Thursday, April 30, 2009


Bailey has been attending school for 1 week and 1 day. I meant to post something sooner, but life at our house has been a bit more hectic than usual. I'm going to try to post as much as I can now, but it seems both of the girls are PMSing at the ages of 3 and 1! I tried quiet time, but that didn't work.

So, on Wednesday we all drove to school and took Bailey to her classroom. She was very eager to join the class while we were there, but when we left she became a bit upset. The tears came and went throughout the day, but it really wasn't too bad. That day they did an Earth Day celebration where Bailey planted a plant to bring home (it's dead already) and got the most adorable Earth Day shirt. She did not have any interest in taking a nap on a mat... and she still has no interest!

She continues to get better each and every day, and I love seeing her excitement when I pick her up. She still isn't interested in napping. They tried rocking her (which works until they put her down), placing her in a pack and play, and using her mat on the floor. It's so funny because at home she can fall asleep anywhere... even her exersaucer!

I've been working for two weeks to find a child care center/vpk program for Aubrey. Finally, today, I think I found the one for her! I was very impressed with the staff, the security features, the programs offered, and the class sizes. I plan to call tomorrow and get her enrolled to hopefully begin next week.

In 7 days Bailey will be 2!

I think Bailey is teething. She's fussy, had a slight temp last night, is chewing on her fist, and is drooling!

Work is going okay. It's been a bit of a crazy schedule. I go in before school to do paperwork or whatever I have time to do, leave to get Bailey ready for school and drop her off, then return to work to finish everything I need to do for the day, then pick Bailey up at school which sometimes completes my day, or I take her to either my parents or Keith's moms house and return to work. School will be out in June for 2 months, so it'll be interesting to see what we end up doing then.

I received this in my e-mail today and thought I'd share.
Thoughts of a Mom

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 psychiatry.

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 children with cerebral palsy. We have labored to prove to insurance 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 on 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 Perl 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.

Monday, April 20, 2009

Fun Day

So, today I finally got my car repaired. Had a battle with Bailey's therapists on why I'm discontinuing therapy, why they haven't sent the requested paperwork to her school, then I finally got copies myself and took them to the school myself. Then, went to Target and Sports Authority to get Bailey's school supplies, and now we're home and I'm calling and researching child care facilities. This is such a hard thing to do. I have a few contacts who are trying to assist me in this job, because I don't want the girls to be harmed wherever they go, and I'm researching the state inspection reports. I worked overnight last night, took a 2 hour nap this morning, and somehow I'm still awake. Well... I'm no longer on hold. Gotta go.


Thursday, April 9, 2009

It' a Beautiful Day

We closed on our house today! I'm so excited to be rid of that nightmare! I miss it sometimes, but I don't miss the $$$ mortgage, the smelly bathroom (no, not that type of smell!), and the not-so-safe neighborhood. However, I will miss the spacious bedrooms. I do love where we are now. I love that we have 3 fenced acres for the girls to play in, I love that we have the ability to eventually purchase it if we'd like, I love that we're saving money, and I love the security I have here. I feel like a huge weight has been lifted.

There's more... yes, I have more good news! Bailey will be starting school in the next few weeks. Bailey?... yes Bailey! I'm so excited that she'll be attending classes at Achievement Academy. She'll be in a class of 10 students with 1 teacher and 1 para.

Well, I guess that's enough excitement for today.


Prayer Request

When Bailey first received her diagnosis and we began frequent stays in the hospital I had the pleasure of getting to know someone going through a similar situation with her daughter, Julia. Today Julia went into respiratory distress. Please keep their family in your prayers.


Cracked Pot

I received this from a friend today and thought I'd share. Enjoy.

An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck.

One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. 'I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house. '

The old woman smiled, 'Did you notice that there are flowers on your side of the path, but not on the other pot's side?'

'That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.

For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are there would not be this beauty to grace the house. '

Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are and look for the good in them.

Wednesday, April 8, 2009

Back to Reality

So, we returned from a nice vacation and it was back to reality. Priority for us was to deal with Bailey and see what was going on with her. On the cruise she wouldn't eat or drink. She would store everything in her mouth, but never swallowed. We went to her pediatrician on Tuesday(last week) and he determined she had MRSA again. We did not do a culture, but he was confident. Then on Wednesday we ended up in the ER with Bailey because her temp went to 103 and wouldn't break. Thankfully, we were taken to peds immediately, and seen quickly. They did do a culture, opened up the wound and drained it, and decided not to admit her, but have us return several times over the next few days. So, we returned and everything continued to improve. Then, I received a call from the hospital confirming the culture came back positive for MRSA. We are continuing to watch her, but she is still showing improvement.

Well because of the MRSA issue, her eye surgery will have to be rescheduled. This will be her second and hopefully last eye surgery. They'll be doing it at All Children's Hospital in St. Pete. The doctor tried glasses in her office, but saw no improvement in her vision/crossing. Please pray for success.

Aubrey is battling a cold, I've already won my battle, and Keith is starting his. Bailey... well she's still without symptoms.


Out Trip Home

And finally, we returned home. We really enjoyed our family trip, and we enjoyed spending time with each and every person who joined us. I regret that we didn't get to spend as much time with everyone as I had hoped, but it was nice just having dinner together as a family.

Vacation Day 4

So day 4 brings us to Great Stirrup Cay. This is the private island for NCL. We got off the ship around 11am, boarded the tender, and arrived at the island soon after. Aubrey and Keith were already there and playing on the beach. I took the stroller, thinking it would be easier, but we did have a few difficult moments. However, I don't regret taking it. We went for a swim, Aubrey played for a while, then we went to the BBQ and tendered back to the ship. I think I was wrong in the previous post... I believe this was the day the girls and I napped. Later in the evening Aubrey went to the Kids Club and Keith and I went to the adult joke show and the adult quest game... very interesting. I saw more body parts than I care to see.


Vacation Day 3

So day 3 we arrived in Nassau. We had breakfast (notice a theme? we love to eat), and got off the ship at 10:00am for our excursion. We were greeted by a nice lady and asked to wait... and wait... and wait... while the others in our tour got off the boat. Then we walked... and walked... and walked until we arrived at a boat where we boarded and took a journey to another boat. Then, we made the transfer from one rocking boat to another rocking boat. It actually wasn't as difficult as I thought it would be... even with the children. The boat we just got on is called a semi-sub (similar to a glass bottom, but not as bad). So we climbed down to the bottom of the boat. We saw various fish and Aubrey really enjoyed seeing all the different types. She did want to see Nemo and a shark, but that didn't happen. Then we climbed back to the top of the semi-sub, transferred back to the other boat, and returned to the pier. After we got off the boat we boarded a bus for our city tour. We went to the Queen's Staircase, drove past the hospital, and visited two forts. Then, we returned to the ship. The girls and I took a nap. After dinner, Keith, Frank, Molly, and I went to the Newly Not So Newlywed Game, and Aubrey went to the Kids Club where they took over the ship during their Pirate Parade. That night Bailey started showing signs she wasn't feeling well... I just hoped we could make it home before she got took sick.


This cute dog was waiting for us went we returned to our room for bed. Aubrey destroyed it, because I told her she had a surprise in her room. She didn't realize THIS was the surprise. Instead she thought the surprise was inside the dog.
Aubrey and Michael at one of the forts.

This is the tail end of the Pirate Parade

Monday, April 6, 2009

Vacation Day 2 (Happy Anniversary!)

So, on day 2 we left our hotel around 11:00am and headed to the port. It was a short drive, only about 10-20 minutes. We arrived at the port, unloaded our luggage with the porter, and parked. This process was easy. Then, we checked in, got the key to our room, had our boarding pictures taken, and then we were on the ship. We were greeting with champagne, and the girls were greeted with a glass of OJ. The ship was beautiful. Very clean and the staff seemed so friendly. Then, after just being on board for a few minutes we, of course, decided to eat. After lunch we found Keith's dad, Molly, Tim, and Michael. We visited for a few minutes and then all separated to find our rooms. Aubrey changed to her swimsuit and we went to the pool deck for the sail away party. After that we had dinner, went to a show, then Keith and Michael went to the bar and Aubrey and I had fun shopping and watching my dad play blackjack. Aubrey was so spoiled. The lady in the Del Sol shop painted her nails... each one a different color, then gave her two rings, then I got her a pair of sunglasses and a new shirt. After that, Aubrey passed the nightclub where they were playing loud music and dancing. She was almost spellbound. So, we went inside and listened to the music and Aubrey enjoyed dancing.

Aubrey in the kids pool.
Whew! It was very windy!

Bailey was excited!

Yes, she's spoiled.

Beautiful Miami as we're heading out to sea.
Our room... it isn't very large!
This is Aubrey's bed. We did fold it out at night, and she slept very well.
She was amazed and excited!

Saturday, April 4, 2009

Vacation Day 1

We began our vacation last Thursday. Keith and I both started our days at work. I took care of any paperwork that needed to be done before my return and left work around noon. I also met with the electrician at the house that is hopefully sold. When I arrived at the house the electrician informed me that the buyer had just stopped by and told him all the repairs that are needed. I, of course, made a quick call to my realtor to inform her of how unhappy I was that this lady took it upon herself to discuss repairs with my electrician. It isn't her house yet, and she shouldn't be there without her realtor. We determined all necessary repairs, called the sheriffs office to do another incident report (because we keep finding items which have been taken), called the insurance company to add more to the claim, then went home to finish packing.

Keith got home around 5:30pm and we loaded the car and went to my parents to get them and the girls. We all piled into the van, put a DVD in for Aubrey (I love our van!) and started our 5 hour journey to Miami. Bailey cried for over an hour. We finally stopped for a break and I was able to get her to fall asleep. We arrived at our hotel in Miami around midnight. We had two rooms, both with double beds. I called front desk and asked if they had a pack and play or crib for Bailey to sleep in and she said "yes, but we can't get one for you until tomorrow morning when housekeeping gets in". Well, that does me no good. So, in 1 double bed slept me, Bailey, AND Aubrey. I actually slept fairly well.



It's dry season in Florida and the ants are back... and in the house!

Keith: (spraying the ants) I don't know where they're coming from.

Aubrey: I think they are coming from outside.

Isn't she great? I love her!


The past few nights have been filled with dreams/nightmares of our upcoming closing of our nightmare home. We purchased this house in 2005, when the market was a sellers market. Well... let's just say we paid a bit too much for it. Now, several years later we've decided to sell it. So, we found a realtor, moved out, put a sign up and hoped for the best. Then I receive a call that someone broke into the house. Well, of course we had damage. A broken window, hole in the ceiling, all copper wiring removed (even the plug to the oven), wiring to the AC removed, and freon drained from the AC. So... we get an offer on the house. We start making repairs on the house, then find out the buyers have vanished. Then, a few days later we get another offer. So, final repairs should be made next week and we should close before the 15th... hopefully.

Oh! We're back from our cruise. I'll update later.