Xavier's first year :-)

In honor of Xavier's 6th birthday today (yay, Xavier!! :-), I thought I'd reminisce a bit with pictures from his first year.

For those of you who know us well, you know that as a family we have faced a multitude of challenges because of Xavier's diagnosis - a type of Congenital Muscular Dystrophy called Muscle Eye Brain Disease. He is developmentally disabled, yet healthy medically (except for his seizure disorder). Xavier's strength, patience, and pleasant nature allow us to face all the adversity with a blend of hope and humor. Our little boy is ornery, particular, giggly, persistent, and above all - lovable.

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Xavier was born April 2, 2003 at 5:59am, at Akron General Hospital. He was born at 37w5days, in thankfully, a very uneventful fashion. I had gone into labor on my own, and the delivery was quick and (relatively) painless. At the time he was born, we knew he had hydrocephalus, which had been diagnosed by ultrasounds. The neonatal team was there just in case Xavier needed them upon delivery - but he was a champ, with apgars of 8 and 9. He weighed 5lbs 13oz, and was 20 inches long.

Xavier was immediately whisked off to the Special Care Nursery, so that he could be assessed and monitored, and supportive care in form of IV and temperature/humidity control was begun.

New Daddy Nick, along with his mom and dad, and my dad:

X and I meet officially for the first time:



In the afternoon of his first day here with us, he was transferred over to Akron Children's Hospital, in order to prepare for his surgery the next morning. At 10am April 3rd, Xavier had a VP (ventricular-peritoneal) shunt placed surgically by a neurosurgeon. It is still in place today, and drains the fluid that builds up due to a blockage in his brain into his abdominal cavity.

In this photo, he is under the bili-lights for jaundice. You can see the shunt tubing going down his belly, a dressing over the surgical incision on his belly, and (obviously) a scalp IV. Despite all that - doesn't he look relaxed? LOL.

Our little baby glow worm in a "Wallaby" blanket, again to deal with the jaundice. For my coworker friends, and anyone who knows about bilirubin levels - he got up to 22. Yeah. 22. Scary.


You can really see the shunt tubing running down his chest wall under the skin in this picture. And his IV has been rotated to his right arm.


Finally, after 16 days in the hospital, he came home. :-)

With Daddy, at his baptism. He's wearing a baptismal gown lovingly made by Nick's mom out of material from my wedding dress.



At my sister Kelly's wedding (which Nick and I were both in), 2.5 months old.

Glasses! 4 months old. Severe nearsightedness and retinal dysplasia are part of his diagnosis.


Physical Therapy - Xavier received services from Wayne County Early Intervention from 2 months of age through 3 years. The ladies there are nothing short of extraordinary and we love and appreciate them to no end. Not only are they skilled at what they do, but they care so much for the kids, and develop relationships with them and their families. I am a better person and mom to Xavier for knowing them. Here he is with Kathy U., who worked with Xavier for 2 years. :-)





I remember this moment very clearly (8 months old)- we'd just arrived home, and I set Xavier on the couch to take off my coat. I came back to find him being entertained by Ruby the dog, who was chewing on her bone and making the couch jiggle. He was laughing like crazy.

Helping decorate the Christmast tree:

Him in this snowsuit brings to mind "Randy" from "The Christmas Story", right? ;-)

With a Christmas gift -



Blanket ride!

In his beloved (and now retired, because he's enormous) "ducky tub":



Corner sitter built by the lovely ladies at Wayne County EI.


More PT:


At about 11 months, he learned how to hold a small bottle:

Happy 1st Birthday! Here he is at his party - positively glowing because of all the cake, presents, and love in the room :-)

He still loves cake this much.

This is one of my all-time favorites of Xavier. What a handsome, happy baby he was :-)


Thank you for all the special memories you've given us, my sweet baby. You amaze and inspire me daily, and I love you to the moon and back. XO.

Think, my friends. Think.

Spread the word to end "the word".

go to: www.r-word.org

and please pledge...in honor of him:

Getting so big

I noticed last night, more than I have in the recent past, that Xavier is growing up. He looks more like an elementary school-age kid to me now, than a little preschooler. I act like this surprises me, but actually it shouldn't. After all, he's turning 6 next week, and starting kindergarten in the fall. :-)


Here he is after bathtime(minus glasses ;-).







(he's beautiful from any angle, if you ask me...)

And one of my two turkeys together. :-)

*sigh*

Yes.

That is my son.

Scaling a wall.

Playing together

Ben loves to make Xavier laugh. And he knows that this can be rather easily accomplished by making any repetitive noise (especially if its goofy). Here, Ben's making the toy Xavier is playing with make a clicking sound. Xavier thinks its hysterical.


Notice how I have Xavier all rigged up so he can't get bend his body/legs over to his right side? He's developing tightness all along his right side, and especially in his legs and hips because of his preferred sleeping position. We focus on stretching a lot, but left on his own for any length of time, he will roll on his right side or curl into a backwards 'c' if he's still laying flat on his back. Here, he's kicking his legs happily in a bicycle motion...and he's such a stinker, I think its half with the intention to get that bumbo seat out of the way so he can curl his legs up, instead of keeping them straight. ;-)

And...we're playing outside on a regular basis now! Hooray spring!