A rough night

First of all, look what this little stinker did to his cannula. This is a first for us, but when your pulling on it all day this is bound to happen.Yesterday was kind of rough for my munchkin. He coughed his head off all day long. And his bowel problem is getting worse. He's getting distended every day and so I'm having to give a suppository every day instead of every 3 to 4 days. I called his GI doc yesterday and she's booked until August so I'm supposed to call today between 9 and 10 because she talks to patients then and she may be able to tell us what to do over the phone. If not, she should be able to squeeze us in somewhere.
And then, he was laying on my bed, and when I went in to change his diaper, his face was more swollen than normal. His eyes were super puffy. I took a pic so I could show my doc but you don't get the full effect from a picture. But you can definitly see his puffy eyes.

He also sounded horrible, he sounded wheezy, I guess he's trying to be like his asthma brothers and daddy. So when he was asleep I decided to try albuterol with him. I took the boys mask off and used the hose and just propped it on his pillow, then I didn't have to stand there and hold it. It didn't seem to do much good though. It didn't bring his sats up at all either. In the middle of the night I had to turn him up to 1 1/2 liters.

Needless to say it was a long night. His oxygen is back down this morning but he's still higher than usual. I feel like I'm being pulled in a million directions with him right now. We are talking to GI, hemo, neuro, and cardiology about problems we are having right now. His neurologist even said that he doesn't think he can do anything else about his seizures, that he's tried everything. I don't think so, and why would I want to go see such a pesimistic doctor? It doesn't sound like he cares to much. But my pediatrician wants to get the EEG first and then decide what do to.

Sigh, its always something, isn't it?

A whole jumble of stuff

First a little update on Jax. He still sounds like a bull dog, and he's needing more suctioning, but no more fevers. It must just be a good old fashioned cold. We are just waiting to hear more from our hemo doc about the clotting specialist he's going to call in Colorado.

I'm a jumble of feelings right now. We've been through financial ruin since we had Jax. And a lot of you probably know but we got a settlement from his brain injury and are finally climbing out of the hole. It just doesn't seem to be happening as fast as I would like. We've been frantically trying to rebuild Rays credit, it went up but today it went down! What the heck, their so quick to take points away, its crazy. I don't know what to do. We've paid a bunch of bills off, we even opened a credit card, use it once a month for dinner or something, and then pay it off. They say that helps. If anyone has any credit advice, I'll take anything.

My sister-in-law sent me this poem and I thought it was very sweet.


Heaven’s Very Special Child

A meeting was held quite far from earth
It’s time again for another birth.
Said the Angels to the Lord above,
This Special Child will need much love.
His progress may be very slow
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won’t adapt,
And he’ll be known as handicapped.
So let’s be careful where he’s sent,
We want his life to be content.
Please Lord, find the parents who
Will do this special job for you.
They will not realize right away,
The leading role they’re asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
In Heaven’s very Special Child.

I've got some friends on here that you probably know, but need some special prayers tonight too. Miss Zoey is starting her final round of chemo tonight, and it will be a double whammy for her, so pray extra hard for her to fight this like she has all of her other rounds, like a champ. Here's a video from when we visited her. You can't really see Jax but I didn't know Ray was taping or I would have held him up. If you look close you will see Zoey blow us kisses. We got a lot of those that day. Ignore the mommies talking in the background.

Also sweet little Arabella needs prayers. She is the one that is reminding me of what I went through with Jax for 4 months. She is on high vent settings and everytime they even touch her she drops her sats, she's very sick right now, pray for her also.

One more, Jax little Emerson just got her second transplant. Liver, bowell, kidneys, pancreas, all transplanted. She is also very sick right now, and if she rejects this then there will be nothing else that can be done for her. She needs prayers. I know there are many more that I've forgotten, so just pray for everyone. JK

Oh, one more thing, Arna, you better come home from the hospital tomorrow, Jax hasn't played with you in a while and he misses his friend.

Some randomness

I've been meeting a lot of new downs mommies on here lately. Man I never knew there was so many of us around. Its so fun to meet new people and their adorable kido's. A couple are pretty sick right now, reminding me of when Jax was there for so long. Art lines, increasing vent settings, coding, all that crazy stuff. I just wish I had my blog back then. It would be nice to be able to go back and read through stuff, even if its not all good. Its a good record of when things happen.

I was going through pics today because I was looking for my blankie logo. I couldn't for the life of me remember where I saved it. I was looking at pics of Jax over the last few months. Heres just a few.

My long 24 day stay in October

Daddy making me smile

My nissen redo in March

I'm a horrible mommy

I'm a horrible, horrible mommy. On Friday Carter had a baseball game. A storm was coming in for the weekend and it was cold. It wasn't to cold outside it was the wind that was freezing. But they didn't cancel the game because it was not raining. I had Jax with me because I didn't want to miss the game. He was in his stroller and he was completely covered up. We were joking that he was warmer than all of us and we were going to climb in with him.

Well Carters team won.. go D-backs... but Saturday night Jax started sounding junky. This morning he had a fever of 103. I don't know if the fever is from an oncoming cold, or if this is related to why he's been so cranky and not sleeping lately. But I will always think its from taking him out in the cold. Even with him I've never kept him sheltered. I make people wash their hands but I take him places. I know he needs to be a little exposed to stuff so he can build up his immune system, otherwise if I never took him out, the first time I did he would catch something. I know I can't prevent a simple cold, expecially with 3 boys in school, so we'll wait and see if he gets a respitory infection, or if we find whatever's been hurting him lately. Just pray that he doesn't end up in the hospital, either way. We haven't been in for a month and a half, and we'd like this to be a home streak, since October through March has been one hospitalization after another.
Keeping him on his monitors so I can watch his oxygen when he had the fever.

Seriously mom

Spread the word

Okay, this is my challenge for everyone. To help spread the blankie word. Spread the word to everyone you know, you don't have to be the mom to request a blankie. I've had people request for other people they know. Also, we may be starting a rememberance blankie. I've had a couple of requests for people whose kidos didn't win their battle, but I want them to have something tangible. So I've got someone who will stitch names and dates of birth and death for a rememberance blankie. Also spread the word to help us get donations, so we can send blankies to everyone who needs one. I even have a request from Australia, cool huh?
Write a post and put this button in so everyone knows where to go.


Thanks for your help.

this is my blankie table, I need a bigger table, so I can get more organized with whats done, what needs to be done, and what needs to be sent out.

A quick update. I finally got a hold of Jax hemo doc. He said he does have antiphospholipid antibody syndrome, a clotting disorder. I've been trying to get them to give me a name for a while and they just kept saying he has antibodies. Since no one wants to fix the SVC syndrome, or the narrow SVC vein he has from an old clot, he is going to call a doc in Colorado who is the pediatric clotting specialist. I love this guy, he is on my same page, since my sweet cardiac surgeon can't help us, we need a second opinion on what to do. I am not leaving him in the hands of our cardiologists here, they've already screwed him over once. So stay tuned for more info.

Tomorrows Friday, yeah

Jax slept until 4:00 this morning. Yeah. I still can't figure out what is hurting him. My mommy radar is going off. We've thought of his tooth, his tummy. But its been 4 days now, I don't remember tooth pain lasting that long. Tomorrow we go to the dentist to make sure its not infected. His teeth take so long to come in, that the risk of infection is higher. They also want me to do enema's for the tummy. That will last all of two days. I'm also wondering if he's getting worsening headaches from the SVC syndrome. And still no one wants to fix it. She also wants me to ((squeeze)) him all over to see if something hurts. He has more fragile bones because of his severe hypotonia and not weight bearing at all for his three years. She things he might even have a broken bone somewhere. Yikes, that would make me feel horrible.

I called Pingree, our autism school. And of course they are full for next year already but she's going to send me an application for next year to get him on the list to get pulled in if there's an opening. His resource teacher thinks he will be fine next year because she's requested a great teacher for him, which may be true, but I still think he needs a teaching envirnment that specializes in autism. Maybe we can get him caught up a little. He wants to go to. Last night he brought me his video from preschool there and wanted to watch it, he also wanted to know if Darcy would be his teacher again. I told him probably not but he might see her around. It makes me happy to see that he wants to go there.

Today we got to go to maturation with mondo (Raymond) my oldest. Yikes, I thought boys did 6th grade and he's only in fifth. He's 10!! Me and my hubby both went. But I missed most because Jax was so cranky I had to take him out. Man it makes me feel old to think my son is nearing puberty. Aaahh, run for the hills. He's my oldest, the one that looks like me, and he is super sensitive. He's the one that has been affected the most with whats happened to Jax. He tells me that when we die, he gets Jax. So sweet, but so sad that a child realizes he will probably have to take care of a sibling. Its amazing how our other kids mature when you have a special needs child.

Pray for sleep tonight

Yeah I should probably be in bed right now since Jax is in bed, I'm going after this I promise. I'm hoping he sleeps better tonight, so I can sleep better tonight. We did an x-ray of his belly today because my doc will be out of town for a few days and she wants a plan before she goes. The plan is for enema's, yeah, I think that will help for about two days. I'm getting frustrated at no plans for helping the inability to pass anything. My surgeon did say they can put a hole in the belly for suppositories to go through, so you don't ruin the rectum, but he didn't want to do it on Jax and I didn't want another hole in the body. But a friend made a comment about it so I googled it. It may not be half bad, it looks like another button like his g-tube. We need to seriously discuss if this is what he needs.

The other thing that has been really bothering me and I think what really caused me to go over the edge this morning is the overwelming grief for a man that has been given little hope after he's given hope to so many of us. A man who's had his hands on Jaxson's heart and so many others and has sat by bedsides of extremely sick babies, not leaving until he's sure there ok. Why does this happen? I'm so sick about it. I was waiting for his email about how he could help us with the SVC syndrome, just to find out he's no longer working, insteading fighting for his own life. Please add Jax Cardiac surgeon to your prayers tonight.

But I had my revealation today. I was walking out of the grocery store with Jax and this lady and her down syndrome son walked in. He was probably in his 20's. He didn't see Jax, but he locked eyes with mine and followed me out of the store with a big smile on his face. He didn't turn away until I was out the door. That was my sign, to get up, quite whining, and appreciate this beautiful little boy that I've been given. Don't get me wrong, I've always appreciated him. But it does get harder with every setback he has. He is my life and I wouldn't trade him for anything in the world.

A rough week so far.

Man its been a rough week so far. I don't know if part of it is getting back into the swing of things from vacation or what. I haven't been sleeping at all. Part of that is Jax fault. I was thinking it was his tooth because he's getting that top front tooth in and its fiery red and swollen, but last night he wouldn't go to sleep and I was holding him and his bowels were really gurgling. Its making me crazy, I vent his g-tube but get nothing, its all air in his bowels. He not only doesn't poop on his own but he doesn't pass gas either, so his bowels are full of air. I'm so frustrated I don't know what to do for him. And it takes me forever to fall asleep, and as soon as I dose he's up again. My pediatrician told me she was going to write me a perscription for a sleep aid that's not addicting, but I won't take anything except melatonin because I worry that I won't hear his monitor at night. But melatonin only helps you fall asleep. So the 20 times I wake up at night it doesn't help.

So I have a super cranky baby, and we have been fighting Tanner ever since we got home to go to school. I got the psychiatrist paper for him the other day, and of course its typical autism stuff she see's. Plays by himself, worries, can't interact socially. She wants to see him weekly to. So it makes me wonder if he's really ready to be in a regular classroom, he's never there. He goes to resource, speech, OT, and now the psychiatrist. Yesterday I called our autism school that he went to for preschool to see about sending him back there. The problem is its the only school so theres always a wait. Next year is already full, but she's sending me an application so he gets on the waiting list, and if someone doesn't go he will get in. I still don't want to medicate him, but she's giving me something for anxiety thats fast acting and you only give it to him when he needs it, not every day. I am hoping this will help because he wont go to sleep at night until you tell him he only needs to go a half day.

Argh..

Also, I seem to be having a rough time with things lately. I keep seeing all of your videos of your cute kids and what they do, and it makes me long for that with Jax. The giggles, the funny things they say. Keep posting them, because I love to watch them, I just go through fazes were I mourn the loss of my baby, and I'm trying to bring him back out again, but his brain has been severly damaged. I just think lack of sleep is making me a little cranky too. I've been deciding how to get my girl, I always wanted 4 kids, but I really feel like theres a girl for me, and I have been thinking of adoption. Not only am I longing for a "normal" child, but I'm longing for a "normal" downs child now, does that make sense? Downs kids are definitly addicting, and I would love to adopt another one. we'll see.

Here's Jax with his froggy that Alyson sent him, thanks so much, its loud and happy and he does turn his head to it when we play it.

More Blankie kidos

Here's some more kids that got their blankies while I was gone. Go to the blankie blog to read their stories.

This little girl is very special to me. We've been internet friends for about as long as I've had Jax. This is Libby. She has several congenital heart defects. A few hours after her first surgery at just days old her heart stopped. It resulted in one full hour of CPR and echmo for a few days. I tried to repost her video on here but thats one thing I haven't mastered yet. (how to copy onetruemedia from someone else to here)

She's had 3 open hearts so far, she was scheduled for her fourth in March but her insurance decided the day before to cancel her because she was to expensive. Its rescheduled for July. This surgery should last her until she's around 13. Then more will be needed. I actually ran into her at Disneyland last year. I knew she was going sometime with Make a Wish, but we were leaving California adventure and I saw a guy pushing a little girl with oxygen, and that beautiful long hair to her tushy. I stopped him and said, Is this Libby, he looked at me like I was crazy. I explained how I knew her and we planned to get together the next day but her mom was sick and we were leaving. But what are the chances out of millions of people that go to Disneyland that we run into her. Keep her in your prayers as they once again get close to surgery.

More Disneyland and g-tube problems.

Some more fun pics. me and Carter on Dumbo.

The Finding Nemo submarines.



Riding the big pirate ship.



All of us with Mickey, the king of Disneyland.

Us with Donald, do you think Jax can put his head down for any pics?

Me and Jax on Buzz lightyear ride.



The Mickey statue at our hotel. Do you think I could buy this for my yard?

We are still having g-tube problems. We are on our fourth button since Feb. My insurance only pays for four a year, so I'm expecting a nice bill from the hospital in San Diego that gave us two buttons. I don't know what the problem is. We may need a button that doesn't have a balloon in it. I do notice that when he hasn't pooped in a few days and his tummy gets big, that his button leaks a lot more. But thats another problem we've had since the nissen redo. No bowel movement on his own without a supository. He's always had "poop" problems, but not like this. I'm taking him in tomorrow for maintenance stuff, so we'll talk about it. Any idea's about the button would be greatly appreciated. I'm usually the one giving advice, since I worked at the hospital before I had Jax, but even I'm out of ideas. "Help"

We're home!!

Well we're home. We've been home for 2 hours and I'm already ready to climb back into the car and drive back. Now its back to reality, and reality sucks. I've been opening mail, and I have so many bills to call on. We've already hit our out of pocket this year, so I need to find out what there for.

Sigh,

Oh well, I've been neglecting my Disneyland pics. There just isn't much time on vacation to do blog stuff, so here's some more.

Watching the fireworks from the best seat, our hotel balcony.

Walking to Disneyland in our HopeKids shirts.

Waiting patiently for mommy and Carter on Soarin over California.

The boys with Mater and Lightening.

Heres some from our dinner with the characters at Goofy's kitchen.

Carter, always flirting with the girls.

Dancing with Goofy.

I alway's wonder when characters stop and look at Jax for a long time, if they know someone who's downs or what. Chip stayed with Jax for like 10 minutes before moving on. You want to take the mask off and talk to them for a while. It was really cute. He kept giving him kisses.

More pics tomorrow. And for you people waiting for blankies, I am behind. But I have four that I will send out on Monday, and a couple more in a few days, so I'm catching up, don't fret.

Disneyland pics!!

Here's a couple of the boys swimming at our hotel, the Disneyland hotel.




Riding Small World.

Me, Carter, and daddy on Matterhorn. Carter's my only brave one that will go on the roller coasters.

Haven't seen a lot of characters around. But soon I will post pics from our dinner at Goofys Kitchen. Lots of characters there.

New vacation pics

Sorry its taken me so long to post. We are having so much fun at Disneyland I just haven't had time. Here's some pics at the beach.
Coloring Easter eggs at our cousins house in Simi Valley.

The best part of the trip so far, meeting miss Zoey and her family. Let me tell you, she is so much cuter in real life. So was blowing kisses to us left and right, and she loved Jax. She kept trying to grab him. The funny thing is, they could be twins. They are the same size, same hair color, and same cute little tongues.

The mommies and the warrior babies. I will post the Disneyland pics tomorrow. Thanks Heather for the great visit and sharing that sweetheart with us.