Monday, August 22, 2011

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.


Thursday, August 18, 2011

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...


Monday, August 15, 2011

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!!!