Jill's Journal

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Ho! Ho! Ho! — Our Giggly Gavs Can’t Wait for Christmas

I regret it already; I heard we are going to get like 7 inches of snowfall, go figure. But it will be nice to have a white Christmas. Gavin giggles hysterically when we say ho, ho, ho… So you can only imagine how often that is pulled out in this house! It is so cute, if you say it behind him; he actually tries so hard to see you that he just tips right over. Or if you are Lauren, you run continuous laps around him while shouting — it looks like a cat trying to follow a ball. It’s pretty adorable. He had his physical therapy again the other day; we are having some regression with the rolling, so we have to start working on that again. They think that it may be a little more uncomfortable for him because he has his dialysis fluid in there at all times, so maybe a little squishy belly. On the up side he is starting to support his own weight when sitting and is moving and reaching without hesitation.

Post surgery he has so many opinions that the instant that he doesn’t like something he is giving out scoldings. Gavs is so used to being in happy mode at all times, so he looks at you in such shock when you try to make him do something. Those big brown eyes give you the “hey, what is this all about?” He and Lauren went to get Christmas lights yesterday and they are both in love with those dancing holiday characters. We must have sat in the aisle (pressing every button at the same time mind you, I am sure the employees loved us) for an hour. Lauren was dancing away and Gav was shaking his little happy hands. The kids love having the big tree (thanks Traci) up this year and it sure feels more like Christmas. Last year I was in the hospital until right before Christmas so it feels good to have the building anticipation and watch Lauren’s growing fascination and excitement! And how do I love Santa’s naughty or nice list – we are all on our most pristine behavior this month 🙂 Its going to be a great holiday!

[mygal=gavinandlauren]

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Gavin is doing wonderful – Getting ready for Christmas

“You never know how heavy a burden you carry until its lifted off of you” – how true that is. Now that we are home, and Gavin is doing wonderful, wonderful, wonderful we can all live life as it should be lived. Its been such a relief to see him bounce back so quickly and better than he was before. We had a doctors apt today and they thought he looked great! In retrospect, I wonder if it was really colds or backlash to the problems that they operated on that was making him so uncomfortable, maybe a combo who knows. Either way he is just so full of life again. He is cooing and moving and eating like a champ and it couldn’t be more fun to watch his curious little mind at work. He is so interested in everything! Between him and Lauren they get like a million kisses a day! It is so fun to see him and Lauren light up at all the Christmas decorations! Lauren went to sleep last night with a candy cane under her pillow and dreams of Santa coming to her house. I can’t express enough how nice it is to be together again as a family, to have my daughter, son and husband together again, and happy and healthy and out of the hospital. (Bummer that Jay had to go back to work after the holiday weekend!) This is the best holiday gift that I could get! Hope this finds you all enjoying the super nice weather outside and spending it with those you love! I must admit I am looking somewhat forward to a little snow to get more into the spirit, but I am sure I will regret saying that. 🙂 I think Santa is coming to the Mills next week, so I think that Gavs is going to get his first glimpse at the big red man and Lauren will be elated, he comes in on horses, what could make Lauren happier than that?

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We’re home – all is calm!

What a great day, since leaving the hospital life has been full of good surprises. Gavin is eating like a champ, polishing off one—get this—and a half jars of chicken and rice (his new favorite) for dinner, so I took a picture of him so you can see his delight. The nurse called his little fat creases- bracelets…we need more bracelets or maybe we should call his little rolls his bling, because they are worth their weight in gold…so its wonderful!

The kids are both settled back at home and are so much more relaxed—it’s wonderful. I officially left today for two hours and Gav was excited to see the return of the juice sippy cup. Jay said that he picked it up with both his hands and stuck it in his mouth.

After rereading the hospital journals, I realized that I said that the doctor can’t help. I just want to clarify that his doctors have been wonderful, and I know if they could, they would fix him…sometimes I say things in frustration, but I just wanted to make sure I clarified, that although they can’t fix his problem, they are the only reason that he is alive, so I appreciate all they do!

Well, we are all still in our turkey coma, but hopefully tomorrow we will get out more and enjoy this beautiful weather! Lauren decorated the back window with some window paint to start getting the kids into the holiday spirit and we put up little trees in both their rooms. Gav is into the lights and Lauren needs hers on now to fall asleep.

I added a video of Gavin and his cousin, Annalyse, when she came to see her cousin in the hospital. Gav loves her (and baby dolls). I think that he is somewhat pleased he is no longer the low man on the totem pole, but as you can see, he is all about getting her hair, and hands on this video (and in this one he doesn’t take her nuk, but loves grabbing her nuk away). Hope all is well and you can all enjoy your good weekend! We can smile and relax—- all is calm!

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Day Three…Gavin’s looking better

It’s day 3 and things are looking a little brighter, Gav is up and moving and seems to be doing well without his pain meds. He looks normal again so I am starting to relax some (okay so there is no such thing as relaxing in a hospital, but feel less anxiety for sure). He played with his cousin Annalyse today in the hospital crib and managed to steal her nuk right out of her mouth. You would have thought that he won a gold medal in successfully swiping the nuk because he was grinning from ear to ear, he just kept taking it out and putting it back in – Annalyse on the other hand did not appreciate the gesture!

Thanks Julie for calling and keeping me optimistic (I hope that the small fire has been extinguished), sometimes you just need a little nudge to keep going. Jay always tells me that it’s a marathon, not a sprint, at first I thought it was catchy, but now it drives me somewhat crazy, but it’s 100% true. Can’t let anything knock you down too long. I heard a quote, life is not about how many breaths you take but how many moments take your breath away. He does take my breath away. I could just kiss his dialysis machine and whoever invented it. It gives him life, all this, all these battles are so that he can live, what an innate survival instinct babies come with—now it’s our job to make sure that his life and world are worth it! Hope you are all having fun, still no expected date of release, but we will see, I hope not too much longer! Hugs, Jill

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Gavin will be in the hospital longer…Reminded of how sick he is today

Day 2 at the hospital and things are looking a little more complicated than we hoped. They think that his right kidney may have gotten bruised (which is apparently common) so we may be in here a little longer than my overly optimistic prediction of two days. Today he woke up and looked like the stay puff marshmallow man so we just hooked him back up to his machine.

Sometimes because he looks so normal, you play this mind game with yourself, maybe the doctors are wrong, maybe his kidneys started to work, and with every surgery, maybe this will be what fixes everything, and it will all go back to normal—-but seeing him today made me realize all over again how sick he is.

I know that I have to come to terms with all this, and for the most part, most days I am, but it just keeps happening. It’s still happening, over and over, and when your kid is sick, you just can’t function. Even when Lauren is sick, it’s like the world stops until she is better. And THIS is like a whole new level of sick. There are always like a million doctors around and none of them can do a darn thing to make him better, to fix him. I can’t wait until this hospital stay is over, and we get our happy, giggly, curious baby boy back. Time stands still here, it’s like it sucks out the world and you exist in this new hospital world, it’s weird.

Anyway, I am going to get back to Gavs, hopefully I will find some time to sneak away and give some more updates. Your comments and guestbook entries really help liven up our spirits. It helps to know there are an army of people out there thinking of him and wishing him well. I think Charlie Brown’s Thanksgiving is on, so Gavs may get his first dose of Charlie Brown!

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Eve of Gavin’s Second Surgery

The eve before the second surgery and things are just moving in slow motion. Gav can’t sleep tonight, he still seems pretty uncomfortable so hopefully tomorrow will give him some relief. Lauren can sense that things are happening and is very distressed by the littlest things, however she is Dr. Lauren and has diagnosed us all with the stethoscope we brought back from his first visit. I think Jay and I are just wishing it was tomorrow at 11 so Gav would be through this hurdle. I hope that they are able to get this all taken care of and we won’t have to be back there until we start gearing up for his kidney transplant. We were told about what a beautiful job my aunt Ceil and cousin Jodi did for his fund raiser at Cafe Latte – thank you, thank you, thank you and thanks to all those who sang/performed.

We have so much to be thankful for: great family, friends, strangers who are offering their prayers and good wishes. Good doctors that care about their patients and a good education to think for ourselves, a nice house to look forward to come home to, sweet neighbors. Gavin’s disease at times can take over our life, my doctor said there are times that it will seem like a nightmare, and there is definitely that, but it also makes you realize how lucky you are. How many things that you have that you just take for granted, what a miracle your body is, how life should be lived each day, how forever you have your family, to laugh with your kids and make them feel like they are the best thing on earth and boost their self confidence through the roof. To let go of the little stuff and worry less about what others think and become more secure in what you think, to do good to others – somebody always has it worse and to always be kind. We are lucky, so very lucky! May Gavin’s luck continue tomorrow (its gotta, he’s got the luck of the Irish in his blood) and lets hope for a quick and painless recovery! We love you Lulu and Gavs to the moon and back! Just Breathe (thanks Glenda) that will be my mantra tomorrow.

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Gavin Doing Great Post Surgery

Hi all!

Gavin is doing great, he is flirting with all the nurses so is getting extra special attention (no one can believe those cheeks and that smile!) He ate like a horse this morning so that was really good and they are just monitoring his oxygen. We thought about removing the IV but since they have to go back in on Sunday they are just going to keep it in (we will be here, no early release, bummer). He gets another night off of dialysis to help him heal some and then he will start up again tomorrow night and Saturday before they go in again.

It’s amazing how when you are in that room your fight instinct just kicks in. We are all feeling strong, thanks so much for always being there to support us and him, it’s because we have such a wonderful support system that we can do this! Lauren has informed me that the manatee is a sea cow and is a little peeved mommy isn’t there at bed time so is making daddy read four stories instead of 2! Thanks mom, dad and T for spoiling her rotten while we are here! Keep up the good thoughts!