In 2009, I'm thankful for.......

This beautiful baby girl.....

Who decided to follow in her sister and brothers footstep and visit Special Care, making Mommy cry....

Is now a happy, loud, thriving 10 month old who makes me laugh every.single.day....

I am also thankful for this little boy who challenges Mommy daily with his temper but is also sweeter than sweet!

He adores his big sister and is falling right into the roll of "annoying little brother" at time and has become quite the protector of his little sister....their bond is strong!

And then there's my first baby girl.....even though she HATES it when I call her my baby, she always will be.  I am thankful that she has grown so much in the last year.  She loves school and loves her friends.  She jumps into each day with 2 feet and gives it her all.

She loves her brother and sister and has definitely figured out the roll of big sister....bossiness and all! :-)

And I'm thankful for all her goofy grins!!

2010 HERE WE COME!!

Matching Sisters!

Ever since Kira found out that she was going to have a baby sister, all she's talked about is having matching outfits.  Since they are almost 6 years apart it's not always easy to find matching outfits so Kira was THRILLED when I found these outfits although a little put out that I hadn't gotten the same color pants!  Today is the 1st day that they have worn them at the same time and Kira insisted that I take pictures....although they aren't the best pictures! :-)

Ohmygosh MOMMY!

"When I'm 6 years old in not too many days, I will be a 1st grader!"  And let me tell you that there was NO convincing Miss Kira that that's not the way it works! I'm sure that she has this little idea planted in her head because she's in a K/1 class this year....I decided that I'll just let her teachers handle this one! ;-)

I know that Kira is really missing her friends and teachers...she tells me several times a day that she "just misses everyone so much!"  I'm glad that she loves school and has adjusted so well........that is a bigger relief to Mommy that I can even explain.  She did tell me today that even though she misses her friends, "it's sure nice to take a long nap everyday!"  Yep, school still wears her out.  Jason and I have talked about this a lot and wonder if the day will ever come when either she isn't so tired or she fights the fact that she is tired.  I know that kids with CFTD do struggle a lot with faitgue so I'm betting that it's not something that will go away.  For now, we'll just enjoy and respect the fact that she knows when she's tired and needs to sleep.

How is it possible that we will have a SIX YEAR OLD in just 15 days???

This 10 month old baby girl.......

Is about as sweet as they come and is getting so big!  It's hard to believe that in less than 8 weeks, she will be a year. (and have I mentioned that in a mere 16 days I will also have a SIX YEAR OLD!)  Up until the last couple of days, she has slept right next to Mommy in a bassinet and then a pack and play....her crib was the worst place in the world apparently.  But Mommy decided that it was time for Eva to find out that the crib is not a terrible place.

And while Eva may not be completely convinced yet....we're getting there!  She's napped there for a few days and last night we decided it was time to share a room with Sissy....Sissy wasn't 100% convinced either but Mommy and Daddy were.  We had a successful night!

And this morning after her nap, I even was greeted with a smile instead of screaming!  The crib is good!

See baby girl...Mommy knew what she was talking about...the crib is much better than the pack and play.  I'm sure you'll come visit from time to time but I know that you and Sissy will LOVE sharing a room ,right!?

NOW...let's hope that MOMMY sleeps better tonight instead of worrying all night long! :-)

And FINALLY it was time for presents!

Kira could hardly contain herself when she woke up on the 26th...she knew that her cousins were coming and it was "present day!"  I don't know how many times I heard her ask if they were almost here?  Are they in their car?  How much longer?  She was one excited girl and of course, when Dylan figured out that she was excited, that meant that he should be excited too!

Getting ready to open presents!

Kira and Eva got to open the 1st present.....so excited! Anna was ready to pass on some of her Xmas cooking goodies!  Xmas apron, whisk and spatula!  Kira has already used them!

Waiting his turn was NOT easy but what can you expect from a 3 yr old!  He was thrilled to get some Trio blocks which Mommy has already discovered hurt just as much as Matchbox cars when you step on them in the middle of the night! :-)  Daddy and Dylan have made many creations together already.

And what more could a 10 month old ask for...tissue paper and a box!  She's good to go!

Grandma and Grandpa VK

Dylan was couldn't wait to get Chuck out of the box and had loves clapping his hands to make Chuck follow him as he laughs running away!

My little bookworm got a Snuggie and more Judy Moody books...we're already almost done with one of them.  They are a little tricky for her but she loves the challenge and does NOT like help unless she asks for it!

Mommy is disappointed with herself that she didn't get a picture of all 3 kids together since they looked so cute in their coordinating outfits...I also didn't do a very good job of getting pictures since it was Eva's 1st Christmas. :-(  Oh well....I have some and that's a good thing.

We had a great weekend but it's always good to be home.  We've spent lots of time racing cars on a new Matchbox car track, building with Trio block, playing lots of new games that Kira received and reading books. Now Kira's already talking about her birthday.........

They ALL were on the nice list!

Kira and Dylan could hardly stand it on Christmas morning!!  They could not wait to see what Santa had brought them and waiting for all of us to be ready was torture!!!  It was so fun to see them so excited this year.  When we finished looking at their stockings Dylan said, "I want another stocking!"  He was determined that the fun was not over yet!

How much longer Mommy?? 

Digging in!

Hmmmmmm.....

Still diggin' in!

Eva decided that if everyone else was happy then she would be too...

Dylan was THRILLED with his Car Movie toothbrush...good job Santa! :-)

After all the excitement ended, Grandpa VK made pancakes and eggs fro breakfast and both kids proceeded to inhale more breakfast than I have seen them eat in a long time.  It was a quiet day since we weren't heading to Story City due to the weather....it didn't really feel like Christmas to any of us.  At bedtime, Kira asked me if it was Christmas and then told me that it sure didn't feel like it since she didn't get to open presents!  Luckily, she understood that presents would happen on Saturday but I do see how that was a little disappointing for her...darn weather!!!

LOVE this girl!!!

Be back soon with lots of Christmas fun!

Am I on the nice list???

Tonight as I was getting Kira ready for bed, she asked me if she was on the nice list or not! I had to laugh because if she had to ask, maybe she should be worried! I assured her that she was and that I was sure that Santa would be stopping by to fill her stocking!
Kira had a busy weekend last weekend....she had Xmas Program Practice at church, then a Holiday Party with Daddy at his martial arts studio, Sunday School on Sunday followed by her Christmas Program. She did so well. I was so proud to see her standing up in front of the church singing and even doing a little dancing! She has come so far!

These video clips are each about 30 seconds long....there's just something so stinkin' cute when kids are singing!!






Happy Holidays!

I'm making an early New Years Resolution....

I WILL blog in 2010! I WILL blog in 2010!

I really want to get better about blogging and keeping people up-to-date with what's going on in our lifes. It's gotten too hard for me to keep the kids websites updated......if I'm going to do it, I want to do it regularly not just once in awhile. I just realized that the last time I update Dylan's journal was in JANUARY! Oops! I think with a blog, I'll be able to do quick updates and post pictures and all the kids will be in one place....atleast that's the plan for now.
:-)

Since Kira has been out of school since the 18th, I needed to find a few things to do earlier this week. She was set on seeing Santa so off we went to the mall. She anxiously waited for him and went right up to him with the picture that she had drawn....when it was time for a picture her enthusiasum changed a bit but she did it. There was NO WAY she was going to go ANY closer but she did it. She was so proud of herself. As I expected, Dylan would have stayed all day....Eva wasn't so sure this time around and went from crying to smiling to crying to smiling several tiems. The outfit that Eva is wearing is what Kira wore for her 1st Xmas too....I love the hat that goes with it but Kira was going to have NOTHING to do with it! NOTHING at all! :-)



Wishing everyone a great holiday season!

I am thankful for....

these 3 beautiful, challenging, adorable children. I am blessed.

Bad blogger....

Did you know that I have written many, manay blog posts over the last couple of weeks?......in my head! ;-) Does that count for anything? Not really, I know! Busy, busy, busy around here...so until I can fill in on all the wonderful happenings in our lives....here's my babies!! One of whom turns THREE tomorrow!

Stuff...

Kira had a great time at the baseball game! I have pictures but once again, my darling-almost-3-year-old has gotten ahold of my cord and I can't find it. It will show up, it always does! :-) Let's just say that she's still talking about it.

Jason and I leave tomorrow morning for Wrigleyville......here we come Chicago. I'm so looking forward to some time with my hubby. With 3 kids, I feel like we just don't have a chance to talk and focus on our marriage like we should...it's a balancing act and sometimes I don't feel like it's very balanced.

As excited as I am, I'm leaving with lots of nerves too. I know the kids will be fine..my parents are here but we're in a wait and see stage with Eva right now. UTI and ear infection, maybe. Allergic to the only oral antibotics that will take care of the UTI but we can't retest right now because she still has antibotics in her system. So we wait...we have to wait and see if she spikes a temp again which would probably be in 48-72 hours. If she spikes a temp, we have to go to the ER and possibly be admited for IV antibotics. I am praying that the 1st urine was contaminated and everything will be fine....but I'm nervous about leaving her. Sigh...why does this happen right when we're ready to go? Kids just know! :-)

Please, please, please let her have fun!!!

Jason and I were supposed to go to a Madison Mallards baseball game tonight but I spent the afternoon with Eva at Urgent Care....she has her 1st (and hopefully last) ear infection and possibly a bladder infection too. :-( So, needless to say, I wasn't feeling comfortable leaving my baby with a sitter tonight especially since she was running 105 temp when we got the Urgent Care. Jason asked Kira if she wanted to go and never expected her to get EXCITED about it and seriously want to go. She asked if she could wear her earplugs and of course, that was fine. So they are off to a baseball game! I sooooooooo badly want this to be a GREAT experience for both of them...sooooo badly. Jason has always wanted to be able to take her to games but she hadn't been able to handle it when we had tried in the past.

I sent the camera............be back later to let ya know what happens!

I'm thankful.....

I'm thankful.

Today we had Eva's evaluations with Birth-3. And, just like Kira and Dylan, she qualified for services. I have to admit, I had myself pretty convinced that she WASN'T going to qualify....or maybe I was just keeping my head in the sand, who knows?? And, yes, I'm a little sad that she will need PT for awhile.

That being said, I am sooooooooo thankful that we live in a time and place where kids can get the therapy and other services that they need. It's not always easy but I look at how far Kira has come and I KNOW that she wouldn't be where she is today without the therapy, braces and other services she has received. (some we've had to fight for but that's whole different post!) I'm thankful that as a parent, I have these people to help me help my kids. I'm thankful for all the therapists, doctors and nurses who have made a difference in my children's life. I'm thankful that we have doctors who didn't give up on finding a diagnoises for Kira. I'm thankful for the therapists who never gave up and who still haven't given up on getting Kira as far as she can go with her gross motor skills. I'm thankful for the team who came to evaluate Eva today who understood why I was a little emotional at hearing that Eva is a little behind and could benefit from therapy.

And with a little therapy, I have no doubt that Eva will get kicked out of therapy, just like her big brother did!!

I'm thankful.

Time flies...and now I have to trust...

In just one short month, school will start. Up until this fall, I never gave much thought to when school started and all of that but this year is sooooooooo different for me. I can't believe that Kira will be starting school this year...not preschool but elementary school....all day. And Dylan, my Dilly Boy, will be going to preschool 2 mornings a week. I would be lying if I said that each time I walk by the school supply aisles in the stores I don't get a little sad. I love being a home with my kids. Sure there are days that I feel like I am losing my mind but I wouldn't trade my job for anything in the world. It's hard for me to think about not being there with Kira....not spending lazy mornings reading books, playing with play-doh and just being silly. It's hard for me to think about not playing an active role in her therapy sessions as I have for nearly her whole life. It's hard for me to know that she's going to be beyond exhausted when she gets home and it's going to hard to have quality time with her. It's hard for me to know that I won't be there to pick her up when she falls down, to give her a hug when she gets hurt and to give her a high-5 when she works so hard in therapy. I'm her Mommy and it's hard to let go.

I have to trust that the people who will surround her will be there to give a hug and high-5 for me. I have to trust that she WILL be okay. It's hard to let go when you've spent nearly everyday for 5 years with this adorable little person. I know that she'll love school. I know that she'll make friends. But the reality is, I also know that there are times it's going to be VERY hard for her. She has a lot of stuff going on that the other kids won't....physical challenges and anxiety being at the top of that list. Don't get me wrong. She's doing sooooo much better since we made the decision to start her on some anxiety meds but meds aren't perfect and they certainly don't make it "all better."

I worry that kids will be mean. She wears braces...that are now purple with butterflies. She'll use a wheelchair for parts of the day and she's not the "bravest" child in the world. I know that her meltdowns will happen at school and I don't want her to be called the cry-baby. I know kids are accepting at this age but I'm not blind to the fact they can also be mean.

When the weather is nice and we have our windows open, we can hear the kids playing on the playground at the school...I can't decide if that's going to be a good thing or not so good thing for me?? Hmmm...I guess time will tell.

In less than a month, I will have to put a smile on my face as we walk through the front door of the school with Kira proudly wearing her Tinkerbell backpack and carrying her Tinkerbell lunchbox. I will have to put my trust in her teachers, aide and therapists. I think it's pretty darn safe to say that even though I will be smiling on the outside, I will be fighting tears along wtih that smile. I'm excited for her to experience school and I know that she is excited too...but Mommy's heart just isn't quite ready yet and letting go is not going to be easy.

She's not going to be happy....

Tomorrow I have to take Kira to have a blood draw done....she's NOT going to be happy with me at all. I do believe there will be an icecream bribe tomorrow!

I know the minute that she sees the parking ramp at the hospital, she'll know something is up. Once we are in line with our lab sheet, she'll start asking, "Why are we doing this?" over and over and over. Then we'll have to walk around while we wait for our pager to go off...more questions while I try my hardest to distract her......

Then the pager will go off and so will Kira! :-)

Atleast I know what to expect, right????

My boy.....

He's a little climber and even when he KNOWS he shouldn't be there that little grin.....

He's a loving big brother who adores his baby sister!! (And of course, Kira too!)

And he's a little goofball!!!......I just love him!

I can't believe in less than a month my little boy will be 3 years old! He reminds me a lot my brother when he was little....like Jer, he can't WALK anywhere...we run, hop, jump but don't walk. He is so funny! He keeps us laughing every since day. I can't lie...he has a terrible temper when things don't go his way and that temper gets him in trouble from time to time but then as soon as he "fit" is over, he wants cuddles. He hates it when he knows you're upset with him. He loves to "rocka-rocka!" If there's a rocking chair around, he'll find it. We're potty training which has been an adventure but he's getting there. He's excited about starting preschool this fall...can't wait and talks about it everyday. Mommy is excited for the fun he'll have but a little sad to let go and let him go. (Dylan in preschool and Kira in kinder. this fall....Mama might be a little emotional!)

I just love my boy!!

Special needs.....

I have gotten this in many forms over the years but I love it...especially the last 2 lines.

* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)

* You fired at least 3 pediatricians and can teach your family doctor a thing or two.

* Everything is an educational opportunity instead of just having plain old fun.

* The clothes your infant wore last fall still fit her this fall.

* You view toys as “therapy”.

* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT), or throw their toys (that’s PT).

* You also don’t mind if your child goes through the house tooting on a tin whistle.

* You compare ER’s instead of grocery stores.

* You have been told you are in “denial” by at least 3 medical or therapy professionals. This makes you laugh!

* You have the incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!

* You get irritated when friends with healthy kids complain about ONE sleepless night when they’re child is ill.

* Your vocabulary consists of all the letters OT, PT, SP, ADS, VDS, IFSP, etc.

* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with…you waited 8 months to get it…and besides, no one else will be there!

* Fighting and wrestling with siblings is considered PT.

* Speech therapy occurs in the tub with a sibling.

* You discuss your child’s oxygen saturations with other moms.

* When potty training is complete, you take out a full-page public notice in the Washington Post.

* The Doctors/Specialists/Hospitals etc. all know you by your name without referring to your chart.

* You keep a daily growth chart.

* You phone all your friends when your child sits up for the first time, at age two.

* With a big smile on your face you tell a stranger that your four year old child just started walking last week.

* Her medical file is several inches thick and growing.

* You never take a new day for granted.

* You have a new belief…that angels live with us on earth.

USDF, The Advocate, October 2007

I have a child with special needs. Somedays are harder than others but in the end, I have an angel who I wouldn't trade for the world! I love my girl!

She's in there...my sweet girl is still in there!

WHEW! I think the combo of meds we have Kira on are working!!!!!!!!!!!!!!!!!! It's not perfect but I'm seeing signs that the meds are doing what they are supposed to be doing. Praise the Lord!

We did learn a very important lesson this weekend about the Risperdal that we started her one last Tuesday. We were told that it was very important that we give it at the same time each day and not forget...well, we forgot. Uh-oh! We had family in town for Eva's baptism and went to the hotel so the kids could swim. As we pulled into the parking lot, I realized that, oops, I had forgotten to give her med or atleast bring it with. Well, all was well until about 2 hours after she should have had it......she was out of control! It was terrible and thank goodness we were already on our way out the door. Lesson learned! I am buying a 2nd pill splitter this week and carrying that a couple of her pills in my purse so this will never happen again. We will increase her dose from 1x a day to 2x a day tomorrow. We are praying that it doesn't make her sleepy by giving it in the morning and at night....we don't want her sleepy during the day!

That was a big punch in the gut....

I'm sitting here tonight at 10:00 PM, feeling like I got punched in the gut today. Kira had an appt with a pulmonogist....and to be honest, I felt like it was pretty crazy that we got the referral but I went along with it because a couple of doctors had recommended it. And because of her Congential Fiber-Type Disproption, I knew it was a good idea to rule out any problems. I honestly, seriously, 120% figured we would be in the door and back out with me saying, "That was a waste of time." Guess Mommy gut was wrong on this one?

The dr was very nice but as soon as she walked in she asked if Kira always had the dark circles under her eyes? Yes. Does she wake up saying she's tired even after 10 hours or so? Yes. Has anyone every mentioned that her left ribcage is lower than her right? Ummmm, no? When she gets a cold does she always have the croup sounding cough? Yes. Does the Albuterol with the nebulizer work? No, not really? Does she snore? Yes. Does she wake up coughing? Sometimes. Tell me more about her reflux as a baby. Tell me more about her surgeries. In the back of my mind, I don't like how the appt is going at all.

Kira was a champ. She did great for the whole appt. Not one tear or anything so I guess the anxiety meds really are making a difference but let's see how good they really are working when she has to go through sleep study with freaking electrodes all over while spending the night in the hospital. Crap. The pulm is concerned that she may not be breathing deeply enough when she sleeps which can cause too much carbon dioxide to build up and not enough oxygen...or something like that. Too be honest, I was so shocked that we had "issues" I couldn't concentrate. She also wants to rule out apnea....um, folks we've walked that road when she was an infant and finding your child blue and not breathing is not something you want to relive...EVER! So we should get a call next week to schedule it and I just hope that we can get in and get it done BEFORE school starts and I'm not going to go into the "what ifs" if something does show up with the sleep study.

We also left with an Aero Chamber....and prescriptions for Flovant and Albuterol that we are to use the minute she shows signs of a cold to see if we can keep it from lasting all winter like last year. Chances are we'll end up giving Flovant to her 2x everyday all winter if it works....more junk to load her up on. I'm trying to think of the positive because I don't want her to miss school from being sick all the time and kids with CFTD get in the cycle of getting run down, getting sick, staying run down and not getting "over it" for several months. We need to avoid that if at all possible.

I think a lot of my "shock" is from the fact that not a lot is known about CFTD yet...it's new to be able to dx it and they are learning more from kids who have it everyday. Learning is good but it's also scary when your kid is the one who has the "it" that there is so much unknown about. Before we had a dx, the "unknown" was scary because you can't fight a ghost.....but even now with a dx, we're still fighting the "unknown" in a lot of ways.

Breathing issues scare the crap out me...they terrify me. And now I know sleep is going to be hard to come by because I'm going to be keeping one ear open listening for Kira...heck, I already put a monitor in her room tonight. (It's hiding because I know she wouldn't want it there!)

But for now, I need to put on my happy face for the weekend. It's Eva's baptism and we have a houseful of people coming. Distractions are good......

Relief along with feeling a little sad....

But I finally feel like someone "gets it!" I feel like someone listened to Jason and I. I feel like someone could see past what the anxiety and fear does and saw what we see...a loving 5 1/2 year old who doesn't want to be "naughty".....who doesn't want to be fearful about life....who needed someone to help. I feel hope.

I left our appointment with the behavioral ped today with tears in my eyes. Not only did Kira do amazingly well but this dr didn't make us feel like we were "doing it wrong." She didn't make us feel like WE did this but choices we made in the past. We have a plan. Kira has been on prozac for about a month now. We were seeing improvement with her anxiety but we were also seeing a lot of other behaviors that we knew were caused by the med and not things that would work to "trade" for less anxiety. There is a word for what we were seeing.....Disinhibition! Although this is not a common problem with the SSRI medications, it is very troubling to parents when it occurs. (Ummm, yeah!) Children who become "dis-inhibited" when on the SRRI meds have an "I don't care" attitude. Rules and expectations that were followed previously are now ignored. This behavior is striking when it occurs. (ummm, yeah and it freaks parents out too!)

Since we were seeing improvement in a lot of areas, we decided to not increase the dose anymore at this time but to stay on it and add another med. While I'm not crazy about adding more meds to her system, I also know that it's what she needs to function. So we are adding another med called Risperidone. Like the other, we have to start out slowly and gradually increase as needed and hope that this med will help control the "not so pleasant" behaviors we have been seeing.

We are hoping that this combination will work and we can get everything to a good dose before school starts so that hopefully, that transition will go a little more smoothly for Kira.

At the end of the day, Kira is Kira. We'll keep working to find what works for her. As her Mommy, I just want things to be easy. Isn't that what every parent wants? I would be lying if I said that I haven't been asking the "why me" and "why us?" question alot lately but I always come back to the same answer...."Why NOT me? Why NOT us?" So as we walk down yet another unknown road, I just hope and pray that we can muddle through and come out in a good place at the end. We will....I know we will.

Nervous....

You would think after all the doctor appts we have had with Kira, I wouldn't get so nervous I feel like I could sick anymore but that's EXACTLY how I feel this morning. We are walking into a whole new "territory" and I'm so stinkin' nervous. We're seeing the behavioral ped today and need some help. The current med that Kira is on seems to be helping with her anxiety (YAH!) but it has also opened up a whole new set of problems with Kira....so clearly, it's not the one that she can stay on.

Hoping for a new direction today...our whole family need it!

Eva Ruth.....

Eva has been very busy lately! We've obviously been watching her pretty close for signs of delays and/or low muscle tone. There are some concerns but each day the concerns are becoming less and less! She's been very busy lately!!!

Working hard on tummy time...and complaining a little!

She has also master rubbing all the hair off the back of her head!! ;-)

And she's a jumping machine!

It's hard to believe that my BABY is almost 5 months old! It's amazing how fast time goes with a baby in the house!

Is it Tuesday yet??

Oh my gosh! We've been slowly increasing Kira's meds to get her to the dose the dr "thinks" she should be at.....who the heck is this child? It took me a bit to realize it but the behavior "issues" we are having started with this med! I can't stop it cold turkey but man, oh, man......this is hard. I'll spare you the details but let's just say Mommy is a punching bag. This is breaking my heart to see this. Yes, I want help with the anxiety but not if it's going to be like this.

Inhale, exhale, inhale, exhale!!!

We got a referral for Kira to see a behavioral ped who will HOPEFULLY be able to help us come up with a plan to deal with Kira's anxiety. When we got the referral, her nurse told me that they were scheduling out to the very end of August and probably into September by the time I "jumped through all their hoops" to get an appt! (Okay, so those are my words!!) I felt very discouraged about that...not surprised though as we've seen enough specialists to know that it can take awhile. I got the mounds of paperwork last Thursday along with a list of all the other stuff they wanted (IEP's, pictures, etc)....I sent it back on Saturday. I was hoping to hear from them by the end of this week but was pleasantly surprised to hear from them already TODAY! OUR APPOINTMENT IS NEXT TUESDAY, JULY 21 AT 12:30!! Luckily, I was able to find a sitter for Dylan and Eva....and Jason will also be able to come with Kira and I!!!! I would be lying if said I wasn't a littel nervous about this appointment too! This is all new territory for us but I am hopeful that we will be able to get on the road to better helping Kira.

Birthday shopping done??? CHECK!!

I had a great afternoon with my friend, Jodi...shopping, soup and salad at Olive Garden and then more shopping!! We hit the Mattel Store in Middleton and found some fun stuff....Car Movie items were on sale! SCORE! Then we hit Toys R Us and the
1st thing I thought was, "Man, I wish we knew if Jer and Val were having a boy or girl!" There were so many good sales and I wanted to buy some of those cute outfits but restrained myself because you all know how it works....think they are having one, buy something and without a doubt, they'll have the opposite! :-)

Can't wait for Dylan's birthday!! We got him several items from the Imaginext Ocean. set I was bummed that they didn't have the helicopter, whale or dolphin and I can't find anywhere to order them online! What's up with that???? I think he'll really enjoy the stuff that we got though. It will still fall under the "transportation" stuff he loves but not just more cars!! :-) How is that my baby boy will be THREE in just over a month?????

It was nice to get out for an afternoon without the kidlets...doesn't happen very often these days! Jason is gone kayaking until tomorrow so that made the break even better!

I hope that you are having a great weekend too!

I have seen the power of prayer....

I have seen the power of prayer with all the people who have been praying for Kira since day one. I follow a lot of blogs, many of which are blogs for kids who are sick, very sick. If you believe in the power of prayer, please remember these families in your prayers....

Kate was just dx with an aggressive brain tumor.
http://www.caringbridge.org/visit/mcraekate

This family doesn't know how much time they have with their sweet Grayson.
http://kinseygracethompson.blogspot.com/

This sweet little guy was a victim of Shaken Baby Syndrome at the hands of his daycare provider. He's doing well but has a long road ahead of him.
http://www.noahsroad.com/

All it takes is reading some of these blogs each day for me to realize that God does work miracles.....

A Pearl Pink Zippie 2!!

Pearl Pink is her color choice!!!!!



And this is a picture of what her new chair will look like! It took a little getting used to since unlike her current chair...this one looks like an actual wheelchair. We know that this will be such a blessing for Kira to have once she starts school in fall to help with "energy conservation" getting from point a to point b. She doesn't know this but the casters that she is getting will light-up! She's going to LOVE that! It will probably be about 6 weeks before we have her chair and that's with no insurance "issues!" Keep your fingers crossed!!

"Mama, Mama! It's falling out!"

This is what Dylan was VERY loudly hollaring from the front room this morning and since we're potty train, my 1st thought was that I was going to find a not-so-fun mess to clean up....luckily I was wrong. I did, however, learn that clearly the boy needs the next size Pull-ups because he was talking about his cute little butt cheeks....yep, they were falling right out of the Pull-up! And wouldn't you know that my camera battery was dead so no cute cheeks to share. :-(

I just love this age....what they mean and what actually comes out of their cutes little mouths make for some very entertaining moments in our house!!!

We're off to the store to buy 4-5T Pull-ups....we usually do undies but Pull-ups are still a good thing from time to time!

Ch-Ch-Ch-Changes...

Kira's going to have a lot of changes coming up in the next few months...new ankle braces with pretty pink and purple butterflies that will hopefully decrease her knee and leg pain by aligning things better and a new wheelchair that will sport a pretty pink frame and light up wheels (and if insurance won't cover them, she's still getting them....gotta make it fun!) These are both changes for better but will without a doubt cause some anxiety for Miss Kira...as most change does these days. It will take some convincing on our part for her to believe that these are both for the best.

We're also changing some medications for Kira.....the medications that we are using right now are very sensitive and increases (as well as decreases) must be done slowly or things can get out of control. This change is taking the most patience on my part....I want to see results NOW but only time will tell if we are even on the right med. Patience...have patience!!

Picture of Kira getting her new braces molded coming soon....and I'm working on another fun post about my little man!!

Kira, my sweet Kira

This is my sweet girl Kira. Kira was our long awaited, many tears shed and prayers prayed for baby girl. I wanted to be a Mommy for as long as I can remember. Jason and I weren't one of the lucky couples we decide it's time to have a baby and get pregnant...we had to try. We had to see drs. He had to tell me more than once that everything was okay and we would have baby.

I found out I was pregnant on Jason's birthday and couldn't even wait for him to come home. I made him come out the parking lot at his work and handed him a bag with a bib that said "I love Daddy" on it. I didn't have the easiest pregnancy but I was willing to do whatever I needed to do to have a healthy baby. At 37 weeks, I was induced. Little did we know the road that we would travel with our precious girl. Surgeries, other medical "scares", doctor after doctor after doctor. But how could you not love this face!




We've been walking a new road with Kira and I would be lying if more than once I haven't looked at Jason, through tears, and saying, "I didn't sign up for this!" Kira is dealing some pretty significant anxiety. It's always been there but up until now, we've been able to, for the most part, "control" her world....avoid the situation that are hard for her. Keep her where she feels secure. Unfortunately, as she gets older, we can't always be there to keep her "triggers" away. We're working with our drs to figure out the best way(s) to help her handle this. We all know that starting school in the fall is going to be trigger, after trigger, after trigger for Kira. There's only so much you can ask a 5 1/2 year old to handle on her own. We haven't figured this out yet but we're getting there.

On the hard days, I have to focus on Kira, the loving big sister, the friend to others, the daughter who I love and cherish. Some days are harder than others but I will fight for my girl. I will fight for her to get the help she needs. I will fight to help her function in a world that seems really scary to her a lot of the time. As her Mommy, I will fight!

The Climb

I love music and I find that certain songs really hit home with me. The Climb by Miley Cyrus is one of those songs right now.......the words just hit home because of things that are going on in my life right now.




"My faith may be shaking, But I gotta keep trying....Gotta keep my head held high. There's always gonna be another mountain, I'm always gonna wanna make it move."

I'll keep climbing this mountain, through the tears, I'm trying hard to keep the faith right now!!!!!

Take 2....

So I decided to give it another whirl with blogging. I stopped before because I had the kids webpages and thought that was enough but I think that I'll do this blog for me. No clue where this will go but I'm going to see if I can keep it up this time. Bear with me! :-)