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Friday, June 26, 2015

Radio silence and playing secretary

I've been pretty quiet lately. It hasn't been completely intentional. It's been a pretty wild & busy summer by our family's standards. There have been some really awesome things that have happened, like when I was invited to fly across the country to speak at a sales meeting for a large company that manufactures many of the products that we tubie families depend on to keep our kiddos alive & thriving. That was a great experience for me. Like, really great. As it turns out, I love public speaking! I always have, but give me a topic that I'm passionate about and I really REALLY love it! That is something I really hope to have more opportunities to do in the future.

We also got to have my mom come and visit while I went on my little mom-cation for my speaking engagement. She held down the fort while Donny was working and she even got to experience the joy of re-inserting an accidentally dislodged G tube while I talked her through it over the phone. I was so proud! It was a rather humorous situation, actually. She called as I was opening the door to get in my friend's car at the airport and come home. We had JUST gotten started with the tube replacment instructions when her phone battery (which needs replaced) started to die, so she had to get Raya to move next to an outlet so she could plug her phone in so we wouldn't get cut off. Then she had to put it on speaker phone, and we kept having to tell the kids to be quiet. Especially Raya. "Raya, sweetheart, you need to stop talking and let Mommy be the one to tell GramE what to do, okay?" She is such a funny kid when it comes to her medical stuff.

We've kept busy with swimming lessons, summer movies, pool days, lunch & library time, piano lessons, staying out of the blistering heat, and (of course) a plethora of doctor and therapy appointments. We are having a good summer and it's wearing me out. All that busyness, combined with the fact that I hadn't completely gotten over my cough that I got in May before I came down with an awful sinus thing this past week, and that 3 of the 7 of us have not slept well this week (well, really there are 2 of us that haven't slept well in about 5 1/2 years...) and yeah, just not enough steam left at the end of the day to write about it all.

Oh but then there's this funk I've been in, thanks to my unofficial full time job. The phone calls. I have spent SO MUCH TIME on the phone trying to keep everything under control for Raya. At the end of May, it was the IEP stuff. We had multiple meetings, it was super stressful, I had to run around collecting doctor signatures, etc., but we got it done. I thought I'd have a month or so to just breathe and not stress about any of that stuff until I got a phone call last week having to do with eligibility for services that left me in tears for a few days. The first day, it was a full on ugly cry, first to my sweet friend over the phone and then to my poor husband. I don't want to share details but this is what I will say. When you live every day of your child's life with the purpose of keeping them as healthy as you can in spite of their medical conditions, helping them overcome the physical and psychological effects of those conditions, and trying to undo the damage that living in survival mode has done over the years; and when you've seen just how much they BENEFIT from the therapies and services they receive and you KNOW they would not be where they are without them, the threat of having those things taken away is gut wrenching. Terrifying. Beyond stressful. It feels like someone shot out the light bulb at the end of the tunnel that you had just started to be able to see, but nobody from the light bulb company will tell you why, or how to get a new one. They tell you that you might be able to if you provide them with the right proof that you need one, but then you're left to yourself to figure all the rest of it out. It is burdensome and unfair to the child who has worked his or her butt off, literally every week for the first years of life, and made amazing progress to then suddenly have the rug yanked out from under their feet because they're doing just well enough to not qualify but not quite well enough to continue progressing and thriving without services.

Because that news and the onslaught of responsibility it added to my plate wasn't stressful enough, I got a phone call this week from the home health company we have used for 5 1/2 years, since the day Raya was discharged with her very first NG tube at 2 months old, notifying me that due to disagreements between her secondary insurance company and the home health company, we are no longer able to use that company. Nothing has changed contractually. We have had the exact same combination of insurance companies and home health company for 4 1/2 years now, and it makes absolutely no sense that they (both the insurance company and the home health company) are making us switch, and it is really disappointing. I don't like changes when it comes to Raya's medical care. I've had many moments of frustration over the last 5 1/2 years with the company we were using, but overall they treated us very well and we always got what we needed. There were many times when I called and asked them to try and get us new things to try out, and they almost always came through. Even though they made silly mistakes like sending us diabetic socks instead of drainage bags, they got us what we needed and that is what kept me with that company for so long and through the frustrating moments with them.

Now, we are being forced to switch to the only company contracted with her secondary insurance. Based on previous interaction with the staff of their enteral division, I am not happy about this at all. The new company makes no effort to hide the fact that money is their priority, not the needs of the patients they serve. It is really disappointing to feel like you really are just a number and a paycheck. In my first 2 interactions with their staff this week, I repeatedly heard, "Well, I know the other company got you that product but we won't order it because it's more expensive than xyz alternative product and the amount we get reimbursed by insurance is low so it's not cost effective for us." I understand that concept, but good grief, you think that's going to make a new client feel good about getting supplies from you?? We were able to overcome our first hurdle with them concerning the type of pump we are getting, and for that we are grateful, but I'm still not over the disappointment of feeling like we were let down by the other company and the insurance company and being forced into a change that I didn't want to make. I'm sure it will be fine once we adjust to the change.

That's a little sampling of the things that have stressed me out this month. Somehow, words don't do justice to how dealing with that side of things makes me feel or the toll it takes on me mentally and emotionally. As I was taking a short break between phone calls to get food for one kid, wipe another kid's bum, and talk to all of them so they'd feel like I'm not neglecting them, I had a bit of an epiphany. Is there a word like epiphany that has a more negative connotation? If so, then that's the word I'm looking for. Every time I take Raya to a doctor's appointment, no matter which doctor it is, they always want to know if she's making progress with eating by mouth and with using the toilet. The older she gets, the worse those conversations make me feel as a mother. Often, I walk away from them going, "What is wrong with me that my 5 year old eats about 50 calories a day out of the 1350 she needs in order to grow, and she's still in pull-ups 95% of the time?! And my house is a mess and I haven't done half the things I've wanted to do with my kids this summer and I haven't taken the last 3 classes I need so I can apply to nursing school, and the kids have eaten burritos for dinner 3 times already this week, and all the other things I feel like I'm failing at."  I realized as I hung up the phone from the 4th or 5th phone call that afternoon that maybe if I wasn't doing the full-time job of coordinating care, advocating for what she needs, scheduling appointments, going to appointments, calling insurance companies, calling home health companies, waiting for deliveries, and so on, I would be able to be more consistent with actually caring for her needs. I imagine there is a fine line between that statement and making excuses for myself, but the last 2 weeks have pushed me to my breaking point and made me question how I am EVER going to get her toilet trained and off of her feeding tube. And I won't even talk about how crappy I feel at the lack of attention I am able to give to my other kids' needs because that's a can of worms that I don't have the energy to deal with.

THIS is the part of special needs parenting that I had no idea was coming. I knew seeing her sick/hospitalized/hurting would be hard. I knew the unknowns of her medical conditions would be hard. I knew that caring for her needs would be taxing. I had no idea that coordinating her care, being her unofficial case manager, and fighting through red tape year after year would be so. damn. hard. It shouldn't be this way. On one of my really tough days last week, I told Donny that all I want to do is take care of my kid. I am so tired of fighting for every single thing. I just want to be the mom for a while and not have to even think about all of the paperwork.

All that said, I would do it all again (and believe me, I will continue to) and I would do it for every single one of my kids. (I hope they never feel like I'm not as devoted to them as I am to Raya because I really would do anything for any of them.) It's just exhausting and I am worn out. I actually could have fought being forced to switch home health companies, and originally that was my plan. After thinking about it for a day though, I just couldn't do it. I gave myself permission to give up that fight, and I'm actually pretty proud of myself for that. I waved my white flag and we are making the switch, and so far I've managed to keep a pretty positive outlook on the situation. I can only pray and hope that the rest of the fires I've been trying to put out lately will turn out as favorably.

So all of that pretty much sums up why I haven't been writing. I've been going through some stuff, and sometimes it's just easier to stay quiet and process things privately than to try and sort it all out or try to make like everything is fine. Things WILL be fine (I hope), but the last 2 weeks, it has not been fine. It has been hard. I keep telling myself that when I am getting more sleep on a regular basis, it will change my life. I've also brought back my 2010 mantra of "It won't always be this way" because yeah, sometimes I just have to remind myself of that. It won't always be this way. It will be better, it will be worse, and it will be everything in between but it won't always be the way it is right now. Overall, right now is good, and I'm happy with our "right now."

Sunday, June 21, 2015

The dad who also feeds Raya

I think have done a great injustice on this blog. I think I've made it sound like I'm the one who does it all. I'm not and I don't. I'd be lost without this guy:

We were kind of just babies when we got married. I don't think we really had a clear picture of what we wanted out of life, but we knew we didn't want life without each other.
I chose well, and I like to think he did too. We make a good team. The kinds of challenges we have faced in the last 5 or 6 years have tested us in ways we had never been tested in. I think we have also found joy in places we hadn't found it in before though, and I think we have gotten better at being happy in whatever our circumstances happen to be. We've learned to lean on each other and to trust in God and His plan for our family.

I am a stubborn person. Too stubborn for my own good much of the time. Remember how I make it sound like I do everything? That's because I TRY to do everything. Sometimes I can manage what I take on but most of the time I fall short in places that I wish I didn't fall short in (i.e. keeping a tidy, clutter-free house and forgetting to do things that I said I was going to do). With all the things I'm juggling, I feel like I'm constantly dropping something and barely keeping my head above water. I've been sick for about 6 weeks now too and the kids are home for summer break, which is wonderful but demanding, and I know I'm not the easiest person to live with. Somehow, Donny finds the patience to handle me though.

He has always been a very hands-on dad. He started changing diapers from day 1 of fatherhood (okay, maybe more like day 3 or 4 because nurses & our moms were changing them the first couple days). Things got off to a little bit of a rough start with our first one and he was always right there to help me when she didn't want to eat for those first few weeks. He has cleaned up a lot of puke and poop too. He has never batted an eye about being on his own with the kids, whether it was for a few hours or a few days. Bodily fluids sometimes make him cringe and/or gag and I know that seeing his kids hurt is particularly hard for him, but he does what needs to be done when it needs to be done.
baby #1 in 2003
He never complains about anything and he listens to me when I complain about lots of things. I have had some rough days in the past couple months dealing with the paperwork/eligibility/logistics side of things and even though there's not usually anything he can do to fix the problems, he knows exactly how to help me work through the panic mode I always go into and he's patient with me and my panic mode. I know that can't be easy!

He teaches the kids things. He encourages them to find and develop new interests and he helps them figure out how to do that. He teaches them to set goals and make a plan to reach them. He teaches them to talk positively to themselves and about themselves, and he just genuinely loves them for who they are. He sees their potential and tries to show them that they are not limited in what they choose to do or accomplish in life. He is a constant, steady positive influence in my life. This is the part where I would normally say something like "I could never do it without him!" but I can't say that. In the last year, we've seen a young family member with young children be faced with that exact situation. It happens, and it can happen to anyone, so we never say never. We've always had a morbid sense of humor about the subject, which I think has been healthy for us because it has allowed us to talk about an awful but important thing. So, all that being said, I am pretty sure I could survive without him, but I sure hope I never have to because he is my partner in all this craziness and he keeps me from losing my mind. I knew I made the right choice by marrying him and nearly 14 years later, I am still seeing every day why that was the right choice. Marrying young brought unique struggles but in a way, we have grown up together and I wouldn't have had it any other way.

Thursday, June 4, 2015

Aspiration.

Until I entered the world of parenting a child with medical challenges, the word "aspiration" meant a goal or something I hoped to become. I probably had heard of the other definition but I had no experience with it. (or at least I didn't think I did. In retrospect, I'm pretty sure Ashtyn has had aspiration pneumonia before but I digress...)

According to Merriam-Webster, definition 2c of "aspiration" is: the taking of foreign matter into the lungs with the respiratory current. That is the definition we are dealing with this week. It's not Raya though...

(I propped her up against the door and took her picture in her pretty dress)
I've known since Piper was born that something was not right with the way she swallowed. Her suck-swallow-breathe coordination was not good when she was a newborn. She squeaked. She coughed. She held her breath. She refluxed. She sounded rattly and wet. At 2 weeks old, she got sick with nasal congestion (another sign of trouble) and when she drank bottles while she was sick, she turned shades of blue on me that none of my babies had ever turned before. It was scary, and I don't scare easily. I knew it wasn't right. I made this video when she was 3 days old to show to her pediatrician:




She also was unable to nurse after the first day. She made great efforts for about 24 hours and then never latched on well again, despite numerous attempts. I am still convinced that she had a tongue and lip tie that was preventing her from forming a good latch. I talked to her pediatrician about the loud breathing, inability to latch, and all of the abnormal noises she made while she ate and after she finished eating. Each time we discussed it, he reassured me that as long as she wasn't getting pneumonia, she was okay. I mostly agreed. I knew that if we did do any testing and it showed that she was aspirating, we would be looking at another kid with a feeding tube. Obviously I am eternally grateful for Raya's feeding tube because it has saved her life every day since she was 2 months old, but it is not a road that I wanted to go down a second time. It hurt my heart in a way that I can't put into words to think about doing it again, and I kept pretty quiet about the whole thing. The emotions of having another baby after you've gone through having an undiagnosed chronically ill child are complex and indescribable. Logical or not, I was afraid people were going to think I was being a hypochondriac about Piper and so I really only talked about my concerns with Donny, my sister, and my closest and most trusted medical mama friends. One of them was even kind enough to loan me her pulse oximeter for a while so that I could have peace of mind. I told her ped that I had borrowed a pulse ox and then felt like he probably thought I was a paranoid nut job for doing that. (he probably didn't, but I wouldn't blame him if he did because he had never met me before Piper's 1 week well check)

The pediatrician and I agreed that if things seemed to get worse as time went on or if she got pneumonia, we would do a modified barium swallow study (MBS). Wait and watch. Part of me hated that plan, but I also knew that there was no use jumping into a bunch of testing if we didn't see ill effects from what may or may not have been happening and so we waited.

In some ways, things did get better. She eventually stopped squeaking while she was drinking her bottles and as long as we didn't use anything but a slow flow nipple on a Dr. Brown's bottle, her choking became minimal as well. Piper has done everything at her own pace. She didn't hold her own bottle until she was almost 8 months old. She didn't start crawling on her hands and knees until she was 11 months old. At 15 months, she has taken 2-3 small steps a couple of times but is not walking yet. She has never fallen into the category of being delayed, but she is at the slower end of the curve. (for the record, I'm totally okay with that. babyhood is not a competition.) I tried to advance her to a medium flow nipple but each attempt left her choking and sputtering and sounding wet so we went back to the slow flow. At the age when the Babycenter emails were telling me she should be switching to a sippy cup, we were still very much dependent on slow flow bottles. 

Drinking liquids was not the only thing that concerned me about her swallowing. I don't remember when it started, but at some point, she started to occasionally gag and vomit during meals. It always seemed to happen when she was down to a couple bites of food left on her tray. The last Cheerio on the tray would bring her entire meal back up with a vengeance. It started happening once or twice a week and we knew it was directly a result of the way she swallowed, as opposed to a sensory issue, volume tolerance issue, or food allergy issue. (we kind of know what those vomits look like at this point, ya know?)



As her first birthday approached, I was once again fighting a nagging feeling that the swallow issues were not improving enough for me to continue ignoring them. When she got her 3rd croup in a 5 month span, I decided I'd had enough of the waiting for pneumonia. The day of her 1 year well check, she was sick with croup. I asked the pediatrician if 3 croups in 5 months could be evidence of aspiration. He didn't think so. I told him I was ready for him to order a swallow study and he obliged. I don't think either one of us really expected abnormal results. 

The MBS almost didn't happen. His office faxed the order over to the clinic I asked him to send it to, where Raya has had all of hers done and that clinic was supposed to call me to schedule the MBS. Their radiology department is notoriously awful at scheduling things and following up with people, so when I hadn't heard from them after a week or two, I called them. I left multiple voice mails and waited for a return call that never came. In the mean time, I was slowly but surely talking myself out of the swallow study. I decided I wouldn't bother with it until we went back for her 15 month well check and that I'd have the doctor re-fax the order then. A couple weeks before that, Raya had a routine follow-up appointment with her GI doctor. We were almost finished and Piper was getting crabby, so I gave her a small drink of water out of my water bottle. She coughed and sputtered and spit water everywhere. Raya's GI looked up from what she was doing and said, "Does she have a swallowing problem?" I explained that I had suspected swallowing problems and we had finally decided to go ahead with a swallow study but that radiology had never returned my phone calls about scheduling after the doctor's office faxed the order over. She went straight out into the hallway and asked one of the ladies at the nurses' station to track down the clinical nurse manager. She came in and got my contact info, Piper's info, and the pediatrician's info and told me she would follow up with me. 

Sure enough, the next day, she called me back and said that radiology told her there was no order for Piper's MBS but that she had called the ped's office and they had faxed over another one. We got it scheduled for May 19th. Then I got sick and Piper got sick, so I rescheduled it. (Read: I found out how much we were going to be paying out-of-pocket and wanted to make sure we got an accurate study!) Then she was still sick so I reschedule it again, this time for 2 weeks later. As the new appointment date approached, she still had a very wet-sounding cough. I almost called to reschedule again, but then decided to go through with it since her wet-sounding cough had not improved at all in 3 weeks and was noticeably wetter-sounding every time she drank a bottle.

I was not thinking clearly when I agreed to a 10:15 check-in time for 10:30 MBS on the same day Raya has therapy at 11:00 but by the time I realized that's how it was going to happen, it was too late to do anything about it. Thankfully, we have understanding therapists who happened to have some flexibility that day so we just came a little bit late to therapy. 

Poor Piper was not a happy girl. This kid LOVES food. She LOVES her bottle, and you just don't mess with her and her food. She could not understand why nobody would feed her that morning. She had to be NPO for at least 4 hours before the study, and I didn't wake up early enough to wake her up so she could have a bottle before the 4 hour cut-off so she was STARVING by the time we got to the clinic. 

 The speech therapist who did her study was not one that I had worked with before but she was really nice. She had a graduate student with her and there was also a radiology tech in the room when we went in. They got Raya set up with a portable DVD player in the other room while I got out all the utensils & supplies I had brought for the swallow study. They kind of laughed at how prepared I was (in a nice way, not like they were laughing at me. I think.) but I told them it was not my first rodeo. They were talking about how they'd had a mom in there the day before who was watching the screen and commented about her child aspirating before the radiologist or speech therapist could say anything. Yeah. Been there. They had all the barium ready and we were going over Piper's history while I got her out of the stroller. I told them that fatigue seems to be a factor in how she swallows, and that she seems to swallow more poorly as she goes along, so they agreed that it would be okay for me to feed her a couple ounces of milk before we started the barium. Holy smokes was she ever excited to see that bottle! She grabbed it and sucked it down like she hadn't eaten in a week. 

After she'd had her little snack, I strapped her into the special seat and the radiologist came in. I positioned myself so I could see the screen but I didn't have enough hands to video the screen like I wish I could have. In case anyone is not familiar with what the setup is like on a swallow study, here's a picture of Raya during one of hers:
Ok, not the most helpful picture but the surface to her right (on the left of the picture) is the x-ray table turned up on its side. The camera is on her left (right of the picture), I stood facing her in the exact spot I took the picture from, and the video screen is behind me and to the left of the picture.
We started with ultra thin barium, which is the consistency of water. She grabbed the bottle out of my hand and started chugging away. She swallowed fine for about 3 or 4 swallows and then I saw the first little bit of barium go down the wrong way. I think I let out an audible groan at that point because I knew it was not good. Before I could even finish saying, "That was an aspiration, wasn't it." she did it again. And again. At least she coughed a couple times. The radiologist was dictating notes to his tech as Piper drank the barium, and I had to fight back tears as I watched her aspirate again and again on the screen. I didn't swear though, which is what I also felt like doing. 

They had me take the bottle from her. She did NOT want to give it up! I handed it back to the speech therapist and she dumped it out and poured in the next consistency, which was "half-nectar". I handed the bottle back to Piper and she happily drank it. We watched on the screen as she aspirated the half-nectar consistency about 3 times in a row. She never coughed that time. That means her body was not trying to protect itself by coughing to clear the liquids out of her airway, and that is bad. *more swear words*

Once again, I had to pry the bottle out of her little hands. That child has the most non-discriminating taste buds of anyone I know. The speech therapist switched to nectar consistency and Piper gladly took the bottle back from me. This was the only point during the study that I got nervous. Nectar consistency is not a huge adjustment from not thickening, but honey is. I know there are kids who live off of honey consistency thickened liquids, but I watched the screen feeling like nectar vs honey could be the difference between a kid who continues to drink liquids by mouth and one who needs a tube for liquids. To my great relief, there was a noticeable difference in how she was able to swallow with the nectar thick barium vs the half nectar and ultra thin. It went right where it was supposed to go. 

After that, they handed me the cup of pudding thick barium and Piper's spoon. I moved the spoon toward her mouth thinking that she would pull the bottle of barium out of her mouth when she saw it coming but she did not. She just sucked harder on the bottle, like her brain was confused and couldn't get her mouth and hands to do what she wanted them to. I pried the bottle out of her hand while she screamed at me, and then cried her little brokenhearted cry. I fed her a couple of spoonfuls of the barium and she gladly ate them and stopped crying. Thankfully, the pudding thick barium went down great as well, meaning that she is safe to continue eating pureed and mashed food. After that, we moved on to the barium cookie. I gave her a small chunk to eat and she swallowed it pretty well. I gave her another chunk and that kind of pooled in her throat before it went down but none of it went where it wasn't supposed to, so she is safe to continue eating solids as well. She insisted on finishing the last piece of the cookie even though we were done at that point. I have never seen a kid so enthusiastic about drinking barium, nor have I ever seen a kid get so upset about having it taken away! If there is ever a zombie apocalypse and barium is the only edible substance left on Earth, Piper will be okay.

So where does this leave us? It means we are thickening her liquids for 3-4 months to nectar consistency since she is able to swallow that safely, and then we will repeat the swallow study to see if she has improved. How am I taking it? Pretty well, I think. Right after the MBS, I was torn between being sad that she failed it and wanting to shout "I told you so!!" from the rooftops. I'm not crazy!! I was RIGHT, although I certainly did not anticipate Piper's swallow study being worse than Raya's worst one but it was. (ouch, seeing that in writing stings.)

Honestly, I think we have the best case scenario though. Since Piper never nursed, I have been pumping and bottle feeding all this time, so throwing a little thickener into her bottle is no big deal. We don't have to try and convince an exclusively breastfeeding baby to take a bottle of thickened milk or formula, and that would be a MUCH bigger challenge. I may be wrong about this, but I really think that what saved our bacon is the fact that she has been on breastmilk all this time and not formula. I am convinced that if she had been aspirating formula all her life instead of breastmilk, she would have had multiple aspiration pneumonias and probably would have a feeding tube by now. I might be tooting my own horn a little bit but mostly I am just grateful that I am still able to pump and feed her breastmilk at 15 months. I never imagined I'd pump that long but dairy makes her sick and I limit the amount of soy my kids get, so if she wasn't on breastmilk still, I'm not sure what I'd be giving her. 

So far, she's handling the change well. I think she was annoyed the first day because it takes her longer to drink her bottle and she kept pulling it out of her mouth and looking at it like, "What the heck is wrong with this thing?!" She's getting used to it though. We just happened to have a few packets of thickener laying around and one of our friends had a couple extra jugs of it that we were able to get, so that will be enough to keep us going for a while. I used to have several boxes of it but I gave it all away, so I was grateful that someone was able to give us some of theirs. 

I wouldn't be me if I didn't have some little nagging anxiety in the back of my mind wondering if this dysphagia is just a fluke or if it's a symptom of something bigger. For now, we're just counting our blessings. I have to say that it was SO STINKIN' AWESOME to go in, do a test, have it show a problem, and know what to do to treat the problem. It was a nice change from how testing almost always goes with Raya! 

Well, I've rambled on long enough but I felt like sharing a bit more of Piper's story now that there's more to tell. I sure do love this girl!


Wednesday, May 27, 2015

The last week of school

Things got so crazy that I didn't really mention much about the last couple weeks of school. Monday the 18th started out with an 8:30 am IEP meeting to go over Raya's kindergarten IEP. I was not as nervous going into that one as I had been going into the one before that because going into the IEP meeting, I at least knew she was GETTING an IEP. The meeting before, I had come prepared to argue my case for why she needed one and thankfully, didn't have to. It definitely helped having Donny with me at the IEP meeting too. No matter how many times I hear (and tell myself) that it's not us against them in IEP meetings, it still feels that way, so it was nice to have someone else on Team Us. Piper came too and she was very well behaved.

I still haven't read the whole IEP and I'm not going to until I'm good and ready. The most important thing is that the school recognized the needs that I explained to them and decided that Raya needs to have an aide for kindergarten. It will take some time to get everyone into a routine and train her aide (who has yet to be hired) but I am finally feeling comfortable with sending her to school for longer than 3 hours at a time. Her aide will assist with toileting at whatever level she needs assistance, sit with her in the cafeteria, take care of her feeding pump in the classroom, and be with her on the playground to keep her from overheating and from pulling her tube out. I walked out of the meeting breathing a huge sigh of relief and feeling like I can finally feel okay about sending her to school.

The rest of the day after the IEP meeting was incredibly productive. It was probably the most productive day we've had in a long time. After we got done at the meeting, I put Piper in bed for a nap until it was time to pick up Raya and Donny went to apply for a passport. After that, we took my car in to get desperately needed new tires, and to Costco. We grabbed some food on the way home and then I took Raya to the seating clinic to pick up her beautiful new medical stroller. Truth be told, I've been a little self-conscious about the fact that we got her one because to see her run around, it would be difficult for most people to understand why she needs one. Suffice it to say that there are times when she feels like crap and we still have to go places, or we're out and about and she gets too tired to keep walking, or her stomach hurts, or she starts to get too hot, or we have to go somewhere at night after the time when she needs her sleep meds (which we give on schedule regardless of where we are and what we're doing), so yeah. She is mostly able-bodied but she is too big for me to carry when she runs out of steam. We waited for 4 whole months from the time we ordered it so it was nice to finally have it come in. It is beautiful and it will be the last stroller she'll ever need. The weight limit is something like 100 lbs and it could easily fit a small teenager. It's pink and she loves it!

After I got back from picking up the stroller, we went and picked up my car from the tire place. I knew my old tires were awful and needed replaced but holy smokes, new tires feel SOOOO good! I got home from that just in time for the home health rep to come and exchange the crappy inaccurate feeding pump that had made Raya sick over the weekend by running all day without actually feeding her. Go figure, the new one did the exact same thing that night. It's so strange that we seem to have that problem around this time every year. I can't help but think it's related to the change in weather but in 5+ years, I haven't nailed it down yet.

That was one exhausting day but we got so much done! The next day was a little less busy. We had therapy and a little bit of down time to get ready for the next day. Raya's last day of school was Wednesday the 20th, and without realizing that was her last day, I had scheduled a well check for Piper for that day. She was supposed to have a swallow study done the day before but she had caught the cough that I had and I didn't want to do a swallow study when she was sick so we had rescheduled it. I never trust the length measurements when they just stretch the kid out and mark on the paper with a pen because it totally depends on the angle they hold the pen at, but girlfriend is long and skinny.
At 15 months, we're still waiting for her to decide she wants to walk and talk. She babbles a lot and is learning some new sounds, but she doesn't use any purposeful language yet. The closest she has come is saying "Hi" but she doesn't actually say hi to people, she just sometimes says it at random. I think she meowed yesterday when she picked up Raya's beanie baby cat though. Anyway, she is 19 lbs and 1 oz, so she's on the lean side. I can't remember what percentile that put her in but it was between the 10th and 25th, I think. I'm good with that. It's right on target for one of ours. We aren't concerned about the fact that she's not walking or talking yet either. Like the pediatrician put it, development happens on a bell curve. Somebody has to be on the slower side of the bell curve or else it wouldn't be a curve. Piper is just taking one for the team, I guess. :) She has always done things at a slower pace but not so slow that we're concerned, so she's just continuing her trend. We have rescheduled the swallow study a couple times now and I was considering rescheduling it again since she is still not completely over the cough, but after discussing it with some very smart mama friends, I decided to go ahead with it this time. She is teething right now, as we discovered at her well check. She's getting 4 molars all at once and finally got the 4th bottom tooth in the front. She's had 3 down there forEVER and the 4th one finally popped through. So lots of extra slobber makes it harder to get over the junkiness. In addition, swallowing incorrectly can make junkiness worse, so I think it's best to go ahead with the swallow study and see if they can see anything dysfunctional. She vomited for no good reason this afternoon and threw up chunks of strawberries she had eaten 5 hours earlier so that's not good either.

Moving on... Wednesday was Raya's last day of school so we had a tearful goodbye with her sweet and wonderful teacher and then had an awards ceremony in Cole's class that afternoon. Raya was really crabby but she liked hanging out with Cole at his desk during the awards and felt pretty special when she got to have one of the juice pouches at the end. She only had a sip or two but she LOVES when she can have what everybody else is having.

Thursday, we had an awards assembly for the 6th graders. I don't know what is wrong with the ventilation system in that room but it was hot and smelly as heck and the girls were not very patient. They were much happier when we got to come out of the room and they could actually see Ashtyn. It was her last event as an elementary schooler and now she is a big old middle schooler. Where did my baby go?!

I had given the kids the option of riding home with me or riding the bus and like every year before, they opted for the bus. Well, okay then! I anticipated some tears when they got off the bus because it happens every year, so the girls and I met them at the bus stop just in case they needed some lovin'. I think this was the least emotional they've been. They were more depressed on Wednesday. A couple of them got a little misty when they got off the bus and hugged me but they snapped out of it pretty quickly and were all smiles for the picture I took.

We came home and the kids had a snack and changed out of their school uniforms. For Ashtyn, it was the last time ever! No uniforms in middle school! She's pretty excited about that. After everybody was ready, we headed out to play for the afternoon. It was fun but I learned that sometimes, taking kids who are bummed about school being out for the summer, (i.e. miss their friends, sad they won't see their teachers again, etc.) to a place that requires patience and not getting upset when things don't go as well as you want them to is not a great combo.
(disclaimer: it was bright outside and I caught Ashtyn mid-blink)
We also ended up in a bay that was completely open on both sides, so it was very windy. Wind doesn't make for very good golf when you're already crappy golfers. I hit a couple of good ones and beat all the kids so that's all that really matters, right?
Left-handed boy living in a right-handed world
I was even nice enough to get them a little pizza to snack on.
Thankfully I had a couple of Dum-Dums in the diaper bag for Raya and Piper to snack on because they couldn't have the pizza and go figure, Raya actually wanted to eat something.

I think my favorite moment was at the beginning when our host showed us to our bay and then went to get the left handed golf clubs for Cole. He came back while I was getting all the kids organized and reminding them of the instructions. After he went over the safety rules and all of that, he offered to take a picture for us and then he said, "I just have to ask you, what's your secret? You brought 5 kids here by yourself!" I laughed and told him that the secret was that they're good kids. It was a nice compliment. They ARE good kids and I do enjoy spending time with them. There are times when I wouldn't attempt things like this by myself but the stars aligned that day and it worked for us.
Pretty darn good picture too! (and we don't look related to each other at all, do we)

I wanted to get the summer off to a good start so we spent the morning on Friday doing yard work. We trimmed all of the bushes in the front yard and bagged the clippings. It was an unseasonably comfortable day so it wasn't bad at all. The kids were pretty cooperative and helpful and we got it done pretty quickly.

Friday night, we grilled hamburgers and had corn on the cob. (or cob-on-the-corn according to Raya) There is a lot of negativity in the food world about corn these days, but for our family, corn is a huge blessing. It's a small and simple thing but everyone gets excited to have corn on the cob because ALL of us can eat it. We buy it in multiples of 7 because all 7 of us can eat it and it makes Raya so happy. The kids decided to eat outside. They crack me up when they decide to all sit on the tiny little porch by the door to the garage but I love when they do things like this. I love seeing them all happy together.

Saturday, one of my dear friends from high school was in town visiting some of her friends and they invited me to join them at the outlet mall that afternoon. It was so much fun seeing my friend and meeting her friends! Going clothes shopping is so much more pleasant when I have other people there telling me what to buy.

That evening, we decided to take the kids out for frozen yogurt to reward them for working hard in school and helping with the yard work and house work. I asked the kids working there if they knew which flavors were dairy-free (since their website said they had dairy-free flavors) and they told me all of them were dairy-free. Um, no. No they're not. They called the manager for me, who also did not know, and so the manager called the owners. After several minutes and a couple phone calls, they came back and said that the 4 fruit sorbet flavors were the only dairy-free ones. That's what I had assumed but I wanted to make sure before I fed any to my dairy-allergic and dairy protein intolerant girls. Once that was all cleared up, we sat down and had our dessert. It was another one of those awesome moments where there was something that all 7 of us could eat.
(Piper was on the floor in her car seat) I ended up feeding most of mine to Piper because the dairy-free flavors were lame. If I'm going to eat frozen yogurt, I want the cake batter flavor and the salted caramel flavor, not the fruity sorbets. *sigh* It's okay though, my dairy abstinence is for a good cause and Piper is a much healthier baby because of it so it's a small price to pay.

It was a whirlwind of a weekend but it was a really nice weekend. I sure do love and appreciate my little family!















Tuesday, May 26, 2015

Preschool...*sniff sniff*...is...*sniff sniff*...OVER! *sniff sniff*

How did this happen?! School is out for the summer and my baby is all grown up! Well, not ALL grown up but MUCH more grown up than I'd like her to be and it has gone by much too fast! Raya's last day of preschool was last Wednesday. Here's a side-by-side comparison of her first and last day of preschool. Her first day was a couple days after her 3rd birthday. She looks so little then and so old now!
Her big sister somehow talked her into letting her do a cute little braid thing with her hair instead of the ever-present ponytail. I had to take it out and redo it before we went to school and she took it out as soon as she got home, but it was cute while it lasted. I dropped her off at school and made good use of her last day of preschool by taking Piper in for her 15 month well check while Raya was at school. Then I drove through my favorite breakfast joint and got myself some French toast, put Piper in bed for a quick nap, and relished my last bit of peace and quiet until school starts again. It was heavenly but short-lived.

I walked in the door of Raya's classroom and quickly whisked her out into the hallway to sign the cards I had gotten for her teacher and aide. When we went back inside, Raya ran to her teacher, handed her the card, and hugged her. Then her teacher and I both exchanged a teary-eyed glance and a hug. We are going to miss her SO MUCH! There are just no words to explain how much she has helped Raya grow and develop in the last 2 years. She has been someone I could trust when I wasn't sure who was on my side, and she has gone above and beyond to help Raya succeed. She is as ready for kindergarten as she possibly could be. I canNOT imagine how she ever could have been ready for kindergarten if she had not been able to do {almost} 3 years of early intervention preschool. It's been more than academics for her. MUCH more. The academics were never really a concern for me. It was pretty much every other aspect of school that made me worry for her, and the last 2 years of preschool have definitely prepared her for "the real world" of kindergarten.

We now have a copy of her kindergarten IEP in hand. It was handed to me on the way out of the 6th grade awards assembly on Thursday. I haven't read it yet. Mentally, I'm just worn out with all this IEP stuff and I need a break from thinking about it. The school staff is gone for the next 2 months anyway, so nothing can be changed right now. I'll leave it sitting on my desk for a couple weeks and then look at it with a refreshed mind and clear head. I already saw something in the second paragraph that I want reworded because it is not accurate, so I imagine there will be other things as well. Even so, we feel like her biggest needs have been acknowledged and there is a plan in place to meet those needs. I can't put into words how gratifying it was to hear them say they are getting her an aide after dealing with all of the comments from people who told me she wouldn't get one and that the school doesn't have the staff to deal with what I told them her needs were. (it wasn't just school staff saying those things either, it was friends and family. and her doctor.)

I am trying really hard to be present and enjoy the last couple months with her before she starts elementary school, and also trying to not get sad about how fast the last 5 years have gone by. It's so great to see how well she is doing, and how much she has exceeded the expectations of everyone who worked with her the first couple of years when things were so much worse with her health and we really didn't know what she would be like by now. She is an amazing kid!






Friday, May 22, 2015

Around and Into the Unknown: A Book Review

Today, I have a little something special to share. My good friend and Feeding Tube Awareness Foundation colleague, Hillary Savoie, has recently written a short story called Around and Into the Unknown. Hillary is maman extraordinaire to Esmé, founder of The Cute Syndrome (a blog and a medical research fundraising organization), Feeding Tube Awareness Foundation staff member, and holds a PhD. She is an incredible woman and I thought it would be fun to have her share a little more about herself, her daughter, and her book.



- First, can you tell me a little bit about Esmé and The Cute Syndrome?
My daughter Esmé was born with a number of challenges--some of which, like her low tone and poor swallowing reflexes, were present at birth. Others developed as she grew, for example, she began having seizures when she was around 9 months old. Esmé is now almost 4 1/2. She has severe developmental delays, epilepsy, failure to thrive, and a movement disorder. She is tube-fed, non-verbal, and non-ambulatory. She is also adorable super goofy and very clever! 

The Cute Syndrome is something that my friend Dana came up with early on when we were told Esmé likely had a genetic syndrome of some sort. Dana said, "Yeah, Esmé has a syndrome, she has the Cute Syndrome!" And since Esmé has remained, essentially, undiagnosed all this time, the name sort of stuck as short hand for what Esmé "had." I always liked the name because syndrome names can feel so scary and clinical, I loved that we had a positive spin on categorizing Esmé's disorder in some way with one of her most defining features: her cuteness!

I started blogging about life with Esmé in 2012 when her seizures were totally out of control and I had taken a leave from my doctorate program and teaching position in order to stay home with her. At the time we were spending most of our time in bed dealing with seizure clusters, vomiting, and lethargy. Naturally, I called the blog The Cute Syndrome. A year and a half later, when I started the foundation to fund medical research for rare genetic epilepsies, like PCDH19 and SCN8A, and related disorders, the blog lent its name to the foundation.


- Tell me about your story "Around and Into the Unknown," what is it about?

Around and Into the Unknown is about the journey we've been on since we first had the indication that Esmé might have some sort of medical or genetic differences--at our 20 week ultrasound. For us the process has been extremely difficult, and even after almost five years of testing, we still don't really know what Esmé "has." Her genetics in this respect are unclear. We now know that she has two mutations in genes associated with infantile epilepsy and many of her other symptoms--PCDH19 Epilepsy and SCN8A Epilepsy--but there is some confusion about whether these genetic "should" mutations cause symptoms in her or not. So, we are working with researchers to dig deeper into her genes to see what else might be causing her symptoms.

More than that, though, I think the story is about trying to understand what it means to have a genetic mutation. We all have mutations in our genes--these lead to all kinds of human variation, like green eyes, increased susceptibility to certain diseases, behavioral differences. Culturally we tend to see genetic differences like Esmé's as something else all together--when really they represent an end of a spectrum of genetics that we are all on. Yes, in Esmé's case her genetics cause changes that are obviously severe, but the mutations are not fundamentally all that different than what is hiding in all of our DNA.

- You published this story as part of a travel series - can you tell us how that came to be?

It was actually due to an accident! My friend Channing Rodman sent me a link to a call for the travel series, 6 of 1 Travel, at my publisher Ponies + Horses Books, but she'd intended to send the link to their memoir series, 6 of 1 Memoir, call instead. When I saw the travel series link I asked her if she had a particular story in mind for me to write. Not realizing why I was confused, she said that yes, you wanted me to write a story about "how genetic testing is not the linear route to an answer we think it is." It sounded like she was talking about a journey of sorts--traveling into Esmé's genes. By the time we'd realized the confusion about the link, the theme was already set! The story just came together so nicely all through an accident!

Interestingly, I later pitched a second story to Ponies + Horses for their 6 of 1 Memoir, which they also accepted. So, my second short book with them, Whoosh, will be out later this summer. It will be available for pre-order in the next week or so. 


- Why did you want to write this story?

I really want people to understand that genetics is still an emerging science. While we know so much more than we did even a few years ago, we are still really far from finding answers for many people who are struggling with disorders associated with genes that have yet to be "discovered" in humans, or disorders that are caused by multiple genes interacting, or disorders that are altered by both genetic and environmental factors. It seems like people really struggle to understand how we can have a child who remains undiagnosed despite our best efforts...and I wanted to help explain how that can be. I also wanted to write something about the emotional impact of these kinds of quests. This is something that I think a lot of clinicians who work with kids like Esmé don't understand--it is a hard journey. Finding answers is hard. Not finding answers is hard...and it is all difficult in ways that they may not anticipate.


- How's Esme doing? 

Esmé is doing really well at the moment. She is making some amazing gains. Last year she started being able to pull herself up to stand with support. She still needs support to stand by she is exploring the edges of her balance in ways that make me think she will walk some day. We have also recently learned that she can read a number of familiar words. Since she is currently non-verbal, we are attempting to use this skill to better communicate with her, which is really very exciting!


- What are you working on now? 

At the moment I am completing edits on the next book "Whoosh" which will be coming out later this summer. Whoosh is about when Esmé experienced cardiac and respiratory arrest as an infant. It is a story I have been working on writing in some form or another in the four years since it happened. I think I've only just now been ready to write it. I am working on another similar length piece about Esmé's heart function, and I am about to dive into a piece about her communication abilities. Also, I am writing on my blog The Cute Syndrome about once a week...I see it as a place to test out ideas for longer pieces.

- What are your coping techniques for dealing with the stress of the unknowns you face with Esmé?
For me the strategy has always been about openness and honesty about my feelings through writing. It is one of the reasons I started blogging about Esmé...I wanted my friends and family to know what I was thinking about, what I was feeling. It seems like people often have the impression that people going through life with medically fragile/complex children are just somehow stronger than other people or that our children's lives are somehow pitiable--so it seemed to me to be so important to let people know all sides of the story--at least my version of it. 

I have also found tremendous help coping through service. Starting the Cute Syndrome Foundation to fund medical research for the rare disorders that we suspect may be part of Esmé's genetic picture helped me feel more in control of her fate--even if none of the research we've helped fund will benefit her directly, it pushes the science around rare epilepsies forward--and will help many children like her. Of course not everyone will have the time or inclination to take on a project like that...but other service is possible as well. I have had a stint volunteering with the Feeding Tube Awareness Foundation and been active in various groups to offer helpful advice to people in similar situations. 

Finally, I must say how much it has meant to me to find other parents, like you Brandis, online...people who I may never meet, but who are deeply involved in our lives. What is interesting is that I always thought that I would find my support network through being diagnosed. But for me that has not been the case--I have found people online whose children are very different from mine--Raya being one such child--but who share a kind of philosophy of life with a complex kid and absurd sense of humor that synchs with my own life. That is where I have found what I needed most to get through.--

And if that wasn't cool enough, here's a cool little video to help introduce Hillary and Esmé:

Aren't they awesome?! 
One of the greatest blessings that has come out of all we've been through with Raya is the association with other moms who are navigating a similar life. There is just something special about being able to have a conversation with someone else who is familiar with all of the medical lingo and understands the frustrations and joys of life with a medically complex child. Hillary's story is a raw, unapologetically real account of the process her family went through to seek out a diagnosis for her beautiful daughter, Esmé. At times as I was reading it, I couldn't help but laugh at how well Hillary described the exact thoughts I have had as we've gone through a similar process with Raya. This story is a great read for anyone who has ever been through the process of genetic testing, has not yet started the process of genetic testing but will be, and really just anybody who has a complex child in his or her life. If you want to better understand what it's like, Hillary will explain it to you! (Fair warning, if you are easily offended by the "f" word, you might have to close your eyes a few times but let's be real, sometimes the process of finding a diagnosis brings out the swear words in all of us.) I loved Around and Into the Unknown (available for purchase on Amazon) and I can't wait to see what Hillary comes out with next!

*This post contains affiliate links.

Monday, May 18, 2015

Aaaaand...exhale...

Today was the most productive day evah. For real. I should back up though. I have been sick for the last 12 days, the first 8 of which were miserable. My only symptoms were a fever that made me feel like I had been hit by a truck (but also came down with ibuprofen, often fooling me into thinking I was better) and a dry, unproductive cough. I'm pretty sure that if I had been able to just lay around and do nothing for the first couple of days, I would have gotten over it pretty quickly, but YEAH RIGHT! I have 5 kids and it's May. Ain't nobody got time fo' dat. I finally hauled my sick self to the doctor last Wednesday afternoon. I had to cancel respite for the whole week last week, which really stunk because she's out all week this week too. Her son is graduating this week and I didn't want to risk having her catch germs. She was sick quite a bit in April with something very much like what I had, so she didn't want to risk catching anything.

Anywhoo, I dragged my sick self to the doctor last Wednesday with both of the little girls in tow. That was super fun. Raya is a pretty good patient but she really stinks as a tag-along. She's so impatient and I think she actually gets jealous when the doctor isn't interested in seeing her. It's totally understandable and kind of funny. I got swabbed for the flu, which was not funny. There's nothing funny about having a stick jammed up your nose. That was negative though, which we expected because the flu doesn't last 7 days. That left 2 other options: walking pneumonia or a secondary bacterial infection that was probably a result of whatever I'd had earlier in the week (like maybe flu). My lungs sounded awesome (really, no sarcasm. clear as day) so she was kind of at a loss, and did what all doctors do when they're at a loss: prescribe 5 days of azithromycin and say, "come back if it doesn't work." I finished the 5 days last night and although the cough isn't completely gone, it's most definitely better and I haven't had a fever since Thursday so I'm calling it a win.

Wednesday night was lousy because both schools had their big end-of-the-year events at the same exact time, which meant I had to choose between the kids. Donny was still at work so we couldn't tag team. I ended up dropping the older kids off at a friend's house and they got a ride to their school while I took Raya to hers for her little music performance.

Speaking of wins, today was kind of a big fat win. After feeling like I fell short on EVERYTHING since I got sick on the 7th, it was nice to finally have a good great day. Friday was kind of a low point. I had really REALLY wanted to go to Raya's water day at school but Piper was still coughing and I didn't have a babysitter so I couldn't do that. I had also really REEEEALLY wanted to take the little girls and meet Kaida's class at the zoo on their field trip but I was too sick to go traipsing around the zoo all afternoon so I couldn't. Instead, I was running around with 2 crabby, tired girls to pick up the medical paperwork that had to be signed by 2 of her doctors before the IEP meeting today and got a phone call from one of the doctors. At our last visit with her, she had said that if I needed a letter for the school, to let her know what I needed it to say and she would write it. The day I brought in the paperwork, I emailed her and let her know what I needed her to put in the letter. It wasn't anything demanding, just a statement of what areas Raya needs support in at school. She called me on Friday to tell me that she couldn't write what I wanted her to write because it was asking too much of the school, they wouldn't give it to me anyway, and she can't ask them to provide that level of care, etc. I tried to explain that they were already considering providing her an aide and that I only asked for those things in writing that would validate the decision to provide the aide, but I was kind of caught off guard and couldn't really get the right words out. She wasn't really listening to me anyway, and I felt like crap and could only get 3-4 words out at a time before having a coughing fit. Then she asked me if I was okay and I couldn't stop the tears from coming. I don't know if she could tell or not because of my scratchy voice and coughing but I didn't really care at that point if she could tell or not. It was really disappointing. I really wanted to go into the IEP meeting feeling like she had my back on what I was asking for, and instead, she was looking at the situation backwards. At the end of the call she told me that if, after the meeting, there was anything the school needed from her, to let her know and she would write it for me. Riiiiight. Because that worked out so well for me before. I stayed as polite as I possibly could and just said that since the school was already considering providing an aide, I hoped they would just go ahead and give her one so the letter would be a moot point anyway.

Fast forward to today, we had our first official elementary school IEP meeting and I'm happy to report that no tears were shed and no voices were raised. It went beautifully, and we are feeling so much better about sending Raya to kindergarten when school starts. The school staff decided that Raya would benefit from the assistance of a health aide throughout the school day. She will have an aide to help her with using the bathroom on a consistent schedule, to help with tube feeds so that she doesn't have to always be pulled out of class, and to be with her during lunch and recess. She will also be leaving school at 1:30 every afternoon until the weather cools down. School starts at the end of July this year, when the temperatures will still be in the 110-115 range, and the combination of the heat and the shock of being there from 8-3, 5 days a week would be too much for her. There are other things that were not addressed (or at least not discussed in the meeting) that I would still like to address, but this was the biggest thing and I think/hope the rest of it will fall into place since her most significant needs will be met. I haven't gotten my written copy yet but I should have it tomorrow, and we can always amend the IEP in the fall if we need to. Overall, I am happy with how it went.

After the IEP meeting, we went home and Donny went to send in his passport application while I waited for time to pick Raya up. Once we had finished those errands, we decided to drop my car off to get new tires ($$$) and went to Costco for diapers. We got some lunch and made it home just in time to drop off Donny and Piper so Raya and I could drive an hour to pick up her beautiful new stroller that FINALLY came. Her ped wrote the script for it in December or January and we ordered it mid-January. They said it would be in after about 2 months. I'm not complaining though because I'm just really grateful to have it. It's awesome. We got back home in time to go pick up my car with its 4 brand spankin' new tires, and then made it back home in time for the supply company to come exchange Raya's malfunctioning feeding pump. Long story short, it ran all day Saturday without actually feeding her. She went to a playdate at a friend's house, and by the time she got home, she was sad and weepy, tired, hungry, and felt sick to her stomach when she started to eat. She even fell asleep at the kitchen table, which NEVER happens. Right after that, I opened up the backpack and realized that it had quite a bit more formula in it than it should have at that point and I'm out of patience for stuff like that so I called today and asked for an exchange. They brought it at 5pm on the dot, right after we got back from picking up my car with the pretty new tires.

That was about all the productivity I could stand for one day. We threw together a quick pasta dinner with jarred spaghetti sauce and frozen garlic toast and then Donny went to the evening martial arts class and I sent the kids off to bed and flopped down on the couch instead of going to the grocery store. It was a pretty great day.

Friday, May 15, 2015

Just a meme for a craptastic Friday

Today is one of those days where nothing has gone my way and it's just a giant ball of frustration. Rather than complain, which I really feel like doing, I decided I'd keep it simple and share this meme that I threw together. It's the image that pops into my head every single time I'm refilling Raya's pump bag and have to tell her, "Raya, I'm pouring! Hold still!" And if you were not a child of the 90s and don't recognize the reference, please just ignore me and go on your merry way and let me laugh at my lame joke.




Saturday, May 9, 2015

Pandora's Box

There aren't many stones unturned in the quest to find a diagnosis for Raya. Sure, we have a list of diagnoses and symptoms masquerading as diagnoses, but we have never found that one thing. The one that would tie a nice, neat bow around it all. Odd as it may seem, I have always envied the people who had a name for what ails their children. When someone asks them, "What does he/she have?" they can respond with a clear and concise answer that ends in "syndrome" or "disease". Now this is not to say that I wish a syndrome or disease on my child, but when there is a laundry list of medical problems, having a nice, neat little name for it (whatever "it" is) would beat the heck out of my usual babbling of "Well, she has a lot of digestive issues and CP and a chromosomal thing that we don't know anything about and might mean absolutely nothing..." You'd think by now I'd have a well-rehearsed answer for that question but it still comes out different every time.
It was around this time 5 years ago that we started down the road of neurological and genetic testing. Raya had her first MRI at just shy of 5 months old.
 
The neurologist ordered a barrage of blood tests around that same time, and aside from some elevated lactic acid and pyruvate levels, everything came back negative. No Fragile X, no chromosomal disorders (uhhhh...except when they repeated the microarray later on and found the microduplication on chromo 18...), and no mitochondrial disease markers.

Oh, but wait.

I found out 5 years later, at our genetics appointment in February, that the mitochondrial DNA labs were never done. They were ordered. I'm pretty sure they were ordered more than once. We did blood draws for so many labs that I had always just assumed the mtDNA and nucDNA labs were completed too. Turns out they were never done. We never got any denial letters from insurance for them, but insurance denial would have been the only reason for the lab work to not have been done. Trying to get insurance approval on genetic testing is like banging your head against a brick wall. We were also supposed to have done parental testing for the chromosomal duplication, but insurance would not approve it. With nearly any other area of medicine, the doctor's office staff would be the ones who seek out insurance approval but not genetics. I was told that I would have to do the legwork myself or we could pay out of pocket, and who can foot an $18,000 bill for a couple of genetic tests?! So we never had the parental testing done, which may have helped us determine whether Raya's duplication is significant to her medical conditions or not.
At our last visit with the geneticist a couple years ago, we talked about mito testing but agreed that muscle biopsy would be much too invasive and really not appropriate given how much Raya's condition had improved by that point in time, so we opted not to do it. I had decided we wouldn't really need to bother going back to genetics, but then we had more labs that were off when we saw the neurologist last fall. She discussed the results with the geneticist and I got a phone call saying that he wanted to see us at his next available appointment. In 6 months. (super urgent, right?) I got lucky and got us in at the 4 month mark.
After waiting 4 months for our appointment and trying not to stress about why the geneticist needed to see us, the appointment was kind of a let-down. He didn't really know why we were there. (gah. because you told the neurologist to send us!) After scrolling through years' worth of her lab results and breaking policy by printing me a whole stack of them instead of making me order them myself through medical records, he said he found what had prompted the neuro to send us to him again and that it was the same things that had always been a little off when we had run them. Then he brought up mitochondrial DNA and nuclear DNA testing, and that was when I found out that the tests had never actually happened. He asked if we wanted to try and have them done and I said yes, so they sent off the order. It was denied by both insurances and we were again presented with the comical option of paying the $21,000 tab ourselves. Thankfully, one of the local mito moms that I greatly admire pointed me in the direction of a different lab and said it was more likely to give us the information we are looking for than what they had ordered anyway. The lab also has a financial assistance program that I didn't think we'd qualify for but we DID, and it reduced our OOP cost to $50. The insurance approval happened really fast, the financial assistance program approval happened in about 10 minutes, and the collection kit was waiting for me in the mailbox when I dragged my sick self out there yesterday. (fever of 103-105. happy mother's day to me.) Having it happen so fast was really exciting and I was feeling so good about finally being able to have this done!

Until I opened the envelope and the reality of it hit me. Maybe it's the fever talking, but I got a little misty-eyed. It's a little genetic Pandora's Box. Schrodinger's saliva tube. What if?? What if the results come back and once again tell us nothing? I mean, yeah, it would be REALLY awesome to rule out mito, but what if we can't rule out mito? What if I just don't want to know? I do but I don't. It's a feeling akin to finding out the gender of baby #3 when we already had a boy and a girl. I thought about how fun it would be to not find out and let it be a surprise. I waffled back and forth for months until it was time for the anatomy scan. Ultimately my need to know won out, and so it is with the mito testing. I don't want to know but we need to know. Now the fun part will be collecting the much larger than expected amount of saliva required for the test from my orally-aversive 5 year old. I explained the process to her today and told her we would do it tomorrow, and that it won't hurt and she can have one of her special treats after. I'll send it off in the mail on Monday and then we will wait and wonder. Hopefully the results will be quick just like everything else has been so we won't have to wait too long.

Thursday, May 7, 2015

Ok, I can breathe again.

The big yucky meeting is over. Yesterday I met with the MET (multidisciplinary evaluation team) to go over the results of Raya's evaluations, which were to determine whether or not she will qualify for an IEP going into kindergarten. To make a long story short and avoid the annoying suspense that I've been living with for the last 2 weeks, I will just come right out and say that Raya WILL be on an IEP going into kindergarten. (cue HUGE sigh of relief)

I did not know until the end of the meeting that she was going to have an IEP. First, they had to go over all the results of the evaluations with me. Aside from the very long days in between the evaluation and the results meeting, that is the most nerve-wracking part. On one hand, you want to hear good things about how your child is doing, but on the other hand, you want them to score low enough to qualify for the services you know they need. In past meetings, I've cringed a bit when she has been within the average range on things. The results of these school evaluations have never been a very accurate picture of Raya from a social, emotional, and behavioral standpoint. This time, it was music to my ears to hear the results of her academic and cognitive evaluations. She is one smart little cookie. When the school psychologist was doing the academic & cognitive evals a couple weeks ago, she kept telling me, "She is doing great! I have 2nd graders who can't even do some of these math problems or answer some of these questions!" I am relieved to know that she does have some natural ability with the academic side because I anticipate that there may be difficulties with her attention span and with getting her to do homework. Much credit goes to her phenomenal preschool teacher and aide too though. They are wonderful and have done so much for Raya to get her where she is.

The part I did not like hearing was how vastly different the school & home evaluations were in the adaptive behavior and social areas. I totally understand that her teacher does not see most (or any) of the problem behaviors we see outside of school, but it really frustrates me that the evaluation does not take into account the fact that she is only with her teacher for 9 hours a week and she is with me for the other 159 hours of the week. That is an extremely inaccurate representation of her adaptive level of functioning. I don't know if the teacher's booklet had the exact same questions that I had, but some of the questions on the evaluation were things that would never apply to school, like "Decides what clothing to wear without help". They don't do that at school, so how would the teacher know? The majority of the questions were things that Raya reacts very differently to in a school setting vs in any other setting. She is at school during her happiest hours of the day when she feels good physically, and she LOVES school. At school, they don't have to make her do things she doesn't like to do. Picking up toys at school is fun because everybody helps. Putting away her own toys at home is hard because she has to do it by herself. At school, even the tasks that are done independently are closely supervised, and the other 20 kids in her class are doing them independently too. She holds herself together well at school and in the mornings, and then kind of falls apart in the afternoon & evening, so it was frustrating to know that those things were not taken into account. I thought maybe they'd just average the teacher's scores with mine or something but they did not. There was an average of about a 30 point difference between the teacher's scores and mine and it does not appear that mine counted for anything at all. Annoying, but I expected it based on conversations with the teacher.

However, thankfully, the team determined that she does qualify for an IEP under the "Other Health Impairment" category (OHI). Had she not qualified for OHI, we would have done a 504 plan instead. I had convinced myself that I could be okay with that as long as the needs I feel she has would be met, but I am so incredibly relieved that they decided on OHI. I can't really put into words why I felt so strongly about an IEP vs a 504, but I did/do and I'm really, really glad we're going this route. She won't be due for a re-evaluation until the end of 2nd grade so this will get her off to a strong start in elementary school.

Now comes the fun part. Gotta write the IEP and get everybody to agree on things. I have to say that after yesterday's meeting (where there were a couple of different people in attendance than the last one) I am feeling MUCH better about the direction we're going in and I really believe that everybody will be able to come to agreement about what's best for Raya and also do-able for the school. And I'd be lying if I said I wasn't super grateful that 2 of my other kids will still be there because if there's an emergency, they can be there for her, if in no other capacity than to hold her hand while she waits for me.

The school year is rapidly coming to an end and it's bittersweet for me. My oldest is finishing up her last couple weeks of elementary school and will officially be a middle schooler, and Raya is graduating from preschool and moving on to elementary school. Both make me want to smile and cry at the same time, for different reasons. I remember in the early days of Raya's tube feeding adventures that I thought she'd only need the tube for a couple weeks. Then a couple months. Then a couple years, and when she was 2 or 3, I told myself that she'd probably be off the tube by the time she went to kindergarten. Oh, how I would love to be able to say that but there are some things in life that are just beyond our control. Instead, she is going to start spreading awareness and educating the new people in her life about life with a feeding tube and showing them that nothing holds her back from doing what she wants to do. ♥
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