6 MONTHS OLD
Sorry it has been a while since I have blogged. Sometimes it is much easier to post up on Instagram (@heartofmaia)a pic and how Maia, Marcus or we are doing at that time. Lately when I seen baby girls I have been getting down, as I want Maia to come home, a little selfish but I would love waking up and being able to see her in her crib and start the day. As Marcus learned in school that is a want and not a need. The need at this time is to make sure Maia is safe and is ready to come home.
This part of the blog I started a couple weeks ago. With Marissa we counted every second we were able to spend with her, 2580 to be exact. In that time God blessed us with her presence, we were able to hold, kiss, hug her, look into her eyes, Marcus held Marissa, kissed her, sang to her twinkle twinkle little start and rock a bye baby (which made everyone in the room cry with joy). We baptized her in the name of The Lord and then we handed her over as angel.
With Maia we have been counting the months, now 6 1/2 months old, which sounds like a long time it is really short in the life she is going to live. UCSF Benioff Children's Hospital, Maia's first home and our second home. Thank you all.
The other day I was browsing through pics and remembered back when Maia was not doing as good, and thanked God and everyone that has been on Mighty Maia Fight Team, for all the love, support and prayers. At times we think the hard time are behind us: it is only one little baby step in her life to come. Maia's pain tolerance and strength has made her the best fighter I know. Her fight is not over and never will be. As we are reminded that in between the Norwood and Glenn surgery a cold or a flu can kill her. I am writing this part just to remind myself and everyone that reads this that this is reality, death is just a cough or sneeze away, so cover your mouth, wash your hands and hand sanitize.
The time really has flown by. From working to not working, to celebrating numerous holidays, birthdays, weddings, to baptizing her, and now school for Marcus is more than half over. We started our journey a week before he started kindergarten and the way it sounds we will be here when he starts summer vacation. As for time it feels like it stands still, we have to ask what day it is as were here everyday at least one of us if not both. We know Thursdays because Marcus goes to bingo and we know Sunday because mother comes. But other than that time goes by like the seasons, fall, winter, now spring and soon summer.
Rizza, Rommel and I have been graduating little steps here at UCSF. From suctioning her through her trach tube, to trach tie replacement to trach tube replacement. All of this has become or is becoming second nature and the Mighty Maia Fight Team here is so happy that were so involved in Miaia's care. Our next step we are going to get certified in CPR mainly for babies. We want to be as prepared as possible for any situation that may come up, not just for Maia but for anyone around. Were still a little shy in sharing our adventure sometimes but some days are better then others. We do share in FB and Instagram, but actually talking to new people sometimes is what I am referring to. We go to Philz Coffee in the Mission and as we get to know more names of the staff we have started sharing. Then again how do you start a conversation how you doing? Oh well my daughter is in the hospital, sometimes odd, sometimes works, sometimes is the right time and sometimes not. Were not to worried about it but we do want to share our adventure to inspire others that everyday is a good day, so value it.
As for Maia, Rizza will put up her blog and explain details but she is doing goooood. I did want to say that we do read everyone's post, see your likes and your comments. We do not always hit like, or comment back but we do appreciate the support.
Marcus is doing good. Had his 1st T-ball game and had nothing but fun. He is getting ready to test for his next belt in Taekwondo, and he is just enjoying life. He is a little sad that Maia is not coming home and expresses it often. Marcus does know that we do have to be patient and wait till the Dr.s okay her coming home.
Sorry it has been a while since I have blogged. Sometimes it is much easier to post up on Instagram (@heartofmaia)a pic and how Maia, Marcus or we are doing at that time. Lately when I seen baby girls I have been getting down, as I want Maia to come home, a little selfish but I would love waking up and being able to see her in her crib and start the day. As Marcus learned in school that is a want and not a need. The need at this time is to make sure Maia is safe and is ready to come home.
This part of the blog I started a couple weeks ago. With Marissa we counted every second we were able to spend with her, 2580 to be exact. In that time God blessed us with her presence, we were able to hold, kiss, hug her, look into her eyes, Marcus held Marissa, kissed her, sang to her twinkle twinkle little start and rock a bye baby (which made everyone in the room cry with joy). We baptized her in the name of The Lord and then we handed her over as angel.
The other day I was browsing through pics and remembered back when Maia was not doing as good, and thanked God and everyone that has been on Mighty Maia Fight Team, for all the love, support and prayers. At times we think the hard time are behind us: it is only one little baby step in her life to come. Maia's pain tolerance and strength has made her the best fighter I know. Her fight is not over and never will be. As we are reminded that in between the Norwood and Glenn surgery a cold or a flu can kill her. I am writing this part just to remind myself and everyone that reads this that this is reality, death is just a cough or sneeze away, so cover your mouth, wash your hands and hand sanitize.
The time really has flown by. From working to not working, to celebrating numerous holidays, birthdays, weddings, to baptizing her, and now school for Marcus is more than half over. We started our journey a week before he started kindergarten and the way it sounds we will be here when he starts summer vacation. As for time it feels like it stands still, we have to ask what day it is as were here everyday at least one of us if not both. We know Thursdays because Marcus goes to bingo and we know Sunday because mother comes. But other than that time goes by like the seasons, fall, winter, now spring and soon summer.
Rizza, Rommel and I have been graduating little steps here at UCSF. From suctioning her through her trach tube, to trach tie replacement to trach tube replacement. All of this has become or is becoming second nature and the Mighty Maia Fight Team here is so happy that were so involved in Miaia's care. Our next step we are going to get certified in CPR mainly for babies. We want to be as prepared as possible for any situation that may come up, not just for Maia but for anyone around. Were still a little shy in sharing our adventure sometimes but some days are better then others. We do share in FB and Instagram, but actually talking to new people sometimes is what I am referring to. We go to Philz Coffee in the Mission and as we get to know more names of the staff we have started sharing. Then again how do you start a conversation how you doing? Oh well my daughter is in the hospital, sometimes odd, sometimes works, sometimes is the right time and sometimes not. Were not to worried about it but we do want to share our adventure to inspire others that everyday is a good day, so value it.
As for Maia, Rizza will put up her blog and explain details but she is doing goooood. I did want to say that we do read everyone's post, see your likes and your comments. We do not always hit like, or comment back but we do appreciate the support.
Marcus is doing good. Had his 1st T-ball game and had nothing but fun. He is getting ready to test for his next belt in Taekwondo, and he is just enjoying life. He is a little sad that Maia is not coming home and expresses it often. Marcus does know that we do have to be patient and wait till the Dr.s okay her coming home.
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