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.

The endless feeding drama

After upper GIs, xrays, ( we went again the other day and all is fine) I have come to realize that Camden just can't tolerate his feeds. Yes, he has allergies too, and there may be some I havent recognized yet, but after a rotation diet he is still wretching. We are back on the pump and still using 60 ml syringes ( taking 20 min breaks in between each)but I am now feeding him over 45 minutes on an average. It is helping, a lot. He did have one bad episode today, but we found it was because he was laying on the bed flat and being tickled. BROTHERS! =0) Anyway, it is helping so that is what we have to do. I am not understanding how we worked for so long to get his feeds through faster, and not we are back to this?? I just knew as he got older things would get better. It worries me about his future with eating, especially when he is still not taking any calories by mouth. Trying not to get discouraged and just focusing on how well he is doing over all!

A cough has settled in his chest from the cold he got a week and a half ago, but the wheezing is leaving and he is doing ok. =0)

He is also finally gaining weight. I have been using different things, and substituting sunflower butter, honey, and garbanzo flour in his rotation diet and it is slowly bulking him up more.

Above is a pic from today...sorry about the quality. Mom's camera was on the wrong setting. ;p

Happy bday to my 14 yr old, Justin and my 6 yr old daughter, Micah!

*sniffles*

No one else, but Camden. He seems to be kicking it ok. Sleeping a bit more, and tonight he had a neb due to a little wheezing. That is the first one since last winter! Hopefully he will just get better fast, and it wont turn into anything. =0)

Tonight he said his third official word, "More" It is too precious and the lip formation he does with it has us laughing so hard. It is so neat to hear!!

ENT visit was fine. Ear tubes still in place and trach hole being left open for now.

We traveled to Jax yesterday to see his ped. I shared the food allergy issues, and we are going to rotate his diet to see ho that works for him and also to not create more allergies like I did with the soy. I am alternating hemp, rice, almond, and coconut milks ( with a lot of other things added to it). I havent tried coconut or almond yet. He did gain weight with the extra olive oil I have been putting in his food and made it to 23 pounds.

We found out that his precious surgeon, Dr. W is leaving. I was so upset to hear this. She is one of a kind and we will feel a great loss when she is gone. I cant begin to express the gratitude I have for everything she has done for Camden. God used her in a mighty way for our family, and we are so thankful. I go to see her on the 26th of this month and am hoping she has changed her mind. ;o) Well, you never know! =0)

Physically Camden is catching up. We are in a two story house now, and if we allow him, he will climb right up the stairs. I still have to look into getting speech over here now that I have moved, but have slacked in that area. He still doesnt take in any calories by mouth, but continues to lick things when in the mood. Still signing for communication too...

Camden has adjusted well to his new place. He still sleeps in our room and still uses the apnea monitor at night. He loves seeing his Nana and Papa on a regular basis too! We are really liking our new little town.