Wednesday, February 23, 2011

Fake Laughing

Keegan has started fake laughing to get other people to laugh a/with him. Here is a video from Monday night that shows Ry and Kee laughing. Be prepared its a funny one!

Wordless Wednesday

Monday, February 21, 2011

Rubber Ducky You're the One.....

We had our first REAL bath Saturday night that involved more than 1/2 an inch of water. On Thursday February 17th we had our central line removed. For MONTHS the central line provided the port to which chemo was given, blood was taken, blood was given and food supplement was supplied. In a 5 minute surgery in the early morning hours of the 17th a general surgeon removed that life line and closed him up with some glue!

The central line kept us from a real bath since last May! It's the little things like bath and bath time that you miss and never knew what a big impact it would have on every day life!

So no further adue.....

Here is a short video:

Untitled from Keegansmommy09 on Vimeo.

Wednesday, February 16, 2011

Really? I mean Seriously?

I guess I have learned my lesson. Nothing ever happens in the Chupp household that is ordinary or simple. Yea I am talking about the fall from the couch the other day. Why can't a fall just be a fall? Why couldn't Hydrocephalus just be that and not the brain tumor component?

Anyway.....enough sob story, after a teary and often whimpery evening yesterday, and an even worse bedtime; I thought it was best to call his Pedi's office this morning and let them know that no bruises had come to fruition and that he was still hurting pretty bad. Mary talked to Dr. C who worked us in the "back way." Mary had me call when I got there with jammied up Keegan and we were escorted up backstairs into his office.

They saw me pretty quickly and sent us down a "back way" so as not to congregate with the general public to X-ray. They x-ray his little clavicle, they area under suspicion. The X-ray tech showed me the x-ray after we were done-a nice little broken clavicle, right in half!

I was then whisked upstairs where Dr. C told us to give him pain meds as needed but they pretty much heal on their own. They did supply me with two ace bandages so I can immobilize it and keep him comfortable.

I just thought I would update everyone! Of coarse we don't do anything normal in the Chupp house!

Wordless Wednesday

I Mustache you a question.......

Tuesday, February 15, 2011


Somedays I think my life isn't so bad.
Somedays I think I can do this.
Somedays I think that having a specials needs child is not as hard as it may seem.
Somedays I think my son is "normal."


There are days I think my life is bad.
There are days I think I can't do this.
There are days I think that having a specials needs child is harder than I ever imagined.
There are days I know my son is not "normal."


Yesterday. It started like a normal day and ended up like anything but. It was valentines day-whoopie! I don't get into it personally but I won't get on that soap box right now. Kee and I were hanging out. I was communicating back and forth with my good friend Laura about our insurance coverages, raising some limits and what not. We had a decent morning. Kee played on the floor, we ate breakfast and he took a morning nap. Around 12:30, after Ry left to go back to work and my mom was getting ready to head back as well, that all changed.

Mom placed Keegan sitting next to me on the couch. I turned my back to respond to an email Laura had just written me and before I know it I turn to my right to watch in slow motion as Keegan's head comes in contact with the floor and his body flops over in a somersault type of way. He immediately started screaming and I rushed over to pick him up to console him.

I went and got mom who was out front and assessed him, he seemed to be okay. He happened to land on the shunt side of his head so of coarse that is what I worried about the most. A short time later our PT showed up, he cooperated with most of the activity once I got him calmed down with a bottle of juice.

It wasn't until after his afternoon nap that I noticed he seemed to be favoring his left arm/hand. He has always been more of a lefty so I just kept watching it. He showed no neurological impairment signs. So I didn't start thinking about it till around 5 pm when everyone was due to be home. I point this out to my mom, who is a nurse, and my husband. They thought it was just soreness from the fall. I convinced myself otherwise and decided I need to run.

I got on the treadmill and pounded out 2.55  miles and headed back upstairs. He was a little cranky but had just eaten. He is cutting his molars as well. He continued to favor his left arm/hand and when we put him down was still tender on the right side.

I had a hard time falling asleep. I worried that there was something more to what was going on but eventually drifted off to the sound of him snoring (he sleeps in our room in his crib).  Around 1:30 he woke up kinda whimpering. I gave him a bottle with Tylenol in it, he cried for a while after I picked him up because he was uncomfortable. I sang to him and kinda did a little neuro check of my own. I put him back in his crib and he fell asleep while I stayed up and worried. I counted down the hours till I could call his pediatricians office and see what they thought was best.

He woke up around 6 am this morning, whimpering in pain. I got him up and cuddled with him in the living room. He takes awhile to actually wake up. I noticed when I picked him up he was still tender and when I put him down on the couch he still favored his left hand.

At 8 am I called the pedi and talked with mary his nurse. She took the message and I think she thought along the same line as me, just kinda bruised and battered but would be okay. She passed the message along to Dr. C and returned my call around 9:30 and told me to just watch him. If he was still having pain in a day or two we could talk about x-rays but because he is on lock down from the transplant, they know I am hesitant to get him out in public.

I don't know if I would worry any less if he wasn't a special baby. I don't know if I would worry any less if someone reassured me its just bruising. I am a worry wart by nature but why does everything have to happen to his head!

In my heart I do think its just some major soreness going on but lord I would take it in a heart beat if he could just be normal again really soon, I hate it when he hurts!

Somedays I know are going to be easier than others, yesterday was not that day!

Wednesday, February 9, 2011

Some more Special Pictures....

This is the whole picture of the some of the Crew at IDS in Arizona!

Some of the Ladies at Central Childcare!

Uncle Bret dressed in his green!

Haleigh & Alexis supporting the cause!

Josh whose wife Tabitha just got done with her chemo for colon cancer!


A Very Long Day

Yesterday was the big day. It was our 8 week follow up from the last MRI and the longest he has ever gone without chemo since this whole ordeal began. We started the day bright and early with breakfast at the hospital (for mommy, daddy and grandma only). Keegan was NPO after midnight but had a bolus of pear juice given around 7 am as it was a clear liquid and okay to give.

We had an ultrasound of his abdomen at 9:30 and the MRI shortly to follow at 10. We progressed from one to the other with no problems. The anthesilogists were right on time and actually a little ahead of schedule and took him back around 10:45 he was gone for about 2 hours and 15 minutes. He was sedated with propofal and had a hard time waking up this past time. But after about an hour of crying with his eyes closed, an 8 oz bottle and some daddy time, he woke up ready to go.

We then headed up to clinic. I was getting more and more nervous. Sally Dr. Shih's nurse came in and so did another Oncology nurse who asked if he could be a part of an iron study-which is pretty irrelevant now but Sally drew 8 vials of blood and then we were left to wait for Dr. Shih. We waited, and we waited and we waited some more. On top of that we waited and waited and waited, about 30-45 minutes after Sally had been in Dr. Shih came in. I was holding my breath and basically about to pass out.

Dr. Shih said its good news. I immediately asked if I could hug him and when he said it was okay I embraced him in a HUGE hug! I was oh so happy and then he went on to explain what they saw. The tumor bed lit up a little brighter than normal but after looking at the profusion scan (blood to the brain) and some other vantage points they figured out, and are 99.9% positive the brightness was just the timing of the MRI and the contrast that was injected. He went on to tell us that the area in his spine and the sugar coating at the base of his spine are smaller and significantly more dull than the previous MRI's.

We discussed what was next. Someone from surgery should be calling us within a couple of days to discuss the surgery to remove his central line (YEA!!!!), this is what keeps us from giving him a "normal" bath. We discussed the next MRI in May, I am already dreading it, and we also talked about medicines.

Dr. Shih took Kee off his Fluconozole (which he has been on since May '10), Acyclovir, and Pepcid. We are on 1 med during the week twice a day (Keppra) and add Septra on the weekends till we see how his 100 day post transplant blood looks! I have already gotten to clean out his med cabinet a little!!

So all in all the day was a success! We had many many many great friends, family and strangers supporting us in both prayer and wearing green: The following pics are just some of the ones from Keegan's facebook page I have gathered to show you just how many people love this kid!!!

We felt the love!

We felt the love!

We felt the love!!

Thank you to everyone for your thoughts, prayers, and time to wear green and take pictures! We love you all each and everyone! Keegan sure is a special kiddo with lots and lots of people on his side! I can't wait until he gets older and I can show him how much people care!

Until next time, I will leave you with a quote from our wonderful nurse Sally "Our greatest love does not give fear"

Wordless Wednesday

Because we are down from 4-5 meds at a given time to 1-2!!!!

Sunday, February 6, 2011

Houston, We have an Update.....

Thank you, Thank you, Thank you for the many words of encouragement and advice. Last night we tried keep a instrument only lullaby CD on all night. After Kee got over the initial shock of going to bed, which sometimes can be a fight all its own! He was just WAY overtired, we kept the CD on and while he did whine once or twice in the night neither Ryan or I got up and he fell back asleep within a few minutes.

Now, this has only been a one time occurrence so far so I am not putting all my eggs in the proverbially basket BUT I do have hopes that this might just work. When I think about it, it really does make sense. Keegan is used to the hospital and all the noises throughout the night....why I kept thinking it was the light thing was beside me. Maybe all along it has been because its been just too quite!

Thanks again for all your support! Hopefully the week to come will be better and he will get the good nights sleep he needs!

Also, if I could ask all my praying friends out there to start praying that would be excellent. Our 8 week follow up MRI is Tuesday and this momma is WAY nervous! This is the longest he has been without chemo since this whole ordeal started and I am freaking out. We are also asking everyone who wants to to wear green. You can even post a picture of yourself wearing your green gear to Karing for Keegan on FB. I will be checking periodically since our day is going to be soooooo long. (I have mentioned this in a previous post so no its not deja voo :) )

Thanks Guys~God Bless!

Friday, February 4, 2011

Houston We have a Problem....

Don't worry this post is about nothing major; Well I guess it could be major but in the grand scheme of things I think it can be worked out. This is why I am posting this. I need some mommy advice on what could be going on and how to correct it.

Keegan began sleeping through the night at 2 months of age (I know right, we were totally blessed!) but now is a completely different story. Since this whole cancer thing and being in and out of the hospital and whatnot, he is not sleeping through the night. In fact, we are lucky if he only wakes us up once. Now I know this is "common" that most kids don't sleep through the night for a long time but ALOT do.

I guess it's not just the waking up that concerns me, heck I am now a stay at home mom and can take naps with him when I want, which is usually never because I can think of  a TON of stuff I need to be doing. What concerns me is the way he wakes up. He wakes up crying and/or screaming every.single.time.

First we thought it was because of the difference in his hospital rooms vs home, but that didn't make much sense since he was in the NICU for 2 weeks after birth and then began to sleep through the night. Then we thought it was a light issue (we keep our bedroom VERY dark, black curtains and dark walls). We have tried a couple of nightlights at a time and he also has a turtle that projects the constellations on the ceiling. He was still waking up 1-2 times a night screaming. Last night we tried one of those clip on lamps for reading in bed, we put the dimmest bulb we had in the house in the lamp, 15 watt, and tried that out.....still woke up twice!

I might add that he gets a 8 oz bottle of Nutren Jr. (his primary source of nutrition right now) before bed. He usually wakes up at 1 am and I give him 6 oz after all other soothing techniques fail, but I really don't think he can be that hungry-can he?

I am at a loss, I have thought about asking our Doctors for sleep study to see if he is experiencing Sleep Apnea. I am willing to try whatever to find a solution. My good friend over at Loving Logan just found out her son was having sleep problems because he had asthma-that's a thought also I guess.....

Does anyone have any suggestions, comments, or words of advice? It's not so much that I NEED a full nights sleep as it is he is not getting the benefit of a full nights rest.......

Wednesday, February 2, 2011