Kennedy Krieger - atleast they had free valet parking

I think the best part about our feeding evaluation with KK yesterday was that they had free valet parking. 

Does that give you an idea of how our appt went?  Ana (our fab speech therapist) went with us and would probably say it wasn't that bad.  I on the other hand feel very deflated.  I will say that I put way too many expectations into this appt and that it's my fault that I am disappointed.  I thought they were going to be the magic bullet that solved all of Caelen's feeding issues and got him eating like a normal healthy child. 

Basically in a nut shell here is what they had to say: Caelen is not ready for their feeding program yet. They are afraid of him from a medical standpoint and I wasn't expecting this. I am so used to dealing with the folks at Children's who see kids like Caelen daily and aren't phased by his extensive medical history.  I'm not even phased by it anymore, in fact I think he's doing remarkably well, and dare I say normal!  So it was disappointing to see a feeding team apprehensive about working with us right now.  They don't like that he de-saturated down to 74 when they scared him.  But he recovered back to the 80's very quickly (we're talking less than 2 minutes here.)  To their credit, there was not a GI Dr there or a cardiologist, rather, the team consisted of a Nurse Practitioner, nutritionist, speech therapist  and behaviorist. 

Again, I expected more than what their program offers, and assumed the team would have a doctor there to understand his history and assess his condition as it relates to moving forward with feeding.  While the Nurse Practitioner tried, it's not her fault that they aren't familiar with his cardiac condition.  I guess what baffles me is that their specialty is getting tube fed children to eat.  What it really boils down to is that they get tube fed children with behavioral problems to eat, not tube fed children who have tubes as a result of prolonged medical care.  Did I mention that KK is part of Hopkins?

I pondered this on the drive home and for the rest of the night and was just so deflated.  So I was glad when the speech therapist called today to verify Ana's name for their note, and then asked me if I understood why Caelen isn't ready for their program yet.  I got a chance to speak my mind and tell her that I don't understand why KK would take another heart patient and friend of ours into the program, but not us.  I told her that they are afraid of Caelen's medical history and that they aren't giving us a chance.  Not that it matters, but it made me feel better.  We agreed to have another eval in 6 months and take it from there.

Since I have been so negative, allow me to be positive and brag about the fabulousness that is Ana!  Since Ana demonstrated the feeding routine for KK,  they didn't really have a lot to offer in the way of suggestions for feeding Caelen.  They thought that she and we (nice grammar, eh?) are doing everything that we should be doing, and they were impressed with how well Caelen has done in such a short amount of time.  Yay for Ana and Caelen!  So, we'll just keep plugging away and make our own progress.  I would love it if when Caelen is finally "ready" for their program, we don't need it anymore.  That would be awesome!  Now that's something to pray for ;)

Other than that, the little monkey, who is now called the little monster because of his monster noises is doing well.  When I ask him if he's a monster he grunts.  So it's cute, he's like a toy.  He scoots down the halls making monkey noises when he's really excited (seriously, it sounds like we have a pet monkey), and when he's happy he makes monster noises.  He is doing better with standing and walking with assistance, but he's still hesitant to "cruise" along furniture.  But he's getting there.  I am happy to be planning his 2nd birthday party at home <GIANT SMILE> and my stress for that is do I go with dinosaur theme or Yo Gabba Gabba, lol!  These are good problems to have, especially compared to a year ago.  And for anyone who might be wondering, yes, I have already ordered the cake, and yes, it will be 3 tiers again ;)

Thank you to all who still keep up with Caelen and my ADD brain.  We hope everyone has a great week!

Love, Katye, Martin & Caelen

quick update

Quick update for the platelets...

Martin took Caelen this morning and his platelets were back to 150, so thank God again for small miracles, we're back in the right direction.  The viral rash appears to be dissipating and the other 2 are hanging on. 

We took Caelen to dinner tonight with Martin's Family and he did surprisingly well!  Sat in the high chair for 2 hours!!!  Maybe this means we can actually go to dinner as a family?  Again, small miracles.

Have a great weekend!!!

Love, Katye, Martin & Caelen

yuck, what is that?

Yuck, Caelen has 3 different rashes going on, nice huh?  He has folliculitis in his diaper area from playing in his pool, a viral rash which is contagious and pitikia which could have come from the virus.  When he does something, he makes sure he goes all the way.  The pic below is just the face rash and it's kinda hard to see, but he is a hot mess!  This was in the Wednesday Dr appt.  Dr. said it was just viral, leave it alone, it'll go away in 5-7 days and give benadryl 4x day.

On Thursday I went back to a different pediatrician in the practice b/c I had a feeling more was going on than just a viral rash.  The look on the 2nd Dr's face said it all, lol.  This was not something benadryl was going to help, so we got an antibiotic for the folliculitis and a topical for his diaper area.  He seems to be handling it for the most part.  He had to get a finger stick yesterday to check his white blood cells and his platelets.  WBC's were good and platelets were slightly below normal (131 vs 150 normal), so we go back tomorrow morning for another finger stick to see which way he is trending.  Hopefully up since the rash started on Monday.

This morning he got his hearing tested b/c the docs were worried that Caelen might not have full range in his hearing from all of the antibiotics and diuretics that he's been on.  Thankfully, Caelen passed all tests and his hearing is good.  Hooray for small miracles :)

I'm flip flopping back and forth b/c I have severe ADD today, but we also had a kidney ultrasound done yesterday and today for routine follow up before our nephrology appt this month, and blood draw attempts last Thursday and Monday for same appt.  I say attempts b/c Caelen didn't want to give up the blood.  We've destroyed his veins.  Not sure what to do for the blood work, but the kidney doc said we could wait a little while and figure it out later.  I have a feeling we'll be making an appt with Sam from the IV team at Children's.  Maybe we'll make a day of it and visit Caelen's favorite nurses.

Ok, going back even further in our recent history, Caelen got his first bloody lip a few weeks ago.  He fell mouth first into the coffee table.  Blood was everywhere and I gotta say, that one freaked me out.  It's weird how the big stuff like heart, kidneys, lungs don't worry me, but a busted lip and blood scared the heck out of me.  I guess it's the fear of "normal" kid things that I am only now starting to experience.  Thankfully, my friend Kelly answered her phone when I called and told me to put ice on it and hold pressure.  So I gave him a frozen washcloth that he ate for 2 minutes max and then went back to eating cheerios.  Clearly he was fine, and I was very happy that he clotted so fast considering he is on baby aspirin to thin his blood.  Here's a pic of the busted lip

and the bruised lip that followed

We are anxiously awaiting our appt with Kennedy Krieger on Tuesday for a feeding evaluation to see how Caelen is doing and see if they can offer any help.  I'll be sure to post their findings.  Other than that, we don't have a whole lot of plans this weekend, just gonna hang around and stay away from Drs as much as possible.

We hope you all have a wonderful 4th of July!!!

Love, Katye, Martin & Caelen