Tuesday, December 14, 2010

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....

Wednesday, December 1, 2010

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.

Monday, November 29, 2010

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.

Saturday, November 13, 2010

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.


Friday, October 22, 2010

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!


Thursday, October 14, 2010

*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.

Thursday, September 23, 2010

Quick Update

Still busy packing, and now we have decided to move out this Saturday so Im not finding myself on the computer much. =0)

As for Camden we are still doing the hemp base diet. Wretching a little bit, but definately cut back a lot! I am thinking it is just a lot thicker and heavier on his stomach. He has gained a little bit too. Up to a whopping 22 pounds, same has his younger 10 mth old cousin! ;p He is not tolerating more than 8 ounces at a time. If I try to do just a little more, he gags.

We saw pulmonology today. Camden looks great and we dont have to go back for another 3-6 mths. She said just to call and try to get all my appointments together since Im driving almost 2 hrs now. She gave me another order to continue the apnea monitor and emergency oxygen to have on hand. I am so thankful for this. I can't imagine him sleeping through the night. I know those fears will slowly go away, but especially with his diaphragm already re herniating, I have my concerns for sure.

No more words, but is officially saying the "ba" sound. Still continues to sign as communication, and that is just fine with us as we wait for those words to come.

Still no eating, but licking more and wanting to taste everything, which is super hard now with the allergies to soy and milk.

We go see ENT tomorrow and I will try to post an update. If not, we will "see" our fellow bloggers in a week or two when we are settled. =0)

Saturday, September 11, 2010

Busy with moving...and a little update on my boy...

We have decided to move to Madison County, Fl. 2 hours away. Will will still drive here to Jacksonville for Camden's doctors, of course. Things have just happened so fast and easily and we will be moving Oct 1! Glad to be in the country and near my parents! Lots to do with medical supplies and such, but nothing compared to vent days, so no complaints.

PT came again and agrees that he is taking off. We are not going to bother to get another PT when we move, but just do an evaluation in 3 mths. No OT either, but of course we will need to find speech out there.

We believe SOY IS the issue. Has done soooo much better with rice, but has lacked all the extra calories/protein that was in the bright beg. formula so we are starting a new blended diet with flax, molasses, olive oil, wheat germ, and a few more yum yums. Good thing he cant taste it, huh? ;o) The base will be hemp milk...

He was in the 3rd % in weight and 31st in height at the nutritionists yesterday. Skinny thing! Hoping this new diet will fatten him up!

Will be busy and packing for the next few weeks, so until then...

MOST IMPORTANTLY...
My heart is heavy for the Agnew family, a fellow blogger that I have never met, but have been reading about their precious baby girl, Maggie. I started following her blog back when Camden was trached. She is extremely sick and they found out she has a mitochondrial disease a while back. Please keep her in your prayers....

Also all the families hurting from lost loved ones from 9-11....

Tuesday, August 24, 2010

Few Camden update =)



First of all, the good news with physical therapy. Camden's PT said that although he is behind physically she feels like she is going to cut back her visit once a month! He is progressing so fast. If after a few months he doesnt seem to be making progress she will start coming more but he seems to be taking off. His walk is a bit Frankensteinish, but that is from laying so long. His muscles in his legs have to stretch in areas, shorten in others, but the PT said that is totally normal (although I do love his walk =p) He is hardly crawling at all anymore, I am still beyond excited over his walking. Praise God my baby is walking...

I am still trying to figure out the cause of the retching. He has been off the soy formula for about a week now and the retching has left....until this morning. ugh! I decided to take out soy to see if he had developed an allergy to it since he has those tendencies, being allergic to milk. So after a week of doing great, this morning he retched. I am still thinking soy is a problem, although being allergic to soy and milk is going to stink. I am going to have more blood work done to rule it out. I think the retching this morning was just normal Camden retching. I dont know! If the results come back ok, we'll pretty much know it is "just him" =(

He is signing a lot and still not saying anymore words. We now have speech therapy coming to the house once a week, and still continue to have the OT every Tues. She has been working with him on food, so he has despised her the last few visits. He did great today, licking chips until a piece broke off in his mouth and he starting gagging. He recovered well, then eventually threw the chip very rudely right after she left. Today he decided to lick my gum and loved it. ( I know, gross, but when your kid doesnt eat you dont care) So I need spearmint flavors, salty, chip textured foods that don't crumble. Anyone know where I can get these, let me know.... =)

This past weekend we raised a little awareness for CDH. We were trying to win the APX contest that was offering 100,000 for first place with the foundations that received the most votes off of facebook. We went out in front of a mall and gave people ribbons, and made them promise to go home and vote for us. =) Not sure who really did it, but at least they got to learn what CDH was. I am pleased to say CHERUBS won 2nd place, the 30,000 reward!

Saturday, August 14, 2010

Officially WALKING!!

I waited 24 hrs to make sure...but it is official. He has decided to walk. He does it a lot, like a little turtle. So precious! I still cant get over it, and kept making him do it today. =0)
Gagging and retching is still bad. Actually seems to be having more bad days than good. With all the research I have been doing online, I am realizing that is seems to be caused from the nissen wrap he had. Basically there is nothing that can be done, and with time hopefully things will change. I am finding more and more similar stories about other kids with nissens having the same symptoms. And it doesnt have to happening right after surgery, it can happen a long time later.
In the meantime we did meet the new GI doc. He is ruling out parasites (dont u love getting poo samples?) and I have Camden back on a probiotic, but I know that isnt the problem. I could be wrong....but I just think this is (unfortunately) how Camden's body is working right now.

BUT.....he is walking!!!!!!

Monday, August 2, 2010

Another test...

Going in for another upper GI this Thurs, this time a bowl follow through, somthin or another to see more.
Then we will start to see a GI Dr, which I knew was coming, I was just was trying to go for "less" appointments, but it only lasted so long. ;o)
His upper GI from last week shows no problems, nissen intact. Thank God for that, but still not sure what causes all the retching.
Until then...

Friday, July 30, 2010

walker and GI issues...

Camden still hasnt walked since July 10ish. I just knew he'd take off, but he hasn't by anymeans. His PT brought him in a walker the other day to see if that will encourage him. He is getting good at it, but doesn't do it continuously, just when he feels like it or wants attention. =o) He did better than we thought though. All his therapists think he is extremely stubborn....

For about a month now he has went back to retching and gagging. A LOT. Mostly during feeds, but also strangely when he is trying to poop! :s When he does this it usually means reherniation of the diaphragm, or like last time it was when we found out he was extremely allergic to milk. Or his nissen unraveling? dunno.... SO, Monday I took him in for an Xray. Diaphragm looks ok. Great! =o) So, we went for an upper GI the other day and havent had a call back on those results yet. If that looks ok too, I dont know what to think. We switched to soy a few mths ago, so he could have developed an allergy to that, but that would really STINK. If upper GI looks ok, I'll take all soy out and try that. I can't stand to watch him retch and dry heave everyday. The little trooper just gets through it then goes back to his play. In the mean time we have slowed his feeds, and have been venting him a lot more. Lots of steps back in the eating area, and with all the icky feeling, he hardly wanting to lick now. =o(
Ready to get to the bottom of it and make him feel better. I hate not knowing....and if things look "ok", and it isnt soy ( which I highly doubt anyway) and this is just what his body is doing right now, I dont know what to do. It is hard to even keep an 18 mth old hooked to a feeding pump for any amount of time, so I cant imagine longer. I am just babbling thoughts tonight as I post... ;)
Other than that.....he is doing great! =o)

Sunday, July 18, 2010

Glad I got the walking on video...


...because that is the one and only time he did it! He has had PT and wouldn't hardly stand. Im glad I had the video to show OT and PT or they wouldve never believed me. ;o) He will not do it for us either. I even tried to take him back to Nichole's carpet...nope. He is a stink pot. He refuses, falls to the ground, laughs and take off doing his chimp crawl.
His PT did introduce him to a tricycle this week. He was checking that thing out and very concerned that it would fall over. He did really well. Hilarious when she wrapped his feet to the pedals. But he was ok with it after a few minutes. As you can see above, we are still using the protective and it has prevented more head injuries! We love that thing...

Still not saying anything but making more sounds, and almost says "uh oh" sounds more like "uh uh"
We started introducing dusting foods, like ground up pretzels. He aint having that either. He still is licking, but not wanting it IN his mouth and this month it has been a bit worse. He likes to lick pretzels but hates it "dusty". He had a wet cough that started around the 4th, and it is lingering. We were quite happy there was no O2 needed, praise the Lord, but when he coughs it makes the reflux want to come up more, which causes him to retch. Having the nissin surgery which doesnt allow puke to come up makes it worse. ( yet he had to have it to keep food down) Another vicious cycle, and a little set back in the eating department. So that is why I believe he is refusing orally even more. But we are ok with it. We are not in any hurry. Thank God for gtubes. ;o)

We are trying to get on a cloth diaper kick. We have a few so far and they are so cute. I have to learn a few more things about it before we are all cloth. Daddy doesnt seem very fond of it....but I am thinking he'll adapt. =0p

Sunday, July 11, 2010

really big "steps" tonight....

video


....Decided he was going to learn to walk before standing! We were at the Saphore's house tonight and he always loves the soft carpet and feels more confident on it. We worked with him for a few minutes, then he got the confidence and went for it! I am so proud!!

Monday, July 5, 2010

ENT visit and the fourth

standing for a few seconds =)

Oldest brother, and daddy...

Camden with his Nana and Nanny (great grandma)


Last year Camden was on a vent and had only been home from the NICU for 2 mths. He obviously did not go out for the 4th of July. This year he did. He danced with his flag and watched fireworks with out freaking out. He is so funny and he loved his "first" Independence Day celebration. Thank you, Lord for our freedom!
He even had a little touch of a tummy bug, but that didn't seem to get him down too much. He missed a few feeds and I am sure lost a little weight, so we will be starting the new diet tomorrow. I didn't want to add the extra oil when his tummy wasnt all right.


We saw the ENT, Dr M the other day and he says Camden is looking great and we do not have to see him for another 3 months. That is SOOO WEIRD. Camden doesn't have to go to the ENT for another THREE months!? We go see the pulm tomorrow and we will see when we have to go back for the next follow up. I am thinking it is really calming down with all the appointments and it would be nice if we just had to go to the hospital once every month or so...we shall see.

Tuesday, June 29, 2010

Busy June

Camden in his frog bathing suit..


Camden has been doing lots of swimming this June and thinks he can actually swim. He is now trying to jump out of my arms. Swimming in dad or mom's arms isn't good enough. If he'd never had lung/airway issues, I'd so let him go so he would know that he couldn't swim, but ofcourse that isn't happening. So now when we go in the pool he fights me the whole time to get out of my arms. No fear!

Still no oxygen needed. I am believing we are done with that!

No food by mouth, but still licking EVERYTHING. He loves licking pretzel rods and prefers salty, but will lick a cookie too. He is taking sips of our drinks here and there, but as soon as you hand him a sippy cup or spoon he pitches a fit. During dinner he is in his high chair, we sprinkle some food on his tray, give him a real big fork, (wants the real deal) and then he forks the food. No eating it, just forking. =) Still, this is all huge improvements for Camden.

It has been 3 weeks since we increased his feeds, and I believe he has started to slowly gain again. I havent weighed him in 2 weeks, but I am thinking he is now a little over 22 pounds. He is still on the same baby food blenderized diet.

Still no words besides" momma", but is making different noises. His OT told me that she has noticed more sounds since last week. He is yelling at us too. He is also scribbling on my walls. I never thought he'd be doing that this soon and I am so proud. =0)

He is signing more too. Learns it once and it sticks. He wants to know the signs for everything. He looks so adorable when he signs "day." And every animal is still "dog" except cats.

Not walking, but close. We have a new PT (love her) and she is going to give him another week or two to see about a walker. She says he'll probably just need it a few weeks to boost his confidence, and then she thinks he'll take off. As fearless he is, he isnt in the walking department, but it wont be long.

We found a new organization in the Philippines that helps trach babies lacking supplies to donate all our extras to. I am so thrilled it will be needed and used. the other extras that weren't in the packaging and couldnt be shared are also being put to good use. This is my Peanut's dog pictured above, Fred, who apparently had to have an emergency trach put in last night. At least his breathing is being monitored by the lego apnea monitor.

Today, I am thanking God for Camden's growth and for his health. I was able to talk with another mom today whose baby was trached yesterday. =( Thinking back and explaining things to her brought me back to those days and I am amazed at how far Camden has come. I thought about how far he will be this time next year, and he gave that mom hope for how much her baby will progress in a year. She really helped her seeing him up and moving and trach free!

Tuesday, June 15, 2010

The beach, sipping, and other updates...

Camden has been doing a lot this June...
He will be 18 months on the 22nd!

First praise is that since the day his trach was removed, he has NOT needed any oxygen!

He has been to the beach twice since trach removal, and loves it. Has no fear of the water. Also signs "water" when he sees pools and gets excited to take a swim with daddy.

We are still cruising, but working on getting the courage to walk. I am thinking it is just a few weeks away and he will be walking.

No new words, still just says "momma". When you bug him to say anything else he says "momma". He does "hum" "uh oh"..

He is signing approximately 15 -20 words. He also signs "dog" for every animal. The gorilla at the zoo was a dog, and so were the birds at the beach. Oh, and while reading Noah's ark, all those animals were dogs too.

He is still hanging at 21 pounds which has put him in down in the 3rd percentile for weight (30th in height) so we have increased his feeds. He is now getting 4 syringe feeds of 195 mls each ( still blenderized diet of fruits, veggies, and meats) and is tolerating them wonderfully!! The milk free diet was definitely the key!! He is still getting a night feed on the feeding pump, but we have cut back on that. My goal is to cut that out completely and add that to the day feeds as he continues to tolerate more food at once.
As you know he is now licking, and now wants to try everything we eat, depending on his mood. If he is in a bad mood, food makes him even more angry, but most of the time he wants to lick.
He will actually open his mouth and almost bite my finger off for spaghetti sauce.
He will now sip sweet tea out of a cup. Yea!!! Still no official calories by mouth but I am thanking the Lord for licks, sips, and tastes.

Has 6 teeth all the way in and at the moment he has cherry red gums and is cutting like 6 more, poor thing.

Still wearing his "ThudGuard" toddler helmet with the over paranoid mom. I am thinking after he has been walking for a month I may let it go? = o)

Still getting occupational therapy once a week, pulmonolgist around every 6 weeks, nutritionist around every 6 weeks, surgeon every few mths. We have a follow up with ENT July 1st, then not sure when we'll have to go back. We do not have to see the cardiologist for 1 whole year. Our next step in to look into an intense feeding clinic.

This has been an exciting month for the Roells! =)

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 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.

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

Friday, April 23, 2010

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.

Thursday, April 22, 2010

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...

Sunday, April 18, 2010

Camden's new move and new diet...

After much thought and prayer, Marcus and I have decided to move Camden in the room with us. I called the nursing company last Friday and let them know and told them they could finish up with this month, but that I am ready to have my baby in with me. ( Plus a lot of nursing issues, but I'll spare u the details =p) I am beyond excited to have my baby in my room. He is doing well, and hasn't had any serious scares. I know that my sleep wont be as thorough, but it is time. I am beginning to be more stressed about new nurses and sleeping nurses and that hasnt been helping me sleep. I will have the monitors taped to my head. Not really, but they will be on a shelf right next to my bed. Room measurements have been done and there are spaces ready for the crib, O2 tanks, suction, apnea, and pulse ox machines, j bunn, and feeding pole. =p I hope Camden is just as happy and does well with the new move.

Today was Camden's first blenderized diet. I was super excited. This first batch was turkey, applesauce, squash, peas, olive oil, milk, rice cereal, and a bit of corn syrup and boy did it stink! (Good thing it is given by gtube lol) I am not sure how he is tolerating it. He was off and on retching today. I am not sure if I gave it to him too fast? I did his dinner over 30 minutes and he didn't do well. Tomorrow I will slow it back to over an hour and I am thinking he'll do fine, then we will work at slowly getting faster. Day by day..... =) And thankful to the Lord for this day....

Saturday, April 10, 2010

A few updates in the Camden world....

Camden has been staying healthy and we are super thankful for that. Crawling around a lot and slowly cruising along furniture. Funny thing he still doesnt roll....weird. He is like a turtle on its back... We are still doing OT here at the house once a week and his OT is very happy with his progress.

Still has just the six teeth...

Still no words, ( besides the occasional mamamama) just hums and "ahhs" and the peewee herman(ew) laugh that is hysterical. It is so fake and so funny!

Doing great with the o2, only at night but now seems to be needing it only a few times a week, with the j bunn.

Forgot to mention we are trying a new feeding tube...the Mini One. Been a few weeks, and no leaks with it. Much more secure, until today when my 13 yr old ripped it out. GRR! He doesnt go online, so I can vent here. ;) He felt bad, but the balloon didnt burst and I put it back in. I was a bit emotional ( ok, I was crying) because it was hurting Camden and he was bleeding. So over the tube feeding, but it is what it is. He will not put anything in his mouth. Im making him play in food more this week. We did stage 1 sweet potatoes on his highchair with a spoon and he smacked it and touched it. That is a big step. Another interesting thing is that when WE eat, he licks and smacks his lips. It looks as if he is begging for food! Of course you offer him some, and (besides the occasionally surprising lick) he shakes his head no or growls at you to leave him alone.
I am also starting him on a blenderized diet. I am not wanting to give him a toddler formula 24/7. I want him to have real food. Fruits and veggies. So, I got with my nutritionist and we are starting with a simple recipe. I will do this during the day feeds, then start him on pediasmart feed at night to make up for needed calories. Cant wait to try it!
Still have to get him into the allergists to see if we can find out why the breakout with pediasure.

We are down to an hour for one feed now. ( sounds like a long time to some, but that is great for us) I am hoping this new diet doesnt cause a huge set back because I know I need to start it out a bit slower to see how he tolerates it.

he is signing:
yes
please
all done
milk
no ( his made up "no")
dad
mom
and today he did cat for the first time =) he loves the cats out front and want to grab them, but they are way mean! :s
I have been slacking on teaching new signs and need to get on the ball...

weighing 22 pounds now at almost 15 mths.

Wednesday, March 31, 2010

CDH Awareness Day


March 31st is CDH Awareness Day. Camden is sportin' his new shirt we ordered for him and he has the major giggles today. =)
This video below is from the CDH Cherubs website for all cdh survivors and babies that have already went to be with Jesus. On this video, there are 700 pictures of babies, children, even some adults that have had their lives changed due to a diaphragmatic hernia. Camden's pic is even towards the end. =) The founder of the cherubs website is a precious lady, Mrs Dawn Torrence Williamson who lost her angel to CDH. She has dedicated much of her life to continue to help others that struggle with the affects of CDH or the loss of a CDH child. The beginning of the video shares some facts about CDH... video

Tuesday, March 30, 2010

Louder and faster! =)






Camden is getting around everywhere. His crawl is quite funny, but it works and it is getting faster and faster. He loves to pull up on the couch and cruise.

Last night I had to go out for a bit and my son called me to tell me Camden said "momma". I have been trying to get him to say it FOREVER. Of course when I got home he was in silent mode again. He is off and on making sounds, depending on his mood, although he is wearing the PMV (talking valve) all day unless he is sleeping. He is opening his mouth more which is huge and started fake "ha ha" laughing the other night. I LOVE to hear him.....love it. Never gets old. I can't wait for him to wake up so I can put his PMV on. =) And actually hearing his laugh is amazing. So, obviously with him tolerating the PMV ( remember he can breathe in through it, but he has to exhale out of his mouth) he is doing well in the breathing department. Hasnt neede o2 during the day but he does at night because of the Jon Bunn ( mask the moisturizes his trach) has always caused him to require a little oxygen.

This week he has taken 3 licks of milkshake and 5 licks of gravy so far. They were teeny tiny samples but he licked it and went back for more....then got mad and shaked his head NO. =) It is like he is so curious, gets the courage to taste, then sometimes gets nervous, or the taste gets overwhelming and he makes a sour face. Cant even imagine what he'd do over a lemon.....

Some of the pictures above are from his first zoo trip. He loved it!!

Saturday, March 27, 2010

Thanking Jesus...

“My salvation and my honor depend on God ; he is my mighty rock, my refuge." Psalm 62:7

I was looking back at this time last year and Camden was recovering from his trach surgery. It is almost hard to believe he has been trached for a year and almost home for a year. I remember praying for time to go by quickly. It has. It is 1am and I am hanging out in Camden's room waiting on daddy's 3am shift. =)

I heard of another CDH baby passing away today and my heart aches for them. I was following the blog while the mom was pregnant and was sad to hear that the baby didn't make it. Please say a prayer for A.J.'s family tonight.....

Monday, March 22, 2010

Good day

Surgery went well, Camden did great. They didn't wheel him away in a crib this time, so the hardest part was giving him to a nurse to take back to the OR. He was losing it, looking at me like, "Come back!" =( He freaks with nurses and Drs. Even getting his vitals is a nightmare....But, all is good and his airways have improved, thankyou, Lord. So HOPEFULLY we can work on getting that trach out. Go back to see the ENT in a month....

Sunday, March 21, 2010

Ear tubes tomorrow

we have to be there at 615, surgery at 7am. It should be quick and I am not expecting to stay too long if all goes well. Then hopefully Camden will be free of ear pain. =)

Saturday, March 13, 2010

Shots and O2

Camden has been on O2 at nights for a while, but I couldnt get him off tonight. I am not worried...I'm realizing this is just Camden. He doesnt seem sick, sounds clear, and is in good spirits, just needs oxygen. ;)
Dr. C came and gave him 2 shots. He was ticked but got over it very fast. poor baby. =(
He is still cruising, but was a bit frustrated trying to get around attached to o2 tubing. Made me think back to ventilator days and how thankful I am that he doesnt need that. That would be super hard to crawl around with. Daddy and I will take shifts tonight. We seem to have a few more nights without a nurse this month. I have first shift, and I am watching the little die hard now. He likes to be silly and tease me through the crib bars, rolls all around off the boppy and makes me have to keep scooting him up. ( we use the boppy up-side-down to try to keep him up on the elevated crib) He also just ruined another pulse ox sensor by yanking on it, and now he is kicking his crib bars. Stinker!

Tuesday, March 9, 2010

Rocking on all fours one morning...then later that day Im....






CRAWLING!!!! =) I love getting into things! My family is WAY excited today, and my OT is going to be shocked when she comes Thursday. =)

Thursday, March 4, 2010

Just more updates =)

Just thought I'd share some updates.
Camden is now a little over 13 mths.

Camden has been wearing his PMV for the past 4 or 5 days and it has been great to hear some sounds today. We aren't positive if he said it, but we all heard him say what sounded as a raspy, "HI". =) He doesn't like to open that mouth, and actually has to be in the mood to want to impress to do it. This video shows what he does and shows how he gags when he does open his mouth sometimes. I am thinking the trach tickles his throat when he opens his mouth. It is doing something to make him gag or cough.

Physically he is doing pretty good. The other day he pulled himself up in the playpen and is now a pro at it. No crawling, but I am thinking that isnt going to happen. That is what the PT is thinking too. He did great in his PT session today and opened his mouth lots for miss R. His left leg seems to still be very weak,(which is not helping him crawl as he flops into frog position) and he actually using his arms and right leg to pull himself into standing position. He will also slowly get to where he needs to be but scooting on his hinder, but he isn't all over the place yet.

Eating is a big NO. Nothing, not even a bottle. He cant tell me what hurts either, so that is hard too. B/T his throat, ears, and stomach you never know if something is hurting him making him. Yesterday I tried a speck of baby food on a spoon and as soon as it hit his mouth he lost it and tried to throw up three times in a row. (remember he cant throw up due to a surgery he had for reflux) I have never seen him gag that hard. I really feel so discouraged with the eating situation and am trying to accept that it is going to be a long road.

There you go! Other than the Camden "norm" we are enjoying him so. He is in love with his siblings and actually gets a bit depressed if they are all off with daddy. I have to take him in each room and show them that they are gone. My kids are also so so wonderful with him. They now all suction if I am in need. (which isn't a lot because Im a bit controlling ;p) But they can do it. If I am driving, they have to and that is a blessing to have them being my little nurses in the back seat. They still fight over him too....drives me nuts at times, but at the same time I am so grateful that Camden has wonderful, caring, siblings. He will be well taken care of! =)

video wont load...will try again later!

Friday, February 26, 2010

short update

I called for the extra o2 tank to be delivered here since o2 has been his new normal at night. Well that is what it took. He hasnt needed o2 anymore. Tonight will be the third night, and I am thinking if he does need it, it will be very little. Camden thinks it is funny for mommy to have to squeeze more medical equipment in his room. Stinker!

Ear tube surg will be March 22nd....

He is tolerating his PMV now. Another sign that he is getting back to himself! =)

Camden and his big bro Pnut who has moved in with him got a room makeover. They have boyish blue walls now and I think Camden likes it. Ok, I actually dont think he even noticed, but he did notice the bright new quilt on Pnut's bed.



Friday, February 19, 2010

More tubes





ENT app today. Camden is now getting tubes put in his ears. Dr M will also take a good look at his airways while in there so I cant wait to see how they have developed. At first I was thinking how this really stinks, but now I am thinking taking some pain from my boy wont be a bad thing. I seriously want to cry when I see this kid in discomfort and he just deals with it, smiles and moves on. My boy is FULL OF JOY. So tubes in his ears may make him a happier baby, if that is possible, cuz he is already pretty happy. =)
No surgery date yet. (The cool thing is that this doesn't even seem like a real surgery to me compared to his other stuff.)

Still on o2 at night, but I can see him doing a bit better. He is actually just on a tiny amount tonight. (I am his nurse tonight, the nurse called in. He likes me more anyways. ;p)

We are really missing his voice! Still not tolerating the PMValve due to this season of sickness. We tried in on tonight, and although he tolerated it a bit better, he didnt make much noise. He just keeps that mouth shut tight unless you really REALLY make him laugh hard. And even then it is just a few seconds. I cant wait until he gets better and can wear it more and learn to talk one day. I cant wait to hear his first word. One day!

Thursday, February 11, 2010

Sick, again

Yep. So we are gonna be hanging around the house even more through this winter sick season. Seems we are coming in contact with sick people and I just cant chance it anymore. We don't even go to stores and have only been to church a few times, but I guess that is enough. He is picking everything up. Less kids/people we are around the better, for now. I am sad about this, but getting sick three times in 2 months isn't worth it. So, I called pulm. today and he is on albuterol every 4 hrs and another antibiotic. He is doing ok and thankfully only needing a tiny bit of o2 at night.

So, I am finding that Camden has an intolerance to corn. ( you are thinking, " You have to be kidding?" Yea, me too....) He isnt handling the pediasure and broke out in hives and vomited through his nissin. He also broke out with burts bees shampoo and the common ingredient in both pediasure and BB shampoo is corn. So I am getting him into the allergist ( why not, we are at nemours all the time anyways ;p) asap to rule it out so I can search for a corn free toddler formula. I think I have one in mind and it is organic and cheaper, so that is even better. (thanks, Nichole for researching)
So for now we are back on baby formula and his skin is clear and he is happier.

Today he had another RSV shot. As usual, it broke my heart and this time he didnt forgive Dr C and cried every time she'd try to touch him.

Went to Cardiologist on Monday and he wasnt quite happy with things. His ventricle is still "thick" and he thought it would thin out by now. He said he needs to keep in mind that Camden had a really bad start and it may take longer. Not too much to tell, just will check it out again in 6 mths and see. He did say he didnt want the trach pulled until we saw him first. I am not worrying about this situation. I just think Camden's body and heart and body went through so much stress and just needs time.

We are trying to add more signing in since this will be his only way to communicate as of now, especially with being sick and not being able to wear his PMV to help him. He knows momma, daddy, please, milk, no, yes, all done. He has actually signed momma, please, and milk. Today he decide to be rebellious and shake his head NO when I asked him to sign please. (His new thing is shaking his head NO to everything.) Definitely need to get to work on more words. Daddy claims he has signed daddy, but I know he was just trying to poke his ears because they hurt him...

I had to order ANOTHER mic key button ( feeding tube) because his busted again. This time I babied it and was extra careful not to pull it out so now I know it is his crazy strong stomach acids popping the balloon inside. Problem was that Humana only pays for one a month and the last time we had to get one was 1/11. This happened 2 days ago so it has been taped to his belly. Call me cheap....LOL I refuse to pay 200 bucks for one when we pay humana an absurd amount a month. So today he has a fresh gtube in.... with a sticky belly. =)

Monday, February 1, 2010

Jenny Craig....

The extra formula is working. He is now gaining too fast, up to over 20 pounds now. I cut back slightly to see if he just slows a bit on the gaining. Gaining is wonderful and a blessing, but a pound a week is over the top. I can't have a fat trach baby that can't move around. =) He is still on formula and now that he is a year we are going to be switching to pediasure soon. Nothing by mouth as of now....the bottle is his enemy again.

Camden picked up another "something" last week and spiked a fever on Saturday. He has been lethargic and clingy, but the fever did not come back today, thank God. I am hoping he fought it off and is done. He is now back on O2, which I expected. During the day off and on, and all night.

We saw pulmonology today and his chest xray looked better than his last. I shared my concerns with Dr H about his breathing and requiring O2 most of this month. She basically gave me her perspective and said they never thought Camden would be out of the hospital as soon as he was and if he did go home they thought he would be on the ventilator for a long time. I think she wanted to say, " Of course he is going to require O2 when he is sick! What do you expect with his lung situation?" ...but she didn't =) I know she was being kind, but it made me feel that she thought I was ungrateful. I am so not. I am so beyond thankful. He is a miracle. The mother in me just always wants better and better for him. This was Camden's first sicknesses and I didnt know what to expect. I knew it would hit him harder, but I just didnt know how hard. It is difficult to take steps backwards. Especially with him being off the vent and off oxygen since the summer. Now he is on O2 so much even when he isnt sick anymore. But this is Camden. He does things differently and he is doing great for what he has been through. =) Just hard to watch him in his little "down" times.

So he did go to the Wolfson " One to Grow On" Marathon. He was one of the 55 children that they sponsored to raise money for the Wolfson Children Hospital. It was rainy and nasty but a special time for us even though he was miserable. I wish he could have enjoyed it. I thought he was tired and anxious with all the noise and people, but that was when he was getting sick.

I thought I would share his achievements at one year old, but we are having an eval Friday with OT so I will share then. =)

He is tolerating his new trach just fine. I had put it in a few days before and he wouldnt quit coughing so I took it out until I talked with the dr. He said to keep trying with each trach change until he gets used to it, but when I tried again he was fine with it. He is now a 4.0 ped.

Friday, January 22, 2010

HAPPY BIRTHDAY MY SWEETS!

Today was an emotional day for me. Getting my shipment of bigger trachs didn't help I'm sure. I was constantly welling up with tears of joy, so grateful for getting to see Camden for his first birthday. For months I truly thought I would never see this day with him. I also had a pit in my stomach off and on thinking back on this time last year. Oh how I am so glad to have that part of his life behind me. And I survived. The Lord brought me through it. Only with Him was I able to move forward. Really. What I have learned this year is indescribable. So, here we are today, one year later.
Happy Birthday, big boy. I so love you. You are a very special gift and I know there are big plans for you.

Nanny and Nana came to see you and brought you some gifts, along with your Aunt Lizzy many cousins!

Also your special Ms Nichole and her kiddos had some noisy gifts to bring you. I can't wait for Emma's next birthday. I am sure there are many noisy dolls out there that mommy can repay her with. ;)





He loved the cards. I knew this when he played with a Christmas card forever last month.
He touched his caked, then realized icing sticks on fingers, and did NOT like that. Of course there wasnt any tasting either.
Fully Rely On God....cake made by Nana =)





Cousin Hannah and Jack below. I love this picture of them.


My grandma and my mom with the birthday boy. =)

Wednesday, January 20, 2010

"It will happen..."

I have told myself and Camden that phrase a lot this week. I am still working on the bottle and he is doing so good. 3 ounces in a thirty minute time frame is the record so far. At times it is a huge fight, but I think he really knows Im way hard headed and he seems to give in at times. AT TIMES. LOL He sometimes gives me this smirk that seems to be saying, " I'll fight ya to the end, momma...get it AWAY" He has thrown the bottle and hit the bottle too. But, I am way proud of him and I am seeing him drink! It will happen....he will one day no longer need his feeding tube.

He seems to be doing ok. Im a bit concerned that he doesnt seem to tolerate his PMV ( cap for his trach so he can make sound and breathe more through is mouth and nose) He also needed oxygen last night. Maybe he was just having a bad night. We'll see how he does tonight.

These days he is loving to play peek a boo and running into our ankles with the walker.

No appointments this week, yeah!

Thursday, January 14, 2010

ENT appointment, and bottle time

The very excited news is that Camden did awesome with his bottle last night. This was totally unexpected! First I tried a spoon with cereal and he completely freaked on me, slapped the spoon, and cried. I almost didnt even try the bottle after that! PLus, I just knew the hospital stay/being sick was going to be a major set back in the eating department. I decided to give him the bottle anyway and I actually saw the liquid slowly but surely, moving towards the nipple. He was drinking it!! 25 minutes later ( he was quite over sucking at this point) I checked the bottle and an ounce was gone! I had praised him while he was sucking, and he is huge on impressing and showing off right now. =) He never gagged once. With oral aversion, you never know, but I am hoping this is the beginning of something. It is still small compared to the big picture, but such a huge step.

ENT today: Camden is getting a larger trach. His airways are inflamed, to be expected, and Im sure being sick was a set back. He still has fluid in his ears and the dr said next time if the fluid is still there, he is getting tubes in his ears. =( Always something, Camden! My poor babe. He was a super grouch too. He is so over the poking. I was a bit bummed about the larger trach. I know he is growing and needing it, it just felt like we were going in the opposite direction. Like he is no longer going to be a "trach baby" but a "trach kid". I never wanted him to be a "trach kid" ;( I am just feeling it wont be leaving as soon as I thought but Camden needs to grow more and get stronger and Im thinking with surgeries the trach isnt the worst thing during this season of his life. It is weird.

Speaking of growing, he is 18.14. Surprisingly through his crazy fast breathing and fever he gained, so that is telling me that I am maybe adding too many calories. I am going to give it another week and see if I need to cut back. I may have already shared this in my last post....cant remember.

God bless!


Tuesday, January 12, 2010

I'm back... well almost =)





Feeling so much better and his personality is starting to come back. Boy did I miss that! He is a funny little booger...
I am thinking today or tomorrow will be the last day/night of O2. His O2 sats are a bit higher today which is awesome. We'll see how he does through the night.

I am so over the feeding tube balloons busting! ( they have a balloon that is filled with a small amount of water once it enters the stomach which holds them in place) Camden's deflated on it's own, again, so Im guessing stomach acids are eating at it. Thankfully I caught it after a few minutes so the hole in his tummy was still nice and open for me to put it back in. But, since there wasnt a balloon to refill, I had to tape it on so that wasn't fun for him when I had to take all that tape off to replace it with the new one. Hubby had to go pick it up since we didnt have any back up. Hopefully this one will last longer. As much as they annoy me, Id better get over and be thankful he has a way to be fed.

He did his first real sign today! I was so excited....We were standing next to his feeding bag and he signed "milk". I have only been consistent with a few signs, and that is one of them. I was so proud. =) My smart boy!

He also (now this is really exciting) licked a cracker!! He has licked a graham cracker before( a few months ago,) but hasnt since. Last night he licked a wheat thin over, and over, and over. We made such a huge deal over it so he was trying to impress us. Then it got soggy and he threw it and wouldnt touch it again, but he did it. That is a really huge deal. He licked it and didn't gag.

While tickling him today and making him giggle, I noticed his top teeth have popped through. (I have to make him laugh to see inside his mouth. He keeps that mouth shut tight most of the time) Totally explains the drooling and gnawing of fingers. He is gonna look so cute with his teefy grin. ;p

I received a letter today from the company that deals with the insurance/home health agency saying that the agency appealed the denial of nursing and with the information they received about us they are going to continue to allow nursing. I don't know the details, but I am assuming this is for night nursing only since the last day for my day nurse will be the end of this month. That will be fine. I just need night nursing so I can function the next day. Hopefully I will still have 11p-7a. Now I have to keep them from falling asleep. Yep, i found one completely OUT the day after we came home from the hospital. =( His feeding pump had been going off and she never heard it. It actually woke me up and I was across the room with my door shut. Yep, I was livid. I had to pray for self control. I was even more upset because I spent an hour and a half with her the night before explaining my concerns for his breathing, the o2 situation, asking her to keep a close eye, etc. It was hard enough to have someone new come watch him and then when I found her sleeping I was sick. I hate that I have to have people come in, but I can't stay up 24-7. =( I know it will all work out but at times it really stinks.
I have a regular night nurse that is here most nights, but I will have to have more newbies come in to fill in the rest of the week. It can be difficult, but I look forward to the day where he doesnt have to be watched all through the night, no trach, no suctioning, no monitors, no feeding tube.....

Licking my cracker.....Oh Im getting lots of attention doing this! Maybe a few more times, but it is starting to feel kinda wet and gross. =P (and check out my new hair cut. It started with an IV in my head, I guess the nurses have never heard of detachol, or whatever, so they cut my hair and my mom had to even it out. One side is slightly balder....)

What?? I never get sick of all these cool cords I have lived with! (what will he do when all this stuff is gone? ...and boy am I glad I cut that crazy hair!)

Love this picture....he reminds me of a little pea in a pod and his face brings joy to my heart.

Sunday, January 10, 2010

Glad to be home =)

We spent Wednesday and Thursday night in the PICU. Still never found out what went/is still going on, but they put him on steroids and antibiotics (which are burning his poor little hind end). I brought him into the pulm dr on Wednesday because I had called earlier that day and felt like he needed to be seen after they were just going to give me some meds over the phone. He was lethargic and breathing like 88 breaths per minute. He is a rapid breather anyway, but this was too fast. The dr thought he should be admitted. He tested negative for RSV and the flu. Since we've been home he is still having rapid breathing (not as fast) and still requiring O2. He hasn't been on O2 in months and even after surgery weaned right off of it. Now, as soon as his oxygen mask falls off, he desats to 86-89 and stays there. We thought he was all better from the cold he had way before Christmas, so I dont know if it just turned into something? Just keeping the pulse ox machine on a bit more now.
I am trying not to get fearful about his little lungs and just hoping that it was from the cold he had and thinking it just kicked his butt. Of course that scares the death out of me thinking what RSV could do to him. Ahhh, flu/germy winter season!!! I cant wait for spring.....
I can only pray that he will continue to grow stronger and stronger so that next time he can fight it even better. He sure tried his best this time and I think he did an awesome job. My little fighter...

Monday, January 4, 2010

My favorite things to do:

....pinching my mom's arm, tearing up the baseboards with my walker, fighting my mom during trach care, sitting up scooting on my but going in circles, round and round, and round, getting hyper over my siblings, ( they are so much fun and I cant wait to see them in the mornings!) blowing and giving kisses, pulling on trach ( I actually pulled it out once and threw it across my crib while my mom was changing it, Im getting fast! ;p) waving bye bye, yanking daddy's beard, and playing with my fisher price mailbox on my play mat! ( btw, my mom loves every bit of this except the trach part =p)

Why arent we gaining this week??? That is the question of the day. =( I just weighed him and he actually lost an ounce this week(now at 18.8) and we have been fortifying all the milk. Guess we'll have to add more. I cant believe how hard it is for him to gain and all the extra calories he has to burn. So, Im going to start adding another tsp to everything, because he is already getting enough liquid.

With the new year I have decided to get super aggressive with the bottle feeding and it is going better than I thought it would. At first I was debating on the bottle, but he tolerates a small nipple over a sippy cup nipple. If he eventually gets good with a bottle and gets over some of this aversion it may be an easy change to a sippy cup down the road. He isnt getting much down, maybe a few mls, but he isnt gagging and is sucking on and off. It is a huge chore and takes time and patience....but every time I just pray that will be the time were I can actually "see" the milk in the bottle slowly going down. He fights a bit, but he isn't crying and will actually play with it at times. I am making it extra thick with cereal so it isnt so runny, dripping straight back to his throat.

I am still pumping but with him turning a year old soon, I am thinking of stopping in the next month or so. I want him to get breast milk as long as possible. It is also a bit emotional for me. I have known he wasn't going to breast feed ( or even bottle feed ) for a long time with his awful oral aversion, but it is really "over" if that makes sense. I havent had my hopes up and I accepted it( as much as you can try to ) months ago, but as I pump less and as he approaches a year old I am sad yet ecstatic. Sad because I feel like I missed so much of the "normal" things with him, but overjoyed that he made it to a year and that I was able to experience Camden's "normal"!!!

My nursing situation is this for now: Every night from 11p-7a and then Wednesdays, Fridays, and Saturdays 8a-4p. I have told them to not send any new DAY nurses and have kept one of my original day nurses who we all love. She knows Camden's needs, Camden loves her, and I dont feel comfortable starting with new people at this point. He just hangs with us all day on nurseless days. The kids love it. That way when Norma does come in I can get a bit more accomplished and know he is being watched. Most importantly she loves Jesus =)
They BAD news is that medicaid is stinking right now. =s Camden has medicaid back up for whatever my private insurance wont pay for and they only paid for one month of nursing, so thankfully medicaid kicked in for the rest. Well, now they say that they are starting to cut my nursing hrs back to practically nothing in a few months.( they even said 2 hrs a day... really? Do they honestly think a nurse will come out for that short of time? ) Well, if he still has a trach that just cant happen, so I'll have to fight that. It just boils down to people working in an office not knowing what a trach is, clueless in the medical field, and people who have never had a special needs child. =( You need an eye on a trach baby. So, hopefully things will work out to where I will have at least 8 hours of night nursing so I can sleep. God will work it out....he always does.
So sorry to vent about this, but I haven't posted about the nursing situation in a while, so I thought Id give an update =)

We go see the ENT next week to get a trach update, and to the pulm. That is it so far, but I am thinking we will be due for a nutritionist visit too.