Tomorrow Reese will be participating in her first Special Olympics Regional Games. She will be running the 25 and 50 and participating in the long jump. I am beside myself with excitement! This mama has one major feeling running through her body right now and it is the best!
Well, I hope you all have a day where you are proud!!!
Reese and I saw her pediatrician today. Although the appointment had nothing to do with her feeding issues, of course her doctor asked. And I’m glad she did because we brainstormed a little. AND I am excited to report that we have a new consultation scheduled! We have tried it all. Therapies, assessments, scans, (you name it) to figure out why Reese is still not chewing. It has presented as an issue for both her nutrition and her safety. Heck, one of the main reasons I went back to school was to make sure I was doing everything I could to keep her off a feeding tube! Although I’ve been successful with her nutritionally the choking risk remains. And it’s scary. So needless to say, I am THANKFUL for this new opportunity and GRATEFUL to still have more options to explore.
Well, I hope you all have a day where fresh eyes give you new hope!!!
Reese went back to her ophthalmologist today and the appointment went great. Two months ago Reese was diagnosed with Exotropia. It’s a form of Strabismus or eye misalignment. In its’ simplest terms it is known as a wandering eye. I noticed it after she was sick twice in about a month. Luckily I had already scheduled her an appointment with her doctor so we didn’t have to wait a long time to be seen. At that time, her doctor said Reese was controlling the Exopropia very well but that she would need to start wearing glasses. And, if the glasses didn’t work, she might need surgery to correct it.
I’m sure you can imagine how worried I’ve been these past two months. I had Reese’s glasses ordered the day we left that visit and she was wearing them within a few days from that. She had about a two week transition period and then it was like she has been wearing them her whole life. PHEW.
Today Reese had her re-check her doctor said that she was doing so well that he didn’t feel he needed to see her again for a whole year. WOW! He said that her glasses appear to be helping, that Reese is still controlling the Exotropia very well and that he saw no need for surgery at this time. THANK YOU GOD!
I appreciate this doctor so much. He has been Reese’s doctor since she was just hours old. The first time he saw her was in the NICU and he has given me so much peace of mind ever since. He has never let me worry unnecessarily and makes sure that he only tells me things once he is 100% sure of what he finds, good or bad. So when he tells me something I trust him enough to I believe it.
Well, I hope you all have a day where you feel relieved!!!
Today is World Down Syndrome Day! And we all know that I have someone very special in my life who has Down Syndrome. My beautiful 8 year old daughter Reese!
March 21st is a global day of awareness that has been officially observed by the United Nations since 2012. How cool is that?!?! This date was chosen to represent the triplication of the 21st chromosome (3/21) found in individuals with Down Syndrome. Today I celebrate Reese and the amazing community of people with whom we share our lives.
I was told when I was 15 weeks pregnant that Reese had Down Syndrome. I did not grieve or cry. I did the complete opposite. My heart was immediately filled with hope for the future. And not just for my future or hers. From the moment that I was told that she had Down Syndrome I knew that Reese was going to change the world for the better. It was like a blanket of understanding that I had never felt before. And I have witnessed her work her magic time and time again ever since. She has softened the hardest of hearts and changed the most ridged of minds. I am so proud of her! This little girl of mine is smart, silly, kind and caring. Her compassion for others runs deep. She is a bright light in this dark world. She has taught me SO SO SO much and has showed me what real strength and perseverance looks like. And best of all, she loves me HUGE! Reese is an incredible human being and I am humbled that God chose me to be her mommy. It is truly a blessing and an honor.
I love you my Reesey Roo. You are my hero!
Well, I hope you all have a day where you celebrate EXTRA!!!
I got my first tattoo yesterday. It took the better part of 30 years to figure out what I wanted. HA! I’d like to say that isn’t the truth, but it is. I have wanted a tattoo for years but I could never figure out specifically what I wanted. An upcoming Down Syndrome Awareness tattoo event prompted my desire to really think this one out. Even at the event I was thinking that I would wait and get a custom design. But I fell in love with one of The Lucky Few designs and couldn’t get it out of my head. The triple “V” represents the triplication of the 21st chromosome found in people with Down Syndrome. And we all know that I simply adore someone with Down Syndrome! The word LOVE was something I had considered getting for many years. Because I truly believe it’s all we really need. And the arrow symbolizes how far you can go even after difficult life experiences “pull” you back. The incorporation of all these things really hit home for me. So, after years of being indecisive. I just wasn’t … and I went for it!
Well, I hope you all have a day where you FINALLY decide!!!
Today Reese started Special Olympics. She will be participating in the Track and Field Games this Spring. I am absolutely, completely and utterly excited! I’ve waited 8 years for this day … needless to say, I’m one happy mommy.
Well, I hope you all have a very special long anticipated wonderful day!!!
Last night was perfect. We went to see Aladdin the Musical at the Pantages Theatre in Hollywood. I absolutely love this theater. It’s old school Hollywood at it’s finest. And I honestly, I don’t think they have a bad seat in the house. I have sat all over that theater and have never been disappointed in my view or the sound. The venue is small enough to where you can’t help but feel engulfed in the performance. It is WONDERFUL. And exactly what I wanted for Reese’s first real theatre experience.
The performance itself was PHENOMENAL. The actors, the costumes, the sets … WOW! Libs is my theatre kid and she absolutely LOVED it. I was in awe, per my usual at the theatre. I am always caught up in the sights and sounds unfolding before me. Theatre makes me emotional to say the least. Having Reese beside me for the first time made it that much more special.
I mentioned yesterday that Down Syndrome has taught us that things don’t have to happen on a typical timeline. I wanted to introduce Reese to theatre for several years now, but I knew she wasn’t ready. I refused to push it too. Theatre is too special for that. I wanted her to be mature enough to REALLY enjoy it. And, fingers crossed, to fall in love with it like the rest of her KOOKY family. We might reach milestones and have achievements on a different timeline than others, but trust me when I say that we celebrate them a whole lot harder. Reese’s time is what we live by around here and I will tell you that it has made for some very special life experiences. And last night was no exception. At times I found myself watching Reese and watching the stage out of the corner of my eye. Seeing her reactions will go down as one of my favorite mom moments EVER. All of it … PRECIOUS! Her eyes lit up! Other than the few “scary” parts her eyes were glued to that stage. Yes folks, I have another theatre lover. And I couldn’t be happier!
Well, I hope you all have a day filled with magical experiences!!!