A Long Time

It has been a long time since I have updated this blog.  Life kind of got in the way.  With 4 kids, it is expected to get busy, but with our 4 kids... Well life is nothing if not interesting.  I am going to give a brief rundown of what we are working with right now, then I will come back and give each child a bit of special time to go more into detail on what challenges they are facing and how we are working with them.

Remember, you are Unique.... Just like everyone else!

Frog:  Frog has had a very prominent position in this blog.  He has Autism, ADHD, PICA and Anxiety/Depression.  We are working hard to find an even balance between a healthy home life, school life, and friends.  This is not easily come by and we are not there yet, but there is hope for the future.

Monkey:  Over the past year and a half, Monkey has faced some major medical issues.  We had some surprises and came out with some new diagnosis's.  Monkey has Asthma (which we suspected) and Crohns Disease (which we had never even heard of before last September).  This has been quite a long haul and I will do a weekly post on what Crohn's disease it and how it effects a 12 yr olds life.

Ladybug: So you have to have humor to face the world and sometimes it comes out in a dark way.  J and my running joke was Ladybug was our test subject.  She has always been "neurotypical" and hasn't had any major medical issues (beyond breaking random bones :P).  Well last week we had Ladybug evaluated for speech since it can be very hard to understand her and it has been determined that she has a speech impediment and needs speech therapy twice a week.  Thankfully it is an issue that will be easily resolved with therapy.

Butterfly:  Ah the youngest and smallest.  For those that say the baby is the easy one... Eat Dirt!  Butterfly had a very rough first year and we could not discover why.  Well in March, with some help from her doctors we discovered she had a dairy allergy.  Never having had to deal with food allergies before, this was a new one for me.  Eliminating dairy helped a bit, but not 100% so back for more testing.  In August, when Butterfly was 14 months old, we discovered she is not only allergic to Dairy, but also Wheat, Potato, Oat, and Nickle.  Goodbye easy meals.  Hello having to make EVERYTHING from scratch... add the fact she is just over a year and everything on the floor ends up in her mouth, well has anyone invented a muzzle for kids yet?  jk... Kinda.

So I will attempt to do a post a week on each child and each issue as they face it.  There will be some recipes as I find great foods that Butterfly can eat, some humor (hey we all need a good laugh) and probably some griping and groaning as needed too.

4 Years

4 years ago at 4:30 pm J and I said our vows before our family and friends.  We celebrated with dinner and dancing.  J and I danced our first dance to George Straits The Breath You Take.

Life's not the breaths you take... 

... But the moments that take your breath away. 

Our wedding September 25, 2010

 
 

 

 

 

 

 

 

 

 

 

The Birth of our first daughter Ladybug,

 

Doing Homework with our youngest son, Monkey,

 

 

 

 

 

 

 

 

 

 

 

 

National History Day with our oldest son, Frog,

 

 

 

 

 

 

 

 

 

 

 

The birth of our baby girl, Butterfly.

 

And so many more moments that bring joy to my heart both the extraordinary and the ordinary. 

Thank you my love for another year full of moments that take my breath away.  I love you.

1 Month

Beautiful Butterfly

July 14, 2014

Weight- 10 lbs
Height- 20.5

Sleeping Patterns- For a little one Butterfly sleeps really well.  She goes to "bed" about the same time as Ladybug around 7:30 and we are reliably on an every 2-3 hour shift for meals.  I don't mind as it is steady at least.

Food- Butterfly's sole food for the next few months will be nursing from me.  We have had a few issues as she has such a tiny mouth and she is technically a late term premie.  I have to work to keep her awake long enough to eat and she eats frequently for short amounts of time.  We are also using a nipple shield to help her latch and help me heal.

Milestones- Butterfly is just getting to being more aware of the world around her. 

27 June 2014- Lost her belly button stump.

2 July 2014- Due Date.  By this point she was already 18 days old. 

4 July 2014- She has had her first family get together for Fourth of July and was able to meet an Uncle, a Great Aunt and Great Uncle, and she got to hang out with two sets of grandparents. 

Etcetera- This month has been a whirl wind month and it seems like it has just flown by.  Butterfly got to meet a lot of friends at church during the closing mass and picnic from Vacation
Bible School and has meet friends and coworkers at both mommy and daddy's offices  She is currently just an added thing to carry and easily transportable. 

First Real Bath

 

Fourth of July

 

 

 

Special time with Brother and Sister  &   Beautiful Sweater from God-mother.

 

 

Presenting a Fluttering Butterfly

She is so tiny from her head to her toes and she is well loved wherever she goes.

Announcements Part 2 AKA Welcoming a Butterfly

At the hospital after checking in with admissions we headed up to labor and delivery.   There were many ladies that had just delivered so we were put in the spare room.  We drank our coffee and hung out waiting for the docs and nurses to finalize all the boring check in stuff they needed to. 

And take one last belly shot :)

About 8:00 a real room was ready and we transferred over to get the party started.  At 9 a Cytotec was inserted to try to get things started.  I had to lay for two hours with the little machine that goes thump thump thump watching squiggly lines.

After two hours I was released to walk the halls.  45 minutes walking circles, 15 minutes on the machine.  This happened for another 2 hours.  Yay...

I came back from that to find things just weren't moving.  Time to move on to the nasty stuff.  The Pitocin.  They started on a slow drip and for the next many, many, hours I was tied to the bed.  Tied to an IV pole, Butterfly had to stay on the heart monitors, so no walking the halls and not able to eat. This child better understand how much I love her :)  Also since Butterfly had to stay on the heart monitor, I had to stay in a position that would facilitate this.  The way she was laying in my pelvis meant I had to be standing straight up and bent sideways a bit or laying on my right side.  Those were the only positions they could get any type of steady info.  It was frustrating because it made it where I couldn't help move things along faster.  I couldn't do squats or bounce on a birthing ball as she just was too deep.

An attempt to lay on my left... Didn't last very long, but it felt good to move.

 

About 5 the Doc inserted a Foley Catheter to attempt to get things moving faster.  This was NOT a pleasant experience.  It was fricking painful.  But it did its job.  We were able to break my water about 9 and we bumped up the Pitocin pretty high as well.  Butterfly needed to make her appearance and she was resisting so we needed to force the matter.  I also got my Epidural at that point.  I knew that I had made it a good way and sometimes the Epidural can cause the mom to actually progress faster since she can relax.   

After I got the Epidural it was sweet relief for a little bit.  Then I developed what is known as a hot spot. This is an area in particular that the meds don't work in for some reason or another.  It made it doubly hard for me since I had to stay laying where Butterfly would stay on the heart monitor, but sometimes rolling over helps the meds distribute more evenly.  It didn't and the nice Anesthesiologist came back to adjust things.   Sweet relief x 2

Midnight came and went and we were not on June 14th we missed the 13th by a few hours, so poor thing wont get Friday the 13th birthdays.  Doc checked me again and I was still at a 7, we figured we were looking at delivery about predawn, 5-6am.  I chased mom out the door to get a few hours of sleep as she was watching the kids for us that weekend. 

About 1 I started to notice another hot spot forming and I called the nurse again.  Instead of summoning the anesthesiologist, I asked to be checked.  Lo and behold it was time to party!  She went and woke the Doc up (who was sleeping in a doctors room down the hall) and then broke down the table.  We kept the lights low but turned on some really bright ones so the doc could see and it was time to push.  First push and I had to stop twice to let things stretch, second push stopped twice and third push and she was out. 

My beautiful little girl was placed right on my tummy while we rubbed her to try to get her more awake.  She was really quiet and having a hard time figuring things out, so once the cord was cut by DH she was taken to the warmer for some oxygen.  As much as I wish she could have stayed with me, I know she needed some extra attention. 

 

Daddy's hand is so big!

Little bits took a bit to pink up and she had low blood sugar which led to DH having to give her a bottle of formula.  Her APGAR's were 7 then 9.  I was bleeding pretty heavy so I was given an extra bag of Pitocin and a shot to help slow things down.  Then we were moved to the Mother Baby unit.  It was about 5 am when we got there, and I took a shower and then it was bed time. 

So please welcome our beautiful little one.  Our Butterfly...

Announcements, Announcements, Announcements!

So much has happened over the past few months that I don't know where to start.  So we will start here. 

Presenting for your pleasure, Butterfly. 

This little lady joined our happy household at 2:32 am on June 14, 2014 at 37 weeks 3 days.  She came into the world a whopping 7 lbs 8 oz, and 19.5 inches long.   We are all so blessed to welcome her. 

Gory details part 1 for those interested...

On May 24th my loving Husband returned from his 3 month tech school in Mississippi.  Yay!  the ability to share some duties around the house.  Such a relief.  I was a bit itchy when he got home and it continued to get worse.  I chalked it up to end of pregnancy and dry skin.  The last weekend of May the itching was so bad on my hands and feet that I actually had scratched raw patches on the tops of my feet.  I called the Doc on Monday June 2 to see if there was ANYTHING that could be done.  It was miserable. 

The doc I spoke with was concerned the itching might be a sign for ICP or Intrahepatic Cholestasis of Pregnancy.
  
                Briefly ICP is when pregnancy causes the mothers liver to not filter bile correctly.  For the mom problems can be issues clotting, severe itching, and premature labor.  For the baby, it can cause meconium ingestion, fetal distress, and still birth.  Basically nasty stuff all around.  One of the early signs is itching of the hands and feet due to the bile salts not being filtered by the liver.  The only solution is delivery.

Back to my story, I went in on Monday June 2 to have blood drawn on my way home from work expecting to see the doc on Friday.  Wednesday evening I got a call from my OB's office saying I had ICP and I needed to see the doc on Thursday asap.  J and I went in on Thursday to hear Congratulations, you are having this baby next week, pick a day.  While I was glad to have an end date in sight I was a bit disappointed to not have labor actually start at home and to get to try to go without the Epidural.  I knew by inducing at 37 weeks labor was more than likely going to be long and forced which equals painful.  J and I picked Friday the 13th as a birthday thinking not only was it Friday the 13th but it was a super moon and how cool would that be.  Before I left the office I had to have a Fetal Non Stress Test or NST to make sure our Butterfly was still fluttering by.  We scheduled another NST on Monday to make sure all was doing well and then left to make arrangements to have a baby.

The rest of that week and into the next week I was on orders on base due to an exercise, so I had the pleasure of trying to finish projects for my regular job via telephone and with one day in the office.  It was busy.  On top of that on Sunday I rolled my ankle and had to spend 4 hours in Labor and Delivery to make sure I wasn't in labor early. 

Thursday evening all the kids trucked over to Grandma and Grandpa's house to stay the night.  Friday morning DH and I got up at an unearthly hour of the morning, called to make sure we were still on the books, and then showered and headed out.  We stopped at Starbucks for breakfast because I knew it would be the last time I got to eat until everything was over. 

School Update for Frog

Since October we have been working with the school district to try and get Frog a TA to help him in class.  Frog has had a hard time transitioning to middle school organizational and responsibility requirements.  This leaves him trailing in the highly gifted program he is in, even though academically he is right where he needs to be.  It has taken 8 different meetings with various people in the school to finally get a work around for a TA assigned.  We have had Therapists, and Psychologists and Specialists in all flavors contact the school on our behalf and we have finally made progress.  A brief rundown of how our meetings have gone is as follows.

Oct 30- We had an IEP meeting to discuss how Frog was failing in his classes and how we can help him improve.  TA was mentioned but dismissed as to invasive.  Instead he was placed in a study skills class to help with breaking down assignments and organization. 

Dec 20- Second quarter ended and due to an insane amount of missing assignments, disorganization, and an inability to translate spoken direction into a written project Frog still was not progressing towards his goals.  It was hoped that the new semester would help him get organized with a fresh start (once again the school district dismissed my request for a TA.)

Jan 7-31- Teachers observe that the new semester and supports put in place in October were not of any help at all and Frog kept getting further and further behind in the expectations of 7th grade.  (As I had been telling them all along) Teachers

Jan 31- Another meeting to assist the team.  They asked more in class assistance as nothing so far was helping.  Special Ed teacher was kind enough to shadow Frog and come up with a list of ideas to implement along with submitting another request for a TA for Frog.  

~At this point and time I realized the school was making no progress with the district and I took it into my hands to step above them and contact the district myself.  There were numerous comments made to me to include "Well to support your son we would have to pull support from students that are of a higher need" which irritated me to no end.  Sorry someone else needs help, but their parents should be in here pestering you about it too. I can only concentrate on getting what MY son needs!

Feb 20- Another meeting this one with District representation to justify to the district Frogs need for a TA.  District states only with data can they provide him the assistance he needs and data doesn't show that it would help currently.  A decision was made (that I was very vocal I was not happy with) to assign Frog a TA for the last 5 minutes of class to help him get organized to ensure his homework at least got home ok.  While this helped tremendously with the homework issues, it obviously did nothing for actual in class study time.

Mar 24- ANOTHER meeting held to discuss how things with the TA were going.  More ideas were suggested to helping Frog during class time.  At this point the IEP team has been in agreement since JANUARY that Frog needs additional help in the classroom beyond what they are able to provide.  The entire battle has been against the school district who keep replying there is no funding for the assistance. 

~After this meeting, and multiple calls to the School District Special Ed Coordinator for our region, I decide that more power is needed.  I contacted the Disability Law Center to get legal help and advice.  They started contacting individuals on our behalf to see why nothing was being done to help my son. 

Apr 9- Another meeting with the IEP team and a few extras.  At this point it was written in Frogs IEP that he would have a School Staff Member act as a TA for his four core classes.  YAYAYAYAY!!! Progress, sweet progress.  This was written into the IEP TODAY and the five day waiting period prior to implementing a new IEP was waived.  This IEP will be in effect until the end of October this year when we are due our yearly review unless the entire team (to include me) agree that it needs to be revised.   We also wrote in that Frog is to have an alternate to the lunch room as the lunch room is not a safe or conducive location for him to spend any time.

So it only took us essentially his entire 7th grade school year, but Frog is finally getting the assistance he needs to work towards becoming self sufficient in class.  While I know this isn't our last battle, I truly hope it is a turning point for the war.  I am so thankful for Frog's teachers who kept pointing out how smart Frog is and how he is fully capable of being a functional adult who goes on to do great things.  He is capable of going on to an Ivy League college and being successful in anything he wants as long as he gets the support now.  THANK YOU to the teachers that have supported us this long and never gave up fighting for my boy.