Feeding Tubes are NOT for losing weight!

16 May

When I first heard about people using a feeding tube as a fast way to lose weight my first reaction was complete and utter disgust, followed immediately by outrage. My ladybug has been tube fed her entire life. It started off as an NG tube which goes through her nose into her tummy. It was so difficult to see my daughter have to go through this, however she had no choice. If it wasn’t for the NG tube she wouldn’t have been able to get the nutrients needed to survive.

During Ladybugs most recent hospital visit, the student nurses were in our room chatting about it being the last day of their placement. While our student nurse was letting air bubbles out of my daughters g-tube, the other student nurse looked to me and said. “Man I wish I had a feeding tube, life would be so much easier, and think of the weight I could lose.” She had left the room immediately after, when all I could do is stare at her with the are you freaking kidding me look. I then wrote down what she said in Ladybugs medical journal as I was so in awe that someone could be so ignorant, so shallow, and so daft!

Not even a couple of weeks after we returned home I received a message from another mom on a Feeding Tube Awareness group I belong to. It was about a segment that Kathy Lee and Hoda did on The Today Show regarding a new weight loss fad known as the K-E Diet. It is where the woman is fed through her nose for 10 days so she can lose weight for upcoming events like weddings. Kathie Lee Gifford and Hoda Kotb laughed while they referred to the weight loss trend as “almost kind of sick” and “ingenious.” (You can watch the clip here; segment starts at 5:10.)

“That tube has to stay down, there could be some infections who knows what the other problems are with it, but you’re carrying around a bag all the time. And if it gets knocked out, what if you fall down,” Hoda says laughing.

There was outrage across all the feeding tube groups not only over this new fad diet but over the fact that Kathy Lee and Hoda were in essence joking about feeding tubes.  A lot of people were upset that they were making light of the situation and should have at least mentioned actual people who rely on feeding tubes everyday of their lives in order to survive. The latter I completely agree with. From the little tidbit I’ve seen I feel that it’s definitely not a show that would take the time to research feeding tubes and their actual use, which is most likely why they found the whole idea comical. I do feel that the fad diet is wrong in so many ways. What ever happened to exercising and watching what you eat? I couldn’t possibly fathom a reason as to why a woman would put herself through this other than vanity. I also wonder how the doctor that is doing this can be so unethical.

It is a truly sad statement of our society today when a person would resort to inserting a feeding tube through their nose to lose weight.

A feeding tube enabled my daughter along with so many others to live. Its actual use should not be taken for granted in order to shed a few pounds and fit into ones wedding gown.

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A Ladybug Update

14 Apr

I am so happy to say that Ladybug is home from the hospital.  She did indeed have pneumonia – the good thing is that her body with the help of some i.v. fluids, a lot of sleeping and extra attention by nurses allowed her to heal quickly. (by her standards of course)

It is also wonderful to say that we now have Ladybugs Squiggles.  It is fantastic!  I can’t thank everyone enough for their support in our mini fundraisers – our family, friends and even strangers helped to get the Squiggles earlier than we thought possible.  I want to send an especially HUGE thank you to Lovable Labels.  We will continue to run the online fundraiser because there will be a very exciting new piece of equipment within the next year that Ladybug will be needing.  Details below. Plus camp season is coming up – Lovable Labels has fabulous deals on Camp Packs, Medical/Allergy Alert Labels and Medical ID bracelets.  Believe me, coming from a mom of a little girl who has very complex medical issues and is on a plethora of meds the latter two come in very handy.

Unfortunately our camera has had a rather mysterious accident and the lens is in need of some serious tlc so we haven’t been able to get a lot of pictures of Ladybug in the Squiggles. Here are a few that we’ve taken out and about though.

Ladybug with Henry the Lamb
(Taken at my folks farm)

Not only is the Squiggles perfect for Ladybug to tour around and see the world,  she is also very comfortable in it and has no issues whatsoever taking a little snooze while on the move.

Ladybug has also been making great strides during tummy time. She now thoroughly enjoys being on her tummy and has been joyously working hard on lifting her head up. I absolutely love seeing the proud look on her face when she achieves this.

We met her new pediatrician on Friday – I was blown away by how hands on she was with my daughter and how she has already taken the initiative to put us in touch with a special dentist who works quite often with children who have complex medical issues.  She also noted how Ladybug was communicating with me via different sounds and is going to begin looking into a communication device that would be suited for Ladybug.  This was like the icing on a perfect cake. Our new pediatrician could recognize what we have known for some time – that Ladybug is capable of communicating and really needs an outlet to let her do so.  Thus our next major investment. I honestly have no idea how much a communication device will cost.  I suppose it depends on the type and how technical it would need to be.  It’s definitely time to start researching and most importantly asking other SN (Special Needs) parents who have been down this path.

I must say it has been a whirlwind couple months – the great news is that everyone made it through okay.

1 Week Shy

2 Apr

We nearly made it the entire year without a single hospital admission. Insert fireworks and triumphant music here. There were several close calls but up until last week Ladybugs health had been fairly consistent minus the ear infections.

This past Thursday Ladybug was admitted for an upper respiratory infection and dehydration as she was spitting up feed every time she coughed.

Yesterday things were improving – fever had been gone for a few days, she was tolerating feeds at a very low continuous rate and was beginning to smile again.
This morning she is very lethargic, fever is back and she is vomiting again.

Despite my extreme frustration with the jr. residents inability to listen to what I’m trying to say without being interrupted with a “Ya, ya, ya” (I foresee a lovely little post regarding this in the near future) I’m hopeful it’s just a stomach bug she’s picked up and we’ll be out soon.

All in all things are fairly under control – she’s in isolation so we’re unable to go for walks around the ward. Cabin fever has begun to set in and I’ve organized everything from my purse to her book and toy bag to the diaper and cloth stack at the end of her crib.

Finally broke down and bought a mindless fashion mag. Nothing like reading about the 742 spring must-haves to take my mind off things.

To See Or Not To See

8 Mar

When ladybug was a mere few months old we were told that she would most likely have little to no vision. As time went on nothing had really changed, all the docs could tell us was we would have to wait and see but it wasn’t promising.

This past year we have noticed our little girl turn towards sources of light, tracking toys that light up, and looking at 3D butterflies on her wall. With the help of the Blind-Low Vision team and the introduction of the Little Room so  many possibilities have opened up.

Our most recent visit to the ophthalmologist at Mac Kids led to a new discovery. Ladybug has an astigmatism in both eyes, quite a bit more so in the left. There was a CHANCE that glasses could help improve what vision she does have and it couldn’t hurt to try.

I didn’t even hesitate. If there is anything, anything at all that I can do to help my little bug live a better life I will do it. So the search began for the perfect glasses.  Pink ones, purple ones, teal ones, plastic ones, wire frames, round rubber ones that made her look like Mrs. Potato Head.  There were so many but not one fit her properly.  After a bit of research I found a company called Lafont that had a line of glasses for infants and children. The ones for infants had a very soft backing of silicone not only to help prevent the glasses from sliding down her little bridge but also for making them more comfortable. They were perfect. The only issue was that the company was in France and all the stores that were listed on the website were overseas. I pulled up a new page and asked the Google Gods if any places in Ontario carried the line.  After some searching I found that Glazier Opticians in Oakville carries Lafont, two seconds later I was on the phone and made an appointment to come in the following day to try on a few pairs.  As luck would have it the sales rep from Lafont would be in and have many options.

This is when we found THEE pair.  They are pretty, pink and perfect. Ladybug has now had them for nearly 3 weeks. Within the first few days she had discovered how to slide her finger down her forehead and pull the glasses to her mouth. The moment I saw her doing this I had flash backs to the great battle of the NG tube. (Nasogastric feeding tube) She used the exact same technique to repeatedly pull out her NG tube no matter how much Tegaderm tape we would put on her little cheek.

On the bright side she was using her hands to bring something to her mouth – albeit not the traditional way that most “normal” children do but that didn’t matter one bit.  Besides normal is far too predictable.

This past week she has been keeping the glasses on pretty much all day. It’s hard to tell if they are making a huge difference but I do notice little differences in how she looks at things. Her mirror ball and other toys in the little room will hold her attention for longer periods, she seems to be giggling more often, and just the fact that she is keeping them on suggests to me that they are helping her see the world in a new way.

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My List of Awesome

10 Feb

Little warning – this post will go into detail on everything from blood work to bowel movements. It’s not for the faint of heart or those with a weak stomach. That being said it is the awesome that I find in our day-to-day life.

When I first heard about “The Book of Awesome” by Neil Pasricha I was a bit surprised that such a book could become so viral. But it is the feel good light read books like his that give us the warm tingly feelings inside. It takes us back to times when we could relate to all the awesome things that were talked about. Whilst I still have these brief moments of awesome, they have taken a different path since my little ladybug came into my life.

This is not a typical post but I wanted to share the things in OUR day-to-day life that I find awesome.

Trips to the local children’s hospital
When we arrive in the above ground parking lot with 5 minutes to spare before ladybugs appointment and we find a parking spot.

Running into nurses, doctors and staff who are so happy to see us especially since we are just visiting.

Accessing ladybugs port on the first poke and watching the blood flow nicely through the tube. Every month we bring ladybug in to have her port-o-cath flushed with heparin. This prevents clotting and a whole lot of headaches. Two very big concerns with the port are all the germs that could cause a line infection or her blood clotting.

Winning the parking machine lottery. With parking in the Standard Park parking lot at the hospital it is typically $20.00 a visit. However every once in a blue moon if our appointments go smoothly and we are in and out, that horrid machine will become like a slot machine. We put our ticket in fully expecting it to say $20.00 and it says $18.00.  I know what you’re thinking two dollars you are excited over two dollars? Darn right!  For some strange reason I feel like I’ve just won the lottery and walk away with my two dollar coin and a big smile.

Home Healthcare and Community Support
Having our fabulous nurse Lisa back. I can’t begin to stress how wonderful it is to feel comfortable doing the simplest of things like running to the grocery store, having a night out with my baby daddy or being able to just veg for a couple of hours knowing that our daughter is in great hands.

A physio/occupational/speech therapy team who look at my daughter and see more than just a cute little baby they see potential.

Being able to share a video with the speech therapist of ladybug taking turns playing the tambourine with me and watching her in awe because she can now see what we’ve known all along – that ladybug is capable of communication.

Watching my daughter sign “more” on her own for the very first time when her physiotherapist stops bouncing her and singing songs. FYI crying in your childs physio/speech therapy session is a  lot more common than you’d think.

Friends & Family
The support both physically and emotionally I get from our family and friends near and far reminding me that I am never alone.

Getting an email from a dear friend letting me know that it isn’t much to offer but she is always there if I need to talk. After hearing of a second child from our CDG family passing away in under one week her offer was more than enough and exactly what I needed.

My mom coming to help out when ladybug has a day full of appointments  at the hospital especially if she’s fussy. (Ladybug not my mom)  :) Or staying up all night in the ER with me when ladybug was really sick.

Getting a hug from my sister-in-law to be after my first miscarriage. She’s not one to give out hugs often and willy-nilly, which is probably why that hug from her meant more to me then I could ever begin to explain.

My cousins little guy making room in the bath tub so the baby (ladybug) could have a bath too. Warmed my heart to see how much kids are drawn to my baby girl.

Home Life
Watching my princess snuggle up with daddy and become so comfy she has a huge puddle of drool on his chest.

Signing and saying “doggy” with ladybug and seeing her face light up as the dog comes over to give big kisses and be pet.

Going into the nursery to set up the evening feed when ladybug is half awake, watching her wave her arm until we rest our hand on her tummy so she can put hers on top and hold our fingers.

Poopy bums occurring every day once or twice a day not 9 times a day or every 3 days.

Trying to clean up a little one after her bowels decide to kick into high gear. The entire time she is kicking like a little froggy, trying to roll over, and is just so darn happy one can’t help but laugh at the huge mess left in the aftermath.

Keeping with the same theme – finding the PERFECT amount of Restoralax to add into the formula. It must be a slightly rounded 1/4 tsp nothing more or less.

Getting through the entire week without the feeding pump “NO FOOD” alarm going off even though it is full.

Listening to ladybug talk up a storm in her crib at night instead of sleeping.

Finding new tickle spots to make my baby girl giggle.

Snuggles. She’ll nuzzle her little head right into your neck, wrap her arm around yours, and will enjoy every second.

Seeing the mischievous side of my ladybug through her eyes. Right before she is about to do something she knows she shouldn’t she gets this cheeky little grin and her eyes light up and open wide. Most recently it was her wiggling her way almost completely out of her car seat.  She was unbuckled and lounging while eating her lunch. No need to worry I was right there watching her. The best part was when I tried to shift her back into place she became stiff as a board and giggled.

My daughters smile.

So there you have it. This is a little insight into just a few of the things that brighten my life everyday and make it awesome.

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True Strength

3 Feb

This morning I  found out that a sweet little boy we’ve come to love from our CDG family passed away in his mothers arms. I sat staring at my computer screen for what felt like an eternity trying to find the right words to say to this amazing family who had just lost their son. I’m sorry had been said so many times but what else is there to say. My heart feels like it has been broken into a million pieces and even though I’ve never met this sweet little boy in person he is family and I can’t stop crying and thinking about how hard this must be for them.

I went into ladybugs room early this morning and picked her up and held her so tight trying to muffle my tears so I wouldn’t wake her.

Each time a child from our CDG family passes away it unlocks that box that I keep trying to hide deep inside me. It makes the horrible things that this disorder is capable of seem to move from a possible prognosis on our children’s medical files to reality. I feel like I’m in an after school special waiting for the heartwarming music to begin when I just keep saying it isn’t fair! It just isn’t fair! There is no treatment for CDG, there is no cure for CDG it just isn’t fair!

My heart goes out to the family – I really wish I had the words to say to take away the pain that they must be feeling. I wish there was more I could do.

Ladybug is cozy in my arms now, chatting and soaking up every ounce of the continuous snuggles she’s received so far today.

I must be strong for my daughter.

It’s okay for us to fall apart every now and again – we’re human. It’s the strength we find deep within ourselves even when it looks impossible that helps us get through those times.

I  came across this on one of the groups for parents of special needs children I belong to – it is so true.

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Looking Back

31 Dec

It’s hard to believe it has been 2 years since we were blessed with our little ladybug. Sitting here writing on the eve before a new year begins I can’t get over how far she has come. The milestones are still occurring – her head control is increasing every day, her cute little chatter that only a few can interpret is now starting to form into “Ma” “Na” and “Ga” sounds, and she is now 2 years old and an astonishing 16 lbs.

There have been so many ups and downs thus far – let me tell you the thrill of her first common ear infection has long since gone. Currently my little ladybug is fighting off her 3rd in a little over a month. This one is by far the worst. It is still to this day so upsetting to think about how much pain such a tiny little girl is enduring and has had to endure in her 2 years of life so far. Like most parents I wish I could take all her pain away, sadly all I can do is cuddle her through the screaming and tears and tell her every moment I get how much I love her. However, this ear infection like everything else she has been through will pass and we will get to see our happy little bug again.

Within these 2 years our little ladybug has learned exactly what she needs to do to get attention – crying…. no, not her style,  throwing things…not yet, grinding teeth…ding ding ding.  At first it was an instant gratification for her teething then that cute little mind put two and two together and discovered how when she would grind her teeth we would give her a teether, massage her cheeks, or sing songs.  So now if she is playing in her “Little Room” newly made by ladybugs Nana and Papa, or chillin’ in her bean bag chair and wants our attention she just has to grind her teeth. Especially since it is reminiscent of nails on a chalk board at times. It has become quite the little game. And I love every single second. It is just one more bit of proof that she understands cause and effect. Ladybug has even made her television debut and was featured in Where Dreams Take Flight.

Little Ladybug Hugs has given me such a wonderful opportunity to express things I could never do in person right from the beginning. I  know people wanted to hear how she was doing during her many hospital stays, but so often I couldn’t muster the strength to say a word without bursting into tears. Whereas the words flow with ease when I’m writing.

I’ve learned that even if one bad seed wants to make herself feel better by saying hurtful things,  I can never truly move on without forgiving her – which I have. “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.” – Buddha
What matters the most is the crazy huge wonderful outpour of well wishes I received after writing A First For Everything.

The post that has had the greatest impact on me was in the midst of ladybugs gi bleed - Perspective. No matter how bad things may seem at any point in time there is someone else who is going through so much more. “Be Kind for Everyone You Meet is Fighting a Great Battle” – Plato

During these past two years we have come across several amazing doctors – they had completely restored my faith that not every new resident is a narcissistic arrogant ass. These two doctors that I wrote about in Mensch and And…We’re Home  are what doctors should be – our health care system desperately needs more. If I had the money and my ladybugs health was stable enough my ultimate dream would be to one day go to medical school and follow in Dr. Levy and Dr. Nayar’s footsteps and become the type of doctor that listens to parents and would never underestamate the knowledge they have….perhaps one day.

For the most part I will update Little Ladybug Hugs once a month – unless of course there is news to share. Rather than having to check to see if I’ve added a new post there are now TWO ways to be notified of new postings.
1. As you scroll down this page keep a look out on the right hand side for BOLD letters that say SUBSCRIPTION. All you have to do is enter in your email address hit SUBMIT and presto! You will now be notified via email when I put up a new post.
Please don’t worry I promise WordPress does not send out spam or sell your email address. You will only receive notifications.

2. If you have a Facebook account you can ask to join the private group here. I will write on the wall of our Little Ladybug Hugs group with my latest post as well.

Wishing everyone a truly magical new year!

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