tag:blogger.com,1999:blog-5845195637603537263.post9179861949543177017..comments2024-03-15T13:00:08.144-05:00Comments on 2 Kids, a Mini Van and a Mortgage: Photo DumpKatehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-5845195637603537263.post-38639091443134141652012-05-27T12:34:20.755-05:002012-05-27T12:34:20.755-05:00My daughter was born 3 months early last october i...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<br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-39345294830570170882012-05-23T13:15:08.130-05:002012-05-23T13:15:08.130-05:00I would definitely suggest getting a wetsuit for L...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!}.<br /><br />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. <br /><br /><br />Email me if you have any questions about YMCA programs/instructor, etc... I guess I'm Red Cross trained, too!Emily_rutschillingnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-71858232493939290002012-05-21T20:01:24.749-05:002012-05-21T20:01:24.749-05:00Kate,
I have been following Lucy's story for q...Kate,<br />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!Emilynoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-43281117215845441572012-05-20T00:08:16.217-05:002012-05-20T00:08:16.217-05:00Everyone has had great suggestions including ones ...Everyone has had great suggestions including ones that I wouldn't have even thought of.<br /><br />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.<br /><br />Definitely look into overrides for your insurance. Doctors are used to fighting for this stuff and will usually be happy to help.<br /><br />Failing all that, see if she qualifies for Easter Seals. They were seriously a blessing for my son.jenhttp://grace-filled.net/noreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-7888220936791764882012-05-17T22:20:59.691-05:002012-05-17T22:20:59.691-05:00Check for therapeutic pools. We have a place call...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!Wendynoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-15772444085473314802012-05-17T08:07:43.533-05:002012-05-17T08:07:43.533-05:00Oh, it looks like my first comment didn't get ...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<br /><br />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.MayPullSearUpnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-9452394264197746272012-05-16T20:44:00.588-05:002012-05-16T20:44:00.588-05:00Insurance can be so frustrating! FYI, if you are g...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!Jlmamanoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-39727556443159191072012-05-16T20:41:43.563-05:002012-05-16T20:41:43.563-05:00Hi Kate, my name is Lindsey and I've kept up w...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)comLudford Lindseynoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-49437040720814190232012-05-16T17:36:10.615-05:002012-05-16T17:36:10.615-05:00Hi, Kate!! I can't believe how great Lucy loo...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!<br /><br />Jennifer GarnerJennifer Garnernoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-55312052057884439782012-05-16T15:42:36.273-05:002012-05-16T15:42:36.273-05:00Kate, My daughter Eden had to wear a wetsuit from ...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. <br /><br />An idea for PT - local university that has a program? Maybe get a PT student to work with her over the summer?Melissanoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-2237499327331728232012-05-16T12:29:43.336-05:002012-05-16T12:29:43.336-05:00Is Lucy on a 504 through the public school? This ...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.Melissa_slp1noreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-6515794345567161912012-05-16T10:31:52.142-05:002012-05-16T10:31:52.142-05:00Hey I also work in the insurance realm and even as...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!!!<br /><br />SereneSerenestevensnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-29755560291842857952012-05-16T08:50:52.283-05:002012-05-16T08:50:52.283-05:00I was also going to recommend that you check out a...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.Suzanne_Schlotterbacknoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-83834402307501341062012-05-16T08:12:26.107-05:002012-05-16T08:12:26.107-05:00Kate, a friend of ours has the same insurance rest...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!!Mary Baker Greennoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-50329469892708493322012-05-16T08:07:15.318-05:002012-05-16T08:07:15.318-05:00Hi Kate....Again, we have walked this path with ou...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!Carolynnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-56008030395085090982012-05-16T07:55:50.677-05:002012-05-16T07:55:50.677-05:00OH KATE...HOW PRECIOUS THESE PICTURES SHOW YOUR SW...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!!!Brgobblenoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-12788414686966169642012-05-16T07:22:15.546-05:002012-05-16T07:22:15.546-05:00Hi Kate, My daughter (18 months) takes ISR swim l...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. LynetteLynettenoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-40767477063308936002012-05-16T06:43:26.563-05:002012-05-16T06:43:26.563-05:00Kate, I had a friend who lost a great deal of weig...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<br /><br />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. :)MayPullSearUpnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-40096195287778288262012-05-16T06:22:14.384-05:002012-05-16T06:22:14.384-05:00Your public school should offer some summer pt ses...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.Angiecbishopnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-80103641855632226982012-05-16T06:10:53.707-05:002012-05-16T06:10:53.707-05:00I have nothing to offer but prayers on these topic...I have nothing to offer but prayers on these topics, so prayers for you that everything works out.Moirasavelnoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-73728597328258053302012-05-16T03:20:34.884-05:002012-05-16T03:20:34.884-05:00In Germany you get as many sessions as you need. 2...In Germany you get as many sessions as you need. 20 is nothing. <br />Your Ella looks sooo beautiful in that outfit. Keep your head up!Annepfeiffer588noreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-12212741120708153202012-05-16T03:00:49.309-05:002012-05-16T03:00:49.309-05:00Hi kate. Just wanted to add my voice to the wetsui...Hi kate. Just wanted to add my voice to the wetsuit conversation. My middle daughter is 100<br />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 xjohttps://www.blogger.com/profile/16534604922090932745noreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-17135907792617917072012-05-16T02:05:07.558-05:002012-05-16T02:05:07.558-05:00Hi - just wanted to add in another vote for wetsui...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. xxxPete, Ali, Charlie and Rosiehttps://www.blogger.com/profile/11106369302348116832noreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-83393898653299986242012-05-16T01:05:07.701-05:002012-05-16T01:05:07.701-05:00Hi Kate,
I just wanted to share that I have 2 kid...Hi Kate,<br /><br />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.<br /><br />God Bless, <br />CarissaCarissanoreply@blogger.comtag:blogger.com,1999:blog-5845195637603537263.post-13659448743121929492012-05-16T01:02:24.154-05:002012-05-16T01:02:24.154-05:00Hi Kate. Looks like you have already had some grea...Hi Kate. Looks like you have already had some great suggestions, but I wanted to add a vote for trying out a wet suit.<br /><br />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.<br /><br />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.<br /><br />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.<br />Good luck with it all. Sounds like you are continuing to do an amazing job to find a path forward for Lucy.Fionanoreply@blogger.com