Thursday, December 23, 2010

Nothing better than the flu... Right before Christmas

If you are coming to the blog to see adorable pictures of Ella doing adorable baby things, just hit the little X in the upper right hand corner. There will be no pictures, there will be no snippets of all the wonderful, Susie-Homemaker Christmas things I have been doing to prepare for the jolly one's arrival. There will be no mentions of homemade wrapping paper, Christmas cards or matching pajamas for my family of 5.

It's not that I am not into Christmas, it is just that since Sunday, I have been running a fever. When I get sick, I tend to just push through it. I don't like to be sick, I don't like to spend time away from my routine. I like getting up, making coffee, vacuuming, feeding the baby, going to work, cuddling with the kids and enjoying my glass of wine once the monsters are tucked in. When I feel sick, I take some Tylenol and just keep going. That works well until you wake up, realize you have been running a fever of 103 - 104 for 2 straight days, you appear to be delusional and no amount of Tylenol is making it better. Then, you decide to go to the doctor.

BUT, I can't ever make these decisions during normal business hours, so I have to go to urgent care. Urgent care must not deal with fevers of the 104.4 variety very often (or I was that scary looking) so they refused to give me Tamiflu and forced me to the ER.

I was thankful for my friend Erin who had the duty of schlepping me to the hospital (Mike was at home dealing with another sick child and the 2 well ones). Finding out if you have the flu is the most unpleasant experience ever. With all the advances in medicine, I find it hard to believe that the only way you can find out if I have the flu is to stick a giant q tip up my nose, down my throat and leave it there for 10 seconds.  AWFUL. Best part, once it is confirmed you have it, you have to do the test again for the states records. I did have the flu, I was prescribed Tamiflu and sent on my way.

Since I got home from the hospital, I have done nothing but lay in my bed, convince myself I am dying and be miserable.  I have also thought about all the Christmas things we won't do this year and I have been praying that I feel well enough by Christmas morning to at least kiss my own children (on the hand, of course, this flu bug can last for 2 weeks or some nonsense like that) and hand out the gifts that I rushed around for the day before the flu took over my life.

Ryan also has the flu. He got Tamiflu at urgent care. They only force grown women wearing 2 sweatshirts, a hat and appearing to be homeless to the ER. He was at home all snug while I was getting my sinuses swabbed. Only problem with Ryan having the flu?  He's allergic to Tamiflu.  Something we didn't know until his nanny noticed his eye was swollen shut. Called the dr. and sure enough, it's a sign of an allergic reaction to Tamiflu.  Of course it is. The medicine was expensive, why wouldn't we have to stop taking it after 2 doses!

Today is day 5 for me and day 3 for Ryan of being sick. I am ready for my life back.

The other thing that really sucks about being sick. No one wants to be near me.  The only person that wants to be near me is my adorable daughter and due to her fragile little immune system, I haven't even been in the same room with her in 5 days.  I snuck a peek at her today and I swear she has grown 2 feet and gained 5 lbs in the last 5 days. She'll be pulling up on her own by the time I am done with my influenza quarantine.

So, there you have it. I have been stuck in my room, dreaming all sorts of crazy, fever induced dreams. Mike has been Mr. Mom, Erin took me to the ER, my mom has been sick but managed to make it to the house the one time Ryan decides to puke all over the couch and won the fun job of cleaning that mess up and my mother in law is taking care of my sister in law who is recovering from surgery (was supposed to be my job, but the dr. thought it was best if the flu patient didn't take care of the surgery patient). If Ryan wasn't keeping track of the days till Christmas on some Advent like ring thing he made himself (because Mom forgot to buy him a real Advent calendar this year - Mom of the year I sure am!) I would move Christmas back a week so we could could actually enjoy it!

I am going to get some sleep and in the AM salvage what I can to make Christmas grand still. I had big hopes for this year, being Ella's first Christmas and all... there's always her birthday..

I feel like I have to leave the blog with a picture but dont' have anything real original tonight, so here is yet another Christmas picture. I promise Ella has more than 1 outfit in her closet...

Thursday, December 16, 2010

Honey Bear Trainers, maroon spoons, SEE - oh the things we now know (kinda)!

Last night, I came home from work and Reed said to me - Mom, Ella's nose is snowing. This little sentence explains Reed to a tee. He has no concept of using correct sayings, of time, of anything that isn't inside Reedworld.  Reed loves to wrestle, eat broccoli and make messes. Reed loves his sister but can't be bothered with helping change her diaper, but ask him to sing her a song and that boy sings a mean rendition of Rudolph the Red Nosed Reindeer (with dance moves). He is the reason that I am terrified of us using sign language. 

The sign language we are learning is called Signing Exact English or SEE.  It is different than ASL - If you have heard of "baby signs" that is basically what we are doing, but we are going a little above most baby signs used and adding things that she may need as she gets into school but most babies don't use (like computer, etc). Learning SEE is tough enough. Trying to implement it into our routine when we are talking with Ella is even tougher. Imagine, I am on the phone, Ryan is throwing a football inside the house, Reed wants water, and I am getting ready to change Ella's diaper. The last thing I remember is to sign to her that it is time to change her diaper. 

Then there is the Reed factor to using SEE.  Reed is trying to learn, but the poor little boy just doesn't have any urge to sit and learn with us. I teach him how to say mommy - he signs back something that may appear to say turkey if you took it literally. We teach him sit, he turns it into two swords fighting and all the sudden I am being poked in the eye.  I am sure that if we are out somewhere and Reed starts using SEE, he will most likely offend someone by using the wrong signs. He uses the word snowing when referring to a running nose. He can not be trusted to not mix up the sign for milk and poop.. 

Other hot topics in my house these days?  Honey Bear Trainers and Maroon Spoons. Something that most parents don't know - There is an entire universe dedicated to helping kids eat and drink like their friends. I had no idea. Our new therapist asked me if we had a Honey Bear Trainer. A really big part of me wanted to say yes as to not appear behind but if she asked me to get it, I was at a loss as to where I would find a honey bear in my pantry, so I said no. She then made me feel like quite the idiot for not knowing that honey comes in these little bear shaped bottles. I then had a quick lesson all about a bottle, made for honey, shaped like a bear, that has been modified to help kids learn to drink from a straw. Who knew! I was told we need this modified honey pot by next week. I was on it! The internet gave me directions to make our own Honey Bear Trainer or how to purchase one with 2 easy clicks. I chose the 2 easy clicks option and we are now the proud owners of several bear shaped bottles with straws sticking out of their heads.  I gave one to Ella to play with and she immediatly threw it down and played with her socks.  The therapist has her work cut out for her next week...

We were also told to get a maroon spoon. Maroon spoons seems to be in hot demand as my search turned up only used ones on  If you remember, I vaccum daily so I am not really the type to buy used spoons to feed my baby with. I am on a backorder list for new maroon spoons. What is a maroon spoon? Well, it appears to be maroon and a spoon. Other than that and being 4 times more expensive than Ella's current spoons, I am not sure the purpose. When it finally gets here I'll test it out and let you know.

When I think back to my life just a year ago, I would never of guessed I would have purchased 4 bear shaped honey pots to serve as sippy cups or spent an hour searching for a maroon spoon or asked my 7 year old how you sign dog in order to tell my 4 year old to stop barking when he wants to sign the word dog. I wouldn't of imagined that when a friend gives me 3 christmas gifts for my kids, I wonder which of my boys she got 2 things for (imagine how silly I felt when I got home and realized I now have 3 kids, thus 3 gifts!).

Here is Ella with Santa. Hopefully Santa told her how he plans to finish the Christmas shopping for her procrastinating parents!

Tuesday, December 14, 2010

Sometimes, I say the wrong thing..

Going through a life changing event like having a baby born with special needs changes you.  It makes you a little more cautious to tell people "don't worry, I'm sure it's nothing".

I talked with a friend who is having a baby. Their ultrasound showed a soft marker for perhaps a genetic condition.  As he was telling me, I couldn't help but think back to my own ultrasound and being told "don't worry, we know you have a marker for Down syndrome, but everything looks totally fine". I remember people telling us not to worry, everything was going to be fine, she was going to be perfect and healthy. I remember searching google for anything I could find on Echogenic Foci and being so reassured that it was so often nothing. I remember the paper the dr. gave me explaining what an EF was and how it talked about Down syndrome and how I ignored it because well, everyone said it was going to be ok.

I am thankful for those people who told me it was all going to be OK. I am thankful for my own blissfull ignorance to what it could be, I am thankful (well, almost) for the Dr. telling us that Ella didn't have Down syndrome. Why? Because for 98% of the pregnant population, it is going to be OK and there is no reason to spend a pregnancy worrying about the off chance that we are the 2%  The minute after our level 2 US was complete, I didn't worry about Down syndrome again until 8:30 AM on February 16th.

Today, when talking with my friend, I wasn't one of those "don't worry, it is nothing" people. I was exactly the opposite of what I was thankful for during my own pregnancy. I said what came to my mind. I told him that even if it is something, it doesn't matter, you will still love that baby like every other baby. I said that it is good that he has 2 other kids so he doesn't have the "new" parent jitters. I told him that I wouldn't change my life now for anything. I told him that everyone told me it was "nothing" and well, it was "something".

After I hung up I felt awful. This poor guy. Calls to tell me about work, mentions he has a baby on the way and had a not so "perfect" ultrasound and I can't just say something like "don't worry, it happens all the time, your baby will be fine".  I have to break out my own story, my own "don't worry" predictions. I probably sent him worrying for the next 2 hours and well, for most, it is going to be OK, there isn't anything to worry about. Our story isn't the norm, but when I talk to people, I forget that. I am so passionate about how yes, the initial shock was hard, but you will survive, you will grow stronger than you ever thought. I can't help but be the other side of the coin, not for the negativity, but for people to realize that the other side of the coin isn't such a bad thing.

I leave you with my version of the other side of the coin - a little blurry because she never stops moving...

Monday, December 13, 2010

Happy Birthday to my Dad!

Time these days, it flies. So fast that I think I have 6 weeks till Christmas still and all the sudden we are at less than 2 weeks till the big day. My christmas list is still a mile long, the kids are Santa crazy and while one would think work would slow down this time of year, it hasn't. Life is one crazy mess of kids, laundry, work, cookies, therapists and well, I wouldn't change it, but I would like a day to sleep past 6 AM..

Tomorrow is my Dad's birthday.  My dad and I have a really strong relationship. He is my sounding board. He will listen (and he never interupts me, he would listen for hours if I made him) and then, he will tell me what he feels. It isn't always what I want to hear and I don't always take his advice (I'm a little strong willed) but I always take what he says and keep it with me. I like to think my dad thinks I am a good kid and is proud of me and what I have done with my life so far. I am pretty lucky to have a dad like him, even though he lives in San Diego and I am here, I know he is a phone call away whenever I need him. After having Ella, I remember thinking I didn't want to tell my Dad she had Down syndrome. I was so worried he would be sad and I don't like to make my dad sad. He wasn't sad at all. He was on the next plane to Phoenix and pretty darn amazing. He let me cry, he told me all the things he had read. He asked the right questions and held Ella and loved her like any grandpa loves their granddaughter, and since the day he first met my little Ella, she has had him wrapped around her little finger.Happy Birthday Daddy! I love you!

Ella had a goal to reach by Christmas.  She had to be sitting, not getting into sitting on her own, but when placed into a sitting position, it was important that she be able to stay.  Well, Ms. Ella has been sitting since Thanksgiving! Our next goal is crawling or at least getting on her knees and rocking. 

Have I mentioned that encountering other moms with babies Ella's age is quite the experience these days? They will say things like - "is she crawling" or other totally appropriate questions given her age and I am faced with this dilemma of what to say to them.  Normally it is not someone I know, so I don't really think it is appropriate to go into Ella's life history right there at Target, nor do I think I want to catch this poor parent off guard, but I also don't want them to think I am an evil parent who never lets her out of her crib, thus her lack of crawling abilities.  I have perfected a smile nod thing and I am thankful I have a 4 year old who normally can't go more than 1 minute without hurting himself, getting lost or breaking something to use as my distraction. It isn't that I mind telling people Ella has Down syndrome, but I don't really want to get into it with the waitress at Outback, so for now, we smile and nod.

I would leave you with a picture of Ella, but of course, I don't have any on this computer. Next time! I promise, although I learned to not promise when next time is..  :)

Wednesday, November 3, 2010

Whoo Hoo - I made it 3 days!!!

Yeah, I didn't really live up to that challenge, now did I?  I instead went the other direction and decided to just not post for 28 days.  See, I can do something!

I have spent the last 28 days in a blur. A blur of family visiting, 11 year wedding anniversary celebrating, baby play dates, football, Halloween parties, crazy work, behavior unbecoming to children, new assistants that rock, Brazilian blow outs, boats, babies that army crawl, buddy walks, more Halloween parties, new cars, Thanksgiving drama. See. I am one busy chick.

One busy chick with some awesome hair.

I know, 28 days away from the blog and you would think I would talk about Ella. Well, I will, but more importantly, I have found the worlds most awesome thing ever. The Brazilian blow out.  It is amazing for those of us with frizzy, curly hair.  It makes your hair smooth, straight, flat, just amazing. These darn celebrities who have known about this treatment for years were hiding it because they didn't want us normal people to have hair better than theirs.  Well Jennifer Aniston, I now have nice hair and a husband.. Looks like only one of us is 2/2. Oh, if you google the BBO (as those of us in the "club") call it, ignore those formaldehyde comments, I am sure it is safe, I mean, have you seen my pretty hair? How couldn't it be??

I have pretty hair that lasted through 2 weeks of Halloween nonsense.  I like Halloween, I really do, but it seriously stretched out for 2 weeks. Between block parties, parties at the clubhouse, school parties and the actual night of trick or treating, I am so sick of seeing vampire teeth and tootsie rolls I could scream.  When did Halloween turn into a month long ordeal that involves costume parades and frosting cookies? When I was a kid we just had Halloween day. That was it. Just one day. We trick or treated, we went home, we ate some candy, washed the makeup off our faces and went to bed. Now my children think Halloween is a 2 week event. I can't wait for Christmas this year!

Before I spent two weeks in costume hell, I got to spend time with some of my favorite people in the world, Mike's aunts and cousins from New York.  They all came down for a week of non-stop fun and well, fun we had - non stop..  It was a crazy week that ended in Mike and I staring at a wall and recuperating the day after they left, but we had a blast. They got to meet Ella, I got to take some time off work and hang out. It was all good. 

I also spent a good part of the last month really focusing on what we want for Ella.  The state has made some changes to the program she is in (her early intervention therapies) and we have been tasked with the tough task of learning we will be footing the bill for all of her therapy from November 1st on.  While I am thankful that right now we can afford that, I get frustrated that my tax dollars do nothing to help my own family!  I can't change it though so we are at a point of deciding what we want for Ella and what we can afford. Our insurance covers some things, but the only therapist I care about keeping isn't covered by our insurance.  I won't give her up though, so I am keeping PT once a week and really researching a clinic type setting for OT and Speech.  I have spent way to many hours on the Internet reading research about therapy and what others think of what works / what doesn't and I am leaning towards Ella going to a clinical setting 2 or 3 times a week for more speech and OT than she gets now.  I am learning the clinics around here aren't really set up for babies, but I am pushing them to see if I can get a clinic to take a chance on us.  In the future Ella will need more from a speech therapist than 1 hour a week, so why not start now?

I also had an anniversary (my amazing husband deserves a whole post related to our anniversary) and I had an assistant quit and another one start in my Crazy October.  Old assistant...Well, let's just say he Facebook un-friended me and I wasn't sad about it.  New assistant... Well, let's just say she is my clone. A mini me. (really, a mini me, she is much smaller than I am) and she is full of ideas, sarcasm, great jeans, hard work and candy. It's awesome. It's like me but with 3 less kids. Erin's new assistant is a lot like Erin and while not so full of candy as my dear assistant, she is full of baseball trivia, cute shoes and patience so it is all a great balance around the office right now. Cute shoes, cute jeans, ideas, patience. What more could we want!  I like it. We are setting out to accomplish some amazing stuff in 2011.  Erin and I are blessed with the smarts and guts to have made it this far, now we have the team to help us be amazing and world overtaking.

OK, OK, now on to why you actually read the blog.
Ella is doing amazing. I can't say enough about how wonderful she is, how great she is doing, how she makes everything in my life better, you get the picture.  She is starting to wave, starting to army crawl, starting to get mad when her brothers take her toys, starting to sit up better. She is just being Ella and smiling and loving every day she gets to get up and roll around with her toys.  I love it. I love her.   She did awesome at the Buddy Walk, she did awesome at her baby play date.  See, I can't spend 31 days writing about Ella, all I would say is how wonderful she is and well, it would get a little tiring after a while, I get it...  :)

What else... My other two children....

Let's just say that for every amazing baby with chubby cheeks, there is a Storm Trooper and Vampire waiting in the wings to bring you back to parenting reality.  If I didn't know better, I would think that my dear boys were sent here to test every ounce of patience I have before I turn 31.  I know they are saving something for when they are 14 and I am 33 so I am assuming it was just a tough month for Storm Troopers and Vampires.  A month full of teacher visits, phone calls, time outs, bite marks and no X Box.

So much else has happened, but well, I must get my pretty little hair to bed.  Till next time my friends! Oh, and by next time, I don't mean 28 days, I mean just a few!


Monday, October 4, 2010

Did you really just write that?

I know, I didn't blog yesterday.  Day 3 and I already couldn't do it...  BUT... I have a good reason. It was Sunday.  Sunday is football, kids, hanging out, relaxing and cramming all the homework, laundry, house cleaning I didn't get done on Saturday - day.. Let me tell you, I have a lot of procrastinating I have to make up for on Sundays.

Just when I thought I wouldn't have a single thing to say in my blog, I get a comment on my facebook wall about my blog that inspires me to post.  I love comments, usually they are uplifting or thought provoking.  This one? It was - very uncalled for -.

Without posting the entire rambling wall post, I can tell you it said that my blog was "such a sad story" and that if I researched vitamins and minerals a little more, I could be like a mom on You Tube who "began making a shake type mix every morning with all of the Vitamins/minerals she had researched and fed it to her child" and that "Within 9 months it was truly amazing how the child's entire face looked so different (more normal of course)."

Umm, excuse me, did you just post on Facebook that I could give my child a shake to make her face look more normal? More normal? Does that seem appropriate?  No, sure doesn't. 

First thought that went through my head - This person must have no children.  No human being on earth who has children would ever tell another parent how to make their child's face more normal looking.   Most people without children wouldn't say it either, but if your child is your pet cat, I am assuming you have more leeway when talking to other cat moms about how your cat kids look..  You don't have that same leeway with mothers of human children.  We don't take kindly to advice on how to make their faces more normal.  Down syndrome or no syndrome, us parents tend to think our kids faces are normal and if we don't think they are, the last thing we want is some facebook friend schilling out advice on a miracle shake to fix their odd looking heads.

My second thought after her post - Ella would be so mad if she could read...
Ella's mad face

Third thought - F- you and your normal looking cat children.

Fourth thought - She must be drunk (the post was pretty rambling and she didn't even realize the blog was about me and my family)

Fifth thought - I should really respond to her and let her know that the post wasn't cool.  We don't say those things about kids (or adults) because it isn't necessary. If you want to peddle your holistic medicine beliefs, go ahead but leave out the rude assumptions that I would be doing it to change the way my daughter looks.

So, I did respond and guess what, she immediately removed the post.  I personally would have preferred the post stayed as I would of loved all of our mutual friends to see what a crazy, insensitive post it was, but in Facebook world we have the option of undoing our doings, so... It is gone. Gone from Facebook is one thing, gone from my mind, that's another.

Let's see if she ever gets through the doors of my office again.....

On another note, today my assistant gave his 2 week notice.  I am happy for him, he is going off to pursue his dream career in music and ministry.  I am now though back in the one place I don't like to be, interviewing.  If you or anyone you know is looking to work for 2 very smart chicks let me know. :)

k - have to go. Tomorrow I want to post a link I found to a really cool Ballet studio in Boston and another link about a young man with Down syndrome holding down a pretty awesome job. 

Till tomorrow friends, till tomorrow.

Saturday, October 2, 2010

Welcome back ear infections!

I had a blissful 9 months without you. No runny noses, no eyes full of puss, no hearing issues, no fevers, no sleepless nights.  You just couldn't stay away though, could you? You figured since Reed finally got tubes in his ears and Ryan was too old to bother with, you would plant yourself in my little girl's ears and not go away.  I don't like you and this time, I will rid ourselves of you much quicker!

Do I sound mean? I hope so! Poor Ella is now under the spell of the ear infection bug that bit Reed and wouldn't go away until we got tubes in his ears. I think we are heading down the same path with her. This time though I will not wait 3 years (not my idea to wait, his doctor didn't think he needed tubes, we switched doctors and he recommended tubes ASAP) I will do it the minute her doctor tells us we need it. I don't want to sacrifice one minute of her hearing because of ear infections.  I have seen what waiting has done to Reed's speech and I don't want to put Ella through that. So, tubes may be in our immediate future for her.

For now though we have one sick little girl.  Double ear infection and just overall not a happy camper.  Normally when a kid is sick, it isn't a huge deal, they lay on the couch, sleep a lot and get better in a few days.  The problem with Ella is that she gets so sick that we have a week of miserable Ella. That means she won't cooperate with her therapy (she has mastered the pouty lip and sad face to get out of therapy), she won't eat, she throws up (I would like to give a big shout out to myself for catching an entire stomach full of throw up in one bib, not a drop anywhere else, I am a master thank you very much) she is just so pitiful you want to cry for her!

The other annoying thing about ear infections.  They show themselves at midnight on a Friday. Yep. We can't wait till Monday to see her normal dr. so here I am schlepping Ella to the Urgent Care first thing Saturday AM (and missing Reed's football game - it's always a trade off isn't it) to get more antibiotics.  Then, I get to go home and wrestle Princess Determined to get her to take the antibiotic. I love the weekends! Did I mention the Urgent Care took 2 hours? Did I mention that Ella decided to take that 2 hour time frame to excercise her vocal cords the entire time? Did I mention that I hate ear infections?

Ms. Ella is now napping, Reed is reliving his football game for me and I swear I smell Fall in the air. I must go enjoy the moment!

Friday, October 1, 2010

For day one..

I told Ella that today was the start of Down syndrome Awareness Month. She didn't seem to care.
Just kept sleeping away.

Since I am going to be blogging for 31 days, I am going to go all boring on you guys and make this one an update. We have to start somewhere and I figured that since I have been missing for a few weeks, we should get all caught up. Here it goes:
Ella – Well, Ella isn’t laughing. She gets really close to laughing, she smiles, sucks in her stomach like a giant laugh is going to come out and then – nothing - . I know that she will laugh in her own time, but I want her to laugh now! I want to hear her cute little belly laugh and hear her make little squeals to go along with how excited she gets at things. She is also really mobile. She rolls all over the place, reaching for toys, pivoting to change directions, she is only happy if she has free reign of the floor. She has no interest in sitting up though, none at all. I think since she is such a mobile baby (she is already getting in a crawling stance) she sees no reason to practice sitting up. Her PT and I are diligently working at getting her core muscles stronger so sitting will happen one day, but for now, she is happy with getting from point A to B by rolling.
She is also an eating machine. She loves her baby food. 3 times a day and she eats an entire 3.5 ounce package each time. We are feeding her Ella’s Kitchen Organic baby food. It started out as something cute because it had the same name as her and now it is all she will eat. Good that it is organic, bad because organic baby food is expensive. I think we spend more on her food and formula each week than the two boys put together!

We found a new occupational therapist and all is going well so far. She is nice and knowledgeable and Ella seemed to smile at her, so that is good. Her PT and Speech Therapist are also doing great. I love the team Ella has helping her. I do sometimes dream of a day where we don’t have anyone coming into the house and I can just relax and not vacuum and not be out of bed by 5:00 AM, I can dream, right?
Other than our little girl not wanting to give up any laughs, she is doing great. I stay far away from milestone charts. Ella has a wonderful team helping her achieve her milestones and when she does them isn’t important. She will do them.
Reed – Oh Reed… We learned over the last week that Reed isn’t the friendliest kid in his class. This was a little shocking as he is by far the most outgoing of all of us. He likes to make friends and play with others, or so we thought. His teacher was wondering why he was always alone and the kids would leave the table he was at. She decided to kneel behind him during play time and heard him whispering “Go away”, “don’t touch that”, etc. under his breath if a kid walked up to play with him. Awesome. Not only is our kid being mean, but he found a super creepy way to do it! We talked with him and while I hope we got through to him, I am not so sure. His reasons for doing it? He just wants to be friends with Ryan so there is no reason to talk to the kids in his class and he didn’t want to be loud about it so he whispers.

Ryan – I didn’t have much to post about Ryan until I received an email from his teacher this afternoon. To paraphrase her email –“Ryan got in a food fight at lunch. The cafeteria workers were not happy at all.” I can’t wait to hear about this when I get home tonight. This is not like Ryan at all! I am not happy with him, but a little part of me is glad he knows how to break out of his grown up shell sometimes and be a kid (don't tell him I said that though!)

So… That catches you up on the kids. See you all tomorrow!

Thursday, September 30, 2010

October is...

Cooler weather
Fall break for the boys
Columbus Day
Down Syndrome Awareness Month

Oh, wait, were you shocked by the fact that I was actually posting and didn't read the list above? (I know, 2 1/2 weeks without a post is a long time in blogging world) Let me repeat the list...

October is:

Down Syndrome Awareness Month

Yes, I think that out of the entire list, the only thing that really matters is that Ella Bella has an entire month dedicated to raising awareness for Down syndrome. That rocks.  We need more awareness. Not just for the general public but for us, her family as well. Here in Ella Bella world, we get so caught up in how adorable she is, we tend to forget that we need to focus on our sign language lessons with her, our reading on her development, our commitment to the Down syndrome community. October is her month. October is my month to get my goals on track.

I also decided that I am committing to 31 for 21. 31 days of blogging for Trisomy 21.  I am going to do it. I am not alone, there are lots of great parents who are doing it and well, I am sure you all can't wait to see what I have to blog about for 31 days straight.  On day 20, you might read about what I made for dinner and who I flipped off while driving, but this 31 for 21 thing is a real mission that has been going on for many years and I want to be part of it, so starting tomorrow, it's on.

I had a really good blog for tonight, but like any good business person, I need to make sure I deliver on my 31 for 21 pledge, so I will see you tomorrow on day 1 with my really good post! :)

Share my blog, let people know that for the next 31 days I will be posting everyday. Tell them that Ella is cute. :)


Monday, September 13, 2010

Semantics matter to some...

I almost didn't post this one...

In the past 6 months I have met people and read blogs about others who have children with Down syndrome.  Some of them are people I would be friends with even if our kids didn't share an extra chromosome. Some of them I wouldn't be friends with even though our kids share an extra chromosome. What I have discovered is this...

Semantics really matter to some people.

The term "semantics" refers to linguistics and the meaning, form, and interpretation of words, signs, sentences, etc.
People most often use phrases like, "Let's not argue over semantics." This usually means that the general meaning (of a word, phrase, sentence, subject, etc.) has been addressed, and the conversation has stalled on small points that have no bearing on the overall/main subject matter.

I am finding that no matter how I say "Ella has Down syndrome" I am making someone angry.  It is always someone who:

1. Doesn't know me or my family
2. Doesn't know Ella

These someones email you in the middle of the night telling you how you are wrong to call it Down syndrome, there are new names for it that don't use the word "Down". These someones post on your facebook wall that you are bad for calling it special needs, it is special abilities. These someones tell you that if you put the Down syndrome before the noun (baby, Ella, cutie pie, etc) you are defining the child and therefore, ruining its life. These someones make you feel like you pretty much suck at dealing with a child with special needs even when you think you are doing A-OK.

These people try to pass their comments off as advice or help from someone who has been there / done that, but really, it comes across as "if you don't agree with my way of thinking, then you are stupid and ruining your child".  In their minds, there is no room for my way of thinking or my feelings. I don't like this. I take everything I read, everything I am told, everything I hear, into consideration. I might not agree with your view point, but I don't think you are wrong for thinking it. I just need to find my own path and follow the ways that make sense for my family.  Why is that bad? Who are they to judge us, or anyone for that matter?

This is how my mind works..  Good or bad, it is how I feel about my situation..

I don't get why they want to change the name of what Ella was born with.  Why can't we call it Down syndrome? When we go to the dr. or meet a therapist, they call it Down syndrome. As Ella grows up, her peers, her teachers, the school bullies, they will all call it Down syndrome.  They won't change the name to make her feel better about it, they won't sugar coat it. She needs to be able to respond in an appropriate way. She can call it whatever she wants, but she needs to know what others will call it and why it is called that.  Ella will learn, as she gets older, that it is called Down syndrome after the name of a person, not after a defining trait of the syndrome.  She will be empowered to teach people, in her own way, about her extra chromosomes. It doesn't matter if we change the name, it still is what it is. 

Ella also has special needs.  You can disagree all you want, but she has special needs, not special abilities.  She is not Superwoman, she can not see through walls or leap buildings in a single bound. Those would be special abilities. In fact, none of my kids have special abilities. I don't either. Some children excel in one thing over another, but in the grand scheme of things, the only people with special abilities are superheros.  Why can't Ella have special needs?  Is it the word special that throws people off?  If so, we should call it different needs, but we should keep the word needs.  We all have needs, some of us just don't have needs that far off from the needs of the general public, but some of us need a little more than the general public, and guess what, I am happy that we have systems in place to address that. I am glad that her special needs mean she gets therapy and extra help when she is in school. Letting the world know Ella has special needs means the world can help Ella with her special needs. If someone takes the words "special needs" and turns that into something bad, then I will educate them why it isn't bad, just different. If they choose to not listen, they aren't worth our time anyways and no matter what I called it, they weren't open to hearing it.

I didn't accept Ella having Down syndrome for the first 24 hours of her life.  I convinced myself they were all wrong and I would wake up the next day and next to me would be my dr. She would apologize for the wrong diagnosis, ask how I was feeling and go about her rounds.  That didn't happen.  Hour 25 brought a social worker and signing up for state programs to help Ella.  At that moment, I accepted Down syndrome and her special needs. I accepted all of it just as it was, no special names, no sugar coating the road ahead for all of us. I had to accept it to make sure everyone around me accepted it.  If I call it something different, aren't I showing Ella and everyone else that I don't accept it as it is? I don't have to like it, there are days I hate it. There are days I want a different life for Ella, but I accept the life we were given.  Shoot, there are days I want a different life for me, or my boys, or anyone going through a tough time, but I accept that it is what it is, no matter how we try to dress it up. How we react to what we are given is what matters, not what we call it.

OK. Off my soap box. 

Here is a pic of my special baby..  :)

Monday, August 30, 2010

Just another manic monday...

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”- unknown

I took this quote from a Facebook friend who had posted it.  I feel like this quote is the best way to describe me and the last 6 months of my life. When I had Ella, I think everyone would have found it totally normal for me to go into my room, turn off the lights and not emerge for a month. I bet Mike and my mom would have brought me food at regular intervals and my dad would have sent me books to pass the time. Erin would have done all of my work for me and my sister in law would of brought me Chipolte and vodka whenever I asked for it.   No one would have thought it was odd that I was hiding from reality. They would have given me my time and said nice things to me and patted my head and secretly talked to one another about how to fix me.  As much as a months reprieve from reality would have been nice (I mean, no work, vodka and books on demand, what more could I want??) I stayed strong so those around me would know the game plan and would follow suit. I need strength from my inner circle, not only because of Ella but because we lead a crazy busy life and I need everyone to know that their leader is strong and they should be too.  We don't have time in this family for "poor me". We deal with the hand we are dealt and we wake up each morning knowing the day is what we make of it.  Sure, sometimes I feel sad, but I allow those feelings like I allow myself fattening desserts. Only on rare occasions and only if I have the time to truly experience the feeling. Not worth the time or the calories otherwise!

I don't really have anything else "insightful" to post. I am to tired to be insightful. We just wrapped up a crazy two weeks of moving our office to a new location (it rocks), taking a ton of new listings, starting homework routines and yelling at Reed for rolling the baby up in his carpet, so really, I have no mind capacity for insightfullness right now.

Oh, you were reading the last paragraph...  Yes, I did say yelling at Reed for rolling the baby up in his carpet.  Right.  The nanny called me on Friday at work. She was livid. I love when Roxie is livid. The accent just makes me think of Mary Poppins and well, I tend to lose focus on why she is mad and focus more on perfecting my own accent to use in such cases. Anyways, she was angry with Reed.  It seems that they were all playing in Reed's room and Roxie stepped out to take a phone call. When she came back Ella was rolled up in Reed's carpet like a burrito.  Now, normally, I would be angry with Reed for this, but Roxie caught me right in the middle of our office move, I hadn't slept all week, I was stressed, etc.. So, when I heard her say Reed rolled Ella up in the carpet, I started laughing. I couldn't stop. Dear Roxie thought I was crying and then tried to console me, which made me laugh more. She then put me on speaker phone and asked me to talk to Reed about his actions.  It went like this:  "Reed, you are NOT ALLOWED to roll your sister up in your carpet". I then stopped because I was crying it was so funny. Everyone in my office was laughing. Roxie wasn't.  (Disclaimer: Ella was totally fine and not fazed at all, wasn't even crying).  I then asked Reed why he did it.  His response: "Ella scratched me and I didn't want her to be able to use her arms to do it again.". I was really proud of Reed for using some form of cause and effect in the situation.  Normally Reed doesn't do a lot of thinking other than wondering what type of cereal he is having for breakfast or if his cheetah came in from outside for the night, so to hear him say something that took a little more thought, it made me happy. We did have a talk about not making his sister a baby burrito and that it could of hurt her to do that, but, in the end, Ella was OK, I got to let out a little stress and I gave everyone in the office a reason to laugh...

Did I mention Ella started OT? She did. The therapist was 20 minutes late. Not a good start. Even better, she didn't show the next week.  No call, nothing. I get a call from another OT who told me the therapist we had coming to the home shut down her business and isn't allowed to see patients anymore.  I don't know the details and I am just thankful Ella didn't bond with her and then this happened. I am pretty pissed though. This woman had to know that she was going to be shutting her business and could have given us a heads up.  Ella needs OT and deserves OT and now we have to start over in our search for a therapist.  It delays her right to have the therapy and her development and well, if I was to see this lady again, I am pretty sure I would tell her where she could stick her feathers.  The other thing that sucks... There is an OT shortage in the valley so I literally can't find a new one. I am on a waiting list for 2 OT's and still making emails and calls daily to find someone. I get that some people are flaky, but when your job involves helping special needs children and they depend on you to help them develop, grow up and do your job.  GRRRR. 

Despite not having OT, my Ella Bella is doing pretty awesome. She is interested in eating, chewing on her hands, blowing raspberries and yelling into her mirror.  She refuses to laugh. REFUSES. I have decided that it has nothing to do with her delays and has everything to do with her taking after me. It takes a lot to make me laugh, so naturally, Ella would be the same way, right?  I pretty much only laugh when I get to sing Karaoke or I watch the Golden Girls on TV (yes, I liked Betty White way before she was so hip), so she'll get there... Right???

She also has no interest in sitting up. I work with her every day and she just doesn't have the muscle tone yet. She is trying, trying, trying, but if she also takes after me in the muscle tone department, it could be a while before we see her abs toned enough to hold her up. I mean, I can't wave good bye without my arms continuing the wave for a good 3 minutes after I stop waving.  Poor girl, she is destined to never laugh and have floppy arms. At least when the boys do something I can blame it on Mike. Like when Reed throws like a girl or Ryan is scared of a spider, I totally know that is from their dad's side.  Makes me feel better.

There are so many other things going on, I could go on all night, but I wake up at 5:00 to work my floppy arms and I am tired. Ella is asleep and so is the rest of my family.  Till next time my friends....

Wednesday, August 18, 2010

Raspberries, Payson and a birthday..

I have noticed a few new readers to my little blog.  Ella says hi to you all!

Ella has a new - pretty awesome - trick.  Blowing raspberries.  2 months ago her Dr. asked if she could do this yet and I was so sad that she couldn't.  I don't know what I was thinking, I kinda wish she still couldn't.  Why? Because it's embarrassing..  Imagine being in line at the grocery store, or shopping at Target and all of the sudden everyone around you hears "pfffff". It doesn't sound a thing like blowing a raspberry. It sounds like she is passing gas.  Totally cute if you know the truth, but not cute when the people around you look at you like your the one making the sound.  I find myself saying really loud "Oh Ella, you sound so cute when you blow raspberries" a lot these days.  I also find myself unable to tell if one of the boys is being gross or if it's Ella when we are driving around and all of them are in the back of the car.  Trust me, it isn't always Ella....

This weekend we went to Payson and I learned Ella is a wonderful travelling companion.  She doesn't fall down cliffs (Reed), she doesn't bite her own finger and make it bleed when eating french fries (Reed), she doesn't mistake the word Elk for Elf in a conversation and spend the next 30 minutes crying, covering her eyes, convinced there are creepy elves with antlers roaming around the woods (Reed). She also doesn't complain about not catching a fish (Ryan) or only eat pancakes that are fluffy (Ryan).  She is the perfect little traveler. She lets me tote her around in her Baby Bjorn, she eats where ever we are at the moment, she sleeps all night without stealing covers and she doesn't even want me to put a worm on a hook for her to fish. 

I know.. I am not supposed to play favorites, but hey, I need to remember these sweet, easy baby days and store them in my mind for when she is a toddler running around and getting into everything!

In all honesty though, the trip to Payson was a blast. The boys were on their best behavior and we had a lot of fun.  I do sometimes wonder what planet Reed comes from, but we had a good time..

We came home just in time to celebrate my grandma's 89th birthday. It was a nice night for her and the women who take care of her in her care home went way above and beyond decorating and making her day really special.  I don't know how many more birthdays we will get to celebrate with her, so it was nice to be able to capture pictures like this:

We all had a great time and it meant a lot to my grandma to have us all there eating cake with her.  Happy Birthday Grandma!

I wish I had something exciting or meaningful or insightful to post, but really, life has been out of control busy but also very calm.  No crying fits, no sentimental moods, nothing but work, kids, therapy sessions, vacuuming and laundry.

Tomorrow we start occupational therapy. The therapist is the one I like to call "feather lady". I am sure that will lead to a post of some sort. Till then, goodnight my friends!

Wednesday, August 11, 2010

Daughtry to the rescue again...

Last night I cried.. 

Why did I cry? Someone asked my nanny if Ella had Down syndrome. To be fair, the person that asked has a 4 year old with Down syndrome and may have been tipped off by the preschool teacher that one of the kids in the class (Reed) has a baby sister with Down syndrome, but nonetheless, her asking made me cry. I know, I am most likely over-reacting as this woman is probably tuned in to what Down syndrome babies look like because she has been there and done that and she was probably so excited to meet Ella and share her knowledge with us, but for some reason it made me sad that she walked right up to Roxie and asked if Ella had Down syndrome.

I think I have done a good job adapting to our new life. I get that Ella has Down syndrome, I get that she may live with us or live only semi-independently for the rest of her life, I get that she won't be President and she probably won't drive a car. I think what made me cry was thinking that other people might know all this about her already by just looking at her. I don't want people to look at her and because she looks a little different discount her, her feelings, her abilities. I want them to give her the same chance they would give anyone else and well, the truth is, this might not always happen.  I don't think that the woman at preschool falls into this category at all and I don't think this is what she was doing, but hearing Roxie tell the story made me think about what we will be dealing with for the rest of our lives. People who automatically assume Ella isn't as "good" as them because she doesn't look like them.

Writing about it now, it seems so silly, I took one comment about Ella's day from Roxie and made it into something so much bigger, but hey, I can't help my feelings and I was already tired last night and so... I cried..  The best part... as I was crying my song (Daughtry's Life After You for those of you new to the blog) came on. Like someone out there was slapping me in the face as I was crying telling me to get over it and get on with cooking dinner.

Enough with that, she has Down syndrome, She is adorable and she rocks at sitting in her high chair and eating solids so....

Let's move on... Yes, I said she rocks at eating solids. Tonight was the first night we tried it. We have been waiting as she is a wee bit behind in the sitting up thing and I didn't want to rush it until her head control was better, so we waited until now and well, she did wonderful!!! We gave her rice cereal and she ate the entire bowl. Let me tell you, this little girl had a blast. She would get so excited when the spoon was close to her mouth that she would shake.  I loved feeding her and I loved how into it the whole family was. Ryan was by her side the whole time encouraging her and wiping her face and Mike was taking pictures and Reed was talking about Cheetahs (4 out of 5 of us isn't bad...) and it just felt so awesome.  Everything she does is so much more important to me because I know she has to really work at it.  I was excited when the boys ate solids for the first time but it was more of a "oh, look how cute Ryan is when he has rice cereal all over him, and me and the floor". With Ella you are excited because you know it is hard for her little muscles and her tongue to all work together but she keeps trying and by the end, I swear she was a pro. I was a proud momma tonight.

We are working really hard on getting her to laugh and sit up and use her arms more.  She can laugh, I know she can, but she just chooses to show us her giggles with big smiles instead. The sitting up thing... Well, Ms. Ella needs some more strength in those ab muscles. She is a bit wobbly but we are working on it.  I know I talk about her therapists all the time, but honestly, Tess has been the biggest blessing to us. She knows how to work with Ella to really make her "work out" without angering her and she is positive but realistic. 3 months ago I really didn't get why you start therapies so early, but now, I get it.

OK, off to bed. Mike and I realized that we won't ever be skinny again by just sitting on the couch so we are waking up early to work out. I wish I could do the boot camp thing but there isn't time in the morning with Ella's therapies starting so early (we had to move them even earlier in the morning to make sure we could get Mr. Cheetah and Ryan to school on time) so I will be in front of my TV tomorrow at 5:00 AM watching Denise Austin tell me my buns are great but she can make them fabulous. Good night!

Tuesday, August 3, 2010

A blog about a little bit of everything...

My life has been so crazy busy lately that I am not always sure what side is up..  Between launching a new company (Welcome to the world RE/MAX Mosaic Properties!), raising 3 kids who have the longest Summer break ever, waking up at the crack of dawn to be ready for Ella's therapies, a new nanny and doing laundry, I don't even have time for a glass of wine or reading People these days!

Ella had her evaluation with the Occupational Therapist.  She was a little odd (and showed up 10 minutes late...). She asked me questions (and expected a serious answer) like: Does Ella like it when you rub her face with a feather? Now, I get the point of occupational therapy, it is for sensory integration, helping with tasks of daily living, etc, but Ella is 5 months old. Do you think I have plucked a feather out of a pigeon in the backyard and rubbed her face with it? I haven't.  She didn't seem pleased that I didn't know how Ella reacted to feathers. I asked her if she had one we could test out and she didn't.  If the feather test is so important, bring your own damn feather. She also wanted to know if Ella has issues with tags or seams.  She doesn't, but it got me realizing that the rest of my family might need some occupational therapy. Mike has  issues with tags and seams and has passed that down to the rest of the children (Ella takes after me so she is pretty much perfect). You should see Mike, Ryan and Reed putting on shoes and socks. It's like a 10 minute ordeal to line the seams up right so you don't feel them when the shoe is on. I told the therapist Ella was OK with seams, but if she had any tips for a 31 year old I would be happy to hear them.  She was not amused....  I guess the good thing is that Ella  needed OT so we add another therapist to the vacuuming rotation. Yes, I said it was a good thing she needs OT.  I know it sounds odd that it is a good thing to need therapy, but I want Ella to get all the extra help she can so as she gets older she might be able to master skills faster than if she didn't have extra help. I worried about her not getting OT for a month and I am so happy the eval is done and she qualifies! I will let you all know how she reacts to feathers.

Ella has a new trick. She learned how to click her tongue and she has started doing it at the most odd times. Like ALL night. I already don't sleep as I am terrified she will stop breathing (no medical issues, I'm just neurotic) so now on top of waking up to check her breathing, I am woken up to a sound that sounds like my 5 month old is chewing on something. Last night I jumped out of bed because I thought she was chewing. She was sound asleep clicking her tongue. I am a little annoyed by yet another reason not to sleep, but ecstatic that she is doing it.  This is a big step in language development and since that can come much slower for Down syndrome babies, the fact that she has the tongue strength to click it is awesome.  She is in her bassinet clicking away right now.

I have been fortunate to meet with a few moms of babies with Down syndrome in the past few weeks. Nothing makes my heart happier than seeing these adorable babies and sharing stories with their parents. I am really trying to figure out a way to make a network somehow to reach out to these parents on a more organized level. I don't know how yet, but I feel strongly about my want to be there for them and share and cry and laugh together. Not to knock what is in place, they are a great resource and have great support, but I dunno, I want a different vibe than what I have found so far.

We have had our new nanny for about a month now. This is her second week working on her own. She is awesome beyond words. She organized Ella's room so perfectly that I wanted to cry when she showed me. She just comes in and jumps into whatever the kids need and still finds time to do laundry for the kids, make them clean up, read to them, play 20 games a day. She is British and I secretly wish I had a British accent.  Makes you sound so much nicer when you are yelling at the kids (yes, I tried it out). When our last nanny quit (by text, no notice) I was a little crazy with trying to figure out what to do. It seems there was a master plan out there for us as now we have Roxie and it is going great.

What else is keeping me busy.. Oh, Mike's extreme reaction to an antibiotic..  I have no idea how you can make it to age 31 and not know you are allergic to a drug. I am sure it means you are a healthy person and all that, but hey, there is something to be said for knowing you will get some crazy blood vessel damaging disorder if you take 1 pill...  He didn't know. He also didn't pay attention to it for the first day. It wasn't until his face swelled up, he started to feel loopy and his body was covered in a red rash looking thing that he thought he should bring it to someones attention.  Men.... He stopped the antibiotic and it still didn't go away (the rash, thank god his faced stop swelling). He went to the Dr. yesterday and it wasn't a rash at all. It is Vasculitis which is an inflammation of the blood vessels. Only reversible by steroids. Poor guy. This morning he is starting to look a little better but has 4 more days of steroids to go.

I will be out of town for the boys first day of school.  I am not normally a sentimental person, but this is making me pretty sad. I have them all ready to go minus water bottles. For some reason the only type of water bottle I can find are the ones made out of stainless steel.  One of them would knock somebody out with their water bottle and it would be very embarrassing for us. Especially considering their Aunt is a teacher at the school and would probably be the one to have to face the principal first on our behalf. So, my quest for plastic water bottles continues. I get the point behind the steel ones, but they didn't come up with that idea with little boys in mind. I am a little nervous at the thought of Mike getting both boys ready, remembering to take their first day of school picture and then getting them to the right classes, but I have to be in Denver so as long as his steroid regimen doesn't turn him into the Incredible Hulk, he is on his own.

I mentioned I have been busy with work. I have. I hate to talk about work to much on this blog but I am SO excited that our big idea has finally come to life. We purchased a RE/MAX franchise and just yesterday had our "soft" launch. We are officially RE/MAX Mosaic Properties. There is a lot to do now to get us ready for agents and all the big plans we have, but I am ready and so thankful for my husband and business partners. We all share the same vision and goals to be the best and well, it makes it easier when we are all on the same page.

Well, off to make waffles for the boys and start day 2 of my only chicken and yogurt diet.

Wednesday, July 28, 2010

To my oldest...

Yesterday you turned seven. It doesn't really seem possible. I don't know how you got to be seven and how the years flew by so fast. It seems like just yesterday we brought you home from the hospital and both mommy and daddy took turns staying awake for 4 days straight just so we could make sure you wouldn't spontaneously combust on us. You were our little first born. So long and skinny, no clothes would fit your lanky baby frame. 

There is a special place in a mom's heart for their first born and you have no idea how special that place is for me.  I won't ever forget any of your firsts. Your first bath (scary for mom, you screamed), your first steps (way to late if you ask the baby books), your first car trip (to see Grandpa Jeff in California), your first day of school (your backpack was bigger than you!). I won't forget how you are growing up to be a wonderful little man who worries about everything and questions everything and cares more about his little sister than anything else in this world.

I love sitting with you on the couch and reading our big book of answers. I love surfing the Internet looking for funny videos of cats and dogs. I love holding your hand because I know you don't think it's cool anymore but you do it anyways because you know I like it. I love talking to you because you are so smart and you ask such good questions. I love how you are so interested in my work and remember all the details. I love how dark your eyes are and how happy you get when we do a family movie night.  I don't ever think you will understand how much you mean to me. How I know that you are my little clone and how happy I am to have a little clone.

You might not like to cuddle, but the pictures you draw for me and your voice on the other end of the phone telling me to hurry home because you miss me are your cuddles and I cherish each one.

You made Daddy and I a family. You taught us how to love so much we thought our hearts would explode. You taught me how to be a protective mommy and when to back off and let you learn on your own. You have been a great example for your little brother. You have held my hand when I was sad with Ella and told me that she is the most awesome sister ever. You are wise beyond your years little one. You have no idea.

Your seven years here have been the best seven years of my life. I love you Ryzonimo. I love you forever and ever and then some.

Happy Birthday!

Monday, July 19, 2010

Can I just complain for a minute or two???

I am in a sour mood.  The kind of mood where I want to run outside and yell all the swear words I know at the top of my lungs and then just stand there and see if anyone has the guts to tell me to shut up.  Yep, that sour of a mood....

Why am I in a sour mood?

I am worried about my little Reed as he is always sick and randomly runs a fever and I just want to get him to the doctor to get him checked out so my mind will stop wandering to all the "what if's". He is going to the doctor tomorrow but right now I want him to feel better and not be sick.

I am angry about work and the snails pace we are moving at.  About 2 months ago now we purchased a national franchise and we have been slowly rolling it out.  I don't do slow.  I want to throw myself into this 100% and not sleep until the entire state of Arizona knows who we are.  Unfortunatly I am not the only one in control of the time frame.... The department of real estate and the phone provider and our new landlord and just about every vendor we deal with seems to not think that a fast roll out is necessary.  I literally wake up ready to go and have myself a little hissy fit every morning because I can't get to work until Ella is done with therapy and the nanny gets here.  I want to get to work at 5 and work until 8 and well, I can't. This is the worlds biggest internal struggle ever...  I love to work, I love to take risk and I love what we are putting in place but then on the flip side I love my kids and my home life and well.... Balance isn't coming easy these days. When you own your own business you are only successful if you make it successful, so when I stay home or leave early i feel like I am cheating the business but if I stay and work I am cheating my family.  Without the business my family suffers as I need to be able to pay for food and shelter and those expensive nintendo games so how do I win?  I think once the kids are back in school it will relieve some of the stress as I know they aren't sitting at home wishing Mommy could play with them but damn...It's not been fun lately.

I am also very angry about the fact that I am apparantly to old to work out.  I did a "boot camp" for 2 days and after that second day the back of my leg hurt. I assumed it would go away..  Nope.  It's getting worse. I haven't worked out in almost a month and if I leave my leg bent for longer than 2 seconds, I am in pain.  I wake up at night from the pain.  I am dissapointed in my old body.  I should be able to work out more than twice and not have such an issue.  It's like my body wants me to wear my fat jeans forever.  I want to go back to boot camp but honestly, given the fact that I threw up at the last one and now I can't walk without looking like a 90 year old,  I don't think I can show my face there...

I am mad that I haven't had more time to spend with those parents who are just finding out their babies have Down syndrome.  I want to be there for them. I want to one day be the one who is able to tell others that it will all be OK and that you can balance a family, a business and Down syndrome.  I just need time to figure out how to get the message out.

What else...

I am mad at people who drive slow.

I am mad at the store for never having Ella's formula

I am mad at it not being football season yet

I am mad that I got sea sick from riding on an intertube behind my boat (again, another testament to my old age)

I am mad that Ryan will be 7 in a week and I am not creative enough to throw him a party straight out of Pottery Barn. My parties are straight out of Party City.

I am mad that my housekeeper came and within 25 minutes of being home, my house is messy again

I am mad that I wake up early to enjoy my coffee and I am out of coffee.

Well, that about covers it for today.  Let's see, to balance out my sour mood, it is only right to share something about my little ray of sunshine, white wine. Oh, wait, I meant my kids....

Ella is doing awesome as usual. Just being herself and not really caring about much other than smiling and hanging with her brothers. Reed is sick but somehow manages to still be cute and Ryan is turning into quite the big brother. He is all about Ella and listening to each of her therapist and doing her exercises with her and making sure she is happy. I love them all even when I am in a sour mood.. :)

Thursday, July 15, 2010

I thought it was just Ella....

SOOO.. My super awesome therapist, Tess, told me about a family she is seeing that has a baby who is 4 months old and has Down syndrome.  She mentioned that the family would love to talk with us and she gave me their number.  I was really excited as I don't know anyone else who has a baby with Down syndrome. I called right away and we seemed to have more than just Down syndrome in common and it was a great talk, until..... she said these words.. "I swear our baby seems like a really high functioning Down syndrome baby".  Oh. See, I am a pragmatic person so either her and I have the only two high functioning Down syndrome babies in Gilbert, AZ or I am in denial about how things should be at this stage. Ella seems so normal (ok, I know she doesn't babble or sit up or always hold her head up) but I swear that from what I thought she would be like to what she is really like, she seems as normal as could be.  When you get a diagnosis like Down syndrome, the books make you believe that from the minute that child breathes air you will notice they are different. You get signed up for therapies and early intervention plans, you have people from the state at your doorstep evaluating your little baby for life long care benefits. You get sucked into this abyss of "wow" this is serious stuff. BUT, you have this baby and for the life of you, this baby seems so normal, so peaceful and perfect and beautiful. You realize all these people are here to help make her "more mainstream" but when you are alone with just her, you don't see this diagnosis, you see just a baby. It messes with you. Hearing this other mom say those words was a good wake up call but also comforting. It's nice to know that someone else think and feels the same way I do right now. Right or wrong, we both believe our babies are the little miracle Down syndrome babies of Gilbert, AZ!

What else today...

Losing a nanny isn't as bad as it seems when the new nanny rocks.  Our nanny of four years up and quit on us by text about a month and a half ago.  Yeah, it sucked. I don't really get why she quit other than she wanted a $2 an hour raise and we offered a $1.  I know that in the midst of her quitting Ella was in the hospital, Mike's dad was in the hospital, work was busy, etc, so we focused more on getting through the weeks rather than her absence and somewhere along the way we learned to make do without her.  Brigid stepped in like a gift from god and watched the kids this summer and we found a great nanny finder person (NannyPoppinz in case you need a nanny finder) and she sent us Roxie and Roxie interviewed with us and she was wonderful from the start. She's British and full of energy and today my children told me they like her a lot because she plays great games with them.  She came with glowing reviews and seems like she can make my life easier and I will miss Brigid but since she won't give up being a teacher, I think Roxie will work out just fine!

Good night friends! Remind me to write about work next time. It's drama like you wouldn't believe! :)

Monday, July 12, 2010

All that I'm after

Is a life full of laughter...

In the days after I had Ella, the chorus to this song ran through my head constantly.

All that I'm after is a life full of laughter
As long as I'm laughing with you
I'm thinkin' that all that still matters is love ever after
After the life we've been through
'Cause I know there's no life after you
I don't really know why this song stuck in my head. I wasn't a huge Daughtry fan and I can't say I had really heard the song a bunch before, but everytime my mind wasn't full of worry about our new life, I heard those lyrics playing loud and clear.  The night we brough Ella home I decided to give her a bath and I turned on my little radio in the bathroom and what did I hear? This song. I sat down (after removing her from her baby bathtub) and sobbed.  Giant sobs that were so loud Mike came into the room. I couldn't tell him why I was crying other than the fact that the song was on.  If you listen to the whole song, it doesn't really have a thing to do with my situation (I mean, Mike has never had his car break down on his way to tell me how awesome I am, not yet at least) but the song kept playing over and over again in my mind. 

I remember scribbling down on an envelope the words and a few thoughts after each line - All that I was after was a life full of laughter and suddenly, in the span of an hour and a few pushes, I was given a different life. No laughter, just pain and sadness. The song played in my head like a script that was mocking me.  As long as I'm laughing with you - nope, this wouldn't happen, I wouldn't laugh with anyone, what would there be to laugh about.  I'm thinkin' that all that still matters is love ever after - In those first few hours, all that mattered is that my life was over. My baby girl was different.  Love couldn't - at that point - fix that.  Nothing mattered anymore but the shocking news that was my new life. After the life we've been through - This line was the worst. Who did I piss off to get this new life? After the life we've been through shouldn't I get a new baby with rosy cheeks and an outcome just like other new babies? 'Cause I know there's no life after you - I took this line literally. No life after you. Everything would be different. I would never leave the house. People will stare. I will become so consumed with the diagnosis that I won't ever be the same.

Yes, I thought these things. I heard this song everytime I shut my eyes or took a shower. The minute I had time to just be quiet this song played and I teared up. I cried for everything these lyrics meant, this stupid chorus was ruining my life and it played constantly.

At some point I downloaded the song and played it over and over again and cried and cried and hated Chris Daughtry for writing a song about a girl and making it so much about a baby to me. 

After the first week at home (and a few glasses of wine and a few good cries) I started to hear the song differently. All that I'm after is a life full of laughter -  Of course that's all I am after. That should be all that anyone is after. Laughter. What is better than a big belly laugh from your kids or your husband or your 90 year old grandma. NOTHING! Those few pushes didn't change what I am after! As long as I'm laughing with you - If I am laughing with you it means we are both still above ground and able to communicate. Maybe, in Ella's case it doesn't quite yet mean laughing real laughs, but it means I am with you, smiling, happy, that means we have things to laugh about. Who doesn't find humor in throwing paper clips as your assistant or slapping your husbands butt as we stand in the checkout line at the grocery store! I do!! I'm thinkin' that all that still matters is love ever after - This might be just a line in a Daughtry song, but it is very prophetic - love ever after IS all that matters. Of course it is. I could be the richest person in the world or the prettiest or the president of the united states but really, all that matters is love. Love in any form. Love from my kids, my husband, my love of pedicures or my love of my work. Love is what matters. Loving what I am, what I do, where I am. Loving the fact that I am here and my baby girl is different.  To love something means you love it no matter how awful it is (when I get a bad pedicure I still go back for another 3 weeks later) and you love it no matter how wonderful it is. After the life we've been through -  So true. Something I couldn't understand right after I learned Ella had Down syndrome, but now, after what we have been through, I understand it.  I get that sometimes you have to experience something bad to appreciate something so good. When life is too perfect you get spoiled. You forget to thank your lucky stars and throw the salt over your shoulder when you spill it. After getting bad news (once you emerge out of the fog) you see things differently. The flowers are a little brighter and the salt doesn't spill as much (but when it does, you make sure to toss the whole shaker over your shoulder). 'Cause I know there's no life after you - Do I really need to elaborate? Ella is here, she is perfect and without her, I wouldn't of ever thought this deeply about a Daughtry song.  There is no life after her and sometimes, I don't even know how there was life before her...

Thanks American Idol.  Your offspring saved me a ton of money in therapy.  :) If I was more talented I would have this song playing in the background right now, but I am not, so instead, I leave you with a picture of why I know the chorus of this silly Daughtry song plays everyday in my head.  Sing the song (just the chorus!) and look at this picture and you will get it. 

And thank you to Erin who is never afraid to call me out when I don't keep my promises.

Thursday, June 24, 2010

Don't be late, Darn it!

Ella says hi and would like you all to be impressed with her excellent skills at holding her head up.

Ella would also like you to know that her mommy woke up at 4:45 this morning to work out. Her daddy did not.

Now that we have Ella's thoughts for the day out of the way, let's move on to my frustration of the day:

I mentioned in my last post that Ella has 3 great therapists. I lied. She has 2 great therapists and 1 therapist who started out great but decided being on time wasn't important. The time we set for our appointments was 8:30. She arrived at 8:40. OK. Trying not to be a bitch, so I let it slide. Next time, 8:45. I bring it up to her. She tells me she lives in Maricopa and with traffic it isn't possible to make it here at 8:30. Hmm. Ella is your first appointment of the day and I am not asking you to be here at 6:00 AM. I decide to be nice. I move the appointment time to 8:45. The next week she arrives at 9:00. OK. Now she pissed me off. I tell her we need to keep the appointment time at 8:45. She agrees and tells me she won't be late. The next week she texts me 30 minutes before our appointment and tells me she has a funeral she forgot about and won't be able to make it. THEN, the next week she shows up at 9:15!!!! I sent her home. I don't have time for that nonsense. I get being a few minutes late every now and then but really, out of the 5 weeks you never show up on time once? Go mess up someone else’s schedule…

Today I set out on my quest to find a new therapist. Easier said than done... My support coordinator at the DDD is on vacation, no pediatric therapy office in the valley has developmental specialists, I called the state program that is supposed to be my support system and they had no clue what I was asking for. I not only wasted my mornings waiting for the therapist to show up, but now I have wasted time out of my day trying to find a new therapist with no luck. Ella will now miss 2 weeks of SI therapy and I feel horrible, but I can’t have someone 30 minutes late constantly. We have other therapies to get to, Ella is supposed to get an hour with each and her tardiness not only cut into that therapy session but her next one as well. Grr.

Today I started my new nanny search.  I seriously thought about throwing money, free laundry service, food, beer or whatever it would take to get Brigid to stop teaching and be our nanny full time but I know she likes the free meals teachers get at Chipolte and that is something I can't match, so I assume that come the end of July we will be nannyless again.  I will make sure to keep you all updated on how the search is going. I can only assume it will provide lots of great stories for the blog.

Now on to an Ella update:

Ella has been running a fever since she had her shots and it makes me sad to see my baby Ella Bella not feeling well. She is so cute when she is sick though. She tries to be her normal little baby self but it’s like at ½ speed. I also decided it is time to push for some occupational therapy.  She keeps her little hands gripped so tight and occupational therapy will help that as well as get her ready for holding a spoon and toys. I feel like I walk a thin line each day with not knowing if something Ella is doing or not doing is totally normal or Down syndrome related.  I want her to eventually have OT anyways, so I am going to start now and then I don't have keep staring at her hands to see if she opens them. I know, I am neurotic...

Something else I didn't mention last post is that we are going to start learning baby sign language in July.  I am excited for this as they say that it is really a good way to communicate with Down syndrome toddlers as their speech can be so delayed. I kept putting it off but we need to learn it.  The Dr. asked me if Ella was blowing raspberries yet or making certain sounds and she isn't so I have to assume that her speech will be delayed and get her understanding the signs sooner rather than later. My biggest fear about learing sign language?  That I won't remember it. I swear, my mind is mush these days and I am afraid I will learn it one day and the next I will be clueless.  I will be the only one in my family unable to communicate with Ella. It sounds irrational, but I mean it. I had a dream I was trying to sign to her and my hands weren't doing anything and she was crying out of frustration.  Tell me that doesn't make a mommy feel bad when she wakes up the next morning!

The boys... I haven't mentioned the boys in a while... They are being obnoxious little tornadoes and really, who ever invented summer vacation should be ashamed of themselves for thinking it was a good idea to have siblings together for 2 months. One of them might end up taking a long trip to Grandpa Jeff’s in California if they don’t learn how to get along real soon. They are cute, but challenging. Reed is into swearing and Ryan crys over any little thing.  They make an awesome pair.

Tuesday, June 22, 2010

4 months...

I have a 4 month old baby... She is pretty darn cute. I won't lie. I wake up at 5 AM and just stare at her sleeping little baby face and I am so happy she is mine.  I feed her and we snuggle and I sometimes make lots of noise to wake her daddy up just so he knows we are up and ready for him to snuggle with us.  For the most part though, I sit and I stare and I wonder how the heck did I get here...

Well, without being too graphic, as I am sure we all know how I got "here" (and if you don't, I would suggest staying far away from wine and the opposite sex until you figure it out), the bigger question is how have we gotten from day one in the hospital to today, day 126 of Ella Bella's life without going crazy.

We got here by lots of love, patience, family, friends and good support.  The minute we opened up to others about her having Down syndrome was the minute we could start living our lives again.  When I talk about Ella to someone who doesn't know she has Down syndrome, I feel like I am cheating them out of a huge part of her life story so far.  Her birth story isn't complete without it. Her first doctor visit or her first stomach bug are all interlaced with her extra chromosome.  Ella is a normal, super happy baby, but she is also a baby with Down syndrome and as I have learned in the past 126 days it is not something that I need to keep from people.  When they ask me how my delivery was, I respond with the truth... Great until minute 22 of her life. I tell them as much of the story as time allows. I don't cry, I don't say it with sadness or a hushed tone. I say it with pride.  My Ella is who she is because of what she is made up of.  Down syndrome is part of that, her adorable grin and chubby cheeks are part of that. Her little cry when she is hungry and her snores when she is sound asleep are part of her too.  We take every part of her that makes her "her" and embrace it.  I don't walk around shouting from the roof tops that Ella has Down syndrome, but I don't hide it either. And really, when you look at her, all you see is adorableness...

She had her 4 month doctor visit today....  She now weighs a whopping 10 lbs. :) well, 9 lbs 15 ounces to be exact...  She is doing so great. Growing in line with her "curve" and meeting most baby milestones.  She is a champ at rolling over and holding her head up when she is on her belly. She is also a champ at smiling, tracking objects as they move and eating.  If we were grading her though, I would have to say that Ella could use a little work on holding her head up when supported in a sitting position, cooing and laughing.  Now, to be fair, she is on the verge of laughing (according to her Aunt Brigid who knows all about laughing) and she does coo but not very often. The best thing??? I have 3 wonderful people who come into my home once a week who do nothing but make sure Ella is getting a lot of practice in the cooing, laughing and head holding departments.

Yes, 3 people, 3 times a week... Do you know how many extra vacuuming sessions that equals out to be? (You all know about my vacuuming obsession, right?) A lot. Like 6 more times I have to vacuum (3 before and 3 after) but really, it is so worth it.  Ella has a team that swoops in and focus on her and her little muscles for an hour at a time.  These people are amazing and great with kids and don't get discouraged when the tiny little baby in front of them falls asleep or screams bloody murder. They just plug along, smiling and working towards our end goal of keeping Ella in line with her peers.  I am so happy to have them here. Yes, there are times that I wonder if what they are doing is really helping, but I have to remember to take a step back, stop looking at today and look at tomorrow and then I realize it is all worth it. The fighting with insurance, the sleepless nights about her interviews with the state health agencies. They are all worth it. Ella is thriving under our team approach to her development.  Doctor's appointments like today make it all worth it. When the Dr. asks if she can roll over and when Ella not only shows her but does it 4 times, I get it. I smile and I get it.  Ella is only 126 days old but in those 126 days, she has beat a lot of expectations. I like that.

An entire month has gone by? Really?

When I started this blog, I made myself a promise that I would never go more than 5 days between updates. I did good in the beginning, then, as life has a way of doing, I got busy and the days don't just fly by, they zoom by in supersonic time. The type of zooming where I wake up and think it's only been a few days since I posted but really it's been a week and then all the sudden, it's been a month and I want to post, but the daunting task of catching up on the month gives me writers block and well, instead of posting I drink a glass of wine and go to bed....

That's not fair to Ella though. This blog is about her and will hopefully serve as a way for us to document her milestones and remind us that even though we might get frustrated or sad, overall we have so much to be thankful for and so much to look forward too. I also hope that one day, this blog might help others who are taking their first steps into the new world of "special needs babies".  So, for those reasons, let's just quickly recap the last month and then get to the important stuff - Ms. Ella...  :)

In the last month I have:

Gone to Vegas
Gotten a nasty stomach bug
Nursed my 3 children and 1 husband back to health from nasty stomach bug
Spent a night in the hospital with my baby girl hoping she could survive the stomach bug
Made the biggest business decision ever
Spent a week in Denver learning how to implement said decision
Realized a nanny that quits by text because she only got an 8% raise and not a 16% raise is a nanny I can live without
Been sad that Mike's dad has been in the hospital (twice)
Been even more sad that my Grandma has transitioned from being able to be at home to being at hospice and now is spending her last days at a group home
Nursed 1 husband back to health from the stomach bug (yes, again)
Dealt with my business partner leaving me twice for a week at a time (yes, I miss her)
Learned how to fire a therapist
Learned how to love a therapist
Wished Fathers Day could have been better by my own dad not being so far away
Caught up with a long lost friend who I have neglected for way to long
Celebrated 2 birthdays

See, I have been busy. No excuse though, I know.  Ms. Ella is much more important, so for that reason, here is my goal:

I will post to this blog AT LEAST 2 times a week.

If I do that, will you promise to still read it?  If we pretend that the last month never happened and with the next post we all act like you knew how the last month has gone will it be OK? Because if so, hang on, I don't ever set a goal I can't reach...  :)