Please read this...

I just so happen to be a procrastinator of massive proportions. If there were an award for procrastinators, which there should be, maybe mine is late, I would probably be one of the winners. With that said, I was supposed to mail out these fundraiser letters for the 9pminus support group, and didn't. So, I'm sending a virtual mailer right here, on my blog. Obviously, I don't count on raising $100,000 like Kelle Hampton did in honor of her daughter who has Down Syndrome (I'm sure the National Down Syndrome Society loves her), but, I'd like to give you a little information and invite you to give if you feel compelled to give.

What is 9pminus? It is a deletion on the short arm of the ninth chromosome.

How does it happen? Most cases occur de novo, or by chance, up to half occur due to a balanced chromosomal rearrangement in one parent--the child in these cases has inherited an unbalanced translocation. Walter and I have not been tested so we do not know if Isaac's deletion is inherited or, by chance.

Typical Characteristics of a 9pminus child: mild to severe mental retardation, developmental delay, hypotonia, trigonocephaly, small midface, small mouth, high or cleft palate, small ear canals, narrow ears, upslanted eyes, narrow hands and feet, congenital heart defects, renal malformations, hypospadias in boys, inguinal or umbilical hernias, GI reflux, constipation, scoliosis, feeding problems, speech problems, seizures, low muscle tone, sensory integration issues.

As quoted from Isaac's genetic report:

Children with 9pminus tend to have delayed onset of speech and independent walking, although they generally do attain these skills. Once established, speech tends to be fluent although narratives may focus on minor details and emotional states rather than provide a concise summary of the situation (Chilosi, Am J Med Genet (2001))" Strong social skills and easy interactions with others, including strangers, are common. Children are developmentally delayed and have mild to moderate mental retardation (IQ range: 33-76).

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If you've been following my blog for a while, you know that we've faced many challenges with Isaac and it took over a year for us to get his genetic diagnosis and after that, all of the puzzle pieces seemed to fall into place. Isaac has taught our family so much over the past two years. We've been thrust into the world of special needs, which was never a place I imagined finding myself, but we are grateful for what we've learned and the amazing people we've had the opportunity to meet along the way. The downside of Isaac's syndrome is not all of that medical stuff I shared with you, but the fact that 9pminus is extremely rare. Less than a year ago, Isaac's geneticist told us that less than 300 people in the world have been identified as having a deletion on their ninth chromosome.

Hence, the need for this fundraiser. The Chromosome 9p- Network strives to share new information with families and also connect families in order for them to offer support with one another. We have some idea of what the future will hold for Isaac, but on the other hand, there is so little research, that many questions are left unanswered. The 9p- Network is a non-profit organization and made up of parents who work really hard to reach out to other 9pminus families. Any amount of money you are able to donate will allow funding for the annual Yearbook that is printed for each family and also the planning and preparation for the Triennial Regional Conference (which we look forward to attending!).

As printed on the invitation I was supposed to send in the mail:

You are cordially invited to

The 9p- Springtime Tea

In honor of 

Isaac K.

Our tea is given you see, 

To support our 9p- families.

Your funds will allow our programs to blossom, 

so we can help our children, who are awesome!

It's the most delightful benefit you will ever attend, 

And it's just support and love that you will send.

On Sunday, the 13th of May

We'll have a tea, so save the date.

No cookies to bake or silver to lend, 

No linens to launder or beg from a friend. 

You don't have to worry about what to wear, 

And no car fare or parking to give you a care. 

So here is a tea bag, don't put it away.

(pretend you have a tea bag, okay?)

Mark your calendar and remember that day. 

Sit down and relax, sip the tea at your pleasure, 

Your generous gift will always be treasured. 

Place: Home Sweet Home

Date: Sunday, May 13, 2012

Time: At your convenience

RSVP: Give with your heart

9p- Springtime Tea Donation

Donor Name: 

Address: 

In honor of:

Donation amount:

Please make all checks payable to Chromosome 9p- Network

*Donations from outside the U.S. should be made in U.S. currency or through PayPal at www.9pminus.org

All donations are tax-deductible. 

THANK YOU!!!

Mail Donations to: Chromosome 9p- Network P.O. Box 524 Appleton, WI 54912

And just from our family, thank you for reading our story and supporting our family! 

Sierra, Walter, Isabella, Isaac, and Stella

Counting Sheep

Mom! I love Isaac, and I was about to cry happy tears because I love that he's my brother.

Moments like that, make me happy. As a mother, what more could I ask for? I want Isaac and Isabella to be close. Actually, they don't really have a choice, because one day, she will have responsibilities with him that we never thought she would have. Sometimes Walter and I worry that Isabella's needs are put on the back burner because of Isaac's needs, but in a way, this is just how family works. We compensate for each other, and we have to learn that from the start. It happens in families that don't have a child with special needs. The older child has to learn that someone else has greater needs that moment than their own. It's a hard lesson to learn, but one that I think my parents worked hard to instill in us.

It's like taking the time to see my brother off to his spring dance. We didn't have to go. Both kids were crabby and I knew they would be unhappy most of the time we were at his girlfriend's house, but I told Walter, I have to do this for Josh. I'm glad we did. And yes, both kids cried most of the time we were there.

It used to be that Isabella had her computer time while Isaac was napping. This was because anyone spending time on the computer in front of him, made him think he should have computer time. And all of that led to a lot of unnecessary tantrums. But now, he's okay with just watching.

Speaking of tantrums. Isaac is perfecting them. We're talking full blown screaming, head banging, flailing, throwing anything in sight....mmmhmmm, it's fun. We're having so much FUN around here. You should be jealous. The screaming is usually induced by our recent attempt to cut back his TV time. He's an addict and needs a serious intervention. TV Addicts Annonymous, we have a new program member for you. I know what you're thinking, this is all your fault. You're the parent...blah blah blah. Well guess what?! I completely agree! But once upon a time, the only way to get the kid to swallow was if he was watching Dora or some other show that is equally as annoying or worse, Elmo (seriously, whomever created Elmo, should be in jail). So anyway, we're trying to cut back, and use other ways of distracting him while he has a feeding. But he usually gets really mad and throws things at us, so I've started wearing helmet--just kidding.  Today the feeding therapist was talking about how we really need to work on compliance and our behavioral issues. I agree. So I don't recommend coming to our house for many months, unless of course, you don't mind having things thrown at you.

On a happier note. We went to a sheep farm. A little back story, the little girl in the first picture, her name is Ellie, and she also has a feeding tube. Now, how on earth did I track down another kid around us with a feeding tube? I met her mom in line at the grocery store. Yep, we have a pretty amazing grocery store. It gets better, I met Laurie in line at the grocery store the day before Isaac's PEG surgery. I know! Crazy! We exchanged numbers and she said to call anytime, which I did, at about 9:30 p.m. the night we got home from the hospital when I was having a very emotional freak out moment regarding Isaac's newly placed tube. She was amazing, and I am so thankful to have met her and her wonderful family. They have quite the story, and she and Ellie are fighters, so we get along.

I hope this Llama makes you laugh. It made me laugh. 

I keep forgetting to write about something really great. You know the blender company, Blendtec? I emailed our story to them, and wrote about how I wanted to start Isaac on a blenderized diet so that he could "eat" whole foods, and they donated a blender to our family. A blender may not seem so cool, but Google it, and you'll think it's cool. And if you know anything about constipation and administering suppositories, you'll really think it's cool when I tell you that Isaac is pooping every day. Yep, now you're hooked with the coolness, right? What's going in his feedings....

(not all at once, of course) whole milk, whole milk yogurt, multi grain cereal mix, avocado, banana, peaches, pears, spinach, carrots, flax seed, wheat germ, almond butter, cottage cheese, beef barley soup, stuffed bell pepper soup...

We're down to about sixteen ounces of formula a day and the rest is blenderized food. Aside from his new ability to poop on his own, he also seems to have more energy. And I am happy that he's getting real food, even if it isn't by mouth. I still count calories, fat, and protein so that he is getting the same amount as he would with his usual formula intake, but he's up to twenty pounds, so we're doing really well. 

Feeding Tube Awareness Week

It's Feeding Tube Awareness Week, so I thought I should add my two cents...

I grew up in the world of breastfeeding. And in that world, extended breastfeeding is what you do and you don't care what other people think when you put your baby to breast in every establishment you've ever been in. It's just, right. It's the most natural way to grow your baby, and eventually, toddler. It's a sacrifice that you make as a mother, to not use bottles, to never be away from your baby for more than an hour or two (you're probably lucky if you can get away with two hours). With Isabella, I could never imagine it any other way, that's what I wanted--attachment with my baby. And I was so upset when she started (happily) eating solids. 

Things were different with Isaac. When I was pregnant with him I just wanted him out. And when he was breastfeeding, I just wanted him to wean. He has a very high, narrow palette, which was part of the reason why I didn't enjoy breastfeeding him. And he was always angry and would never nurse for comfort. I felt like I was lifting up my shirt a million times a day and still couldn't make my baby happy. Anyway, he weaned in July, right after his second surgery. I didn't try to get him to continue. Instead, I continued force-feeding him with that dumb squeeze bear, hanging on for dear life until he would have his feeding tube placed. And then, right before his PEG placement, I felt really guilty that he wasn't nursing. But it's fine, I'm over it, and I know that in reality, breastfeeding wasn't working for either one of us. When he was in the hospital though, they used that word: formula. And it was like a slap in the face every single time. They'd say it, and I'd look over at Sarah, or most of the time try not to look at Sarah or my mom, because I couldn't believe I was in this situation, and it felt like my ultimate failure as a mother. Here I was, this extreme breastfeeding advocate, giving my baby formula, through a tube no less. But Sarah reminded me, this is what it is for--these extreme situations and we should be thankful that we have it available. (By the way, if you chose not to breastfeed your baby, please don't be offended. Each mother makes a choice, and sometimes your choice is governed by medications you are on, surgeries you've had in the past, postpartum depression, sexual assault that makes it hard for you to have physical contact such as breastfeeding, or a host of other things. It's a personal choice, and you have to do what is best for you and your family. That's why I gladly weaned Isaac when he was only fourteen months. It wasn't working for us.) 

It's been almost a year since the word, "feeding tube" was suggested for Isaac. We had our first appointment at the Feeding Clinic and couldn't believe they were actually suggesting our son would need a feeding tube. Walter holed up in his shell of anger and I went into my usual "research mode". Looking back, all of that stress over the feeding tube itself, was so unnecessary.

The goal was to do everything possible to avoid Isaac's need for the feeding tube. I can safely say, I did everything possible. I essentially kept my child alive during those horrible months of trying to nurse him and also spent most of my day squeezing milk into his mouth through a straw and distracting him with tv so that he would swallow. I was blamed for his failure to thrive. I was told that I wasn't nursing him enough, or long enough. I was told that something was wrong with my milk. Thankfully, I have a substantial knowledge base of breastfeeding, to know that all of these things were false. But to prove to various doctors that they were wrong, I went out of my way to meet with an MD who is also a Lactation Consultant. She assured me, there was more going on than was meeting the eye. Finally, someone validating what I'd been trying to get across for so many months. All of that, began the tedious journey to discovering Isaac's genetic abnormality, odd nasal passage and small airways, low muscle tone throughout his body, and so many other things I'd been arguing with doctors about. Just as a side note, after all was said and done, I did receive an official apology from Isaac's pediatrician, for not listening to me and for not being proactive in helping me figure out what was really going on with Isaac. 

Eventually, Isaac's oral aversion became worse and worse. I'd get a small amount of puree in his mouth and then he would scream until he made enough drool for the food to just fall out. On the worst day, he went forty minutes without swallowing, just so that he wouldn't swallow the puree. That's when I gave up on solids. And squeezing the milk in his mouth wasn't much better. Ultimately, we decided that he needed the feeding tube. We needed the feeding tube. My marriage needed the feeding tube. None of this was working, and no one was happy. I didn't have any time for Isabella. My entire day was consumed with counting calories, and ounces, and mixing milk, and tricking Isaac into swallowing, and praying that his weight check that week would show that he gained at least, an ounce. On his first birthday, he weighed only fourteen pounds, five ounces. And now, he's almost two, and weighs eighteen pounds, which is less than Isabella weighed when she turned one. I'm not saying weight is everything. A lot of doctors scare mothers into thinking their baby isn't gaining fast enough, when in reality, what you really need to be concerned about is the weight to height ratio. If they are somewhere, anywhere, on the mysterious "chart" for their weight to height ratio, chances are, they're just fine. Bottom line, think for yourself and your child. Don't believe everything everyone else says. Get a second opinion. Evaluate family history. The first GI doctor we met with, sent me home with a piece of paper stating that I should give Isaac two, eight ounce bottles of formula a day. Um, that's really helpful. Thank you. Obviously we have a communication barrier BECAUSE I JUST SAID HE HAS A SEVERE ORAL AVERSION. Oh my. If a doctor treats you that way, cross them off of your list. If your child has multiple issues going on, trust me, you don't have time to deal with dumb people. 

Anyway, I thought of the feeding tube as a failure. And I definitely thought of giving him formula, a major sign of failure. But I had to let go of that, because his successful development was my greatest concern. Getting the feeding tube was really scary. We'd been through much worse surgeries with him, but for some reason, I couldn't wrap my head around the fact that he would come home with a foreign object sticking out of his stomach. When all was said and done, it wasn't so bad, and I quickly got the hang of the whole thing. In all honesty, using the tube is quite easy, and I feel blessed that since having the feeding tube, life has been fairly uneventful. Sure, we've had our mishaps where the medicine port pops open and a whole feeding, along with stomach contents end up in the bouncy seat. That's not fun. And at first I was self conscious about feeding him when we were out, but now I don't care. I actually invite questions and curiosity. I had no idea what a feeding tube was, until we had Isaac. I think this is a world that most people just don't know about. I still have to keep track of calories and ounces, but his feeding is consistent and I know that what is going in, is actually going in. And when I caught Walter mixing his milk with too much water, I freaked out, "What are you doing?! You have to pay attention to the measurements because it matters how many calories he gets!" 

What do we put through the tube? 

Organic Pedia Smart. This is delivered each month by the medical supply company, and is covered by insurance. About three times each week, he has Miralax mixed in with one feeding per day. If that isn't getting the poop going, he gets Miralax mixed with one ounce of water. I've found this is the best balance for maintaining solid poop, but not too solid, and not diarrhea. 

How many times each day does he have a tube feeding?

I strongly believe in nursing on demand. So I follow a similar approach to Isaac's tube feeding. Isaac is good at "telling" me when he's hungry. But we roughly follow an every three hours, feeding schedule.

What is the most challenging part of Isaac having the feeding tube?
I think Walter and I would both agree that making the decision to get the tube, was the hardest part. You never really think of a child not liking to eat, so it's all very contradictory to the norm. Pre-planning the amount of milk to take with us if we're going to be out for the day, and also the thought of, "what if something happens to the pump?" is all a bit stressful. The pump is the only way for my child to get food, so if something happens to that, we're screwed.

How has your family handled the feeding tube?
For the most part, everyone does really well with it. Anyone who is going to care for Isaac, has to know how to use the pump and hook him up for a feeding. Some people are more hesitant to learn and perform the whole process, but I assure you, it's easy enough for Isabella to do it and certainly doesn't take a genius. I have a couple college girls who watch the kids every once in a while and they are very comfortable with it.

What does Isabella think of the whole thing?
We're really honest with Isabella about everything regarding Isaac. She knows that he has a hard time eating, walking, talking, and other things that kids his age don't have trouble with. She often tells me that Isaac is a baby, and I have to remind her that he's not really a baby, he just looks and acts a lot younger than the other kids around his age in our group of friends. Before he had the tube placed, I showed her pictures of what it would look like and we talked extensively about how this would help Isaac grow. She did tell me that she's glad she's not a boy, so that she doesn't have a giant tube in her belly. Isaac's GI doctor got a kick out of that one. I assured her, not all boys have tubes in their bellies. 


What is the best part of Isaac having the feeding tube?
There are many good things about Isaac having the tube. He is getting bigger and stronger, he pulls to stand, cruises along furniture, learned to crawl, learned to roll over, and at times, sits up straighter. He has more energy during the day, and in general, is in a better mood. Does he sleep better? Sadly, no. But we've also learned that this is more due to the severe obstructive sleep apnea than potential hunger...which is what I spent months trying to convince the doctors of.

Can he take a bath? Go in a swimming pool?
Yes.

Does he eat any food by mouth?
No. But we're working on it. Obviously, we would like him to eat by mouth, eventually. Any medicine he takes also goes through the tube and then is flushed with water.

What kind of comments do you get from the "peanut gallery"?
The most annoying comment is, "you just need to find what he really likes to eat." Oh really? That ice cream you're eating right now, go ahead, try to give him some, see what happens, and you get to deal with the consequences. Same for you, with the chocolate frosting. You can walk him around and soothe him after you traumatize him with that evil chocolate.

I hope this helps explain tube feeding and the process parents experience when deciding to have a tube placed. I'm an open book, so if you think of a question that I haven't addressed, let me know!

Thanks for reading,
Sierra

tube feeding 101

This specific post, is mainly meant to inform anyone who is interested in learning about tube feedings (awareness is always good) and those whose children have or are getting a g-tube. If you're new here, and stumbled upon this blog while researching for your child's upcoming surgery, I'm so glad you found this site! I watched several You Tube videos on tube feedings and also stumbled across some family blogs before Isaac's surgery a couple weeks ago.

And for those who are new, a quick summary of what's up with Isaac: After months of going from doctor to doctor, we finally found out that he has a deletion on his ninth chromosome. As a result, this causes a wide spectrum of developmental delays and health problems. Isaac ultimately needed the g-tube because his oral aversion to feeding became so severe that each feeding was accompanied by tears, sometimes from both of us. His growth has also been extremely slow and as of a couple months ago he was the average weight of a six month old and the average length of a ten month old. He is now eighteen months old and almost weighs seventeen pounds, which is amazingly wonderful.

I was really scared before this surgery. I think mainly because he was coming home with something he didn't go into the hospital having. I was also worried and apprehensive about the care and maintenance of the tube and how as an active "toddler", he would tolerate the tube itself. Isaac happens to have a fairly intense personality and if he doesn't like something, he doesn't mind screaming for hours on end just to get his point across. So that's what I was anticipating. Thankfully, I can say that it has been a very easy adjustment, and honestly, I wish we'd opted for the surgery sooner.

For his feedings, Isaac sits in the high chair. Sometimes he watches a show, sometimes he plays with play doh or other random things. And sometimes, though not ideal, he scoots around the floor and I follow him around with the IV pole. Yep, I'm crazy.

This is what the pump looks like...it's all very self explanatory....

At this particular feeding he was watching Thomas and Friends, which is one of the most boring shows I've ever seen...

This is what the PEG tube looks like. In about seven weeks he'll get a mini button.

I tape it down just so that the extension doesn't bother him or pull on the tube site...

Administering Tylenol is super easy and no longer requires restraints (just kidding, we didn't really use restraints). Oh, and don't purchase red Tylenol, it's a bit disturbing and looks like blood.

Flushing the line is very important...don't worry, the red is just the leftover Tylenol. Your medical supply kit will come with syringes. They say you can use room temperature formula and water. I prefer to use lukewarm water and always heat his milk (aka formula, but I'm very sensitive to that word, more on that in another post). Cold water or formula can cause stomach cramping. Your "formula" should be delivered by your medical supply company, along with all of your IV bags.

Don't worry, it is completely normal for the tube to stick out one or two inches. Walter totally freaked out the other day when he saw it and refused to give Isaac a bath because he couldn't look at it. I'm also very good at cleaning the incision site on my own now. I decided Walter couldn't handle that either since he would sit there holding down Isaac's arms and I'd hear him taking deep breaths throughout the whole ordeal. Trust me, it's really not that bad.  

Pretty simple! And you can barely tell he has it when his shirt is down! Because Isaac scoots, I tuck the port just above his diaper, that way he doesn't scoot and pull the tube out. Also, make sure you pinch the tube just below the port, so that stomach contents don't spill out. It's happened to me, and it's really gross.

And because you probably need a laugh after all of that...

Isaac was really excited to see Kate, his physical therapist. He did a great job and was in a good mood!

Working on climbing...