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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Monday, May 23, 2016

Because of her feeding tube

There was a time in this girl's life when we wondered what the future held for her. We wondered if she would ever be healthy enough to live a normal life. If she would go through her whole childhood feeling as sick as she did during her first 18 months. How malnutrition would affect her development. Every now and then, I catch myself watching her in amazement. She has come so far and overcome so much! A lot of things are still not easy for her but she does them anyway. 
In my role with the Feeding Tube Awareness Foundation, I talk to parents all the time who are hesitant to go forward with tube feeding. They're afraid that using a feeding tube means they're giving up on their child, or that they're doing something permanent to their child if they consent to a G tube. I used to be that parent, and I wish I could help every other parent facing that decision to see that the most important thing is that their child is receiving adequate nutrition, and that for some kids, a feeding tube is the best way to accomplish that. A feeding tube is not the end of the world! For so many kids like mine, life BEGINS when they start getting the nutrition their bodies need! Watching her rake up hedge trimmings this weekend, I couldn't help but be in awe once again at the full and wonderful life she's living because of a simple little feeding tube.

Wednesday, February 10, 2016

FTAW 2016- Development: The Power of Tube Feeding

Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?

Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and property. As the needs in each tier are fulfilled, the individual continues to move up to the higher-order needs. If the most basic needs are not being met, it is impossible for the individual to work on higher-order needs. How does this translate over to a tube fed infant? Development. 

When a child is facing a medical crisis (or multiple medical crises), the focus MUST be on survival. At that point, keeping the child alive is the priority, and often that comes at the cost of other higher-order needs or skills. There are many children who are tube fed, not because of a feeding disorder or a problem with their digestive system, but out of necessity due to other medical problems. For example, children with congenital heart defects are often given feeding tubes, either temporarily or longer term, because eating consumes too many calories, they lack the strength & energy to eat enough to grow, they have a higher caloric need than they are able to take in orally, or they need additional calories to help them reach the weight they have to reach to have open heart surgery. Kids who are intubated tend to develop oral aversions that hinder their ability or desire to eat by mouth. Obviously, all of these interventions are critical to their survival, but often come at the cost of being able to eat and drink orally enough to sustain their own lives.

Looking back at Raya's experience as an infant, I can see where we had to sacrifice certain developmental needs for the greater good of keeping her body nourished. It wasn't as drastic for us as it is for many of our cardiac friends, but we still had to sacrifice certain things in the name of survival. I think the most obvious example is that when it was decided that she was at risk of primary and secondary aspiration, her GI doctor and I agreed that it was in her best interest to stop oral feeds completely until she had a swallow study done. Allowing her to continue drinking formula by mouth when we suspected that she was not swallowing safely could have resulted in life-threatening aspiration, so the decision was made for her safety, but with that decision came the cost of oral motor skills and the natural progression of feeding skill development. At the age that most infants are starting to eat solid foods, we stopped feeding her by mouth completely. That meant that not only was she not maintaining the skills of sucking and swallowing that she already had (as lacking as they may have been) but she was also not continuing on with the next set of skills that come with learning to eat solid food from a spoon. Survival in the form of preventing dangerous aspiration was necessary, but halted that development.

Somewhere around 14-16 months, Raya inched her way out of survival mode. The switch from a G tube to a GJ tube allowed her to keep enough calories and nutrition in to actually start growing and absorbing the fats and nutrients that she was struggling to absorb with the NG and G tubes. As the vomiting slowed and then stopped, she blossomed right before our eyes. It was an amazing transformation.

The difference was that tube feeding had allowed us to optimize her health, and that allowed her to move out of survival mode and start working her way up the hierarchy. When we were constantly having to put out fires with her medical needs, we did not have the luxury of focusing much of our time and energy into working on her developmental delays. Those things just had to fall to the bottom of the priority list while we tried to keep her medically stable. Once her body was no longer in a constant state of stress, she was able to start working on those areas of development where she was struggling. All of that was made possible because of tube feeding.

Now that she is older, the feeding tube still supports her development through nutrition, but there is one other important way that it supports her. The feeding tube takes the pressure off of her. I have come to the painful realization that my daughter does not have a normal relationship with food. I mean yeah, that's obvious, but in a very real, psychological way, she does not have the bond with food that typically developing children have. Eating requires not only a great deal of physical effort, but also a great deal of mental and emotional energy for her. When the demands that eating places on her are just too much for her, being able to rely on the tube to get her by relieves the pressure that she is under. Now that she's in kindergarten, there are a lot of demands on her limited attention span. The tube is allowing her to have a balance in still working toward being an oral eater, and falling back on the tube for support so that she can focus on what she's learning.

I know I've shared this video a lot, but I think it really illustrates what my ramblings are getting at. We started with a baby who was to busy trying to just survive, to ever attempt to overcome some of the developmental struggles she was facing. Heck, we didn't even RECOGNIZE a lot of what she was struggling with because we were so busy trying to keep her from puking her little guts out! Anyway, here's the video that still makes me cry every time I watch it.

This week is also Congenital Heart Defect Awareness Week! When I first started searching out other parents of tube fed kids online, it was the heart moms that I gravitated toward. There were so many awesome heart mom blogs, and so many of those kiddos had feeding tubes. Over the years, I have come to know and love so many CHD warriors and their warrior mamas, We ♥ tubies and we ♥ the ♥ kiddos!

Tuesday, February 9, 2016

FTAW 2016- Nutrition: The Power of Tube Feeding

Today's Topic:
Nutrition: The Power of Tube Feeding
There are long-term consequences to malnutrition. For some people, there wouldn't be life without tube feeding, but for others, they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren't able to eat enough on their own to get the nutrition they need.

Nutrition can be a touchy subject among tube feeding families. In the tube feeding world, I think many of us have different feelings toward nutrition in its various forms at different points in the tube feeding journey. Before Raya was even born, I planned on breastfeeding her just like I had done with her 3 older siblings. It wasn't that I had anything against formula, I just wanted to breastfeed. (and formula is 'spensive) One of the hardest things that happened in the beginning of all this was being told that my breast milk was literally harming my daughter and that I had to stop giving it to her. For a while, I kept pumping and freezing the milk and clung to the hope that we would be able to get her back on breast milk and I could go back to breastfeeding her. I did try giving her breast milk through her feeding tube a couple times. I did not go well. I had to accept that what I planned for her and for us was not going to happen, and I had to let go of that. It may seem silly and be difficult to understand, but I went through a kind of grieving process over the loss of, not only breastfeeding her, but also the loss of having control over how I nourished my child. I had never experienced anything like that before. 

The first couple of weeks after the tube went in, we played a guessing game of sorts as we tried to find a formula that she could keep down, that would help her gain weight, and that she would drink by mouth. Ultimately, we found out that when a baby is in dire straits and facing malnutrition, you sometimes have to do some bargaining and accept the lesser of evils. The first formula we tried was horrid. Even the name sounded unappetizing. Pregestimil. Blech. I did not blame her one little bit for refusing to drink it. I'm sure it tasted horrible. It smelled horrible going down, and it smelled horrible when it came back out. And it did come back out. And then we ended up with another unpleasant side effect: blood in the stool and constipation. At that point, we had to switch to something else. The next one was an elemental formula called Neocate, that had the proteins broken completely down into amino acids. That one was definitely better than the Pregestimil. At least when she vomited, it just smelled like French fries. She did drink some of her formula by mouth early on. She just couldn't drink enough to sustain herself. Trying to get her to drink her formula was exhausting. Keeping up a feeding regimen of every 3 hours, 8 times in a 24 hour period with a baby who had little to no desire to drink anything was hellish. I tried the best I could though. I set alarms on my phone to wake me up every 3 hours, and I woke her up to feed her like they told me to. I could only do that for so long before I just couldn't keep up anymore. We had to let the tube do more of the work for her because she just couldn't do it herself, and I couldn't make her.

At some point, I came to terms with formula. I was still sad that I had been robbed of being able to feed her the way I wanted to, but as I saw her start to turn a corner and gain weight again, I couldn't help but marvel at the fact that something existed that could replace breast milk. I remember looking at the can and thinking how amazing it was that science could create something that replicated the nutrition found in breast milk, and that it could be done in a way that would help children with mysterious medical conditions like Raya to still grow and thrive when they would have otherwise slowly starved. 

As time went on and Raya became more stable, we dabbled in baby food. That did not go well. Exhibit A:

During a hospital admission shortly before her first birthday, she was switched from Neocate Infant to Neocate Jr. According to the label on the can, Neocate Jr would be nutritionally complete for her for the rest of her childhood. Hmmm... I wasn't sure how I felt about that. I must have been very out of touch with the medical world because even though I knew of people who had feeding tubes, it was hard to wrap my head around the concept of a child growing up to adulthood solely on nutrition provided by powdered formula from a can. With that realization came another twinge of sadness at the idea that Raya could potentially be one of those children. 

I knew that we had no way of knowing exactly what the future held for Raya, and I knew that for the time being, formula was doing the trick. She was still a sick little girl and we didn't know why (and no, the formula was not making her sick), but with the help of the nutrition provided to her by the formula, she was still growing and progressing developmentally. Even so, I still felt like she was missing out on something because of the lack of food in her life. Completely apart from the actual experience of eating food, I felt like her body was missing out on the health benefits of having food. With the blessing of her wonderful GI doctor, we started doing small amounts of pureed food through her tube. I felt like if we ever wanted her body to be able to digest enough food to not need the feeding tube anymore, we should give it some practice, and that was a great way to see how her body handled foods that she wasn't quite ready to eat yet. 

As time went on and things calmed down a bit more for her, she did start to eat food. She even got to a point where she was consistently eating 200-300 calories a day for a while. (until she got a sinus infection and didn't take a bite of anything for a month, but that's a story for another day) However, with more food exposure came the realization that Raya had food allergies. In retrospect, it explained so many things. Even the exorcist vomiting the weekend before she was admitted to the hospital for the first time. We had been adding rice cereal to her milk, as directed by her GI doctor, and then 2 1/2 years later, we found out she is allergic to rice. It turned out she was allergic to pretty much everything she had decided she liked to eat. We had to start over from scratch, and with some difficult dietary restrictions. 

Ugh. Dietary restrictions. I get so frustrated by the combination of food allergies and intolerances in this household. There are only 2 of us who don't have any foods that have to be avoided for one reason or another. As I was walking through the grocery store last night, I caught myself thinking of a meal that sounded good that I wanted to make but then was suddenly yanked back to reality with the realization that I cannot feed that meal to at least 3 of us, and it can't be modified to accommodate the allergies. That thought was followed by a twinge of sadness and a wish that we could just have a one day pass from all of the food restrictions and have everybody eat the same things. What does all that have to do with nutrition? I suppose it just illustrates how difficult it can be to find "perfect" nutrition for a medically complex child. I don't love that my child subsists almost completely on formula, however I'm extremely grateful that it is POSSIBLE for her to grow and thrive and be healthy on 100% formula. I mean, LOOK at this girl!

This one didn't make the Christmas card.

But what else is there aside from traditional commercial formulas? FOOD! Yes, food. As in, regular old food, thrown in a high-powered commercial-grade blender, and pureed until it's smooth enough to flow through a little bitty G tube. For some, blenderized food is a fantastic option but for one reason or another, the actual preparation is not do-able. For those people, there are some relatively new and very exciting products on the market in the form of commercially prepared blenderized food. I know of two companies whose products are currently available and gaining more and more insurance coverage and distribution availability on a regular basis. One is Functional Formularies (makers of Liquid Hope and other products), and the other is Real Food Blends. I don't know quite as much about Liquid Hope because it will never be an option for Raya since it contains some ingredients she is allergic to, but I have heard from many who use it and love it. It was created with adults in mind, so it is more nutritionally appropriate for adults, but the company did just announce a pediatric product (which Raya is also allergic to). Real Food Blends was formulated with children in mind, and offers a variety of "meals". (and there's one Raya isn't allergic to. yay!)  Both companies are doing great work on behalf of those who want options other than traditional formula. 

I have seen a lot of heated debates in the online tube feeding community over the topic of nutrition. When the debates start, they often take a "mommy wars" tone. As parents, we are passionate about our children, and that often leads to a "my way is the best way" attitude. It makes me sad to see these debates, and also to see "formula shaming," because when it comes down to it, there is no one way to feed a child who is tube fed. According to the Feeding Tube Awareness Foundation, there are literally HUNDREDS of medical conditions that can lead to tube feeding. There cannot possibly be one single method that would encompass all of those conditions and meet the needs of every single one of the hundreds of thousands of people who are tube fed, just like there cannot possibly be one diet that meets the needs of all people who eat by mouth! When you think of it that way, it's a little absurd. Each of us must do what it takes to nourish our children. For some, formula is literally the only way to do that. For others, there are options either in place of or in addition to formula. ALL of these options are right, but not all of them are right for each individual. No one should ever be made to feel guilty about what they choose (or are forced to) feed their tube fed child. The important thing is that feeding tubes and formulas of all kinds allow those who rely on feeding tubes to have the nourishment they need. 

Monday, February 8, 2016

FTA Week 2016- Energy: The Power of Tube Feeding

Today's FTA Week topic is:

Energy: The Power of Tube Feeding
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or post before and after pictures to show how much tube feeding has improved you or your child's energy.

I've seen a lot of really incredible before and after pictures over the years that I've worked with the Feeding Tube Awareness Foundation. We've seen so many children who have struggled for months or even years to keep from losing weight that they can't afford to lose. They are skin and bones. Shadows of the children they used to be, and a far cry from their peers. Then they get feeding tubes and the life is restored to them. They gain weight. They grow. They run and play and do all the things they didn't have the energy to do before.

Our before and after pictures aren't quite like that, but they are incredible nonetheless. This is our before:
3 weeks old

4 weeks old, 7 lbs 8 oz and spitting up everything
The nightly routine of "do whatever it takes to get her comfortable 
When I think about Raya's "before," this is the picture that comes to mind. A pale, skinny, 8 pound 2 month old who cried for hours on end no matter what we did for her, spit up and projectile vomited no matter what we did for her, was starting to refuse to eat, and stopped gaining weight. I still remember laying her on a blanket on my bed and taking pictures of her after her 2 month well-check. At the time, all I saw was my baby. Now, I look at it and see a baby that needed help.
January 2010

I suppose this could be considered our "after."

Now we have a beautiful, vivacious 6 year old who is loving kindergarten, enjoys playing with her friends and her siblings, works hard in her therapies, pushes through her daily struggles with a {mostly} happy spirit, and adds a huge and unique energy to our family and home. Raya has a presence that cannot be ignored.

We can't fully appreciate the difference between before and after without looking at the "during" though. We went from a baby who was weak and becoming malnourished, to a baby who had the strength to meet most of her developmental milestones in a normal time frame because of the nutrition she was receiving through the tube.

She learned to sit up:

She learned to crawl:
Trying to crawl her NG tube out of her nose on the day of her G tube surgery
She learned to pull herself to stand:

She learned to walk:

She learned to climb on playground equipment:

She learned how to climb out of her crib:

She learned to jump:

She started preschool:

She learned to ride a tricycle:

She learned how to run:

She learned to swim (well, we're still working on that...):

And she started kindergarten:

And NONE of that would have been possible without the feeding tube! 

Sunday, February 7, 2016

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, and she was the first to lose weight instead of gaining it, AFTER we had been trying all the tricks and remedies that we could come up with to try. She was also the first to ever vomit to the point of passing out. The first to start refusing to eat. I mean, what infant refuses to eat?! Isn't eating an instinct?? Yes, but so is self-protection. For my sweet baby, like so many others, eating became too painful. Her instincts told her to stop. She found a balance between eating to relieve the gnawing hunger in her stomach, and stopping to keep the reflux and retching at a minimum. She was pretty smart.

This is where the tube entered the picture. Clever as she was, we could not trick her into eating enough to grow when eating made her feel sick, and her throat hurt from acid reflux and vomiting. She reached the point where she was no longer taking in (and KEEPING in) enough calories to sustain her life, even with all of the less-invasive things we were trying. (and believe me, we tried a lot of things)

There comes a point where the damaging effects of malnutrition become a greater risk to the well-being of the child than the risks of tube feeding.

We reached that point on January 20, 2010. We were 2 days into our first hospital admission, and nothing had changed since we arrived at the ER 2 nights before. Weighing in at just over 8 pounds at 10 weeks old, she was refusing to drink anything by mouth at all. We had no choice, and so we did what needed to be done to save her life. It worked.

One aspect of tube feeding that I think is widely misunderstood by those who are on the outside looking in is that for many kids, the point at which the tube goes in is often not the peak of the child's medical "crisis", for lack of better word. On the outside, getting to the point of needing a feeding tube seems like the worst of the worst. It seems like the lowest point. The crisis moment. And yes, often it is a crisis moment, but it may not be THE crisis moment. Tube feeding often prevents a child who is heading toward a health crisis from actually having one. For many kids, the feeding tube is what sustains life while their parents and doctors try to find what is at the root of the problem. Vomiting is a symptom. Weight loss is a symptom. Food refusal is a symptom. Feeding tubes, medications, specialized formulas, herbal remedies, and holistic treatments are all ways to help alleviate those symptoms while the team is in search of a diagnosis that may or may not lead to relief of the need for the feeding tube, but there is almost always something else going on. There was so much more happening inside Raya's little body that we could not even begin to figure out until we started tube feeding her.

From the outside looking in, it may seem that getting a feeding tube is when the child hits rock bottom, but it's actually not. For many kids, including Raya, the feeding tube keeps them from dying when they DO hit rock bottom. It preserves their strength to fight whatever illnesses and ailments they are fighting. It allows them to get the nutrients they need so that their brains can continue developing. It allows them a chance to meet developmental milestones. It allows kids who cannot or will not eat to still thrive.

Now here we are, 6 years later and still relying on the tube for 100% of Raya's nutrition and medications. I know it is often difficult for people who meet Raya to understand why she still needs a feeding tube. I hear a lot of "She seems so healthy!" and "She doesn't look like there's anything wrong with her." And I know anyone who spends more than a couple minutes with her will question how a child with her energy level can possibly have medical problems.

She CAN eat. She does eat SOME food, but she has heavy dietary restrictions due to food allergies and difficulty digesting certain foods, but mostly it boils down to the fact that eating is just not her favorite thing. She feels about the same way about eating that she feels about coloring. She'll color if someone tells her it's time to color, but she doesn't usually think of it on her own. Sometimes she finds a coloring page that she really likes and she'll color the whole thing, but most of the time she colors a little bit of it and then she gets bored with it and she's done. Coloring takes a lot of effort and she doesn't get enough enjoyment out of it for the payoff to outweigh the effort. The same goes for eating. The biggest difference between how she feels about coloring and how she feels about eating is that eating and digesting food is often physically uncomfortable for her. She has a chronic pain condition in her digestive tract that makes the presence of food uncomfortable and often painful. She still has reflux. She has a difficult combination of food allergies. She has a very short attention span. She has a difficult time maintaining a healthy growth curve on food calories vs. elemental formula calories.

There are still unanswered questions, and we do still hope for the day when Raya won't depend on a feeding tube anymore. For now, we are just happy to have her alive and thriving, and we owe it all to her feeding tube!

For more about Feeding Tube Awareness Week, check out the official Feeding Tube Awareness Week website, and follow the Feeding Tube Awareness Foundation on Facebook

Sunday, November 8, 2015

Still here, just busy

Halloween 2015
Izzy from Jake and the Neverland Pirates

October came and went and I literally did not have time to document any of it the way I would have liked to. There have been many times in the last {almost} 6 years where I felt like I was impossibly busy. I kind of was, but I have learned in the last 3 months what busy really is, and particularly the last month. More than once, we've broken and tied our old records for the number of medical appointments in one day and in one week. Not something I'd recommend trying. I've had to let things go that made me really sad to have to let go, like attending some of my older kids' school events. So much of my time and energy has been demanded by our new "adventure" that I have had to make a lot of sacrifices, and so have Donny and the kids. The things I've still been able to do have not been up to the standard I'd like them to be at. For lack of better term, everything I've done for the last month (or really 3) has been pretty half-assed because that's all the ass I could give. Ha ha. It is all for good reason and we are happy/grateful to be doing what we're doing, but it has been hard. Really, one the hardest things we've ever done in many ways. We just finished the 30 hours of training we've had to take over the last 6 weeks, and it feels great to have accomplished that, but also to not have the homework that went along with it and to have our Saturdays back. 

There are some updates to share. I don't remember if I shared it before or not, but Raya was formally diagnosed with ADHD, combined presentation type. (or something like that) I thought I knew what ADHD was, and I kind of did, but after having it really explained to me, now I know what it actually looks like. The more her doctor explained symptoms to me, the more it all made sense. We have had very few times in Raya's life where we were given a diagnosis that explained what we were seeing and gave us a real "aha moment," but this was a huge one for me. I have never wished any diagnosis on my darling girl, but like I've said before, when you see so many red flags and you KNOW there is a problem, it is a huge relief when someone says to you, "Yes, we are seeing what you are seeing. This is what it's called, and this is how we try to help her cope with it." We are now working on sorting out our plan moving forward, and will be having an IEP meeting soon to incorporate accommodations into her IEP for the ADHD. I'm feeling optimistic that doing that will help reduce the stress that kindergarten is putting both of us under. The good news is that Raya still LOVES kindergarten even though it has been challenging for her so far.

The next thing to update on is really a non-update. We are waiting on the results of our parental genetic testing to see if either of us has the same gene mutation that was found in Raya. It's a gene that seems to have a connection to gastroparesis. I'm still not convinced that parental testing is going to give us a clear answer as to whether or not her gastroparesis can be attributed to that gene, but it will at least be interesting to see if either of us has the same mutation. 

We FINALLY got Raya's orthotics. They were ordered at the beginning of August but apparently the person who was working on insurance auth no longer works at the orthotist's office, so they completely dropped the ball, as did the chick I talked to on the phone about 3 weeks ago who told me she'd look at Raya's file and call me right back but never did. They felt so bad about how long it took that they overnight mailed them to us so that we'd have them in time for our last appointment with her PT before our PT auth runs out. Oh, yeah, we FINALLY got her support coordinator to put in the auth for PT. That was another whole circus. Raya turns 6 in a few days, and because the state is perpetually in a budget crisis, they are booting out most of the kids who turn 6 unless the parents can provide enough documentation to convince the powers that be that their child still meets eligibility requirements. It is maddening. If she didn't still need the services, we wouldn't be doing them. I wouldn't be spending hours of my time every week for the last {almost} 6 years going to therapies 2-3 times a week and trying to keep up with 3 home therapy programs. I wouldn't cry tears of relief when it's time for her respite provider to come over. It's just ridiculous that they can make snap judgments (and yes, I have documentation that it was a snap judgment based on 3 year old information) that cost a child the resources that are helping her progress toward reaching her full potential. And yes, if we're being transparent, it is very scary to think of losing her secondary medical insurance. A big reason why I've been so busy is that I've been making follow-up appointments with everybody that can possibly help me provide documentation that the state needs, and also trying to squeeze in everything I possibly can before she turns 6 just in case she does lose everything. I have been beyond tired these past 3 months. I have felt physical exhaustion that I haven't felt in years, and emotional & mental exhaustion that I haven't felt since Raya was a baby and things were scary and uncertain. So many weeks, I've caught myself starting to think about canceling a therapy appointment, but then I've reminded myself that these could be her last ones, so we've gone anyway. I need to know that I've done everything I can for her, and right now it means wearing myself out in the process of taking her everywhere she needs to go in addition to all of the new roles and responsibilities I've taken on since August. 

We have a meeting this week where we may or may not get authorization to continue therapies, so I'm praying that we are able to continue. I've given the state the documentation I got, and we're praying that it's enough. In the mean time, I'm trying to keep myself calm about it all and have faith that things will work out in Raya's best interest.

Sunday, October 4, 2015

Sleep study results

Normal. Gosh I hate that word. Raya's sleep study came back normal. She did have some periodic limb movements that woke her up, but not enough to fall into the range of periodic limb movement disorder. She also had some episodes of obstructive sleep apnea, but not enough to warrant CPAP. (I'm okay with that because getting her to sleep with a CPAP machine would not be fun.) She also snored all the way through it but not bad enough for anybody to think there's anything to address there either. Her sleep efficiency score was 94% (whatever the heck that means) so basically according to her sleep study, she's fine. UGH. Except for the part where she can't fall asleep without medication, and can't sleep through the night, and sometimes can't go back to sleep when she wakes up in the night. Like Wednesday night when I had 2 little girls wake up at about midnight and neither of them would go back to sleep until 3am (Raya) and goodness knows when Piper fell back to sleep. So yeah, not much helpful information came from the sleep study other than we've done it now and ruled out more stuff and found that the way things are right now might be as good as it gets.

In other news, we got back a stack of lab results from the neuro. There were some interesting things there, most of which I am not sure what to make of. One interesting and somewhat concerning find was that she did not develop antibodies in response to her pneumococcal vaccines. She got all the doses at the right times, but she only developed a fraction of the antibodies that she's supposed to have, so we need to follow up with immunology about that. It's possible that she just got a bad batch of vaccine (all 3 times???) but it's also possible that there's a problem with her immune system.

She had an endoscopy on Tuesday last week. Bless her heart, she handled it like a pro. These things are so much easier with her now that she is old enough and developmentally mature enough for me to explain them to her. It has been amazing to watch her develop a relationship with her GI doctor too and to have her doctor be able to tell her, "I need to look in your throat and stomach to see if we can figure out why you're having trouble swallowing," and for Raya to trust her enough to be okay with that. It also helped to not have it done at the main hospital because she has a lot more anxiety there than she does at the other location. She knows they won't poke her until she's already asleep, and she was pretty excited about the socks they gave her so she was in a very cooperative mood. We walked back to the endoscopy suite and she climbed up onto the table by herself, laid down, and helped hold the mask on her face. She was amazing and I was so proud of her. She gets emergence delirium coming out of anesthesia so the anesthesiologist gave her a good dose of something to help her sleep past the anesthesia drugs. It worked great but then she was mad when we got home and she found out she had slept through getting to drink the apple juice she had been promised.

Everything looked good in her throat except that the GI doctor said the scope made the tissue bleed more easily than it should have. She took biopsies and we will see what shows up. Of course I don't want anything to be wrong, but when there are obvious signs of a problem and we know there IS something wrong, it would be nice to be able to identify it. We should know in the next few days if anything was abnormal. They also did more labs that had been ordered by GI, allergy, and neuro. Poor girl woke up with needle pokes in several places because even with her well hydrated and under anesthesia, they couldn't get the IV in and couldn't get a good vein for labs without a few pokes.

The kids are off on fall break. For the most part, it's been fine but it has been so stinkin' hot that I haven't been able to send them outside to play much so it's just like being back on summer break. We are cooped up inside and it gets old really fast. Plus we've had so many appointments that we haven't had time to do anything fun. This week will be busy too but the weather is supposed to be much nicer so hopefully we'll get outside more. I love fall and I love October and I'm SOOOO glad that it's October now because that means the weather is finally going to cool down and all of the fun holidays are coming.

Wednesday, September 16, 2015

August/September Update

My lack of posting lately is a direct reflection of how much of my life is consumed with taking care of children (and their various needs) in one capacity or another. I am certainly not complaining about that. If there is anything that I have gained in the past 6 weeks, it is a deep (or deeper) gratitude for the privilege of having and raising my children, and being able to make decisions about how to take care of them and raise them without having to ask permission from multiple other parties. It's hard to comprehend just what a privilege that is until you see that privilege taken away from someone you know. Being involved in the capacity that we are involved in has been an eye opening experience in many ways and I can't believe how frustrating it all is. We are being kept in the dark about so much, but yet so much is being expected and asked of us. We are grateful to be able to help in an incredibly difficult situation, but this is so hard. Vagueness is one of my biggest pet peeves but we don't have a choice, so vagueness is the best I can do. Today has been exhausting in every way, and I know it is by the grace of God that I am somehow managing to keep my head above water with all of the appointments on our calendar right now.

I do have an update about the genetic labs. FINALLY. It was maddening being kept waiting as long as we were kept waiting for those results, and then to have the doctor get all snippy with me when I finally got in touch with him was just too much for me. As I had predicted, the results that were mysteriously dangled in front of us for over a month were another one of those, "Well, we found this abnormality but we don't know if it's significant or not." Raya has a mutation in a gene called the PNKD gene. PNKD stands for paroxysmal nonkinesigenic dyskinesia, which is a movement disorder that causes episodes that look like seizures. Raya has never had any episodes like that, but the lab has collected data showing that a lot of people with the same PKND gene anomaly Raya has also have gastroparesis, so there may be some link there. The next step is going to be doing parental testing. This is where I get frustrated. They tell us that if either of us has the same mutation, it means Raya's is not significant. I don't understand that. They say it's because neither of us has the same symptoms as Raya. The reason that frustrates me is that I have a family member on my side who has gastroparesis and visceral hyperalgesia like Raya, and another family member who is strongly suspected of actually having PKND. I have never had symptoms to the severity of Raya's, but I have had some GI issues that are similar, as have all of our girls. To me, that seems to suggest that there is something familial there but what do I know, right? For now, at least we have gotten the results and aren't being held in suspense anymore. We got the parental testing kits in the mail so now we need to spit in the test tubes and send them back and wait to see what they say.

The entire month of August and into September has been a marathon of appointments. Mostly for Raya. She saw her GI doctor a couple weeks ago for the first time in about 4 months. I think it was one of the longest stretches we've gone without seeing her. Unfortunately, Raya has had some troubling symptoms recently and since it's been over 2 1/2 years since her last endoscopy, her GI decided it's time to do another one. She has been having trouble swallowing, and she clears her throat constantly. As much as I don't want another diagnosis added to her list, when there are symptoms like increased dysphagia and constant throat clearing going on, I really hope she finds something so that we can figure out how to help her. I know she'll be looking for eosinophils and of course I don't want Raya to have eosinophilic esophagitis, but we have been questioning for 5 years if she has it or not and if she does, it would sure be nice to know so we could actually treat it. I'm tired of guessing, and experimenting with treatments. She has been doing so well with the variety of foods she's been eating that it makes me sad to think that we might have to take any of them away, but if it would help her feel better and be able to swallow better, then I just want to know if that's what we need to do.

We saw the allergist today and he agreed that an EGD is a good idea based on her current symptoms. We talked about a few more foods to add into her diet but agreed that it would be best to do IgE labs for those foods while she's under for the EGD and then start trialing them afterward. I don't expect anything abnormal from the IgE labs because even the foods we know she's allergic to have never come up positive on the bloodwork but we may as well try it.

Last week, Raya's name finally came up on the waiting list for the child psychologist we've been waiting to see. I put her name on the waiting list in late December or early January, so it's been 9 months of waiting to see this lady. Had I not been so overwhelmed trying to keep up with everything else, I would have tried to find someone else, but it got put on the back burner so we just waited. Our GI doctor recommended her because she's worked with a lot of chronic GI kids and she felt like it would be a good fit for Raya. After having our initial evaluation with her, I feel good about working with her and I think she will be able to give us some good tools for helping Raya. She feels that what we are dealing with may be ADHD. The plan is to start by coming up with a behavior plan and see what else we find out from all the testing we have going on. Chronic GI issues and sleep difficulties definitely play a role in the problems we are having, and I know kindergarten has been a hard adjustment. She is doing great at school, both academically and behaviorally. Her teacher even sent home a really nice note last week about how sweet and funny Raya is and how much she loves having her in class. The problem is that Raya is really good at holding herself together while she's at school, and then she falls apart when she gets home. Even with the continued use of her sleep medication, she is waking up really tired in the mornings and she just hasn't been quite herself. We are scrambling to do as much as we can before her 6th birthday, because we were informed over the summer that she is probably going to lose her DDD eligibility (meaning no more therapies) and her secondary insurance through the state, which would mean not only losing the insurance coverage but also the respite and habilitation hours. We will be appealing the denial and trying to reapply for the insurance part at the very least, but in the mean time, we're trying to take full advantage of everything she does have while she has it.

There's so much more going on that I haven't even scratched the surface, but much of it is not mine to tell other than to say that I am exhausted and overwhelmed right now. I just counted, and in the last 6 weeks, we have had 29 medical appointments. 'Nuff said. I'm looking forward to seeing neuro next week to go over all the tests she ordered, and especially the sleep study.

Sunday, August 23, 2015

Still hanging...

I've been playing phone tag with the genetic counselor. Well, mostly it's been me leaving him messages and then the one time he called me back, my phone must have been in a dead zone because it didn't ring, and then suddenly had a voice mail with no missed call. And of course it was at 4pm on Friday so do you think the guy answered his phone when I called him back? Of course not. His voice mail said, "There are some results I want to discuss with you." which I assume and hope means that there is more to the results than "normal" and that it's not another "well, we found XYZ but we don't know the significance of that, if any" because I'm so over those.

My mission in life this week (aside from taking little girls to appointments) has been to purge all of the excess clothing out of our house. I'm pretty sure that clothing is reproducing in dark corners of our house because that's the only way I can fathom how we have the amount of clothing we have. I went through some boxes of clothes yesterday and pulled out the things that will fit the little girls now, and bagged up a LOT of clothes that we hauled off to a clothing drive. It felt pretty awesome to let all of that go.

Letting go has been a bit of a theme for me this week. Letting go of material things is the obvious, but there has been a lot of figurative letting go too. Somehow, the literal letting go of things seems to smooth the rough edges of the figurative letting go. Letting go of the stuff that clutters up our space is more difficult than it seems like it should be. Nobody likes to be surrounded by clutter, yet so many people are. Everyone has their various reasons for the clutter. I don't have time to take care of it. I'm not sure what to do with all of the stuff. I don't have room to put it away so it sits in a pile instead. I'm saving it for _________ (fill in the blank). It was given to me by someone I love for a special occasion and I can't bear to part with it. Whatever the reason, there has to be a tipping point when the clutter becomes more suffocating than the reason for hanging onto it.

Clearing out the clutter is both exhausting and liberating. Letting go of the piles of stuff and taking back your space is empowering. The same goes for the figurative letting go. The figurative "clutter" of life comes in many forms and is burdensome. Taking on too many emotional and psychological burdens wears heavily on mental and emotional health. Letting go of figurative clutter is every bit as difficult as decluttering personal space. Maybe more so, since it can be hard to even recognize the figurative clutter in our lives. Sometimes we don't realize how burdensome a relationship, thought, idea, or habit is until we remove it from our lives and feel lighter and freer.

The week ahead of us, much like the last 3, will be busy. It will be packed full of appointments (we have 5 medical and a couple of other appointments scheduled) and all the usual craziness as well, like piano lessons, early release on Wednesday, scouts, youth activity, a home study, and prepping for one of the kids' birthdays this weekend. I simply cannot juggle all of those things AND all the other things I need and want to get done, so some of it will just have to be let go. It's easier said than done, but no matter how Wonder Woman I think I am, I can't do it all and this week, that will just have to be okay.

Saturday, August 8, 2015

Sure, go ahead and leave me hanging

Words escape me to describe how this week has been. The usual choices of "insanely busy" and "exhausting" and whatever else I would normally say just don't do it justice. I won't even try to explain it all but there are some important highlights.

1. We saw our former neurologist, who left the hospital-affiliated practice a couple years ago. I decided it was time to follow her, because I like the way she thinks, and I like the approach she takes with kids like Raya. The results of that appointment are that we are finally having the sleep study done that the hospital neuro clinic was supposed to have done a year ago and never called me back to schedule, even after I left multiple messages. We are also having a huge list of labs done to check things we haven't looked at in a couple years, and several things we've never looked at at all. We also have a referral to a naturopath in the area who may be able to help us look at things in a different way. We will be following up with neuro in 2 months, and hopefully by then I will have actually found time to take Raya to the lab to do the blood draw.

2. The most recent genetic test results came in. Not because the genetics office is on top of things, but because I knew the results should have been ready by now so I started calling them until they acquired a copy from the lab. (These tests were some that were ordered when Raya was a baby, and I only found out in February of this year that they were never actually done back then when they were originally ordered.) The genetics counselor called me back Tuesday to tell me that they had gotten a copy of the results and that it looks like there are some things there that may explain some of Raya's symptoms. Then of course, he followed that with, "But I can't give you any specifics until the doctor is able to review the results. We'll call you back when he has gone over them." And now it's Saturday, and I didn't hear anything back. But don't worry, Mr. Genetic Counselor and Geneticist, it's not like I get butterflies in my stomach when I think about the possibility that after 5 1/2 years, we might actually have a name for whatever underlying diagnosis has eluded us thus far. So yeah, just leave me hanging for however long it tickles your fancy. I don't mind.

3. We had a consultation with the orthotic specialist this week. It probably should have happened a couple years ago but it was one of those things that took a back burner to the digestive stuff and unless you know what you're looking for, most people wouldn't recognize the problems with her gait. The orthotist confirmed that I'm not imagining things that aren't there and that she does need orthotics and physical therapy for her gait. Pending insurance approval, we'll be able to pick up her orthotics and then she can start learning to walk in them. She has made incredible progress in regards to her cerebral palsy, but there are still things that we need to work on correcting in order to prevent long term dysfunction. Orthotics and PT will help.

There were more mundane things like our garage freezer thawing out overnight, forcing me to clean it and bake 6 dozen rolls yesterday so I didn't have to throw away the thawed out dough. And Donny's car getting backed into by one of his friends. And the child who woke me up puking her guts out in the bathroom at 4 this morning. And holy hanna has it been hot this week! When I was picking Raya up from school on Wednesday at 9:40 in the morning, it was already 109 degrees. When I picked Ashtyn up from school at 4:00, it was 116. Oh, and we were asked to speak in church tomorrow and I've been so busy all week that I haven't written my talk yet, and I'm so tired now that I can't stay awake, let alone form enough coherent sentences to write something worthy of sharing over the pulpit. I hope a lot of people are out of town or sleep past their alarms. I had a dream a couple nights ago that I was sitting in church and realized I had forgotten to write my talk so I had to wing it. It was an unpleasant dream.

Aaaaanywhoo, we have had a difficult, exhausting, trying, emotionally charged, busy busy busy week but I have felt over and over again that God is making me equal to my tasks and we will survive. We have had the pleasure of a couple nice thunderstorms this week, which I always feel are a gift from God in the form of a break from the REALLY hot weather.
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