Today we made a run to the local hospital to see my friend Sylvia. She is 39 years old and had a heart attack on Monday. She called me last night to tell me what was going on. She apparently had calcium deposits that were removed via angioplasty. She is recovering well, except for some major all over swelling. The doctors will be running some tests to rule out Kidney issues tomorrow. Sylvia is a single mom with a teenager and 9 year old daughters, so she is very worried about finances, insurance etc. Please keep her in your prayers.
Since we were at the hospital I decided to make a run over to the NICU because that is where Sydney spent the first two weeks of her life. I had heard through the grapevine that they had added a level 3 Nursery and that the Level 2 Nursery (NICU) had undergone some renovations. I stopped by for two reasons; To say hello after 18 months and let them see how well Sydney is doing and also to be sure that they knew about our New Parent program to come talk to new parents of babies with DS. I stopped at the delivery nurses station and they escorted me to the new NICU. One of our nurses Melissa came out with big smiles. She remembered us. She showed us the new NICU and it is WONDERFUL. We were in a room smaller than my living room when Sydney was born and now they have this HUGE area with privacy curtains, windows to the outside and a separate nurses station around the corner. It was practically a wing! I am so happy for them and the new parents to have such a great new facility!
Anyway, Susan was also there. These two ladies were the primary care nurses for us. I remember what a difficult time that was, seeing Sydney all wired up and on monitors. We knew ahead of time that she had DS, but I was not prepared for feeding tubes, Oxygen cannulas, monitors, wires, etc. The first time I was allowed to go see her in the NICU, she was so wired up, I could hardly see her face. She was 7 pounds (HUGE for a baby in the NICU) but she was SOOO tiny to me. (Anthony was 9 lbs, so she was little). I cried that whole first trip to the NICU. It got easier each time, and Susan and Melissa were SO wonderful to us. They were so tender with us. They see this everyday, but were compassionate with us being so new to it all. I especially remember Susan being such a source of information. She prepared me for procedures by telling me what to expect. She told me all about what was happening with Sydney and answered all of my silly questions as if they were profound. She even helped me with some nursing issues. I insisted on being there for every feeding even though I wasn’t allowed to nurse her. They called me at all hours of the night and watched me grog my way in for the feedings. They were so patient and understanding.
I don’t know how many babies they see go through there each year, dozens… hundreds?!? I do know that they have an amazing gift of compassion and love and the ability to touch the lives of all of these children and thier worrisome parents. They celebrated with us when we were ready to leave. As happy as I was to leave and take our baby home, I was sad to say good-bye. They gave Sydney 24 hour care and me 24 hour support. They are angels on earth and I am glad that I got the opportunity to go back and say Thank you! And to show them how our little baby is growing up and thriving! I also let them know what I do for DSACT and that they can call me when they get new parents of babies with DS.
I was a fabulous reunion and I HIGHLY encourage each of you who had a NICU experience to go back and say hello… and Thank you! Blessings!
Today I am going to take a moment to give a tribute to my hubby, Randall. Last Thursday I was vacuuming the carpet in the living room, grumbling to myself about how gross it has become. Between three kids spilling food and juice cups and adding in two big dogs, my carpets are toast. I steam clean them and the spots just come back quicker and quicker. SO, I mention to Randall on Thursday that I know that we are about to be unemployed and receive a severence package…. did he think that we could look into budgeting in wood flooring? (like the front room downstairs) Of course he said “sure”, and on Friday went to IKEA and bought the wood.
Little did I expect that when we got home Friday evening from IKEA and I started dinner only to look over and see Randall hauling the furniture into the front room. Me: “WHAT?!? We are going to do this NOW? TONIGHT?!? REALLY?!?” He said “YUP, now let’s get going”. We pulled up carpet, pried up carpet tacks, swept and started laying down flooring. My dear friend Dawn came over to let us borrow her tools and Friday night and all day Saturday we laid down wood floors. How cool is that?!? I am so thrilled that my husband can do things like this without giving it a single thought. The floor look great! He even tore out the fireplace and ran new cabling to move the TV to the other wall. He is building a new fireplace mantle. WOW! I am totally impressed. To top it off, he fixed the garbage disposal on Sunday! My jack of all trades… I am so lucky!
We have been busy seeing doctors. Today was Sydney’s 18 month check up and all is well. She got two shots, which she was NOT happy about, but otherwise it was non-eventful. We also saw the ear doctor last week. Good news is that her hearing is fine, she tested within normal ranges. The bad news is that she has a minor ear infection and was put on antibiotics for it. Because of the iritated fluid in her ears, she couldn’t receive a clean check-up, but the doctor said that all is well. Today we also had her eyes checked. She is fine there too. Woo hoo! The doctor said that her eyes are nice and clear of any issues and that in his opinion, her bright blue eyes would stay that color for the rest of her life. So, all is well in the world of Sydney! Whew! Just in time for the insurance to change to the temporary policy that no longer covers well check ups.
Sydney was cursed blessed with my straight and fine hair. Since she doesn’t have a lot of hair, she has been sporting a whale spout up until this point. Today I tried pigtails and they are SOOOO cute!!!
I know that it is January, but it is Texas and the weather has been SOOO nice lately that we have been wanting to spend more time outside. Since Syd is still not walking, I am not crazy about her crawling around the driveway, so we borrowed this CUTE little pink push-car from the neighbors. Sydney LOVES, LOVES, LOVES it! We are getting a lot of use from it, inside and out. She rides around the house (I push her) while I clean and do chores. Anthony thinks it is fun to push her and do laps around the downstairs areas. Here is a montage of Sydney in her new favorite toy!
Randall’s job is ending in one week and as part of the exit package we are given the option for COBRA insurance. Well, it is SOOOO expensive that Randall was looking for other options until he gets another job. So, he called an insurance broker and was told that NONE of his providers would accept an 18 month old with Down Syndrome. WHAT?!?!? Are you kidding me? Down Syndrome does not constitute huge medical claims. It can… just like anything else, but it is not a one-to-one correlation. Frankly she has been the healthiest child of the three. Randall was able to secure some temporary insurance that is sick-based. In other words, no well check-ups, just sick visits. That will work for the interim. The only questions that they asked were about our weights. WHAT?!?! Again with the assumptions! We fit the requirement, but that doesn’t make THAT criteria acceptable! I have always HATED insurance. I think it is such a racket… in the past I have been totally “inconvenienced” for a lack of a better term by insurance. I have lost doctors because of insurance changes, lost medications because they were suddenly deemed unworthy, not been able to get things filled due to errors in paper work, had Anthony’s delivery go up in price $4000 because he was born 8 days AFTER the new year… etc. but today I was truly, TRULY outraged.
I know our story is incredibly mild compared to others, so I will be thankful that we were able to secure something to cover us. I will also be thankful that there IS insurance, because those bills are truly outrageous and our portion is still only a small portion of the whole. And most of all, I am eternally grateful that we are healthy. (Aside from a small ear infection for Sydney. She is sleeping off the torturous doctor’s appt from today)
As you know working with new and expecting parents of children with DS is near and dear to my heart. Ever since I became a SAHM I have taken on the role of Coordinator for this program with our local Down Syndrome Association. (DSACT). If you have read my story, you know that my genetic specialist did a pretty good job delivering the news and we were in a good place relationship wise and spiritually. Unfortunately not everyone is so lucky, so it has been my mission to do what I can to help make the transition into the world of Down Syndrome as easy as possible. That initial step into the world of DS is scary and unknown and people deserve a light.
Well, recently I was asked to become part of the Board of Directors for DSACT chairing the Outreach committee. I accepted before I had a chance to ponder my fears and last week was the first board meeting. I can’t tell you how excited and terrified I was to attend that first meeting. I was excited to see what opportunities I would have to make a difference in my daughter’s life and others in our community… then terrified that I was taking on such a responsibility having NO experience doing this role. It reminded me of a project that I was handed by my former manager at Dell when I returned from maternity leave with Sydney. He gave me a project that was HUGE, ill-defined, 6 weeks behind schedule, VERY high profile, and he didn’t have any contacts or real information on what the project was. We just knew it was big and I needed start in a full sprint. I went home, cried, hyper-ventalated (spiritually) and never felt more like I was over-my head and accountable. I got over my fears by buckling down and jumping in with both feet. A few calls led to more calls which led to more meetings and soon I knew what the project was, what I needed to do, and where to go for resources.
So, I am now the outreach chair and I now know what my role is, who my resources are, what my budget is, and I am working on the plans for this year. As the title of this post states, I feel so blessed… why? I have a HUGE opportunity and although I have NEVER done this perse before, God has brought me a plethora of skills and jobs that have given me the tools to go and do this role. The difference between this job and the project at Dell is that my HEART is fully engaged here! I want to succeed not for my personal performance plan, but for the benefit of those around me. What a gift to get to serve my community. I once heard that if you do what you love, then you never work another day in your life. That statement is truly profound!
Anthony had three celebrations for his birthday, one with the family, one with the godparents, and one with his friends. Here is a montage of two of those (sorry, didn’t have a camera for the second one). Enjoy!
A friend of mine, Rhonda sent this to me and I totally botched it! Click on the Youtube video and take this test, It only takes two minutes. I would love to see your responses. BTW, don’t read the comments until AFTER you have seen the video. Like I said… I royally screwed this up! Apparently my observation skills aren’t what I thought they were! Yikes!
http://www.youtube.com/watch?v=URkDvGqpjuw
Call for desperate measures. Sometimes I wonder if I am the only one who gets put into these odd situations… You see, tonight we were at my son’s birthday party (yes, he had more than one celebration… that’s another post) and I took Sydney to the ladies room to change her diapers. Luckily the BIG stall was open which had the changing table. I changed her then realized that I REALLY needed to go as well. I have been drinking all day (just soda and water) and typical for me… I put off running to the ladies room. Well, it was a LONG way back to the table and my husband was in the game room with the boys so I wasn’t even sure if there was anyone left to hold Sydney… and after two pregnancies with children sitting on my bladder, I decided that I should push it and I would ”make it work”. Now bathroom floors just radiate yucky germs, so putting down a crawling baby was OUT OF THE QUESTION… I couldn’t leave her on the changing table… even with the “seat belt”, looks like trouble to me. So, I guess I will hold her while I “go”. I manage to hold her, handle jeans (with a belt) and do what I need to do. I even managed to wash my hands… one at a time then make my way back to the table. Sigh. Maybe I am the only one who does weird stuff like this. Oh, well it worked.
Thank you everyone for your input. The swing picture will be gracing the website by the end of the weekend. The decision is made and I have a work request into my Tech Support agent (hubby).
