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Wednesday, May 28, 2014

Like a car in desperate need of a tune-up

You know how sometimes you can tell when your car is due for an oil change? Nothing is blaringly wrong but you kind of feel like it's not running at peak performance. That's how Raya has been for a few weeks now. February was just flat out rough after having that hospital-worthy UTI and a week of high fevers, followed a couple weeks later by a cold. All of that took some time to recover from. Then she had a good week or so in March and then got a teensy little stuffy nose and all of a sudden her stomach shut down. Not completely, but to the point where she could no longer tolerate the 2 hour long, 8 oz bolus feeds and has been on 16 hour a day continuous feeds since then. After we slowed her feeds down, she did great for about a month. She was eating more often, eating more food at a time, and just generally doing well. She had lost 22 ounces between February and March so we increased her total calories from 1100 to 1250, and I stopped counting food calories and subtracting them from her formula calories. Things were great for a few weeks and then for no apparent reason, she started going backwards again. She's had a gastroparesis flare (meaning her stomach is emptying even more slowly than before), acidic diarrhea, oral intake almost back to nothing, not swallowing the food she does ask for, complaining about stomach pain daily, poor quality sleep, increase in behavioral issues, constantly clearing her throat, and just overall not doing as well as she had been. So yeah, girlfriend was due for a visit with her wonderful GI doctor.

To start off with the good news, after increasing her formula calories and not counting her food calories in her total, she managed to gain over a kilo since the end of March. If I calculated it right, she gained about 2 lbs and 12 ounces and is now up to 16.1 kilos. That's her new all-time high for weight. That made me feel better because A) she gained weight finally, and B) I was feeling like a weakling anytime I picked her up and carried her but now I know it's because she's heavier. Whew. She was 101.99 cm tall, so another centimeter taller since March. We are very happy with her growth. Haven't been able to say that for a while.

The appointment was great. As time goes on, I am more and more thankful for her doctor. It is so much easier to deal with disappointments and setbacks when you know that you have a good relationship with a doctor who is as disappointed about  those setbacks as you are and just wants to do the best they can for your child. On days like today, I have major anxiety leading up to the appointment and then as soon as she walks in and we start talking, I feel instant relief.

I wish I could say that we made a lot of progress and figured out what to do about all Raya's recent problems, but unfortunately there's not much we can do about a lot of it. The stool problem has been more and more problematic. She's FINALLY showing us that she's aware most of the time that she needs to go, but her stools are so loose (and have gotten more loose lately) that sometimes it just sneaks out before she can get there. She is trying, which I'm grateful to see, but it's really tough for her because of how loose her stools are. Not only that, but it's been getting more and more acidic because her formula is moving through her too quickly. If we don't get her cleaned up immediately, it burns her skin. This happened once before and we switched her to a peptide-based formula instead of the elemental Neocate, but we can't put her on any of the peptide-based formulas because they have hydrolyzed whey protein in them and she did not tolerate it. In order to try and combat the "rapid transit" problem, we are going to try giving her liquid loperamide (aka Immodium) and see if that slows down her bowels without making her gastric emptying worse. I hate adding in new meds but this is a problem that is making her feel lousy and if the Immodium works, so be it.

Next problem: gastroparesis flare. Raya has had delayed gastric emptying problems her whole life. Motility waxes and wanes, and right now hers is worse than it's been since she was probably 18 months old. Putting it in those terms stings but it's true. She wakes up late at night feeling yucky a lot. Last night she wanted me to empty her stomach so I plugged in a catheter bag and let it drain. The bag was full at 160ml and there was still more coming out, so that was at least 2 hours' worth of formula that looked and smelled completely undigested. There are really not many options for motility medications. We've tried most of the ones that are FDA approved for use in the US and really didn't have great results with any of them. We had talked previously about trying a GJ tube again. That was brought up again today and her doctor feels like we should not do it right now. If Raya's motility gets worse and she stops tolerating what we're doing right now with her feed schedule, we will have to go back to the GJ. I'm conflicted about it. On one hand, I think she could probably tolerate a higher feed rate to a J tube than she currently is to her G tube, which would mean less time on the pump. However, there are a few more risks with a GJ than there are with a G tube and there's a good possibility that she would have the same kinds of issues she had with her GJ tube before with bile backing up into her stomach. I agree that we are not to that point yet but it's still frustrating to not be able to do anything but sit and wait. For now, we will keep following her lead on eating food and keep using Farrell bags at night when she needs them.

Next problem: constant throat clearing. She clears her throat a LOT. I was pretty sure that it was related to post nasal drip from the bad allergy season we've had this year but she's been on Zyrtec for a while now and I haven't seen much change. Her doctor looked in her nose today and said that she didn't see any signs of post nasal drip, which means that the most likely explanation for the throat clearing is reflux. That theory fits in well with the gastroparesis flare because the more she has in her stomach, the more there is available to reflux up into her esophagus. It also probably explains why she has been having the occasional spitting up episode. What can we do about it? Nothing. Reflux meds make things less acidic but they do not stop the physical action of the stomach contents refluxing up into the esophagus. If we can get her stomach working better, the reflux will probably improve too.

It had been a long time since we had done any labs, so after she had a look & listen, she wrote orders for bloodwork and stool tests. I meant to snap a picture of the lab order sheet so I'd remember what all she ordered but I forgot to do it. I also forgot to tell her that the allergist had wanted to throw in the immunoglobulin labs so I guess we'll just have to get them next time we see him instead. I know she ordered a CBC, hemoglobin, vitamin D, zinc, and something to look at liver & kidney function, and then the stool tests to look for signs of inflammation or c. diff that could be affecting the diarrhea issue. Everything was peachy until it was time to get the blood drawn. Lab techs never listen to me when I tell them she's going to be a hard stick and a bad bleeder. They look at her veins and say that they think it will be fine because they can see a nice vein or two but inevitably, I'm always right. Although I have definitely gotten more calloused to it over time, holding her still to get blood drawn just sucks. Today she kept screaming, "Mommy, let go of me! I don't want pokes!" So that made me feel like crap. It took 2 pokes and a lot of digging around to get the blood they needed. I got really irritated when the lab tech kept implying that it was Raya's fault she couldn't get blood. She kept saying, "She really needs to relax her arm. I'm just right there and then she tenses up and nothing will come." Um, sorry but she's friggin 4 years old and you're digging around in her arm with a needle and you expect her to relax her arm?!

The labs should be back in about 5 days and hopefully I'll be able to collect the stool samples that we need tomorrow so I can get them in. One needs to be refrigerated and one frozen. I shall pause while everyone finishes gagging. Blech. Tomorrow I'll get the prescriptions for the Immodium and the super-duper bum ointment filled and hopefully the combo will help her feel better.

How am I feeling about everything? Frustrated. Stagnant. Kind of like running on a treadmill. We're trying to do everything we can to get her back to where she was but when it comes right down to it, her body is in control of the situation, not us. There's a part of me that wants to say, let's fly somewhere and have motility testing repeated or get into a cisapride trial or something, but I think those are the thoughts that come when I'm feeling desperate. I want to fix things but sometimes you just have to leave things alone and give them time. We know we can fall back on the GJ option if we need to. If things get worse, we have a plan and that's what I have to focus on to keep from being sad.

To end on a lighter note, this girl is so darn funny. She says things all the time that make me laugh. When we were driving to the appointment, she told me that I had not done her hair the way she asked me to. She said she had asked me to do a ponytail on the side and one in the back. I had put the front part in a little ponytail and then put all of her hair back into one ponytail in the back. That was not what she wanted. I explained to her that I knew what she wanted but that when we go to some places outside of our house, our hair needs to be done nicely and our clothes need to match. She laughed and said, "Oh, okay Mommy. So you mean my hair needs to be in ONE ponytail because if it was in a ponytail on the side and a ponytail in the back it would look silly. But I would still be adorable. Because I'm so adorable."

We got into the exam room and I was helping her change into a gown. As I went to pull her skirt off, it was stuck, and I realized she had put some toys down the front of her skirt again like she's been doing lately in the absence of pockets. I started pulling toys out of her skirt and it was like watching clowns climb out of a clown car. There was a pig, a sheep, a dinosaur, a huge dragon, and the antenna from a remote control truck shoved down the front of her skirt. As I pulled each toy out, the medical assistant and I laughed harder and harder. The dragon was stuck on the stitching inside her skirt and ended up tearing a hole in the diaper she had on. I don't know how she could stand having all that stuff in there, especially while she was buckled into her carseat. After I had taken everything out and got her gown on her, she whispered, "Mommy, I brought them so that I wouldn't be bored." And then she gave me this Vanna White pose:
This is my Raya. This is the sweet, funny, adorable, charming little girl that I love with every part of my soul. It gets hard dealing with medical stuff day in and day out and not being able to control or fix it, but when this part of her comes out, I just canNOT help but be absolutely in love with her and have a whole renewed determination to keep plugging away and do the best I can to help her feel good and be the best Raya she can be. It may seem trite but I am so thankful for the ability to take pictures and videos like this that capture those endearing parts of her personality. They are what gets me through the really difficult days, which have been more frequent lately.

*sigh* well that was long but it's mostly so that I will have everything documented and remember things in 2 months when we go back. I hope things will start to get better, but I also realize that they could be a lot worse and I'm grateful that she's not doing any worse.

Friday, May 23, 2014

Our busy month of May

I started a blog post about our girls' night at the end of April while the boys were camping but then my life got ridiculously busy and my computer started its steady decline until it became pretty much completely useless, so I didn't have access to the pictures from our fun night. I will finish that one soon though. The last month or so has been just downright exhausting. Between the lack of sleep and all the craziness of the end of the school year, I've been doing what I had to do to get by and not much more. Here is a brief summary of the last month:

4-28-14:
This is what you get when you ask a 4 year old how she wants her hair done for school.
This is how the conversation went:
Me: How do you want your hair today?
R: I want a ponytail and a braid.
Me: Um, okay, so you want me to do a ponytail and then braid it?
*puts hair in ponytail*
R: No, I want a ponytail and a braid.
Me: Okay, it's in a ponytail. Do you want me to braid it now?
R: NO, I want a ponytail AND a braid! *pout pout pout*
Me: How am I supposed to do that?
R: I want a ponytail and a braid NEXT TO EACH OTHER. *still pouting*
Me: Sooooo you want part of the ponytail in a ponytail and part of it in a braid?
R: Yes.
Me: Okay, do you want a regular braid or a twisty braid?
R: Twisty braid.
Me: There you go, it's a ponytail and a braid next to each other.
R: *smile* Hee hee, thank you Mommy!
 
 
 
Another bump in the road the last couple months has been that our previous respite provider found a new job and we had to find a new provider. She put in her 2 weeks' notice on a Monday in mid-April but said that she could keep helping us out on Mondays until we got someone else. Unfortunately, she apparently did not mean that she would be coming for the full 2 weeks. She was coming Mondays and Wednesdays, so she came that Monday & Wednesday and the following Monday and I had planned a whole bunch of errands for what was supposed to be her last Wednesday since I didn't know when we'd be able to find someone new. When she was leaving that Monday, she said she'd see us the next Monday. When I asked her what she meant and if she was coming Wednesday, she said, "No, remember I put in my 2 weeks' notice?" Um yes, I remember that but I took it to actually mean 2 FULL weeks. There had been some attendance issues anyway and that was kind of the straw that broke the camel's back for me. Sometimes even though it can be inconvenient, change is a good thing. She's super sweet and Raya loves her and will miss her. They have been great buddies. We were able to find a new provider who is able to do respite and habilitation for us and I think this will be a positive change. I just feel bad for our new provider because she kind of walked into a mess with how off things have been with Raya. Aside from the emotional/behavioral issues, her GI tract is not at its best right now and although I don't think she's in imminent danger of having to do anything crazy, things have definitely declined recently. All things combined, it was kind of out of the frying pan and into the fire for the new provider.
 
 
 
 
5-2-14, first swim of the season in FREEEEEEEZING cold water!
 
 5-4-14, "I'm being a kitty, Mommy!"
 
5-8-14, She fell asleep sitting up

 
On Friday, May 9th, Raya got to have water day at school. She was SOOOO excited! I volunteered to come in and help so that I could unplug Raya from the pump while they played in the water and then plug her back in after. I think we were all more comfortable that way. They had about 6 different stations so they divided the kids up into groups and rotated them.
the bubble station
 
It was cold and slimy!
 
Raya has trouble puckering her lips up to blow bubbles sometimes so she was excited when she got a few.
 
The next station was some kind of relay race but nobody really knew what was going on so the kids just kind of messed around until it was time to switch. Raya and her little friend cleaned frisbees with sponges. :)
 
The next station was drawing with sidewalk chalk. I had Raya write her name and then took a picture of her with it but she couldn't look at me because it was bright outside.
 
After the sidewalk chalk, the kids went to the station with a wading pool full of squirty toys. That one got a little wild. The water was really cold so the kids were a little hesitant to get wet.


The second to last station was a bike washing station. I thought it was genius! They had put one of the big tricycles into a wading pool full of water and sponges and let the kids "wash" the tricycle. It was one of the most popular stations!
 
The last station for our group was the fishing station. This one was Raya's favorite. She LOVES taking little toys like these fish into the tub with her so she was in heaven with the little fishing net catching all the fishies. The only down side was that there were only 3 nets and there were more than 3 kids.

After they were done, most of them were freezing. It was 9:00 in the morning and unusually cool for this time of year, and almost everything they did was in the shade. When they finished playing, they all got cozy in their towels and had Otter Pops. I think it was the only time this year that Raya got to have exactly the same thing her classmates were having.
 
I know she doesn't look too excited about it but that's because she wasn't sure how to go about eating a popsicle in a plastic tube. She had a few bites and then handed it to me but she liked what she ate of it. 
We took the kids inside when they were done and helped everybody change out of their wet clothes. They watched Finding Nemo while they waited their turn. It was kind of funny to sit and observe in the classroom. There is a LOT of energy in that room! The kids are so cute though and so funny!


On Saturday, 5-10, we went to Donny's parents' house for Mother's Day dinner. Raya was running around and got a throw pillow caught on the zipper of her feeding pump backpack. Tubie problems. :)


Grandma and most of the grandkids

Loud kisses from Grandpa are a right of passage in this family :)


Mother's Day was pretty good. I have to say that although I have many wonderful reasons to celebrate Mother's Day, it's hard to be in too celebratory of a mood when I think about all the people I know for whom Mother's Day is a reminder of painful trials in their lives, whether it's infertility, loss of a child, or loss of their own mother. It seemed like this year, it was taboo to actually post anything celebrating Mother's Day on social media so I stayed away from the internet for the day. I did manage to get a few pictures with the kiddos but since my new computer is not up and running yet, I don't have access to them right now. I do have a growing collection of pictures like this though:
"Mommy, take a picture of me and Piper!"

Late in the afternoon on Mother's Day, I asked Cole when his end-of-year science project was due. In a calm, nonchalant tone, he said, "It's due the 12th." To which I replied, "Cole, do you realize that TOMORROW is the 12th?" His facial expression was sheer panic. Thankfully we had already been planning the project and knew what we needed, it was just a matter of putting it all together. The assignment was to think of a problem and then come up with an invention to solve the problem. He decided to invent a room-cleaning robot. Being that it was Mother's Day, I turned the project and the boy over to Donny. :) I think this was one of those times when we found ourselves very grateful for random medical supplies that were laying around.
5-11-14, hard at work on the "Job-Bot"
Drumroll please.........
The body is made out of a protein powder jar. The legs are Neocate Jr cans. I had the wheels from one of those little plastic dressers. The arms and head are corn and bean cans and water bottles. They used a formula scoop for one of the hands because the robot is supposed to be able to pick things up off of the floor in his messy room. For the other hand, we used a piece of a Kangaroo Y-site adaptor like we sometimes use to give Raya meds with when we're using a straight port extension tube instead of a Y port. That hand is supposed to be a vacuum. The eyes are a washers with little black plastic buttons, the hat is the scoop from the protein powder, and the mouth is a picture hanging bracket. On the back, we glued a little mesh bag that the robot can put dirty laundry in. We also left the tops of the cans open so that the robot can put garbage or things that need to be put away in other places into the cans.
We thought it turned out great and it was a fun project, even if it was inadvertently left until the last minute. :)


Raya has started asking to hold Piper again and asks me frequently to take her picture holding her. Sometimes I feel kind of bad for Piper because Raya is an in-your-face kind of girl and she LOVES her baby sister. It used to be that Raya would hold her for a few seconds and then be done but now it's the other way around and Piper is the one that only lasts a few seconds.
5-13-14

Raya's new favorite skill is closing one eye at a time. It cracks me up every time! One afternoon she walked up to me with her face all scrunched to one side and said, "Look, Mommy! I can close one eye! Take my picture."

She had kind of a rough morning that morning but had a pretty good day at therapy and by the afternoon, she was pretty happy. I was exhausted so that was one of the few days that I gave myself permission to lay on the couch and attempt to take a small nap. I let her play with my Legos and she informed me that all her guys were racing.
5-13-14, and no, she didn't build any of the little cars, she just stuck them together with the long pieces :)

I have wanted to do another trial run with quinoa to see if her body can tolerate it but every time I've decided we were going to do it, something happens and we can't. I decided to just go ahead and do it last week though, so we threw some quinoa in the Magic Bullet and ground it into flour to make quinoa pancakes with. She enjoyed helping with the project but had very little, if any, interest in eating the pancakes. She just doesn't feel like eating these days and is down to practically nothing by mouth again. Frustrating, but not much we can do about it.
5-15-14, making quinoa into flour


Last Friday, she decided that one skirt wasn't enough when she got home from school so she put on another one. She couldn't understand why I told her that she could not wear 2 skirts and a pair of leggings but it was over 100 degrees!


One of the new favorite things to fight over in our house is who gets to change Piper's diaper. For hygiene reasons, the only one of the kids that I've been letting do it is Ashtyn because she's old enough to be thorough about cleaning her off. Unbeknownst to me, Kaida and Raya changed her diaper one day and it's a good thing I noticed because she only had one cheek in the diaper. :)
 
Piper is definitely the most popular person in our family these days. I never lay her on the floor like I did with the other kids because I'm afraid she will get mauled. Mostly because she DOES get mauled. I got a tummy time mat from a friend last week and the second I put her on it, all 3 of the girls were right there on top of her. 
5-17-14
She really does not like being on her stomach but I managed to get a picture of her on her stomach and not crying.
5-18-14

I do try to let the kids help with Piper where I feel like they can, so one evening when it was time to get her pajamas on, I let Cole and Kaida do it. She loved the attention from her big brother & sister and they got the job done. :)
5-6-14
 
Raya's last day of school was on Wednesday. It was bittersweet for me. She LOVES school and I'm afraid she's going to be bored over the summer. There really has never been a time when she has not been very scheduled, between therapies, doctors, and school, so it's an adjustment for her to be home all the time. On the bright side, I'm really looking forward to not having to get up and drive to school. I'm still getting up during the night with Piper, or to pump, or with Raya, or all of the above, so some mornings I just don't want to get up when it's time for school! Anyway, little miss fashionista decided that she really needed to wear a sweater to school that day. She told me that it was because she wanted to surprise her friends & teacher with the Hello Kitty shirt that was under the sweater, which also meant that the sweater had to be buttoned. Since it's Arizona and it was a very comfortable morning and was supposed to be about 90 degrees, I let her wear it to school and took it off before I left her there. I brought her out on the front porch to take her picture and the poor girl just can't handle sunlight, so it looks like she's all sad and sullen but really, she was just squinting.
I was a little bummed that her class didn't do anything to commemorate the end of the year like the classes did last year. It was a normal school day in their classroom. In a way, I think it's easier that way to not get all sad and mushy about it but I don't think it has sunk in for her that the school year is over. I am 99% sure she will have the same teacher next year and that is a HUGE relief for me because it means we don't have to go through the whole process of educating about her feeding tube and food allergies with a new teacher. It's been a good year for her!

Yesterday was the last day of school for the big kids. Traditionally, the kindergarteners do a program on the morning of the last day of school, so I packed up the two little girls and we headed over. We couldn't see Kaida very well from where we were sitting but I could tell that she looked pretty glum. She had come in my office a couple nights earlier just sobbing, and said that she doesn't want school to be over and she just wants to live with her teacher. It was precious and I'm SO grateful for a teacher that has shown her so much love and kindness. The program was cute, as always. They sang their "1st Grade" song to the tune of "Start Spreadin' the News" and then it was over. The teachers took each class to a different part of the room so the parents could sign them out, and when Kaida came out to find me, the poor little thing was just bawling her eyes out. I have never seen a child so heartbroken over the school year ending! We had to go find her teacher so I could sign her out and she clung to her leg while I signed the paper. After that, we had to go to Cole's classroom for the little talent show they were doing so we could watch him do his karate form. He did awesome and if he was going for shock value, he certainly had it. I don't think his classmates have seen that side of him before. :)
When Cole was finished, we started to walk towards the office to sign out. It kind of hit Kaida again that we were leaving for good and she started crying again. Like any nice mother would do, I offered to take her out for fast food to soothe her aching heart. :) We don't do that very often (like, EVER) so it was a good treat. She picked Chick-Fil-A because Raya can eat their fries without getting sick. She is still sad, but she felt better as the day went on.


Aaaaand then the fighting started. Oh my heavens, they bickered all afternoon! Donny worked a late shift and I had promised them pizza and ice cream for dinner so that's what we did. I threatened to make them stay home and eat burritos for dinner but I decided that the fighting was probably at least partly because they were all a bit sad or emotional about school ending, so we did it anyway. I am so cool that I even let them eat ice cream BEFORE the pizza.

Today was pretty bickery too. It felt like a Saturday since they didn't have school and I didn't get much sleep last night at all, so we all had a pretty lousy day. I was late getting Raya's pump going this morning and that set her up for a major meltdown. We had to drop something off at a friend's house 20 minutes away and she literally screamed and yelled the entire way there. About halfway there, I looked in the rear view mirror and noticed that Kaida was sitting in the back seat with her hands over her ears and crying. That totally made me feel like crap too. Sometimes I lose sight of the ways that Raya's issues affect the other kids. It was a long day but hopefully we'll start off next week better and have a fun summer and not strangle each other. Raya has a GI appointment coming up this week and it's one of those times when I'm really looking forward to it because she needs to be seen. Hopefully her doctor can figure out what to do with her because I'm at a loss.


Wednesday, May 14, 2014

Still here......barely

In case anybody is still reading this poor, neglected blog, we are still here. Life has been very, very busy, i'm not getting enough sleep, my darling fifth child likes to be held all the time, Raya has had a really rough couple of weeks, and my computer is dying. It is also the end of the school year so there have been a few little incidents this past week with big projects being due and children forgetting about then or not realizing that the due date was upon them, so yeah, not much time for blogging. I will be back soon though. In other news, this sweet little thing is 3 months old today. *sniff sniff* it's going WAY too fast.
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