Cayman's head is starting to drastically sink in again! WHY? Why is it sinking?! We haven't done anything different with her in the last week!! I emailed pictures to her Neurosurgeon and called his office. I'm guessing we'll be taking her up to Ann Arbor tomorrow to get the shunt setting changed. We were so excited that this whole week we didn't have any appointments we had to drag ourselves and Cayman to. Why can't something continuously go smooth for awhile. And I know that's not true. Because there are a lot of things that are going smoothly and have been, like Cayman eating and not needing her G-tube. When I get this tired and frustrated my mind focuses on the the areas that I want to be different. I told God that I don't even ask for things to be easy...just normal difficult! Right now I am so frustrated and burned out from worrying so much about Cayman's health. If the shunt continues to over drain her head fluid then we're looking at another surgery for her! I just want to be at home with my baby and my husband. I enjoy my life at home! I feel like there's someone or something against me, that doesn't want me to be at home happy. Obviously I'm having a bad day and am in need of extra encouragement...or maybe just a good nap! Any of that could help!
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I can tell how frustrated you are! I'm so sorry they haven't gotten it figured out yet. It is so hard not to worry about your little one. When we first brought Miles home, he had his shunt reprogrammed several times. He still has fluid built up around the tubing on the side of his head that won't go away. Don't worry, they will get it all figured out. I know it is such a pain and it seems like all you ever do is drive back and forth from the Dr. There is a good chance that it just needs to be reprogrammed once and then you'll be fine. Hang in there!! Let us know how everything turns out. :)
I love you Kris!! I hope your day gets to be better, and that Cayman's shut can be fixed with out surgery! :):)
Kristen,
I sit here and cry as I read your post. I have had the same feelings the last couple weeks. I am in no way comparing my situation to yours, please understand that. However, my daughter has severe eczema and she bleeds and gets infections continuously. Sometimes, I hold her at night because she can't stop crying from the itching and pain and I sob and think to myself, "Why, God? Why does this little tiny baby have to suffer so much?" I think of all the babies around me that are normal, and I just feel so brokenhearted. I can't tell you any great revelations that I have because I fight these feelings every day. I will pray for you. Look up these passages...they have helped me....Sorry so long.
Deuteronomy 31:6,8 Psalm 34:18-19, Psalm 46:10, Psalm 56:3, Psalm 57:1, Psalm 61:2
Some of these I have printed out and put in various places as a reminder. I'm praying for you and your beautiful family!!
Oh Kristen,
I'm saying a prayer for you and Cayman now; praying for strength for you, comfort for Cayman and wisdom for the physicians. I'm praying for a smooth trip to Ann Arbor if that is what is needed to fix this problem. Find yourself some quiet time to pray and then TAKE A NAP!! It's easier said than done! (I know)
Jill
Oh, Kris, I can't even begin to understand how you feel...but know that I'm having a "God talk" on my drive home from work on behalf of you and your family. I hope you get some sleep soon!
I love you!
Ang
I must tell you that I am extremely encouraged by you and your life. I am an old friend of Samantha's and I occasionally check the sight to see how Cayman is doing. I understand health problems...I have been experiencing my own for the past three of four years. I have had five surgeries in less than nine months and actually also have a shunt and hydrocephalus. I must tell you, I do not know how you do it. I struggle much with keeping the right mindset and perspective. I get mad when people tell me how God does not give us more than we can handle. Often times I cry out to God, asking why. But the thing is...it is true [which is probably why I hate being told so], that God really does not give us more than we are able to endure. After being in the E.R. at least 3 or 4 times this week, I ask God why. But when I read what you all are going through I am encouraged because I know that God is allowing your situation to remind me just how great it is to have support system. Yeah, my family is not that great, but my friends - including Samanatha - are my familial support system. Do not think or believe th lie that you have to have it all together all the time. There are days when everything seems to be falling to pieces and we wonder why this must continue - but no matter what never lose sight that God is in control and that He is there right beside you every step of the way When we hurt, He hurts too, when we weep, He weeps. When we are joyful, He is joyful. No matter how uncertain times may be - I am talking to myself here too - never doubt that God has a master plan. He will bring you three through this. What an awesome testimony you all have, just think ---- years from now, you will remember these times and know that God is the One who got you through it all. Just no matter what, do not doubt that God has a plan, He will see you through this. I will continue to pray and try to check back more often. Stay strong.
Hey! I can't tell you how badly I wish everything would go like it is supposed to for you and Cayman. I wish it would all just balance out. I posted a poem on my blog that I want you to read though, it's uplifting!!! I'm praying for you!!! Give that pretty baby a little smooch for me!
"Heavenly Father, please bring peace to Mike & Kristen. Please allow them a moment's rest & the supernatural ability to find it in excess where they may never have seen it before. May each hour of their sleep rejuvinate them 10x it's weight in minutes. May you meet every financial, spiritual, mental, emotional, physical, social and any other possible need for this family in only a way that you can. Please envelop them in Your love & provision, protect them from the enemy & equip them to fight back when they need to. We love & trust you, Father. Thank you for seeing us, hearing us, crying & dying for us. And thank you for being right here beside us. AMEN!!" XOXOXOXOXOXO!!!!!!!
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