously I'm fine and living a normal, healthy life.  What it means is that we now know that Sophie got this from me, and I could've got it from my mom or dad, it could've been passed down for generations or it could've started with me, who knows.  I won't have to have any further testing unless I start having neurological issues, which since I haven't so far no one expects me too.  What's interesting is that I had mild seizures as a child that I was medicated for and eventually went off the medicine and they never happened again.  So this could be the explanation, or maybe not.  So Mike no longer has to get tested since my results came back this way, but we do eventually have to get Kayla and Madelyn blood tested just so they'll know their status for the future.  If you have TSC there is a 50% chance you can pass it on to a child so they need to be aware.  And since they are healthy and developmentally normal, if one of them had it they would just have to have a kidney ultrasound every 5 years or so to look for tuber growth, but if they didn't have any by their 20s they would be clear of them...like I am. 

It's been a whirlwind of information which I thought would devastate me.  Really, it's been the biggest weight off my chest.  I no longer have to think, "what if I have this" b/c I do and if we hadn't had Sophie I wouldn't even know.  Having Kayla and Madelyn tested makes me nervous, but I'm glad that they will know their status with it and will never have to go through what we've just gone through with Sophie unprepared.  The best part of these results is that the feeling of resentment that I've had toward Sophie since her birth, with all the stress she's brought into my life, is GONE.  I feel like that sounds horrible that I've resented my baby b/c at the same time I love her so much, but it's been the hardest thing I've ever gone through and couldn't help but thinking "if only we hadn't had a 3rd" or "what would life be like if we'd had a baby without problems" but now that I know that she got this from me it's like I know it's not her "fault" not that it ever really was.  I feel like this doesn't make sense, but it's how I've felt.  Mike and I are secure in the fact that this information is just that...information.  It really doesn't change anything.  Sophie has TSC, I carry the gene for it but am not affected and we just move on from here.  If anything it gives me living proof that you can have this condition and live a completely normal life!  I'm living proof!!

Hope everyone is doing well.  We are blessed to be in a place of peace with everything in our lives.  God continues to lead us down our path together and we trust in His plan for us.  We couldn't have made it through the past year without all of you.  Our family and friends are the biggest blessing in our lives!

Knocking on Wood

It's been awhile since I've updated and life has been great!  Sophie is growing and changing every day.  She is just over 5 months old now and such a blessing in our lives.  She makes all kinds of noises, laughs (especially at Kayla), grabs for toys, and has started to roll over from her tummy to back.  She's even napping better most days which is so nice for me!  I feel like we have a good routine going that will only get better with time.  She has been seizure-free since her surgery in October.  Our Christmas season was extra special this year since life was finally calm and we got to spend a lot of time together as a family of five.  Kayla and Madelyn adore Sophie and fight over who gets to play with her.  They are both so sweet with her in their own ways.

Sophie's physical therapy is going well.  We've met with her therapist twice now and she's guided us with ways to improve Sophie's head control...which is now right on track.  We're working with her now to encourage rolling from tummy to back which she's getting the hang of this week.  She had been rolling back to tummy before her surgery and still does every once in awhile.  My girls have never been big rollers though!  And of course we continue to encourage her to use her left hand which was somewhat weakened by the surgery.  The therapist also noticed that she was keeping her left hand clenched in a fist, more like a newborn, and called it high muscle tone so we now have ways to stimulate her hand to open more and she's keeping it relaxed more each day.  We hope that she'll have made enough progress with it that she won't have to be fitted for a hand splint, but even if she does we'll deal with it and do what's best for her!  She's also started sitting in the Bumbo seat and loves looking around at what's going on. 

I have struggled off and on with not letting all this get to me.  Sometimes I get in a funk where I feel like this physical therapy is all on me and that if she doesn't achieve a goal it is my fault.  I know it's not in my control and that we as a family are in this together and will do the best we can to help her progress.  She's so on track milestone-wise that we feel very blessed, especially with all the reading on Tuberous Sclerosis we did when she was born.  And really, she doesn't get that much physical therapy.  It's a once a month meeting where we get tips and goals to work on for the coming month.  The one thing that I keep working on is living day to day.  I do the best I can each day with all three of my girls and when the day is over, I box it up, put it away and look to the next day.  God is in control here and He has led us this far and will continue to lead us each day no matter what comes.  He has brought us such joy and calm over the past several months and we are so thankful. 

So yesterday I had an unexpected conversation with the nurse from Sophie's neurologist's office.  She called because I have recently had blood drawn to send off for genetic testing (Mike will do this too) to rule out if one of us might have TS and just never have manifested any of the symptoms or problems.  By the way, most TS cases are a spontaneous mutation, but it has happened that one of the parents of a child with TS has it too and just doesn't know.  We get tested and if we are fine, then there is no reason to get Kayla or Madelyn tested, especially since they are so healthy and developmentally normal.  Anyway, so the nurse calls just to get the date of my blood draw and then asks me how Sophie is doing.  I tell her that she's doing great, we haven't seen any seizures and it's been wonderful living this calm life with her, not having to call the doctor all the time.  She responds hesitantly, "Well knock on wood...seriously, find some wood and knock on it."  I was taken aback.  No one has ever responded that way to me and it surprised me because this nurse has an adult child with TS.  Every person that has ever asked me about Sophie and how she's doing is thrilled and hopeful that she's doing so well.  I tried to brush it off, but it really stuck with me all day yesterday.  I kept thinking, "Am I naive for basking in the goodness of life right now?  Does this nurse know something I don't?  Should I be worried?"  I prayed about it last night and after talking to Mike, my mom, and my best friend I feel a lot better today.  I have come to the conclusion that what the nurse said was inappropriate.  I have faith and hope that the future holds amazing things for Sophie and that each day is a gift.  I refuse to KNOCK ON WOOD!!!!!  I will continue to pray daily for Sophie and her progress and thank God for each blessing we receive.  It's amazing how one person's negative comment can ruin your whole day.  And make you doubt yourself.  I would much rather have God on my side than a piece of wood. :)

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of it's own. " -Matthew 6:34

Life continues to be good.  We are coming up on half a year with our sweet Sophie at the end of the month.  I enjoy each and every day with my wonderful husband and three beautiful girls.  God continues to show us so much through Sophie and through every step of our lives. 

Life is Good

It's been over three weeks now since Sophie's surgery and life is good.  She hasn't had any seizures and we are thrilled.  She will remain on all of her medications for six months so that her brain can heal.  By not adjusting any of them for her weight gain in the coming months she will very slowly wean off of them some.  Then in late May the neurologist plans to start weaning off of them more and see what happens.  It is so nice just living life normally.  Sophie is back to eating and sleeping well.  She has slept through the night for the past three days!  Her day sleep is still hit or miss.  Last week she took great naps, but yesterday she cat-napped all day.  She's so tired at the end of the day when she cat naps!  But, that's just normal baby stuff so we can deal with it. :)  She has started rolling over some and grabbing for toys while laying on her playmat.  Her left side is still a little weaker than the right, but she seems to be gaining more strength each day.  We see lots of smiles, coos and Kayla even got her to laugh yesterday.

I have started the process to get her assessed by the Early Intervention program in our county.  Her pediatrician would like her to start physical therapy for the weakness on her left side (since the surgery) and also her neck muscles seem to need some help since she still doesn't pick up her head much when she's on her stomach.  She moves it back and forth and is starting to look like she's trying to pick it up, but I feel like she could use a little help in that area.  The therapists will come out and do the assessment this week and then set up a plan for physical therapy.  The best part is that it will be done at our house so we won't have to drive anywhere for it. 

Kayla and Madelyn are loving school and doing well.  Kayla got her first report card and did AWESOME!  We are so proud of her, especially with the past three months being so stressful for our family.  She blew away her PALS testing which is the phonics assessment they do three times a year.  The benchmark for kindergarten in the fall is 28 points and she scored 71!  The benchmark for the end of the kindergarten year is 82 points so she is way ahead.  Again, we are so proud.  Madelyn is learning letters in preschool and loves playing with her friends.  Her favorite things to do at home are coloring and puzzles.

Mike and I finally feel like we've settled into a routine with our three girls.  It's a crazy life, but wonderful!  Thank you for all your prayers and support.  It feels good to have life feel THIS GOOD!

Home Again

We are home again.  It's been a week since Sophie's surgery and so far we've seen no seizures.  This has been the ultimate goal so we're hoping it lasts!  She's still on all the same medication and will be for several months before they try to wean her off of some or all of them.  I'll find out more about that at her neurologist follow up on Tuesday.  She's recovering well...still a little off with eating and sleeping, but improving each day.  The most frustrating thing she's doing is that her naps rarely last longer than 45 minutes (on the dot!) but as a mom of three I know that this frustration is a normal baby thing and has nothing to do with all the medical struggles we've been through!  While Kayla and Madelyn were better nappers at this age, they both went through phases of this at other ages.  I am trying to get Sophie on a more regular routine with eating and sleeping, but with her it seems a little harder since we are on the go more and she just isn't as consistent with things.  She is still recovering though and I have to remember that.  Overall, she is pretty much back to her usual self and is such a sweet, calm baby.  It's hard to believe she is already 3 months old and at the same time it seems like we've been doing all this for so much longer!

Kayla was back in school this week and we had some extra time with just her since Madelyn has been with Mike's parents all week.  We decided to leave her there for awhile longer so we could ease ourselves into life back at home while Sophie is recovering.  It's been so quiet around here without her!  She'll be back today and our whole family will be at home once again.  We're hoping that the coming months will be much calmer than the past three months now that the surgery is behind us.  There are still no guarantees regarding seizures, but we are hopeful.  God has led us this far on our path with Sophie and we have full confidence that He will continue to show us the way.  It may not be the path we would like, but it is His perfect plan for her and us that we must trust.  I have struggled with this all along, but remain steadfast in my faith.  It hasn't been easy, but it certainly would be harder without relying on Him to hold us up during difficult times. 

I am doing better.  The anxiety medicine has helped a lot and the changes we've made to our daily routine around the house has made life much easier for all of us.  I look forward to being at home long-term without the looming of a stay at Children's in the future.  With the holidays approaching we are very thankful for so many blessings in our lives, especially all the family and friends that have been praying for us and supporting us.  We can't thank you all enough.

 ‎"...being strengthened with all power according to His glorious might so that you may have great endurance and patience..." -Colossians 1:11

Surgery Update

Sophie is out of surgery and resting comfortably in the PICU until tomorrow.  The surgery went well and the surgeon was able to remove the tuber that seemed to be causing the seizures and some surrounding tissue.  Once it was removed they didn't see any more abnormal activity in that area.  We are hopeful that she won't be having seizures as a result, but that will take time to find out.  They have her on two additional seizure medications for the next several days just to make sure things in her brain are calm while she's healing.  We were able to see her and she was moving around and pretty fussy.  They are giving her Tylenol for pain and will also give her a small amount of Morphine if it seems necessary.  Tomorrow she will have a ct scan to make sure there isn't any hemorraging or any other issues and if all looks good she'll be moved from the PICU to a regular room.  The surgeon thinks that she could be discharged as early as Monday, but we'll see.

I've been strangely calm today.  I kept telling Mike how I just didn't feel anything...nervous, scared, emotional...nothing.  He said that's what it's like to be calm and I agreed that he was right.  We had full confidence in her doctors, especially her neurosurgeon who we have the utmost respect for.  He has been an amazing resource and support during this difficult process.  We spent some time with her and are now back at Mike's parents house to rest.  It's been a long day getting up at 4am and a lot of waiting.  I'll call for updates tonight and we'll go back tomorrow morning to spend the day with her.  She needs her rest and so do we.  I'm still trying to get over this cold I have.  Hopefully I'll be feeling better tomorrow.

Thank you for your prayers and ongoing support.  God continues to guide us through this time and we are so grateful for the people He has put in our lives to love and support our family.

Sophie's Surgery

We have scheduled the date for Sophie's brain surgery.  It will be on Friday, October 22nd.  It is overwhelming that this is happening so quickly, but we know it is best for her.  We are so hopeful that it will be life-changing for Sophie and for our family.  The ultimate goal is that she will be seizure-free, but it would even be good if she had to stay on seizure medication that controlled them completely.  The outcome remains to be seen and since there are six tubers on her brain and they are only removing the largest one that the seizures seem to be coming from, there are no guarantees for the future.  But, it's the best thing we can do for her right now.  Kayla and Madelyn will be spending a long weekend with their cousins in PA and then Kayla will come home to go back to school while my mom stays at our house to get her on and off the bus and take care of her.  Madelyn will continue to stay with Mike's parents until we come home with Sophie.  I am working on seeing if Mike and I can stay at the Ronald McDonald House near Children's so we don't have to drive in and out of DC each day.  There have been many offers of a place to stay for us, but I am going to try looking into this first as we want to be near Sophie, but have a place to get away from the hospital when we feel the need to. 

Sophie is doing well, despite her seizures.  She is almost 11 weeks old, weighs over 12 lbs and has started sleeping through the night most nights!  That has been a blessing even though I have to give her medicine around 4:30am...she sleeps through it and I go back to sleep.  I have been having a hard time with anxiety lately though and it's been hard on all of us.  I think it's been building over the past weeks, but for some reason scheduling her surgery pushed it over the edge.  I spent the weekend in pretty bad shape, but have also started on anxiety medication that should kick in in the next couple weeks.  Mike and I have talked about some ways we can change our daily routine, especially in the evenings, and I think it will help things a lot.  I've also asked our next door neighbor's daughter to start picking Kayla up at the bus stop which has alleviated some stress for me since sometimes Sophie is sleeping or Madelyn is grumpy after getting up from her nap.  It's hard for me to ask for help, but I'm getting better at it.  I have to remember that yes, I can do all these things I'm asking help with, but it will make this season of life easier if I let those who want to help do so.  Thank you to everyone who is doing so much to make our lives easier. 

Please keep us in your prayers in the days leading up to Sophie's surgery.  Madelyn has been acting out more lately which I think is in part due to her sensing my anxiety.  Kayla seems not as affected, I think because she is at school most of the day.  It's hard knowing that my mood and feelings are affecting my children, but given the situation I have had to accept it and move on making the best choices we can for them.

In my devotional over the weekend I came upon this Scripture which made no sense to me at the time, actually frustrated me reading it that day.  Today it makes so much sense as I've seen this anxiety bring me to my knees feeling weak, but forcing me to find strength in the things I can control in my life!

"...for when I am weak, then I am strong." -2 Corinthians 12:10