August brings back to school blues

I can't believe its been a month since the convention in California! Wow! Summer is flying by so fast! For the first time in a long while, I really don't want to go back to work. I'm having an amazing time with the kids, and Tim & I are really in sync right now with each other. Perhaps it is all the sleep our little princess is giving us this summer! Well, let me catch everyone up a little. First, I'm sorry I didn't blog right after convention. But honestly, I just wasn't ready and I've been so busy trying to get through my to-do list that I created while I was there. The convention was wonderful, as you know if you've read so many other entries by other participants. It was very emotional for both Tim & I and a little overwhelming at times. But, overall, I'm so glad we went. For the first time, I feel like we're a team when it comes to Abbi. He more than participated in the sessions, and we met some really nice families. We enjoyed socializing with the WS adults so much, and we've definitely made some friendships that I hope continue to grow. The best part of the convention for me was that it gave me HOPE! I really believe that Abbi will have a bright future, and that I CAN handle all that goes along with being a parent of a special needs child. Plus, it reassured me that we're on the right track with what we're doing with Abbi and also gave me some insight as to what we've got to fight for in terms of her therapies. So, that's where the list began. I've been following up on some yearly tests, like the blood calcium level. I'm planning to see Dr. Mervis in Louisville at the end of the month and we're also having her visit the eye doctor and dentist as well. We had her eyes checked last year, but at the conference they mentioned doing it yearly for awhile. So, I've scheduled that and we're looking for a good pediatric dentist. I thought we'd wait another year, but once again in one session they suggested the sooner the better.
Anyway, besides those appointments we've continued her other therapies and she's really blossoming this summer. She's saying about 10 words now; some more coherently than others! She's trying to walk!!! She cruises everything and will stand on her own in the middle of the flooor. And, much to my chagrin, she's climbing everything! She climbs out of strollers, shopping carts, her feeding chair, ect... She's making me work a lot harder these days, and as you can probably tell, I'm loving every exhausting minute of it! Charlie and Abbi are interacting more as siblings and actually wrestling over some things! My sisters did a wonderful job with the kids and returned them to me with healthier habits. Charlie is trying vegetables and eating more than cheeseburgers and pizza! Abbi is sleeping through the night in her own crib and drinking beautifully from a sippy cup!! She sings E-I-E-I- O with Barney, which is the only fault I can find with her Aunt Veneicia for introducing her to that purple dinosaur!
Okay, I'm done. I hope you enjoy some of the updated pics.

Well, it's almost 3:30 in the morning and I just can't sleep. I'm so anxious about this trip to CA! I'm nervous about what I'll learn at the convention, and how I'll handle it. Will I be pleasantly surprised and reassured? Or, will I be even more worried about Abbi's future? PLUS, for now, all I can think about is leaving my two beautiful kids for almost a week!

I've never been away from the kids more than two days, one night! And, that was leaving them with their Daddy. So, the thought of both of us being gone from them this long has me worried. I totally trust my sisters, but I just can't help thinking about what might happen... I'm afraid of Charlie running off while they're at the beach and possibly getting in the water w/o them knowing! Or, how much sand Abbi is likely to eat? Actually, I know Charlie will miss us, but he loves his Aunt Veneicia and cousin Allison. He'll be too busy playing with Allison to miss us much! Plus, his Aunt Canessa will keep him entertained with stories and songs! But, what about Abbi? Yes, they've been around her since birth and basically know how difficult she can be at night. But, they've never had to care for her for six nights! Thank God she is sleeping well now. At least, for the most part! Tonight, she's been cranky and up twice so far! I think she's teething again. But, I worry how she'll do without us. She's such a mama's girl right now. I haven't even left yet, and I'm already missing the kids and thinking that I should try to fly back earlier! A few months ago, when Abbi wasn't sleeping more than 2 hours at a time and I was busy with work and stressed about Tim's job situation, a vacation without the kids sounded just right. Now, I'm not so sure...

We've totally had an awesome summer thus far. Abbi is doing great at her new PT/OT/Spch therapy. I'm glad we made the switch, and I increased her therapies to once a week for each. I figure when the insurance runs out we'll worry about it then! She's just making such progress! She had her yearly evaluation at the Williams Clinic in Cincinnatti. Dr. Lamphear was pleased with her progress; she's made 6-8 months progress in a ten month time span! I'll take that! She's starting to finally say a few words; and more importantly in my opinion, I'm beginning to think she understands a few of them! I've been really concerned about her speech, so I'm really happy that we've got her into therapy now. At her speech evaluation, they said her expressive language was mildly delayed, but as I suspected, her receptive language was moderately to severely delayed. I've really been concentrating on working with her in all aspects this summer and we've seen such improvements! She's saying at least 1-2 more words each week, she's finally got "Hi!" and "Bye,Bye!" down, and I think she's starting to understand nose, toes, and "NO!" She's definitely more independent! Today, she fed herself almost a bowl of carrots using her fork and spoon! She's also been standing independently for about 30 seconds or so several times a day. She's getting so strong and really starting to problem solve, like I can see her thinking and concentrating when she's climbing and playing at the local play area in the mall. Plus, she's finally improving her grasp, which was a concern of Dr. Lamphear's. She's able to grasp smaller objects and place them in and out of the bowl/containers. Okay, you get the picture! I'm just so proud of her!!! Sorry to go on about it so long...

As for Charlie Bear, he continues to grow up! He's starting to abandon his obsession for dinosaurs for a love of super heroes! Lately, he insists on wearing his Batman costume everywhere! He's loving the pool and hanging out with friends.
And, I think he's starting to interact more with Abbi. They're cute cuddled together watching Baby Einstein and laughting together at the same silly parts! Plus, he's actually jealous of all her therapies- he really thinks they're just indiviualized play time with really cool toys that he doesn't have!

Okay, I'm off to bed and I hope I get some sleep! We're arriving in CA via Las Vegas on Wednesday! I'm really looking forward to hopefully meeting you all! I might not post as often as I should, but I try to read up on everyone else every few days!

Safe travel to everyone!

Time has a way of slipping away...

I can't believe that I haven't posted in over a month. A lot has been happening. For the most part, we were busy with the usual- soccer games, family events, birthday parties, and day to day mundane chores! I'm really looking forward to school letting out next week and spending some time with the kids. Charlie has already voiced his desire for swim lessons and wants to know daily if its hot enough for the slip-n-slide. Surprisingly, Abbi also seems to have taken to the water this year and really enjoyed her float at the pool. She looked soooo cute in her cherry swim suit!

I've been battling lately with not only my own mood swings, but the bureaucracy of private insurance. My employer has changed providers, and Abbi's therapy group is no longer in network. Ok. So, I switch to one that is, right? Easy enough. BUT, (and there's always one) the waiting list in our area for OT and PT is between 6-8 months at the groups within network. SO logically, (mistake there) I would think my insurance would provide a waiver for my current OT until a place within network became available. I'm on three waiting lists. Because anyone should know that a child with a syndrome noted for developmental delays should not forgo therapy for any length of time!!! Suffice it to say, that I've been blessed once again. After battling this for almost two weeks, I received a call on Monday that a local (5 min drive) group has vacancies for the summer in PT & Speech. But, OT is still a little questionable. In the meantime, I'm thankful we have those two set, and I'm especially excited about the Speech therapy since she's never had this before and I think she will benefit the most from it right now.

While I'm venting, may I also just state that I'm sick of every physician and agency spouting off the wealth of support available to families with special needs children. Why? Because though support and services are available, they are very limited in their outreach due to the lack of funding and manpower. Therefore, for the most part, they offer a band-aid type fix!

Whew! Enough! As I stated, I'm battling my own moods right now. I'm just a little more quick tempered lately and I tend to focus too much on the negatives. When, I really have a lot of positives right now and should thank God for answering our prayers! Abbi is finally beginning to sleep for 6-7 hours at a time, and she is also starting to turn the pages of books and really cruise the furniture. Her sweet, bubbly and playful personality is starting to shine through. I'm amazed at how determined she is and curious about everything! She's Miss Nosey!
AND, I finally made our reservations for the National conference and confirmed some travel plans. I'm really looking forward to it!

Finally, the title of this blog- it has recently struck me that my baby boy only has one year of preschool left before he goes off to Kindergarten- I can't wrap my mind around that! And, that means that Abbi, my baby, is going to turn two and with some timid steps become a toddler any day now. Already, the struggle with her sleep is becoming more of a memory (still rather vivid at times :) and I'm focusing more on the joys of having both Charlie and Abbi. Time does have a way of marching on...

Busy, Busy, Busy

I can't believe its been three weeks since my last post. We've been so busy with Charlie's birthday, the start of soccer season, work and life in general that I've not had time to really blog. So, here's a quick update.

Charlie's dino party was dinomite! He loved being in the center of it all! I think we started celebrating on April 5, and he was still asking if we had any more presents to unwrap on April 10! His birthday is actually the 8th!! In fact, the morning of his party, he sneaked a present early. We had placed two wrapped gifts on top of the kitchen cabinets, which he saw and devised a makeshift ladder out of the kitchen drawers and counter to reach. He's never been a climber before that morning! Anyway, I loved having the party at COSI. The kids loved the hands-on activities like making a star gazer and shooting a bottle rocket. Plus, they made their own ice cream! It was delicious along with the dino cake! I think everyone enjoyed themselves. Abbi kept crawling into the session circles for each activity. She was so curious, and after the party, several families stayed to enjoy the large play area, which has a water table. Abbi loved playing in the water! I have such cute pics of her playing in the water and the little girls pushing her around on the push toys.

Soccer has started and Charlie scored two goals the first game. Or, I should say session since score isn't really kept ( except by proud moms like me when their kids score!). However, today he decided that he wanted no part of team play and we had to sit him out. It was rainy and he was whining! Both weeks, Abbi has slept thru the whole event!

As for Abbi's PT, we've found a new person! She's evaluating Abbi over the next two weeks and deciding if a recommendation of increasing her therapy to once a week rather than every other is necessary. I'll have to battle that one with our insurance if she decides in favor of every week. Abbi's doing really well with her mobility. She's pulling up on everything and has officially began cruising the couch and ottoman. Today, while I was doing laundry, I noticed how quiet she was being and decided to investigate. I found her in the bathroom, and she'd pulled herself up by the toilet and proceeded to play in it! Thank God my son flushed it! Needless to say, I think toilet locks are on the list for next weekend. Despite all this exercise, she's not sleeping well these days. She's cutting her back teeth and is very fussy. So, we're getting even less sleep. I really hope she outgrows the sleep issues, and I know teething has an end in sight! Despite her nightime crankiness, she wakes up in a good mood. Friday morning, she woke up giggling and laid in the bed for at least 10 minutes just rolling and playing with her feet. Then, when she realized she had an audience, she decided to play a game of peek-a-boo. She's a charmer!

Well, as for work, my student teacher has started and she's wonderful! So, I'm hoping to coast into May. I might even read a book. Of course, not one for leisure, but for the class I'm teaching next year. But nonetheless, a book!! Sorry this entry was long, but I wanted to recap what's happening with Abbi. I'm hoping to post new pics this week and catch up with everyone else's lives.

Take care!

Spring Break's Over

I hope everyone had a joyous Easter! We had a wonderful time visiting with my sis in Virginia, and my parents loved spoiling Abbi some more! She took a few steps behind her walker and tried pushing her cousin Allison's Pooh car around the dining room. My dad was so proud of her; in fact, you would have thought it was the first time he's seen a grandchild take a few precarious steps! Of course, Charlie also received plently of love! His grandma happened to buy him a Tshirt with a Triceratops on it! He wore it even though the temps were only about 50 degrees. He looked so cute in it with his cool, new blue jean jacket that his aunt Veneicia bought him. He even dragged us to the National Natural History Museum for the Dino exhibit! My little niece wasn't to be outdone by her older cousin and demanded a souvenir dino as well. Except, her's was a large TRex and she kept calling it her "dinaho"! LOL!
Yet, despite a restful week, the stress of going back to work is pressing down on me. I have a million things to do, like grade, since the quarter is ending this week. Plus, I still need to find a closer OT and our PT just left and there's no replacement yet. And, I really need to address Abbi's sleeping issues with our Pediatrician. She's so restless at first and she never self comforts. She's sleeping better now that we're using Melatonin, but she's still up every four hours or more often if she loses her bink or jerks awake! Will we ever sleep thru the night? Will Tim and I ever sleep in our own bed again? Well, those questions will remain unanswered for now, and I'm off to bed. We have our first soccer lesson tomorrow and I've got to email the guest list for Charlie's party. I can't believe he's almost 4! By the way, I finally gave in to my overwhelming exhaustion and perhaps utter laziness, and ordered his birthday Dino cake. But, I'm still planning to make cupcakes for preschool! I had planned to make his and Abbi's Bday cakes from scratch until they're five; but, I think really cool dino cupcakes should still count for something!:)

Thank goodness for spring break!!!

I haven't posted for about a week, so I thought I might update everyone before we head out to the D.C. area for Easter. I can't wait to see my sis, parents, and my cute little niece Allison! I'll post some new pics next week since my mom' s bringing my camera to me, which I left in WV over President's Day weekend!

This last week has been hectic. We had a busy weekend with Easter Bunny photos, a big egg hunt, and of course shopping for an Easter dress! Needless to say, I was tired before Monday even arrived. School was busy with OGT practice tests to grade and parent/teacher conferences both Tuesday and Wednesday night. I feel like I've barely said hello to my husband and the kiddos the last few days! So, I realllly can't wait to leave for our trip!!! Seven hours in the car with two small kids- Yeah!!!

Anyway, I had a cool moment today when a coworker asked about the kids. I was relaying Charlie's 4 going on 16 attitude and how obsessed he is with dinos when I decided to share Abbi's diagnosis with her. After she listened intently for a few minutes, I noticed how she seemed to know about WS. That was odd! Then she shared that a girlfriend of hers had a son with WS! What's the odds of that with the rarity of this syndrome? Anyway, he's now 25 years old. He does live at home, but drives and works an independent job. She went on for several minutes about what an awesome kid he was ( he grew up with her daughter) and how much she loves him. She described him as being the type of child that everyone wishes their child could be like: kind, thoughtful, respectful, hard working, etc....! I was so psyched!

On that note, I'm going to attempt to finish these reading projects and update my gradebook before heading home for the evening! I hope everyone has a joyous Easter!

Blessings

Thank you to everyone who said a special prayer for Abbi. She had echogram today, and we heard nothing but good news. She's stable and the condition hasn't progressed any since birth. Therefore, we don't have to go back for a year!!:) Of course, if we experience any changes, we're to call. What a blessing!! Plus, it was almost 60 degrees today and the sun was shining. I was able to tour the MMRD preschool today, and we're considering enrolling Abbi next year for two half days per week. I think she'll progress even more with their focused training. In addition, daycare today mentioned transitioning her to the pre-toddler room. My baby girl is growing up!
Plus, I was able to take a walk to the nearby Walgreens with my Charlie Bear for some much needed Easter eggs and candy. We really enjoyed the outing and had a picnic in bed before going down for the night.
This has truly been a beautiful day!!

Enjoying the little things

Well, I think we've finally dug out from all the snow! It was a record snowfall with a total of 20.5 inches in a 24 hour period! Charlie tried to play outside,but we only lasted a about 30 minutes on Saturday because it was too deep. It was up to his waist in places with the drifting snow. Anyway, we enjoyed being snowed in and making snow cream. It was also nice to get a day off from school on Monday!
Abbi continues to do well. Today, a child was crying and she told him "No, no,no.." That's her latest word. She also ate her first chicken nuggets and some avocado. What a weird combination. I'm praying all goes well at the echo gram on Thursday. I believe she's still stable, but I'm always apprehensive before one of those. I believe I hear my little princess, so I'm off to soothe her once again.
Good night!

What really matters?

For the first time this week, I feel a real sense of calmness. Perhaps, it's because the weekend is finally within sight or I'm too tired to whine, moan, or complain one more day. Either way, I feel at peace tonight. After bickering last night with my hubby over stupid household chores & overreacting to my almost 4 year-olds accident (yes, on my bed), I woke up and felt terribly tired, sad, and still frustrated. I wanted to kick something! Why did I fuss so much at Charlie over wetting his pants? Yes, he's too old for accidents, especially when I had just changed him into his PJs and told him to go potty. But, more importantly why would he sit down to a favorite show on Noggin and wet himself (and did I mention on my bed)? Who was I really angry with, myself or him? A little of both, but really myself. Why has he had two accidents in the last week or so? Is he trying to tell us something? Is he mad at me for taking a class on Wednesday nights? For being too tired (grumpy) lately? Does he feel neglected or jealous over Abbi? Is he mad that Daddy is taking classes? WHY? Then, already feeling this stress, I realized that we had missed the bulk trash pick-up by minutes! At this point, I wanted to just kick my husband. Somehow it was his fault that the trash was piling up and my life was filled with chaos. Yes, it would take several hours and a little " Where for art thou, Romeo?" and some upper classmen's laughs about a video on Utube before I'd realize that the problem is really me. Yes, my life is chaotic at times. Yes, my husband can be a slob and forgetful. Yes, my son can throw tantrums and have accidents! Yes, my princess can be demanding. But, overall, what really matters? I smiled thinking about my son Charlie's recent fascination with dinosaurs and mastery of his alphabet. He loves to tell us what different things begin with, like cat starts with C. Abbi is doing remarkably well. She's crawling so well and pulling up on everything. I think she's said a few words like "No" and "Yes" in addition to Mama and Dada. She's resting better. She's starting to play with toys!! What's my problem? I'm forgetting to focus on what really matters! Who cares if the house is a mess or if the laundry/trash piles up? I'm reminded that I've been blessed with two beautiful children and a husband that truly loves us. The rest doesn't matter. At least, not for tonight!

Back to work

I went back to work today, which is always hectic after having a substitute. Why? Not because they do a poor job, but rather your students want to reassure you that everything you do is the right way and everything that the sub did was CRAZY! Yes, every class must give you a replay of the day before and assure you that the sub was CRAZY! Anyway, my Charlie bear is feeling somewhat better. But, Abbi isn't eating well this evening. That doesn't bode well for the night! I hope everyone enjoys the pictures. I'm hoping to add more recent ones this weekend after we visit the EASTER BUNNY!!! I can't wait!

Absent Again

We had a wonderful weekend. Tim & I enjoyed a "date" on Saturday afternoon, and then had friends over for dinner and a playdate that evening. Abbi & Charlie both enjoyed visiting with their grandparents on Sunday. Abbi went for her first ride in the push car with grandpa! She traveled well this trip, but it's only a short drive (a little over an hour). So, with such a great weekend behind us, I was looking forward to a good week! Did I mention I also went shopping and the Easter bunny is ready for our house!
Of course, nothing ever goes as planned. Mondays are so hectic, with Tim's night class and the added appointments we had for eye exams, the evening was chaotic. Charlie was whining more than usual and Abbi was ready for bed before I even finished bath time. This should be a good thing, except when I'm by myself on Mondays. She's exhuasted and Charlie still needs to finish his bath, pjs, and story time. She's wailing and by the time you get her to sleep and actually in her crib over an hour will have passed. Needless to say, Charlie looks like a prune on Monday nights!
Anyway, Charlie was up at 2 a.m. with a high fever, chills, and vomitting. Needless to say, I didn't get a lot of sleep after that. But, as for Abbi, she finally slept for almost five hours straight!!!!! She hasn't done that in over five months!!!! We're trying melatonin and perhaps that along with a lot of prayers is working. Plus, she's doing so much lately. She's crawling all over the place and she's pulling herself up and trying to cruise the furniture as well. However, she usually cries after she realizes that she's been standing for a few minutes. On Friday, she even climbed two stairs!
Oh, yeah, my blog title- Absent Again. Yes, I'm taking another day off to care for my sick son, who can't go to preschool while Daddy goes on a job interview. I was shocked to look at my absence history and realized that I've missed 9 days of school this year. And, only 2 of those days were due to my own illness or personal business! I can remember missing less than five days of work in an entire year! But, that's not going to happen after two kids. Luckily, I have great students and a supportive principal.

Well, I'm off to drop off lesson plans. Lucky sub, he/she will get to make masks for Romeo & Juliet today!
I hope everyone else is well!

The Beginning

After months of pouring over every blog I could find dealing with WS, I am finally creating my own. I suppose I'm tired of being on the outside and just looking in! Or, it could be the exhaustion I'm finally succumbing to after 15 months on this emotional roller coaster with WS. My beautiful baby girl was diagnosed at 3 months and I'm still struggling with some aspects of the diagnosis. Unlike some of you wiser parents, I immediately began googling Williams Syndrome the moment Abbi was tested. Why wait for the actual diagnosis? I couldn't help myself. I wanted to arm myself with as much information as possible. I wanted to feel like I had some control over this situation. But, as my cardiologist and pediatrician had warned, the internet only fed my worst fears and painted a bleak picture. UNTIL, I discovered the blogs and family websites of other WS families. It was then that I felt the first rays of hope.
Since then, I've been optimistic and thankful concerning Abbi. Well, when sleep deprivation strikes, I'm not always that optimistic, but I am definitely thankful. At first, I constantly wondered 'Why me? Why us' But, my loving sister helped me put those feeling into perspective with a simple response of 'Why not, you?' and my mother recovering from a near fatal illness added 'If you can't take care of Abbi, then who can? Who will?'
It has been those simple thoughts that have steadied me in this journey thus far. I've been blessed this last year with two wonderful miracles, Abbi and my Mom!
Now, that I've officially entered blogdom, I hope to use this blog to keep my family & friends updated. AND, I'll admit that I hope it brings my family connections with other WS families that can offer the wisdom of their experiences and the support & understanding that only they can offer.
In closing, I credit the loss of Baby Blake this last week for spurring me to start this blog rather than continuing to procrastinate. I was touched by the outpouring of love & support. On the outside looking in, I had followed his family's story and I, too, wept when I read that he had passed. My almost 4 year-old asked why I was crying, and I tried to gently explain that Mommy was sad for another Mommy's loss. Then, something wonderful happened, Charlie asked to look at all the photos posted. Then, he too was hooked, and we looked through many blogs, sharing in many families lives. That's when I knew that we, not just me, but my whole family needed this blog community.
Whew! I'm sure not all my posts will be this long, but I must admit that it feels great already!
God Bless and Goodnight!