Home sweet home
Finally, we decided we are okay to leave the Ronald McDonald and go home. It has been tough to leave there since it was so close to the hospital and also a great facility. We did laundry every other day and we had meals prepared for us which we will definitely miss. It is great to be home but also scary at the same time. We are still learning to get a rhythm down, like feeding schedule, nap schedule, and getting back to work.
Me and angel are still off work until we are able to find a baby sitter and also getting our house together for Miles. We had to move things around to make room for his medication and all his medical supplies. We also plan to have another Garage Sale to get rid of more stuff.
It has definitely been a long journey and we still have so much ahead. Our minds and body are so exhausted from all the stress of making sure Miles is ok and getting use to the fact his heart is ok. Miles is down to only 10 medications which is great so it's slowly working its way down. He will have 2 medications for sure for the rest of his life.
We again would like to Thank everyone for your support, without you I don't think we would be able to survive. Not only for your generous donations, your continuous prayers.
Right now Miles is going through many emotions, teething, being at home, growing, and getting use to some of medications not in his system. It's really hard to make the difference between baby habits to heart problems. Whenever he has a change of habit and doesn't feel himself we have to call the doctors. We already visited the Emergency Room again because of stuff like this. We are expected to have many visits to the ER and our Pediactrician. We will constantly be at the doctors with any changes in Miles as a precaution. It's expected to be worried about heart rejection because it can happen Anytime. After a year they don't expect rejections much, but it's just not that serious. So we are still restricted on how many people he is exposed to, so they say usually after 6 months its easier to be around more people but still need to wear a mask. Anybody who is sick cannot be around Miles because that can send him to the ER, any cough, sore throat, sneeze so its hard to get visitors. So we apologize to everyone because we are not able to attend any birthday parties this year due to Miles condition. We have to really minimize his exposure to people for awhile. Also he hates wearing the mask which is difficult to take him out because he cries and gets irritable.
We still plan to have more fundraisers so if anyone has any more ideas please contact us. Bills are definitely piling up high so every little help counts. We are struggling to get back to reality and we truly appreciate everyone's love and support. I will keep you updated as much as I can and please continue to pray.
Roxanne & Angel