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Wednesday, October 31, 2012

Ugly day.

I try to keep a positive spin on things on this blog but also not sugar coat the truth because I want it to be an accurate representation of what it's like raising a child with complex medical issues. In reality, as long as you're dealing with multiple medical providers and insurance companies, SOMEBODY is going to be a thorn in your side. If anyone happens to be looking for warm fuzzies about the special needs life, you should probably stop reading now because this is not it. We have a lot of good days, a few bad days, and some ugly days too and this has been an ugly day. (Don't worry, Raya's fine.)

I had planned on spending my day reading my textbooks, studying course materials to prep for the quizzes I have to take this week, and prepping for the lab I have to conduct this week. I really REALLY needed to spend the day doing that stuff. Instead, once again I have spent the majority of my day trying to untangle insurance and medical provider red tape just so that my child can have one of the medications that allows her to function every day.

Here's the back story. In August, we were notified that our prescription drug insurance coverage(Medco) through our primary insurance (Aetna) was going to start requiring certain medications to be filled through Medco's own mail-order pharmacy. We are allowed 2 retail refills on any of those medications but that's it, and any beyond those 2 "RRAs" (retail refill allowances) would be charged to us out of pocket at a higher cost. Because Raya's medications have to be in liquid form, I was concerned at 1. having them shipped to Arizona when it's 115 degrees outside when I may or may not be home to get them and put them in the refrigerator, and 2. having trouble getting them on time, especially because we can't just abruptly stop these meds. Well, okay, she could survive a few miserable days without her Prilosec, but abruptly discontinuing Neurontin/gabapentin can have life-threatening effects like heart rhythm abnormalities. Because I was uncomfortable with the idea of doing her liquid meds by mail order, I asked a customer service person for an appeal form, which was mailed to me. Somewhere in that process, I found out that the RRA limit only applies to the Neurontin, not the Prilosec, so that was a plus.

Just FYI, Neurontin is an anti-seizure medication that is also used to treat a condition called visceral hyperalgesia, which is one of Raya's diagnoses. This condition causes any sensations within the visceral region (stomach, small & large intestines, etc.) to be perceived by the brain as being exaggerated. Think about how you feel when you have an upset stomach, bloating, or diarrhea and imagine feeling those pains all the time, and that's the best description I can come up with for visceral hyperalgesia. This condition is most likely one of the main causes of the excessive vomiting that she used to have. Without this medication, she would be in pain all day every day.

I took the appeal paperwork to the doctor in August. She filled it out and I mailed it in. A couple weeks later, I got a letter saying they had denied my appeal. Somewhere in there, we moved, so yes, I didn't move as quickly on this as I otherwise could have. When we got the notice of the denial of our request, I was told that I could do a new appeal so that was and still is my plan, but I knew that we would need to do a mail order refill before that could happen. We used our 2nd RRA for the Neurontin earlier this month. When we were down to a little over half a bottle, I called the doctor's office to have them fax the prescription to Medco. That should have been PLENTY of time for them to process a prescription. One of the MAs faxed it in on the 23rd. The next day she called me and asked for our member number because Medco said they didn't have record of Raya in their system so I gave it to her and she gave it to Medco. I had been told by Medco that I'd receive an email to confirm that the prescription was being processed. I realized late on Monday afternoon that I had never gotten an email and we were starting to get low on her Neurontin so first thing Tuesday morning, I called Medco to make sure the prescription was on its way to us.

A lovely woman named Trudy informed me that there was no record of that prescription being processed. (I really do mean it, she was very nice and helpful.) She told me that our doctor's office had never registered their fax number with Medco and as such, Medco could not process or fill the prescription until the doctor's office did that. I took a deep breath and told her that we only had enough to last us until Friday and asked her what we were supposed to do if the doctor's office faxing the prescription to them wasn't good enough. She gave me 2 phone numbers for the doctor's office so they could call in the prescription. I called the doctor's office and left a voice mail for the nurse. She called me back a couple hours later so I could explain the whole situation and then called Medco. They told HER that the claim for the prescription had been denied/not processed because I was appealing to be able to fill it at the retail pharmacy. This was a load of crap because they had already sent the denial letter and I was trying to fill it through their pharmacy like they wanted, so that had NOTHING to do with it. She seemed a little confused and unclear on what I was telling her vs what the Medco rep had told her and mentioned something about denials, which I now believe was in reference to the fact that Medco has been denying payment for this med since at least July anyway, but I'll get back to that in a minute. The nurse called Medco back last night and ordered the prescription. I decided to call this morning and find out what the status was and when it would be arriving.

So that's the back story. Here's today's part of the story. My day started with my phone crapping out on me, which meant that I had to dig out my old falling apart phone and put my sim card in it just so I could communicate with the outside world. Not a good start to the day. While I was phone-less, one of the specialist's offices that I've been trying to get a hold of called and left a message so I called her back. That was a frustrating phone call because she told me that if I want to know whether or not our insurance will cover the genetic testing that the doctor wanted Donny and I to have, I will have to call insurance myself and made excuses for why the doctor's office can't do this like they were supposed to have done back in January. She said that if Raya's labs had been done at a different lab, the lab would do ours for free but the lab we had them done at (which was the in-house lab at the doctor's office) doesn't do parent testing for free and our insurance probably won't want to pay for Raya to have it re-done at a lab that will do parent testing for free. She also told me that they don't have any openings for follow-up visits until at least March, which is better than June like the other clinic where we saw that doctor before told me. Then she transferred me to the scheduler and told me to leave a voice mail so the scheduler would call me back. That has not happened yet today. So that was aggravating incidents #1 & 2 for the day.

After that, I called Medco to make sure Raya's prescription was going to get here before we run out on Friday. The lady I spoke to said that the prescription was going to ship tomorrow and would take 3-5 days to get here. I told her that wasn't going to work because Medco's mistakes had delayed the process and we were going to run out before then. She looked again and realized that because it's a refrigerated med, it would be here in 2-3 days so it could be here somewhere between Friday and Monday. That was slightly better than what she'd said before but still not good enough so she told me that I'd just need to get a prescription for a few days' worth from the doctor to cover the gap. (at my own expense, by the way) At some point during the conversation, I asked her to verify that they were going to cover the medication since I had been told that they were denying it and Raya's secondary insurance was paying it for the last few months anyway. She told me that all she could see was that it was in process for $25. I got off of the phone with her and called Walgreens where we normally get the prescription filled to find out if there was any way that they could see whether or not Raya's secondary insurance would deny the claim if we tried to refill it there as we normally do. The person I talked to said that because Medco's pharmacy was already in the process of filing that claim, he couldn't attempt to bill for the same medication, and that the only way he'd be able to find out what I wanted to know was if the order through Medco was canceled.

At that point, I decided to call the secondary insurance company to find out whether or not they would pick up the claim if I tried to fill it at the retail pharmacy and Medco denied the claim. The woman I spoke to pulled up records that showed that it had been the secondary insurance paying for the neurontin at least since July anyway, and that there shouldn't be an issue having it covered. Based on that information, I decided to take a gamble and cancel the order with Medco and then have Walgreens try to bill a refill as they normally do. I called Medco again and spoke with another representative who canceled the order for me.

Then I called Walgreens and asked them to try and process a refill. At first, the guy misunderstood what I was asking him to do and tried to bill it straight through the secondary insurance, and then told me it was denied because it has to go through the primary insurance first. I know that. He tried again the right way and got a message saying that the secondary insurance was denying it because prior authorization was required. I asked him what that meant and who was supposed to authorize what. He told me that the doctor's office had to call the secondary insurance and get them to authorize the medication. At that point, panic returned because I had canceled the mail order refill and Walgreen's couldn't help me unless I wanted to pay for it out of pocket, which I obviously did not given that she has not one but TWO insurance companies, at least one of whom should be paying for it. I called the nurse back and told her what had happened with the last 3 or 4 phone calls. She didn't know what the Walgreen's guy was talking about and said that she can't just call an insurance company and tell them to authorize something but she said she'd call Walgreen's and find out how much it will cost us to pay out of pocket for a 7 day "bridge prescription" to cover the gap. While she did that, I called Medco and tearfully reinstated the order. (oh yes, I don't think I've made it through a single phone call today without bawling at some point except for the one where the secondary insurance lady told me that they would cover the neurontin, which later turned out to be false.)

This Medco lady said that since the process had been interrupted when I canceled the order, they would have to start all over again and that it would be arriving in 7 days. I told her that would not work and that we needed it sooner than that. She said that the earliest it could get here is 5 days from now, which still leaves us having to get the bridge prescription to cover the days after she runs out. Fine, good enough. Before we hung up, I asked her if she could verify that the secondary insurance was going to pay their portion of it and she told me she didn't have that information. I asked her if Medco had the information to bill the secondary insurance and she said they had no record of a secondary and that she couldn't get that information from me anyway. She said that the secondary insurance company would have to call Medco and give them that information. Um, WHAT?!? Are you kidding me?? I told her that I didn't understand why they couldn't take the information from me and that no medical provider of any kind (and we've had LOTS) has EVER told me that the secondary insurance company would have to call and give them our insurance information and that what she was telling me made absolutely no sense. Nonetheless, she insisted that the secondary insurance company would have to call Medco.

Before I called Medco again, I called the nurse back to tell her that the order had been reinstated and that we would definitely need the bridge prescription, which we will be paying for out of pocket thanks to Medco's screw-ups. I had to bite my tongue when I was talking to her because she started telling me how she knew how frustrating it can be working with insurance companies and that she'd been on the phone most of the day with insurance companies yesterday. I've worked in a medical provider's office before and dealt with making phone calls to insurance companies, and yes, it is frustrating. However, when the subject of the call is YOUR CHILD, it is COMPLETELY different than a nurse who is on the clock and getting paid to make frustrating phone calls to insurance companies. COMPLETELY different. Maybe on a different day that comment wouldn't have bothered me but today, it did. I also asked her if she'd ever heard back or talked to the doctor about all the things I talked to the nurse about last week (i.e. motility slowing down, food allergies, etc.). She said the doctor should be calling me. I sure hope so because I've been trying to communicate with her for almost a MONTH now about these same things and I'm reaching my breaking point with that too. Just because these problems Raya's having aren't life-threatning doesn't mean that it's okay for us to go unheard or unanswered for a month.

Anyway, as ridiculous as I knew Medco's request was, I called the secondary and told them what Medco had said. Ironically, I talked to the same person I'd spoken to on my first phone call to the secondary. She said that there was no way that the secondary could call Medco to give them Raya's insurance information and that she'd never heard of any provider requesting that before. I agreed with her completely but it really didn't change anything that we both thought it was a dumb thing for Medco to say. I explained a little more of the situation and she pulled up records to see if she could figure out why Walgreens guy had told me that the secondary had denied his refill request. She said, "Oh, I see. It's because of your primary insurance." *face palm* Yes. That's what I'd been trying to tell her earlier when she told me they'd cover the medication. The primary insurance's requirement of ordering was a game changer. Because of the primary's mail order requirement, the secondary was refusing to pay at the retail pharmacy too.

After that conversation, I called Medco again to try one more time to get them to take the secondary insurance information from me. "Fabian" was polite enough at first. When he asked what he could help me with, I told him that I needed to give Medco my daughter's secondary insurance information. He said he could take it and I said, "Oh good, because the last person I spoke with told me that she couldn't add secondary insurance information." When I said that, he said, "Oh. Well I need to talk with someone else about our policy on secondary insurance. I'm going to place you on a brief hold." Great. Fabulous. Then he came back on the phone and told me that Medco can't set up the coordination of benefits with a secondary insurance and that our benefits coordinator would have to do that. Again, that made no sense so rather than try to get useful information out of someone who was just regurgitating what someone else had told him, I asked to speak with a manager. He put me on hold again and got "Barry" on the line. I again explained that my daughter has coverage with a secondary insurance provider and that Medco will need to bill the secondary insurance. He pretty much told me the same thing Fabian and the earlier lady had said, which was that it would have to come from our benefits coordinator through our employer. That made no sense whatsoever because the benefits coordinator at work has NOTHING to do with Raya's secondary insurance for people with developmental disabilities that's provided by the state. I don't remember exactly how the rest of the conversation transpired because when he told me that Medco was powerless to help me and that they were just a helpless ol' 3rd party administrator, I finally ran out of patience and started yelling. He kind of deserved it after he told me, "Ma'am, I understand how you feel." OH NO YOU DON'T. You have NO IDEA how I feel! That is a REALLY REALLY REALLY stupid thing for ANY customer service rep to say, especially to someone who has spent the whole day listening to that same kind of crap from every other person they've talked to all day long.

By that point I had spent nearly 5 HOURS making these aggravating phone calls that had really done nothing other than more clearly illuminate the problem(s). Let me see if I can summarize.

1. Medco (our prescription coverage administrator) now requires us to fill Raya's Neurontin by mail order through their own Medco/Express Scripts pharmacy instead of the retail pharmacy. (and yes, I think that's shady for them to be able to deny payment for meds not filled by their own pharmacy. completely shady.)
2. Medco (insurance) refuses to bill the secondary insurance if we do it by mail order (because technically it is a Medicaid policy and they don't bill secondary Medicaid policies), but said that retail pharmacies can bill the secondary. (Refer to #1 about Medco not allowing us to refill at retail pharmacies)
3. Because our primary insurance (Medco) is now requiring mail order refills for Neurontin, they will deny the claim if it is billed by a retail pharmacy, and now that they've put that requirement into place, the secondary will also deny any claims that we refill at a retail pharmacy that fall under the primary insurance's requirement which would leave us to pay out of pocket for it.

What this amounts to is this. We are going to file an appeal with the benefits administrator who is supposedly (according to innocent little Medco) the big bad iron fist in all of this to try and get them to allow us to refill Raya's medication at a retail pharmacy so that her secondary insurance will be billed. If that doesn't work, then I will be stuck filing the claims myself every single month. Because I don't already have anything else to do. I'm already going to have to do that for this month and most likely next month as well since the benefits administrator told Donny that the appeals process takes 15-30 days.

And where were the kids while all of this was taking place? Watching Netflix all day long, sitting in the high chair eating marshmallows so they would stop knocking over the IV pole trying to dance to Halloween music, using an entire package of band-aids, climbing on the kitchen counters, not taking naps, somehow pulling out the G tube still fully inflated and then carrying it to Mommy in an owl-shaped purse, climbing on Mommy, fighting over the non-functional keyboard and mouse, spreading toys throughout the house, and undoubtedly getting into the big kids' things while they were gone to school. Do I feel like a good parent today? No, I don't. And don't bother to tell me what an awesome mom I am for going to all this trouble on Raya's behalf. If you had completely ignored your kids while spending 5 hours on the phone with people who made your blood boil & made you cry all day, repeatedly shushing them while you were on the phone, telling them to turn on another show to watch, giving them more marshmallows because you need them to be happy for a few more minutes, and then had your 5 year old ask you why you were pounding on your desk and yelling, you wouldn't feel like a good parent either and you would probably be questioning whether or not you should be attempting to go to school right now and do all the other things you're trying to do too. I don't have the energy or patience left to deal with their usual antics and I really just want the whole world to go away and leave me alone. That doesn't make me feel like a good parent/person either, but now I will just have to put on a happy face and dress everybody up in Halloween costumes to parade around the neighborhood and collect candy, most of which they won't get to eat either because of allergies or because they just don't need it.

So there you have it. This is one of the ugly days where I just want to wave the white flag and be done with all of this. Hopefully I will be out of that frame of mind by the time we have our IEP meeting at the school on Monday. :/ On the positive side, I will say that I made it 5 whole aggravating hours before I finally lost my cool and yelled at somebody and that's pretty dang good considering what I was dealing with. To top that off, I never swore at anybody and I didn't even say "hell" so I'm at least proud of myself for that.

Monday, October 29, 2012

A Dose of Reality

Yesterday and today have been difficult. It's been more in a string of days full of slap-in-the-face reality checks. Not that there was any particular terrible incident or anything, just a difficult and exhausting day yesterday and less of the same today.

Since last fall, we have had the privilege of having the most wonderful respite provider for Raya who is willing and able to come on Sundays to stay with Raya while we go to church. This has allowed us to minimize her exposure to illnesses & infections and the risk of accident or injury involving her G tube, not to mention the great pleasure of getting to sit through church and actually listen instead of wrestling with a busy toddler. To be perfectly honest, I have loved being able to leave her home. The other 3 kids are so well behaved during church that we really do get to just sit and listen. It's been exactly the break from reality that I've needed and I usually come home feeling recharged. Last Sunday and yesterday our respite provider wasn't able to be here so Raya went to church with us. The service lasts 3 hours with the whole congregation in the chapel for the first hour and then divided into classes the 2nd and 3rd hours. Normally a child Raya's age would go to the nursery class for the 2nd and 3rd hours of church but we don't feel like nursery is a good place for her to be at this point for many reasons so she stays in the adult classes instead.

She started the day off on the wrong foot yesterday. She woke up at the crack of dawn like always and was tired and crabby by 8:00. In the rush of getting everyone ready for church, I had to throw her meds, pump bag and formula into my bag on the way out the door instead of giving it to her earlier. I offered her one of her special pancakes but she didn't want it. I heard her stomach growl and she said, "That was just my stomach. Hee hee." I asked her if she was hungry and she said no. I told her that when her stomach makes that sound it means that it's hungry. She got upset and yelled, "I'm NOT hungry!" Again, this just reconfirms my suspicions that she is very confused about the meanings of the sensations she's feeling.

Off and on, she was excited and then protested going to church. When we sat down, she sat at the other end of the row from Donny and me because she wanted to sit by Ashtyn. Before I realized it was happening, the person passing the Sacrament bread let Raya have a piece. Not that one piece of bread is the end of the world but there went our efforts for complete avoidance of wheat. After that, I took her to the mothers' room to give her meds and connect her first feed for the day. I sat her down on a chair and got her extension tube and meds out and she immediately grabbed her tube and started telling me she didn't want "to be plugged". It's her new favorite thing to say (yell) when I'm trying to put anything in her tube. I didn't want to start a fight already since we'd been there for all of 15 minutes at that point and there was a lady in there trying to feed her baby, so I gave her the little baggie of "marsh-a-mellows" that I brought for her. That worked and she let me do what I needed to do. Because we weren't at home and I have yet to figure out a good way to get Farrell bags to work for her outside of the house, I didn't use one. I didn't think it would be an issue. I really wish I knew why her little body is all of a sudden having trouble tolerating her feeds but that's another post for another day.

After the first hour of church, we went to the Sunday School class. Raya insisted on having her own chair so she got to claim the one in between Donny and me. I'd say she sat on the one in between us but she didn't do much sitting. One thing that I've come to understand about her is that when she's in an unfamiliar environment, especially one as noisy and visually busy as church, she has a difficult time coping with everything that's going on. Many times last week and yesterday, I couldn't help but think that maybe if we had been taking her to church all along, she'd be able to handle being there better. I didn't spend much time entertaining that thought though because I know without a doubt that if we had been bringing her all this time, she would have gotten sick much more often and she's been better off being able to maintain a consistent nap schedule that would have been interrupted by our church schedule. Anyway, I could tell from the beginning of Sunday School that she was not going to last all the way through church. She kept saying she was tired and wanted to lay down on my lap but when she gets overstimulated (like how she gets when we bring her to church), she canNOT be still. I'm not saying I expected her to sit still for 3 hours, but there was not one second that her body was not wiggling or squirming in some way. When I checked how much formula was in her stomach 3 1/2 hours after her feed, I understood where some of that squirminess was coming from but it was definitely also a result of being overwhelmed by her environment.

She behaved just about as well as anyone could ask of a 2 year old in Sunday school but was getting really restless by the end. In order to help her get ready for the next hour of church, I held her hand and had her jump down the hallway. I was hoping it might help calm her system a little. I had tried stroking her back when she was laying on my lap in Sunday school but after 3 or 4 rubs, she would push my hand away and say, "Stop touching me!" just loudly enough that everybody around us could hear her.

I really thought she'd relax a little more during the last hour of church since we were in a smaller room on nice soft chairs. She didn't though. By that point she was tired and fighting sleep so she dumped all her toys on the floor, danced around, wouldn't whisper when she talked to me, was climbing up & down, and just generally making too much noise. She climbed up on the chair and wanted to lay on my lap but I told her to grab the little car that was sitting on the floor in the aisle so nobody tripped over it. That was apparently too much to ask. Instead of doing that, she wanted to stand on the hymnal that was on the floor and when I told her to get off of it, she got her feelings hurt and flopped down on the floor. I decided we were done and started picking up her toys, which then cued the yelling. "Mommy! I want my toys to stand up!" repeated over and over again until I carried her and all of our stuff out of the room. From then on, there was no communicating with her and I was too tired to try and wrestle with a 30+ pound kid to enforce the same kind of behavior we have always expected out of our other 3 kids at church. She and I spent the rest of the time in the hallway where I chatted with friends that I haven't seen in a long time.

Sometimes I imagine that people probably wonder why she's in class with us instead of the nursery and maybe even why we let her "get away with" the things she does. Yesterday, I didn't really give a crap what anybody else was wondering about or thinking. I wish I could say that's the case all the time but it's not. It comes & goes like that. I'm so grateful to be back in the same neighborhood and going to church with a lot of the same people who knew us when Raya was born and through the bumpy ride of her first year. It makes it a lot easier for me to handle the emotional stress of taking her to church and trying but failing to make her behave like I want her to and like her older siblings did when they were her age. By the time we left to go home (making our way through the droves of people in the hallways) we were to the point of carrying her against her will and she was kicking & screaming the whole way because she wanted to walk (which would have been jumping, running, tripping, running into people, getting knocked down, stopping 15 times do look at things and forgetting what she was supposed to be doing, etc.).

We hoped she'd fall asleep on the way home even though we knew she wouldn't. Donny and I needed to go back to the church a little later for a few minutes so we took Raya with us, again hoping she'd fall asleep in the car. We put her in her stroller & I was going to vent her with a bolus extension & syringe before connecting the feed. Seeing me coming toward her with an extension tube made her upset and she covered her tube, hunched over and started crying and telling me "no". We were in the presence of several other adults and once again, I felt like we had become a circus act. To make things worse, when I did get the tube connected and vent her stomach, over an ounce of undigested formula came out immediately. That meant that the feed from 3 1/2 hours earlier had not cleared out of her stomach yet. (Probably the reason she felt yucky & didn't want me to connect her feed.) I connected her feed anyway (with her yelling, "I don't WANNA be plug-ded!" the whole time) and this time, used a Farrell bag to help relieve the pressure in her stomach. Then I had to take her outside and let her calm down so we could stop being so disruptive. She kept crying until I caved and let her watch Backyardigans on my phone. I hate doing that but she needed something to pull her out of her meltdown and Backyardigans almost always works.

She calmed down and we finished up and went home. When we got there, she wanted to keep watching it so I let her take my phone in our room and lay on our bed with her blanket. I had to hang the Farrell bag somewhere so it ended up hanging from a screw up above our bed. It looked ridiculous and was much higher than the ideal hanging height but there was nothing else to hang it on at the moment so it worked well enough. Within about 15 minutes, she was out for the count.
I normally don't take pictures of her with my real camera when she's sleeping because I'm afraid the sound of the shutter will wake her up. It sounds so quiet any other time but when I'm taking pictures of my sleeping girl, it may as well be a freight train. Thankfully she didn't wake up and I got a couple. I love her dearly when she's awake, but it always makes my heart happy to see her sleeping comfortably and peacefully, especially when I know how badly she needs it.

After her nap, she was just as sweet and pleasant as could be. She was happy, rested, and ready to interact with everybody. This is not always the case when she wakes up from naps, so when she wakes up happy it's a special treat. :) She played with the big kids and we watched a couple of our Halloween favorites (Hocus Pocus and The Canterville Ghost, 1987 version) and had dinner. She tried a piece or two of yellow squash but wasn't impressed so she just ate ice cubes for dinner. We tried her new bedtime routine that her OT wrote up for her and then put her in bed. She still didn't go to sleep right away but once she's in her bed at night, she's content & we're just ready for her to be in bed.

See why I'm exhausted and questioning my judgement in taking on 7 credits' worth of very time-consuming online classes in very involved subjects? I love her dearly with all my heart but she's really wearing me out lately, especially when we go out in public. Not in the sleep-deprivation way that taking care of her when we were doing things around the clock with her, but more of an emotional and mental exhaustion. And a little bit physical too. She's getting bigger and struggling with her is getting harder. It would undoubtedly be easier for me to be taking in-person classes where I could just sit and listen to the lecture and take notes instead of trying to read the lecture with kids climbing all over me and wanting to be squeezed every 5 minutes (and/or climbing on the counters to stuff her face with marshmallows) but that's just not an option right now.

Saturday, October 27, 2012

Very exciting news...

The short version: Raya qualified for early intervention preschool. Yay! Now I can stop stressing about it and maybe one of my Raya-induced ulcers will go away... :)

The lengthy version:
One of my (many) sources of stress involving Raya for almost 2 years now has been wondering whether or not she'd qualify for early intervention preschool. To say that it's been an emotional roller coaster would be pretty accurate. When she was diagnosed with cerebral palsy, I thought that it meant she would automatically qualify to transition to preschool as well. When I found out that this was not the case and she actually would have to be evaluated, I thought for sure that she would not be going to preschool. At the time, she was only 10 or 11 months old and I didn't really care if she qualified for preschool or not. However, as she's gotten closer and closer to turning 3, I have come to understand why she needs it and the thought of her not qualifying has gotten scary. I have hoped and payed and stressed over whether or not her "special needs" are "special" enough.

Along the way, I've been given many, many opinions about whether or not Raya would qualify for preschool. Some opinions were welcomed because I felt that they came from people who had a professional background that gave them informed insight into the process. Others were well-intentioned from people who love her and either don't see or don't understand her developmental delays and just want her to be "normal". There have also been a few that were downright rude, condescending and judgmental, as if we're inventing or exaggerating these so-called problems to get attention or milk the system. No matter the source or the intent behind the opinions, it has been very difficult for me to keep a clear mind about this subject. I can't even begin to count how many times one little comment, whether from a therapist, friend, family member, or random stranger, has made me question again whether or not we are wasting our time and energy on therapies that she doesn't need and making a big deal out of quirky behaviors. Further compounding that difficulty is the fact that aside from generalized descriptions, nobody could ever give me specifics on what the evaluators would be looking for.

All along I've hoped that Raya would qualify for preschool but have also not been able to shake the fear that she wouldn't. If I didn't feel like she needed it, I wouldn't have worried about it but she DOES need it and I am and always have been a big worry wart. The closer we've gotten to her 3rd birthday, the harder this has been for me. As her mother and primary caregiver, I see things in her at home, at OT, and in different settings with her that are difficult to explain. The more I've seen these characteristics, tendencies, and behaviors emerge and evolve, the more strongly I've felt that in order to be able to be successful in her future academic life, she NEEDS to spend time learning to cope with the classroom environment and continue in her therapies. Thinking about it has been a constant source of stress for me, especially on her bad days. Then add in recently moving, my own (very time-consuming) schooling, the occasional photography job, 3 other kids, a husband, and a house that doesn't clean itself and you've got one frazzled stress case of a momma.

Thursday was our meeting at the school she was evaluated at to go over the results of the eval. I was almost sick to my stomach about it all morning because I knew if they denied her I'd have to appeal and have a whole new eval done. Raya was really tired yesterday and fell asleep on the way there. I thought for sure they were going to tell me that she didn't qualify, which meant that I would have to unleash the mama bear in me and appeal to have her re-evaluated at the school we're now living in the boundaries for. I tried to call a dear friend on my way there so she could give me a little pep talk but couldn't get a hold of her so I just talked to myself instead. Ha ha. :) I felt a little bad for being in the mindset of preparing myself for battle, but unfortunately when it comes to things like this, that's just what you have to do.

We dropped Kaida off at a friend's house and before we even got to the freeway, Raya was out cold. She'd been crabby all morning so I was laughing a little at the thought of her going into the meeting like the angry little darling that she often is when she wakes up from a car nap. She must have been REALLY tired though because I got her out of the carseat and put her in her new-to-us stroller that I bought off of Craigslist (Britax B-Agile, LOVE it!) and she didn't wake up. She stirred enough to jabber something at me about dropping her toy, which I put in her hand, but then she went right back to sleep and slept until we got home.

We walked back to the same room we had the evaluation in and I got Raya's feed started. I had meant to get it going before we left home but we ran out of time (big surprise there) and she's been fighting me on connecting her feeds lately anyway. The ladies we were meeting with had just finished up lunch and were still getting papers together so while they did that, I poured a couple cartons of formula in, untangled 15 feet of tubing, connected the extension tube to her button, and fired up the feeding pump.

So here are the results. In order to qualify, Raya had to score below a 76 in two or more areas. Anything between 76 and 115 is considered average. The areas evaluated by the school psychologist were daily living skills, cognitive development, social/emotional development, motor skills. She also evaluated behavioral concerns but that area can't be scored in children under the age of 3. She fell below the average range in daily living skills, social/emotional development, and motor skills. (This was when I breathed a sigh of relief because I knew she was in.) Evidently not eating and not being potty trained really does factor in. :)

The physical therapist assessed stationary, locomotion, and object manipulation to come up with a gross motor quotient. In the area of stationary skills ("a child's ability to maintain control of his/her body within its center of gravity and retain balance") she scored in the low average range. What can I say, she was having a good balance day that day. In locomotion (ability to move from one place to another) she also scored in the low average range. Again, she was having a good day and didn't trip and fall or run into anything while we were there. I still feel like this was a pretty accurate score though and one of the areas where we can be really proud of her and ourselves (Donny, me & her therapists) for the great progress she's made with PT & OT. In the area of object manipulation, she scored below average.

One thing I liked about the PT's report was that she gave me specific examples of what children in the average range can/should be able to do and which of those things Raya is unable to do. Some of those things that she was unable to do included standing on one foot for 3 seconds, standing on tiptoes for 3 seconds, walking backward 10 feet, jumping down from 16 inches, running 30 feet in 6 seconds or less, walking on tiptoes, throw a ball underhand, kick a ball using opposite arm & leg movements, and throw a tennis ball overhand more than 5-6 feet forward. Evidently those are all things that kids her age should be able to do. I thought it was interesting that she couldn't walk on her tiptoes.

Anyway, she did not have a qualifying score based on the PT's evaluation but she still recommended that the IEP should include the importance of monitoring her closely on the playground/play structures because of her lack of a sense of danger.

And last but not least, the speech therapist's evaluation was interesting as well. She had told me at the evaluation meeting that Raya was definitely not going to qualify based on speech delays because she fell into the average range in both auditory comprehension and expressive communication. Because of that, I didn't expect her to say that there were any delays or concerns with Raya's speech. In her report, she noted that Raya does have some articulation issues that should be addressed with speech therapy. She also acknowledged that Raya often drops off the last syllable of words and that her articulation decreases when she connects multiple words together. It was another big relief for me to hear her say all of that because I've noticed those things but anytime I mention them to anybody else, it seems to get brushed off as being typical for a child her age. I told them how in the weeks following Raya's evaluation she had a huge flare-up of her sensory issues and that it had greatly affected her speech, and specifically the articulation & syllable reduction that the speech therapist had mentioned. It was really validating for her to tell me that she had noticed those same things even though Raya would barely speak above a whisper the whole time.

So how do I feel about all of this? I almost got tears in my eyes as they were going over the summary report. Their descriptions of her were so accurate and made it very clear that she DOES have developmental delays in some significant areas. She may be able to walk and talk, but that is just a drop in the bucket. On one hand, it's very validating to have the evaluators see what I see (and more that I didn't see) and I can finally tell myself once and for all that I'm really not crazy, my kid does have issues. On the other hand, I don't want people thinking she's any less of a person because she's not within the "average" range in some of the less obvious areas of development, nor do I want people judging me as a parent because of those things. (i.e. she's not potty trained, doesn't eat, has meltdowns, etc.) Part of me was jumping up & down excited that she qualifies, but hearing them put her developmental delays into words (which I have struggled to do) was like a little knife to my heart. I am SO grateful that she has been able to qualify for the therapies she needs (even if I couldn't always understand or explain why she needs them) but it makes me so sad that she struggles so hard with things that should just come naturally. I know that a lot of what I put on the blog is the hard things and the ways that she tests me, but I want the world to know that no matter what I might say when I'm venting my frustrations, she is a sweet and wonderful girl who I have no doubt will go on to do great things in her life. Continuing with the services & therapies she's already getting as well as introducing preschool and speech therapy and (hopefully) finding a new feeding therapist will set her up for success in her academic career and life in general and I'm so grateful that there is so much help available for her/us.

Tuesday, October 23, 2012

Better day

I'm happy/relieved/grateful to report that Raya had a much better day today. Today her crabbiness only reached what would be expected from a child her age, which is nowhere near what she's been like the last several days. I'm nit completely sure why she did better today but it may have had something to do with dropping her feed rate a little more and spacing her out 4-5 hours in between feeds. Today when I checked for residuals (leftover formula in her stomach from the last feed) there was only an ounce or less and what was there was definitely more digested than what I've gotten out of her the last few days. This means that the slower feeds and longer time between feeds is allowing her stomach to empty. She wanted a hug after her evening feed and when I knelt down to hug her, she almost spit up on me. Lucky for me, she swallowed it. I asked her if her tummy hurt and she said it did so I asked her where and she pointed to where her stomach really is. Obviously she's having a big reflux flare and goodness knows what's behind it. I finally talked to the GI nurse today. We've never met her so I explained some of Raya's background and what the recent developments with motility and allergies are. Honestly I'm not sure what else can be done other than what we're already doing, I just wanted her doctor to know what's going on because we're moving in the wrong direction right now. Hopefully she won't need her feeds slowed down any more than we've already done and we can figure out what's causing this flare up of slow motility.

Monday, October 22, 2012

Next stop: wit's end

I love my kids but I was totally ready for bedtime tonight. As fussy/crabby/whiny/difficult of a day as Raya had yesterday, it was just as bad today only we had to be out in more public places today. She ate a buckwheat/tapioca pancake around 8:30 this morning. Or most of a pancake, anyway. Then she watched Backyardigans and went to bed for a nap that didn't actually happen. She was tired enough that she climbed into the crib but couldn't go to sleep. 90 minutes later I changed her poopy diaper, opened all the windows to air the place out from said poopy diaper, and we left to go test out a few strollers at Babies R Us. I need her to have a stroller very badly and the dinky 8 year old umbrella stroller we're using right now isn't cutting it. After that we headed to our last OT appointment with Miss Jen. We will miss her but hopefully we'll cross paths with her again at her new job.

After therapy, we went grocery shopping. It was pretty much a nightmare. I don't know what I was thinking taking those two to the grocery store at 1:30 in the afternoon (other than consolidating trips to save gas $$). Raya spent a good part of the shopping trip screaming, yelling at me, standing up in the baby seat (she's houdini & can get out of a buckled grocery cart like nobody's business) and really just making her presence known to all of the elderly people that were spending a leisurely afternoon at the store. By the time we checked out, she was in a full blown screaming fit. It was fun. I love walking through public venues with everyone staring at me and my screaming child and trying to pretend I don't notice their judgemental looks.

Sweet reprieve came when both girls fell asleep on the way home. Kaida woke up when I got her out of the car but Raya stirred a little and then went back to sleep when I put her on the couch. I connected the pump & gave her the next feed and she slept for about 2 hours. When she woke up, she must have been a little dazed & confused because she was screaming and babbling nonsense while waving her hand at nothing. She sat on my lap for a few minutes but then had a 20 minute rolling-on-the-floor screaming fit because I wouldn't let her watch Backyardigans again. She did that off & on for about an hour and then I decided to vent her stomach to see if she had much of the previous feed left. There was a little formula but it was watery, which means it was being broken down by her stomach acid. It was mixed with other saliva-ish junk and some unidentified dark colored flecks. Upon further investigation, it turned out to be little pieces of buckwheat pancake. I'm no expert here, but I'm pretty sure that it's not okay for food to sit in a stomach for 10 hours. There wasn't much of it but there probably shouldn't have been any. I drained about 20 ml of liquid out of her stomach and no sooner had I done that than Happy Raya reappeared. She ran around in circles in the living room for about 10 minutes and was just as happy and pleasant as could be for the rest of the evening. I don't know what is going on with her digestive system right now but I don't like it. She's been really difficult to handle all day long lately and it's exhausting. Whatever is going on with her, I hope it goes away soon. Mommy has homework.

Sunday, October 21, 2012

A little relief

To recap, last week we realized that Raya was showing signs of not completely tolerating feeds so we slowed her down from a 25 minute feed (which she's been on for a long time) to 45 minutes. We also started using Farrell bags again because they allow any gas or air to escape from the stomach during feeds and allow the formula to run in as the stomach is ready for it.

So far it seems to be helping a little. She definitely seems more comfortable during and after her feeds. The tricky part is that I have yet to get the Farrell bags to work when she's out of the house and we don't have something to hang it from so that it's a couple feet above her stomach. If we don't have it that way, the formula will NOT go into her stomach. (ask anybody that happened to see us at parent teacher conferences. we were a circus act with all that extra tubing and a bag full of formula+chocolate floaties from the M&Ms she got into earlier that afternoon)

So yeah, we're currently only using the Farrell bags when we're at home or in the car and can hang it up higher than her head. The one that seems to make the biggest difference is the afternoon feed so thankfully most of the time we're home for that one.

Friday evening we went to a little get-together and the kids got to have one last swim for the summer/fall. :) They all said the water was freezing (so did Donny) but Raya didn't care. :) She loves cold.
All the other kids kept getting in & out but Raya just kept swimming. :) She was the last one out. She's come a long way since the beginning of the summer with keeping her face out of the water. She only inhaled water a couple times and didn't gag when she coughed it out. She must have really worn herself out (and maybe the melatonin is helping...) because she took a nice, long nap yesterday for the first time in however long it's been. I can't remember. It's been a while.

Today was a long day for me. Normally she stays home from church with her respite provider so that she can have a nap (since church is during naptime) and so that she can avoid germs in nursery. This week her provider wasn't available so Raya got to come with me. Like I mentioned, church is at naptime. She was a tired girl and crowds can be difficult for her. She had wanted one of her "special pancakes" before church but we ran out of time (it takes her an hour to eat one pancake) so she didn't get one. I brought a baggie of Kix with us but she was totally not interested. We escaped to the mothers' room for a minute to vent & do meds and then sat back down. She had no interest in sitting (on my lap, on a chair, on the floor, etc.) and kept saying rather loudly, "I just wanna PANTATE!!" So the I felt bad for not giving her a pancake but we didn't have time. I knew her stomach needed something in it so I went to connect her feed and her G tube balloon was getting sucked down into her pylorus again. That can't feel good. I pulled it up and connected her while she tried to block me and kept saying, "I don't wanna be plugged!"

Church is long. As in 3 hours. It's kind of a lot to ask of an almost 3 year old (and her mother), but she did pretty good considering she should have been at home taking a nap and she went to the adult classes with me. She didn't want to wear her backpack. I don't remember what I said to convince her to wear it but whatever it was worked. She spent most of her time rolling around on the floor and playing with little plastic knights and a cheetah and either smiling and being all cute when people talked to her or making a sound and pulling away from them. A couple of people got close to her and started talking to her and patted her leg or arm. She did NOT like that and pulled away, which was followed on both occasions by comments like, "Oh, somebody's tired!" or "Somebody's not very happy!" or something to that effect. I felt bad for Raya because I knew that her reaction had NOTHING to do with her being tired, she just didn't want people touching her. She was really whiny and bossy all the way through church and I realized I was feeling very self-conscious about it. I felt like people were going to see the way she was acting and write it off as bad behavior and assume that it was my fault because I'm the mother.

Really it shouldn't matter what other people think but knowing that and feeling it are two different things. I just hate feeling like she's being misunderstood. She was just having another rough day at the end of a long, rough week but to anybody else, she just looked like a tired cranky little kid who whines and yells a lot. I'm grateful to have moved back to where we lived when she was born so that we're among friends who knew us when she was medically at her worst. Today was a little bit of an eye opener for me though. Seeing her like she was all day today (tired, crabby, whiny, fidgity, ornery, sassy, weepy, etc.), it just makes me wonder how in the world she's going to handle school.

Later in the afternoon, I vented her before a feed and when I popped the clamp open, she looked at the extension tube and said, "Slobber!" And she was right, the tube was filling up with bubbly saliva mixed with chocolate that she'd eaten about 4 hours earlier. (delayed gastric emptying, anyone??) The gross part was when I went to dump it down the drain and she yelled that she wanted to drink it. Sick. The evening was better than the rest of the day. She sat at the table and had a few bites of potato and a couple bites of cooked carrot for dinner. She was a little upset that I didn't give her butter but she still ate a little.

Again, I found myself feeling frustrated today that THIS kid was not the one I brought to the preschool evaluation last month. We have our results meeting on Thursday afternoon so I'm trying to prep myself emotionally for it, whatever that means. It's hard to prep for something when you have no idea what to expect other than for it to be an emotionally exhausting and potentially aggravating/painful/frustrating experience. I just keep telling myself that I can appeal if I don't agree with their findings and we'll go from there.

Friday, October 19, 2012

The October Blahs

I love this time of year but I'm starting to think that we should just go into the month of October with low expectations. Raya's first October was just plain awful (i.e. vomiting blood for the 2nd month in a row, miserable, half the month in the hospital, etc.). Last year was exponentially better than that but still no picnic. I was reading back through last October's posts and realized that the only thing that's really changed since then is that Raya's list of suspected food allergies has grown. :) Other than that, we've pretty much broken even with progress towards oral eating. I feel like we've gone way backwards recently with all the foods we've taken away from her but her eating skills have improved and her willingness has increased so that's a plus.

I'm starting to wonder if corn is a problem too. She's been eating primarily corn products for a couple weeks now (Fritos, Puffcorn, Tostitos, Kix, etc.) since she's been wheat-free and rice-free (and dairy-free and peanut/tree nut-free and oat free...) so it's been disappointing that she's had a bad week this week. When I say "bad week" I mean she's been gassy (both ways), super crabby, tired all the time, needing her feed rate cut in half, needing to be vented more, telling me she's hungry which really means her stomach hurts, and her gastric emptying has been delayed. And the little dotty rash around her mouth has flared a little bit again, which could possibly be completely unrelated or it could be because I caught her eating a granola bar a couple days ago that she managed to get her hands on. I had hoped that in this house, she wouldn't start climbing on the counters to get into food but I walked into the kitchen this morning just in time to grab the box of Cheese Nips before she dug in. She was sitting on the counter and the crackers had been on top of the fridge. We might have to barricade the kitchen with the baby gate like we talked about before we moved in. Bummer.

Wednesday night I decided to vent her before I gave her meds at 10:30. I couldn't really see because it was dark in the bedroom but when I opened the cap on her G tube, liquid started coming out. I hurried and connected the bolus extension with the empty syringe on it and I could tell that what was coming up into the tube was not a normal color. There was a LOT of gas too. If she'd been awake, she would have thought all those "tummy burps" were hilarious. :) After I let everything come out that would, I gave her the meds and took the syringe of mystery liquid in the kitchen so I could see it. It was a shade of orange that I've never seen come out of a stomach before. The orange liquid was separating out and floating on top of the white liquid, which was also strange and something I'd never seen before. She had eaten Fritos for dinner 5 or 6 hours earlier but that was it. (and yes, I realize Fritos are not an ideal or healthy choice for a 2 year old but there aren't too many other options right now)
Upon further investigation, we decided that the orange liquid was most likely oil from the Fritos. Gross. I may not be eating Fritos for a while.

Yesterday was another off day for her. I walked into the living room in the morning and found the two little girls all snuggled up on the couch. It was adorable but not normal AT ALL for Raya to do that. They laid there like that for several minutes.

I reduced her feed rate to 335ml/hour instead of 600ml/hour so her feeds last about 45 minutes now instead of 25. She's not happy about that because she's gotten so used to not having to wear her backpack and throws a fit most of the time when I try to put it on her. Then it turns into a wrestling match. I also started using a Farrell bag again to vent her during feeds. It's quite the contraption. It basically turns a pump feed into a gravity feed by allowing formula to run up another tube and into a bag if there's too much pressure in the stomach for it to go in right away. Then as there's room in the stomach, it will run back down the tubing and into the stomach. It also allows any air to escape from the stomach during feeds which is helpful for kids who can't or don't burp. Raya can but seldom does. The only tricky thing about Farrell bags is that for Raya, unless it's hanging a couple feet above her belly, the formula will not run into her stomach. It backs up into the bag and stays there. Solution: hang it from whatever is closest. Yesterday, it happened to be the light fixture above the table:

In the car, we used the little hanger hook. It works great. :) I had parent teacher conferences for the big kids yesterday afternoon. Raya had fallen asleep on the way home from OT (which was a very different experience since the SPIO had gotten puked on by another kid the day before & was at someone's house getting washed) and slept for about 2 hours on the couch.

She woke up right when I needed to get ready to leave, which was good timing, but she was a mess when she woke up. She was angry, crying, kicking anyone that got near her, grabbing at her stomach when I tried to vent her, etc. Then I eventually got the extension plugged in and air & formula immediately started coming out. I half carried, half dragged her into the kitchen whilst trying not to spill the stomach contents on the nice carpet and drained what was there into a cup. She was throwing a fit, rolling around on the floor (which really complicates trying to drain her stomach) and just being a pill so I finally gave her chocolate so she'd hold still while I finished. She had about 2 ounces come out, which was 20% of the last feed she'd had, which had been 4 hours before that. It wasn't as bad as the last time this same scenario happened but she probably shouldn't have had anything left in her stomach. If she was comfortable and still had that much it wouldn't be an issue but she was clearly not feeling well. I took her to parent teacher conferences with me and she refused to walk so I had to carry her. She's getting WAY too big for that. :)

This no napping thing is starting to get to the both of us. She's always had a somewhat inconsistent nap schedule thanks to being at the mercy of her appointment schedule but she's pretty much stopped napping now. This is not to say that she doesn't still need naps. She's tired, I'm tired, we all just need naps. We started melatonin last night so I still have my fingers crossed that it will help but I'm not holding my breath. I thought for sure she'd go to sleep today since she had her daily poopy diaper a couple hours before naptime but no luck. Oh well, at least she's happy for the moment. :)

Wednesday, October 17, 2012

Knowing your kid

You would think by now that I'd easily recognize all of Raya's quirky little indicators that something is wrong. The problem is that it's all so subtle that I often feel like I'm imagining things when I start to think she's a little off. The past 2 weeks, she's been WAY off in a lot of her sensory processing issues. At first I thought that maybe she was coming down with something but it's been over 2 weeks now that she's been acting strange. The constant need to be hugged, less coordinated than usual, frequently sliding off of whatever she's sitting on (especially the couch or me while I'm on the couch), reduced clarity of speech (specifically not completing words when putting multiple words together and softening of letter sounds), running into things, and an overall decrease in body awareness are just a few examples.

Another thing that's been way off in the last 2 weeks or more is her inability to fall asleep at nap time. I didn't realize until today how significant this problem has become for her. A lot of kids her age stop napping or only nap a couple times a week and that's fairly typical. However, this week it has gotten to the point where it's no longer typical. Instead of buzzing around like a little honey bee all morning long and being full of energy and perky before naptime, Raya spent the morning laying around on her blankets. She'd get up and run around for a few minutes and then lay down again and say she was tired. This morning when Donny was changing her diaper before he left for work around 6:30, she told him she was tired. She kept telling me all morning and afternoon that she was "so tired" or "I just tired" and was actually happy to get in bed at naptime and tried to climb in by herself. Then she spent the next 2 hours not going to sleep. Her room is dark and cool, which is the way she likes it, and I didn't let her take a bunch of toys to bed like she would like to. Her sleep CD that she used to love now bothers her and she says it's too loud even when it's turned down low, so I didn't bother turning it on for her. I heard her singing to herself at one point and thought she probably had a poopy diaper since she never actually tells me when she does, but she didn't. Then about an hour later she did. After that, she wanted out of bed but even as I was getting her out she was telling me she was so tired.

We laid down on the couch for a while but when she lays down with me, she insists on laying on top of me. Lately though, she can't seem to stay on anything. If she's laying on the couch, she constantly slides off onto the floor. Sometimes after she's fallen off several times she'll tell me she can't stay on, like she wants to stay on the couch but her body just won't cooperate. If she's laying on top of Mommy on the couch, she constantly wiggles & squirms and falls off of me too, which goes back to her recent difficulty with body awareness. It's not restful. Anyway, Donny and I were talking about it today and realized that even though Raya seems to go to sleep quickly at bedtime (which is between 6:30 and 7:00 for her), she wakes up early (sometimes before 6) and hasn't had a good nap more than one or two times in probably the last month. Now that she's not sleeping in our room anymore (woohoo!) I'm not sure, but I would venture to guess that she's been stirring in her sleep too so I don't think she's getting the best quality sleep lately either. All things combined, I'm declaring her sleep deprived and we're finally going to try giving her melatonin like a couple of her doctors have recommended in the past month.

On top of all of that, I've realized/decided that she needs a slower feed rate. Let me back up. It used to be REALLY easy to tell whether or not Raya was tolerating her feeds. If we tried to feed her too fast, she vomited and/or gagged/retched. Easy peasy. Now that she doesn't do that all the time anymore, it's MUCH harder to tell if the odd things that we're seeing have to do with her feeds or not. Because SO much of Raya's "special needs" have to do with lack of sensory integration, certain behaviors (like all of the things I described previously) can actually be tied to her gastrointestinal issues. Here's a list of the subtle signs that she's not handling the current feed rate like she normally does:
  • increased reflux sounds (i.e. throat clearing, extra swallows, loud swallows, etc.)
  • lack of energy during & after feeds
  • increased crabbiness
  • grabbing her tube & refusing to let me connect the extension to start a feed or give meds (she's NEVER done that until recently, and PLEASE don't bother telling me that it's behavioral or to get attention because it's not)
  • says that she's "humbwee" (hungry) during or after a full 250ml (8.5oz) feed, which tells me that she doesn't understand the difference between hunger pain and other types of stomach pain
  • gets upset and angry when I tell her it's time for formula in her tummy; yells that she doesn't want "foh-lah"
  • sometimes has more of the last feed left in her stomach than she should (really, there shouldn't be any left)
  • hiccups, violent & sometimes painful
  • spitting up, also known as "water puke" or "puke in my mouth," as Raya calls it
So yeah, even now that I'm typing that list, I'm more and more sure that that's what her problem is. Of course with her it's always a "chicken or the egg" problem in deciding which is causing which, but for now I'm going to cut her feed rate so she'll be fed over about 45 minutes instead of 25 and see if that helps. I don't always use Farrell bags to vent her while she gets fed but I'm going to do that too and see what happens. They're not my favorite but we'll see. They can help determine whether the feed rate is too fast as well because if it is, the formula will back up into the Farrell bag instead of going into the stomach.
(*side note, sometimes I type a statement like that and then stop and think, wow, is this really my life?? is that really my child we're talking about?? And it is, and I'm okay with that, it's just that this wasn't what I pictured before I had kids and there sure as heck wasn't any chapter in those "what to expect" books that covered tube feeding!)

I suppose that's it for now. Tomorrow marks 2 years since one of her hospital stays and this afternoon, she and I looked through the pictures from it. She was confused and kept asking me if it was her friend Lily in the pictures. :) I told her it was little baby Raya and she liked looking at the pictures. I know she still carries the trauma of those hospital stays but I'm so glad she doesn't actually remember them.

Tuesday, October 16, 2012

OT progress check & some new foods

Every now and then it's nice to go back in my archives and look at old posts to see how far we've come. I was reading back through the post from our first month of OT back in January 2011 and it's pretty crazy how much things have changed since then. I have learned SO much about the purposes of OT for children with special needs and I learn a little more every time we go. Then there's Raya. Back when we first started, I really didn't comprehend why she needed OT. I knew very little about occupational therapy and what I did know most definitely didn't apply to my 1 year old. She had never been in an accident that resulted in her needing to re-learn her ADLs (activities of daily living) and she didn't have significant fine motor delays. But yeah, like I said, I've learned a LOT since then. :)
And then there's Raya. That girl has come SO far. When we first started OT, we worked on getting her to touch various textures. The only one she liked was sandpaper, and the only way we could get her to touch anything else (especially the hardwood & the fluffy soft ones) was if she was standing, sitting or touching the sandpaper at the same time. She couldn't handle going into those play tunnels, touching/sitting on/bouncing on a big exercise ball, or being on any kind of swing. And then there was the ball pit. Once she learned what the ball pit was, she would launch herself into a full-on anxiety/panic/meltdown upon the mere sight of the ball pit. The first time her OT tried to dip her feet into it, Raya reacted like she was trying to dip her feet in hot lava. The first time we actually put her IN the ball pit, her OT got in and I put Raya on her lap. She laid there stiff as a board with the look of a frightened wild animal on her face and screamed until we got her out. That was a long time ago. Well over a year ago, but I don't remember exactly when. Yesterday after she had finished her OT session, for which she was very cooperative, her OT let her play in the ball pit for a minute. The last 2 or 3 times she's gotten into the ball pit, instead of climbing in carefully like she used to, she flings herself in head first with her feet up in the air. When she did it yesterday, I just couldn't help but laugh and decided that I'd better video it and send it to her first OT who never got to see Raya get that excited about the ball pit. :)



I could watch that video all day long. I think it's hilarious but I also love seeing her thoroughly enjoy something that used to be absolutely terrifying to her. One day, maybe she'll be so enthused about eating dinner. :)

Speaking of eating, she's gotten adventurous this weekend and tried some new things. (or re-tried some things she previously hated) We had baked potatoes for dinner on Sunday. She likes potatoes but only if they're in chunks so I cooked her one and then put it in the freezer to cool it down so it wouldn't be mushy. She wanted butter on it, of course, because she'd rather just eat the margarine by itself straight out of the tub, so I put it on some of the chunks. To the surprise of nobody, she went straight for the pieces of margarine and then asked me for more. I told her that if she ate another piece of potato, I'd give her more butter. I got her to eat about 1/3 of her very small baked potato that way and the margarine she consumed in the process probably tripled the amount of calories. :) I could tell she was about done with the potato when she put a piece in her mouth and then made a yuck face and said, "Meh, I non't lite-it!" And then I heard myself say another one of those things I never thought I'd hear myself say, "Raya, if you spit out that bite of potato, I am NOT giving you anymore butter!"
Yep, she's wearing a shirt that doesn't belong to her and it's inside out and backwards.
She went to the grocery store with me yesterday and we looked for corn-based foods that we thought she might like. In the chip aisle, they have some Chester's Puffcorn (butter flavored) that's supposed to be like popcorn only without all the hulls that get stuck in your teeth. I never give her popcorn because she chokes on the hulls but I thought she might like this stuff because she likes butter. Last night we all sat down to the table and I brought the bag of puffcorn for her to have. We were eating ravioli and garlic toast, both of which she can't eat, so I offered her puffcorn instead. She saw the big kids with garlic toast on their plates and yelled, "I want that!" and then started crying when I told her it would make her tummy sick. I opened the bag of puffcorn and she got mad & didn't want any and asked for ice, so Donny got her an ice cube.

I set the ice cube on the table next to me and told her that she could have her ice after she licked a piece of puffcorn. She begrudgingly licked it. When she got a good taste and realized that it tasted like butter, she suddenly didn't want ice anymore and wanted puffcorn instead. She ended up eating about 50 calories' worth of it which really means nothing in the grand scheme of things since it was basically 50 calories of butter flavored air, but at least she ate something new! :)

I also got some caramel apple flavored candy corn yesterday and Raya found the bag and stuffed her face with it. She came into my office and tapped me on the shoulder, and when I turned around, she looked like she had bitten into a packet of fake stage blood.
The sleepy-looking red eyes add a nice effect to the picture, don't they? :) She liked it.

And last but not least, she had rediscovered bananas. Only this time she actually seemed to like it. I've tried giving her banana many times before to no avail. She has always refused them with a passion. Today though, she was asking me for "marsh-a-mallows" and I told her she had to eat something healthy first like grapes or a banana. To my surprise, she asked for a banana. I gave her a couple inches off of one end and fully expected her to taste it and say, "Meh {insert yuck face} I non't LITE it!" but she didn't. She actually ate all of it and then asked for another piece. Amazing stuff! Since she's never been exposed to bananas, we'll have to wait & see how her body reacts to them. Given our previous food experiences, I'm no longer allowing myself to get too excited about seeing her eat things but I'm glad she ate something other than crackers & dry cereal for a change. :) 
(Let me clarify that she's still below 200 calories a day for oral intake so we're nowhere near the 1000 calories she requires in a day, but finding her some variety and getting her to eat fruit is another little baby step in the right direction.)

She's still on her little hugging kick where she needs to be hugged every 10 minutes. These aren't just little love pats either, she wants to squeeze you and have you squeeze her back. I walked into the kitchen Sunday morning because I could hear the girls giggling and Kaida sounding like she was getting squished. Apparently Raya had needed a hug and Kaida was available.

Those pictures makes Raya look HUGE! A 5 year old holding a 2 year old just looks ridiculous. Funny girls!

Thursday, October 11, 2012

"I nee hudds"

"I nee hudds." This is what Raya has been saying pretty much every 10 minutes all day every day this week. I don't know why she's doing it and I'm sure if it was any other kid, I wouldn't think twice about it. Every 10 minutes or so, she'll stop what she's doing and find somebody to hug. If one of the big kids is around, she'll hug them. Even THEY have commented about how strange her behavior has been. :) They're not those little one arm patting hugs either, they're tight squeezes and she expects to be squeezed hard too. There's been a fair amount if crying this week too.
The need to be squeezed isn't the only thing that's off with her this week. She's having a bad sensory week altogether this week. Today, she was leaving off the second half of any words that were used in sequence and all of her letter sounds were really soft and slurred. I could hardly understand anything she said unless she was completely happy and concentrating on what she was saying. She's been falling down more this week, running into things, her balance has been a little off, and she's not eating as much ice as she usually does. Her teeth are probably thankful for the break. :) She's been a little sleepy too so I hope it's not a sign that she's getting sick or anything but so far, it seems to be just an off week for her sensory-wise. She had to come with me to my GI appointment this week (the apple doesn't fall far from the tree, mommy has GERD too :) and slept for the first half of it. She was still really sleepy when she woke up so she tried to curl up on a chair.
She didn't love being there but she was really good. Except that she kept pulling medical supplies out of my purse. The best part was when I looked over at her squeezing a little foil packet of surgi-lube and said, "Raya, stop squeezing the surgical lubricant and put it back in Mommy's purse!" And the doctor looked up from my chart, turned to look at me, raised his eyebrows and said, "Hmmm..lubricant in the purse eh?" Awkward... So I quickly explained that it was for G tube emergencies and I'm sure my face turned several shades of red. Moving on... I gave her more of the Raya-friendly buckwheat pancakes yesterday.

She was pleased as punch and ate 2 pancakes again! Aaaaaaaand then she licked her plate to get the last drops of syrup &a little powdered sugar.

The big kids are off school this week so we've been trying to get out and have fun. We've had 2 park days (which is about all the fun Mommy can stand. :) We played at the park this morning and then went to OT. After that we played at a friend's house most of the afternoon. She had thrown a huge for when I tried to connect her to her feed in the car so I had her lay on the couch after we got home so I could feed her. I think she was zonked before the Backyardigans finished singing their theme song. :)

In other news, the nurse called me yesterday to let me know that Raya's last labs were showing a vitamin D deficiency. I haven't gotten copies of the lab reports yet so I don't know exactly how far off she is from where she's supposed to be. We started her on a supplement for it so hopefully that will get her levels back up. I find it humorous that we live in the place where the sun shines 300+ days a year and she's lacking vitamin D. Ironies of life, I guess.

Tuesday, October 9, 2012

Icing Smiles

With all of the negative that goes on in the world, it's always a breath of fresh air to find organizations where people are volunteering their time and talents to bless the lives of others. One of those wonderful organizations is Icing Smiles Inc. Here's a description of their organization's mission from their website:

We are Baking a Difference
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.
Memories have magical powers. Long after the cake is gone, the memories linger-- memories of the kindness of a stranger, of the art of the design, of the sweet smells of a special treat, of the smiles and laughs, of a normal childhood experience so often stolen from these children. These memories are why we say, "It is so much more than a cake."

I can't remember when or where I first heard of Icing Smiles but I know it was shortly AFTER Raya's birthday last year. :) I started telling everybody I knew who might be able to qualify to receive a cake about it and this summer, we were able to see what great things these volunteer bakers do for the kids they serve.

Remember Raya's little tubie BFFs Whitney & Lily? Miss Whitney turned 2 in July and it was fun to be able to go to her birthday party & get the girls together again.

Whitney is a survivor of a Congenital Diaphragmatic Hernia (CDH). When she was born, her parents were told that she had a VERY slim chance of survival. They were living hour by hour then, and probably didn't dare allow themselves to dream of celebrating her second birthday. But Whitney is a fighter and has overcome SO many obstacles. She is truly a little miracle!

When a family applies and is accepted for a cake through Icing Smiles, a volunteer baker is assigned to the child and works with the parents on coming up with a theme and color scheme for the cake. Whitney's party theme was rainbow and Liz from Lizzie's Sweets 'N Treats did a FABULOUS job on the cake. She really went above and beyond with the rainbow cupcakes and cake-ups! They weren't just pretty either, they were DELICIOUS too!

And yes, it was all as delicious as it looked. The frosting on the cake-ups even got the Raya seal of approval! :)
It was a fun evening that was topped off by a beautiful cake that was graciously and lovingly made for Whitney, thanks to Icing Smiles and Lizzie's Sweets 'N Treats!

Next month, Raya will be turning 3 (Oh.My.Goodness, where has the time gone?!?) and we are SO excited that Icing Smiles will be providing her with a birthday cake too! The details will remain a secret until the big reveal/birthday post, but Raya is going to LOVE it. And this year, maybe she'll actually eat some cake. (Now that she's allergic to basically everything in it.) But we'll give her a pass for that night. :)

If you are a baker who would like to donate your time & talents to Icing Smiles or would like to donate funds to help offset costs, click here for information about how to do that. If you have a child who would like to receive an Icing Smiles cake, here is the information about how to apply. Thank you, Icing Smiles, for the amazing work your volunteers are doing!!

Monday, October 8, 2012

Super Mommy-1, Food Allergies-0

That's right. Score one for Team Super Mommy. I showed that possible wheat & rice allergy who's boss around here and made Raya some wheat-free, rice-free pancakes for dinner. Booyah!

She (we all) had a long day today. The big kids are out of school all week for fall break so they accompanied us to OT today. This was the first appointment in her 20 months of occupational therapy (or any therapy) that she's gone back all by herself. I usually at least walk her back while the therapist and I chat & catch up on the week but today I just sent her off with her OT. We've tried it before and it resulted in meltdowns and leg clinging but today I was sitting down in a chair and I don't think she realized I wasn't following her when she went through the door. :) By all accounts, she had a good session today.

After that, we went grocery shopping. (cue ominous music) It was unpleasant. 4 kids walking through a giant, brand new and very crowded grocery store at 1pm on a Monday is a recipe for disaster. On the bright side, I've been waiting for 11 long years for this state to get one of those stores and it finally happened! Now we can get wonderful things like tapioca flour and buckwheat flour in the bulk foods section. It's a beautiful thing.

After the pancake incident on Saturday, I really wanted to find a wheat- and rice-free pancake recipe and I'd heard that buckwheat was a good ingredient to use for that. I got some buckwheat flour and tapioca flour and googled a recipe that sounded really similar to a typical pancake recipe and got my gluten free on. I had to make a few modifications but I whipped up a batch of buckwheat-tapioca pancakes that tasted good enough that everybody else was jealous that Raya was eating them for dinner and they were stuck with leftover spaghetti. I ate 4 of them while I was cooking.
 
They definitely don't taste like regular pancakes but the taste isn't overpowering and the texture is almost exactly like regular pancakes. The proof is in the pudding though, and the pudding's name is Raya.
 
She ate 2 whole pancakes plus a couple bites of a third pancake. While I was making them, she was whining that she wanted "marsh-a-mellows" and hanging all over me. (no nap today, btw) I said, "Raya, do you want to eat pancakes for dinner?" Her face lit up and she got all excited and said, "I eat pancakes? I want pancakes!" She couldn't wait to take a bite (I couldn't either) so I broke off a piece and blew on it to cool it off and then we both ate a little bit of it. I liked it. She moved it around in her mouth a little bit and then said, "I wite it! I want more pancake!" Those words were music to my ears. :)



By the time I did the video, she was pretty much done eating but it was still exciting to see her that happy about food. Now that we've conquered pancakes, we'll branch out to other things. In case anybody else needs a gluten-free/wheat-free, rice-free, dairy-free pancake recipe, here it is:

Buckwheat Pancakes
3/4C buckwheat flour
1/4C tapioca flour
2T sugar
1/4C flaxseed meal
pinch of salt
1 egg (or equivalent egg replacer)
1C coconut milk
2T corn oil (or any vegetable oil)

Preheat pan to medium heat and spray with cooking spray. Mix dry ingredients with wire whisk breaking up any lumps (especially the tapioca flour). Add in beaten egg/egg replacer, coconut milk and oil. Mix until well blended. Pour approx. 1/4 batter into hot pan. Cook until bubbles break on the surface, flip and cook until done (about another minute).

Next time, I'll add cinnamon and vanilla like we normally do when we have pancakes. I might also change the ratio of buckwheat to tapioca flour next time and see how that turns out.

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