Tuesday: January 7, 2014
 
I'm to the point where I'm almost afraid to have a good day because every time we do it's followed by something negative happening. Cooper didn't sleep at all last night. By midnight I had already been up with him 4 times. He didn't even want me holding him. At this point I gave him an 8 oz milk, which he guzzled down. Then I was up with him every 15-20 minutes until 3:00 a.m. I gave him another milk, he drank the entire thing. It started again with him getting up every 15-20 minutes. He would sit up in his crib, scream like he was scared, and hit the railing on the sides. Finally at 4:45 I turned on the lights and said "Good Morning!" I couldn't fight this any longer and asked the nurse to get in touch with the doctor. He ordered another sodium check and a urine analysis. His sodium came back high at 147 and his urine was extremely diluted. He got his meds around 8, refused breakfast, but continued to drink. Cooper's oncology doctor said he was probably acting this way because his sodium was so high and he couldn't get enough to drink. For the rest of the day we had him drinking lots of water. They did another sodium check this afternoon and it was 146, still high.
 
Cooper had a great ST session. He was very happy. We noticed today that he is copying us a lot more than usual. He said "cup" as clear as it could be and seemed to be making new sounds. He was fussy during OT but was able to get some work accomplished. He then napped, but had a hard time doing it. He woke just before his PT session. This time he was only fussy when they forced him into a position he didn't like. He did a lot of standing, but refused to walk for them.

Cooper was in his wheelchair when he returned from PT. He wanted out so I unbuckled him and he stood. Then he stepped down and walked towards me. He wanted to go back to the wheelchair and almost took a step, but realized he was alone. So then he turned back around grabbed onto the rocker, lifted his left hand up (didn't use it though) and took three steps holding on! This was amazing to see!

No lunch or dinner for Cooper today, he refused all foods. That is until bath time when he decided apple sauce sounded good. He ate about 2 ounces and was finished.

Right before bath he did get sick, but we feel it was because he guzzled down about 5 ounces of water and got strangled. He has been fine ever since.

Please continue to pray for Cooper. We really need prayers now. He's having a pretty hard time and we would love to get some answers so we can get him well.

Mommy's Fav of the Day: I love kisses from Cooper!

 

Cooper meeting Reece today!

 

Cooper showing Mommy his teeth

Monday: January 6, 2014

Words can't express how happy we are! Cooper woke around 7 this morning and he was in a good mood. Of course he got a little upset when it was time to take his medicine and draw blood for his sodium check. His sodium was 141-yay! We were able to get him to eat 1/2 a packet of oatmeal for breakfast and drink a little juice. The only way we could get him to eat was to read (Mr. Brown Can Moo, Can You?) while feeding him.

Cooper had speech therapy first. He was fussy, but pretty cooperative. Then he had PT. He worked amazing for her today. He did a lot of standing and walking and we saw him use his left hand. He was standing while swinging, holding on with both hands. His left hand dropped and he picked it up and grabbed back onto the rope! He actually did this two times.

After PT he had time for a nap. He fell asleep to Mommy rocking him and the music teacher playing the guitar and singing to him. He slept until lunch, but wouldn't eat. However, we did try some lemonade and he liked it.

Cooper was happy and in a good mood his entire OT session. This NEVER happens. He worked great and was able to get a lot accomplished. After his 1:00 session he is usually ready for a nap. Not today! We played for a few minutes in the room. Then Randy and I had a meeting with the doctors and therapists so Cooper got to hang out with the nurses and secretary. He loved it. They allowed him to play on the desk, meaning he got into everything!

After our meeting we gave him some caramel ice cream and he enjoyed that. Then we put him down for his nap. He slept well, wouldn't eat dinner, but did drink some more. We played in the floor, went for our walk, took a bath, brushed our teeth, read our stories, and went to bed!

We aren't sure if Cooper's good day is contributed to his good night's sleep, the new medicine, or the combination of the two. I personally think it's from all the extra prayers going up! We thank each of you for helping Cooper's day be so good!

Cooper says, "Do I look ready for a nap?"

 

Making art!

 

Wearing Daddy's hat

Getting into trouble!

 

 

Two medicines shy of what Cooper has to take every morning, then again at night, not including his mid-day doses, stress doses, as-needed doses, or Chemo

Mommy's Fav of the Day: I just love how Cooper is snuggled under that blanket!

 



Sunday: January 5, 2014

I don't even know where to start! We put Cooper down at 8:30 last night and he finally fell asleep around 10:00. At 10:20 his pump was beeping, then again at 10:55. This woke him both times. He was up at midnight, and the nurse had to come in 4 times (I think) between then and 2:30. At 2:30 he got his medicine, waking him up again! He was able to sleep until 3:30 when they did blood work. Between  3:30 and 4:30 the nurse was in our room about every 15 minutes dealing with his pump. Finally, I told myself that if it beeped one more time I was requesting them to take him off his fluids for a few hours so we could sleep. At 5:00 it beeped, but only to let us know it was finished pumping! Thank goodness. When the nurse came in to unhook him, Cooper got sick and threw up his milk. We were told he shouldn't have thrown up milk that he drank 9 hours ago. He was then able to sleep until 9:00. He still just wanted to be held, wouldn't eat or drink, and we couldn't get him to play.

He napped most of the morning and woke after lunch in good mood. We were able to get him to eat 1/2 a popsicle. We thought this would be a good time to try out the new playroom. He was able to enjoy it for a short while before deciding he was ready to go. We were almost back to our room when he threw up the popsicle. This was very concerning for the nurses. After he played in the bath and got his medicines, he was ready for another nap. He was able to rest without being interrupted for a long while. He woke in a good mood, ate 3 bites of a PB & J and some more popsicle. He was very happy playing the floor alone before taking a short walk. He ate some coffee ice cream and drank 15 sips of decaf coffee. We were told, at this point, this is fine. We need him eating and drinking whatever makes him happy. For some reason he only wants coffee or coffee flavored stuff. He has lost a little weight. Chemo can change your taste buds and foods that he once liked, he may no longer. We were told this is a good time to introduce him to new foods that have strong tastes, even spicy items are good ideas. We were also told that lots of kids on Chemo like lemonade and it's fine for him to drink DECAF coffee if that's what he wants. I'm so against this! We are going to try lemonade tomorrow!

After the horrible night last night, dealing with the pump, we found out Cooper actually received to many fluids causing his sodium to drop to 125. The lowest it should be (here on their scale) is 134. This meant he had to have his sodium checked every 3 hours until they got it where it needed to be. The next time they checked it, it was 127, then 133, and finally 137. We are still very concerned with him being so upset, acting as though he is in pain, and getting sick. We met with the a few doctors today. His PEDs doctor did an exam and said both ears have a little fluid and one is red, but not to the point of being treated. She offered pain meds, but Randy and I both feel this is not something we want unless we know what the pain is. We feel as though if we give him pain meds we are only covering up the unknown, so we decided against that. His Chemo doctor did start him on two new medicines: a new one for nausea and the other for tingling in his limbs. Both of these are side effects from Chemo, but we aren't sure if this is what's bothering him. We are seeing a GI doctor tomorrow to see if he can offer us any new ideas.

Cooper went to bed easily and in a happy mood. Praying he rest well and we get some answers tomorrow!

Cooper playing the new playroom

 



 

Cooper enjoying the company of puppies during blood work

It was a rough morning

 



 

Wagon Ride

 

Mommy's Fav of the Day: He is so cute and happy in this picture!

 

He loves the fishing pole because water gets trapped in it and when he hits it on the side of the tub water flies EVERYWHERE!!! He thinks it's funny!

 

After he got his hair washed

Saturday: January 4, 2014

We have had ups and downs today. Daddy was up with Cooper since midnight last night. He is hooked to IV fluids and his port is very positional, meaning that every time he moves it causes the needle to move. This causes his machine to go off (beep) and the nurses have to come in and adjust things, usually waking Cooper. This occurred about every 1/2 hour last night.

Cooper did have an amazing morning. He was in a good mood and did great during all therapies. He started early with his first one (OT) at 8. Then he had speech at 9. She feed him since he hadn't had breakfast. He did eat a small amount but didn't drink anything. He then worked hard during his 10:00 PT session. He did a lot of standing during this session.

He finished therapy at 11 and was ready for a nap. He actually slept until 4:45 but was up several times during his nap. When he woke he was very fussy and acted as though he was in pain. We tried everything to comfort him, but was unsuccessful. The nurses said we needed to try feeding him dinner since he hadn't eaten or drank much today. That caused nothing but a major screaming spell. Since he loves to take a bath we decided to try that. It worked for about 10 minutes. He ate a little ice cream and played but was ready to get out real quick. After the bath we tried a wagon ride. He actually enjoyed that. We walked around the entire hospital, spending lots of time on the 5th floor-our favorite! He feel asleep on Daddy's lap just before it was time to start getting ready for bed. We let him sleep for a while, then woke him to do our nightly routine: bath, story, milk, brush teeth, in the bed! He enjoyed this bath and drank 8 ounces of milk. We thought he would be ready for bed, but NO! I guess we shouldn't have let him nap. He did not want to go to sleep. He didn't fall asleep until almost 10, we put him down at 8:30!

We are praying that Cooper will eat and drink more. If not he will have to have the feeding tube again and we do not want that. We also are hoping that Cooper will sleep through the night. He's still hooked to IV fluids so we are still dealing with the beeping machine! Also, he is due for medicine at 2 a.m. and a sodium check (blood draw) at 4 a.m. I'm really worried about tonight. Mommy and Daddy are beyond exhausted at this point. Tomorrow is our "day out." We really want to take Cooper out, but we are afraid he won't get to go due to him needing more fluids. If he eats breakfast and drinks a milk, we can go!

Mommy's Fav of the Day: Only because I love cuddle time!

 

 

Wagon Ride with a few of his friends

 

Playing ball with Daddy

Friday: January 3, 2014

Today has been a very hard day. Cooper woke every 10-15 minutes during the night because he couldn't get comfortable. I stayed in the chair next to his bed until 1:00 a.m. when I decided to try to sleep. At 1:30 I got up to change his diaper and he began throwing up. He threw his feeding tube up again and was extremely weak. The nurses helped me clean him up and he was able to enjoy a bath. After getting new sheets, blankets, and pillows he was ready for bed again. He drank about one ounce of juice on his own before going to sleep. Luckily the doctor allowed us not give him another feeding tube and let him try to rest for the rest of the night. It was a little after 2 when he was finally asleep. From then on he slept pretty well.

We went for an x-ray at 7 this morning to check his digestive system. They then decided it was time to access his port. We went to the treatment and realized they didn't put the numbing lotion on him. They said they needed to go ahead and they would just use cold spray. The nurse put the needle in, but didn't get blood return. This meant they needed to do it again. I was NOT happy with the way this was going. They pulled the needle out and tried a second time. This time it went in where it was suppose to. I felt so bad holding little Cooper down and seeing him go through all this pain. Then at 9:30 we went for an ultrasound. The doctor said sometimes a cyst can develop at the end of a shunt. After 2 hours we got back to our room.  The results on both the x-ray and ultrasound came back normal.

He missed OT due to us being gone for the ultrasound. It was now time for speech. Since he hadn't eaten or had anything to drink, she said she'd feed him. This actually worked out well because he ate half a yogurt, a few bites of soup, and drank 8 ounces of juice. OT decided to team up with PT for the afternoon session. They had a successful hour with him. He was in a good mood and worked well for them. This session ended at 2, which was suppose to be his Chemo time. However, that didn't start until 4:30! Luckily, he slept through it and woke in a good mood.

Cooper ate very little dinner but was able to drink another 8 ounces of juice. We played in the floor and went for a walk. He enjoyed his bath as usual and drank 8 ounces of milk. It's 9:00 p.m. and he is having trouble getting to sleep. He is hooked to IV fluids so every time he rolls over or moves his machine beeps and the nurse has to come in. Hopefully he will have a restful night.

Mommy's Fav of the Day: He loves to chew on the string 

 

View from our room

 

Cooper standing up on his own

 

Chemo can really wear you out!

Thursday: January 2, 2014
 
Cooper had a good night, but we got worried this morning. He got sick about 8:30 and we could tell he wasn't feeling well. He made it through speech, but fussed the entire time. I was really worried about OT. He fussed but she was able to get him to work. After these two therapies he was able to nap for 2 hours. We woke him for PT so of course he didn't like that. Once again, he fussed but it was a productive hour. He came back very happy and played in the floor for a while. Then it was nap time again. He rested well and woke in a fairly good mood. We played and took a walk. He enjoyed bath time and actually drank 3 ounces of milk! It took him a while to go to sleep because he was so wound up.
 
They moved us into a new room today. Luckily we still have the same view of the water and more shelving space!
 
Thanks for all the prayers. Cooper had a much better afternoon and seems to be feeling better.

Please keep Cooper's friend Maddie in your prayers. Her family should receive some test results tomorrow. Let's pray they will finally receive some answers to help little Maddie.

 

Cooper drawing Mommy and Daddy a picture 

 

Mommy reading Cooper Mr. Brown Can Moo, Can You? I have this book memorized!

 

Mommy's Fav of the Day: Daddy and Cooper playing on the iPad.



Happy New Year

Wednesday: January 1, 2014

I remember when I first started Cooper's blog and I put 2013 at the end of the date and I thought to myself, "why am I doing this, we still have lots of days left in 2013." And, here I am tonight typing 2014!

Cooper slept pretty good until about 5 this morning. Then he and I slept in the chair for a couple of hours before getting up for the day. Which, didn't last long until he was back asleep. He slept until 11, then we woke him up because we worried about him sleeping all day. We went for a walk and then decided to head to the gym to swing. We weren't down there 5 minutes before he started throwing up. We got him cleaned up and put him back down to rest. While he napped Randy and I went for a run. When we returned the nurse said he needed some more blood work. After the third time, they finally got enough blood for the test. His sodium came back low so we are now watching DDAVP medicine, this is for his Diabetes Insipidus. They will be checking his blood again tomorrow. After they got his blood drawn, we decided to walk Cooper in his wheel chair. This was cut short due to him throwing up again. This time he threw up his feeding tube. The nurse removed it and called the doctor. We got Cooper cleaned up and then were told they had to put the feeding tube back in. This time it took a while. It wouldn't go down the first time, but she got it in the second time. However, there was no fluid return so we had to get an x-ray. While waiting on the results we sang "the wheels on the bus" (Cooper's favorite song) about 50 times to calm him down.  This was the only thing that worked. The x-ray showed it was in his stomach but was forming a "C" shape. So, she had to pull it out a little to stop the curling. Once all this was over, Cooper got his medicines and was ready for bed. It was after 10:00 before getting him to sleep.

 He has been such a tough little guy through all of this. It's so hard watching everything he has to go through. We are asking for extra prayers tonight to help our sweet baby boy get better!

Cooper showing off his "Party Animal" shirt, Happy New Year!

He is getting so much better at pushing himself in his chair.

 

Cooper showing me his mouth!

 

Mommy's Fav of the Day: I LOVE this picture! It makes me laugh. He was making so many funny faces. Glad I got this one.

 

Aww...Look how sweet!

 

Brushing his teeth

 

Brushing his hair