Oh darling, none of us can control our children's future. I know you and Phil and making sure Lillian has every opportunity in life and is making sure she gets the best treatment for her PWS.
You are an amazing and wonderful Mom and we all love you xoxo
((hugs)) One day there will be a cure for the hunger. Until then you will be a wonderful mom. And Lillian with be telling everyone how much she love YOU.
Praying for you... I know that being a mom to a new baby is challenging and more so when they have special needs. Hang in there, because you ARE her biggest advocate:)
Just stopped by because I've seen Lillians "button" on other blogs I've visited. The PWS also caught my eye. I went to school with a young man with PWS back in the 80's; also had a cousin with the disorder, so I know something of the challenge it presents. Read a few of your older blogs, too. It's definitely okay to seek help if you need it: care for the caregiver is essential. You have a tremendous job ahead of you, but like you said yourself Lillian's sweet face and a lot of faith will get you through each step. You probably have more prayer warriors than you realize. I will be one of them, too. -EW http://eastlynandcompany.blogspot.com
I remember watching this video when Lucy was around a year old so I understand exactly how it makes you feel. As time goes on although I am aware of the challenges ahead,they dont keep me awake any longer and a kind of acceptance kicks in. You seem like an amazing mum and Lillian will thrive and achieve just from the love you give her
oh my this video...there are no words. my daughter has a 4q chromosome deletion, she suffers from hypotonia, lack of appetite, breathing/airway issues (has a trach) development delays. Even though she doesn't have prader-willi I think this video touched me the same way it touched you. Your daughter is beautiful by the way and I look forward to following your blog.
oh my this video...I have no words for it. My daughter has a chromosome 4q deletion and suffers from hypotonia, lack of appetite, breathing/airway issue (has a trach)development delays and the list could go on. Even though she does not have prader-willi I think this might have touched me the same way it touched you... you will get through this and both you and your daughter will thrive together.
Oh darling, none of us can control our children's future. I know you and Phil and making sure Lillian has every opportunity in life and is making sure she gets the best treatment for her PWS.
ReplyDeleteYou are an amazing and wonderful Mom and we all love you xoxo
Wow... that's powerful. There is so much love between them. You are such a strong woman adn you take such great care of Lillian. Lots of love to you.
ReplyDelete((hugs)) One day there will be a cure for the hunger. Until then you will be a wonderful mom. And Lillian with be telling everyone how much she love YOU.
ReplyDeletePraying for you... I know that being a mom to a new baby is challenging and more so when they have special needs. Hang in there, because you ARE her biggest advocate:)
ReplyDeleteJust stopped by because I've seen Lillians "button" on other blogs I've visited. The PWS also caught my eye. I went to school with a young man with PWS back in the 80's; also had a cousin with the disorder, so I know something of the challenge it presents. Read a few of your older blogs, too. It's definitely okay to seek help if you need it: care for the caregiver is essential. You have a tremendous job ahead of you, but like you said yourself Lillian's sweet face and a lot of faith will get you through each step. You probably have more prayer warriors than you realize. I will be one of them, too. -EW
ReplyDeletehttp://eastlynandcompany.blogspot.com
I remember watching this video when Lucy was around a year old so I understand exactly how it makes you feel.
ReplyDeleteAs time goes on although I am aware of the challenges ahead,they dont keep me awake any longer and a kind of acceptance kicks in.
You seem like an amazing mum and Lillian will thrive and achieve just from the love you give her
oh my this video...there are no words. my daughter has a 4q chromosome deletion, she suffers from hypotonia, lack of appetite, breathing/airway issues (has a trach) development delays. Even though she doesn't have prader-willi I think this video touched me the same way it touched you. Your daughter is beautiful by the way and I look forward to following your blog.
ReplyDeleteoh my this video...I have no words for it. My daughter has a chromosome 4q deletion and suffers from hypotonia, lack of appetite, breathing/airway issue (has a trach)development delays and the list could go on. Even though she does not have prader-willi I think this might have touched me the same way it touched you... you will get through this and both you and your daughter will thrive together.
ReplyDeleteYour new dedicated follower :)