Still Recovering from Postponement…Waiting for New Transplant Date.

I can’t quite say I have recovered yet, I like what Mary said, rubber band moments to see how far you can stretch before you snap. As I look at the blinking cursor on the screen I just have to shake my head because I wonder if I already have snapped. I can’t seem to get myself picked up this time. Gav seems like he is starting to get into another episode of his. He is vomiting up to five times a day now, mostly at night and in the morning. It never gets less scary to hear the low gurgle in the middle of the night, knowing that it’s about to come, that his tube is going to be dangling out his nostril and his throat, and that at the end of watching this horrific vomiting event, you are going to have to shove it right back down again. It just seems so unnecessarily cruel.

During the day he seems to do quite well, still interested and alert and ready for action. We went to the zoo the other day, since it seemed like our walls were closing in at home. He is just in love with the animals, pointing to one and then the other. Absolutely fascinated with the zoo train. He is starting to add some more words, up and duck and is trying hard to make the sound of a cow, although it comes out more as a mmm then a moo. They ended up not casting him, but put a small brace on his wrist for optimally four wks, but the ortho said, in reality it will prob be two that he will tolerate it for. Gav takes a special form of dislike to it and tries his hardest to rip it of, but thankfully is unsuccessful most of the time.

Both kids enjoyed spending time with Princess Julie”anna” (Lauren renamed her) aka cousin Julie who flew all the way up here to be by my side for the non existent transplant(ugh). I think she was sent here for another purpose, and that was to give me strength to keep fighting for Gavin when in reality, I wanted to stay holed up in bed. She pushed me to push for answers and take control of his situation, and I believe that he is better for it! There are no words that I can find that express how grateful we are to you for taking time for us!

Lauren is feeling a good rush. Apparently, she is under the assumption that she is quite wealthy, since she has eight coins now (it’s as if she won the lotto), she would like me to “buy her a farm already”. Thanks to her little neighbor friend (who is almost four) she is now obsessed with the idea of becoming a teenager. She is getting into high school musical and just loves the thought of anything that is considered “big teenager”. She has even gotten a new teenage walk that she likes to do and is sure to point out all the moments when she “looks like a teenager” (and she is sure that everyone thinks that she already is). I told her not to grow up so fast, but it is quite amusing. When you are young, you want to be older and when you are older you want to be younger. She also thinks our seven year old neighbor is an adult because he helps cut the grass, so that gives you some insight.

Thanks for the inspiring words, we find ourselves checking his sight often for inspiration…we are lucky, may we continue to be lucky and may we get a new transplant date ASAP so we can stay sane! As my mom would always quote us, “this too shall pass” and “that which does not kill you will make you stronger!”

Jill

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Gavy’s Transplant Has Been Postponed…Needs Additional Medical Testing

The rain is befitting, since this is not the journal I thought I would be writing tonight…we got a call today canceling transplant, so we did what anyone would do, we ordered Chinese food. The fortune cookie said it’s easy to swim, it’s hard to stay afloat…we are trying not to drown, but like my brother said, “life is beautiful, but it is wicked today”.

They need to do another scope and biopsy of his GI to further determine the cause of his high level of eosinophils prior to transplant. I know it’s what is best for him, but there is an emptiness that I can’t help but feel, it’s like Christmas was canceled this year…and in addition to this, Gavin will also be sporting a new cast as of tomorrow, he fractured his left wrist (unbelievable, this poor baby)…I think Jay and I are going to just fall into each other tonight and just try to make it past Thursday and stay sane.

Hopefully we will figure this out and transplant will be the better for it…I can’t help but fear waiting, although Gav is doing good now, I see how fast things change for him, it’s like they just pulled the finish line and now the end is around some unknown corner with who knows what awaiting us…I rocked him a little longer today, and kissed Lulu a little more, may the end of this madness be near! I’m slightly numb.

Jill

Gavy May Have Auto Immune Disease

That’s why they call it the “art of medicine”, every doctor does the best they can to create their masterpiece, but in juxtaposition, that is why it is called “a practice”, because it is not perfect…

We got a call letting us know that we needed to bring Gav back on Monday to meet with another specialist. So much for the cheery message saying all was good. They need to test him for several other things, but they are afraid that he may have an auto immune disease…what it all entails we will see, but the stress is unbearable at this point! I just pray its something that they are comfortable to transplant into, and that this turns out to be a precaution and not a reality! I guess it is serendipity that they got the results back in advance, it’s always better to be prepared for everything!

We had a wonderful last weekend, it hit me today that we only have four more days of dialysis, this is mind boggling. We took advantage of my brother, his wife and son Sam flying in and took them on a whirlwind tour. It kept our minds busy and in a good place. We went to the zoo of course and Lauren gave us a pretty professional lay out of the place, and capped it off with a good old fashion Dad BBQ. On Saturday we hit the pumpkin farm since we know we won’t be able to go there in October. The kids painted them and loved riding on the tractor. Then Uncle Lance and Joanna came and kept these two kiddos busy so we could start our crazy cleaning project. We are trying to get it all done so we have a nice clean home for Gav to come back to.

Thanks for all the sweet messages, I look forward to reading them to Gavin, he is really into reading right now just like his sissy…I have to finish the kitchen floor (very glamorous)

Take Care, Jill

Gav Out of Surgery…Hopeful for Discharge Today…For Now, Transplant Date is Still On!

Gav is out of surgery, a little groggy still, his throat is still really sore from the vent and they had to do two inserts of the needle for his liver biopsy, the other aspects went off without a hitch. There was some bleeding into his pd cath,, but his dialysis nurses came at 9 at night (seriously love those women) to help him out with that. He is still a little queasy, but we hope that he will be discharged today and we can all go home…we have plenty to do, tomorrow is Lauren’s snack day at school and she said that she wants something “fab”, so hopefully the doctors can understand that (j/k).

We should have the results in 2-3 days from the liver biopsy, but we know nothing new now…they don’t believe this in anyway will delay transplant, so that is a huge relief!!!!

Its our first stay at the new children’s hospital in Madison, its beautiful, no more blow up beds, they have a recliner in each room and a futon and they are about triple, if not four times the size they used to be…putting the kids first, it’s really nice…it makes the hospital stay way less miserable!

Hope all is well, one surgery done, and getting ready for the big one next week! Thanks for the prayers!

Gavy Has Surgery Today at 3:30, Please Pray for Him.

You know how you find a small piece of thread dangling out from your clothes and you go to tug it off and it all comes unraveled at the seams…I feel like that tightly wound spool of thread, slowly unraveling until the spindle drops on the floor. You’ll have to forgive my lack of inspiration today, while I know that we are lucky, I can’t help but lose perspective the night before surgery.

The enzymes have not disappeared and I had a long talk with Gavin that he is only allowed one organ here and that he is in charge of making sure everything else is in working order. I’m scared to what they will find. I feel like no matter what it is, it won’t be good. His biopsy and surgery are scheduled for 3:30 today. Its supposed to be a simple day procedure. I love that word in there, simple…IV, ventilation, no food no drink, drugs, needles, incisions…simple. Nothing with Gavin is ever simple.

The bell is ringing once again, fight baby fight, go Gavy go! May God be with you as we sit by your side…

Jill

Knowing Your Kids Quirks…Gav’s Liver Enzymes Up, Pray for Him.

I can’t for the life of me make cook-and-serve pudding and that the word ‘moist’ and pink/red color combos (exception v-day and kids apparel) repulse me. It’s these type of oddities that concern me while I am going to be stuck in bed recovering…not my own neurotic ones (unless my hospital gown is pink/red), but those of my kids. The ones that you adapt to as a mother without even realizing that you are doing it…the rituals and routines that you make up to suit your kids that seem normal to you, but odd to others…being out those six weeks for recovery, that is what will be the hardest. You can’t just tell someone their oddities, you just know them (if that makes sense) and it’s missing the new ones that form, that I will miss so much.

Like Lauren the other day, drilled into me for never taking her parachuting (oh all the ways I have failed her)… and I know that it’s not something that I can explain that many four yr olds have not gone parachuting, “no mommy hasn’t pushed you out of a plane with only nylon pop tent on your back (yet)…”, it’s something that I just say, “maybe we can do that next week” and pray that next week she forgets about it, and if she doesn’t, I tell her that they are all closed for the season, or that all the toys in the department store are for kids 6 years and older today and today only and so instead she makes a list for me, or that Lauren stalks the neighbor kids and is getting hesitant to ride Petunia because she had an “almost” fall into the grass…that Gav likes to eat chalk and spits out almost all real solid foods, but is particularly fond of green things and flavored breads and most recently is diggin’ raspberries and strawberries. That he only likes to wear his dog shoes, but he hates socks…there are just a million little things that they do that you only know…it’s funny how quirks are some of the greatest things about people…it’s their peculiarities that make them interesting.

Gavin is going to have a surgery done on the 18th and with it being so close to transplant it’s just another obstacle from our ultimate goal (scary)…then today we went in and his liver enzymes are elevated (terrifying). We don’t know the cause and this is VERY concerning. We meet with another “ologist” on Tuesday and they are going to recheck his levels on Monday to see if there are any changes. Pray that these enzymes go away. He’s been throwing up so much now at night, in the middle of the night last night Lauren said that even she is starting to get concerned about him and feel bad for him. All these things need to be remedied in order to make his transplant date of September 27th fall into place. I don’t think I can handle anything standing in the way of transplant. I won’t be happy, I won’t feel like this is really happening until I am laying on the operating table, there are always just too many variables. I have come to terms that this is the path that he must take in his life, now I just want to execute the plan and get him healthy. I am no longer scared or hesitant, but ready to see him feeling strong for the first time in his life!

Its been a rough, sad week, we try to practice mental toughness in this house, but this week the sky came falling down. We lost our very dear sweet baby Rory this week. He is our infant neighbor and will be forever in our hearts and thoughts and his remaining family hugged firmly in our arms. If you look closely, you can see his halo glowing out there in the distance as God rocks him to sleep…we love you and we miss you! May your prayers be heard and may you cherish all that you have!

Jill

Getting Prepared for Transplant…Please Write to Gavy Before Transplant!

Well, we are in a hurry to get nothing done. We have a long “honey-do” list, but it just seems like it just keeps growing and the check offs aren’t coming! Gav is doing pretty good. He’s vomiting quite a bit again at night, but we are increasing his epogen and I think that is what he is allergic to. Unfortunately for him, we can’t stop, because then he would need a blood transfusion before transplant and that would really complicate transplant.

We just can’t wait for the 27th, everyday that goes by, we do a little happy dance! Gav is starting to say “no” and “ouch” to pretty much everything. He’s starting to become a little more interested in signs, and is signing “more” now, and we are working on animals and animal noises. We went to the zoo the other day and he loved it. The monkeys were his particular favorite, along with pretty much every other animal that we saw. Gavy was doing his signature joint hand/foot clapping, which signifies his ultimate baby happiness moment!

He is getting so much stronger and is starting to walk with his walker on his own. He takes about a good fifteen steps now and gets tuckered out and wants his mama, but he is getting ready to try and stand on his own as well. Of course I think this is the time. They say that he will feel so much better after transplant that it only takes him around three days (barring no complications) to want to take on the world. I am a little nervous because he is going to have a blood draw cath from his neck, that comes out of his stomach. I hate those lines, anything that we are responsible for that could cause him to bleed out, just freaks me out, so I am getting increasingly anal on trying to find ways to uber-organize our lives so Jay isn’t so overwhelmed (which I have to say I am failing miserably at)!

Lauren just started her 4K on Thursday, which is good since she wants to become a Polly Pocket someday (I told her Polly Pockets have their doctorate degree, so she’s ready for the educational haul). She came home spinning and clapping and saying that she met a new friend already. I think that will be great for her, a little structure and out for a couple of hours a day in the midst of this chaos. It’s already coming in handy because she is coaching me with my balance ball exercises, she said she can help, just like her teacher (look up to the sky, follow the teacher, you’re not doing it right mom… it’s an interesting work out with her). We watched a movie (Lauren’s ultimate indulgence), Mary Poppins, and she decided that she also needed a red umbrella, “so I could fly away when I didn’t like your attitude to Grams house.” Sometimes, seriously, I can’t even believe what she comes out with.

Jay is super excited now that football started, and has joined about 168 fantasy leagues. He is also very tied up in the baseball chase between the Cubs and Brewers, which I hear about everyday, I think I may be able to commentate about it on ESPN. He’s a proud Papa now that Lulu’s in school, he came back early that day to see her when she got out, so he brought the spinning little school girl home. He is getting used to my new hair, I cut off ten inches and donated it to locks for love. We have to get the minivan fixed again because it’s making a monstrous noise, which I can not tune out by turning on the stereo(insert a good kick to the minivan here). Car repairs are high on the list of “strong dislikes”…the “hate” word has been ruled out in the house now, so we can only strongly dislike things…

Jay and I would hope that if you’ve been moved by Gavin’s story through his website, please write him a special note in his guestbook before his transplant surgery set for September 27, 2007. We will print out each one and read them to him the night before his surgery, so he knows who is all praying for him and how he has touched their lives or encouraging words, whatever moves you…for now, we are putting one foot in front of another, and awaiting another miracle! May you see beauty in your day!

Jill