October 26, 2013

So little, yet so big

  I had to take this picture while Sadie was asleep as she never holds still for me.  The outfit on the left was the outfit that I had picked out for her to come home from the hospital.  Size: newborn. However, she was swimming in newborn.  So while I was at the hospital with Sadie my mom went shopping and found a preemie outfit for her.  The outfit on the right.  The PJ's she has on in the pic is a 12 mo size.  And they fit her perfect.
  Was she ever that small?  Apparently, she was 2 yrs ago.  It seems like just yesterday and at the same time it seems so long ago and hard to remember.  Sometimes I feel like she is not growing at all, as she still seems so small to me.  But my baby is growing and she is just a few days away from being 2 yrs old.

October 24, 2013

Then and Now

   A year ago I started this post.  I never finished it.  It was about the days leading up to Sadie's birthday.

   As I said in a previous post, I procrastinated a lot when it came to Sadie's birthday party.  I was excited, sad, happy, anxious, stressed.  I had no idea why all these crazy feelings were coming up.  Everyone was calling "what can I do to help with the party" and  "what does she need". Ya know, the typical question you ask people when a party is coming up.  At first I was excited and I wanted a huge party.  After all, she deserved it.  A million Dr appts, surgery, therapies, a bazillion car rides, blood draws, MRI, X-rays, EKG's, echos of the heart, EEG, hospital stays, NG tube inserted a million times in her nose.  You name it, she probably had it done.  So why was I getting so stressed out? And crying? And procrastinating?  I actually thought about cancelling her party.  But why?
   I should be thrilled and excited that we made it to a year.  She hasn't been sick (except a week ago with bronchitis), she doesn't have seizures or respiratory issues like she is "supposed" to have.  We have her nutrition under control.  She is delayed but she tries so hard and she is sloooooowly getting there.  So one night after my girls and husband went to bed, I sat and thought and thought and thought and cried and cried and cried.  WHAT is my problem?  Slowly it started to come to me.  Even though I accept her for who she is and am so proud of how far she has come, especially since I was told she wouldn't do anything, and I love her to pieces, I still grieve that little girl I dreamt about. I don't think I have really let myself think about it or grieve it because I have been so busy with her medical stuff and making sure that I wasn't missing anything.
  *This post is so hard to write because I'm afraid this is all going to come out wrong because it is complicated, but I'm trying to explain the best I can.*
  With her birthday coming up I started to think back to a year ago and her actual birth and the days after that in the NICU.  As happy as I was that she was here, there was so much anxiety and unknown during that time that unfortunately it overshadowed the fact that I was so lucky and happy that she was born alive and I could actually hold her in my arms.  I started feeling all those feelings again.  It was horrible.  I started to get angry and feelings like this isn't fair.  It's not fair that she can't hear us sing happy birthday to her.  It's not fair that she can't open her presents.  It's not fair that she can't dig into her cake and make a huge mess.  It's not fair that she can't be more excited about the boxes then she is about the actual gift.  It's not fair that she can't toddle around or crawl or show off her new skills that she learned over the past year.  THIS IS JUST NOT FAIR!!!
  So after I got done having a pity party for myself and thinking about everything that she can't do, I decided I had to change my attitude for everyone involved: for Chloe and Aubrie, Sadie, my husband, and myself.  Sadie deserves way better then this.  The girls were super excited that she was turning one and plus they love birthday parties.  I didn't want to put a damper on their excitement.  My husband just doesn't get it.  He thinks way differently when it comes to certain things and this is one of them.  So for the sake of our relationship I had to drop it and we just had to agree to disagree. Sadie, well, she is just a happy baby and deserves to have happy people around her.  Having relatives and friends around her that adore and love her, will make her happy.  Me, I'm still human.  I still feel sad when I think of different things that won't happen, but when I feel myself going in that direction I just have to change my thought process and realize how far she has come, and what she can do and what a blessing she is to our family.

  So that was all written a year ago.  Guess what?  All those same feelings came back again this year.  Not so much about her party, but the feelings of anger.  How I couldn't enjoy her birth, how her infant and baby years have been stolen away from me, and how things are not fair and that children (anybody for that matter) should not have to go through everything that she is going through on a daily basis.  It makes me so angry that she has to fight so hard to do things that are supposed to come so naturally.  Why did she get dealt this hand of cards?  To teach the rest of us something?  I would have been glad to learn these lessons some other way.  This is where my faith has to come in.  This was God's plan.  And His plan is always better then ours.  I may not understand his plan and I may never understand his plan completely, but it is His plan.  On certain days I somehow need to adjust myself to see his plan.  I have to remember the miracle that she is and get past all this anger.  I really hope that these feelings don't come around every year, cause honestly it pisses me off (pardon my language) that they hang over me like a dark cloud during her birthday month.

October 22, 2013

2nd Birthday Party

Happy 2nd Birthday Sadie!!

Sadie had a wonderful birthday party. She was a very happy little girl all day.

This is one of my favorite looks from her.  She cocks her head to the side and looks up at you with those beautiful eyes that are always smiling.
Sometimes I wonder if Sadie is just accidentally doing things or if she does things more on purpose.  In these next few pics you'll see Sadie with a balloon.  It was accidentally dropped her as the girls were playing with it.  Sadie got so excited .  She kicked her legs up and kicked it and moved her arms around and moved it.  The whole time with a smile on her face and a giggle here and there.  I truly believe she knew exactly what she was doing.


Family Pic!  Sadie was waving to the camera.

Sweet sister picture.
Picture with her little cousins.
And a pic with her big cousins (minus 1)
All the kids took turns opening at least one present for her.  They thought it was pretty cool to get to come to a birthday party and open presents (even if they weren't for them).  They all love helping her.
New winter hat and boots.  Too cute!!

Sadie got a lot of clothes. 

Sadie didn't care about opening her present,
 she was just glad to have a foot rest.  LOL

Aubrie was so proud of herself that she picked out a book that Sadie could touch and feel.
"It will help with her therapy to touch things and I will teach her the sign for the animal."
She is one smart little 4 yr old.

Chloe insisted on buying clothes for her.  This doesn't surprise me as she is my little fashion diva.  "I have to find her something that is not pink!  She has way too many pink clothes."  (She has a point. Look in her closet, and all you see is pink, pink, pink!  It does get old.)

Sadie had a little help blowing out her candle.

She was fascinated with the fire. 
Over all it was a great day.  Sadie loved all the action going on!
God Bless this beautiful 2 yr old!  How lucky we are to have her here with us.

October 20, 2013

Eye Ulcer Update 2

   Went back to the eye Dr again this past Thursday to check on the ulcer that is on Sadie's eyeball.  The good news is that it is 98% gone.  The ulcer is literally the size of the end of a pin.  We are down to just treating it 4 times a day instead of 7. The bad news is that she has a scar on her eye as a reminder. It makes me so mad!  I seriously want to scream.  I tried so hard to prevent these dang ulcers.  The saying "no good deed goes unpunished" keeps popping into my head.  Not sure yet exactly what this scar means for the future of her vision.  Hopefully it means nothing, but it's another "just wait and see".

October 19, 2013

I see you

   Over the summer there was a couple of weeks that I just was not in the greatest of places mentally.  Life with my husband was not going the best (nothing major, just regular marital issues).  I felt terrible because the girls wanted to do certain things or I would have liked to do certain things with them but couldn't for one reason or another (such as going to the beach).  I always feel guilty cause I don't feel like I spend enough time doing therapy things with Sadie.  I could go on and on about all the stuff that was bringing me down during those weeks, but I won't.  Those moments, days, weeks, even months sometimes, really suck.  But they eventually pass (thank goodness).  They pass because I have people in my life that help bring me out of those funks.  During this particular couple of weeks an old friend of mine that I only talk to once in a blue moon just happened to contact to me (because she had "a feeling").  She immediately knew that something just wasn't right.  We chatted about life and at the end of the conversation I felt so much better.  I'm so thankful for the friends and family that I have.  A few weeks later I received an email from her that had this post from another blog attached to it.  As I was flattered that she thought of me, I could not help but think of all the wonderful special needs parents out there that I have been lucky to meet or that I have observed from a far.  So I thought I would pass this on to make sure that you all know that "I see you" and that you are all incredible people.

Having a child with a disability can be difficult. There are moments you wonder if anyone will ever understand or get what it is like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.
But you are not. Today, I want to tell you that I see you.
I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.
I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.
I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.
I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.
I see you walking into the school for the third time this school year. A binder full of notes, lists, and goals. Your don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.
I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.
I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.
I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.
I see you at social gatherings where well meaning people ask ignorant questions about your child or her disability, they make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.
I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.
These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.

This was written by Ellen Stumbo and taken from her blog

October 07, 2013

Another ultrasound done

   Back in July I explained that Sadie has to have ultrasounds and blood work done every 3 months to check for tumors.  She is going to be prone for tumors (cancerous tumors) because of her hemihypertrophy,  That ultrasound showed that she did not have any tumors, but she had kidney stones.  When looking back at all her ultrasounds that have been performed since birth she has always had these kidney stones.  No one seemed to be to concerned.  They said that since she was born with them, they shouldn't be an issue.
   Fast forward 3 months.  Last week we went for another ultrasound.  The Dr just called me with the results.  She said to her surprise the kidney stones are gone, but now there is a cyst in her spleen.  She said that "at this point it is simply a small, generic cyst and it is not worrisome.  We will do another ultrasound in 3 mo to assess the current cyst and check for anything new".  Great! One more thing to worry about even though she told me not to worry about it.
   The Dr also went on to have a very short, brief conversation with me.  Something that she just wants me to think about.  One that I really wasn't expecting at all and it kind of threw me a little bit.  The Dr stated that she had spoken to Sadie genetics Dr in regards to all these ultrasounds and blood work and chances of cancer and a bazillion other subjects.  She said that she is really trying to get a handle on what is truly going on with Sadie and put her best interest first.  Her genetics Dr had no answers for her.  Surprise!  As we all know, we don't have very many answers about Sadie and we are hoping to get answers from this exome testing.  The Dr (her pediatrician) said that she just wants me to think about what avenue we want to take with this little girls life.  She realizes that it may depend on what the exome testing results show and she doesn't expect us to come up with an answer right now and she realizes that this answer may change as things with Sadie change, but she just wants to make sure that it is in the back of our mind.
  Why is she bringing this up? Well, in this specific conversation it was because she wants to know if we want to continue with the US/blood work every 3 mo.  If we are to continue and we do end up finding a cancerous tumor.  What will we do with it?  Do we treat it? Or do we leave it alone because this little girl has a lot going on.  She was also referring to all the other specialists.  Is seeing all these Dr's helping this little girls quality of life?  Are their interventions or their ideas worth our time?  Are we going to follow through with their plan because it will help her quality of life?  All questions that I have asked myself at different points in Sadie's life, however, this conversation still caught me off guard.  It's different when it is said out loud and by a Dr.

First trip to Chuck E Cheese

   After my husband and I got a grip on everything that was truly going on with Sadie after she was born we made a vow to her that we would treat her just like our other two girls.  We will give her the same experiences and opportunities.  Yes, we will need to adapt some things but we will not treat her like she is broken, because she is not broken.  Someone asked me once "why it was so important to you" (FYI I wanted to punch this person).  My reply "because she is human, can experience happiness, she deserves to be treated equally, and there is no reason not to include her in everything (unless it would be detrimental to her health)".  Now, I'm also not na├»ve.  I understand that things that may be fun and happy for us, may mean absolutely nothing to her.  However, she has two typically developing sisters that know what fun and happiness mean to them.  What makes them happy, they assume will make Sadie happy and they always want Sadie to be happy.  It's important to us to keep things as normal for them as we can, so we go along with just about anything those, two crazy sisters come up with.  To them, Sadie is no different then any of their friends little sisters.  They know that she has some differences, but they don't understand the depth of these differences.
   Today, we went to Chuck E Cheese.  The girls were so excited because Sadie has never been there.  They kept pointing out different games and rides to her.  Sadie could care less but it was important to Chloe and Aubrie to show them to her.  She was more excited to look at all the bright, colorful, flashing lights.  The girls wanted Sadie to ride on the rides with them.  Sadie really wasn't into that either, she went along with it once and then told us no on the rest of the attempts.
   Sadie's enjoyment came in watching the lights.  But to the girls, Sadie's enjoyment came in going to Chuck E Cheese for the first time and seeing all the games and rides.  This is one of the many things I love about my girls.  They treat Sadie no differently then they treat each other.  They are wiser then most people out there.  Yet, another lesson learned from Sadie.  :)  We are so lucky to have her in our family to be able to teach important life skills in non verbal lessons.

The one ride Sadie rode on.

Aubrie will never smile with her teeth showing.  She makes me laugh.  It so matches her personality.

Love this toothless grin!

October 05, 2013

Chloe lost her first tooth

   This was one fun thing that happened to Chloe this summer.  She was soooo excited.  You would have thought it was Christmas morning.  I can't lie, her excitement spilled over onto me.  I was just as excited for her.  How could you not be excited though when you see a smile like this?

So excited to use her new tooth fairy pillow!

October 04, 2013

Eye Ulcer update

   Good News!  The ulcer on her eyeball is improving.  It is still there and probably will be for awhile.  But it is becoming less irritating to her.  It still has a cloudy spot and a slight divit in the ball itself.  But the white of her eye is no longer extremely bloodshot.  It is still pink around the iris, but the outskirts are turning white and she is opening it more and wider.  The eye Dr said we only have to come see him once this next coming week.  WooHoo!!  Still have to do eye drops/ointment every 2 hours for 14 hours out of the day, but we are making progress.  I'm not complaining.  It's worth it! 

October 02, 2013

An eye ulcer? Really?

   Last Monday morning Sadie woke up with a little bit of a red eye and a little bit of goopiness.  This is not anything new for her.  Because she has corneal anesthesia (also known as neurotrophic keratopathy) her eyes do not produce enough tears to keep them moist and she tends to poke them and not realize it because she can't feel them.  That morning I started her normal eye drop routine and didn't think much of it.  A little later I noticed that it was getting a little more swollen so I thought maybe I should do extra drops.  I did this, but this time she rolled her eyes back in her head so I couldn't see her iris and pupil and they were extremely blood shot.  This was odd because she never rolls them back when I give her eye drops and they are never this red a couple hours after her first treatment.  I watched that eye over the next couple of hours and soon she completely closed it and wouldn't look out of it. OK, something was really wrong with it, I thought.  I opened her eye with my fingers and she rolled it back again.  I kept it open this time and finally she rolled it back and looked at me.  Sure enough, you could actually see an injury to her eyeball itself.  A cloudy spot right to the left of her pupil. She poked it bad this time.  I called her eye Dr and asked if I should do the usual eye regimen and the aid stated that he wanted to see her that afternoon.
   I made arrangements for someone to get Chloe off the bus and then Aubrie, Sadie and I left to go to the eye Dr.  I stopped and got Aubrie a snack because I knew it was going to be a very long visit.  Why? Because 1. her eye Dr always takes a long time and 2. Sadie was being worked into the schedule.  I was right.  3 hours we were there!  But I can't complain.  He truly cares about her and her eyes.  First we saw his partner that works in the same office.  He did his whole exam and told me what he thought.  Then he left the room for a few minutes and came back with Sadie's real Dr that she always sees.  The first Dr stated that he didn't like what he saw and wanted her own Dr to see it since he is very familiar with Sadie.
   The Dr looked at it and said he didn't like what he saw either.  They stated it was not a poke to her eye.  It was a neurotrophic ulcer.  What?!  How could she get this big of an ulcer this fast?  When she went to bed last night her eyes were perfect.  12 hours later and we have an ulcer on her eyeball.  Grrrr!  I work hard to keep these eyeballs safe. We do eye drops/gel and ointment 3 times a day or more depending on how they look.  Everybody, including her sisters, are always on the look out for her sticking her fingers in her eyes.  We do not want anything happening to her vision.  I asked if ulcers could just happen that fast and with no warning and he stated "yes".  I was so bummed.
   The Dr stated that he is treating it aggressively to begin with to make sure it doesn't get worse.  So this is the plan: 1. we are alternating between an antibiotic eye drop and an antibiotic eye ointment every 2 hours. 2. we are patching her eye at night and anytime during the day that she is not in our eye sight. 3. we are seeing the good Dr every 2 days until we have a good handle on this ulcer.  Talk about exhausting.  You wouldn't think so and the task itself is not hard, but constantly watching the clock is terrible.  Every 2 hours for her eyes, every 3 hours for her food.  I live by the clock now.  Anybody that really knows me, knows I hate the clock!  I am late for everything.  I plan nothing.  I go with the flow and am the most unstructured person ever.  Now, I have had to change a little bit because of my girls, but for the most part I still don't "believe" in clocks.  This is killing me to have to watch a clock all day, but ANYTHING for my baby.  Maybe this is one of those lessens that Sadie is trying to teach me in a round about way.  Lol  My mom would love if I changed this "bad habit" (as she calls it. I call it relaxed).
   A week and a half later we are still doing the same regimen.  But it is getting better.  Her eye is a little less swollen, she is actually using it now, and it is now more white and pink then it is red, and the spot is becoming less visible to the naked eye.  We go back to the Dr again on Friday and lets hope and pray that he agrees that it is improving so that maybe we can adjust the drops/ointment a little further apart and stop seeing him every two days (which honestly wouldn't be that bad except its 30 mins away, one way. I know, it's still not that bad, but this often... it's a pain in the butt).

Cheap Therapy

   I'm back!  I'm so excited and thankful.  I'm so excited because we finally gave up on fixing our old computer and sucked it up and bought a new one.  Now I have to take the time to figure out all this new computer jazz.  It is so different.  I feel like an idiot trying to figure it out.  I need to go to some sort of basic computer class. Lol Or I bet if I asked my 6 yr old she would probably be able to tell me everything and more.  The kids these days are smart little cookies when it comes to electronic things.  I know I sound like an old person, but it's true.  I show them one little thing, and they can figure out the rest.  Crazy!!
   I'm thankful because I am able to write again.  I never realized how therapeutic blogging has been for me. I always thought I was writing for others.  Come to find out it's really been for me this whole time.  Don't get me wrong I love that I have gotten emails and comments from people I know and people that I don't know that have stated that they can relate or to say thank you for sharing our story.  I love that I have been helping others.  That was my goal when I decided to become an extremely amateur writer.  But people ask me all the time "are you taking care of yourself", "what are you doing to help yourself"? Now I can legitimately say that I am doing something for myself and it is helping me.  Love it!
   I have so much to write about that I don't even know where to begin, but I will do my best to catch up on all the crazy stories that have been going on in the past couple of months.  *SIGH* It's so good to be back.  Thank you to all of you for not giving up this blog.  Now, to move on to the next post to catch you up on Sadie.