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BearHugz

May 2008

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DRUMROLL.....

May 09, 2008 05:16pm (EST)

It's a throat infection. Apparently, her tonsils were swollen and pussing and her throat was really red. so he put her on zythromax.

She was still wheezing, but he said her lungs sound fine. On the other hand, I pulled out the stethoscope last night and her lungs sounded congested to me. He only listened to one lung and she was crying. Is that accurate? He didn't even check her O2 sats. He told me that the throwing up is not good and that she needs to see the GI doctor. He said that since she has asthma, it makes things worse in the chest area and that pretty much any sickness that she has will be in her chest area. her cough sounds terrible and now it's a croupy junky cough. Otherwise, she is still in good spirits. Gotta love that kiddo!

If she is still not breathing well or still has a fever in five days, I am to take her back in.

-Sarah

Posted by BearHugz | Comments: (3) | Permalink

SECOND POST FOR THE DAY (VIEW BELOW)

May 08, 2008 04:52pm (EST)

Quinn just threw up all over my couch. I know she is pretty sick right now, but I mean, she has the fundo. She shouldn't be able to throw up THAT much. EVERYTHING in her stomach just came right out!!!! AAAAAAHHHHHHH!!!!! I'm taking her in to see the doctor tomorrow. She has a pretty high fever now and is sounding super junky. Coughing a lot, but boy, her spirits are still fine! She is not acting too sick. How can a kid, who has a terrible cough, a fever, and is throwing up PAST the fundo feel so good??? It's a mystery I tell ya, a mystery. -Sarah

Posted by BearHugz | Comments: (5) | Permalink

SPOKE TOO SOON

May 08, 2008 03:02pm (EST)

Well, I decided that i am going to take Quinn in to see the doctor tomorrow. She is sweating pretty badly now and her cough sounds horrible! Despite the breathing treatments, she is wheezing and it is much worse at night. She just sounds really junky. I'm sure that everything will be fine since she isn't acting too sick, but she definitely needs to be checked out and possibly put on some antibiotics. The developmental teacher who came out today was telling that i should take her in because her cough sounds pretty bad and it takes her a little while to recuperate after a coughing fit.

She was just sleeping on the couch and I had to give her a breathing treatment in her sleep because she had an apnea and coughing fit and then was working to breathe pretty hard.

Do you think it's weird that she doesn't really have any snot?

I'm gonna go take a nap.

-Sarah

Posted by BearHugz | Comments: (0) | Permalink

FEVER IS GONE :)

May 07, 2008 10:51am (EST)

Hey guys. Quinn's fever is completely broken. she is doing fine and doesn't really appear to be sick anymore. I imagine that her body was fighting off something and her immune system did its job

The only thing that i am noticing is that she has been choking a lot. Been doing a bit of more wheezing and has a croupy cough even with the breathing treatments. she has also been taking these really long pauses of breathing while awake. I'm talking like 10-15 seconds of not breathing and then she will take two rapid breaths and then hold her breath again. It's so weird! She has been grunting when she does this too and clearing her airway. It doesn't seem voluntary at all and she doesn't like it either. I am wondering if this is because she has been refluxing again. YES! the reflux is back and I know this for a fact. The other night, we were laying on the chair watching a movie and she hadn't had anything to eat or drink for almost an hour and I heard it come up, she choked on it, it gurgled in her mouth and then she swallowed it back down and started breathing really hard. GI doc said that he would write her a script for prevacid at our next appointment. Maybe this is why she has been such a fussy butt! any thoughts? -Sarah

Posted by BearHugz | Comments: (2) | Permalink

UH OH, NOW SHE HAS A FEVER

May 05, 2008 01:56pm (EST)

Yesterday, Quinn choked so bad on her 2.5ML of medication that she turned blue. Scared the crap out of me. She has done this before, plenty of times before, but not for a while.

Well, Last night, she was sweating much more than normal. And then today, she developed symptoms of fighting off something: green boogies, sore g-tube site, increased fatigue, increased symptoms of dysphagia (more difficulty swallowing than normal) and the oh so scary, wet cough. Now she has a fever. It is not a high fever by any means, but it is there nonetheless.

Hopefully, whatever she is fighting off is not pneumonia and hopefully it goes away soon. She is still acting really normal. the only signs of illness are the symptoms. She is not lethargic or struggling to breathe so they are good signs because i would think that if she aspirated pretty badly, she would be really sick right now.

Well, out goes the healthy streak. I knew that if I started celebrating, this would happen!! GGGGRRRRRR!!!!

-Sarah

Posted by BearHugz | Comments: (5) | Permalink

DOING GOOD!

May 04, 2008 10:36am (EST)

Every morning when I wake up, i have to open up Quinn's medicine closet, which takes up two cabinets and one drawer of my kitchen space and I get out her gauzes, tape, medicines, syringes, tube feeding supplies and etc... This starts off our day, this is a routine every four hours, this ends our day. it's an aweful lot to keep track of. She has to take so many medications in a day just to stay healthy, so she doesn't have seizures, so she can digest her food, so she can breathe. I know that others have much more, but it's still a lot. It's a total of seven meds.

Quinn is on a continuous feeding of 80ml/hour, which averages out to a little over 2 hours per feeding which gives her maybe a 2 hour break total in the daytime. We are not very close to weaning her from the tube since I really can't find many foods that agree with her tummy. I know that eventually, we will get there, but all the foods that she is allowed to eat, she doesn't like the taste of, so won't eat enough to sustain her own health. i talked to her GI doctor about this and he said that it's likely that she will need the tube just for supplemental nutrition for the rest of her life. It's a scary thought to think of her having that thing in her belly for that long.

I have been thinking about putting in a request for a medical stroller for her feeding pump and fatigue. She cannot walk long distances without fatiguing greatly and needing to be picked up. And the medical stroller has places for her feeding pump to hang on and all of her supplies. I'll wait for a little while longer and see what strollers I can buy that might be good for all of her stuff, but if I can get insurance to pay for it, it would be better for me

Quinn has been doing good the past two days with her tone. She pedaled a tricycle about 5 feet in therapy last week! It was awesome. I almost started to cry. She has been working on it for about 8-9 months. The therapist said that it was a true milestone. she also did the pedalo all by herself. She really lacks reciprocal motion and motor planning skills so it is a great achievement for her to have finally got it. I hope she doesn't loose the skill!!!!

she also appears to be gaining some really good weight. She is talking a lot. She still only puts two words together every once in a while, but that is just fine by me! Besides, I think that's still within normal limits.

She has been spitting up, though, which is very clear indicator that her wrap is loosening up. I hope it doesn't cause problems in the future. Right now it is just spit up. GI will evaluate and probably write a script for prevacid at our appointment on the 5th of June.

I'm so surprised to say that things are still going really well! Quinn has been so healthy for such a long time! She has not been really sick in a while which is GREAT!

She is about 28 months, I think. She is growing so fast. Hard to believe that she is almost two and a half!

-Sarah

Look at the princess!!!!

In Therapy

Posted by BearHugz | Comments: (8) | Permalink

MARCH FOR BABIES AND UPDATES!

Apr 30, 2008 11:16pm (EST)

We had our walk last weekend. It was great. The weather was great, the ceremony was great. I just wish there was more family teams. At least I didn't see many!

We started the walk and about 1 mile into it, a lady came up to me and said, you may think I'm weird but I know you! Are you kidding me??? anybody who knows me by Share is a friend!!! I couldn't believe it! It was Sara's mom from the blog Starring Sara!

Amanda, I'm so sorry, this is going to sound really rude, but I lost your number. PLEASE forgive me! I really want to meet up with you again so if you can email me PLEASE, PLEASE, PLEASE!!!! I'm so, so sorry!!!

miqtpi@yahoo.com

Well, anyways, we chatted a bit about our babies. they played together. My sister made me really mad. My sister was so rude! She said over and over again like a little three year old, can we go yet? can we go yet? can we go yet??? I was getting so frustrated. she wouldn't even do the face painting with her son or allow our family to relax in the shade. Mind you, my sister is 21! She really upset me that day. Next time, she is either not going at all or will drive her own self to the walk. i am not going to deal with that again! I even told her weeks in advance how long we would be there and she was fine with it, but she was agging to get out of there by 10am!!!! It was incredibly frustrating and felt so robbed of my time meeting Sara's mommy.

I'm really looking forward to our future play dates, though. The two are so close in age!

Quinn's sleep study is scheduled for the 27th of May. I have an option to move it closer, but I have finals all the next three weeks and the work load on me is enormous. I can't sneak in a multi-hour sleep study. It will be too hard and stressful for me so I scheduled it a few days after our last day of school.

Insurance is being a b-word!!! Will not approve an apnea monitor for her. (let alone her leg brace, STILL, eight months later! apparently it's still in review.) I called around to a bunch of different places and spent many, many hours on the phone. Basically, to break it all down, an apnea monitor for her is out of the question even with a doctor's script due to insurance issues. I will NEVER forgive our nation's health care system if she dies in her sleep!

Life is busy as always, but Quinn always seems to brighten up my days by putting something in my purse or backpack for me to find later in the day at school. Nice little surprises! She is also engaging in lots of imaginary play and imitation. It's really great to see her blossom. Of course, the terrible two's are absolutely terrible!

Her g-tube is no longer in any pain. As a matter of fact, she has been willfully playing on her tummy, which has NEVER happened. So it is quite a surprise.

Her fatigue is still prominent. Some days it is worse than others. If she doesn't have the brace on, there is bound to be some serious accidents. The other day, she was just walking into walls and cabinets. One time she walked into the corner of the wall, hit her forehead and bounced off of it hitting the back of her head on the corner of the bookshelf. OH BOY!!! She is so accident prone. The good news is that if the sleep study turns out abnormal, we may have found the answer to our problems.

We also are going to see genetics/metabolics next month and then Neuro and GI are on the 5th of June.

Quinn is still strictly g-tube fed. UGH!!! I can't find many foods that will agree with her tummy! We are still dealing with occasional diarrhea even on her VERY LIMITED diet. By limited I mean that her diet only consists of: milk, cheese, eggs (which she won't eat) carrots, cucumber and avacado (which she won't eat either) chex rice cereal, water, a tiny bit of apple juice, blueberries, raspberries and cottage cheese. we are still really iffy on the fruits. I think they may be causing issues for her too. Everytime we intro, she has some loose stools. GGGRRR!!! This is really frustrating me because she does like to eat.

-Sarah

Posted by BearHugz | Comments: (5) | Permalink

FUNDRAISING THIS YEAR

Apr 19, 2008 01:01am (EST)

wow! this year is going so much better than last year. I think last year it was just all about showing my family what it was all about. We didn't raise much. I knew that i wouldn't have much time to plan and organize many events this year. But my mom on the other hand, she has always been great about doing all of that. she has mainly been organizing it all. A couple of weekends ago, we had a yard sale. We made a little over 100 dollars. then we went to the swap meet the next week for two days. We sold a little more. We have also been selling the Toyota Raffle tickets at my mom's work.

My mom organized a benefit dinner for the march of dimes. It was today. I didn't have much to do with it other than to write a speech, make a few poster boards and help set up the place. We had volunteers who DJ'd, cooked and waited on people. I communicated with the local chapter who sent us some banners and ideas on how to decorate. We had Pull Pork Sandwiches with potato, macaroni, and regular salad. Some watermellon and baked beans. We charged $7 a plate and each of them got a ticket for the drawing for the gift basket at the end of the night. The gift basket consisted of some various items, march of dimes liscense plate and six tickets for the Toyota drawing. People were allowed to purchase extra tickets for $1 each. Plus, we were selling the toyota tickets by themselves and selling some other march of dimes stuff that I ordered from online. We gave away free awareness bands for anybody who bought a meal.

We set up a table that had a poster board with pictures and some of Quinn's story. I also printed a pretty detailed story of hers for anybody to read if they wanted to and stapled it together and put it on the table. Then I made another poster board about the March of Dimes and the beginning of the March of Dimes.

Some ladies also donated home made cakes and people were to pay a dollar for a slice. ALL proceeds made went to the march of dimes, including the tips from the waiters (of course, that was up to them).

I was really nervous about telling my speech and I did ok until I had to talk about the time when Quinn was three weeks old and went blue and we had to call 911. I don't know why that part is so hard for me to tell, but it is. It was so very traumatic and telling it is like reliving it. I just remember the fear in all of us when this happened. I literally couldn't go on and my mom had to read the rest of that part. I wrote that whole part down because I knew that i would have an issue and was prepared if that happened and it did. Thank goodness for my family. My mom helped me with the speech and spoke about what she felt as a grandmother to Quinn. I was able to finish the rest of the speech. Everybody was listening. I wish I could have showed her video, but we couldn't get the equipment to work right. It was really frustrating because it is a really powerful video.

We also had another speaker who spoke of his friend who was crippled by Polio. Then we had the drawing for the gift basket.

It was a REALLY good night. Better than expected for our first time putting on something like this. We almost had the news there too, but he only found out about the banquet at such short notice. We sold over fifty plates and raised almost $900 dollars at this event ALONE!!! And that is not even counting the Toyota raffle tickets, which probably raked in another $200. I seriously think we almost reached our goal of $1500!!!!

The ladies of the Moose also presented me a check of $100 to go towards the March of Dimes. The night was AMAZING!!!

I was on the verge of tears the entire time. People were coming up to me and asking about Quinn and telling me that she is amazing and that our story is amazing and how wonderful of a job that I am doing and I just wanted to cry. I don't know why I wanted to cry.

It went so well that we decided to make this an annual event. My mom is also going to do these things many times through the year. WE are going to do some poker tournaments too. All the volunteers volunteered their time again. The cook was great and has won awards for cooking. He was really excited to do this again. We also had a karaokee gal out who volunteered her time as well. It was amazing!!! My mom is GREAT!!!!

Unfortunately, the walk is next weekend and we STILL don't have our team shirts.

I have to go... the night was great. I'm just grateful to have my family who supports this, who helps with this, who supports me and who totally gets why it is so important to me.

Here is Quinn and her Paw Paw (My dad)

Here is me doing my speech. My posture is so bad!

Quinn thought it would be great to put as many child awareness bands on her arm as she could fit. She was pretty proud of herself!

Posted by BearHugz | Comments: (8) | Permalink

NOPE, DEFINITELY NEVER A DULL MOMENT

Apr 13, 2008 12:49am (EST)

Normally, Quinn sleeps in her own room. she has since she was VERY young, so I don't ever really listen to her sleep. Well, she had sleep apnea as a baby, was discharged off the apnea monitor, mostly I think due to our changes of residence from state to state. Anyways, she had a repeat sleep study when she was 13 months old. I always talk about how i never really believed that test was accurate given the fact that she really didn't even sleep! I know, because I was there!!!! Well, the thought that she may still have issues sleeping has never been far from my thoughts.

I always go into her room and check on her and she is usually snoring and breathing loudly. She has been diagnosed with reactive airway disease too and takes her breathing treatments. Well, last night, she fell asleep on the recliner chair out in the living room and I was sitting on the couch. I was listening to her breathe and sometimes she would pause in her breathing and then carry on. But a few times, she literally stopped breathing and gasped loudly followed by coughing fits. Now i don't know about you, but in my book, that is not ok especially considering the past that she has had with sleep apnea, blue spells and her almost coming home on oxygen from the NICU. At night, she normally coughs... I can hear her from my room. I think I am going to request an apnea monitor. Given her history, I don't think I will have to fight much for one.

She has been hospitalized countless times. At night, her normal saturations are between 94-96% with a few dips here and there. the nurses all say that that is normal. but the gasping for air, I do not think that is normal and it was actually pretty scary.

Also, neuro called the other day and Quinn is going to be getting some DNA blood work up on Mitochondia Myopathy Complexes I and II. We discussed her fatigue. I forgot if I mentioned this, but I switched her therapy on tuesdays from morning to afternoon because the lady didn't believe me about how much she fatigues by the end of the day and she was saying that Quinn needs to have her blood sugars checked. Especially because of how much she sleeps and that her sleeping hours have been increasing. She now sleeps about 12-15 hours at night and takes a 3-4 hour nap on average. I personally think it has nothing to do with her blood sugars. I just think she has that mitochondria myopathy and that is the reason why.

Also, I did my speech about Quinn in my speech class and should have just hid in a corner. I showed her video too. Everyone said I did ok and apparently, I made a lot of people cry, but I couldn't even tell her story. I just about started bawling, I left out a lot of important stuff because i just couldn't carry on. My chin was literally quivering trying to hold back tears. It was absolutely terrible!!! I'm ok about speaking in front of a group, but telling quinn's story, that was unbearable and I have to do it again next week at our benefit dinner. That was the whole reason I chose to do this speech for class anyways. My mom said that if I break down, so long as I have it written down, she will finish the speech for me. But I just couldn't believe how hard it was to do! I imagine that I will get better as time goes on.

And Quinn is Quinn! Happy as ever and still amazing everyone with her preserverance.

PS. My parents dropped off some orphaned puppies at my home. They were abandoned and are SUPER DUPER CUTE!!!! They were so skinny when I got them. I could see their ribs, backbone and hip bones. I've had them for four days and they are already fattening up. I can still see their bones, but not so bad. Im trying to find a good home for them. I can't keep them. I don't have enough time for them and I am HIGHLY allergic. But they are cute and I just wish I could keep them. Here are some pictures. Quinn wakes up in the morning and says "puppies"... so cute!!!

Posted by BearHugz | Comments: (4) | Permalink

WHEN WILL IT END?

Apr 04, 2008 01:39pm (EST)

there really is never a dull day with Quinn.

On April fool's, we went to Loma Linda to go and get Quinn's mic-key button looked at since it has been so painful for her. He talked to me some and changed her button to an AMT mini non-balloon button. We went home and my sister and i decided to go to the mall so we left and i hooked Q up to her tube feedings and when I was taking Q out of her carseat, her tube was wrapped around the strap. I swung her around my hip and then we hear this loud pop and Quinn starts screaming. I ripped out her g-tube! I looked down and there was blood and formula gushing out of the hole in her belly. So we put her right back in the car and started driving to the nearest hospital, but traffic was so bad and so we had to call 911!

The ER doctor left her with nothing in her hole for over two hours and her hole started closing up. By the time I finally got down to loma Linda, her hole was already almost shut and I demanded to speak with a doctor before they stuck anything in it. I was telling her my concerns with having the g-tube, the problems we have had with it and that she has been gaining weight so maybe we can start weaning her. about why we got it put in, about our fears with putting it back in and about how i am willing to deal with the NG for a while and if she still needs the g-tube, then we can put it in later. About how she has been eating a little better and about how she may not be eating well due to pain anyways... I just let her have it with all of my concerns about the g-tube. She puts Quinn on the scale and she did not gain ANY weight AT ALL and actually lost a couple of ounces since January (the last time she was inpatient). Then she tells me that given her history and the ease of her getting malnourished and dehydrated, the fact that her diarrhea is still not under control and that she has a metabolic condition and even some undiagnosed conditions, she would strongly recommend that the g-tube be kept in. She felt that if we put the NG tube in and try to wean her in these circumstances, it would be a regretful decision and that we would likely be back in the hospital again with dehydration/malnutrition and she would need to have another surgery to put the g-tube back in, which would mean another hole in her tummy and another chance for her to be in respiratory distress. She told me that she does not believe at all that the GI doctor will agree with taking the g-tube out. (and he didn't) She also told me that they don't recommend taking a g-tube out unless the child has not needed it for 1 year and has shown good and consistent weight gain, better health and steady growth. We had to spend the night there because the GI doctor had to be the one to put the button in. It was terrible. She was in so much pain. I felt aweful becuase none of that would have ever happened if I wasn't so careless. I feel better now because I know it was just an accident, but i still feel terrible!

We are on an infection watch since there is now an open wound and formula was seeping out. She did have a small fever yesterday, then when I checked it before bed, it was about 95.9 rectally. Then this morning it was normal. She is a little wheezy, but it's not in her lungs, just her airways. She takes zopeonex and pulmicort anyways and she is better after those treatments.

the button has worked out great. Amazing that after it was yanked out of her, dilated and tortured, she is having less pain with it than she was with the other button. It is smaller too. She likes it much better.

She is also NPO right now. We are trying to give her digestive system a break and then re-introduce foods to see exactly what she is having trouble with. The GI doctor thinks she may have other food intolerances. plus, there is a wide range of what a CSID kid can tolerate food-wise. Some kids can't even have artificial or fruit sugars. some can't have starch either. She is supposed to be NPO for about a month. But I'm having a hard time with breakfast time so I am just giving a tiny bit of dairy. It's not very much at all.

She is doing well.

-Sarah

Posted by BearHugz | Comments: (6) | Permalink

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