New Normal

I put this new picture of our family up on the blog because it was the first summer outing we did (Deanna Rose) and I remember that day SO WELL for many reasons. I knew we would not have many chances to do things as a family of four all summer. I knew the boys would not be able to spend a lot of time together. I also knew how HOT it gets and spending a whole day outside would be few and far between. Luckily, Tim and I have had GORGEOUS weather and spend most days outside as much as possible in between nap time and picc antibiotic dosing mid day. I told Tim today that I am starting to forget what its like having 2 kids and that we might need a training course on parenting twins when we get home. Preston is SO easy going and aside from his medical issues, he is a breeze! We have been blessed with a kiddo who sits on the bed for a full hour and a 1/2 each afternoon to receive his picc meds and then a full feeding via g-tube. He plays with his toys and watches a few thomas episodes. He is a total snuggle bug and he loves goofing around with us while we sit with him. Then he naps in his crib. Once these picc meds are over (8 days to go- yay!) we are going to feel so free! Its a total pain to have to stop what we are doing mid day to come back to our room to do an hour worth of meds and food. We would do the meds 'on the go' but they have to be administered in a sterile manner so you can't just give them anywhere. :( It could be worse so we are not complaining! Tim will have Preston for a week on his own in a week and it just so happens that the picc meds end the day before I leave so Tim is going to have it much easier which makes me feel much better!!! :) I have been informed they are going on a local brew tour so thank goodness those meds won't get in the way of that important outing! LOL :) 

Today we got up and out the door early to stroll the local farmers market called Fenway Market. It was very cool. My aunt sent us a paper clipping of 5 free things to do in Cincinnati and Fenway Market was one of them. We want to go back next weekend when my in-laws are in town and have breakfast there!  We also went last night for a late evening site seeing walk to Mt. Adams. It was also one of the 5 free things to do. We need FREE right now in our life! :-) VERY peaceful, gorgeous view of the city, a great walking trail around a gorgeous fountain. Got home later than usual but it was worth it. If you haven't noticed, we now call this place 'home.' The new normal of living here has set in 100%. Tim and I were joking that we feel like we live in a compound. LOL The gates around the RMH and all the security and SAME families we see day in and day out makes it feel that way. Speaking of gates, I just hate that the surrounding neighborhood is such a poor community. :( It is not safe to leave alone. We have been told ALOT to only head towards the hospital and don't go any other direction. Another reason I am VERY grateful Tim is with me on this journey. Most of the mom's never leave RMH. I would go CRAZY!!!! Even the farmers market neighborhood was questionable once you drove out of the parking lot and down the street. I saw a homeless man sleeping on a slide in a government housing playground with a little 4 year old girl next to him on a swing. :( Just broke my heart.  

Let's talk about broken hearts. I have been REALLY affected by a few of the families we have met here and their situations. If I ever feel down, I let myself have a pity party for about 5 min. and then I am over it after reminding myself how fortunate we are with our situation. We met a nice couple with an 8 year old son a few nights ago. Tim talked to the dad while the boys played on the playground. Their son has autism and had a tracy (we noticed a scar on his neck and assumed it was due to a trach). He had the same LTR surgery as Preston 3 times and each surgery failed. :( They lost the skin grafts each time for a different reason. They had these surgeries done elsewhere and finally came to Cincinnati and his 4th surgery was a success. The dad told Tim that we certainly picked the right place to be for this surgery. First off, YAY for confirming we are in the BEST place but I was HORRIFIED and SICKENED this family has been through what we are going thru 4 times. Side note: I am believing with all my might that his bronch results we receive on the 29th will show the grafts took and everything looks amazing! I am trusting that we did pick the right place for this surgery! One mom I met this morning in the laundry room has been here for 16 MONTHS! Yes, you read that correctly......16 months! Her 2 1/2 year old daughter is waiting for a bowel and liver transplant and they have 5 and 9 year old sons who split their school year up last year to attend school in Ohio to stay with their mom and sister. They live in Oklahoma and made the decision to move here this summer permanently. So she was doing laundry to pack for their move. MY HEART SANK ON SO MANY LEVELS FOR THIS FAMILY! Lastly, Tim and I were eating dinner tonight in the cafeteria and a super friendly couple asked about Preston's trach and as we shared details with them and our eagerness for decannulation they told us their daughter is 18 years old and will NEVER get her trach out or speak (LOTS of reasons that will leave you in tears so I will spare you the sad details). What do you say to that? Lots of prayers for these 3 wonderful families can certainly be said if you want to add them to your prayer list! 

I didn't intend for my post to be this long. This journey is full of so much and I have found that writing before bed to capture our day really helps me sleep at night. I want the boys to read these details years from now with my memories being fresh in the moment. Speaking of sleep, Preston is having ALOT of secretions and is needing suctioned 4-5 times each night. I have the super early wake up call at 5:30am to administer the picc meds so Tim takes the middle of the night shifts to suction. We have never been more grateful for Amy. She is one hell of a night nurse and she is the reason why I don't have bags under my eyes the size of silver dollars.......the sleep we get at home is no longer taken for granted EVER!!!! We can't wait for this stint to come out and his secretions to lessen. I think he will sleep better too instead of coughing so much! We were having 0-1 suctions per night before surgery and going days without suctioning during the day. Only 10 more days till the stint is removed! YAY! 

In closing, I hear it is HOT in KC and lots of water activities are keeping everyone cool. Apparently, my little Reidy is a total fishy in the water! I can't wait to hop off the plane in a few weeks, get my swim suit on, scoop him up and take him to the pool for the first time (for me anyway). Until then, I will settle for my phone calls I have with him where he smiles at the phone when I talk, waves at the phone, and then tells me the sounds of all the animals I name. Just hearing his voice is confirmation that he is still with me even if its thru a cell phone connection rather than in person.