Archive for the 'Nora Medical Updates' Category

Still Celebrating


May 12th, 2009

Nora turned two years old two weeks ago and we are still celebrating. Although, I don’t think we’ll ever stop celebrating Nora, no matter how old she gets. :)

Nora turning two was a huge milestone. Getting her two years down the road from where she started with a strong and healthy constitution has been our main focus. The first two years of life are so important in so many ways. Now we can set our sights on her future with high hopes. We will still keep her as safe and protected as we can but we now feel that we can loosen the reins a little, broaden Nora’s horizons and share her with more of the world.

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Nora planting her first flower seeds, which she thought was a blast.

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Nora showing off her green thumb success a week later, she is very proud as you can see.

Nora is growing up so fast, physically and mentally. She is now up to 23lbs 6oz and she is just a hair shy of 33 inches tall. She is still gaining weight but at a slower pace for the past few months. Her growing energy must be focusing on height because she has grown a full inch in the past few months.

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As much as we want her to grow up big and strong, I as her mom can’t help but wish I could push pause just for a moment. The developmental stage she is in at the moment is so sweet, amazing and challenging all at once. Her language and communication skills seem to continue to advance at warp speed. She can pretty much say anything and she certainly understands everything that is said around her. Even when we try to talk in code around her she always seems to know what’s up.

Some of the newest things Nora has been saying….

When Montana tells her to “be careful” as we do quite often since she is a little dare devil, she will reply “don’t worry Daddy, it’s ok”.

Just recently Nora has been telling us “I have a tummy ache” sometimes shortly before she has to go poopoo. We’re glad she is starting to express how she is feeling but we can’t help but feel a little sad every time she says it because we know that we will be hearing this often.

She thinks it’s really funny to clap her hands and say “I got that skeeter!” as in swatting a mosquito in southern slang.

Nora has also been honing down her chicken clucking skills…..click here to see Chickie Nora

In the past few weeks Nora has started humming and singing. Her favorite songs to sing are “I see your hiney so bright and shiny, it makes me giggle to see it wiggle” and just as of today she started singing Elizabeth Mitchell’s “Ooby Dooby”.

Click here to see Nora’s Ooby Dooby debut performance :)

Sunday was a very exciting day. Nora went swimming for the very first time! Well not exactly swimming, more like floating around in her pool car and us holding her in the water but it was lots of fun. She took to the water right away and she didn’t even flinch about the water being a bit chilly. I guess it’s only natural she’s drawn to the water with fish oil running through her veins. :)

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Nora was so relaxed with the rocking of the water she almost feel asleep in her float.

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A dip in the pool sounds simple enough but this was one of those moments that’s a common activity for non-IV children but for us it was a monumental moment that we’ve been waiting for for a long time. Nora is now down from 7 days a week on TPN to only 6 days so we used her day off to take out her port needle and have some fun family time in Aunt Linda’s pool on Mother’s Day. It was a comforting feeling of familiarity that I hadn’t felt in a while. Since Nora has been born we’ve only been around both sides of our families just a hand full of times. Sunday was a just a glimpse of more special moments with Nora to come that we can’t wait to experience with her.

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Food Allergies


April 25th, 2009

We had Nora tested for food allergies a couple of months ago and it has really helped with figuring out what foods may work best for her. With short bowel syndrome her diet is still a bit tricky because just because she’s not allergic to something it doesn’t mean that her tummy will agree with it. Like cow’s milk for example, she’s not allergic to it but it’s too hard for her system to process without getting a bad tummy ache. The fat globules in cow’s milk are much larger and harder to digest than the fat globules in goat’s milk which she tolerates very well. But knowing what she is allergic to gives us more confidence when trying new foods with her and more importantly helps prevent Nora from suffering through an allergic reaction.

An allergic reaction to wheat pasta is what sparked the idea to have her tested.  Her reaction to the wheat pasta was pretty severe, she only ate a very small amount but within minutes after the first bite her upper lip was red and within an hour her entire face swelled and she became very flushed as well as having the typical sinus allergic reaction. Her eyes swelled so quickly that one almost swelled shut before we gave her a dose of Benadryl. Thankfully the reaction did not effect her breathing and her other symptoms were gone after 24 hours. Here is a picture of poor puffy face that I took as a reference to make sure she didn’t get worse that day.

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Sure enough her allergy test came back showing a high reaction to wheat gluten. That one was expected but there were a few that were surprising, like cucumber. Who would have ever thought that something that is mostly water would be so allergic to some people?

Here are Nora’s test results which shows all of the foods that she was tested for and how severe her reactions were to them.

click here – allergyjpg.pdf

Instead of the traditional skin scrape allergy test we had Nora tested by an allergy blood test. We were really excited to learn of this kind of allergy test when Nora’s pediatrician suggested it so we wouldn’t have to put her through the unpleasantness of the traditional allergy test. Our insurance didn’t cover the blood test so we did have to pay for it out of pocket but we thought it was well worth it.

Even before knowing Nora was allergic to wheat we always used rice as her main source of carbohydrates for two reasons, 1) people with short bowel syndrome commonly react negatively to gluten and 2) wheat products have a tendency to grow mold easily (even if it doesn’t smell or look moldy). Pretty much any product that can be made from wheat flour can also be made from rice flour. So Nora will be having a rice flour cake for her birthday. Since she has never had any type of cake before I wanted to make sure she would do ok with it before giving it to her for the first time on her birthday. Here is a little clip of Nora’s first experience with eating cake last week. She has been asking for more birthday cake ever since. :)

http://www.youtube.com/watch?v=tu_2yEVqMF4

It’s hard to believe that our baby Nora will be 2 years old in just 2 days. I guess we can’t really call her baby Nora anymore….well maybe I can, she’ll always be my baby. :) If this shot taken the other day doesn’t show what a big girl she is I don’t know what does.

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Drum roll please!


April 5th, 2009

And Nora’s small intestine has grown to………… 16cm!!
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The initial amount of 4.5cm she started off with has more than tripled in length in 23 months. This is an “approximate” measurement since it was measured from x-ray film but this is the most accurate measurement that can be taken without actually opening her up and putting a ruler up to her intestines. We are just so excited to have even an approximate measurement because up until we switched Nora’s GI doctors we had always been told that there was no way to know how much her small intestine had grown without surgery. (which always sounded a bit questionable to us)

Nora’s abdominal and liver ultrasound showed “no acute findings”. We just have the basic information from her radiology reports at the moment since we haven’t haven’t spoken to her GI doctors yet. Hopefully we’ll get to hear the short bowel team’s insight and interpretation on her transit time and the sloshing action that was seen in her small intestine before Nora’s next clinic appointment at the beginning of May.

Nora’s plasma citrulline level was supposed to have been checked with her last set of labs but the lab messed up and checked her cyclic citrulline level instead. Plasma citrulline levels give an indication of nutrient absorption through the intestine and cyclic citrulline level checks for RA (rheumatoid arthritis). So we’ll have to wait for her next round of labs in a couple of weeks to get an idea of how well her intestinal absorption is but at least we know she’s negative for rheumatoid arthritis. :)

Nora continued to feel pretty miserable all last week with sneezing, coughing and a runny nose.  So Friday we took her to see Min Tian, our Chinese acupuncturist who has been helping us with Nora since she was a tiny baby. Min thought that Nora was now dealing with a bad case of allergies and gave her some herbal and homeopathic remedies that have seemed to really help her in the past few days.

Even with still feeling a bit puny this week Nora is always up for some fun. Here are a couple videos of her riding her pony and dancing from this past week. She’s a bit hard to understand in the first one with her scratchy, horse voice but she is saying that her horsey needs batteries because she has about run them out with insisting that the song be played when she’s riding him.

http://www.youtube.com/watch?v=lhf88Ma_nqU
http://www.youtube.com/watch?v=y8k7PMO98Og

Nora did end up loosing about a half a pound since she got sick but thankfully her appetite seems to be picking back up. This weeks Omegaven shipment being held up in customs and Nora not having it for the past few nights isn’t helping her weight situation but I’m sure our Super Nora will gain it back soon.

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A Peek Inside


March 31st, 2009

Nora had her upper GI with small bowel follow through yesterday. We haven’t seen the official report yet but what we saw on the monitor and the comments made by the radiologist were very encouraging. Her small bowel is uniform and there is no bowel dilation. The unofficial guesstimate made by the radiologist is that her small bowel has at least doubled if not tripled in length since her initial surgery which would put her up to 9-13.5cm from starting off with 4.5cm. We are very anxious to hear the actual measurement. The radiologist who did the procedure, Dr. Albright, was the one who did Nora’s original upper and lower GI’s on the day she was born and also when she was a week old. He remembered Nora’s case very clearly and was excited to see how well she is doing.

When the barium was in Nora’s small intestine, it sloshed back and forth several times before emptying into the large intestine. Dr. Albright said this was something he doesn’t ordinarily see, usually it just goes straight down or it may slosh a couple of times but not as much as Nora’s did. It will be interesting to see what Nora’s GI doctors have to say about it and if this is something commonly seen in short bowel patients. Regardless is was a very exciting for me to see with my own eyes that Nora’s small intestine is holding onto substance longer than the norm for whatever reason.

Nora also had a complete abdominal ultrasound which surprisingly was harder on her than the upper GI. The tech had to push pretty hard on her tummy to get all the shots and it was obviously uncomfortable for her. All along I was worried about her not drinking the barium and being upset about having to fast for 5 hours beforehand but she stayed happy and drank the unflavored barium down like it was juice and was then upset when it was all gone….only a taste our Nora could love. :) We’ll be sure to post more details when we get them. Here’s Nora awaiting to drink her yummy chalking drink.

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Nora is feeling much better from her cold last week but she’s still a bit snuffy and it seems now it’s Daddy’s turn to have the cold. Hopefully we’ll all clear up soon and not keep passing it back and forth to each other.

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It was bound to happen eventually….


March 25th, 2009

Sooner or later we knew Nora would catch a cold even with all of the precautions we take to protect her from germs. She started sneezing and getting a runny nose last Friday. (how ironic it was the same day I prematurely celebrated the end of cold season being near in sight on Nora’s blog) We at first thought it was just allergies since everything around here is covered in a blanket of yellow pollen and Nora had been playing outside a lot that day. But then by late Saturday afternoon it was apparent that she had a full blown cold and was running a low grade temp. Thankfully it never reached above 100.8 and it went back down below normal after one dose of Motrin. Had it gone above 101 we would have had to take her to the hospital just as a precautionary to rule out a line infection.

Sadly but not surprisingly I’m pretty sure she caught it from me. I came down with what felt like a cold the weekend after we got back from Birmingham but since Nora and Montana were fine I chalked it up to bad allergies and I didn’t keep my space from Nora like I should have. Although it probably would have happened regardless just with us all living in the same house but I still feel bad that her own mommy gave Nora her first cold. :(

Nora has been feeling pretty miserable off and on but like a trouper she hasn’t been too cranky about it. Until it’s time for sleep…she’s either very stuffy or choking on drainage when she lays down so she has no interest in sleeping until she can’t stay awake any longer. When she starts getting tired she puts it in overdrive and runs herself out until she just crashes. There hasn’t been much transition time between awake and asleep the past few nights. The usual wind down and read books routine has gone out the door. Poor sweetie was so tired yesterday but would start coughing when she’d lay down so she fell asleep sitting straight up in the rocking chair. Rest is what she needs but hasn’t been getting very much of and when she does it’s not good quality sleep. We’ve been trying to keep her head elevated at night but she is such a wiggle worm we have to prop her back up all through the night.

Thankfully she’s showing improvement today and hopefully she will wake up feeling much better in the morning. Her nurse came by yesterday and listened to her lungs and they were clear. We have an appointment set up for tomorrow with her primary doctor since today is her fifth day of it but hopefully he will think she’s on the mend.

Nora’s weight had just started picking back up the past couple of weeks so hopefully this cold wont push her back down. She hasn’t had much of an appetite since she’s been sick and is mostly just drinking Elecare and munching on little snacks but no real meals. At least one good side effect of that is her poops have been smaller and thicker than usual.

Nora was supposed to have her upper GI and liver ultrasound this week but we rescheduled for this coming Monday. With no g-tube we have to count on Nora drinking the barium dye to avoid a tube down her throat. We don’t want to put her through that if we don’t have to and want to give her every chance to avoid it. At least the little amount of small intestine she has is in her favor for this procedure and she only has to drink a fraction of the amount as usual.

Here are some pictures taken during Nora’s visit with her Uncle Kia at Mammie and Pappy’s last weekend. She had fun playing cars and shaking shakers.

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New GI Team for Nora!


March 18th, 2009

Well I guess I need to start by retracting the statement I made in my previous post about there not being any good short bowel care in the south. A few weeks ago we learned of a short bowel program at Children’s Hospital in Birmingham, AL. We called them up, liked what we heard and took Nora up last week. It is definitely a trip, between 6-7 hours each way (depending on how often Nora needs a break) but once we got there and met the team we realized that the effort to get Nora up there was well worth it.
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A sleepy head Nora getting ready for the trip. (and no, we didn’t put her in there)

The Children’s Hospital at UAB has been treating short bowel patients for a long time but their short bowel program with weekly clinics is fairly new, it just started up last fall. Even though the program is new the team is made up of very knowledgeable and experienced pediatric GI doctors who are eager to stay on top of the latest short bowel research and treatments. They even have Omegaven! They still have to obtain individual FDA approval for each Omegaven patient but they are working to get FDA approval for the entire hospital so they can be a provider. Many hospitals from all around the south are sending very sick short bowel babies to Birmingham for their treatment and Omegaven.
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Daddy and Nora in the lobby at Children’s

Our experience with the short bowel team in Birmingham was like night and day compared to Nora’s previous GI care at Shands. The word “team” being emphasized because they truly work as a team. Their team consists of a pediatric GI specialist, a pediatric GI surgeon, their head GI nurse (who handles the Omegaven) and a dietitian who specializes short bowel. At Nora’s appointment they all came in together to discuss Nora’s situation. Communication and responsiveness is key to good short bowel mangement and so far they have proved to have both. Before we even took Nora up there we received more feedback and were responded to far more quickly than we ever were at Shands. I guess to sum it up, they just “get” short bowel syndrome. They understand that each patient is different, they understand that just because Nora is doing great that she is still very fragile and in need of being treated as an individual. It was such a breath of fresh air to have open discussion with new ideas and to have new treatment options presented to us instead of us presenting ideas to the doctors. (not that we wont continue to do our own research, but it is a very comforting feeling to know we’re on the same page of wanting to progress and be pro-active with Nora)

The general plan we discussed for Nora was as follows:

  • add more complex carbohydrates to diet
  • add more fiber to diet
  • decrease fat intake
  • concentrate on a low oxalate diet
  • add either pectin, Benefiber or Questran to diet to slow down food transition time in the gut to increase absorption and in turn thicken stools
  • check plasma citrulline level with next set of labs – plasma citrulline is an amino acid produced in the liver and intestine, new research is finding that checking this level can be an indication of nutrient absorption through the intestine and is being used as a guide to predict successful weaning down of TPN
  • to do an upper GI w/ small bowel follow through – this will show how much Nora’s intestine has grown since her initial surgery, show if there is any bowel dilation and show the transition time (how fast things move through the intestine). All of this information will help them help us manage Nora’s SBS better.
  • do an ultrasound of Nora’s liver  – they suggested this to be done because they have seen in some SBS children (not many, but some) who suffered pre-Omegaven liver damage to have permenant liver damage even though the bilirubin and liver enzymes returned to normal. They do not suspect this to be the case with Nora but just want to rule it out with a non-invasive test.
  • adjust Nora’s TPN recipe according to her labs

Montana and I are on board with all of their suggestions and are very excited about them. Nora will be having the upper GI and ultrasound next week. They really wanted to do it in Birmingham but when we told them how traveling has messed up Nora’s system in the past they were very understanding on why we didn’t want to add one more stress to her system at that time and did not push us to do so.

Overall Nora did very well on the trip. It was the longest distance she has ever traveled. She only got really fussy during the last hour or two going up and back. Oh how thankful we are that our car has a DVD player! We made lots of stops along the way for her to get out and run around. On the way home we let her pick out a new toy at a truck stop to keep her entertained. They had girly toys galore but what did our little princess pick out….a snake! Montana and I thought it was too funny and was perfect for her tough little self.
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The trip was very tiring and it did have it’s stressful moments….like getting extremely lost when we first got into town then switching hotels at 10 o’clock at night after realizing the one we had booked over the internet was not appropriate for Nora. Even after we found a more comforting place to lay our heads, me with my germaphobeness had a huge amount of anxiety about having Nora in a hotel room, even after bleaching and Lysoling every surface. But it all worked out fine in the end and the highlights definitely outweighed the negatives. Nora even had her first in-person meeting with another short bowel child at clinic! Little Emmanuel was just a little older than Nora and he just happened to be the first baby on Omegaven in Birmingham.

They want to see Nora again in about 8 weeks. They don’t have a set time schedule on how often they see each patient, they base it on the individual child’s condition. They are very willing to work with our local doctors and do a lot of communication via e-mail so we can keep them up to date on how Nora’s doing. They’ve been working with Dr. Crooms’ office on the details of the upper GI for next week which makes us feel oh-so much better about the procedure and having Dr. Croom’s involved is always a plus. It was originally scheduled for this week but Dr. Crooms wanted to have the preferred pediatric radiologist take care of Nora and he is out this week. Which radiologist may sound like a small detail when it comes to a common procedure for SBS children but to us it makes all the difference between dreading next Tuesday and knowing that she’ll be in the best hands possible.

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An Apple a Day…


February 22nd, 2009

I feel like I haven’t updated on Nora’s medical status in a while, but there really hasn’t been much new to report lately, which is a good thing. Overall she’s been doing really well but she hasn’t gained any weight in over a month. She’s been hanging right around the 22lb mark since mid January. Her trend had been a gain of at least 1/2lb per month. We are hoping that the stop in weight gain is due to the teething marathon that’s been going on in her mouth recently. For the longest time Nora only had six teeth in the front and then all of a sudden it seems that she’s getting a mouth full of teeth all coming in at once, molars and all.

With a mouth full of new choppers Nora can explore new foods which is really exciting. She munched on a fresh apple for the very first time last week and I think it was the most excited I have ever seen her eating something new. She’s had apples before but they had always been cooked. After her second bite she said “mmm, favorite!”
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Even though Nora is doing good at the moment and staying healthy, her GI care has come to a slow aggravating process in the past few months. We are constantly researching new things on our own but it makes for a long drawn out battle to make headway when her GI team is dragging their feet on the most basic issues of Short Bowel Syndrome and TPN management. At this point we feel like we are pretty much alone in her SBS care with little guidance. Nora’s local pediatrician is wonderful and willing to work with us but he just does not have the expertise that is really needed to manage her TPN and dietary needs.  The south is good for a lot of things….sunny beaches, country cooking, nice people….. but SBS specialists is not one of them. Her current GI’s are out of town but still in Florida, it’s looking like we will have to go out of state to find a new GI doctor that’s worth our while.

Nora has her monthly (this time semi-monthly) GI clinic appointment coming up this week. We have a long list of issues to be discussed with her doctor. We don’t want to burn any bridges with them because unfortunately until we find another team we need them to manage Nora’s TPN. And as unhappy as we are with her current care, we don’t want to switch to a new doctor just to switch without knowing for sure that we’re moving her to better care. So far after talking to other SBS parents, talking with other SBS doctors and nurses from around the country, along with research, it seems that the closest specialists with a good reputation are over 700 miles away in Ohio. Of course if Nora wasn’t doing so well or having an issue we would take her elsewhere immediately. But with her so stable at the moment we don’t want to drag her up north in the winter during flu season. So for now we’ll continue our search for a new doctor, try to get her current docs to get their act together for the next few months, and wait for springtime.

A side from all of the medical hub-bub, Nora is still our amazing little angel with a growing sense of independence and personality galore. She is still the sweetest thing but she definitely is developing sassy side and loves to practice making her “mean” faces in the mirror, which she is quite good at. :) She is sweet, girly and loving but by no means wimpy in any sense of the word. She is tougher than nails and knows what she likes and doesn’t likes. She has started telling her own version of jokes and laughing at them. She is very shy though so only those close to her get to see the full Nora show. We’re just now starting to get a glimpse of the little person she is turning into and it’s such a gift to watch.
Oh sweet Nora, thank you for being the wonderful little being that you are and bringing us so much joy.
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