5.15.2012

Photo Dump

Mother's Day Bedtime
I just want to say thank you all again for the kind words of support and encouragement.  I feel so very blessed to have so many friends!  And for those of you who like to pray for specific needs, I would love to ask you to pray for Lucy's appetite.  She desperately wants to get rid of her feeding tube.  We ALL do.  So I am praying that God will give her a wonderful appetite in the coming days, weeks and months.  Its not likely that the tube will come out before the end of summer but we would love to see it come out before school starts in August.

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Every now and then I just need to do a photo dump.  Tonight seems to be as good a night as any.  Many of these are from my phone, so the quality is not so great.  However, all these pictures represent a sweet memory that I want to have forever.

Jack simply adores his big sister.  He calls her "Yah Yah."  

I credit all the tutoring she and Mrs. Cissy have been doing. 

Our family is enjoying the time we have with my grandfather.  My girls just love him so much.  This particular night they took turns snuggling with him in his recliner.  

Lucy the safari guide.

Hogan sent me this picture last Friday.  I had taken the girls to the zoo for a school field trip and apparently Hogan and Jack had played very hard all morning long!

Ella before school one day last week.  She is growing up right in front of my eyes.  I am so proud of her.  

I love this picture.  

I have a whole post I want to do of Jack and this face.  Those eyes.  Wow!  He loves to pick up my phone or camera and say "chee."  This is the exact same picture I get every time.  He has the pose down to an art.
Days are hard here at our house.  Nights are sometimes harder.  There are a lot of physical demands placed on all of us.  Lucy has not made as much progress as anyone had hoped or expected physically so we are facing some huge hurdles there.  Insurance will only cover 20 sessions a year and we are on #16.  I am so very grateful to have good insurance, so this is not a cry of ungratefulness.  It is, however, a scream of frustration.  I don't understand how someone in some corporate office can dictate that my child only needs 20 sessions of PT a year.  The sweet angel can hardly walk from one room to the other.  She sure can't climb stairs on her own, get fully dressed alone or even put her shoes on.  I don't get it!  A PT session without insurance will cost us $400 an hour.  Clearly, that's not an option.

We are going to try to work with a couple of friends over the summer in the pool a few times a week.  If this works out it will buy us time until school starts back up in the fall and we can utilize the public school's resources.  I am worried about Lucy's body's ability to handle the chill of the water.  She has a very hard time controlling her body temperature due to the extreme doses of chemo that she received.  I have read about children swimming in wet suits to help with temperature control.  If anyone has had any experience with this I would love to know.  Thanks!


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32 comments:

  1. Have you thought about checking out your local YMCA. Ours has a heated pool and you can get a summer pass or a yearly pass. They even offer scholarships if the price is too steep, I can't imagine that your family wouldn't be able to get a need based pass. I hope you have this in your area. Praying for you and your beautiful family.

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  2. Kate,
    I work for a health insurance company. You need to call and see if they will override the limits on her PT. With the correct documentation from the doctor along with medical records showing she is not progressing they should be able to overrride the limits of your policy. This is just a thought, hope it helps.

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  3. Hi Kate!
    I work at a summer camp where beginning temperatures in our lake are often right at freezing so we must use wet suits to set up the docks. I know it is most likely much different for Lucy since she is so little, but for us young adults the wet suits work really well so we can stay in the water without developing hypothermia. With her feeding tube that might make things a bit challenging because wet suits do cling so tightly to the skin, but I'm sure it is doable. Wet suits also come in many different types--some cover all the way over the body with options of covering the hands and feet and parts higher on the neck and head while others are more like a romper (short sleeves and shorts) or less where you can wear just a top or bottom. Like I said, I don't know how well they would work for Lucy, but they definitely maintain body temperature for me and my coworkers.
    -Jessica

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  4. Hi Kate,

    I wonder of you will remember me, I contacted you in March about sharing Lucy's story at an oncology nursing symposium. I have been praying for Lucy and your family since Lucy was diagnosed.

    I have a nephew who has a heart condition. He is currently 16 yo, 5'8 and weighs 101 pounds...he is skinny, skinny, skinny!.m we have a beach home on the Puget Sound and on a hot day the water temp is 52-54 degrees. Peter has been swimming with a wet suit since he was old enough to get in the water. There are many excellent brands that you should be able to purchase at a good sporting goods store. My nieces actually had them too, in PINK no less. Peter has been able to swim comfortably his whole life by using his wet suit. He can be in theater for a really LNG time too. He has awesome movement and flexibility.

    I hope this helps. I will pray every day for Lucy to gain weight, for your family, for your future!

    Against all hope, in hope I believe...Romans 4:18

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  5. Kate,
    In the cute pix of Eric and the kids, Lucy's face is beaming. What a smile! And her hair is getting longer! Who knows what wonderful change we will notice next...

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  6. I agree with the person who suggested the Y. I am an Aquatics Director in AK with the Y and I definitely consider medical issues when looking at helping a family out with membership or classes. Also a lot of times the water can really help mobility. I also second the idea of a wetsuit. Depending on how much mobility you are looking for you could go with a knee or full leg length. I have a couple of kids in my program who have mobility/warmth issues. One uses the O'niell toddler full length suit and the other uses a roxy girls full length suit. Both can be found at swimoutlet.com .

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  7. Have you checked into a Medical Waiver Card. It's different then Medicaid. It acts as a secondary insurance for kids with high medical needs and is only based on the child's income. This means the child can have no money in his/her name. This card is difficult to track down but I can give you some tips if you decide to go this route. The card will cover PT and there is no limit.

    Hope this helps.

    Ashli

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  8. Hi Kate. Looks like you have already had some great suggestions, but I wanted to add a vote for trying out a wet suit.

    My youngest is super skinny, and although a normal height she is off the bottom of the charts for weight. Even at our local indoor pool (heated) she can manage less than 5 minutes in the water before her lips are blue.

    We got her a wet suit so she could do swim lessons, and this thing has been amazing. She loves wearing it (it helps her buoyancy too) and can manage about 30 mins in the water with it on.

    One thing that might help with the feeding tube is a rash vest - basically a lycra type top which is snug fitting, and worn between the skin and wetsuit. This helps reduce rubbing and chafing issues.
    Good luck with it all. Sounds like you are continuing to do an amazing job to find a path forward for Lucy.

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  9. Hi Kate,

    I just wanted to share that I have 2 kiddos in therapies. My son Luke, is in occupational therapy and they approved 28 sessions initially. However, the therapist sent in progress notes and a treatment plan/update stating why he needed more therapy and they added additional sessions. Each time they get close to using up all the sessions, the therapist re-submits to the insurance for more approval. Not sure what insurance you have, but this is a common occurance. This has also happened with my daughter who is in speech therapy. I will be praying that the Lord provides the needed therapy for Lucy.

    God Bless,
    Carissa

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  10. Hi - just wanted to add in another vote for wetsuits. My son was born with a major heart condition (hypoplastic left heart syndrome) and prior to his most recent surgery, was EXTREMELY sensitive to the cold and would go blue in a flash. We bought him kids' wetsuits from the local supermarket - not expensive ones - they were only about £15, and available in all colours. We found the 'shortie' style ones worked well, with elbow-length sleeves and knee-length legs. They kept his core really warm and he could stay in the water as long as he wanted without getting blue and shivery. Although the suits fit well, he's quite skinny so they aren't totally skin-tight - hopefully you'd be able to fit in Lucy's feeding tube with no trouble. xxx

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  11. Hi kate. Just wanted to add my voice to the wetsuit conversation. My middle daughter is 100
    percent healthy but has always been extremely skinny and feels the cold. She would shiver and want to get out of even a heated pool. A wetsuit makes all the difference between being misera.ble and enjoying swimming. We have never needed to buy an expensive suit, a supermarket's own brand does the job and come in a selection of colours (we are in the UK but i'm sure you must be able to get cheaper ones there too). Praying that lucy gets the physio she needs and continues to make good progress. Your kiddos are adorable x x x

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  12. In Germany you get as many sessions as you need. 20 is nothing.
    Your Ella looks sooo beautiful in that outfit. Keep your head up!

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  13. I have nothing to offer but prayers on these topics, so prayers for you that everything works out.

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  14. Your public school should offer some summer pt sessions. We call it extended school year for kids that can't go that long with out their therapies.

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  15. Kate, I had a friend who lost a great deal of weight and lost his appetite due to an illness, and the doctors prescribed him Megace which is an appetite stimulant. It made an incredible difference and brought his weight back up to normal in a very short time (he also started eating everything in sight). :) I just checked and found an article that addresses its use in children with cancer, and it includes another drug called Periactin, I hope links work here: http://www.ncbi.nlm.nih.gov/pubmed/18989154

    I have been lurking since early autumn and I just want to say that I think you are incredibly strong and are doing a fantastic job raising your children and I think Erik is a totally rad husband and father. :)

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  16. Hi Kate, My daughter (18 months) takes ISR swim lessons and was unable to maintain an acceptable body temp by their standards in a pool that was 84 degrees for 10 minutes. Got her a wet suit (cheapest I could find was on Amazon) and worked like a charm. Give it a try. Prayers from Michigan. Lynette

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  17. OH KATE...HOW PRECIOUS THESE PICTURES SHOW YOUR SWEET FAMILY TO BE!!! REMINDS ME OF HOW THE WORD SAYS "MARY TREASURED ALL THESE THINGS IN HER HEART" REFERRING TO HER SON! CAN YOU IMAGINE IF THERE HAD BEEN CAMERAS BACK THEN!! HOW BLESSED WE ARE TO HAVE A WAY TO CAPTURE MOMENTS ....KEEP CLICKING AWAY!!! WE ALL HAVE GOTTEN TO WATCH ELLA GROW INTO A YOUNG GIRL/WOMAN IN THE PICS WE SEE!!! AND JACK...LIKE I KEEP SAYING "YUMMY", ABSOLUTELY "YUMMY"! AND THEN PRECIOUS LUCY.....SEEING HER HAIR GROW IN SHOWS HER BODY IS HEALING AND HER WHOLE APPEARANCE LOOKS HEALTHIER....PRAYING NOW FOR APPETITE TO SURGE!!!! AS FAR AS THERAPIES...DON'T GET ME STARTED....I WOULD THINK THE POOL AND A WET SUIT WOULD BE A WONDERFUL PLACE TO "WORK OUT"...NO EXPERIENCE W/WETSUIT BUT MAKES PERFECT SENSE. STAY ANCHORED DEEP AND KNOW SO MANY ARE LIFTING YOU UP!!!

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  18. Hi Kate....Again, we have walked this path with our daughter. Our insurance was just like yours...20 sessions and that was it. What we did and it might be of some help to you is get our therapist to write down exercises and a program of what she needed to do. We then found a gym with a personal trainer/gymnastics coach who was able to do the exercises with her. Some of the things are so simple and repetitive. Carley just needed someone to "oversee" that she was doing them. She loved going to the gym b/c he would actually let her get on the mats, trampoline ( with the ropes attached), etc and she felt kind of normal again although she was doing her "therapy" exercises. We would report back to the therapist for follow ups and to update the program. When she got far enough along, we even called the skating rink in Cordova and they allowed us to bring her when the rink was closed to "skate" to work on her balance and did not charge us a penny. We found so many people to be supportive and so willing to help to keep her improving. I felt like you and still do with the insurance companies...ahahhhhh...how can they put a time limit on something like this? Also, is there a fund set up for Lucy so I can make a donation to help you with these expenses? Your story through your blog has been such an inspiration to me. We have walked this exact path with our daughter and her fight against medulloblastoma. It is not an easy road. Your strength and faith simply amaze me. While St. Jude is a wonderful place, there are so many extra expenses outside St. Jude in getting Lucy back to a normal life. Lucy not only needs it all but deserves it all! Hope this helps and let me know how I can make a donation for this sweet child to keep improving!

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  19. Mary Baker GreenMay 16, 2012 at 8:12 AM

    Kate, a friend of ours has the same insurance restrictions with insurance and PT/OT sessions. The child has a head injury and desperately needs the therapy to keep her progress goingor at least, not regressing. The way this has been overcome?? Friends from church and from following Carinbridge have stepped up to the plate and have VOLUNTEERED their time. Please don't be afraid to ask- you'd be surprised how many people will love to help sweet Lucy!!

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  20. Suzanne_SchlotterbackMay 16, 2012 at 8:50 AM

    I was also going to recommend that you check out a cardiac rehab pool. This may be at your local hospital... typically they are kept much warmer... in the 88-90 degree temp.

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  21. Hey I also work in the insurance realm and even as an employee I know how frustrating it can be. These limits CAN be overrided. Have her doctor and therapist write thourough progress reports on the need for additional visits due to safety etc... and I can almost guarantee she will get more visits. I hope this helps! My family and I pray for Lucy and your family daily!!! You are leading me on my spiritual journey everyday, you are an amazing Christian woman and mother and something to be admired. Thank you for sharing your journey with all of us!!!

    Serene

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  22. Is Lucy on a 504 through the public school? This is a federal program, something you can ask your school counselor about. She might be able to get PT services during the school year if on a 504. Also, ask your current PT for a summer home program. She can give you a lot to work on over the summer too.

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  23. Kate, My daughter Eden had to wear a wetsuit from birth till she was 4 because of her heart condition. We bought the brand TYR. They are a light neoprene in the body, with simple spandex sleeve. We always wore a rash guard shirt and swim bottom under them. These are made for swimming, not surfing or water skiing. The neoprene is a bit less thick so you can move well, but stay warm.

    An idea for PT - local university that has a program? Maybe get a PT student to work with her over the summer?

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  24. Hi, Kate!! I can't believe how great Lucy looks!! Wow! There is also a dry suit that people use for water sports in the winter. It keeps you dry (except hands and feet). I wore one once to go skiing in January, and I think it worked really well (of course, I was 17!!!). Hope that helps! I continue to pray for your Lucy!

    Jennifer Garner

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  25. Hi Kate, my name is Lindsey and I've kept up with your blog over the past six months via a friend of mine. I'm currently completing my last 12 weeks of clinicals before I finish graduate school for physical therapy. I wanted to offer a possible idea about your difficulty with the insurance cap of PT. An option might be to contact a physical therapy graduate school in your area to see if any students would be available in the summer. Our school often gets inquiries about students volunteering. I know you would want an experienced therapist working with your daughter but it may be an option to have a student come assist your current therapist so they know the goals you are working on and any precautions they would need to be aware of. I don't know the area you live in but if you need any helping locating a school I would be happy to assist in any way I can. You can e-mail me at Ludford(dot)Lindsey(at)gmail(dot)com

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  26. Insurance can be so frustrating! FYI, if you are getting therapy in a hospital it will be much, much more expensive than if you go through an independent clinic. If you are unable to extend the number of sessions Lucy gets, you might consider switching to a therapy group. I'm sorry I don't know of any in your area, but I work for one in my area and an hour of therapy costs less than a quarter of what a hospital charges. Good luck!

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  27. Oh, it looks like my first comment didn't get posted. If you haven't been told about it already, you might ask your doctors about Megace, and appetite stimulant. A friend of mine had an illness in which he lost his appetite and tons of weight, and nothing helped until he was put on Megace, his appetite returned big time and he gained all the weight back. I found an article that talks about it and another drug called Periactin being used for children with cancer that you can read here: http://www.ncbi.nlm.nih.gov/pubmed/18989154

    I've been reading your blog since last August and am here every night quietly cheering you all on. Whether you think so or not, you and Erik are doing a fantastic job with your family, and I hope that Lucy's appetite turns around soon and that she continues on her difficult road to health. Best wishes to you all.

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  28. Check for therapeutic pools. We have a place called CP Rochester here that has Water Therapy in a heated pool. My son takes therapy there once a week. Also, check with your school district for summer services! We get extended services for him, 6 weeks in the summer! We will take it! Good luck! Lots of prayers for you all!

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  29. Everyone has had great suggestions including ones that I wouldn't have even thought of.

    In California, the school district usually takes over in cases of kids on IEP's and such. Could that be a possibility? I know someone mentioned something like this but I wanted to reiterate it.

    Definitely look into overrides for your insurance. Doctors are used to fighting for this stuff and will usually be happy to help.

    Failing all that, see if she qualifies for Easter Seals. They were seriously a blessing for my son.

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  30. Kate,
    I have been following Lucy's story for quite a while now. My son is a cancer survivor, so I have great empathy for what you are going through. My children used wet suits in our pool and in the lake for the last month or so. They thought they offered a lot of warmth. We have only personally purchased one at a local sporting goods store. I think it was only about $40 or $50 - much less than the hourly pt price since it is a one time fee, especially if keeps Lucy warm. We have the ones that are short sleeved and not full length in the legs, but you could also try the long-sleeved, long pants type. Best wishes!

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  31. Emily_rutschillingMay 23, 2012 at 1:15 PM

    I would definitely suggest getting a wetsuit for Lucy, though Ella may end up wanting one, too! Here's one similar to what I wear: http://www.swimoutlet.com/ProductDetails.asp?ProductCode=25061&Click=310393 I'm a swimming instructor, and, when I graduated from high school was 5'6'' and 105lbs...I would FREEZE. I tolerate cold water a lot better with the wet suit {and the 30 lbs I gained!}.

    Also, check into therapy pools. A lot of YMCAs have them {Especially big ones in cities} and you may also be able to find adapted aquatics for Lucy. This would possibly include special needs, one-on-one instruction. Otherwise, be certain to tell potential instructors of her limitations.


    Email me if you have any questions about YMCA programs/instructor, etc... I guess I'm Red Cross trained, too!

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  32. My daughter was born 3 months early last october in Little Rock and as a preemie she still has trouble regulating her body temps. She also has a congenital heart defect so our doctor suggested that we buy a wetsuit. We have a pool of our own so this was a MUST. The doctor said to make sure the material was made out of neoprene and not a cheap version of it. We found ours on Amazon.com here's the link to the one we have http://www.amazon.com/ONeill-Reactor-Toddler-PunkPink-Graphite/dp/B00290M9SK/ref=sr_1_7?ie=UTF8&qid=1338139293&sr=8-7
    We also have to get out of the water every 20 minutes to just check her body temp to make sure it doesn't fall below 97.8. When they get in the water make sure to fill it up with water while she is wearing it and that water will warm up while she is wearing it and kind of insulate her. We have a prayer page on Facebook for our little girl if you ever want to stop by and ask any advice because we have the same problems with insurance as well. We were granted something called TEFRA that has a monthly payment based on your income and supplemented what insurance you carry. I follow Lucy's fight on a daily basis and pray for her nightly! GO LUCY!!! :) Facebook page is Praying for Brielle Ramos.

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