January 30, 2010

It's been 2 years...

... since we found out something was wrong with our little boy. I still can't believe it's been that long since our lives were turned upside down. I still remember everything about that day. Tim and I took this picture right before we left for our ultrasound. We had planned on registering right after we found out what we were having. Man were we shocked at the news that we got that day. The outcome didn't look good for our unborn son.

Two years later...

...our beautiful 20.5 month old is blowing all of us away with how absolutely fantastic he is doing. I can't believe how well he is doing to be honest with you. He is sucking through a straw now. He is sticking his tongue out and licking everything (I know that doesn't seem big to most of you, but he has never known that he has a tongue). He is trying to pull himself up onto his knees. He got fitted for his braces that we will hopefully receive late next week. He now officially army crawls and hops on his butt to get to where he wants to go. He points at everything. Signs "please" after everything!!! He shakes his finger at the dogs when they lick him and says "ah, ah, ah!" Which translates to "no, no, no!" He draws on everything even though the paper is right in front of him. He puts anything (phones, remote controls, cars, etc) up to his ear and says "ha" which means "hi." He licked a lollipop for the first time tonight and actually liked it. He dances to any type of music. He LOVES and I mean absolutely ADORES Mickey Mouse. If he sees him on TV, on a ball, on a balloon at the store, anywhere- he bounces up and down with a huge smile on his face waving and saying "ha... ha... ha!" It could possibly be the cutest thing ever. He puts his finger up to his nose when we say, "shhh." He knows where his eyes, ears, nose, mouth, belly and feet are. He hates wearing socks. He thinks it's funny when we tell him no with a stern look- he smiles and continues to do whatever it is that we told him to stop doing. I could go on and on and on about what Max has been up to in the past few weeks. I can't believe how much he has changed in just a month. I hope you enjoy him as much as we do...

Max was a little excited Christmas morning

Who is this guy?

Max and Daddy playing in Max's new ball pit

Just being cute

Does anyone know what the phosphorus content is in a green crayon?

Have a great rest of the weekend everyone!

January 28, 2010

We haven't forgotten about you guys

I am so very sorry for the very long delay.  We are remodeling our bathroom so Max and I have been at my mom and dad's house for the past 12 days.  We moved back home yesterday even though we're still not finished.

I promise I will post more very soon- including some pictures of Max and the new bathroom :o)

Talk to you all very soon.

Oh and Max is doing FANTASTIC!!!

January 12, 2010

I can't believe it!

Max is 20 months old today!  It's absolutely crazy to think that my little man is going to be TWO in four short months. 

We just finished with our 6 month evaluation with First Steps.  This is the program that we go through for Max's speech and physical therapy.  They are very happy with his progress considering that only a year ago he wasn't able to do anything (sitting up, rolling over, getting himself in and out of sitting, etc).  He is now doing all of that.  They are obviously really wanting him to be crawling, standing, walking with assistance and talking- so these are our new goals for the next 6 months. 

I mentioned to Mr. Dan (physical therapist) that we noticed that Max will only stand when he has his shoes on.  His little ankles and feet turn in when he does it without shoes on.  So the next step for this is to get him some braces for his shoes.  Mr. Dan didn't want to go down this route this early, but Max is showing signs that he needs them.  So, I have to get a doctor to write a prescription for them and we will get that process started.  I am anxious to see what kind or progress Max will make with the added support. 

Everyone believes that Max's communication has been put on the back burner because of the gross motor explosion he is having.  He used to say things that he doesn't anymore, so PT and speech think this is what's happening, which is common. 

Other than that, they are very happy with his progress and feel that he will do well within the next 6 months.  It is clear that after this 6 month stretch we will hopefully be going into transplant time.  Max will be out of therapy for about 8 weeks post op, so we are really trying to push him to reach these goals before we go into surgery. 

Hope everyone has a good week and enjoys the heat wave that's coming :o)

Happy 20 months to our little man!

January 8, 2010

Nephrology Appointment

Max had his nephrology appointment on Monday which means that he had his labs drawn as well.  He is getting so strong, which makes it very hard to hold him down while they draw his blood.  He knows as soon as we sit down in the chair and I pull up his sleeve what's about to happen.  His bottom lip slowly works its way out and his little eyes start welling up with tears.  It's awful!

His labs came back looking pretty good.  He had a couple (phosphorus and sodium) that were slightly elevated which resulted in us stopping two of his medications.  We will have to go back in two weeks to have them rechecked to be sure their not too low.  Other than that everything looks pretty good.

Max has grown a centimeter in the past month. This puts him at 78.5cm (30.9 inches) long.  He also weighs about 26 pounds 6 ounces.  The boy is getting big.  He's not a baby anymore. 

I can't believe he is going to be 20 months old on Tuesday.  20 months!!!  That's crazy.   I am starting to plan my baby's 2nd birthday party. I know it's very early.  I know!  I go a little overboard, but he's worth it.  It's our last big bash before the transplant, so it's going to be another big one.  He deserves one more (maybe 2 or 3 more) HUGE birthday parties.  The kid has been through the ringer and back and dang it he has earned it.  By the way, we're doing a monkey theme and it's going to be fantastic!

I think that's it everything. Hope that all of you in the tristate area are enjoying the snow.  Have a great and safe weekend.  I'll try to post on here a little more often for those of you who check daily :o)

Thank you for the prayers.

January 7, 2010

Pray for Kate

Some of you may remember the blog of Miss Kate that I follow.  She recently finished her 5th and final round of chemo for a very aggressive brain tumor.  The MRI that will determine how treatment went is today.  PLEASE pray for a clean scan.  This MRI will give them a lot of answers and information on what's next for Kate.

Kate just turned six years old and she needs a lot of prayers.

PLEASE pray for a clean scan and for Kate and her family.

Thank you.

January 2, 2010

Happy New Year!

We brought 2010 in with some hesitation but are looking forward to the changes that it will hopefully bring. 

Wishing everyone a happy and heathly new year!