Weekend Overload

We've had a very busy weekend. Saturday we had some cousin stop bit to visit for a bit. Liam and Lanie enjoyed playing with Cass and Dakota. During the visit Grandma showed up with her little one Bella Nadine joined the fun. The kids had a blast playing outside. The swung on the swings, used the slide, played in the sand box and played with the dogs. I'm pretty sure the swing set was a huge hit. 

Later that day we took the kids to see their Uncle Andy and Tia Jen. They enjoyed seeing their cousins Chase and Kayla and playing with their dogs Jackle and Zues. 

Liam and Zues. Right after I snapped this Zues gave Liam a big kiss on the cheek lol 

Zues is gigantic in size and has a heart even bigger. He's gentle and playful. He's  got a kind and loving spirit. 

Liam and Uncle had a full on convo about NASCAR. Liam's favorite driver is Jimmie Johnson in the 48 car. When Uncle tried to get him to say Kurt Busch Liam have him a funny look and walked away shaking his head. We laughed so hard. 

When Uncle said Jimmie was going to wreck in Sundays race Liam got mad. "No no no Jimmie wreck" and he jabbered on and on. He was adamant that Jimmie would not wreck. Liam is Jimmies biggest little fan. We are going to have to figure out how to take Liam to a race and meet Jimmie. 

That night we BBQed and had a bonfire. 

Sunday we went back over to watch the NASCAR race where Liam cheered on Jimmie Johnson as loud as he could. "Go Go Go Race Jimmie" "Go Jimmie go". He watched the entire race. When someone wrecked he said "oh no! Oh no wreck! Oh no Jimmie wreck?" And he'd look heart broken for a minute until we explained no he didn't wreck. That blue car was not Jimmie. Then he'd say "whew!" And wipe his forehead. Wow Liam just wow lol. 

Liam also wore his squeaky sandals. Every time he took a step he'd squeak. This provided lots of entertainment for is girls because we thought it was adorable. Poor Zues was so confused on the matter. He'd look at Liam and sniff his feet then look at him again as if "it looks like a Liam, smells like a Liam but sound like a toy. What do I do?"  After a few minutes he decided it was best to walk away before temptation overtook him. He laid down and watched Liam as if he was thinking "just wait till I find those shoes laying around then it's on" lol. 

Liam met Landon for the first time today. Landon is the one month old son of RiRi who is basically like one of Tia's daughters. Liam saw Tia holding the baby and gave her this "what the heck?" Look then walked over to investigate. We all thought he'd get jealous. Liam looked at Landon and said "baby". We told him it was Landon. He stood their looking at him then petted Landon's head. We knew he was ok in Liam's book when he did that. So we decided it would be cute if he kissed Landon so we asked him too. Liam kissed Landon's head then smiled. That was a definite sign Landon was in good with Liam. After Liam just walked away like it was no big deal. He played with Zues some more then decided he wanted cuddles and crawled up into my lap. He played his car came on my phone then fell asleep. 

Right after Liam kissed Landon. 

Liam out for the count. This was taken around 5pm. It's not 10:15pm and Liam is still asleep. Which means he will be up at 4am ready to start the day. 

We normally stay home in quarantine making sure Liam doesn't get exposed to virus's, it's also easier with his tube feeds, but every now and then we really need to get out and do things. Staying couped up in the house can be frustrating. We all needed to get out and have some fun. Unfortunately the fun weekend probably overstimulated Liam and he will probably have a bad night later tonight or a bad day tomorrow. So far he's sleeping soundly and his ox sat is good. He did wake up once and realized we were home and started crying for uncle. After a few minutes he fell back asleep. 

Ugh feeding tube failings

3/28/2014

Liam was crawling off the couch and guess what...

His feeding tube gets pulled out. 

I don't know if he's just extra hyper today because he's exhausted or what but he's been wallering the furniture, using me as a jungle gym and running around like an absolute crazy boy. 

So he slid of the couch, looks down and back up at me and says "uh oh. Mom out mom out" and points to his button sitting there on the floor. 

I grab our little tool and proceeded to put it back in. I've never taken pics of the process before and since I'm always being asked how it works I thought I'd share. Thanks to Daddy I was able to get pics. 

Be warned though, the pics aren't pretty. They're pretty gross. 

This one it was it looks like right after the button gets pulled out. I use a rag and ripe off all the fluid and blood. The reason it bled so much was because he stretched out the stoma when it came out. 

Next I insert the little tool and flatten out the buttons barb just enough to go back through the tube. That's it! It's ready to go. 

I did put triumcunilone cream on his stoma and a tubie pad. I also wrapped his belly with an ace bandage to keep it in. 

I am irritated that it came out because Liam was on a break from having his belly wrapped. The wrap hadn't been off but 45min. Figures though. 

Feeding Liam: Bolus

Liam's day time tube feeds are done bolus. That means he gets a bigger volume of formula at one time. Liam gets 3 bolus feeds daily of 4 oz in one sitting. Here how it's done:

I hold the button firmly with one hand then insert the extension by making sure the line on the extension is lined up with the notch in the button. 

Then I turn the extension locking it into place. 

Next I connect the 60ml syringe to the large port of the extension. The small port we use for his meds. 

I start his feed by pouring in the first 60mls (2oz) into the syringe. At this point the extension is still clamped so I can get an exact measurement. 

Then hold the syringe up, unclamps the extension and let gravity do it's job. When the formula gets to the bottom of the syringe, I clamp the extension and pour in the last 60mls of Liam's feed. 

I let his feed run all the way then just sit there letting him vent. This allows has to escape. I also do this because sometimes Liam will burp or retch and end up vomiting if not. This way it all goes through the tube and not his mouth and possibly lungs. Liam usually only needs to be vented for 2-3min or so. The while feed process takes us about 5 minutes. Liam has been fighting it lately. He wants to eat by mouth but doesn't want anything. Luckily yesterday and today things started going better. He didn't fight the feeds today and he ate. 

Good news is he's getting high cal stuff. All his favorites. Bad news is it's all empty calories. Well mostly anyway. He loves apple sauce, Doritos, French fries and random other things. He's been refusing actually meals. For lunch yesterday I did get him to eat some top roman noodles. It wasn't much but it was something. He has his moments. His GI said to give him whatever he wants to eat to get him eating regularly then we can start working on types of foods he needs to eat. OT said the same. Me? I decided nothing will ever be perfect and I need to stop trying to make everything perfect and just work on one thing at a time. Gotta keep his tube feeds going and him tolerating them. And I have to continue to offer him food in hopes he will eat them. Like with all thing partaining to Liam, some days are better than others. <3

Sick Little Lamb

Little man isn't feeling well. Last night was horrible. He woke up at 1am crying with a stuffy nose and fever. He just wanted me to cuddle him. Liam pointed to my bed and with the saddest puppy dog eyes said "bed". 

Ok Liam, ok you can come to bed with me poor thing. I gave him some Motrin for the fever and benedril for his nose because odds are it's allergies. I rocked him for a few minutes then took him to my bed and cuddled him. 

Liam didn't sleep very well. He tossed and turned all night long. At 6:40am he decided he was done trying to sleep and crawled on top of his daddy and woke him up. Liam slapped his daddy's face and pinched his neck until he woke up. "Dad dad dad dad" he said. Finally we ventures out of bed and onto the couch. 

We watched cartoons and cuddled while sissy ate breakfast and got ready for school. Liam was heartbroken when sissy and daddy left to take her to school. He wanted to go so bad. 

When it was time to pick her up I just couldn't break his heart again. He wanted to go "bye bye" so bad. We all piled in the car to get sissy from school. Poor Liam didn't make the 10 min drive and fell asleep. 

He didn't wake up until we got back home. He almost got upset until he saw sissy then was happy. When we got back home I noticed Liam's fever had returned so he got more Motrin. 

He had to stay with daddy while I went to my appointment. Daddy said he was cranky the entire time I was gone. When I got back he was happy again. He played with his cars and trains. You know it's serious if he refuses to play with his favorite toys. 

Sissy did her homework then went to play. She cut out some pictures from an ad and made her own game. I'm still trying to figure out how the game is played. She's got an amazing imagination. 

Liam played on sissys bed and watched Frozen. That cabbage patch kid behind him is an original and was his daddy's when his daddy was little. We have the horse still too. Amazing. 

Today I worse turquoise for CDH awareness day/the last day of CDH awareness week. 

http://www.facebook.com/ShootingForLiam

It's been a hard day trying to juggle Liam's needs and then my own medical issues on top of his. I went and had a ultrasound today to see if the cyst on my ovaries have shrunk. Unfortuanately after 2 1/2 hours and 3 tries we had to just make another appointment. My bladder refused to fill past half full no matter how long we waited and how much I drank. Turns out I'm dehydrated and have to gulp water till my appointment. 

It was very painful to sit there that long and not allowed to go to the bathroom. Thanks to my bladder problems it felt like my bladder was full even though it wasn't. Hopefully at my next doc appointment he will order the test he said needed to be done. 

I let my health go when Liam was born with CDH. His needs and appointments took up so much time I had no time left to figure out what was going on with me. 2 years and 8 months I've let myself go and now in paying for it. Time to get better so I can take care of my babies. 

Flash Backs: Oxygen

Where we live you can see the Medical Hellicopter fly into the hospital and then fly away transporting whoever. It's very sad. They have a distenctive sound, unlike other copters. They fly right over our house and every time all we can  think is that there could be a baby fighting for its life on it. It's very sad for us. Our next thought was Liams last flight to UCSF how we stood there was watched them fly away with our baby boy and how long it would take us to drive to UCSF through a storm to get to him. It was a 5 hour drive through heavy traffic and heavy rain. The Bay bridge had flooded earlier that day and had been shut down for awhile. When we crossed it there was still lots of water on it as the rain beat down on the car. It was pretty scary. We didn't get to Liam until probably 9pm that night. That hospital stay lasted two weeks. Liam and I alone in a tiny portion of the room we had to share with another patient and had no privacy what so ever being right by the door. I litteraly had 2 feet of room from the sink to liams crib and the chair (pull out bed was there). Liam and I stayed cozied up cuddling all day long. It was a horrible stay. Liam had started desatting during shift change and his numbers kept getting lower and lower. He laid in my arms crying and miserable and in pain. I couldn't soothe him. I called for help 4 times then the mom of the patient next to me went to the nurses station and yelled at them to get their butts in there to help him. I will love that woman forever for that! A few minutes later a PCT (nurses assistant) came in and looked at Liam and ran outta the room. She came back with a nasal canula and hooked him up. Then she called the RT and doctors. I sat there crying because I was mad and devistated and nothing I did helped him. It took a few minutes but Liam's sats came up. They never did figure out why he needed oxygen but everytime they tried to wein they couldn't go below 1/4 litter. After two weeks of testing and unable to wein they decided it wasn't time to do his right diaphragm repair and that he just needed to stay on oxygen. Liam stayed on oxygen 24-7 from April 2012 to August 2012. It took a move back into the city to get him off daytime oxygen. Since then Liam still randomly needs oxygen. His Pulmonologist wants him on oxygen the minute his numbers hit 95 %. (Which is alot). His Puml, GI and Pedi all say its finnaly time to repair. His surgeon has the veto. Sorry about the tangent but thought I'd share more of Liam's past journey.

Attached by the cord

Last night I did a post on how I set up Liam's night feeds. Tonight I want to do one that shows how I get Liam ready. 

He is literally attached to the cord, or in this care tube, all night long. When Liam had a GJtube I had to worry about it getting pulled out because that resulted in a immediate trip to children's ( 1 1/2hrs away) so they could put in a catheter to keep the hole open. He would end up with an IV and have to stay until they could get him in to surgery to replace a new GJtube. Then they would keep him until he tolerated full feeds and gained so many KG per day. This would usually be a week long process. 

To avoid this I started wrapping an ace bandage around Liam's belly to hold the tube in. Yes Liam does have a Gtube now that I can replace myself but we want to avoid stretching the hole. We also don't want it coming out in the middle of the night and leak all over as well as take a chance at his hole closing. Here's how Liam gets ready for bed:

This is the top part of Liam's stoma. It's actually looking really good compared to past. 

And the bottom of his stoma. He just stopped antibiotics for an infection of the stoma. It's a little irritated here because Liam pulled his tube out today accidentally. This is how we start, with a clean stoma. 

After cleaning Liam's stoma I use triumcinolone cream. This help with all that red tissue you saw above called granulation tissue. It's shrunk his in half in just a few days. Sometimes if the stoma looks really irritated and is sensitive ill use neosporin with pain releaver in it. It really does make a huge difference. 

Now tonight I had to use this stoma paste stuff instead of the normal stomahessive. We're still waiting on his refull to get here. This stoma paste seems to burn Liam and it smells bad. Putting the cream around Liam's stoma actually prevents this paste from burning and irritating. I had to figure that out on my own. You'd think they're be a warning on the tube but there wasn't one I could see. Still it's the only stoma anything we can get at our local walgreens or any local pharmacy. Liam's regulate stuff, stomahessive has to be filled by the walgreens at children's hospital (1 1/2 hrs away) and sent to us. They are a specialty pharmacy that deals with the special needs stuff like this and know how to work with CCS. I love the stomahessive because is a powder that when it gets wet turns into a glue like substance. Liam's tube leaks a lot on ots own I apply lots of the powder and it works like a charm. It also is easier to remove than that paste. 

Next comes the split gauze. I prefer 4x4s over 2x2s because they seem to soak up more when needed. I place the gauze between the button and belly. The paste or stomahessive bonds the gauze to his belly. What I didn't get a pic of was how I put in Liam's extension the. Take more gauze and place it under and around the extension but above the button. This braces the extension keeping it elevated and flat. If I don't do this the extension pulls on Liam's button causing the hike to stretch and causing Liam pain. 

Lastly I wrap his belly with an ace bandage. The one shown I had cut in half because it was so long, then sewed it so it was wider and fit his abdomen perfectly. I also used Velcro for a fast way to secure the bandage around his belly. Ace bandaged are pretty cheap these days. You can even find them at certain dollar stores. Velcro is only a few bucks and you don't need much. Your looking at maybe $3 spend to keep in his feeding tube. It's amazing how $3 saved us many many hospital stays and surges when Liam had a GJ.

When Liam was hooked to his pump during the day we couldn't keep him cooped up. Thankfully the ace bandage had given him the chance to realize his tube was being pulled out before it actually happened. He ended up stopping before the tube would come out. Liam's night regimen is pretty straightforward and simple as can be for a tube fed child. 

Allergies

Are you freaking kidding me!! I called walgreens at children's hospital to have two meds for Liam refilled. Their specialty and only that walgreens will fill them. They call be back 5 min later to inform me CCS is no longer covering his biotin. That we have to go jump through a million more hoops to get them to cover it and they're behind by weeks on all that. I know for a fact that it'll take more than a few weeks because CCS takes months! They know Liam has a genetic birth defect called Biotinidase deficiency that requires him to have it daily. Without it the most severe case is it'll lead to seizures, coma and eventual death without biotin. His geneticist said he has to have it and CCS is being freakin dumb asses. It's a damn good thing I have a bottle I purchased two months ago over the counter when we were trying to get refills from his doc. If it isn't one thing it's another. Did you know last year the med supply co was going to charge us for his feeding pump because CCS was refusing to pay for his the feeding upon rental? That's how stupid CCS is! The life of a mom with a special needs kid :( #biotin #biotinidasedefficiency #ccs #cdhturquoise #cdh #cdhawareness #cdhsucks 

Pollen is horrible right now and I'm seriously feeling it. Sharp pains in my nose, ears, scratchy throat, migrain, scratchy skin, irritated eyes, and now asthma attacks. Going to the doctor tomarrow. Also found out that the gyno doc never put in the referral for the ultrasound! So now their trying to follow up on it. So sick of everyone dropping the ball when it comes to my family's health. I've started giving both kids their allergy meds hoping to keep symptoms away. Liam is taking daytime breathing treatments. He hasn't wanted to eat all day long. He has been happily playing in his room completely destroying it lol. He loves taking all his toys out. 

Lanie of course has been outside on the swing and playing in the sand table since she finished her homework. I can't seem to keep her I side at all so I made sure she got her allergy meds, both singular and benedril. Liam hasn't been allowed out side nor has he asked to go out. Atleast I'm not getting a fight from him lol. You gotta take the wins where you can get them. 

Liam loves to give himself his treatment. He's very indipendant about that. Hates it when I try to hold it. 

Liam is working on her sandcastle skills. Here she built a "mountain" with a smiley face. always helps when you have the right tools and an amazing imagination ;)

Willie (4 1/2 month old boxer) and Haro (11/2 year old "muttwheiler") guarding Lanie while she plays in the backyard. They are such sweet dogs. Haro is short and hyper and loves to be taken on long walks. Willie hates leashes and wants to give kisses constantly. These two are an odd pair. They rough house with each other. Haro is half the size of Willie but tried to bully Willie. He wants whatever Willie has even if it's the same thing you gave him. He doesn't want his. They get along great though. I think it's all a game to them. These trek hate being apart. Haro is rough with the kids. He's a jumper. He knocked Liam down two days ago my accident because he doesn't understand. He hadn't had much contact with Liam so he gets excited and wants to love on him. Willie having been inside the majority of the time until this last month knows better. He gives Liam kisses but stays calm when he's by Liam. Willie has been great therapy for Liam. 

#cdhturquoise #cdh #cdhawareness #allergies #asthma #puppylove #sand #architech #imagination 

Allergies

Are you freaking kidding me!! I called walgreens at children's hospital to have two meds for Liam refilled. Their specialty and only that walgreens will fill them. They call be back 5 min later to inform me CCS is no longer covering his biotin. That we have to go jump through a million more hoops to get them to cover it and they're behind by weeks on all that. I know for a fact that it'll take more than a few weeks because CCS takes months! They know Liam has a genetic birth defect called Biotinidase deficiency that requires him to have it daily. Without it the most severe case is it'll lead to seizures, coma and eventual death without biotin. His geneticist said he has to have it and CCS is being freakin dumb asses. It's a damn good thing I have a bottle I purchased two months ago over the counter when we were trying to get refills from his doc. If it isn't one thing it's another. Did you know last year the med supply co was going to charge us for his feeding pump because CCS was refusing to pay for his the feeding upon rental? That's how stupid CCS is! The life of a mom with a special needs kid :( #biotin #biotinidasedefficiency #ccs #cdhturquoise #cdh #cdhawareness #cdhsucks 

Pollen is horrible right now and I'm seriously feeling it. Sharp pains in my nose, ears, scratchy throat, migrain, scratchy skin, irritated eyes, and now asthma attacks. Going to the doctor tomarrow. Also found out that the gyno doc never put in the referral for the ultrasound! So now their trying to follow up on it. So sick of everyone dropping the ball when it comes to my family's health. I've started giving both kids their allergy meds hoping to keep symptoms away. Liam is taking daytime breathing treatments. He hasn't wanted to eat all day long. He has been happily playing in his room completely destroying it lol. He loves taking all his toys out. 

Lanie of course has been outside on the swing and playing in the sand table since she finished her homework. I can't seem to keep her I side at all so I made sure she got her allergy meds, both singular and benedril. Liam hasn't been allowed out side nor has he asked to go out. Atleast I'm not getting a fight from him lol. You gotta take the wins where you can get them. 

Liam loves to give himself his treatment. He's very indipendant about that. Hates it when I try to hold it. 

Liam is working on her sandcastle skills. Here she built a "mountain" with a smiley face. always helps when you have the right tools and an amazing imagination ;)

Willie (4 1/2 month old boxer) and Haro (11/2 year old "muttwheiler") guarding Lanie while she plays in the backyard. They are such sweet dogs. Haro is short and hyper and loves to be taken on long walks. Willie hates leashes and wants to give kisses constantly. These two are an odd pair. They rough house with each other. Haro is half the size of Willie but tried to bully Willie. He wants whatever Willie has even if it's the same thing you gave him. He doesn't want his. They get along great though. I think it's all a game to them. These trek hate being apart. Haro is rough with the kids. He's a jumper. He knocked Liam down two days ago my accident because he doesn't understand. He hadn't had much contact with Liam so he gets excited and wants to love on him. Willie having been inside the majority of the time until this last month knows better. He gives Liam kisses but stays calm when he's by Liam. Willie has been great therapy for Liam. 

#cdhturquoise #cdh #cdhawareness #allergies #asthma #puppylove #sand #architech #imagination 

Feeding Liam: Night Feed

Feeding Liam through the night in the past has been a exhausting thanks to feeding tubes. Most kids get weined off formula at a year old and start sleeping through the night therefore their parents get to sleep all night long. 

That's not the case with Liam Michael. He's 2 years 8 months and 11days old and am allowed the luxury of sleeping all night. 

Liam for the most part sleeps all night unless he's sick or suffering from night terrors , constipation or pain. Liam was a year kid when I realized I had been lying to myself that while first year about how once he turned a year Id finally get some sleep. I can laugh about it now. I was in denial back then. It was a coping mechanism to get through that really tough first year. I find myself doing the same thing about his feeding tube coming out. Some days it seems like it'll come out within the year because he's eating so well. Then you have days like today and yesterday where he doesn't want to eat. 

Sorry got off track there. In these past years of tube feeding I have picked up tricks that help me with his tube feeds. I thought I'd share how I feed Liam at night. The weather here in California is hot and formula can go bad faster when it's hotter. This poses a problem for pump fed kiddos. Feeding formula that has turned to your kid can make them very sick, something we want to avoid. Theoretically you should be able to put 4 hours for of formula into the feeding bag and it'll run through before going bad. Still it worries me because I feel that the pump doesn't match up with my math. 

I've had Liam's pump malfunction and not flow at the rate I set it at or the rate defaults in the middle of the night and the rate changes in the past so I don't fully trust it. (I have gotten the pump serviced when I see this). To ease my witting mind I came up with this little trick:

As you see in the picture stating from top left to right then bottom:

I have Liam's formula made up ready to go for the night. Formula is only good for 24 hours so don't make more than you need or you'll have to throw it out. There have been days in so exhausted that I forget what time if had made the formula batch the previous day and had to pour it down the drain. To avoid this I don't make more than I'll need in a 12-18 hour period and I store it in this Rubbermaid liquid bottle in the fridge. In the picture you see 45oz of formula. I love this jar. I haven't found anything else that has worked as well for Liam's formula. 

I full up Liam's pump bag and with it hang an ice pack. This helps keep it cold and from spoiling. I put the ice bag in a large ziplock bag and punch a hole in an upper corner to hang it from the IV pole. 

When I order Liam's meds that have to be refrigerated they send it in this bubble wrap covered in foil type thing with ice packs shoved inside. This is what gave me the idea. It takes 3 days for the delivery for store to my house and the meds are still cold like I've just taken thenm out of the fridge. And this is in he middle of summer when our weather is in the 100's and it sits in a hot delivery truck. I figure if it works for that then it's perfect for a 10 hour feed. I cut it so it opens like a book, punch a hole in the upper middle. Then I hang it and wrap it around the feeding bag and ice pack. I used to tape it every night but it was taking way too much tape to keep that up. I've cut two slit in the middle of the ends and used a posey to keep it close. A posey is what they use in the hospital to keep the pulse ox probes on the kiddos. You can use regular Velcro or string or whatever. As long as it stays closed your fine. 

I've had a lot of problems with Liam's extensions during night feeds. The med port like to pop open and Liam like to disconnect his feed with his toes in his sleep. This makes a huge mess that I end up having to clean in the middle of the night as well as bathe him. It makes out bedroom smell horrible. To avoid this I use tape. I take paper medical tape we get and tape both the med port closed and tape the feeding bag end to the extension. That way monkey toes can't undo it. AND because Liam had started chewing on the feed ports little rubber cap I also tape that down to take away the choking factor.

It was really scary when I went to get him outta bed one morning and stepped on the little balled cap. My mind wouldn't stop imagining the worst case scenerio. It would be extremely ironic if the very thing that has kept him from starving to death all this time ended up harming him (can't myself to say the worst case scenerio out loud or typed but I'm sure you it). 

I've also stated taking steps in decorating his set to. I drew that minion with a feedingtube. We live minions in this house and I thought it would be super cute. Still trying to come up with ideas for the pole and pump itself. Look forward to the post with pics ;) 

The ice pack trick has really come in handy. Since I've done that I've actually ha a few nights where I've gotten 3 straight hours of sleep. I get up and refull his bag once and the rest of the time it's meds, diapers or soothing him after a night terror. Let me tell you after a little over 2 years of being up every hour on the hour, those 3 hours are a blessing. 

Tonight when I told Liam it was bedtime he said "oook" and grabbed more cars than he could carry (he kept dropping them and getting mad). It was late for him, 9:30pm because he had fallen asleep around 3:30-4p for a nap and didn't wake up till around 6pm. There was no way he would have let me out him in his crib at 8pm. I had to let him burn energy first. 

Here's our sweet boy in his crib with his cars. This boy loves cars and trains. Thankfully hot wheels are only .89-1.00 each he loves them and wants more every time were out in a store and he sees them. It also doesn't break the pocket book! Lol. 

FYI did you know that not getting enough sleep caused irreversible brain damage? It's true. I heard it on the John Tesh radio broadcast and on the news. Scientific test show that not getting enough sleep causes brain damage that is permanent and side effects include memory loss. Pretty scary for me since I never get good sleep. 

Busy busy busy

It's been a busy day here between Liam's medial needs, need for attention, helping Lanie with her homework, cleaning the house, and trying to get an online business off the ground. I am exhausted. To top it off my allergies are reaking havoc in me thanks to all the pollen in the air. My eyes are so scratchy band irritated they're red. No joke. My breathing is taking a toll and my sinuses are burning. There's just not enlighten benedril and Claritin in the world for me. 

I have a sneaky suspicion all this pollen is taking its toll on Liam as well. He's been super cranky. He wants to eat but refuses everything I offer him. He cries for all his tube feeds even though he feel so much better after. I think I'll increase breathing treatments because in the past he's gotten cranky before we saw breathing problems. Last thing I want is to have to put him back on oxygen. I know all the pollen in the air is not good on him. 

On the plus side he's been enjoying the swing today. I've taken him out several times to swing. I have noticed that he doesn't last long before he gets overstimulated and wants out. We've had lots of cuddles today too. Liam just doesn't want me out of his sight. This morning he tried to dress himself. I laughed because this is how it turned out: 

Isn't he adorable lol

And here he is right this minute 

Right on too of me. 

I am so exhausted that as soon as I get this little guy to bed that I will be going as well. I'm praying for a uneventful night and a better day tomarrow for Liam. 

Tomarrow is the first day of CDH awareness week!! Make sure you spread awareness, tag your post with #cdhturquoise #cdh #cdhawareness 

Wear turquoise!!

If you send us your pics of you wearing turquoise you will be entered to win a Free floating charm locket!! Head on over to our awareness page and get entered http://www.facebook.com/ShootingForLiam

If you have Instagram you can follow us @truliefree

Also check out my new site I launched today. 

http://shopcherubim.wix.com/CherubimCharms

Sunday Surprise

Today we surprised the kids with a swing set daddy worked really hard on building. We also to the sand table up to help Liam with his texture issues. At first he refused to touch it because he didn't like it but after about an hour of using sand tools he started putting his hands in the sand just feeling it. That's pretty amazing and such improvement! 

We had a great Sunday!!

Liam is still fighting his tube feeds. He runs away when it's feed time and scream the entire time. They don't hurt he just doesn't like them and would rather eat by mouth. Problem is he's not eating enough by mouth yet to stop day time feeds. He is however gaining weight finally. He's actually getting chubby. His legs, belly and face. His arms are still skinny. I've seen many CDH survivors and all have skinny arms. A lot have little upper body strength as well. I'm thinking it could be a CDH traight. Most have messed up ribs like Liam and are skinny most their life's. Even adult survivors I have seen. His legs seem to have lots of muscle in them. We've been doing diaphragm exercises to help strengthen his. He's been trying to blow whistles and he's actually making good noises. He can't blow bubbles yet but we're working on it. It helps that his big sister tries to teach him all kinds of stuff by just playing with him. She's so good with him. He would follow her to the end of the earth and back he loves her so much. I'm so glad they get along so well. 

Coping

WebMD describes depression as intense feelings of sadness, and other symptoms like loosing interest in things you enjoy. WebMD has a great tool to help.

 I'm currently battling the worst of my depression and PTSD. This is my third round of meds trying to treat the depression and PTSD. The side effects were always so bad I just couldn't stay with the meds but WebMD says to stick with the meds, that it could take months to help. They also say to talk to your doctor because you could need a different dose.

WebMD says excersize can help. Thats great and all but I cant find the energy to do so, or the will to push myself.

This last few weeks have been so stressful, especially this last week that yesterday I was maxed. I was so stressed out over Liam feeding supplies still not being here that I shut down. One minute I'm sweeping the kitchen and the next I'm crying and cant stop. It was hard to breathe. I was taking these gulps of air as if I was a fish stranded on dry land. It took me 10 min to pull myself together and calm down. After that I just emotionally shut down. Even today I'm shut down. I'm exhausted and all I want to do is sleep (another sign of depression). I think another factor is my PTSD here. As I'm fighting for Liam's feeding supplies all I could think of was if I don't get his shipment he's going to end up back in the hospital for weight loss, breathing issues and they'll hold him until we get his delivery and he starts gaining weight. All those hospital stays kept running through my head. Seeing Liam behind those metal crib bars, the beeping, cold uncomfortable pull out beds. I felt cold down to my bones and Liams sad face kept showing in my head.

At that point I started crying. I felt like I couldn't keep doing this. Like I had nothing left in me to continue a life of this. And of course that made it worse because its my responsibility to care for Liam. Mine. He should never have to see his mother break down like that and neither should Lanie. I never want Liam to feel that this is all his fault, because he did nothing wrong. That was my last straw, the exact moment when I said no more and refused to wait any longer to begin treatment. I re-starting taking my Paxil and made an appointment with a doctor to make sure I should stay on this med as well as deal with my other medical issues.

I feel resigned to the situation. I have no choice. Things have to change. I'm so angry all the time over everything. I'm angry at every day things as well as everything from Liam being born with CDH and my painful pregnancy. I started having flash backs again and nightmares. So far they haven't been too bad compared to what I've had before.

My life has been one bad card after another since the day I was born, or probably even conceived. Its a very long story that I still don't want care to get into. I was so angry yesterday questioning how bad things could continue to happen to good people. Why on earth I keep getting the short straw when all I do is give and help people. So would the theory be that if I stop caring for others that good things would then happen to me? I highly doubt it. Besides my heart isn't wired to not care for others. I honestly believe its a fault. I will give and give until I have nothing left. This blog post is the last thing I have to give right now, in hopes that maybe somehow something I wrote here today will help someone else.

Yes I had a bit of a breakdown yesterday,

But today I'm still breathing.

Still here to tell my story,

Take care of my kids.

I think that says a lot.

Sometimes you just to let it go,

let it go,

shut down,

and start all over again tomarrow.

I'm taking life one step at a time right now. 

Today I will NOT care about tomarrow.

I will find something today that can make me smile,

make me feel good,

even if only for a few minutes.

Liam is 2 years and 8 months old now. Some days it feels like we were just in NICU yesterday. Every time Liam has a hospital stay I have to start all over in coping with everything. This last break between hospital stays was 8 months. Before that the longest was 8 weeks. It takes work, doesn't go away over night.

Potty Training Day 1

Well I finally broke down and started potty training little lamb. I honestly didn't feel he was ready but he's proving me wrong. He's sat on the potty 4 times today. The first time nothing but he really tried. The second time he tried hard again, really concentrating and he went # 1. The third time around he went #1 and #2!! I was amazed and very proud. And the fourth...nada. It hasn't been perfect. He's gone in his diaper many times today but I'm still proud he's trying. He knows exactly what the potty is for and he wants to use it. The knowledge and the drive is there but we will see how well each day goes. Justin thinks he will be potty trained by the end of the week. I laughed at him because its an unrealistic expectation.  Yes Lanie potty trained fast but every kid is different and Liam's been through a lot. I give him a month and he will he using the potty more than a diaper during the day. I don't expect him to be perfect. I expect accidents, maybe a few melt downs over said accidents. He's a smart boy so he will figure it out in his own time. 

To help Liam stay on the potty longer without getting bored and wanting off Justin suggested giving him a magazine. Normally I'd give him a book because that's why worked with Lanie. Only Liam's attention span is shorter so he uses his kindle to do puzzles during potty time. Hey it works!

Baby You're Sick

I should have known better than to think that Liam would escape Cold/Flu/RSV

season unscathed. It started about a week and a half ago with his allergies. At that time I increased his benedryl from just at night to every 6 hours to help combat the symptoms. I also tried keeping him inside. Problem was every time I turned around big sister or daddy had let him outside. Still he seemed fine.

But of course he had to go to a doctors office where I am sure he must have

caught something on top of his allergies. That or he caught it when we had to run out to the store. We've tried not to take him out of the house for this very reason. I know some of you probably are thinking that you can't keep a kid sheltered and secluded inside the house for that many months. Which we usually do from late September to at least April. We've tried very hard and you're right. It is pretty darn impossible to NEVER take him out somewhere along the way but we try. And we do this for his own health.

It seems to never fail. A soon as Liam gains some weight back, he gets sick, stops

tollerating full feeds and looses all the weight it took 6 months to gain. We are very blessed that he hasn't ended up in the hospital over this yet. This time last year, a cold landed him admitted in the hospital for at least 5 days minimum. Thanks to the synagis shot protecting him from RSV, when he caught RSV in January 2013 he was able to fight it off at home. Too bad they don't have something that works that great against colds.

I'm assuming he caught a cold but with Liam when his allergies get severe enough he has the same symptoms so it's very hard to tell. I know the last two night, last night more than the night before, was pretty bad on him. Last night he was up every hour on the hour. He ran a low grade fever and coughed the whole night. He was miserable. I gave him Motrin at bedtime, then again at 3 am and that kept the low grade fever away. Milk of Magnesia helped his upset tummy but not his diaper. I had to continue to change his diaper every few hours last night because it gave him the runs. Good news is it helped him tolerate 45 mls an hour of feeds. His normal rate is 80 mls per hour so you can be sure he's loosing weight as each hour passes. If I can just get that cough to subside he would be able to tolerate more.

Unfortunately he's not the only one in the house not feeling 100%. Big sister Lanie Bug is having allergy issues of her own. She has been very hard to keep inside. It's been a fight. She hates being inside, especially when someone is outside. Daddy has been outside all weekend working on the car and she wanted to be right there playing the entire weekend. Even though she felt worse that night from it. I told her this morning there was no way she could go outside today because she had school tomarow. That if she did she would get worse and not be able to go to school. Her eyes got huge and she agreed to stay inside. She hates missing school. If only it was that easy to keep Liam wrangled lol.

On top of no going outside, all doors are staying shut today so allergens don't come inside.
Have I ever mentioned how much I hate allergies. I too have been suffering. I finally figured out why my face kept breaking out. I am allergic to the concealer I was using. It's been a few days since I've worn any and my face it clearing up now. My nose and throat are suffering from the pollen and dust in the air. It's winter yet the last few days have felt like late spring/early summer. We had some rain last week but it wasn't enough to clean out the nasty air. I swear socal is the worst place for any with allergies or asthma to live. It's time again for the air purifiers to come out.
 
Of course with two "sick" kiddos, I've been on germ patrol. Lysol
everything. And in doing the sanitizing and cleaning everyday for the last week I've realized how very small our house is. With the kids getting bigger the place seems to be getting smaller. I thought as they got older it would be easier to keep the place clean and everything in its place but I was so very wrong. Instead the kids make more messes and getting them to clean up is a headache. Every little mess seems huge because this place is so small. This weekend I felt like the walls were closing in on me. I thought maybe we had too much stuff and started trying to figure out what we could get rid of. Then I realized that it's because we have no storage in this house. What I need is a professional organizer to come in and revamp everything or lots of money to do it myself lol. Our house didn't feel this small when we moved in.

Oh well, like in all things, I'll find a way to make it work.

In other news:
Liam is ready for a big  boy bed!!
Yep, you read that right.
Liam is ready for a big boy bed!!
hehehe
I love saying that.
My task today is to tackle Liam's room and organize it.We need to get it ready for a toddler bed,
and toys need to be picked up and put up.
Justin and I have to decide now if we're going to go buy him a character toddler bed from say Walmart or Target or if we just want to build a short base to put his mattress on so it's low to the ground for him and to just make it last until he is ready to be moved to a twin bed. To put a twin bed in his room would be difficult with all his medical supplies. I would have to store them somewhere else and we've already tackled the fact that this house is really small so there really is no where else to put them.

Anyhow,
I'm exhausted from lack of sleep.
Waiting for my coffee to kick in.

<3 aubin="" p="">

Medi-Port Flush

I realized today that I have never taken pictures or shared them of Liam's Medi-port flush even though he's had it for 13 months now. It's something I have to do every month but it's never crossed my mind to share. So today as it was the day to flush the dreaded medi-port it dawned on my to share the process. Well pictures anyhow.

Liam's Tubie Journey

Liam Michael is no stranger to feeding tubes. In his 2 1/2 years he has had many different types of feeding tubes. His very first feeding tube was while he was in NICU.

August 2011

 It was a short journey and lasted only long enough for him to learn to eat by mouth via bottle.

August 2011

 He mastered that quickly and was tube free at discharge.

August 2011, Last night in NICU

Liam seemed to be doing very well at home.

Then one day Liam started eating less and less.

It became impossible to wake him up to feed him.

Keeping up with his strict feeding schedule just wasn't possible.

Liam stopped gaining weight.

He started loosing weight.

The specialist at UCSF decided it was time for a feeding tube.

The NG tube was Liam's first tube outside of NICU.

Last week of September 2011. Mommy made his heart.

What should have only been a few days stay at UCSF,

turned into 14 days.

We had to be taught how to insert the tube without doing damage.

The we had to wait for Liam to tollerate feeds

and gain weight.

Finally he was able to go home again.

But home didn't last long.

After only 2 days of being home we had to rush Liam to Children's Hospital Central CA.

He wasn't tolerating any feeds,

vomiting profusely,

and had trouble breathing.

It was a long wait to figure out what was going on.

At first they thought he has caught a virus.

Soon they realized it wasn't a virus.

Liam needed an Nissen Fundoplicaton and a Gtube.

This stay took 4 weeks.

Last week of October 2011

After the Gtube came many formula changes.

Then it was time for a GJtube.

No one could figure out what was going on.

We went through almost every formula on the market.

March 2012

Things didn't get easier after he got the GJtube.

We went through so many ups and down.

Randomly Liam would start vomiting.

The vomiting would cause pnuemonia resulting in a hospital stay.

This kept on for more than a year.

In July of 2012 Liam's GJtube had come out and we had to use a Gtube until they could get him into an OR.

He did very well.

So well we had canceled the surgery and planned to stick with the Gtube.

On the 5th day of having a Gtube,

Liam suddenly started vomiting.

No one knew why.

He ended up with pnuemonia and hospitalized again.

They put the GJtube back in.

After continued vomiting issues and tollerance issues,

they finally figured out what was going on.

May 2013 the surgical team at Children's figured out the mystery that had been stumping us all for almost 2 years.

The question always asked,

"Why is this happening?"

was finally answered.

It was a miracle!

And a HUGE shock to us all.

The balloon in the Mic-key tube's (G and GJ) was too big for his stomach.

It filled his stomach so he never felt hungry.

The balloon would also hit his pilorex randomly,

causing the vomiting.

We also learned that he has a Hiatal Hernia.

(Still un-touched to this day)

They tried an AMT mini balloon less Gtube.

Within 20 min Liam was hungry.

He started tasting foods.

It was amazing the change.

May 2013

Once he got  this new tube Liam seemed to just thrive and make HUGE strides.

At the end of June 2013 he started walking.

Running.

Growing.

Thriving.

Liam hasn't had a hospital stay since June 2013.

It's been 6 months now.

What is an NG tube?

What is a Gtube?

What does an AMT mini Balloon Less Gtube look like?

What is a GJtube?