#r4rh2014

Run for Ryan House 2014!

What is Ryan House?

To us, Ryan House is a home away from home for our WildManWillie. 

Williams entire life has revolved around a qualified care taker caring for him. Richard Leon and I have evolved into quite the professional care takers and everything we do is to perfectly meet Williams medical needs. To manage Williams life threatening conditions, it takes 24 hour care. 

Managing the health care needs of a non ambulatory 4 year old with a Trach, Oxygen, and G-Tube with special diet is very important and not just anyone can manage these medical complexities- among other complex needs of profoundly disabled children.

To manage Williams health needs, we absolutely have to commit ourselves to the intense daily routine of:

Trach care
-the Trach site must always be clean, and is at an extreme high risk for infection. William gets a new sterile Trach placed into his airway every Monday and gets new Trach ties twice daily. 

Suctioning
-Williams Trach requires frequent suctioning of secretions. Hands must be clean, and a clean sterile suction caterer is used for suctioning of the Trach. This is something that is done randomly 24 hours a. Day as needed. William sometimes requires 10 suctions a day, and other days requires 100 suctions. It really just depends!

Oxygen
-William is on continuous oxygen, and we like his blood oxygen saturations to be above 92% at all times. To ensure Williams saturations are above 92%, we use a Pulse Oximetry machine that monitors his heart rate and sats. Depending on Williams sats is the amount if oxygen delivered. Typically William is on a liter flow of 1.5LPM. We use liquid oxygen, but we also have an oxygen concentrator. The liquid tanks are heavy, and you can't be a wimp to manage liquid o2 tanks.

G-Tube with special diet
-William doesn't eat with his mouth, he's fed with a special tune placed into his tummy called a g-tube. William has an intolerance for some foods due to his kidney condition, mad is on a special high calorie liquid formula diet. Formal has to be carefully measured and mixed daily. The formula is fed to William several times per days to his g-tube and then William gets an overnight feeding delivered from a feeding pump. The pump has to be adjusted and monitored properly overnight to ensure William is being fed properly and isn't aspirating fluids. 

Meds
-William gets medication into his g-tube a few times daily.

Diapering
-William requires frequent diapering to keep his bum fresh and clean. No one wants a red tush. 

TLC
-William is the silliest, funniest, cutest little dude around and loves to play. Loves to cuddle. Loves to laugh. Loves entertainment. In addition to all the medical care, TLC is the number one task of the day.

Richie and I perform all these tasks like second nature, and are now so very used to the 24/7 care William needs. We do get a helping hand 4x a week from a pediatric home health nurse, which helps tremendously. Especially since we are raising our daughter who has special needs and requires a ton of 1:1 assistance. Outside of our home nurses help, we have a few family members who are comfortable enough caring for William- but we really don't get a break from the intense 24/7 care. 

However, we DO get small breaks of RESPITE when William goes to RYAN HOUSE!

Ryan House is an amazing non profit organization providing respite care to children with life threatening conditions in a home like setting. Staffed with the best you can find Nurses, CNA's, Child life Specialists, Social Workers, Chaplain, And Volunteers with the biggest hearts. And best of all, these amazing people LOVE our special kids way too much. 

The elite Ryan House team know how to manage all of Williams special health needs and equipment. Ryan House allows children like William 28 days of free respite per hear, up to 6 nights at a time throughout the year. This gives parents like Richie and I amazing opportunities for a short respite break. William has been staying at Ryan House since 2010 and we have completely enjoyed our short breaks of respite, knowing William was in the loving hands of the Staff at RH. 

Ryan House asks nothing from families when we bring our special children for respite. This amazing NON-Profit organization relies strictly on community support. 

Please join me in this opportunity to Support Ryan House while having fun doing so. Annually, Team William participates in FUNdraising for the Ryan House Run, and we always participate in the Run at DC Ranch in Scottsdale. Ryan House Run is a family event, and there's something for everyone to do. Choose from the 1 mile Fmily Fun Run, 5k, 10k, and Half Marathon. This year #r4rh is on Saturday March 1, 2014. Check out http://www.runforryanhouse.com for more detailed info on the race.

If your interested in donating to Team William, your donation will be a much needed Gift of Respite to a well deserving Arizona Family caring for a child with a life threatening illness. Follow the link to donate, or join Team William for race day!

 http://ryanhouse.kintera.org/faf/search/searchTeamPart.asp?ievent=1090744&team=5796600#sthash.fG2MYM2F.dpuf

Team William also is so Honored to be featured by The Turquoise Trunk Mobile Fashion Boutique on Wheels this February! With every sale of the Trendy "Hipssister" off The Turquoise Trunk, a portion of your purchase will be donated to Team William to support our beloved Ryan House!

Check out http://turquoisetrunk.com for the Fashion Boutique on Wheels daily schedule and get your "Hipssister". I just got mine and I love it!

Long awaited update!

It's been way too long since I've blogged an update! Since my last update in 2012, I've been the busiest I've ever been in my mom career! Between fighting an epic battle advocating for Isabell's special education and devoting 100% of my time enhancing William's health and development- I haven't set aside much time to write about our crazy, fun filled life!

Long story short regarding Isabell's special education... It is one hell of a job advocating for your child's special education when your special child's academic, social and emotional needs aren't being met appropriately. With changes in our district, and changes made- I had to step in back in the fall of 2012 and exercise my IEP rights as Isabell's parent. To current date, Isabell is attending a wonderful "A" rated school in our district! I adore her principal! I really love her teacher! and I am so excited that this school year has tired out to be great for Isabell. Her specialized educational needs are being met and then some. 

William. He is an absolute crazy guy! Growing, developing, progressing, learning, and just like his big sister Isabell, making me the luckiest mom ever. Although Williams cognitive abilities are profoundly delayed, he continues to amaze us daily with all the skills he's gaining. With intense home therapy weekly, home therapy follow up, and age appropriate "pre-school" activities like reading, singing, finger painting, and engaging with therapeutic ipad apps daily, and lots of TLC- Williams health and development is astoundingly progressing. 

Here's a little YouTube video of his latest trick- learning to play with the toy in the video took a lot of practice! 

https://www.youtube.com/watch?v=7Gk_Gz6TbiE&feature=youtube_gdata_player

Richie is still working on the Houston LiteRail. The kiddos and I packed up all of our medical equipment and supplies and flew to Houston again last summer (2013). We spent 2 months in the RV at the trailerhood- and we had a great summer with daddy! He is able to make it home about once a month to visit, so spending the summer together was so great. Together as a family for 2 straight months sure is fun. 

Team William is gearing up for Ryan House Run 2014!

What is Ryan House?

To us, Ryan House is a home away from home for our WildManWillie. 

Williams entire life has revolved around a qualified care taker caring for him. Richard Leon and I have evolved into quite the professional care takers and everything we do is to perfectly meet Williams medical needs. To manage Williams life threatening conditions, it takes 24 hour care. 

Managing the health care needs of a non ambulatory 4 year old with a Trach, Oxygen, and G-Tube with special diet is very important and not just anyone can manage these medical complexities- among other complex needs of profoundly disabled children.

To manage Williams health needs, we absolutely have to commit ourselves to the intense daily routine of:

Trach care
-the Trach site must always be clean, and is at an extreme high risk for infection. William gets a new sterile Trach placed into his airway every Monday and gets new Trach ties twice daily. 

Suctioning
-Williams Trach requires frequent suctioning of secretions. Hands must be clean, and a clean sterile suction caterer is used for suctioning of the Trach. This is something that is done randomly 24 hours a. Day as needed. William sometimes requires 10 suctions a day, and other days requires 100 suctions. It really just depends!

Oxygen
-William is on continuous oxygen, and we like his blood oxygen saturations to be above 92% at all times. To ensure Williams saturations are above 92%, we use a Pulse Oximetry machine that monitors his heart rate and sats. Depending on Williams sats is the amount if oxygen delivered. Typically William is on a liter flow of 1.5LPM. We use liquid oxygen, but we also have an oxygen concentrator. The liquid tanks are heavy, and you can't be a wimp to manage liquid o2 tanks.

G-Tube with special diet
-William doesn't eat with his mouth, he's fed with a special tune placed into his tummy called a g-tube. William has an intolerance for some foods due to his kidney condition, mad is on a special high calorie liquid formula diet. Formal has to be carefully measured and mixed daily. The formula is fed to William several times per days to his g-tube and then William gets an overnight feeding delivered from a feeding pump. The pump has to be adjusted and monitored properly overnight to ensure William is being fed properly and isn't aspirating fluids. 

Meds
-William gets medication into his g-tube a few times daily.

Diapering
-William requires frequent diapering to keep his bum fresh and clean. No one wants a red tush. 

TLC
-William is the silliest, funniest, cutest little dude around and loves to play. Loves to cuddle. Loves to laugh. Loves entertainment. In addition to all the medical care, TLC is the number one task of the day.

Richie and I perform all these tasks like second nature, and are now so very used to the 24/7 care William needs. We do get a helping hand 4x a week from a pediatric home health nurse, which helps tremendously. Especially since we are raising our daughter who has special needs and requires a ton of 1:1 assistance. Outside of our home nurses help, we have a few family members who are comfortable enough caring for William- but we really don't get a break from the intense 24/7 care. 

However, we DO get small breaks of RESPITE when William goes to RYAN HOUSE!

Ryan House is an amazing non profit organization providing respite care to children with life threatening conditions in a home like setting. Staffed with the best you can find Nurses, CNA's, Child life Specialists, Social Workers, Chaplain, And Volunteers with the biggest hearts. And best of all, these amazing people LOVE our special kids way too much. 

The elite Ryan House team know how to manage all of Williams special health needs and equipment. Ryan House allows children like William 28 days of free respite per hear, up to 6 nights at a time throughout the year. This gives parents like Richie and I amazing opportunities for a short respite break. William has been staying at Ryan House since 2010 and we have completely enjoyed our short breaks of respite, knowing William was in the loving hands of the Staff at RH. 

Ryan House asks nothing from families when we bring our special children for respite. This amazing NON-Profit organization relies strictly on community support. 

Please join me in this opportunity to Support Ryan House while having fun doing so. Annually, Team William participates in FUNdraising for the Ryan House run event. This year #r4rh is on March 1!

If your interested in donating to Team William, your donation will be a much needed Gift of Respite to a well deserving Arizona Family caring for a child with a life threatening illness. Follow the link to donate, or join Team William for race day!

- See more at: http://ryanhouse.kintera.org/faf/search/searchTeamPart.asp?ievent=1090744&team=5796600#sthash.t9OzLnY7.dpuf

I have also recently joined forces with Phoenix Children's NICU Family Advisory Council, and attended my first meeting. I am excited to also have the opportunity to attend February 2014 Main Family Advisory Council Meeting. I look foward to bring a positive parent voice to make the already amazing Phoenix Children's Hospital all that much better. 

Cheers!

My little clowns!

Never a Dull Moment

~Update Time~

Today is Isabell's 3rd week of 1st Grade! She is doing very great, and is just the best little student. As many of you Leon Family Fans know- Isabell has overall developmental delays, has vision loss, and mild/moderate hearing loss. She wears glasses to treat her slight near-sightedness and we patch her right eye daily for 1-2 hours. Her left eye is weak and out of focus- we place the patch over her strong eye to force her brain to use her weak left eye to strengthen it. So far, Isabell's weakened, out of focus left eye has gotten a little stronger thanks to the patch. (We do the patching at home, it is easiest that way) At school, Isabell is too delayed for mainstream 1st grade, and is in a specialized program called the PALS Program. Isabell is in the Kindergarten-1st grade PALS Class.

A little about Pals:
PALS Program: Pupils with Alternative Learning Styles"The PALS Program is designed for students who function considerably below their peers in intellectual ability and adaptive behaviors that adversely affects a child’s performance in a regular classroom setting. Instruction is significantly modified and based on the needs identified in the student’s IEP. The purpose of the program is to provide appropriate instruction to enable students to function as independently as possible throughout their school years and transition to adult life."

I got this definition from http://www.tempeschools.org/Parents.cfm?subpage=134

This school year has been great in my perspective thus far- 2 weeks in, starting our 3rd week. Isabell has a teacher this year who I have connected with and I like. She did tell me that Isabell was the easiest kiddo in her class! (These kiddos all have special needs, and are a HaNdFuLl!!!) Made me so proud of my sweet girl.


Now William. The Wild Man. He is doing so great, and I am so pleased with how well he is doing. We have lots going on with our Wild Man- but nothing too crazy. Last May William got sick and was admitted to PCH for 18 days. During that particular hospitalization, we found that William's body was having trouble with stress. His adrenal glands were suppressed and not responding to stress. The cause of this (For William) was the pro-longed use of Prednisone which is an oral lung steroid. William has had alot of trouble with respiratory distress and in early 2011 we were giving William multiple Lung Steroid Boosts which eventually suppressed his adrenals. In order to help William's body respond to stress, he was started on a couple of different steroids. Hydrocortisone, and Fludrocortisone. In the event that the adrenal glands are suppressed from prolonged usage of Prednisone, it is possible that once the adrenals have in a sense "rested" that the doses of Hydrocortisone and Fludrocortisone can be weened. In November 2011, we weened off of the Fludrocortisone, and had labs drawn to check electrolytes. Labs were normal. So William has remained on his twice daily regulated low dose of hydrocortisone. SInce he has been doing so great- we have been seeing Endocrinology frequently so our specialist can help us ween off the Hydrocortisone. On 7-26 we started weening the HC. On 8-2 we seen Endocrinology. On 8-16 we had labs drawn to check electrolytes. Labs were Normal! So we have continued to ween more and more of of the HC and tomorrow will be William's last dose. We will have labs drawn again next week and if all is well we are going to schedule a special procedure. This procedure is called a Stress Test on the Adrenals. This will determine if William's adrenals are truly suppressed.

We had a follow up with GI last week, and out Prince harming has lost weight. Not a ton, and he has grown a bit. So we increased the volume of formula he gets per day to add some more meat to his little bones!

Then today we seen an Audiologist for William for the first time. He failed his newborn BAER back in December 2009 at PCH NICU. After all of the health issues William has had, following up with audiology was at the bottom of our priority list- knowing that William would need to be sedated for a specialized hearing test. It has been too big of a risk in the past to sedate William just for a specialized hearing test. So again, since William is doing so well- I thought this would be a good time to connect with audiology. Today was that day, and our audiologist did a specialized mechanical hearing evaluation on William. Fail. He Failed. It appears that there is something blocking the eardrum, possibly fluid making the test inconclusive. Audiology recommends that we now go see our ENT specialist where ENT further investigates to determine if there is fluid on the eardrum. If there is fluid on William's eardrum, the next step from there is to get ear tubes placed and have the specialized hearing test done while he is sedated to determine if there is any hearing loss. If there is hearing loss determined, William would be a candidate for hearing aids or even a cochlear implant depending on which type of hearing loss he may have. Being that sister has Mild/Moderate hearing loss, I am hoping that William will be in that same range. I feel bummed that he isn't hearing properly, and probably never has heard properly. However, I am not surprised that he did not pass his hearing eval.

We are missing daddy, and counting down the days 'til he comes home. 11 more sleeps! He will be home for Labor Day weekend. Richie say's it's like being on vacation when he comes home- hanging with the kids in the backyard, swimming, grilling and having fun times. That's why we love it when he comes home.

Imaginary Bus Ride

It's quiet tonight.

Tonight, it's quiet. I was super sleepy and I was going to hit the sack- but I got a little burst of energy I guess which is making me think about the past two weeks. So much has happened in the last two weeks, and tonight is a very peaceful and quiet night.

Last time I blogged was the day that William had a head injury (7/26) from big sister 'helping' him get out of his high chair while I was in the shower. Our Wild Man has been doing great since the fall, you'd never know it happened!

On a sad note, on the very same day that William went to Phoenix Children's Emergency Department with the head injury, My Grandma Sara Jones was transported to the Payson Hospital Emergency Room with a swollen and very bruised leg.

As many know- My Grandma Jones had been facing some health challenges (aside from her little body being old and frail). She spent some time in the hospital in June, and was then spending some time in the Rehabilitation Unit in one of Payson's Care Homes. The goal at the Rehab Unit was to regain her strength she had lost during her hospitalization and surgery and learn to care for her newly placed colostomy and colostomy bag. She had good days, and bad days at the Rehab Unit. In late mid-late July she was having trouble with her leg. It seemed to be getting better, then all of a sudden was swollen and bruised. She wasn't complaining about her leg too much, and on July 26 family urged her to go to the Emergency Room to have the leg checked out. She was admitted to the hospital and a blood clot was discovered in her leg, as well as MRSA. On July 27, I called my Grandma on her cell phone around 9am. I wanted to assure her if they can get her MRSA under control, that there should be no need to worry about that. I also wanted to chat with her! I had gone up to the Care Home to visit her the Friday before (7/19) and I wanted to tell her that I wanted to come visit but since she was in the hospital I'd better wait and not come up with my kiddos. She agreed that we should stay home, especially since William had just fallen the day before! I chatted with her for a few, and she said "I love you Crystal, give those kids a kiss for me!" and I told her "Love you too Grandma, see you soon!"
On Saturday July 28 My Grandma was having a good day, and in the afternoon is when she became un-responsive. After being rushed to ICU it was determined that she had been bleeding internally from an unknown source. After all her kids (my mom, Aunt and Uncles) and Grandpa gathered around and said their goodbye's, she officially passed away in the early morning hours of Sunday July 29.

My mom, Aunt, Uncles and Grandpa did a super great job arranging the funeral and services for my Grandma which were held on Aug 3 in Payson. It was a special day remembering my sweet Grandma Sara Belle Holder Morris Jones. Although we were celebrating my Grandma and it was a sad day, it was so great to spend time with family and friends!

Later that night (Friday) Richie flew into town from Texas. I drove back from Payson to pick him up from the Airport. It was so nice having my husband home- the kiddos loved it. We had a good weekend.

Isabell started her first day of first grade today- and RIchie was super proud to see her off to school. He's usually out of town working for these occasions! We also had a new home nurse start today to help care for William. I really liked her today, and I am feeling pretty certain that she will be the good fit we are looking for. I like her attitude, she was great with William and she connected with the rest of us. She's here for William- but connecting with the rest of us is a must. This nurse that started today was super friendly and seemed to get along with all of us super good.

Early this afternoon, Richie had to fly back to Texas. He just got back to the RV a little it ago. It was a bummer to send him off, and it's almost a little too quite and too peaceful here tonight at home without my kids and husband doing what they do. Being loud, funny, pestering mom, cooking dinner- all the tings we love to do together. Missing that right about now, and he just left. :(

And today went a little something like this...

+

Today was one of the scariest days in my almost 7 year career of being a special needs mom. I'd have to say that I handled what this day threw at me like a pro.

I had the day all planned out today, I was going to accomplish some chores and get ready for William's PT to arrive for therapy. We also had an appointment with our favorite Pulmonologist (Dr. Kelvin Panasar) and we were super prepared for that and excited to see Dr. Panasar and his staff. I needed some RX refills for William, and to touch base with him regarding all Wild Man's superhero like progress he has been making in the past several months.  

William didn't have PT until 11am so therefore we had no rush this morning. William woke up around 5am, but I continued to snooze until 7 am and Isabell woke up around 7:30am. I made her breakfast and we played for a bit. At 9am I put William in his High Chair and buckled him in. He loves to sit in his high chair- I think he really feels like a big boy in it. Anyhow- I always put him in his beloved highchair when I am doing things around the house. Like taking a shower. Sounds pretty simple, right? I had Isabell fed, and entertained. She was sitting on the couch playing with her Tab. William was securely buckled in his favorite spot- so I told Isabell that I was going to take a shower (like I always do) and off I went. Within 3-4 minutes into my shower Isabell came into the bathroom and was playing in there. I thought that was odd, so I asked her what she was doing. She said she was playing and Bubba fell. I asked her "Fell on the floor? Is he on the ground?" and Isabell said "Yeah" like it was nothing. I bolted out of the shower and ran into the living room where I found the High Chair EMPTY- buckles unbuckled- and William was face down on the hard floor. I swooped him up and took him to my room to try and sooth him, and make sure he was ok. He was crying so hard, harder that I have ever seen him cry. William is always a happy camper, so when he cries something is really wrong. And with his trach- not much sound comes out when talking or crying. He was crying so hard that I could hear his intense cry through his trach. Which is not normal for William. I knew he was injured. I laid him on my bed to check him out. He wasn't bleeding. His head felt shaped differently than normal. William still has a very fragile head from his health condition. He still has a large soft spot that will most likely never close, along with his brain atrophy which means his head and brain are so very fragile. I kept feeling his skull and it felt weird to me. I knew I was anxious, and in the heat of an intense moment and I didn't want to over-react. I hooked William up to our pulse oximeter which monitors his heart rate and oxygen levels. William's normal heart rate while awake is 100bpm-125bpm. and when asleep his normal heart rate is  89bpm-95bpm. So this means the lowest I have ever seen his heart rate was 89bpm. When I powered on the pulse oximeter Williams heart rate was 77bpm and dropped to 63bpm. I had William on his daily required flow of oxygen which was 0.75lpm. Very low flow. The pulse oximeter was reading that William's oxygen saturation's were  92% and after a moment his saturation's dropped to 59%. My home liquid oxygen tank goes up to Max flow of 6 lpm. Since William's saturation's were dropping so much- I blasted him with oxygen by cranking my tank to 6 lpm. His saturation's jumped up to 100%. Good. Now the low heart rate was freaking me out. He was closing his eyes, and becoming limp. Then he would jolt and cry and wiggle his arms etc and his heart rate was going up from the 70's to the 90's. Up and down. So I knew I needed to keep him awake, I really felt like he was trying to loose consciousness. Meanwhile, I had to dart out of the shower in which I had not even completed to address this issue. After spending 10 minutes or so evaluating William, I called my mom because I knew I needed help with Isabell and I needed to get William to Phoenix Children's Hospital. My mom got here in no time, and I was afraid to drive to PCH myself, so I called 911. Paramedics were here in no time. They quickly came into my bedroom where William was and hooked him up to their monitors- asked questions and told me they can transport  William to Cardon's Children's Hospital or County. I don't have anything against Carson's, but I let the paramedics know that William has never been to Cardon's. I explained that he obviously has intense medical issues, and he has had 23 hospitalizations and 14 surgical procedures at PCH and that I felt that we had enough time and I recommended to drive a few extra miles and transport us to PCH. They all agreed. I said we will not go to County! We got to PCH about 10:30am. We went right into Emergency Dept room 6. The resident doc came right in within no time, and said a CT scan was wise. He rushed over to his computer- and put in an order for a CT scan with Radiology. Our ED Nurse Tiffany got us packaged up and down the long hallway of doom we went to radiology. (I call it hallways of doom because we had to rush down that long hallway last year when William was in Full Respiratory Failure trying to get to the PICU as fast as we could- NOT FUN!) CT scan was done is about 3 minutes! And back to the ED we went. Within 30 minutes, the resident doc came back in to talk to us. The CT scan showed that William does have a Non Displaced Skull Fracture on the back of his head. He said his brain looks good, and the rest of the skull looks good. No swelling. William is in pain, but we have been advised to treat with Tylenol, and he should be fine. We do have a follow up plan with Neurosurgery to make sure the skull fracture heals up properly.

In case you all are wondering- I had to get dressed in a flash when the ambulance was coming. My hair was dripping wet and in tangles. I threw it up in a matted pony tail and threw on some clothes as fast as I could. I knew the paramedics would arrive and want to load William up and Go. Of course I wanted to go with him in the ambulance. So, I am feeling like a Super Trooper today. With everything is disarray, and me getting transported to PCH in the middle of my lax morning routine I'd have to say I am pretty exhausted.

My mom had to call Richie to tell him what happened since I was taking care of my boy. Richie had a panic attack because he is 1300 miles away from home- and was scared for our little fighter. I was super scared as well. He was ready to leave work and fly home immediately. We decided for him to stay at work until I got to PCH and seen what the 'damage' was. After the resident doc said kiddos with fractures like William;s are ok to discharge and go home- I called Richie and told him not to worry and he didn't need to come home. William was ok. He is still sitting over there in Texas worrying about us though, and that is hard. We are not loving being apart right now, but we know we will get through this and be ok. He's the best dad, and I hate that he's away especially when my kids are sick, injured or not doing well.

Thanks to our Army of Helpers who jumped ship and offered to help us today. Isabell went with her Nana and my mom helped me get William home. We had lots of well wishes from Friends and Family and we appreciate that so much. We are doing great tonight, and William is doing fine. He is in pain, and I have been giving him Tylenol every 4 hours. He tries to be happy and social, then he remembers that he has a head injury and cries his sweet innocent little helpless cry. It's heartbreaking.

Isabell was upset with herself after the incident, and cried and cried. I didn't freak out at her, I remained calm- but after I started evaluating William and things got intense I could tell she realized bubba was hurt. And she did not like that. She loves her bubba so much, and tries to be such a helper. She is still learning her boundaries, and also being a stubborn big sister. This afternoon she was so sweet and loving to her bubba because he has a BooBoo on his head with no blood. She is obsessed with blood- so she keeps asking me if there was blood. No, there was no blood.

Off to bed I go, Hi-Ho, Hi-Ho. Zzzzzzz.