Intestines grown from stem cells


March 17th, 2010

Yesterday I was having bit of a ho-hum day until I checked Max’s blog and read the latest entry which linked to this article

http://mdn.mainichi.jp/mdnnews/news/20100311p2a00m0na012000c.html

Talk about about turning my mood around! Even though the research is just in the very beginning stages and nothing has been published in a scientific journal yet, this is HUGE news for the short bowel world. Thank you Yuko for posting such amazing news to bring us to a whole new realm of medical possibility and hope!

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As Promised…


February 28th, 2010

Fun times had in February :)

A Valentine’s Day visit with Mamma Tom.
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What a great way to spend Love Day…..

Nora put herself on seagull patrol at Lake Ella. Get out of here gulls, this is duck territory!
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click here to see Nora “scramming” off the seagulls
Our little southern accent girl, who knew that “scram” could be a two syllable word? (and yes fellow germaphobes,  I Purelled her hands immediately after turning off the camera) :)

Took NeeNee’s doggie Lizzie for a stroll…
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Nora got such a kick out of pushing Lizzie in her stroller. She would have pushed Lizzie around all day, and I think Lizzie would have let her.

Had a dance with her shadow and a big laugh with Uncle Kia at Lichgate.
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Then the same afternoon Pappy and Daddy fixed Nora’s slide, made for one happy day!

We ended the month by getting Nora’s garden going. She is quite the little helper. Springtime, we are ready!
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Nora is such a happy and imaginative little girl. She is always making Montana and I laugh, taking us by surprise with the stuff she comes up with. The other night she was quietly playing in her room, Montana went to check on her and found her hammering on herself all over her body with her toy hammer. She wasn’t hurting herself so Montana just watched to see what the outcome was going to be. After a few minutes of hammering and rubbing the toy screw driver on her face she said “There, I’m all fixed!” I’m sorry I missed seeing that one for myself.

A couple more fun February moments, click the links to watch.

http://www.youtube.com/watch?v=yTbzhkYVsZI

This last one is really short but I just had to share Nora’s “goatee”.

http://www.youtube.com/watch?v=JHHuX9a2-oQ

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MMR Vaccine


February 26th, 2010

Where did this month go? Even though February is a short month it still seems to have gone by exceptionally fast. I joke about our house being a time warp but time really does seem to disappear around here. I feel like there are so many Nora tidbits I want to share but I rarely get uninterrupted time on the computer to make a post or when I do, my mind is in a sleep deprived fog as it is now. So I’ll stop wasting time rambling on and spurt out what’s foremost in my mind before Nora awakes from her nap.

Nora got her first dose of the MMR vaccine (measles, mumps, rubella) at the end of January. Most children get this first dose between 12-15 months but we have always been very conservative when vaccinating Nora and since she doesn’t go to daycare we waited till her system was good and strong before dosing her with a live vaccine. Well initially she seemed to have no side effects from the vaccine, but then about a week and a half after getting the shot (same time frame that the CDC handout you get from the doctors says to watch out for uncommon side effects) Nora began having very frequent stools and some of the worst stomach cramps I have ever seen Nora have. Which is saying a lot because my poor baby girl has had very intense stomach pains off and on her entire life. At first we thought she was just going through a phase she does every so often where she will have more tummy aches than usual, with no other way to really explain it besides it’s just one of the unfun issues that come with short bowel syndrome. But after a few days of stomach pains that would wake Nora from a dead sleep, one night she woke up at 3am screaming and never went back to sleep all night long, it was apparent this was something different. Around this same time frame, Nora developed a faint rash all over her body as well as a big red blotch in the exact spot of the injection site of the vaccine, which had never been red before. Then the light went on that this all must be related to the vaccine. After relaying what had been going on to her local doctor he tells us that he had recently read about research on the MMR vaccine causing intestinal inflammation and the measle virus colonizing in the small intestine.
(insert dumbfounded face here)
Are you serious? I was pissed, worried, frustrated. How could we not have been told about this before we gave the vaccine to Nora? I double check the rare side effects, not listed, I talk to other short bowel parents, they’ve never heard of it either and thankfully their child never experienced this side effect. I ask her GI doctors if they are familiar with this, they hadn’t even heard of it but had seen similar intestinal side effects happen with other vaccines.

I start Googleing and find articles on this “debate” as far back at the late 90’s. From what I concluded this side effect is seen as a debate much like some vaccinations causing Autism is a debate. To me it is very clear cut that this is what happened with Nora and thankfully it didn’t last longer than a week. But a week straight is long enough for her to have up to 10 stools a day, most which were so painful Nora would sometimes even hit her stomach, shake her fist, or cock her mouth and head in an almost seizure looking way. All of which are very out of character actions for Nora. Some of her stools would come out with such force that I felt the vibrations in my feet while standing next to her. It was awful, period. I was furious that research has been going on for over 10 years and there are no warnings, no information easily obtainable out there about it. Parents need to know all possible side effects, especially when it comes to something like intestinal inflammation with a short bowel child.

Had we known about this before giving her the vaccine my initial reaction would be to not give it to her. But it’s still a catch 20-2, not vaccinating can be just as risky but at least we wouldn’t have been blindsided with it all and could have made a more informed decision. From now on I will be researching any vaccine we are considering giving Nora very thoroughly.

At the moment I don’t know of any other way to get the word out about this besides Nora’s blog and the short bowel group I’m a member of. But I plan on trying to find another outlet to spread the word because I think this is very important information that all parent’s should be aware of, short bowel or not, uncommon side effect or not.

Well my sweet angel is up and my blogging time has come to an end for now but I promise to post again soon and the next post will be full of fun, happy Nora stories and pictures instead of scary vaccine stuff. :)

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Update comming soon


February 19th, 2010

Sorry for the lack of Nora updates, things have been a little hectic the last few weeks. I promise I’ll be making a Nora update soon but for now here are some pictures of our sweet, happy girl.

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Huber Needle Recall


January 30th, 2010

There has been a recall issued on certain lot numbers of Exel/Exelint Huber needles. Thankfully this is not the kind that Nora uses but I wanted to pass along the information because it is very important that anyone who has a port or who’s child has a port make sure that they are not using any of these needles. The recalled needles can puncture the silicone membrane of the port which can lead to serious health risks and could damage the port to where it would have to be surgically replaced.

Click this link to read the full article on the FDA website:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm198676.htm

or you can read the article below:

FDA NEWS RELEASE

For Immediate Release: Jan. 26, 2010
Media Inquiries: Peper Long, 301-796-4671, mailto:mary.long@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA Announces Class I Recall of Certain Infusion Set Needles
Huber needles used in implanted ports to withdraw blood, inject medications, and other solutions

The U.S. Food and Drug Administration today announced a Class I recall of Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets and Exel/Exelint “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation for Exelint International Corporation.
Huber needles are used to access ports implanted under the skin of chronically ill patients for repeated access to veins for the withdrawal of blood and infusion of medication, nutritional solutions, blood products, and imaging solutions. These needles should be designed to penetrate the port without cutting and dislodging any silicone cores (or slivers) from the ports into which they are inserted.

Inspections conducted in October 2009 of Nipro facilities in Japan found that their needles “cored” in 60 to 72 percent of tests. The reason for this coring is related to design and manufacturing processes, which the FDA continues to investigate.

There are more than 2 million units impacted by this recall in distribution nationwide. Recalled needles were manufactured from January 2007 to August 2009. Units subject to recall have a lot number that begins with “07,” “08,” “09,” and one of the following product codes or catalog numbers:
Exel/Exelint Huber Needles Product Codes/Catalog Numbers
26901
26902
26904
26906
26907
26908
26909
26911
26921
26922
26923
26924
26925
Exel/Exelint Huber Infusion Sets Product Codes/Catalog Numbers
With/Injection Site:
27940R
27941R
27944R
27945R
27946R
27948R
27949R
27950R

Without/Injection Site Product Codes/Catalog Numbers:
27954R
27955R
27958R
27959R

Exel/Exelint “SecureTouch +” Safety Huber Sets Product Codes/Catalog Numbers:
37854S
37855S
37858S
Hospitals, clinics and patients who have needles from these lists should immediately stop using these affected products and return any unused products to Exelint International Corporation. Direct all questions concerning this recall to:

Attn: Armand Hamid
EXEL International
5408 West Centinela Ave
Los Angeles, Calif. 90045-1504
Tel. 800-940-3935
Fax 800-308-5048
E-mail: info@exelint.com
Following hospital reports to the FDA of leakage after accessing the port with a Huber needle (labeled to be non-coring), the agency conducted it own laboratory testing of Huber needles from multiple manufacturers. This testing showed that certain Huber needles produced cores when inserted into ports. However, at this time only needles manufactured by Nipro have shown a high frequency for coring. The agency is continuing its investigation and will update the public if there are new developments.

At this time, the FDA has not received any adverse event reports related to silicone foreign bodies released in patients from Huber needle coring.The agency received only reports of port leakage. However, because it may be very difficult for clinicians to associate adverse patient outcomes with the use of defective Huber needles, there may be under-reporting of events.

The agency has issued a letter to manufacturers of other Huber needles to address design and manufacturing concerns.

“The agency’s laboratory work helped determine the coring problem, and we will continue to work with manufacturers to address coring issues as quickly and thoroughly as possible,” said Jeffrey Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health.

The FDA continues to work closely with all 20 manufacturers of Huber needles to understand the potential causes for coring and identify corrective measures. While a more thorough investigation of this situation continues, the FDA recommends that health care professionals consider taking the following precautions, which will be posted on the FDA’s Web site, when accessing implanted ports with Huber needles:

  • Avoid flushing the syringe when initially confirming needles patency upon accessing the port. If the needle has cored the port, flushing may introduce the core into the patient’s body, and could lead to serious adverse events.
  • When possible, upon accessing the port, consider aspirating a small amount of blood from the port after septum puncture, then discard the syringe with its contents. This step may recapture the silicone sliver. If the needle becomes clogged when attempting to aspirate, remove the needle, discard it and select a new one.
  •  Watch for signs and/or symptoms that may indicate damage to the port’s septum, such as medication leakage resulting in inadequate therapy delivery, along with tissue, nerve and/or muscle damage; and redness of the surrounding area.
  • Patients should continue to follow their doctor’s recommendations for receiving treatment.

Health care professionals and consumers may report serious adverse events (side effects) or product quality problems with the use of these products to the FDA’s MedWatch Adverse Event Reporting program either online, by regular mail, fax or phone.

FDA Information on Nipro Huber Needle Recall:

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87820
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87821
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87830

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The Year of Nora!


January 24th, 2010

It’s hard to believe that the first month of the new year is already almost gone. Our little family has been busy with typical life stuff and Nora is chugging along and doing great.

We wrapped up 2009 with a trip to the Sopchoppy River to visit my dear friend Ida who was in town for the holidays. Her parents live right on the river so we got a chance to take Nora out in a canoe for the very first time. It was just a short stroll in the water to see what she thought about it all and she did great and loved every minute of it. Before Nora was born canoeing was a regular hobby of ours which we haven’t done since my early pregnancy. You can see by the smiles on my face that this experience made me one happy mamma. :)

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Watch out 2010, this is only the beginning….I see many canoe trips and more fun adventures than ever before in our near future. I am proclaiming 2010 as the Year of Nora! Not to sound braggadocios but I am saying it with pure optimism and hope, although I’m never shy to brag about my girl. :)

Each year since Nora has been born has come with many challenges and hardships but they have also come with overwhelming happiness and amazement at the many huge successes our Nora girl has made. Medically and socially I just can’t help but believe that this will be Nora’s biggest year yet. We have high hopes of finally getting Nora off of TPN for good this year. She has really beefed up her oral intake and is only on 3 nights of 335ml TPN which is a very low dose. We’ve been talking with her GI doctor and nutritionist and plan to start decreasing her TPN even more soon. The plan will be to take her off Omgaven first to see if she can handle not getting fats intravenously and go from there. But even if this isn’t the year for her to be able to get off TPN completely we know she’ll continue to make leaps and bounds.

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Nora snuggeling up to our good ol’ cat Maxwell.

Nora had a nice visit with her Uncle Kia (Montana’s brother) this weekend.
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With her fishing hat from Uncle Kia and her boots Nora is all ready for a fishing trip!

On the social front, we are planning to finally get Nora up to visit my family in Kentucky this spring. This is something we’ve been long awaiting and very much looking forward too. Some time on my dad’s farm and visiting with family is just what we need. We will still be cautious with Nora when it comes to germ exposure but we are really planning to open up her social horizon more than ever this summer and hope to have many play dates with friends and family.

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See ya 2009!


December 31st, 2009

Oh what a year it’s been……as I sit here on the last morning of the year thinking back on the last 12 months and watching Nora play with all of her Christmas toys it makes my heart smile to just observe the pure miracle of her.

Then she asks me to close her up in her new castle tent, I peek in the window to see what she’s up to and she sweetly says “I want you to go bye-bye now mommy” and then my ushy gushy heartfeltness turns into laughing out loud and amazement in what independence my little Nora already has. That independence became very apparent on Christmas morning when we heard “I want to do it myself” many times every time we would try to show her how to work one of her new toys….oh what a stinker. :)

Christmas Eve delivered a very special present for all of us, Santa Crooms, I mean Dr. Crooms came by to visit Nora and bring her a present between surgeries…..amazing…. is the only word that comes to mind. We are so very blessed to have him in our lives. Who would have ever thought 32 months ago on the day that Nora was born such a special bond would have been formed between Dr. Crooms and our family.

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To say that Nora loved her puppy from Dr. Crooms would be an understatement.

We know that Nora is a very special girl as well as a very special medical case. But we also know that Dr. Crooms has preformed many life saving surgeries and has probably saved the life of a newborn before. But we’ve always wondered why Nora made such a strong impression on Dr. Crooms for him to take such a personal interest but of course not wanting to be too blunt to ask him to explain. Well I think we got our answer when I called to wish him a Merry Christmas on Christmas day and thank him for taking the time to visit Nora. I was telling him how much we appreciated him being in Nora’s life outside of the medical world and he said “I will be a part of Nora’s life as long as I am around. She is such a special miracle and reminds us all of how life should be.”

Thank you Dr. Crooms, thank you with all of our heart and soul for saving Nora’s life and being such a wonderful, caring person.

Christmas morning

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So many presents for one little girl, a brunch break was required to keep up the Christmas marathon…..

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Sooo happy :)

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An afternoon tea party in her new PJ’s

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More Christmas celebrating into the evening and Nora helped with the cooking.
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christmas-2009-036.JPG We hope everyone had a very Merry Christmas and wishing you a very happy New Year!

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