Saturday, September 29, 2007

Move Update

It has been almost a week since we have been back from our house hunting trip and things have not slowed down. We did find a house and on our way home from the airport the Realtor left a message saying the owners had excepted our offer. That was a great relief. We are excited about our new house. It is has more room than our current house but not a big yard like we were wanting but we sacrificed that for what we are hoping is a better school district for Abbey. We spent the first day of our trip visiting schools and meeting with administrators trying to figure who will give Abbey the best services. In the end we decided on the Menominee School district which is in Michigan. Abbey had a good time on our little vacation, especially our trips to the Culver's, which has great ice cream. In fact every time we would be in the hotel and we would tell Abbey to get her shoes on because it was time to go she would run and get her shoes and do the sign for ice cream. It was quite funny!

While we were on our trip we met with Kim's boss for lunch. They talked a little shop and she is excited about her new job and the new challenges ahead of her.

Since our return home we have been getting things in order. I could give a long, long, list of things but I might run out of room so I will just say it is a long list. Our biggest concern is getting all the paperwork needed for Abbey (including an updated hearing test)so we can hit the ground running when we arrive in Michigan. We also hope to have new ear molds made and an appointment with the ENT. Hopefully having all of this done will make the transition easier not only for her but also for us.

As a parent you are always learning something new. The other day I was telling Abbey's new audiologist a little about her and we were discussing who was responsible for covering the insurance on the hearing aids. She said we were responsible for the coverage and that we should look into having it covered on our home owners policy. This was new to me and as it turns out is better than what we were doing.

Monday, September 17, 2007

Light Postings

I haven't posted much lately because my mother has been visiting for the last several days and I have been trying to get some things done around the house while we have extra hands, as well as try and spend some time with her. By the end of the month we hope to have a contract on a new home and have our current house on the market.

The kids are doing great. Abbey is adjusting to her new school and they have some really great things to say about her. They have a little notebook they send home everyday telling us how things are going. They don't write in it every day but almost every day.
Last week they told us that every day each kid gets to choose a job and last Friday Abbey chose the help with the garbage (which seems to be a favorite among the kids). The teacher said she did a great job. She went out into the hallway and got the garbage can (which is on wheels)and pushed it inside all by herself. She then took the lid off and sat it down in the correct place, apparently early in the week she through it across the room, and then went back to her seat and waited for her turn. The teacher said she did it all by herself. What impressed the teacher the most was that she remembered exactly how to do it. The teacher also wrote in her book saying,
Abbey was teaching me the sign for bird yesterday. She put my hands together to show me how- too cute. She also said "your turn" out on the playground to one of her friends.
This doesn't surprise me becasue she is very good at taking turns. She is verbalizing more and trying to say certain words. If you are around her enough you can pick-up on a few of them.

Thursday, September 13, 2007

Having a little brother around

I thought I would share how the older two are handling having a new brother around.


Abbey has been so excited about the baby. She wants to hold him so badly. She holds her arms out for him often. She gives kisses and nicely touches Andrew's legs and feet. She has been much more gentle (without us having to constantly remind her) than we expected. I attribute this to school. When her teachers found out I was pregnant they started working with Abbey on holding a baby doll and being gentle. Until this point she had no interest in baby dolls. In the last 6 months she holds and rocks them, brushes their hair, and we've even caught her putting them in time out. What has impressed us is how she was able to transfer those gentle actions from the baby doll to the real baby. She just loves the newest little one.


Alex, I think, might be struggling a little. He has definite interest in Andrew. He wants to kiss and touch Andrew and this morning the baby's hand touched Alex's face...he thought that was neat and wanted to keep doing that over and over. But I do think Alex knows this new little person is taking Mommy and Daddy's attention away. He does seem to be acting out quite a bit more than he was before. The question is...is this just him being a typical two year old or is it the newest addition. It's probably a little bit of both. This combination creates a crazy house these days but I know things will settle down....eventually.

All in all things are going well. Andrew has an awake day then a sleepy day. The nights are still a bit rough but we know that in a few more weeks he'll find a good routine for all of us.

Wednesday, September 12, 2007

Holy Cards


Leticia at Dr. Jerome Lejeune Society received a letter along with Holy Cards from Dr. Lejeune's daughter, Anouk Lejeune Meyer. She wrote, "I hope these images are going to help some parents who want to ask "graces" through my father to God. I pray for you and your beautiful work".

Read the reast at here.

Tuesday, September 11, 2007

The little things....

One of the great things about having kids are the little things in life they teach us and this is something Abbey does often. I always find it fascinating how funny these little things are, like pulling up chair and resting her elbow on the table because that is what mommy and daddy are doing or getting a book and instead of bring it to you to read it to her, she opens it up and points to the pictures as if she is imitating her teacher at school. Or perhaps when she get Dora and straps her in the chair at the table or puts her in time-out for doing who knows what. I could go on and on but the best is when you are walking in the mall holding hands and she kisses your hand and looks up at you as if to say thank you for being my dad and I love you. These are the important things in life our kids teach us. They could care less about how much money we have in the bank, what car we drive, or if we have the most fashionable clothes. All they want is to be with us and for us to love them.

"Unless you turn and become like little children, you will not enter into the kingdom of heaven" (Matt. 1 8: 3).

Monday, September 10, 2007

Stand Tall

I recently was given Patricia Baur's website. She is a journalist who focuses on the convergence of science, medicine, ethics, public policy, disability and the media. Bauer and her husband are among the founders of the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.

(READ MORE)

On August 5th of this year she gave the keynote speech at the 35th annual convention of the National Down Syndrome Congress in Kansas City, Missouri about routine prenatal screening. It is worth reading.
I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.

Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it
Read it here.

Friday, September 7, 2007

What is Down Syndrome?

I had something interesting happen to me yesterday. I had to see the doctor so I thought I would give Kim a little break and take Alex with me. We had a longer wait than usual because the doctor had to go to the Hospital for a brief emergency. While we were in the lobby waiting Alex was entertaining the other two ladies in the room with his charm. He was telling them about his new baby brother and sister Abbey and through the conversation I mentioned that Abbey had Down syndrome. One of the ladies, I would guess she was in her late 70's early 80's asked me what Down Syndrome was. I must say it took me by surprise. I have had kids want to know more why Abbey is the way she is but never a grown-up ask what is Down syndrome. I explained by giving her the medical answer but finished it with a brief answer of her being delayed in certain areas like speech, walking, and other cognitive skills. Then she asked if it was something Abbey would grow out of? Of course, I answered no.

It's obvious this lady has never been around someone with Down syndrome and given her age I guess I shouldn't be surprised by her questions. I think it would be safe to say that when she was growing up kids with Down syndrome were placed in institutions and were very rarely seen by the outside world. Over time this has changed and great strides have been made to bring about the awareness of Down syndrome. Much much more needs to be done. What scares me is that the American College of Obstetricians and Gynecologists (ACOG) is pushing women to have an amniocentesis done in order to detect defects in an unborn child. Why is this such a big deal? Because 90% of women who find out they are having a child with Down syndrome abort their baby. If this continues, people of this generation will one day be asking the same question this lady asked, what is Down syndrome?

I was recently asked to join a group called The Dr.Jerome Lejeune Society. Please take the time and read our mission and goals! You can also read more here.

I also would suggest reading this article at causa nostrae laetitiae

That's what I'm talking about...

The last several days have been good for Andrew. He is starting to eat more during the day and less at night, giving us more time to sleep. He eats about every 3 hours during the day and ever 4-5 hours at night. He had his 2 week check-up yesterday and has returned to his birth weight. He returns to the doctor in 8 weeks to get his first set of shots. That should be fun!

Abbey is finishing her first week of school today. Everything is going well and she hasn't been sent to the Principal's office yet. We have been really pleased with the communication the Head Start program has had with us. They have a very structured routine, which all kids need. Abbey seems to thrive best in a structured environment. She has always enjoyed school or any of the daycare programs she has attended and she is always in a much better mood in the afternoons. I'm not sure what that says about us but if she likes it, we like it:)
Abbey's first day on the bus and she loves it. Every morning we have her and her brother watching for the bus. Sometimes I think Alex is more excited about the bus than she is.

Wednesday, September 5, 2007

What others arer saying....


The other week I briefly commented on an article written by Time Magazine on Blessed Mother Teresa. I think it might be important to read what others are saying about article and her. Most of them, if not all, are writen becasue of the recent article.

Fr. Cantalamessa on Bl. Mother Teresa
National Catholic Register
More on Mother Teresa
Mother Teresa Persevered Through Doubt

Blessed Mother Teresa
pray for us

Trying to understand Down Syndrome

Others often find it difficult to come out and ask what it is like to have a child with Down syndrome but you get the indications that others want to know what it is like by the questions they ask. It is something difficult to explain, especially when your child is young. Every parent has a different experience but there always seems to be some common struggles paretns go through, which is why finding other parents who have a child with Down syndrome is so important. Emily Perl Kingsley best describes it like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
This story, Welcome to Holland, is very popular but every time I read it I am reminded what it is like, even though I experience it every day.
I also enjoy reading this poem periodically The Creed with Babies with Down Syndrome
My face might be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do as you do
But at my own pace.

Tuesday, September 4, 2007

Priorities

I figured it was probably time for me to chime in and share my experiences too. Turk (Steve) has done a nice job of keeping you informed of the goings on and I'll let him continue to do that but I'll put my two cents in every now and then. The first thing I wanted to share is how quickly one's priorities can change.

First point to share is that we knew from the beginning of the pregnancy that we were going to need to schedule an induction for this one. There were many factors that justified that in our minds...a 45 minute ride to the hospital (and a history of short labors & deliveries), two other kids (one with special needs) and no family close enough to get here in a moments notice to care for them.

Second point to share and forgive me for a moment while I bore you with work stuff but things were crazy busy for me. As a company, we are preparing a major transition to outsourcing Human Resources work. This requires a lot of prep work for those of us "in the field". There were two major projects that I was planning on completing before going out on maternity leave. A few weeks ago I was so uncomfortable being pregnant and really wanted to put an end to that by having the baby, at the same time I was sort of relieved that the Doctor scheduled the induction for Aug 30th. That felt like it was way out there but that at least gave me the opportunity to finish my projects and a bunch of other work stuff.

Well, Andrew had a different plan in mind. He wanted Mommy and Daddy to experience something different. So on Aug 26th he decided to start making the journey. The water breaking and having labor pains at home was not something we had experienced with the other two. Then when he was born on Aug 27th that work stuff wasn't so important anymore. Instead, we were holding this little (well...not so little) human being that was God's creation and was brought into our lives to teach us many things. The first of which came right away.

God is good.

Monday, September 3, 2007

Finding a schedule

Things have settled down a little at the house and we are trying to find a good schedule for Andrew. It is hard to find a schedule because he sleeps so much but we know how important a schedule is so we are trying to find one for him. At this point, he is eating every 3-4 hours and is sleeping between his feeding every other night. The nights he doesn't sleep during his feeds he isn't bad but we don't get much sleep. Kim and I take turns with him downstairs, letting the person upstairs get a good 4 hours of rest. (Thank God the other two sleep well at night) This has worked for us in the past so we are doing it again. Andrew is still a little gassy. We have been giving him mylicon at his feedings but we're not sure this has helped. In all, things are good and we return to the doctor this week.
Kim's family came for a visit this weekend and it was nice to see everyone. Some people don't like to have alot of people around when they first came home but we don't mind. It is too early to have Andrew on a consistent schedule so having others around gives us a little break from things. More importantly it is fun to share the life of our new baby with others.
I am working on a post about Abbey's PPT meeting but haven't quite finished it. I hope the post will give some insight to what we and other parents experience during these meetings.

Have a good Labor day!

St. Andrew
Pray for us