Happy Birthday to me!

Today is my 29th birthday! Wow! 29! To celebrate my birthday today (and I got this wonderful idea from Alex' kindergarten teacher from last year) I'm going to do random acts of kindness today! I'm also asking that everyone who would like to celebrate my birthday today with me if you could all do at least one random act of kindness! This is the makings of a wonderful day for everyone!

Cath lab tomorrow morning

9/21/12-cath lab to place stent. It begins at 7:15am. Please keep Conner in your prayers.... Thank you

Conner loves to color

Conner isn't feeling well...

Ugh! Isn't it suppose to be Summer or something?!?! The time of year when we don't have to worry as much about virus'! Conner woke up from nap yesterday afternoon with a fever of 101.3. I gave him some Tylenol and he seemed a lot better but now... At 2:43am his fever is back reaching almost 102. I'm certain this is a virus because of some of the other symptoms.... He had a bit of a blue spell, and was breathing hard and grunting. Immediately I'm thinking it's his conduit from the Rastelli procedure he had last January. Or maybe he has some sort of an infection from cath lab on the 18th.... But then the logically side of my brain wakes up and says HELLOOOO BIRTHDAY PARTY LAST WEEKEND! Sigh... It happens. (SO thankful our new family addition Tyler wasnt there (he is Conners new baby cousin) newborns need to just stay healthy :) Poor Lilly isn't feeling well either so please keep her in prayer too... Conner has had some higher than normal heart rates since this fever started... It's gotten up to 130 but don't panic that's almost considered too fast but within the normal range.... sort of. His breathing is also a little fast too :-( considering what happened last January... Fevers really worry me. Could you all keep Conner and Lilly in your prayers (his friend since birth) she doesnt have any heart conditions but she does have cystic fibrosis and colds can get bad for her too. Thank you all for the prayers! Also,Conner has a cardiology appointment on June 14 prayers that it all goes well please!

Missing kitty

Pico (Leo's new cat) has gone missing! We think he got spooked by the fireworks last night and then the rain and wind this morning. I have been searching for him all day.... Please pray he comes back! Thank you!

Mini update...

Conner is a little cranky but ate dinner and is now playing with his cards. Okay so today we came here with the hopes of them being able to fix the narrowing and make it 12mm again (it was at 4mm) if they were able to get it back to 12mm we may have been able to wait another 3-5 years for surgery. He was only able to get it to 6-8 mm. We have to come back in 3 months, they will take a look and possibly put a stent in which will buy us one year before surgery. If they decide that a stent will not work he will have open heart surgery. This is heartbreaking to say the least... Please continue to keep him in your prayers.... Thank you

Post cath Conner

Just talked with the dr, Conner did well. They were able to open the conduit, from 4mm to between 6-8 still not as wide as they need it to be, but better. They want it be around 12 mm He has to have an echo in 3 months and then they will discuss either putting in a stint or replacing the conduit, the stint would give him another year at most, if it's an option.

Conner is having cath lab on Friday at 7:15 am

Please flood the Heavens with prayers for Conner as we rapidly approach FRIDAY.... As most of you know he will be having a balloon septostomy on "the take off of his conduit" (whatever that means) please prayer for strength and fast healing that the procedure works and the pressures in his heart drop to within normal range. That the right side of his heart gets smaller and within normal range. Prayers for NO INFECTION would be wonderful too. Prayers for this procedure to work with no complications... Thank you everyone...

4/17/12

These last few days have been hectic, scary and eye opening to say the least.  On Friday my step mom Kerry had surgery on her shoulder, on Saturday she had a small heart attack and ended up in the ICU for the night. She is doing much better now and was discharged on Monday... They told me if we had waited much longer...we would have lost her. Needless to say that was scary.  I have been helping get things in order for my dad and Kerry so that my dad can keep working and Kerry can just focus on healing and getting better.  My dad wasn't too happy with me today when I got there and I threw the half eaten chocolate cake that was on the counter, away... he said "Hey I was gonna eat that!" I said "I know, and now you arent".  We ALL need to focus on eating healthy and getting active and cutting out alot of sugar would be a good place to start!  Who is with me? Cut your sugar intake in half and go from there! Walk one day a week and next week two days a week? The following week walk three days? Any suggestions from anyone out there? :)

And moving right along....

Yesterday, my niece Angel (well she isnt technically my niece anymore, but to me she will always be my niece) text me to tell me that she was diagnosed with Papillary Thyroid Carcinoma.... (Thyroid Cancer) its the easiest cancer to deal with, but my heart breaks that she has been through so much in her life.  She will get through this a stronger young lady but if you would all keep her in Prayer that would be wonderful. And since we are on the subject, we all know I have Graves Disease.... well they found some new and bigger lumps on my thyroid. Im going in for a biopsy on April 24... Prayers for me would awesome as well! :)

Today on my way home, I got the call.... the call asking which day works best for Conner's cath lab... I spit it out as fast as I could before I just hung up on her.  "I spoke to Dr Johnston he told me Tuesdays or Fridays.... we decided Friday May 18 would work best for us." And then she said "thats perfect......" and then lost me in my moment of racing thoughts of all the risks to heart catheterization.... I really wish my sweet boy could have a normal life and not have to go through all this.  This heart cath will either fix the problems with the pressures in Conner's right heart, or tell us he needs open heart surgery to replace the conduit.  Im feeling mostly optimistic about the procedure but it still terrifies me that my son will be sedated, intubated, and have yet another procedure...  Can everyone please keep Conner in Prayer?

I will conclude this entry with this....

I have learned so much in my life, and I know I still have my entire life ahead of me. I have met many wonderful people in this journey, and I'm sure I will meet many more.  I have also said goodbye to many people, and honestly thinking about it.... I think that was good thing. I have learned that not everyone thinks the same and that is okay.  I have learned to embrace what was once my biggest fear.  I have shed many tears and said many prayers for children that have earned their Angel wings... This life is different, this life is scary... but I have ALSO learned to focus on the good stuff!  I have learned to "Cross that bridge only if I have too". I have learned to focus on the present.... SO when life is getting you down... Remember this, there are good and wonderful things happening all around you take time to stop and find those good and wonderful things. They will make you smile :)  Don't waste your time on things that, simple put... do not matter. Focus on having good people and a good environment around you at all times, this will also make you smile!  Did you know that it takes less muscles to smile than it does to frown? I want to have happy wrinkles when I grow up dont you?  Find things to smile about!

Much love,
Jessica

Old table Beautified!

I took my old table and put my kids art projects in it with Mod Podge and then varnished it. Once all that was done drying I laid a piece of Plexi Glass on it and VIOLA! It's been beautified!

4/12/12

Okay folks, the verdict is in! Im not sure if I should celebrate or cry? So I guess the verdict isnt in? Well, Im honestly so happy with these ECHO results!   Conners ECHO is essentially the same as it was in January, with a few numbers a little higher then they were last time. (Im talkin like from a velocity of 4.4 in January and now its a velocity of 4.6)  All in all his heart function is good! This is where I get confused and feel like I should just lay down and cry.... the valve on the conduit seems a little thicker then it did last time so it may have some calcium deposit on it.... but you know how it goes with ECHO.  He will be going in for Cath Lab in May.  We are hoping no later than May 18.  The goal for this Cath Lab would be to get accurate numbers and to balloon open the narrowing. Please keep Conner in Prayer :) Vitals were all good! Blood Pressure was 96/58 pulse 103, Pulse Ox 100%, he weighs 11.28 kilos (up from 10.78 kilos in January) he is 83 cm long, (up from 82.2cm). They told me not to worry too much about his weight because (too much weight isnt good for anyones heart) His amazing heart is doing just what he needs to do to keep my baby alive and well...he is growing very well!  I almost forgot!!! We are allowed to move Conner's propranolol doses out more!  He was having it every 8 hours but now we can go to every 12 hours!

And now for the stuff that REALLY matters.....

Conner has begun to enjoy the great outdoors, he LOVES to be outside! He likes to explore the entire park!!! A few days ago it was a BEAUTIFUL day outside so I decided to take Conner to the park while Leo and Alex were at school. He saw a dog at the other end of the soccer field he gasps happily, points his chubby little fingers and yells in his cute little voice "Goggy!" (As we all know that means doggy) And then he decides he wanted to play with the doggy, he proceed to walk/run... well it was more of a jog really... 3/4 of the Soccer field (of course I was right behind him) and the entire time he saying "Goggy! Goggy! Goggy!" With my redirection, we never made it all the way to the dog. It was leashed and with its owner but ya just never know.... We explored more, he saw little purple flowers and daisies for the first time ever! ( I will be posting pictures from my phone) Every time he wanted to get down a hill in the park (ya know those small hills nothing too big) he would turn and around lay on his belly and scoot backwards down the hill... I thought it was the cutest thing! We are working on him holding my hand, its working but he is SO independent and VERY determined...When its nap time or bedtime he is very specific about what he wants... blanket, binky, monkey, cup and momma or daddy cuddling with him.  He for some reason has to have the pressure of my cheek on his forehead or have his hand resting on my face to go to sleep.    I think he knows what his little body went through.... he has an appreciation for life like I have never seen before!

Leo has really taken on the big brother role and loves his younger brothers to pieces!  Alex and Leo argue alot like normal sibling rivalary stuff we are working on them learning how to problem solve together... a work in progress but so far so good.  He is VERY protective of Conner and Alex, more so Conner because Alex is "older than Conner"   Monday, Leo decided he was "sick" and came home early from school. (He didnt even walk in the building) When I asked him " Leo so why did you not want to go to school" he slipped up and said " Because I just didnt feel like going to school" I said "Oh....do you mean you are sick and thats why you came home early?" He said "Uh...Yeah" I said "Okay well sick boys who stay home from school stay in bed sleeping or reading" (Im trying to instill a good work ethic ya know?) I love how clever he is!  He really is the sweetest boy... He is doing GREAT in school! He went from reading and comprehending at a rate of I believe 58 words per minute at the beginning of the school year and now he is at 118 in January.  The other day when I picked them up after school we were walking to our car and the Principle stopped us and looked directly at Leo and said " Leo I want to thank you for being such a good friend to Christopher...he really needs a good friend like you"  That was an Im doing something right moment! Im SO proud of him!  He is really an amazing little guy who loves laughing and being silly....

Oh Alex, my sweet little character.... he is also doing awesome!   He is so curious about everything around him! He has for some reason taken on the interest of cooking in the kitchen with me again.  LOL I love this!  He is my mommas boy for sure!  Oh who am I kidding I have three mommas boys! LOL Alex and his classmate Zenith (a therapy dog) were pictured in the newspaper here in our local town!  Zenith has really helped Alex I think....and for those of you who are wondering... no Alex is not in Special Education. Zenith is his teachers dog and she brings him to class with her.... here is a link where you can see the picture of Alex and Zenith and if you want you can vote for Zenith after reading the story:

http://www.herodogawards.org/vote/?nominee=88985568#

Alex is doing great in school!  He is learning how to do math he knows most of his letters and letter sounds.  He is great at math and he has his "bad" days at school  when gets distracted in class but they are getting fewer and fewer apart. I have never heard him complain of anyone making fun of him or anything so it seems as though he gets along great with everyone!  All his classmates know me too lol they all say "Hi Alex' mom!" They cant seem to remember my name haha I think its just easier to remember one name.... Alex has been very attatched to me lately and I have to say I have no problem with that whatsoever! Before spring break Alex was very set on getting a mohawk.... I was very set on him NOT getting a Mohawk! We settled with a Faux  hawk.  (Posting Pictures from my phone)

Easter was great!  We went to church......I learned alot that day :) Im excited to return this Sunday!  After Church we had our normal Easter routine... well sorta.... we werent able to go to Grandma Jills this year because our car is acting up.  Other than that Easter was great! Conner LOVED looking for eggs! Alex found lots eggs and one golf ball... who by the way doesnt like collared shirts lol all day he was saying "MOM I dont like this shirt!"  Leo actually liked wearing his suit! I REALLY thought it would be the other way around lol!  (Posting Pictures from my phone)

I found this AWESOME quilt on Pinterest.com
http://starsandsunshine.com/2011/09/11/tree-quilt/comment-page-1/#comment-381

Well since it has a heart on it (like a carved heart) I made one for Conner.   Then I decided to make more! Im going make Leo and Alex one too!  Here is the picture of the one I made (Just finished it last night) this isnt a very good picture....but I hope you can see it okay.
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Sorry for the long update but I dont get on the computer very often and its hard to update from my phone lol well not hard it just takes longer....  I hope all is well with everyone! Heart hugs all around xoxo ~Jessica

Pictures!

Some pictures of Conner

Rest in Peace sweet Adam Sallee

Adam you have such an important job up there in Heaven... That's why God needed you home so soon.  He needed only the best of the best of Angels to watch over our Angels here on Earth... You are missed sweet boy....you captured my heart the day I first met you... I love ya little guy!

He was a sweet sweet boy. He was born just 5 days after Conner. I remember when I first met him, those big blue eyes and his uncertain but happy smile upon his face.  Beeping monitor in the background because he was happily kicking his cute little feet and the pulse ox wasnt agreeing with him. I don't have a lot of memories with Adam except the many times I walked by his hospital room and if he was awake I would stand in the door way and make a fool of myself in front of all the nurses just to see his big blue eyes light up and see that big adorable grin upon his face. I would always take the long way around to Conners room so I could pop my head in on Adam.... I didn't care if all the new nurses who didn't know me would question me stopping by his room.... I never went in unless his mom was there with him in the room... I kind of regret that.  :-(

Adam had Hypoplastic Left Heart Syndrome with one other thing but I'm not sure of the name.  He spent all but two months of his life in the hospital. He ended up having to have a heart transplant in September 2011. I was him the day before they got the news that he had recieved and Angels heart.  The next day his mom Casey called me to tell me the news I screamed and jumped up and down and to this day when Casey tells that story she says "it was like you won the lottery" lol I immediately said a prayer for the donors family. Then I cried.  Soon after his transplant Adams aorta ruptured and he was bleeding out.  The doctors were sure if he was going to make it through.  Adam survirved that!  He battled many cdiff infections.  He was a strong boy, who no... He didn't lose his battle with CHD he won his battle.... He kicked CHDs butt!   He touched so many lives and I will always tell his story!

On the evening of January 28,2012 he passed away in his mothers arms.   He has an older sister named Ella so please keep her along with his mother Casey and his father Jason in your prayers.  On February 11,2012 Adams service was held and it was a beautiful service filled with laughter and smiles.  The way Adam will always be remember.  I captured a few photos of his service while I was there and with his mothers permission Im sharing them with you....

Remember to spread awareness about Congenital Heart Defects.  They are the number one birth defect and there are over 40 known defects.  Nine out of ten heart defects can be detected at birth with a pulse ox test so make sure to tell everyone you know!

To donate in Adams honor go to

WWW.childrensheartfoundation.org and click donate on the right hand side.

Pictures :-)