Friday, February 27, 2015

Goodnight Two

Goodnight two! 
You'll be three when you wake. Sometimes it's hard to believe all the joy you've brought to our lives. Before you were born, we had so many worries and fears. You've taught us to worry less, love more and celebrate the small stuff. You've grown so much this year...it's been so cool to see you hit milestones. In the past month, you've decided to start walking. Seeing you dance at Chuck-E-Cheese today made my heart so happy!
You followed right along and hardly missed a beat. You had fun and we had fun right along with you. 
You're saying new words and you have big opinions. There are days when you get frustrated with Mommy because you've voiced an opinion and didn't get the response you hoped for, so we're working together to try to help you understand.  
You love all things Elmo and Cookie Monster. You love your new big boy room (we end up sleeping there when you wake in the middle of the night and as soon...we're waiting on a few key safety tools before we make the move permanent). You adore your big sister and I so enjoy seeing the two of you make up games and play together. You're an amazing big brother already. I love to see you kiss my belly. You're doing so well in your new classroom at school. You've got the routine down and it's helping you succeed. I love seeing how excited your friends are to see you walking. They're so proud of you too! 
Your favorite foods are mac & cheese, pizza, blueberries and grapes. You love to read books and listen to music. You are counting to seven consistently and you sometimes make it to ten. You can say the alphabet, know your shapes and colors and can navigate the school computer like nobody's business. You can turn on the tv at home and know how to get Elmo videos on the computer. We have amazing adventures together. Be it the grocery store, library or just a drive in the car, you make it more fun! You've been waking at night since the hospital, usually around 5am. You fall back asleep if I come snuggle you, but you'll be up and awake for the whole day if I don't. 
We love you so much and we are so happy you're part of our family! Goodnight two...it's been a good year...we can't wait to see where three takes you. Love you Gugs! 

Monday, February 16, 2015

Prayer

The power of prayer is amazing. While I prayed long and hard in the ER, I was also really scared. When there were three doctors and a PA in our ER room, along with two respiratory therapists, who jointly decided that Porter was sick enough that he needed ICU care and started talking about the possibility of CPAP, I realized that he was much sicker than I thought. They arranged for transport to CHOP via ambulance. While my dad stayed with Porter, I had to step out of the room to call RC, as we had no reception in the room. While I was on the phone, a nurse from the adult ER asked if I was the mom from room 27 and placed this in my hand: 
This little angel helped remind me that I may not be in control, but we've got guardian angels watching over us on this journey. Asthma is scary business. Luckily, Porter's asthma triggers seem to be viruses and spring allergies (which are more controllable). We know the triggers, we address the triggers. We are thankful for the team of doctors and nurses who take such good care of him. And we hope and pray for all the kids whose lungs sometimes need a little help to make it through a sickness. Prayers work! Thank you for your prayers!

Sunday, February 15, 2015

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!

Tuesday, February 10, 2015

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.

Tuesday, February 3, 2015

Walking!

video
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!