WE LOVE YOU SELENA!!!

She was screaming with excitement and had the best time! I took Ella to see Selena Gomez. We gave her the ticket and a cd for her birthday last month, and went with her best friend, big sisters and their moms. (including Miss Kimmie)





It was truly and evening of little girls, mommies and mini vans! We sat in front of Ella's friend Riley from dance, we sat behind the school nurse, her daughter and a friend, we sat just a section away from more dance friends... Ella was a social butterfly talking to everyone she knew! (I wonder where she gets that?)

It was a great night, considering it was 102 degrees when we arrived and still in the 90's when Selena hit the stage after dark!




Ella sang and danced for hours and still didn't fall asleep in the car on her way home. It was great to see her have so much fun! (and she actually got up and had a great day at school the following morning, which was our main concern!)

Alex back to school (and the sequel)

Okay, so things have been a little crazy around here... but Alex went back to preschool this week! He was so excited to start pre-K. Last year, he just wasn't ready in the fall, so we waited until he was potty trained and sent him to the red room, with the other 3 year olds in February. He LOVED it and this year, he couldn't wait to get back to his buddies!

A good luck hug from my sister

He's in school 3 days, Tuesday and Thursday, he's in the yellow room pre-K. Wednesdays, he's in the Rainbow Room, which is one of Ella's old classroom for his Explorer group. He already loves his teachers for both classes and is excited to have a few of his buddies from last year, as well as lots of new friends in his class.

Rainbow Explorer teachers Mrs. McCluskey and Mrs. Lud

Yellow Room teachers Mrs. Protzman and Mrs. Haughey

Really the only glitch we've had is my Mommy fail. We showed up Tuesday morning, ready to go! Daddy took the day off, Grammy was in town from Florida, so she joined us, we all packed up and headed for school. We took pictures outside, and went in to see the teachers... but something was horribly wrong. No one was there. Wrong day. School started Wednesday. So we came back the next day and did it all again, minus a few of the photos. Alex was un-phased. He still loved it and well, let's just call it a dry run!

FINALLY!!! In class with my buddies!

Those cute, chubby cheeks... not so much!

Max finally had his appointment with the neonatal developmental psychologist today. We've had to cancel twice, because of his ear infection. This appointment included an evaluation and testing, so he needed to be on top of his game.

It was not an "everything is fantastic and he's great" appointment. But we were not surprised by anything either.

Max's speech and eating are delayed. We know this... we see it everyday and we wanted to ask about it. Now we know more of why....

He has "low muscle tone and fat deposits in his cheeks." It's caused in large part by the lipids, which he received as part of his IV nutrition for the 3+ months when he couldn't eat. Now those cute chubby cheeks are keeping him from chewing and speaking properly. So we're being referred to a speech and eating therapist.

Because of the delay, it's impossible to tell if he can comprehend at the appropriate level. He's not where he should be. The doctor would put out a book, ball and cup and ask Max to pick up the cup. Max can't do that. He'll pick up what he wants, but doesn't follow commands like this. Much like he doesn't way bye bye or play peek a boo. He will kiss if you smooch at him, but that's about it.

It could simply be because he can't speak and to say the sound helps to associate it with an object or action. But it could also be that he has permanent damage from his brain bleed at birth, that's the scariest part. Because he is probably 6-8 months delayed in speech and feeding, it's just too early to tell what's what at this point.

It explains why he only eats crunchy foods, because he can hear and feel them. It explains why he stuffs his cheeks full, like a chipmunk, because he can feel the food and get the sensation of chewing up something. It also explains why he still drinks from a bottle, his cheeks and tongue are not strong enough for a sippee or straw. So we keep working.

We hope and pray everyday that Max will reach his full potential and live a happy, productive life someday. With the physical, we knew that he might not crawl, or might not walk, but we knew there would always be options to help him work around those difficulties. We were prepared for a walker or for a wheelchair, but at this point, the doctor feels his physical development is going well. She expects him to walk on his own in the next couple of months.

The cognitive development is much scarier. It's harder to tell what is happening, and when it's happening and why... but we know that some brain damage won't be reversible. We know that he's more likely to be autistic or have other learning delays. We just continue to work with him and the therapists to help him do the best he can and we take in one day at a time.

We'll love him the same no matter what, we just want the best for him and we want to see him surpass all the expectations people have for him.

I think the best part of the visit, was when the doctor was working with Max on problem solving. When he couldn't figure something out, he would turn to his brother and pat Alex on the arm, obviously looking for help. Or when I asked where Alex was, it was the one word association that he made right away. He would physically turn around and lean over my shoulder to see Alex standing behind me. It was amazing to see how he knows and relies on his big brother. It was so sweet to see how already, he knows that Alex, and any of us will help with whatever he needs in life. We are working to help him, as well as giving him the tools to help himself. We are so blessed to have him in our family.

One year at home

Yesterday was another big milestone for Max... and an even bigger one for us. It's now been one year since we brought him home from the NICU.

That take home day, was the day he really became ours. No more doing things on doctor or nurses or respiratory therapists schedules. It finally was all about our family, and just Max. He could eat, he could sleep, he wasn't hooked to wires or tubes or monitors, we could lift and hold him at anytime for as long as we wanted He was OURS!

It's a day that we never thought would come. It was 123 days later than we wanted it to be. But we'd take it, whenever we could get it.

(first evening at home... snuggling with Daddy)

It was a scary first night at home one year go. We slept with him in the co-sleeper between us. I say slept, but not really. He couldn't lie on his back with out gagging and turning blue. We put him on his tummy and took turns keeping watch over him. We woke every 3 hours to feed him another bottle to keep him growing bigger and stronger... my what a difference a year makes!

(one year later... snuggling with Daddy before bedtime)

Max has grown and thrived and loved and laughed and we are grateful for every minute of this first year at home with him! And we're looking forward to so many more...

Ella: Part 6

We're just a week away from Ella's sixth birthday. I decided to have her party a week early, to avoid all the chaos of school starting... so we opened up the Robinson Drive-In in our driveway this past Saturday night.







It was great fun and we could not have asked for a more beautiful night! Clear, light breeze, no bugs, AWESOME!

Second chance at first day of school

I can hardly believe it's that time already. This last month has been a whirlwind... with me working weekends as well as freelancing, plus Ella's birthday. (I'll do that post with pictures next) Time has just flown by and today, our girl went back to school!

I was thinking about how in the world we managed it last year, before she started kindergarten, and realized, we really didn't. Max was still in the NICU, he came home ONE DAY before she started kindergarten. We had her birthday party almost a month early, to avoid germ exposure close to his discharge date, and we were on auto-pilot.

It makes me sad that the first day of her kindergarten experience wasn't as exciting as it should have been. Just look at this face. She was ready to go to school, but terrified to leave her new baby brother who had been home for less than 24 hours, after 4 long months in the NICU.


Plus, the newspaper article on his milk donor was the front page story that morning, so everyone stopped us on the way into class to talk about Max, and her teacher talked about it in front of her class, before they even started the day... talk about stealing her thunder!



This year, it's different, and we are all so excited! Meet the teacher night was fun. Ella has Mrs. Roy for the 1st grade. The most exciting thing for her is the fact that they have a bath tub in class. (it's a giant claw-foot tub painted bright blue and filled with pillows and stuffed toys for reading)



This morning, she jumped out of bed, was dressed and clean in 15 minutes and ready for breakfast!



This morning, we were all ready to go and enjoy Ella's first day as a first grader! Even the rain couldn't dampen our spirits! This is going to be a great year!!!

Grateful

I am up late tonight and it's peaceful... because the other 4 people and 2 dogs in this house are sleeping. It's times like this when I can finally stop and hear myself think. It's been awhile since posted... and I felt like I owed the blog followers an update. We are doing well. We're finding ways to cut expenses, I'm interviewing for multiple jobs, investigating childcare options, etc... I feel better about it all than I did just a few weeks ago...

I was beside myself. I think I was so overwhelmed with the thought of not being with Max every minute, that things just overwhelmed me. And now, I think it all makes sense and really, all comes from the same place for me. Fear. I spent so many nights and minutes of every day away from Max and my constant fear was of losing him. I was afraid to let him go, from the moment they let me hold him for the first time. I still cringe just a little bit when anyone else holds him or breathes in his face, or kisses him. I'm starting to let a few people closer to him, but with the immunity issues, we're limited on that... and it's hard for me. I feel so protective of him, so responsible for keeping him alive. It's like we walked out of that NICU, and his life was in our hands. Okay, it's that way when you bring home any baby, but it's magnified like 400 trillion times when it's a micro-preemie.

But after a total meltdown where I literally went with no sleep for a couple of nights and made myself sick... I finally let some of those fears out. I think just admitting how afraid I was of all this, and how sick over the thought of not being by his side every minute... has helped me to find a way to come to grips with all of it.

It's not what we planned... but neither has anything in the past year of our lives been "part of the plan." The bottom line is that we've always found our way through. Sometimes, we still can't believe what we've been able to do and overcome... but I truly believe God has a plan. I may know nothing else... but believing in that gets me through. As hard as it all is and has been... I know already that God had a plan for me. Things in my past that were hard or painful or challenging... have all led me to this point. God intended for me to move countless times to more than a half dozen cities, to meet Troy, to leave TV, to have babies, to get laid off, to go into early labor and to have Max. He intended for me to be Max's mom. He still has plans for me and for Max... and I'm working to follow his plan and not my own.

That's the hardest thing you know. The waiting... I'm not very patient. I'm a control freak. I want things my way and I want them now. But God is teaching me. I've learned patience, understanding, humility, fear, compassion, and acceptance in this year. (among so many other things I'm sure I've forgotten) And now, I'm learning again. I'm learning to get my strength back, to not fear every minute, to relax, to enjoy. I'm grateful for every minute, for every lesson, for every gift God has given me.

Tonight, I watched our 3 beautiful babies playing in the bathtub together. It was wondeful watching them splash and smile and smear bubbles on each other. It was Max's first time really to hang out and play in the tub with his big brother and sister. It was a quick bath, since Mommy worked, dinner was late, and we needed to get everyone into bed before crabby time hit. But, it was wonderful just to see them sweet and clean and together, having fun and doing the stuff that we always thought our 3 kids would do together. It's simple times like this when I catch myself... just enjoying the easy, everyday moments of life.

I don't know his plan yet. I may never know it. But I believe. I believe that he wants what's best for us, that he will guide us, that he will help us. I believe that he has good things in store for us... and I'm grateful for that.