January has been a busy month for appointments (yes, already!). We are in the midst of follow-ups for some concerns from the fall, and starting up new concerns to lead us into February. You would think I'd start to catch on that there will always be some new concern...but I repeatedly catch myself daydreaming of a lull :)
We started the New Year on the 4th with one of Parker's monthly RSV shots-- which, this time around, caused the highest fever Parker has ever had (101.6), leading to a stressed out Mommy and Daddy! We know how important these shots are, though. Most pediatric offices take a look at their patients, and determine which kids are at the most risk of complications if they were to get RSV. RSV is particularly dangerous for kids with heart defects, Down Syndrome, etc....so we have to do it. We are slightly nervous about the next shot, as each one only lasts for 28 days.
The next week, we headed to Ophthalmology, which was a surprisingly stress-inducing visit. I expected to, at worst, get a slap on the wrist for not being able to get P to wear his glasses more. The Doctor, who we love, agreed that the smallest glasses with the smallest strap are too large for him-- which isn't something we can really help. She is VERY concerned with the fact that without the glasses, Parker can *maybe see about four feet. So, we have been told that if Parker isn't wearing his glasses full time, which is four hours or more per day, then he will need to come in once a month to have contacts put in and removed. Contacts.......for a baby. Luckily, they would just be until his glasses fit him better, but still--- yikes! Neither Matt or I have experience with glasses or contacts, so we are pretty intimidated.
This coming week, we go back to the ENT and Audiology to retake the behavioral hearing test and get checked out again. The last visit for this was miserable, so we are hoping for an improvement. I don't know that P will do any better on the hearing test-- turning towards sounds (and processing them) seems to be difficult for him. We expect to hear that Parker will need tubes ASAP, and will likely need to go under general anesthesia for an ABR hearing test. Here's to hoping these can both be done in one shot!
We had such a good week in Ohio! We started off the drive after a few inches of snow on Sunday--and a few more stops than usual. Car rides are getting harder as Parker gets older. With our long daily commute to and from work/daycare, he gets restless in the car more often, and it is getting increasingly more difficult to entertain him without stopping. I even tried rigging my iPad to the headrest of the seat he faces and played a movie-- with no luck. But, we made it, and were so happy to be with everyone.
We had a great Christmas Eve and Christmas day-- getting lots of great pictures and memories. Parker got in some serious snuggle time with his Nonna and Grandpa. His most favorite part of Christmas was playing with his bows! Forget presents....give him a good bow and he is all set!
Thursday, we all made separate treks to Kentucky!! With Parker having a nasty cough, we didn't want to stay the whole day, so I took him to see Ms. Mary and Ms. Trina near our old stomping grounds! Matt went later in the evening to spend time with his good friend from his Kentucky job, Steve. It was so nice to see everyone, and nice to be over the river for a short while. It is amazing to look at Kentucky now after having spent time in Chicago. They are so different!
That afternoon, my Uncle Doug and cousin Lisa came in from New Jersey! It is always so fun to be surrounded by a little Jersey! It was so nice to see them and all just relax together- I think everyone needed it!
Friday, Matt's parents came in from Cleveland, which was so nice!! I always love having both of our parents under the same roof. Brody, Molly, and Chase all had fun chasing each other around, and as usual, Parker got all the snuggles :) Just like other special occasions, I envision Parker filling up his "love bucket" for those hard days at therapy or doctor appointments.
Saturday, we went to sushi with Grandma and Grandpa Preis, and then headed home! It is always so hard to leave everyone. This year, though, it is nice to go "home" to a house we love with room to put everything away!
While I am sad that Parker isn't the teeny tiny baby he was last Christmas, I loved seeing him interact with everyone, and can't wait until next Christmas when he is truly a toddler and starts to get really invested in seeing family and Christmas morning!
This evening begins our winter break! I am beyond excited for two weeks of snuggle time with my boys. To me, Christmas is a time of giving and all of the awkwardness and warm-fuzzies that go along with it. I really enjoy watching the kindness that happens between people! We were SO excited to find Parker sitting up in his crib this morning, patiently waiting for the last day before break to begin.
Today, I witnessed an adult woman shopping at Walgreens. I tried to resist startling her in her process, but I was so humbled by her independence. It gave me so much hope! She was shopping around the store for things she needed, checkout out by herself, and double checked her bags to make sure she had everything she needed. One of the store managers was gracious enough to check on her occasionally and make sure she had everything, like batteries for an appliance she picked up.
So often, I catch myself holding my breath in these situations. I am so afraid that one of these times, I will encounter the hate or ignorance I have heard about from members of the DS community. I always. guiltily, find myself reflecting with surprise that it was a happy and positive experience.
It was exactly how I needed to start my break!
Here is another warm-fuzzy video of a sweet boy (man!) getting accepted into Clemson's LIFE program.
http://www.youtube.com/watch?v=apvWbDChh7E&edufilter=28DoOm6zbDnJZkHS9nSWaQ
Over the last year, this blog has evolved into being a therapeutic place for me to share the unfiltered goings-on of our family, but it originally was made to share daily life with Parker with our families! One of my most favorite things that Parker has started doing is one of those that I will LOVE looking back on someday. He has started to race (aka: army scoot) towards people when they come into the room-- especially people he knows. He has also really started to recognize entries to common rooms...and heads for those! His play room is one that he has recently learned how to get in and out of to find playmates. One of my favorite things is hearing him scooting towards and through the door into the kitchen to find us!
As always, I love him so much my heart hurts!
We made it through Matt's second headache since Parker was born. For those who don't know, they are a very rare type of headache that usually lands us in the ER at least once, or in this case, twice. It is so hard to watch him hurt like that. Selfishly, it is also hard to manage "life" when he gets them. In addition, we both got sick afterwards, so we are pretty exhausted and very much counting down to winter break! I am very much thankful that Matt will be going to a headache clinic in January to hopefully get some preventative and abortive steps that don't require an ER visit!
Parker, as always, was a champ when we basically required him to sit with me or in his stroller at the ER. I spent a lot of time wondering if this would be the last time he would really be cooperative in that situation-- he is getting more and more mobile by the day, and more and more determined to get where he wants when he wants :) This obviously makes us SO happy, but is also tough when you are in a germ-laden hospital and can't allow your 1 year old to crawl all over the floor!
Here's to hoping we go without any more illness for the remainder of the winter!
Both Parker's birthday celebration and his first Thanksgiving were just perfect...and I will cherish the memories from both!
His party went off without a hitch, thanks to the help of our families and great friends! I was just about in tears, as corny as that may be, when everyone sang to him. I know it is just a 1st birthday party, but for me, it was a celebration of PARKER and all of the joy he has brought into our lives.
Here are the videos :)
Taste of Cake
Happy Birthday!
Thanksgiving was wonderful, too! Great food, lots of little ones running around having a blast together...you can't ask for much more than that!
This day or so last year was my breaking point and included some of the most painful hours of my life. I was finally feeling like Matt and I had come to terms with the Down Syndrome diagnosis when everything sort of crashed around us. The evening I was sent home from the hospital without my baby was a horrible experience. There is nothing to quite describe the pain I felt (physical and emotional) while being rolled out of the nursery and then hospital without my little boy. In addition to the pain, post-pregnancy hormones alone are a cruel torture. They are 3483954743 times stronger, more irrational, and just plain nuts than anything I felt during pregnancy. Yuck.
That night was restless...getting up every two hours to pump and making the call to the hospital to check on Parker was exhausting. He wasn't getting any better, and I was having major issues with being away from him-- but couldn't physically stay at the hospital while recovering from a c-section.
The next day, we found out Parker would need an IV in his head to get fluids to his body...which would require NICU time. We also found out about him having Klinefelter Syndrome. That last diagnosis was the last straw for me. I broke down so badly in the hospital that the doctors and nurses sent the social worker back to make sure I was okay. I had no idea what this meant for Parker, and even said aloud..."What kind of life is this baby going to have?"
As with any traumatic event in life, part of healing is "reliving" the moments so that you can move on and heal. That day is still one that I am working myself through memory by memory. It seems silly to feel that way when so many mommies go home without their babies, or have terrible situations to deal with, but it was traumatic for me nonetheless.
Even though we have our tough days, I am starting to see exactly what kind of life Parker has and will have. He is loved, supported, and protected by so many people. There is never going to be a day where I don't have a fleeting thought --pleading and begging God to make his life easier, but I will do everything in my power to give him every opportunity I can.
I am so thankful that I am the one lucky enough to be Parker's Mommy. He is the most beautiful boy in the world...
