Back Home from California…Big Decisions to Make

Plane rides and toddler/infants does not equal flying the friendly skies, but we did it, and we learned a lot. Jane Godall said that if we only look at life from our perspective it’s like trying to see the ocean through a rolled up newspaper (something along those lines, I am not sure where my book is.)

We got a new perspective on Gav’s case and met with the guru of pediatric transplants who has since retired at Stanford. We have a lot of thinking to do and a lot of questions, but we better get a move on, since Gav is putting on weight quite rapidly! He broke out of 20 lbs and is at 21 lbs. He has also decided he is too sophisticated for sippy cups and likes open adult glasses with straws, and pretty much anything that anyone else is drinking.

Lauren loved the “pom pom” trees (or to the rest of us, palm trees) and the pool (her utopia). Those were the top two…she also told me that she does not think that I am funny anymore so I should stop teasing her (I may or may not have had her looking for care bears on the plane, but who knows it could have happened, anything could have happened) she was not amused. She also said that she loved the weather until Jay told her it’s like this all year round. Then she started to cry for all the boys and girls in CA because if there was no snow, that must mean there is no Santa for them. Four year old girls are emotional, they should write a heads up manual per age. We set her straight, and she did recover, but it was quite devastating there for a brief period of time. We had a lay over each way in Denver and Lauren called it Calarada like “o’s” don’t exist…we found it adorable so of course we made her say it like a million times. We lucked out and saw fireworks over the capital on our homecoming (which we of course told her, were set off for her and Gav).

Gav did very well, except for the fact that some people who sit in economy seating still think it’s okay to recline their seats (it’s not) and he may or may not have been able to grab a few fistfuls of the so aforementioned passenger’s hair “on accident” when this gentleman was sitting on my lap (I mean reclined in front of me). Gav is into hats right now and pointing. So he really doesn’t care for hats that fit him, just other people’s. Maybe it’s actually a way for him to tease other people as they walk around with hat hair and he’s all cute with this oversized lid on his head. Gav is a pointing machine and really likes to tell you what he wants. When he gets really happy he claps his little feet together! He did really well on the plane, they both did, for that matter, a little rough on the final leg(ok, way rough), but if it would have been socially acceptable for a thirty year old to throw a temper tantrum, I may have as well…it was a touch exhausting.

So exhausting that for the first time ever in Jay’s life he went to bed without knowing if the Cubs had won or lost. Stanford and CA were beautiful! It was so amazing to walk to the park out there and basically be surrounded by a flower shop. From a wanna be
gardener, they have amazing flowers out there. (Tragically, I don’t think they have my picture by a register saying don’t sell flowers to this woman because many have tried and just not survived.) It was a great trip, and it was just nice to know that we accomplished it with like 8 bags of luggage for four days, but a lot of hard work and planning and we made it out there with everything that we needed.

I think that we learned so much that will come in handy with Gav’s transplant, and what to expect. I guess I had figured that we had been through the worst of it, but it seems now that may lay ahead…hopefully we will find some reserve strength in here somewhere to plow through it and there will be some angel floating above Gav, since there is no other acceptable option. The first words out of their mouths were that there are no guarantees. “I don’t buy anything without a guarantee,” I told them. And continued to let them know that they will have to work on that…humor went unappreciated again (they however, were not four).

We’ve given ourselves a week to decipher our options, about what we want to do, where we want to go. I wish I could have a conference call with God and all his doctors. How are you supposed to make this kind of decision? We are leaning strongly one way for a strong fifteen seconds, and then the other the next. Regardless, it’s so good to be home and back to life at the house. Sometimes you forget how good you have it, but there truly is nothing like coming home! Still a little heady, so I am not going to go into specifics at this point, but we should know more soon!

Jill

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Whose Baby Is This? Gavy Is An Eating, Talking, and Climbing Machine!

Whose baby is this? My kitchen floor looks like my shirts…there are food stains everywhere, from none other than Gavin. It is amazing, we are going on the second day of this and I still can’t believe it, Gavin is feeling better and is EATING, actual real people food, chewing, eating and SWALLOWING it! From peanut butter, cottage cheese, bread and butter, noodles…he actually ripped the hot dog out of Lauren’s hand today at the Farmers Market and ate the bun. He also is going up and DOWN a whole flight of stairs…I think I am in shock. Gavy’s transformation is like magic… “Boop”, I’m better and I can say the word “no”, and sign the word “fish” and climb stairs and eat—-we are treading lightly from one miracle to another! I think that I have to re hinge my jaw, because just typing it, I still drop jaw!

Lauren and I have checked out a French teaching CD and are learning to speak “Madeline”. I can now tell you the “wee wee” is actually “oui oui” and she officially can say my name is, hello, good bye, please and thank you about 25% of the time…Jay is convinced that I should be teaching her Spanish, but seeing how I don’t speak either, there is little I can actually do but learn with her and promise her that this will come in handy when she is thirteen and doesn’t want me to understand what she is talking to her friends about on the phone!

Lauren waffles from excitement to sadness about going to CA. She doesn’t want to leave her friends (she is somewhat convinced that they MAY move while we are away). Today she came down and said that she packed her bags…she packed a solo Madeline book…Jay asked, “Lauren, what are you going to wear then?” Lauren said, “I packed my head.” I think now I should let her pack for the rest of us, since sometimes I think I’ve lost mine.

It’s funny, we meet with a lot of “medical professionals” and what Jay and I refer to as “ologists” (anyone with a specialty) and I often wonder if they get a class in med school explaining that the parents of sick kids are totally insane (this probably goes for parents in general, because when I used to teach I saw this as well). We may not act like it, you learn to bluff the normalcy, but really you are insane…it’s your kid and your prerogative to think that they are a hilarious genius who may model while they build their career to the presidency, while creating world peace on the side…so we will see how well we can bluff cool calm and collected in CA, we have to pack our heads!

Well, I better stop typing and better start packing (it’s like the oh my, I have so much to do, but I am just frozen because I don’t know where to begin). I think it was Bob Hope that said “I think that I have been to almost as many places as my luggage”, so we have to figure out the necessities for carry ons and leave nothing to chance!

Jill

Gav Has Several Stays in Emergency Room…Just Turning Corner Today

July 3,4, 5, 6th we spent inside the Emergency room for Gavs (luckily each night we got to take him home with us)… I just cringe thinking about it… he got really sick this time, fevers up to 103 on Tylenol, I woke up one morning and I thought that he wasn’t breathing… it was terrifying, just hit home again just how sick he is. Like everything in life, things after awhile become normal, and his disease is just a normal part to him, but to see him so lifeless just laying there was shattering. As I was driving him in I was praying to God to take care of my baby, and basically promised him everything under the sun if he can just grant me this wish! His little arms look like pin cushions but now we found our new “go to” people at the blood lab so that shouldn’t happen again. Six tries for an IV line on him this time, I could hear him screaming in my nightly nightmares.

He just started to turn the corner today, broke his fever and now has a full body rash, took him to urgent care today and they are not concerned about it. As he gets older it seems to be more traumatic. He doesn’t want to be set down still, and I woke up this morning and could barely get up because my back hurts so bad. When he’s in the hospital he just wants me for comfort, and he won’t let me sit or put him down, the only place he feels safe is in my arms. I am glad that I can offer him that, and when it’s your babe reaching up to you, you always find the strength to pick them up.

Lauren got to see her fireworks. Her and Jay laid out and watched the show from our front yard, I was too tired and didn’t make it up for them, always next year! Lauren loved it, you can just see the sheer happiness splash in her brown pool eyes! She has perfected the art of, “just another” before bed to keep awake just a hair past our sanity point. The other night she asked Jay for a glass of water and said, “we kids are a lot of work aren’t we?” Jay said “you’re telling me” and Lauren’s response was, “well, I have to stay hydrated.” With that Jay slid one sleepy foot in front of the other and got her a water, Jay 0 Lauren 1.

Lauren has also started to speak French thanks to Madaline. Today she was telling me in the car, “if my friends ask me if I can play, or if I want gummi worms, I can say ‘wee wee’”. Genius, friends and candy and a little French, can you get more cultured than that?

We are going to be looking at Lucille Packard in CA they do the most pediatric transplants for kids under two and have a very high success rate. Its been an experience, and hopefully all this planning will make for an easy travel. It will be the first time for the kids on a plane, and hauling all his medical stuff with us is going to be a project. We are very happy where we are now, but the CA program does more and has a longer steroid free treatment program that has been done on infants. If we decide to do transplant there, we will be out there for 100 days, but they have a Ronald McDonald house for us to stay in and where there is a will there is a way. Gav will be in the hospital for almost all of it, I will be recovering in some strange place (it will be a longer recovery since it won’t be laparoscopic, kids under 5 do better with the old way of removing the kidney, so that’s what we are going to do), but again, you do what you need to do, and hopefully the sun out there will give off some comfort. There are a lot of loose ends with all of it, but we will do whatever is best for our little man and our little girl. Just looking forward. After this stint in the hospital with Gav there is no more fear, just anticipation to seeing him feel better. It’s kinda like when you are pregnant for the first seven months you are scared for labor and in the end you’d do just about anything to have that baby get out of you.

My brother, his wife and son are in from Oregon so we are busy trying to get some quality time in with them before they leave. There is nothing like family! Take Care and may there be rainbows in your tomorrow! (we really need the rain!)

Jill

Gavs White Cell Count Up Again… Happy Fourth Everyone

I love the fourth of July, it's one of my favorite holidays, I have a small fear that instead of looking up at the fire work display this year we may be seeing the four not so sterile, supposed to be sterile walls of a hospital room; as Gavin is starting to become sick( I hate those walls). I am a little frustrated, it's the same thing, high esonophils with his white blood cells and we can't figure out the culprit. This has come after days and days of high fevers and him vomiting his little naughty feeding tube in the middle of the night so it dangles through his throat and his nose, it's quite horrific. We have come to tell the signs and I said to Jay last Monday, we better hurry and do whatever it is we need to do, because he's going to be sick come week end. It's amazing how well you get to know your own child. I don't want to think about this because it gets me a little too worked up, and there is very little we can do right now seeing as it is 2:56 a.m. and Gav starting vomiting at 2:15 this morning.

Lauren has just now come to the realization that not everyone else has to hook their baby up as we do Gavin. She asked why the neighbors weren't going in to hook up their baby, and then again why my sister wasn't hooking up her baby to her treatment. We told her that Gav's kidneys don't work and the other babies did, and she said that we needed to get a new baby. This time a baby girl (big surprise), and we could call her Serena. I told her scratch the new baby, we'll keep Gav and just get him a new kidney (she begrudging agreed but also wondered if Gav would ever just be a girl-at the very least we should willingly grant this wish for her-mean parents)! She is quite the little beach bug right now. She flits, flutters and flies about collecting sea shells, splashing in the water and playing with the sand toys. Grams has to give her at least an hour's notice of departure, because she just has so much to do. Jay brought in a sample of Gavs fluid last night and took Lauren with him. Low and behold the two of them stumbled upon rhythm and booms so Lauren was finally awake for her first firework display. It was quite the fiasco, but all in all she was delighted! Jay pointed out the capital aglow that night, and Lauren looked at it in awe and and asked if God lived there (oh the irony). It's so fun to get a snap shot into their minds. I love that she asks questions with merciless persistence and tiptoes into laughing fits! We just made her a cardboard play box and she is loving it, Girls only (except for Gavin, Gibson, Payton and Yianni…basically all the boys that she knows)

Lauren would also tell you that, 'Gavin is into balls and dogs” as she talks to complete strangers about that, and that 'his eyes are delighted when he sees her”. No big surprise or change their except that he has become quite the little hot head. We were in Target the other day and I was walking around the toy aisle (Lauren's only consolation for being drug to the store for diapers is to look at every, and I mean every, toy in each aisle, and add to her long birthday wish list of toys, basically anything on the shelf is on the list, she does not discriminate) and we came to the balls, when we moved on, Gavin threw the biggest fit in the store (throwing whole body back, kicking arms, devastated eyes and whaling sobs), it was quite the temper tantrum, but really if we have another ball in this house we could let the Major Leaguers practice here! Forget about talking to him if there is a dog in the picture because he just become transfixed, staring longingly. He is starting to get his cruise on, and has figured out how to get down the stairs safely (Thank goodness, those stairs are a production). He also is interested in putting real food in his mouth, but then spits it out. It makes for clean floors

Jay is happily calling Brewer fans after each win and sulking silently after each loss, it amazes me, the heart of a Cubs fan, they bleed cubbie blue and red with each loss like someone just kicked their shins and ran away (you think they'd be used to it by now, go brewers)! I on the other hand, have come to the startling realization, that I am my mother. I was driving home the other day in my dented green minivan, listening to John Denver with the wind down singing it a touch to loudly and of course out of tune. Anyone who knows my mother knows John Denver and can appreciate that! I accept it happily! Well, I am going to try to get some sleep, seeing how I know that tomorrow will be the endless quest for these esonophils. Hope you all have a fiery fourth! Yeah America, thank you to all those who have given us our freedom and those who continue to fight for ours and our children's tomorrows!