Graduation, Smiles, and Such

On Saturday, May 21st, my dear husband completed his Master's Degree.  Normally he is not one to seek out recognition, but this particular festivity warranted celebration.  We discussed months ago whether or not he should "walk" at commencement.  At first he was hesitant--did not want to at all.  Then he slowly realized that yes, this is an accomplishment worth celebrating.  I was proud that he was proud of himself.  He also realized that if he decided to walk it would be the perfect excuse for his parents to come into town.  And they did!

Updated Pages

Besides overhauling my blog (which I have been wanting to do forever), I finally have begun to add individual PAGES across the top.  Please, please, please, feel free to link them, email them, post them on BabyBump or BabyCenter forums as you see fit for other new mothers or mothers-to-be facing a diagnosis of Down syndrome. 

I am not finished adding yet.  I have added a preface to Cameran's birth story before linking it to the original post as well as a page with answers to questions I have been asked recently on various pregnancy boards.  In addition, I am working on links to various celebrities who have personal connections to individuals with Down syndrome or who advocate for our enhanced children. 

I will leave you with a smiley rainy day photo montage of Miss Peanut :)

They Just Keep Comin'

It has really truly been occuring to me lately that Cameran is already far more capable than I see in the (unfortunate) few hours that we spend together from Monday to Friday.  For this I am both saddened and elated.  Saddened because I am not there to witness her small, but noticable achievements, but all the more elated that they are happening with or without Ryan and I present.


A few examples to serve my point:


On Monday, as I was dropping Cameran off at daycare, one of the two little twin boys who adore Cami saw her, and as usual cheerfully announced, "Hi Cammin!"


Cameran looked at him.  Cameran then proceeded to walk over to him.  Now don't get me wrong, Cameran has been walking, albeit shakily, for some time now, but apparently she is getting to be one brave girl at daycare.  Little twin lover's response was, "Look everyone, Cammin's walkin'!"  He was so excited for her, and my heart swelled.  And dammit, that's when I had to leave.  Oh, to be a fly on the wall.

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One recent afternoon, Cameran's teacher told me all about Cameran's new nickname...."Shadow".  Cameran loves her some Ms. Julie--apparently so much so that she follows her around the room and actually shows annoyance when Ms. Julie is not paying enough attention to her. 
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There have also been reports of Cameran participating in "parallel play".  While I know this is not totally wonderful, the fact that it is a step in the right direction is major!  We may never know how much time we "lost"- developmentally speaking -from her seizures, so this is an awesome step forward.  Before Cameran was content to observe.  Now at least she watches and tries to participate or at least go to the group of children and whatever it is they are doing.
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STEPS.
This mama hasn't been brave enough to get Cameran anywhere near steps.  On her own, she has shown no interest in climbing them.  PT has worked with her on occasion, and has said she has done well going up.  I decided to put this to the test...Last night before bedtime I decided to suck it up and see what Cameran's climbing skills looked like.  Girlfriend's got game.  Other than prompting her for the first few, she went to the top--14 stairs--all by herself!  Yikes.  Break out the gate!
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All in all this has been a great few months.  If we can get through the rest of the tooth explosion and jump on the self-feeding bandwagon prior to Baby G #2's arrival, then I will be in total bliss!

Today's Dose of Hope

I am a few days behind this story flying through the blogosphere, but I am linking it anyway...

This story speaks for itself. It is a testament to parents who are willing to let their children spread their wings and fly.

Go ahead.

Read.

Try not to cry (happy tears) at one more story of hope for our children.

Married couple with Down syndrome living INDEPENDENTLY

Playing Catch-Up in Pictures (Easter and Mother's Day)

I realize I never posted anything about our Easter. 
Ryan went out of town for his grandma's surprise 80th birthday party in Wisconsin.  I decided to stay home with Cameran and go to my folk's house as usual, especially since madre is still immuno-suppressed and basically housebound.

Saturday we dyed a few eggs at Nanny's house.  Sunday morning we went to church for a big breakfast, and then headed back to my parents' house before going to the airport to pick up Daddy.

This past weekend was nice and relaxing.  We took a little ride on Saturday to pick up Ryan's cap and gown. (Yay Master's Degree!) Sunday we relaxed, went to church, stopped by my parents' house briefly, and went home to enjoy the fantastic weather.  Ryan treated me to steamed crabs and steak kabobs on the grill--oh, and corn on the cob--one of my favorite combos!  Ryan begrudgingly played photographer to a cranky, teething toddler and his hormonally challenged wife.  Here are some of the results...

All in all, with my birthday sandwiched in between Easter and Mother's Day, the past three weekends have been a blast!

Q & A for Mommies-to-Be of possible baby with Ds

Here are some questions I have recently been asked on various message boards about what its like raising a child with Down syndrome.
1. With your daughter what challenges do you face?

She is our first child, and I believe that helps that I don't have an older child to "compare" her to. Sure, I see her developing at her own pace compared to "typical" (the PC term for children without syndromes or other exceptionalities), but that is par for the course with us. Cameran does things at her own pace, so patience is key. But we celebrate like there's no tomorrow when she hits a milestone because they are that much more special. 

http://www.ndss.org/images/stories/NDSSresources/developmental_milestones

We have been fortunate (overall) with Cameran's health. A main concern is that of various heart defects, all with varying degrees of severity. Cameran has what is called a small (barely measurable) PFO, and is monitored once a year. She has not had heart surgery, which sometimes is necessary. Although we avoided heart issues, Cameran did develop seizures around a year. She was treated vigorously for about three months, and has been seizure-free since, and also is medication free. Cameran sees various other specialists, including an Ear, Nose, and Throat Dr for recurrent ear infections (pretty typical), she sees a pediatric opthamologist and has a pretty cute pair of glasses that we wear occasionally for a bit of far-sightedness.

Any child with a developmental disability, whether physical, chromosomal, or other, is entitled to early intervention services. We are fortunate to live in Pennsylvania where they are 100% covered. This has never been an issue for us. Her physical therapist, occupational therapist, developmental therapist (helps with social skills and play imitation) come to our home or to Cameran's daycare. And yes, Cameran is in a regular daycare setting with typical children.

Are these challenges? I suppose to some. We just do them because it's what you do. Most communities have active Ds associations. Cameran has a playpals group that meets once a month for arts and crafts, singing, and snack. It's also a great chance for parents to get together and talk. Buddy Walks are great too.

Put it this way, most geneticists (yes we went to one after Cameran's diagnosis and we are fortunate to live 40 minutes away from Hershey Medical Center) will tell you that once a mother has a pregnancy (whether she gives birth or terminates is irrelevant) where Trisomy 21 or any other Trisomy is present, her odds statistically speaking automatically rise to 1:100 unless her age advances the odds to even greater. So I was 27 when I was pregnant with Cami. Then my odds (depending on where you get your info) were roughly 1:1100. I chose no testing, ultrasounds picked up nothing, and Cameran wound up being the "1" in that 1100. Did that stop us from getting pregnant again knowing that now our odds are 1:100? No. I am due September 9th. I suppose everything is simply a matter of perspective.

2. How has having a child with special needs affected your family's lives?

Well, I have no clue how it will affect our little girl who has yet to come. I do know that all of the families I know, both in real life and in the bloggy world, who have multiple children and one has Ds are happy and do very typical things. Some have an oldest child with Ds, others a middle child, and some the youngest. I don't really think about how it has impacted my family's life because we just do it. This is our life, and we are living it to the fullest. I know that there is a higher incidence rate of divorce for couples who have children with disabilities, and that it is important to still take time for one another, just as you would having any child with or without special needs. I also know that we have an awesome support system of family and friends. My husband's family lives out of state, but my parents are about 40 minutes away. It also helps that we are both in education. My husband is a guidance counselor and I teach language arts. Both of us have had special education training.

Personally, survival to me means not looking too far into the future, because that is when I tend to get overwhelmed with the "what ifs", much like mommies-to-be are doing when they are fretting about the "what ifs" for their unborn babies. I do know that it is not fair to "expect" this new baby of ours to "take care" of Cameran once we are gone. We are in the process of setting up a living will, and it all goes back to the wonderful support network we have in place. Looking back, hubby and I were in shock after the diagnosis, wallowed for 2 weeks or so, and then realized that life is too short to feel sorry that we did not "get" the baby we expected.  We prayed, we talked, we got our sh*# together, and moved to the place of acceptance where Cameran is not Down syndrome; Cameran has Down syndrome. It does not define her entire being, it is one facet of her make-up. We (and others) can choose only to see the T21, or to see Cameran, as a whole unique individual.

You will hear a lot about "people first" language in ANY special needs community. Some people are fanatical about it, some just go with the flow. I am more the latter, but will impress the point without trying to come across like a bi%#@ ;) Case in point: my friends don't come up to me and say "How's Cameran's Down syndrome?" or "Jen, yeah she's the mom with Down's kid..." Cameran is a person with Down syndrome, she is not a "Down syndrome kid". Also, in the United States, it is "Down syndrome". No "s", and lowercase "s" in syndrome. Not a big deal, just a tidbit.

3.  Is there a financial burden involved with having a child with special needs?

I always joke that Cameran's Ds diagnosis has actually saved us money. Despite the fact that she has umpteen doctor's appointments, a child with a diagnosis such as Down syndrome will receive supplementary insurance (Medicaid), or for a family who does not otherwise have insurance or has insurance that is not very good (for lack of a better term) Medicaid will serve as the primary. For example, we have Highmark BlueShield. It is ALWAYS listed first. Hubby and I have a $20 copay. Cameran is on this insurance. Without having Ds, Cameran would also have a $20 copay per office visit. Coupled with Medicaid (We use United Healthcare, formerly Unison), we pay ZILCH as long as her Dr is in-network. The only Dr. we have a copay for is her Ear/Nose/Throat Doc because we CHOOSE to go out of network bc the ones in network are not that great. Cameran had pneumonia in early March, went to the ER, and was admitted for 2 nights. Paid nothing.

I by no means am trying to glorify this, but between early intervention services and Medicaid, there is truly no financial burden for us. The only thing I purchase extra, and at this point, BY CHOICE, is Pediasure, to ensure she is getting extra calories and nutrients 'cause girlfriend is a long and lean toothpick.  Does that mean all families are this lucky? Probably not, but I am simply speaking from our experience here in Pennsylvania.

4. Has having a child with Down syndrome caused any relationship issues?

As I mentioned before, the hubster and I were in shock for a few weeks after Cameran's birth. We have amazing friends and family who were our rocks during this time. We have regular sitters (both family and friends) who watch Cameran so we get alone time. There is nothing that Cameran can't do that a typical child can, it just. takes. longer.

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By nature we want to "fix" things so we can continue with our status quo, whatever that may be. There are no certainties in life. Car accidents, tornadoes, plane crashes, etc., are all out of our control. We all want a perfect baby. I wanted a perfect baby. Cameran is a perfect baby, but in a different way. Any of us, Down syndrome or not, could go on to have our child be diagnosed with autism, which now has reached, according to Autismspeaks.org, the alarming diagnosis rate of 1:110. We can't do anything to stop that rate from climbing. Sure, depending on beliefs we can stagger vaccinations, or drop them all together if we are in the camp that vaccines are the cause (sidenote-I don't buy into that and it has been debunked but that is a whole other can 'o worms and a debate that isn't my cup 'o tea). I guess my point is, we can't take ANY test to predict whether or not our child will develop autism, yet we aren't afraid to get pregnant.

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Moving on, here are some quick resources to use while you are making the right decision for you and your family...


Here is a website that is very user-friendly and accurate--

www.ndss.org (This is the National Down syndrome Society)

The specific portion "about down syndrome" is a link that very objectively goes through some statistics, health concerns, and common myths associated with Ds. Also, the link to "My Great Story", shares stories from families and individuals with Down syndrome that covers various aspects of life.

My absolute favorite blog to follow is www.kellehampton.com.

Kelle coincidentally just attended the NDSS luncheon in NYC this past Wednesday and her most current blog post goes into candid detail about this event. She has links to the Birth Story of her daughter, Nella Cordelia, that chronicles her path to finding peace with Nella's postnatal diagnosis.

This link shares an article by Melissa Riggio, a young adult with Down syndrome.  http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

Finally, here is a clip from this week's NDSS luncheon, featuring Kelle Hampton speaking about the birth of her daughter and her family's postnatal diagnosis.