Whirlwind of A Week!

Wow!  This past week has been a whirlwind!  On Thursday, a week ago, Madi started getting sick.  High fever, head ache, really bad cough, and no appetite.  On Saturday, Brooke decided to join in the fun with a sore throat, and the same high fever, bad cough, and lack of appetite that Madi still had.  Monday, I took Brooke and Madi to the doctor.  Brooke had a strep test done that came back negative, so the doc essentially called hers a virus/cold.  And, the doctor, based on my description and Madi's symptoms, determined that Madi had Croop - a complication of the same cold/virus that Brooke had.  We were hoping that this would all go away soon, and that it would keep away from Taylor because of its terrible respiratory symptoms, but it didn't.  On Monday, the nasty bug started presenting itself in Taylor.  She had a cough and a fever, but since she is fed by G-tube, the lack of appetite didn't exist - nor did the headache.  All were absolutely MISERABLE unless the "magic drug" (ibuprofen) had been in their system for an hour or so.  Once it started working, it was like they were brand new children... sorta tricked us, actually, into thinking Brooke could go back to school on Wednesday.  But, we were wrong... when that night came around she had yet another temp of 102.6.  No school for her!  So... no school for Madi or Taylor at all this week, and we are waiting until the morning to see if Brooke goes today (Thursday) or not.

It has been a week and Madi is still miserable.  Fevers every day.  She didn't go to bed until 11PM tonight. While we were at the doctor, she was prescribed Albuterol every 4 hours and Pulmicort twice a day.  Brooke was prescribed Pulmicort twice a day.  I think the fact that we caught, and started treating, Brooke a bit earlier than Madi has helped her in kicking this thing a bit faster.  But, I am hopeful Madi will turn the corner soon.  Taylor, on the other hand, is have a rough go at it.  Her sats are low (dropping to 87) and her heart rate is extremely elevated (160-180 when awake).  She is coughing and has a fever of 103.8.  When ibuprofen isn't in her system, she is very tired and wants to sit on my lap.

So... some other things about the week:

I uploaded Madi's birthday pictures yesterday... be sure to take a look if you want to!

I took my RN entrance test on Friday (the TEAS test for RNs).  I was a bit nervous when I sat down and heard others talking about the "online study guide" which I knew nothing about.  However, I did pretty well.  I got a 91% National Ranking and passed with flying colors. I would have done better if I had known that Physics, Earth Science, and actual Chemistry were going to be on it, but everything turned out OK in the end.  One last step remains before I am officially "in the school of nursing", and that is the application being submitted.  I don't think I will have a problem with this part since my GPA is a 3.7 now, but I guess time will tell.  They pick the top 60 students with the best GPA and the application period is the beginning of February.

I had my first class for the second part of my Anatomy and Physiology course this past Saturday.  I have it from 9am - 1pm every Saturday for the next 16 weeks.  I chose this class so that I didn't have to worry about finding a babysitter on Tuesday and Thursday nights when Kenny was out of town (that is when the other class was available).  I'm excited about this class, actually, as it is so interesting.  It won't be easy, but none-the-less, still interesting!  I am taking it with a different professor than I had the first semester, so that will be challenging - adjusting to different teaching styles, and testing styles, etc.  This professor gives 4 exams:  says he gives about 2 hours worth of essay questions and then grades it in class so that we can go over it the same day.  The other teacher gave 12 exams (almost 1 per week):  75-100 hard multiple choice questions/matching/diagrams, and took a week or so to grade them.  I HATE essays, but I think I'll manage just fine :) That same day I went to work at PBK from 3pm - 7pm after class.  I was SO bummed because it was an "on call" shift, and when I called they told me I needed to come in.  I was hoping to stay home and relax, but oh well!

Nursing has been a bit crazy.  Last Friday and Saturday our day nurse didn't come in because she was sick.  Tuesday night our night nurse didn't come in because she had a bloody nose.  And, tonight - Wednesday, our other night nurse simply didn't show up.  I texted her 2 hours AFTER she was suppose to be here and she told me that the agency had put her on a different, and full-time, case and that she wasn't coming.  I was LIVID that the agency didn't call to tell me this.  I was so happy to actually be up doing homework/studying, or I would have never known... and we would have had a REALLY SICK Taylor with NO nurse, and she would not be getting her food that was scheduled, her meds that were scheduled, her diaper changed, her leg brace changed, or rolled over every two hours.  That is some SERIOUS liability on the agencies part, and they will definitely be hearing from me in the morning (well, 5 or 6 hours from now).

Today, I went to the ENT doctor.  I have, what I call, a nodule on the right side of my throat/neck that moves up and down whenever I swallow.  It is a bit sore and a bit painful.  It had been going on for about 2 weeks, so I figured enough was enough.  The doctor didn't seem terribly concerned about it, but did offer that it might be "Eagles Syndrome".  He said it was pertinent to do a CT scan today, but that if I wanted to know for sure we could.  I said that we could wait, and he said that I should reschedule for a month from today... and that if it got worse to come in sooner.  In a month, if it is still there, they will do a CT scan.  If it has gone, I won't go back as we have a $6,000 insurance deductible that we need to meet before they cover anything at all!  Yippee!

Tomorrow we are getting a hitch put on my van so that we can transport Taylor's powerchair wherever we go, whenever we need to take it!!!!  I am so excited, as this will give her such a feeling of independence and freedom when we go out.  And, I am more than happy to give that to her - ecstatic, actually - as long as she LISTENS while in her Mister Purple (we fondly call her powerchair "Mister Purple").  We shall see how it all goes!

Well, I am exhausted and must sign off.  I apologize if any of this is not coherent enough to understand or if there are way too many misspelled words... But, I know  you'll get over it, so thanks for your understanding!

Good Night XOXOX

Madi is Three!

Well, today was a great day!  Madi woke up FULLY aware that it was HER birthday today - "not yours", so she told me. LOL.  She knew this so well because we had her birthday party last night.  She had a blast hanging with the family (especially the kids), and she got so many great gifts... clothes, puzzles, coats, toys, drawing pad, a big girl Schwinn bike, a doll she names Suzie, and more.  Oh, the funniest gift she received was candy canes (because she asked for them)!  If you could have seen her face when she opened them it was pure excitement!  We were happy everyone could make it.

Ok, back to the "real" birthday day.  When she woke up, she was full of spunk and excitement.  She had school today.  They had celebrated her special day the previous Monday; however, I let her wear the "Birthday Princess" crown to school, and she would NOT take the thing off almost all day.  This birthday princess crown is a big ole pink hat sorta resembling a cupcake.  It has pink boa and tinsel trim around the brim, and many decorated fabric candles on the top... it was so cute on her (keep an eye out for a picture to come - either here on this post, or in the pictures link).  She wore it with pride all day, taking it off very seldom.  She got to hang out all day with no nap, and then she chose to go to Friendly's to celebrate!  We had a good dinner, but MAN they were SO slow!!!  They sang to her and brought her some balloons for her special day, and she watched them sing the first half of the birthday song CLUELESS that they were actually singing to HER!  Too funny.  When we got home, Kayleigh gave her the birthday gift she had bought, and then it was off to bed.  What a day!

I can honestly say that I am shocked at how quickly Madi has grown up.  It feels like just yesterday when she broke my tailbone during delivery and I couldn't sit for many months! LOL.  I'm kidding -- she is well worth it.  But, it truly IS amazing how fast time flies!  I plan on enjoying all of these little innocent years with her, as I know they are irreplaceable and some of the funniest things are said at this age.  She is such a big girl -- completely potty trained, totally independent, puts on her own shoes, pants and undies (we are working on the shirt!).  She is comical, energetic, full of personality, and able to follow instructions so well.  And last, but not least, she is SO SO SO helpful to me and Taylor (and the rest of the fam!).  She is literally my third hand during the day sometimes - with Taylor or anything else.  It amazes me how helpful she is - without even asking her to be!  She helps Taylor with getting toys, and shoes, and picking her blanket up for her when it is dropped, and getting her milk (rice milk) out of the fridge.  She is helpful to me by putting the diaper pad down for me when Tay needs to be changed and bringing me a diaper and wipes amongst many other things.  Like I said, she is quite an amazing little girl.  And, I love her dearly.  Happy Third Birthday Madster - I love you!!  I hope you enjoyed every bit of your special day!  XOXOX... 

Belly Drama

from January 5th, 2009 Little did I know that, tonight, when Taylor ASKED us to take her g-tube/mini button out, it would end up being such a major and traumatic process.

As  mentioned above, Taylor asked me to "please change my tube mommy" tonight as we were getting ready for bed.  She said it was hurting and she needed a new one.  So, as we have done ever since the surgery took place - just over 3 years ago - we got all of the supplies set up and ready.  We took the old tube out, but it was a bit more difficult getting it out than it is normally.  It seemed we had to pull harder than usual.  However, when we went to insert the new one, it simply would NOT go in.  There was so much resistance when we put it in the stoma and it just wouldn't budge.  We tried everything - surgilube, twisting, slanting - anything we could think of, but it was not going in.  So, after about 20 minutes of trying (and 20 minutes of Taylor freaking out, which she does even when things go perfectly), we decided to take her into the ER at the hospital where her surgery actually took place.  I stuck a 10-12 french suction catheter in the opening to keep it from closing up on us (it closes really fast, and would require another surgery if it did), and in we went to ER.

Ok, so I am going to try to make a 5 hour ER visit "story" as short as possible.  We got to the ER and went straight back, as usual.  The ER doc came in and assessed what was going on.  He felt that it would be best to call the pediatric surgeons in, so he did.  About 2.5 hours after we got there, the surgeons finally got to us.  They were in surgery initially, and then had to go to a trauma patient that had been med-vac'd by helicopter.  So, once they were with us, they did their own assessment, and told us we were going to get this tube back in for sure.  However, they indicated we were going to have to use dilators - long steel rods that are different sizes and diameter - and find one that fit the opening currently. Once they found the right size, they were going to insert it and then start to switch dilating rods - gradually increasing them in size - to get the opening to the proper size so her g-tube would fit in.

Ok... so that sounds quite painful to me - anyone else out there think the same???  I was ok with the process, as I preferred not to put her under for another surgery, so I consented.  But, I told them that she had MAJOR anxiety just replacing a perfectly sized tube in a perfectly sized hole at home, and that it would probably be best to give her some sort of med.  The problem was that she has never, since her g-tube placement 3+ years ago, taken a med P.O. (by mouth).  They decided to give her a TINY dose of ativan (3mL), but they pulled it up in THREE different syringes (1 mL each).  Needless to say, trying to give THREE of those to her by mouth proved quite difficult.  And, she considered it quite traumatic as we had to literally fight to get it in her mouth.

That was done, and the pediatric dilators were ordered.  However, when opened, the smallest dilator in the pack did not fit into Taylor's stoma.  So, the doctors ordered another set - with smaller dilators - that nobody could locate or even seemed to know about.  While nurses were looking for the smaller dilators, the surgeons tried to stick the originial tube in (that we had brought with us from home) and they couldn't get that to budge.  And, because they had already removed our "placeholder" and didn't want the hole to close up, they decided to go ahead and use the hemostats to try to stretch it -- yes, hemostats... those things that open and close (and look) like scissors, but clamp blood lines off, etc.  That didn't work either, and I was so alarmed and nervous seeing those go into my TayTays belly that I could hardly watch.  That said, the surgeons went hunting themselves and finally found the proper dilators and it was game time.  Now, Taylor had NOT had a nap that day, and it was now past midnight.  She had also had a small dose of Ativan and had already been through some major trauma.   So, while the search for the proper tools ensued, she conked out.  But, never fear, when they showed back up in the room with the right tools, and turned the lights on to start the procedure, she woke up immediately.  And, her state of mind was NOT drugged.  She either didn't get enough ativan, or it had worn off.  But, as they started stretching the hole she started freaking out (as I would have).  She said things like "mommy, please help me", and "owie - you are hurting me (to the doctor)", and "please stop - I just want to go to sleep".  It was so heartbreaking, but I knew we had to do it.  The funniest part of it all was when the nurse asked her if there was a song she wanted to sing, and she responded loudly, emphatically, and forcefully, with "Nooooo!!!!".  In adult terms, it sorta sounds like "Shut the *^%$ up and leave me the %$^# alone".

Once the procedure was done, she was so relieved.  She said, "It's in, mommy? My tubies in?".  We told her yes, and that she was such a BRAVE little girl and she was so excited to have her tubie back in so that she could leave... do ya blame her :)

Note from mommy:  This little angel of mine is SO very BRAVE.  The things she has had to endure at such a young age makes me so sad, yet she is so amazingly good about it.  She amazes me, inspires me, and changes me for the better day by day.  Her attitude is incredible - happy, spunky, angelic - even after all the bad stuff - and her will to get through and move on to the next thing is superb.  I love you Tay!!!!  You are such a blessing to this family and we love you!

Happy New Year - Goodbye 2009, Welcome 2010

Wow.  What a great beginning to a great New Year!  I got to hang out with the girls all day, and then when Kenny got home from hunting, I got to go on a "mom and me" date with my little Brookie!  We went to dinner at CiCi's (her choice) and then we went to see the new Chipmunks movie.  I think it was called "Alvin and the Chipmunks, the Squekquel".  We had an awesome time, and we both thoroughly enjoyed the movie and the time together.  What a fun little girl she is :)  So sweet, funny, and smart (oh, did I mention she's quite talkative)?  I hope this is a great year, and I also have to say that I hope this New Year brings a cure or treatment for SMA... if not, at least we are one year closer!!!

Yesterday, we hosted our very first New Years Eve party.  We normally have a couple over to eat dinner and to celebrate (which is a party in itself), but this year - they came, in addition to quite a few other couples!  It was a blast.  Friends, drinks, steamed shrimp, tenderloin, chicken, sausage dip (yum), cranberry and white chocolate chip cookies, and more - yum!  We retained a sitter for the kids (our kids and those of the guests), and they had a great time with one another.  Althought it wasn't planned, the kids were definitely up to bring in 2010.  They went to bed the latest they have EVER been to bed at home.  XOXOX.

Christmas 2009

Wow!  What an AWESOME Christmas we had this year!  There were SO many things to be thankful for, but I am most thankful for having everyone at home together on this special day.  No hospital stays to worry about, and nobody sick... everyone was healthy and happy!  What a blessing.

Yesterday, Christmas Eve, we had dinner at Granny and Pa's, and then had our Christmas at Mom and Dad's where we opened some pretty cool presents: Carrie Underwood tickets (woohoo!), enough musical instruments to create a band, vests & scarfs, and more.  Today, we had a fun-filled Christmas morning at our house, and then we went back to Granny and Pa's for some more family fun, presents, and Christmas cheer.  Once we got back home, we all took a nice, and well needed nap.  We woke up, got ready, and went out to dinner.  After dinner, we went to see a house in the neighborhood that had lights that "danced" to music on a specific radio station.  THAT was super cool, and the girls (and Kenny and me) really enjoyed parking for a bit and just watching how the lights changed with each beat, and faded like each note! 

I have to say that Santa brought some really good stuff to the house this year (as he always does!).  Brooke's favorite Santa gift this year was definitely her pink BB gun (see the video of her opening it here in the video link - coming soon!), with her new "cool" blue bike as a close second.  She was emphatic that she didn't like pink or princesses anymore.  Taylor's favorite gift was simple:  sparkly pens and paper - she loves drawing and writing.  But, she also loved the bean bag lap writing desk that she can now use to write and draw when she is sitting.  It gives her a large, hard surface to write on which makes it much easier than her lap or a book :)  Madi enjoyed playing a bit with everything she got... her baby, her doctors kit, her clothes, her books - but, she hasn't been able to go out in her biggest gift:  a new power wheels Barbie Jeep.  It has been cold and rainy all day :(  Nurse Louise also brought the girls some gifts to open, all of which they loved!  Brooke got a BFC gilr, Taylor got a Moxie girl and a tinker bell nail/cosmetic kit, and Madi got a LPSO dog, who she fondly calls "Foofoo".  My favorite gift was what my girls got for me:  a sterling silver necklace with a cut out heart in the middle that has each of their names stamped under the heart :)  LOVE IT!  But, seeing Carrie Underwood is a close second!

Thanks to everyone for a wonderful holiday!  What an awesome couple of days! XOXOX.