More Mother's Day Pics

Gifts from the Heart

"Happy Mother's Day!" rang out from the hallway this morning at 6:50am from two overly excited little boys. Carson and Elias jumped into our bed and showered me with kisses and hugs. What a blessed mommy I am. Once Al and I were able to wake up, stretch, and convince the boys that fitting the dog and four people in our bed was not the best choice for the morning, we made our way downstairs to open up handmade preschool Mother's Day presents. The boys could barely contain their glee as they ran to get the cards and crafts all their energy and hard work went into. Of course I made a HUGE spectacle over how wonderful each handwritten name, molded clay, and painted wooden box were because as every mother knows......these are the best gifts you can receive (aside from kisses and hugs!).

Carson crafted a wooden jewelry box that he painted with green and blue paint. He added glitter on top and pink hearts on the front because, "he loves me SOOOOO much". The bag it came in was also a Carson creation complete with a hand print tulip with fingerprint stem and leaves. He said I can keep my wedding rings and bracelets in it for when I go to work so they don't get lost. What a smart, sweet boy I have.

Elias molded a textured clay paperweight with all kinds of different designs on the top. It was wrapped in blue tissue paper and then had a white, lacy, dyed card attached that said "Happy Mother's Day 2008" on the front. Etched in the back of the paperweight was his name and the date. I think I'll keep it on my nightstand upstairs.

Both boys also made me cards and bought me a Snoopy card as well. Daddy cleaned my house top to bottom while I was working the past few days. This included cleaning our carpets and re-organizing my closet! I also received an amazingly sweet card from him as well. We are heading over to my parent's house for an indoor cookout (of course it rains today) this afternoon. Happy Mother's Day to all the mommies we know, especially Mom, Mom, Great Granny, Grandma Helen, Aunt Ty, and Connie. I hope you all have a fantastic day full of love just as we are.

Precisely

Stolen from Liz

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

March for Babies

Our March for Babies to support the March of Dimes was this Sunday. Here are a few pics of the boys. Elias is holding a beanie baby that we used to measure his size in the NICU and Carson is holding one of his first size diapers from his NICU days. They certainly have come a long way and we have to thank the March of Dimes for their research in prematurity for helping them be here. A special thanks to everyone who helped support our walk this year. Research into the causes and effects of prematurity is vital to all of us.

A close-up of Elias' shirt

Elias with his NICU beanie baby bear

Elias today with his NICU beanie

Close-up of Carson's shirt

Carson in the NICU w/ his first diaper

Carson today with the same size diaper

And finally..... a kiss goodbye!

Scootin' Around

Yesterday Al and I surprised the boys with a trip to Target to buy them each a brand new scooter. Target had many different styles on sale for $19 and we thought they would be the perfect thing to take on our camping weekends instead of hauling their bikes along with us. Carson picked out a two wheeler Spiderman scooter because he was "big enough to balance like the cool kids". Eli insisted on following suit with the Spiderman theme and grabbed up a three wheeled webbed design of his very own. Our car couldn't get home fast enough!! The boys [not] so patiently watched us put their new toys together and then hit the pavement. Literally. For both of them.

It was a learning experience and a bandaid and some kisses later, the two of them were out scooting around the sidewalks again. Carson is a pro because he has been practicing at Gigi and Bobpop's house since last summer on their scooters. Eli has a long way to go. Yesterday was more of an "I'll stand on it Daddy and you push me" kind of day for Mr. E. Today the little stinker caught on after watching Carson glide with freedom up and down the block. Jealousy is a wonderful motivator. Thank goodness the weather has been absolutely perfect for outside play the past few days. The boys have come in for bedtime covered from head to toe in dirt and scrapes ready for baths and bedtime stories. How I have longed for the spring to come so our little explorers could get grubby like little boys should. I would strongly suggest picking up a scooter if you have young kiddos for a cheap and fun spring/summer outside toy. They are fantastic! (the bonus core strength and balance PT training Eli will be getting is just a plus!!)

Cheers!

Eli has yet another video swallow study (VSS) this morning. I have lost count on how many this makes for our little man but the number is getting way up there. He did great and Al and I couldn't be more proud of him. Thankfully we do not have to go back to thickening everything again but modifications are necessary to help protect Eli's airway from aspiration. If someone would have told me that almost three years into this micropreemie journey we would STILL be dealing with aspiration and dysphagia, I wouldn't have believed it. We have come a l-o-n-g way though.

This morning Eli was well behaved and cooperative for once and followed directions to the letter. We should have taken the video camera :) With a sippy cup including a valve, Eli was safe on thin liquids!!! Unfortunately he demonstrated extremely large boluses, deep laryngeal penetration, and high risk for aspiration when drinking out of an open cup or sippy with no valve. Eli loves being a big boy and using open cups but everyone agreed that he is no longer allowed to touch the things and must go back to "baby cups" as he calls them. So, Al and I are off to shop for some new sippy cups with valves to replace his super cool big boy cups that match all of his plate sets. After his cyanotic episode last Wednesday from aspirating Starbucks' Apple Spice, we aren't taking any chances. I never want to see Eli trying to imitate a smurf again!!

As for the pocketing of food and choking on solids, the OT and speech therapist recommended Eli start back with feeding therapy at school. They said that because he is hypotonic (low tone) in his mouth and most of his trunk that he doesn't realize there is that much food in his mouth or what to do with it. They also think there may be some sensory issues involved as well. So, back to the drawing table to get Eli eating meats and breads safely. It will all be worth it though. He has already come so far with his tube feeds and therapy. Someday we may just get rid of that MIC-key button after all!

Al and I are so proud of our little man. He is chugging along and taking baby steps to get there the entire time charming the lead vents off the radiologists, therapists, and doctors. Boy are we in trouble....

Finders, Keepers

Boys will be boys, I guess. The first is a pic of Elias last summer in Myrtle Beach and the second of Carson a few nights ago after a day full of playing outside.





What is it about the relationship a little (and big) boy has with his penis? I am constantly reminding C & E that it's attached and most certainly WON'T fail off anytime soon. They must not believe me because aside from the hundreds of times a day I catch them checking to make sure it's still there, they sleep with their hands on it just to make sure!!

AAAAHHHHHHHHHHHHHHHHH!!!!! It does make for good blackmail picture though ;)

Just living life...

... one day at a time. I have been working a bunch of hours in the past few weeks to help make up for my missed time from surgery and to pay off our never-ending medical bills. Adding two shifts a week has been a bit exhausting but it has allowed me to prioritize the time I have off from work into more meaningful time with Al and the boys. Carson and Eli are getting so grown up and it seems like everyday they are learning a million new things and adding to their increasingly complex personalities. It is a wonderful evolution. How can they be closing in on turning 3 and 5 in two short months??? I no longer have babies (or even toddlers) and we are chugging full force into a truly fun-filled time.

Carson is growing like a weed on Miracle Grow right now. His appetite is ferocious and our grocery bill is expanding weekly. I can only imagine what it will be like when they boys are teenagers!! The all boy phase of army play accompanied by fake gun noises and gear has begun in addition to potty jokes that can have him hyperventilating on the floor like a silly school girl. Gotta love little boys. Carson also had another evaluation at the Behavior Clinic and got the official diagnosis of severe OCD. This wasn't a surprise for us especially since Al has some mild OCD himself. They are also sending Carson for some more extensive testing throughout April to look at all aspects of his behavior, intellect, social, and adaptability/sensory skills. He will be evaluated by many specialists and hopefully they will be able to put together a plan to assist in his IEP better this year and for future planning for grade school services. The Behavior Clinic still thinks that his IQ is up in the genius range but his outside diagnoses need to be addressed so he can reach his full potential in the classroom and socially. This testing should give us a better idea of what therapies and/or medications can assist Carson in this. He is such a bright and amazing kid that we are looking forward to seeing how new therapy specifically designed for him will help him harness himself so he can function at his top level.

Elias is growing more an more obstinate by the day. He is definitely going to give us a run for our money now and in the future. Poor Carson is relentlessly teased by Eli and his antics. Then our little 'angel' will grin and try to look as innocent as he can. We know better but Carson gets incredibly frustrated and rightfully so. Pneumonia hit Eli once again just over a week ago but at least it wasn't aspiration pneumonia (just good ol' normal pneumonia from crappy lungs) and he didn't need hospitalized. After steroids, antibiotics, and more breathing treatments than imaginable, our little man is on the mend and running around like a crazy man once again. Sleep is getting to be a fight every night with both boys in the same room and Eli is the main culprit. We have resorted to putting the kids to bed at different times and the other one has to be asleep before putting the second in the room. Eli has caught on to this however and will routinely go poke Carson or turn on the light to purposely wake him up. Any suggestions on a headstrong, active, ornery, almost 3 year old former preemie would be appreciated. It is fun to see his personality developing each day though.....even when we are exhausted!