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 sucking....now 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.

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.

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.

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!!

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

ok, so that answers that ? of the day...

Dr M did come in today and he taped Camden's PMV off which didnt phase him. (PMV is his one way speaking valve, so taped off he was breathing all on his own) After scoping him last month and with Camden doing so well he said the trach is ready to GO. Yep, the scheduler is trying to find a date to go to the OR and PICU so Dr M can scope him, check an ear tube that was covered with wax, ;p and then remove the trach. REMOVE THE TRACH. YAH! I knew he was ready, but it still doesn't seem real to me! So many emotions. We will stay one night in the PICU then when all goes well, head home without having to worry about a suction machine and emergency bag anymore. We do not have a date yet. With being so backed up it probably wont be until June, but we are heading in that direction so I am grateful. i will know the date at the end of next week. I told Jesus I am not asking for anything today.....just thanking & thanking & thanking.

So, I put him on a soy formula and he was a different baby this morning....YAH! I talked with his nutritionist earlier and she gave me a soy formula to check out on line this weekend. If I like it we can go with that and then find a new milk free recipe for the blenderized diet. For now he is back on formula, just soy free. =) I can't wait for him to feel better and it was so nice to see him not pukey this morning. I could kick myself for not realizing it was milk and this bad!

Back to the ear tubes and like I already said....they did see one and the other was buried behind goo so he'll look when Camden goes under before trach is removed. Not sure why he still pokes his ears, but someone told me today it could be that he hears more clearly...dunno? At least he isnt crying about it so maybe it is more of a weird feeling.

Milk allergy

Yep. =( I had a blood panel done last week for allergies because of the symptoms he had over pediasure and a few times during breast milk days. He is allergic to milk. I will say I knew he had an allergy, but had no idea it was that. Sooo...all day I have been thinking about it, and there are so many symptoms that milk may be causing that I could be blaming other things for. He is lethargic and puky every morning. Of course he has severe reflux, but has milk made it more severe? He is on a continuous milk based formula through the night, so it could be! As upset i was to hear that he even has an allergy, I cant wait to get it OUT of his system to see a change in him. Tonight he is on a soy formula and I will alter the blenderized diet until I talk with the nutritionist again.

Also, I called the nursing company and stopped nursing all together. I am not finishing the month and Camden IS in with us. A little cough has also settled in his chest, but it hasnt been too bad so daddy and I have taken shifts to sleep on the side of the bed closest to him to suction when needed. ( he normally doesnt need too much suctioning at night, sometimes never) Poor thing. He is fine during the day, just coughing every now and then, and then at night he needs a bit more O2 and coughs much more, but other than that it hasn't worn him out too bad. Now I know why he was so clingy and whiny last week.

Tomorrow we go see the ENT for ear plug follow up. He has been poking at his ears, so Im wondering if they fell out, Not trying to be debby downer, but his ears are still bothering him. I am a bit sad that we wont be seeing his DR and just the nurse practitioner because I was really wanting to see if we could start weaning him off this trach. All in time & just trying to be patient. He is just soo close, and doing so well which I am so grateful for. This time last year we were preparing to leave the NICU after a 3.5 mth stay. He has come so far this past year...