Wednesday, May 28, 2008

Bark, Bark, Bark

After working exhausting 12, 12, 16, and 8 hr days in a row this weekend I pulled in the garage last night at 1145pm to find Carson in severe respiratory distress from croup. He had terrible stridor and was really struggling to get the air in and out. I grabbed him up and we headed back down to work to the ER. They took him right back to a room and started racemic epi on him because he was satting 87. His temp was 101.2 so he was loaded up with Tylenol for the fever and then Decadron to help reduce the swelling in his airway. Carson's subglottic stenosis makes any additional swelling in his upper airway very severe but last night was one of the worst times I have ever seen him. His asthma was acting up also so he had two rounds of Albuterol to help calm the wheezing. Once they had his sats back in the 93-95 range we were off to x-ray. Thankfully it only showed croup and no pneumonia so they didn't need to add antibiotics to the list of meds for the night.

Carson started to have some rebound stridor around 2am so they kept us until 0430 to make sure he was not going to go into distress again and need intubated. Several popsicles and cuddles later, Carson and I finally made it home with q4hr Albuterol, Orapred, Tylenol, and a much more milder form of stridor. It was a long night and we both slept in until 0930 this morning. Carson saw his regular ped at 1145 today and they said just to continue the Orapred (steriods) for 4 more days, keep him on the Albuterol, and watch the stridor for the next two nights.

Al and I were just talking yesterday about how the kids hadn't been in the hospital for a few months. I guess we should have kept our mouths shut. The very long arm of prematurity keep extending it's reach year after year and touching our lives in so many ways. It is amazing to me that almost 5 years after Carson's birth the intubation and ventilation that saved his life, is still having a negative impact. He is our first little wonder but I wish he didn't have to go through these trials so frequently. It never gets easier to see him struggling to breathe during an asthma attack or when he gets croup. Please send prayers that our little wildman gets well soon.

Tuesday, May 20, 2008

Backseat Ramblings

On the way home from picking up the boys from Gigi and Bobpop's house tonight the boys were chatting up their futures in the backseat.

E - "Mommy, I want to say goodnight to the moon tonight."
C - "Eli, the moon is not out now! There are clouds! Mommy, why can't you see the moon when there are clouds?"

Me - "The clouds are between us and the moon so they block our view of the moon."

C - "Oh, I see, so the moon is really high up in the sky where astronaut go -- I want to be an astronaut when I grow up."
E - "I want to be a moon when I grow up!"
C - "Eli, you CAN NOT be the moon when you grow up because you are a h-u-m-a-n b-e-i-n-g!!"
E- "Can I be a dinosaur?"

I just love listening to their little minds work. The play-by-play between brothers is priceless as well.

Sunday, May 11, 2008

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.

Friday, May 02, 2008


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.