Thursday, January 29, 2009

Update

So far, we are good. Quinn did not get hives, a rash, a tummy ache, throw up or go in to shock! YIPPY! We are so happy that she has been able to handle her first dose of the Benadryl (this one made her woozy and dizzy) and her new medicine. She kept everything down, slept for a FIVE hour nap and was even giggling tonight. The next three days we will continue to give her the benadryl a half hour before her antibiotic. Then the next three days, just the antibiotic. After that (next Thursday) we should be able to start the study!!! We just have to go in for urine and blood samples. Also next Tuesday we will finally get to see her Otolarygnologist and figure out how to get the DMSA done. I am so thankful that she was able to take this today. I am relieved that we have one thing off of the list. It doesn't seem like so much of a mountain anymore.

Thank you everyone for keeping us in your prayers. I know they are heard.

Today is THE day

Today we are giving Quinn her first dose of the new prophylaxis antibiotic and Benadryl. She has never had either of them before and while I am a little nervous, I am more excited. We will finally know if she can take it, if she can possibly be in the study. The Urologist is coming over to our house for the first dose. I also am equiped with 2 Epipens (jr) just in case she goes into anaphylactic shock. I am well prepared and anxiously waiting to see how this goes. WISH US LUCK!

Friday, January 23, 2009

Fun is the SNOW!


This year was the first time that Quinn actually got out to play in snow. We were outside for a few hours and she was in HEAVEN! She gets this from her Daddy. It makes me happy to know that she loves something that he does too. Who knows, maybe she can go snowboarding with him instead of me?!?!?! I can stay at the hotel and maybe get a massage. hehe

Monday, January 19, 2009

First Impressions


So Quinn's Urologist and I have gotten to know each other really well over the last month. We have talked one the phone for hours at a time. She knows a lot about how I parent; no soda, sugar (unless natural... like in fruit) and I like to make all of Quinn's juices myself. I try to give her as much healthy food as possible. Yes, there are times when she gets unhealthy things (like chicken necks, hehe) but I try to keep that at a minimum. She also knows how I will suffer thru a headache for days before I take any medicine. I attempt to not give Quinn anything with unnatural food dyes. I try to do organic everything (unless we are short on cash). I try to keep my body, and Quinn's, as healthy and pure as possible.

While getting to talk to Buffy (the Urologist), I made a visual image in my head as to what I thought she would look like. I imagined a tall, slender blonde (not sure why blonde... but she was) that was dressed well and very up with fashion. In my head she was preppy and smart, the total package.

Well, we finally met the other day.

We were both a little taken back. Buffy is short and wild looking. Too smart to worry about fashion, make up or even blonde hair. I actually commented to Dan about how she was not at all what I expected. Not that Quinn's doctor's appearance matters in the least, but it was just weird how I created a completely different person in my head.

Well, the other day Buffy and I were on the phone coming up with our next game plan for Quinn and she (out of no where) said something like... "I've got to ask you if your hair color is really that dark". yeah right! I chuckled and told her that I wished it was natural. She then went on to tell me that when she first saw me she was taken back. After all, how could a Mom that even makes her on juice, Popsicles, and soups dye her hair?? How could a Mom that tries to keep her daughter on soy or vegetable everything wear makeup?? How could a Mom that doesn't take medicine unless absolutely necessary have black hair?!?! I told her that even super Moms like to look nice! hehe. She wasn't negatively judging me. She just did the same thing that I did.

It was strange to think about what you put off about yourself from a phone conversation, well... many long phone conversations. I thought that she was preppy and she thought I was a hippy. I guess that there are worse things that I could be portrayed as.

Saturday, January 17, 2009

Read this

So my cousin Amanda posted about this. I read, became outraged, signed the petition, sent out emails and am now posting about it.

http://blog.imperfectparent.com/2009/01/11/amazon-feeding-our-children-to-the-lions/

I understand that there are certain freedoms that Americans have. But I don't agree with this. I am a Libertarian. I wholeheartedly agree with the Government stepping back and granting its citizens the freedoms that we deserve, were promised. However, I also agree with protests, petitions and the like. I think that it is up to "the people" to decide what is ok.

This, I find not to be ok.
It seems that Amazon is selling pro-pedophilia literature. Please go to the above link and sign the petition. Hopefully we can make a difference.

Friday, January 16, 2009

Cute, CUTE, Cute

I just love my little monkey. We went to her group this week. We have been missing it due to doctor appointments and Christmas break. She loves group and I want things to get back to normal. We are both happy with normal. At group today we were singing "Wheels on the bus". When it got to the part of "the Mommy on the bus goes Shh Shh Shhh" Quinn looked at me and said "thas you Mommy, thas youuuu". haha
We finally bought her a big girl bed too. When Dan was putting it together she was screaming "happy hap-pyyyyy" over and over again. She thanked Dan (on her own...) for about 5 minutes. So cute. So now she feels grown up. Actually, I feel grown up too. I mean, when I had Quinn I felt like an official old "MOM" (and after just turning 24 a month before HA!) but now that she is talking, walking and more importantly expressing herself/feelings/interests; it is a whole new situation.
So I suppose that this is just a rambling of thoughts but I am really proud of who my daughter is. I want so badly for her to live a normal life, a simple life. She is on her last day of her antibiotics and she is still crying when she goes potty, every time. She actually woke herself up screaming last night when she went. It makes sad. It seems like the antibiotics aren't working.
So there are some new Mommy/Quinn pictures.

Family Fun

A day or so after Christmas we met with Dan's parents, Aunt Jean and little cousins Violet and Aden for lunch. We had a yummy lunch and then off the kids went to the Merry-go-round. Seriously, Quinn LOVES this thing. It is in one of our local malls. Also:
My Mom was supposed to come up for Christmas. Unfortunately she was sick and couldn't make it. She did come up on New Year's Eve though. Yes, I was picking her up from BWI when my car exploded. She was also the one that kept me and Quinn occupied at home while Dan went out and got us a new car. She was the person that convinced us that we should still go on our snowboarding trip and that Quinn would be fine. She was then the person that called us at 11:00pm to tell us about Quinn throwing up.
My Mom is one of my absolute favorite people in the world. I wish that we could have done more exciting and fun things while she was here. With her here we were able to take care of business and almost relax! Next time I promise that we will do fun things :) Since it was a little crazy while she was here, I only got two pictures of her. Next time that will change too.

Thursday, January 15, 2009

Christmas Post

Christmas Eve we decided to have Quinn open all of her gifts. She was so excited. She fell IN LOVE with her new little trinkets. So CUTE! We really could have only spent about five dollars on her and she would have been thrilled. When she opened her new clothes she set them aside and matter-of-factly said "no tank you". haha What a trip. On Christmas Day we went to Dover to my Grandparent's house. It was fun, food, family. What more can you need?!? We spent the night there and got to play games and just hang out. It was a wonderful day. And if you don't know, Quinn is absolutely in love with Annie, my little cousin. She calls her Mickey for some strange reason. The day after Christmas we went over to Dad and Annette's house. We had a lot of fun there too. Annette made us an awesome breakfast of French Toast and bacon and eggs. I unfortunately started to feel a little under the weather so I was quickly worn out. We had a great time visiting with Dad, Annette and Carol (Annette's mom). On a side note: Quinn LOVES Dad and Annette's dogs. When we leave there she always talks about "Zarna". I think that she thinks that there is only one of them. They actually have two dalmations. One named Zelda and the other Zana. :)

Tuesday, January 13, 2009

pickle snowmen and football

We have been enjoying this football season a lot. The Ravens are doing really (unexpectedly) well. This Sunday we play the Steelers for the AFC Championship I believe. Rich loves the Steelers and I used to be a Steelers girl before I got married. Dan even got Quinn a small "official" jersey of Todd Heap! Dan has a Ray Lewis Jersey. In the picture below I was wearing the Ravens Quarterback's (Joe Flacco) jersey from when he was in college. He went to University of Delaware!! Isn't that all the more reason to love this team?!?! With a rookie quarterback from UD!

Quinn has been feeling better too. We finally have her on medicine that she isn't having a reaction to. She is still a little out of it; not her usual self but I know that she is getting rid of her infection and that makes me happy. She has been drawing and coloring a lot recently. The other night I was in the kitchen making dinner, Dan was on his way home from work and Quinn was in the den drawing on her Aquadoodle. (coolest thing ever!) She ran in the kitchen so excited and was yelling this foreign language. She was so excited that I couldn't figure out what she was saying. I did hear "c'on, fall me" ~ come on, follow me~ So I went in the den and this is what she was so excited about. She had the biggest smile and said "Pickle Snowman". haha. Isn't she cute?? It really does look like a perfect pickle snowman. I just love her up! Notice the buttons and the scarf?? She did this all by herself!

Friday, January 9, 2009

So I decided that I would post this. It will help you all visualize what is going on in Quinn. Her one side is only a grade 2. Her other side is grade 4. If it was grade 5, she would have to have immediate surgery. Luckily for us, it isn't. (In case you can't tell, the tube thing is her ureter and the oval thing is her kidney and the black stuff is the urine going backwards from the bladder) :)

Thursday, January 8, 2009

Quinny poo

I will post about Christmas soon.

Due to Quinn's inability to keep her new antibiotic and therefore any food/liquid down, we have taken her off meds. We are getting her culture back tomorrow and hopefully the doctors will be able to find an antibiotic that 1. will work and 2. she isn't allergic to. So lots of laundry, lysol and down a cashmere sweater and an area rug.

Where we stand now:
***We got her culture back and we are trying her on the first antibiotic again. We are hoping that the rash was a symptom of her stomach virus and not an allergic reaction. I am keeping a close watch on her and hoping not to see a rashy/itchy baby. So far, so good. I was informed that if this doesn't work, we could try her antibiotics through an iv. I am not too keen on that. Quinn's urologists (Buffy and Dr. Mathews) are talking all of this over with her otolaryngologist (Dr. Tunkel) about maybe being able to give her a little bit of Benadryl so that we can get this infection treated before it becomes an infected bladder and kidney. ***




On a cute note though~
Quinn loves chicken nuggets. She used to only get soy ones. She still does most of the time but sometimes we just get the cheap frozen nuggets from the normal grocery store. Anyway, Quinn calls them "chicken necks". It is so funny to hear her ask for chicken necks. No, she has never eaten a chicken neck (does anyone??) but boy it is adorable.

Wednesday, January 7, 2009

Yippy

The one class that I really wanted to get in to, I was on a waiting list for. I was number 10 when I registered for it. I just checked it and I am enrolled finally! Yippy! It doesn't take much for me to get excited now-a-days :) I will take anything.

While I do use this blog to vent and post my concerns; I want everyone to understand that I know that we are completely blessed. There isn't a day that goes by that I don't truly appreciate my husband and my daughter. I am glad that we are together and completely in love with one another. I adore my husband. I am madly in love with him. I also couldn't have picked a better spirit to be my daughter. She is completely incredible to me. While I know that she is only two, her soul seems so much older sometimes. (and then there are times when she acts like a 2 month old!!)
I guess this post is just to let you all know that I am not going to be in the dumps forever, I am not getting depressed, and to tell you sorry for all of the "downer" posts recently.

Princess Update

Let's see, on Wednesday she had her exams and then my car blew up. Wednesday night she also started her prophylaxis antibiotics. On Thursday Rich came to our house and we had a lot of fun. I also got my new car (*there will be another post on this later*) On Thursday evening Quinn had a rash covering her body from head to toe. I called her Urologist at Hopkins and they told us to stop her meds and to watch the rash. On Friday evening her rash was pretty much completely gone. Dan and I had a snowboarding vacation scheduled for Saturday to Sunday at a mountain about 40 minutes from our house. We weren't going to go but we were convinced by numerous family members that Quinn would be ok and that we needed a break. I knew that we did need a break and since it was only about 40 minutes away and my Mom was there to watch her... we decided to go. Quinn's rash wasn't serious hives or anything and she didn't have a temperature or swollen face or anything, just a lot of little bumps.
So Saturday we had fun on the mountain. I had a much needed snowboarding lesson and Dan got to hit some powder. We ate an early dinner around 5:00pm and quickly fell asleep out of pure exhaustion. Well, around 11:30pm my Mom called us. Quinn was throwing up and crying. We backed our bags and headed home. I called her doctor and she said that it couldn't be from the antibiotics because it had been more than 24 hours since she last took them. It most likely a virus. When we got home Dan had clean up duty, Mom had to clean herself up and I took over comforting and holding Quinn. She was so scared. Well I pretty much stayed up all night with her. Then the next day, she was fine. However... I caught it and now Dan has it. Quinn's Pediatrician and Urologist both think that the bumps were a symptom of her virus and not an allergic reaction to her medication. Which is good. However this morning she woke up with the same symptoms as she had before with her UTI and well, we went in to the doctors and she has one again. My Poor Princess cries when she has to go potty. Her doctors think that she is predisposed to have them because she holds her bladder so long. (mind you that on Wednesday when she had her exams and was cathed... they took a sample and she was clean)

The problem now is that she is getting infected urine into her kidney which is causing a lot more damage than just plain urine. Her one side is pretty serious and that makes me (and her doctors) nervous. So we still need to get the next exam done (dimercaptosuccinic (DMSA) scan) which is where they use a gamma ray to tell how much damage has already occurred. The problem with this is that she needs to be completely sedated and she can't be because of her laryngomalacia. So we are waiting to get another appointment with her Otolaryngologist so we can see what approach we can take in order to get this exam done. She is scheduled for Feb. 3rd with him right now and her Urologist is calling him everyday to see if he had a cancellation.

We now have to wait for this UTI to go away and then hopefully we can get into see Dr. Tunkel and then get her DMSA done asap. I was talking to her Urologist on the phone today after Quinn's doctor appointment and she mentioned that if she keeps on getting UTIs and if we can't find a proper prophylaxis antibiotic, that surgery might be the best bet. Quinn is now on a pretty much liquid diet. She can have one solid meal a day. We are trying to force her to void and therefore flush her system out. We will have to do this for a few weeks.

Please continue to pray for us. I am just waiting for a break for my happy girl.

(*I tried to add a picture to this but couldn't for some reason)

Thursday, January 1, 2009

Updates

Quinn's tests went wonderfully. She was so good with her ultrasound. She cried a lot with the other exam but was a trooper. She does have reflux on one side of her bladder to a level 2 and the other side is a level 4. (level one is with only a little bit of urine flowing into her ureter and a level 5 is urine flowing all of the way into her kidneys completely.) The level 4 side is sort of serious. We are getting her kidney checked soon to see how much damage has already occurred. We are praying that it is minimal. She is on an antibiotic. She will have to be on it until she out grows the reflux or until she gets corrective surgery. The doctors are hopeful that she will out grow the level 2 side. The level 4 side they think that she will most likely need surgery. Please continue to pray for her. :)


Then the big bang story...
After Quinn had her tests done we took her home to nap. My Mom was flying in to BWI and I went to pick her up and Dan stayed with our sleeping beauty. As I was circling the terminal and waiting for her to get her luggage, my car did this weird chug thing. I was on the phone with Dan and I decided that I would pull over to see what was going on. Then my hood started to smoke. It was really windy here and I thought that it might have just been exhaust from someone else's car. Then I saw a few sparks and a lot of smoke. It was bellowing out from under my hood on the left side. Then there was a big flame. I told Dan that "my car is on fire" and hung up with him. (panicking husband at home) Then more and more huge flames started to bolt out from under my hood. I jumped from the car and began to shake. I then remembered that my phone and wallet/purse were still in the car. So I quickly decided to try and make a grab for them. I threw everything into my purse and flew from the car; slamming the door shut as I ran. Well I caught the straps in the door and everything spilled out onto the windy road. I kicked my license and phone to the trunk end of my car as more flames started flying from under my hood. I called 911. As this was happening a kind, sweet man stopped his car and told me that I needed to get far away from the car. He gave me a ride to the terminal. (I pulled over about 1/4 of a mile from the terminal) I got in touch with the police and firefighters. There were 3 firetrucks and many police. They had to shut down the roads into BWI (there were a lot of angry people) and try to put out my car which happened to be completely engulfed by this time. About 30-40 minutes later the fire was out and the police and firefighters were working on getting my car removed to some special towing place for burned cars. Then the slowly started to open but the roads again. Dan called my Mom and let her know that happened and we were able to meet up. Since I had the car seat, Dan wasn't able to come and get us. One of our most favorite friends picked us up and brought us home.
Dan looked on the BWI website ands they had to postpone all flights. yes, it was me and Lola the Corolla. :(
Thankfully I am not hurt. Honestly, I am still a little shaken up. I even jumped in the parking lot of the grocery store tonight at some car's exhaust. I will be fine. What is a complete miracle is that Quinn wasn't with me. She is ALWAYS with me... everywhere I go. It is wonderful that this happened when I was alone picking up my Mom and not 2 or 3 hours earlier when we were bringing Quinn home from the hospital. The whole dynamic of the situation would have been completely different if Quinn was there. But she wasn't... she was safe.

This was my least favorite day of 2008.