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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.

Wednesday, April 30, 2008

silly

I have two of the craziest kids.... My little DIVA Ryleigh... If any of you have come over to see her through out the day, you know that she does her hair at least six times a day and changes her clothes about the same amount of times... she IS a princess, she doesn't just want to be one....If it isn't hair or clothes it is singing and dancing... She sings songs with her own words or she sings songs she has heard on the radio...

And Gator loves balloons.. He is a loon... It talks to them and eats them... He thinks they are pretty great.... We especially love free balloons... like from Macey's when you return the kiddi-cart or at Chuck-up-o-Rama.....
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Sunday, April 27, 2008

Birthday boy

This is my cute outfit that my Auntie Alisha and Uncle Ryan sent me.... I wore it to my party!!!
This is me riding the motorcycle (on my birf-day not the party day)
This is my dragon cake mommy built

This is my snazzy new wheels... Check out those folding seats, cup holders and canopy... This is one of my best buddies Bryson...He also has HLHS and requires O's still... But he walks around carrying his tube with him... What a Champ.

Thanks for all the special calls, cards, gifts, and people who came to say that they loved me.... We love you right back.. Love, from our hearts....Alex, Ryleigh, Brynn and Jeff
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Thursday, April 24, 2008

Alex went back to his Pediatrician's office for his 12 month vaccinations on Wednesday... He is looking great..He is up to 18 lbs and 14 oz that is the 10th % for his weight and 27 inches which is the 20Th % for height.. His head size is in the 50th %....So one thing is measuring "normal".. he normally doesn't do so hot after shots but this seems to be the best time ever. He gets to go on whole milk and can have almost all foods now! We also talked about his circum..... You know..Heheh... Anyway we have to go through urology because he will need to have it surgically done... So we will talk to someone when we get home from Florida in the first part of June....

Monday, April 21, 2008

I made it to ONE!!!!!


It's my birf-day shout hurray!!!! My little crabby guy has a nasty ear infection just in time for his birthday! But he is still a joy!!! We are so excited to be sharing this day with him and know that it took much to get him here... He does so many wonderful things for our family we are so thankful he decided to be part of it...

All about Alex-
My Name is Alex Jeffrey- My daddy loved that name since high school and always hoped to have a boy to give it to. I have my daddy's name as a middle name. I have One big sister that is three and I love her so much..She makes me smile and is so entertaining. I could watch her for hours...Sometimes she calls me DUDE or Bubba or even alex-gator... She lets me try almost all of her treats and food. I have a stuffed doggy that goes almost ever where with me... I love to be outside. It is my favorite thing to do, but, I don't like the grass.. I will put my feet in the air and my hands up high so I don't have to feel how prickly it is. I also love music, when I was little(er) I spent a lot of time at the hospital, I loved listening to music there it made me feel safe. I even have a song written special for me about Me. I am a quick smile and I have the yummiest chubby cheeks.. Sometimes at the end of the day I smell a little sour from all the kisses I get... I am a missionary for my church.. Even at One year old I have taught my mommy and daddy more about prayer and fasting... I help others to remember to talk to Heavenly Father... I am thankful for those prayers too! My mom has seen many miracles and thinks Me and Ry are still her little miracles... I can't wait for another year!!!!
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Friday, April 18, 2008

Spring Break

My little sisters came to stay with us for their spring break this week. We had so much going on that I haven't really had time to write it all down.. So I am going to have to give high lights instead of the play by play... Sunday Preslee came so that on Monday when Alex went to cardio I wouldn't have to have Ry with me... then Ave came later that day after taking a trip to the dentist... We played games and watched movies... We painted and played with play dough it was awesome... They helped me run errands and we took a trip out to the down town library, we had a nice culture lesson about homeless... Stinky as they are they have hearts... and rode the fantastic glass elevator that made Pres really sick... Ry talked Ave into laying by her until she fell asleep two nights in a row... and Ry followed her around like she was the princess of home.... and in Ry's eyes someday they will live in a calace (cross between a castle and a palace)... Alex loves his aunties and laughed so hard one night that everyone else laughed too!!! So the pictures are of Ave doing some aerobics and Ry following of course. We did have a nice time bowling... Alex is the champion with five strikes... just kidding... he did love to bowl though... This last one is Pres after her strike... See the X with her arms.... STTTTRRRRIKE!
The girls where so fun and continually making my kids laugh... I bet you didn't know that a tutu looks great as a hat!!! We also did Pres's hair bright red.... And Ave is pushing Alex around in the wipes box... See that look of pure joy on his face.... yeah that was way cool.... Alex's interventionist came out this week as well... She said he is making leaps and bounds... Can you believe it... We thought so many times that we would never get to enjoy diaper wipe box cars with him... he is rolling all around and just doing so wonderful... I truly could not ask for more.... It sure puts things into perspective for us.... what is really important is all the people in these pictures and the rest of our family and friends... nothing we could ever buy could make this profound an impact... So thanks!!! Oh and Pres made breakfast for us two days in row and this morning Ry decided she really likes to dip her toast in egg sauce... MMMMMM good...
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Monday, April 14, 2008

The best birthday gift

Alex went to cardiology today!!! His x-ray looked great, he still has an elevated diaphragm, but who knows why that is still like that, and his echo showed that his clot is GONE!!! Dr. Su let us stop the Lovenox shots today which was a way cool thing...He still has pretty crappy function, he just will have that I guess... And he still has some mild to moderate leakage from the Tricuspid, at this point we won't do valve replacement we will just watch it... He also gets to come off of the high calorie count formula, a nice thing to mix formula like everyone else, and maybe get to have whole milk after his birthday...Tonight I called home health to come and pick up his concentrator(the thing that makes his oxygen) we will probably keep a couple of D tanks around just for good measure. We also ran into so many of our sweet friends at the hospital and it was nice to see those of you who were there.... I am sorry we didn't have time to see all of you! We just had a great day... Alex gets to be more normal everyday.. We couldn't ask for more! YEAHHHHH!

Friday, April 11, 2008

My boyfriend ROCKS!!!

This is the before picture... as you can see my bedspread doesn't fit our huge mattress, in the picture below I couldn't believe how much dust was on the lamp... I think I ran my finger over it a little... Nice! I do love this furniture...Jeff made it for us for our first ever Christmas.. I have sentiment toward it so we are going to be using it in the guest room down stairs...(when that it finished someday)
The wall behind our bed was Jeff's first ever paint job! My first paint job was a wall in our guest bath... We were virgin painters before these jobs..
Our new platform bed has storage underneath, so much so that we were able to take out our dresser, and re-organize our closet.. Also we moved the bench out and put a smaller seat for putting on shoes, this makes our room so much bigger. The top of the night stands are Granite that Jeff salvaged and had cut... What a good recycle boy... We found the taller lamps at TiaPan.. For a steal of a deal... And the bedding was discounted so much that we had to call every store in our area before we found it...I got our new sheets from my mom and dad for Christmas... So everything feels so new and clean... You should have see the gross things we found under the bed... Dust bunnies and the like...EWWWW! I got a new full length mirror that matches to replace the one Jeff made me for a wedding present... I will have to post a couple pictures of it...
It is so fun to have a sweet hubby that has these kinds of talents... I just show him pictures from Pottery Barn or Crate and Barrel and say.." I really like this!!!!" Then he works his magic... He pretty much has the best wood skills... ( in a Napolian voice) Luuuucky!!! I love mooching off his talent... When people stop by and say how beautiful it is I say, thanks I have the eye for the wants and Jeff has the skills to make it happen... He gets an extra smooch from me!!!
I am going to run and take a few more pictures and then I will post about the other happenings.....
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Wednesday, April 9, 2008

All is different when it comes to my Ry...Yesterday Ry just wasn't herself. Grumpy, and a little rude..the little stinker stopped taking naps ages ago and I found her asleep in the big chair. She felt warm...Hummmm..Her temp read, 101.3...OH, a fever.... I still didn't freak out like a do with Alex... I just gave fluids, a little Tylenol and figured it was a bug..The difference: had it been Alex we would have been on the phone talking to someone who could reassure me that it was nothing and that if I still felt concerned I should take him to PCMC ER and run some tests... Which most likely would have happened after throwing up... With Ry I put the little puke bucket by her and daddy snuggled her until she fell asleep. This morning I let her sleep in and by this afternoon she feels great.. So I loaded up the kids and we went on a little trip to Ikea... The day just got better from there.. we got a reimbursement from the Hospital in the mail today... So with our tax return and this money we can but in the rest of our fence, do a little curbing around the flower beds, and just wait until you see the amazing new bedroom furniture Jeff is building... What a blessing... Now I gotta go do a little more cleaning...Most of you know that I am a little OCD so my room needs to be spick and span for the new furniture!!!

Tuesday, April 8, 2008

How does your garden grow!!!


I still think this is so funny that she loves to dress in this slip....SUCH a diva

#2
#3
#1
I posted these a little out of order but this is how our little garden is doing...
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Saturday, April 5, 2008

Thank you!

Can I just tell you how lucky we are to know all/most of you? I bet you know how emotional I get when it comes to kids with heart defects and also how attached I become to their families.. I just want everyone out there to know that I can feel your support for me and them. I can only imagine that our little Angel Ian and our little fighter Grace, could and can feel your prayers in their behalf. Thank you for helping whenever I have asked... I think I have asked for prayers on behalf of almost all the kids on our "Hero's" list. So thanks! And thank you for all the prayers in our behalf... When we look at Alex AND Ryleigh we can't believe how blessed we are. I heard a little prayer the other day that said "please bless baby Alex."(Thanks Miss McKay 2yrs)

Friday, April 4, 2008

Comings and goings of a normal family!

Physical therapy went so good.. Julie says Alex is a driven little man and works really hard...It is funny to see him work so hard. We just have to watch his color and make sure he takes lots of breaks so we don't over work him... Ry helps out so much with all of the goings and comings of the nurses and Pt and everyone...She is like a little mother. I feel bad because they usually come over for Alex and she wants all the attention...Everyone has been really good about helping her to feel special too! Our little plants are sprouting. Ry helped plant them and we talked about what it takes to get the plants to grow.. A little soil, sun shine and water.. She is so proud of her little garden. We are growing the HUGE pumpkins this year. She keeps asking if the pumpkins are coming soon.. Man is everyone else tired? I haven't been sleeping well.. I laid in bed last night with my eyes closed for three hours trying to convince myself that I did in fact want to sleep... Maybe I have been running on so little sleep for so long my body adjusted... The only problem is that I LOVE to sleep in. I rarely get up early in the morning.. I really need to fix this before the summer and it gets harder to go to bed and easier to sleep in... If anyone has any great ideas let me know... Luckily my babies take after their mommy and can sleep in too... Ry would sleep until noon if I let her... We are really doing great and feel like we have been living a dream... It is so nice to be healthy and happy and not so stressed about Alex's health. With that said, please remember the sweet families at the hospital who are struggling now.. We wish them days like these!!!!

Wednesday, April 2, 2008

Could it be a bigger day?

Today they will try and take Gracie of ECMO--- Our prayers are with their family at this time...

It is uncle Chaison's birthday Yay!!! Happy 22nd (he also recently set a date to be married to cute Jessica)

Today Alex's buddy Kyler is having his Glenn...Prayers going their way too!

We have been running errands and waiting for Alex's PT (Julie) to come... We gotta work on those jell-o legs again.

Tuesday, April 1, 2008

April Smarts Day!

I went the whole day without doing any jokes... This is the one day you feel like you can actually get away with something... I remember when I was Teaching at the academy I was prego with Ry and I must have peed on ten pregnancy tests so that my students could scare their significant others... It was a fun year.. I had nothing to work with this year.. I didn't want to freak any one out... I am sure it would have been terms of life lost if I tried anything even closely related to Alex or Ry being sick in any way..... So this year I played it smart... I hope you had a great day...Also, Jeff got a new toy... He has been eyeballing a new truck... Well one came up for better payments and a better interest rate.. Can you believe that... I will have to post a picture of his old one and his new one... So we are getting more truck for the money...

Dancing fool

Ry was having a rather bad day...But I got a few pictures of her smiling!

I tried to upload the video of them all dancing.. It is so funny, but I can't figure out why it won't let me do that one... so you will just have to have stills.
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Sleep? who cares about that?

This little man would not sleep... He is so dang cute what do you do but stay up and laugh/play with him.... It is around 2:00 am on Saturday night (morning)