Sunday, September 27, 2009

Traveling

So we are up in Ohio now. It's been an interesting visit so far. We drove all day on Friday, starting out at 7am on and arriving in Ohio at 11pm. It's supposed to be a 9 hour drive, but we had an appointment at UNC that took longer than expected and Marissa certainly didn't want to ride the whole way without taking a couple breaks to eat and look around a bit. I have to admit that it was quite lonely to drive without Bradley all that way.

Saturday was a whirlwind of a day as well. We wound up driving out the Beachwood for some delicious cookies from Cheryl & Co. We bought an extra dozen to auction off at Marissa's Mixer on the 9th. After our day of bee bopping around, we had life group. Basically a small group through my parents church Harvest Ridge Assembly of God.

I brought some of Marissa's favorite little toys to life group. While there I realized she was throwing a ball. As in an overhand throw, tossing her little ball onto the ground. Then, I decided to play a quick game of catch. Wouldn't you know she played with me?!? Some of you might not appreciate this story, but throwing a ball is actually a milestone that happens around a year. I've been asked by several people (therapists, doctors, etc) if she's tossing a ball. The answer has been, "not yet" But now I can say, "absolutely."

One other little thing she's figured out if giving five. I have to admit I don't think she completely knows what she's doing, but it very much resembles giving five, so I'm just gonna run with it. Other people seem to get a kick out of her giving 5 too, so why not encourage it? haha

So, there you have it. Just a couple of busy days to add to our list. All in all, it's so nice to be with family and to have an extra pair of helpful hands. Marissa is very excited to be with everyone and is eating up all the attention.

Reblog this post [with Zemanta]

Sunday, September 20, 2009

Guess whose 1 on 9/21?!?

Happy Birthday to Marissa Joy!



Marissa has had quite a year! Some of her accomplishments (aside from being the cutest red headed baby ever) include: 4 little teeth, learning to say a variety of consonant vowel sounds (mama & dada are high on that list), rolling over, and sitting up independently. Within the last couple of weeks she's learned how to put items into buckets, place balls onto a spiral ramp, and a very low crawl. She's a great little eater and will try pretty much anything I put in front of her. I've found her favorite vegetable to be spinach and blueberries and apple sauce are strong competitors for the fruit category. She's still nursing throughout the day because my stubborn little girl is still refusing a cup. She'll get there though, I'm confident of that.

Overall, the Lord has blessed us with little Marissa. She's a lovely little girl, to say the least, and I'm thankful just for knowing her and for being so very blessed by all the wonderful people we have met because of her.

Thank you to all our friends and family that have made this last year unbelievably special. Thank you for your words of encouragement and prayers and kindheartedness. We love you all!

Reblog this post [with Zemanta]

Snoring Baby

video

You have to be very, very quiet but if you are you will hear quite a loud grumble from little baby. It just makes me giggle so I thought I'd share.

Croup

Yesterday we spent the day at Cape Fear ER. Marissa was up all night with a terrible barking cough. I have a cool mist humidifier so I had that going and continued to check on her periodically, hoping that it'd get better. Turns out it didn't. Around 10am she was having a very hard time breathing, lots of wheezing and grabbing at her chest. After calling our Primary Care Manager (PCM), I was told that wouldn't be able to see her today. sigh...

So, I opted for the local ER. We spent a few hours there, just sitting around, people watching, until our number was called. Turns out Marissa needed a steroid injection, something not too uncommon to help alleviate croup symptoms. We were also given an over-the-counter prescription for steroids as well.

We were seen by a Physician's Assistant (PA) who absolutely loved Marissa. He just couldn't say enough good things about her, which thrilled me, of course. He told me that she was having such a hard time breathing, more so than a typical child with croup, because she has low tone throughout her body. I knew she had low tone, as that's a characteristic of Down Syndrome, but I didn't really relate it to her ability to breath. Anyway, the injection helped, but the OTC meds seems to be making a larger impact.

She's doing much better today and we are still on schedule with her helmet therapy. Today is 4 hours on, 1 hour off for the whole day. She's not thrilled with it, but it's getting better. I think....

Reblog this post [with Zemanta]

Saturday, September 19, 2009

What would happen if people with DS ruled the world?

I am borrowing this segment of an article from NADS Please use the link & read the article in it's entirety...it's well worth the time and it's sure to make you smile & it will definitely enlighten you to some of the joys of Down Syndrome.

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

Reblog this post [with Zemanta]

Friday, September 18, 2009

Helmet Therapy

So Marissa got her helmet today. She did fine when we were at the office. They had to take it on & off several time to get it to fit correctly. She fussed a little, reaching for me to hold her and such, but nothing outrageous.


Soon enough, we were out on out own. The 1st week is considered the conditioning phase where you are basically getting the child comfortable with something on his or her head. Part of conditioning on the first day is the helmet is worn an hour on and an hour off all day. You gradually increase throughout the week until the helmet is worn 23 hours a day/7 days a week for 3-4 months. She will get an hour break each day for hygiene.

So anyway, when it was my turn to take the helmet off I got a HUGE "pouty" lip. I thought, "No big deal, just a quick moment of discomfort and it was over with." Well, then I had to put it back on an hour later. Wouldn't you know she screamed the loudest scream I have ever heard from her little lungs? She did NOT like me putting that helmet on. I yanked it off and she was fine. Well, I had to do it. This is what people warned me about... I tried again, she screamed, I gave it a little push & it popped right into place. About 10 seconds later she stopped crying and she was fine with a little bit of cuddling. The helmet stayed on for another hour and that's how the rest of our trials went. Put on, scream, hugs & kisses, and she was fine.

So now with the helmet on her head. It's a VERY tight fit. I can already see red marks on her scalp which will need to be addressed when we go back next Friday for another fitting. And although she's only wearing the helmet an hour at a time right now, her head is getting unbelievably sweaty. I mean her head is soaking wet when I take it off. I didn't notice while we were at UNC, probably because Marissa was eye-level with me on the physician's table, but the helmet is just about flush with her eyes. I, personally, think that would be very distracting and make it very difficult to see what's going on when she's playing on the floor.

I plan to call them Monday to see if they need to see her sooner rather than later to make any necessary adjustments. A week seems like a long time to go with something digging into her little scalp. I pray she gets used to this and that I do too. From everyone I've spoken with it will get easier for both of us. I guess it's 1 day down, 4 months to go.

Reblog this post [with Zemanta]

Friday, September 11, 2009

Explanation

So, I set up a new blog called Marissa's Marchers. This is a 2 part blog. First we are trying to raise money to pay for Marissa's positional helmet therapy which is something our insurance company doesn't pay for. Our family has agreed to do a silent auction to help us reach the $3500 goal.

Donations for Marissa's positional helmet therapy can be made using the "Donate Link" in the right hand margin of either blog.

The 2nd part of Marissa's Marchers is the name for our Buddy Walk group. Since I'm not overly creative I figured I'd use the same name for the silent auction efforts. Anyway, each year we will raise money to raise awareness about Down Syndrome and the funds will go toward the fund raising efforts for the Buddy Walk.

Please know that the money we are collecting through "Donate" and the silent auction will go directly to benefit Marissa. If you would like your donation to go directly to Triangle Down Syndrome Network for this year's Buddy Walk. Please donate via Buddy Walk TDSN

Reblog this post [with Zemanta]

Thursday, September 10, 2009

One day at a time...

So, today was crazy. I got to work late, had 3 meetings, then I was off to work w/ a kid & found out I had to take my exam no later than 10:30 & my kid was scheduled for 10. So I had to re-arrange that schedule...race to get to the testing center. Race to take the test so I could work w/ my kid by 11:45. I scored 74%, which is AWFUL for me.

Then I came home & had to take advantage of Marissa being at school and cut the lawn. That was a dirty job so I had to shower for a 2nd time today. With the little spare time I had leftover I created another blog, Marissa's Marchers, to help our efforts to raise funds for Marissa's helmet therapy. It's still a work in progress because then Marissa came home and she needed to EAT. I fed her, then we rushed out to my FRG meeting. That wound up running late, which meant I wasn't able to go to Food Lion to pick up their donations. i called & I can come get them in a week or so because the woman donating is on vacation starting tomorrow (go figure!)

THEN, as I am pulling into Riverbrooke, a beautiful Husky ran out in front of my car. I could see clearly that it was wearing a collar (and being the sucker that I am) stopped to see if I could read the tag. The dog was all jazzed up and hopped right into my car! I got the phone number off the collar, called the owner, and they came to get Maggie (that's her name) after about 15 minutes.

Whew, so I had to finished the night with some e-mails, a quick blog, and tomorrow we'll be up early for a memorial service for 2 fallen warriors. It's time to say my prayers and go to sleep

Reblog this post [with Zemanta]

Sunday, September 6, 2009

The wrong idea? Who me?!?

So, I had a little rant the other day about this whole mess with insurance. I am still frustrated with the system, but I'm regretting that I believe I'm turning into quite the complainer. Truth be told, Marissa (and my life as a whole) makes me very happy. She does something fun or silly everyday and there's just no way I would have life any other way. Yep, there's some struggles along the way, but who doesn't have their own little monsters hiding in a closet somewhere. Basically, we've all got something we are dealing with, Marissa's is just a little more visible to everyone else. But with prayer and faith she'll succeed just like the rest of us do. God created her in HIS perfect image after all. And although people with Down Syndrome have bad days just like the rest of us, it seems to me that they have a little bit better grip on treating others with kindness, being sincere, and generally loving life beyond what typical society appreciates. The more I read about Down Syndrome and the more I learn about Marissa I seem to think it's us that have the wrong idea about life.

Reblog this post [with Zemanta]

Saturday, September 5, 2009

Helmet Therapy

Marissa has Down Syndrome and a repaired heart defect. She had open heart surgery when she was 4 months old at the Cleveland Clinic in Ohio. As a result of her low tone (a characteristic of DS) and her congenital heart defect she was a very weak baby for the first 5 months of her life. She also has a condition known as torticollis which impedes her movement towards the left. It is because of these various factors that she developed a flat spot on the back of her head, known medically as Plagiocephly.
I have been attempting to treat the flat spot with physical therapy, early intervention, and head massage in the home.  After receiving a referral to a cranial facial specialist and diagnosing her plagiocephaly as a moderate case, we were prescribed positional helmet therapy.  If not corrected, Marissa could develop spinal complications or vision problems so we feel very strongly that this needs to be corrected. 

We were all set to go, signing in at the orthotetics desk and I was told that our insurance didn't cover the therapy and that it would cost us $3500 to go through with the treatment. Plagiocephaly has a limited window of opportunity in which to treat it because it is only effective while the head is still forming. Essentially, due to this limited window, we had to act quickly and move forward with the treatment.

We made the 1 1/2-2 hour drive back to University of Chapel Hill yesterday to have Marissa fitted for a helmet. She will need to wear it 23/7 for 3-4 months. She gets an hour everyday for hygiene. She will receive her helmet on Sept 18th.

It is weeks like this that I feel like I have to be "on" 24/7 to advocate for Marissa. From being told that she's not eligible for speech because she's not hearing impaired (forget the fact that she has cognitive delays and impairments) to a $3500 hospital bill that's considered to be cosmetic. I wonder why the system makes it so difficult to obtain the services we need for these little ones. It makes me all the more concerned as to what will happen if I am not around to fight for her. Bottom line, I shouldn't have to be fighting like this. Not that I think we are entitled or anything but research shows proven results with early intervention, shouldn't it just be common sense to provide it to special needs kids in order to help them become successful, independent individuals in the future?

Reblog this post [with Zemanta]