Picture update!

1st time with 2 piggies....soooooooooooo cute!!

Eva has mastered getting up on the beanbag with no help.....it's a lot of work.

92 degrees!!

With the great weather this weekend, it really felt like summer!  The kids spent a lot of time outside and I was thankful that Kira was feeling better and able to join in the fun!!

For you, Uncle Jer......

Super bug continued....

Just a quick update...

Kira is still home from school and will be missing the 3 Piggie Opera at schoo....we don't need to go into how that went over.  I am taking her back to the dr this afternoon....something needs to change because she is still coughing like crazy and running temps off and on.

Dylan is missing his last day of preschool in the classroom today....tomorrow is park day and I hope we can make that but I'm not holding my breath.  He still has a temp.

Eva, well, I don't really know what's going on with her other than she's not sleeping and is a bear.  I'm thinking of calling the drs office and seeing if I can bring her in when Kira goes.

Did I mention the weather has been beautiful and all I've gotten out for is to hang diapers to dry?  Exciting stuff!!! :-)

BUT even with all of this going on, I know people who have much bigger tough stuff going on so I tell myself that this will pass and I make a batch of rice krispie treats! :-)

Please pray for this little boy....my heart is heavy for this family.  And hug your little ones tight!

http://www.caringbridge.org/visit/benjaminricketts

And pray for my sister-in-law Valerie's family who lost an aunt yesterday.......it happened quickly and I know their hearts are heavy.

She's a big girl.....

Our germs in review....

I've come to the conclusion that we have some kind of super germ in our house.  Just because all I can do is laugh, here is our "super germ" in review.

April 18: Jason gets a cold

April 20: Dylan has congestion and cough...nothing major

April 22 and 23: Kira had really off days at school...knew something was brewing.

April 24: Kira starts with  fever, cough and congestion

April 27: Kira starts oral steroids

April 28: Kira spikes crazy high temp, dx with pneumonia and ear infection

April 29: Kira to ER in middle of the night with terrible wheezing

Kira has missed a week of school

May 3: Kira still home sick, Eva starts running a fever and runny nose

May 4: Kira starts 2nd round of oral steroids

May 6: Eva to ER with 105+ temp, labored breathing...dx with severe upper respiratory infection

May 7: Kira has missed 2 weeks of school!!

May 8: Dylan wakes up throwing up in middle of the night (Happy Mothers Day to me!)

May 10: Kira finally back to school, Dylan feeling better, Eva just has running nose and little cough left

Mommy thinks that this bug has moved out of our house.......

May 15: Kira starts coughing again and acting off...what the heck!
May 16: Kira has high temp AGAIN, terrible cough AGAIN, back to urgent care AGAIN only to find out that her pnuemonia is back or was never gone to begin with! AHHHHHH! but wait....

May 17: Dylan wakes up with fever after nap (102+)...Mommy slowly begins to have a nervous breakdown

May 18: Eva wakes up in the middle of the night with a fever (101+)...Mommy is just going to check out now! :-)

So, now it's May 19.......Kira is still home from school but has no fever.  She seems to be feeling better.  She slept all night hasn't thrown up in 24 hours.  Dylan still has fever and is a bear.  Eva is taking a nap but is really off and as soon as the Motrin wears off, her fever comes back.

Kira and Dylan are watching movies AGAIN....I don't even want to know the hours that they have spent in front of the tv in the last month.

I'm hoping that Jason and I get our date night on Friday night but not holding my breath.

I'm hoping that Kira can get back to school because I don't want to have to tell her that she has to miss her spring concert....The 3 Piggie Opera...she's only been talking about it for months now.

It's Dylan's last week of school and I'm parent helper on Thursday.....

And Mommy WILL NOT get sick, WILL NOT get sick, WILL NOT get sick!

So....Mr Germbug, please get the heck out of my house.

Cute.......just cute.

Is she cute or what????

Eva is going to be getting Sure Steps...can you imagine how tiny they are going to be?  I think that will be pretty darn cute!  So tiny!!

Baby in a basket and more.....

This was lots of fun until she tipped over!

 

She's getting so strong!!!

Dylan started swimming lessons today and never quit giggling!  It was so cute!  He loved it!

To you my sisters......

To You, My Sisters

By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Before I was a mom......

BEFORE I WAS A MOM

Before I was a Mom;

I made and ate hot meals,

I had unstained clothing,

I brushed my hair every day,

I had quiet conversations on the phone,

I slept as late as I wanted and I slept all night long.

Before I was a Mom;

I cleaned my house each day,

I never tripped over toys or forgot lullabies,

I didn't worry whether or not my plants were poisonous,

I had never been puked on, pooped on, spit on, chewed on, peed on, or

pinched by tiny fingers.

Before I was a Mom;

I never thought about immunizations,

I never held a screaming child so the doctors could give shots,

I never looked into teary eyes and cried,

I never felt my heart break into pieces when I couldn't stop the hurt,

I never got gloriously happy over a simple grin.

Before I was a Mom;

I never held a sleeping baby just because I didn't want to put it down,

I never sat up late hours of the night watching a baby sleep,

I never got up in the middle of the night to make sure everything was okay,

I didn't know how special it could feel to feed a hungry baby.

Before I was a Mom;

I had complete control of my mind, my thoughts and my body,

I didn't know the feeling of having my heart outside of my body,

I didn't know that having something so small could make me feel so

important,

I had never known the warmth, the joy, the love, the heartache,

the wonderment, or the satisfaction of being a mom.

Before I was a Mom;

I never knew that something so small could effect my life so much,

I never knew that I could love someone so much,

I never knew I would love being a Mom,

I didn't know the bond between a Mother and her child,

I didn't know I was capable of feeling so much.

Just another night......

In the ER!  UGGGGG!  Yesterday Eva started to seem a little worse so right before her drs office was going to close I called and got an appointment for today at 10:30....1/2 hour later she spiked a temp of 105+ and started to breath really fast.  I called Jason at martial arts and told him he needed to come home and Off we went......

They got us right back and her temp was still close to 103.  They examined her and after cleaning her ears out to get a good look, collecting a urine sample via the cath. finally decided that a chest xray was in order.  I was getting annoyed that they didn't really seem to concerned about her breathing.....

She DOESN'T have pneumonia, yet.  She has a bad viral infection that has settled into her lungs that could easily turn into pneumonia.  Hoping it doesn't.....

She was soooooooooooo tired when we got home around 10:00 PM.  She nursed a little and slept until abotu 1:00 AM when she nursed FOREVER!  I was just glad she was eating even it was the middle of the night.

She woke up this morning running a 102 temp but after some Motrin has perked up a little.  I'm hoping we'll make it through the weekend with no more urgent care/ER visits...I'm pretty tired of them at this point!

Kira is still home today...she's missed 2 full weeks of school. :-(  She's much, much better and I'm sure she'll be back to school on Monday.  YEAH!

I'm off to snuggle my baby for a bit!

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some

2. Because we’ve discovered patience we never knew we had
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Cool Mommy! I'm going to move this tree.....

But he quickly decided it was "toooooooooooooooooooooo big for a boy like me!"

Jason is out checking the roof right now.....we had been saying that we needed to this tree looked at since it's right over our family room.....I think that this sealed the deal on that one!

Germs be gone!

Kira is doing better but not even close enough to be able to go back to school. :-(  I talked to her dr yesterday and he started her on 5 more days of oral steroids in hopes of that really helping.  We got the 1st dose in her last night and another already this morning so only 3 more days to go on that.  She's not going to make it back to school this week....way too much coughing that leads to her getting sick.  Hopefully this round of steroids will do the trick and we'll be able to get her out the door on Monday morning.

And as it usually works out around her, Eva isn't feeling well now.  She was running a high temp yesterday evening and I'm pretty sure that she ran one over night.  She was very restless, coughing a lot and didn't spend much time in bed....which means that Mommy didn't either.  Her temp is much lower today so we're going to see how she does this morning and then decide what to do.......

So that's the scoop here.....

Just cuz she's cute!

I had a rare few minutes with just Eva today since Kira and Dylan were both napping......I love it when I have just Eva time.  In the mornings when Dylan is at school, she's usually napping so that doesn't really count.

I love this outfit and was worried it would be too small but she has room to grow!!  YEAH!

I figured since it was quiet I'd see if I could get her show-off some of her words....I got a few!  And I have to add that this is the longest I have ever seen her stand too!!  WOOT!

Today.....

Today I felt overwhelmed.

Today I cried.

Today I questioned "why?"

Today I wondered what was next.

Today I was thankful to look into my 3 beautiful childrens eyes and know that even though I am feeling what I am, they are worth it.  I just love them.

So I'll start with my coughing, hacking Kira.  She's still coughing and hacking.  She's definitely starting to feel a little stir crazy I think tomorrow we may just go for a short drive or something.  I had heard people say how yucky pneumonia is but I hadn't ever really been around anyone with it....let me tell you.  This crap sucks.  I can't believe how long it can drag on.  She's perking up a lot and actually enjoyed bathtime tonight.  She's asking for things to do now and wants to be up and around more.  The hard part is she wants to do more than her body is ready for....wrestling and running with Dylan is only going to lead to lots of coughing so my dear girl, just don't.  She has to be getting tired because we've had many middle of the night neb treatments and I know it takes her a bit to get back to sleep afterwards.  No school yet tomorrow and Wednesday I won't send her since her class is going to a nature preserve that is not wheelchair accessible which would mean lots of walking....I think not.  MAYBE by Thursday she'll be ready to head back....I hope.

Dylan has been enjoying his evals with the PT and OT...he's grown up with Kira having therapists in and out of the house so it's not really new to him.  It's been interesting for me to watch as he works on what they are doing with him....fine motor is definitely an issue.  We have one more eval to go and will meet with all 3 therapists on May 14th to see what they have to say and see if they think he could benefit from any therapy. 

Dylan has been enjoying being outside and I know that he will not be happy when it cools down later this week.  He's completely fascinated with going outside and attempting to catch squirrels and bunnies....and he yells at birds.  He tells me that he wants them to be his pets....keep dreamin' boy!  This is what he was out in the backyard chasing animals with...flashlight and all!

And now for sweet, adorable Eva.......she's getting a cold but so far it nothing more than a little cough and congestion.  Let's hope that it stays that way.  We had her 6 months follow-up with the allergist today.  She's been having a lot of hives and he agreed that we need to attempt to find a cause but also said that you don't always get answers for them.  So, he had a bunch of blood tests that he wanted done.  I honestly can't remember what they all were but some were to make sure that there's nothing else besides allergies causing the hives, some are to check certain levels of allergies and then there's those that I can't remember.  He said that he would call if anything showed up.....hopefully I'll just get a letter that says everything is normal there! ;-) 

We did find out today that she is allergic to mangos and pineapple...so we're going to avoid all tropical fruit just to be safe.  She is also allergic to Hemp milk so we're going try ricemilk again and see how she does with that.  She had a reaction to goat's milk awhile back but I thought she was fine with goat's cheese but we're done with that now too.  And here's the kicker.....she's allergic to the sodium polycrylate which is the ingredient that makes the diapers so absorbate.  Hmmmm.....so we're heading for cloth diapers.  I'm not looking forward to the extra laundry but she has had a rash/eczema for so long in her diaper area that we need to get her some relief.

We're changing a her allergy medications a little too so hopefully that will give her some relief too.

Other than that, there's really nothing going on around here...... :-)