I write this to you from my phone as I sit in Paxton's hospital bed~again.
We were readmitted today. I have nothing. No clothes, tooth brushes, phone chargers ( went and bought it all) because I didn't think we would be here right now and of course we live two hours away. Pax has a couple of things going on with him. One of which is transient synovitis hip(s). Google it because I haven't the strength to explain and the fluid had also retuned to his right lung. We found this out via our post op appointment today. Meanwhile last night we were in our local ER for his inability to bear weight on either leg. It was super scary as I thought he was throwing a clot. Long story short he just got another iv, what's that like 6 in two weeks. I am again snuggling with him in his bed and we are both heartbroken. We have infectious disease, ortho and cardio coming tomorrow. Rumor has it he is going to need that cath after all since the fluid has returned. Guess we will see on the flip side.
My heart is literally shattered. I said good bye to my boys this morning and they expecteded me home tonight and once again I left and didn't come back. They got me for 2 days. That's it. Tonight it's not fair. Tonight my glass is not only not full, that B is empty. I'm angry and sad. I want my boy to stop being a pincushion and I want my older two to have me as a constant in their lives without worrying if they bat an eye that poof I'll be gone. The tears have yet to stop. Not sure that they will until I am tucked safely in my house again. Please pray this is fast. Next week the boys are on spring break and we had a lot of catching up to do. I want that. I want time with them. I want us to be home damnit. Tonight I am not strong, I am not wearing my big girl pants, and focusing on the positive. Tonight, I got nothing....
Thursday, March 29, 2012
I write this to you from my phone as I sit in Paxton's hospital bed~again.
Tuesday, March 27, 2012
Oh hell yah!!!!
We broke out peeps!!! I type this to you from my very own bed!!!
We were discharged last evening. We didn't tell Daddy and walked into the house around 7:30 without him ever knowing. He was beyond surprised! So surprised in fact, that he was chillin in his "man pants" when we walked in so no pictures are able to posted of the Daddy/Pax reunion. ; D
The older two boys were already down for the night which was good because it allowed us to get Pax acclimated. We gave him a shower/bath to keep his incision from being submerged, yet allowed us to wash all of that hospital off of him so much better than the brotha baths he got for two weeks. He stumbled around like a drunken soldier (he is still sooo weak) from room to room checking everything out and playing with his toys. I hovered like the helicopter mom I so am not.
I put him to sleep in his very own bed. Clean sheets and all. He won't let me out of his sight. I laid with him until he was asleep, then snuck out to be in my own bed. By 2 am I was back in his bed. He woke up crying for me and a running I went. My nearly 33 year old hips, those hips destroyed by running, beg of me not to spend another night on my side curled around him. They ache and hurt so badly, but I will ache and hurt until the day I die for that boy. Pax is acclimating. It's not easy. The transition from hospital to home life has affected us both more this time than it ever has before. He was up all night tossing and turning. He cries at the drop of a hat. So do I.
In my mind it was going to be fireworks and huge tada's. Instead, it's been more of a tears and hugs homecoming. Which is better because I am not sure either of us could handle fireworks this go round.
The boys skipped school today to be with us. Then tonight I left Paxton home with Daddy and took the boys to a baseball signing event. I can truly admit, because I am always honest on this blog, that I was in no way ready to be out in public yet. I went because I wanted to spend time with the boys, but any hospital mom can attest to a waiting period that is needed when going from living in a 15 x 15 room to being out in the world, among people, and the fast pace that life these days holds. I wasn't there yet, but I got time with my boys in spite of it and we all know I have been on pins and needles waiting for that.
Each day will get better, the tears will subside and Pax will get stronger. So too, will I. Life doesn't allow us to hibernate for long and just as anything else takes practice, so does getting back to the real world after being absent from it for awhile. S'gonna be ok. We have climbed mountains thus far... this here is just molehill.
Reunited and it feels so goooood....
Thank you and a little something on my mind post coming up after Paxie and I get caught up on our sleep a bit.
We are home. Life, while weepy, is so SO sweet!
Love and hugs~
Sunday, March 25, 2012
It's dusk here. I love this time of day. It is when the world starts to settle. Calm makes its way in to take over from the chaos of the day. It is when the aroma of dinner begins to fill the house and freshly bathed littles in their jams start to mellow for the night. I am looking out over the window of Paxtons hospital room, staring at the setting sun with longing; "fighterman" asleep behind me. I am reminded of how much bigger life is than we can even imagine. Just as the miracle of babies growing in our belly's is more than just a science, so too is the rising and falling of the sun each day. Life is big, but there is ever so much more to it when you stop to take it all in.
We are amidst life and death right this very moment. Babies on either side of us cling to life. As I stare out I am acutely aware of this. As far away and lonely as I feel right now from life on the outside, I am also incredibly aware that this in here is life too. That sometimes paths involve a fight we never expected. A path that is far more than everyday carlines, dinners and playdates. A path of separation, struggle, fight and glory. That glory being a well of emotion I never knew until I had children, most significantly one that has had to cling to life himself.
This path I talk about, the one that ebbs and flows, waxes and wanes, it is so full of what life is meant to be. Not a life of who has the coolest clothes, most friends, nicest car, but rather a life of love and understanding that this is it. We get one chance and I find myself thinking so very often how do I want to spend this one chance. What legacy do I want to leave behind.... I like to think in these softening hours of the day that I will be able to say I lived this life. I did it all, sometimes to much, but I know that for every thing I have chosen to do or not do, there lies a lesson and for every lesson there is growth. Balls to the wall, go big or go home Jenn. That is me, but you know what, we laugh til it hurts, we dance through the storm and I'll be damned if we ever give up.
I am totally down with that legacy.
I cannot say that I would be those things had I not been backed into a corner with no choice, but to fight. To fight for the greatest love I have ever known.
Oh' dusk you stir me up. Remind me where I am going and where I have been...
Paxtons CRP number dropped from 19.5 to 13 overnight. The fact that they are dropping is good. Why they are so high is still undetermined. He should be at 1. Tomorrow an Infectious Disease doctor is coming by to assess him and all of his labwork (I don't like the name Infectious Disease, it makes me think of a nasty, incurable, contagious something or other ). IF and by if, I mean IF, Paxton's numbers continue to drop and ID finds no logical explanation for them, then we wipe our hands saying he caught a bug and head toward H. If his numbers have not dropped further or have risen we remain here until we can pinpoint what/where this infection is. Our main concern is not sending us home only to have us return. I agree. For now, we are chillin here. I am guessing we have watched Cars roughly 45 times at this point, I stopped the tally at 32 cause it was a lot of effort to get up and switch numbers on the dry erase board ; ) We watch videos of brothers on my phone. We get visits from awesome peeps who help pass the time. We are woken up far to early so we sleep in late.
Pax is my main man right now and if I thought we were close before, this time here together has super glued the deal. I am the ketchup to his cheetos (yes, he truly eats that) and he is the ice to my diet coke. At 2 1/2 I swear the kid knows I have been with him every single, solitary step of the way and his eyes say thank you a million times over to me. He clings to me like the little cobra that he is and every time I pretend to pull my arm away he tightens on his prey even more.
He begs for hugs, for me to "way down" with him, to "hold you" and I always, always will. Hospital or otherwise when my kids ask for hugs or for me to lay down with them I do so without hesitation because soon enough they won't ask anymore and I will look back knowing I never let a moment go.
Cheesy? Maybe? But when moments are threatened you quickly learn to cherish them.
It is my hope that tomorrow when the sun rises again, we have good news. Promising news. That sooner rather than later we are back where we belong living the life of carlines, dinners and playdates, only we are lucky enough to do so with the extra gift of knowing that even those things are extraordinary.
Goodnight from my "fighterman" and man is he ever a fighter!
Love and hugs~
Saturday, March 24, 2012
Tonight I cried. Tonight was one of these nights. I am sad and I want home. I want my boy to not be poked anymore. I want him to crawl into his own bed and smell the softness and comfort of home. I want to do the same in my bed. Daddy came to visit today. He surprised us and it was wonderful because we were sad this morning. The H word was mentioned about this weekend and no sooner was it brought up that it is snatched out from beneath us. Paxton's CRP test (a blood protein test to look for infection) not only came back positive but doubled from 7.5 to 19.5 in a matter of 12 hours. Not good. His body is fighting something somewhere, it's just a matter of finding out what and where. Cardiologists came in today and went back and forth about why the drastic spike and what it could be from. They talked more testing and more sedation and my heart broke. I want him home, where he belongs. I want that normal I talked about, that I have been dreaming about. It is so hard to watch your husband leave again to go home to everything you love while you stand in a sterile lobby tears streaming your face.
I am trying to dance. Trying so very hard, but we are both tired and we are both missing home so deeply and I want to be all happy and funny and tell you how Paxton puked all over me this morning and I panicked and hit the staff alert button because I couldn't find the remote with the nurse button on it, so my next best thought was to alert a staff member. Easy enough right. No, that is basically a code blue, but without the paddles kinda situation. So the door flies open, I am standing there puke covered, with 12 people staring and I say "uh...I'm guessing I wasn't supposed to hit that button." The humorous side of me told them I was just making sure everyone was awake! . The unhumorous side of me had just watched my boy get woken up at 5 a.m. to be poked 4 times by a legit idiot, who made him cry so hard he puked all over. (also here's a thought: they need to change the wording from staff alert to emergency staff alert . I mean staff alert seems so not life or death)
So I went downstairs and showered. I came back up, crawled into bed with my boy and we didn't move until 11 am. Clearly we had some catching up to do or maybe we both thought what was the point. Why not just snuggle all morning because right now we're living in a hospital and there's nothing worth getting up for so lets just stay right where we are.
Tomorrow I hope and I pray we get better news on his numbers. I hope tomorrow while we endure the storm that there will be some dancing too. We hope for a lot right now and we continue to learn how to dance through the storm not against it.
And like my girlfriend said today after reading this on my FB, "at least you've got moves". You all just wait to see my moves when we get the all clear. They may go a little something like this....
Running man style right out the front doors of this B!
And lastly, because what's a post worth without a picture of the blue eyed babe that has stolen hearts all across the CV unit.
That look says I am in charge, that crossed leg says I am a P.I.M.P. and that drink says the apple doesn't fall far.
Will update tomorrow when I know more. Prayers appreciated, heart hugs going out to all our peeps!
Love and hugs~
Thursday, March 22, 2012
8 days post op and nothing remains on this child, but IV access in his right arm. All chest tubes pulled, pacing wires pulled and all art lines pulled. Peg tube replaced for a mickey button today and all his meds are PO. Meds being lasix, asprin, tylenol and clindamycin.
It's close! So close I can smell it. Smell it as in my home, dinner in the oven, laundry wafting through the house, the nape of my older boys necks.
The book that started it all is coming to a close. Who's ready for the sequel....
Love and hugs~
It's a stream of consciousness kind of night because I am not going to lie, today was tough. Pax and I got roughly two hours sleep last night and that compiled with the lack of sleep in the last week altogether sort of sent us both over the edge today. There came a point where my head was so foggy I thought for sure I was getting the flu. That has since passed, thank God, but it never ceases to amaze me how the body begins to shut down when it hasn't had enough rest. I kept reminding myself over and over how much worse it could be and I let myself cry when I needed to. I missed field trips and baseball games today. I am homesick for my boys and it hurts my heart. I have these amazing people stepping in to do these wonderful things with my babes, but I am sad and jealous that I cannot be there. That is the truth and I think any mother would agree that you can be grateful and jealous all at the same time. Half of my heart is here and the other half is 2 hours away from me. It feels like it's been so much longer than it has.
Even when he screams "YOU STOP IT!" while pointing directly at the nurses trying to work on him, because he always adds a "pwease" to the end of it and we all melt to puddles. Kid so knows what he's doing.
ps I want to mention that I have received so many emails, facebook messages, blog comments and messages about us through friends that they have shared with me. I can't thank you all enough for your kind words. I write because not only does it help me to deal and heal, but I want his story to help others on this journey. I also hope that it helps those who aren't as well. I hope that those of us going through it and seeing things from a side of life that is so fragile you spend far to many moments holding your breath waiting for the bottom to fall out. Well, I hope we are able to show those who don't have to, that life is an insanely precious gift. The endless comments and letters I have received, and I read each and every one of them, bring such happiness to my heart. They make me want to sit down and share more because I see that this is opening eyes and hearts to a side of life that can change a person if you allow it. I want everyone to know this side of life. So thank you for taking time to share with me that my therapy is helping you. I am just lil' ole' me telling a big, big story for the most amazing little boy! I am his voice. This is Paxtons story, I am just his vessel and what an honor that is. Dear friends, I rest my insanely tired head tonight so full of emotion, motivation and love because all of you stood by us, some I know, so many that I don't know, and rallied around our family. You prayed and uplifted and while it may seem little to you, its huge to me. So, thank you. For reminding me what I should do with this story we have been living.... I can do it now and I know with all of you behind me that I will. For Paxton and for those just beginning.
Wednesday, March 21, 2012
Today is the first Pax and I are alone. You know, the "dynamic duo".
There is something incredibly deep and special about a mother and her son, but a mother and her sick son...oh' it is more powerful than you can imagine. Today was a day of many, small, but celebrated milestones here in CVICU. You can't really do big again after rocking out open heart surgery like you owned the joint. So now the two of us who both feel so very, very far from home, who's hearts ache with the need to be reunited with the other halves of our whole, we cling to each other until we are back with the others. Our party of five is down two crew members and we all feel it.
I walked to the cafeteria this afternoon and really thought about this life. You know, hospital life. I have lived it a lot over 2 1/2 years. You walk outside after being inside for so long and it's like being reborn. Something as simple as walking. outside. is kinda epic. I have been outside once since I have been here. I am desperate to get my feet in the sand and be drunk on ocean air. I know my boy is too. We want real life back, but the thing is, this is real life too. Real, REAL life. The part of life that stretches you and grows you in ways you didn't know you were capable of. The part of life I thought "I got" until I was the one in it. Is it weird to say that I am so f ing grateful for it?
Not only because I now have 3 of the most gorgeous, kind boys ever, but because without this journey I would just be. With this journey, I am. I do. I go. I reach. I stretch.
I take thousands of pictures just because I get it now. It, being, this life and what we are supposed to do with it. So I eat up all the moments. Not just the easy ones, but the hard and the in between too. The gift of this journey has allowed me to find the smallest things, like "brotha" bathing my boy for the first time since surgery the most wonderful "job" in the world. Or reading to my boys at night worth photographing. Or making friends with people who work tirelessly to care for my boy, because those people, they are moments too. And I am pretty sure in the end, our journey teaches them moments just the same.
My friend joked about me and my "glass always full"in a text once. I replied oh' trust me I have my days, my moments, my weeks. Even here in this hospital surrounded by life, death and the in between, I have my moments. So while my glass surely isn't always full, I am just as human and bit*%y as the next person, I do wear my "special needs glasses" full time and with those glasses comes the comprehensibility that we can choose how we spend our lives. Looking back and questioning up or looking forward and trusting up. I choose the latter, even in the scariest, saddest and maddest of times I don't ask why. I have three amazing little boys, one with special needs, but amazing just the same. Paxton in the grand scheme of things has stomped all over HLHS and said I don't think so. We are truly lucky.
Choose because you can, because it is a gift some aren't given. I choose while I sit here, sometimes in tears, sometimes otherwise to know that we will come out of this stronger and wiser. When I want nothing more than for Pax to fall asleep so that I too can close my eyes for a not long enough moment, I know deep down, this too shall pass and he will fall asleep and he will look at me with those eyes and all will be right with the world. Even in here. You know why...because we aren't the ones down the hall saying good bye. Every day that I don't ever have to do that is a day to let the tears shed if need be, but to celebrate all of these very blessed moments. Join me won't you...
Medical Update For My Heart Mamas:
Paxton is 5 days post Fontan operation. His heart rate is still adjusting to his new circulation so while a bit high around 120's when awake he is resting at 95 or so. His sats are....wait for it....90-93! He isn't cyanotic around his mouth anymore. His feet and nail beds are pink. I want to bust out my canon and zoom in on those piggys to prove it, but all I have is my phone for now. He remains on iv fluids, etecrin, potassium (due to diuretics) and toridol prn. He is having some lung issues. His right lung is full of fluid, today no worse no better, and after a sedated contrast CT scan we know that he has collaterals that need to be coiled off to stop this from happening. He did have a heart cath done 2 1/2 weeks prior to surgery that showed no collaterals, or none big enough for coiling, I am told, it is very common post Fontan for the collats to become exacerbated due to the complete rewiring of his system. We are currently trying to dry him up with lots diuretics. Holy pee batman! He had the mediastinal chest tube pulled yesterday and his two piggytails remain. His pacing wires are still in place and so is his RA (right atrial) line. We will be going to for cath Thursday or Friday as of this morning. We will continue to x-ray daily until then. Once we get this fluid under control hopefully we can start looking toward the H word ; ) Today he sat in his big boy chair, walked further than he has thus far but only with me in front of him as bait otherwise he plops his butt right on the floor and says " I wanna hold you" meaning pick me the frig up. He also got his first sponge bath, courtesy of Mommy, since surgery today. Kid was RIPE I tell you! So we have a little setback on our plate, but in the grand scheme of his whole entire bada%* HLHS history, this bump in the road is kind of like our hazing. We have had it to good this far not to pay our dues now. It's all in how you look at it.... Thank you to all of the heart moms who contact me via email. I try to update with medical mom version jargon so that when it is your turn you have a moms beside view to go off of. Heart hugs from Pax and I!
Monday, March 19, 2012
I have always said no sleep is a legit form of torture. I would like to reiterate that. It's only been 5 days, but 5 days in an ICU with a toddler is beyond a full time job. Then there's Paxton who is "still attached to the umbilical cord" according to my husband. This makes it twice the work. I can't even pee without him screaming for me. So I pee in the room with the door open and in walks the nurse. Eh' what the frig ever. Who cares at this point. I just know that Pax and I need some serious shut eye. It's nearing 11:30 and we are both still up. Mind you we get woken up throughout the night for whatever med he is due for, then come 5 a.m. on the money in comes xray. I can barely keep my eyes open right now. I can barely keep my eyes open all day actually. This last month is catching up with me. Scratch that, these past two years are catching up with me. I went to shower and brush my teeth for the first time today at Ronald McDonald (y'all should put your change in there at Mcdonalds when you get your daily diet cokes, cause its for peeps like me, oh' wait not everyone goes first thing in the morning for a diet coke...whatchoosay?) at FOUR PM, yes 4 pm. I'm sexy and I know it.
I can't break away from the cobra unless he's sleeping and today was a loong day so 4 pm it was. I can stink and wear the same clothes if that's what he wants...wait, demands. I didn't after all just have open heart surgery, so he kinda calls the shots around here.
Paxton is having some post surgery lung issues. His right lung has progressively gotten worse the last 3 days with fluid filling in it. This morning, which is why I couldn't break away sooner to groom myself, was a sedated contrast CT to determine where the fluid is coming from. He's still really wet this far out and his edecrin (a diuretic, the big gun one I hear) isn't quite cutting it. It has been determined that Pax has some collaterals in there that may need to be coiled off. Why these weren't seen on his previous cath I am still unsure of. That is why a pre fontan cath is performed.... I am hoping to get answers to these questions tomorrow. Today I spent a great part of the morning in tears, because, well because.... I stunk, I miss my boys and Pax was NPO at midnight and was up from 2 am on begging and I mean begging for water. He was NPO for 10 hours. It was hell. on. earth. Ok a little dramatic, but it was bad enough to have me crying in Paxtons bed this morning.
Austin and Mason both caught their first fishes today with Daddy in our lake. He was recording how Austin had finally learned to cast his line and low and behold, he caught his fist fish on camera. It hurt so good to see.
I believe baby boy is out which means I have, have, have to follow suit so that I can be on my A game, erh....lets go more with C game, for my main man tomorrow. I could write all night, but I have to check out for now. Wanted to update my peeps/prayer warriors of course. Paxton, while sleep deprived and highly, highly annoyed at being touched by anyone other than me, is keeping keepin' on. He has his moments, but rallies with a sly smile just when I think the sh*% is about to hit the fan. His resilience could teach us all a lot!
Mother of the year award goes to.... ME for falling asleep with one butt cheek hanging off the bed while the patient is still awake! Pax looks all kinds of protective over me though. The whatrulookingat look to my SIL who so kindly took this mother of the year award picture!
Night night friends. I will update after rounds tomorrow. Ok lets be real, I will update same time, same place tomorrow.
Love and hugs~
Saturday, March 17, 2012
I am all and by all I mean, ALL, he wants. Which is the most, and by most, I mean, MOST, wonderful feeling there is in the entire freaking world!
|the fist time i got to hold my boy post op|
I remember sitting at the table 31 weeks pregnant watching the doctor draw diagrams telling us what three surgeries this "fetus" would require to live and here we are. Can I get a Whoot! Whoot! 2 1/2 years later! Oh dear lord!!!! So many emotions! SO much to sort through still! So much to process! It is all still marinating and I am letting it. I am not trying to work through it. Not rushing it. This will take some time and a lot of writing. This is where the book will come in. This is why I don't think I could begin because I never knew the end. I can start now. I don't even have words, and that is saying something, to tell you the way that my heart feels write now. To express to you all as I sit here on old reliable, you know that ole' vinyl couch here at ACH, looking across at my sleeping boy post op, alive and doing well, how I feel. This has been 2 1/2 years in the making. 2 1/2 years of living in fear. Of never knowing how this would play out. Of never knowing the final chapter. I still don't know how long these surgeries will ultimately last for him, but that's not what we are focusing on. We are focusing on the endless hurdles we have bulldozed over and in their wake is this:
In the meantime we're busy eating. French fries of course, a West favorite all around.
|mommy pride at its best|
Thursday, March 15, 2012
Paxton is out of surgery and recovering. He is heavily sedated as of now, but all went well and doctors are happy with the repair. God is good! Prayers were answered. Today is a damn good, beautiful day. I will update more later. Thank you all for walking this journey beside us !
Update 8:10 am. Just got call they have made the first incision and are working through scar tissue now. He is stable and doing awesome.
7:20 am They have taken Paxton back to the OR. I will update when I know more. Please pray for my boy.
Wednesday, March 14, 2012
Paxton is on the books for 7 a.m.surgery tomorrow morning. I will update you all as news arises. Thank you for the prayers and gentle reminders that God is in control here. We are now shacked up in our old stomping grounds; Ronald McDonald House! Today we caught up on naps and cuddle time. I am going to check out early tonight, well early for me anyway, say hello to my li-le friend ny-quil and try to rest because I am guessing if all goes as planned tomorrow there will be little time for it in the coming days. Again, I am humbled by each and every one of you near and far for your kindness and love. I will rest my head tonight enveloped in a peace only all of you (ok and ny-quil ;) can provide. My baby boy is wrapped in prayer and support so thick it gives me goosebumps. For that, I thank you all. I know that life goes on outside this hospital so all of you taking the time to reach out to us in the midst of your busy lives to lift us up, to send messages and meals and offer to do anything at any time means more than you know.
On that note I leave you with my all time favorite quote:
You never know how strong you are until being strong is the only choice you have...
Love and hugs~
Ps pics coming, you all know I despise a post without pics. Stupid iPad. Laptop is en route and then y'all can see those gorgeous baby blues again ;)
No sooner are we admitted and in a gown than we are released. Paxton's surgeon was in emergency surgery with a Norwood baby all night and did not feel comfortable operating on Paxton. For that I am grateful. While I felt deflated for having to wait another day I knew it was for good reason. Patience is one of the many traits I have become quite accustomed to since having Paxton. Endless hours in the hospital will teach you that whether you like it or not. So we wait another day. My heart goes out to the family that was up all night with their newborn baby in emergency surgery and my heart thanks our amazing surgeon yet again for being ever so cautious with my sons life. Please continue with the prayers for Paxton! Tomorrow we make that last jump! Tomorrow, God willing, is his turn. Tomorrow starts a new chapter. I am told we are first on the list just as we were today. I will keep you updated as we hear anything.
love and hugs
Tuesday, March 13, 2012
We are holed up in a hotel here in St. Pete. Daddy and Pax are sound asleep and I am not, shocking I know. At this point I am just ready to do this. To "get er' done" as they say. I want it to be tomorrow night at this time. Then again I wanted it to be tonight a mere six days ago and here we are in the blink of an eye. In spite of pre op we had an amazing day together. The older two boys were absolute gems upon leaving this morning and there could not have been a better gift for Mommy.
Paxton endured all of his tests today like the trooper he has alwayS been. We are primed and ready for surgery first thing tomorrow. He is first on the list at 7 am. We are told it is expected that it will take around 5 hours to complete. 5 long, hellacious hours of waiting and praying. How can time go so quickly one moment and so utterly slow the next... this I will never understand.
What I learned again today, more than ever, is just how much Paxton touches people. There are people near and far reaching out to us. From literally all over the United States, Europe and Britain of course adding Pax to prayer chains, wearing his Praying for Paxton bracelets, sending emails, leaving comments, whatever the case may be, but nonetheless honoring a 2 1/2 year old boy who has zero idea how much he has inspired people in his young little life. I took tons of pictures today, they will not post for some reason tonight. I am to exhausted to fight it so bear with me through this hurdle.
What I love though is in the midst of all his testing and needlepokes in preparation for tomorrow, he keeps his spirit. Oh' how proud he makes me. How my heart swelled today reading post after post. Comment after comment be it facebook, my phone, this blog or my email. There is no "hatin" technology today folks for it brings people, friends and family together in a time of desperate need to be close. It allows you all to hold me up when there are moments I am not sure I can stand and those comments, they are the hand on my back. You may not realize that when you leave them, but I will be damned if they are not. You all remind me how strong my Pax is and if he can be that strong then, so too can I. Thank you to each and every single one of you that took time out of your lives to pray for ours. You will never know how much it means to us. Truly. You will never know.
Tomorrow is a big, BIG day. I will keep you all updated as news arises in quick spurts and when things settle I will post more. It's going to be tough for a bit. I am told he may have to be tied down for awhile and that will be hard on the mommy heart and I will have a lot of consoling to do so I will be back and forth as I can be, but of course my man comes first. Again from the depths of my soul, thank you all so very much for wrapping us in this love and prayer. It is overwhelming. I cannot wait for the one fine day when I can sit Paxton down and show him how truly awesome he is to so many people. Thank you all for loving him as I do. He is going to do great things here I promise you that peeps. I am off to snuggle him, wire, drain, cord free for the few hours I have left.
love and hugs~
Monday, March 12, 2012