Fly high sweet baby boy! Your job here is done, and we are all so proud of you.
I'm glad I came up to meet you, if only for a few moments!
Prayers to the family as they struggle to go on without their Carter Jay.
Happy Memorial day!
Fly high sweet baby boy! Your job here is done, and we are all so proud of you.
I'm glad I came up to meet you, if only for a few moments!
Prayers to the family as they struggle to go on without their Carter Jay.
Happy Memorial day!
Posted by Lacey at 8:51 AM
How fitting that this weekend is Memorial weekend. People are out camping and playing with family and friends. We remember soldiers that died for their country, and people that have passed on.
I got to meet an amazing warrior for the first time today. We had planned to get together. We would let each other know when we had doctors appointments. To see if we could by chance meet up. And it had just never happened yet. But today may be the only time I get to see him, so I cherished every minute. Tomorrow we will see what Gods plan for sweet Carter is. They will take him off life support and see if he is meant to fly home, or meant to stay with his family for a while longer.
I also got this email from a friend two days ago. Again, its timing eerily clear. You may have heard it. I had not, but its beautiful...
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
I teared up because I could totally picture my Jaxson up in heaven, saying that he wanted to come down to earth, to suffer, so that it would make the world a better place. Indeed he has done his job. I wouldn't have met the people I've met without Jax. I wouldn't know sweet Carter and his momma if I never had Jax.
So we wear our Team Carter bracelets, and pray tomorrow that everything goes according to Gods plan. We will miss sweet Carter, but he will be whole, and tube free, and able to run and play with his angel friends!Also when I came home and got on the computer to write this post. I see that sweet Ben has also earned his wings today. Ben was one of the first kids to get a blankie. And the first kid I got to hand deliver a blankie to. He was stuck in our PICU, accross the country from home. His mom is so sweet, and not to long ago she was here again and we got to have breakfast together. We love you Ben and your sweet mom Becky!
Posted by Lacey at 6:09 PM
Posted by Lacey at 8:34 AM
I got a little news on the echo, but not a full report. It does seem that there is no clot, so thats great news. It also says that the quality of the echo is not great. Why its not great, I don't know. Why pay to do an echo if its not great quality! I don't know what his pressures are yet. She said the echo is similar to his last one. The problem with that is his last echo was right before he was trached and his pressures were high. So my guess is they are still higher than they should be. I did hear one thing that I didn't know before that kind of makes me mad. She said he had a residual ASD. It took me a second to hear what she said. Wait, a residual ASD or VSD? I asked her. She said both. I about flipped. We knew he had a residual VSD that didn't get closed in his surgery. Now you are saying he still has an ASD too? What the heck did you do in surgery if he still has two holes in his heart? Sheesh!
My cardiologist is going to read the echo and then call us.
I did have something to keep my mind busy today though. Me and Ray decided to walk into the USCIS office and see if they would do our fingerprints before our appointment, which is scheduled for June 8. I didn't want to wait until June 8, plus we will be in California at a wedding during that week. There was not a soul in the waiting room, and they said they could do it! Yipee, now all we have to do is wait for the approval to come, get our dossier finished while we wait for that, then send it all off to Eastern Europe!
Another thing is Carter was invited to be on the All star teams for baseball. Well tryouts for the different teams is June 5. Of course, the day of the wedding! We really want Carter to do All stars this year, because he got jipped big time last year. So the plan is to leave Mondo and Carter home with my mom. She will take him to the tryouts on Saturday, then on Sunday she will put them on a plane to LA where we will pick them up. This will be interesting because they have never flown before, and they will be doing it alone! I'm not worried though. My mom can walk them up to the gate, and we can pick them up at the gate, so they will never be alone.
Posted by Lacey at 10:21 PM
I'm a little nervous about the echo this morning. I'm not sure when I'll find out the results which is a little frustrating. Let me give you a little background. Our childrens hospital, PCMC, is 45 mins to an hour away. They just built a new hospital literally 5 mins away from us. This new hospital is not a childrens hospital, but they have outpatient clinics there with doctors from PCMC. This is fantastic for us, I would have never made it all the way to the hospital for a 9 am appointment unless I got up at 5! When we have an echo done at the hospital, the doctor always just comes and tells me the results right then. Well at this hospital our doctor wasn't there, so I don't know how soon they read it and put it into the system. As soon as its in the system my ped can pull it up on her computer. She's going to try at lunch and see if its up.
The reason I'm worried is the echo tech kept asking me weird questions. She asked me if he had a line in that went close to his heart. I said no. She asked me if recently he had a line in. I told her he hasn't had a line in his upper body for two years. He's clotted off all of his major vessels in his upper body, making it impossible to put lines in. So now I'm worried he has a huge clot or extreme narrowing somewhere new in his heart. The techs aren't allowed to say anything to the parents. Probably because they are not trained to read the echo's and could possible give wrong info. I'm hoping its nothing, but Jax has a major clotting disorder. A clotting disorder that has already taken the life of a DS friend. We thought that Jax was doing good on his blood thinners, but maybe he has clots we haven't found yet.
Ugh, I need to keep myself busy or I'll go crazy!
Posted by Lacey at 10:41 AM
Please pray today for my little friend Carter. His bronch yesterday was not good, and his tracheal Malaysia is horrible. His family has some decisions to make now. It felt like someone hit me in the stomach, because it reminds me of not long ago making this decision for Jax. It was an extremely hard decision, and one I still sometimes regret. You know it hasn't been easy for us. There are many days were I hate the trach and want to rip it out. And a lot of Jax trach problems are due to his severe tracheal Malaysia. His airway collapses around his trach and makes him cough and produce more junk. Which means almost constant suctioning! We finally got the robinol yesterday. The crazy thing is about an hour after I gave it, he seemed junkier than ever. I was freaking out wondering if kids ever have an opposite reaction to it. Or maybe this happens at first and then it goes away. But I basically had to sit by him and constantly suction him. I'm also calling me ENT about the lidocaine neb. I need some things in my arsenal to try when things get bad, otherwise I'm going to lose my mind. Especially because we are going back to California in less than two weeks. We have a wedding and then of course days in Disneyland with our season passes. In March when we traveled with the trach it was a huge pain. Because although the air is better there for a trach, you are still changing humidity on him and it takes time to get used to it. I just remember sleeping next to him in the hotel so I could constantly suction him. It was not fun. So I plan on having all the drugs to combat that so we can have a good time!
Our new trachs came yesterday too. I really hope these help. I'm not so sure though. They are a little bigger in diameter. We are trying to open his airway more now that we know this size will fit. You know, after the nurse shoved it in and made him bleed all over the place! The size trach he has now is newborn size. And the new one is still infant size,its actually the size they intubated him with when he was 4 months old! So he actually went down a size because of the narrowing in his airway from frequent intubations!
Here you can see the difference in the trachs. The one on the right is a normal trach. The left is his old custom trach. You can see how much longer it it. We are trying to bypass as much of the trachea as possible.
This picture is his old and new customs. You can see the one on the right is a tad bigger around. Our hope is it will push the airway open and help the coughing fits. We'll see! But look how tiny the holes are compared to my fingers. How in the world to you breathe through that tiny hole?!Echo tomorrow. Send good heart vibes and good pulmonary pressure vibes please!!
Posted by Lacey at 9:48 AM
Its almost June for God's sake!
As you can see from the picture above, that was taken this morning, its been a very cold, dreary spring! Yesterday was chilly, but we decided that would be a good day to go to the zoo. The animals tend to be more active when its not super hot.
This is what Jax did most of the time at the zoo. which is a good thing, because when he's awake, he needs constant suctioning. It makes it not so fun to take him places anymore. Which negates my whole feeling of including him in everything! But look closely at this picture, do you see anything unusual?Yeah that's a nice, big bee on my son's chest! I had no idea it was in this picture. Gives me the willies just looking at it! This kid is a bee magnet. When he was barely out of the hospital from his 4 month stay, our first outing with him, he had a hornet on his chest. I didn't see it and I put him over my shoulder. He started fussing and when I brought him down I saw it. I totally freaked out because I'm terrified of bees. It had stung him like 3 times. I was scared to death he was going to have some weird reaction, after all, he had just spent the last 4 months fighting for his life. We were still extremely nervous about his health.
Posted by Lacey at 8:37 AM
Normally I don't mind the rain, I'll take rain over snow anyday. But I'm so sick of the cold I could scream! Global warming makes me laugh, because I swear the summers are getting shorter and colder every year. We get maybe one day thrown in that we can wear shorts, then its back to sweatshirt weather. I hate it because I'm missing baseball games because I have to keep Jax out of the windy cold!
Our passports finally came today, yippee! A bunch of our paperwork just needs our passport numbers and then it can be notarized. This is a huge step! You can't really see mine, but thats because Mondo was the photographer!
Posted by Lacey at 8:45 PM
He got a hit, he got a hit! Confidence is soaring, now he knows how its done! His whole team of superleague players came out on the field to congratulate him! What a group of boys!
Posted by Lacey at 8:50 AM
Today we finally had our pulmonology appointment. The good things are, she said he sounded pretty good, she gave me a perscription for the robinol, and Tobi is our new best friend every other month! The bad things are, she has no idea why he's so junky, she thinks it may be his heart, YIKES! She got our echo moved up to next week, So thats great. My ped had been saying she wanted to try and get it moved up because she thinks his already loud murmer has gotten louder. You should hear it, its impressive! Pulmo said the same thing and she's wondering if something heart related is going on. We are in big trouble if its heart, because cardiology here is famously aloof! They don't have to be nudged to get things done, they have to be punched to get things done. So we'll see what the echo shows, and hope it gets accurate pressures, because they could still be high too. We are just wondering why his saturations are still low, when his lungs sound ok and the x-ray is not any different than normal. Who knows, Jax makes up his own rules!
I'm still trying to get a hold of people, and get addresses so I can get the auction items sent out. So if your still waiting you can email me personally at email@example.com. The auction seems like a simple fundraiser, but it is indeed a lot of work on my end, so bear with me! Also, since the bows were so popular, we have decided to sell those continously on Makayla's blog as an ongoing fundraiser. So if you didn't win them and want some, you can still buy them. I just need to figure out a good way to post them on there. If you know how to link a post so you can click on it in the sidebar please let me know how to do it! I hope to have them up in the next day or so!
Posted by Lacey at 12:58 PM
Don't all of us moms wish we had a plastic bubble we could wrap around our kids to keep them safe from everything? I have found, especially after having Jax, that I wish I could keep heartache from my kids. I have also found, that my sensitive oldest son has gotten more sensitive since Jax come along.
I remember him being all boy when he was little. He loved to play baseball, until he was hit with a pitch when he was 6. That was the end of baseball for him. But the last 4 years, he has been an emotional roller coaster. We joke that he's our girl because he has more drama and hurt feelings than any girl I know!
He is Jax special buddy, and lover of all things special needs!
He played soccer a few years ago, but never really got into it. When Carter started baseball a couple of years ago, and became a 6 year old superstar, Mondo decided he wanted to play baseball again. Last year he told us he wanted to play after sign-ups, and there was no more room. So this year we asked him early. We warned him that if he played, he was going to be playing with kids that have played for years! And that they would probably be a lot better players than him. I didn't want him to be disappointed.
I'll admit, I was really worried about him playing, especially after I found out the team he was on consisted of players that played in a super league too. But we lucked out big time. The coach is incredible, and the players humble. They included him immediately, and never got upset when he struck out or missed a ball. Mondo has yet to hit a ball in a game. It is frustrating to me because I know he can do. Sunday we took the boys to the park and he was hitting them like crazy. He gets out on that field and freezes.
My shy, sensitive boy!
Last nights game was a nail biter. The two top teams were playing each other. It was a very close game, and unfortunately we had a horrible umpire. He botched calls left and right, for both teams.
We lost by one point.
Mondo was extremely upset. Not really because they lost, but because he didn't hit the ball. After hitting all those balls on Sunday, he was ready for the game. The umpire did call some bad balls on him, and I know that didn't help, but his self esteem is shot! He literally sobbed after the game. He also has CRT testing in school this week, and tons of make up baseball games. We will be at the park every night this week. Last night I gave him one of Jax trazadones to try and help him sleep all night. He's like me, he will lay in bed all night, unable to shut his brain off. He woke up pretty happy this morning, but I hate that his self esteem is so low. I want my boys to experience everything. Everything except heartache. And I know that heartache is a part of life, but I also think what they've been through with Jax is enough for a lifetime. What do we do when we don't have that plastic bubble to wrap around our kids? I want him to hit the ball so bad, and I know he can do it.
Its also so hard with Carter. He is probably going to be playing in the super league next year with a couple of his team mates. He is just to good for this league. His team is undefeated right now. That doesn't help Mondo's self esteem at all either!
Posted by Lacey at 9:05 AM
These next 4 months are an anniversary of sorts. Four years ago was the four months Jax spent fighting for his life in the PICU. If you've heard the story or are sick of it I'm sorry.
Do I dwell on it?
But I do think its important to remember what happened and what he went through. I take pictures of him every time he is in the hospital. And I take them no matter how bad he looks because I do think its important to have those. I don't remember every single day. Its times like this that I really wish I had a blog back then. It would be really nice to be able to look back and be like, Oh he was extubated this day, or he had an art line put in that day. There are specific days I remember like the brain injury, or all of his heart surgeries. But I can't remember every time they had to reintubate him, or scans, MRI's, and lines.
Every month I'm just going to talk a little about it, since most of you know the story. He was admitted April 22, and continuously got worse until April 27th was the first time he was rushed to PICU in respiratory failure and had to be intubated. So May was hard because he was intubated for a week, they extubated him late one night right before shift change and we left so I didn't get to hold him. And when I came in the next day he was on C-pap and they were going to intubate him again. I demanded to hold him on the C-pap before they reintubated him, and thats the first and last time in May I held him!
Four years, wow, that means my baby is going to be 5 this year! Wow how times flies, and yet seems to stand still at the same time. Its amazing to both see how far Jax has come, and how stunted some things still seem to be.
Like I never thought four years later we'd still have so many tubes climbing into his crib, or that he would even still be in a crib!
Posted by Lacey at 7:53 PM
You only have a couple more hours to make your bids and make sure your the highest bidder so you don't lose your item! It closes right at noon! Click here!
Posted by Lacey at 7:43 AM
First, a clarification from my last post: My ped does not deal specifically with Jax seizures, his neuro does. Neuro here is out of ideas on how to treat his seizures. We have tried every med possible, and he is currently on 3 seizure meds and the ketogenic diet. We are planning to go see the world renowned Dr. Shields in LA. Which will be good because we hope to be living there soon anyway!
Ok anyway, I'm super excited because we are finally redoing the front yard. When we bought the house 2 years ago it was a foreclosure. That was great for us because we got it for a steal, but the lawn had sat all summer not getting watered. It was a mess. And while now it looks pretty good, and its really green, it still is covered in weeds that we can't get rid of. And I also found out from my neighbor that the people that built the house didn't even put top soil down. The whole front lawn is uneven and bumpy. So our plan is to rip out the entire front lawn. Put up a border for a flower bed, and put a border around the rocks. That will be nice because we also hate the grass growing in between the rocks. Its impossible to trim in there without breaking your thread! Then we will do totally new sod. Yeah!
So here's the before picture.
Posted by Lacey at 5:09 PM
Posted by Lacey at 9:17 PM
You all know that our blogs are a place for us to vent, a place to keep a journal of the goings on in our life. A place to meet new friends, and I've indeed met soo many fantastic people! And the best part, a place to support people that maybe have a new diagnosis or need some prayers.
Today is my venting day, so if you want you can skip this and just see the cute picture of Jax and daddy sleeping away, like boys do so well in any place.
My gripe, well its the only gripe I've had in the last 6 months. The stupid trach!
I hate it, I hate it with a passion. Has it helped Jaxson's health? Yes, tremendously, and for that I'm very grateful. But indeed it has taken over our lives.
I stewed about whether or not to trach Jax, and all the doctors that I trusted told me it was necessary. But all of my fears that I had about the trach are coming true. It is much harder to include Jax in family things like we've always done. Do you know how hard it is to take him to a movie? The suction machine is so loud that it just echos in the theatre. And sleep, well you might as well just kiss that one goodbye. Especially now that I have no nursing care, even though I know people that have much easier children and get nursing care! I have to drug my baby at night to sleep, and even that doesn't always work. Like this morning, I've been up since 5:00 because thats what time Jax thinks he needs to wake up even after having trazadone last night! I used to be able to turn his mobile back on and he would just hang out in bed. Now I have to sit in the chair next to his bed so I can suction him every couple of minutes! You go to the grocery store, suction! Your driving down the street, you have to pull over and what, suction. Suction, suction, suction!
Thats what our lives have become. Just ask Mondo, he is our suctioner if we are all in the car together. He sits in what we call the suck seat, the seat next to Jax!
I hate it!!
Aww, I feel better now that I got that out of my system. Now I'm off to have a huge cup of coffee because its going to be a long day!
Posted by Lacey at 7:31 AM
Here is Ella's button, click on it and go to her blog and copy it to your blog!
It's been extremely hard for me being so far away from someone I consider a very close friend when she needs me! I have a few really close friends down there that I hate being far away from. I do have some close friends here too that I don't want to leave, ughh, its hard being so torn. But if we had already moved to the city in California that we are planning on moving to, I'd be about 20 mins from the hospital were Ella is! Oh how I wished we were already there! We are still actively looking for jobs down there, but we can't go until we get Makayla home because it would change our home study and everything! If we weren't going to California in just a few weeks, I'd be on a plane right now going down to help. But we'll be there soon, I just need to hang on until then.
Tanner asked me last night out of the blue if Ella was going to lose her hair. I don't know where he heard that, since when I told him she had cancer he didn't understand what I was saying. But autistic children are much smarter than we give them credit for, and I think he understands more than I think, he just holds it in!
And remember to email me, firstname.lastname@example.org if you want to help or send something to Ella!
Also, I am extending the auction to Friday, I've added so much new stuff that I need more time for people to bid, so keep on bidding!
Posted by Lacey at 8:40 AM
The boys wanted to bring me breakfast in bed, which was really difficult. I stayed in bed as long as I could but it ended up being breakfast in Jax room after his morning suctioning!
Whatever, the boys had a great time doing it, and thats all that matters.
I love being a mommy more than anything in the world. I can't believe that next Mothers day I will have Makayla here with us!
Posted by Lacey at 1:51 PM
Tanner's little Ella needs our prayers! Her little body has transitioned into leukemia. I talked to Heather yesterday and she was quite worried about that white count. Not a few hours later we got a text from Denise that they were admitting her and that they thought she had transitioned. I talked to Denise last night and of course she is always upbeat. She will be the perfect cancer mom, and Ella the perfect warrior.
Tanner doesn't understand what leukemia is, so when I told him he just shrugged his shoulders and continued playing. Ella is his little girlfriend. When we saw them in March he was bound and determined to sneak her in our car and bring her home.
Posted by Lacey at 9:31 AM