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.

We Made It!

Well, we made it to good ole Salt Lake City. It was an EXTREMELY long day. We left the house at 2:30pm for a 4:55pm flight - security can be a bear with medical equipment! We arrived in Salt Lake at 11:57pm Virginia time.

Details: We boarded the plane in Richmond, and got to wave to Daddy, Brookie, and Madi when we were out on the Tarmac. They were able to see us from the window. We connected in Cincinnati, where Taylor TOTALLY knocked over my whole large sized diet coke - all over the food court floor in concourse B. That was really the only disaster of that connection. Oh, but I guess I forgot about the fact that there were STAIRS we had to go up to actually get into the Cincinnati airport from the puddle-hopper plane. Uhm... what would they have done if Taylor was in her 215 pound power chair??? That certainly can't be lifted up the stairs like a Graco stroller can! And I can GUARANTEE that "calling ahead" to arrange these things does NOT help at all - been there, done that... and still get questioned about all our bags we bring on the plane! Upon our arrival in Salt Lake City, the cart I put all of the medical equipment and push/pull through the airport was deemed "lost". We always check it at the door of the plane, and it is then put under the plane in a spot where they know it needs to be pulled up for use as soon as the plane arrives at the gate. Hmmm... we had it when we got onto the flight from Cincinnati to SLC, but somehow it was lost during the flight (be sure to watch out for metal carts falling from the sky!) Fortunately, Amber was able to get a gate pass and arrived just as I was about to try to carry it all AND push Taylor's stroller up the ramps, through the SLC airport (which is HUGE), and to baggage claim. When we got to baggage claim (via the electric cart which actually picked us up after a phone call by Delta, thank goodness), the cart was sitting there. The cart is not much help all the way at baggage claim when I have bags that I need to put into it. But, I guess I shouldn't complain too much since they did call the electric car to help us instead! At any rate, we were very happy to be here, but it was a LONG 9.5 hours for sure!

We got to Amber's car, and it took a little bit to figure out how to get everything to fit into the car. If Amber didn't pack like she was moving, when she was only going to be gone for 5 days, we wouldn't have had a problem... just kidding Amber -- you know it is funny! In the process of getting everything organized, I TOTALLY bent the wheel of the "lost" cart, so now it rolles all lopsided and crazy. That's okay, though - it still rolls none-the-less. Amber and I laughed a lot about the whole process, becaues the last time I was here, it was even harder to fit everything into her car, and I ended up with the big ole "lost" cart on my lap in the front seat!

Once we got to the hotel (probably about 1am), we had a minor issue. The room they gave us initially was not what I had requested, so I had to go ask to switch rooms... we needed an extra bed! Once that was situated and we moved into our final destination, Taylor hung out with Amber, whom she had been asking about for ALL 9.5 hours of travel. She really enjoyed the time with her. I caught up with Amber as well. I got all of Taylor's medical equipment unpacked, put together, plugged in and ready to go. Once I finally got all that done, it was 4am... and Taylor was still wide eyed and bushy tailed - playing with a VERY tired Amber. It was then time to go to bed, and we were all out for the night.

Brooke Loses Her 4th Tooth!

Today, Brooke was eating lunch with Grammy and Pappy when she bit into a tortilla chip and cracked her already loose tooth almost all the way out. What happened really hurt and really made her tooth loose (she has been trying for WEEKS to get us to pull it), so out it came! I can't believe my Brookie has lost FOUR teeth. The weird thing: all four teeth she has lost have been on the bottom. I'm not really complaing, as keeping those top baby teeth keep her looking younger, but I just find it odd.

At any rate - she is getting so big, and it makes me happy and sad all at the same time.