This Is Super Cool

Just an ordinary 3 dollar backpack, right?

WRONG! Totally not ordinary. This backpack was specially modified by her mommy specifically to fit the needs of her on-the-go tube feeding! Check it out...

I cut a slit so there is an opening for the pump to just slide right into the front from the big part of the backpack so the pump has its own space

And then I added a cute little button tie down for the nozzle of the feeding bag.

Then i cut a little slit out the side for the hose. and yes, I did make it so it wouldn't fray and omg. that was not easy.

and because the straps weren't padded, I made some really nice little cushy cushy shoulder strap pads (it says Butterfly Princess)

When she gets up in the morning, I'll be sure to show a pic of her modeling it!

AND... all the modifications were HAND MADE/HAND SEWN! Including the embroidery (minus the flowers they were patches.

Yes, i'm bragging. i'm so happy that I was able to do this. Thanks so much to YouTube and a little bit of help from my mom. She is super Stoked... now she doesn't have to have that nasty green one... it's not bad, but Q is a princess and needs a princess bag.

I decided that in my free time, i'm gonna go and buy some more 3 dollar mini-backpacks and make some tube feeding bags and donate it to our children's hospital. I think they would be so grateful and I'd hope it would make one kiddo feel super special. Especially a kiddo that just got a new tube... how cool would it be to help ease their fears, even just a little by giving them a very special surprise :)

Ok. it's almost midnight and I gotta be up by 6am. time to get to bed.

Another Full Week

 Tomorrow marks another long week. Quinn's overall health seems to be so awesome the past two days! I wish all days were like this. These good days are the days when I look at her and think.... hmmm, i think she can come off her oxygen now, or how about no feeding tube since she seems to be tolerating more volume? or how about we start weaning her from her seizure medications? but, i know better. Quinn is probably only doing well for two reasons, A) this is the Mito Monster, playing games with me and trying to get the best of me and her. and B) she obviously needs the treatments we are doing and they are obviously working in her favor right now. and so, i have learned my lesson and Quinn is doing great right now, which is incredibly awesome.

we get to start school again tomorrow... omg! let's all cross fingers and hope that she gets to spend at least 3 days in school this week! She gets to go tomorrow, then she gets to go on tuesday if everything is well. But wednesday, we have a busy day as we will be traveling to the children's hospital for her UGI early in the morning and then she has her neurology appointment later that day. So it will be an all day event. If we get her prescription for her medical stroller, i'll probably try and see if any of the medical equipment stores down there will honor the script without having to go through PT. And Thursday, she has her surgeon to follow up with the results of the UGI and determine what the best route would be as far as surgery goes.

Though Quinn's motility seems to be pretty good the past two days, I know it's still sucky because every morning she wakes up with tons of formula still sitting in her tummy. She's on a high cal formula and she can only tolerate 30ml/hr right now. Seems to be more beneficial if i just keep her on it 24/7, but she loves to eat and she can't tolerate the formula plus tiny bits of food throughout the day so I just keep it on a 12 hour drip at night and then take it off her until late afternoon then she gets it for about 4 hours. So she's still getting a decent amount and she is actually gaining off it! So that's definitely a plus side considering that she was just skin and bones not too long ago. Another thing is that she must have Mirilax twice a day and generlac 3- four times a day just to get her to poop on her own once every couple days, plus we give her prune activia yogurt and lots of special probiotic foods daily and obviously her motility med every 6 hours. So... yeah... sucky motility.

With Quinn having so many good days, my daily thoughts remain heavy with a dear family that lives in Texas.

I wanted to encourage everyone to continue prayers to the Knight Family. Missy has been a long time online friend of mine and we have spent countless hours over the phone in Sammy's earlier years discussing our children and how similar they were, this was before we found out that Sammy had Mito. I have always looked to Missy for advise about Quinn and she has always extended a tremendous amount of information, support, love and hospitality, even during some of Sammy's most challenging days. I have never met them in person, but this family has always been near and dear to my heart and it sickens me to even imagine how much pain they must be in. Sammy and his family have touched so many lives and he was a brave mito warrior who will truly be missed.

First Day at School, Out for a Week

So, yesterday Quinn told me that she was itchy all over and I just thought she was being really silly. But at dinner time, I noticed that she had spots on her hands and I was like... Quinn, you weren't being silly, you were telling the truth. It wasn't that bad and I just thought that maybe it was a little allergic reaction to something. This morning, she woke up and it didn't get any worse than it was yesterday. So, I took her to school anyway.

She had a BLAST! the teacher was really great about explaining how Q is just like everyone else, but she just needs some help breathing and the told them not to touch her oxygen and Quinn was ok with being the center of attention for a little bit. She clapped and danced and sang with all the kids. She had her friend Brooke in school too and Brooke was so sweet! She showed Quinn around. Quinn wasn't as nervous with a familiar face to help her, otherwise I'm pretty confident she would have hid behind my butt for most of the morning. It was an easy transition. The teacher was at first really weary about Q, but she got the hang of Quinn and Quinn was having a pretty good day today too so that helped her to see Quinn's "normal". I won't be taking her to school when Q is having a bad day, but she can sometimes have an "off" day and she will see how that is like soon, i'm sure. but today, she got to see Quinn's "normal", which is still a little off-balance, but it doesn't stop Quinn at all. I can see though, from how she was last year to how she was today, this "normal" would have actually been quinn's "off" days last year. but like I said, it's ok she is fine. THANK GOD FOR WOODCHIPS!!!! Quinn was starting to run and of course didn't pick up her feet or anticipate the uneven surface of the ground and she took a really nice little digger into the woodchips. like her face bounced off the ground. If that was concrete, pretty sure we would have seen some teeth go flying everywhere, but... whew! I told Q she had to be careful and not to run on the concrete, only on the woodchips.

But, when we came in from outside, her rash started to become very noticeable and spread all throughout and on her face and legs... teachers took notice and we figured it was probably just an allergic reaction. It was almost time to go anyway so we just kinda figured that if it got worse, i'd take her in to the doctor. Well, it got worse... so we saw the doc about an hour ago.

It's definitely not an allergic reaction. It's viral. Q's throat was red, she developed a cough, she was slightly feverish, but still acting fine and the type of rash wasn't an allergy type of rash. It's a bunch of red dots everywhere. They are not really raised, they are not at all itchy. The doc said the problem with it being viral is it rocks the immune system, which makes her more susepctible to bacterial infection... lovely! So, we have to keep her out of school for a whole week now. :( Plus, I'm sure having a little four year old running around with an unknown rash wouldn't go over well with all the other parents. lol!  Better luck next week.

Finally going to school!

We finally get to get Q started in school. Geeze! what an ordeal! We finally had our meeting with the school nurses and the staff at the preschool. They were really grateful that I had video of Quinn's new types of seizures. Those are probably the ones they will be seeing the most of, honestly. The school nurse was Q's last year too so she knows Q's case and helped the staff to understand Q's care. It was a little difficult to hear what she thought of how Q has developed over the past year. Last year at our first school meeting, I explained to them that I felt that Quinn was growing out of all her issues so although we needed to develop a plan for IF things were to go wrong, I didn't feel that it would be very necessary to have to carry out. Turns out that school took quite a toll on her last year and the nurse explained to them about how the teachers called her to voice concerns for how Quinn had basically deteriorated from how she was at the beginning of the school year, to where she is now. Quinn was coloring during the meeting and seemed to be doing quite well, but then she got incredibly tired during the meeting and passed out in my arms. The nurses asked me if she was alright and I just told them that this was her new baseline. She is a lot more exhausted than she was last year and a little more spaced out. But I still want her in school. It was written in her plan to go allow her to take a small nap if she ends up just passing out like she did during the meeting. Mainly because unless your eyes are on her 24/7, you will not know whether or not she passed out from a seizure.

The teacher seemed a little overwhelmed with her care, but I assured her that Q was very adaptive and her brain is just like all the other children in the class. She just has some obstacles in front of her, but that still never stops her. We rigged up a stroller for her to push around with her o2 tank so she can be more mobile and other children don't have to trip over the tubing. We also talked about how Q is very in tune to her own body and she will actually walk up to the teachers and say she doesnt' feel well. I told them that when this happens, it usually means she is going to have a seizure or she is feeling dizzy and disoriented. Or her stomach just really hurts. She just needs a break if this happens until she seems to be feeling better. I asked them not to limit her. Just to be aware of her issues and treat them accordingly, just like we do at home. The teachers at the other preschool last year were really awesome about all this and it does seem like a lot to do, it's really not. It's just about reading her daily. I let them know that I would keep her home if she is having a bad day.

We also talked about her transition to Kindergarten, already! they said that children with special needs should start paperwork almost a year prior to admitting. I can't believe it! My child will be going to Kindergarten next year! They explained about how Quinn should have an IEP... right now she is just on a 504 plan (which is not an IEP, it only addresses medical issues). The 504 plan is limited, from what was explained to me, and they felt that she would benefit more from an IEP. Our IRC worker said the same thing. We are so lucky to have all these people working together to form a good plan for Quinn. I don't even realy have to do anything when it comes to that. they are all in contact with each other. 

Quinn gets to start on Monday! I am to stay with her for the first couple of days so the teacher can get a feel for Quinn's "normal" and ask questions as the pop up. But after everything, she said she was very comfortable with the idea of having Q in the class and that she was really looking forward to having her. Quinn and Mrs. D seemed to really get along very nicely too! I feel comfortable with this. Quinn also has a friend that is in her classroom. Her name is Brooke. Brookes mom and I are good friends as well (we planned it this way! ) So I know they will do fine. Brooke is a big help with Q's stroller if she is having a hard time pushing it around. I think also i'm going to see what i can do to make it a little easier to push. the wheels on the front don't turn and the tank slides around in there a little. I'll probably replace the wheels and try and make a more snug space for the tank itself.

I am so happy the Quinn has a very strong immune system! She is rarely sick with infection, unless it has something to do with her stomach. But seriously... 4 times a year for a fever is really good considering all the bad things that can go wrong with her. This is a HUGE reason why i'm totally ok with her going to school. She fights off illness like a champ and wins every time. I hope this year is no different when it comes to that. She faces a few new challenges this year, but I'm confident that she will do fine. I am so excited that she gets to go to school.

One of the nurses said to me before we left that it's just amazing that I allow her to come to school. She said that most parents would not allow their children to be at school with as many overwhelming obstacles that Q faces. But if her immune system were crap, i'd probably think about it a little more, but i think she needs social interaction, her brain is so normal and I don't want to treat her any differently, so why wouldn't i put her in school? I was told that I'm a good mommy.... which makes me all warm and fuzzy inside. (at times I do question if i'm doing what's best for Quinn) So yeah, Q gets to go to school... WEWT!!!!

We finally had our surgeon's appointment, the latest:

I arrived at the surgeons office today and went to check in and started to get super heated when the receptionist said that she didn't see Q on the schedule for today. I was like ..... about to start cussing ppl out. So I calmly told her who I spoke to last week about how the surgeon had an emergency surgery and so our appointment for last week was canceled and we were told to to come in today at 2pm. She had to walk in the back and check with some ppl and finally we got the ball rolling. Whew! I was about to be so mad because we just don't live that close to the children's hospital.

So, we had our appointment with surgeon today. This guy who does Quinn's surgeries is amazing! He does not want to do anything unnecessarily, and i really like his approach. but we know that Quinn needs help, otherwise she would not have been referred to surgery. He said that he just wants to see if there is something else going on that could be fixed so she doesn't have to have a j-tube. One of his biggest things is he wants her to be able to eat by mouth, regular food, food that every human being should be allowed to eat if they damn well please.  since the problem seems to be an emptying issue, he wants to do an Upper GI series to see if that is truly what it is. He thinks she might benefit from something called a pyloroplasty <--- pretty sure that's it. He said that there's a little thing in the opening of the intestines that opens and closes to let food in. Sometimes, this opening does too good a job and doesn't let the stomach empty at a feasible rate. The only thing is that this *might* not work the way it should and could result in dumping, which is where the food just goes into the intestines without digesting and just comes right back out. This results in pretty much the same pain and discomfort and we are trying to fix. But, he doesn't want to do that unless he knows that's what the case is. Otherwise, we discussed the separate J-tube procedure, which quite honestly, i do not like. He said that we cannot just go directly into the intestines because food can get stuck on the tube and it still clogs up the passageway and so he would have to cut the intestines, create a separate route for the tube itself  and then reconnect the part that he separated to a different part of the intestines. to me, this seems incredibly invasive and I can foresee there being some potential complications. At this moment in time, Q is only tolerating 35ml per hour, she is having seizures, which may or may not be connected to the digestion issues and she is having intermittent periods of pseudo-like episodes, plus, she is not gaining any weight. Obviously, any of these surgical options will not fix her stomach motility, but they do have the potential of making it worse (ie: an insult to the gut could just cause her stomach to go haywire and shut down) This is something we do not want to happen and so we have to make a decision on what is the right thing to do here. Quinn's stomach, I think is a lot of the causes for her issues, she bloats up, has difficulty in breathing, gags and retches... etc... so either A: we fix this problem, by possibly doing the pyloroplasty if that seems to be contributing or B: we surgically place the J-tube and hope for the best. I think A: is our best option here and I hope it is an option for her. One of my biggest fears about this is them doing the pyloroplasty and it not working and then having to go in there again, reverse everything and place the separate j-tube anyway. That would suck.

We also discussed Q's paraesophogeal hernia. she has one from her nissen fundoplication, however it hasn't caused her any problems that we know of. the doc said that this upper GI would allow us to determine if this needs fixing as well. We are hoping to get the upper gi done in the next two weeks as well as scheduling our follow up appointment for what the best plan of action would be. so, all in all, we will not know what needs to be done surgically until she completes the Upper GI series.

They also had a really fun time commenting on her anatomy. Quinn has a pectus on her chest, this is basically a defect in her ribcage. The middle of it caves in forming a nice little pocket in the middle of her chest. Hers isn't that significant, but it can be contributing to that chest pain when she gets all bloated like she does. or the chest pain could also be from possible reflux.. who knows, but it doesn't need fixing, thank goodness. Her ribs also fan outwards. It was just funny for them to all be like, "hey, look at that, she has a pectus." and the doc was all showing his student. Poor Quinn... a little science lesson. lol! She had fun with it though.

Since I last posted, Q has gotten much better : ) She is on her oxygen all the time still and she has her new seizure medication. Yesterday, she came up to me and she said she was really tired, so she layed down. i started doing my hair. about 20 minutes later, she came up to me and said that she was getting up now because she didn't feel all weird anymore. That was kinda strange for her to say so i tried to get her to elaborate on her "weird" feeling and she said she just feels weird sometimes. I asked her how and she said, "because sometimes I go like this and i go like that and then i fall down." She was referring to the way she was walking... how she moves to the left and the right and ti makes her fall. This was kinda heartbreaking. but also makes me realize that the way she is walking, she just cannot control it. but, today she seemed to be a little better with the walking and hopefully, her "weird" feelings will get better too. I think maybe she might be dizzy?Today was the first morning she woke up without another one of those "episodes (seizures)" and it was also the first day that she wasn't incredibly ataxic. And the first day she wasn't incredibly exhausted and sleepy.. the first day in about two weeks I would imagine. This is excellent, it means that her body is healing from the "hiccup" and I can stop worrying so much.   However, her stomach is being dumb again.. lol go figure... She hasn't pooped again... going on 3 days. so I started the Lactulose again last night... been giving it to her about 3-4 times a day, on top of lots of mirilax, still no poo. and she is all super duper hungry again... acting like I'm starving her. And bloating up a little bit. oi!

Welp, that's the latest.

A small Update

Well, Quinn is MUCH better. Whew! Those seizures were really frickin scary! And how she was acting, it was just really freaking me out! What happened was... After i wrote the last entry, Quinn was still having seizures. I took her to the pediatrician so he could see this....

And this...

And he told me that she is just having a lot of seizures right now and that there isn't much to do about it except wait for it to run its course. He said she was definitely exhibiting ataxia and nystagmus, but her strength wasn't bad at all. She was just a total mess! So we called the neurologist who wanted to try her on this new seizure medication on top of her other two she is already taking to try and control these particular types of seizures. The doc just thougth she was just having more seizures. So we started that medication two nights ago. It was just so crazy. My daughter fell off the toilet and couldn't get back up! seriously! I felt so bad for her.

 So we took her to see the pulmonologist the next day (yesterday). I walked in there fully expecting for him to tell me that we could remove her oxygen. I actually brought records of her stable saturations while she was inpatient and told him that her desats are very few and far between and that they are quickly self-resolved. But we also talked about her seizures that she is having, and he checked her out and felt that she was neurologically unstable right now. She was weak, she slept the ENTIRE TIME! and when she did wake up at the very rend of the appointment finally she was bobbing her head, still happy as a clam but obviously not very steady. He felt that the oxygen might help her with neurological stability and so we are suppose to keep her on it 24/7 again. This kind of threw me for a loop because I thought we would discuss removing her completely. she's had a normal sleep study and very normal saturations in the hospitals. It really sucks how much seizures take out of her!

We also discussed this pulse oximeter issue. he really feels that she should have a pulse ox! Here's the thing. it's totally insurance. This doc has been trying to get her approved for a pulse ox since she got put on her oxygen, a long ass time ago. In order for her to be approved for a pulse ox, she has to have a pulse ox nighttime reading, in order for have a pulse ox nittime reading, she has to have a pulse ox.... catch 22, right? So i have a lot of people working with me on this one now. I think we finally might be able to find a way to get this approved once and for all. The nurse said that if the doctor thinks she needs a pulse ox, she probably really needs one. It's even more concerning that she has a known seizure disorder and she stops breathing during the seizures, she also has central sleep apnea (still diagnosed even though her last sleep study was normal). but what is really scary that the nurse made very clear to me was that with seizures, Quinn could just stop breathing at night and without anything to alarm me if this happens, it would be devastating! And she's totally right. She's working very hard with me to get her a pulse ox. she said that wit hall of quinn's diagnoses and with her being on oxygen, there is seriously no reason why a pulse ox should not be approved. so this is my biggest battle right now.

I was starting to get worried too because she hadn't pooped again since the enima, though it had only been like a day and a half, i still expected for her to have pooped even a little because i was still giving her some laxatives. So Quinn finally pooped yesterday, actually all day yesterday. She was crying so bad about her stomach hurting her and she pooped tons of fluffy diarrhea. so that was quite a relief that she was able to eliminate for herself.

Today she woke up and she is still pretty wobbly and off-balance, but she just seems much better than she was before. this could be her oxygen or her new seizure med or both, i'm gonna go with both. so something is working in her favor, which is just great. Though i think she still might be having some seizure activity, they are just the petite mals that we typically see so i'm not very worried.

She was suppose to see the surgeon today to discuss how they want to go about placing this separate j-tube, and possibly fixing her anatomy. Well, first i got a call this morning that he had some cancellations and so could we come early... SURE! i said. but as we started to head down the hill, i got another call from the nurse saying that the doctor had an emergency surgery and that he would be unable to meet with us. I was SO BUMMED!!!! We have been waiting for a few weeks for this surgery consultation! I've been so anxious about it and it was canceled. I know it was canceled for a good reason, but still. My daughter is not exactly doing the best on the gtube. We know she had great success when the g/j-tube actually was in its proper place and i'd like to see her thriving again. This new low for her is just heartbreaking. I'm so stressed out from her loosing weight and having seizures and knowing that this surgery could potentially help her tremendously... at the same time, i'm stuck dwelling on the fact that this surgery could potentially harm her greatly due to them having to mess around with her small intestines. I can't help but wonder if this increase in seizure activity, this bowel movement problem and even her physical instability could all be in part due to her trying to digest this food that is stuck in her stomach for hours upon hours upon hours.

Quinn is still not in school. the nurse was suppose to call me yesterday, but she never did. I know we are suppose to meet with her on monday and hopefully, that still happens. Quinn should have been in school for 3 weeks now. She SHOULD have been in school when she was healthy! At the beginning of the school year. She SHOULD be learning with all her classmates and making new friends.  But she is not right now. And it's all because of the school nurses not getting in touch with anyone and waiting so long to come and set up this meeting.

I think I am just so frustrated and stressed out. I just want her to be healthy and never to be in pain and never to have another seizure. I just want to fix her so badly. I just want her to go to school without having to push around a huge oxygen tank, to have this tube hanging from her stomach. I want her to run without having to worry about being tethered down and clotheslined from this stupid tube. I want her to be steady enough to run and jump and play without falling. I want her body to let her be the daredevil she is inside. I just want so much for her and as time goes on, i find all this slipping away ever so slowly.

Premature Gray Hairs

Well, today was eventful to say the very least....

Q woke up, we ate some breakfast and did a lot of lounging around the house, decided to start to get ready to go and look at some houses (we are looking for a new home). So i start packing up her oxygen and feeding tube and getting her looking all pretty and she starts acting really loopy and ping ponging off the walls again. This isn't abnormal for her to be all loopy and drunk-looking, but typically it's followed by a day of some kind of activity. This loopiness was pretty extreme, especially for having done nothing the entire morning. So I decided to whip out the video phone and record this. Well, her loopy self got worse even during the video and she wasn't really talking very well, so it really started to worry me.

http://s165.photobucket.com/albums/u65/myQTpie/?action=view&current=blackberry020-1.mp4

I just kinda knew after that something was wrong. And then, she just passed out! like this!

So, i put her on the couch and decided to just take her to our local ER. With her not pooping for an entire week almost, despite giving her all these laxatives, i thought maybe she was repeating what happened to her back in June and thought maybe her body was just not letting her absorb any nutrients... so my thought is she was maybe hypoglycemic or something that might be causing this.

The local ER drew some blood and did some xrays. Doc comes back and says, well, we are going to transfer her to the childrens hospital because of her xray. She was impacted with stool and had some dilated loops <--- not sure what that means though... But her bloodwork was pretty good. She had very stable vitals and everything. so i'm like... ok they will figure it out and hopefully fix her.

So, I meet Q at the children's hospital because she had to ride in the ambulance and the docs give her an enima and she finally poops! Doc says that it's probably a pseudo-like episode and that her xray looks much worse than how she is acting. but, I had her look at the video and was telling her that this was the whole reason i brought her in the first place. Doc says that the video was definitely an example of a "partial complex seizure".... omg! seizures... again... So she consulted with neuro and neuro increased her keppra and we are suppose to make an appointment to see the neurologist this week sometime for long-term care. Quinn is already on Trileptal  and Keppra for seizures. These were increased a lot based on her weight when she was having seizures in January and had to be admitted to the hospital. And she has not gained any weight since then.

I'm a little frustrated with myself because i'm pretty certain that she is probably having a lot more seizures than what i'm aware of. Not to this extreme i don't think, but she does get exhausted a lot and jsut kinda f alls asleep, i jsut thought she was always tired, due to the nature of her likely disease. These are probably more along the lines of seizure activity than anything else. I wish i knew why all this stuff happens to her.

Luckily, we actually escaped admission! Which is utterly amazing to me! But i'm pretty certain that it's because her bloodwork looked really well, her pee has been clear and healthy looking and the enima did the job in making her poop finally. Quinn's motility is really crappy.

So, i'm driving down the road and just thinking about all this stuff happening to her and what happened today and i thought to myself, "I just wish I could wave a magic wand and her head and stomach would be fixed!" and just as i'm thinking this to myself, a shooting star streaks across the sky... So, i wished again :)

Sick House

At least for me! I feel so icky right now! I can't breathe out of my nose, i have a headache, i'm hot. This is NOT very fun. for Quinn, her stomach is being dumb. Started yesterday with her begging me for food even after I just fed her! Sadly, this is the first sign that her tummy is being wonky. She hasn't pooped (that i know of) in 3 days. Last night, I pulled up to my sister's house, parked, turn towards Quinn in the back seat and witnessed yet another seizure. My poor kiddo! I HATE seeing her have seizures. It breaks my heart. You feel so helpless and there isn't anything you can do about it. She hasn't had a seizure since her meds were increased back in Jan/Feb and they were increased by a lot based on her weight. Well, Quinn hasn't gained any weight since then so i highly doubt we can go up on her seizure meds. Might have to try a new one out if anything else. She's also gagging and wretching a lot. This is a new symptom. I know a lot of children who have the same issues as Quinn deal with this all the time daily, but this is a new thing for Quinn to be doing this constantly so I think it's something that needs to be addressed to the doctor soon. Anything sets her off on a gagging/retching fit. She could just cough and suddenly go into a gagging episode for about 10-15 minutes. I'm pretty certain that her fundo is still intact due to the fact that she never throws anything up. so of course this is a good thing. One of the things that scares me the very most is that gagging is what set her off on a huge seizure back in January when she had to be admitted to the hospital for them. So, yeah i get flashbacks when she starts gagging. It's almost like i sit here and wait for her to collapse into my arms and go completely limp.

So this morning she came and woke me up and said to me, "Mommy, i think my stomach hurts." I asked her to point to where she was hurting and she pointed to the middle of her chest and to her left side. I got up, didn't feed her breakfast because she doesn't necessarily need it and i didn't want her to feel even ickier, so i got her a little bit of juice and she drinks it up. 10 minutes later, she is gagging and retching again. She says she thinks there's a frog in her throat <--- LoL! I'm sorry this is just cute how she tried to describe how she was feeling. If this continues throughout the weekend, i'm going to put a call into her GI doctor and find out how he wants to go about treating this. I'm going to go ahead and give her the "as needed" bowel meds and hope this helps her start moving things along. I'm REALLY hoping that she is not having another pseudo episode, but this path seems very similar to what we dealt with in June.

PICTURES!!!

I'm only going to post a few, but as days go by, i'll keep posting. these are mostly from our Washington trip.

Small update: Q is doing well, but she is loosing weight again, slowly. Unfortunately 35ml/hr, even if put at 24 hours a day is not enough calories to support her. So, although she is doing GREAT without so much stuff in her body, she is not getting adequate nutrition. This has left me with a small, decision to make. A) increase her calories by increasing the rate at which I feed her or B) allow this to continue until she gets her jtube surgery. My decision: See what the surgeon says as far a sustaining her until we get this surgery. YEP! we got a date for our surgeon consultation. It's on Thursday of next week (the 9th). We will be discussing options. either for fixing her anatomy, or going through with the j-tube procedure or even both. We will be discussing the pros and cons of both as well as asking lots and lots of questions about her long-term care when it comes to both of these options.

as far as this gagging retching thing. She hasn't been as bad as she was that one day... i'm not sure what caused it, but she is spiking fevers off and on recently, but only up to like 101 or something, nothing major but nothing is sick it seems. I don't think its any kind of infection, though I also don't know what else it could be. We took her to the pediatrician so he could fill out paperwork. any kind of question i have for him regarding her care is basically reverted back to "well, what do her specialists say about it?"... honestly, i can't expect much more out of the pediatrician anyway so we just deal until we have to seriously worry. That is our life. Quinn will let me know when something is seriously not right. we learn to deal with the daily complaints of stomach pains, leg pains, "butt" pains. it is what it is until we know what it is. <--- does that make sense?

She is still not in preschool. We are STILL waiting to hear back from the state nurses so we can have this pre-enrollment meeting so we can get all her paperwork in order so she can join her friends. The yahve been in school for about two weeks now, but she is still unable to attend. *sigh* I hope those lazy nurses can hurry up so my child can learn stuff! and I really hope it's not this way for kindergarten. it's bad enough taht she will need lots of time out for her surgery and we just don't know what the rest of the school year will be like. I'd rather have her in there while she is healthy and capable!

And pictures!!! Enjoy!

my little flower girl!

Me and my little brother... who is now married!!! omg i can't believe it!

Q's Mad Face

Q's Happy Face!

MY NEW ALL-TIME FAVORITE PIC!!!!