Thursday, May 27, 2010

Camden is officially a LICKER

I haven't wanted to blog about Camden's eating because every time I do, he stops making progress. ;o) But this time I believe it is official. He is now a licker and is actually opening his mouth and then closing it on the cracker or cookie with a lick. He has even taken a small bite out of a pretzel. He gagged and made a lemon face, but that is a weird feeling for him so it is to be expected. He used to only lick for 'praise' but this week I have caught him a few times licking when he doesn't know he is being watched. = p He still goes through his different moods with it, of course. When daddy got home last night I asked Camden to show daddy how he eats and he threw the cookie across the room and wanted no part of it. Still, he has made HUGE improvements in the last few weeks and we are extremely proud parents of a "licker."

We checked out a Baby Signing Time video from the library yesterday and we are hooked. There is something about Rachel's smile and I am finding myself watching way too much of it with Camden. He likes them too, so I guess we need to start investing in them. He is picking up fast and doing great with his signing. Barney still remains to be his favorite.

We are missing his Thudguard helmet. I feel so lost without it, and I have no idea where we put it. It is in this house somewhere.

Above is a picture of all my children...Camden's siblings do exist! Not sure what Camden was doing, but the others looked kinda cute. = o)
Also, one of his new ugly scrunch faces that he gives people. It is pretty bad, but really funny.
He also decide to really suck his thumb on the day we went to the park and had a picture day. He never sucks his thumb like this, but makes me look like a big liar with these pics. He is actually sucking his thumb more often since that day. I feels weird saying that and being all happy about it. I was always against thumb I am so happy my kid with oral aversion wants his thumb in his mouth.

You can see his trach is missing his purple PMV in most pics. He yanks it and throws it or licks it. Not hearing him as much these days. After next Wednesday he will have no choice but to have a voice 24/7.

Sunday, May 23, 2010

Putting things in perspective.....

Last May>>>

This May......
Tonight, I am not able to look at this picture without crying. This picture says it all. He looks so free here. I put him in this swing yesterday and his excitement brought tears to my eyes. He would get the hard giggles as I pulled him back and counted to "three" and then waited on me to let go and yell, "weeeee" He would sign "more" when I stopped... over, and over, and over again. I never knew just how far he would come in a year, no one did, but yesterday he was swinging, breathing on his own, hearing my voice, holding on to the swing so tightly with his little hands, and laughing out loud.

Thankful to Him for guiding us from that May to this May.

* why do the baby swings have to look so gross at every park?? Those that know me KNOW just how difficult it was to put Camden in that thing. I sani wiped it over and over again as it remained black, realized it needed a magic eraser, and just had to 'let it go'. I had to remind myself that whatever black stain was on the swing was now (hopefully) germ free. Camden could have cared less. He will eventually have to learn to live with me and learn germ rules.

Friday, May 14, 2010

Ordering Medical supplies

I placed my monthly order today and it only consisted of syringes, gtube extensions, o2 tubing, feeding bags, and his pediatric formula. No trachs, trach ties, J bunn tubing, masks, trach guards, pmvs, soft sponges, t-vents etc. I feel like another huge weight has been lifted off of us. One more tube will be removed out of my baby.

Thursday, May 13, 2010

Unexpected PICU stays YUCK!

Camden is ok. But long story short his brothers got careless in the house with Camden in their care ( I wasnt a happy mom) and Camden did a crash bang off the couch onto tile. Fractured his skull on the side of his head. I was so upset. I atually didnt bring him in right away because there wasnt a knot and they had told me hit fell more on his back. Nope. The next day he had a huge fluid filled pocket on his head so to the ER we went. We were there for 5 hrs, then they admitted him to PICU over night. They said it was really tiny fracture, but with his history they wanted to watch him. I think the worst part was when they had a social worker come talk with me. I understand they have to do this, but it KILLED me. I cried the whole way home. I was paranoid that someone might actually think that of me and then I was sad for the kids who are actually in there because their parents really hit them in the head. =( The dr said she cant begin to tell me al lthe abuse cases. How sick and heartbreaking.

So that is what we've dealt with this week. He looks great and seems be back to normal. Other than being clingy he didnt have other symptoms. ( o fcourse he couldnt tell me that he had a headache which Im SURE he did!)

Other than more gtubes balloons popping on us, there is nothing else to report today. =) We continue to do the count down to trach decannulation day!!

Saturday, May 1, 2010

His First Word @ 15 mths old

was Momma. =) The other day on the way home from a two hour trip, Micah repeated it 5,000 time to him. (that is what it felt like to me) Right as we were about to turn into our neighborhood he said it and I was all over the road laughing and crying at the same time. IT SOUNDS SO WEIRD to hear a word come out!!! Even with the PMV on he just usually hums and sometimes says, "ah, ah, ah" so a real word is just too neat. =) He is very sick of all of us asking him to say it, so rarely will he say it on demand unless he is in the mood for praise. He said a word!!!!

I have been letting him sleep with the therma vent on. I guess technically you arent supposed to, but with him doing so well I wanted to see how far he would go without needing oxygen. We spent the night at my parents the other night and he didnt need any. Since we've been home he has needed it around 3am so I have to use the J Bunn. That thing turns our room into a sauna so I try to keep him off it as long as possible. I am going to have to get some nasal cannula and try to get him used to them on his nose. When that trach goes, I know he is going to still need o2 at times. yikes, that should be fun getting those things up his nose! ;s He has been doing great in our room. Im up much more but I kind of think of it like I am up with a newborn baby. Every night is different with the monitors and him coughing etc. He has actually went the last three nights without suctioning so he is slowly getting over that cough he had.

Trach decannulation date: JUNE 2nd