We've got love!

These two missed each other terribly while Porter was in the hospital. They were so happy to tackle each other and get back into their routine. We laid low this weekend. Porter shared his cold with everyone, so we all took some time to rest up and get better. The two of them spent the weekend putting on their backpacks and pretending to ride the bus, reading books to each other and watching some Alex & Leah (Signing Time). 

The kids had fun making some valentine's for daddy and a special friend. 

We had some more snow....Penny helped us plow the driveway with snow angels. 

And, these two have been playing "bus" ever since Penny got a backpack for her birthday. The ride the pretend bus to kindergarten and tell me that they don't need me to drive them any more because they can take the bus. Penny makes the rules and Porter happily follows in this game. It's so much fun to watch them play together. 

Maybe downtime was just what we needed....we're always rushing around to the next event. Even though I ended up on antibiotics with my sinus infection, it was a good weekend with lots of love!

Goodnight 4!

There's been a lot happening in our home. Tonight, Penny says goodnight to 4. When she wakes up, she'll be 5! She's been having a blast celebrating in advance, as the Birthday Princess crown came out about two weeks before her birthday.

She celebrated with a few friends at a cooking party at a local cooking store. It was so much fun! The girls made their own pizzas and popcorn and decorated cupcakes. Very age appropriate and great for a small group party. I think they all had a blast, especially when they got to sing Karaoke as they finished up.

In the meantime, Mr. P has been feeling under the weather. What we thought was just a simple virus after a trip to the pediatrician turned into a full-out hospital stay. We took Porter to the doctor on Friday, as he was running a fever and showed some virus symptoms. The doctor said he didn't think it was flu or anything serious and to continue with our typical course of care for a virus, including our asthma care plan, if needed. We gave him some motrin around midnight that night and on Saturday morning, he woke up fever-free, happy and playful. Papa came to visit so we could both go to Penny's birthday party. While we were gone, his fever spiked and he became very sick, very quickly. Papa did everything that we had asked of him- gave tylenol and albuterol. But, Mr. P still had trouble breathing and started showing signs of respiratory distress (not severe, but signs). We checked his "pulse ox" and were surprised by how low it was. We talked to the pediatrician and headed off to Bryn Mawr hospital. We hoped some deep suction and nebulizer treatments in the ER would do the trick. After three one-hour continuous nebulizer treatments were unsuccessful, and after increasing the dose of oxygen that he could receive as much as they were comfortable, the docs at Bryn Mawr decided to send him to CHOP for ICU care. (Papa came to the ER with us and was a huge help!)

Mr. P had his first ambulance ride. The steroids and magnesium that the Bryn Mawr docs administered finally kicked in during the ambulance ride and Mr. P was stable as could be (but with high doses of Oxygen) by the time we arrived at CHOP. We were admitted to the PICU, still on high flow oxygen. Throughout the night, he was able to wean off high flow, down to lower dose oxygen. 

On Saturday, we were transferred to a General Pediatric floor, under the care of the Allergy & Asthma team. He tested positive for metapneumo virus, one that can hit kids with reactive airway disease (asthma  under age 3) pretty hard. It was especially nerve wracking for mommy, as it was so different from the RSV that he had last winter. RSV responded well to albuterol...this one didn't.

So here we sit, at CHOP, on goodnight 4 night. My heart is wishing I could be two places at once. But, we're very hopeful that we'll head home tomorrow, to reunite with our Big 5 year old. To say Porter and I miss her is an understatement. We're very thankful that Mr. P is responding to treatments and that he was up and moving today! 

Many thanks to daddy, Papa, Nana and the aunties for holding down the fort while we were away. And to everyone who offered to help and sent prayers and positive thoughts. We were, once again, greatly impressed with all the amazing things happening here at CHOP. From the volunteers who manned the Wawa Coffee Cart this morning to getting to have real conversations with the nurses talking about the things they love about CHOP, it really is a great place to be. I'm hoping I can take some of their ideas back to the CHOP Foundation and turn them into a reality.

Walking!

Last week, I was talking with both Porter's Physical Therapist and another Down syndrome mom about how it can be difficult to "call" a milestone. Progress can be so slow on some things. Each child with Down syndrome is different and while Porter excels in many areas, physical skills (gross motor) are his biggest delay. He has REALLY low muscle tone. With crawling, he did an army crawl for months before he got up on hands and knees and crawled. And, with walking, it's been slow and steady progress. While he took his first official steps months ago, I wouldn't say that he was walking. For weeks, we've been stuck at 11 steps. And, they're always on his terms. He gauges the distance between point A and point B and you can see his little brain thinking "can I make it?"

His teachers have been encouraging him to walk. They've been building it into the routine. He's been walking from the table to the trash can, carrying his trash (less than 11 steps) pretty consistently.
Last week on Thursday, he decided it was the day...the day to smash his record. He surprised his teachers by walking short distances on his own from activity to activity throughout the day. He floored his PT when he decided to take 53 steps without stopping or holding onto anything during PT that afternoon. He decided, on his terms, that it would be the day that we can really say "Porter can walk." He still crawls at times...after all, he's fast and furious there. But he's officially walking more than he is crawling. Sometimes it's holding the hand of a friend. More than ever before, it's taking independent steps. We've still got a long way to go, but we're going on foot! Exciting times!

Cableas

We drive by Cabelas all the time on our way home to Nana & Papa's house, but we don't stop in often enough. Every trip is an adventure. The kids favorite part of the store is the aquarium. On this most recent visit, there was even a scuba diver in the tank who was teaching us about the giant catfish. 

 

The exhibits are great. Porter loves seeing the elephant. 

 

And the polar bear that was supposed to be the focus of the next photo...glad I got his arm :) 

Growing up, hunting and fishing were a big part of my life. My dad and grandfather took us fishing often as kids. And they hunted. Each deer season, we celebrated the day they'd bring home a deer because it meant we'd have a freezer full of meat to make it through the winter. My kids are growing up in such a different way, in such a different world. I think it's still important for them to understand how our eco system works. 

 

I know they'll spend time learning how to fish in the years ahead with my dad. I don't know if they'll learn to hunt (that skill wasn't passed down to us girls. Although we were taught gun safety and took trips to the shooting range, we never went out to hunt...they always joked that I talked too much). I want them to learn too. Cabelas is a great place to start!