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!


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!


A Cozy Thank You to “Angel Student Nurses” and Lunch Box Surprise

Florence Nightingale Pledge

I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will old in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.

We would like to offer a glowing and warm thank you to all of the wonderfully kind and open-hearted Student Nurses from Carroll College and their fellow Carroll College Classmates who, either by direct donation to canisters or by donating some lunch room magic, via their “meal ticket points” raised a truly amazing $4,165.00 for sweet baby Gavin’s campaign fund.

An especially heart-felt thank you to Student Nursing Association President and Intervarsity Executive Team Leader, Lindsey Berndt and Student Nurse, Melissa Flood; together the inspiration in animating baby Gavin’s special narrative.

Our gratitude also extends to the compassionate Carroll College Faculty and Administration who kindly approved this project.

Thank you all so very much for connecting the love within you to something outside of you – to celebrating the joy and wonder that is sweet baby Gavin. Because of you this little sprite will continue to race the wind…For your generous empathy we are forever grateful!

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!