Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!



Friday, March 30, 2012

Cold. Refreshing. Lemonade!!!



What a fun way to spend a perfect Spring Day- Drinking Lemonade and donating to a great cause!


Join in on the fun with Team William Saturday April 21st, 2012 from 10-am-2pm!

I am hoping to have multiple stands around town, so let me know if you are interested in hosting a stand!

Thursday, March 29, 2012

Missing you...

I'll be missing you tonight. I'll be dreaming of you.... Tonight.

1800 miles apart is too far. Anything out of my arms reach is too far, and I'm wanting to snuggle with you tonight.

Think Lemonade!

Cold. Refreshing. Lemonade.

Wednesday, March 28, 2012

Thanking my lucky stars

I love these little cuties. They are my everything. They are the reason I smile. Love them so much, I can't stand it!

I need...

COFFEE... and would love a monkey face atop!

Tuesday, March 27, 2012

Talking a walk down memory lane...

Today would be a perfect day.....



To enjoy an outing to Lake Rosie.




Instead I am stuck here in Phoenix, needing to get a non-functioning, At risk for infection,  Broviac removed from my sons body. So frustrating that we are dealing with this!!

 Each time I close my eyes, I drift off into dream mode wishing I was enjoying a day at my favorite Lake today. I used to tell my friends at school that I owned Roosevelt Lake, because my dad always told me it was his lake- so therefore I thought it belonged to us! I have so many memories at Lake Rosie Posie. We used to spend Easter at the lake when we were kiddos, in fact I used to go fishing with my dad when I was still in a car seat- snow, rain or shine! I was his best Bass Fishing partner, winning several tournaments right here at My Lake Rosie.

Just took a walk down memory lane... 



Monday, March 26, 2012

Happy Monday!

Hey Leon Family fans... wanted to write a quick update. I'm pretty tired, but thought I'd share a few things! We survived our busy week last week- it was exhausting. I'll break it down...
  • Monday March 19th, when we met with my kiddos PCP to talk regarding William's non-flushing most likely clotted Broviac central line catheter. We also talked about a few pros/cons of port placement. He agreed we needed to get the non-functioning Broviac out- and that it had to be surgically removed to to just consult with surgery. So, luckily I had the appointment set up for early the next morning. THEN as luck would have it, after a great day, William got a fever in the evening of 103. The fever led us right to PCH ED. at bout 8pm I called my mom and told her I needed help with Isabell, and she dropped everything and came right on down to my house to stay with Isabell. I often wonder what I'd do without my MOM! Anyhow, William and I arrived to PCH ED around 9pm. I was so nervous and scared that the fever was due to a infection from the non functioning Broviac catheter. After labs were drawn, we identified that there was no blood infection and we actually discharged to go home- at 2am!! Long night, and our appointment with our surgeon was at 7:45 the next morning. We got home about 2:30-3am, slept until 6am, and left the house at 7am to get to our appointment at 7:45am.
  • Tuesday March 20- appointment with surgery. Our surgeon expressed that the current broviac needed removed and that a port placement is an option, nut automatically an increased risk of infection for William because he has a trach and the port will be up near the trach. He didn't jump to make a plan to remove the broviac which needs to be surgically removed- he ordered an ultrasound of William's veins to make a plan for port placement. I was somewhat frustrated, because at that point I just wanted the Broviac removed!
  • Thursday March 22- Our clinic visit with our endocrinologist went well, even though William had to get blood drawn and we were unable to use the darn Broviac, so William had to get poked. He did surprisingly well, and actually giggled through his 'poke'.
As of today, we still have no plan of removing Williams non functioning, at risk for infection, and clotting Broviac. I ended up calling our PCP, and surgeon asking, begging, pleading, and reasoning with them to make a PLAN for removal! It's been over 2 weeks since the broviac has been flushed, and is doing nothing at this point but waiting for a clot, infection or worse. By tomorrow I should hear of a plan.... SHOULD is the key word.

This is very frustrating, and I have gotten very frustrated with my medical team whom I very much trust. I have had to be very persistent on this matter, and I feel like I have done so much already to try and make this "Plan of Removal" happen. I had to go into panic, melt sown, hissy fit mode today to get everyone to Listen To Me!!!

Wish me luck for tomorrow, if a plan isn't made, I am going to blow my top!

Saturday, March 17, 2012

Spring Break flew by...

Spring break has pretty much come and gone for my Isabell and we will be back to our normal schedule starting Monday. She missed school the whole week two weeks ago since she was sick, and the past week of her actual spring break went by fast. We did not do much, but staying home was nice. She is still suffering from her allergies attacking her with severe cases of sneezing, itching, coughing, slight breathing restriction, runny eyes, bloody nose issues but she is such a trooper. I treat her with an AM dose of Clairiton, a PM dose of Dimetap cold &allergy if her cough is bad, 2 puffs of Albuterol as needed (helps cough too), a Flintstone multi vitamin, and keep the cool mist humidifier running. Along with her allergy attacks, Isabell had alot of "I Miss Daddy" moments that crushed me! She just truly and honestly loves and misses her daddy so much. We are super excited that Daddy is coming home for Easter weekend. If all goes as planned, Richie has gotten word from his superintendent with the company he works for (Mass Electric) that there is some repairs to be done to the LightRail here in Phoenix. The superintendent assigned Richie to the repairs. Richie will continue working in Houston during the week, and Mass is going to be flying Richie out here to Phoenix each weekend to work and do LighRail repairs. I am not sure how many weekends it will take Richie and his superintendent to do the Phoenix LightRail repairs BUT this means Richie would be hone on the weekends for a while on the companies dollar! This would be so great for the kids and I, we miss daddy tons.

William is doing great, despite the his Broviac Central Line setback that we are at a standstill with. We have a few appointments this week to make a plan to remove this central line and replace or place something different. Here's the weeks rundown...

  • Monday 3/19- Back to our regular routine for Isaebell, up early, hair done, school uniform on, breakfast eaten, and lunchbox packed. She catches the bus (at our front door) around 8:20am. I have a million phone calls to make as soon as Isabell leaves. William has an appointment with our PCP Dr. Berger at 11:30am. We need an order for this central line to be removed while WIlliam is under sedation. Interventional Radiology Department at PCH can do this procedure with a physician's order, and we are still hanging around waiting for a plan to be made. The broviac broke/wouldn't flush on 3/13 and I was discharged from our 8 hour ED visit with a plan that my physicians could devise a plan for me. It isn't that easy to make plan over the phone, so I made appointments to meet with our PCP and Pediatric Surgeon to discuss other central line options such as a Port. Due to our PCP appointment, we have to cancel WIlliam's Foundation for Blind therapy session that is at 11am :(   Isabell gets dropped off from the bus around 4pm. William's nurse TIffani will be here from 7am-5pm. I hopefully will also be hearing on the completion info of William's stroller/wheelchair called a KidKart Express.
  • Tuesday 3/20 We have our appointment with pediatric surgeon Dr.Egan (Who I LOVE) at 7:45am. This means I need to make arrangements for someone to come to my house early Tuesday am to get Isabell ready for school, pack her beloved lunchbox and send her off on the bus. Most likely Me-Maw will be designated for that task, I don't know what I'd do without my mom most of the time! She's always a lifesaver. Since we have this early am appointment we have to cancel William's PT session that is at 9am :( And Nurse Tiffani will be off for the rest of the week.
  • Wednesday 3/21 Pending the Broviac removal plans, we have Speech therapy at 11am, and Occupational therapy at 12:45 for William.
  • Thursday 3/22 Also pending Broviac removal, we have clinic with our Endocrinologist who is managing William's adrenal malfunction and steroid therapy at 9am in Mesa and Physical therapy at 12noon for William here at home (all therapies are at home)
  • Friday 3/23 No appointments yet!
  • Weekend- No plans yet, most likely spending time with family.
Oh something that is just plain funny. It happened a little while back, but one day I was playing my Ipod and jammin out with William just him and I here at home. I had it on shuffle and the explicit version of this rap song called "Back that Azz Up" came on. As soon as the loud beat started William was bouncing with the beat so wildly and crazily with a huge smile on his face. He was in his high char and the music was really loud. I was dancing around him and holding his arms swinging them, and he was having a total laughing dancing freakout. I couldn't stop laughing that entire day- my 2 year old's favorite song is Back that Azz Up. He loves singing and dancing, most of the time to kid songs- but he really jazzes up when Back that Azz up comes on. I just love my silly little boy.

William has also been having 2-3 desaturation episodes overnight when hes sleeping, and when I'm sleeping. I keep William on a pecial monitor at night that does a special job called Pulse Oximetry. My pulse oximeterdesaturation episodes 2-3 times a night where the machine detects his blood oxygen levels as low as 42%. There are 5 steps to follow when this the alarm sounds and I wake up out of a super great dead sleep dreaming of some tropical island. As I am sitting on the warm sand listening to the ocean waves drinking my fruity drink with a little umbrella in it in my dreams (and other great dreams alike) I hear this faint beeping. After half a second I am immediately alert and awakened.
  1. Turn light on first! (I have one of those 'Push It" lights in William;s crib. I push on the light, and I have light)
  2. Look At William. Mentally note any color change, chest rising and breathing, and anything else that comes to mind during this half asleep moment.
  3. Look at the pulse oximeter's numbers (kindof doing all this at once, BUT I always look at William first. Sometimes the machine gives a false alarm.
  4. Suction Airway - I fire the suction machine up and wake up the neighborhood. (The suction machine is so loud, its like starting up a diesel truck right nest to your face in the middle of the quiet night while your fast asleep) That bad boy isn't that loud, but in the middle of the quiet night its LOUD!
  5. Adjust Oxygen flow/ Give breaths to William with a special apparatus called an Ambu Bag until his blood oxygen saturation's are back to normal and we are re-stabilized.
I do number 1... If machine doesn't stop beeping and he's not fine I move on to number 2. Which I already do anyway, really. And if he's still not good, I move on to no 3. And if he is still not fine I move on to number 4. And if he;s still not doing good or if his blood oxygen saturation's aren't improving I move on to number 5. I have been needing to do all 5 steps 2-3 times per night for 2 weeks now. After reaching step 5 William's blood oxygen levels return back to 100% close to  his baseline oxygen flow William's pulmonologist is awareand we had a chest x-ray to check for any fluid on his lungs. Otherwise I need to just keep doing what I am doing- and try to closely monitor these episodes while I am half asleep 2-3 times a night. I haven't been a huge whining brat about the lack of sleep I've gotten, but I'm getting tired! I'd like to say that I'm getting used to it 2 weeks later, but William has never done this sort of thing before and it's been quite tiring, and scary. I don't freak out when it happens, and I handle it calmly. I have all the things I need organized at William's bedside in the event of any emergency, and that is all I can do. Be organized and prepared.

Bedside Tools:
  1. Gauze
  2. Scissors
  3. trach ties
  4. Trach tubes Pediatric Cuffless sizes 3.5cm and 3.0cm
  5. Q-Tips
  6. Saline bullets
  7. Plethora of Suction Catheters size 8FR
  8. Oxygen
  9. Ambu-bag
  10. Pulse Oximeter
  11. Suction Machine
  12. Diapers
  13. Wipes
  14. Feeding pump (running 24/7)
  15. Sleeping mommie crossing her fingers and toes that all remains stable throughout the night
I'd really do anything for My William. To hold him, see his contagious smile, and see his happiness fill the room daily makes my day over and over again. I am lucky to be Isabell and William's mom. They are the most amazing kids ever, and they make Richie and I very proud and make us feel so lucky to have such awesome kids.

Goodnight all...

Wednesday, March 14, 2012

My B-Bell

Tonight I am up late, rubbing my Isabell's back as she's having a huge allergy attack that has her coughing, itching, sneezing, tossing, and turning since 8:45 pm. I just love her so much that it hurts! B-Bell is one amazing little girl... Take a look at all these pictures. Each one captures all the greatness of my amazing little B-Bell!

Tuesday, March 13, 2012

All I wanted to do today was go for a walk with my kiddos!

Late yesterday afternoon, William's central line IV, AKA his Broviac would not flush. William's Broviac is a central line IV catheter that is tunneled into his body into a large artery near his heart. William has a broviac because he is a chronically ill kiddo that sometimes needs meds and fluids via IV. Since William has very little, weak and frail veins the typical IV doesn't do the trick, leaving him with several painful infiltrations. The Broviac was placed in June 2011 and has a long-term purpose- meaning that we were able to bring William home from the hospital with this special Broviac central line. We had alot to learn about the broviac. It is a HUGE, I mean HUGE risk for infection. This IV catheter is tunneled near his heart, and if any bacteria gets into the catheter and then into his blood he could suffer from a line infection which can sometimes be fatal. In order to keep the line free from germs, we have to change the sterile protective medical dressing over the area of the catheter that hangs outside of William's body. We have to change the dressing under somewhat sterile conditions. Obviously his crib or blanket that he is laying on for the dressing change isn't sterile, but I have  dressing change kits with a slew of items to be as clean, neat, and sterile as possible for the dressing change. A sterile field to lay down in the area to allow a sterile field for the sterile dressing change, a surgical mask to protect my germs from breathing on the area, sterile gloves, sterile gauze, skin protectant, and chloraseptic cleansing swabs to sterilize and clean the skin and catheter. Among a few other things. The end of the catheter has a changeable cap that has to be changed weekly as well. To change the cap, we have to rub an alcohol swab around the tip for 30 seconds to sterilize the area for the new sterile cap. And then daily, if nothing is going through the line, I just flush the line with 5mL of a solution called heprin. Heprin loosens up the blood and keeps it from clotting the line, but even with proper flushing of the line, it could still get clogged. To flush the line, I open a sterile pre-measured syringe of heprin, wear sterile gloves, rub an alcohol swab on the tip of the cap for 30 seconds, let that dry then twist on the sterile heprin syringe and administer.

So- very unfortunately my little man's broviac wouldn't flush last night, and it had an area at the end that was loose and didn'tlook right. I had been instructed by my medical team that if I ever experience problems with the broviac to go to our Phoenix Children's Hospital Emergency Department and that a special team called IV team would come evaluate it. (PCH IV Team is AWESOME!!) This morning we had a scheduled and much needed appointment with our pulmonologist Dr. Panasar in Gilbert. That appointment went well. The plan after that was to go to the PCH ED, get the broviac figured out and come home to talk a walk in this awesome weather with my sweet kiddos. I dropped off Isaebll to my mom at the hall thinking that I'd be back somewhat shortly to go home. Those plans were crushed with an 8 hour ED visit that lasted from 12Noon to 8pm. When we arrived to the ED, it was not busy at all. (I know what a busy PCH ED looks like) A nurse that was not our assigned nurse came into the room and said she works with broviacs all the time (but was not IV team) and that she needed to put a special med into the line to try and dissolve any blood clots. My nurse Tiffani pointed out the weird loose spot of the broviac and the nurse said if it breaks than IV team can fix it because she was really trying to force the dissolving solution into the line. After Nurse know it all (she had a very Miss know it all attitude) was confident that she got the dissolving solution into the line (which Tiffani was confident that the solution did not go into the line properly) the solution had to sit in the line for 2 hours. So 2 hours came and went and the line still wouldn't flush. So by that point I was demanding for IV team STAT. When IV teams Michelle (Love her) came in she immediately noticed the broken weird looking end piece. She said it was not good because it appeared to be broken and could be a gateway for bacteria and she would recommend putting any solution into the line in case it has bacteria in the broken area. Meanwhile Nurse know it all was really trying to shove the solution through the line with alot of pressure. They should have just called in IV team to begin with (Like I asked them to) to take a look at it. After the discovery of the broken piece, we decided to have the broviac removed. Then there was a hiccup in our plan, because William has had his broviac


Broken end of the broviac that IV Team's Michelle cut off for a temporary repair.

Monday, March 12, 2012

Spring Break 2012 days 1, 2, & 3!

The weather has been perfect outside the past few days, and we have enjoyed the first few days of Isabell's Spring Break. Isabell was home from school all last week because she was sick. She has had this gagging cough for so long now. But today was day 3 of Spring Break.

On Saturday 3/10 the kids and I stayed at home most of the day. I did some things around the house and I let Isabell ride her pink car around the driveway for a few hours. A little girl from down the street rode her bike by our house and stopped and wanted to play. I wasn't sure I wanted her to play without her parents around... I didn't even know this little girl! She was a cutie, and I'm sure Isabell would have fun- but who are you are where are your parents!? A guy whom I have never met came over and asked if she was ok over here and he exclaimed that she was his friends kid and they were working on his car. He said if she, Mackenzie was her name, is any trouble to send her down. Um- dude, did I agree to watching your friends kid? So I told him that I was doing some things around the house and that I couldn't watch over her, and I couldn't have her coming inside but I didn't mind her playing in our driveway. So he scampered away. Then Mackenzie kept jumping in Isabell's pink car and it rammed into my house, then again into the recycle trash bin and I kept nicely telling her she couldn't drive the car. My reasoning was because I did not know her, her parents were not around, she could get hurt and she didn't know how to drive it! I wouldn't mind teaching her, but if she got hurt her parents are not around, and I am not taking on that responsibility. So I put the pink car in the garage, and brought out Isabell' bike and Razer Scooter. And I got them a drink of water and a bag of goldfish crackers. They giggled and played- yet Mackenzie was a little bossy and when I was outside with them Mackenzie asked me "What is your deal?" I was shocked that a 5 year old asked me that! What a sassy pants! So then ran and got in the pink car again and drove right into my Tahoe. I was frustrated at that point that this little girl I didn't even know was not listening to me! I ran in front of the pink car and made her stop, and get our promptly. I looked up and another guy was walking towards us. He was giving me a dirty look, and Mackenzie called him "daddy" So I laid into him! I told him that his daughter was told to stay out of the pink car, and she didn't follow directions and now she has smashed into the house, trash can, and then my car. I told him I didn't want her to get hurt while her parents were not around. He didn't say anything but "Sorry" and made Mackenzie go. I would never let Isabell just go off and play with somebody I don't know! But anyhow- William, Isabell and I went out to Macs Broiler and Tap for dinner. Then came home and watched a movie.

On Sunday 3/11 was my step dad, Tom's birthday. The kids and I went up to my mom and Tom's house in N. Scottsdale to enjoy the day. My mom had a veggie tray, hummus and crackers, she made a pot of beans, and they did some yummy ribs on the grill. Some of their friends came over and we all ate some good food. After the food we had some red-velvet birthday cake. My mom got a migraine headache and wasn't feeling great around the time of cake and was laying down. After we had cake, the kids and I loaded up and were headed back home to Tempe by 5pm. When we got home we went on a small walk- I held William in my Baby B'Jorn carrier and Isabell drove her pink car until it went dead at the end of the street and I had to pull it back home! After that, we came in and the kids got cleaned up and ready for bed!

Today, William's nurse Tiffani got her at 7am. After she got here, Isabell and I got ready and took Corbin the dog to South Mountain for a hiking adventure. The adventure was more like Torture Session for me- nut I am glad I went. Isabell was quite the complainer, and right at the start of the not so intense hike she was begging to go home- or go to the car- or go potty- or that she was hot- anything she could think of. She also insisted on holding my hand the whole time, while the dog kept tangling through our feet. What a circus, I am sure the other hikers were enjoying the comedy act. When we got home, William's Foundation for Blind Children Therapist was here and William was very much enjoying his vision therapy session with Miss Amy from FBC. She is so sweet. William loves her alot. Amy sings to William, sometimes brings her guitar and he really loves the sounds and vibrations of that, and Amy also always has the coolest light up toys. William's favorite things are cool light up toys. I am so glad we get services from FBC. After Amy left we just hung around the house all afternoon while Isabell got in another couple hours of Pink Car driving in. Tiffani left at 5pm, and after that Isabell and I went out in the backyard and sprayed off the back patio porches. They were so dirty! It is so clean out there now, and I am wanting to plant some plants and flowers. I didn't get with the program and plant anything in my garden so it is looking sad out there. My Plum tree and Apricot trees are flowering and getting leaves and my chili plants are thriving good as ever. But that is all I have- a couple trees and a couple chili plants. Boring! After it turned dusk outside, we came in and got cleaned up and put our jammies on. I read Isabell half of The Cat in the Hat and she passed out. William has been asleep for several hours now- I hope he's not up all night. Wish me luck!

We are missing daddy, but we have talked to him every night. Isabell has her sad moments where she misses her daddy and it breaks my heart. I hate that Richie has to work so far away from us, but we are all doing ok. We look forward to daddy taking a few days off work and coming home soon. We love him tons! Richard Leon- you are the Best Husband and Father EvEr! :) Bear Hugs from me and the kids! :)




Photos of our week so far...



Thursday, March 8, 2012

I can't believe it's March! :)

How nice March 2012 has been for us!
  • On Friday March 2, 2012 Richie flew home late so he could join us for the Ryan House Run. William was still in the hospital with a plan of discharging on Saturday the 3rd. We had a very busy weekend ahead of us! We got up early Saturday morning.
  • Saturday March 3, 2012 was a Big day. We got up early and went to the Ryan House Run. We had alot of participants that joined in on the fun with Team William for the Ryan House Run. William;s Physical Therapist Denise Labriola ran the Half Marathon (and got a special medal), and William's previous physical therapist asst. Ashley Millikan ran the 5K, along with a family friend Jerry Baker who ran the 5K- and he finished first in his class and got a special medal! Team William started our fundraising campaign in late January 2012, and we ended up fundraising over $$$7,500 for our beloved Ryan House. We were the top fundraising team for the second year in a row! If you aren't familiar with our beloved Ryan House visit www.ryanhouse.org for more info! If you ever have a few bucks to spare, Ryan House is an amazing organization to give to. After the Run, Team William met up at my moms house for lunch and drinks. After we ate lunch and visited with our company, Richie and I went to PCH to get our Prince William! William was still needing alot of oxygen support, and we had planned on just discharging and going home on a much higher flow of oxygen than normal. He is normally on a flow on 0.25-0.5LPM and he was needing around 3.5-4LPM. That is alot more oxygen support then normal, but after his 16 day hospitalization and illness it may take him alot of time to get all the way better and may take some time to ween his oxygen support. When we got there, one of our doctors came in and told me that they did a chest x-ray on William and it looked like he had a pleural effusion on his left lung.This means there appeared to big a big fluid ring around his left lung, and big fluid rings are not good as they can cause a pneumonia or worse. Sometimes a pleural effusion has to be drained with a chest tube that is placed through the chest and into the lung to release the fluid. And another concern that arose during that chest x-ray is that it appeared that William's broviac catheter had moved slightly and it appeared that the catheter was in William's heart tissue. This is not good because the catheter can and could start eroding away the heart tissue. So a couple of things we needed to do to re-assure that there was not a pleural effusion and to ensure that the broviac catheter hadn't moved. So to check out the pleural effusion with better technology, we called for an ultrasound of the lung. An ultrasounds images are more advanced that an X-Rays image. The ultrasound can measure the fluid, and get some better information about the fluid ring. After the ultrasound tech came and did the ultrasound, the radiologist read the ultrasound and explained that the pleural effusion was not that bad- and that he should be fine to go home with some breathing treatments and CPT Q4 while awake. The radiologist took a peek at the images of the possibly shifted broviac catheter and said that the catheters position was fine. So with all our bases covered, we were given the go ahead to discharge! We discharged on 3.5LPM of oxygen, and I was comfortable with that and I had a feeling he would gradually over time need less oxygen when we got home. So we bailed our Prince William out of that place, and brought his cute little butt HOME! Isabell was so excited, and we had a great Saturday afternoon together. Bye late Saturday evening I had William on 1LPM of oxygen, and his blood oxygen saturation's were a perfect 100%. He just needed to be HOME! What a great day Saturday was.
  • Sunday March 4, 2012. We had to get up early and take Richie back to the airport so he could return back to work in Houston, Texas. We were not ready for dad to leave! Then on Sunday afternoon my friend Jena and her husband Dirk and their little boy Harper came over and made us dinner. We had a nice afternoon, Dirk used our smoker to smoke his own homemade cured bacon! I gave Dirk a bunch of jalapenos and chili's from our chili plants and he's going to make jalapeno jam out of them! If he hasn't already!
  • Monday March 5, 2012. William's home nurse, Tiffani was able to come care for William. William was so happy and had such a great day. Isabell went to school, and had a fun day she said. Although, her teacher sent home a note in her communication report that Isabell wasn't following directions that great in class! This was the first report home of such nature in Isabell's school career! Later Monday night in the middle of the night, Isabell woke up sick with a cough and gagging vomiting. I was up with her for awhile, and had to change the bedding! William slept through all that, luckily! William's oxygen needs had improved even more and I had him on a flow of 0.25-0.75LPM which is his usual baseline. I am so happy that William is feeling so well! He was so miserable when he was in the hospital. I hated seeing him so miserable. He is back to his happy, giddy, sparkly, amazing self.
  • Tuesday March 6, 2012. I kept Isabell home from school since she's getting sick again! We had a great day- we just stayed home in our jammies all day!
  • Wednesday March 7, 2012. I kept Isabell home again, she has a gagging cough. Her ears are clear, I was worried about an ear infection. She hasn't had a fever, I just hate that shes not feeling great, and I don't want her to miss out on alot of school.
  • Today- William had his first outing since he got out of the hospital, Tiffani Isabell and I went to eat lunch at Fuddruckers. We had flyer- 20% of our bill went to an organization called "Branden needs a kidney transplant". Branden is a resident of Phoenix, AZ and he is currently needing a kidney transplant. Follow his story on Facebook- Branden needs a kidney transplant.
I am missing my husband, but I am also glad that he has such a great job. I couldn't be a luckier mommie, and wife. My wish is just that we could all be together everyday!