tag:blogger.com,1999:blog-46826445136701005862012-01-07T10:02:30.621-08:00Follow our journey of welcoming our baby boy who was diagnosed with Trisomy 21/Down syndrome into our family.mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.comBlogger741100tag:blogger.com,1999:blog-4682644513670100586.post-69859603056146065362010-07-06T20:45:00.000-07:002010-07-06T20:48:14.806-07:00

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-53458603468335475422010-04-23T00:43:00.000-07:002010-04-23T01:28:55.891-07:00

Sylas ("Man of the Forest") is officially ONE! He enjoyed sharing his birthday with Earth Day...and celebrated with helping his siblings and their schoolmates clean up a beach that is near their school.In the evening after dinner, Sylas got his own birthday cake to dig into. All of us anxiously anticipated how Sy would react. I asked him if he wanted cake, and he started kicking and waving his

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com14tag:blogger.com,1999:blog-4682644513670100586.post-54867077606822968432010-04-21T23:40:00.000-07:002010-04-22T02:00:01.488-07:00

One year ago today Sylas and I looked like this:The day prior, Brett and I had flown over to Oahu and planned to stay until I gave birth. Sylas' due date was 2 weeks away. This was a VERY active day, and I probably walked a few miles. I don't know what I was thinking, but I sure was excited to actually have stores (like Target) to shop at, and we had yet to find a car seat that would fit our

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com4tag:blogger.com,1999:blog-4682644513670100586.post-27690566485494104252010-04-14T00:00:00.000-07:002010-04-14T17:48:38.437-07:00

Above: Sylas enjoying the water at 6 mthsBelow: Sylas reaching for toys at 10 mthsSylas has been trying to crawl for many months now. The frustration is obvious...but once he is in the water, all the frustration is washed away. He sees a toy across the pool, and his legs ("little kickers" as we call them) move into action and off he goes to get his toy. Prior to Sylas starting lessons at seven

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com7tag:blogger.com,1999:blog-4682644513670100586.post-47134072419473809862010-04-08T00:18:00.000-07:002010-04-08T02:10:30.523-07:00

Here on the island, Easter is quite different for us. This holiday is not filled with extended family and our home is not filled with Easter decor (other than plastic and homemade Easter eggs). Very different than our experiences in MN...but not different in a good or bad way, just different.Grandma Annie was visiting the two weeks prior to Easter, and initiated many impromptu Easter egg hunts

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-68248308084777021632010-03-28T19:20:00.001-07:002010-03-28T19:56:12.823-07:00

Aloha, it has been WAY too long since I posted. Sylas will be one year old in less than a month, so I have some catching up to do! As we settle into our community more and more everyday, I find that I am not very good at juggling 3 kids, a dog, and a blog. Since Christmas, Sylas has experienced his first tsunami warning (we are up high enough, so no evacuation for us), first croup virus with a

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com9tag:blogger.com,1999:blog-4682644513670100586.post-89737947992068824832009-12-25T20:42:00.000-08:002009-12-25T21:03:29.291-08:00

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com9tag:blogger.com,1999:blog-4682644513670100586.post-55672967890493384822009-12-25T20:13:00.000-08:002009-12-25T20:41:35.240-08:00

Merry Christmas!!

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-72896990710577020672009-12-14T20:39:00.000-08:002009-12-14T21:42:29.871-08:00

Sylas is over 7 mths now, so I better update you with pictures before he turns 8 mths. It has been heartwarming to watch him grow. He is so observant of people, especially his family. He watches us as we dart around doing whatever we do. When his siblings come close to him, he automatically smiles. Sylas bursts into laughter when his daddy pretends he is going to tickle him with "The Tickle Hand"

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-58968341359695799832009-12-14T19:22:00.000-08:002009-12-15T20:38:59.973-08:00

GOODBYE WARM...HELLO COLD.....I have not blogged much lately, we have been in the travel mode and are now in the cold state of MN (For all you football fans, Go Vikings!). We really debated this year whether to return for the holidays. I feel as if we are in a bubble in HI, protected from all this yucky flu that has been creating havoc for all. I started an autoimmune booster and hand washing

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-59381655486652222332009-11-27T23:11:00.000-08:002009-11-28T00:16:29.542-08:00

Grandma Kathy (aka "Grandma Moo Moo"-name affectionately given to her by Sam when he was a baby) has been visiting us for the past 2 weeks. She has made Sylas giggle a lot during her stay. She is planning on taking the kids to see Santa tomorrow, I wonder if he will be dressed in his traditional garb, or if he will go for the more appropriate outfit of a Hawaiian shirt and board shorts. We have

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-6720052015446130192009-11-26T23:26:00.000-08:002009-11-27T01:39:30.958-08:00

This year has been full of things to be thankful for.Everyday I am thankful for the sun rising (actually this picture is of the sun setting, sorry I can't get up that early!). I really am thankful for the sun rising, not just because I know that the sun will bring me warmth and remind me that I am not freezing in Minnesota anymore, but because the new day will give me more time to experience life

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-86577171856543884172009-11-07T23:01:00.000-08:002009-11-07T23:59:53.144-08:00

A few months ago, I was blessed with meeting families from all over the island who also have a young child with DS. We are planning on getting together every 1-2 mths, and we just happen to be getting together this coming Monday. I will cherish these playdates, as I have yet to meet any moms on my side of the island that I can relate to in this unique way. This is another reason why I feel so

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com6tag:blogger.com,1999:blog-4682644513670100586.post-40699200724212587222009-11-02T22:25:00.001-08:002009-11-03T22:58:23.755-08:00

Growing up in WI/MN, I always planned for a chilly Halloween, complete with wearing a winter jacket under or over the Halloween costume of choice. So these days, living in 80 degree weather, the Halloween preparations have indeed changed. Now the goal is a cool cool costume. I couldn't put Sylas in one of those fuzzy baby costumes without cooking him. Instead I decided on a black onsie (with a

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-70750201128775353312009-10-13T11:32:00.000-07:002009-10-13T12:52:23.071-07:00

Are you in need of any DS related books?Woodbine House is a publisher specializing in books about children with special needs. My Hawaii friend Debbie of http://tianagrace.blogspot.com/, reminded me that in honor of Down Syndrome Awareness Month, Woodbine House is taking 20% off the Down syndrome titles during the month of October. Here is the link to their website: http://www.woodbinehouse.com/

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com4tag:blogger.com,1999:blog-4682644513670100586.post-31653644303231171162009-10-13T00:41:00.000-07:002009-10-13T01:05:32.720-07:00

October is National Down Syndrome Awareness Month. Adrienne at http://www.ourunexpectedjourney.blogspot.com/ created this button that you can click on and it will direct you to the National Down Syndrome Society website:http:// This month, many communities are having "Buddy Walks" that involve building a team for your child, finding sponsors, and then walking on the day of the event. The Buddy

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-4113138588399703642009-10-09T15:48:00.000-07:002009-10-09T16:51:13.917-07:00

Brett had a birthday last weekend and the kids joined forces to make a cake. They had their share of licking the batter spatula/bowl and thank goodness did not get sick (raw eggs, I always cross my fingers). Here is the bday picture. We also went to the county fair with the kids. It was dusty and dirty and a whole lot of fun! In the midwest, I always have a big greasy corndog at the fair.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-67216353613995341842009-10-08T02:34:00.000-07:002009-10-08T03:10:15.475-07:00

My dear friend Linda recently sent me a link to an article about "babies driving robots" of all things! Linda and I used to work together treating lymphedema patients and she recently took a position as a teacher assistant in the U of MN Physical Therapy Program. Currently she is teaching the Human Growth and Development class, and I have made her promise to forward her notes to me. Included in

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-87766586393142359642009-10-08T01:47:00.000-07:002009-10-08T02:34:34.451-07:00

Man, how do all the blogging moms out there do it? Everyday I think of something that I just MUST blog about, but it never reaches my blog! I have started a notebook where I jot down quotes, web addresses, articles, and ideas that I want to someday blog about....someday.Quick update on Sylas: Had a speech eval last week. His therapist is passionate/informative/bright and I think she will be a

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-83592007320556298412009-09-27T02:03:00.000-07:002009-09-27T03:05:13.768-07:00

As you all know, Sylas was blessed with enough hair to share. Today on two separate occasions, I heard "Ooohhh, SHE is so cute!". Of course, I thought they were directing the compliment at me, but then reality set in hard and I realized they thought Sylas was a girl! Thank goodness Sam did not hear this, as he surely would have set them straight. Now Sylas was not even dressed in green, but a

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com13tag:blogger.com,1999:blog-4682644513670100586.post-5483747350820010732009-09-27T01:01:00.000-07:002009-09-27T02:01:44.652-07:00

Sylas turned 5 months last week! These months have been flying by so quickly, I really can't describe how I feel about that. Happiness and excitement for all he has accomplished, love for his sweet smiles and giggles, anticipation for what lies ahead, desire to enjoy every moment and for time to slow down, hope that I am doing the best I can as a mom....I could go on and on. I look into Sylas'

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com6tag:blogger.com,1999:blog-4682644513670100586.post-62353245467182483442009-09-20T22:58:00.001-07:002009-09-20T23:34:18.761-07:00

I was getting Sylas to belly laugh tonight, so I called in the kids to see. Sam said, "Let's get the video camera!". Here it is:

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com6tag:blogger.com,1999:blog-4682644513670100586.post-47888204486739274902009-09-19T14:01:00.000-07:002009-09-19T14:46:03.880-07:00

Sylas and I made the unpleasant trip to the doctor a few days ago for immunizations. I squeezed in my monthly visit to Cosco and Walmart before the doctor appointment, so Sylas was probably ready to head home...poor thing! I was very anxious for the shots (you'd think I was getting them) because it is the hardest thing watching your sweet baby get unexpectedly stabbed in the thigh with a needle.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-12131549368941689052009-09-15T02:19:00.000-07:002009-09-15T02:39:27.824-07:00

I should have posted this a LONG time ago, considering the kids started school mid-August. Things have been really busy, I know everyone is busy too, but goodness I really need to find more hours in the day. I need time to do blogging of course!! The first day of school was a success. Sophie off to kindergarten and Sam to 2nd grade. Sophie pretty much pushed her way out of the car past Sam. Sorry

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-54570006375922968562009-09-15T01:10:00.000-07:002009-09-15T02:14:29.917-07:00

The years go by so quickly, my first baby is now 8 years old. He was born 9/12/2001, the day after the traumatic event of 9/11. I will always remember the joy that we felt waking up that warm sunny morning of 9/11, so excited that this might finally be the day that we would be blessed with a baby. I had an appointment at the clinic to have my cervix "gelled" by my nurse midwife. I was overdue

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-83030095965079250952009-09-02T22:19:00.000-07:002009-09-02T23:02:01.983-07:00

On Wednesdays, some of the blogs that I follow post only pictures and call it "Wordless Wednesday". Well, I have a hard time not using my words as you probably know, so I just have to add a few. Sylas was in the pool for the first time since we returned from Minnesota. He was a little unsure about it. Just enjoy the other picture, no words to add.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com4tag:blogger.com,1999:blog-4682644513670100586.post-41699930529175458932009-09-02T02:01:00.001-07:002009-09-02T03:20:40.044-07:00

Last week, Sylas had his first physical therapy visit, and today his therapist returned but this time a big red ball accompanied her. Sylas has low muscle tone, which is called hypotonia, in many areas of his body. I like to think of his muscles "hanging loose". To improve the tone in his neck and trunk muscles, his therapist showed me how to stabilize Sylas on the theraball (the big red one!

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-55677367322172739702009-08-29T23:44:00.000-07:002009-08-30T00:38:02.470-07:00

On Thursday Sylas had his first PT appointment. The therapist came out to our house, and taught me some great ways to assist Sylas developmentally. I will write more on this in an upcoming post, I want to include a few pictures, so for now.....you get to read about kitties!Today we visited a cat rescue and sanctuary called 9th Life Hawaii (www.9thlifehawaii.org). Earlier in the year we had

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-81263449955101191212009-08-27T00:00:00.000-07:002009-08-27T01:13:57.360-07:00

Last week when we visited the doctor, she ok'd Sylas to try cereal. I bought a package of baby spoons last week and today I bought rice cereal. The woman who was ringing up my groceries had no idea of the exciting date I had planned with Sylas and the rice cereal. When I arrived home, I found that this date for two would now include a third. Sophie jumped into action and chose a pink spoon to

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com7tag:blogger.com,1999:blog-4682644513670100586.post-25290089606829419162009-08-25T22:51:00.000-07:002009-08-25T23:26:55.559-07:00

I have a new heading at the top of my blog. My blog friend Adrienne (she is mom to Bennett who is Sylas' age and also has DS; her blog is http://www.ourunexpectedjourney.blogspot.com/) created it for me and it features one of my favorite pictures of the kids. Thanks Adrienne! Sophie and Sam had been wanting another sibling for quite awhile prior to Sylas coming into the picture. As soon as Sophie

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-10010069431400306442009-08-22T23:46:00.000-07:002009-08-23T01:44:05.300-07:00

Today Sylas turned 4 months so we decided to celebrate and drive to the Lavender Farm in Kula. Kula is in upcountry which is considerably cooler. The cool weather seemed to wake everyone up. Our family loves lavender, so this is one of our favorite places to visit. They grow over 45 different varieties (I had no idea that there were so many, actually I hear that over 200 varieties exist!). We

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-81466516739326295192009-08-21T16:11:00.000-07:002009-08-21T16:32:30.131-07:00

Pectus Excavatum...say that 3 times fast. Before you whip out your dictionaries to look up this term, I will clarify: it is the most common congenital deformity of the anterior chest wall and it produces a caved in appearance of the chest. It is generally cosmetic and sometimes genetic. We noticed that when Sylas breathes, his chest sucks in slightly near the lower part of his sternum. The

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-44772166572773198222009-08-19T23:08:00.000-07:002009-08-20T00:31:04.764-07:00

It has been way to long. I feel a bit rusty doing this blog stuff. We left MN last Thursday, and I am excited to get back to my blog and catching up reading the blogs that I follow. Minnesota was a social whirlwind of family, friends, and lots of events. I was actually somewhat anxious about blogging because I have so much to write about, so I am just going to start with what ever pops into my

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com6tag:blogger.com,1999:blog-4682644513670100586.post-80132975390616329982009-06-13T08:26:00.000-07:002009-06-13T08:54:18.492-07:00

For those of you who read my earlier posts, you may remember a post showing a picture of my sister in law. We were both pregnant at the same time, but she was due about 3 weeks after me. She had her baby a few days prior to us arriving in MN, so we actually caught her still in the hospital the day we arrived. Baby Josephine was born very healthy with a great set of lungs! She is adorable and

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-24300912807570722352009-06-13T07:55:00.000-07:002009-06-13T08:26:20.584-07:00

We landed in Minnesota safe and sound. Sam and Sophie did great, as did Sylas. Sylas slept pretty much the entire flight with of course a few milky breaks. I am so behind in blogging, just a few days ago I finally had access to the internet. The pictures above are from the day prior to our trip. I thought, why not put my infant in the pool? He loved it, and slept very well after his water

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-52518212303460316402009-06-01T19:41:00.000-07:002009-06-01T19:48:41.408-07:00

I'm so happy to announce the birth of Bennett Patrick on May 22, 2009 (exactly one month after Sylas). I found his mom, Adrienne, through the wonderful world of blogging. She also had a prenatal diagnosis of D.S. about the same time that I did. After he was born, he did not have to go to the NICU, and was able to be discharged home with Adrienne. He is the sweetest little boy! Her blog is http://

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-5570493459560667082009-06-01T18:45:00.000-07:002009-06-01T19:51:47.246-07:00

Hmm... I've had enough of this "tummy time"One, two, three, ROLL!Much better. Rolling is overrated, can we work on crawling?ZZZZZZZZZ.....Sylas rolled over on Memorial Day. I actually missed the first roll because I was putting away dishes! He did it a few more times to appease his cheering fans. People look at me like I'm delusional when I tell them, but he really did it!

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com6tag:blogger.com,1999:blog-4682644513670100586.post-73263463520218180282009-06-01T16:37:00.000-07:002009-06-01T18:45:42.928-07:00

On Memorial Day we had the pleasure of having our new friends, Dennis, Debbie, and their daughter Tiana visit. Tiana is 4 yrs old and is absolutely adorable. Tiana has Down syndrome, and I am fortunate to have met Debbie while I was researching on the internet. She has a wonderful blog called www.tianagrace.blogspot.com. I am so lucky to have met Debbie, she has answered all of my many

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-60141763550584028552009-06-01T16:03:00.000-07:002009-06-01T16:36:42.365-07:00

Aloha!I have so much to post, I don't know where to start. We have been so busy with getting ready to fly to MN and the final weeks of school for the kids. Sam and Sophie have their last day of school tomorrow, and then the following day we leave for MN. AHHH! Anyway, it has been an exciting past few weeks. First of all, Grandma Annie who had stayed with us for about 1 1/2 mths, returned to MN.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-3659809139189106672009-05-23T12:05:00.000-07:002009-05-23T12:12:24.865-07:00

Sylas turned 1 month yesterday. As you can see, he was pretty excited about it. :)

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-10435550623999336072009-05-19T20:23:00.000-07:002009-05-19T23:38:19.887-07:00

Today the early intervention therapists came over to visit Sylas. He was awake and active just before they arrived, so what would you expect... Sylas went into a deep sleep when they arrived. Fortunately, he finally did wake up so he could show off his moves. I laugh at myself because I am so proud of what my 3 1/2 week old son can do. He is right on target in all areas of development for a 1

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-75181056332494086242009-05-18T22:59:00.000-07:002009-05-18T23:30:31.748-07:00

Great news!! Sylas had his appointment today with the cardiologist for an echocardiogram and EKG. The doctor spent about 30 minutes looking closely at Sylas's heart and not saying much. I wanted to blurt out a bunch of questions, but I remained quiet and patient. Then he said, "Well, it appears tissue has grown over the opening of the VSD." I was completely surprised considering I was

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com7tag:blogger.com,1999:blog-4682644513670100586.post-75383964688760816162009-05-17T20:12:00.000-07:002009-05-18T00:10:26.051-07:00

Yesterday we had the re-do Mother's Day. The beach was lovely, the water warm, and Brett put a lot of sweet effort into the day. I really wanted to try out my rad surf skills, but I didn't want to put the other surfers to shame, so I remained in my beach chair and ate Pringles instead. Sylas napped most of the time but awoke briefly so I could snap a few pictures of his first beach

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-27948047286439959072009-05-15T14:56:00.000-07:002009-05-15T15:29:28.443-07:00

Sylas waves "Aloha!"Yesterday Sylas had his weekly weigh-in at the doctor's office. Once again he came through with flying colors - he gained 6 oz! It may seem like a tiny bit, but it is exactly what is needed right now. He is eating great, sometimes too much and his tummy will get upset. Sylas is starting to look like a teenager as he now has a darn good case of baby acne. Sam had the same

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com5tag:blogger.com,1999:blog-4682644513670100586.post-47080122512281021532009-05-10T19:47:00.000-07:002009-05-10T20:24:41.573-07:00

Happy Mother's Day to all of you mothers out there! What a wonderful thing to be, a mother. I am so blessed to have my mother. As you know, she has been staying with us since before Sylas was born, to help with the kids and Lola. Last night, so we could get some sleep, she stayed up with Sylas for two of his nighttime feedings. What a wonderful Mother's Day gift!Sophie has been asking me why her

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-91564132749440492492009-05-08T00:31:00.001-07:002009-05-08T00:39:36.722-07:00

Today we went in to see Sylas's doctor for his weekly checkup. Hurray, he gained weight and is now 6 lbs 8oz which is slightly more than his birth weight. He is doing such a good job eating now so I would have been really disappointed had he not gained weight. Oh and guess what? We have been trying to do "tummy time" with Sylas everyday to help strengthen his floppy neck muscles. Tonight

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-39857030265578440132009-05-06T23:48:00.000-07:002009-05-07T01:22:59.374-07:00

Here I am posting for a third time today after not posting for a week! I mentioned previously about the radiology doctor who did the 20 week ultrasound. Remember how we had another experience with him a week before Sylas was born (see 4/21 post)? I have a follow up story...Sylas was transferred to the NICU shortly after he was born. Later that day, Brett and I were riding the elevator to the NICU

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-81619872315528468672009-05-06T14:20:00.000-07:002009-05-06T14:36:13.197-07:00

A few people have asked me about Sylas's name and what it means. Sylas stands for Man of the Forest. This meaning is quite appropriate as Sylas was born on Earth Day. Sylas spelled "Silas" was also a missionary companion to Paul and Timothy in the Bible.Here are a few pictures of Sophie helping with Sylas's sponge bath. She was so excited to help since she LOVES "her baby Sylas".

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-11410290157528366172009-05-06T13:16:00.000-07:002009-05-06T14:09:30.643-07:00

We are home! I can't believe how time flies! Sylas was discharged from the hospital last Wednesday afternoon, but we were not able to fly home until Friday morning at 6am because of regulations with Sylas's oxygen and the airline. We got home just in time to attend Sam and Sophie's May Day festivities at school. I have been having problems with the slideshows that I downloaded. Last night

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-20773351268983200752009-04-29T11:00:00.000-07:002009-04-29T01:55:38.546-07:00

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-46347568178066925252009-04-29T00:44:00.000-07:002009-04-29T00:54:02.731-07:00

Brett caught Sylas with his eyes wide open during our afternoon visit. We were told that the oxygen unit for use during travel and at home has been ordered. Hopefully they can train us tomorrow(Wednesday). Tonight Sylas will be moved out of NICU into a transitional unit. Hurray!We went out to a nice dinner tonight with Grandma Kathy. I am guessing this will be the last quiet dinner out for a long

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-72877719233559827892009-04-28T17:16:00.000-07:002009-04-28T17:42:14.124-07:00

It has been a busy week. Sam and Sophie returned home yesterday. Grandma Annie has things under control and the kids are back in school today. We already miss them. Soon enough we will all be together. Brett's mom unexpectedly decided to fly out to visit Sylas and the kids. She arrived on Saturday and was able to spend a few days with Sam and Sophie. This morning she was up early and

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-40283753331876686662009-04-28T17:00:00.001-07:002009-04-28T19:56:43.326-07:00

The following slideshow includes pictures from a few days prior to delivery up to the arrival of Sylas. Sylas has an IV for the glucose drip and a nasal cannula for his oxygen. He is also hooked up to monitors to keep track of his oxygen levels, heart rate, and respiratory rate.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-90388878671108137892009-04-28T16:00:00.000-07:002009-04-28T19:55:49.333-07:00

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-73550557330636004552009-04-25T18:31:00.000-07:002009-04-25T18:44:45.018-07:00

Hello everyone- you are not going to believe this but I spelled my son's name wrong!!! Can I blame it on "pregnancy brain"? No I guess I can't plead that excuse anymore! So it is SYLAS not Silas. I posted this morning and I checked my blog this afternoon and saw my mistake. How embarrassing!

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com3tag:blogger.com,1999:blog-4682644513670100586.post-70955991216919459072009-04-25T11:34:00.000-07:002009-04-25T18:31:30.388-07:00

Fresh out of the oven! Sylas Matthew born Wednesday 4/22/09 at 3:30am. 6 lbs 5.5oz, 20 in length.THANK YOU to all of your wonderful emails and messages! We love you all! I am sorry that I have not been able to personally respond, things have been pretty busy. We have a ton more pictures, but this is all I can upload right now. Shortly after Sylas was born, he was found to have low oxygen and

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com9tag:blogger.com,1999:blog-4682644513670100586.post-72291979331175664062009-04-21T07:26:00.000-07:002009-04-21T08:00:16.453-07:00

Yesterday we arrived in Oahu and checked into our hotel. We got to the hospital just in time for my non-stress test. They decided to do the quick ultrasound first to check the level of amniotic fluid. The u/s technician found that my fluid level had dropped from a 19 to a 9 from last week. She did the test a second time and then seemed to become more concerned about something else she found.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-30084225666806725902009-04-14T01:04:00.000-07:002009-04-14T01:22:33.191-07:00

I am worn out! I am either sugar crashing from the jellybeans or this pregnancy is catching up to me. Today we flew over to Honolulu for another doctor's appointment. I was hooked up to all the monitering equipment and they noted a few contractions. Now I can really feel the tightening during contractions, but there is no pain. Hopefully, the pain will hold off for a few more weeks! The

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-184311003648633272009-04-14T00:40:00.001-07:002009-04-14T00:40:22.953-07:00

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-34288918891955012062009-04-14T00:21:00.000-07:002009-04-14T01:04:00.289-07:00

Happy Easter! I hope everyone enjoyed the day. We all had a joyous day that included brunch, Sam leading an Easter "church service" in our front yard, an egg hunt, and an afternoon party at a neighbor's house. I feel fortunate to be having a baby soon, it kind of goes with this holiday of rebirth and new life.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-64231712986826480002009-04-07T23:22:00.000-07:002009-04-07T23:49:24.349-07:00

My mom arrived last week and will be staying until after baby is due. She offered to get up every morning early and walk the dog. I could not argue with that! It has been a bit tough to walk Lola lately, so she has been neglected. The kids also are enjoying the extra attention.We made the trip over to Oahu yesterday for my 36 week appointment. I had a non-stress test to moniter the baby's

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com2tag:blogger.com,1999:blog-4682644513670100586.post-36545587741799020342009-03-31T06:00:00.000-07:002009-03-31T00:06:05.581-07:00

If you have a few minutes, click on the videos below. One of them is an interview with John C McGinley from the show "Scrubs". John has a son with DS. He speaks about why the word "retard" is so hurtful and why we should stop using it in everyday conversation. Personally, there have been many times when I have said to myself "oh, I am so retarded" because I was clumsy or hopeless in a situation.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-15401155961268343792009-03-30T00:20:00.000-07:002009-03-30T01:47:41.874-07:00

Only about 5 weeks left, so I thought you may want to see how humongous I am. I never took pictures like this when I was prego before. Instead I stayed covered up (maybe because it was sooo cold in MN!). While Sophie loved getting her photo taken, Sam wanted to do Kung Fu moves. Sorry, I left those shots out of the slide show.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com4tag:blogger.com,1999:blog-4682644513670100586.post-61442592011549881402009-03-25T21:21:00.000-07:002009-03-25T23:35:19.099-07:00

There is an organization called Reese's Rainbow in Maryland that promotes and facilitates international adoption and rescue of children with Down syndrome and children with other special needs. Today I read a posting on a DS forum, from a mom that is currently adopting a baby from Russia that has DS. She wanted to bring attention to a little girl who is currently being transferred from her

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-85105622492077891532009-03-24T00:32:00.001-07:002009-03-24T00:56:30.150-07:00

Last Saturday, March 21st, was celebrated as World Down Syndrome Day. The date 3/21 is significant for the 3 copies of the 21st chromosome. Fifty years ago, Professor Jerome Lejeune discovered the extra copy of the 21st chromosome which causes Down syndrome.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-11855708887660908272009-03-12T23:26:00.000-07:002009-03-17T14:07:57.762-07:00

Today I had another ultrasound to check for growth and heart complications. He is smack dab center of the growth chart, so the doctor is not worried about low birth weight. Everytime I see this doctor he comments on how babies with DS tend to be hypotonic (floppy), which brings me back to my friend telling me that he would be "relaxed, hang loose like Hawaii". He is 4 lbs, 5 oz if I remember

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-44623527262880979682009-03-10T02:48:00.000-07:002009-03-16T20:06:26.657-07:00

Update on the kiddles:Sophie just started horseback riding lessons on Sunday. She did a fantastic job and knows how to cue the horse to go, stop, turn left and right, and trot. I hear so many people talk about how they were bucked off of a horse when they were young, never to try it again. I guess my ignorance and zippo knowledge about horses has allowed me to feel ok about Sophie trying this.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-10861988895053068562009-03-05T22:29:00.001-08:002009-03-16T20:28:26.927-07:00

Today I read a column in The Boston Globe by Beverly Beckham. Here it is:Smiles, songs for a granddaughter who is just rightBy Beverly BeckhamMarch 1, 2009Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," and singing along. She

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-10411972198806831332009-03-03T01:35:00.000-08:002009-03-16T20:09:00.316-07:00

When we found out about our baby's diagnosis, we received a lot of love and support and we also had many people say "I don't know what to say". I thought about this and I am not sure I would have known what to say either if the situation was reversed. When I was doing internet research, I came upon a website that addressed this specific issue. The "Things NOT to say" are not necessarily things

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-56210294291531909232009-03-02T18:07:00.000-08:002009-03-16T20:10:19.204-07:00

As many of you know, my sister in law Jen is expecting a baby girl just 3 weeks after our baby is due. I think it is much more than a coincidence considering Jen's last baby was born almost 18 years ago! We seriously did not plan this, we actually were both "not trying" that month. Jen and I share the same birthday just a year apart, so perhaps we should not be surprised that this happened. I

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-81983206362775640772009-02-25T12:24:00.001-08:002009-03-14T18:38:37.212-07:00

Get your own Family Sticker Maker & MySpace Layouts.

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-70421945487402322552009-02-23T00:19:00.000-08:002009-03-18T00:42:36.450-07:00

I want to include some basic information about DS in case you have any questions:What is Down syndrome?: It is the most common of chromosomal anomalies, usually resulting in delays in physical and mental development.What causes it? Down Syndrome is caused by an error in cell division, however it is not known why the error occurs. Most people have 46 chromosomes in each cell with each chromosome

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com1tag:blogger.com,1999:blog-4682644513670100586.post-54126098210353191162009-02-22T13:36:00.000-08:002009-03-17T13:53:19.902-07:00

I am amazed by the talents of people with Down syndrome. Compared to decades ago, they are given so many more opportunities to develop their strengths and talents. Karen Gaffey is an accomplished swimmer and professional speaker who happens to have Down syndrome. I am hoping our new little one will enjoy swimming as much as his siblings. The following is a utube video of Karen swimming Lake Tahoe

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com0tag:blogger.com,1999:blog-4682644513670100586.post-81097442695080630092009-02-21T23:13:00.000-08:002009-09-03T00:24:09.823-07:00

Would you like me to send positive energy to the baby?" This was asked by a friend who I happened to talk to immediately after I took a (+)pregnancy test last summer. I said that would be fine, who can argue with positive energy? I told her that the test was probably was a fluke, since the test color was very light and we had been trying unsuccessfully to get pregnant for quite a while. The next

mauimomhttp://www.blogger.com/profile/08945326689492358837noreply@blogger.com