Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, June 26, 2008

The good news...

WE "HEART" Dr. Su!!!! Who called to tell us that Alex's heart looks so good... The function looks better, the pulmonary arteries look great, the aortic arch is fine, and the leakage from the tricuspid is a little better and we are just on a high right now.... It can in a second, but we are taking it... Will you think of our friends who are struggling in the hospital or at home.... We love you guys... Kaidence, Kyler, Teagan, Rhett and Issac B...

Tuesday, June 24, 2008

Pictures

This is Gator Pre-op in his cute hospital jammies... What a man, he has no idea what is about to happen!
Grandma and Grandpa "Grape"(great)

This is trouble!!! Ry, Drennon, Katie, and Alaishia
Ry and Jake at the splash pad yesterday....FUN FUN FUN
Posted by Picasa

Thursday, June 19, 2008

Fine and darn didlie dandy!

Just a quick note to say that Alex did fine today.. It is just our luck that when we are early they are late and when we are late they are running right on time...So we ended up not going in until noon.. They said it would take about and hour and a half.. When it was 2:45 and we still hadn't heard anything I panicked until they said it was due to wanting to get a really good echo... I could tell they tried a few times to get an IV... He is so chubby that it was hard... He has a nice foam roll on him right now... this helps so that nothing touches his ouchy.... We haven't heard about the echo because Dr. Su wasn't there today so I am sure he will give us a call when he gets a chance to review it... He is being a very good boy and doesn't seem to be in too much pain.. He did fine coming out of sedation. Well they actually did him with general because of his history with LM and reflux..We met a new anesthesiologist today Dr. Clark then his other one Dr. Hannon came in to say hi. Dr. Wallis did his Circ.(very nice MD) for all you other little heart guys that are doing this in the future, we highly recommend him.. We ran into our heart friends(the Pettits) tried to see the Brimleys.. I chatted a few minutes with a new friend Hollie... and got to see some of our fave people... Bonnie, Heather, Jerry, Sonja, well you know you are all our favorites... Just an all around great day... Glad to be in and out... It is so little stress compared to a heart surgery....

Wednesday, June 18, 2008

Study

Tomorrow Gator goes for his developmental study... He is also taking his A-game...He has learned so much in the past month that is blows my mind... Suzanne(EI) came today and was so impressed... She said now that he is working so hard on his motor skills that his verbal skills will slow down... So I need to really try and push the signing because he will pick it up best now... Plus it will help in his communication skills later.... One more day until his surgery... Poor little guy... I did a bunch of research online... I only scare myself when I do that... When will I quit... But if you want to see the actual video go to http://nocirc.org ... I am so grateful that he will be sedated and his pain levels will be closely monitored.... I will post as things go...I guess this isn't a before and after picture moment...LOL...(Just trying to be funny so I am not so nervous) TTFN

Sunday, June 15, 2008

Mobile

I forgot to announce that my baby boy is mobile... He has finally gotten the crawling thing down.... I am so excited...13 months and finally moving... He is so happy to sit on the floor and play that he never really understood the joys of moving to a toy... Time to keep the child gate locked and put the outlet covers back in.... Yeah!!!!!! I bet the PT will do back flips.... we have been working so hard.... I have a little footage I need to post.... ( so many things so little time)

Daddy's day

Just wanted to make a shout out to the best daddy there is..... We love you! We had a fantastic dinner and a yummy dessert.. I took pictures.. Ryan and Alisha brought kabobs back into our life....Thanks guys they were soooooo yummy! I have never actually made an ice-cream sandwich cake but it turned out pretty good.. Next time i will wait until the brownies cool all the way before putting the ice-cream in between... but the thin mints mixed in were a hit and I loved the mm minis that go on the outside.... I also wanted to thank my dad.. I think he is about the greatest ..... We love you!!!! Dave, you are pretty great too!!!! Thanks guys for being so wonderful!!! I am spoiled and I know it!!!!

Thursday, June 5, 2008

This is the LIFE

Well if you haven't noticed we have been MIA. I haven't answered the phone or blogged and people have been a little worried about us... We have been vacationing in Florida for the past ten days... Oh and while Utah has had weather in the 50s and 60s it has been in the 90s for us.... So this is the low down on the trip.. just the high lights cause I don't want to bore you with the nitty-gritty details... But remember this is my online journal so this might bore a few of you...

Saturday- The first time we have ever flown with kids and one with special circumstances.... Mind you, I have been calling the airline and packing for weeks....
the kids did great on the plain no stress, Gator slept...
Sunday- We went to church with Ryan, Lisha and Gracie- Everyone thought the girls were twins.. You really can't tell them apart from behind...
Monday- we hit the zoo... it was amazing to see all those animals moving around.. I am used to seeing them sleeping in their exhibits and not really moving. We fed the Giraffes and the Bonobos were in heat... That was a little weird to see monkey action... I think it was a little freaky to Ry who later at dinner tells uncle Ryan "We saw nipples today at the zoo" the pictures will explain everything...
Tuesday- we played at the beach. Gator ate sand and drank the ocean... Ryleigh would spend all day swimming if we let her...
Wednesday- Ryan and Gracie came to spend the day at the beach with us and Jeff and I burned..Some how we kept the kids from getting burned...We saw a guy catch a sting ray... Ryleigh has no fear of the water...She was so funny because she would jump in unassisted and kick under water like crazy and have these huge wide eyes and almost drown but come up smiling and happy and then do it all over again.. I need to get this girl in swim lessons quick...Gator loves the water too... I would try and get him to just hang out but he wanted to be right in the water with the rest of us...
Thursday-We decided to go and see the Dolphins, it would have been really cool if Ryleigh hadn't woken up on the wrong side of the bed and you actually got to touch them or something... Then we met the fam at the light house where we climbed 212 stairs to the top...What a view! Ryleigh got to go to dance with Gracie... She loved it... Jeff and I met a family who just got to bring home their little boy Sterling who also has HLHS and is doing pretty good... He has had some set backs, that seems to be the trend with these kids.. He seemed so little compared to Gator.
Friday-Jeff, Ryan and the girls went Kiaking while gator and I slept... We also ate at this crazy fun place, I have never had crayfish before, it was all yummy. After we got the babies to bed we stayed up late playing cards...
Saturday- Shopping for Gracies Birthday and swimming at the neighborhood pool... It was the most amazing pool for a neighborhood... It had a water slide and a splash pad all connected... WOW!!
Sunday-We spent at Magic Kingdom.... It was amazing the girlie's loved it and Alex was totally enthralled with everything... \
Monday- We went to Animal Kingdom.. It was cool, but not as cool as Magic...
Tuesday- We spent a couple hours at Down Town Disney and then the travel home...

It is so nice to be in our own beds and we are trying to adjust back to our time... I am catching up on hair and laundry and Jeff is catching up on work... I can't believe how much my garden has grown since we've been gone.. I need to go out tomorrow and weed, then I will take a few pictures to show you the progress...