Saturday, January 31, 2009

Asthma, allergic reactions, and NG problems, another normal day.

Well what a day I have had. Dr R called today and is wanting me to go through pulmonology or cardiology to manage Carson's NG tube. She said the two doctors have completely different ideas of leaving him on it but doesn't want to be in the middle of these two doctors. So how nice is that? I called pulmonary and was pretty much not a very calm person and told the nurse that if no one is managing him, I'll pull the thing out. I'd be glad to let him live a normal life!! She calmed me down and understood my frustration and said they have dietitians in their clinic and to leave everything alone and keep doing what I'm doing. Carson will now have his NG managed under pulmonary. Dr E wants him to get up to at least the 25-33% and then start weaning him. As of his last appointment which was 2 weeks ago, he was around 7%. I'm sure he has gained a little weight since then but we still have a long way to go.

Coltan and Cody are going to spend the weekend with their dad and I asked him to keep them a little longer. I'm now giving Carson 13 doses of medicines, 4 breathing treatments, and 5 feeds a day. I'm mentally and physically exhausted due to lack of sleep. So until I can get Carson balanced, and myself for that matter, I think Coltan and Cody would get more quality time with their dad. I'm really upset thinking this is making me a "bad" mother but I just think this way, I can get some things figured out with Carson. I know that Carson loves his brothers so I will still have them after school and dinners. I just don't know what else to do. I feel very bad because when they come home, I usually have them help me out and I know that they are kids and shouldn't be helping me take care of a two year old.

Please pray for us and that this is only temporary and that Carson and I will get to live a normal life soon. I just want him to be better and I get down thinking about all of this.

So for the rest of my fun adventurous day, Carson wanted a piece of toast with butter and grape jelly. This is something that I have tried to feed him numerous times and he has eaten. So he took about two or three bites and had a terrible allergic reaction. I ended up giving him 4 breathing treatments and he finally looked and sounded better. How many scares is one child allowed to give you in one week/lifetime??? I think he is definitely maxed out on this.

So now we are doing better and I'm hoping that he will get some rest so we can attend some of Coltan's and Cody's soccer games tomorrow. They are in a tournament this weekend.

This is how well he does for the first half of his treatment. They usually last around 7 minutes.

You can see his smile through his mask. That smile is what keeps me going.

Friday, January 30, 2009

Just building .......

So what did we do today???? Well Carson and I went to the doctor and made sure his lungs sounded okay from yesterday's little incident. We are going to put him on steroids for 5 days and give him 4 breathing treatments for one week just to keep his lungs dry. The doctor said he heard a little wetness and if I hear it still on Monday, we will get an X-ray to make sure he doesn't end up with pneumonia. It's always something with my little pork chop. On a good note, he actually ate a 1/2 cup of Cheerios for me for breakfast and then at lunch he ate a whole hot dog and some green beans. Then for dinner it was a cup of applesauce. I know that doesn't sound like a lot but for him, that is a ton of food. I still gave him his 5 feedings so every little bit helps. I'm pretty proud of him for eating so much.

Coltan and Cody had soccer practice tonight so I took them and then off to the grocery store I went. We got home and I made Sombrero Taco Cups. Don't know where the name came from, just a recipe that Chris and I found when we were very young and Coltan and Cody were babies themselves. It is basically taco meat and cheese on a biscuit. The boys love them and they were quick and easy.

Cody had the Indian food today and told me that he didn't feel so well after eating it. I think maybe it was too spicy? He yelled at me and said I should have warned him how nasty the food was. Well, I did the opposite and told him he might like it. How the heck was I supposed to know that my teenage kid would actually listen to me? LOL

After dinner I had the boys help me tidy up the house. I have a man coming out to measure windows tomorrow so I can replace 4 of them. Long story short, Cody broke one last summer as we were minutes from leaving to go out of town for a soccer tournament. He was outside kicking the ball between the garage door and his bedroom window. Apparently he shoot one ball a little to high. Coltan was sitting on the floor playing play station and said it scared the heck out of him. Then last April Coltan and my niece Aspen were inside the house and they were wrestling and they broke out a window. I have two more that have some rotting wood so if you stand in front of the window you can feel a real cold draft. Coltan's soccer coach has reminded me that boys will be boys and I probably haven't seen the last of broken windows. Great.....

Here are some pictures of Carson and I hanging out and building me a brand new house. Tell me what you think? I'm thinking I should get a swimming pool to go right in the backyard.

We must start off acting like we are camera shy. Yea right, my kid not wanting to take pictures. HA HA

A work in progress....

Still concentrating.....

All done mom.

I'm going to design really cool buildings when I get bigger.

Thursday, January 29, 2009

My dare devil swimming at O. T.

So yesterday we were supposed to have OT in the morning but our Therapist had another patient that was going in the pool in the afternoon so they wanted to know if we would come in later so that she could be in the pool back to back. We ended up having so much fun. Carson was so excited about it and didn't want to get out. So after our time was up, I took him over to the showers and washed him off. I literally turned my head for ONE SECOND to turn the water off and Carson bolted!! Next thing I knew, I was hollering at him to stop and running after him and he jumped back into the pool! Thank goodness Nancy was still in the pool gathering all of the toys. She got to him quickly and pulled him up. He scared the you know what out of me. After a little coughing episode, we determined that he was okay. He even smiled at me like it was no big deal. Just to be on the safe side, the doctor that was in the next clinic over told me to give him breathing treatments to make sure we get all of the fluids out. He is a little dare devil and now I know for sure I will have to keep and even closer eye on him. Overall, he had a wonderful time.

When I got home, the boys were already home from school. We decided to grab some dinner. Coltan has been working very hard on his Science Fair project and it is going to be turned in today. Coltan is in advanced science and he is really enjoying it. He starts High School next year and we actually got a packet in the mail today to decided what classes he will take and what electives he wants. I cannot believe it is January and we are already decided this for August. I also cannot believe that I'm going to have a child in High School next year. I think I'm getting old.

Cody has been studying India in his Social Studies class and tomorrow they will have an Indian restaurant cater food for their class. He isn't looking forward to this at all but I told him to try it out anyways. Who knows, maybe he will like the food.

Here are some pictures of Carson at OT today. He pretty much didn't stop smiling the whole time he was there. Including after he scared me. LOL

We started out using all of his muscles. Another one of my cutie

You can't see it but she actually put ankle weights on him to help him use his leg muscles and keep his balance. This pool is really cool. The floor will lower to 6ft or raise up to where there is no water in it. It is used for kids of all heights and also when they raise the floor all the way up, it is used for kiddos in wheelchairs. I thought it was very interesting.

Here we were using our muscles to put water in the yellow bucket and pour it into the red pail. Nancy wanted Dora to have her own pool so that is what we were building her.

Isn't he precious???? I cannot get enough of him.

Here we are balancing on this float and kicking our feet. It is good to use all muscles for his Sensory Processing Disorder.

Still going around on the pool. Nancy was taking him to Dora and he would fetch it and throw it again.

He acted like this was a horse and was saying "giddy up" and "neigh" all around the pool.

Working on motor skills. He used the tongues to pick up the rings.

Putting it all in his pail.

We were squeezing the water out of the toys. Again, using his muscles in his hands.

One more smile for mommy....

Wednesday, January 28, 2009

Poor, Poor, Cody...

Well yesterday was again very uneventful. But I like those kind of days a lot! Carson and I hung out and played all day. He has an etch and sketch and he loves having me draw police cars, fire trucks, buses, mountains, race cars, houses, and ghosts. Then of course we have to play cars and we colored as well. I have been working with him to write letters. He has a long way to go but he can do T, X, O, and H. So for a two year old, I'm very impressed!!

Coltan and Cody went back to their Aunt Allison's again after school and she helped them with more homework and then fed them dinner.

Carson has Occupational Therapy today and then I have a ton of errands to run and I'm going to try and see how much I can get done with Carson. He has a backpack so when it is time to feed him, I will be able to put him on that. Wish me luck because other than doctor appointments, I haven't really fed him with the backpack on the run. Something we will need to get used to.

So because I have SOOOOO much time on my hands, I'm actually crazy enough to take pictures of Carson stealing Cody's cereal. It was really cute and hey, he was eating!!! Now I added up his calorie intake again from yesterday and this is what he ate:
1/2 pop tart 50 calories
1 peach cup 70 calories
1/4 cup of Fruit loops 55 calories
6 oz of orange juice 70 calories.
Total Calorie intake 245........

I tried to feed him turkey, ham, peas, and some of my chicken from dinner and he declined all of that. So when you see how nutritional his meals were yesterday, keep in mind that I'm trying to feed him a well balanced meal. But no luck. So I do feed him what I can get him to eat.

So this is where Carson decided he NEEDED a bite of Cody's Fruit Loops.

Cody trying to eat some himself. Carson was patiently waiting his turn.

Carson actually took the spoon away from Cody and ate the spoonful himself.

Look at the innocent look. The milk dripping down his chin wasn't evidence was it?

Waiting again for another bite.

What? That bite wasn't for me?

He said to me "I'll be right back mom".

He was signing blue. He went and got his own spoon and now he wants a blue Fruit Loop.

Helping himself.

He did tell me that his bite was too much.

Aren't they both cute? Yes I know, I'm crazy!!!

Tuesday, January 27, 2009

Fritz and Company once again.

I'm not sure if I told you but on Sunday night, while I was on the phone with the same person for 5+ hours, Carson decided that he was going to flush some wipes down the toilet. So Coltan went in after him but it was to late. The water just kept coming out and wouldn't stop. I ended up calling my brother in law and he told me to turn off the valve. I had Cody run downstairs to grab all of our dirty towels to throw down and he came up and told me that there was water running through the ceiling. WOW. So we ended up plunging until the water went down and cleaned everything up really good and then I went down and took a look in the ceiling. My brother in law Jake told me that I will need to call the insurance adjuster because the floor will need to be pulled up and ceiling replaced due to mold. Since Carson has asthma, we will have to try and get this done soon. Thank goodness for insurance. I'm also glad I recently lowered my deductible down to $250.00.

Yesterday the boys finally went back to school and they now have tons of homework. Coltan called his aunt Allison about some math questions and she thought she would just come grab the boys and let them spend the evening at her house getting all of the homework done. She is also a 6th grade teacher in the same school district so she knows how to teach them the opposite way I was taught 20 years ago. Thank goodness for her. So because we are just getting better and loaded with all of the homework, I had the boys miss soccer practice last night. They are in another soccer tournament this weekend so I would like them to be at their best so resting now is for the best!

As usual, Carson and I hung out together and I talked my niece into getting us some Taco Bell for dinner which was under $5.00. Carson ate about three bites and was done. So yesterday I totaled his calorie intake and he ate 360 calories. I had to give him all 5 feedings which was almost 1100 calories. One day we will get him going again. Like at Fritz and Co.

Here are the part two pictures of last weekend. After the train show it only seemed appropriate that we take Carson to the Fritz and Co Restaurant. He had a ball as usual. He even ate a WHOLE hot dog. But that was about all he ate for the whole day. I guess we can just live down at the Crown Center and feed him all three meals there!

Here he is with his mommy. I love him so much. Look he is actually eating a french fry!

Cody modeling his hat.

Now Coltan modeling.

Carson acting silly.

Now it is time to leave. He did get a little sad once we hit the parking garage.

Monday, January 26, 2009

A great weekend.

Well the boys stayed home from school on Friday and I did get a call today that Coltan does not have Mono. But the other test results aren't in yet. I will probably have them late afternoon or tomorrow morning. Saturday I decided to get all of us out of the house, I'm just tired of sitting around everyday so thought what the heck. We ended up going to the train show down at American Royal. Not as exciting as I thought it would be but Carson was in heaven. They only had about 8 trains set up and then the other 80% of the exhibits was people selling stuff. I did however buy Carson a train whistle with Thomas the Train and I bought him a really cool lunch box with a Thomas the train cup with straw in it. I'm thinking how exciting it could be to make our lunch and put it in the Thomas the Train and eat it. Doesn't that sound like a great bribe to you?

After that, we left and went to Fritz and Co. I will post those pictures tomorrow since I have a lot between the two. Carson ate a whole hot dog and some french fries. I couldn't believe my eyes.

So Saturday night I decided to go out for a bit. Yes, I left my house without my kids and it felt great. Since I have some followers that shouldn't be here, I will elaborate later. I was home in time for his 12:30AM feeding so it wasn't like I was out all night. But to that special someone, thanks for giving me some wonderful adult conversation and making my Saturday night very special. I had a great time. Looking forward to it again soon.

Here are the pictures of us at the train show. Carson actually fell asleep in the car and we let him sleep until we got inside the show. Coltan and Cody ready to have some fun.......thanks for going with us and acting like you had a good time. They told me that the caramel popcorn was the highlight of the show. I understood completely. I only wish they had more trains set up for us to watch.

Carson showing everyone that he brought his own train.

Watching the train and still holding his own.

Carson acting like a ham.

I took this picture because it reminded me of my Grandfather. When I was growing up he owned several gas stations. (YOU KNOW, WHEN GAS WAS UNDER A BUCK!!!). I spent a lot of time in the stations, running tows with him, and playing in the service bay. I would ride up and down with the cars but I didn't get to come down until they were done working on the car. It was a great way for my Grandpa to watch me while I was with him. LOL

Here is another pic of mommy and Carson.

Friday, January 23, 2009

Nothing to exciting

Well we only had two doctor's appointments this week for Carson. One was his occupational therapy and then back to the plastic surgeon for his chin. So far we are going to finish up his medicine and see if over the next couple of months that the scar goes away. His chin is looking much better now that we don't have all the black infection coming out of it. As far as the Cardiology goes, the nurse said that Carson's doctor had been sick a few days this week as well so he hasn't had a chance to read the monitor yet. Hopefully we will know something by Monday or Tuesday at the latest.

Coltan and Cody have both missed school this week. Cody has missed the last two days and Coltan hasn't even been to school this week. I took Coltan to the doctor and he tested negative for strep but we are waiting for his lab work to come back. Dr Tarvin is thinking maybe mono but also wanted to test him for diabetes. He has currently lost 5 pounds in one week and doesn't have an appetite and is very tired. I'm thinking my 14 year old has mono myself but he does have a history of diabetes on his father's side.

Cody hasn't gone to school in the last two days and he has been running a fever and complains of a sore throat. I also think I forgot to mention that Cody was in a tournament last weekend and my mom said he played great. He ended up scoring 6 goals between the 4 games and missed a few shots and also had assisted in 3 more goals. So he was somehow responsible for 9 goals in this tournament. They ended up taking first place.

Coltan and Cody are supposed to go to their fathers tonight but they also have three other children so we thought it would be best for the boys to stay here and not chance getting anyone else sick. So we are going to hopefully have a nice quiet weekend. Coltan and Cody have at least one game this weekend but we will have to miss so I'm hoping for a great uneventful weekend. I'm going to keep my fingers crossed that they are better for Church on Sunday.

Wednesday, January 21, 2009

I'm still here, just tired.

I know I should be very grateful and very blessed for everything I do have in my life but I'm just in a slump right now and as a lot of my friends have said, fallen off the face of the earth.

We had a pretty good weekend. Friday Cody went with his dad and Coltan stayed back to go to the movies with his friends. Carson and I hung out and played.

Saturday Carson decided to wake up around 4:00 AM and he was FULL of energy. Coltan stayed with me again and we really didn't do a whole lot that day either.

Sunday was Coltan's birthday and we ended up having a great time. We started out with Church and after that I took them to Chris' house so he could take them out to Buffalo Wild Wings. That is Colt's favorite. Then I went back and picked him up and took him out for pizza. He had a friend of his go to a late movie to see Mall Cop. Then back to pick them up at 11:30. We went back to my house and had cake and he opened up his presents. He said all he wanted was money but I went out and bought him two Playstation games and gave him $50.00.

Monday the boys were out of school and Cody stayed with his dad and my mom picked up Coltan and they went to the family birthday party for him while Carson and I stayed back.

I'm just have a lot weighing on me right now and when I'm feeling better, I will post some pictures of Coltan's birthday.

I just wanted everyone to know that I'm fine. I'm just wore down at the moment with everything going on. Thank you to everyone who is out there checking up on me. It sure makes some of my challenges easier when I know I have a whole cheerleading squad on my side.

Friday, January 16, 2009

OT, Cardio, and Pulmonary update

Well yesterday ended up being a very long day for Carson and I. Our first appointment was at 9:30 and we didn't leave til after 4:30. Having to pack for an all day thing is something very new to me as well. I had his diaper bag with his normal things, another bag with all of his meds and feeding pump supplies, then we brought a little back pack for his feedings, and of course my purse. I felt like I was going to a soccer tournament.

We started at OT at 9:30 and as usual, he had lots of fun. We started out on the swings and went on to eating some grapes and then played with some cars and cutting and coloring. How could that not be fun???

We did discuss an action plan for when he is at home with his eating. We are going to offer him three different foods with only a few bites of each type. We are also going to put him on a timer and he will have a set amount of time to eat and then that is it. We don't want him to get lazy with his oral skills but know that the pedisure will still help him out with his calorie intake.

Next it was off to the Cardiology Clinic. We only saw a nurse long enough to download his monitor and put different leads on and have him do it for another 48 hours. I will turn the monitor in on Monday so that Dr A can read it.

After that we decided it was time to go down and grab some lunch. While waiting for the elevator we ran into the one and only adorable Mr Phoenix and his mother. If you think his pictures are cute, you better see him in person!! I got lots of great smiles from him and I think he might have even been flirting with me!

The cafeteria at the hospital is actually pretty cute. They have a jukebox down there that plays oldies and Carson loves to push the buttons and dance to the music. I bought one slice of pizza for the both of us and Carson wanted pretzels. He never touched the pretzels and I think he ate about 5 bites. I started him at 7 AM with a cup of apple juice and at 1 PM, he was still working on the same 9 oz. So lunch was a bust.

Last stop, Pulmonary Clinic. Dr E has decided a lot of changes for Carson to figure out what the heck is going on with him. First off, I don't know if you remember from Oct that we switched Carson from Flovent to Advair. The problem is that Advair has NEVER been tested on children under 4 but she felt like the benefits outweighed the side effects so we went with it. She thought since all of his problems so far are unexplained, we would revert back to the Flovent and throw the Advair out. She decided that the chest pains he is having could be asthma related since I did give him Combivent and he seemed a little better. She said it could be from acid reflux from the NG tube and thought we should go back to Dr Kain to see if he wants to up his Prevacid. The NG tube goes down into the stomach and the tube actually opens up the stomach so this is a very common side effect for people. Next she was thinking that it could just be cardiac related like angina or he was feeling palpations.

She also had her office set up an appointment with the neurologist for Feb 24th. She is going to have him do a sleep study as well since Carson had several bouts of low sats on the pulse ox monitor while we were at the hospital and she wants to rule out sleep apnea. She also wants to figure out why he isn't sleeping at all.

As far as the NG tube, she also is in favor with him keeping it and said that she is recommending this to Dr R as well. His weight in her office is back up to 11.9 but they were quick to point out that their scales may not be calibrated like the one in the Special Care Clinic. She said his weight is around 8-10% and she thought we needed to keep him on the NG until he goes up to around 30% and then wean him one feeding at a time until he can get off and gain on oral calorie intake. So it sounds like all three doctors are in favor of this.

She asked me if we have seen a Psychologist and I told her that we were seeing one in the feeding clinic, but she is going to refer him to the Behavioral Medicine and have him looked at there. We have already filled out paperwork and we are just waiting for an appointment.

So a recap, we are going to spend the night for a sleep study, going back to GI, follow up with the Cardiologist, see a Neurologist, and look into Behavioral Medicine. Doesn't he sound like a Geriatric patient to you???? I'm thinking if I have my hands full now, he is really going to keep me on my toes when he is a teenager. LOL

So after my long 6+ hours at the hospital yesterday, I woke up this morning to snow and it was very cold. So I called Dr S which is the plastic surgeon and rescheduled that appointment to this Wed at 11 since we are already there that morning for OT. I know, bad mommy......

First thing this morning we went to OT. We started off on the swing to work on his trunk strength. Next we balanced some more on the horse swing.

Then we decided to draw roads for our cars to drive on.
Then it was working on scissors.

He was really concentrating to cut in a straight line.

We ate very few grapes to work on our oral skills and then he decided he wanted to smile for the camera.

If anyone knows what this Fisher Price toy is called and where to get on, let me know. It was really cool. It had three blocks in it that you could turn and it made several different faces through all the combos. You place your paper in it and then press real hard with your crayon to sketch the face.
As usual, his OCD kicked in and he had to wash his hands.

This is the jukebox in the hospital cafeteria. We had two appointments in the morning and one very long one in the afternoon so I ran him downstairs for lunch. He loves to pick the music out and dance.
Still dancing. Everyone was watching and complimented his great moves!

On to pulmonary. They have an X Box in the waiting area. It was some Batman and Robin game that I couldn't even figure out. Carson didn't seem to mind.

While waiting for the doctor, everyone felt sorry for us since we had been there since 9:30 so they gave him his own bottle of bubbles to blow. What a lucky boy!!!