Happy Belated Mother's Day

Fitos, I hope all the mothers out there had a nice Mother's Day. Coincidentally this year Mother's Day fell on my birthday. Thanks to my husband, I got to spend Friday night out with some girlfriends, one being Abby Fitzgerald, one of my best friends from high school. This was the first time she has seen Nolan since early September, so I know it was nice to reunite. Abby has a son, Liam, just about the same age as Nolan (a few weeks apart). Our daughters are also exactly one week apart! SO, needless to say...I had a good night.

Saturday and yesterday, Matt, my dad, his dad, KC Shaner and Fred Springman built our new fence. We have the first long section of the yard done and it looks amazing. Between this and our garage, these are our main spring projects...we can't wait! Our dog will have his yard back and Riley can run free without us having fear that she is going to leave the yard. I have slowly been getting things together and organized around the house. It takes a lot of time catching up after not being home for six months! Matt and I were really close to moving about a year ago and the more we get some stuff done around here, the less I think I am ready! So many memories here and I feel we need to make some GOOD memories before saying good-bye. Maybe we'll stay here for another year or so. :)

NOLAN. He is doing great. His liver enzymes are still high. We had our routine Monday blood draw this morning, and additional panels were ordered to do further testing into finding out what's causing the levels to stay elevated. Nolan does not appear to be feeling bad, he is tolerating his bolus feeds 4 times a day at 170 ml/hr, and then a very small continuous feed from 9:30 pm - 7:30 am. Our goal is for him to get to 180 ml/hr which we will start tomorrow. He hardly throws up (today only once), so overall we are happy with this.

Our nurses are amazing. They all truly love our little guy and we have such a great bond with them. We feel SO lucky to have Bayada Pediatrics in our area! During the day he has been receiving one hour of PT a week and 90 minutes of OT a week (which is broken up to 30 minutes, 3 times a week). The nurses work on both therapies throughout the day and he has been doing well with the oral feeds. Both the therapists are great. I think he will be crawling/walking by the end of the summer, if not sooner.

Wednesday we leave for Pittsburgh. Nolan has a day of appointments on Thursday, then Friday is his biopsy. It is always nerve wracking to go in for a biopsy of his heart, but he seems to be doing so well, we do not anticipate any rejection going on. I am anxious to go...I have not been back to the hospital since we left, so I am just preparing myself for "hospital mode." (whatever that means) I look forward to seeing some people at CHP, most importantly giving Ashley and Trevor Halligan big hugs (Oliver's parents); please keep them in your prayers tonight as I know they are spending their last day with Oliver. They have had family and friends travel in from all over to support them. They are all so loved. I hope they all feel it.

That is the latest. I will definitely be keeping updates while we are back in Pittsburgh and will try my hardest to every day. Tonight's a less busy night for us - Riley took a trip with my dad down to Florida to visit my mom, who is helping out her mom as she transitions into assisted living. She had her first trip on a plane with "her pop." I am so jealous! And I miss her SO much! I know she is going to have a blast...and I know it's good for my Nanny to see Riley. She brings a smile to your face.

Everyone keep #olliestrong tonight.

#nhos