Just a quick update!

This is going to be quick....it's been very hard to post to the blog lately. But I wanted to post a few pictures and a little update!
Nicky is doing great! He is gaining weight and inches rather quickly! 2 lbs in 1 month!! Yay to say the least!
Also, one of my little sisters got married this past weekend and Nicky was in the wedding so I have to post the only picture I have for now, until the rest come out!

And here is Nicky on Halloween! He was a dinosaur!!

  At the pumpkin patch...he just loves to be outside!

And the best news!! Nicky will have his last chemotherapy treatment on November 28th!! We are so very excited about this day and can't wait for it's arrival!

Hasn't he been through enough?

I hate writing this post.

I am mad and frustrated that I have to write about this.

On Wednesday, August 29th, Nick went in to clinic to start his next round of chemo. The nurse accessed him, no problems there. She sent his blood off and started his pentamadine while we waited for the labs to come back because his chemo was count dependent, meaning they have to be over a certain number for him to get the drugs. 

His count was 7100. Perfect, let's order the chemo drugs. So we waited for those to be brought up from the pharmacy. Nicky was slightly agitated but I think it was still withdrawal from weaning the methadone and ativan. 

The dactinomyacin and vincristine arrived just after we met with the nutritionist to go over Nick's diet. Nicky's oncologist came in next to go over a few things and the nurse got ready to infuse the chemo drugs.

The procedure is to pull back the syringe to make sure there is good blood return and she says she did so she began infusing the dactinomyacin. Nicky was still agitated but became more so and was flailing his arms around as she was infusing and I'm trying to talk to the doctor and somehow keep an eye on Nikolas. Dactinomyacin is just a 1 ml push over 1 minute so it can be manually pushed or setup to run on the IV machine. I remember it happened so fast, the nurse pushed the chemo so quickly, no where near a full minute. And next, saline must be pushed through the line to make sure the chemo drugs do not have direct contact. So the nurse pushed the saline through his line.

Suddenly, the nurse looks down and says something, I'm not sure exactly what. But the side of Nicky's chest is as big as a baseball. Literally, things had happened so fast but suddenly they were going in almost slow motion.

Oh no, oh no. I don't think it really hit me right away or maybe I just didn't realize how bad this was. 

The doctor asks her which drug he just got. Thankfully, and the only thing good about this, it was not vincrisitine. Vincristine infiltration is usually fatal. But his doctor went to check the protocol if dactinomycin is infiltrated. The nurse left too.

So Maya, our home heath nurse that day (and good friend), sits next to Nicky and starts to squeeze as much fluid as she can back out of the injection site and quite a bit is coming out, which is good. It seemed like the doctor and nurse were gone forever. 

Finally, the nurse and doctor come back and the nurse states that she doesn't think the chemo drug was infiltrated because she had good return just before infusing the drug. The doctor agrees and the protocol just states using ice packs 3-4 times a day for 15 minutes each time for 3-4 days.

Well um, ok. There really is nothing else we can do. Except wait, watch and wait.

Maya quickly looks up the drugs facts for dactinomyacin. It is highly toxic, she tells me the literature states:

Dactinomycin is extremely corrosive to soft tissue. If extravasation occurs during intravenous use, severe damage to soft tissues will occur.

I was not too alarmed at first. Honestly, I didn't really know what happened or how severe things would become. I am a very optimistic person so I always hope for the best and I think in my mind I was really hoping and praying that no chemo drug got under his skin.

They reaccessed his port and gave him the vincristine. They gave us an ice pack to use before we left and then we were sent home....and our horror story begins.

The next day the area around his port looked fine. But after about 36 hours the area became a little pinkish. And it continued to look worse and worse every day.

By Monday the 3rd the area looked like it was getting an infection and it was warm to the touch. We called the doctor on call and they told us to take him to the ER. He was admitted and monitored for the next 24 hours and started on IV Clindamyacin for what looked like cellulitis. They did an ultrasound but didn't find anything significant. But since they really didn't know what to expect they really didn't know what to do or if things would get better or worse. By the next morning he seemed to be doing better so they sent us home.

By Wednesday evening the swelling around the port and on the whole right half of his chest was getting significantly worse, the swelling was spreading to his back. He was also having trouble breathing. I put the pulse oximeter (pulse ox) on and he was satting about 85. Not good and he was miserable. He didn't want anyone touching him or that area. We called the doctor on call and again they told us to take him to the ER or call an ambulance. 

We quickly took him to the hospital again. Again, they didn't really know what to do or what to think except switch him back to IV clindamycin and give him oxygen. He was also on his highest dose of pain medicine, Oxycodone.

By the next morning the swelling was worse and the whole right side of his face had started to swell too, his eye was almost swollen shut. They quickly did an ultrasound to make sure he didn't have a blood clot somewhere. Thank the Lord he did not! But we were still not quite sure why his face was swelling.

He looked so miserable and it was breaking my heart because we could do nothing else but watch in horror as this terrible toxin wreaked havoc on our little boy.

So long story short (because this is getting pretty long) the doctors started him on DMSO or dimethyl sulfoxide. It is sometimes used for extravastation to help with swelling. It is not used very often and is not FDA approved for many uses.

But it helped. By the next day, the swelling in his face had significantly decreased and Nick continued to do better otherwise as well. They determined that the respiratory issues he had were a secondary virus and they continued to get better as well.

Nick was able to go home that Saturday. So overnight the first visit and 4 days the second visit. That's enough for us!

Unfortunately, our horror story doesn't end there.

Through our own research and questioning a former sales representative (he used to sell these types of ports) we could not determine without a doubt that his port was not damaged somehow and that it would be 100% safe to use the port again. The sales rep informed us that the dactinomycin could not damage the port itself but it is possible it could damage the catheter.

So we had to figure out some other way to give Nicky his remaining 4 treatments of chemotherapy. Our options were a PICC line, just like a port except it's peripheral and it isn't completely under the skin or give the chemo through a regular IV. His doctor felt that we could possibly use his port still, after further testing, but we really did not feel comfortable with using it again. And putting another port in was a last resort, at least that's what we were told.

We didn't like either of the options but we went with a PICC line because it's safer and it can be kept in as long as it's needed. And because chemo drugs are extremely corrosive, there is a much higher chance that his little veins could not handle it and he would get infiltrated again.

He had his PICC line placed on September 24th. He was having a broncoscopy and micro-laryngoscopy that day already so we had them place the line while he was, hopefully, still somewhat sedated. They weren't able to get it in right away and we had to have IR (interventional radiology) get it in but we still got it in that day.

He had his next round of chemo on the 26th. It was somewhat nerve wracking to watch them push the chemo drugs in again knowing the potential damage it can cause but thankfully, everything went well that day.

Unfortunately only 4 days after his PICC was placed it broke. Literally, a piece of it just fell off. It was clamped so it was still considered sterile but we had to take him back in the have it replaced. They were able to use the same vein but it took 3-4 tries, and 4 X-rays,  to get the catheter in the right place just above his heart.

And his port had to be removed. The longer it's left in the higher risk of developing a blood clot.

So Nick had his port removed and had a CT of his kidney's on October 3rd. Everything went smoothly except for having to wait an extra 2 hours on top of the 4 normal hours before a CT is done. Waiting is not fun and I have slowly lost overall patience as I've dealt with the hospital staff more and more. Plus Carsen always makes things seem to take much longer than they do :o)


So this is what we have been up to for the past month or so. It's been very hard. Emotionally and physically, especially for Nick. I have been extremely frustrated and hurt by some of the staff at the hospital, especially for their carelessness. Nikolas should not have had to go through this. No child should have to deal with cancer, but to be hurt by the people that are supposed to be helping him is appalling.

We are taking steps to hopefully prevent this from happening to any child ever again.

But I'll leave that part to another post.

Oh and I did want to post a picture of this beautiful quilt make for Nikolas by Barbara....its so amazing and cute!! Thank you Barb!

And Nicky's first walk in a long time!

Nicky was in our local high school paper!

Love that smile!!

Are we there yet!

What a whirlwind!
Nikolas was flown home, not by helicopter but by a small jet. A company called Pedi-Flite and two Leboneur paramedics brought Nikolas back to Kansas. Carsen and I were able to ride too!
The flight was only an hour and there was a little gps like screen I could watch to see how much further we had and it showed how fast we were going!

We got up to 432 mph! That's a speedy delivery!

We arrived at the Kansas City Downtown airport, then hopped on an ambulance for the rest of the ride to the Children's hospital. It was pretty neat to see how they transport patients both by air and in the ambulance!

Nick did great with the flight too, he only slightly dropped his sats on take-off and landing but the paramedics were easily able to adjust his oxygen settings to get him back up.

We arrived on the 17th which was a Friday, and of course, they don't do much over the weekend. But we knew that would happen and we're really just thankful to be home.

We met with ENT and they came up with a plan. They would do a broncoscopy and laryngoscopy in the OR and attempt extubation then. And start steroids on Saturday to reduce swelling.

The plan worked! By Monday he was extubated! When I got to see him again he was on a nasal cannula but he seemed very uncomfortable. The ENT showed us the pictures of his throat....

It was so red and he had almost blister like protrusions all the way down his airway :o( When he cried it sounded so sad and miserable. The next 72 hours are the most critical and they kept giving him steroids and high pressure oxygen to help keep his airway open. They even tried an oxygen/helium mixture but that didn't go over too well.

That first night was rough, we were all just hoping and praying that he would not be reintubated.

Joe stayed with Nikolas in the PICU while at Children's because I am still breastfeeding Carsen and he  is not allowed to stay overnight.

When I came back in the morning, miraculously, he was completely off the oxygen! They weren't even using blow by! (That is where they just put the oxygen tubing close to but not on his face).

Nikolas had been on strong sedatives (Fentanyl and Versed) for about 2 weeks while he was intubated. It would take weaning him off of the drugs for some period to slowly allow the drugs to leave his system. Otherwise, it could cause a lot of adverse affects, including seizures. So they switched him to Methadone and Valium. I questioned the Methadone but the doctors seemed sure it was what he needed to wean off the Fentanyl. That drug stinks, Nicky has had a hard time with it. Including his left cheek turning bright pink and very warm 15 minutes after he gets it. We will be weaning him off for about 3 or more weeks.

Nikolas continued to do better and was moved to the floor on the 23rd. But after being on steroids and all these other drugs for so long we were having a very hard time keeping Nikolas comfortable and he was NOT able to sleep at all. Literally, I think he was awake for almost 3 days straight. It was excruciating and frustrating because not only was he awake, he was in withdrawal pain and constantly cried. And it was the saddest thing, he would cry but barely any sound would come out, it broke my heart!

I don't know why no one thought of it sooner but the steroids were probably causing him to be unable to sleep, but it took a few days before we figured it out. So we stopped the steroids. He was getting pretty high doses of Valium and even Ativan, which usually knocks him out, but it wasn't doing anything until the steroids were out of his system.

I think those few days he was so uncomfortable and wasn't sleeping were some of the worst we've ever had. Joe was at work for most of the day and I had Carsen at the hospital with me so I was trying to manage two upset children in a cramped space with little help. Carsen hates the hospital. He may only be 6 months old but he hates being in the same hospital room all day long with little outside interaction.

So do I.

Finally Nikolas settled down, the steroids were finally out of his system and he was able to sleep. We got to go home on the 26th. Nikolas was in the hospital for 23 days (20 in the ICU) and was away from home for 28 days. We were all very excited to be in the same car together!

Well I have been trying to get this written and posted for quite awhile but things have been hectic since finally being able to go home. I have a lot more to write about but this post is long enough....I guess I'll start another one :o)

This picture is at St. Jude when he was still intubated and having a 24 hour EEG done. 

He wasn't awake for very long but gave still gave us a great smile!

Happy Birthday Little Star!

I can't believe it's been 2 years since Nikolas was born....

Honestly, it feels like he's been on this earth much longer. I feel like he's been through so much, much more than most people will go through in their lifetimes. And with so much grace and joy as he still continues to smile through it all. I just wish it didn't include so much pain, but I think that God made Nikolas special so that he can handle it much better than anyone else would be able to.

Even though the past two years have brought many ups and downs, Nikolas has taught me so much.

He has taught me how to love someone, unconditionally, not expecting anything in return. He has taught me that even though the world can be full of so many terrible things that it's still okay to smile. And to smile and love every moment because every moment is so precious.  He has taught me to enjoy the little things, the things that really matter. He has taught me to care for someone and to push to get whatever he really needs done to actually get done, especially in hospitals and with doctors and nurses.

I love this little boy more than I can ever explain. I think any mother could say that about their child but somehow, I feel that my love for Nikolas goes beyond that. That my heart has expanded so much more than I ever thought for that little boy....I love my 3 other children just as much but with Nikolas, it's different somehow.

Nikolas is still having a hard time recovering. They extubated him on Wednesday the 8th. But he was having a hard time breathing and his oxygen levels kept dropping to dangerously low levels so they tried to put him on a cpap/bipap machine that uses a mask to blow oxygen into his lungs. He did okay on that for a couple days so they were able to transition him to a high flow nasal canula. But Friday evening he started having a harder and harder time breathing and his lungs sounded very course. His chest X-rays also started to look worse and worse...his lungs were slowly filling up with fluid.

And by Saturday morning his right lung had collapsed and he had to be reintubated for the third time.

My heart broke as I watched his limp body on the bed, trying to get a tube down his throat so he could breath. The first one they tried was too large, it was the same size they had used during the last intubation and surgery but his airway was so swollen that it wouldn't fit down so they had to use half a size smaller.  Nikolas has always had issues with being intubated. Either with stridor or requiring oxygen for 5-6 days after being intubated. His epiglottis has been described as floppy and very narrow and it may be possible that he somehow reacts to the plastic on the tube.

But at this point we don't know what to do. We have tried multiple attempts at extubating, including using steroids and breathing treatments but his little body cannot handle working so hard to breath...especially after such a major surgery. We need to consult with pulmonology and ENT to figure out how to get him off the vent.
And hopefully soon because mechanical ventilation actually can cause the lungs to collapse so the longer he is on the vent the harder it will be to get him off.

There is talk about transporting him back to Children's Mercy via helicopter, as soon as Wednesday. Which would be so helpful to myself, it's hard to be away from Joe, Brianna and Benjamin. And Maya (also Aunt Yaya) has been so gracious to come with us to help....a lot..... and I know she needs to get back home to get things done as well. But at the same time I don't want to make a bad choice just because I want to get home.

St. Jude is amazing, it really is but since they are so specialized they may not see many kiddos like Nikolas and not have the experience in helping him the way that a larger hospital like Children's would.

 We will see what the next few days bring us and we will just continue to pray that Nicky's little body will heal faster than ever possible!

 Carsen wants those tubes out!

This was from the night before surgery...enjoying some chocolate!!

Birthday cake from the hospital :o)

Fun birthday balloons!

More presents and balloon from the hospital....they are really too sweet!

Aunt Yaya loving on Nicky

A Miracle and Recovering

Sorry for the late posting. I've been able to update Nick's Facebook page, Brighten the Light for Nicky, more constantly but because of internet issues here at the hospital it's hard for me to be able to post to his blog.
Nick had a very full week of appointments with many specialists, from anesthesia to nephrology to neurology and of course oncology. The doctors are very nice and really seem to want to get to know him so they can take care of him better overall.
Nick also had many tests. He had a CT of his abdomen, an ECHO, an EKG, multiple lab draws and urinalysis'.
Nick's ANC (absolute neutrophil count, when it's lower he can get sick very easily) on Monday and Tuesday was 400 even. He his ANC had to be over 500 for him to be able to have the surgery.

We prayed and we asked many others to pray with us that it would reach 500 so he could have the surgery.

They rechecked it on Thursday. It was 500 exactly! I could barely believe it! God is so amazing!

Then the surgeon went overt everything with us, how he thought he was going to be able to remove them and what could possibly happen if he couldn't get all the tumors from each kidney.

Nick had surgery on Friday. Dr. Davidoff blocked the whole day for his surgery, knowing it would be difficult and extensive.

Nick went back about 7:30 for anesthesia but they didn't actually start the surgery until around 10 a.m. They put in an epidural and tried to put an arterial line in and they stuck him probably about 20 times, including trying his femoral artery in his groin area. But could not get it. Thankfully, Nick was out and didn't feel it, but he has the marks to show for it.

The surgery took a total of about 8 hours. Then the surgeon came out to talk to us.

He was able to get all of the tumors!! Amazing! Praise God!

There is always some microscopic cells left which will be treated with chemotherapy and possibly radiation but he was able to remove them! He said it was very difficult but he was happy with the results.

Nick had to be kept intubated and sedated for the rest of the day and they were able to extubate him the next morning. He is also very swollen, all over. He can't even open his eyes they are so swollen. When they do a surgery like this, and remove half of each kidney, they push fluids like crazy trying to make the kidney's work hard to keep them functioning properly.

He has had issues with pain and keeping his oxygen up since.

Nick's sats dropped really low, into the 60's. He was coughing and seemed to be getting some stuff up so this other nurse comes in and started to suction him but she used an adult size suction tube and she must have stuck it way back in his throat because he started to bleed like crazy. Normally if I suction him at home he might bleed a little if I'm not careful, because his palate is unrepaired it leaves a lot more of his throat exposed than normal. Well this nurse was not being careful and he's had more and more issues since. It obviously caused swelling and a lot of irritation. The doctor was very concerned because of all the blood.

Well he keeps desaturating which requires him to be bagged, which is just more pressurized oxygen which pushes more air into his lungs. He does not like masks or anything on his face for that matter and of course he just keeps knocking things away because who wants air blowing in their face?

And this morning his sats dropped really low again, into the 40's, and he was having a hard time recovering. We tried many different things to try and keep his oxygen levels up. 

But they had to reintubate him. This is horrible. This is about 6 steps back. Being intubated is very hard for Nick and to get as far as we did and now we're going to have to do it all over again is gut wrenching.

He also is requiring plasma and blood. 

My poor baby. I knew this surgery would be hard but this is far worse than I expected. We haven't even gotten to see him open his eyes yet and now he's sedated again. 

Please pray for him, pray that he can heal quickly and recover from this difficult surgery.

We made it!

We are in Memphis! We got to St. Jude’s Sunday evening, after a long 8 hour drive. There wasn’t any time to relax once we got here either. We had to go straight to the hospital to check in with admissions, then head over to triage to get clearance for housing. 

We are staying in the Grizzly House. It is amazing, just like 4 star hotel. It is such a blessing to not have to worry about housing while we are here. St. Judes has 3 types of housing depending on how long the expected stay will be. The Grizzly house is from 1-7 days, the Ronald McDonald House is 7-90 days and the Target house is from 90 to 365 days. The Grizzly house is right on campus so we can walk to the hospital every day!

Everyone here is so helpful and friendly. The nurses are excellent and they really care about their patients. They spare no expenses. St. Judes is really a wonderful place!

This is exactly where Nicky needs to be. I am so thankful the Lord opened the door for us to come here. 

Nick’s first day included a lab draw, which couldn’t be done through his port because his port is heparin locked and they needed to draw labs to check his coagulation factor and heparin would affect the results. So they had to stick him. It took 3 tries before managing to get just enough blood for the tests they needed. Nicky has always been a hard stick, even vascular (they use ultrasound to find the vein) has issues drawing blood or placing IV’s. 

But that was no fun, Nicky did really good though and only winced at the pain...my little super hero.

Then we had appointments with anesthesia, neurology and picking up contrast for his CT tomorrow.

We also found out that during surgery Nick will have 2 peripheral IV’s, an arterial line, possibly an epidural, have his port accessed, and he will have to be intubated for 2 days or so, which just gives him more time to heal. It’s going to be very scary seeing him with so many tubes and cords and wires after the surgery. I just get a knot in my throat thinking about it....I just want it to be over and for him not to feel any pain from the surgery.

Thank you everyone for all the prayers and the sweet comments... I do read each one (here and facebook) and appreciate all of you! We are so blessed to have so many people help support us through this journey.

St. Judes it is!

The St. Judes team met on Wednesday and a surgeon, Dr. Davidoff, feels that he might be able to remove Nick's tumors! He has dealt with many Wilms tumors, including quite a few bilateral cases. But it will be a dangerous and risky surgery. The tumors are intertwined with the renal artery and vein, on both sides. 

I am very nervous about this surgery. Nikolas will be under anesthesia and will be intubated for a long time. But it is the best shot I feel that we have for Nikolas at this point. I honestly don't feel that he can take much more chemotherapy, especially stronger drugs. 

We have to be in Memphis on Monday, July 30th. The day before big brother Benjamin's 4th birthday.... so we will definitely be celebrating early!

And surgery is scheduled for August 3rd. The surgeon said he will have to book the whole day because it will be a long and difficult surgery. 

And, we have been renting and are planning on buying eventually but with everything going on and other issues, things have been taking awhile to get going with the house buying process. But our lease is up on July 31st and we can't afford to extend our lease any longer so we will probably have to move in with my parents for awhile. It will be tight but I am just thankful they live close and are willing to take us in. Plus, Brianna and Benjamin won't have to switch schools. 

God is in control and he has opened certain doors for us. We just have to trust Him that we are making the right decisions and pray that He will give us peace in our circumstances. a

Also, we have wristbands for sale to show support for Nikolas and to help us pay for a vacation for Nikolas to go to the beach and Morgan's Wonderland!! 

Nikolas has a Facebook page called Brighten the Light for Nicky and there is a link on the page to buy them. I will try and post a link... 

Click here to buy a band to show support for Nick!

St. Judes?

Unfortunately we have reached a point in fighting Nick's cancer that we have decided to reach out to other hospitals. Nick really needs aggressive chemo and radiation at this point. We discovered through our own findings by going through Nick's medical records that the histology for his cancer showed that it is resistant to chemotherapy and has a high rate of relapse. They never told us any of this. But Nicks oncologist wants to continue with the same chemo regime we've been doing all along.... ?!? That does not make sense to me.
And with this last CT showing they have only shrunk 10% after the 2nd round of chemo we need to do something different. 
Please pray that St. Jude's will be able/willing to accept Nick's case!

Real purpose

"Tomorrow morning," the surgeon began,
"I will open up your
heart..."

"You will find Jesus there,"
the boy interrupted...

The surgeon looked up. Annoyed. 

"I will cut your heart open," he continued,
“to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in
there," said the boy.

The surgeon looked to the parents, who
sat quietly. 

"When I see how much
damage has been done, I will sew your
heart and chest back up, and I will plan
what to do next."

"But you'll find Jesus in my heart. The
Bible says He lives there. The hymns all say He lives
there. You'll find Him in my heart."

The surgeon had had enough. "I will
tell you what I will find in your
heart. I will find damaged muscle, low
blood supply, and weakened vessels.
And I will find out if I can make you well."

"You will find Jesus there too. He lives there."

The surgeon left.

Later the surgeon sat in his office,
recording his notes from the surgery,
"....damaged aorta, damaged pulmonary
vein, widespread muscle degeneration.
No hope for transplant, no hope for cure.
Therapy:
Painkillers and bed rest.
Prognosis:”

Here he paused. 

“Death within one year."

He stopped the recorder, but there was more to be said. 

"Why?" he asked aloud.
"Why did You do this? You have put him here; 

You've put him in this pain;
and You've cursed him to an early death.
Why?"

The Lord answered and said, "The boy,
my lamb, was not meant for your
flock for long, for he is a part of My
flock, and will forever be.
Here, in My flock, he will feel no pain, 

and will be comforted as you cannot imagine. 

His parents will one day join him here, and they will know peace. 

My flock will continue to grow.."

The surgeon's tears were hot, but his
anger was hotter. "You created
that boy, and You created that heart.
He will be dead in months. Why?"

The Lord answered, "The boy, My lamb,
shall return to My flock, for He has
done his duty.I did not put My lamb
with your flock to lose him, 

but to retrieve another lost lamb."

The surgeon wept... 

The surgeon sat beside the boy's bed; 

the boy's parents sat across from him. 

The boy awoke and whispered, 

"Did you cut open my heart?"

"Yes," said the surgeon.
"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

Author
Unknown - Celebrate Jesus in 2012

Back again...

Well Nick got out of the hospital on Sunday. It was quite an ordeal to get out of the hospital. In the morning the surgeon said he looked good enough to go home so they would put the orders in to discharge us.

Well we waited....and waited....and waited.

I kept asking the nurse and she would say she had paged the team but they had not answered her back.

Nick had also had a stool earlier that morning that look and smelled like c. diff. I just knew he had it again but the doctor said he didn't think so because he had not had any antibiotics so it would be unusual that he would have it. But I told him its the smell, c.diff. has a very particular smell. So he ordered it to be tested.

Of course, when we finally got discharged at 9:30 p.m. and about an hour after we got back home the doctor called and said that he tested positive for c. diff. and would be calling in a script for Flagyl to the pharmacy.

And yesterday evening Nikolas just couldn't get comfortable. His nurse, Maya, checked his stomach and he was very distended and his bowel sounds were hyperactive and he hadn't had a bm since Sunday. So we called the hem/onc nurse and told her what was going on she told us to go to the ER to get him checked out.

Long story short, he was admitted and they are giving him IV flagyl, miralax and a suppository. With just having surgery and the c. diff. they have to be extremely careful. The c. diff can be very dangerous and cause a lot of complications. So far though, he seems to be doing great.

On a brighter note, we will be getting an MRI of his brain tomorrow. We've been trying to get it for awhile because of increased seizures and this raised area on the side of his head that seems to new and getting bigger.

We're praying to be out sometime after the MRI tomorrow.

Pain...

Sometimes I just wish I could scoop my baby up and run away with him. Take him away from all the pain and hurting he has to go through.

He doesn't deserve this.

He deserves to have a happy, healthy life. Where he can run around and play like any almost 2 year old does. He deserves to eat pizza and spaghetti and ice cream and make a mess while doing it. He deserves to fight with his big brother over which car to play with and with his big sister over making a mess with her makeup. He deserves to go to Disney Land or Morgan's Wonderland or to the ocean to hear the waves and dig is little feet in the sand. He deserves so much more than I could possibly ever give him.

He deserves to cry over something other than being in pain or being scared from the loud noise his suction machine makes.

I don't know why my little boy has to go through all these things.

But I do know that he knows that he is loved. And every time I kiss his face he knows it's me (or his daddy because of his scratchy whiskers). I know he sees angels. I know he has more beautiful dreams than anyone could imagine. I know he loves the twinkle stars in his music therapy room at the Lee Ann Britain Center and he loves when I sing Twinkle Little Star to him.

I know that one day, when we are both in Heaven together, we will dance together and laugh and he will tell me how much he loved the loud, squeaky kisses I always gave him.

I know that God loves him more than I do and that He has Nikolas in his arms.

This may sound pessimistic to some or pitiful or just not possible but I have always known that Nikolas will not be on this earth for very long and I believe the Holy Spirit has been getting me ready for when he will leave this earth and go to be with Jesus in Heaven.

I don't know when but I am grateful to the Lord for every minute I have with him.

But I do know that I want to make his life on earth as happy as I possibly can. I want to make sure every day is filled with fun and smiles.

I am tired of setting aside and not taking enough stand for my little boy. I want the best for him and I want to make sure he is getting the best because he deserves it.

I'm sorry if I hurt someone's feelings along the way and I will be as nice as possible but I just can't let the little things go by anymore.

I love my son very much and my job as his mommy is to make sure he is taken care of and that is what I am going to do.

Sorry for the rant, I just wanted to express my feelings and how much I love my little rockstar.


Thank you for all of the recent prayers for Nick and for the monetary blessings given to our family for Nikolas.

Keep praying, we have a lot more fighting to do.


Here's a sweet video I took of Nick's big brother, Benjamin, singing his favorite song to him

Sorry, late update... Nick's surgery was successful. Praise the Lord! So we're now waiting for the pathology report to come back so we know what are next step in this journey will be. Nick was in a lot of pain right after the surgery but he had a pain pump and we got it under control easily but it depresses his breathing so he needs oxygen. The surgeon said since he had to move Nick's small intestines completely out of his body during surgery it has caused his bowels to stop working. So hopefully by not feeding him they will wake back up soon. So we tried clear liquids yesterday but his stomach started to get distended, so we stopped clears too. We're hoping that today he will be able to start clears again today, but we have to wait for the surgeon to come by to see him. So at this point we are just waiting, please pray the results come back today. Nicks oncologist is not here tomorrow and his will be doing rounds all next week so it may be hard to get it to see him and apparently we can only get the results from him.

Surgery today

We are in the surgery waiting area waiting for an update from the surgeon. Nick went back at about 7:30 a.m.

We were able to meet with the surgeon yesterday at his pre-admission testing appointment. He seems like a good doctor and he's dealt with bilateral Wilms tumors before. But he said that Nicks case was the worst he had ever seen.

Nicks tumors are shrinking towards his blood vessels, or the tree trunk of the kidney.

More bad news, they are inoperable.

The best hope we have now is that chemotherapy and radiation will shrink them away completely.
This surgery is a big deal. It's going to determine a lot. It will also make Nick's staging change. He will now be at stage 4 instead of 5. It sounds better but when you look at the staging it's actually worse.

I will update as soon as he's out of recovery I get a chance. Please pray!!

CT results

We got the results of the CT today.

It's not the best news, it's not terrible but not what we hoped for.

The right one has shrunk a few centimeters, and the left one, which was the larger one, has shrunk from 4.5 inches to 3.8 inches.

But the bad part is they are shrinking towards his blood vessels, making them inoperable right now. So he'll need an open biopsy to determine if we're using the right chemotherapy drugs for his type of cancer.

Also, the doctor that our oncologist originally consulted with is going to be out of town next week and is unable to meet with us or do the biopsy until the June 26th. I don't know if I feel comfortable waiting until then. It's standard protocol to do either surgery or a biopsy during week 13 and June 26th will be week 14. I don't know if thats a huge deal...I just hate to wait and put stuff off till later when dealing with Nick's tumors. I would hate for him to be getting the wrong chemo drugs.

The wonderful director of the Britain Center that Nick goes to is friends with an oncologist at Children's and she gave us the name of another surgeon that has dealt with Wilms' tumors so we're trying to decide if its a good idea to consult him or just wait until our original doctor is available.

We're praying for wisdom, we just want whats best for Nick. Please pray with us.

We have chemo again tomorrow and we really need to decide by then if we want to check this other doctors schedule and see if he is available to do the biopsy or just prayerfully wait things out.

Another Big CT

Tomorrow is the next big CT. This will determine what type of surgery Nick will have, either a biopsy or resection of the tumors from his kidneys. Hopefully, prayerfully, the tumors will have shrunk enough so the surgeon will feel confident enough to do surgery and leave plenty of good kidney tissue behind.

We have to be there at noon, the CT is scheduled for 2 p.m.

We also started a new medicine to help with the neuropathy we think Nick is having, it's called Neurontin. His neurologist thinks that the oxycodone and lorazepam Nick has been taking for pain and agitation are causing his lowered tone and breathing issues. So Nick's oncologist wants us to hopefully stop, or at least greatly decrease, the pain medicines. And so far it seems he seems to be doing great on it, but it probably needs to be increased right after he gets his weekly chemo meds. Surprisingly after week 11's chemo, which is all three drugs, Nick didn't vomit at all, not even once. His nutritionist told me about a study one hospital did on kids that were learning to eat after having a g-tube of some type and Neurontin seemed to help quite a few of them, especially with the gagging issues they were having.

I will update as soon as we know when surgery is scheduled. Please pray for whatever is best for Nick, which at this point is that they have shrunk enough to remove them completely!

Another hospital trip...

Well we had another trip to the hospital. But, thankfully, we are back home now.

Last friday I woke up at 7:15 a.m. to his heart rate being elevated and setting off the oximeter alarm. I thought he might be in pain so I went and gave him pain medicine. I repositioned him and I could immediately tell he had a fever, he was burning up. I took his temperature and it was 102.0! We are supposed to get him in within and hour of the temperature reaching 101.5 to get antibiotics and I had no idea how long he had this temp. He was also bright red and taking very shallow breaths.
I called the on-call nurse practitioner and she told us to go in immediately if I felt comfortable driving myself, otherwise call 911.

I made a few phone calls and his Aunt/nurse, Maya, was able to go with us. I got ready as quickly as possible and we rushed out the door. Traffic was bad but we eventually got to the ER. The nurses moved quickly when they realized that Nick was having difficulty breathing, he was retracting in his neck area. They gave him oxygen and within 15 minutes he was doing much better, just with the oxygen. His oxygen saturation never went down, which is odd, but just a little oxygen helped him a ton. They also took blood cultures, catheterized him for a urine sample and gave him a broad spectrum antibiotic.

They took a chest x-ray and compared it to the one he had about 5 days earlier and noticed some changes and decided it looked like he might be getting a little pneumonia but the antibiotic they gave him would help take care of that. But he was still working to breath so they decided to admit him.

Nick slept. He pretty much slept for the next two days.

They continued the antibiotics and we waited to see if the blood cultures grew anything.
The next day he was doing fine! It was so strange. He was still retracting a little and he still has the stridor but he really was doing so much better. But they couldn't release us until the blood cultures came back.
They came back the next day and they were negative but his urine grew pseudomonas and a strep.

So we got to go home Sunday on two antibiotics.

Nick is doing good, he is acting like himself again, well like himself on chemo. He is still very weak and is not able to hold onto his toys and play like he normally is able to.

He just seems so frail and every day it seems like he is dealing with something new. It breaks my heart to watch him fight so many different obstacles. The best I can do is hold his hand to help him through everything and pray that God will heal his little body.

Thank you so much for the kind words and for the prayers. Please continue to pray for little Nick, he is only halfway through chemotherapy and still has a lot of fighting to do.

Trying to get him to smile....

Got it!! 

Sweet face boy!

Stridor

Well there always seems to be something happening with Nick, medically speaking that is. A week and a half ago he was diagnosed with C. Diff. For those that do not know what that is, it is one of the worst things you can 'catch', in my opinion. It is terrible diarrhea that can cause severe stomach pain and cramping. It is highly infectious because the only thing that kills it is sodium hypochlorite, or bleach, at least that is what I have been told. Alcohol does not kill it and as many nurses and doctors preferred method of 'washing their hands' is using hand sanitizer, you can quickly figure out why its running rampant through hospitals and long term care facilities.

Terrible. Just wash your hands people.

Anyways, so he just finished his round of Flagyl, an antibiotic, to get rid of it. But the flagyl has many side effects as well so Nick has had bad stomach pain from that and it was causing him to throw up sometimes as well. So glad that part is over. Then almost as soon as he was done with the antibiotics he started getting stridor, which is a high pitched wheezing sound when breathing. This usually comes along with a cold, the croup or asthma but Nick had none of those, so we brought him to the ER. They gave him a breathing treatment and other steroids but they didn't seem to help at all so they knew something else was going on. They put a scope down his nose to look at his upper airway and see if they could figure out what was causing it. They took neck and chest X-rays. The resident though he saw some narrowing in Nick's airway right below his vocal cords. So they decided they needed to put him under anesthesia to figure out why he has narrowing there. As the surgeon described what they had to do he mentioned the word tracheostomy.

Oh no, not that. Please, Lord don't let him need a trach, I prayed.

So they did the scope and determined there was not any narrowing in his airway but his epiglottis was very floppy and he had two ligaments that were really tight so the surgeon cut those hoping it would help with the floppiness and the stridor. Yay, no trach for now at least! But he wasn't sure why all of a sudden his airway was becoming floppy or losing tone. But ever since a short while after Nick started chemo his tone in his legs and hands and arms started to change, he was more floppy.

Bingo! That was it, his airway must be losing tone like the rest of his body. But why was he losing tone? Hopefully, he has not had some type of neurological change.

Obviously, Nick was admitted and they consulted with neurology. We had never seen this neurologist before but he seemed extremely intelligent and he felt that Nick's decrease in tone was due to all the medicines he's on now, especially the chemotherapy drugs. And that the change in his tone would go away once the medicines are stopped and there were not any neurological changes.

Then the neurologist started putting Nick's symptoms and characteristics together and asked us if anyone ever tested Nick for any abnormalities on chromosome 11 the short arm. I told him I didn't think so. He explained that with Nick having Wilms' tumors now that the possibility of him having a deletion there or an abnormality was greatly increased and he would be surprised if that wasn't the case for Nick.

Really? Another different genetic diagnosis? I am just starting to get used to the last one! Well either way I felt that we should figure out if he's been tested for it before and if not that we would go ahead and test him for it. There were two specific syndromes that he mentioned but he had a really thick French accent so it was a little hard to understand which ones he mentioned.

So we'll meet with the genetics doctors again and see what they come up with.

Nick still has the stridor and they are not hugely concerned about it and they don't think it's going to get worse but if Nick gets any type of cold or congestion then he could have a really hard time breathing with all of the secretions. If it became severe enough he would need to be intubated. So we are really going to have to watch him and hopefully we can get his insurance to cover an oxygen saturation machine so we can monitor him at home better.

But (there's always a but) his blood levels are low, especially his hemoglobin. It was 7.2 yesterday so they did  a blood transfusion today. And they want to keep an eye on him again tonight to make sure his breathing does not get worse, then we should be able to go home tomorrow. Transfusions scare me so I'm glad they are keeping him overnight, just in case he has a reaction.

This was a little after the transfusion, his color is already perking up and he seems to feel much better!

Thank you for the prayers and thoughts. Please continue to pray for Nick, that he doesn't have a reaction to the transfusion and that he will stay well and not get sick.

Good news?

Well Nick's oncologist called me right as we were leaving from the CT. His tumors have shrunk 50%! Praise the Lord!
But the surgeon does not feel as if he can resect the left one and leave enough good kidney tissue behind. So the plan right now is to do 6 more weeks of the same chemo medicines then do another CT.

Here's a picture of before and after:

As always, thank you for the continued prayers, they are still very much needed!

Big CT tomorrow

Nick is scheduled for the big CT tomorrow. This will be the big turning point in Nick's treatment. It will determine if we are able to do surgery to remove as much tumor tissue as possible or if we need to do 6 more weeks of chemotherapy before attempting surgery. I am not able to feel the tumor on his left side any more, definitely a good sign. We should have answers tomorrow, or at the latest Wednesday.

Nick is such a little fighter, he is so strong. He seems to run out of energy faster than ever before. He still plays with his toys and smiles and laughs as much as we can pull out of him but he drains pretty quickly and sometimes will sleep 18-20 hours a day.

He still has a little hair, not much and it's starting to look a little odd but he can't stand the sound of the hair clippers, he cries as soon as they are turned on, so we will just let it fall out slowly. A cute hat is still on my list to find.

I will update as soon as we find out the results and have an answer from the surgeon.

Please continue to keep Nick in your prayers.

Baldy

Nick started to loose his hair on Thursday. Right now it just looks like he has really thin hair, its not patchy or weird looking either. I am sure in the next few days it will be gone. Maybe we can find him some cute hats!

He did get a fever the Thursday before Easter so we had to go to the ER for a dose of antibiotics. We had an awful ER experience because they had a 'newer' nurse trying to access his port and when that didn't work they had the same nurse try to get an IV in his foot. That didn't work either and they had another nurse come in a try his wrist which didn't work either. Finally they had a nurse from the hem/onc floor come and try his port again. Finally she got it. I will never again allow a nurse that does not have a ton of experience to access his port!

He was obviously quite uncomfortable (not just from being poked so many times) so they decided to admit him. He was constantly grinding his teeth and crying out, my heart just ached for him. I didn't know what to do to help him feel better. They thought he was in pain because he was constipated because he had quite a bit of stool on the X-ray and he hadn't pooped for a couple days. So we starting giving him more Miralax. After a whole day and no action we decided to give him Magnesium Citrate, which he threw up right away, and GoLytely. Within a couple hours he was getting cleaned out very quickly, we had to change his bed twice! He was still very uncomfortable and had a slight fever but there was no reason to keep him and his blood tests all came back normal so we went home. He had been given oxycdone which seemed to be the only thing to help him but it is constipating (along with the chemo meds) so they told us to try and use it 'sparingly'! We told them we would try but when we got home he was pretty much on a schedule getting the pain meds, every four hours. If he was almost due for the pain medicine he would definitely let us know, it was heart-wrenching. You just feel so helpless watching this sweet boy in so much pain. He was sleeping a lot more because the pain medicine pretty much knocked him out, which at this point was the best thing for him if he was going to be in pain all the time.

He seems to slowly be doing better. He is still on the pain medicine but not as often. He is still grinding his teeth but he is not crying out as much. He doctor said that sometimes one of the chemo meds can cause jaw pain and it's possible that is why he is grinding his teeth but there is not much we can do besides give him the pain medicine. He also screams out when I am changing his shirt, like he is in agony. We think he might have peripheral neuropathy as well, which can cause intense pain, numbness and sensitivity to cold in extremities. But the pain meds seem to help that as well. I just hope the pain doesn't get worse again after this next does of chemo, which is all three drugs again.

Please keep praying for this sweet precious boy. And thank you for thinking of us and praying for us and for the comments, they are very appreciated.

Nick is actually smiling under the mask, he thinks they are pretty funny!

The beginning of a long road....

We got home from the hospital on Friday. Nick started chemo on Thursday after they put in a central line on Wednesday.
They did not do a biopsy on the tumors because this type of cancer seeds very easily. Meaning if they went in to just remove a small piece it would be very likely to spread. Instead they do chemotherapy for 6 weeks and if the tumors shrink significantly they are assured that it is Wilms tumors with favorable histology and they will remove as much tumor at that point that they can, and continue with chemo for 13 more weeks. If If they do not shrink, or only shrink a small amount, they would at that point go and remove a piece for biopsy. Either way he will continue with the chemotherapy for at least 19 weeks, longer if it doesn't react the way we need it to.

The left tumor is quite large, a little bigger than a grapefruit and the right one is much smaller but starting to grow quickly as well. The left tumor (on the right in the picture) is the semi-round object that is pushing everything around (the dotted line is going through it at the top). Hope that makes sense...it's the largest object in the picture. Yeah, pretty scary.

We have to go to the clinic weekly to get the chemo. Each week he will either get 1 or 3 different chemo drugs. Two of them will lower his blood counts and when his platelet and neutrophil counts are the lowest is when we have to be extremely careful that he is not around anyone that is sick. They tell us to not live in a bubble but honestly, that is kind of what we are going to have to do. I cannot imagine Nick getting sick going through all of this. It's the last thing he needs. We are sterilizing and washing things like crazy. Especially the other kids hands, those are probably the worst sometimes.

Nick is having a very hard time with nausea. He is on Zofran but that doesn't help much. are being very careful with what we feed him as everything needs to be as clean and sterile as possible. He is still on some formula with his diet and for whatever reason Children's Mercy does not 'believe' in the blended diet. They would rather a child live off of a synthetic version of food. That makes staying in the hospital even harder, they only give him formula, none of his regular diet which normally includes fresh fruits and veggies and oatmeal or rice cereal. But now that we are home we will work closely with his dietician from Infant Toddler and work on something that he can handle. And who wants milk when they don't feel good? They usually say to stay away from dairy products during chemo but that's all they want Nick to have?? Craziness.  I have been giving him some expressed breast milk though. With all the amazing things breast milk has in it and I am sure it will help with his immune system.

Finding these tumors was a huge surprise. We went to see a KU GI doctor on Friday morning and he felt a mass in his stomach, he thought it could be his spleen. He wanted us to get an ultrasound right away but we were actually already scheduled for an annual ultrasound on Nick's kidney's later that afternoon at Children's. So he gave us orders for that area of his stomach hoping to have them add it on while doing the kidney ultrasound. While doing the ultrasound the technician called the radiologist down to look at the scanning. He seemed very concerned but didn't tell us anything at this point. We were asked to go back to the waiting room while the doctor tried to get ahold of Nick's nephrologist. They finally came out into the waiting room and told us that Nick needed to be admitted and they were going to get a consult from hem-onc (hematology/oncology). They were concerned about the masses he had on both his kidney's but they weren't telling us much else than that. When I heard those words, 'hem-onc', my heart started to fall apart. 'This can't be happening. It can't be cancer, they are probably just the cysts that Nick has always had on his kidney's, they have to be wrong, Nick doesn't deserve this...why Lord?' My dad later reminded me that God is in control, He has Nick in His hands, nothing happens that He doesn't allow. Because my mind and heart had lost it's faith in the last couple of hours somehow. But my dad helped me realize, everything will be OK, God did not forget about Nick.

The crazy thing is, we had just seen Nick's nephrologist a month before and he either didn't feel the masses or missed them AND we had just seen his pediatrician the week prior and he missed them too! My faith in doctors is steadily going down. It was easy to be upset at first, how had these doctors missed something so obvious? Joe was infuriated. (I am just glad that when his nephrologist, who had been out of the country in India, stopped by the room that Joe was in the shower and there wasn't a confrontation!) But I felt that the Holy Spirt was telling me that this was God's timing. God did not want us to know the month before because it was 1 week before Carsen would be born. He didn't want us to be going through this before Carsen got here, so we could enjoy our time with our new baby and not be worrying about everything. God's hand is over the situation, but it's very easy to forget that.

Thank you all for your prayers and kind words. Each one is truly appreciated. We are so blessed to have so much comfort and support. I will continue to update as I have time. Please pray that Nick can get comfortable and that these chemotherapy drugs' side effects don't last long, he is having a rough time.

A happy picture-taken in February.

We need lots of prayers...

I don't have much time to post but I wanted to let everyone know that we found out on Friday through a routine kidney ultrasound that Nick has two large tumors on both his kidney's. The left is significantly larger, about the size of an orange. They believe he has Wilms' tumors. They are malignant. He will be admitted on Monday and will have a CT to find out if its spread. Then they are wanting to do chemo right away. Nick is in some pain as well, we think the mass is so large on his left side that it's causing pain in certain positions. He really likes to be laying flat and he has been sleeping a lot lately.
Please pray for us during this very difficult time.

Nick is a big brother!!

On Friday, February 24th 2012, at 9:41 a.m. we welcomed Carsen Jax Taylor Ketcham into the world!  He already has a few nicknames, including CJ and C Jax!
He is perfectly healthy and looks a lot like his older brothers. He weighed 8 lbs 2.8 oz and is 19 inches long. He is a breastfeeding champ even though he was down to 7 lbs 4 oz when we left the hospital on Monday.
Nick doesn't really like his cry, it is rather loud and ear piercing though!

We are trying to adjust to having a new little one around. Its not easy but with the help of our nurse and friend Maya, and the help of our family and friends its been a much easier transition than we expected...at least so far!
We are very blessed and praise the Lord that he is healthy and so far has no medical issues!

Long needed long post....about me

So I have been meaning to post about a few topics for awhile but it seems to always be the last thing on my list. But here it goes...
So I often get comments from people, usually family, friends or nurses, about how my hands are so full and 'wow, you handle so much!' I usually just laugh it off and just reply 'oh yes, I know.' But during the Christmas holiday I was able to sit down and speak to a few family members and discern that I really do handle a lot and what I do for my family is no small feat. (Thanks Grandpa!)

I am not bragging at all, trust me. But I just wanted to be able to write down how I am able to handle so many things and still be sane.  But first let me give you all a glimpse into my daily life and bear with me, this is long but I want to try and include lots of information for my own purposes!

So we have three, soon to be four, children.

Brianna is 6 and in 1st grade, she is the sweetest girl but can be dramatic sometimes, just like any girl! But she's my only girl and I love her to pieces. She is in 1st grade and has been in speech for a few years (but just got dismissed, yay!) and has had some trouble with reading and math-really no big deal. But it can be hard to find time to work with her and sit down and read the library books she brings home. I think I have the hardest time with that, not being able to give Brianna more time and I feel like I'm failing her in some areas. Plus there's always Brianna's 'other' family. Brianna is not Joe's biological child, even though he has helped raise her since she was 1. Her grandparents love to buy her things and take her places, but it's difficult because her father, Josh, has never really been in her life. His parents have always pushed for him to be but he just doesn't care. Recently though, he got married and had another child and it seems like his parents are again pushing for him to be around more. So they take Brianna on outings and usually Josh, his wife and son, are wherever they plan on going. It's frustrating not knowing if I'm making the right choices for Brianna regarding this situation. I know they are her family as well but it's hard not to see what they are doing as manipulative for both her and I.

Benjamin is 3 and is in preschool two half days a week. Most of my family and close friends already know this but Benjamin can be a rather difficult child. He is a very rambunctious, full of little boy energy and many times he just doesn't know where to draw the line. Many people may say 'oh, he's just being a little boy' and to a point that is true but Ben doesn't usually ever stop. Meaning, he's like the energizer bunny, without an off switch. I love my Ben very much but most of the time he is more work than Nikolas! And Ben is a little cutie and always says the funniest things, which makes putting him in time out even harder!

And of course, Nikolas, our sweet, laid back 17 month old. The one person who can take my frown away without doing or saying anything. Nick himself is really not hard to take care of. But he cannot sit up, walk or crawl, so he can't get into anything. But Nick always has seems to have a doctor appointment or a therapy class. We go to a wonderful place called the Lee Ann Britain Infant Development Center. Here, Nick goes to different therapies twice a week. Monday's we go for about an hour for speech/feeding therapy and occupational and physical therapies, then on Thursday's we go to what is called a baby class. There are about 7 other babies that are the same age as Nick, who get group therapy together. We do every type of therapy from feeding to aquatics to music. Its quite fun and I really enjoy seeing the other babies and how they are developing. Usually once a week we also have therapists come to our home through a state program called Infant Toddler Services. We have an OT and a vision specialist come out to work with Nick relating to almost every aspect of his daily life. They are always helping me figure out solutions to situations for Nick regarding sitting, sleeping, bathing, everything really! And once a month a nutritionist comes out with them to work on Nick's blended diet we have been doing for awhile. During the day I try to do different therapies with Nick, but lately with my giant belly it has been pretty hard and that does tend to ruffle my feathers, so to speak. I hate when Nick is just laying in one of his seats, or on his boppy pillow just with his pacifier and no one is interacting with him. Since he is not able to do much himself, mainly due to muscle tone and coordination issues, many times he will lay there and wait for someone to come play with him.
I hate it.
I hate that I cannot give him every second of my time. My heart breaks because I know he just wants to play or have someone interacting with him in any way. The most he can do by himself is roll around on the floor some and if you place a toy in his hand he might wave it around until he drops it but then its done, he can't pick it back up by himself. And he doesn't cry for someone to play with him, he doesn't even cry when he's hungry. He only cries if he's in pain or he might fuss a little if he's had too much stimulation or therapy. Nick does not have a lot of endurance to do much of anything but when he is awake and wanting to play I try so hard to make sure he doing something but many times I cannot play with him.
I do not think that Joe has the same mind frame when it comes to Nick. He doesn't see Nick as needing constant attention when he's awake. Joe helps a lot with Benjamin and Nick sometimes as well but many times it's Joe that will give him his pacifier and leave him there. I don't mean to make Joe sound like a bad father, he's not. I just wish he would put a lot more time and effort into helping with Nick and playing with him without me asking. Nick's care usually falls onto me, which I really prefer anyways but being 9 months pregnant and extremely tired is really starting to take it's toll on me. I admit that I sometimes do have anxiety about how I'm going to handle a newborn with everything else.
BUT recently Nick got approved for the TA (technology assistance) waiver. Basically it pays for a nurse or care person to come into your home for X hours a week. We were blessed enough to be approved for more than 40 hours a week of care. And our wonderful friend, Maya, is going to be one of the nurses that will come and help us with Nick! This is truly an answer to prayers!

Our fourth little one, Carsen, is scheduled to be born in 3 weeks! I cannot wait to meet him and add him to our wonderful family. I have had a relatively easy pregnancy so far, except I am starting to get the normal aches and pains from the last weeks weeks of pregnancy and it seems my energy level is slowly being depleted day by day. Lets just say I cannot wait to be done being pregnant!

I also am working towards my RN, ASN. I have taken all of my prerequisites except for two, Physiology and Microbiology. I am currently taking Physiology, the other I plan on taking this summer. This semester I am only taking online classes which really helps but it can be hard to plan time to make sure I don't fall behind. I am also taking a parenting class.



Okay, sorry, that wasn't supposed to be so long but I guess it is a pretty good insight into my life.

Back to juggling a handful, the first and main reason that I can handle such a full plate is that I do not do one thing by myself. God is with me every step of the way. I would not and could not do anything without His hand upon my shoulder.

I recently read a quote that I just loved-

The second reason I am able to handle a lot is I have an amazing support system of family and friends and fellow bloggers, nurses, therapists and a few doctors that make my life much easier. Our family is so blessed by almost everyone we come into contact with, even if they don't know it. I am usually able to take away something positive or helpful from every person we come in contact with. That's mainly my personality type as well though, I am a very optimistic person. My glass is always half full. God also made me a lot like my mom, with a lot of patience!

The third reason is that I don't dwell on everything I have to do. I don't stress over every little thing, even though sometimes it might seem an impossible task or chore. I just do what I have to do because I know this is the job that God has given me. God doesn't plan on me failing and neither do I. 

Love these verses:

Lastly, I am always reminding myself how blessed I am. My life is blessed in every way possible and by thanking God on a continual basis I am able to reflect on everything He has done for us and is doing for us. I know that God wants us to bring everything to Him, by praying. But after praying for something I don't continually ask and keep praying for it, I just continually thank Him for giving an answer to that prayer. Because He does have an answer and it is coming. By teaching myself to pray like this it has really helped  build my faith and remind me of my blessings. I also remind myself there are many families going through similar situations and their lives are no easier than mine, some families have much tougher situations than ours as well. I follow a few blogs and I truly admire all of the parents I read about and I get a lot of inspiration from them!

 Every tiny step that Nick accomplishes is huge to me, and I praise God each time. 

Well thanks for reading, if you've read this far! God Bless!