Again I am reminded of how things aren't supposed to be, of how even though Liam is out of the hospital he is not out of the woods. Our days should not revolve around meds, supply deliveries, appointments and so on. We should be spending our days with the worst thing on our minds is the next poopy diaper or chasing a crawling Liam around the house to keep him out of things. There in no worring about Liam getting into anything because he doesnt crawl, he rarely even rolls over and poopy diapers are an after thought. I have an intense med sched to keep up with and feeding that are just as strict. I have supplies that I have to track down because without them my son wouldn't be able to eat. I have to chase down meds because all the pharmacies in our area do not carry his meds. The closest is Valley childrens hispital about an hour away. I have to keep a close eye on Liam's g-tube, on Liam's breathing. I have to worry about keeping my two kids seperated because my daughter is sick. I have to keep a calender close by because Liam has so many appointments that have to be scheduled. Things shouldn't be this hard. I should be able to drive to our nearest pharmacy and pick up meds with no problems. I shouldn't have so many appointments to revovlve our lives around. It shouldn't be this hard. The cold hard truth is that it is this hard. Today was Liam's 6 month check-up. He got his usual 6 month shot and his 3rd RSV shot. The skin around his g-tube is irritated but nothing alittle neosporin cant fix. Liam now weight 12lbs 14.5oz and is 25 inches long. Thats the great news. Dr Coverston is very happy with his growth. Liam is staying steady in gaining about 1 pound per mouth sometimes a little over that. For Liam this is great. That tummy that Liam had, the little chubbiness that allowed his 0-3m pants fit in the waist, its gone. With Liam gaining about 1 inch in length, it took away his tummy. He is back to be by skinny little boy with the sagging pants. Makes me wish I took pics of his bare tummy because it was so cute. It's good that he finnaly had a good growth spurt though. The bad news about today was the doctor did confirm that yes he is Tachypneac. He check his sats and Liam was satting at 99%. Then I was ordered to take him from the doctors office in Dinuba to Kaweah Delta Imaging center in Visalia for a chest xray. Dr Coverston wants to rule out phnemonia as well as a possible herniation and anything else an xray will show. Dr Coverston has a few CDH kids so he knows what he's doing and I trust him. His motto with Liam seems to be "better safe then sorry" and because of his great advice and medical help with Liam we cought his cold at the begining stahed last september and took him to Valley Childrens where we found out a bout his lungs and got alot of help that Liam so desperately needed. Now I'm sitting here waiting for the phone that'll let me know if the xray yeilded any answers and what our next step will be. Unfortunately the results didn't get to our doctor before he left the office tonight and he wont be in until after 9am tomarrow so I am left to stew. I don't understand how things could be so good yesterday then turn so bad today. I should understand having been in NICU with Liam where one hour he'd be great and the next not so good but I don't. I am so mad. I just stopped worrying that something was going to happen. I just stopped worrying that he would end up back in the hospital. I let myself get comfortable in our daily routine and now a wrench has been thrown in to mess things up. Just 1 steak admist a hoarde of starving lions. I feel like screaming "Why? Why did Liam have to be born with CDH? Why him? Why me? Why my family?" Why do I always have to be the strong one? The one who shows little or no emotion? It's not fair. If only CDH was something I could wrap my hands around, something I could tear apart. Something I could cause more damage to then it causes to our babies, our children. I would push it away and scream "No. Not my son. Not my family" or " You will not win. You have no power over us". It would be so much easier to have something to take my anger out on. Some way to prove that we will win. I'm angry. I have every right to be. Not just for myself but for my son. Every family affected by CDH has the right to be. Every mother should get their change to fight back. I want to know when, when it'll be enough? When will CDH finnaly be a distant memory in medical history? Because of CDH Liam has many other problems. His biotenidase defficency has nothing to do with it. Just another rare condition he was born with. But his lungs, all due to CDH. I just want to share pics of Liams day.
Liam loves his baths. He loves being able to hang out covered in his towel for a few minutes to air out, he enjoys "nakie" time lol
Outfit number one lasted a while 5 minutes. I didn't get a chance to throw a bib on him before he got sick. Liam however thought it was hilarious.
Outfit #2 covered by a large bib lol. He was happy to be at the doctors office.
Liam played with his oball while we waited for Dr Coverston. Liam thought it was neat to hit himself in the armpit with it. He laughed.
I swear I turned around for 2 seconds and he had already rolled over.
And he was mad about it lol He wanted his paci and didn't know where it was.
And he decided to roll over again when I took my eyes off him for 2 seconds. I tried to set up the camera to record it but he refused to roll over while on camera. He knows lol
I get more and more anxious the more I sit here. I know theres nothing I can do and this is just they way thing go. All I can do is pray and ask for prayers. I pray he doesn't have phnemonia. But if he doesn't have phnemonia, then the next question is what does he have? I am angry. I want to fight back, for my frustrations, for my son, for my family and for all the other CDH babies out there who are fighting, fought and those we lost. I was going to wait to annouce this until I had more things arranged and more details listed but I feel that now is the right time. I wasnt to raise awareness. Ive been fighting so hard to do so. Now I am taking a new angle. Im starting a group, foundation whatever you want to call it to raise CDH awareness. All I want to do it make people aware of whats going on. It's called
'Shooting For Liam, CDH Awareness'. We're working on contacting the Tulare country Sherrif as well as the fire department and the Lindsay police to see if they would help us with an event to raise awareness. We were going to just start with archery because thats what imspired this but decided we would certanly involve things at shooting ranges for the adults. As of right now we are working deligently on details and raising awareness. If we do indeed raise money, that money will be split between research, because we want answers and we want a cure, as well as helping families in need. The money for helping families will go to another foundation that is focusing just on that aspect, as long as they will have us that is. The rest goes directly to research. No money will be kept by us. Yes the foundation has Liams name in it, he's the reason we are doing this, but it's not for him. It's a legacy for him, the profits are not. We could use any help with this anone is willing to give. If you would like to be apart of our foundation, just want to help or maybe donate shirts/banners/anything, have any ideas please contact us. We need the help. The site is up and running although there isnt much on it. Please check it out and tell me what you think.
http://shootingforliam.blogspot.com
This is how I plan to fight back. I may not have something tangable to rip apart but I can do this. Our targets will be pictures of what CDH looks like. It'll be a great way to work out anger and aggression. Im trying to get a bunch of those plastic bows and arrows with suction cups for the kids so they can be involved. Safety will be extremely important at an event. Which is why its very smart for us to try and work with law enforcement. In ending please pray for Liam and add a prayer that we get the involvement of the sherrifs department and fire department that we are hoping for. Thank you all and God bless you.
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