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BearHugz

May 2013

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PULMONARY APPOINTMENT

Mar 08, 2010 10:27pm (EST)

Welp, Quinn had a visit with the pulmonary doctor today. we haven't seen him since September, so we had a lot to catch up on. Quinn is really not the same as she was before, she is paler, her tone is lower and she seems much more exhausted. this was noted by him so we all know that this issue is definitely an issue, unfortunately.

Quinn's oxygen sats were great! she was 99% on 3/4 liter of oxygen. I showed him Quinn's journal that I've been writing to keep track of all her oxygen saturations and he seemed to be really pleased. With my terrible memory, the reference is definitely an excellent thing. I recommend keeping a daily journal for all kids with special needs because every day is a different day and there's so much to try and remember.

So, if you read back through my entries since January, you will see all that I had to catch him up on and the end result is...

Quinn is to remain on her oxygen, 24/7 and to increase it from 1/2 a liter to keep her saturations above 92%. We are also switching oxygen companies because we are getting Quinn a continuous nighttime pulse ox!!! Not the dumb spot checker! so taht way we can monitor her at night!!! woo hoo!!! it's been years and this is what i've been fighting for! But now she should qualify for it!

I asked him what his take is on her issues with the oxygen saturations. And he said that from a lung standpoint, she is good. He doesn't think there is any anatomical reasons for why she looses oxygen saturations, however with her having a possible mitochondrial/neurodegenerative disease, that would definitely give reason as to why she is not able to keep her sats up. He believes that the energy thing probably contributes to it and that she is just unable to take in enough air when she breathes. So, because Quinn does not do well when her sats are low such as : Seizures, illness and fatigue, which contributes to her overall health, he feels that keeping her on the oxygen 24/7 is without doubt the best thing for her right now. We will discuss in 6 months if she can be weaned or if she does have MNGIE, what the best treatment option is from here on out as far as that goes. But for right now, she is doing well with what we are doing... well... as well as can be expected. I mean for goodness sake, we have a hospital at home, practically.

I love her eyes.

006

Posted by BearHugz | Comments: (2) | Permalink

QUINN'S GI APPOINTMENT.

Mar 05, 2010 02:19am (EST)

Well, i'll have to tell you about the zoo later because I still don't have the pics.

Quinn had an appointment with her GI doctor today to talk about her stomach problems. All in all, it was a good appointment, but i'm frustrated because there really is nothing much else to do for her at this point. Our goal is to keep quinn's stomach working for as long as we can get it to work. And for right now, this means that she is on strictly tube feedings and nothing by mouth. Quinn is still an aspiration risk too due to her pneumonia from january and also because of her increasingly difficult time swallowing. (before, she only had to tilt her head back with solids, now it's liquids. she puts her nose in the air just to swallow and it truly does look difficult for her.)

My mom was with me, thank goodness! it's so frickin hard to take Quinn and all her bags and connections with me

but also it makes a difference to have someone else there to basically back me up. I showed him her journal that i have been keeping of her days when she is having issues. And we showed him the pictures of her stomach and he took a look at those and said that it is definitely a distended stomach. But since she is gaining weight, thankfully it's not a malabsorption issue, it's strictly Delayed Gastric Emptying, so bascially, food is having a very difficult time moving into her intestines. In a normal person, food can sit in our stomach for hours and then move into the intestines, in Quinn, he suspects that it is sitting there for days. He explained how he is having a very hard time finding a pharmacy to supply Erithromycin and that's why we haven't gotten our script yet, but the hospital (which is over an hour away) does supply it, so we are going to have to go there. I really don't care at this point. I just want something that is going to help her. We did also talk about a gj-tube. He said that if the erithromycin fails, she will likely need a gj-tube.

And then, me and my mommy self wanted answers. Why is she like this? how come she was able to digest foods last year and this year, she can't? Why is she having seizures? why does she need the oxygen now? And he told me that there is definitely something neuro-degenerative going on with Quinn. Unfortunately, we don't have her diagnosis yet, but Hopefully we will with the testing for MNGIE. He also told me that we might do a liver and/or muscle biopsy to try and diagnose her. He feels strongly now that we are dealing with MITO as her new compilation of issues is very consistent with that diagnosis. (THANK YOU! I'VE BEEN SCREAMING IT FOR YEARS!!!) For right now, we can't do much other than to wait on the testing. He wants her in speech therapy for her swallow function and he ordered a Modified Barium Swallow Study over a month ago for her, but again, we are hitting a road block with insurance. He told me that he has worked in 3 different states, one being new york and he said that this state's insurance is the WORST.

I like him, he's very personable and he genuinely cares for Quinn. He said that me keeping a journal like i'm doing is absolutely the best thing to do and to continue to do it. I also have been keeping pictures of everything! everything weird! lol! And video of weird things too if i can.

The next couple weeks are going to be jam packed still! Quinn's Pulmonary appointment is on Monday, then she has her Eye doctor appointment on Thursday, then on Tuesday the following week, Quinn has an appointment with Neuro (yes, it was moved up) I'm hoping to get neuro to try and get us a medical stroller for days like the Zoo!

Here's a couple pics i showed to the doc today.

and this is my sweet girl today! I love her!

Posted by BearHugz | Comments: (3) | Permalink

EXHAUSTED!

Mar 03, 2010 09:10am (EST)

Today, I woke up at 6am, packed up the car and was out the door by 7am, picked up my friend and her kiddo and headed out to San Diego. We got to the Children's Hospital at 11am, got quinn's Blood drawn at 1130am and arrived at the San Diego Zoo at 1215pm. AND the labtech who saw us two weeks ago told me that Quinn doesn't look well. We finally made it home by 1045pm. I'll talk more about the zoo next post since i'll be posting some pics, i just need to get a few things off my chest!!!

It's one of the most difficult things to take a toddler on oxygen, a feeding tube and who is very unstable on her feet to the zoo without a medical stroller!!! I seriously just wanted to shoot myself in the head. The comparison between the two girls was so vivid. Brooke is a month younger than Quinn. She is bigger, stronger and definitely more lively. It's not that Quinn is just a quiet girl, Quinn really isn't looking well. She is weaker than she was last year, quieter and definitely lethargic. My friend commented on how heartbreaking it is to see Quinn go from how she was last year to this. She said that even her eyes are tired. You can see that she isn't well from her eyes. it's not that Quinn is infection sick, she is just getting worse from her old baseline. I basically got even more confirmation today that I'm not insane because I let Quinn eat just a little bit of french fries because i felt terrible eating in front of her and Well, she got to see the stomach problems immediately and basically all day today.

I find myself snapping at people I don't usually snap at and being selfish when i typically am not a selfish person. i just don't feel like helping people anymore. i'm not saying that today i was like that. I'm just so frustrated with life right now i wish I could quit. But I can't. Life goes on.

Last week, the lady who works at the front desk in Quinn's preschool commented on how Quinn was lookin better (this was 2 days of continuous feeds and nothing by mouth). She then said that when i first brought Quinn back to school (about two weeks prior to this day), she went home that day and talked to her husband about her and cried and cried for her. I asked her why and she said because Quinn just looked so terrible and so sick. She made ME tear up! right in the middle of preschool.This is her new baseline. She is not as talkative, and when she is, she has a very difficult time forming her words and sentences. She is much clumsier, her right leg drag is more evident, she slouches more... She definitely does better on just tube feedings. No doubt about it. But this change is truly heartbreaking for me, teachers at school, friends and family. There is comfort in knowing that I am not alone in this, but there is pain in knowing how real this really is.

And if the answers don't come from this blood test, what am I going to do? Who am I suppose to turn to? I can't just sit around and watch her fall apart on me!

Thursday, we have an appointment with the GI doctor. I really hope that he can give us a plan for Quinn's tummy troubles. Andi hope that it is something that allows her to eat without the devastating effects it has on her body.

I'm having a very difficult time getting insurance to approve anything! And I don't know why. Well, i kinda do ,but i think ti's dumb. Quinn is on a special secondary insurance for special needs children, but Quinn's pedi office is not a CCS-approved office, so they cannot order things like physical therapy, speech therapy or anything like that to help her. So basically her help is delayed because we have to wait for her neurologist to order this kind of stuff, but the problem with that is that her appt isnt until April and even then, they usually don't know what to do. I end up having to coordinate all this care and Ifeel like i'm just being a nag. i'm tired of doing this crap. This is someone else's job!!! if you find that a child is in need of intervention, I shouldn't have to work this hard to get my child into services. It should be easier since she has qualifying diagnoses for therapies and she is already in the Inlan REgional program! but it's not!!! someone is making me do their job and I need to figure out who it is because i keep hitting dead ends! I don't know if it's her docs who don't know who to talk to or what to write up or if it's the stupid people in the offices who are in charge of referrals or what but Quinn needs therapy! After seeing the differences in the children today, i have no doubt in my mind that Quinn is delayed and needs some help. Even her doc was telling me that she doesn't want to delay Quinn's medical care, but she just doesn't know what to do from here and she keeps hitting dead ends with insurance protocols and stuff like that. It's aggravating!!!

I just wish it didn't make me so sad so see her so fragile and weak and having a child her age to compare her to was really difficult.

Posted by BearHugz | Comments: (3) | Permalink

LOL, UP TOO LATE.

Feb 23, 2010 10:22am (EST)

I have been having this recurring dream for at least a couple years now...

Quinn is usually the age that she is currently in my dream...

She is sick and she is home on life-saving medications and machines and equipment and she gets a very acute illness and ends up dying in my arms with my family. We check her pulse and her breathing, and she is obviously dead. Paramedics come to the scene and they announce that she is dead and say that they are sorry and leave us to grieve her. My entire family is there and tears are filling up the room.

Days pass and I'm in a constant darkness. Then it comes the day of the funeral and my mom says that they are on their way and that she hopes to see me there. I stumble out of my house, which is on a usually busy street, but this day, it is dead as a doornail. (I don't live on a busy street, this is just the dream) There are these loud auditorium-like speakers and former president George Bush is announcing the Super-Bowl and the highlights of it. I'm walking down the dead street listening to this guy and wasn't crying, i was just sad.

when I finally get to the funeral, it was outdoors and Quinn was much further away from everyone else and she was laying very peacefully on big circle basket with a huge fluffy, super soft mattress in a blanket of roses. Everything was very light pink and white. and she was laying there on her side with her little arms tucked underneath her cheek and chin, just like how she always sleeps. I lay there with her and start crying uncontrollably and ask God how he could take her away from me. I wanted her back and I wanted her to live her life with me and never to go away. As I was crying, i was laying on her chest and suddenly, I felt Quinn breathing! I started freaking out and yelling to everyone that she was alive and everyone was telling me that I was just grieving until she started coughing. We rushed her to the ER and I was holding her wrapped in her blanket of roses and I handed her to the ER doctor and told them that she was alive! The doctor was hysterical and was yelling why i hadn't brought her in sooner and that she was near death. I yelled back and told her that she was already dead, but she didn't believe me and she was asking me why i hadn't brought her in and I yelled really loud "SHE'S TERMINALLY ILL!"

This is the part when I usually wake up. It's a recurring dream. I'm not sure what it means, but everytime I think about it, it brings me to tears. I can't tell my parents about it without leaving out details of the dream because I'll just start crying.

Quinn's tummy has been doing so well on her little amount, but i'm afraid she is loosing weight. She started yesterday with diarrhea, it let up today and she is feeling really well. I want to start her back on oral feeds to see if maybe it was just her tummy that needed a break and see how she does. My mom thinks we should wait. We still haven't gotten her erithromycin in, but I decided as a mom to kick up her Reglan to 3 ml 4 times a day. I read that it should be safe and i'm tired of getting permission from docs to do something dumb like that. As days continue, Quinn seems to gradually get weaker and weaker. Climbing in and out o fthe car is such a chore, not just for her but for me! I have a little tiny two door and before Quinn could climb into the car and get into her carseat, not without a little difficulty, but she could at least do it. Now, she needs a LOT of help doing it and it requires me climbing into the back of my tiny two door car to help pick her up and put her into her seat. OMG! my back is starting to kill me! Somtimes, she can do it ok, but even then, I still have to get her all situated with her feeding tube and oxygen. ti's just a hassle. so i have been looking into getting a bigger four door car or crossover vehicle or something. Any suggestions? Tight budget, yes but not too tight, i want at least over a 2002.

bad news: The children's hospital called and told me that Quinn's blood had been sent out for the wrong order!!! Luckily they caught it, but still, it SHOULD have been avoided. When the doctor handed me the orders, he looked me in the eye and told me that this is a test that they only order MAYBE once a year, so make sure to ask the techs if they know what to do. Which is EXACTLY what I did! Quinn got called in there, i talked to two people and asked if they knew what labs were being drawn, how to handle the blood and where it was going and they said yes, no problem. GGGGRRRR!!!! so We have to make the 3-4 hour drive back to this children's hospital to get Quinn poked AGAIN! The good thing is that they offered us complimentary San Diego Zoo pass tickets!!! woootttt!!! so we are going to spend all day Tuesday next week at the zoo.

Watching TV

Posted by BearHugz | Comments: (4) | Permalink

QUINN'S POOR STOMACH

Feb 19, 2010 05:49am (EST)

OMG. so many emotions I have been through and through these past two days! I have to focus on the positive, not the negative. The positive thing is that there is still a slight chance that Quinn might not have MNGIE. After doing some reading, it all just depends on what her lab results come back looking like. So the next two months are going to be AGONIZING as the past two days already have been. If they come back in the abnormal range, i will be faced with the reality of our situation. If they come back normal, we will be stuck where we were before as quinn still doesn't appear to be getting any better.

Her gut motility is horrendous right now. I had her on a continuous feeding of only 35ml/hr, which if you don't know is VERY slow for a four year old, she will not sustain nutrition, hydration or growth on a rate that low. I figured that if I could give her little tiny meals throughout the day, then it might make up for the hydration/caloric needs. Well, she still bloated up like a 9 month pregnant toddler. And then was hiccuping and complaining of belly pains again. I also think that she is starting to reflux as she is coughing a lot and doing some extra swallowing, particularly at night. But, I won't confirm that just yet. Seriously... this is frustrating.

Still waiting on her erythromycin to come through pharmacy, but I also heard that it can be contraindicated in Mito patients. I told the GI doc this and he said he still wants to go ahead and try it out anyway. He also mentioned going to a GJ tube to help her bloat. I'm starting to think that maybe her "new" GI doc is awesome since he actually calls me back and seems to care and is doing what he can to help, from what i can tell anyway. We are suppose to see him in a month.

This is a picture of us from our hawaii trip last summer

Posted by BearHugz | Comments: (4) | Permalink

THE ANSWERS! MNGIE, A RARE FORM OF MITO

Feb 17, 2010 08:19am (EST)

today while heading to our metabolic dr. We got a call back (finally) from quinn's gi doctor about quinn's motility issues. He wants us to try a new drug, erythromiacin for motility since he doesn't like to increase the reglan. So we r going to try that. He said I should see improvement within days. He told me that her motility is definitely terrible and that we will discuss other options if we don't see good improvement on the new med. I asked him if we could at least at our next appt and address WHY her gut is such a wreck and he told me that he had been discussing quinn w a few other ppl and that he feels a liver or muscle biopsy would b our next step. He said that he feels that we r indeed dealing with a mitochondrial disorde of some sort. So... Fastorward to todays' appt with the metabolic doc....

I fully expected to walk in there with my boxing gloves on and still expected for it to go just as always, completely blown off. A little history: quinn had some blood drawn for mito almost a year ago. Her results came in in july 09! I just now heard the results today. The doc told me that we may know what's going on with quinn that would explain every symptom she has had her entire life! He said that quinn's blood test came back with a partial deletion, suggesting that she has a form of mito called MNGIE...He ordered some more blood work to support the diagnosis but he seemed pretty confident that we found the answer! I can't tell u guys how I'm feeling right now. Now that I'm no longer insane, I'm terrified for her future. I knew all along that something was wrong and now there's no questioning... I was right. I seriously feel like shoving her test results up the butt of every doctor who told me that my child was too healthy to have this... I feel so angry that she had to get worse to be taken more seriously and I'm so absolutley thankful for the metabolic dr, who also felt that my child was too healhty, for him to have at least checked up and ordered this test just to make me feel better.

The doctor did tell me that quinns deletion is very rare and hardly ever seen on a bloodtest!!!

So, no wonder why the doctor was so elated to be giving me the results of the test. It's incredibly rare. What are the chances that not only do i think my daughter had a rare disease called mito, but that she would have the rarest form of it! Interestingly enough, at least by my reading, the mtDNA (mitochondrial dna) is only directly affected by the gene TYMP,which she has a partial deletion of. So basically, TYMP is responsible for making the enzyme thymadine phosphorylase, her deletion creates a shortage of this enzyme and allows thymidine to build up, which results in damage to the mitochondria.

What are the chances that I had a mutated copy and I met someone else who had a mutated copy and we had a baby. and that baby ended up with this disease? It's not fair.

the results to the test are really hard to interpret. But it says results are "A heterozygous unclassified missense variant c.1393G>A 9p.A465T), was detected."

and a bunch of other mumbo jumbo.

Quinn had her blood taken today to test "thymidine determination Deoxynucleosides, MNGIE disease biochemical analysis" AND "oligonucleotide array CGH analysis"

These are to support the MNGIE diagnosis. I asked the doctor what if these tests come back negative and he looked at me like it's pretty much impossible. He didn't even have an answer.

But, Quinn's recent issues with her gut... completely supports this diagnosis. as well as with her seizures. He also told me that the MRI that the neuro said was normal, the one that showed an increase in white matter, was a HUGE characteristic of this disease and basically everything else. I can't find anyone online who have been diagnosed with this disease.

I don't know what to do now other than call all her doctors and tell them what happened and go from there

I feel like i'm in a nightmare right now.

Posted by BearHugz | Comments: (5) | Permalink

UNLIMITED

Feb 15, 2010 01:53am (EST)

I'm amazed at how well Quinn adapts to all the changes of her everyday life. She amazes me all day, every day and it seems like every day is another hurdle thrown her way. Whether it's a cough that drops her sats to the low 80s or a day that her legs just will not work right or a day full of stomach pains and diarrhea. Whatever the challenge of that day, Quinn overcomes it and she makes the very best out of her limitations.

Lately, i've been realizing how easy last year was for us. Last year, Quinn was off her continuous feeds, she was only on oxygen at night and we weren't too worried about her unsteady gait. i don't recall any hospitalizations and things were really looking good for her future. But as last year started to come to an end, We started to watch this ugly unknown illness starting to rear its ugly head again and I knew, i just knew that things weren't going to be as easy as we had become accustomed to. New medications and increases crept into her daily regimen and old worries and symptoms started to possess the same, uneasy feeling. And then WHAM! Just when you think that maybe, just maybe you're crazy again, your suspicions are confirmed and we found ourselves back in the hospital battling old and new issues. Quinn hasn't been the same since she got sick in January.

But, like with anything life has thrown her way, Quinn is beating whatever is torturing her body. She is not bitter. She is not sad. She does not suffer in vein. Instead, she loves life and she remains innocent and curious. She never gives up. She is my strength and she keeps me strong enough to keep fighting for her.

Posted by BearHugz | Comments: (4) | Permalink

FORGIVE ME IN ADVANCE.

Feb 12, 2010 06:19am (EST)

I was watching this show that followed two sets of preemies and it just made me mad! I dunno why but i was so angry while i was watching it and it was giving me ill thoughts about Quinn's medical care at this moment.

These multiples were so frickin healthy at four years old, it just sickened me. children, who were born so fragile, so in danger for their lives could grow up so healthy and hardly even scathed from their prematurity. And my child, my child who was not even a preemie, who was born presumably healthy, the one whom doctors insisted would grow out of all her problems, who keep insisting that she's as healthy as they come were and are clueless to this insane rollercoaster ride. They say that the ride in the NICU is a roller coaster... for us, it was just the line. It was so smooth sailing in the NICU and I was so hopeful that we would figure out what was making my daughter turn blue and we would go home and live happy. but it was just the beginning!

These past few months have been a struggle to figure out what exactly is causing all her problems. Actually, the past four years have been like that! but the past few months, it has been so obvious that my child is not getting better! And I hate it. I tell these doctors that there's something more going on and all they will do is treat what is in their field and nothing more! Nothing more... but there IS more. there's a whole big picture here. My child was born healthy. and now she has oxygen 24/7, a feeding tube, seizures, 9 medications... constant chronic problems with her gut... but... she's healthy? How can that be? How can their judgments be so clouded?

My daughter's stomach is a wreck right now, but i can't get true a reason for this. Her teachers at school have been asking me what's been going on with Quinn? What are the doctors trying to do for her and i tell them nothing. Absolutely nothing. they can't even tell me what they have her diagnosed with.

Today, i picked Quinn up from school. Teacher asked me what was up with her stomach. When i told them that I don't know but it's not cause for concern, they said that if it was their child, they would be alarmed. I am too, but the issue continues to be dismissed. The teacher also told me that Quinn seems so tired compared to what she was a few months ago. they told me that she was doing really well a few months ago and now she doesn't seem to be doing that great and her eyes are droopy. I tried to tell her GI doc this as i think a lot of it has to do with her GI system right now since the bloat is terrible! But, again, i'm dismissed and the mirilax will work for her eventually. WHY am i giving my child mirilax when she doens't have a problem pooping? i don't f'ing know! apparently, she can't poop but that's not true. she poops every day. I am pretty sure this issue is strictly motility. I really don't know, honestly as i can't figure out how she can be diagnosed with constipation and poop every day yet have a terribly bloated stomach when she eats and hours after she eats. I seriously don't know anymore, but i'm pretty certain that their theory is wrong.

I'm just venting. I think maybe docs are waiting until this gets worse as this isn't necessarily an emergency since she is eventually digesting her food, but i dunno. i'm sad that she looks terrible. i'm upset that i can't get a good treatment plan for this and frustrated that we have been dealing with similar issues for the past four years and are no where closer to an answer than we were back then.

I'm just upset. I'm very tempted to get a second opinion, but i think i'm going to just wait until we see the mito specialist and go from there and watch her continue to deteriorate.

-Sarah

Posted by BearHugz | Comments: (2) | Permalink

OH QUINN...

Feb 11, 2010 02:53am (EST)

We are going to see the pediatrician tomorrow morning because something is just not right with her stomach. Her cough does not seem to be getting better either, probably worse. I tried to give her some meds through her g-tube mixed with 40cc of water and it just leaked out her g-tube again. I KNOW stuff is moving through though because her stomach gets a little soft after about 3 horus, but once I flush it with some 60 cc of water or so, it gets hard again. It's CONSTANTLY distended and she is NOT very hungry at all. Not only that, but she has been in the house for 3 days straight... not normal for her... but the thing is she doesn't even want to go outside... SO NO NOT NORMAL FOR HER!... I came home from school today and asked her if she wanted to go to store with me... typically, she would jump right on that notion, but she does not want to go. Nor does she want to play at the park! So... yeah that's really weird.

She is not in any pain at all, which surprises me becuase normally she would be in pain with a stomach this distended. It's a good thing, i think. And probably the only thing that is keeping me from taking her in to the ER at this point. She's on prednisone and breathing treatments and I can't tell if THOSE are what's keeping her heart rate at a super high level or if it's her body working really hard at something else. No way to tell unless i take her off those meds, but i'm not going to do that because she will start her wheeze up again.

Another thing my mom and I were discussing today is her tears. We kinda just realized this. Last week, Quinn got her blood drawn up and the lab techs said that she didn't have tears and they said that she was probably dehydrated. Well, been doing a lot of thinking about this and... she has NEVER had tears. My mom and I were brainstorming and then we asked the family and none of us have ever noticed Quinn to have any tears coming out of her eyes... EVER... it's that weird? A few people have mentioned autonomic or autoimmune response. I dunno really... I'm going to mention it at our next appointment though so i'll bring it up to the pedi tomorrow for sure.

For ME!! What? ME? Yes, you heard right... ME! I'm going to talk about me for a second.. lol! I'm in school and normally math is a VERY DIFFICULT concept for me to grasp. But this semester... I'm not haivng any problems with it at all! it's AMAZING!!! I mean, i even told the teacher how to do a problem on the board and switch an equation to avoid a fraction, and he said that i was smart and thought ahead! no one has ever told me that i was smart in math. this is awesome!!! I even got an 80% on my first math test!!! I feel like a smartie!!! Who invaded my brain and gave me the gift of numbers!!!???

Posted by BearHugz | Comments: (4) | Permalink

CROUP AND MOM PROBLEMS

Feb 09, 2010 08:28pm (EST)

Well, Quinn has croup/RAD flare up. She's been wheezy and super coughy. nights are worse, of course ti's hard to sleep without being able to monitor her breathing. She is also on prednisone to help her get over this hump. i think she is finally on the mend as today, her cough is just wet and not barky and she was able to run around without being wheezy.

She's been having pee accidents recently unfortunately

She also is not tolerating her nighttime continuous feeds! it's at 60cc/hr rate and she usually tolerates it well. But last night she woke up crying. her tummy was very distended and there was formula leaking from around the g-tube site. So i cut off her feeds and this morning she woke up... not hungry at all.

She has been having tummy troubles and it's frustrating. And she's not drinking much at all. She's acting very normal though, actually her tone is the best i've seen in a while. She was able to stand up without usingh er hands from the floor. Anyway. i hope everyone is doing well.

Posted by BearHugz | Comments: (4) | Permalink

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