Monday, March 30, 2009

Trading idea's

I always get such great idea's from other moms with medical kids. So I thought I would share one of my travel idea's since I've pulled it out for my trip.
I bought an actual tackle box (I still need to cover up the ugly fish on the front.) But I use the plastic bins inside to store all of Jax medical garb. And I put his extra cannulas, feeding bags, and cords in the bottom.

The plastic bins hold everything. And you can make them different sizes for what you need. Here are Jax's.

I kind of feel like I'm losing my mind. I feel like I have so much to do but when I go to do it I just stand there like a complete idiot. We got a cargo holder for our car and I still don't feel like I'm going to have enough room for all of Jax stuff. I have a small concentrator, 5 oxygen tanks, his bag of feeding supplies, bag of medical supplies, his suitcase, his suction machine, his pulse oximeter. Ahh

Tomorrow he is having a CT of his head done. To see if the ventricles are enlarged. If they are, it will make surgery a little more urgent because its causing pressure in the brain. I'm going on vacation, so it will have to be when we get back. And I guess it will be discussed in the conference with the surgeons this Wednsday. Wow, maybe his cardiologist is finally getting the picture that we are not giving up on our baby, and we want his problems fixed. It would be nice to have an answer before we go. So we are not on pins and needles while we are gone. Keep your fingers crossed for answers.

A cute pic of Jax I just had to throw in.

Sunday, March 29, 2009

The rest of Jax story

Here's a quick rundown of Jax since that 4 months of hell we endured. I didn't want to leave anyone hanging thats been reading it.

He actually did really well in 2007, medical wise. The only thing was he wasn't developing and the siezures kept getting worse and worse. He was hospitalized a couple of times, for siezures and getting his g-tube. He actually got to were we could take off his oxygen for a few hours a day.

In January of 2008, he all of the sudden was acting wierd. He would just stare off, it was like a seizure but he wasn't moving. My pediatrician talked with nuero a few times and they just blew him off, so she admitted him herself. They got an EEG which showed he was in status, or constant seizing. This is very deadly, the brain cannot survive like this and he would die if it wasn't stopped. The only way to stop it is strong sedation drugs. So down to PICU we went and started him on propafol. They had to put him on bipap with this.

But that didn't work, so the only other option was a drug induced coma. To stop the brain activity and then restart and hope the status doesn't restart with it. The risks of this were huge. The coma itself could be deadly, it causes blood pressures to plumet, along with needing the vent to breathe. But we had to do it, there was no other way.

Needless to say from this pic, the coma was a nightmare, he reacted more than we ever thought he would. He blew up like a balloon, and he wasn't stable on the vent. The settings were maxed out. They mentioned the O word (oscillator) which is the high frequency vent, but our prayers must have been answered that day because they never had to use it. They kept telling us that the coma itself would probably take his little life, and if it didn't, the status could very easily still be there, I guess only about 20% actually stop. Yikes

But as he slowly woke up, it looked like the status was gone. We had started him on the ketogenic diet so we don't know what actually helped. He still has around 50 siezures a day, but nothing like he had before. Another miracle.

He has been hospitalized multiple times since, for various reasons. his nissen, respitory distress. In October 08 he had bilateral plureul effusions and had two chest tubes placed. Thats when the clot was found and they discovered that he probably had a clotting disorder. He has been on lovenox shots since and we don't know when that will end. He came home with a picc that time and that was a godsend because we didn't have to try to poke him to get labs.

He could go into status again at any time. So we just treasure each day with have with him. Because although we've never had to face it again, I don't know if we would do the coma again. I mean how many lives can one person have?Now we are facing another surgery, and I'm sure it won't be the last, but thats ok. He is still our little miracle boy.

Saturday, March 28, 2009

Blankie update

Hello there. I will post the rest of Jax story tonight. This is Malachi. He just recieved his blankie. Go to the blankie blog to read his story.I have few blankies that I have yet to get pictures from. Don't look away from the screen, you know who you are. All I ask with the blankies is a pic. Since I don't get to give them in person, I need a pic so I can see.
I just had a friend say that her little boy takes his blankie to all his appointments. I love it, I want something that kids can cuddle when they don't feel good, or cover their heads when they have to get poked.

A quick update on Jax. No word on what we are going to do to fix the SVC syndrome. His cardiologist talked to the hemotologist and said, we can do this and that with these risks. His hemotologist said, "what you need to do is discuss it with you meeting with the surgeons, come up with plans on how it can be fixed, and then let mom decide whats to risky". I love him. Between him and my pediatrician I think Jax is in great hands. His hemo doc also told him to look at it as if it were a normal little boy that had this problem. Don't think of the downs or the fact that he has a major neurological insult. That shouldn't matter. Yeah for him!!
We may be out of town when the word comes, because they meet every Wednsday, and this Wednsday they may not be able to squeeze him in, so it may be the following Wednsday, when we are at the beach. Wahoo!!

Friday, March 27, 2009

Jax story part 2

Ok, I'm going to try and remember these next four months the best I can. It still seems like a blur, I may have to refer to his medical records. Ha Ha. There are things I will leave out, like multiple ct scans, MRI's, and placements of central lines and art lines, there are just to many of those to remember. I also forgot to say his heart defect. The typical T21 defect, complete AV canal, PDA, and pulmonary hypertension.

One day after we came back from California, Jax went back in the hospital with respitory distress. That was April 17, 2006. He stayed on the floor for a week, gradually getting worse and worse. From 1 liter oxygen to 3 to 4 to one night 10 liters by mask. That night I was getting very irritated. What does it take to send this kid to PICU? The residents picked their noses and just waited around. It wasn't until the cardiology fellow came by and freaked out because he was still on the floor. So then we were running to PICU. They imediatly put him on c-pap, but they waited so long that he only lasted about 10 minutes before they had to intubate him. They said it was pnemonia, and he was going into heart failure ( he was unrepaired)

He stayed on the vent for one week, but when they extubated him, he only lasted 8 hours before being reintubated. To save space, this happened 3 times that during a month and a half. He was finally extubated and went to the floor in May, but that only lasted 2 days and he was back intubated. On May 16 he had a heart cath, were his cardiologist attempted to block his PDA, which they said was huge and could be causing his respitory failure, but he wasn't able to block it off. He continued to get line infections and everything else you get in the hospital. When he was finally infection free we begged them to hurry and repair his heart before he caught something else. It was obvious we wouldn't get him extubated until then.

They scheduled surgery for June 12, and then the night before he spiked a temp and it had to be cancelled. We were devestated, would I ever get to hold my baby again? They then found that he had a chylothorax, or fatty fluid in his right lung. A chest tube was put in. Then they decided to do surgery and close his PDA, it doesn't require bypass, so they did that in hopes of getting him extubated. Of course it didn't work. On June 25, he had a hypoxic brain injury. I got to the hospital about 9 in the morning, and I could tell something was wrong. He had a high fever and his heart rate was in the 200's. Just then the lab called to say his glucose was 17. WHAT. How do you let his glucose drop to 17? Thats when I found out they had stopped all of his IV's because he was bleeding from them. Hello, then a few minutes later his temp went to 42.7, which is 108.0. Then the doc had no idea what that was in farenheit. I had to tell her. Then the cooling methods finally happened, but by then, his brain was fried. It was the combination of the two that caused severe brain damage. His cardiologist asked if we still wanted to fix his heart. It was horrible. His eyes would just wander like a blind persons, and he wouldn't move at all. Slowly after a few days, he started to come back around. We were not giving up on him yet, he had made it this far.

It was then decided that he couldn't have his open heart for two weeks because the brain had to heal. So they did another surgery to try and stop the fluid leaking in his lung, a thoracic duct ligation. A few days after that we finally got him extubated, Yeah. They kept him on bi pap to avoid having to reintubate him before surgery. 10 days he stayed on the bi pap. Here they took him off long enough for me to hold my baby for the first time extubated in 3 months, it was heaven.

On July 18, he had his open heart. He did fabulous. He had to stay on the vent for 9 days because of his already sick lungs. But then we finally got him healthy enough to come home. That was Aug. 7.After 4 months, 8 times being reintubated, 4 surgeries, and like I said, many lines, scans,echos, you get the picture.

Once again, I'm going to stop and I'll finish his story tomorrow, that 4 months alone takes up a lot of space. See you then.

Thursday, March 26, 2009

A step back in time

I found my picture box yesterday, before the digital camera age. I found baby pics of Jax, and I thought since I had so many new friends I would tell my story of having a DS baby.

We didn't know Jax had DS before he was born, they didn't even see his heart defect on ultrasound. But I will tell you he was a stinker before he was ever born. My first 3 pregnancies I never stopped working, I even danced up until I had them, but with Jax, my pregnancy was horrible. My iron was so low the entire pregnancy so I was always light headed and dizzy. At 35 weeks I went into the hospital in labor, but it went away so I went home. Then at 37 weeks, I got so sick, it wasn't the flu or anything, just a high fever that made it impossible for me to eat or drink. I think it was an infection, anyway, they gave me 6 bags a fluid and sent me home. The next day I went into labor. Needless to say, it was horrible. Besides the fact that I hadn't eaten or drank in a week, now I had to try and have a baby, huh. Then his heart rate would drop soo low, and I wasn't dilated all the way yet. So they tipped my bed so my head was way down, and started prepping me for C section. They were actually pulling my bed away from the wall when they checked me one last time and I was a 10, so we hurry and got him out (thankfully avoiding a c section) As soon as they put him on me I could tell he had DS. They took him and cleaned him up and then let me hold him just for a minute because he wasn't breathing great. While I was holding him I said, he looks downs. Of course the nurses didn't say anything, but after they took him away I told Ray I thought he had DS. That was Nov. 20, 2005

The nurse came back in and said that they usually like to have my doctor here to tell me this, but he had left, they said they thought he had down syndrome, and I said I know, I could already tell. That was it, no crying, nothing. I didn't care at all that he has DS.

I was very lucky because it was Sunday and my pediatrician just happened to be on that day. She said that he probably had heart defects because he wasn't able to hold his sats up. The funny thing was, I worked at the childrens hospital, with heart kids, so when she told me the defect I already knew what it was. I think I was very lucky that way. I didn't hit me as hard and didn't scare me as much because I see it every day. The next morning the life flight team took him to the childrens hospital NICU.

He did really well, he stayed for eight days. Had the billi lights for jaundice, and we tried to bottle feed him, but we knew he would be coming home with all the bells and whistles. I already knew how to place an NG tube, so Ray had to learn, and let me tell you, he was a pro, and he was so proud and bragged a lot that he could do it.

We brought him home Nov. 29, 2005, and he did really well at home for a month. He was home all of Dec. and we had a great Christmas. In January he went in for 10 days with RSV, and in Feb. he went in for 2 weeks with respitory distress and went back and forth to PICU. He was home all of March and we got in a Disneyland trip, little did we know that only 1 day after we got home our world would be turned upside down.

Are you in suspense? I will finish the story tomorrow, I don't want to take up to much space with one blog, but thats how we had Jax, our little angel here on earth.

Tuesday, March 24, 2009

Is is Monday?

Today has been so crazy it feels like a Monday. Jax OT came this morning, then after I got Carter and Jax and myself ready for the day, I had to take Carter to school. Then I had 1 hour to go three places. Yikes, so yes I was running like a madman. I was on my way home when Jax preschool teacher called and said "Are you home? I'm at your house." So I didn't do to bad. Then after she left I had to go pick up the boys from school and get started with dinner.

Whew, done.

I'm going in on Thursday to see the surgeon about Jax g-tube. Ever since they redid his nissen in Febuary, it hasn't been working right. We've changed sizes around, and it will work good for a few days, and then it will leak all over his clothes. Plus, the last three mickey buttons we had only lasted a week before the balloon leaked. My insurance only pays for 4 buttons a year, we are on number 4 and its only March. I don't think I should have to pay for a button that lasted a week, it sounds like faulty buttons to me. Hopefully we can figure something out Thursday.

Jax OT hasn't seen him for a couple of months because every time she schedules he goes into the hospital. Today she asked me if he was on prednisone because of his fat little face. Nope, its the SVC syndrome. These pics are from today, its hard to see, but he definitly has rounder cheeks and a double chin. but his legs are still skinny, chicken legs. I haven't heard anything yet about what the plan is. I'm anxiously waiting.

I have a couple of Blankies that I'm waiting for pics on. I will let you know when I post them on the blankie blog.

Monday, March 23, 2009

How do you explain the R word?

My 10 year old is in this sudden habit of using the R word, I don't know where he heard it, but its caught in his head. Every time I try to explain why you don't say it he doesn't seem to understand. Today when I picked him up from school he asked me, "Mom, is Jaxson mentally retarded?" I guess he had a discusion with a girl at school that knows Jax is DS. He seemed to understand it better from a girl his own age than his mom. Maybe I spend to much time trying to say it in words that he will understand, and the girl already speaks his language, I don't know, but it definitly helped.

Jax saw his hemo doc today. He said that he definitly has SVC syndrome, or swelling in the face and arms from the SVC being narrow. The only way to fix it is either in the cath lab, or open heart surgery. He said he was going to talk to the cardiologist. I don't like that idea. The cardiologists are the ones I hate the most at the hospital, they do nothing for Jax. And his hemo doc today gave me an idea why. He said that he has a quality of life so we need to fix this problem. I don't think his cardiologist thinks he has a quality of life, afterall, when Jax had the brain injury he was the first to say we didn't need to fix his heart because he wouldn't survive.

We are finally getting something out of Jax, a stronger head, a little bit of a smile, we can't give up on him now. He's come so far. I'm glad that my pediatrician and hemo doc are on my side, they are willing to fight with whoever they need to. And I'm going to call the palliative care team that follows Jax because they are patient advocates as well.

They are going to message the cardiologist that does heart caths and see if it can be done there, if not, we are looking at open heart surgery, probably in the next couple of months. I will do it for him, because he did great last time, he just needed longer on the vent, because of his lungs, but did great.

So we are going to go on vacation, and enjoy it a little more, knowing that when we get back there will be surgery, either a heart cath or open heart, we'll see.

Saturday, March 21, 2009

Hello to all

Happy world Down Syndrome day to you all. And happy Twilight day to all you Twilight fans. Got my DVD already.

So it seems most people feel how I do about saying downs. Anytime they call Jax by anything but Jaxson its insulting. He has his own personality, likes and dislikes. If I want to mention something about down syndrome I don't think downs is terrible.

Anyway. Monday I take Jax to his hemo doc for the first time since our horrible hospital experience. My pediatrician has already talked to him about what she feels and what she wants to check. He has lost a little bit of weight but he's still 20.4 lbs which is huge for him. He's never broken the 20 lb mark in his life. So its not good weight, its all in his face and upper arms. His legs are still his little peg legs. My pediatrician doesn't know what a good way to fix his narrow SVC is. I told her if they can stent it in the cath lab that would be no biggy for Jax. She said she didn't think they could do it in the cath lab, that it had to open chest. Yikes, we weren't wanting that again quite this soon.

He did really well after his last open heart, so I think he would be fine, but you just never know, expecially with the heart. There's always that chance that they heart will be naughty and ECMO would be needed. We won't think of that. We'll see on Monday what they think. He's really not being effected except for the puffiness. But that is the main vein that feeds back into the heart, I want it working the way its supposed to.

Countdown is on, 12 days until vacation, wahoo. The bad part is, Carter's baseball games start the day we leave, and he will miss 5 games, yikes. I always forget that baseball starts so early in the spring. I have to go on vacation when my kids go offtrack so they don't miss school. So we are leaving Friday night instead of Friday morning so he can play his first game. Then he will miss the next four games. But we won't be thinking about that in sunny California.

First its Legoland and Sea World, then a quiet few days with family and to meet sweet little Zoey and her family. The beach of course, then off to Disneyland for 5 days.

Pray that Jax is not naughty so we can enjoy a much needed vacation.

Friday, March 20, 2009

Opinions needed

First I have to show you this picture. This is sweet little Dillon. He had his g-tube placed this week, and he made sure his blankie was by his side. Soo sweet, I love it and I have been bombed with new requests, its awsome, it means the word is getting out. I've had to get a couple of other people to help for a while.

Ok, I need everyones opinion. A friend the other day said that a mom of a DS child told her that some people get offended when other people call them downs. Does this offend any DS moms? I say downs all the time, its just my way of shortening down syndrome when I'm in a hurry, kind of like DS. It doesn't bother me at all and I don't think there is anything derogetory about it. What do you think? I want to know because if people don't like it, I will stop using it. But then what about DS? Is that ok?
Oh we can never win sometimes, I guess whatever we say may offend someone out there.

Thursday, March 19, 2009

Jax new ride.

We got Jax fitted today for his new stroller. Its a lot like a wheelchair, but its cheaper and it looks a little more like a stroller. It will take about 90 days to get it in, but we are super excited because we can put the oxygen on and it will help him sit up better. Also because its cheaper than a wheelchair, there's a chance the insurance will approve a base so you can take the seat off and use it in the house. When these kids start to get bigger but can't sit up, there's not many places except the floor to put them. This will help him sit up in the house.

Also, go over to the blankie blog to meet this sweet girl, Ava. She is the latest blankie reciever.

Wednesday, March 18, 2009

Look what I found.

Look what I found. I stole this pic from my sister in laws facebook. This is pre brain injury. He was about 3 months old. He's not much bigger now, though his face looks like a little boy instead of a baby.

And look what else I found. This pic is my oldest, Raymond, who's almost 11. The one below it is Jaxson. They could be twins. The difference is I combed Raymonds hair and Jax I just let be crazy like it always was.

Keep your eyes on the blog for a couple of blankies that are on there way. They are super cute one's. One we used a different thread and it turned out so cute. I will let you know when the pics are up.

Tuesday, March 17, 2009

A little Jax

I tried to take a pic of Jax sitting up so good on the couch. I only got one pic before.....

He tipped over. Nice try big guy.
Seriously mom, get the camera out of my face. It was so cute I had to take a couple before helping him up.

I am so pleased with the progress Jax is making. Its slow, real slow. He had the brain injury 3 years ago in June, and we are just getting to were he holds his head up for a few minutes. Or we can prop him on the couch and he'll sit straight (even if only for a second).

We never thought we'd get to this point with him. Ray told me for the first time about a year ago, that when Jax had his injury, he wondered how he was going to afford to bury his son. I had no idea he had those thoughts. We were in such sad shape, financially, emotionally, and everything in between. Then he did so well at just staying fairly healthy for a year, when in January 08 he went into status and we almost lost him again.

Yesterday me and my friend Julie were talking about how stubborn our kids could be, and she said, if they weren't stubborn, they wouldn't be here. And thats so true. If they weren't stubborn and showed the docs what they could do they wouldn't be here today. Wow

His therapist's don't think he'll ever walk, and if he doesn't, thats ok. But we will never stop working towards that and keeping faith that someday, he will walk.

Oh and for those of you who wondered. I don't know if the vicks on the feet did work. If it did, it took a good 45 minutes. My doc said it won't do anything, but I think those home remedies work in ways the docs don't know about. So I will keep doing it if he wakes up coughing.

Sunday, March 15, 2009

A great opportunity

I got an email from a friend about a little boy that was here in Salt Lake on vacation and ended up in our hospital. She asked me if I had a blankie already made that I could give him and I had one. So I got to go up personally and give this blankie to him. It was so nice because the blankies usually get mailed and I don't get to do it personally. His mom is trying to get him life flighted back home because he could be in the hospital for a while. Go over to the Blankie blog and meet him and sweet little Phoenix that got his blankie yesterday.

Nice redeye that I forgot to take off this pic. This is Jax in his new monkey jams. Aren't they so cute.

Jax has not been waking up crying since we propped his bed up a little. But he has been waking up coughing his head off. If its not one thing, its another. I tried albuterol because when my asthma kids get coughing at night the albuterol helps. But it didn't help him. I'm going to try vicks on the feet with socks on, I heard that from another mom.

Friday, March 13, 2009

A Jaxson plan

Happy Friday! We have a thought on what might be causing Jax to wake up crying at night. All the puffyness in his face and neck is still there, and I guess its in his head to. It may take a couple of weeks to go down. But if he lays flat in bed there is a good possibility that he is getting headaches. Once he's in his swing were he's a little upright, then he sleeps fine. So we are going to prop his bed up with phonebooks tonight and see if this helps. If this puffyness doesn't go down, they may have to consider surgery or a way to open up that SVC vein.

Do you think I can get this boy to look at the camera? No way hose'. His therapist was wondering the other day if some of his not looking at toys is just being stubborn. A downs kid stubborn, no way, ughm. (Other downs kids moms are laughing)

There's a pretty good look, momma.

Also to all you out there, I had a blankie request come through on the blog. If its you, I need an email address to get a hold of you, the first name of the kido was Tristan. I'm hoping its not a prank already, If I don't hear back in a couple of days I will assume it was a prank. But I want to make sure if its real that the little boy doesn't miss out, so if you know Tristan, tell them to do another form with an email address.

Thursday, March 12, 2009

Who needs sleep?

This may become Jax permanent bed.

This is where he ends up every night for the past week. I don't know what his story is. He used to wake up several times a night but he would just lay in bed and look around before finally going back to sleep. Then we found the sleep apnea and we turned his oxygen up at night he started sleeping all night. But now he wakes up crying. I turn on his mobile and he'll stop for a few minutes and start up again.
At first I wondered if he was not sleeping because he'd been in the hospital so much lately, that it was messing him up. But its been to long for that. It could be that he's not pooping good lately either. He won't go at all without a suppository. Thats not good because eventually we are going to ruin his heiny.
Good news though, as of tomorrow we will be on full bolus feeds. Yeah, we've been moving up really slow because he's been on continous for so long.
I'm waiting for a few blankies to reach their destinations and then I will let you know that they are posted on the Blankie blog so you can meet the cute kids and see their blankies.

Wednesday, March 11, 2009

Cardiology appointment

We had Jax cardiology and echo today. His echo looked really good for him. Both valves are leaking like always, but the left side that they thought was leaking more is not. Nothing that needs to be taken care of right now. They really didn't measure his pulmonary pressures. Which I know their not looking for that, but why not check it while your in there. But he calculated it to be around 40, which is not bad at all. We are going to get rid of a med to. Yeah, one down, about 12 to go. His heart is pumping really strong so he discontinued his Enalipril. They also didn't see any clots in there. So the narrowing of his SVC is from old clots. This is all great news because I can go on vacation and feel like he is ok. I mean you never know with him, but I do feel better about going knowing that he's not clotting on blood thinners. They think that having RSV just wreaked havoc on his heart and the SVC vein and make everything back up into his neck. Even though he handled the RSV better than I thought he would, it makes his heart work harder and enlarge.
Jax getting his echo

Its kind of hard to see but if you look close you can see Jax new medical bracelet. Its super cute, and if fits his tiny hand.

Don't forget to go over to the Blankie site and request a blankie for a child you know. My heart is bursting because people are donating to the blankie fund. This helps us so much, to give the blankies to the kids. But I need some more requests, I haven't had anyone use my form on the blankie site yet, come on, I figured that out all by myself so go use it!!

Monday, March 9, 2009

I'm freaking awsome

First let me get my gripe of the day out of the way. This super sweet little girl Libby, who was born with multiple heart defects, was supposed to have open heart surgery on Wednsday. I just finished her blankie so she could get it by surgery, but her mom just emailed me and said their insurance won't cover her surgery. What the hell (pardon my french, but I'm very upset)
How are these companies getting away with not covering children? This is a lifesaving surgery. We all need to write to the president or something so healthcare in this country will get fixed. Like I've said before, NO CHILD SHOULD BE WITHOUT COVERAGE, PERIOD.

Ok, I'm done ranting, now listen to this. I figured out how to get the form on the Blankie blog.

Yeah, me the computer moron, figured it out all by myself. Aren't I a big girl now? I think I deserve a treat.
So if you know of someone who needs a special blankie, hop on over to and fill out the form.
As soon as the next blankie reciever sends me a pic I will start posting on the blankie blog so you can see them.

And my cute little Carter had baseball tryouts on Saturday. He is six but he's playing with the seven and eight year olds because he rocks. Yeah, I'm a proud, bragging mommy.
He was drafted by the Diamondbacks ( I wish he was getting their pay). And I can't wait for the games to start, if it ever stops snowing here.

And also, we got our mickey button this morning so we are back in g-tube business.
Have a great week everyone.

Sunday, March 8, 2009

A little bit of g-tube drama

I'll start from the beginning of the story. When Jax had his nissen redone on Feb. 4, they put a new g-tube in. They put in a 14 french, 1.5. Well he normally has a 1.0. A 1.5 is way to long for him. It was leaking all the way through his clothes. So we moved him down to a 1.2, I told them he needs a 1.0 but they said we have to try it. Whatever, so the 1.2 was leaking too.
So when he was in the hospital last weekend the stoma nurse ordered me a 1.0 and we put it in. It hasn't leaked since. Well this morning when I went to change his dressing his button came out. The balloon was totally deflated. So I checked it and sure enough there was a hole in the balloon. The only spare button I had was the 1.2, so I put that in. I hadn't had a chance to order the 1.0 yet. Usually a button last's him around 3 months, so when it came out in a week I wasn't prepared.

So when we are at the grocery store I notice that his shirt is soaking wet. The button was leaking all over the place. So when I got home I dug into my g-tube emergency kit. I have like 6 of them because they have a new rule at the hospital that anyone with a g-tube needs to have an emergency kit taped to their bed. I take them all home with me. We had to put the foley catheter in until tomorrow and I can have them bring me out a button.

Isn't it lovely?

And since our clothes were soaked we got to spend the rest of the day in our jams. Thats ok, its Sunday.

Last night Jax played at his aunts house while we went on a date. She got some really cute pics of him. I will post them when she emails them to me.

Friday, March 6, 2009

Naughty naughty baby

This is where our oxygen is spending most its time these days.

So guess what we got to wear for a while today.

Hopefully that will detour him from pulling. or maybe not.

Look at this bruise from his shot. I wanted to do it in his arms because his poor legs already look horrible. But this is the worst bruise he's ever gotten from the shots.

Jax has an appointment next Wednsday with his cardiologist. He's going to do an echo to check his function and check for clots. Other than that Jax is doing great. He still looks puffy in the face and his oxygen need is still a little higher, but we can deal with that.

Sweet little Charlotte's mom just asked me if Jax could use Charlottes wheelchair. How can I not just cry. Charlotte barely passed away 10 days ago and her mom is trying to better other people's life's. We are going to go look at it and see if it will work for Jax. And of course when Jax can't use it anymore we will find another family in need to give it to. Thank you so much Erin, I only hope to be as strong as you are.

Oh and also I wanted to share what I found from another mom. Alex, who has HLHS, his mom showed me this great website that has kids medical bracelets. This is the cool one I ordered for Jax. They are soft and they fit our tiny kids hands. The website is You can also have them engraved on the back, go check it out.

Thursday, March 5, 2009

Blog up

Jaxsons Blankies for Babes blog is finally up. Go check it out. I don't know how to write one word and link it.

There are still some gliches though. I still need to figure out how to link the request button to a the form to fill out. (If anyone knows how to do that, let me know PLEASE)

So for now just leave a comment on the blog.

Here are some pics for you new people who don't know what this is. If you have or know a kido with life threatening illness. Leave their name, age, sex, a little history, and stuff they like and we will make them a special blankie. Here are a few recievers so far.