Wednesday, February 15, 2017

February Fun

Life has been busy!  I realized that I haven't updated in a few weeks.  We are still in survival mode over here.  We take life day by day over here.

MRI-

P went in for her MRI so that they could take a look at the outside of her digestive tract and to get a fuller picture of what was going on.  Unfortunately we had to sit and wait for a long time because there was a patient in emergency that needed the machine so we got pushed back a couple of hours.  She was a trooper!  She did great during the wait and did great for the procedure as well!  The only thing that I was unaware of going into this is that they would be putting a breathing tube in.  I put my brave pants on and tried not to freak out about it!  She was knocked out for 3 hours for the MRI.  I, of course, was a wreck.  I gnawed through a roll of tums and wandering aimlessly through the hospital and at one point sat in the lobby and stared at the ceiling.  I am REALLY not a very patient person!!

A girl and the iPad and her blanket...happy baby!  The earbuds didn't last very long.  We forgot HER headphones.  :(

Watching her THIRD movie as we wait patiently for our turn.

Beating momma at Go-Fish!


Infusion #2-
P still fought the IV for her infusion.  But once the IV was in, she did great!  She had plenty of company for this infusion.  Her Grammy and Papa Otto joined us and so did "her" Joe.  They had a great time playing with an IV kit to help her become more comfortable with the process.

Dr. P & Nurse Joe giving the babydoll an IV.

Goofing around!

P has started her anti-rejection medication, Imran.  Finally one medication that tastes good and that she actually doesn't mind taking!!  She is still on the Iron (which she hates) and is now on Vitamin D as well.  We will be starting some probiotics for her as well pretty soon.  She is still drinking the Boost drink boxes.  We are starting to get creative with shakes/smoothies in addition to drinking the drink straight from the box.

We met with the dietician as well.  Right now, she wants to keep P on the least restrictive diet. Other than adding the drink boxes, we haven't made any changes to her diet at all.  This could change as we proceed but the biggest concern right now is getting weight back on her and we will do that in any way possible!

This week we meet with the Immunohemotology unit to determine if P has an immune deficiencies.  We also go back to do more blood work to see if any of our levels have changed.  Keeping our fingers crossed for positive news on both fronts!!

TACOS! A friend of ours made dinner for our infusion day.  P was a HUGE fan!  She has been obsessed lately with tacos and pepperoni.  Must have something to do with the spicy factor.
Sometimes we let her do anything that makes her smile.  She insisted on taking her baby, Mabel, and her stroller with us to the high school basketball game!  Whatever makes her happy!!

P and Momma built a fort.  She decided that she needed to post a sign that no gorillas were allowed!  :) 









Sunday, January 22, 2017

THIRTY!!



Pretty excited!  One of the scary parts while we worked through this diagnosis was the fact that P was losing weight.  At her well visit in October she weighed in at 32 pounds.  She has always been a little peanut but we were excited that she had broken the 30 pound mark!!  Since then, however, P has continued to lose weight during this flare up.  When she went in for her scope on January 11th, she weighed 25 pounds.  That was really scary for me!  For her to lose the weight that she really can't afford to lose is frightening.  She was wasting away!  Since the diagnosis, we have worked really hard to focus on her food and have given her some high calorie items.  This weekend, we popped her on the scale and checked again. THIRTY pounds!!  She has gained 5 pounds in the past week and a half!  So excited!!  Hoping that as she continues treatment that this continues in a positive direction.

We were given an awesome stash of Boost Kids Essential drink boxes that have 1.5 kcal.  They have more calories in them than most other drinks that we have found for her.  P loves them!!  We have a stash to last a couple weeks but will need to purchase more in the near future.  They are not cheap.  SO...if you know of anyone that is a medical professional, nutritionist, dietician, etc that receives coupons, please ask if they have received any coupons for these.  We would love to reduce the cost of those if possible.


Friday, January 20, 2017

Pumping Iron

At each infusion, P will have her blood taken and sent to the lab. We got the results today. Everything is normal with what they usually see in patients like her. There were two things that Dr. Cardenas wanted to attack sooner rather than later.

The first one is her white blood counts.  The numbers indicate a possible abscess in her intestines.  So our MRI was moved up two weeks.  We will now have her MRI on Friday, January 27th.  Please pray that she tolerates the sedation for the MRI and that no abscess is found.  If they find one, she will be put on a round of steroids and then have another MRI done.  If it still found after the 2nd MRI, they would do surgery.  We want to avoid all of this if at all possible.  Prayers would be greatly appreciated!

The other thing they found was low iron numbers.  Out of everything, this is the thing I can handle easiest!  We will begin pumping P with iron supplements to help her numbers.  She may be on them only until her next labs or she could be on them much longer.  The only downside is that the liquid iron doesn't taste very good.  :(  So I am sure this will be a battle each time she has to take it simply because of the taste but we battled a horrible tasting antibiotic 3 times a day with her in September.  We can handle this!!


Wednesday, January 18, 2017

Infusion Day

Those of you who know me well, know that I am not a calm person.  I am a hypochondriac. I have very high anxiety.  I am a walking basket case.  And then you add on top of that anything to do with my kids and I am a wreck!!  Good things, bad things, scary things...all of it.  So you can only imagine how well I am handling all of this!  Surprisingly, today I was relatively calm.  Even surprised myself. I started to think that maybe I am finally pulling myself together...and then tonight happened.

Checking out the play area in the waiting room.

She LOVED this wall and could have played with the different levers all day.

Today was P's first Remicade infusion.  I didn't know what to expect but everything I had read online talked about how much patients started to feel better so quickly after beginning treatment.    We arrived at Floor 7 of Mott's Children's Hospital.  Hematology/Oncology. Every kid in there is battling something fierce!  Some are quite obvious.  Others are invisible.  Like Crohn's.  I am finding that people don't know about Crohn's or don't understand it.  The child doesn't necessarily "look sick" but yet their gut is going crazy inside of them!  (I will get on my soapbox later about this disease and what I have learned.)

We met right away with Mallory.  She has been the nurse in the Gastroenterology department that has communicated the most with me leading up to today.  I feel like I have talked to her almost every day in the past week as we arranged certain parts of P's treatment or through email as she answered some of my more irrational questions that I would send to the office in the middle of the night as I laid awake.  I wanted to hug her when I saw her.  She has been so kind and reassuring.  She went over some of basic information with us and answered some of our questions.  She also gave us a binder full of information.  A binder!?!!?  You KNOW I love a good binder!!  (Of course I had created one of my own already but I was still excited.)  It is such a great resource to have as we try to navigate all of this.

We were sent into another room for P to get her IV.  Have you met our little drama queen??  You would think that she was being murdered the way that she carried on and on and on....and there wasn't even a needle insight yet!  Just the anticipation was enough to send her through the roof.  I am pretty sure that all of Ann Arbor heard our little sweet P not acting so sweet.  Our nurse was fantastic with her!  Very patient.  She kept telling me that they have had worse.  (I am not sure if they just say that to make me feel better or if that is really true!)  After we got the IV in and Penny and I were both soaked in sweat, they were able to take a lot of blood for more labs to be done before beginning treatment.

Penny was set up in her only little cubicle of sorts.  It had a recliner for her, a rocking chair and two other seats.  We were on the end and it was the perfect spot for her to be in.  Not to mention that it was right next to the fridge full of juice boxes, bagels, popsicles and ice cream.  P was pretty happy about that!  We scheduled the rest of her treatments for the rest of the year and they told me that they would make note of putting her in the same spot each time.  She was then hooked up to the Remicade...and there we sat...and sat...and sat. We were there for almost 5 hours.  Seems like a long time but it actually flew by!

During this time, Dr. Cardenas came to speak with us about all of our concerns and talk about her treatment plan.  It doesn't sound like we will have infusions as often as we first thought so that is a good thing.  There is so much that is unknown about this disease and every patient is different so we will just take it day by day but we feel that we are in very capable hands and in the best place that we can be.

Getting use out of her new colored pencils.  We put together a little bag of tricks to entertain us.

Snuggled up watching Tangled.

Dr. Cardenas met with us for quite a while and also checked P out while we were there.  It was fantastic that they were able to combine the treatment and our first meeting with her at the same time. 


After the IV was put in, P tolerated the treatment just fine. She did spike a fever, which I was told was very normal and that it would subside probably before we even left...which it did.  We were told that everyone reacts differently but most either sleep all evening and just want to be snuggled up OR they have an energy burst and are hyper.

Momma and Dadoh bought her a little present for doing such a great job at her first infusion!  She loved her little gnome that she named Lovey.  Love seeing that smile on her face!!

On the way home, P asked for McDonalds.  Whatever that little peanut will eat right now, she gets!  Before we could even get off the exit and get it for her, she was passed out.  It's exhausting being so brave!

We went straight to her sitter's house to pick up Gus and attend the Norwex party our sitter had tonight.  When we got there, P was super crabby and rude.  I tried to let it go because she had been through a lot today.  But shortly after, she started playing with her friend, K, who was also there with her mom and before you know it, P was SKIPPING through the house!  SKIPPING!!  And running around!  We heard giggles and screeches!  Clearly she is responding with the hyperactivity!  :) This behavior is something we haven't seen since June.  I had to leave the room to pull myself together.  Remember how I talked about the crying with good things and bad things.  This was a good cry.  So excited.  So encouraged.

video



The video above is what is currently going on in our household at almost 10 PM.  Love this goofy girl!!  If tonight is any indication of this medication doing its job, then I am very excited! I know it is too soon to see results, but I am so hopeful!!


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