Well I am feeling all of the past nine weeks today.
Me - I am sleep deprived, but pain free at this point. I still have an extra section or pocket of fluid or maybe even fat on my hip that I am going to my family care physician for a physical and another blood test to check my liver enzymes. They were a little elevated at my last OB check. He does not think this is serious and wants me to get on an exercise program and possible physical therapy. I sorta took this with a grain of salt because I have not exactly been sitting on my tail the past 7 weeks. I am feeling better, but pray I will get answers on my hip situation.
Caroline - We had two appt today. We went to peds today for weight a weight check and four shots. It was a bit emotional for me. She cried and lost her breath while the shots were given. She has not eaten well this past week, but I was hopeful. I was also shocked to see her weight was only 6.2 today after 1 full week. I am discouraged to say the least, but need to remember this is part of who Caroline is and her underlying genetic condition that we still are awaiting a firm diagnosis. I am trying to get to the geneticist before NOV 7 - but I seem to be getting the cold shoulder about all my ideas and urgency for Caroline to be seen.
We went to have a renal ultrasound today of her kidneys - it still needs an official reading, but the tech said they appeared normal - yeah!
Caroline cooed and smiled at the pediatrician today. She was thrilled and told me she has a good brain and seems quite social. This was the only thing that warmed my heart today. I have to now wake her every three hours in the night and keep to the two hours in the day time. It is completely exhausting honestly. Than to have little weight gain - I am beginning to think what is the point - let me rest. Then Dr. Downing said if she doe snot take 16-18 0z daily we will discuss a feeding tube in three weeks - so I am just bummed today! What the Dr do not know is that I am feeding , waking and preparing bottles and this child is doing good to eat 16 0z a day!
18 is not in the works! He has only had 17 oz twice in the past two weeks and last week she ate only 14-15 oz per day so.....................
Pray for my strength and Caroline's eating and growth. We will also need a suck/swallow study done by a speech therapist . I am not sure what this determines. I already know the suck reflex is weak due to low tone issues. We have a PT eval on Mon. and pulminologist recheck on Thursday. Oct 29 is neurology and I will schedule endocrinology in mid to late Nov. after I speak to Dr. Spence. I really hope we get a diagnosis because lots of things can not go forward with insurance coverage and therapy without a diagnosis.
5 comments:
Hello Kim and Cam.
I know ya'll must be exhausted, but try to focus on the positive info you are getting about the baby. Your fatigue is for a wonderful result in Caroline. You have come so far and are doing a great job. I would love to see Caroline coo and smile - that in itself is so much to be thankful for. She always seems very alert in her photos, like she is interested in everything going on. The renal results sound very encouraging. And as one who has been through various physical therapies, PT can work wonders and improve so many problems. Since I am not walking in your shoes, I can only imagine what you are experiencing. But for every step you take, remember that there are many, many people sending up good thoughts and prayers to help you through this. You will never be alone in Caroline's journey. Kim, I hope your hip gets better soon. When you can start feeling better, everything will seem a little brighter. Hugs to you all.
Peggy Cerny
Kimberly,
OK, I know it is easy for me to say, but try to take a deep breath, or as many as you need...and realize you are doing all you can...give the rest up in prayer and to those who love you. I wish I could come spend a few days a week there to help...too bad I have a job!!! :) I really wished I could have come with Mom, but with me being sick it was a no, no for sure!!!
Hope to see you soon!
Love you,
Kelly
"Disappointment -- His Appointment"
Change one letter, then I see
That the thwarting of my purpose
Is God's better choice for me.
His appointment must be blessing,
Tho' it may come in disguise,
For the end from the beginning
Open to His wisdom lies.
"Disappointment -- His Appointment"
Whose? The Lord, who loves me best,
Understands and knows me fully,
Who my faith and love would test;
For, like loving earthly parent,
He rejoices when He knows
That His child accepts, unquestioned,
All that from His wisdom flows.
"Disappointment -- His Appointment"
"No good thing will He withhold,"
From denials oft we gather
Treasures of His love untold,
Well He knows each broken purpose
Leads to fuller, deeper trust,
And the end of all His dealings
Proves our God is wise and just.
"Disappointment -- His Appointment"
Lord, I take it, then, as such.
Like the clay in hands of potter,
Yielding wholly to Thy touch.
All my life's plan in Thy moulding,
Not one single choice be mine;
Let me answer, unrepining --
"Father, not my will, but Thine."
Edith Lillian Young
Kim & Cameron:
I continue to pray for you all each and every day. The above poem has helped me over the past six years. When I was a college student [in the dark ages], Phil Keaggy took these words and recorded a song so I always hear his voice singing it in my head! :)
I'm praying that every time you believe you have come to the end of all your strength and stamina, there'll be more of Jesus to see you through. At every 'bend in the road' you'll meet the Savior and realize He's your constant companion. He WILL carry you through. But I'm also praying for there to be plenty of earthly arms and legs sent by Him to help! I'm praying for miraculous weight gain - for Caroline! :) For your hip . . . . for your hearts!
Love you dearly,
Cathy
P.S. ~ I hope none of the above reads 'preachy'; only 'encouraging'
Psalm 94:18-19 “When I said ‘My foot is slipping,’ your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul.”
I read this on a friend's caringbridge page earlier, and it seems appropriate to share with you. Anxiety seems like a normal response to your situation... exhaustion inescapable. I am praying this evening that His consolation will bring joy to your soul.
Loving you,
Jenn
Kim
You sound so tired but I also read how lucky Caroline (and Carley of coure) is to have you. Talk about 100% effort 24 hours a day! You are so strong and determined which is not easy. The way your love comes through your writing is a real gift. You know that Caroline is growing and cooing and smiling - all wonderful. Don't let the docs bog you down - they are not even measuring the love, caring, nurturing and kisses that you are providing. That is off the charts!
Melissa
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