A Busy Week

•January 20, 2011 • Leave a Comment

Its been a while since I’ve had a new post, but we have been crazy busy around here.  Elena had her neurology appointment and everything seems to be okay right now.  The neurologist wants us to take her in for an MRI because they think she had a partial seizure.  I’m not excited to have to use anesthesia, but we have to do what we have to do.  I’m comforted by the fact that we don’t have to go in until March, so it isn’t an extremely urgent situation.  We were also in to see the endocrinologist this week and her thyroid levels are borderline.  We had another blood draw and are now waiting to hear from the doc.  Depending on the results we may or may not start her on a thyroid medication.  Because she has DS, we will be following her levels closely, but all in all, its been a pretty manageable week.

We started Elena in an infant group this week and she loved to be around all the other babies.  She was the youngest one there, but I am hoping that her being with the other kids will help motivate her in her development.  We are working on sitting up and crawling.  Her sitting is improving and when I manipulate her legs to crawl, she keeps her head up high and pulls with her arms.  All the other parents at group were amazed with how alert and motivated Elena is, and that gives me great comfort.  I was a little leery about going to group because it is hard for me not to compare her to other kids that are the same age as her, but I found a group of parents who were there to support each other and celebrate in each child’s successes.

Spiritual Guidance

•January 11, 2011 • Leave a Comment

I made the first step and asked for help.  I made contact with the Pastor from the church we attended while I was growing up.  I felt the urge to speak to someone neutral to this situation and made the leap.  Thank you Pastor Bob, for you have helped me to see that there are larger things at work here, and my sweet baby is a blessing.  I have always known that she was a blessing to me, but I had this uncontrolable need to blame myself for this situation.  Like I am so powerful that I could cause her to have an extra chromosome.  But, alas I realize that I am not.  Go figure.  I am feeling more at peace now and seeking help from the God I grew up knowing and loving.  I have found my way back and we will move forward.

We had a follow-up appointment with the audiologist yesterday.  Elena has lots of fluid in her ears, which really isn’t a surprise given all of her congestion.  We will see the ENT in February to decide what to do about the fluid, but chances are that she will get tubes.  We will then return to the audiologist so that they can test her hearing minus fluid.  We go to the neurologist on Thursday because of the seizure and see what they have to say.  I am still hopeful that it was a one time occurance and we won’t have any more.

I am going to attend a meeting on advocacy tonight.  I am going to learn how to be an advocate for my daughter, so that she is given every opportunity available to her.  It will be a long drive, as there isn’t anything readily available in our area, but I will drive to any lenghts to give her what she needs.

Ridiculously Good Looking

•January 5, 2011 • Leave a Comment

We had a bit of a scare last night and ended up in the emergency room.  The doctors think Elena may have had a seizure but can’t be 100% sure because the episode ended before we got there.  We will now add neurologist to our ever-growing list of specialists.  I am hopeful that it was a one time occurence and we won’t have to go through that ever again.  Fortunately, she has been fine today, just a little more sleepy that usual.  She also got lots of cuddle time and mommy didn’t make her do as much exercise as we usually have to do.

On a happier note, I have a baby Zoolander.  Elena refuses to roll to her right.  For those of you who don’t understand my references to Zoolander; run, don’t walk, to your nearest video store and watch immediately.  If it weren’t for mindless comedies like this one, I’m not sure how I would make it through.  Anyway, she is perfectly capable of this task I want her to perform, she simply just doesn’t want to.  I am beginning to see just how stong-willed my sweet baby is and as much as I want her to roll in both directions I also don’t want her to lose her determination to do things they way she wants to.  I am just trying to find a happy medium between the goals I have set and her shear determination.  And, I think she knows that all she has to do is give me one of her half-smiles and she’s got me wrapped around her finger.

A Big Fat Mess

•December 27, 2010 • 1 Comment

My house is trashed and my kids are happy, so all in all I would say it was a successful Christmas.  The best part of all was being able to spend time with our family and not having to rush about from here to there.  We stayed in, we ate, and we played.  I am now looking forward to a new year with new hopes and dreams.  I am going to stop comparing Elena to every other baby we come in contact with and just simply enjoy her.  I am going to enjoy all three of my children for who they are.  I am going to quit looking to the future because who knows what it will bring and if I continue to dwell on it then I won’t be able to enjoy the here and now.  I am going to stop being so angry.  My anger and frustration with this diagnosis has not been good for me or for my family.  It is nobody’s fault that Elena has Down Syndrome and my being angry isn’t going to change it.  I am going to quit blaming my self and I am going to stop carrying around this guilt that I have somehow caused my daughter to have DS.  Really, I am still doing this, and it has to stop.  I am going to make crafts with Ava and read Tales of a Fourth Grade Nothing with Caden.  I am going to dance with both of my ballerina’s in their new tutu’s.  I am going to sing at the top of my lungs no matter who can hear.  I am going to breathe deeply and just stop putting so much pressure on myself.  I am going to start to smile again.  And most importantly, I am going to reread this post over and over again so that I will actually hold myself to this.  Promise.

Holiday Blessings

•December 21, 2010 • Leave a Comment

This week has already been a crazy one and its only Monday night.  Our pediatrician called today with the results of Elena’s blood tests.  Her blood count is normal — hooray!  Her thyroid, T4, level is normal, but her TSR hormone level is elevated, so we now will add the endocrinologist to our list of specialists.  But, in all likelihood she will just be put on medication to regulate her levels.  So now, I am going to put my worries to rest because I have too much to get done this week.  We start a new round of appointments once January hits, but we don’t have anything to do but enjoy the miracles of Christmas until then.

Caden and Ava still believe with their wide eyes and open hearts, and I wish that I could figure out a way to bottle it up and use it throughout the year.  To be able to believe in all things good and true and pure.  I have managed to put away my tears, at least for the time being, and I am going to just be.  I am going to let in all the good and true and pure that surrounds me and my sweet children and not worry about the what coulds or what ifs.  I am slowly letting go of my need to control everything and everyone because I realize that it is just unrealistic and I am simply driving myself crazy trying to do so.  I will lead by example.  I will learn from my children and at the same time teach them. 

I hope this Christmas that you all find the good and the true and the pure in your lives.  I have been blessed with so much and it is time for me to start enjoying it.

Time to Rally

•December 14, 2010 • Leave a Comment

Well, I have been trying to enjoy this Christmas season because I have been blessed with three fantastic children but somewhere lurking in the back of my brain are those fears I can’t seem to conquer.  Everyone tells me to give it time, but I just wonder how long will these fears overcome me?  Elena will be six months in just a couple of days and I can’t believe how quickly the time has gone.  We have her six month check up tomorrow, which I am nervous for.  Along with a blood draw to test her tyroid we have to check her blood count to make sure she is clear of luekemia.  Along with her extra chromosome come added worries, such as childhood cancer, that we will now begin to monitor on a regular basis.  Our physical therapist also wants us to discuss her head development with the pediatrician and she may have to wear a helmet to help correct some other developmental issues that she is having.  I haven’t told anyone about the potential need for a helmet until now, other than my husband, and just typing this makes it all to real.  Not that the helmet is earth-shattering but it is just one more thing.

All that said, I have to rally.  My kids need me.  While I don’t expose them to my fears, I know they can feel the stress that comes off my body in waves.  I really do cherish my days with my sweet girl while it is just the two of us.  She is happy and full of smiles and so what if she may need to wear a helmet.  It won’t make her smile any less sweet.  As she sits in my lap and stares into my eyes I swear she can see right into my soul.  She is a special girl with an ability to make my heart swell with a simple half crooked smile.  So now, I am off to rally myself because I really am not sure if my fears will ever go away but I can’t get this time back and I am going to enjoy every breathtaking second of it.

Where did my cup go?

•December 8, 2010 • Leave a Comment

So I made the decision to be more positive about everything and then almost immediately got thrown off my game.  We went to a Christmas party for families and friends of people with Down Syndrome and it was not at all what I expected.  All of the other things that I have been to have been positive and uplifting and this was far from.  I got so upset by what I saw that I have gone in to a gigantic funk and am trying to dig myself out.  I had met a young woman a couple of months ago who is so high-functioning and wonderful that this is what I decided Elena would be like and after this party I have begun to question what our reality will really be, and it scares me.  I feel guilty for seeing these other kids and not wanting life to be that way for Elena.  So, if anyone has seen my life is half full cup, could you please send it back my way?