OT Eval & Clinic Today

Caleb did fabulous for his OT Eval today! He chose to cooperate with everything we were doing. The therapist will be writing up her evaluation & submitting it to the insurance company tomorrow. They are looking at 8 visits per month for OT so far. We have the PT eval on March 1st & the Speech eval on March 2nd.

Clinic went smoothly today as well. He had his sutures removed with very little fuss. No bloodwork today!  We also met with Dr. Leger & a psychologist to discuss how we're all handling things.

Since Caleb made such good choices, he got to enjoy over an hour of Wii time with Daddy. They played Super Mario Galaxy 2 together. Caleb was "the star" & helped Daddy by gathering coins & getting the bad guys before they could get Daddy.

We're looking forward to G-ma & Pawpaw coming up this weekend to watch the boys & give us a break. Caleb will be sleeping in his bed overnight for the first time in almost 2 months. We're working on transitioning him back to his bed. We started with naps & are moving to Friday & Saturday night. Hopefully soon we'll have him back in his room every night. It's a slow process because he says he's afraid to be alone. I can't really blame him for that at all, but it's just not feasible for him to stay in our bed. Caden doesn't understand why "Bubba" gets to sleep with us & he can't. He keeps trying to get me to lay down in his toddler bed with him.

We have some friends coming over tomorrow evening to watch the boys while Richard & I go out (before G-ma gets here). Please pray that both boys cooperate with Richard & Christine.

The Team Caleb attire seems to be a hit. Thanks so much to everyone who has made a purchase. We appreciate your support more than we can express.

Angel

Home OT Evaluation Today!! Finally!

I am so excited. The OT specialist is supposed to be here at 10am today to do Caleb's evaluation so we can start his home OT therapy. This has been so long in coming.  Our initial OT eval was done in December, but then we never got any appointments scheduled due to staffing issues. I can't wait for this to take place.

Please pray that Caleb cooperates. He's already told me this morning that he's not going to cooperate with anything she wants him to do. So, I've told him what his consequences will be. No cooperation = no TV or Wii. I sure hope he makes a good choice. His dad wants to spend some time playing Wii with him.

Thanks for your continued prayers everyone!

Team Caleb Apparel Now Available!!

Our friend, Nisha has set up an online store with Team Caleb Apparel in it to help raise money to defray medical expenses.  A portion of all sales comes directly to us.  Order your Team Caleb gear now at:  

http://teamcaleb.propellshops.com


Available items include t-shirts, long sleeve shirts, hoodies, sweatshirts, tote bags, coffee mugs & water bottles!

2 Days Vomiting = Trip to ER

As I mentioned in the last post, Caleb was vomiting yesterday. Couldn't keep breakfast or lunch down & didn't attempt dinner at all. This morning, he woke up & said he wasn't really feeling very nauseous so we went ahead & fed him breakfast. Within 30 minutes, it came back up. So a call to clinic was in order. They told us to take him to the ER so we could have a CT scan done. They thought that maybe his VP shunt was blocked somewhere along the line.

While waiting for the CT & x-ray results, they accessed his port & hooked him up to some fluids to keep him from dehydrating since he hadn't had much to eat or drink in 2 days that he kept down. He was hungry, but they wouldn't let us feed him until we knew what we were dealing with and the neurosurgeon gave the okay.

The CT scan & x-rays showed the line looked great. CT also showed that the ventricles were much smaller than in January, which means the shunt is doing it's job. They also noticed some fluid in the cyst that they wanted to see if they could drain.  They managed to drain 12 mL of fluid from the cyst with no problem. Within minutes, Caleb said his head was feeling better.  So, the last test before release was to see if he could keep some food down, & they let us feed him. He kept down all the snacks we fed him as well as the 8 oz of drink & we got released!!

He's also lost another 5 lbs!!! He's down to 60 lbs from 68!!

Clinic Visit & Swallow Study Results

Caleb's larger wheelchair & the bedside potty were delivered Monday. This is making it much easier for me to get him to/from the potty. He didn't like it at first, but is now okay with it.

Caleb's video swallow study was moved from Friday to earlier in the week. We went in on Tuesday mid-day to have it done. I brought in several foods and some liquids as requested.  Caleb was showing difficulty most often with swallowing liquids, but also showed signs of swallowing solids as well.  In a healthy person, when food reaches the back of the tongue, it receives a signal to swallow (Figure 1, left side, below). Caleb doesn't seem to get that signal until the food or drink is already in his throat near the opening of his larynx (Figure 2, left side, below). When he's drinking thin liquids (water, milk, juice, soda, etc.), there is an increased chance of the liquid going into his lungs (aspiration) due to the weakness on his right side.

Figure 1

Figure 2

The difficulty swallowing solids is more that he's not able to totally clear his mouth of food. So, we have been instructed to thicken his liquids to about the consistency of a protein shake or a V8. We were specifically told not to use Thick It because it continues to thicken even after mixed, can change the taste of the liquid and leave a gritty taste behind.  We were given some samples of Simply Thick  to use instead. Caleb likes it fine. Since we've started using it, he's not having as much trouble with his liquids.

Several times this week, Caleb has awakened with nausea and a headache. We've been able to treat the headache with one dose of Tylenol. He gets 2mg Zofran for the nausea.  We discussed this at clinic on Thursday and think it is because he has been sleeping flatter than he has in a while.  Dr. Leger still felt confident enough to reduce the steroid again. We are now at 0.5 mg every other day!  Caleb also lost 3 pounds this week!!!!!

We did have a rough day today. Caleb woke up with a headache at 4:30 a.m. We gave him some Tylenol & he went back to sleep. We got up about 7:15 and he was quite nauseous. He got his Zofran then. We waited about 30 minutes before attempting to eat anything. However, he was not able to keep it down.  He said his head was hurting as well, but I couldn't give him another dose of Tylenol until 8:30. So by the time 8:30 came around, he was hurting pretty bad. I gave him the Lortab at that point.  While I was out running errands, Richard took care of the boys. He fed them lunch and Caleb was not able to keep his lunch down either.  He didn't even want to attempt dinner tonight. Fortunately, he's still drinking plenty. If he's not able to keep breakfast down in the morning, we'll have to call the clinic.

Good news items:

1. We've gotten approval for home health PT, OT & Speech. Company found, just waiting on call from therapist to set up appointment.
2. Several times this week, Caleb ASKED to play with Caden or other friends.
3. His friend, Stacy, came over on Wednesday and he played for a couple hours with her while I went grocery shopping. (Thanks, Dawn!)
4. He's laughing again!!!!
5. He's talking more & raging less.
6. He is singing again.  Caleb always loved to sing.

Team Caleb t-shirts coming soon!!! Thanks again to Staci Salazar for designing this.

Also, more information coming soon about a Team Caleb Fun Walk fundraiser being organized by Richard's coworkers.  

Clinic Visit & MRI Results

Yesterday was our clinic visit. We brought Caden with us to the visit as well. We felt it was time to have Caden meet with the Child Life Specialist to discuss how he's adjusting to all the changes.  Based on our conversation with her, he's actually really doing very well. She said that one thing that may help a little more is to do some "medical play" with them. So she gave us two play kits full of medical stuff for them to play with.

We then talked to the doctors about the MRI results.  The blood in the tumor seems to be reabsorbing into his body fine. There is some fluid that they may try to drain from the cyst at a later point, but neither neurosurgery nor oncology seems concerned about draining at this point. Dr. Bowers said he was "relieved" that the tumor appears stable and the cyst appears slightly smaller. With the current & new symptoms Caleb's having, Dr. Bowers was concerned that the tumor may have started growing again.  However, that does not seem to be the case.  He believes that the symptoms Caleb's having (with the possible exception of the difficulty swallowing) are due to the steroids.  We decreased the steroids again. We are now at 0.5 mL once per day!!

Dr. Bowers is concerned about the swallowing issue, so he's ordered a video swallow test for Friday, February 18th at 7:30 a.m.  I have to bring some food he's having trouble swallowing as well as about 6 oz of liquid he's having trouble with.

We went over Caleb's issue with his "stomach incision." It appears to be more of an issue with him not being able to defecate than anything else. Since he's having trouble swallowing liquids, he's hesitant to drink a lot because it keep going down the wrong way. This is not helping with the "movement" issue & it just keeps compounding itself. So, we've been instructed to dose him well with Colase, Miralax & Senna to get things moving along & keep doing so until he has several really good movements.  If we're still having problems with it over the weekend, he may have to admitted overnight and have a tube inserted (via his nose) to flush his system out. Dr. Bowers says, "It's not pleasant at all, but it works."  We're still trying to convince Caleb he really does not want that option even though it does mean getting admitted.

In other news...
We are in the process of getting home health set up for Caleb's PT, OT & Speech Therapy. We're also having his wheelchair "upgraded" to a slightly larger size. Only downside of that is that our bathroom doors are "barely" wide enough for the chair he has now. It scrapes the door & frame as we go through. The new chair will definitely NOT fit, but will be more comfortable & taller. The DME (durable medical equipment) company asked if we'd considered using a 3-in-1 potty chair instead. We could use it bedside if needed so we wouldn't have to worry about trying to fit the wheelchair into the bathroom. Sounded great to me so we ordered one. It's being delivered today.

When I logged on Facebook this morning, I saw a wonderful surprise from my friend, Staci. She created an awesome sign called "Team Caleb" for us. Of course, I immediately changed my profile pic to it.  Here it is:

Thanks to all of you who are a part of "Team Caleb" for all you do.

MRI Anyone?

First, Caleb got his wheelchair last night. We finally have something with wheels that will fit through our bathroom door -- it's snug, but it fits! That will make it much easier to get him around inside the house. It's not as bulky as the 3-wheeler (at least not when the leg rests are removed). We were very glad to have it this morning when we had to leave to head downtown.  Caleb asks "can I still ride in my 3 wheeler"?

Another MRI today. Caleb's still having difficulty with pain, blurry vision, severe weakness on right side, diminishing strength on left side, inability to walk, wobbly head (like an infant that can't hold it's head up yet).  Docs want to see if they can tell what may be causing it:  cyst, tumor, hydrocephalus, swelling due to reduction in steroids, or other.

So, we trekked out of the house this morning in 18 degree weather with a wind chill near 0.  Roads are icy, lots of spinning going on. Saw 2 wrecks within 20 feet of each other while dropping Caden off at a friend's house (thanks Carolyn!).  We left earlier than normal to anticipate slower driving conditions & got to the hospital an hour earlier than anticipated. Fortunately, they had several people cancel so we didn't have to wait very long for Caleb to be called back to get ready.  Unfortunately, that's where the problems began.

Right after we got into the prep/recovery area, a NICU patient came down for an immediate MRI. So, that threw us off schedule by 1.5 hours. Then, while we were waiting, Caleb tried to scratch his head near an incision line. He managed to tear open the sutures and his head started bleeding.  We had to call neurosurgery to come down & see if it needed more sutures. While waiting for them, they attempted unsuccessfully to access his port. They could get it to flush okay, but couldn't get blood return. The anesthesiologist decided to use general anesthesia to get him under then access the port while he was out. We called a nurse from oncology to come over to access the port. So, this little MRI room that normally has maybe 2 people in it had 3 anesthesiologists, 2 nurses from radiology, 1 oncology nurse & Daddy in with him while I stood in the doorway & watched.

Once they got him under, Rachel (oncology nurse) access his port. She had the same problem as the radiology nurses -- able to flush, but no blood return. So, they couldn't use his port to do the contrast. (We'll have to access it again in clinic tomorrow and have some medicine injected to help break up whatever is causing the problem in the port.) They had to insert an I.V. instead.  He did fine with the imaging itself. Once the MRI was completed, neurosurgery restitched his head with stitches that will have to be removed in two weeks.

After the sutures were inserted, he was brought to recovery. That's when we discovered they forgot to put some "special MRI pants" in case he relaxed too much during the MRI -- he did. Good thing we brought a change of clothes with us.  He's finally waking up well. He's already had an apple juice & a popsicle & is about to suck down some jello.  If all goes well, we should be leaving within an hour.

Once we leave here, we're supposed to go take him for a cheeseburger.

Praise God for the Small Things

Well, I've been working with Caleb all week with his therapy as I've been home most of the week from the ice and snow we had.

Caleb was able to hold on to a small squeezable ball today and lift it in the air with his right hand.

Also as one of Caleb's therapy exercises, I have him pick up a domino and put it in is right hand. Then lift it up and move it over to a basket were he has to drop it in the basket. Caleb does this 10 times. Today after 6 he asked if he can be done. I responded if he would pick one up with his right hand and drop it into the box, then yes he can be done.

WELL HE DID IT!!!!!

We were so excited to see the improving strength in his right hand.

-Richard Huffines
A.K.A. Daddy

Weather hampers progress

Today, we were supposed to go to physical therapy (PT). This would have been our first PT appointment of the year because of all the hospitalization time. I was really looking forward to getting some input from Phoebe on how we can best help Caleb get around easier.  He's still not able to walk without support from someone else, has no balance to speak of, and tilts to one side when attempting to walk. He says it is painful to walk at all. We were told that is because his achilles tendon is tightening up due to lack of use.

We've been up every hour through the night trying to help him get comfortable to no avail. (This seems like a daily routine as well.) So when we finally did get up and looked outside, the driveway, roads, yards, etc were covered in ICE & snow, more ice than snow.  We've had to cancel our PT appointment for today as it is too dangerous for me to get the van out of the garage. Our driveway is on an angle & I'd have to go "just right" to keep from hitting the neighbor's vehicle across the street as I back out. I'm not even going to attempt it.

So, I've talked to Phoebe by phone to get some help on how to get him around. We're looking at the possibility of a harness-type device that would loop under his arms and we hold it behind him to help him walk. There's also been discussion of an "assisted walker" which would also have a harness & a chair so if he loses his balance he doesn't fall to the ground. Our third possibility is getting a wheelchair to get him around. He's just too heavy for me to carry at all & Richard can't be here all the time to carry him. Of course, Richard shouldn't really be carrying Caleb around either.

He says he is still having some incision pain in his head & stomach, but is down to only one dose of Lortab per day (mainly at bedtime). The rest of the time we are able to use either Tylenol or Motrin to control the pain.

We continue to rejoice over small improvements -- he's drooling less, and he's able to stay awake longer!