September 2008
September 29, 2008
Happy tears were shed today...just thinking that my sweet Savvy has not had one overnight hospitalization since she received her liver transplant....one ER visit but that was viral....lots of drs...lots of "pokeys" but not ONE overnight hospitalization...tears of joy were shed today thinking about how amazing that is.
Savvy is sleeping... on her closet door there is a Snow White costume hanging...the costume she will be wearing this year... she will go trick or treating this year....I am so looking forward to this. If you have followed Savvy's little life you know that last year right before Halloween she was hospitalized it was the hospitalization that scared us so badly we decided it was best for Savannah and I to move to the Ronald McDonald House in order to be close to CHOP.
I was so determined that my little girl was going to dress up for her first Halloween that before we took her to the hospital I put her dress on...she could barely fit into it because of all of the ascites (fluid around her organs) ....Belle from Beauty and the Beast...AKA Jaundice Doll...and took pictures of her...I also have pictures of her in the hospital the same day holding "Jaundice Doll" with "Jaundice Doll" with blood all over her face from the IV that was taken out...yeah...very Halloweeny...but not the type of Halloweeny thing that one normally scrapbooks. Her Snow White doll came out after transplant...she laid next to her the day she was transplanted...for my little jaundice doll was no longer jaundice...so I can not wait until Halloween and my daughter gets to go trick or treating...to ask for chocolates that she can not eat...I will be the happiest Mami in my neighborhood walking with her little Snow White!
September 28, 2008 - Warriors ... their bodies may be small but their spirits are enormous
Savvy is taking a nap. We have had an amazing day so far...we spent the morning having breakfast at the beach...can't ask for better! Our little friend, Xander, is not having such a good day though. He is in the hospital. I look at the picture and see Allison and Savannah...so healthy after having to fight for their lives..to fight like Xander is fighting. It breaks my heart that any child should have to go through this...we know all to well what his family is going through...please keep them in your thoughts and prayers. The hope is that his daddy is a match and be a live donor for Xander...I pray this to be the case...another baby reminding us why it is so important to become an organ donor.
Xander's site is:
Yard and Bake Sale for Savvy's Friend, Aiden
Please help if you can
September 26, 2008
She is such a girl! We are going through the clothes that she has outgrown so I can pack it up for her Madrina Rosie! She is going to be an Abuela real soon...and her first grandbaby is going to be a girl!!! We are soooo excited about this. Well, I sat down with Savvy so we can fold the clothes and pack it up and Savvy has decided that she must try on every piece ... on top of what she has on already...and these are pieces of clothing that do not fit her in the first place...she is just funny to watch!
We had a great day running around and doing errands today. Our day started early and I had someone comment about Savvy's scar. They looked at it and then said, "I guess this means no bikini's for her." Ahhhhhhhhhhhhh..............How very wrong she is! I shook my head and with the biggest grin told her NO WAY! Savvy is the proud owner of bikini's and she will PROUDLY show off her scar! Oh, I realize that this comment was not meant to be hurtful in any way and it was not... for I went on the rest of the day thinking wow...how lucky are we to REALLY know how LUCKY we really are! Does that make sense? I look at Savvy's scar every day and thank God for it...it is the most beautiful thing that I can imagine..it is not scar but a symbol of life and love...and the Gift that was given to us so selflessly.
So here I share a picture of Savvy yesterday with her symbol of love proudly showing in her bikini! I LOVE IT!
September 25, 2008
Savannah had a glorious day in Jerilyn's pool taking a swim lesson i.e. being spoiled by Jerilyn....she did so well I was so proud of her! She learned how to reach for the edge and was quick to pick up how to kick her feet. I am sure she is sleeping now dreaming about "kick, kick, paddle, paddle!"
September 24, 2008
I have so many emotions running through me today. I am heartbroken that Gavin lost his battle with liver disease...I have no words for this just sadness. I am glad that I can check on "my" other "liver babies" through their sites ... it gives me a sense of comfort although their journeys sometimes have bumps on the road their is something about pulling up their page and seeing this amazing spirit jump from it....Take a look at Bethany's page http://www.caringbridge.org/visit/bethanysalmon ...oh that sweet girl in her tutu can bring a smile to anyone's heart!
And at the same time it saddens me that we have these websites...these pages on our children's journeys...we have them for different reasons...to fight for them through our words, to share their journeys, to share our feelings, to raise awareness, so many reasons but they started for the same reasons....our babies are sick and they have had to fight for their lives. The have had to fight harder in their few short days, months, years of their lives then most of us have to the 20, 30, 40, 50, 60 years we have been on this earth.
We share our pain and we celebrate our children's triumphs...just read Aiden's page www.caringbridge.org/fl/aiden
His medical condition and fight is written about but the focus is the joy and spirit that this little boy has and the love ... the love .. the love.
I too celebrate! We have had a wonderful week ... Savvy is doing GREAT! I came back from CHOP and I was scared...scared that cancer was a possibility for my little girl. It just angered me that she would have to face ANOTHER battle...like the one she is currently on is not enough. I learned yesterday that this is such a small possibility ... not really one to even merit being written about. Savvy will have to visit a hematologist if her WBC count does not improve but things will probably resolve themselves with a medicine switch. I only share this because this journey is So hard. It really is...we celebrate the good and yet still worry. As fun as we try to make it for Savvy to go to CHOP .. it is still a hospital visit and it is not what we want for our child...but it is our reality....although a good reality considering what could be.
So, yesterday I took my exam with a horrible headache and had a tough time in class for the subject matter was death and dying...to later learn that our transplant coordinator wrote us and told us not to freak about the "C" word ... my headache got better.. Savvy and I went to the mall and rode the carousel..how she loves it...she claps at the sight...a lovely day...then I come home to learn that Gavin has passed...my heart aches for his family.
Then this morning I learn that my INSANE friend, Ocon has walked into a kickboxing gym and offered to fight the owner/CHAMP to raise funds for Savvy's COTA fund and for another little boy in Nicaragua, Marlon Pastora, who also has faced the same battle as Savvy. Seriously, this made my heart smile SO LARGE! The last "battle" we were apart of was a COOKING BATTLE between Robert and Ocon...and although he did put on the Rocky soundtrack for his presentation NO ONE tried to Hit him...a shove here and there to get to his yummy food faster but no one hit him! The man then forwards me a picture of the fighter with CHUCK NORRIS!!!!!
So lots of ups and downs lately but I continuously Thank God for my sweet Savvy. I LOVE HER MORE THEN I CAN EVER EXPRESS! I love her so much I actually purchased a bathing suit so I can get in the pool today for her first swim lesson...and I am going to shave my legs!!!
September 23, 2008
I have learned that another of our "liver babies" has gone to Heaven. Gavin has passed away...you can learn about his brave journey in life at http://giftforgavin.org/- please keep his family in your hearts and prayers.
September 21, 2008
I spent the day at Super Papi's office studying for my first exam since getting back into school...Savvy had a great day with Super Papi and I missed them both! I have a lot of emails to respond to ... I apologize but promise too do so after my exam and will get the pictures of our weekend downloaded to...just wanted to pop in and let you know that Savvy is doing great!
September 19, 2008
We are HOME!!! We have a lot of pictures to share but we will do that later for now we are just pretty tired from our little Philly adventure. Overall, everything went really well...our appointment went great! Savvy was taken off of 2 more medications!!! WOOHOOO for the Warrior Princess! She is now on ONLY 2 medications TOTAL!!! Absolutely amazing! We have to have labs drawn again in two weeks because of her white blood cell count being low...did not think too much about it until I got home and started to google causes...I did not like any of the answers so I will wait to hear back from our transplant coordinator before I freak about anything....for now Savvy is super fabulous!
We got to visit with friends and even ran into our "Hope child", Nadia, and her family in the waiting room! They had the appointment right after us so we were able to catch up a bit...it was so nice to see them....the last time we were at CHOP we were not allowed to visit Nadia for she was inpatient and Savvy could not be exposed ... I tried to get pictures of the girls playing together but I got in trouble for it (hospital rules) but we did manage a group picture of of us all.
Savvy had her labs done and her her exam but no other exams or scopes that we were afraid of since her vomiting has pretty much gone away .... well... OF COURSE, since it is US and I feel like I am on some kinda candid camera show at times I of course have a story to share. So Savvy has done really well with the Prevacid and her vomiting has decreased a lot and even seem to be going away...woohooo...this is what we told our CHOP team. SOOOOOOOO as we are getting ready to board the plane back home...you know when everyone is in line and starts to get antsy like cattle running towards their dinner....Savvy VOMITS all over her Mami!! Yup....AFTER our appointment right before we are about to board the plane...PUKE city! Of course...it just would not be US if this sort of thing did not happen...so I ask if I can preboard a few seconds earlier to clean her up for if I leave to go to the bathroom I will miss the plane...so here we are on the plane cleaning her up and changing clothes for we have spares for her BUT of course no spares for me so I just wipe off as much as I can and I cover up the vomit with a sweater...NICE! So we now have a VERY tired little girl who has just vomited and we think it will be an easy few hours for she is certainly going to go to sleep....and NOPE! She stays awake the WHOLE time feeling fussy...and then literally as the plane hits the tarmac in Tampa she falls asleep!! So we wait for all of the passengers to get off so it is easier to grab our sleeping baby and YES ... it just would not be my journal if I did not share a poopy story! I pick her up and as she relaxed I feel diarrhea all over my arm... oh goody.... could I be so lucky? So now I have dried vomit on my shirt a sleeping baby on my arms..poop on my hand .... ahhh....let's just say I am glad to be home....glad Savvy is sleeping in her crib ... and am glad for the invention of Soap! It is the little things in life that make me so happy...Soap....what a wonderful thing!
September 16, 2008
We are heading to CHOP tomorrow morning so I will not be updating for a few days...no news in this case is good news! Super Papi has bought a pink little back pack for Savvy ... it is so cute and tiny so she can take her little treats on the plane herself (it also has a harnest attached for safety reasons at the airport with an independent toddler)...it is wild to see how much she has grown during our journeys...we started with an infant carrier, then taking her in a stroller and now she will be walking to the airport with her own little back pack...just surreal.
We were laughing today at something cute that she had done and I realized that not a day goes by that she does not amaze us with something she does...it is just an amazing privilege to watch her grow up!
So we are off to Philly!
September 15, 2008
Happy Birthday Tio Ozzie and lots of "Wov Wov" from Savvy!!!! Today, my brother turns the ripe old age of 40!!! Wooohoooo!!!! This weekend his amazing wife pulled off a big surprise for him and had my sister and I fly to North Dakota to surprise him at his birthday fiesta!
I have this thing about flying...uhhhmm...I think it is called FEAR! So, with this said I have to share my near death experience (okay..maybe not near death...but go along with me...) The flight from Minneapolis to Fargo is a short one in a smaller plane and Saturday was one of those flights that was well....pretty bumpy...Savvy would have loved it!
At one point my tush is in the air and the only thing holding me down is the seatbelt....I am waiting for the oxygen masks to come on down...then I remembered. I had bought a nice Hershey's Chocolate bar at the airport and I pulled it out of my purse...if I was going to die ... I was going to die happy! I opened my chocolate bar and closed my eyes thinking of my sweet Savvy and savoring every bite...you know...all of a sudden ... I was okay with things! Death while eating chocolate is how I want to go! So it is OFFICIAL...CHOCOLATE does cure everything!!!!!
Well...obviously, I did not die. The plane landed I met my beautiful nephews and sister in law, Pattie. We hung out and waited for my sisters flight to arrive...then we had to figure out how we were going to get into the restaurant without my brother seeing us...Funny thing was as we are pulling up to the restaurant he calls my sister just to chat...Pattie and I shout at the same time...DO NOT ANSWER THE PHONE!
So we beat him to the restaurant and we hide in the bathroom...yeah with my 4 year old nephew cause he would have ratted us out in a heart beat! Cute Jaiden story I have to share...my sister had grabbed him from the car without his shoes because we were minutes in front of my brother...so she carried him in the bathroom...after a while she looks at him and says, "you are heavy"... so I asked him if he could become lighter for his Tia....he says, "yeah...just turn off the lights!"
So, the surprise went off without a hitch! and it was awesome! I got to hang out with Grandma and Grandpa Pace whom we adore! Oh...if I could have snuck Grandma Pace into my suit case without facing kidnapping charges I would have! She would be in Florida today with me!!!! She rocks....oh yeah...and rolls....I got her on video shaking her groove thing with her grandson!!! (Did I forget to mention I was videoing??)
North Dakota is beautiful but I missed my Yummylicious little Warrior Princess so bad! It was so awesome to get off the tram and see this beautiful little girl grinning and saying "Mama" when she saw me! LOVED IT!!!
Today, we headed out to the beach...it is a beautiful day...the day is so clear I could see Tampa and St. Petersburg across the bay...just gorgeous! I watched Savvy chase birds on the sand this morning determined to catch one and now I am listening to her talk to her stuffed doggie as she goes "night night" for her nap.
What a great weekend!!!
Sept 14, 2008
More laughs and giggles at the beach yesterday, along with a long stroll on the sand and a major effort by Savvy to put all the washed up shells back in the ocean. I guess that is where the shells belong. Savannah and I were enjoying the afternoon at the beach while Mami was up in North Dakota to surprise her brother on his birthday. Poor Mami- she called from the airport in Minneapolis and said she was already cold! And that was in the middle of the day! For some reason, she did not want to discuss that Savvy and I had to wait until the afternoon to go to the beach, as it was just too hot in the middle of the day.
Have to get back to running after the Warrior Princess- and stop her from feeding the dogs Cheerios one by one to the dogs from her high chair.
Happy Birthday Ozzie!!!!!!!!!!!!! Savvy sends hugs and kisses to her Tio, and she cannot wait to come up herself and see everyone.
I heard it ... I love it ... I am a Super Woman
September 12, 2008
Savvy is so yummylicious .. she just is...she has a way of looking at you from the side of her eyes and a grin when she knows you are about to say "no" to her...she has a way of shrugging her shoulders and putting her head down when she is "seriously working"...she has a way popping out those dimples and lighting up a room when she is happy...she is just yummylicious!
I was listening to this country song on the radio today and it made me think...Garth Brooks sang words that are so true to me...
Sometimes I thank God for unanswered prayers
Remember when you're talkin' to the man upstairs
That just because he doesn't answer doesn't mean he don't care
Some of God's greatest gifts are unanswered prayers I remember September so clearly last year...my baby girl was dying...we had been waiting for "the call" to come...it had been months and no one who tried was a match for a living donor...and Savvy was getting sicker and sicker. She had ascites, trouble breathing, could not sleep well...I do not need to recount it all...my little yellow princesa was dying ... I was a zombie doing everything in my power to control something that was uncontrollable. I remember so many afternoons rocking my little girl hoping she could get some rest ... we would be by ourselves at home and I prayed...I begged...GOD PLEASE TAKE MY LAST BREATH right here and right now...PLEASE DEAR LORD give the days, the hours, the minutes that are meant for me to my beautiful little girl...PLEASE do not let her suffer any more..please give her health and happiness....I BEGGED. Last night, Robert and I got no sleep...Savvy had a rough night...and although I wish she had the health that so many others enjoy I am grateful to be here...to be exhausted...to be her Mami. Some of God's greatest gifts are unanswered prayers Had God listened to my pleas... I would not be here to enjoy my beautiful yummylicious little girl. None of us know how much time we have..and as I hope that I have atleast 80 more years to enjoy my sweet Savvy if I have only 8 more hours I know that I am blessed for them! Although..my words may not sound happy they are...they are written with joy in my heart for I have never been so happy in my life ... my little girl is here with me ... taking a nap ... and in about 20 minutes she will wake up and she will not be struggling to breath...she will not be jaundiced...her liver is not failing...and I am so very grateful for it!
September 11, 2008
It is almost 4 pm and Savvy is still sleeping..she had a magnificent morning which wore her out! She went to the beach and played in the playground. Our friend, Jerilyn joined us and Savvy just loved it! She was kicking her little legs trying to swim...this was the first time she had ever done this .. I think she is going to be a little fish in the water! Cool thing is that Jerilyn was a swim instructor so Savvy is going to start her swim lessons next week! How cool is that?!
Next year at the "Swim 4 Savvy"...Savvy may be swimming herself!
(Thank you Jerilyn for the pics! I LOVE them!!!)
September 10, 2008
We had a long wonderful day today...just came home from playing with cutie Riley and we are all off to bed! Savvy has a day planned at the beach tomorrow...so we have to get some sleep!
XOXO!
September 9, 2008
Oh what a day for our little princesa! She got to go to the mall and ride the carousel this evening...and LOVED it! She is so good...we did a little window shopping and passed the carousel a few times and she claps when she sees it but she does not throw a temper tantrum. She knows she gets one ride and no more and is so good when she is done with her ride...I am always amazed at how spoiled we are with her! And speaking of Spoiled...Savvy received some gifts today which just brought a huge smile to my face...Thank You Simone..we all look forward to seeing you next week! I know you check her blog every day so I will mention it here. I will send you an email with a picture when Robert down loads it...it so happened that we were leaving the house when Savvy saw the package at our front door and we happen to have the camera in the car so we took pictures of her opening up her package....a package for Ms. Savannah is always from you! So we told Savvy...this box is for you...we think someone is spoiling you...and she runs and grabs her box..as heavy as it was...it was cute! She is going to freak out tomorrow morning when her waffle pops out of her new PRINCESS toaster! Yeah...a Princess toaster for a princesa! Who knew they made princess toasters??? and it actually plays MUSIC when your breakfast (Blueberry waffle ... haha Sarah) is ready! Seriously beyond cute!
Then when we got home from the mall she had ANOTHER package...this is a funny story but it was not captured on film...I am sure that Savvy will thank me for not taking this picture...she was holding a princess potty seat so PROUDLY as I was changing her diaper. She grabbed the little handle and started to walk around the house as if it were a new purse...way too cute! and she would not let it go not even on her changing table...yeah....I had to promise to put it on the potty for her tomorrow....so hmmmmmmmmmm.............do I share the future potty training stories??? I doubt that I will be able to resist...
Team Aiden!
Here is Lisa's latest journal on our sweet friend, Aiden:
Tuesday, September 9, 2008 4:16 PM CDT
Whooo hooo.. Lisa from my guestbook! 300,000th visitor! I love how you wrote it, in the ps/ part of the journal entry. Like Oh and uhhhh.. I was 300,000!! LOL I was so excited! of course you didn't post your email, so if you wanna email me, aiden will send you one of his drawings! Hand signed! RolexH@aol.com
To all others, and karen karen karen karen (lol) thanks so much for the notes and playing along! Now only another 9 months or so to get to 400,000... Thank you for stopping by and reading about our little family and our big miracles Aiden and Mason!
update
Wow Aiden has been feeling amazing lately. Yes with the lowered steriods we are having some GI issues, and HIVES, but other than that..He has more energy and just looks like some of the weight is coming off a tad. We had that thing we had hoped and pray for come true.. we got a reprieve. A break from all the bad news and more bad news. When our pediatrician went to bat for Aiden and called me to tell me that they were waiting on the fluids, it was just exactly what we needed. Just needed some time. As a family to have fun and enjoy just being somewhat normal.
So IF YOU LIVE IN FLORIDA.. what else is there to do in the middle of summer(yes it IS still summer in florida!) but swim! When I hear we needed to reaccess his port and run nightly IV fluids on him again, I thought, NO!!! we never made it to the beach! So on Saturday, after joey worked some, we made it to the beach! It was a gamble with him unable to tollerate the heat well, but once in the water, and with lots of ice cold gatoraide and watermelon he did fine. well, better than fine, he did wonderful!
the boys just arriving all excited to go swim and dig in the sand!!
riding the surf!
Mason and Joey having deep thoughts, and looking for little fishies to catch.
It was sooo fun, well until the storms (aka hurricanes) brought in the jelly fish. so we decided to pack it up and head to my parent's pool.
The boys in their towels, ready to go to MiMi's!
Mason in the pool.. he loves to swim!
Joey as usual doing some bizarre acrobatics with the boys. He has the need to throw them, flip them, and put them on his shoulders whenever swimming.
Aiden lounging in the pool. It was so great to see him like this. Even if it is only 2 pounds that he has lost, aiden was swimming better and able to even go under and hold his breath for a moment or two. I sat there watching just letting out tiny exhales. It is like we have been holding our breath waiting for our boy to come back to us the way he always was. Yes he has always been sick... but until this year he was never so weak, out breath, and big from the steriods. This is the first time I felt like I had a sick kid, EVERY SINGLE DAY. Not just when he is in the hospital.. but every day. So each day I see him improve it is little moments where we exhale, hoping to exhale all the way soon.
Anyway, we had a great weekend, well all except the 7 hours joey had to dig up our plumbing because it was completely backed up. Poor joey on the roof with a snake, then in the pipes and caps and all these other fancy plumbing places. Of course with a house that is 60 years old, it wasn't so easy. Here is Joey in a huge hole working his tail off getting it all fixed.
Look at my MAN! ok so yes I admit, I am only posting this cause this is one of the reason I love this man! some women want their mate to pick them up in a fancy car, wear designer clothes, and say all the smooth things to them. I on the other hand love a hard workin may-an (that is the word 'man' with a deep southern drawl) that takes care of this family. I know he is deeply dissapointed about not getting that job, but lets just say with out getting into details about it, everyone (including those who interviewed for the job) were all shocked joey didn't get it. It really made no sense. So in those cases I like to think, well it must have been God protecting us from something! Better things out there to come, WHO KNOWS! But it wasn't ours to lose so what can we do about it.
So anyway, we had a wonderful weekend. FINALLY SEPTEMTBER.. AND IT WAS A GOOD WEEKEND. I can't believe our entire summer has been sick. Why do kids ever have to be sick. It makes no sense, and it just makes me feel so confused. I think of this weekend and smile thinking, Thank GOD we got to have a little summer like it used to be.
There is a large, maybe HUGE, possibility we are leaving for cincinnati this weekend. I spoke to Aiden's cardiologist in cinci and he said he would schedule Aiden's surgery for the week of the 16th. While there we will have aiden's annual appointment, as well as see a very special hematologist who specializes just in red blood cells and research on issues with them! Cinci is amazing, 32 clinical hematologists on staff. THIRTY TWO! and we get to see one that specializes in one tiny microscopic cell that is wrong with Aiden. What a miracle!
You may have read the word "annual" in the previous paragraph. You might wonder what that is. That is the appointment that we do every year. He gets his bones dexascan, eyes, hearing, labs, cholesterol, and kidney tests. This is the normal (yes i did say NORMAL) LIVER ANNUAL POST TRANSPLANT VISIT. And with out jumping the gun, and getting too far ahead of myself, aiden will also soon be coming off his prograf (anti-rejection medicine) to help stop the GOD AWFUL new disease process he has with his autnomic nervous system. I can't wait!!!!!! Just can't wait!!! (for those wondering, he will go on another antirejection drug called rappamune in replace of the prograf)
I have sooo many other things to tell you, but I will end on one tiny other thing... even though he isn't really well enough to start, and be in the heat, tomorrow Aiden will have his very first night of baseball practice. NOT T BALL.. BUT BASEBALL! He is playing on the "big fields" with the REAL dugouts. I realize he probably can't even run bases anymore, or heck even walk all the bases, but this will be a type of medicine for him that will bring healing, like all those chemicals and IV'S can't bring.
I can't wait.
I LOVE these photos, it brings tears to my eyes, I can't help it. Just months ago.
Aiden, we love you.. we will get you all better soon. I can't wait to see you play ball this season as a big boy with no T and in the big dug outs. You are my hero, you are a fighter. You have amazed all of us in this journey and I promise we will get past this very short time where you feel so badly. Mommy will have her cheering section with baby brother and Daddy there to make sure this is the best season ever. Love you my sweet angel... Mommy
Update coming.. there is so much more, but for now, I am just happy to end it rejoicing in good news
Love,
The entire Hawk family!
Joey, Lisa, Aiden, Mason, Rolex, and Biscuit (the puppy with the smallest bladder ever)
"Many are the plans in a man's heart, But it is the Lord's purpose that prevails. " Proverbs 19:21
Happy Birthday Tom!
We hope that you have a wonderful birthday!
(Hanna...you make sure your daddy has an extra special day! and we are sooooo proud of you for working so hard on a subject you do not like and getting an A!!!)
September 8, 2008 - One Year Ago
I was looking through some pictures of my beautiful baby girl last year...she is almost unrecognizable from the baby she was last year...
Here is a picture of her in her swing...the only picture that I have that she is not crying ... her belly was very large and she had trouble breathing so the swing and her bouncer was where she lived .. it helped her breath ... laying down was very hard for her. She was so yellow and although she did not sleep much she was easily tired....
Today....
Pancake syrup brought the cutest giggle out of Savvy this morning. She ate half of a BLUEBERRY (YESSSSSSS Sarah....BLUEBERRRRRRRRRYYYYYYY) waffle and then Super Papi put a little drop of pancake syrup on the remaining pieces ... Savvy recognized the syrup and started to giggle..it was so cute! I had to kick Super Papi out of the house....he would stand next to her all day and tell you how cute she is if you let him!
Little Miss Savvy is playing with her blocks but wants my attention now...she wants us to read some books ... She is holding up Brown Bear Brown Bear What Do You See? so off to read I go!
September 7, 2008
Guess who does not want to take a nap today? Me???? No...you guessed wrong! I would LOVE to take a nap! But my little Warrior Princess does not agree...I do not even need the monitor on to hear her...she is yapping away to "Jasmine" her doll of choice for today's nap time. Jasmine apparently is a great listener and good friend because Savvy is going through what I believe is her entire life story with her! And what a life that has been!!! Hence the animated voices I hear from her nursery.
Today, we are monitoring Hurricane Ike...it looks like we are going to be lucky again and have it miss us....Hurricane Hanna was very sweet to us (Thanks Hanna!) and it missed us completely... This morning it looked like a category 4 could come around and visit us...well...not us for if a Category 4 was heading over here...we are OUT of HERE! But as of the 11 am advisory the cone is no longer heading to Florida although it is heartbreaking to see that Louisiana may get hit again. One thing I have learned about hurricanes though is never to underestimate them so we will keep a close eye on those "cones".
Ohhhhhhhhhhhhhhhhhhh...................I think I hear ............... YES! Silence from the nursery....Wooohooooo!!! I have some reading to do so I am going to take advantage of the silence!!
September 6, 2008
Savvy attended the Ladie's Tea hosted by the St. Vincent De Paul society...this event made my heart so warm for last year Savvy did not attend the tea for she was so sick. I vowed to bring her back this year and today was the day. She had such a lovely time making a hat with all of the other girls...it was a nice morning!
I had someone come to me after I spoke and they told me that their husband's sister died at the age of 4 ... she too had Biliary Atresia .. at the time pediatric organ transplants were not an option. It brought tears to my eyes to speak of our donor angel...the only reason my Savvy was able to attend this event was due to our Gift...for anyone who is not a donor...please I beg of you to become one. No child should...no one should ever have to die waiting for a chance to fight.
September 5, 2008
So guess who had an awesome time at the library yesterday? As soon as we walked in her eyes became huge! She loves books .... and when she found the little book shelf that Mami would let her grab from she plopped her little tushy down and started "reading" out loud! Just way too cute!
Then we headed to the park....as soon as we turned to the park she started to clap her hands...how cute is that? Cheering from the back seat ... ah...Mami did good! I started to feel pretty yucky yesterday afternoon so I thought it would be great to have her run around the park and get her energy out before the "yucky" hit big time and I would not have the energy to play...so she did and the beautiful thing about it was by the time I got home and was feeling Super Yucky...she was happy to sit in her crib and "read" her books to her little dolls...she just yapped and yapped ... she spoils me!
So today...I just wanted to share the funny little Savvy moment that made her Mami go "duh"...I got on the laptop to reorder two of her prescriptions that are running low...at that very moment Savvy with a little feistyness in her says, "Aqua" nice and loudly...I went and got her the water and kept typing the info to get her meds ordered...then I hear a temper tantrum about to erupt...."Aqua Aqua Aqua" and the feet start going and then "Night Night"...ohhhhhh.....duhhhhh.....it was naptime and my little princesa wanted...no was demanding her nap and her MILK.."leche"...she still has a hard time saying "leche" so any liquid to her is "Aqua"...I am telling her...but you have your water...I do not know why you are upset...well....duhhhhhhhhhhhhhhh........let me spell it out for you Mami..."Night Night".
So, when I figured it out and poured the rice milk I heard a giggle...then she extends her hand and walks me to the baby gate by her nursery..I open the gate and she walks to the rocking chair grabs her monkey and waits for me...OKAY now...how smart is this kid?! It blew me away! I am so grateful for her I can not ever express it enough...
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Team Aiden!
Okay...so this is it! We need to pray harder then we have ever prayed before...our sweet Aiden's little body is giving him such a hard time...His spirit remains as amazing as it has ever been...if you spend two minutes with this child you will feel so blessed to have had the honor! He is just a yummylicious little 6 year old with a wisdom far beyond his years and a love in his heart that is eternal. He needs all the prayers and positive thoughts that we can send him...please continue to keep our sweet Aiden in your prayers.
Here is his mommy, Lisa's, latest journal:
http://www.caringbridge.org/fl/aiden/
Thursday, September 4, 2008 12:30 AM CDT
Well it has been a while since I updated cause I have a hard time talking about all of this. Yes that means I am actually... GASP... at a loss for words. You know this is serious when I don't want to talk.
So in the new tradition of avoiding talking about all the heavy stuff that weighs on Joey's and my heart, I thought I would let you know about Mason first then I will get to Aiden. Mason, WILL BE TURNING THREE in 3 weeks and has started a 2 mornings a week at a preschool. YES homeschool mom, sending a kid to school. GO FIGURE. The thing about school for Mason is that he isn't potty trained, doesn't eat food, and has some mild physical delay, and it all of that is ok for now. He will remain with the 2 year olds, and it works well.
It has been very hard for him with his separation but I know it will be a tool of continued therapy. Mason still is attending both Occupational therapy and speech therapy. He is is specifically working on feeding currently. He doesn't eat. Plain and simple, he drinks his nutrition, refuses food of all kinds, and is working his tail off on therapy to accept food and eat. Granted you may read this and wonder 'DOES HE NOT EVER EAT!', yes he WILL eat somethings, but it isn't much. This is NOT the story of the picky 2 year old, trust me.
here he is in therapy at All Children's sitting in his feeding chair working hard on ... umm... eating!
Yes i know it sounds crazy, this is why I never talk about this, cause I can feel the discerning eye looking confused at us. When asked I always let everyone know how amazing Mason has done, how he can run and laugh and is so smart. I am sure if I didn't have another child that basically has a body that isn't cooperating at all.. I would be only talking about how difficult and frustrating this is.. .BUT.. I look at Mason, and know he has come so far!
The other child... Aiden...
BIG HEAVY DEEP SIGH
It is true, lately I have HIT that proverbial 'LIMIT'. I have not once, but several times, found myself in tears feeling like I am failing. Of course I know that I am also succeeding, but am battling something that has determined to make me a failure. I have looked and searched for a reprieve. It does come, we have joy & we have peace, but then it seems like it is swiped up pretty quickly.
I was chatting with a friend today, telling her I know others looking in on our lives would assume Joey and I are depressed or needing medication or are in a desperate way.... the thing is... and this comes from the therapist.. I am NOT depressed. I am a happy person. I am having NORMAL feelings to a difficult situation. MY SON IS SICK.. HAS BEEN SICK FOR 6 YEARS.. IT JUST SUCKS. Are we not supposed to feel bad ever! It happens. We feel bad, and it is ok. IT is normal for any parent in this place to feel bad. WE WOULD BE SICKOS if this was ok with Joey and I.
I preserve this caringbridge page to "getting it all out."
I get to tell everyone what is the story, the plan, all about the medical stuff for my son. I often get to use this as a platform to express my pain, joy, relief, love, happiness, anger.. etc. BUT please know, it is a moment in time for me. I AM NOT staring out windows, wiping drool off my chin because this has controlled our lives.
WE WILL NOT GIVE ILLNESS VICTORY!
Instead, here I come as a tool of therapy to share the things I don't and will not utter out loud. Things like this:
They want to do the nightly IV's again. MORE of them.. He was on 500ml's a night, now it will be 750ml's a night. Then after we pump more IV fluids in his veins because he can't keep fluid in his vessles, we will allow him to wake up and then give him a diuretic to get RID of the fluid the seeped out of his vessles to his tissues. THIS in itself, if you stop and think about it, just says.. his body isn't working right.
We are lowering the prednisone now even more. He, as you can tell from the pictures, is extremely cushoniod. This is a fancy word for he has gained a ton of weight. So in an attempt to get him to drop this weight faster we will lower more than it has ever been in his lifetime. I am teary eyed with fear of this and excitement in the same thought. I personally believe he will be an allergic disaster, but I also remain HOPEFUL he will be ok and even better. I am waiting for his scheduled surgery time for his heart monitor to be placed, and then we will schedule our 'big' trip to cinci. During that trip we will meet with a hematologist again, just to discuss the strange hematological issues, Giant platelets, atypical lymphocytes and high red blood cells.
When we finally tweak medication after medication.. get more stable.. then Aiden hopefully soon will come off his prograf and we pray and hope he will not reject his liver.
The failures of medicine and the failures of his body are all moments for learning and planning. Not one person who is involved in Aiden's care is not passionately careful and concerned. Aiden is one in a million. This is bizarre and unusual. And frankly it sucks. But we will get there.
Yes I hate the IV fluids. I hate him being hooked up and uncomfortable, and sad. I hate that he can't swim with it, but I am reminding myself in time this will balance out. It will. It has to.
PLEASE pray that Aiden gets a break. That our family gets a break. Some peace in all of this. Please pray we get answers, wisdom for his doctors, and just unending JOY for Aiden.
I can't thank you enough for being patient, especially my friends. I know you have called. I know a few of you leave messages and just don't give up. I am owing a lot of people thank you notes, Mina- thank you. Yours is coming. I am just sort of behind on being a good friend to others right now. I do apologize.
We are waiting the news on when to start his IV fluids again. I already decided that if we have to I am waiting till Saturday so BiG HEAD ED can do it.
OK YES.. it isn't so much fun on this website. So I will leave you with photo that makes me smile. Just darn it.. it does.
here is Aiden in the hospital a few weeks ago. He and his best buddy had jacked up the $5000 bed as high as it could go so they could touch the roof. I don't know what makes me so stinking happy about this picture. Maybe because it is kids being kids in a very unconventional place.
But more to me, it seems like a metaphor for this crazy road we are on...
"We may be stuck in bed, but at least we are breaking the rules and having fun!"
Guestbook Game: we are close to the 300,000 mark on the page.. if you are that 300,000th visitor please sign the guestbook! Aiden loves this game! Also thank you for the people who do the jokes in the guestbook! We (especially joey) love them! Aiden has been retelling the 'IF A COW FALLS ON YOU .. MOOOOOOOOOVE' joke. Thanks HUGO!
Waiting for an incrediable healing,
The HAWK FAMILY!
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September 4, 2008
So I have this image of going to the library and reading my school books while my little princesa grabs a book and reads it next to me...then reality hits....we are going to the library today but I am not going to even bother to take my school books for I will be reading all about bears and choo choo trains and enjoying every time Savvy points at a picture of anything furry and says, "dahhhgg" while I tell her what the name of the animal is...
So after she finishes her rice and beans we are heading out to read some books...books that are on both of our levels...one with lots of pictures...yeah...I can not tell you how disappointed I was to open my school books and not see any pictures in it!
I think I will look for a book about brave little princesses today.
September 3, 2008
She is just Savvylicious! I missed my little Warrior Princess yesterday but I got to hear all about her day when I got home from school. Luck has it that she had a tough little night on Monday...Tuesday morning...so we were up late with her and then what are the odds but she woke up at about 5 am hungry! So...I grabbed my liquid gold and headed to school...oh so refreshed!
I did not have to worry about her at labs at all...apparently she walked into the center with her father...waited for the paperwork to be done..grabbed his hand and walked him around the corner -- pointed and said, "Ticker"...yup...I had no idea how savvy she really was...but it tickled me pink to hear the story! (We always grab a sticker before the appointment...it is our little treat...and then she gets 2 from Julie....apparently this is a treat that will continue for a LONG time! If Savvy has anything to do with it...)
In the middle of the day I got a text message from Super Papi..."We have poop!"...I was delighted to hear this too!!! (Of course, she had not pooped when they went in for labs so the stool sample could not be dropped off in the morning). Yeah...the man knows how to make his wife happy....flowers, wine, poop messages....
Today, I grabbed my little savvylicious princesa and took her to the beach. It was interesting to feel the water for it was cold and wavy...not like it was a few days ago..must be the effects of Hurricane Gustav. Speaking of hurricanes...what is going on with this? We are watching 3 more that are developing and heading to Florida...so far...we have been spared but chances are that we will not avoid them all....if we have to get hit by one...let it be Hurricane Hanna...since the only Hanna(h) I know is so sweet and adorable...so her hurricane can't be too much trouble .. can it?!
Savvy continues to vomit but otherwise she is doing amazingly well....yeah..that is a weird sentence to type. She has so much energy it is just a beautiful thing to have the privilege to witness daily. Oh...and let me share this cute little Savvy story...now ANYTIME she hears a motorcycle she yells..."Da Da!" (Even if he is walking right next to her! Too cute!)
September 1, 2008
I start school tomorrow and it seems surreal. Going off to school all day when my little princesa will be getting her blood work done and having to give a stool sample. In the BIG picture this is not a huge deal...it is a part of our lives...but in the "Mami picture"...it is a HUGE deal! I will not be with her to take care of her...to walk her to get her stickers before her labs... to comfort her because she is so hungry and can not eat until 30 minutes after her appointment. In a perfect world I could go to school and take Savvy with me...but then in a perfect world my Savvy never would have had Biliary Atresia..she never would have been on the brink of death awaiting a liver transplant..she never would have needed a liver transplant...she never would have gone through the countless procedures that she has faced in her little life time...she would not need regular blood work...she would not have a look of fright on her face as vomit comes uncontrollably out of her little body...in a perfect world.....
Okay...so I know that I am going through some separation anxiety. I know Savvy will be fine...more then fine..she will be with her Super Papi who will probably manage to spoil her on at least one occasion tomorrow. I know that but it is hard to go on and "start" this part of my life again...it is hard knowing that I will be taking a lot of time away from my Savvy to focus on my studies...and a lot of time away from studies to focus on my Savvy...it is hard to know that I would leave school in a heart beat again if my Savvy got sick and yet hope to NEVER have to make this decision...
Well, my Yummylicious little Warrior Princess has a big day ahead of her tomorrow and so does her Mami and Super Papi...Needles in your arm when you are only ONE...well that sucks! Needles in your arm without your Mami holding you well that sucks more!
We always try to look at the bright side of things ... we know how blessed we have been but some times it is hard to hear from others how lucky Savvy is...YES, we are blessed but Savannah's childhood has been hard. It is hard to hear this for we are the ones who clean up her vomit and look at her face with fright...we are the ones comforting a beautiful child who does not understand why her little body does this...we are the ones who do everything in our power to hold our princesa and not have tears stream down her face as needles get placed in her arm..knowing it hurts...how could it not and yet cheering her courage on...we are the ones who travel back and forth to and from doctors - yes..doctors we like and respect but no child should have to visit these offices so often...we do consider ourselves very blessed for we have our Savvy here with us but at times we simply want to scream out ... HOW LUCKY DO YOU THINK SHE REALLY IS???? Come on ... WOULD YOU TRADE With her?
Sorry....I just felt the need to vent a little...just did not want someone to read my post and tell me how lucky I am that I am going back to school...I know I am blessed but as I sit in my first class I know what my Savvy will be going through and frankly...at ONE...she should not have to!
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