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.