Oh my goodness, I cannot believe it’s been 3 months since my last post. Time is flying by so fast but we are here and life is good. Tatiana is flourishing but we have a little issue going on here . I’m going to show you a really cute pic then you tell me what’s wrong with this picture.
Do you see it? Yeah Tatiana is sleeping in her brother’s bed. Tatiana refuses to sleep more than 2 hours in her own bed. Let me give you a little backstory, Tatiana has slept with us since she was an infant, although she had her crib it just felt right that she spent most of her nights nestled peacefully between her parents. Then as she grew older she didn’t have her own room, just a corner in ours, so it wasn’t a big deal to keep her nearby. Now she is 3 years old and finally has her own side of the room that she shares with her brother, TJ and HRC doesn’t like it, not one little bit. She cannot get out of her room due to the babygate at the door stopping her, so her alternative was to stand at the gate calling out for someone to come get her. I have found her at 2:00 am crouched in a corner just waiting to be found…I felt so sorry for her I brought her back to our bed. So now her new thing is to climb into TJ’s bed EVERY NIGHT. He takes good care of her but the problem is how in the world can I get her to sleep in her own bed??? Please help, all suggestions are welcome. Thank you.
Houston, WE Have a Problem
Reality Bites
Some people may wonder if life is truly as wonderful as I profess it to be with Tatiana? They can’t understand how things could be so good when I have a child with special needs, well it is as I say it is and I know that we have been truly blessed! I realize that it could be so much worse, so I am ever so grateful that the minor issues and inconveniences we may have to endure due to Tatiana having Ds are just that…minor. With that said I must be honest and share that recently we have been faced with some of the realities that having a child with Down syndrome may bring. A week before we left New Jersey, the kids had their yearly physicals so they would be ready for school once we arrived in Florida. On the way here our pediatrician called and informed me that Tati’s thyroid levels were abnormal. She needed to see an endocrinologist as soon as we got settled. I thought we had dodged the bullet…I was hoping we would have no thyroid issues which I know are common for children with Ds. After receiving several recommendations of endocrinologists, we set about scheduling an appointment. Luck was not on our side however God was because after being told that there were no available appointments for the rest of the year at the renowned children’s clinic that was recommended, miraculously a cancellation appeared with the doctor we wanted to see and get this…we could bring her in two days later! I know that God can do anything but I am still overwhelmed at times when He shows us His favor in such a way.
We take her in, she is examined, blood work repeated, xrays taken and finally the call with test results came in….she would have to take thyroid regulating medication and it would be for the rest of her life. Her thyroid is under active so this medicine will regulate that as well as a recommended daily multi vitamin (which she already was taking) and Coromega, a Omega3 supplement that assists with brain development. Hell if that girl’s brain develops anymore…I need to run and hide! And so it begins, I’ve always counted myself blessed that she had very few of the conditions that are associated with Ds, but I now have come to the realization that while Tatiana is high functioning, she has Down Syndrome and with that brings stuff that I may not like or want to deal with. It is the common denominator that binds her to her Ds family at large. While this was not a family I ever intended to be a part of….I wouldn’t give them up for anything in the world. You see my angel gave me intro into a world of some of the kindest, most loving and accepting people I have ever met. The Ds community is such a welcoming family and I am so glad to call them my own.
Missed Me?
Hey everyone, I’m still here and doing well. I know you haven’t seen me around much lately but if you read my mom’s blog (and you really should) you would know I have been really, really busy! I moved to a new state and started a new school…I am a very happy little girl.
I live in the Sunshine State now and all this sun suits me…more time to work on my tan, LOL. School is so much fun, I have so many new friends and my teachers are wonderful. Even my bus driver and aide are the sweetest people ever. Here are a few pics of me leaving for school…don’t mind me (I’m acting like I don’t wanna go),I love school, I just want to display my independence from time to time.
So you can see, I’m just fine..a little ornery but otherwise good. I promise to make my mom post more, so until then take care…
Super Trooper
I’ve said it before and I’ll say it again, my Tatiana is a trooper! Every time I go into panic mode because she is experiencing something new, she make me look like a fool. She is moving through her first weeks of preschool with no sweat, not a whimper or a tear (at least not from her). She has rode the bus everyday with no complaint and her teacher and aide have been charmed by her very being. Only one snafu ocurred that was taken care of immediately, on her first day riding the bus, her driver arrived to pick her up without a car seat. I carried her onto he bus prepared to have her buckled in to a car seat only to watch in horror that she was being buckled into a ordinary seat belt. I protested but against my better judgement I allowed that to transport her without on but as soon as that bus pulled off I was on the phone with our school district informing them that they needed to find a car seat by tomorrow. When the driver pulled up the next day…he had a car seat. She’s had such a great time, they took trips to a local bowling alley where she rolled a gutter ball and visited Liberty Science Center plus on Fridays the swim and do all things water related. The summer session is wrapping up as of Friday but I can’t wait for the school year to begin and all the adventures she will be going on!
waiting on my ride
I'm patiently waiting
I'm still smiling but they are late
Finally they are here...about time!
And this morning I awoke at 6:00 am to her crouching in front of the tv attempting to play the Playstation…this kid
It’s All Happening
Tatiana had a great birthday! We went to the movies to see Cars 2 (which her brother TJ loved and she tolerated) then dinner and of course cake and ice cream. She was gifted with some nice presents but she is especially fond of the Bubble Maker (thank you Chris) which has brought hours of enjoyment. So I told you a few posts ago that Tati was going to Preschool in September, well it seems like September has come early this year because she starts school on Monday! I inquired with the school district about an out of district placement for a summer program and lo and behold I was informed that “we have a summer program”. Why was I told of this? Oh yeah, I guess she didn’t officially become the school districts responsibility until last Thursday. So transportation has been arranged, evaluations completed and the classroom visited…nothing left but Monday to arrive. And speaking of transportation, I am terrified to send my baby off to school let alone on a school bus but I think, know this will be the best arrangement for all of us. It will make her and her transition easier (sure it will) and I can’t leave work at the time the school day is over to pick her up, so it really is for the best. I knew this day would come, I actually looked forward to it but now that it has arrived, I think I would prefer her to return to infancy right now. She is so tiny and young still, I am not ready to put her on a bus that will drive away from me and onto independence..sigh. Then I am not sure I am entirely comfortable with her being in a multiple disabilities self contained class but I don’t have any options right now and I feel this is better than her getting no therapies or instructional learning until September. So we shall see how things turn out on Monday. And can someone please tell me how will I ever cope with watching her leave me?
I’ll leave you with a pic of her in one of her birthday gifts…I love this face, she is beautiful!
Angels Really Do Live Among Us
Today is my baby’s 3rd birthday! Three years ago an angel decided to come to live with us and our lives have never been the same. She is everything we needed yet nothing that we expected and I simply cannot imagine life without her. I have taken on a new appreciation for life through her eyes, please join me in celebrating my youngest one, HRC (for those who don’t know, HRC stands for Her Royal Cuteness) Empress Tatiana Michaela a very happy birthday! She loves Dora the Explorer so a Dora cake will be in her life today.
Do You Really Have To Go?
Growing up is beautiful but sometimes bittersweet especially when growing up means leaving people we have come to love behind. Tatiana is aging out of the Early Intervention program as of Thursday, she will no longer have in home therapy but now falls under the jurisdiction of our local school district (should I be afraid?) from here on out. We have been so blessed to have had four wonderful therapists in her life who not only pushed her to be her very best but actually loved her. They went above and beyond what they were paid to do, even when I couldn’t get TJ (Tati’s 6yr old brother) to understand that therapy was just for Tati, they graciously allowed him to take part in her sessions along with my grandson Tristan sometimes. They have showered Tati with gifts for birthdays and Christmases and even gifted her with clothing…brand new items that their own children couldn’t or didn’t want to wear. I could not have asked for better therapists for her, she deserves the best and that is what she got! God has answered my prayers for and about Tatiana every step of the way. This day has come so fast, I feel like it was only yesterday that she was having her first sessions, if you can call them that, she was so very young she could barely hold her own head up to the days when she understood what was expected of her but she was screaming her head off because she didn’t want to conform to whatever activity she was being asked to do, to now blowing kisses and giving hugs to them just for being there. Please know I am eternally grateful to you for the care you have shown to Tati, I am tearing up as I am writing this post, shedding the tears that I didn’t as each one of your said your goodbyes this week. Marjorie, Chris, Christine and Maggie we love you and will never forget you! You made a difference in our life, God bless you.
I’m Clearly Not Running Things Here
I was trying to take photos of My Summer Office and Little Miss Sunshine toddled in dressed in her full dress up regalia minus clothes. Mind you this was at 7:00am this morning, (yeah she is on that early) so I assumed she wanted to take pictures…..I assumed wrong, this is the face I got for invading her space.
I have no words but gotta love her!
Be Afraid….Very Afraid
Summer is doing what Summer does…heating things up and I am loving it! Tatiana is as busy as ever getting into all kinds of trouble. I have a question for the Ds families out there, what were your expectations for your child when you first were told the news of their diagnosis? I ask because Tatiana constantly amazes me with her skills and knowledge, I really didn’t expect all this from her but I am ever so glad she does rise beyond what I thought her life would be like. To make it plain, she is the busiest, most mischievous little girl I have ever seen. I cannot turn my back on her for even a minute or else I am in trouble. She runs (she ran smack into a table yesterday which resulted in a goose egg on her forehead), she jumps (chairs and couches are her specialty) and climbs EVERYTHING! She counts to five, she is a signing beast (only when she wants to though) and has mastered walking down the stairs alone (can’t you feel the fear in my words?). In other words, she is just a typical two and a half year old girl who is adored by her parents and everyone she comes into contact with.
Oops, I almost forgot, my baby is going to Pre K in September! She had her preschool evaluation last week and she did so well, I was so proud of her! She will be in an inclusive class with a typical teacher and a special needs teacher and will receive services as needed outside the classroom. I loved watching her interact with the children in her prospective class, she was so eager to play with them (they also were having snack time….) She is so tiny, I can’t see her going to school but time stands still for no man, so to school she shall go.
