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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, April 20, 2015

Juggling cats

I feel like I'm juggling cats right now. Well, I suppose I can't really say that because I've never actually juggled cats so I don't know for SURE that this is what it feels like, but ugh, it's got to be close to it. So much to do, and so little time to do it all! I've hit my end-of-the-school-year wall about 3 weeks early this year and we are officially to the drag our butts across the finish line phase. Throw in the most awful allergy season in the entire 13.5 years I've lived in this state and a few germs and we're just a hot mess around here. I have a bunch of projects with deadlines all of a sudden and our poor respite provider keeps getting sick and having to cancel, which makes it hard for me to do anything during the day when Raya is home. The school health aide at my big kids' school has had me on speed dial lately for one reason or another. After picking one kid up early from school and then a trip to the allergy & asthma doctor today, it turns out that my dear boy, who had been officially discharged as an asthma patient last June, has not outgrown his asthma after all. He scored a whopping 57% on his lung function test and we left with 3 new prescriptions and a signed asthma action plan to have on file at school, just in time for his field trip on Wednesday to an outdoor location 2 hours away. (really, I am grateful that we got it in time for the field trip, just bummed that it's gotten this bad) On the bright side, it sounds like he will qualify for an asthma study and that would cover his medications, so yay for that.

I know this sounds like complaining but really it's just my way of saying, Wow, there is a lot going on right now. Being a mom is my "job" and it's the only job I ever really wanted. I am really grateful that I am able to do all of this and be there for my kids.

Thursday, April 16, 2015

It shouldn't be this hard.

I had a meeting yesterday. It was not an IEP meeting, but rather a meeting to discuss the re-evaluation we will be doing to determine whether or not she will continue to qualify for an IEP going into kindergarten. What I did not know was that we would also be discussing concerns and needs for kindergarten, nor did I expect to hear the phrase "We don't have the staff for that" as many times as I did. I expected to have mountains to climb but was not expecting to be confronted with them yesterday and was not really prepared for those discussions. Now that I know the areas that I will meet resistance on, I can at least start preparing my case and finding out what rights & protections we have for those things. I'm telling myself that's a good thing. I am also hoping and praying that it will not be as difficult as I am now afraid it's going to be to get what she needs (and we are not asking for anything unreasonable), and my prayers will be more specific now that I know what we're up against.

I know I'm being vague but it would not be in anyone's best interest to discuss details, especially when we are in the very beginning of the process. Here's what I will say though. It should not be this difficult or stressful to send a 5 year old child to kindergarten and know that they will be safe and adequately and appropriately cared for at school. I should not have a gnawing pain in the pit of my stomach when I so much as think about the concerns we have for keeping Raya healthy and safe in school, and I should not have to feel like the burden of proving not only what her needs are but how significantly they may impact her education is upon me. I could go on, but for now I'm going to stop and work on getting my ducks in a row before the reevaluation testing next week.

Friday, April 10, 2015

Living in the Woods

Parenting is hard. There is so much to worry about. Throw in complex medical conditions, and what is considered "hard" about parenting changes. The things that are at the forefront of the mind are very different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they are real and valid. For parents dealing with medically complex children, those typical worries still exist but they have to take a back burner to more basic, primal needs that keep the child alive.

The term "medically complex" is a vague, umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions are considered to fall under the umbrella of medically complex, but chances are that if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many medically complex children have diagnoses of genetic conditions, diseases of major organs, and neurological disorders, and many have a collection of symptoms with no diagnosis.

Parenting a medically complex child means not only providing the usual care and nurturing, but also becoming an expert on whatever medical conditions affect the child. It means learning how to operate medical equipment, perform medical procedures, use the various tubes and devices attached to the child, and acquire an entire vocabulary of medical terminology. It also means preparing for any of the potential emergency situations that could arise and knowing that danger of these emergencies happening always lurks in life's shadows.

Parenting a child with any type of special needs changes the way the mind works. The blinders come off and nothing can ever be looked at the same way. Acknowledging the darker side of life does not make parents of medically complex kids pessimists, it just means they are doing their best to cope with the often ugly and terrifying realities that accompany their children's medical conditions. From an outsider's perspective, it can be difficult to understand that no matter how good a medically complex child looks, he or she may not ever really be "out of the woods," so to speak. Medications can keep symptoms at bay and special diets can help control the damaging effects of disease. Feeding tubes can ensure adequate nutrition and aid in overall health. Insulin pumps can keep blood sugars stable. Congenital conditions can be repaired surgically. All of the medical interventions that parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment and wreak havoc on the most stable-looking medically complex child. In the blink of an eye, things can go from calm to complete disaster.

This is why we are stressed out and we can't ever completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting, and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we're waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we are out of the proverbial woods because mentally, we can't ever really leave the woods. It's all we've known since our medically complex children entered our lives and we can't erase the memories we've made there. We see terrifying and devastating things happen to the friends we've met while living in the woods, and we understand that those things could happen to us too. Next time, it could be us. If we seem a little overbearing, overprotective, or paranoid, know that it is for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we have dedicated our lives to caring for our children but what that requires of us is very different. Living in the woods is not what we planned for our children and certainly not what we wanted for them. Since it is beyond our power to change that, all we can do is do our best to enjoy the scenery, keep living, and create a safe and happy life for them, even if it is "in the woods."

This post was featured on The Mighty

Thursday, April 2, 2015

Autism Awareness Day: Some thoughts on acceptance

I need to preface this by saying that Raya does not have autism, and that my purpose is not to somehow cheapen or lessen the struggles that families of children with autism go through. Even though autism is not on Raya's diagnosis list, she does struggle with many of the issues that children with autism struggle with. Since today is about awareness and acceptance, I wanted to share some thoughts and feelings that I have had recently about acceptance of children with special needs of any kind.

A few weeks ago, one of the kids had a friend over to play after school. Something small but significant happened that day. It hurt my heart and I have been trying since then to sort out my feelings and put them into words, but I haven't been able to. Last week, another small but significant thing happened that put my world back into balance, and I think that today is the perfect day to talk about both experiences.

Our kids are blessed with great friends who live within walking distance of our house, so during the months of the year when the weather is pleasant, there is a constant flow of children in and out of our front door. This is a common occurrence at our house, and I love it. On this particular day, the kids had gotten out of school early and the weather was gorgeous, so it was a perfect day for playing with friends. The little girl that came over is as sweet and adorable as can be. She is always polite and well-mannered at our house and I enjoy having her here. While the kids were playing, I was in my office editing pictures from a photo session I had done that week. Since the office is next to the front door, I could hear everything the kids were saying as they went in and out. As I sat adjusting the photos I had taken, I overheard this small exchange between my daughter and her friend:

daughter: Should we go in the back yard?
friend: No, let's go in the front yard. But not with Raya. I don't like Raya. Do you like her?
daughter: {pause} No. 
friend: She's so loud and she never leaves us alone.
daughter: Yeah.

Cue the breaking of my heart. Let me be clear that I am not sharing this to in any way shame my daughter or her friend. While I don't like that they had this conversation, I do remember what it was like to be their age and I understand that they are just acting their age. They had this conversation out of earshot of Raya, and they didn't actually say or do anything mean directly to her. 

I sat there dumbfounded for a minute or two, not really sure what to do. It happened quickly, and they were off to find their next adventure before I had a chance to do anything anyway. Hearing the little girl say that she didn't like Raya was the first moment that I realized people might actually feel that way about her. I think every mother has those moments where she is made painfully aware of the fact that not everyone sees her child with the same unconditionally loving eyes that she does. Goodness knows I was aware of that well before Raya was even born. In that moment, my blinders came off and I realized that this is just the beginning. This was just one friend of one sibling. What about when kindergarten starts in the fall? (well, technically the middle of the blazing hot summer on July 27th) What are the other kids going to think when she has to leave class 3 or 4 times a day to go to the nurse's office? What if somebody notices her pull-ups? What if, heaven forbid, she has a poop accident in her pull-up and the other kids smell it and make fun of her? What if she feels left out when the other kids eat each other's birthday treats and she can't? What if her dysmotility flares up and she throws up in her classroom in front of everybody?

All of those are valid concerns, but as I've pondered it, I realized that what concerned me most was not what the other kids think of her or even what they say to her. She has a pretty good track record of not caring what other kids think or say. {Remember the time someone at preschool mentioned being able to see her pull-up and she told him, "Well, if you don't like it then don't look at it!"} The reality is that yes, somebody is bound to say something that will hurt her feelings. That's normal. It stinks, but it's part of life. What I realized was bothering me more than what other kids might think was this:  
What if she starts to notice the ways she is different from her friends and it makes her feel bad about herself?

That's an inevitable part of life, right? I get that, but I was hoping we would have more time. And maybe we do. Maybe kindergarten won't be the year that somebody makes fun of her for still wearing pull-ups, but maybe it will. And maybe it won't bother her, but maybe it will. Maybe her classmates won't make fun of her if she has a #2 accident in her pull-up and they can smell it (and believe me, they will smell it), but maybe they will. Maybe her classmates won't notice that she has to have an aide sit with her during lunch to make sure she eats & drinks without choking on her food, but maybe it will. Maybe her classmates won't mind that she sometimes forgets about personal space, but maybe they will. Maybe they won't Maybe they won't care that her tube sometimes leaks smelly stomach fluid on her clothes, but maybe they will. Maybe kindergarten will be the year when she gains better control over her bowels and bladder and starts making it to the bathroom on time, but maybe it won't. Maybe it won't be the year that her teacher finds it easier to ignore her than work through her difficulties to reach her. Maybe this won't be the year that the parents of her classmates get upset that they can't bring treats with peanuts or tree nuts to class because of her. Or request to have their child moved to a different classroom where there is no nut allergy. Maybe the other parents won't complain in front of their kids about having to accommodate another child's inconvenient food allergies, but maybe they will, and maybe the kids will tell her what their parents said about her. Maybe none of those things will happen this year, and if they do, maybe they won't affect her. But maybe it will, and I don't know if I'm ready for that.

Last week, we had another experience with another neighborhood friend that helped turn things around for me and restore my hope that school will be a socially positive experience for Raya. This time it was my son's friend that comes over after school fairly often. This particular friend is probably the one that Raya gets the most excited about. Whenever he comes over, she can't contain herself. She hugs him, talks to him, and follows him around. She adores him, and as he has spent time at our house, I have come to adore him too. He is so kind to her and so patient with her. If she bothers him, he doesn't let on. He and Cole never complain about her tagging along with them when they play in the landscaped area in front of our house. He doesn't act like he's annoyed by his friend's pesky little sister, but rather seems to enjoy having her around. When he knocked on the door, Cole was in the middle of folding a load of laundry. I told him he could go play but that he had to finish folding and putting away the load of laundry first. I invited his friend to come in and wait for him to finish. Cole didn't want his friend to be bored so he let him sit on the couch and play on his Kindle Fire until he was done with the laundry.

It was no surprise to me that when she heard someone say his name, she came running to see where he was. She climbed up on the couch next to him and watched over his shoulder as he played games on the Kindle. I cringed a little when she completely invaded his personal space by snuggling up next to him and putting her head on his shoulder so that the side of her head was touching the side of his head. Bless his heart, he didn't say a word. He didn't move away from her. He just sat there and let her snuggle up to him, almost like he didn't even notice. Since it didn't seem to be bothering him, I didn't say anything. About 5 minutes later, I was in the next room and overheard him politely say, "Raya, can you move a little bit please? Your head is sweaty and it's making mine sweaty." She giggled and moved, and that was the end of it.

I just wanted to hug the kid. While I love Raya dearly the way she is, I also acknowledge that she can be really intense and kind of a lot to handle, and I don't think this little boy will ever know how much it means to me to see him being so nice to her all the time. That got me thinking about all of the other friends in our lives who have been so loving and accepting of Raya and her differences. The older kids who think her backpack is cute, and the kids in her class at school who are jealous that she can "eat through a straw in her stomach" instead of having to eat food. The kids who aren't grossed out when the tube accidentally gets pulled out at the park and watch in fascination as we put it back in. They don't try to ditch her when they're playing because they think she's too loud or weird or annoying. They play with her because they like to play with her, not because they pity her. They are the ones that look at her and just see their friend Raya. They accept her as she is and build their friendships around the ways that their unique personalities intertwine. I hope that kindergarten will be a year filled with those kinds of experiences.

As one of the most influential adults in her life, I have come to understand that my responsibility to her is to use the tools I've been given to help her overcome the challenges she has to the best of her ability and then to accept her for who she is, not try to change her into who I want her to be, no matter how good the intentions. I hope that all of the influential adults in her life will come to understand this. As she moves forward into kindergarten, my deepest hope and prayer for her aside from her safety while she is at school is for her to be accepted by her peers and by the adults in her life, and loved for who she is.

Wednesday, March 25, 2015

Happy yesterday, weepy and emotional today

Today was a little less awesome than the last few days that I wrote about yesterday. I knew it wasn't going to be the same when she slept until 7:30 this morning. That doesn't happen often. She's usually up at the crack of dawn with the rest of them.

When she woke up, I heard her dramatic yawning from down the hall but then she didn't get out of bed until I went in her room and helped her up. She was moving really slowly this morning and kept telling me how tired she was. Today was picture day so she wore her current favorite shirt and the leggings that came with it. Note that I did not say favorite outfit. She would prefer to wear the shirt with a fluffy skirt that does not match it except for the fact that they both have Hello Kitty on them. I tried to convince her to wear her very long hair down but she is fixated on ponytails now. Sadly, her kitty ear headband broke last week or she undoubtedly would have been wearing it. I never got the full story but there was something about her knee pushing on it kind of hard and then it broke. And now we know why we don't kneel on our headbands. She doesn't like anything but "a plain ponytail in the back" but I did talk her into letting me curl it. I also got her to let me take a picture of her on the way into the building.
(it was bright outside)

We were late, thanks to the snail's pace a certain little redhead was moving at. The kids were already at circle time with the speech therapist when we walked in but Raya still insisted on stopping to write her name after she washed her hands because "that's how we're supposed to do it, Mommy." Well okay then!

Piper and I ran a couple of quick errands and then came home so she could have a short nap, followed by another errand, and then we picked Raya up from school. She was all peppy and full of energy when she came bouncing out of her classroom, but by the time we got outside she was spent. That is something that happens fairly often. She goes nonstop and puts all her energy into holding herself together while she's at school or out in public. There is very little middle ground with her, and eventually she crashes. Her respite provider has been sick this week and wasn't able to come again today, so both of the girls got to accompany me to one of my top 5 least favorite places to take small children: the post office. Thank heavens Piper is still in her infant seat. Raya was not a happy girl when we pulled into the parking lot. She cried and whined and covered the buckles on her car seat so I couldn't get to them to undo them. I told her I would carry her feeding pump for her and she said, "Mommy, I'm just SO tired that I really wish you could carry me AND my backpack." And sometimes when you can see the exhaustion on your 5 year old's face, you rearrange the stuff you're carrying and carry her too. She is getting too big for me to carry very much. I was pretty proud of myself for getting all of us into the post office in one trip. People looked at me funny for carrying my baby in an infant seat AND carrying my 5 year old but I'm beyond caring about things like that.

I thought she would perk up when we got home but she really didn't. She was legitimately exhausted. As funny as it may sound, I think today's exhaustion may have been the fallout from how well she's been holding herself together the last few days. She was trying so hard to be happy and sweet today but couldn't stop herself from getting weepy and emotional too. Not many things are more pitiful than a 5 year old who is trying to be happy but can't stop crying at the drop of a hat.

I disconnected her from her backpack for a while in between bolus feeds so she would be hungry for lunch. It was a relief when she still wanted to eat her chicken sausage again today. I didn't think she would want to eat. I told her I wanted to put some smoothie in her G tube again like I had done before and she said she didn't feel like doing that. I told her I'd make her a deal, and that I would cook her a sausage for lunch as long as we could put smoothie in her tube while she ate the sausage. That sounded agreeable to her so that's what we did. Once again, she wanted nothing to do with tasting it, but I was totally fine with that since I still got it into her stomach anyway. Piper on the other hand, was thrilled to have a taste of my smoothie. She worked on her straw skills and did pretty well with it as long as I sucked the smoothie up into the straw and then pinched it before I put it up to her lips to try sucking out of it.
I am constantly amazed by how much food and liquids Piper can pack into that little stomach. That kid is never full and will eat anything, including whatever she finds on the floor, whether it's food or not.

After we ate lunch and Piper went back to bed for an afternoon nap, Raya wanted to snuggle. I had to pump a bottle for Piper for later, and by the time I came back, Raya wasn't in a snuggle mood anymore. I can't remember what she got upset about but the next thing I knew, she was crying again and it was a very sad cry. Bless her little heart, once she got going, she just couldn't stop.

I didn't quite know what to do with her but I thought some fresh air might do her good, so I offered to put a blanket in the back yard and let her lay out and watch something on Netflix on the iPad. I know that sounds a little ridiculous to be watching a tv show outside, but it turned out to be exactly what she needed. The weather has been absolutely beautiful and she was relaxed and happy until it was time to come in for dinner.

She didn't have much energy in the evening either and needed more help than usual with getting ready for bed. She was still as sweet and cute as could be though. When she was saying her bedtime prayers, she added in, "And thank thee that it can be summer soon so I can go swimming..." After she finished her prayer, she opened her eyes and smiled mischievously at me because she knows she's been driving me crazy lately asking me when it's going to be summer so she can go swimming. She gave me hugs and kisses and then happily laid down in her bed and snuggled with her carefully arranged blankets and stuffed animals. Those are the moments that melt my heart. I don't know what tomorrow holds for us but Raya and I are both looking forward to having a morning where we don't have to go anywhere.

I picked up my phone later to find that these silly big girls had taken a selfie with it:
I had a really nice evening with the kids tonight. They were (for the most part) delightful and we had a nice evening with getting things done together as a team so we could eat dinner. I am so grateful for my 5 sweet kiddos!

Tuesday, March 24, 2015

Turning a corner

Sometimes when things start to go really well, I'm afraid to write about it because I don't want to jinx things. I know it's silly but it's true. At risk of jinxing things, I'm writing about it anyway. We've had such a great few days that I can't go without documenting it.

Raya went to school on Friday and then after school, she came along while I took pictures of my niece in her baptism dress. She came along as my "helper" so she could earn a little bit of money. The back story here is that Piper has 2 very soft blankets that she is very attached to. Raya happens to also really, really like Piper's blankets and steals them any chance she gets. Piper was patient with it for a while but she has gotten quite possessive lately and it has resulted in a lot of screaming. I decided to have Raya do jobs to earn money so she could buy her own blanket just like Piper's. I got an envelope and wrote "Raya's Blanket Money" on it, and numbered from 1 to 12 since the blanket cost $12. Each time she earned a dollar, she would put it in the envelope and mark off a number.
It took us a little longer than I meant for it to, but she earned the last couple of dollars she needed on Friday by being my photography assistant. She was so excited to mark off the last numbers on her envelope!

 When the big kids got home from school, I took Raya and Kaida shopping so we could get Raya's blanket and they could both get new shoes. I was afraid that they wouldn't have any girly prints or that they wouldn't have the right blanket but they totally delivered!
She is one very happy little girl and I'm really proud of her for earning the money! And now I have one more blankie to steal. They really are the softest blankets ever. :)

On Saturday, a local organization put on an event for kids with special needs and their families. Donny and the older kids went to a martial arts seminar so I decided to load up the two little girls and take them to the event. I was a little worried about how it would all go, but I was pleasantly surprised. Most of the activities they had were perfect for Raya. Her favorite booths were the ones with animals that she could look at and pet. I tried to get a picture of her with her hand hovering over the bearded lizard (she couldn't quite convince herself to touch it) but she moved too fast. She did touch the baby alligator but I didn't get a picture of that either. She got to pet some dogs, a cat, and a ferret too.

After we made our rounds to the booths, we decided to grab some food. To my delight, Raya actually wanted to eat something AND they actually had something she could eat! She picked a bag of Fritos and I got my food, and then we looked for a shady spot to eat. We found some shade next to a ramada where some wildlife handlers were showing birds to the kids. There was a little tiny owl, a small falcon, and a great big bald eagle. I had seen bald eagles at the zoo before but I had never been that close to one before. While I have mixed feelings about birds like that being in captivity, it was pretty awesome to see it. I decided to go for broke and see if Raya would stand next to the handler for a picture, and she did it.

The eagle showed off its impressive wingspan and its tail feathers but eventually decided to turn around and hold still for a picture. After that, we sat in the shade for a minute or two and Raya showed me how she can open little bags of Fritos all by herself. The giant inflatable slide caught her attention and she decided she wanted to give it a try. I held her Fritos for her while she climbed all the way to the top, stopped to wave at me, and then slid down. Here she is waving at me from the top:
It started to get a little toasty out in the sun, so we headed for the shade again after she went down the slide. I asked her if she wanted to go again but she didn't. They were handing out ice cream and popsicles at another ramada so I got a popsicle and we sat in the shade to eat our snacks. Raya was very sweet and shared her Fritos with Piper, who can't seem to ever get full these days.

We took a little selfie and you can see how Piper could care less about the picture because she's too busy staring at Raya's bag of chips.

We wandered around for a while and made our way back through the booths, the food line, and a couple more bounce houses before we decided we were done. On our way out, we ran into Cookie Monster and had to stop for a hug.

We sat on a bench for a while so Raya could finish her bag of Fritos while we relaxed in the cool breeze. It was lovely. She did end up finishing the Fritos, minus what she fed to Piper. It was the most she had eaten of anything without me or her feeding therapist prompting her to take more bites in a very long time. She seemed to really enjoy herself. There was a big carousel and a train ride that we could have gone on without having to pay, but we had the stroller with us and I didn't have any help with the girls or anybody to watch the stroller for me while we went, so I didn't feel comfortable doing those. I was afraid she would get upset but she handled the disappointment really well. I was actually really surprised (and grateful) at how well she handled it. We decided it was time to head home so that Piper could take a nap. I almost didn't want to leave because we were having such a great time. It wasn't that we were doing anything exciting. It was just the first time in a really long time that I felt like Raya was actually present with me, if that makes sense. Usually her brain is going a million miles a second and she can't keep her body still, like ever. Ever. She is always going and going and going, and I know this sounds bad but it gets pretty exhausting to be with her for long periods of time. This was like a breath of fresh air for me. She talked the whole time we were there, but this time it actually felt like she was talking to me with purpose, rather than talking just for the sake of talking. We were connecting, and that doesn't happen often. She is usually much too busy for that. I feel like she has slowed down a bit this week. She seems to be a little more grounded and centered than she usually is.

That has continued on past the weekend. Whatever the switch is that has flipped in her, it is affecting her positively in many ways. She is eating again. The amount of food is still pretty small, but she is trying new foods again. That hasn't happened for a long time. She has been in a baked potato/tater tot/french fry rut for as long as I can remember. At her allergist appointment a couple weeks ago, we decided to trial chicken. Getting her to eat meat is hard because the texture is a challenge for her, but we were eating some of our favorite apple chicken sausages at dinner on Sunday and when I offered some to her, she actually ate it and asked for more. We were shocked, to say the least. The last few times we've offered her new foods at dinner time, it has not been pretty. I bought more of the sausages on Monday and she ate half of one for lunch yesterday, and the other half at therapy today. I try not to take very many pictures during feeding therapy but I couldn't pass up the opportunity to take a picture of her empty plate today.

She had a wonderful OT session today, and an equally wonderful feeding therapy session. She was in a delightful mood and was just as sweet and charming as could be the whole morning. The real shocker was when she fell asleep in the car on the way home from therapy. That is almost unheard of from her. She rarely ever falls asleep during the day, and rarely ever falls asleep on her own. Sleep has been one of her biggest challenges in the past 2-3 years. I actually thought she was faking when I pulled into the garage because she does that sometimes. She thinks it's really funny. Since she didn't move when I put my face up close to hers, I decided to just take Piper out of her seat and put her in bed for a much-needed nap. Raya was still asleep when I came out to the car to get her. If it was December or January (i.e. cooler outside) I would have let her sleep longer but it was too warm for that. It was physically painful for me to unbuckle her seatbelt and take her in the house since I knew she had zero chance of staying asleep.
(yes, I realize her strap is a little twisted and probably not quite tight enough but we have to pick our battles and I consider it a win that she didn't unbuckle herself while we were driving so let's just let it go)

Yesterday while we were eating lunch, I offered to share my smoothie with Raya. She does not like to drink smoothies. The texture is off-putting to her and she doesn't usually feel adventurous enough to taste the flavors either, so I knew there was little to no chance of her tasting it, and that was fine with me. I offered to share my smoothie with her and she said she didn't really want any. I said, "Well I have some extra that won't fit in my cup, so how about if I put it in a syringe and feed it to your stomach through your G tube?" I tried to contain my glee when she agreed to that without hesitation. Most of the time, she tells me her stomach doesn't feel up to the challenge. Since she was having a good stomach day, we went for it.
This one was made with spinach, blueberries, grapes, and apple juice. (I wasn't feeling too adventurous either.) I hadn't expected her to say yes or else I would have blended it longer. I had to stop a few times to pick bits of grape or blueberry skins out of her G tube. We did manage to get it all in without me blowing the syringe out of the extension and spraying food everywhere, and without making her puke. I went pretty slow (especially with the pauses to unclog the tube) but she told me she could "feel it up here" and pointed to her neck just below her chin, which means it was refluxing up into her esophagus, but she told me she couldn't taste it so that means it didn't go all the way up to her mouth. Another win for the day.

Speaking of wins, after a rough couple of weeks, we seem to be back on track with using the toilet. Raya and I are both happy about that. She doesn't like when she doesn't get there in time. She's been sleeping better lately, and when she wakes up at night, she's been able to get back to sleep on her own without needing an additional dose of her sleep medication. Another win! She's tolerating bolus feeds pretty well, but she has also been better at vocalizing when her stomach hurts. Being able to express pain vocally is a huge step in the right direction for her so I hope that continues. I don't know what to think about all of these positive changes, but I'm trying to let go of the feeling of waiting for the other shoe to drop and just enjoy it while it's here. I don't mean to be cynical, but the reality is that the next time she catches a cold, there's a very good chance that all of these positives will go away and we'll be back to where we were a month ago. My hope is that she will have a long stretch of good health and the delightful little girl we've been enjoying all weekend will be here to stay for a while.

Thursday, March 19, 2015

Just when I think I've seen it all.

I am no stranger to gross things. I grew up on a dairy farm where I waded through cow excrement in my rubber boots on a daily basis on my quest to deliver hay and grain to hungry cattle and round up cows for milking. I got peed on, pooped on, chewed on, and helped pull stubborn calves that were less than anxious to be born. We used to play baseball with chunks of dry cow poop and sticks, and I distinctly remember being knocked off of my bicycle when my brother threw what he thought was dry cow poop that turned out to only be partially dry, as I found out when the wet part made contact with the side of my face. (in retrospect, that was an impressive shot from about 30 yards away)

My farming days came to an end when I moved away to college, and then got married and became a mother. I've been a mother for 12 years and 9 days now, and I thought I had pretty much seen all of the grossness that motherhood x5 has to offer. I've dealt with every kind of vomit, poop, and stomach spill mess imaginable, or so I thought. Piper is trying to increase my realm of experience in those areas, and she's doing a pretty good job of it this week. Either that or she's trying to convince me that she is a puppy.

Monday afternoon, I was babysitting for a friend and Piper was in the high chair gnawing on some Tostitos (the rolled kind) after having finished a bottle and a container of baby food. I went to answer the door when my friend came back to pick up her kids and when we walked into the house toward the kitchen, Piper started to gag on a piece of chip. Then she vomited. And vomited. And vomited. She emptied her stomach onto the high chair tray. Then she started playing in it. I helped my friend round up her kids and was going to take Piper to the shower as soon as they left, but I didn't want to take the high chair tray off until I was ready to take her to the shower, so she continued to splash and smear it around with her hands. She styled her hair with it, which I've seen my kids do before so that was no big deal, but I had to draw the line at having her pick up pieces of the tortilla chip that she had thrown up and eat them again. That was gross along the same lines as some of the things our farm dogs used to eat.

Last night, she decided to push the envelope of grossness again. Her favorite things to play with these days are the tubing from my breast pump and everything related to Raya's feeding pump. She has also recently developed a love for getting dressed, which she defines as putting something on top of her head and pulling it down so it ends up around the back of her neck. I was in the middle of cooking dinner last night and heard the kids say, "Mommy, Piper pulled out Raya's balloon!" You know you're a seasoned tubie momma when your knee-jerk response to that statement is, "Raya, you'd better not leak on the carpet! Clamp the tube and lay down!"

I walked past the girls on my way to get the syringe and KY jelly from the emergency supply basket. Piper was happily playing with the pump tubing while Raya's AMT Mini One, balloon fully inflated and still attached to the extension tube, flopped around on the floor like a freshly hooked trout.
*note: I thought about calling this post, "She pulled out her sister's G tube and you won't believe what happened next!" but those things drive me nuts so I didn't. You're welcome.

As I turned to walk back to the living room, I looked up and saw Piper holding the G tube in her hand with a contemplative look on her face. I knew exactly what she was thinking. There may as well have been a marquee sign above her head. If there had been, it would have said, "Mommy, I'm going to put this in my mouth and you're too far away to stop me!" And she would have been right. I couldn't get around the kitchen table fast enough to stop her from popping the shiny, squishy, still inflated G tube balloon right into her mouth.

She took it back out as fast as she had put it in. My only regret is that I was not quick enough with the camera to get a picture of the yuck face she made. I am all too well-acquainted with the powerful, permeating smell of formula mixed with Raya's gastric juices, and I can only imagine how awful that must have tasted. But gosh if it wasn't funny to watch.
(I got a new phone and the camera stinks. She's too fast for it.)
You would think she would have wanted nothing more to do with the smelly little G tube at that point, but she was not happy with me for prying it out of her little fist. I sat down next to Raya so I could put it back into her stomach and Piper decided she would help me by pulling the pump (which was beeping) out of the backpack and continuing to wear the tubing around her neck like a feather boa. She is such a helpful child. While I tried unsuccessfully to stem the flinging of formula drops out from the end of the extension tube in her hand, Raya, who is incapable of holding still, knocked over the cup of water I had gotten for the G tube balloon. In a final attempt to get Piper to let go of the extension tube, I offered her a consolation prize of the tubing from my breast pump, which she thankfully accepted. (picture the scene from Cars where the tractors are running amok in Radiator Springs and Luigi says, "Here! Have the snow tires!") That kept her occupied long enough for me to marvel at how beautiful Raya's stoma looks compared to how it used to look:
Aside from being a little bit dirty and a little bit red, it is looking fabulous and is a far cry from before her scar tissue excision. But I digress...

Piper was still trying to help by diving for the medicine cup. I imagine she wanted to dump out the last 3mls of water that Raya hadn't spilled yet. I got enough out of the cup to fill the balloon and then handed her the cup so I could get on with the tube replacement.
I tried to let Raya push the tube in by herself. It didn't happen. It was worth a shot. We got it back in though. When I asked Raya later how it had happened, she said, "I was trying to walk away but Piper wouldn't let go of my tube so I just kept walking and she pulled on it and it came out." She was actually more upset that Piper wouldn't let go of the tubing than the fact that she had pulled the G tube out of her stomach. After all of the excitement was over and the formula puddle was cleaned out of the rug, we washed hands (mine and Piper's) and tried to forget about the part where Piper put Raya's stomach balloon in her mouth. These kids sure like to keep things interesting!

Wednesday, March 18, 2015

The rest of our Spring Break

Today is the first day of having everybody back to school and I can't put into words how much good it did me to have a couple hours of peace and quiet this morning. The weather is beautiful today with overcast skies and a cool breeze, so after I took Raya to school, I put Piper to bed for her nap, opened the doors & windows, and just soaked in the silence. It was fabulous. I did start off my day by listening to this talk:

It was exactly what I needed to hear today. I have felt swallowed up by all of the things I need to do and want to do, and have allowed myself to start feeling guilty and putting too much of my self-worth on the quantity of my to-do list that I don't check off often enough, and this helped bring me back to a better place. I'm glad I decided to push the play button.

Spring break was wonderful. We really did have a nice break. It was busy and exhausting, but it was really nice. Our neighborhood had a spring festival last Saturday so after Donny & the big kids got home from their karate class, we loaded up and walked over to the park for lunch. We learned our lesson from last year and brought a blanket so we could sit in the shade to eat this time. The HOA did a great job of putting it all together. Lunch was yummy and there were all kinds of activities for the kids. The older kids went up and down the climbing wall several times and finished out the afternoon on the zip line, and Raya played in the bounce houses and had a little pony ride.

 After the party, we came home and got some cleaning and yard work done. I took Ashtyn shopping for her birthday and we picked up a few things that we needed for the weekend. While Donny and the older kids were working in the back yard, I had one of those little "moments" when saw the little girls watching out the door. Before Raya, I never would have given it a second thought, but I looked over and saw Piper on her knees and the thought that popped into my mind was, "Well how about that, some kids CAN hold a tall kneel position without months of physical therapy."
I don't feel like I was ever unappreciative of my other kids meeting their developmental milestones on time and without intervention, but now that I have a more detailed understanding of those milestones and what it entails to have developmental delays, there is a different kind of joy that I find in watching my baby meet them. (on her own timeline, but she's meeting them)

On Sunday, we went to church and then came home and finished getting the house ready for company. My parents flew in that afternoon for a visit and we had a small birthday party for Ashtyn that evening. The kids were really happy to see their grandparents. We hadn't seen my dad for a little over 2 years and my mom for a little over a year so we were happy to have them come.

 On Monday, the kids rode scooters & bikes to the park. The weather was gorgeous and sitting in the shade with the breeze blowing was heavenly!

Piper ventured into the sand for the first time:
 And ate sand for the first time:

 Tuesday was Ashtyn's birthday. She and I got up early and had a morning out all by ourselves. It was a special day and I was grateful to have a chance to get away alone with her for a while.

After the temple and breakfast, we went home and got ready for Raya's marathon of appointments. She had her usual OT and feeding therapy appointments and then we headed to the allergist. When I scheduled her allergist appointment 4 months ago, I didn't realize the kids would be off on spring break or I would not have scheduled it on Ashtyn's birthday. By the time I realized it, rescheduling would have meant waiting a long time so we just went ahead and did it. I had my fingers crossed that it would be as quick as our last appointment there but it was not. We ended up being there for 2 1/2 hours. I felt bad that Ashtyn and my mom had come with us because it turned into a very long and boring afternoon. I was really glad that I had been able to leave Piper home though. We sat in the waiting room for a long time before they called Raya back to get vitals. Then they sent us back to the waiting room because there were no exam rooms open yet. Thankfully Grandma and her Kindle Fire helped keep Raya happy while we waited.
Then we waited for a while in the tiny little exam room. We left Grandma and Ashtyn in the waiting room because the exam rooms are really small so it was just Raya and me. We got bored really fast and she passed time by alternately being silly and crabby.

She kept telling me how bored she was (me too) and my phone battery was dying so we couldn't do anything entertaining with that either. I felt like I had a lot to talk to the doctor about and didn't really get to go over everything I wanted to because he was running so far behind.  We did agree that after 2.5 years, it would be reasonable to do some allergy tests with a few foods. That was a giant flop. First, I felt bad for springing it on Raya like we did. She had no idea what the nurse was going to do until she poked her arm with the histamine control. After that swelled up, we decided to go ahead with about 10 foods. Absolutely ZERO of them were positive. Even the ones that she has had clear and obvious reactions to. It's really irritating. We are obviously not going to just trust those tests because scratch tests have a fairly high failure rate and we know she IS allergic to some of those foods based on previous reactions, but we are going to move forward with adding a couple things into her diet to see how she does. We are going to start with chicken (ha ha, because she's totally going to eat chicken just because I tell her she can...) and then if the chicken goes well, in a couple weeks we will try oats. (IF I can find some certified wheat-free oats because we know she is allergic to wheat.) 

After 2 1/2 long hours, we finally got off on our way and went home to get ready to go out for dinner to celebrate Ashtyn's birthday. We went to Chili's and probably won't go back. The food was not impressive and they have these automated screens at the tables now, which kind of made things awkward with the server. BUT we had fun and Ashtyn was happy. We picked up some dessert on the way home and sang to her before we sent the kids off to bed.

Wednesday, my parents and I took the kids to play golf at the hideous but fun new golf place. (hideous might be a strong word but it was much more attractive as hay fields) It was SO MUCH FUN!! We had a blast and the kids all got to play. 
The kids can't wait to go back there again. Now that the soreness is gone from all of the shoulder & upper back muscles I didn't know I had and hadn't used since my pole vaulting days, I would love to go back too. :)

In the afternoon, we took the big girls to get their hair cut. Raya wanted no part of it. Her hair has never been cut (not even a trim) and is now below the waistband on her pants. She gets upset if I ever mention trimming or cutting it, so for now I'm not going to fight that battle.
We grilled flank steak for dinner and then took a few pictures before we had to take Grandpa to the airport. 

Thursday and Friday were very low-key. Donny and I took advantage of having Grandma here and went out to dinner Thursday night. Friday we just relaxed and enjoyed each other's company until it was time to eat dinner and then take Grandma to the airport. We had a nice week!

Our school district always does a professional development day on the Monday after fall & spring break so the kids didn't have school Monday. By this morning, I was ready to have a couple hours of peace and quiet in the sanctuary of my house while Raya and the big kids were at school and Piper took a nap. It was a great spring break and I can't believe school will be out in 2 months!

Thursday, March 12, 2015

Spring Breakin' It

We are on spring break and have had company in town (a rare occurrence!) so I've been MIA. We have had a very busy but good week so far. I'll share more later but for now, here's Raya's latest self-portrait from OT:
It is an absolute gem and probably my favorite one she's done so far. She started with the head, then drew the body, eyes, arms, and legs. Then she added the feet, toes, hands, and fingers. She also added her heart, ears (first time she's ever put ears on!), hair, nose, mouth, the 3 tiny scratches she currently has on her forehead, and the little black mark in the middle of the heart is her G tube. I love this picture!

Friday, March 6, 2015

Thoughts on food allergies...

This post may spark criticism on all fronts but I've had some thoughts stewing for the past couple of weeks and, for better or worse, I'm ready to share them. These are my opinions on what is always a heated topic, so if you don't agree, that's your prerogative but be respectful about it.

I got a phone call the week before Valentine's Day from the health aide at my kids' school. My son's teacher had asked her to call me because a parent of one of his classmates wanted to bring in a prepackaged treat for Valentine's Day that contained nuts, and the teacher wanted to know if that would be okay with me or if it would pose a danger to my son. She said the treats would be passed out in class but that the kids would not be allowed to eat them in the classroom.

I was without words. Honestly, I just didn't know how to react at all. Would it be dangerous for him to have prepackaged, nut-containing treats passed out in his classroom? No. His allergy is not so extreme that he can't be in the presence of something prepackaged that contains nuts. Would it be okay with me? I don't even know what to say to that.

My son is 10 years old and was diagnosed about a month before his 4th birthday. I ate peanuts and peanut products during my pregnancy and the entire 13 months that I breastfed him, as I have done with our other 4 kids (even Raya, just not for as long as the others). He started eating peanut butter at the same age as his sisters that are not allergic to any foods. He used to eat peanut butter & jelly sandwiches for lunch every day and waffles with peanut butter on them for breakfast a few times a week. Somewhere between 18 months and 2 years, we noticed that he vomited after eating crunchy peanut butter but not creamy. We had no experience whatsoever with food allergies, as neither my husband or I have any and none of our parents or siblings do either. We assumed it was a toddler thing and that he just had a texture issue with the crunchy peanut butter. Even our pediatrician didn't think it sounded like an allergy and that it was probably a texture issue. Since she didn't think it was an allergy, we didn't pursue allergy testing until about a year later when he had a clear and obvious allergic reaction to cashews.

About 6 weeks after his cashew reaction, we got in for allergy testing and confirmed that he was allergic to peanuts, all of the tree nuts, oats (which he had also been eating since before his first birthday) and a couple of environmental allergens. We eliminated peanuts and tree nuts from his diet the day he reacted to cashew butter and have not looked back. However, on the advice of his allergist, we have not completely removed peanut and tree nut products from our home. His allergies are not so severe that he is triggered by airborne particles or trace residue. We have kept him safe but have also been conscious of not creating a bubble for him. As he has gotten older and more able to comprehend his allergies, we have worked to empower him in taking responsibility for his own safety as much as possible. As soon as he was diagnosed, we taught him to never accept food from anyone but his parents without asking if it had nuts in it first. We taught him the names of the tree nuts and showed him how to look at the ingredient list on food packaging to see if the item contained nuts. We taught him how to use an EpiPen and taught him to be aware of what his allergic reaction symptoms felt like so he would know when to take Benadryl and when to use an EpiPen.

We also taught our other kids to help keep him safe. We have rules in our house about where in the kitchen peanut butter can be used. We have a rule that if they're making a PB & J sandwich, they have to get the jam first, and they can't dip a knife into the jam jar after it has touched peanut butter. He is not allowed to touch any dirty dishes with peanut butter on them, nor is he allowed to make anyone else's PB & J sandwich for them. If peanut butter gets on anything, they have to clean it up immediately. We have had family night lessons about when and how to use EpiPens so that everyone in our family understands how to keep the children with allergies safe and what to do if there is ever an emergency. What we do in our house works for us and has kept him (and Raya) from having any allergic reactions since they were first diagnosed. Sending him to school is another story.

I cannot control what happens at school. I have never asked his school to become nut-free, nor would I push for a nut-free school. I have kids without food allergies who like PB & J sandwiches for lunch too. I have one child who struggles with bouts of low appetite and picky eating, and since weight gain (or lack thereof) has always been a struggle, she eats what she feels like eating and getting her to eat a decent lunch would be hard for us if the school banned peanut butter. I was more nervous when he was younger, and less able to recognize that a food could contain his allergens. Having his classroom be a peanut-free and tree nut-free classroom helped me be comfortable with sending him to school because I knew that nobody would be sending in something that, could potentially kill my child. We have always packed lunches from home for the kids because it costs less and they get food that I know they will eat. Since he takes lunch from home, I have not stressed about him accidentally getting something from the cafeteria that contained nuts. His school offers a nut-free table and allows kids to have friends sit with them at that table as long as they have a nut-free lunch, but we have opted not to do that because at home, we all eat at the same table.

With all of that in my head, it was hard to even know what to say to the question of whether it would be dangerous to him to have prepackaged treats with nuts in them handed out in his classroom and whether it was okay with me. The answers to those questions conflicted each other. No, it would not be dangerous to him unless he ate them, but no, I am not okay with it. It really rubbed me the wrong way that someone wanted to bring in treats with nuts to a classroom that they know is nut-free.

Why am I not okay with it? I don't know. I had quite the internal dialogue with myself over it before I could formulate a good response for the school health aide. We eat treats with nut products in them at home, so why is it different in the classroom? Because when we do at home, we provide him an alternative that he likes just as much as the rest of us like the nut-containing treats. We don't leave him out. Yeah but there will be other treats in his classroom on Valentine's Day so it's not like he won't get anything at all. True. And life isn't fair. Sometimes one kid gets something that the rest don't, and vice-versa. But this still felt different to me.

What it finally came down to was this, which was my response to the health aide:
As long as he doesn't eat the treats, they won't make him sick, so I guess technically it's okay if the parent sends them into the classroom, but I would rather they didn't. Let his teacher know that she can ask the parent if it is so important to them to bring in that particular treat that it is worth intentionally singling out and excluding the only child in the class that could potentially die from eating it. If the answer is yes, then they can go ahead and send them.

Was that a dramatic answer? Perhaps, but it was also a completely accurate statement. I don't know if that message was relayed to the other parents, but no nut-containing treats were brought into the class for the Valentine's Day party. 

 Food allergies are such a hot button topic these days. From the perspective of someone who parented for 5 years with no food allergies to worry about before being faced with life-threatening food allergies, I can say that it is very difficult to fully comprehend what life with food allergies is like until you have experienced it. As such, it is difficult to understand why parents of children with food allergies get upset about things like this situation we encountered. It is also very difficult to explain it.

What's the harm in bringing in something prepackaged that won't make the kid sick as long as he doesn't eat it? Instead of thinking about it in terms of food, think about it in these terms:
  • excluding a child based on something that is not his fault and is completely beyond his control
  • singling the child out and highlighting in front of all of his classmates that he has something different about him
  • showing a classroom full of children that it's okay to exclude someone whose medical condition makes them different when it inconveniences you (if you want to call this situation an inconvenience)
  • showing the excluded child that his safety and health is of less value than his classmates' ability to eat something that could kill him
  • teaching the other children that their wants are more important than their classmate's safety
  • giving other kids something to make fun of him about (food allergy bullying is becoming more common, and it is terrifying)
With severe food allergies, like my children's potentially fatal nut allergies, the reasoning is clear. One bite could kill them. Imagine your child walking across a street without looking both ways first. They might make it across safely, but they might also die with the first step away from the curb. Non life-threatening food allergies and other similar conditions can still make life miserable for the person. Maybe the food wouldn't cause a life-threatening anaphylactic reaction, but it could cause severe abdominal pain, diarrhea, and vomiting. Would that be any less awful of a thing to do to a child? Can you imagine being in your elementary school classroom and having a sudden onset of uncontrollable vomiting and diarrhea? That would be humiliating! Other chronic food-related conditions such as celiac disease and eosinophilic disorders cause reactions that are slower in their onset than acute food allergy reactions but are also longer-lasting. They can cause long-lasting damage to the organs they affect, as well as widespread effects on the child's overall health. Beyond the physical ramifications, there can also be psychological consequences for children who have had severe allergic reactions to food. Do what you want in the school cafeteria, but leave food out of the classroom for the sake of the children whose lives could be permanently (or even temporarily) altered because of it.

One of the common arguments by parents whose children do not have food allergies is that their children have the right to bring treats to class to celebrate their birthdays. To those parents, I ask this question. Does your child want to celebrate his or her birthday in a way that makes his or her friends with food allergies sad because they can't have the treats they brought? Would your child want any of his or her friends to get sick because of the treats they brought? Is that really how your child wants to celebrate, or would he or she rather bring something in that ALL of his or her classmates can enjoy? 

The day I got the phone call from the health aide, I had a talk with my son about it after school. I explained the situation to him and I asked him, "If someone brings in a treat that everyone in your class except you can have, would that bother you or would you not care? Remember that there will be other treats that you can have." Honestly, I expected him to say that he wouldn't care. He thought about it for a minute and then surprised me by responding that in his classroom, that WOULD bother him because he would feel left out.

The issue does not have to be so all-or-nothing. As a parent of children with food allergies, I do not expect the entire world to conform to their needs, but the classroom is one place where they deserve to be safe, and they deserve to be included in everything that happens to the fullest extent possible. If that means that modifications have to be made for things like birthday celebrations and class parties, then so be it. Excluding nuts from those celebrations is a small price to pay in order to make that happen. As frustrating as it may be to be given restrictions on what can be brought into the classroom, it is an opportunity to teach your children compassion and consideration for the needs of others. In the case of potentially fatal food allergies, this need DOES come at a higher priority than any possible reason for bringing those restricted foods into the classroom.
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