So my face is fat again...and my butt cheeks are fat.....and just my right hand is fat.....not as bad as last time but it's a poofy start. I was sleeping all morning laying on my right side, not moving much and when Mom went to change my diaper, she rolled me over and my right eye was completely swollen shut!....she was kind of startled and called Nurse Ann Marie and Doc's nurse Marleen. They were both kind of baffled and couldn't tie it to anything....but it is so hard with my condition to know what is going on in the cells of my body and organs and stuff. Nurse Ann Marie said I look fine other than the slight poofiness and even after Mom rolled me over, the fluid must have dispersed throughout the rest of the body because my eye is ok now.....but the fluid can just move throughout and make other areas swollen. Ann Marie listened to my lungs which sounded clear. My urine has been this odd shade of orange for over a week now and no one can figure out why. I am a tough case. All my medical friends give their best and I thank them for that.....I like to give them a challenge. So while I was blimping up , Mom was getting her flower garden together, Dad and I were baking more "Blessed Friends of Jacob Bread," and Joshua & Jonathan where playing with the Millennium Falcon and watching Stewart Little....how those two things go together, we will never know....all us Fahmer Boys are mysterious! So, I am just going to take it easy. Mom is going to rotate me like a rotisserie chicken so I don't blimp up on one side again.....what a great mind image that is! Pray for drainage, wisdom for Mom and Dad, creative thinking for my doctors (since I am not a standard case), and just strength for us all. Thanks guys. Love you lots. P.S.~ Hi fan Leah in Seattle....I hope you are not "Sleepless in Seattle" tonight! I will update as often as I can. Mom & Dad's internet is working now but who knows if that will remain. I will have someone update from somewhere if we learn anything new. Sorry for the delay. Everyone remember: No news is good news. If something is terribly wrong, it will be posted so please do not fear if you have no word of anything.
Thursday, May 29, 2008
Day 137! ~ I'm Pooffy Again!
So my face is fat again...and my butt cheeks are fat.....and just my right hand is fat.....not as bad as last time but it's a poofy start. I was sleeping all morning laying on my right side, not moving much and when Mom went to change my diaper, she rolled me over and my right eye was completely swollen shut!....she was kind of startled and called Nurse Ann Marie and Doc's nurse Marleen. They were both kind of baffled and couldn't tie it to anything....but it is so hard with my condition to know what is going on in the cells of my body and organs and stuff. Nurse Ann Marie said I look fine other than the slight poofiness and even after Mom rolled me over, the fluid must have dispersed throughout the rest of the body because my eye is ok now.....but the fluid can just move throughout and make other areas swollen. Ann Marie listened to my lungs which sounded clear. My urine has been this odd shade of orange for over a week now and no one can figure out why. I am a tough case. All my medical friends give their best and I thank them for that.....I like to give them a challenge. So while I was blimping up , Mom was getting her flower garden together, Dad and I were baking more "Blessed Friends of Jacob Bread," and Joshua & Jonathan where playing with the Millennium Falcon and watching Stewart Little....how those two things go together, we will never know....all us Fahmer Boys are mysterious! So, I am just going to take it easy. Mom is going to rotate me like a rotisserie chicken so I don't blimp up on one side again.....what a great mind image that is! Pray for drainage, wisdom for Mom and Dad, creative thinking for my doctors (since I am not a standard case), and just strength for us all. Thanks guys. Love you lots. P.S.~ Hi fan Leah in Seattle....I hope you are not "Sleepless in Seattle" tonight! I will update as often as I can. Mom & Dad's internet is working now but who knows if that will remain. I will have someone update from somewhere if we learn anything new. Sorry for the delay. Everyone remember: No news is good news. If something is terribly wrong, it will be posted so please do not fear if you have no word of anything.
Subscribe to:
Post Comments (Atom)
11 comments:
Oh Jacob,
I am praying for you sweetie and let your mommy and daddy know I am praying for them too. For drainage, wisdom and doctors answers. God is watching over you.
Love, Laurie in Ca.
I am finally beginning to understand what it means to have every cell in Jacob's body affected by the T-18. He can't grow because his cells probably don't process nutrients like they are supposed to. His organs work differently, or don't work, etc... My heart is touched more than ever by Jacob's life that of all your family members as you celebrate Jacob's life.
I will pray for you all as you walk the path of this latest mystery.
BTW, I know that when my grandmother had hospice, they brought a special mattress pad that had air chambers and a pump. The purpose was to prevent pressure sores, or, as in Jacob's case, localized edema. The pump cycled the air throughout the chambers in alternating cycles, allowing better circulation. Perhaps there is something available in a pediatric size for Jacob? Maybe his swing can help move the fluid?
I hope you are getting all the help and love and support that you need.
Prayers for Baby Jacob and his family. We are thinking of you!
Hang in there sweet boy. Prayers are coming from Illinois toinight.
Karen, Oh I am so touch by your sweet words! Little Jacob is so sweet! I am so glad you found my site because now I can read yours each day! Please know I will lift your family up (especially little Jacob) in prayer each day! He is a tender blessing from our Father! You are loved dearly to recieve such a beautiful gift... What a treasure of love and mercies our Lord and Savior has intrusted to you. Thank you again for visiting, come often friend and I will vist you too! A 1st quick note but a cherished friend forever, my sister in Christ. Tamara p.s. would you mind if I put a link to your site on Abigail's? Its a great reminder to pray for these preciouse little ones each day. Let me know?
Hello sweet Jacob, I have been praying for you this evening...
"Heavenly Father, I call upon you as the Great Physician to relieve the physical pain and fluids from Jacob. Please restore him so that he feels better and functions normally. Thanks for bringing this precious boy and his family into my life - what a blessing! Please surround Jacob and his family with your angels of healing and protection."
I'm sending a big "Jacob hug" your way. Please know that you are loved and wrapped in prayer!
With much love - Lynne B.
I am praying for you little guy. You just keep thinking up ways to keep all your Doc's on their toes so they can learn more stuff about our fabulously created bodies. Have a restful night! Praying!
Cindy ~ Phoenix
Praying!
Baby Jacob - Hi From Leah in Seattle! Imagine my joy and excitement to see a "shout out" from my favorite little guy on your blog. I check up on you every day and you're always in my thoughts and prayers! Much love to you and your family and a big "Jacob" hug to you. Thank you for being an inspiration each and every day! Hugs and Love from Leah in Seattle
Jacob & Family...
Your story has truly touched my spirit and soul. I admire your strenth and dedication through the trials and triumphs. Your story has made me re-evaluate my own life. Your journey is truly inspiring and please know that my prayers and love go out to all of you!
God Bless,
Lorraine in Pa.
Karen, Thanks for the visit and the kind words. You are so busy and it means a great deal. I am praying for lil man to get rid of this excess fluid. I wish him comfort and peace. Give him hug from Annabel. Cathy & Annabel
Post a Comment