I have just a quick update from my post yesterday.
I called this morning and spoke with the NP at LPCH today and we chatted for a bit. I just requested that she speak with Dr Rosenthal and decide whether the liver ultrasound and CT scan (cardiac mapping) were definitely necessary, and if so, could they be done locally. I know they need the data prior to making an education decision to determine transplant eligibility, so if the tests need done I have no issue getting them done.
She totally understood my side of things and spoke with Dr Rosenthal for me. She called back a bit ago and said it's fine to have the liver ultrasound, CT scan and the rest of the labs done at PCH. They have very specific data they want when these tests are performed and is writing a long letter to Dr Stock to ensure it gets done correctly. The last thing I want is to subject him to radiation to get the wrong data.
I emailed Dr Stock to give him a heads up of what's going on. I know he'll take care of the cardiac CT scan and I hope to get that done next week. I know that they do not intubate at LPCH during a cardiac CT, but rather just do a sedation process, so I will ensure that is the case at PCH. To say I'm nervous about having any procedure done here is an understatement. The liver ultrasound will be a walk in the park, but it's more of a GI issue, so I am waiting to find out if Dr M (GI) needs to be the one to order that. Then we have the issue of labs. I have a LPCH lab slip, but it needs to be rewritten so I can get labs locally and have them sent to the correct person.
Whew.
It looks like we have a busy couple weeks ahead of us! Kam has dance recital this week, including dress rehearsals all day Friday. It's going to be fun, but busy. She is in all three recitals and has several costume changes and performances at each. I'm so glad we dropped ballet, that's one less stress.
I should get Owen's antibody results next week and I'm excited to hear the number. PRA (panel reactive antibodies) are a huge issue when talking transplant because the higher the number of antibody sensitization, the harder it is to find a heart. In 2008, when he was first tested, his PRA's were at 98. So 2% of the donor hearts available would work. In 2009, he dropped to 95%. In 2010, he dropped to 88%. In 2011, he dropped to 75%. So as of July 2011, he could have accepted a heart from 25% of the donor pool. Donor pool means children, no more than double his size, with the same blood type.. 25% of those donors. It's all a little scary and stressful, but I am trying to just take things as they come.
Starting with Liver ultrasounds, labs and cardiac CT scans. Hopefully all will be fine and he will be a candidate for transplant. I won't go into the ten minute conversation we had about what happens if he is NOT a candidate for transplant. I heard palliative care and zoned out, because I just wouldn't be able to accept that as an option!
Wednesday, May 30, 2012
Tuesday, May 29, 2012
Transplant Evaluations
We had a whirlwind of a trip and are currently at the airport waiting for our plane back to AZ. Our plane was delayed a few hours out of Phoenix, so we arrived in Palo Alto around dinnertime. Owen was hilarious on the plane.. as we were landing he said.. "My tummy tickles!" I said mine does too and he put his hand on my stomach and said "I want to feel it!" Then as we were leaving the rental car garage in San Jose, Carson and I were trying to decide which route to take to Palo Alto. He wanted to go the 280, I wanted to take the 101. Owen says "Mom is right!" To which Daddy replied.."You don't know nothin'!" (jokingly). Owen says "YES I DO.. I know about airplanes, and monsters, and Superheros!"
Uncle Rustyn came down from San Fran to see us and also to surprise Owen with the Incredible Hulk toy! He was so excited he kept saying.. "I just love my Hulk so much!"
We ran to dinner at Max's and Owen was ready to head back to the hotel after about 20 minutes. When I asked him if he was tired, he replied with.. "it's not even dark yet! I just want to play with my Hulk!" And he did. The Hulk defeated Rhino and Dr Connors until way past bedtime.
We had a restless night sleep and were up bright and early for transplant evaluations at LPCH. Owen started with an Echo and EKG. I love how chill he is with his legs crossed and arm behind his head. He sure loves his Echos!
We quickly headed over to a clinic room, which is where we spent the majority of our long day! It all started with Psychosocial evaluations with psychiatry team. We both felt it was a waster of time, but I can see how it would be helpful for some. They started with.. "Tell us about Owen's journey and your life up to this point.." That's it.
Our next appointment was with the post transplant NP to discuss transplant training. There was a powerpoint presentation about transplant, but nothing we didn't already know. It was about listing status, blood types, complications, what heart failure is, ect. We got a packet with pictures from the slideshow, so nothing new. It was nice to get to know one of the NP's that is part of the post transplant team. Other than that, nothing that we already didn't know.
We headed outside for a quick lunch and hurried so we could make it for his lab draw in time. After waiting 30 minutes, the lab tech said she couldn't draw the requested blood volume due to his size. So we were sent back to the heart center for clinic so we wouldn't be late. We waited another hour in this room until we saw the heart failure NP, but not one that we know. I explained Owen to her and she left the room.
The nutritionist came in and she asked what I feed him, I told her and we were done in less than five minutes. Our social worker came in and just updated her info, but she knows us well for the past three years, so not much to update. Then the cardiologist came back in with the heart failure NP. Finally.. I was going to do something productive!
Dr Rosenthal is who we have always seen, but he was out today and I knew that coming into this appointment. There are two heart failure cardiologists that just take on the pre transplant kiddos. Dr Bernstein is amazing and I thought it was a good idea for him to get to know Owen as well. He was very thorough in talking about transplant and why surgical options were not a good idea, but nothing we haven't heard before. I had a few questions about Tricuspid Valve replacement, because that is Owen's main issue. His function isn't terrible and his pressures would be Fontan acceptable, if his valve worked properly. He told me pros and cons to surgical intervention at this point, mostly being cons and said that I had very valid questions that he would talk to Dr Hanley about.
I really wanted to get down to the details about antibodies, IVIG treatments, post transplant care (biopsies), ect. Instead I got a lot of.. "we have to discuss him at transplant conference and make sure he is a candidate first." He said the main reasons he would not be a good candidate is if his liver was sick (then we would look at heart/liver transplant), or if he didn't have access for biopsies. He then proceeded to tell us we needed a CT Scan to view all his access points for caths and we need to make sure his Glenn site, where the superior vena cava meets the pulmonary artery is wide open. I'm pretty sure they checked that in his last cath, but they like other data as well. He then proceeded to say he would like a liver ultrasound, he wants Owen seen by a liver doctor and GI team at LPCH.
He wants all the tests and data prior to presenting him at transplant conference and they make a decision if he is a candidate for transplant. They want it done at LPCH and they want it in the next couple weeks. My biggest issue with this is.. we are HERE now!! Why have us come back in two weeks to get more data, when they knew the data was necessary in order to evaluate for transplant?! I have mixed feelings about this.
I know they needed labs for his antibodies, chemical panel, and other transplant labs (HIV, Hepatitis, CMV, ect). They took vile after vile of blood, poor guy!! There was way too much blood to draw in one day, so they took what they needed and we will go to the local lab at home and get the rest this week. The labs we took today for antibodies was the only productive thing we did all day.
We are now at the airport waiting for our flight home. It's been a LONG day and we are all exhausted. My questions about surgical options are going to be addressed to Dr Hanley. All the questions I have about IVIG treatments and antibodies weren't answered and won't be until we get antibody results back. The questions I have about listing for transplant are not answered as we don't even know if he is a candidate until they get further data. Data that we have to obtain at LPCH in the next few weeks. I'm a little overwhelmed.
I am going to call our regular NP and email Dr Rosenthal with a copy to Dr B (whom we saw today) and see if there is anyway we can do the liver ultrasound and CT Scan at PCH and send the data to them. If they are concerned about the liver, then we will head up to LPCH to see the liver doctor and GI. It's just so expensive and exhausting to travel back and forth.. thousands of dollars each trip. Anyway. I still have a million unanswered questions that will hopefully get answered in the upcoming weeks.
Owen's echo and ekg were the same, so there is no immediate concern about needing to be listed now, but he will most likely be in the near future.
Uncle Rustyn came down from San Fran to see us and also to surprise Owen with the Incredible Hulk toy! He was so excited he kept saying.. "I just love my Hulk so much!"
We had a restless night sleep and were up bright and early for transplant evaluations at LPCH. Owen started with an Echo and EKG. I love how chill he is with his legs crossed and arm behind his head. He sure loves his Echos!
Our next appointment was with the post transplant NP to discuss transplant training. There was a powerpoint presentation about transplant, but nothing we didn't already know. It was about listing status, blood types, complications, what heart failure is, ect. We got a packet with pictures from the slideshow, so nothing new. It was nice to get to know one of the NP's that is part of the post transplant team. Other than that, nothing that we already didn't know.
We headed outside for a quick lunch and hurried so we could make it for his lab draw in time. After waiting 30 minutes, the lab tech said she couldn't draw the requested blood volume due to his size. So we were sent back to the heart center for clinic so we wouldn't be late. We waited another hour in this room until we saw the heart failure NP, but not one that we know. I explained Owen to her and she left the room.
The nutritionist came in and she asked what I feed him, I told her and we were done in less than five minutes. Our social worker came in and just updated her info, but she knows us well for the past three years, so not much to update. Then the cardiologist came back in with the heart failure NP. Finally.. I was going to do something productive!
I really wanted to get down to the details about antibodies, IVIG treatments, post transplant care (biopsies), ect. Instead I got a lot of.. "we have to discuss him at transplant conference and make sure he is a candidate first." He said the main reasons he would not be a good candidate is if his liver was sick (then we would look at heart/liver transplant), or if he didn't have access for biopsies. He then proceeded to tell us we needed a CT Scan to view all his access points for caths and we need to make sure his Glenn site, where the superior vena cava meets the pulmonary artery is wide open. I'm pretty sure they checked that in his last cath, but they like other data as well. He then proceeded to say he would like a liver ultrasound, he wants Owen seen by a liver doctor and GI team at LPCH.
He wants all the tests and data prior to presenting him at transplant conference and they make a decision if he is a candidate for transplant. They want it done at LPCH and they want it in the next couple weeks. My biggest issue with this is.. we are HERE now!! Why have us come back in two weeks to get more data, when they knew the data was necessary in order to evaluate for transplant?! I have mixed feelings about this.
I know they needed labs for his antibodies, chemical panel, and other transplant labs (HIV, Hepatitis, CMV, ect). They took vile after vile of blood, poor guy!! There was way too much blood to draw in one day, so they took what they needed and we will go to the local lab at home and get the rest this week. The labs we took today for antibodies was the only productive thing we did all day.
I am going to call our regular NP and email Dr Rosenthal with a copy to Dr B (whom we saw today) and see if there is anyway we can do the liver ultrasound and CT Scan at PCH and send the data to them. If they are concerned about the liver, then we will head up to LPCH to see the liver doctor and GI. It's just so expensive and exhausting to travel back and forth.. thousands of dollars each trip. Anyway. I still have a million unanswered questions that will hopefully get answered in the upcoming weeks.
Owen's echo and ekg were the same, so there is no immediate concern about needing to be listed now, but he will most likely be in the near future.
It's time to board the plane so I am signing off! Thanks for prayers and I'll update more tomorrow. I hope this makes sense.
Saturday, May 26, 2012
Saturday Swim
We had a major cool down in the desert today, temps dropping from the triple digits to the 70s!! We took full advantage of the great weather and decided to go for a morning swim! Owen woke up on Friday morning with a kink in his neck and was a little miserable. He laid in bed all day and didn't feel well at all. This morning he is still stiff, as you can see he's turning his head to the right, but he was so excited to go swimming!
My sister brought Gigi, Liv and Nana {great grandma} to swim with us too! Nana hasn't been swimming yet this year and I think she loved it. It was pretty breezy and chilly outside, but the pool was as warm as a bathtub. It was pretty amazing.
Gigi and Kam are just like sisters and totally like to antagonize eachother. Gigi finally got on the raft...
Then Kam tipped her off! Classic.
Livvy's energy is ridiculous... she would jump in, swim to the side, and do it again. She just doesn't stop going and going.
Gigi was being Gigi. :)
Owen floated a little and then needed a break, so he layed on the chairs. Then back in the pool to float and back to the chairs. It's his routine. He did play a little with the diving sticks on the stairs for about five minutes. His energy level is pretty low as of lately.
After a bath and a little lunch, Owen and I took a long afternoon nap! Kam and Daddy hung out all afternoon and now it's time for a little family movie night. Tomorrow we will clean our house, pack our bags and get ready to leave for Stanford on Monday. Hope you have a good weekend!
My sister brought Gigi, Liv and Nana {great grandma} to swim with us too! Nana hasn't been swimming yet this year and I think she loved it. It was pretty breezy and chilly outside, but the pool was as warm as a bathtub. It was pretty amazing.
Gigi was being Gigi. :)
Owen floated a little and then needed a break, so he layed on the chairs. Then back in the pool to float and back to the chairs. It's his routine. He did play a little with the diving sticks on the stairs for about five minutes. His energy level is pretty low as of lately.
After a bath and a little lunch, Owen and I took a long afternoon nap! Kam and Daddy hung out all afternoon and now it's time for a little family movie night. Tomorrow we will clean our house, pack our bags and get ready to leave for Stanford on Monday. Hope you have a good weekend!
Thursday, May 24, 2012
Schools Out and Hair Talk
Whoa. It's been a busy week around here! This is the last day my little girl will be in Elementary School. It's definitely bittersweet, as I am so thrilled with how amazing of a girl she has turned out to be, but will always long for a second chance at those early years.
When looking at my blog header and then this picture, you can see how much she's changed just this year! Yesterday was another big day as she got the rest of her brackets on her teeth!! A couple of the teeth are barely through the gums, but we put brackets on and we are going to pull them together. Kamryn is so excited, yet feeling the pain at the same time. She is going to love the finished product.
I promised Kam that I would take her in to get her bangs cut again after the dance season ends and we can forever say goodbye to "the bump" style. She is excited to get her hair cut, layered and bangs short again. I went in to Dolce last night to have Ariana fix up my roots and throw some low lights in my hair. She wanted to blow it out for me so I let her. I never wear my hair straight. I did a little bit between Owen and Kam because I had way too much time on my hands. Now I just throw product in it and wear it curly everyday because it's so easy, bouncy and I love, LOVE my curls. I came home last night and Owen said "whoa mommy.. I didn't know it would look so fluffy and soft!! I think it's Booteeful and Lovedly." He kept staring at me and then would say.. "I never saw your hair like that before." My husband likes me both ways, but really likes my curls. What do you think??
Speaking of hair cuts.. this little guy is rocking a new age mullet!! It's time for a major haircut! We go back and forth because Daddy usually cuts his hair, but he's getting so squirmy with it lately. I sort of want to just take him to the barber and get it done real quick and be done with it. When we are getting ready to go to the barber, Owen says "I really want Daddy to cut it!" Then when Daddy is home he says.. "I really want to go to the barber." I think he's playing me for a fool. Ha! Either way, this shag is getting cut this weekend! Oh how I love this cute little guy!!
Tomorrow is gymnastics and Sis gets to come since it's the first day of Summer vacation. Then we have a weekend of swimming and getting things ready for our quick trip to Stanford. I am going back and forth emotionally on how I feel about transplant and the entire process. I will save it for another post. How it is almost Memorial day?!?
Thursday, May 17, 2012
Golden Scholar
Last night was Achievement night at Kam's school. I know I say it all the time, but we are SO proud of how hard she works at school. Not only is she in ALP (Gifted) program, she manages to keep straight A's, all year round. Never has she even skidded by with a low A, but only 97% and above.
With only one week left of Elementary School, Kam is ready to graduate and move on to bigger things, like Junior High!
Each year they hand out an award and a pin celebrating the student's success. In order to become a Golden Scholar, students cannot get but one B all year! I would have never met this standard when I was a student and that's okay. It makes me appreciate the work she puts in that much more! She challenges herself every single day to be the best at everything she does.
We are so proud of you Kamryn! I know your success will carry on into Junior High, High School and College. You are going big places!! Not only do you rock it at school, but you are an incredible artist, a great violinist, a beautiful dancer, and the best daughter and Sis ever!! I hope you know how amazing you are!!
I know Daddy loves his only daughter so much!! You will always be Daddy's little girl.
I am glad we all went to support you last night. All of us were so so sick, but we grabbed a bench in the back of the gym and enjoyed watching you be celebrated. We wouldn't have missed it for anything. This picture is just for Sis... "Look how sad I am." {Kam taught Owen the rolled out bottom lip and says "look how sad I am" when she wants him to do something for her. Now he is playing it up for Sis.}
I am still amazed at how fast time has flown by since you started Kindergarten. We love you so much Sis!!!
I am still amazed at how fast time has flown by since you started Kindergarten. We love you so much Sis!!!
Wednesday, May 16, 2012
Three Down.
Kam is definetly feeling better over the last two days so I think the antibiotics are helping. That, or she just needed time to kick this virus.
I am down and out for the count. This is awful. Owen is feeling better in that he has no fevers, but last night he was up most of the night drowning in his own drainage. Poor guy.
Daddy just woke up feeling it.
This beautiful Wednesday morning will be spent at multiple doctor visits trying to get rid of whatever icky bug we all have because it is MAY!! Who gets sick in MAY? It's 100+ degrees outside and we want to enjoy it before it's 110+.
I'm off to wait on hold to schedule appointments. Enjoy the day!! :)
I am down and out for the count. This is awful. Owen is feeling better in that he has no fevers, but last night he was up most of the night drowning in his own drainage. Poor guy.
Daddy just woke up feeling it.
This beautiful Wednesday morning will be spent at multiple doctor visits trying to get rid of whatever icky bug we all have because it is MAY!! Who gets sick in MAY? It's 100+ degrees outside and we want to enjoy it before it's 110+.
I'm off to wait on hold to schedule appointments. Enjoy the day!! :)
Monday, May 14, 2012
Sick Kids
Both kiddos are sick. Fevers, chills, aches, sore throats, and puking for Owen. It's been a busy weekend of laundry, motrin and sleeping around here. Mother's Day was wonderful because I spent it with my favorite three, doing what I do best!! I missed seeing my Mom, Grandma and Sis.. but we can catch up anytime.
We have a double pediatrician appointment today to get them both checked out and I'm kinda hoping it can be treated with antibiotics because riding this one out is proving to be brutal. Owen looks so weak and can't get out of bed. Owen is on day 2 of this and I almost took him in to the ER last night. His vitals are all good.. it's just this darn fever that won't budge and the puking. He's staying hydrated thanks to his gtube and slow fluid boluses.
Kam is on the up and up because she's on day 4 of this bug. She still has a slight fever and is feeling achy all over. Her cough is ick, but I'm hoping she'll be back to school tomorrow. She only has a week and a half left!!
We have a double pediatrician appointment today to get them both checked out and I'm kinda hoping it can be treated with antibiotics because riding this one out is proving to be brutal. Owen looks so weak and can't get out of bed. Owen is on day 2 of this and I almost took him in to the ER last night. His vitals are all good.. it's just this darn fever that won't budge and the puking. He's staying hydrated thanks to his gtube and slow fluid boluses.
Kam is on the up and up because she's on day 4 of this bug. She still has a slight fever and is feeling achy all over. Her cough is ick, but I'm hoping she'll be back to school tomorrow. She only has a week and a half left!!
I'm off to continue disinfecting my house because the adults are not going down! I have loads of laundry to wash bedding, pillows, ect. I'm kinda looking forward to going to the doctor later just to get out of the house. It's 106 degrees today in the desert and I am going to celebrate with Sonic Happy Hour!!
I hope you all had a fabulous Mother's Day!!
Friday, May 11, 2012
Oatmeal Cookies and Homeade Pizza
Once again, it is Friday and I am wondering where in the world did my week go?? Kam had pink eye Monday and today came home early from school with no voice and feeling exhausted. Owen had all his therapies and did fantastic. He did a cognitive concepts test with Speech over the last three months and graded average to above average in all areas. He rocked it!! He is progressing so quickly for being "home" schooled and I guess all the Superhero movies are teaching him something. Ha!
Owen has been begging to "Tooking" with me, so we baked the best Oatmeal cookies on the planet!! I buy the Coach's Oats from Costco and we love them so much! There is a recipe on the back to die for and I'll share it with you in case you don't have a Costco, or eat oatmeal, or whatever. They are crispy, chewy and oh so heavenly!!
Here is our creation before it went into the oven. It smells so delightful right now baking in the oven. I'll give you my quick and easy pizza dough recipe that I found years ago on allrecipes.com. It's so simple. I buy the pre made pizza sauce and we are Hawaiian pizza fans around here. You can really make any kind of pizza you want. PS.. the dough is not wet.. I just brush the crust with Olive Oil.
Owen has been begging to "Tooking" with me, so we baked the best Oatmeal cookies on the planet!! I buy the Coach's Oats from Costco and we love them so much! There is a recipe on the back to die for and I'll share it with you in case you don't have a Costco, or eat oatmeal, or whatever. They are crispy, chewy and oh so heavenly!!
1/2 cup brown sugar, firmly packed
1/2 cup granulated sugar
1/2 cup butter
1 egg
1tsp vanilla
1 tbsp milk
1 cup all purpose flour
1/2 tsp baking soda
1/2 tsp double acting baking powder
1/4 tsp salt
1/2 cup rolled oats
1/2 cup Coach's Oats (which are Steel Cut oats)
1 cup shredded coconut
Preheat over to 350 degrees.
Cream together butter and sugars for about 30 seconds.
Beat in egg, vanilla and milk. Milk just til smooth.
In a separate bowl sift together flour, baking soda, baking powder and salt.
Add the dry to the wet ingredients and beat, careful not to over mix.
Add oats and coconut.
This is where I also mix in chocolate chips, pecans or raisins. YUM!!
Drop by rounded teaspoons onto an ungreased cookie sheet or parchment paper. Bake for 12 to15 minutes until golden brown. Makes about 3 dozen cookies.
After the cookies were done, I let Owen lick the spatula for the first time ever and he loved it!! Then it was time to get Dinner started and Owen chose Pizza. He loves to beat the dough and roll it out. Kam usually gets her fingers dirty as well, but she is sick so no cooking tonight for Sis.
1 .25oz yeast packet
1 tsp white sugar
1 cup warm water (110 degrees)
2 1/2 c bread flour (or all purpose)
2 tbsp olive oil
1 tsp salt
Preheat oven to 450 degrees.
Dissolve yeast and sugar in warm water and let proof.
Add flour, olive oil and salt and beat until smooth.
Let it rest on the warm oven for five minutes.
Knead dough for five minutes (I let my Kitchen Aid do the work here)
Set on warm oven to rest for 15 minutes.
Roll out on floured surface with roller and place on pizza stone.
Decorate pizza.
I always use pre jarred sauce.
Then Canadian bacon, pineapple and fresh grated mozzarella cheese.
Cook 15 to 20 minutes
Let cook 5 minutes and ENJOY!!
I always serve with a side salad to make it seem healthy!!!
I hope you all have a fabulous Mother's Day!! Kick your feet up and enjoy being celebrated!
Tuesday, May 8, 2012
Gymnastic videos and update!!
Owen loves having physical therapy at the Gym!! I still can't believe it's been a full year since we decided at home therapy was no longer motivating. We got a spot at the gym with a great therapist and he loves going to "gymbtastics!!" He counts down the days and just loves it so much! It has been so good for him and he has progressed a ton! Looking back a year ago, he was JUST starting to walk and had zero leg strength. Walking from the floor to a mat was a difficult task and walking on a trampoline was really hard. Now he is learning to jump, walks faster, and isn't afraid to transition to the different gym surfaces (ie: Mat to tramp).
Owen wanted me to videotape him today to show off how well he's doing. Here's a video of him learning to jump!! He still only does slight calf raises, but he is putting everything into it!!
Then he jumps with his PT helps so he can lift his feet up off the mat. Look at that air!! Way to go Owen! He still lands with stiff legs instead of bending since he is trying to protect his legs.
As a reward for doing 20 reps each, he gets to jump with Michelle, or whomever he chooses. As you can see in the video, he's holding his head and trunk support so much better. He used to just flop around like a ragdoll. He still has a little strengthening to do with his trunk and neck muscles, but he's come so far!
Then he jumps with his PT helps so he can lift his feet up off the mat. Look at that air!! Way to go Owen! He still lands with stiff legs instead of bending since he is trying to protect his legs.
We are so proud of Mister Owen for working so hard!! He WILL catch up to the other kiddos eventually. Maybe he won't have the stamina that they do, but he will be strong and hold his own. Good job buddy!!
Monday, May 7, 2012
Wrapping up the Weekend
We had the best weekend together. Kam had her last orchestra concert of 6th grade and did a great job! She has progressed so much on Violin over the last two years. Next year she will be in the Junior High orchestra and we have heard fantastic things about her new orchestra teacher. I am so glad we can finally get rid of the bright purple orchestra shirt that has been worn for every concert since fifth grade.
Daddy took Friday off work because we had a billion things to catch up on, including a few medical tests I needed to get done. In the morning, Owen showed off his amazing Gymnastics skills for Daddy and Sis. He has seriously progressed so much in gross motor skills over the last year! I will take some pictures and videos tomorrow at the gym. After lunch, we decided to try to catch the new Avenger movie before the crazy lines started. The theatre was sold out, but we had fantastic seats!! Owen was in total movie heaven watching Thor battle Ironman in the park, then the Hulk throwing Loki around like a rag doll. The giggles and joy were priceless! We all loved it so much!!
On Saturday morning, we woke up and decided to take our first swim of the season! The water was perfect, and it was so relaxing. After a failed attempt at an afternoon nap, we jumped in the car and headed to the Cine Capri to see the Avengers for a second time with my family. Thanks Dad! The lines were wrapped around the building two fold, it was insane. Management was so sweet and saw Owen was in the stroller with all his tubes and feed supplies and let him enter the theatre before everyone else to ensure he got a handicapped spot. We were there 90 min before showtime, so we had some time to hang out. The movie was just as entertaining the second time around! The previews didn't disappoint either.. Brave, Batman, Spiderman.. we have a full summer of blockbuster hits coming up!!
On Sunday, we decided we needed some downtime and invited family over to swim. Owen was finally used to the water and let Kam swim with him. He kept going underwater and wants to swim so bad. He did a lot of kicking and bubble blowing and I'm sure he'll be swimming on his own by the end of summer this year.
Gigi loves to be thrown around, climbs on shoulders and likes to do "tricks" into the pool and have you give her a rating between 1-10. I totally did the same thing when I was little.
Livvy is so brave and just jumps around and wants to be thrown across the pool. "Again again!!" She has so much energy!!!
Owen likes to get in until he's tired, then gets out and lays in the chair. Then back in until he gets tired.. and it just goes on. I hate that he gets tired so easily.. it breaks my heart. Daddy was laying out trying to get tan, and ended up a nice shade of pink instead. Ha. I had SPF 30 on and I even got burnt. I will never regret paying extra for the kids SPF 75 and I slather them up!!!
Daddy took Friday off work because we had a billion things to catch up on, including a few medical tests I needed to get done. In the morning, Owen showed off his amazing Gymnastics skills for Daddy and Sis. He has seriously progressed so much in gross motor skills over the last year! I will take some pictures and videos tomorrow at the gym. After lunch, we decided to try to catch the new Avenger movie before the crazy lines started. The theatre was sold out, but we had fantastic seats!! Owen was in total movie heaven watching Thor battle Ironman in the park, then the Hulk throwing Loki around like a rag doll. The giggles and joy were priceless! We all loved it so much!!
On Saturday morning, we woke up and decided to take our first swim of the season! The water was perfect, and it was so relaxing. After a failed attempt at an afternoon nap, we jumped in the car and headed to the Cine Capri to see the Avengers for a second time with my family. Thanks Dad! The lines were wrapped around the building two fold, it was insane. Management was so sweet and saw Owen was in the stroller with all his tubes and feed supplies and let him enter the theatre before everyone else to ensure he got a handicapped spot. We were there 90 min before showtime, so we had some time to hang out. The movie was just as entertaining the second time around! The previews didn't disappoint either.. Brave, Batman, Spiderman.. we have a full summer of blockbuster hits coming up!!
On Sunday, we decided we needed some downtime and invited family over to swim. Owen was finally used to the water and let Kam swim with him. He kept going underwater and wants to swim so bad. He did a lot of kicking and bubble blowing and I'm sure he'll be swimming on his own by the end of summer this year.
That wraps up our weekend! We had a relaxing Sunday afternoon.. while Owen napped, I ran to get a much deserved pedicure. We had pizza with cousins for dinner and then Tate slept over. I gave the girls mani/pedis and Owen even got Hulk green toes. It was a fun night and today was an early start to our week!
Three weeks until we go to Stanford and I am looking forward to it! I have mixed feelings and I am anxious to get all these questions answered that are weighing on my mind. I pray the path we are meant to take is crystal clear!
Oh.. I forgot to mention that Kam has pink eye again! That's all. :)
Thursday, May 3, 2012
Approaching Summer
Owen is feeling so much better! Nothing ever came of his tummy xray last week and the vomiting subsided. It never seizes to amaze me that for the six weeks post anesthesia, he has major GI issues and one day they just end. He is back to his full feeds and feeling great! He has been taking afternoon naps some days, but I think it's just the heat making him tired. I know it's been wiping me out too!
I have a stomach ultrasound and labs tomorrow morning. I woke up on Sunday with horrible upper stomach pains, just under my sternum, that shoot through to my back. It continued on and Tuesday night woke me up three times out of a dead sleep. I finally got into the doctor today and she ordered the tests with a followup on Monday. Gallbladder?? Ulcers from stress?? Only time will tell, but it's nothing unbearable.
Kam has her last orchestra concert of the year tonight and then she is looking forward to putting the violin away for the summer. She is totally loving dance lately and I am amazed at how quickly she is progressing!! Her jumps are so effortless, and her kicks are gorgeous. I always have had short, muscular legs, but hers are so long and lean, she just makes it look effortless. I love that she comes to me for advice on her technique.. I may be off the dance floor, but I still got it! We can be found at 10pm doing pirouettes in the kitchen, laughing as we slam into the fridge. I love my girl so much!!
The hubs is busy at work and chills at home. I am so excited he can get away to go to Stanford with us this month. It's always nice to getaway together, if only it weren't to a hospital. Someday we'll be traveling to a private island or somewhere a little more glamorous.
For now I am off to the kitchen to make clay for Kam's diorama that's due Monday. But first, I'm going to sit here with my favorite boy and share my favorite snack. Apples, cool whip and walnuts.
