Jill's Journal

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False Alarm, No Peritonitis for Gav…He’s Feeling Great!

False Alarm! Gav had presented like peritonitis, but in the end, after two days of running in fluid samples, his white blood cells had tamed down and he was feeling great. So they don’t know what it was, but it was not peritonitis!

We had a moment this week when we decided Jay and I are officially kinda “grown ups” (do you ever really feel like a grown up?) and parents…Jay went to plug a pesky parking meter and all he had were “Chuck-e-Cheese” coins. We also decided to do a haircut to our lawn midweek instead of postponing till the weekend when Lauren said to Jay, “look Dad, we are growing a tree outside,” it of course, was not a tree, but a weed that had grown to about her height! And I gave my first official dirty look to a pack of teenagers that used curse words around my little cherubs at the county fair…

Have you ever had the feeling that you have just crammed a whole summer into a weekend! This weekend started on Thursday when we went downtown to get in on the wristband night for Lauren at the local fair. She was a brave little trooper and rode the dragon roller coaster with her little friends and loved it, although this year, the hands stayed on the bar (taming down a bit from the hands flying above the head last year). Her favorite, she said, was the nauseating ride that you spin yourself in a circle until you can’t stand up, so she rode that a good five times before we were scared from the fair with the impending thunder booms. She spun herself right into her car seat and fell fast asleep on the way home. Gav loved the bright lights and people watching as we pushed him around in his little red convertible. He wants to be a big kid so bad and ached to get on the rides and run around with the kids (maybe next summer).

Friday, we biked to the library for a little story time and to get Lauren’s pick of her weekly movie. Her newest obsession is Madeline, a little red headed French girl, who gets into some sticky situations. Gav tried to convince another mother that he could indeed hold her baby (he is into babies right now, he wants to hold and love them and just be their friends). However, he has not said “baby” yet (he calls them by his standard “dog”). We then chased down some jumbo bubbles that were out to attack the neighborhood…my two kids and the neighbor kids saved us (you can thank them later). Gav went after them more with his mouth than fingers, but who’s to judge, it made for a good popping sight. Then, it was early to bed since Lauren had her big wheel race the next day after the parade.

Jay and I had joked about putting Lauren into training for the big race, and she took us seriously. So every night she was out on her “Diego” big wheel, up and down the street working her little heart out. She is a very dedicated athlete (and apparently, Jay and I are over competitive, because we had inadvertently convinced our three year old that training for a big wheel race is a good idea). On race day, we had her all lined up ready to go and you saw all the dads at the starting line giving their last minute “how to” race advice and Lauren takes off and places second in her heat, after a little wheel slippage since they are just a hair long for her legs (Jay and I are convinced that this is what sealed her fate). Long story short, she makes it to the semi-finals and loses interest and is bumped from the finals. This year no trophy, but a nice big wheel shirt and now we know we have two more years to train her(just kidding), look out 2009! It was loads of fun, she still called everyone in the family and told them that she won, so life is still good! We capped off the evening with a campfire and a smore-making fiasco! Marshmallows everywhere!

Sunday, I had a little me and Lauren time (like the first time in two years so it was very special) and I took her to the pool and splashed around a bit. Forget 18, apparently kids become adults at almost 4, because she could “do it herself momma” and not only could she do it herself, but I had to be like 100 feet away. Gav and his Dad bonded at home with a little walking and ball rolling (Jay thinks he has quite the arm and has not yet fully ruled out the Major Leagues). When we got home, we had a cook out for Grandma Nancy and Papa Dino and her cousin Katie who played and played and played.

I think tonight the kids are putting us to bed because they still seem wide awake while Jay and I are stumbling up the stairs! Sweet dreams and here’s to chasing fireflies that flicker at night!

Jill

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Gavin Admitted to Hospital Last Night…Need Your Prayers.

Gavin was admitted to Children’s Hospital last night after a rough week of two procedures. They are not 100% sure what is going on, so they will be doing some more tests right now. They are currently working on hydrating him through an IV they placed in his leg…we are hoping that we will be out of here later today so we can all celebrate what an amazing father Jay is at our house!

Keep praying, he is in fair spirits, a little cranky, but still playing peek-a-boo and givin’ out love (however, anyone in scrubs is not gettin’ the love!)

Jill

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Life…It Is What We Make Of It

There is no such thing as normal. I was on the phone the other day when my older brother broke that news to me…”There is no such thing as a normal life, there is just life, Jill”…it’s funny how when you are outside of normal you try to break back in, like it’s an exclusive club that you have been denied access to, but when you are in it, normalcy, you grow restless and you try to break out of it. I can complain because I am tired, but I am happy with the two little kiddos that take all my time, and there is no other place that I would rather be. I can be angry that my son has been inflicted with this disease, but then he has survived, more than survived, he has become a warrior, and for that we are forever grateful…I can cry because I don’t know what tomorrow brings, or be happy in the fact that I still hope that tomorrow is coming…my life may be unpredictable but we have been blessed.

I remember when Gav was first born, when my body could not stay awake any longer, I would drift into sleep and dream that this was all a nightmare and when I woke up it would go away, but then instead of an alarm clock I would wake up to a “ding ding ding” and it was like the start of a boxing match. I kept thinking, then, that it was a battle with God that every day I was in the ring with him fighting for Gavin to stay here with us, I was so mad. It was so surreal, you always say you “just” want a healthy baby, but you never really think that you are going to have an unhealthy baby. Even when I was coming in daily for monitoring with Gavin in the womb I thought, these doctors are probably overreacting, they are probably wrong. It’s like you are in a strange fog when science can’t explain it. This disease has brought me to my knees several times, but I have gotten stronger and less angry and more and more grateful…not for the disease, but for what it has forced me to learn. There are no promises, there are moments, and what we make of life is what it is.

I’m not sure if you saw the news story about the transplant heroes that crashed their plane while flying to Michigan…I just wanted to take a moment and remember them. People who decide to do these jobs: doctors, nurses, surgeons, scientists they are our angels without wings, and some of them now just got their own pair. I have met amazing people in the health care profession, some started our journey with us and are no longer a part of our care, some are still with us and I am sure there are some that we have not met yet, but each and every one of them is why we have our son today…each hold a place in our heart that can never be touched and will never be forgotten. They are brilliant, talented, loving individuals who give a big chunk of their life to make other people’s life better. I listened to a news conference of the family members of those who were lost, and they said if any good can come of this tragedy, may it be to highlight the need of organ donation…May they be blessed and all those who love them!

I hadn’t journaled for a while, I was in a bit of a mental winter. It’s funny – for two years I have been waiting, praying for transplant, and now that we are getting closer and closer, it’s getting scary…just the unexpected, the different cares. I feel like I could do dialysis in my sleep, but this will be a whole new ball game, and the weight of making these kind of decisions keeps you up at night…weighing all the pros and cons of every center so that you never look back and think, we could have done something more…filling out the living will and thinking about what could all happen, it’s a lot to imagine. God forbid, I know that if anything did happen to me there is no doubt that if I had to do it all over again I would do it again and again and again… know that Gav, there is nothing in this world I would not give you or your sister! I can’t even think about losing Gavin, because that is one thing that I don’t ever think I could bare.

Lauren is still amazing with each bat of her lashes. She recently fed the giraffes at the zoo and petted sting rays while riding on miniature ponies and convincing her Grammy that getting a blue moon ice cream would be top notch…I tell you I would like to do a tag team on her life sometimes! Then there was her star debut, her first performance on stage. It’s pretty cute to see 12 little shiny patent leather tap shoes under the curtain skirt and six smiling faces as it opens. Jay and I thought she may be a flight risk, but just the opposite, she almost had to be peeled off the stage. Blowing kisses to the audience and curtsying with the best of them – it was quite adorable. She wakes up every morning and lets me know that she is “all fired up” and does a couple of playful punching jabs in the air like she is ready to fight through this upcoming fun-filled day with all that she’s got! We made a vegetable garden in her old sandbox and I am hoping that something grows out of it (I do not have a green thumb) but we are happy that the seeds are sprouting!

Gav seems to be doing much better, in fact he is turning into quite the little handful! He is up to high 20 lb range and now is off the growth hormone because we think that may be what is causing the allergies…he is a crawling like crazy (his favorite is trying to climb the stairs) and is starting to walk a short distance while I hold his hands up. Every time I see him moving it reminds me of the dancing baby on Ally McBeal. We have a bit of a bad slapping habit that we are working on curbing, but he always has been our little Muhammad Ali! He had a procedure done on Monday (6/11), but we still didn’t get the answers that we needed. The nurses in recovery said that he woke up swinging…he’s one tough cookie, he knows when to laugh and when to fight! They give kids a drug before they go in that makes them forget what happens and makes them a little loopy (they probably should extend the same courtesy to their parents) and he was loving up the nurses and the anesthesiologist before being taken in. Hopping from one to another and giving “zerberts” while completely out of it… no exposed skin is safe from the zerbert attack!

Hope you are enjoying the sun, I know the kids are starting to get tan because from the moment they wake up until we drag them kicking and screaming to bed that is where they want to be! Take Care and may you be blessed!

Jill

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Jill Declared Gav’s Official Kidney Donor…Thank You for Your Prayers!

ONE OF THE BEST DAYS EVER HAPPENED TODAY, I’VE OFFICIALLY BEEN DECLARED AN ELIGIBLE DONOR AND GAV’S LAST SURGICAL OBSTACLE HAS BEEN AVOIDED. WE FEEL AS THOUGH WE ARE STEALING ALL THE MIRACLES AND WANT TO THANK EVERYONE FOR ALL THE PRAYERS, THEY ARE WORKING!!!!!!!!!!!

WE ARE LOOKING AT TRANSPLANT ANYWHERE BETWEEN JULY TO SEPTEMBER, JUST A FEW MORE LBS AND ALL OBSTACLES WILL DISAPPEAR! THANK YOU GOD, ITS AMAZING!!!!!

Jill

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Test Results Up for Matching Donor Final Review … Gav Needs Tests For Possible Surgery

Making the decision to have a child – it’s momentous. “It is to decide forever to have your heart go walking outside your body…” – Elizabeth Stone. If we all just saw each other as such, what a beautiful earth we would share.

I used to watch the news everyday and cringe. But today I saw a little girl try to catch a yellow butterfly she called “sunshine” while tossing over dandelions, and a little boy laugh as a dog licked his face from chin to brim. I’ve decided that while the news is important, it’s also important to remember that the human race and spirit is still alive and well. We are still creating the reality that our children are going to live in…EACH ONE of us is someone’s walking heart. I’ve been touched with so many stories, so much kindness, and such amazing children, husband, family and friends. I choose to make that my new daily forecast!

Speaking of news, I have great news. So far, I am considered a match for Gavin. All test results have to go in front of a donor review board for final review, but the doctors think that there should be no surprises. I am so excited to give him this kidney. Throughout my pregnancy, throughout this year and throughout Gav’s life, I have felt so helpless to control all that has happened. To not be able to fix your child is a horrible reality. To go to a doctor’s office and not have them be able to tell you how they are going to fix him is excruciating. But now, I finally can do something…now part of me will forever be part of him (at least for the next 10-20 yrs.) Donate life!

I am also glad that I am not the one in the waiting room when they are taking my spouse and child back. I actually think that Jay is going to have the hardest time during transplant. I’ve been having some anxiety over the possibility of rejection, but am working on taming that beast!

We go in for some tests next week to see what if any surgical work needs to be done on Gav before transplant. If there is a surgery, it will be another 2-6 month wait before transplant. From what I have seen, I do believe that we will have one more surgery. At this point, I am just trying to brace myself for the coming months. No matter what happens, we need to continue on and have the faith at a chance for a somewhat normal life – which includes no more 10 hours of dialysis and feeding tubes and alarms and watching Gav go through so so much.

Gav has turned back into my vomit volcano and they are testing him for allergies to egg protein. Not that Gav eats eggs(or anything really for that matter), but I do. He gets egg protein through my breast milk. Now I have to cut eggs out of my diet completely. Unfortunately, pretty much everything has eggs, so it’s like tip toeing around the refrigerator to find things to eat.

The heat is wearing on him and we’ve been having some feeding tube issues. I can’t wait until post transplant to take him swimming and even give him a real bath. He loves kicking his little dangled legs into Lauren’s tubbie so I think he is going to be a little water bug. I can’t wait to build sandcastles, make mud pits, go camping and scoop up lightning bugs and not have every room filled with a jumbo sized bottle of hand sanitizer! There is just so much to look forward to! Transplant can’t come soon enough, it has invaded my every thought!

Lauren has a little cold as well so we have been laying low. I’ve started to try to write her several stories for when I am gone (we read and tell each other stories a lot). But now I am realizing that she won’t be interested in them unless I can figure out a way to illustrate them, since she loves the illustrations the best! So that will have to wait and I will have to hit up scholastic books (my mom keeps telling me to simplify and for some reason my simple turns into complex quickly)! My neighbor taught me a trick though, to wrap the books with gift wrap so Lauren gets to open them. Opening the gift wrapped books really makes her look forward to bedtime and will ease the fact that I am not there to snuggle up with her when I will be in the hospital. I’ll have to find a good hiding spot for the gift wrapped books, since she is such a little sleuth! I’ve started to work on craft projects to keep her busy and fun things here or there for sad times.

She is so funny, she found one of those baby toy remotes and she started chasing Gavin around and pressing the buttons. When I asked her what she was doing she said that “Gavin was her action toy”. I thought, hm-mm, a remote controlled brother, every three year olds dream! Anyway, Yeah for summer! Maybe I should try that remote control out on her (: Sweet dreams!

Jill

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Family Illnesses…Jill’s Organ Match Workup Started

It’s been a ride this week with two others in my family losing organs and me getting tested to be Gavin’s match. My younger sister had her gallbladder removed and is recovering and my mom had her appendix rupture and a terrible infection. I am happy to report that she is starting to get on the mend as well. In the midst of this insanity, I met with the transplant team to start my work up as the donor. (Jay is not a blood match.) I had five separate blood draws a half an hour apart, xray, EKG and a CT. It’s weird having so much done, it made me feel like I could some how more relate to what Gav goes through in pretty much a normal day for him. We have discovered Emla cream which numbs his arms for the blood draw. I just got it prescribed for him. I wish that someone would have suggested this a long time ago and saved him the psychological torture of blood draws!

So far all looks good for me to be his donor, we are just waiting on the final review from the CT scan. It seems like transplant is right around the corner, and now that it’s here, we have so much to plan. It almost feels like it popped out from no where! They told us to start making a list of things we will need help with: taking Lauren on adventures for us, cutting the grass, mail, dinners, etc… since Jay will be with Gav mostly and I will be too sore. I think the hardest part in all this is that I won’t be able to hold the kids for a month! I have already started preparing Lauren for that, and let me tell you she was not to excited to hear that part of it! That’s our medical update for now.

Getting to the fun little life details, Gav is starting to wave, back to front not side to side so it’s quite adorable seeing his little floppy hand wave when he sees a familiar face. He is quite the lover, hence his nickname “Romeo”, and has taken to giving some sweet little pecks, especially to Lulu. He is tearing up the floor and now is simply irate if you try to pick him up when he is busy. He has baby missions that supersede your desire to carry him to where you would like him to be. He adores standing by the window looking for birds, dogs or passerbys and is starting to be able to bear weight on his legs for extended periods of time. He enjoys singing into microphones and of course, is still number one obsessed with balls! He is starting to eat a little more food (thanks to Aunt Pat’s banana bread) which is refreshing. I so worry about him losing his skills, but hopefully they will stay with him since he did eat for some time.

Lulu is now switching careers, her second as to date. She has decided to step from the people medical field and become a veterinarian. She told me that when I grow up I should be one too, so that I could help her. I told her it would be awhile until I grew up, but I would take it into consideration. Last week she got her first splinter, she rushed in and told me she was worried about her “blood circulation”. After removing the splinter, we had to nap with an elevated pointer finger on the pillow next to her to make sure that it was secure from all future injuries.

She is getting into story telling, with a couple of lead in words such as, “FYI” – which is Jay’s favorite. I am more apt to hear, “Did I tell you this already?” and then the story comes.

We had our community wide rummage sale this week so I found two great finds…a snow blower (good bye shovel!) and a battery three wheeler for Lauren. She zips around the neighborhood on her little pink “motorcycle” as she says, and loves every minute of it! Lauren is a rummage sale junkie, and now when she sees people cleaning out their garages, she asks if it’s a rummage sale and if we could please go!

Those are some tidbits of here and theres…life is good. We had a great mothers day. My two kids are the greatest things on earth to me – so to get a homemade card with scribbles and google eyes randomly everywhere was the best! We are enjoying the weather and ready to start our daily tradition of walking to the park back up! Hope this finds you and and all who you love well!

Jill

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Never, Never, Never Give up

Never, Never, Never Give up. The last hospital trip was quite wearing. I have to say when they couldn’t tell me what was wrong with him, I started to panic…it was like everyday was a dizzy day. As a parent, when something is wrong with your child, you become quite irrational, I was ready to just leave the hospital at any cost (denial, denial), luckily, Jay had the car so there was no escape vehicle! There was a lot of speculation of what the cause was, and some were pretty terrifying thoughts (always a reminder of how blessed we really are), so I am not going to revisit them. Also sleeping on a blow up cot (yes blow up cot, I am looking forward to the new hospital) in a hospital room for about a week while hauling a 19 lb baby around does not do much for easing tension!

Its been awhile since my last update and things here, I am happy to report, are going very very well. Gav’s infection is gone for the most part, they think that it was an allergic reaction, quite the allergic reaction. The allergist and nephrolgist said they had never seen the esonophils so high ever in an adult or child. We will have to go in for further testing, but for now are happy that it has pretty much resolved itself!

Gav is such a champ, he is all over the place now that he’s got his crawling down (you can check him out self applauding his own crawling skills.) I have to be a little more careful where I walk because all of the sudden I look down and there are his baby brown eye looking straight up at me. He hits his buddha belly when you ask him where it is, and can give a good belly zerbert and nose honk when asked and is quite into pointing his finger, at everything. He is now obsessed with dogs and cries when he must part with them. Hes at that fun age where as a parent they start communicating back and if you tell them to go get a toy or come back they understand and do (too bad that is not the case with selective hearing three yr olds). I remember it well when Lauren was at that stage and now Gav, its so amazing how well they understand the language and how smart they are for being so little.

Lauren is up to pretty much everything. She got her dance recital costume today so she tried it on and couldn’t quite keep her happy feet from tappin away on the driveway! We found her a bike (she named it Petunia or sometimes Hannah) that she is tearing through the neighborhood on. We read the Owen and Mzee story so she is quite smitten with hippos and does a mean tortoise impression (cute story about a hippo and tortoise from the Tsunami). She likes telling me what she “is into” and this week it is craft projects, hippos and drumsticks. She informed me that she said hi to the monkeys, because she can speak monkey (oh oh ahh ahh in case you would like to say hi to them as well in monkey-speak per Lulu) but didn’t quite now how to talk to the giraffe, so she just waved this week at the zoo.

We had our first appt with transplant this week and it went well, we are approaching it fast. I should know more about our blood match ups this coming Monday and then its a whole day of every test known to man to finish the work up. The end is in sight, its like a beautiful sunset waiting on the horizon!

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Gavin Discharged…Cause of Illness Still a Mystery

We got home Saturday evening with Gavin, his problems are still a mystery…they believe that they have ruled out leukemia and cancer (thank god!) but they are no further on figuring out what is wrong. So instead of keeping us holed up in the cell, I mean hospital room, they have discharged us in hopes that he gets better while they continue to investigate and wait to get some lab results back.

We are all exhausted and a little scared, but it feels good to go outside and feel the breeze and see the kids play with each other. Hopefully we will figure this out soon!

Jill