Take that!

Today was was one of those days that just makes a momma want to cry.

Zilla had a fabulous 1 year well visit.  Her pediatrician said she was doing great all around.  And I sat there beaming my proud momma smile.
She needs to work on gaining some more weight, which we will work on, but she is just so darn active that she burns everything off too fast.  We'll see what the next couple of months bring.
But good reports otherwise!

And then the even bigger proud momma moment came ...
Bugger played in the leaves and grass in our backyard and got up and started walking all over the place on her own!
To most parents of an almost-3-year old, this would be nothing, but in our house this is huge!
She tends to hate most things having to do with outside ... grass, leaves, sand, swings, slides, etc.
She also has had a huge struggle with gross-motor skills - I would say it has been her biggest challenge overall.  And as of late, she tends to like to walk around our living room in the evening hours mostly.  And will only walk in a different environment if it is to myself her father.
So for her to enjoy the grass and leaves was the first big smile I had.
Then to watch her get up and start walking all over the place on her own with her proud smile plastered across her face ... I could have just melted.

So I know I never share pics, and this one is blurry from my phone, but I just have to share my proud momma moment ...

So I say "Take That" to that Special Needs Monster that likes to get me down.  NOT Today!

Hey germs ... begone with you

We are generally a pretty healthy house.
Well, not this week.

All 4 of us are now suffereing from some form of a cold or sinus infection or throat infection or ... something gross.

Started with Bugger last week.  Took her to the docs and was told it was a run of the mil cold, and nothing to be done.  I know I am over-reactive parent to take her 1 day in to the sniffles and eye gunk, but I am super paranoid when it comes to her.  Children with Down Syndrome tend to have smaller sinus passages and flatter ear canals which makes drainage super hard, and also the low muscle tone effects EVERY muscle, including the lungs.  So with this knowledge, in my mind, every sniffle turns to pneumonia.  Bugger has 3 ear infections and 1 sinus infection ever, so she is not prone to the nasty ickus, but I still panic anyway.
Almost a week later, and still fighting it.  No fevers, and only irritable first thing in the morning generally or at bedtime, so we just keep up with the tylenol and wiping of the nose and hope these germs pass quickly.

Zilla started a few days later.  She has caught a far less severe version of this bug from what we can tell, but still some congestion and cough and irritability.  And did I mention the 4 molars she is cutting at the moment too?  Poor kid.  Thank the heavens for tylenol!

Hubby and I both have some forms of this as well.  His is in his sinuses and causing horrible sinus pressure headaches.  My version seems to have landed in my throat. Oh the joys of fire throat that is so swollen it hurts to swallow anything at all.

These germs can leave now.
Really.
Go!

And of course the best thing to get rid of these germs, rest, was little to be found in this house this weekend.  We had the final 2 of the 1st Birthday parties for Zilla this weekend.  I am so thankful and grateful for all that our families do for us and our kids and how much they want to spoil my kiddos.  We are truly blessed.  I just wish we had all been in better spirits and health to enjoy it all a little bit more.  Zilla chowed down on cake every chance she got, and loved every bit of it, but she also dipped out of every party a little early to seek out her comfy bed.

So today ... we rest!
Well three of us anyway.  Hubby needed to make the donuts this morning, so we sent him out of the germ infested house.  Us girls are staying in our pj's.  Bugger is staying home from school one more day, and therapy has been cancelled. Now if all of us could nap at the same time it would just be pure heaven!

Bring On the Steak (and the sleep)

I am constantly reminded how different my girls are from one another.
They are 21 months apart and best friends already, but they could not be more different.

Bugger is fair-skinned and light haired like her Irish momma.
Zilla is olive-skinned and dark haired like her Italian poppa.

Bugger is petite and generally on the small end of the growth charts.
Zilla, however generally hits the 80-90 percentiles on the same growth charts.
They are currently only 1 size apart in clothes (18m & 12m), and strangers mistake them for twins all the time.

Bugger is super cautious.
Zilla is a dare-devil.

Bugger is very laid-back.
Zilla is rowdy and rambunctious.

And now the latest ... their pain tolerance.
Bugger has most of her teeth now, and most have come with very little disturbance.
Zilla has made us aware of every moment that she is teething.  She has her 4 fronts on the top and bottom, and is now working on ALL 4 of her 1-year old molars at the same time.  Oh the joy.  Every 4 hours she lets us know its time for more tylenol.  I can not wait for them to finish coming through so we can all sleep through the night again.
She was a trooper through the first of her birthday parties this past weekend.  I hope she can muster through it this weekend again for parties # 2 & 3.

For now we all need to partake in naptime to make up for what we are missing at nigh.

The Return of the Blogger

Why do I feel like I am always returning from a lapse in blogging?
Probably because I am.
I am not good at making time to blog.
I should fix that.
Will add it to the list of things to work on ... for now, here's the updates ....

Bugger is blossoming like crazy!
She did well at her T21 Clinic annual visit.  The recommendations from the developmental pediatrician were a little easier to swallow this year than last.  We were all pretty much on the same page for the most part this year with where Bugger's development is, and she was happy to hear what we are working on and also about the 2-1/2 year old preschool program.  I voiced some concerns over sensory issues ... she feels my little Bugger may be slightly more sensitive than her peers, but didn't seem to think it was of huge concern at this point.  She however did remark on Bugger's self-directed playing, which I though was a good thing, but apparently we need to work on directed play more.
Bugger has also started a preschool program through Early Intervention.  She goes 2 mornings every week, and it takes the place of the Developmental Therapy in the home. She's in an inclusion 2 year old room. It is great for her, since she obviously does not have older siblings and this gives her the environment with peers to model after and play with and learn from.  We are 3 weeks in, and she is doing great.  She plays on the playground, which she hated prior to this.  She is even more chatty than before, and is always singing new songs ... I just wish I knew what she was singing!
And the inclusion preschool program leads in to our next hurdle ... the transition from EI to preschool through our public school system.
We are a couple weeks in to the process of transition, and I have learned more acronyms than I thought I could process, and am starting to wonder if we are sending our little girl to preschool or college!  There will be more to follow on this topic as we navigate our way through this process.

Zilla is doing her own form of blossoming too.
She, on a daily basis, makes it a goal to destroy everything in her path.
She is this close to taking steps. She will take 2-3 controlled steps between myself and her father right now, but we are convinced that she will wake up next week on her 1st birthday and will be a walker.
This little one has definitely been an eye opener for me to show me just how laid back and easy going her big sister was/is.

So in my last past I noted that the Buddy Walk was my light at the end of the tunnel.  The Buddy Walk was October 2nd, and things here have not calmed down in the least bit, and I see no calm happening until about January or so.  Speaking of the Buddy Walk ... our team had a GREAT time this year ... we had about 55 people walk as a team this year, and raised over $15,000 for research at CHOP's T21 Center.
Since then, I also pulled off a small surprise party for the hubby too ... we celebrated his 30th a month early with close family and friends.
Things are going great, hectic, but great. 
This weekend will be celebrating Zilla's 1st birthday for the 1st of 4 celebrations.
And I am not making any vows to make sure I check back again soon, since we know how my track record with this thing goes.

Lots to do & Lots of changes

We, here in our little abode, are currently kicking off a huge mess of calendar scheduling chaos.  I will be happy to be standing at the end of these two weeks.  I will be surprised to see all of the changes that come about as a result of these two weeks too.

We are looking at Bugger's annual visit to the Trisomy 21 Center at the local Children's hospital for an evaluation with the developmental pediatrician and recommendations, a tour of the preschool that Bugger may be starting at next month (as part of a special 2-1/2 year old program in the 3 year old program), discharge from outpatient speech for Bugger (which this momma is none too happy about), mixed in with some doctor appts for momma and poppa bear, and a weekend full of my home party biz. And don't forget the normal mix of therapies on the schedule.

Thankfully the light at the end of it all is our annual Buddy Walk, which we are super excited for! We walk with the other families from our playgroup to support one another. Our team is kicking butt this year in raising funds - it just makes me smile to see how much people just want to help a good cause.  The Buddy Walk that we participate in benefits that same Trisomy 21 Center I mentioned above, and the great research they do and care they provide to children with Downs.

I will try to check in during all the chaos when I can, but can't promise anything at this point.  I will definitely report back with details as soon as my brain has recovered from it all.

Tough Day Filled With Love

I intended this blog to be a little journal, or record of our little family's events, but this once I need to write about a dear friend. 

About a week and a half ago I was sitting down late one night after Hubby's family had just left from a birthday bbq we had, and I saw an email from this wonderful friend. It was not at all what I expected.  It was an email stating her son was just diagnosed with Leukemia.  Her wonderfully awesome 6 year old son, who made great strides in dealing with Aspergers last year in kindergarten, and was a completely different little boy this year that was looking forward to starting the 1st grade.  My jaw dropped.  And so did my heart.

No one ever wants to hear of a child having to go through the pain and struggles of cancer ... or any illness for that matter.  As a mom it hits very hard. As a friend to this little boy's mom it hit even harder. 

My Bugger is in a playgroup with this little boy's younger brother - who also happens to have DS, as do 5 out of 6 kids in our playgroup. We have been to this family's annual pigroast, and to the zoo and aquarium with them, and of course over each others homes for many playgroup dates.

I have seen this little man blossom and change with my own eyes.  It was amazing!

I continued to await email updates from my friend nightly on her little man's condition and to hear what the doctors planned to do to help him.  I knew it was serious, but I knew this was a strong and God-loving family, and that in the end, this would just be a memory.

Three days later I received the call I was dreading. My friend called to let me know he had lost the battle earlier that day. I had no idea what to say to her in that moment.  I just wanted to reach through the phone and squeeze her.

My heart aches for her and for the entire family.  They are such good people.  They teach all three of their children how good it is to give.  And how to be loving.  And to be accepting of everyone.  They teach the life lessons that many young kids today seem to miss out on for one reason or another.  They, as a family, are just wonderful in so many ways.

Today was the funeral.  It was rough.  But to see the church so full made me feel good  - this family will figure out how to move forward with love and support of all of those people. All of their family and friends will be there to help them keep this little boy's memory alive, to help them find the light on the dark days.

I can't even begin to imagine how my friend and her husband feel at this moment.  This is a pain that no parent should ever know. It has made me make sure I give Bugger and Zilla more hugs and squeezes. And say I Love You more to them and to the Hubby.

I apologize to any who is reading this for the sad tone, but I needed to share this.  I am learning to try not to take people and things for granted, and I hope I can share that with you.

To my friend - you are a wonderful and strong and loving and caring and awesome woman, friend, and mother.  Please remember that, and don't ever change that.

Season 2, Episode 1

Ya know when you are waiting for you favorite show to come back on after months of being forced to sit through horrible tv selections?  Yeah, I would like to think that is where we are at in my little corner of the world of blogging.

It's been a while.

A lot has gone on.

Time to regroup.

And by regroup, I mean make some changes ... i.e. try not to be so boring.


First thing, I would like to change my kiddos' names.
Not for real, but here in blogland.  I love their names and would never really change them ... besides, I think the hubs might have an issue if I did that.
For now on P1 will be Bugger, and P2 will be Zilla.
Yes, they may be strange names, but they are better than numbers I think.

So it is September, and summer is over.  It was a good summer.  We managed to get away some, which I really enjoyed.  Jersey shore for a week was awesome and relaxing, Smithville for a day was fun, and Myrtle Beach for a long weekend was too short.

But the end of summer means fun things ahead.

Bugger is 2-1/2 now (31 months actually), and we are begining to think about her 3 year old transfer from Early Intervention to Preschool and inclusion vs self-contained and if the district will evaluate her for her best interest and needs or for their own financial interest.  We shall see.  And the hubby and I are ready to advocate for her and demand whatever she needs.
We have an opportunity to get her in to an inclusion preschool program now.  I am excited to see how she does, and what this will mean for the 3 year old transition process. We are not "in" yet, but almost.  We have go for the tour and see how she and the school fit together, and then update her IFSP.  She will be going 2 days/week 9-11:30.  It's going to be strange sending my baby off to school!   But I am sure she is going to love it and do just fine.

Zilla is 10 months old now.  We're getting so close to her big birthday bash.  I am still in denial that this time has just flown by. She's getting around, and in to so much lately.  She can get anywhere she wants by either crawling or cruising the furniture, and she looks like she wants to just take off, which makes me super nervous! She is just amazing and tries to be so independent already.

I am going crazy with all the things I am involved with right now.  I am on the committee with our local Down Syndrome group for the annual fundraiser.  And of course it wouldn't be enough just to be on the committee, I am handling the ads for the program book.  And then we have our local Buddy Walk coming up on Oct 2nd.  We have formed a team to walk with Bugger's playgroup families.  I am currently in the process of tracking down shirt sizes for all of our walkers to make sure we get them in time for the walk. My home party biz is getting ready to take back off for the holiday season which means lots of craft/vendor fairs coming up as well as parties.  And the hubby and I are in the process of figuring out the massive remodels we need to do to make our house more functional for all of us.
Fun Fun!

So, we are back ... and I am making a promise to keep things more up to date ... as long as Bugger and Zilla allow me the time and fingers to type.