Appointment Update...

Yesterday, we had 3 appointments for The Princess. Here is our update on each one. :-)

1) We went to neurology first. She has never slept well and has been diagnosed with sleep apnea a few months ago. The neurologist is not sure her restless sleep is due to her apnea or due to learned behavior. I have agreed to try sleep training to get her to sleep in her own bed and fall asleep on her own. This means we will have to let her CRY all night if necessary. (remember doing this with babies?) Should be super fun! I am planning on working on this over the weekend while Rod is off at a work training event for 3 nights. Please pray we make it through.

If she still has issues with sleeping/breathing at night after we "train" her, we will go back to the doctor to discuss options to help her.


2) We went to hematology second. Her platelet count was still up at 162,000! This was GREAT news! Since her counts stayed in the same range for the last month, we are not moving forward with a bone marrow biopsy at this time. The doctor thinks she *may* have recovered and *may* never have an issue with platelets again. I am not going to get my hopes up at this time, but really want to be done with the ITP chapter of our lives. We will go back in 2 months to do another platelet check. If she has dropped by that point, we will definitely do a biopsy.


3) We went to her allergist. One month ago she broke out in a rash in the morning. We had her tested for several things through a blood draw (since I had given her benedryl we couldn't do scratch testing), all came back negative. This appointment we wanted to do some scratch testing. The last time we scratch tested The Princess she was 1 1/2 years old and it was no big deal. They used this thing that did about 10 scratches all at once.

NOT THIS TIME!

They did each and every scratch individually. She had 63 scratches on her back. She was NOT a happy Princess. There were more tests on the tray, but I had to stop the nurse. The Princess was D.O.N.E. Then we waited our 15 minutes and they came back in to read the results.

The Princess is officially allergic to mesquite trees (yay, AZ! We have LOTS of those), cockroaches (shouldn't be a problem), a certain type of mold (not a problem here either), shrimp (never eaten it before, now will avoid), and CINNAMON. I was surprised that Cinnamon came back positive because it was negative on the blood test. But, she did have benedryl on the day of the lab work, making me wonder if those were false negatives. So, we avoid these things, have an epi pen just in case, and do some more testing in a month.



After our LONG day, The Princess earned her Mermaid Dora she had been wanting. I told her if she was good for her appointments I would buy it for her. She was allowed to cry when she got poked, but had to cooperate for being weighed, measured, blood pressure done, pulse/ox done, when the doctors were looking her over, etc. She was AMAZING yesterday. She has been fighting all of these things lately, so this was a HUGE improvement. Yay, Princess!

Here are some pics from our day...

Waiting for lab results...

Watching a Barbie movie while we waited for our lunch...

Watching Dora while we waited for the Allergist...

A very unhappy Princess after being scratched up...

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

One Year Ago (4/25)...

our lives were changed again. This time it was The Princess' diagnosis with ITP.

The first year with Diabetes seemed to go faster for me than the first year with ITP in our lives. It has been a LONG year of ITP.

You may remember a year ago we were waiting for lab results. We weren't completely sure what we were dealing with or why she was bruising like she was. Then we thought it would be a simple round of steroids, turns out steroids are NOT the first choice of treatment.

The treatment we choose for her comes with some NASTY side effects. We have learned to "beat" the side effects (most of the time)

I learned a lot about ITP in a short amount of time.

We were holding out hope that she would recover and go into remission within the first 6 months. It has been shown that 80% of kids will go into full remission within 6 months of diagnosis. Sadly, this didn't happen. Then we were hoping within 1 year. Well, that hasn't happened either. The Princess has had many IVIG infusions and many, many blood tests to check her counts.

She has also had a bronchoscopy, ear tubes, adenoid removal, and a tonsillectomy in the past year. Each one of these procedures required a platelet check and IVIG for most of them prior to putting her under.

Her platelets have not dropped as low as they did in the beginning, but they never stay up on their own. Her last check was 1 month ago and she was at 150,000. This is good, but they were 250,000 a month prior.

We are going to her hematologist for a check-up tomorrow. If her counts have dropped again, we will be discussing a bone marrow biopsy to rule out any other cause of her low platelets. Since she has had ITP for one year, she is considered to have Chronic ITP at this point, which means it will NEVER go away completely. She may have periods of remission, but may also have periods where her counts drop and she needs treatment.

(I will update after her appointment as to her counts, etc)


I have to say that this diagnosis has changed me and taken over my life more than I thought it would. It has put me in a "rut" if you will, with Diabetes. I can only seem to focus 100% of my attention on one disease and ITP has caused me to lose my Diabetes fighting "mojo". I am working on getting back on track with the D management. I don't want to let this disease to cause The Superhero any complications because I have not focused on him in the last year as much. Time to get out of the funk!


Even with another autoimmune disease in our lives, I am beyond thankful to have my beautiful, happy and healthy Princess in our lives!

Here are some pictures from her ITP journey...

 

  

  

 Keep the prayers coming!



*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

I Believe in Miracles!

If you have been on Facebook this past week, or read some other DOC blogs, you may already know that our sweet friend, Meri and her family were given some not so good news last weekend.

You can read Meri's post HERE. Her amazing husband was just diagnosed with metastasized melanoma. He has 6 tumors in his brain, as well as tumors in his lungs and abdomen. In Meri's post you can read about the treatments they started this week.

A FB page, Schuhmacher Family's Miracle, has been set up for friends and family to gather for updated information, prayer and support during this journey.  We invite you to post prayers and reflections of hope on your personal blogs and websites.  There will be a thread started there, where your links can be shared.  If you do not have a blog/website, and would like to share your prayers, please feel free to add your thoughts and reflections to the thread as well.  By keeping them in one place, the family will easily be able to access your words of encouragement in the days, weeks, and months to come.  Please spread the word to anyone, and invite others to join this massive prayer effort as well.


I truly believe in miracles and I know that this family, specifically Ryan, need one NOW.

I am joining the Schuhmacher family and friends in a day of prayer and fasting tomorrow. I will spend the day praying for a miracle. A true, God is the only one who can do it, kind of miracle.

And to quote my pastor (thanks, Steve!) "Big issues demand big prayers to a big God."

And I truly believe it can and will happen.

I am not typically a "public" prayer kinda person, please bear with me.

So, God, I know you are listening. Here is my plea.


Dear God,
I thank you for being a God who can do so much more than we can do ourselves here on Earth. I have complete Faith that YOU, God, can heal Ryan Schuhmacher. And that is what I am asking of you now. I ask for comfort and peace while he endures the treatments in the days, weeks, and months ahead. But what I want more than anything, is for a miracle. The kind of miracle I know only you can give. In Jesus' name I pray, Amen.

Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.

Mathew 18:19-20 

 

We are also uniting to raise money to help with Ryan's battle against cancer.  If you can help in any way, please visit the Give Forward site below.

Medical Fundaising Made Simple

Most importantly, please continue to pray for the Schuhmacher family, specifically for a miracle for Ryan.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*