Up All Night

Let's face it. The morning after a sleepless night just plain sucks. Thanks to little lamb and absolutely no help because let's face it I'm superwoman (I wish!) I got very little sleep. Liam was up at 2am and wouldn't go back to sleep so we ended up camped out in the living room watching cartoons. Every 10 min or so he'd hand me the remote to change it and if I didn't he screamed at the top of his very very loud lungs. What a lovely way to spend the night. Liam fell asleep for about 20 min until I tried to move him back to his bed. Boy was that a mistake at 6am. He threw a fit and we had to return back to the living room. I being completely exhausted had an outburst of anger and complete despair. I told my self out loud FML. Then was told by hubby to take a chill pill. The same man who slept threw the entire night of crying yet hears my little outburst. Hmm. I took the high road and just walked away. If I had said something it would have been cruel and mean and I somehow mustered the strength and will power to just walk away. I am praying that today will be better even though I am exhausted. I have to "suck it up" and make it through Brightstart and PT and everything else the world has planned for me. No crawling under a rock today. 

#exhausted #cdh #cdhawareness #cdhsucks #upallnight #angry #justleavemebe #iwannabehappytoo

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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. 

Liam's Sick Again

Liam has been sick since mid-December. His pedi diagnosed him with a sinus infection on Jan 2nd and he has been on antibiotics since. He hasn't been tollerating night feed even at 35 mls per hour. I had stated doing boluses of blended diet through the night just to give him more cals since blended diet was all he's been tollerating. It's been rough on our little guy. 

Liam had another cranky day today. That's two days in a row now that he's seemed miserable. Lots of whining and lot of cuddles. Even from daddy who says Liam's just being a whiner and we need to my baby him. Hahaha funny daddy! I caught him in the act of coddling our little one.  You've seen his face! It's impossible not too. I felt like I had a tail today because he would follow me from room to room and just watch me and randomly grab my leg and hug tight and say "moooommmieee" I pat his back and say "Hi baby" or "yes Liam" or "love you too buddy" and he'd let go and continue to follow. It was really sweet. One he asked "moooommmieee up" so I picked him up and carried him into the living room where we sat on the couch and cuddled. After maybe 5 min he was ready to walk away from me for about 5 min the. He became my tail again. He melts my heart. This continued until about 6:30pm when he lost the battle and fell asleep on the floor with my fuzzy pj pants that he decided to carry around all day today. I laughed when he walked out of the bedroom with then held tight in his little arms. He looked up at me smiled and had laid his head down on them and said "aahhh". He has this new thing he does when he's hungry. He grabs his tube and says "eat". When I was preparing the syringe of food I let him stand on the step stool in front of me because he likes to watch now (also a new thing) and today I opened the container of blended diet and he immediately grab the syringe and sticks it in the container. Daddy was shocked and I just laughed. Liam already understands that the tube goes Ito his belly port and that the syringe goes into that port so why wouldn't he pick up that tr syringe has to go into the food first. Silly boy wants to do it all himself now. I applaud his smartness. It really shows that he understands how things work. Another he now likes to do is hold your hand while you walk. Even though we're just going to go grab a diaper and change him or go sit to do a feed, if its something for him where he knows he has to go he wants to hold your hand. I love it. Unfortunately the diaper rash from the antibiotics got bad and I did everything I had on hand including nystatin from his last rash. It didn't help. I went to the store today and got A&D ointment and after one use it looked 100x better! No bumps, not as red or as large. So happy I decided to try it. Liam hasn't been coughing anymore than he normally would. That icky cough is gone for about 2 days. No running nose either. I have him on the feeding pump right now at a reduced rate of 55mls per hr. praying he tolerates it because he gets more cals in the long run at night this way. If he tolerates tonight ill increase it tomarrow night. We also haven't been letting Liam outside the past few days because of the air quality. I've gone out to the store a few times this last week and I'm so stuffed up from it. Liam does NOT need to be out there. Also more good news no extra breathing treatments have been needed over the weekend! So happy little lamb is feeling better. 

Liam coloring:

Joyful and Triumphant

2013 has been a

Joyful & Triumphant

year for Liam...

And the entire family.

Liam has made so much progress

and has grown so much.

God has been VERY busy

healing our Little Lamb.

We started out the year

with Liam struggling to walk.

He couldn't walk on his own,

let alone stand without assistance.

Still he was happy,

and playful.

The year started out rough.

Liam wanted to crawl everywhere,

but he was hooked to the feeding pump

20 hours per day.

Liam was approved for Physical Therapy.

His PT realized he has low muscle tone in his ankles.

She figured that was the reason he couldn't walk at age 1 1/2.

IFO's were recommended.

And thanks to a generous donation

from a prayer warrior,

Liam was able to get his IFO's.

Still is was a struggle.

We did leg strengthening exersizes daily.

He soon was able to walk holding onto things.

He climbed before he could walk.

Even learned to climb out of the walker

making is unsafe to use.

Which in turn made it very hard

to keep him from pulling out his feeding tube.

Liam wanted to walk so bad

and was so determined

that he even started spider walking. 

He'd stand on all fours,

and his head,

and "walk" across the room.

Then one day out of the blue

we were at the doctors office for a routine visit

when Liam stands up

using the wall to do so,

then starts walking down the hallway.

I sat there shocked.

Then I remembered to grab the camera.

I videoed Liam walking all the way to the back.

It was amazing!

This video was taken the day he decided

he wanted to walk.

May 28th 2013

http://www.youtube.com/watch?v=FKGn2iRiUmQ&feature=youtu.be

It's so hard to believe

that its only been 6 months.

I remember swooping him up into a big hug

right after I videoed him,

then I cried.

I cried again on the way home.

And as I sat here now watching the video,

I am teary eyed.

Its AMAZING!

The same day he had Bright Start and PT.

They were shocked as I was.

Click to review the blog post:

http://mommyconfessionalinmyshoes.blogspot.com/2013/05/unexpected-surprise.html

Liam had several hospital stays

and setbacks throughout the year.

When he finally started eating we were thrilled.

Unfortunately every time he got sick

he would stop eating

and it would take months to get him to start again.

This past year we ditched the GJ tube,

and replaced it with an AMT mini ballonless button.

Hes gone from 20 hour continuos feeds,

to 12 cont night feeds,

and 3 bolus feeds during the day.

We also added Blended diet feeds during the day.

When we started that,

he started eating more,

drinking,

and gaining weight.

He's still super tiny for his age

but growing great.

He's taller and weighs more

than I did at his age.

So this momma isnt worried

about his tiny size as long as he continues to grow.

Liquids were really hard.

For awhile he would only drink

out of a honey bear.

Then it was a baby bottle.

He finally settled on a specific sippy cup.

He's been drinking out of the same kind for about 6 months now.

He's eating now,

but small amount at a time.

He loved dorritos,

french fries,

chicken nuggets,

almost all meats,

pizza,

spagetti,

beef jerky and so on.

We're still dealing with texture issues.

Oral and environmental.

He will let you brush his teeth now,

but not with tooth paste.

He gags and vomits if you do.

We're still having issues with his feet

and he's been reffered to a specialist,

who has yet to call.

Probably because were still waiting on isurance approval.

He can walk without his IFO's now,

but his ankles are so bad they practically touch the ground.

(Theyve gotten worse since this pic)

Verbally,

Liam is improving daily as of this last month.

We were getting worried about him.

His words still arent very clear

 but we understand them.

He speaks some sentences

and copies everyone.

And we made progress in spreading CDH Awareness!!

I sent in a letter to our Mayor.

After reading she declared CDH awareness week in March every year!

Unfortunately I couldn't be present to accept the reward.

But Liam's Grandma was.

Its been an amazing year for our amazing little boy.

Hes come so far!

As you can see

it's been a triumphant and joyous year for us.

What will next year bring?