Alexi's Dad

We've started to pick up some followers to Designer Genes from Noahsdad.com. This is awesome! We are really excited to be connected to so many great people out there in our online community of Down Syndrome advocates. With the online friends on here, I'd like to shed a little light onto our situation, more-so who I am. This sort of stemmed from Noahsdad, Rick, sharing a sneak peak into his personal life and admitting a few things about himself. This took courage and I admire everything this awesome guy is doing for our DS community. Another contributing factor into this post was a conversation between Melanie and Kerith about bows and accessories for our little girls.

-First thing I'd like to share is, I like sports. I don't watch every game of every sport, but I sure love following "my" teams. Maybe if Rick was from Pittsburgh, he'd like sports better! Just Kidding! ..but seriously..

-Second thing I'd like to share, is that I do work on cars. I can even kinda say I like to, but generally it is out of necessity not pleasure. I've got many a bloody knuckle and twice that in grease stains mastering the craft of not knowing what the heck is wrong with this darn truck...and I'm proud of it!
(Sometimes I even need Kerith to help!)




-I prefer Home Depot to Best Buy, though I do still enjoy Best Buy. I love improvement projects and I do construction work. I build swimming pools in the Pittsburgh area for my family business, The Pool and Spa Place. Home Depot just has more of what I need! (Yeah that was a shameless plug, whattayagonndo!)



-I'm a shower guy, always have been for the sheer efficiency standpoint, but doing construction work, I can not imagine sitting in a pool of whatever dirt I get into during a days work! Although I have come to appreciate bath time with Alexi and feel Rick is spot on with that. Alexi has so much more fun taking a bath with daddy, compared to sitting in the plastic chair thing. Dad just has to take a pre-bath shower.

-I love to dress my daughter in pretty little dresses, with tights, and pretty headbands on top. As a "stay at home dad" in the winter, I rarely take Alexi out of the house without dressing her up. She gets pretty little socks that look like some kind of ballerina shoe thing, tights, dresses, headbands (she has 2 that I approve,) pretty much whatever I can find. I've even heard that it matches sometimes!

I guess I'm what Rick was referring to as a "manly-man" in his blog about the move, but I love my daughter and love showing her off in every way. There are definitely days that she is sporting some hand-me-down gear from her cousin, Eryk, that people don't even know if she's a boy or girl. This isn't because I secretly want a boy, simply because I'm too cheap not to use hand-me-downs! The real secret is that I prefer the days that I get to dress her up all pretty and show off all her girly beauty.

No matter what "type" of man or woman we are, our kids are always number one, and I love seeing all of the different "types" of people who are advocating for children with DS everywhere. Just one more thing that is making this journey so awesome. So from a gear shifting, wrench turning, dirt diggin, hardware store lovin, shower takin, sports fan; I've got somethin to say to Rick. Thanks! Thanks for bringing so many of us together on your site, and spreading the amazing message to the world that rockin' Designer Genes (Down Syndrome) is ok!








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Fat Tuesday

So it's Mardi Gras, or Fat Tuesday! Alexi wont be celebrating much Mardi Gras festivities, but is sure happy it's Tuesday, we'll get to that later. Just wanted to post a bit of an update with Alexi's health.

As most of you know, Alexi wasn't feeling too well a few weeks back, but started to get better. Well she never completely got rid of her cough, and started getting it pretty bad again last Thursday. We didn't panic or anything, but kept a close eye on her and over the weekend, didn't have to be a doc to know something was up. She was getting sick from both ends and for the first time really started to act sick. She never showed a fever so we waited to bring her to the doctor until today. After her exam her doc decided she needed some chest x-rays.

Our "fear" was confirmed through the x-rays, Alexi has a bit of pneumonia. Unlike the last visit (different doctor within the same practice), the doctor is confident this will all be treatable with some antibiotics and nebulizer treatments. I'm not upset with the doctor from last time, but I think I will be scheduling our visits with the doctor she saw today, from now on. He was great with her and to the point, without getting us all worried in the process. I forgot my wallet was in Kerith's purse (where else would it be) so she got to come visit us at the doctors office today too!

So with all this sick news, why is Alexi so excited that it's Tuesday??



Because that means it's Pant-Hat Tuesday!!

Pants Hat Tuesday is becoming one of Alexi's favorite days of the week! If anyone else wants to join in the fun, you can do it on facebook by going HERE.








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Alexi's Driving Tips

That's right, Alexi's got some driving tips for all you parents out there, so listen up!







Ok so maybe we wanted to play with the green screen and this is all we came up with. Pretty cheesy but we sure had fun. We have way more outtakes than we do video, but didn't want to make it too long adding them in. Hope you enjoyed it! (At least a little bit anyway)







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TGIM!

Thank goodness it's Monday? Yup, for us anyway. The day of the week isn't really the focus, it's the snow free day that's got me excited. Dad worked 27 out of 36 hours from Saturday around 3 am Through Sunday afternoon. For those who don't know, I do snow removal in the winter months. Mom also had a rough weekend as she got sick. Still sick, in fact, and going to the doctors today to see if it's something some antibiotics might help. (She sounds just like Alexi did when she was sick.)

The hardest part of the weekend has been doing what's best for Alexi. With mom being sick, she is staying away from excessive face time with Alexi. Alexi sacrificed a bunch of her exercises, and really seemed to miss them. When I got home and cleaned up and finally got to sit on the couch with my little girl, she could not stop telling me all about her whole weekend!

Alexi wanted to be to be in my face, touching, grabbing, and telling me so many stories. I started to work with her on some core exercises and she got a huge smile on her face. She is such a little ball of joy sometimes, and I love how much she enjoys doing the things we do with her to aid in her development.

So yeah, even though mom is still sick, TGIM! Mom is staying home from work to get better and dad gets to take care of his girls (with Tanks help.) I am certainly not complaining about workin so much, this winter has been pretty easy on us for sure. Working all weekend just makes me appreciate my time with these ladies that much more. Does that make me a bit greedy? Being happy that mom is home sick? Probably, but I don't care, I love these two and I'll take the extra day off with them any way I can get it!





(If I don't write anything for a few days, please call, make sure mom didn't kill me for sneaking this picture in!)








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Occupational Therapy Take 2!

Here's our second video of Alexi workin with her Occupational Therapist. She did so amazing today!! We introduced the first official ball exercises, which she worked on for a very long time. Dad has been doing some exercises on the ball with Alexi for a week but with no professional advice on what to do until now. Then we did some tummy time exercises, and added a couple more of those to our routine, too. After tummy time we went over the latest oral exercises then went right back to the ball! Her endurance is really starting to pick up as well as her strength. This little girl just seems to impress us with her spirit every day.



Thanks for watching! Hope you enjoyed!








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'Philly' Trip Vol. 2

Ok, lets get back on track, back to Alexi's first road trip. So after the Pool Show we stayed at Aunt Tracy, Uncle Adam, and cousin Tristan's house, in Jersey. Not only did they host us for 4 nights, they opened their home to the whole family to throw the "Come Meet Alexi" party for Kerith's side of the family.

Alexi had so much fun getting to meet everyone who came, and lots of people did! She stayed awake through most of it and was just eating up all the attention. One of her favorite people she met was her cousin, Hunter. Hunter is 4 months old and already taller than Alexi! He's a big guy, and Alexi just couldn't take her eyes off of him. It was the first time she really showed interest in another baby that much and was so cute to see. They even held hands on their own!

Once the party wound down and all that remained was the immediate family, Alexi got to celebrate "Christmas in January" with her cousins Taidgh, Ronan, and Tristan. Alexi got so many wonderful gifts both from her cousins and from family during the party, which was an unexpected yet pleasant surprise! Her cousins seemed to love the gifts she got them too. ;)

Having an extra Christmas sure was a treat, though nothing beats getting to spend some extra quality time with her Lolli, Pop, and especially her Gigi. A fun little fact; Alexi gets her middle name from her Great Grandma Ola (aka Gigi.) Living over 300 miles from half of her family, Alexi doesn't get to see them everyday, so she really soaks up the love every chance she gets!

Ok, so it turns out that Philly wasn't even a stop in this trip at all. Why was it our 'Philly' Trip, you might ask? Well my wife grew up in Levittown, north of Philly, and most of the family still lives around the city somewhere. So we have always called our trips across the state to visit, our "Philly" trips.

Thanks again to everyone that came to meet Alexi, we had so much fun, and especially again to the Morgans for hosting everything!






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We interrupt the Philly Trip posts for this important update.

We were having so much fun with the 'Philly' posts but something came up that is kinda making it hard to write about anything else. Alexi is a little sick.

Ok she might be more than a little sick. Alexi got her first significant cough about 11 days ago. We called the doctor last Monday, 1/23, and in our discussions they were informed of her cough and asked a few questions. We told them she had no fever, was acting normally, and eating fine, all were true. Her cough persisted and we called back this past Monday, 01/30. Again with no behavioral changes, they were not alarmed and told us to wait until today to bring her in (2/1.) She already had her 6 month shots and RSV treatment scheduled for today.

As usual they brought us right in when we arrived. The assistant was concerned right away with Alexi's cough, and did her normal routine of checking up on Alexi. She expressed her concern with what she heard in Alexi's lungs and had the doctor come in for a closer look. Alexi's doctor agreed, this was something more than a simple cold.

Alexi has Bronchiolitis. No that's not a different word for Bronchitis, it's a different illness reserved usually for kids 3-6 months old. She had neutropenia, she was born premature, she has down syndrome. All of these things crossed my mind immediately. When Alexi gets sick, we do pretty well handling it, but when we know it is substantial, we know things can escalate quicker in her so we get pretty nervous.

The good news is, her neutropenia doesn't seem to be a concern as the doctor doesn't think it's necessary to order blood work at this time. However, her having Down Syndrome certainly causes concern with this illness, as her low tone can cause her to tire much more quickly from labored breathing and excessive coughing. Prematurity has also taken a part in all of this, as premature babies are much more likely to contract RSV (Respiratory Syncytial Virus) than other children.

If you've seen Alexi's car seat, you have probably noticed the little stop signs.

If you have been to our home, you probably notice there are not hand towels available near the sinks, just paper towels.
We have canceled countless play dates, visits, and even babysitting, due to others being sick.

RSV is one of the biggest things we have been trying to avoid with these (and other) precautions. It is common among babies 3-6 months and a good bit easier to contract for preemies. RSV is also one of the most common causes for Bronchiolitis. We are hopeful that Alexi doesn't have RSV but it is something we have to keep a close eye out for. It will generally run its course in infants and leave minimal damage. However premature infants and infants with immune system problems are much more vulnerable to the more severe RSV disease that can cause problems we don't need to discuss just yet. Alexi has both of these working against her but has her strength and determination working in her favor.

Treatment: Alexi is taking an antibiotic just to help prevent pneumonia from setting in, and taking albuterol through some fog machine thing ;) to help break up the mucus in her lungs. As well as making sure to get plenty of fluids and rest.

We're remaining optimistic, as Alexi is our little fighter. She has been in great spirits through everything and has overcome worse things than a lung infection already in her short time here. This is one sickness that medicine wont really treat, so as hard as it is, Dad's gonna have to just sit on the sidelines and coach. Go ahead world, throw something else her way, she can take it. Everything she overcomes, makes her stronger.








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