It's been WAY too long!

Wow! I thought I'd have more time in the summer to update this blog and turns out, I don't! Life is just busy. Things have definitely changed since the last time I blogged.

JUDY- Well, she's really been amazing!!! We LOVE her!!! Not sure exactly what happened but she's a gem!  She still has some sensory issues, and doesn't sleep that well BUT she's not as crabby anymore!!!! She's been getting Speech and Occupational therapy from First Steps.  We believe this has helped her a lot! It's been so wonderful for our family to have JOYFUL JUDY around daily!!! :)

JACKSON- Jackson starts growth hormone injections next week.  Luckily, we were able to get him in on a clinical trial for a new drug, that will be free to us for 9 months.  After that, we will have to start paying.  After much investigation, the drug will be around $1000/month.  CRAZY! He will need to take this injection daily until he's finished with puberty.  :(  He Jackson doesn't take this, he will likely end up being around 5' 2".  With the drug, he should be 5'7" or taller.  Bless his little heart.  He keeps saying, "I sure this fixes my small problems.".

MY DAD- Dad has still been really ill.  He has no energy and terrible headaches daily.  However, 2 weeks ago he went to his cancer doctor.  They ran blood work AND he is CANCER FREE! Amazing! Now he still has the blood disease, but the cancer is gone! Everyone was shocked! Including his doctor! His doc says this rarely happens, especially this quickly!  So grateful for my dad, yet, he still needs a lot of prayer.  It's very difficult for him to work.

The rest of us are great! I've had some extremely challenging issues with my work, but starting at a new school next month, as a 5th grade teacher.  I'm really excited for this new chapter and ready to move forward.  Also, Michael and I celebrated our 12th wedding anniversary last month! CRAZY! Time really flies.  Gracie will be a 6th grader! How crazy is that?!?

Anyways, thanks for all your thoughts and prayers over this past year.  I probably won't be posting as often due to my new job and Judy being so much better! This blog was such a wonderful way for me to vent, get support, etc. So thank you for reading. I will try to keep you updated on Jackson's journey.

It's been awhile...

Sorry I've been MIA! Life just hasn't slowed down any in the past few weeks.  So, where do I begin?

1st - JUDY: She's actually been doing pretty good these past few days! Starting to talk and babble a little more. She's still biting a lot.  She's bit someone everyday at day care for the past week and a half! YIKES! Last week, I saw the little girl's arm that she bit AND I WAS MORTIFIED! It was terrible! Bleeding and Jude took a HUGE bite out of her arm! I could have died! So, I'm sure this has to do with sensory issues and her lack of communication.  Occupational Therapy starts next week, speech therapy started a couple weeks ago, and still waiting on the neurologist to see her.  We don't know what else to do at this point, except LOVE her, guide her, and take care of her.  Judy is just so feisty, rough, and needy- neither one of our other kids were ever like this.

2nd- JACKSON: Bless his lil' heart! He has the growth hormone deficiency.  Thankfully, he is getting screened to be part of a new growth hormone drug clinical trial! Which will be free to us for 9 months! After that, it will be around 2K/month for his growth hormone injections, and will need to take these once/day until he is done with puberty.  CRAZY!! But I'd do anything for that lil' guy!! He has my heart! This week he will be performing at his school's talent show doing STAND UP COMEDY! Hilarious!!! Jackson is something else!!!  I know 9 months seems far away, but please pray we figure out how to do this financially for him.

3rd- GRACE: Can't forget about our sweet 11 year old!!  She is the kindest, most loving person!! She's becoming such a beautiful young lady.  Starting to talk about boys, shaving her legs, got her ears pierced, etc!! YIKES! Am I really that old to have a daughter that old?!?!?! Crazy! She's also such a great help with Judy!! The past couple nights she has asked to put Judy to bed! :) It's too sweet! Grace takes Judy upstairs and rocks her for 15 minutes or so, and Judy falls right asleep! Precious sisters! Love it!

AND you can always continue to pray for Michael and me.  Our lives have been so crazy the past year.  We are trying so hard to keep it all together!! It just seems like one thing after another!  Michael has had some health issues, and I'm on a temporary contract, hoping to have a job next school year.  When it rains, it pours. We did get to get away last weekend. My parents watched the kids, we went to the Indy 500, and then to a very nice hotel downtown for the night.  It was super relaxing and very nice to get away and spend time together.  We are coming up on 12 years of marriage this June. Now that's crazy! Praying for no more craziness, praying for peace.  Thanks again for all the support! :)

He's Got It!

Poor little Jackson! Results came in, he has the Growth Hormone deficiency! :( Our poor lil' buddy.  Now we just wait on the paperwork to get to our insurance.  We are extremely scared of the amount of $ this is going to cost us! They do have a clinical trial going on, that Jackson could be a part of, and it would be free.  However, this would call for a lot more doctor's visits, blood work drawn weekly, etc.  And they don't even know if this new drug works yet.  So, who knows what we will do.  We are very bummed out about this whole situation.  We just want to make the right decision! Typically, this hormone injections costs around $70/day! It's crazy!

Judy has been very Up and Down lately.  Crabby most of the time, unless with new people or a change of scenery!  Michael and I are exhausted! We both are extremely eager for work to start Monday mornings, and dread the evenings and weekends! I know that sounds bad, but she's so exhausting! She takes all our energy.  Judy just won't do one thing independently, she's always on top of us whining, and won't sit still for one minute. We LOVE her! We really do, but the fussiness might just put us over the edge!!!

Thank goodness, Michael and I get a break!! We are going to the Indy 500 in a couple of weeks! We can't wait!!! Michael rented a hotel, downtown Indy, that night too!! I'm grateful to have this to look forward to! It's what's keeping me going.

Also, I'm a Title 1 teacher, which is a temporary teaching position in Wayne Township.  Still haven't found out yet, if I get to come back next school year.  Remember, this job has literally saved my life!  It's what I look forward to!  I've made so many great friends, LOVE the position, and heart the students!  I pray that I get to stay!!! I will FREAK out if I have to be a Stay-at-Home mom with Crabby Judy next year!! AHHHH!!! NOOO!!!

Please pray that we make the right choices for Jackson's health issues, that Judy will be joyful, and that I can stay in my teaching position at my school!!

Waiting... and Staying Busy

Jackson's Growth Hormone test went really well last week.  Jackson did a super job! He was very brave!! I just held his sweet face next to mine, when the nurse put the IV in his arm.  I could feel tears fall on my face from his eyes! My heart just ached. 

My good friends (Missy Joy and Kara Mabus) gave me great advice.  Missy came up with the idea that every 1/2 hour I could give Jack a small gift to open.  Jackson LOVED that!  And Mabus gave me a great idea to prepare Jackson for this day.  She said I could act really excited that we were going to the hospital because we will get to find out if they can help him with growing taller.  It worked!  He really wasn't too nervous. Thanks girls!!!! :)

Jackson just has the best personality! He is such a ham!! He's a character! The nurses loved him and so do we! It was a 4 hour test and we are still waiting for the results.  Big Bummer though because if he does have this deficiency, it's going to cost a lot of money!! Without insurance, it's around $70K/year! YIKES!!!  Insurance is really funny, for some reason, about this growth hormone drug.  Even if insurance covers some, it will still be a lot for us monthly.  I will do whatever it takes for that kid though! I will keep you posted.

Judy, on the other hand, is UP AND DOWN.  We just can't keep up with her moods.  We had a lot to do this weekend, so that helped pass the time and entertain Judy.  She likes to keep busy.  We ended this weekend with my niece's birthday party! Sweet Georgia peach is now 1!  Oh how I love her!! We got to see a lot of family too! Big shout out to my cousin AUSTIN! (He really wanted to make the blog!!) LOL! 

Whine...Wine

Been one of those days.  Poor Michael.  I had to work all day at school getting an assignment done.  I left at 7:30am and got back at 5:30pm, and still don't have it finished.  Needless to say, I'm exhausted.  All day I prayed that Judy would be joyful for Michael.  I guess she was some of the time, but the majority of the day she's been whiny and fussy.  When I came home, Judy was crying.  I tried to chat with my other kids about their day, but had a hard time doing that because...she was crying.  Tried to give her a bath, and she cried.  Gave her dinner, she ate a little bit, then back to crying.  Just tried to rock her to sleep, and she whined and cried.  Crabby Judy is in bed now, crying, still.  I might try to rock her again in a few more minutes.  Until then, I will have a glass of wine.

The weather explains it all!

Our days have been just like the weather these days, cold one day and hot the next.  It's so frustrating to not know what tomorrow will be like.  I guess I should be thankful we get some good days!

Today was a good day, and I really needed that.  Joyful Judy was so much fun to be around this evening.  Every time she gives us kisses, she opens her mouth really wide. This evening, she was trying to make a smack with her kiss.  It was so sweet!  I loved every minute of it!  When I lay my head down tonight to go to bed though, I can't help but wonder who she will be tomorrow, Crabby Judy or Joyful Judy.  Just thinking about it can make me so anxious!  I wish I just didn't have to worry about it,  I wish she was happy all the time (or at least the majority of the time).  Judy sets the tone in our house. I know that sounds crazy but she does! And there's nothing I can do about it.  I just want to fix it. 

Still waiting on the neurologist from Riley to call, so that we can make an appointment.  First Steps therapy starts this month too.  The Riley doctor wanted to get an EEG (I think that's what it's called) on Judy- this would see if she's having any type of seizures, brain issues, etc.  I asked what all it entailed- and I was like, NO WAY! It just wouldn't be worth it, unless the neurologist really thought we should do it.  So, I will wait to see what the neuro says.  It really doesn't sound that bad, but knowing Judy, it would be a nightmare.  We would have to go there in the morning, they would put all these cords on her head with a bunch of sticky glue, and then try to get her to take a nap (for at least an hour).  OK, Judy doesn't really take naps, and when she does, it would have to be in her element and in her own routine. Also, the sticky glue they put on is so sticky that it doesn't come out for 2 weeks after the test.  Judy would lose it if someone touches her head, let alone put wires and glue on her head.  She would be a HOT MESS!  I know she would never fall asleep, especially with all that stuff on her head.  I have no idea how they get little babies to do this test.  Judy would freak and I think that would just send me over the edge. AHHHH!

We've found that Judy loves the warm weather! So, this evening, I'm praying for warm weather.  I'm tired of the rain and cold!! My family, my life has had enough rainy days.  We need the sun.  "When it rains, it pours"...that's exactly how the past few months have been for our family.  Praying for a sunny day tomorrow!  I think we've had all we can take.  And my sweet Jack! He has his growth hormone deficiency test May 1st.  Please pray this is painless and that our sweet Jackson doesn't think too much about it. 

Thanks again for all your support and prayers! 

Doing OKAY

Well, we are doing okay.  Just really tired.  Last time I wrote, I put her back on the Valium for a few days because CRABBY Judy was back.  I wanted to try it again to see if it would work like last time (Valium for 3 days then stop).  You won't believe this, but it worked! Really odd!! I spoke with the Riley doctor and she is baffled by it as well.  She is going to speak with some of her colleagues to see if they might know why this Valium helps sometimes.  This past week she has been a gem! Until this morning, someone woke up on the wrong side of the bed. Just really fussy, crying, not content, won't stay focused and/or entertained for more than 2 minutes, wants to be held, etc.  To make things worse, we somehow locked our entire family out of the house tonight, didn't even have car keys, and it was torrential raining.  Thank goodness MiMi saved the day! She drove all the way from Lebanon to bring us our spare key!! :)

Bummer of a day.  I was really hoping Joyful Judy would've lasted a little longer this run.  I guess if she's crabby again tomorrow, I might start the Valium again for a few days then stop, and see if it works again!??! My poor kids! Grace and Jackson had their parent/teacher conferences this evening at school.  Crabby Judy stole the attention from them.  We brought most of their work home, so that we can spend some time looking at it with them.  They are both doing great, by the way!! Super proud of them!! Grace is such a sweet, young lady and is extremely passionate about learning. Jackson is the funniest guy we know and has an amazing imagination.  We couldn't be prouder. And Judy...we really love her too!! We do! Good thing she's cute as a button! ;)  Just need to get her figured out.

Pray tomorrow Judy wakes up on the right side of the bed, that Michael and I will have energy, for my dad's health, and for Jackson's procedure.  Jack's growth hormone deficiency test takes place on May 1st.  I'm nervous! I love that lil' boy!

Once again, thanks for all the emails, texts, messages, etc.  This blog has helped me sooo much! Knowing we have so many people behind us and praying for us is such a blessing!
NIGHT! I'm beat.

Confused...

Quick update... So, last I wrote, I put Judy back on the Valium.  I gave it to her for 3 days. Ever since I stopped, she's been acting fine again.  It's so bizarre! It confuses me. I'm wondering what the Valuim does for her that is helping. The last time I gave her the Valuim, it didn't help her while she was on it. The day after I stopped giving it to her she started acting happy and normal. So that's why last week I thought I'd try it for a couple days again and then stop it to see if it stops her fussiness again. It worked! I told the Riley doctor and she was surprised. She said she was going to check with some of her colleagues to see if they have a hunch why the Valuim could be helping in this way.  She also is making sure we see a neurologist soon at Riley. Which is good because, my father in law (retired psychiatrist), thinks she might have Temperal Lobe Epilepsy. I have no idea, I just want answers and a solution!
Last week when I spoke with the Riley doctor, she brought up that miracle drug again. The first time we met with her she said she would give kids that have the same issues that Judy's having a mood stabilizer. But she said she wouldn't give it to someone under 2 yrs old. Well, last week when I spoke to her, she brought this drug up again, Risperidone. It's an anti-psychotic. It would be very scary to give to Judy because she's so young. There's been no research studies on children 2 and younger taking this drug. They just don't know the types of effects, etc. it could have on toddlers. But she said every time she sees Judy and/or whenever I tell her Judy stories, all she can think about is this drug. The doc brought it up this time because she just wants me to start thinking about it, researching it, and getting feedback from others on it. This drug would have to be our last resort. I just don't want to hurt her! I just want to get her feeling better and happy! I'm just so confused.
Judy just qualified for First Steps so that should be starting soon. Continue to pray. We are tired and need answers.

Results are in...

Seriously, we just can't get cut a break.  So, many of you know that my father had a brain tumor and bran surgery last November.  Surgery went well, however my dad still felt very ill with severe headaches.  Last week he went to the hospital with the worst headache of his life.  They found that his bone marrow is making too many red blood cells. They diagnosed him with Polycythemia Vera.  My dad will have to get a liter of blood drawn each week for the rest of his life, due to him making too much blood.  We could deal with this news... but, more news came from the bone marrow biopsy.  Bad news...

Dad has cancer.  It's a type of bone marrow cancer, related to this Polycythemia Vera.  It's a very rare cancer. First thing the doctor said to him was, " We have bad news.  The longest you can live with this is up to 10 years." My poor dad. I feel so bad because my mom has been in Florida for Spring Break and no one was there with my dad for the news.  That's really all my dad heard from the doctor, along with the word CANCER. None of us were prepared for this. This also has nothing to do with his brain tumor.  We are really hurting.  Not sure what else to say. Dad starts chemo this week.

Why me?! Why him??! So many whys! Why has my life turned upside down over the past 2 years?!?! Why?! I'm angry, annoyed, bitter, tired, and feel helpless.Why did I get mugged in my alley, why did I have kidney stones, why did Judy cry for 1 whole year?!?!?  I want to help all these people in my life and I can't!! My poor Jackson with his height issues, Judy with her issues, and now my dad. Please pray for our family. I'm not sure we can take much more.

Crabby Judy's Back!

That's all that needs to be said.  She's back!!! It's been an awful 2 days.  I broke down today.  Gave her the Valium again.  I had to, or I was going to lose it! Lets see if it works.  Pray she sleeps.  I can't believe this is happening again.  No more energy to write. Just needed your prayers.

Ali, You are Right!!!!

OK, I just have to post this. I'm shocked by the response I've received since starting this blog.  Everyone tells me how honest I'm being.  So, I feel the need to be a little more honest.  My sister and I were talking the other day and she reminded me what a wise choice I made by going back to work.  She's so right!!!

I'm made to work.  I'm made to be social.  I'm made to be busy.  I'm made to teach.  I was NOT made to be a stay at home mom.  Forever, I was in denial about this.  I'm not in denial anymore.  I realize, this is how God made me.  I'm a better mom when I work. I'm a better wife when I work.  I'm using my gifts and talents when I work.  I was just made to work. That doesn't mean I wasn't made to be a mom.  I just wasn't made to be a Stay at Home Mom, and that's OK! For the longest time, I felt that I was a bad mom if I worked.  This year has really taught me a lot. I've learned so much about who I am and who I was made to be.  I'm excepting who I am AND I'm not ashamed or in denial about it anymore.  No more excuses.  I'm Courtney, a mom, a wife, a sister, a friend, a daughter, a teacher and I'M NOT A STAY AT HOME MOM!! And that's OKAY!!! So many of you battle with this, I know.  And for those of you that are made to stay at home, as a mom/dad, that's awesome!!! I think it's great and one of the hardest jobs on earth! I admire those who are stay at home moms/dads.  But I will not feel bad that I'm not. This is HUGE for me.  I'm finally able to breath and relax in knowing who I really am.  I used to always want to please others and fit into what "other" people think I should be.  I'm done with that.  Life's too short!  I'm proud to be a teacher AND a mom.

Yes, my sister, Ali is right.  Making the choice to go back to work this year has been the best decision for me and my family.  It really saved my life.  I was in such a bad place over last summer.  Putting Judy in daycare and going back to work was by far the best thing I've done in a long time.  The best part about it is that I not only get to work, but I get to work with some of the neatest, coolest people ever, I get to teach at an amazing school, and I get to teach some really special kiddos! I'm blessed.  I've made some really great friends with my co-workers, and I enjoy waking up every morning.  My days are filled with joy and when I go home in the evenings, I'm excited to spend time with my family. (Especially now that Judy is being more JOYFUL)!! :) 

I just had to post this, because I know some of you moms/dads are battling within yourselves.  Be who God made you to be! Don't be afraid or worry about what others think.  They need to worry about themselves!!! :)

Short End of the Stick

To start, Judy is doing amazingly well!  She's very joyful these days! However, my baby boy, Jackson, got some bad news yesterday. :( 

Jackson has always been really small. He weighed 6 pounds when he was born. Just a lil peanut! Lets just be honest, Michael and I aren't the tallest, so we never expected our kids to be tall.  Last year we started to get worried because the doctor said he wasn't consistently growing on his growth chart.  He has always been in the 3% for his height for his age.  But the past couple years, he dropped to below 1%.  Doctors didn't really need to tell us this, we already really knew! He the shortest kid in his class and he's the oldest kid in his class.  It's always bothered me, but this past year it has really started to bother Jackson! :( Kids make fun of him.  Kindergartners are taller than him.  Jackson is now 9 years old and in the 2nd grade.  (I held him from starting school till he was 6).

Anyway, pediatrician sent us to the endocrinologist at Riley Children's Hospital (our 2nd home now).  We met with the doctor at Riley 6 months ago. He measured Jack and took a bone xray of his left hand.  I guess the bone in your left hand can tell doctors how much more you are going to grow.  Doc said he wanted to see us in 6 months to check growth.  So, we had our appointment with this doctor yesterday.  Jackson has grown less than 1 inch in 6 months.  This keeps Jackson at the 1 percentile for his height.  Doc said he should be growing a lot more and at a faster rate.  The doctor believes he might have a growth hormone deficiency.  Jackson will have to do a growth hormone test.  This test will take 4 hours.  They take blood from him every 30 minutes and give him some short of medicine- this will show if there's a deficiency or not.  If there is a deficiency, we will discuss growth hormone injections as an option.  Michael and I feel so bad.  Our sweet lil Jackson! He's the nicest, sweetest, most loving lil boy.  He's really sensitive and so he took this news really hard yesterday.  It broke our hearts.  Doctor said if there were 100 nine year old boys, Jackson would be the shortest of all of them.  Jack heard this and put his sweet little head down.  Jack said, "Great, I don't want to be a midget."  He was really upset.  Jack said all he cares about it going to Kings Island and be able to ride all the roller coasters.  My heart broke... my heart aches... It was one thing when Michael and I noticed he was short but now that Jackson notices it- that kills us!!! Kids can be so mean these days, and I don't want my boy to be a subject to this!!

So the saga continues with the Spear's.  We were just starting to breath again.  Can't get cut a break.  I know things could always be worse, but THIS is hard! This is really hard for us.  We are tired.  Please pray that the Lord will give us strength and that my Jackson will be able to handle all this.  My sweet little boy. Oh how I love him!

 

Fish Out of Water

No way! We did a little "staycation" last night at a hotel with an indoor pool! It was a lot of fun.  However, from the second we walked into the pool area, Judy was shaking, screaming, and crying!  It didn't help that Jackson jumped right in.  I think the sound of the splash set her off.  Judy held onto me so tight, for at least 30 minutes.  I have marks on my arm to prove it! She was terrified of the water! I was so bummed because she loves the bath, so I figured she would love the pool.  No way!  Hated it! Bless her heart! Between the sound, smell, and touch of the pool- she wasn't having it! I tried to put her feet in after awhile, she let me do that.  But she freaked if someone came close, made too loud of noise, or anything!  She's so precious! Little Judy's hair got extremely curly from the humidity in the pool area, her cheeks were extra rosey from the heat, and that somber face!!! Oh my goodness! She looked like an angel!!!  My precious little sensory baby!!!

Labels, labels, labels...

So...Mike thinks Judy's fine. He thinks we just have a crabby baby because that's our luck.  He hates the labeling! I told him the other night how I thought OT would be good for her.  He made fun of me because I was using "acronyms" now!  He said he wasn't educated yet on all the acronyms for all the labels we are going to put on our child.  UGH! I know he really thinks that she's just crabby, but I told him, this is not normal.  He said it's our normal.  UHH! Annoying!! I told Michael that he was going to make the blog because I was so mad at him!! We weren't really fighting! We were actually laughing about it and all evening he was making up acronyms for everything.  I am kind of bummed though, because I do believe she has SPD.  I guess it doesn't matter if he agrees or not, we both will still do everything we can to help her feel better.  I guess he just hates the labels.  This is every reason why he never wanted a 3rd child- he knew the baby would be crabby and hard.  And...he was right!  It's such a bummer. Gracie was extremely colicky for 4 months- I mean never stopped crying.  Forever this has changed Michael on his view of having children.  And go figure, we have our 3rd and she's beyond colic! UGH!!!  I could just scream.  She is however doing better still.  The behavioral psych said something interesting.  She wonders if the Valium we gave Judy for that short period of time DID give Judy some relief.  Because the day after I stopped giving it to her, she's been a different kid ever since.  It's interesting and something to consider.  That Valium might have actually helped?! Who knows?!  Just pray this good streak continues and that Michael can accept the labels we find Judy has. Thanks friends! Love you all!!

Great 9 minute clip on Sensory Processing Disorder...

I know this is what Judy has...http://www.youtube.com/watch?v=D1G5ssZlVUw

Could be...

Well, according to the Behavioral Psychologist, Judy could have a bunch of different things!!! Who knows?! Always, the guessing game. Of course, nothing can be black and white.  Still grateful Judy is being joyful!! Met with the psychologist today.  This was the only behavioral psychologist that would see Judy, since she's so young. Most psych's don't see babies.  Anyway, she was very nice. She observed Judy for an hour.  She saw many of the same things we have always seen.  Doc agreed that Judy definitely has Sensory Processing Disorder.  She gave me several things I could be doing with Judy to help her when she gets frustrated (i.e. a weighted blanket).  Doc also didn't rule out autism.  She said that autism has a very WIDE spectrum- and that Judy could fall on that spectrum somewhere.  I'm not so sure about that. Doctor also said Judy could have ADHD.   I really feel like we can't truly diagnose her with something like that until she can speak to us.  Who knows?! Why can't I just get a clear answer?  It's exhausting to always be wondering and explaining her to every single doctor!

All I know is...I'm extremely grateful for Judy! She's just a little lovey!  I can handle the sensory stuff. However, she did bite me pretty hard today and it hurt!! But, she bit me out of love. That's the thing I'm worried about.  Judy expresses herself in very intense, weird ways- like, she bit me today, and I know, she was really trying to tell me she loves me.  I know this because I could tell by her eyes and her body language. I guarantee the teacher and classmate years from now, won't believe that's what Judy is biting for.  Who knows? I just need to take it one day at a time for now. I'm on spring break for 2 weeks and I'm excited to spend this time with my Joyful Judy, Precious Gracie, and Hilarious Jackson!  Today is my Jackson's 9th birthday!! So now, I have a 11 year old, 9 year old, AND 1 YEAR OLD! AHHH! I'm crazy!!!

Finicky Judy

 

 

Well, I guess we could call her Finicky Judy! So grateful to take the Crabby part away!!! But Judy does have some really odd symptoms.  Maybe sensory stuff or OCD?!? Tonight has plenty of great examples..
Judy loves taking a bath (always has)! After her bath, I tried to lay her down to put her diaper on- but NO WAY! Like I've said before, she hates being on her back- she screams! So, I really didn't want to fight her tonight, so I didn't! I let her run around naked for 1/2 hour! She loved it! I decided to put her diaper on while she was standing.  While running around, she plays really hard. She likes to play hard.  She loves to do risky things, things that can hurt her.  Like, she loves to get on top of the ottoman in our family room. Not just sit on it, she wants to stand and then fall off! She thinks it's hilarious, but we know it has to hurt her! It's really odd! Then she gets back up and goes back and forth on it, and topples over again- straight on the hard floor- head first! It has to hurt, but she brushes it off and gets back on.  Nothing she does is soft and gentle. She also wanted me to put her new shoes on. I did and she was thrilled, jumping up and down, touching them, and screamed when one fell off.  I know some of this sounds normal, and it probably is.  But it's really weird when you put it all together.  She's just so intense.  Michael was sitting on the floor with his back up to the couch- she wanted squeeze between him and the couch- she got mad when he wasn't pushing really hard against her.  She laughed and giggled when he pushed his back hard.  Finicky Judy also loves to be held by her ankles, upside down.  Whenever she's screaming, I sometimes hang her upside down and she stops crying.  The second I laid her down on her back to put her pj's on, she started crying tonight! It's just so odd. It's hard to explain her and put her into words.  I just know somethings going on. Super happy that she's not as crabby, but I really want to get to the bottom of this.  I'm just tired of not knowing.

Oh Judy, Oh Judy...

Oh Judy, you just keep us guessing! Judy has really been a different child since last week! We still have NO idea what happened to her!! It's amazing! God is good! I believe he heard OUR prayers! Thanks again for praying! The Spear household has had a completely different tone to it the last week! It's been so refreshing!

The past two evenings though, she still has us wondering if something is hurting her. She becomes extremely irritable quickly.  It's hard to describe and explain.  I've noticed more and more it's when she's laying on her back. It seems like something's hurting her neck or head. Who knows?! The last week though has been so wonderful, that I've been trying not to think about it.  It can make me crazy when I start guessing and wondering what she has!  Maybe it's a couple of little different things?!?! Who knows?  When I start googling- it's downhill from there!  Ha! There's so much stuff it could be! I'm very interetsed in what the behavioral psych has to say about her! She's a baby! But maybe they will have something.

Good news- since this last week, she's started babbling a little bit.  She also has added uh-oh to her vocab.  She still bites and clenches her jaw when anxious- it's weird and kind of alarming.  But again, I'm trying to not go there.  Just taking it one day at a time. :)  Wine will be my choice of medicine for myself this week! HA

UPDATE...

Today, once again, she is... JOYFUL JUDY!!!! Can't believe it!! UNbelievable!!! Keep praying if you have been, because seriously that's the only thing that has changed- more prayers!! I appreciate all your care, prayers, comments, etc!!  We even received a meal from a dear friend of mine and brownies from a neighbor!!! :) You all are too good to us! So nice and comforting to know how many care!  My awesome sister, Ali, is even taking all 3 of my kids today to the museum (along with her 3 kids)! I know, she's crazy!! But so sweet of her!!  I'm still pinching myself to make sure this new Joyful Judy isn't a dream!!!  Guess it's the luck of the Irish! :) 
We have never seen Judy laugh so hard, and be content as long as she has been.  It's wonderful! She still has sensory issues.  She gets really frustrated with things and nervous with things- during those times she clenches her jaw and strains her face for a few seconds.  It's really weird. We are still meeting with the behavioral psychologist next week and starting first steps in a couple weeks.  We will also be seeing the neurologist at Riley (waiting on them to call). 
Once again, I can't thank you all enough for the support and prayers! I will be keeping you updated...more for more good days!!!

                                         GO JOYFUL JUDY GOODBYE CRABBY JUDY!!!

Crabby Judy becomes Joyful Judy?!??! WHAT!????

Amazing! I hope I'm not jinxing myself but Judy has had 2 really great days and nights!!!!!! We are not sure what happened?! Not sure if it will last, but so thrilled at the same time! Judy's been a joy to be around! It's kind of weird! Really, I think it's the power of prayer.  I've never experienced her this happy.  Since I've started this blog (not even a week ago) tons of people have emailed/messaged/face booked me saying that they were praying for Crabby Judy!! I swear that's the only thing that has changed!!  Keep praying- if you are because it's working!!!

Judy was the sweetest lil girl tonight!! My mom came over and got to enjoy her as well!! We have been in shock! Judy was playing, laughing, running around, hamming it up, giving everyone kisses, and didn't CRY once!!!! I'm in shock! Just can't believe it! Is this a dream?! Please let it be real!!!

Sweet Moment!!!!

 So, the past couple days haven't been so bad!  Daycare said Judy wasn't crying so much AND actually wanted to participate in some activities.  Typically, she's very hesitant to get involved in any sensory activities at school.  Judy also slept the past 2 nights!! WOOHOO! Praying this is a new trend!!

Anyways, the "sweet moment"...Tonight I rocked her before bed, she lifted her head, smiled, said "Ma", kissed me, and then laid her head back down!!! I melted!!!! My sweet Judy. Oh how I love you.  Every reason why I'm so eager and determined to find out what hurts you!  I pray you are miraculously healed- but if you wake up crabby tomorrow, I promise to continue my search for answers for you!! I love you, Jud!

Still ????

 

Seriously!!! Seriously guys!!!! I LOVE this little girl soooo much!!! What's wrong with her?!? I'm baffled!  So confused.  How far do I push this? I just KNOW somethings wrong.  Spoke with Riley doctor today.  Since Valium wasn't touching her, she told me I could stop giving it to her.  I hated seeing her on that strong of drug.  It was so weird! Plus, it wasn't helping. Can you believe that? Golly!!!! I want her to be happy and to love life! I want her to explore and learn!!! Doctor now sent me to a behavioral psych.  Waiting to get an appointment with her.  Meanwhile, I have the appointment set up with First Steps for speech.  Should I be doing anything else?!?! I'm her only advocate! AND I KNOW SOMETHINGS WRONG!  Back to giving her benadryl (prescription type) and Motrin.  She's been in bed for an hour! WHEW!  Just waiting on pins and needles to hear her start crying. She'll probably start the second I lay my head down. 

New info- I forgot to add earlier...Judy has been having a lot of fevers recently.  Two weeks ago, she had a fever of 103 for 5 days, no other symptoms except fussiness.  Her pediatrician had no answers for me.  Since then, she has a low grade fever at least once/day.  Usually I associate it with teething. But who the hell knows?! It's always a guessing game.  Sometimes, it's around 101.  Riley doc told me to keep a journal of her temps.  I decided today, I'm going to try to journal everything, so I can show the doc next time.  Day care said they will keep a Judy journal too!  She's also been extremely constipated, which I think is coming from all the meds.  Oh Judy! My little lovey!! Please tell me what's hurting you!!!

PS- Thanks for all the posts, comments, and messages!!! I've been reading them all!! It's nice to know I'm not alone.  It's also nice to know how much sooo many people care!!

There she goes...SCREAMING!!! Goodnight...

INFO on Riley Children's Hospital...Diagnostic Clinic

I have received several emails about info on Judy's doctor.  If you are searching for answers for your child as well and live in the Indianapolis area, I highly recommend this hospital and doctor....

Diagnostic Clinic at Riley Hospital for Children at IU H in MSA1 is opened again and awaiting patients

The Diagnostic Clinic at Riley Hospital for Children at Indiana University Health assists physicians who wish to refer infants, children and teens for second opinions or consultations. We help physicians in managing complex problems or difficult-to-diagnose illnesses. Dr Dorota Szczepaniak Associate Director of Clinical Affairs for the Riley Hospital for Children General & Community Pediatrics at IU Health will be in charge of evaluating patient’s referred by you. To make an appointment call 317-944-2801. Riley General & Community Pediatric at IU Health is situated in MSA1 Clinic.

Patients will be scheduled to fit the needs of the family and referring physician. Our goal is to see the families within 3 days of the referral. To assure that we are effective and helpful, we ask that you fax copies of appropriate medical records, 317-944-5630. Please complete intake referral form to expedite scheduling and fax with other medical records.
The referring physician will be called within 24 hours of the visit and will receive a written report within a week of the visit. If further consultation by faculty members in other medical sub specialties is necessary, this will be arranged after discussion with the family and the referring physician.

Day 4 of Valium...

This weekend has been exhausting, to say the least.  This evening, I'm a wreck.  I feel like I've been hit by a truck.  My emotions are everywhere.  A few hours ago, I went from laughing to crying in seconds! My poor baby is so drugged! It's scary.  Judy seems like she's in another world, not all there.  Her eyes are really the worst.  Maybe the Valium helped a little today, maybe?!? Still, I would think it would help a lot more.  But is it even worth it?!? Poor Judy isn't all there when she's on it.  What am I doing to my baby? I feel crazy.  CRAZY!  I will be discussing this w/ the Riley doctor tomorrow.   :(

She does smile sometimes! :)

PS- Thanks for all your support! Really this has just been a great place for me to vent, and unload.  Thanks for being on this journey with me! It's nice to know how loved and cared for we are!!

The Whole Story....of Crabby Judy and why I'm going crazy!

Crying, crying, crying, crying! She doesn't STOP CRYING! She's fed, changed, and all she does is CRY! She doesn't stop crying. When she's not crying, she's irritable, fussy, or just erratic.

The Low Down...

Where to begin??? I'm a mom of three kids. For 10 years, just a mom of 2 kids. Grace Elizabeth is now 11 years old, and Jackson David will be nine years old this month.  My wonderful, handsome, loving, husband of 12 years, Michael, and I were completely done having children.  The Lord decided we weren't done.  In 2011, I found out I was pregnant with Judith Louise Spear. This was a hug shock to our family (understatement)! Deep down, I had always wanted one more, just would have rather the 3rd child be a lot closer to the first two children.

It was like starting all over again.  My sweet sister, Ali, even threw me a baby shower, because we had gotten rid of everything. My kids were excited! Everyone we spoke with told us that "surprise" babies are the best, that "surprise" babies end up being the parents favorites, and that they always are very easy going.

I know you are saying, "Okay, so what's so unique and crazy about your story?". Well, it all started when I was 7 months pregnant and I got mugged in the alley behind my garage. The mugger simply wanted my groceries, and instead of just asking me for them, he pushed me down and I fell over on the huge garbage bins. I was sent to the hospital because the trauma caused me to start having contractions. Doctors were able to slow them down, and I left the hospital with just a few bruises. One week later, I started having sharp pain in my sides. Found out, I had kidney stones.  These stones caused severe pain. The pain was so intense that they kept throwing me into labor. The doctors gave me Percocet, a drug to ease the pain. I lived the last three months of pregnancy high as a kite on these drugs. Doctors swore to me that it couldn't hurt the baby.  It was horrendous! Not just for me, but my whole family! My kids didn't understand why I couldn't really talk to them, do stuff with them, or get out of my bed.  Needless to say, it was miserable! WE all just wanted her to come out!!!!

Finally, after long hours of labor, Judy made her appearance, December 30, 2011.  There was a HUGE sense of relief and Michael and I felt like, finally we can start living normally again!

RSV to Kick it Off...

Boy, oh boy! We were certainly wrong! When Judy was two weeks old, it all started. CRYING! Judy was extremely irritable. When she was less than 2 months old, she developed RSV. She was admitted into Riley Children's Hospital. Judy stopped breathing several times because of her terrible cough, her lips even turned blue.  It was so scary.

After RSV, things just went downhill from there.  The RSV screwed up the breastfeeding, so I ended up supplementing, then just solely to formula.  Of course, the regular formula didn't settle well with her (I should've figured). So, they put her on the most expensive formula on the shelves. Even with this formula, she still CRIED ALL THE TIME.

Diagnosis...Extreme Colic...Really?!??

Judy fed every 2 hours even through the night.  We had her at the doctors weekly thinking something HAS to be wrong w/ her. Docs put her on reflux medicine, that she continued to take for months, but she still cried.  She had some ear infections, so they put tubes in her ears, but she still cried.  The doctors ran all kinds of tests, ultrasounds, CT scans, xrays, blood work, etc and NOTHING! All negative and still crying! Judy's pediatrician group were stumped and they all felt horrible that they couldn't give me answers.  They labeled her Extreme Colic.

My oldest, Grace had colic. However, the second she turned 4 months old, she was cured. Since then, she has been the sweetest, kindest young lady around.  Judy was now 6 months old and still crying. Docs said it may take till she's 9 months to grow out of this.  We tried to remain hopeful.The crying, fussiness, irritability just kept getting worse and worse. Mike and I were totally losing our minds! Now, developmentally, she's been fine. Actually, she's quite advanced in many areas. She rolled over early, crawled early, etc. But at this point, 6 months, she still was feeding every 2-3 hours, even through the nights.

The weird thing was, she cried all the time, but whenever we took her to a new place/different environment, or was around new faces, she seemed to act fine, for the first couple hours- then she'd get back to her crabby Judy self. Michael and I would complain and vent about her, but no one understood because whenever she was around those faces in new places she would act fine!  UGH! It was so frustrating.  we felt crazy, like maybe it was us or maybe we were over-reacting!?!?! We didn't know!!! We still don't!!! She won't sit still. She's always moving. Judy just can't relax. She won't play by herself, she won't just sit in your lap, always fussing and at our feet crying.  She also gets very nervous and anxious when there's a lot of commotion or in big spaces. She just can't handle a lot of things. As a teacher this started to make me wonder about autism.  However, she talks with her eyes and is very involved with what's going on around her. This then rules autism out for me.

Postpartum Depression...I was going crazy!!!

In July of 2012, I found that I had postpartum extremely bad.  I was having horrible thoughts! Thoughts of hurting my own children.... AND for those of you that know me, know that I would never do anything like that! But I'm being honest here! I was having those thoughts! I couldn't get them out of my mind. The more I tried not to have terrible, violent thoughts of hurting my children, the more I would have them! It was getting so bad, I got so scared.  I didn't want to go anywhere, do anything, didn't want to take a shower, really didn't want to live.  I hated everything.  I simply couldn't pull myself out of this hole. Luckily, my husband intervened and forced me to talk with someone.  I was able to get counseling and was put on a miracle drug that cured me from thinking those things!!

Needless to say, our family was falling apart and Judy was not getting any better! I had to get some time away from her. I decided to go back to work, back to teaching.  I was so lucky because I found a teaching position at an amazing Indianapolis school! I just had to get away from her. Even though I had planned to spend this year bonding with my new baby!! Plans changed! They had to! So, we enrolled her in daycare and couldn't wait for the first day to put her in. 

Falling Apart, FAST...

We continued taking her to the doctor and they continued to tell us that they don't know what she has and hope she will grow out of it! At this point, we are feeling horrible for Grace and Jackson.  Jackson has been sleeping in the basement for a year because he can't handle her crying! Poor Grace, she never wants to have children of her own.  They both feel so neglected and left out! Both wondering what the hell has happened to our nice, sweet, little family of four.  I can vividly remember coming home from my parent's house and all 5 of us were in the car. Oh I forgot to tell you...Miss Judy hates the car, she screams from the moment we put her in until the moment we get her out. So, we were all in the car on our way home, which takes 35minutes.  Judy was screaming at the top of her lungs, Michael and I just looked at each other, took  big breaths and kept driving.  Within 10 minutes, with Judy still crying, all of the sudden we hear Jackson starting to cry, and before you know it, all 3 kids were crying in the backseat ALL THE WAY HOME! It was a nightmare! Michael and I just started tearing up as well. It was the longest drive home. We just kept thinking, what has happened to our family!?!? And all we could do was resent Judy...she has rocked our world! We wanted to love her and really "like" her, but it was too hard to.

School started, I was teaching, Judy was at daycare, and Michael was back to work, things were going ok.  But oh how we dreaded the weekday evenings and weekends. We did dread them b/c Michael and I knew it was going to involve JUDY! I just being honest here. Don't get me wrong, I love her, she's my daughter, but I couldn't stand being around her! Michael and I started fighting more. Both having very little patience and short tempers.  Both having no energy for our oldest two kids! It was terrible! Finally, at Judy's 9 month appointment her pediatrician told me I could let Judy cry through the night, and for me not to feed her through the night.  For a whole week, Judy screamed for 5 hours straight through the night. Finally, she figured out that no one was coming to get her and she would stop. That week was hell on earth! So, finally she started sleeping through the night- not totally, she's still cries a few times per hour, but we put her down and don't get her out until morning.  Judy then started walking early, like around 10 months! She also can get up and down the stairs at this time, which is very early! She's just one determined, feisty, active little girl.  We were hopeful that since Judy became very mobile, this would help her. NOT!!

 

Riley Children's Hospital

Really things just continued getting worse. Constant crying. Some days I think I hear her crying and she's not even around me. Craziness! The pediatrician sent us to Riley Children's Hospital.  She sent us to the diagnostic clinic.  This is the place where doctors send patients that they don't have answers for, patients with mysteries.  Our Riley doctor is like the doctor on the TV Show House.  Dr House!  A team of five doctors sat down with Michael, Judy and myself. We weren't sure what to expect. They spend a hour and a half with us, just talking to us, getting the whole story/history, checking out Judy, etc. It was unbelievable! This happened in February 2013.  Michael and I felt a huge relief for some reason after we shared our feelings about Judy.  It was nice to get it all off our chest and for people to listen to us and not think we were crazy! And that's exactly what they did, they LISTENED! They were amazing! Couldn't really give us answers but promised us that they would keep trying until they figure it out.  They ran lab work, physically evaluated her, and found that she was very low on communication. So, they recommended speech therapy.  They completely ruled out autism. Thank God! Her blood work came back and her levels were high for inflammation.  This made the docs wonder if she could possibly have rheumetory arthritis.  Finally, we felt like maybe we were going to get an answer! Well, they had to have several months data of her blood to determine this diagnosis. So, that means, we were going to have to wait and get her blood drawn every few weeks, so that they could see the numbers. Which meant that we were going to have to live with CRABBY JUDY that much longer!!! AHHHH! We wanted to cry!! How could we be at one of the best children's hospitals in the world and not get answers. ??????

Meanwhile, I forgot to tell you that her daycare providers are amazing! They are gentle, loving, caring, and do really love Judy. However, they even know somethings just not right w/ Judy! I get calls and accident reports weekly on Judy. She falls a lot, and will have these tantrums where she throws her head around and scream, and ends up with bruises all over. These tantrums are like a 2 year old's temper tantrums.  It's crazy! We have to hold her down, so that she doesn't hurt herself.  Well, last week was a breaking point for me...day care said she was horrible all week, she was an absolute wreck at home, and I lost it! I broke down.  I called for the Riley doc to personally call me back. And she did! (She's amazing)! I told her that I know somethings wrong w/ Judy, I KNOW IT! She told me that I didn't need to say anything else, that she would free up her afternoon the next day to see us. 

VALIUM

This leads us to just a couple of days ago.  I took Judy in to see the Riley doctor.  My dad went with me.  Once again, Riley was amazing!!! Spent over an hour with us.  Doctor ruled out many things, such as, allergies, autism, any major organ dysfunctions, etc.  The doctor then looked at me and said, "Mrs. Spear, in all my years of being a doctor, and after talking to plenty of colleagues, we have NEVER seen a 1 year old so irritable, crabby and discontent."  That's when I lost it!!! How could this be happening to me?!?! How could I be the mom of this baby!?! How in the world is she the only one that they can't figure out?!?! UGH!!!  The doc then felt bad, because she didn't mean to make me upset, she was jut trying to let me know that she hears me and is not dismissing this.  She's wonderful.  She then ordered more blood work.  This is because they wonder if she might have rheumetory arthritis.  Some of her levels have been elevated for inflammation.  However, this is simply just a hunch.  She does have communication delays, so she's starting speech with First Steps. BUT I know, this is not the whole problem! Last visit, they did say that she had anxiety, but they weren't sure this could be her whole problem.  Well this time, the doctor talked her case over with plenty of other doctors and decided to put her on Valium!!! Yes, VALIUM! I about died!!!!! They are only going to let her be on it for 3 weeks b/c after that, she will get addicted.  I'm like, you have got to be kidding me!!!! She's going to end up a drug addict!!!! What the hell?!  I do trust the doctor though, and I'm willing to try whatever she says.  Doc said this should completely relax her.  Doctor will be checking in weekly.  So, I got the script....

This will be the 3rd night that we will try it.  Past 2 nights, the Valium hasn't touched her! NOTHING has changed!! Can you believe this?!?!?! That strong of drug hasn't effected her tiny little body at all!!!!! We are in shock!!! We will try again tonight and then I will be calling the doc tomorrow.  Wondering if maybe she needs to be on a higher dose?!?!  Really sad though, b/c the Valium makes her face look weird.  You can tell she's drugged up.  Michael and I have just been sick about this!!!  And we just know, something has to be hurting her, for her to continue to cry with all these drugs in her! :( 

 

Never Ending Story...

So, the story goes...I will try to update weekly, if not more.  If you are a mom OR dad and have a crying baby that won't stop, you are not alone!!!! I'm hoping to reach some of you, that are at the end of your ropes and feel hopeless!!! We are right here w/ you!!!  Please pray for the doctors and Baby Judy, that we will find answers!!!! I just need answers!!!!!