It has been a really bad day for me on the computer!!!!! I have been trying for about 4 days to compile an e-mail containing medical record info for Caroline's NY appt. The office has been a little difficult in requiring us to provide a spreadsheet only via e-mail typed from us. Although all medical records requested were sent in January. I had trouble locating the files I had been working on. I am pretty proficient at e-mail , online banking, shopping and selling on Amazon, but excel spreadsheets and finding lost files I am not very good at that. So after today - I am enrolling in a computer class because I have to be able to send and retrieve information without such frustration. The NY Dr. office would not accept us without this information and just contacted me Monday to say the original spread sheet was not accurately filled out!
Long story short, Cameron contacted my pediatric office who personally called NY and hand typed the info for us after using a home e-mail because they would not accept it from the dr office -it does not make sense. They had the info and wanted it typed in a new format.
So I am giving my pediatrics office kudos from Caroline - they have bent over backwards for us with appointments, special visits and several nurses and admin going the extra mile - I could just cry and am thankful in desperation that as I sat at my computer in tears someone who has never met me or Caroline down the street about 5 miles was working on my document!!!!
I am amazed at how God can work and touch me even in my anger, tears and frustration!!!!
Caroline is doing great otherwise!!!! She is 11.7lbs and had a nutritional evaluation today. her weight, length and head circumference are all proportionate to one another and she is now on the growth chart!!!
Yesterday we were at the pediatric office for our last RSV shot - yeah!!!! She seems to be getting stronger every month! we are contemplating adding more PT! She will probably only get speech therapy once a month for now - she is not that verbally behind yet since she is only 8 months old. We have started baby sign language. Carley and I have 100 words we are working on with flashcards. Caroline always has a sweet spirit in the middle of my storms and chaos. I am saddened to think she may not possible have a "normal" life. Then I think about how my "normal " life is and how I face challenges, struggles, and disappointments. She only has to be herself and does not know disappointment and challenges. She only continues to bloom and flourish despite her circumstances while I worry and hope. I need to glory in her weaknesses and know God will give strength and peace for each new step along the way as I need it.
6 comments:
Awww...now I feel bad that I recommended that you put all Caroline's records on Excel...I had no idea that was a frustrating thing for you!
But, I will tell you, that I've had to go through, look for files, and spend weeks...WEEKS...compiling files, examining records of appointments, and tests, and, well, you name it! I surely can identify with your extreme frustration!...AND, do not understand the NY office requiring that format from you, as opposed to accepting records from the doctors' offices...you're right...it doesn't make sense. In fact, I've never heard of it before! If I'd been you, I'd've probably spent the entire week in tears!, so, I think you are handling it GREAT!...uhhhonest! Praise God that He provided what you needed getting those files completed!
Caroline's weight and being actually on the growth chart at this age, Girl, is phenomenal! David has NEVER been anywhere CLOSE to the growth chart...but usually somewhere between 1-3%. So, that's totally awesome!
And, um, "normal"?? [cough] (smiles) "Normal" has a whole different baseline, from one person to the next...and what is normal for your Joy Child will be what she grows up knowing, and will be just fine for her life.
Each of our children have needs, and each of our children have special needs. Caroline's needs are simply going to be different from Carley's.
Just remember to stress with your other children two things:
First, fair does NOT mean equal. If fair meant equal, then, every one of us would have what Caroline and David have. And,
Second, 'needs' are not less 'important' simply because they are not 'urgent'.
I've had to teach my children that 'whatever they need to function successfully in the requirements of their day' is 'important', and has equal right to be addressed and met, even if the need isn't 'urgent'.
I say that because 'normal' becomes redefined whenever trauma occurs in one's life...just ask anybody who is a cancer survivor, or a family member after a funeral. Well, with our non-mosaic children, they see the weight of events in their 'special needs' sibling's life, and in their own minds, they begin to minimize the things in their own lives that are important, simply because those things are not traumatic or urgent, or 'special needs'. We have to remind them that 'important' is whatever they need to function during their day...even if it's only a pencil.
For them, that pencil is just as important as a respirator is for David. It isn't urgent like a respirator, but, it is important. Both items are needed to survive the day successfully; one just happens to be more traumatic than the other.
So, always remember that 'normal's baseline' varies from person to peron, and from event to event in our lives. Caroline's 'normal' will be comfortable for her. David doesn't no know life without being poked and prodded on, and seeing people in white coats, and blowing them kisses after they've finished working on him. Ohhh, how many nurses that boy hat batted his long eyelashes at!
And Carley's baseline for 'normal' will be different from most of her peers. She will probably grow up much more responsible than kids her age, deeper in her spirit, more compassionate of others and the needs of others, and able to live more simply. She will probably tend to become Carolines' second Mama, and consequently, will become a better leader in school and with her peers. I would say those are all good things, though.
Just remember to take time for you every day. Put down the Excel, and the records, and the spreadsheets, and quiet a room, and let the silence soothe your soul....for a little while...every day. Those minute vacations are not just luxury for Mosaic Moms. They are essential, and a lifeline for health. You're not running a sprint, but a marathon. Remember to pace yourself...that means 'daily vacations'. They're essential...and should be part of your 'normal' baseline. They're important, because you need them to function successfully from day to day...to day...to day...not urgent, but very important.
Well...another 'book'. I always start out intending to write just a little blurb or note of encouragement, and it turns into a book. I'm so sorry.
Well, Mama Kim, you take care. I am so glad to see another blog from you. Great job this week, Hon...you're doing wonderfully!
Hugs, from across the miles, Julie
I know we haven't had a chance to speak yet, but I check out your page every so often to see how things are going. . .
I'm so sorry you have had to deal with so much frustration and red tape. I can't even begin to imagine what it is like for you having to move right now.
It sounds like Caroline is doing incredibly well. On the charts is awesome!
A "normal" life? I like to think that our children will have extraordinary lives. Our daughter Avery has already inspired so many people and I know there are great things ahead for her in life. When I look at her I just seriously feel like I hit the jackpot. I wonder how lucky I am to be given the opportunity to raise someone so special. . . someone that is such a fighter and has surpassed all odds. For me my perception of normal changed the day we received our amnio results. I felt thankful she was only mosaic and I mourned for those moms who experienced having (and losing) a child with full triploidy.
Our kids just rock! I know our Avery has made my husband and I better people and I'm sure she will have a profound impact on our other (soon to be 4 year old) daughter.
When I start to get in a rut with all the doctor's visits and tests I just remember how healthy she really is. I remind myself that she has a mosaic condition. . . she carries so many completely healthy and normal cells that have made some completely and healthy parts. I know she will continue to surprise everyone. . . just like Caroline & David.
I wish you the best of luck with your move. I'm here if you have any questions about our daughter. She is 6 months old now and just so awesome. We knew about her condition from an amnio before 20 weeks and her birth was planned and organized so everyone was ready for her needs. She was 3 pounds 6 ounces at birth (born at 36wks 6days) and spent 4 weeks in the NICU. She loves to smile & laugh. . . and her favorite thing right now is blowing rasberries. She is extremely social and loves loves loves to "talk". You can't keep her quiet. She receives PT weekly and she loves her therapist.
Ariana
Kim, Ariana
You guys are the greatest...
I know our Mosaic babies rock....but, I think Mosaic Moms rock too! :)
Huggles, Gals! xox Julie
I think you guys should ALL apply to be on the Oprah show so the whole world can see how special these babies are!!!!!
I get to see little Caroline on Wed. as Kimberly takes her to NY. I'm staying with Carley.. we are going to have sooo much fun while her sister is gone. And I will be in bed at 9:30 every night after Carley wears me out all day!!!
I can't wait to see both of them.
Julie, you're re so good for the girls!!! I'm so happy. You've experienced a lot of these things they are going thru so it helps to have a person to sympathize with them but more than that to comfort them and encourage them. Both Mommies seem to be doing great though!!!
Everybody HAS got to get together somehow and meet at some point! How fun would that be!!!
I'm praying for all of you. Everybody don't forget Julie....... she's gone some of this but still has challenges too. And seems to be just a WONDERFUL Mom and friend!!! We're so thankful for you!!!
And you need to tell us about your days some days!!!Much Love to all of you Terri
Kim,
So, Julie apparently left you JUST the message you need. She doesn't know how even before Caroline, you often had a hard time taking things at a slower pace, or taking a few moments to RELAX...it is even harder now.
God keeps sending you more blessings, she seems to be one of them!
I am glad to hear your doctor's office cooperated and went the extra mile! YAY!
Kisses to my precious nieces :)
Love you,
Kelly
Kim
Thanks for all that you write about - your love for your girls is so plainfully obvious and is inspiring to me. Having Caroline is spreading love all around to people she doesn't even know!
Nice pics too!
Melissa
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