2 year old updates =)

It's been a long two years and you have been such a fighter.......









Camden turned two last Saturday!! He had a huge celebration, and Barney himself showed up. =) At first Camden was a little freaked, but it didn't take long before he was dancing with Barney and was very sad when he had to go! The party was perfect and I was overjoyed with all who came to celebrate my babies life.

Camden has TAKEN OFF in the past few weeks. He had his other testing done (esophagram) and everything looked fine, so there is NO restricted esophagus like his momma, (thank God) and he hasn't had any choking in the past 5 days. He is begging for food, mainly rice, and today he has consumed over 5 animal crackers. Honestly I feel like I am in a dream and have waited for these days for a long time. I have decided not to tube feed him a lot through the day so he can feel hunger and he seems to somewhat be associating it with food. He will sit in his highchair and try and eat rice for an hour. I am sitting with him and encouraging him and praising him. He loves the praise and wants us to clap. His siblings have been WONDERFUL. They are the best speech therapists!

**sorry so many details, but this is his "baby book" ;o)

Physically he is doing great. I haven't been connected with any therapists since we moved due to everything going on, but plan on getting him evaluated. He seems to be right on target physically. I have watched other kids his age and notice a few differences but nothing that he won't be doing soon. ex: sliding out of a chair or climbing stairs. He can do it, just not as fast.

Speech is starting to get better but yes, way behind, which is to be expected.
He says:
Momma
Dadda
Nana
Bubbas ( brother )
bubbles
Mo (no)
Pees (please)
baby
mmmm (yum ;op)
Bye

can sometimes do a P sound and did a short A sound last night. In time....

He is signing:
please
thank you
mine
momma
dadda
nana
Barney
no
blanket
tree
dog
cat
outside
boy
good
yes
bird
wind
sun
rain
car
apple
food
drink
cracker
cookie
rice
I love you
night
day
sleep
baby
light
sky
bubbles
on
off
Bye


He knows where his nose, eyes, hair, head, mouth, tongue, teeth, feet, and bellybutton are.

He WILLINGLY let me brush his teeth for the first time this week. =0)

Weighing around 24 pounds and getting back to be on the skinny side, but we are focusing more on learning to eat, not gaining weight. He is still on a continuous feed of formula for 8 hours through the night.

We continue to get an RSV shot each month through the winter. He has had one cold this winter and did fine. He still is on an apnea monitor and has a pulse ox for stand by. Mommy is going to have a difficult time handing them back to the medical supply company. No O2 needed since trach was taken out. Still off albuterol but I did give one treatment when he was sick few mths ago.

Like I said....he is taking off!! I am so thankful to God to be able to watch him ENJOY life like he does.

Upper GI and Gastro

We headed to G-ville today to have upper GI and then see the gastro. Camden still hates upper GIs just as much as he did before. He let us know this, poor guy. Nissin looks good, no reflux.
So then we headed to GI to address his oral aversion etc. Well, that is why we had the appointment in the first place, but let me back up....

Camden has decided to really take an interest in eating and drinking. He will eat rice now and drink out of an Elmo juice box. OK, I am so overjoyed and beyond excited AND so happy to be seeing this.....but, he is having some swallowing difficulties. Ex: He ate a tiny piece of ham one day then the next day he ate a few tablespoons of rice. Then he gagged and hocked up all the rice AND the ham from day before. This has happened a few times so in my opinion things arent making their little way down the esophagus. So Dr doesnt want to pursue eating ( wants us to be gentle) until we take Camden in for ANOTHER upper GI next week. This time with an NG tube to see the throat since he wont do the barium orally. Today we just did it through his gtube. We couldnt do it today because he had already started to eat his new addiction. (rice)

Let me add: Dr thinks this is NOT CDH related because I have a restricted esophagus, esopagitis, hiatal hernia etc blah blah blah so he believes this could be hereditary. UGH! Let me add to the problems =( But we wont know anything for sure until next week.

On a good note.....we are having a bday party for Camden this Saturday. Mommy has invited everybody and it is gonna be a good old time of celebrating Camden! I was too nervous to have a big party last year, so Im braving the germs this year. =) It is gonna be great!

January

Christmas was wonderful and we got through part of the winter without being sick...until New Years. Funny thing everyone seems to be doing better than mommy. Thankfully, it is just a bad cold.

Camden battled it for about a week and did pretty well. Ran fever for a day or so, battled the snot, and coughing here and there, but he seems to be ok!

As for the retching, this feeding plan has continued to be perfect. No retching. NONE.

He has received 2 RSV shots so far, and is due for one soon I'm sure. My insurance has surprisingly been great so far this year! One less little stress to deal with. Those are nice little surprises.

He has been working on the "N" and "D"sounds and just about has them down. So now he can do, "B", "M", "D", and "N"

So words are still few but we have momma, more, bubba, uh oh, mo, (no), nana, and finally dadda! Still has a hard time with nana and dadda, but you can definitely tell what he is saying!

I finally made a video for Camden. If you get a few minutes you can check it out. I can't believe he will be two this month.

A New Kid....

We went to see Dr Kays and let's just say he is amazing. It is so unbelievably wonderful to discuss Camden with a Dr who knows CDH and has dealt with 250 other CDH kids....

So there WAS something wrong....thankfully not a huge deal. =) He was being fed too much food at each feed. I have always worked with a nutritionist since we've been home but how were they to know? They definitely tried their best to help me with feeds. I never would have thought it was all due to the amount in each feed. He was already getting less than most kids his age. I have slowed his rate down to 2 hrs before and it still didn't help! Not only that, but back when he was getting less, he was still retching due to the milk allergy! So, Dr K cut his 5 feeds a day back to 4 a day shaving off around 50 mls each feed, then going back to an over night feed to make up for loss calories at 400 mls at a rate of 50, so over 8 hrs. Ew to all night feeds again. Yea to CAMDEN HAS NOT RETCHED ONCE since last Tuesday!! We are doing my blended diet for the day feeds, and back on soy formula at night. I was scared since he retched so bad with it but it could've been just from being over fed. So far he has done well with the formula. I am seeing a few hives here and there. Hardly any though, so I am hoping he continues to tolerate the soy formula and we go on retch free. (Potty training is looking further and further away with 400 mls given through the night....holy moly huge pee diapers in the morning. = S )

So, just in this week since he has felt better he has been babbling up a storm, tried around 25 grains of rice and 3 sketti noodles. =0) When he is sick he keeps that mouth so guarded, wants nothing around it, and hardly speaks. So hopefully we will see new things to come with Camden.

Gonna do an upper GI soon and xrays every 3 mths for this year. Dr K explained things to me so clearly and helped me feel more comfortable with some of the fears we had. Poor thing probably wasn't expecting to do counseling sessions.

It is so nice to see him up and running, testing me, telling me, "mo!", throwing fits, laughing out loud, trying to sing..... It has been a while and I have never seen him retch free for a whole week. Exciting!

Gainesville is a little closer and we are looking forward to Camden's new care. Very strange not going to Jax as much. We will always be so very grateful to Wolfsons Children Hospital and all the Drs that saved our baby's life! God opens the doors needed....

Good stuff =0)

Got an appointment with Dr Kays on Tuesday! That is the good stuff... =0)

Camden is doing better this week......except for feeding time. He is eating over an hour and a half each feed and retching bad and just wants to lay. He may sometimes get a break from the retching once/twice a day out of the five feeds, but he still is cranky and wants to be still during that time.
Had a little more energy the last few days and it was nice to see him up, smiling, and trying to talk. He doesnt get too much free time with feeds taking so long. Im trying to get the calories in, but every night I have been turning off the pump when he isnt quite finished. I cant stand watching him lay there and retch while he tries to go to sleep.

It continues...

I am going to try to be fast. I feel like all my last posts have been about Camden's retching. I have lost track of time with it. I am always wondering if it is an allergy (since milk made him that sick!) and I do a rotation diet over ...and over again for months. It has been going on for a really long time but then a few days before Thanksgiving it got really bad. He couldnt sit up from being so worn out. He sometimes retched 3 times an hour. He retched through the night with an empty stomach. I just didn't have the heart to put him on his continuous feed at night. He was down to 3 feeds a day at THREE hrs per feed...STILL retching. This really bad phase last about 4 days and I even took him in the ER scared for him. I am not going to get into on here because I dont think it is the right place to do so but after driving 2 hrs and waiting their words were, "we have nothing to offer you" and " he looks fine on daddy's lap and he isnt in any resp distress"I cried and cried. They finally gave me an xray which turned out ok.

I took him home and I cant remember the last time I was so hurt and upset. (Like I said there were other things said to me.) He had another rough day then the next night he had the hugest bowel movement and was so much better...? Yesterday, he was great and back to himself then last night he retched worse than Ive ever seen. There is something wrong. If I hear someone tell me it is a flu again, Im going to scream. Or that Ive skipped speech therapy for two mths, or that I havent tried a new med my surgeon offered me to try....(I want to find out why he needs the med first. ) And no, not one of my family members have been sick with a bug & and has skipped speech because we moved and I was giving the kids a break with all the retching.

He also sometimes make a popping sound when he retches which scares me too. I think he needs a CT. I have found several cdh babies that had reherniated and were even in the hospital due to being so sick and the xray looks clear so they dont think reherniation. Finally a CT is done and there is a stomach up in the chest cavity. I am not saying he has reherniated, but just to rule it out....?

I know he is in pain. Even yesterday when he was doing very well he didnt want me or my mom. Hasnt really wanted to come to us for days. This is strange...he absolutely loves his Nana. She thinks it is because he is mad we havent made him better. :( I dont know. He is very irritable and you can tell he tries so hard to play but something is bothering him.

So here we are today and as I have typed this he has retched with half his feed going in him at a slow rate, and he wants to lay down. He just got up after sleeping 12 hours. Something is wrong. I keep thinking I am going crazy. Im so glad we live near my parents so they can see it. I am so glad my BF was here during Thanksgiving week and witnessed it. If everthing was ruled out and I knew this was going to be his life, and there was no fixing it, I would deal. But I dont think that is the case.

So, I had Camden's ped give him a referral to go see Dr Kays in Gainsville. Waiting on them to call me with an appointment. I am hoping we can look into different things and I am looking forward to meeting him. He deals with crazy CDH moms all the time, so Im sure he has seen and heard it all. ;o)

I have to go day by day and count my blessings. (Dont get me wrong, when I was on the side of the road for two hrs with a flat on the way to the ER ....watching my baby have 3 horrible retching episodes I had a pity party.) I have to continue to keep looking at things with the new perspective Camden has taught me. I have to ask for forgiveness for being ungrateful and thank God my baby is here. Everything's going to be ok.

Camden in November

Hi All. =0)

I havent been able to log in due to some computer problems, but there isnt much going on. Camden is growing and starting to babble more and more. Words are soon to come. Still a lot of closed mouth humming.

We did go see his surgeon, Dr W, and she IS leaving. I am so saddend, but wish her the best. It was so hard to hear her actually say it. WE LOVE HER! We are now thinking about going to Gainesville to see Dr kays, and it is actually closer to us now that we have moved. If you are a CDH mom, you know who he is, but for the others he is a DR that specializes in CDH kids. With DR W leaving we are thinking we need to get established with someone else and she is going to be hard to replace. We think he will be the next best thing! ;o)

Camden is gaining ok, but the retching has increased to where it is a struggle to feed him. He is back on the pump and it seems like he lives with the Infinity back pack on. I have done rotation and food allergies arent seeming to be the problem. (besides the milk and soy of course) I am going to continue rotating his food so we dont acquire another allergy, but the retching situation is something else. And no one knows....not even me. I know it is just how he is working...due to surgeries? But what exactly? So I am going to try to stop dwelling on it and trying to figure it all out. I have to put it in God's hands, but it is so hard to watch your baby dry heave through out the day. He still does not want to eat, but did put a grain or two of rice in his mouth. Just depends on his mood, but two grains of rice just isnt gonna cut it! ;o)

AMAZINGLY our private insurance decide to cover Camden's RSV shot for this winter! We were in shock as this shot is outrageously expensive and usually they give you a fit when your Dr orders one. We are heading to Jacksonville Tuesday to get it and maybe a few others while there. We also will meet with his RT from his medical supply company. They kept us with them knowing that Id be in and out of Jax which was nice.

Just trying to stay healthy through the flu season. Our new church is super tiny, so that is good for us these days. =0)

I continue to thank Jesus for Camden's life...daily. He is so precious and has the funniest personality on him! Pictures and hopefully a video to come. Take care all....and thanks for checking in on us.