I just have to tell you about my new toy. It's called Bowdabra. (think Abracadabra)

As most of you know, after being a mom to 3 boys, I finally have my little girl. Of course, little girls simply must have coordinating outfits right down to the shoes on their feet and the bows on their heads! Those hair bows can get downright expensive though!!

...My new toy is the solution.

Bowdabra is an easy-to-use crafting tool people use to make professional-looking, hand-tied bows at home. You can use just about any type of material in a Bowdabra to create beautiful bows for gifts, baskets, holidays, home decor, bridal decorations, hair accessories, and much more!

Let me show you my very first attempt at a hair bow using the Mini Bowdabra...



...the Mini Bowdabra



...The Curly Ribbons



...Other supplies needed. (Scissors, Glue, Wire and an Alligator Clip.)




...EASY as 1,2,3




...VIOLA, it's finished!!!




Not too bad for my first bow eh?






Bowdabra can be found in retail stores like ACMoore, Michael’s, Hancock Fabrics, and Garden Ridge. They are also available online here: Bowdabra


I can't wait to try out some new and unique bows in my Scrap booking and Cards.



I wanted to share with you some adorable pictures I found online of a Dachshund- caring for a baby piglet!!











"This mama doxie is fostering this guy for another mom who couldn't take care of him. He had his eyes closed, but now they are open. He is just a little bigger than her other pups. She loves this little guy more than the other puppies and she is nursing him back to health. He is the cleanest puppy ever because she licks him all the time."























Oh wow. I can't begin to describe how much this touches me. I mean, this is the exact same feeling that we have for our Princess. The blood running through her veins may not be that of ours, but our hearts dont pay attention to such inconsequential details.


I've decided to make most of my Chiari related posts over on a Caringbridge page that I created for NJ. I figured it would be easier for me that way. Plus, there are people in my life that do not read or know anything about my blog. I'm not sure I care to share that information with them. This is a place I don't want to worry about what I post or who I offend you know? Instead of referring them here to read updates, I can guide them to the Caringbridge site.

So anyway, here's the link if you are interested. I'll still post Chiari related things here every now and then, but mostly it will be on the Caringbridge page.

Thanks!

http://www.caringbridge.org/visit/nicsmith

<----- Here is the MRI scan at diagnosis back in 2003. It shows an 8-10mm Tonsillar Herniation.

What is Chiari Malformation?

Wednesday morning NJ and I got up early and caught the shuttle that runs from the RMH (Ronald McDonald House) to the Hospital. (Comer Children's Hospital in Chicago)

We were taken back right away. They explained that because of the length of the MRI scans they wanted to sedate him. Instead of General Anesthesia for MRI scans, they now liked to give some kind of medication through IV. It kept them asleep and didn't have as many side effects that General Anesthesia has. (Less vomiting upon waking up and there was no breathing difficulties associated with it) I agreed and they attempted to begin an IV line. 6 pokes later we all decided enough is enough and he was given a mask and immediately drifted off to sleep. (He was NOT a happy camper by that point!!)

Once asleep they got the IV in right away. They would be looking at his Brain, Neck and Spine and expected it to take about 2 hours. I headed out to the waiting room where I sat and waited... and waited and waited and waited. I watched so many people come in for their tests and leave. I was starting to get really anxious. One of the moms I met at the RMH surprised me and came in to wait with me. Words cannot express how nice I thought that was of her. It was perfect timing too, just when I was officially about to lose it. Her son G has a Chiari Malformation and they've been in my shoes before. Nearly 3 hours later, they finally called my name and I was let back to see him. He had a very difficult time waking up and didn't really care to eat or drink anything. I was sure he was going to get sick once he took some apple juice, but he never did, thank goodness!
_________

Thursday was our appointment with the Neurosurgeon. I'd been warned by many of his other patients that Clinic Day (Thursdays) was terribly busy and because we were new patients we could expect to wait for many hours. I was fully prepared to wait the usual 4-5 hours. We'd brought books, handheld games, art, food and drinks. We checked in and sat down to make ourselves comfortable.

Much to my surprise we were immediately called back. WOW! At that point I thought to myself:

"Okay, so I guess we're going to wait back in the back room for hours and hours?"

NOPE! One of the resident Doctors came in right away. I can't remember his name, but he was a young Asian man. He was nice and listened to all of NJ's symptoms and reviewed the old MRI scans (One can be seen pictured above) that I had brought along with us. He excused himself and once again, I thought:

"Great, NOW we will sit and wait."

.....Only we didn't! Maybe 10 minutes later, Dr. Frim opened our door and walked in. I recognized him from the photos on the Internet. Just as he was about the close the door, a little girl of about 5 came running up and grabbed onto his leg. She was so excited to see him! He leaned over and picked her up, continuing to chat and play with her. It was very clear at that moment that this was no typical Neurosurgeon. He finally put her down and promised to come see her after he was finished with us. He then closed the door, sat down and made himself comfortable.

Such a striking contrast from our first Neurosurgeon at the Denver Children's Hospital. That Doctor literally spent 30 seconds with us. He was in, out and wouldn't have given us the time of day if we paid him. (...oh wait, we did pay him!)

Not Dr. Frim.

Dr. Frim answered all of my questions, offered his opinion and gave me all of the pros and cons. He spent a lot of time talking and joking around with NJ, which I really liked. He noticed NJ had on a Denver Broncos shirt and joked with him that if we were Bronco fans, he wasn't going to be able to be his Doctor! (He was kidding of course) I think on surgery day, we'll have to find some Bronco tattoos and put them on NJ's neck just to mess with him!



<---- Here is the 2008 MRI scans showing a 12-13mm Tonsillar Herniation


The new MRI scans were not too different than the old scans, but scans can't show everything and so we must look instead at the progressively worsening symptoms. Dr. Frim sees all of NJ's symptoms in his Chiari Patients and sees many of those symptoms decrease and/or dissapear after surgery. While there are no guarantees, there is hope.


It was a good decision to travel to Chicago. We loved the Doctor and his staff! We are at peace with our decision to move forward with the surgery. It's strange to write that, but we really are. My husband and I are more concerned with the logistics of having to be in Chicago for about 2 weeks than we are about our son getting ready to have brain surgery. That alone speaks volumes doesn't it!?

Surgery is scheduled for March 19th.

I have so much to post and so little time!

Our flights home today were pushed back due to the weather. We are scheduled to fly home tomorrow, but I'm not holding my breath as it appears there is more bad weather is expected closer to home.

The verdict: NJ will be having surgery for his Chiari.

We fell in love with the Doctor. He is certaily unlike any other Neurosugeon we've ever met! So down to earth and straightforward. He lacked the egotistical/God-like attitude often held by surgeons. He was amazing with NJ and made him feel so comfortable. We made the right choice to come here to Chicago and we all (even NJ) feel comfortable moving forward with surgery.

I'm posting from the Ronald McDonald House. (Which is absolutely beautiful by the way!) We are getting ready to visit the Shedd Aquarium with a few other families staying here at the RMD house. I told NJ after several days of appoitments and stress, he deserved to go do something FUN.

Edited Friday Evening:

Hmmm, where do I start? I guess from the beginning!

Tuesday we arrived via Angel Flights. The flights were pretty uneventful. It was quite the experience riding in those little itty bitty planes though!! I was impressed that neither NJ or myself lost our stomachs. I felt like a sardine squished up in a tin can. All of the pilots were very nice though, and the 3rd one even drove us directly to the Ronald McDonald House himself once the plane landed!

Once at the RMDH we checked in and were given the grand tour. And I mean GRAND tour. The house is spectacular. It's huge. The Kitchen is to die for. There is a computer room, several living rooms and playrooms. The main playroom is decorated with Pottery Barn Kids furnishings and filled with wonderful toys for all ages. The Princess would have a blast in there! Our room is nicer than many hotels I've stayed at. In fact it resembles an upscale room at Hotel Monaco that hubby and I stayed at once in Denver. If I ever win the lottery, let me just say that I know without hesitation what organization I will be donating too.... Ronald McDonald House Charities. Hands down. I've now seen first hand how important this kind of place is for families that must travel for Medical care. Nearly every night (and sometimes lunch time too) people come in and volunteer to cook for the families staying here. Not only does it help the pocket books of those families so they don't have to grab take out, but it provides a healthy home-cooked meal when they otherwise would not have one. Tonight, a College Fraternity came in and cooked Dinner for all of us. It was great seeing all the College students in the kithen making dinner together! The House Manager and staff have all been wonderful. Making sure we had everything we needed at all times. From the time we arrived, we've felt so comfortable here in Chicago all because of the RMDH and the other parents staying here.

I've been SO LUCKY to meet several other Chiari parents over the last few days. And while our stories are as different as the places we come from, they have all been so supportive and wonderful! I know NJ has really benefitted from meeting the other children who've already had surgery and seen first hand what he is to experience.

Well, I'll continue later this weekend from home. I've got to start packing!

Yay. Finally, travel arrangments have been arranged. Angel Flights pulled through!!! Tomorrow (Tue) we're traveling to Chicago and on Wednesday, NJ has a full round of new MRI scans. It should be interesting to see the difference between the scan that was done 4 yrs ago and now. Plus, neither of the other Neurosurgeons that we saw did complete scans. Of course, unbeknownst to us. (We didn't know any better.) Now we do and are looking forward to the advice and guidance from an expert in Chiari Malformation!

Wish us luck.

I've been so sick...I mean, I think I know what it feels like to die sick! It really hit me like a brick wall, crept up on me from a simple cold. The Doctors said it's Pneumonia from exasperated Asthma. (er. something like that, my head wasn't fully comprehending words at the moment) The Doctors contemplated admitting me to the hospital because my oxygen levels wouldn't come up over 87. Instead they stuck me up with 2 shots (Steroid and Antibiotic) and loaded me up with $198.00 in prescription medications...BLECH!!!! I am not joking either. I guess it was cheaper than a hospital stay.

Anyway, today I'm awake and conscious enough to start worrying about finalizing the trip to Chicago next week to see NJ's Neurosurgeon. After making several phone calls I am starting to really worry...

First, the Angel Flight people have not been successful at securing flight arrangements for us. Great! Commercial tickets are running about $400 a pop right now. Yeah that should be easy to swallow after just spending $200 at the Doctors office. (yes, I'm being facious)

Second, the Ronald McDonald House has yet to confirm our reservation. We called the Doctors Nurse whom was supposed to get that taken care of... well somehow, someone dropped the ball and they have no information about us coming. Great!! Of course, the nurse has left for the day and Monday's a Holiday. (Do Neurosurgeons work on Presidents Day??) Tuesday we're supposed to be there in Chicago, checking in for MRI scans bright and early Wednesday morning.

GREAT!!!!

(Can you hear the stress in my voice??)

BLAH

I think I need to go back to bed now.

I just wanted to share a few Cute-isms with you. Our Princess didn't talk for so long, and now she talks non-stop! Some of the cute things she says...

Goosebus "Mommy, boys riding the Goosebus!" (aka SCHOOL BUS)

Lello
Me: "What color is the School Bus?
Her: "Color Lello" (aka YELLOW)

Which brings us to the next Cute-ism. When naming colors she must say the word COLOR before saying the color. For example:
Me: What color is Daddy's car? "Color Red!"
What color is your blankie? "Color Pink!"

Bob-Um
"I need wipe my Bob-Um" (aka BOTTOM)
*this is absolutely my favorite! It's SOOOOO adorable to hear her say. So much so that I hesitate to correct her to say it the right way!

"Poo Poo Potty. Have too"
She simply can't say, I have to poo poo potty. It's always backwards with a slight pause in the middle. She repeats it over and over until someone encourages her into the bathroom and onto the toilet. "Poo Poo Potty. Have too... Poo Poo Potty. Have too...Poo Poo Potty. Have too..."

We've been on a waiting list for PCIT for a long time. 7 months or so! Last week I got a letter in the mail inviting me to our first *informational session. I went and let me tell you, it's good stuff!! I can't wait to get started in the program.

What's PCIT?

First, it stands for "Parent Child Interaction Therapy". It's a specialized behavior management program. Designed to help parents deal with children with oppositional/defiant problems, aggressive behaviors, ADHD, or those children experiencing adjustment problems. It also helps children impacted by substance abuse, physical abuse/neglect. Children in foster care placement, those recently adopted or reunited with parents.

The goal is to reduce stress, anger and frustration of the parent. It helps to improve the parent/child relationship, improve the child's minding, listening and improve self esteem.

So why does our beautiful little Princess need such a thing?? Well looks can be deceiving! Our Princess is a handful.

She seems to lack impulse control. Not so unusual in a toddler, but the older she gets we find it is not improving. She doesn't seem to understand she can't do certain things because it's not safe. For example, running away from us in a busy street. Grabbing things off the counter top or stove, climbing and jumping off furniture, tabletops etc. She is also extremely oppositional. It's something her Occupational Therapist and I have discussed at great length. She is becoming more and more difficult to work with. If there is something that we'd like her to work on, like drawing a line from point A to point B (for example) she will outright refuse. When we try and encourage her, she goes into complete shut down mode. She literally goes into her own little world. A world in which she refuses to speak or make eye contact. If you physically try and course her it will bring on a full blown tantrum. She's a teachers worst nightmare!!

Anyway, I'll definitely share with you any tips I learn on the way from our PCIT training. Click here and here if you are interested in reading more.

So the ENT thinks NJ's ear looks pretty good! The small hole left over from the ear tubes he had as a baby is very tiny and in a perfect location. The Doctor feels as if it is almost acting as a built in, permanent ear tube! He sees no reason to patch it up. Most importantly, he sees no sign of a Cholesteatoma!!

All great news right? Well, yes... kind of. He also feels that the symptoms NJ presented with were very concerning and because of his medical history, feels NJ needs to have an MRI to check on the progress of his Chiari Malformation. I explained that we already have one scheduled in a few weeks, and that we also have an appointment with a Neurosurgeon. The Doctor was was glad and said we're doing the right thing. That freaks me out! I'm soooo glad we're going to Chicago in a few weeks.

We're supposed to followup with the ENT a week after we get back from Chicago and keep an eye on his ear in the meantime.

Feb. 20th can't get here soon enough. I just want to know what's going on inside the boys head. Is it bad enough to be stressing over?? I'm worried. I can't help it.



**This post will self destruct soon due to personal information shared within. Thanks for understanding!


 

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