Happy Thursday

* this post is from October 7 but failed to upload* 

Today was a good day. I picked up donations from 2 Moms Club mommies - stuff for the big yard sale this Saturday. Macsen even got an impromptu play date out of it - he had a ton of fun playing with a one of their little girls. He's so smart - he just kept giving her toys, keeping her happy, smart man. 

I was able to cancel another appointment in Atlanta by talking to the doctor on the phone - it's so crazy if I hadn't called and asked if this was a possibility we would have another 8 hr round trip to discuss everything we discussed via phone. Hello modern age! Sheesh! We are putting Macsen on an appetite stimulant - if we make him hungrier he'll try more food or at the very least take more volume of milk. He still needs to put on about 10 lbs for his next surgery. Keeping fingers crossed this will help. It will also make him sleepier - maybe we'll get some better rest at night - a girl can hope right?

He played really well all day - rubbing his face in the cat's fur then running tight circles around her, running down the driveway yelling "ahhhhhhhhh," getting pushed around the yard in his push car so I could talk to the Dr. He played with his daddy - lining up all like colors on his little gear toy all on his own. Aaron was so proud. 

He was so exhausted tonight though. We visited the Derby team at their new practice location - they are still looking for a place to have games. Macsen ran around in the heat with his sisters for about 20 minutes then he was done - sweaty and tired out. His older sister gave hima bottle on the drive home and sang "Moondance." 

He had an awful time at speech therapy yesterday - for 30 minutes he looked at the therapist like she had 2 heads, cried and pointed to the door. He was not impressed by her flash cards or her repetitive sounds. He refused to show her any of his signs, say any of the few words he says. He did the same for his other speech therapist a few days ago - he will not perform if he doesn't want to. He is not about pleasing these people. If they refuse to give him back his toy until he makes the sign for please or ball he will simply give them a look, pointedly turn his back on them and move on to another toy. He will not be bullied. Sigh. Makes me think he knows exactly wha we want from him he just doesn't want to do any of it yet. He does sophisticated things sometimes - pointing out when 1 small piece of a game is missing, following directions in a song he's never heard before, lining up game pieces by color. He is very selective about his books too - his new Cars stories are a favorite but he always goes back to his first book "On the night you were born" from Aunt Judy. 

Where's Macsen? 

Running down the driveway 

Racing me in his push car

Cool dude

Super boy

Macsen is still battling the cold he caught 2 weeks ago. We are managing symptoms with the humidifier, saline nose spray and daily torture sessions with the snot sucker. He's been vomiting more - sorry about your rug Danni- and sweating more but it's all hopefully just related to this nasty virus. 

His cardiology appointment went well last week though. They weighed him at over 23 lbs! And he ran circles around the staff - literally! They haven't seen him in a few months and he wanted to show them how he can now run. He also used the exam table as a slide, grabbed his own Echo probe to perform his own echo, and thwarted the blood pressure cuff in its quest to get a good read by wiggling and refusing to sit still. He was a wild man. 

We went for the appointment and came home the same day. - all the kids were coughing and snotty so we opted for our own beds and we all survived the almost 6 hr round trip road trip. 

That's good to know bc we have to drive to Philly next month - Thanksgiving week- for a cardiac and brain MRI and a heart cath. Not looking forward to the cath:( I 'd take a cath over surgery any day but they are not without their own consideral risk. Thankfully it will all be done at the same time so we only have to hand him over once. 

We are ready for Halloween. We've had tons of fun at a few Fall Festivals. We needed to have a little fun as a fam - the kids were sick their entire Fall break and we stayed in, watched movies and drank lots of honey tea. We were supposed to do more fundraising at the Downtown Fall Fest but the kids needed a dose of normal where they could participate in the costume contest, eat festival food and not think about their brother for a while. 

The yard sale went really well - the girls sold lemonade and told everyone about their brother 's half a heart. They are wonderful advocates. They are so matter of fact about it but occasionally they stop to think and ask me the hard questions- "is he going to be ok? Will he die?" For now I am usually able to get them to focus on how well he is doing and that is enough for them. I still believe looking at the positives is the best way for us to keep moving forward. It's harder to do at times - like when I realize he's wearing a 12 month outfit at 24 months, or I hear other 2 years carrying on a conversation and he won't even say Dada, and especially when he spits out of chokes on the one and only bite of food he's attempted that day- but focusing on all the cant's only shoves me deeper into a dark place where I can't live. So I climb out, put him in his push car and we race down the driveway while he enthusiastically yells out "Ahhhhhhhhhhh" and we both laugh our heads off.

Fundraising yard sale

Some sweet friends have put this yard sale together for us. Our family will be there - the girls want to have a lemonade stand for their brother. Many families have donated items and it should be a great event. Come by if you're local!

Macsen is 2!!!

Macsen was sick for his birthday poor little man. He needed some breathing treatments because he started wheezing and then to top everything off his toe nail came off which really hurt - the pic is the before shot with what his sister called his "button holes" the dr put in to relieve pressure right after he busted it. 

But Macsen still enjoyed smashing his cake and rubbing it in his hair. He loved riding in the remote controlled car his nana sent and reading all the Cars books. Thank you everyone who sent cards and gifts - his favorite movie Cars, a Charlie Brown he likes to hug. He loved his Cars pjs  too but he puked on them - poor guy is having a tough time keeping anything down. He vomited all day today - right after leaving our neighborhood on the way to the pediatrician, outside the pharmacy, all over our bed and right after getting his steroids - twice:( 

Needless to say I haven't had much time to sit down and really think about these 2 years we've had with Macsen - two years we never thought we would have. 2 incredible years filled with amazing memories - painful ones and miraculous ones. And yes sometimes I feel we have lost a lot during this time - years off my life, the hope of ever getting more than 3 hours sleep at a time, many friends, our savings, our innocence at the suffering so many go through on a daily basis but we have gained so much too. Friends and family that fight for Macsen with prayers and emails and calls of support. Other heart moms from around the world and their awesome advice - so much knowledge, understanding and acceptance just a Facebook post away. Our faith that miracles can and do happen every day. And of course our little miracle Bubs who chose us and we can't imagine living without. 

Happy Birthday my love.