I wanted to give you all a update on Lillie and for those who have been praying thank you so much!your e -mails asking how she is doing is greatly appreciated!For you to take the time to say "hey I care and Iam praying means so much to our family!Iam happy to say Lillie's fever has come down completely to 98.5 and I have not had to give her Tylenol since early this morning at 6am and even then it was down to 100.0! because for the last 3 mornings she has woken up with 103.0 to 104.6!So praise God!I have never experienced that high of a fever with any of my kids until now!She is still fussy but I think her body just needs rest now!Lillie is doing just that as I blog!SSSHHHHH!!!:)I don't dare wake her up lol!!!Lets just say she may be little but boy is she a pistol even when she is not sick!!Lets just say Iam so happy to see her feeling back to herself! She is back to drinking,not so much eating but she is getting there!
One thing I did notice was you know how we were giving her everything through her feeding tube? Well today we have not needed to! So you know how I had said she has difficulty swallowing? from her EE? Okay! well when I went to give her medicine she took a little and held it in her mouth and was taking forever to swallow it!Then I asked her "Lillie you want me to give you medicine in your tummy tube?" I wanted to see what she would do in hopes it would tell me something!! and she yelled "YA" and ran into the living room and layed down and waiting for me to give the rest of her meds! what this tells me is that it hurts her bad to swallow because she did not like the fact that we had to hook her up in the first place 3 days ago and now its like she understands that this tube is helping her because of not having to swallow anything!!:( I feel really bad that my daughter has been struggling to eat and it has taken me so long to find this out!I do understand that this was Gods perfect timing and I truly trust his reason for it taking as long as it did to reveal it to tony and I!It just breaks my heart as a mommy to know that she has had issues with swallowing for 2 1/2 years and I didn't understand why!Iam also so thankful to God for answering my prayers!when I asked God if we should remove her tube or not!I know now we are not suppose to any time soon because honestly I have a feeling this tube is going to help her in a huge way!Iam going to try my hardest to put alot of things through the tube so that she does not have to deal with the pain of swallowing!I love how God shows himself in times of trial!its a huge hug and I cant help but to have joy in the fact that He is showing Tony and I things about Lillie in the last 2 weeks!He is amazing and Iam so thankful!
So we went to the doctors today for Addisons follow up from Mondays appt and Lillies Wed appt! He said Addison sounded great and we need to keep her on the meds!Her skin(eczema) on the other hand is infected and he said she was starting to develop staph in several areas on her legs!So lets just say 4 more meds to the collection:)I really should open a pharmacy:)
He said Lillie looks alot better and her fever down and he didnt get the results back yet for the flu! praise God!Although she is getting better he said Lillie has a yeast infection internally meaning from her mouth to her bottom:(she was prescribed a med as well :) Iam sure this doesnt help her swallowing!
One thing I did notice was you know how we were giving her everything through her feeding tube? Well today we have not needed to! So you know how I had said she has difficulty swallowing? from her EE? Okay! well when I went to give her medicine she took a little and held it in her mouth and was taking forever to swallow it!Then I asked her "Lillie you want me to give you medicine in your tummy tube?" I wanted to see what she would do in hopes it would tell me something!! and she yelled "YA" and ran into the living room and layed down and waiting for me to give the rest of her meds! what this tells me is that it hurts her bad to swallow because she did not like the fact that we had to hook her up in the first place 3 days ago and now its like she understands that this tube is helping her because of not having to swallow anything!!:( I feel really bad that my daughter has been struggling to eat and it has taken me so long to find this out!I do understand that this was Gods perfect timing and I truly trust his reason for it taking as long as it did to reveal it to tony and I!It just breaks my heart as a mommy to know that she has had issues with swallowing for 2 1/2 years and I didn't understand why!Iam also so thankful to God for answering my prayers!when I asked God if we should remove her tube or not!I know now we are not suppose to any time soon because honestly I have a feeling this tube is going to help her in a huge way!Iam going to try my hardest to put alot of things through the tube so that she does not have to deal with the pain of swallowing!I love how God shows himself in times of trial!its a huge hug and I cant help but to have joy in the fact that He is showing Tony and I things about Lillie in the last 2 weeks!He is amazing and Iam so thankful!
So we went to the doctors today for Addisons follow up from Mondays appt and Lillies Wed appt! He said Addison sounded great and we need to keep her on the meds!Her skin(eczema) on the other hand is infected and he said she was starting to develop staph in several areas on her legs!So lets just say 4 more meds to the collection:)I really should open a pharmacy:)
He said Lillie looks alot better and her fever down and he didnt get the results back yet for the flu! praise God!Although she is getting better he said Lillie has a yeast infection internally meaning from her mouth to her bottom:(she was prescribed a med as well :) Iam sure this doesnt help her swallowing!
God is good and Iam so happy and thankful for what he has been doing in the last 2 weeks!I cant explain the joy after 2 1/2 years of wondering??????what was causing Lillie to be so little and not thriving! Thank you GOD!!
PS.The post picture was of Auntie and Lillie at Childrens hospital about 6 months ago!She was getting upper GI scope and biopsy that day!didnt want you to think it was recent!!
5 comments:
Oh Crystal, it's like I said to Kristin...I so look forward to the day this good work God has started in each of us is complete! No more pruning and refining! Whoo hoo! Until then, I will be praying for you as I know you are praying for me. My heart is with you. Love you lots!!! ♥
Crystal...thank you so much for the update!! Praise the Lord...and keep us all posted in how we can keep praying for you and your precious family!
Love you!
WOw, like someone said to me "you are either just coming out of a trial or you're just going into one"...I guess if we keep that mindset we will just be better prepared for the work of God in our lives :) Thank you for the update and I remember that day holding Lillie as she was dozing off and acting a bit "silly" after they gave her the meds, she was like eating my shirt or something wasn't she??
Wendy,Ya I think she was acting like a animal wasnt she?? I remember her eating your shirt!Oh wait she was spiting:)and laughing member??That was way funny!you made me laugh!cause you were like "Crystal,what is she doing?She is trying to eat me!":)that was so funny!!
Crystal,
I happened upon your blog after seeing one of your posts on a food chaining blog. My daughter (now 3.5) had some developmental delays and has food sensory issues which have greatly improved over the last 2 years. I just wanted to encourage you to keep doing what you are doing! Though we have never met, I can tell by your words that you are a strong, courageous, amazing advocate for Lilli. I think moms are the toughest most resourceful creatures God created :) Keep hoping.
:) Brooke
"For our light and momentary troubles are achieving for us an eternal glory that far outways them all." II Cor.4:16
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