My life with The Superhero and The Princess: ITP

Showing posts with label ITP. Show all posts

Tuesday, April 24, 2012

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.*

Friday, March 2, 2012

What a FUNK, and some updates...

Well, HELLO there!

Has it really been 4 1/2 months since my last post? Wow!

Life has been crazy.

Isn't it always?

And I have been in a major FUNK.

Diabetes FUNK.

ITP FUNK.

Sleep FUNK.

Blogging FUNK.

You get the picture.

Time to get out of this FUNK and move forward. I miss blogging, I really do. Just trying to fit it into my life these days has been impossible. Clearly.

So, what have we been up to since November 2011?

Here is the quick bullet point update...

The Princess had a sleep study done in December 2011. We had this done due to her continuing sleepless, restless nights. She hated the study and being hooked up to everything you can imagine. The results showed mild sleep APNEA, for her mostly hypopneas. It made total sense to me. She has never breathed normal when sleeping. Ever. I have always noticed a change in her breathing while she was sleeping. As to why, they have no idea. She doesn't fit the description of a "child with apnea". She isn't overweight and she didn't have enlarged tonsils. We are still working with her doctor and I have emailed a specialist in CA to see what else we can try.

The Princess had her tonsils out in December 2011. We did this in response to the above diagnosis. I pushed to get it done before the end of the year since we had met our out of pocket max for her. Of course, anytime we do any procedure, we have to get her platelets checked first. At this time, they were too low for this messy procedure and we had to do another IVIG to boost her counts before surgery. We also had to stay overnight for observation due to her ITP. And let me tell you, she is NOT a very patient patient! She tried taking her IV out a few times before we taped a sock over it. She would not let me leave the bed without FLIPPING out. It was nuts. But, we only stayed one night and she healed fine. Unfortunately, this did not help her sleep. Or it hasn't appeared to in the months following surgery.

The Superhero had his quarterly endo appointment in December and his A1C was still higher than I like. He is back in the 8's and I can't seem to get things straightened out. We go back in March and I am praying for better numbers. There is nothing consistent about his BG these days. This is making it HARD to know what to change and when. I am sure it will settle down at some point.

Both kids had croup in January. This meant steroids for both. For The Superhero, this meant HIGH BG's and, hello, that is not helping the A1C! And for The Princess, it boosts her platelets. This can be deceiving and make it look like the ITP is better, when it really may be false hope

The Princess has gone for platelet counts several times over the last few months. Each time being either after an IVIG treatment, or after steroids, her counts have been good. We go back again in April. It will be 1 year since her dx with ITP. If her counts drop by then, we will be discussing doing a bone marrow biopsy, just to make sure there isn't anything else going on.

The Superhero is still in pre-school and loves every minute of it. He has been signed up to start Kindergarten next year. I am still in denial.

The Princess has been put in and taken out of daycare again. I need her to go so I can get work done during the day, but she got sick 3 times in the 2 1/2 weeks she had been back. I have found a much better solution that is working out SO much better. A fellow D Mama and friend of mine who lives 1 mile away does pre-school with her niece and nephew a few days per week and has graciously allowed me to drop The Princess with her three days per week. The Princess is in LOVE with her and her kids. They do so many fun things that I think if there was a choice, The Princess would live over there.

Whew... Now that you are caught up on what we have been up to, I promise, ok maybe I shouldn't make a promise I am not sure I can keep... I will do my best to keep up with blogging more often. I miss it. I really do. I just need to make it fit into my life again.

Friday, November 18, 2011

BIG Princess News...

My Princess is FINALLY potty trained! 100%! She has had NO accidents during the day or night in over a week. And what did she get for that? Besides the prize every day, of course...

She got her EARS PIERCED!

We told her last week that if she went a whole week with no accidents, she could get them pierced. Well, she must have really wanted holes in her ears because she DID IT!

Here is our ear piercing experience in photos, and then a little about how things got complicated...

She has NO idea what is coming...

Putting dots where the studs will go...

Getting a little nervous, but still not really sure what is happening...

Get ready, get set...

...GO!!!

She calmed down once we showed her the earrings in the mirror. Still not happy though.

Beautiful little pierced ears...

And then the drama came in. No more than 2 hours after she got home, she snagged one on a couch pillow and pulled it out. Daddy couldn't get it back in. So, I took her back up to the mall and had them do it again. :-(

She KNEW what was coming the second time and it was NOT fun.

I had to tell her she HAD to let them do it, or we had to take the other one out. She sat still and let the girl put it in. And she now has 2 beautiful flowers again. And I have a similar pair so we can match.

And to ruin my "fun" I woke up in the middle of the night wondering how her ITP and ear piercing would go. Hoped and prayed her platelets were still up around 64,000 where they were on Tuesday. I seriously should NOT have to worry about something like another stupid autoimmune disease when all I wanted to do was have girl time celebrating a HUGE accomplishment. Oh well. Not much bleeding and the ears are done.

*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.*

Tuesday, November 8, 2011

I don't want to talk about it.

It is November.

November is Diabetes awareness month.

Last year I spent the entire month posting facts every day about the disease that our family and many of our friends deal with on a daily basis. (you can read last years posts under the Facts about T1 Diabetes tab at the top of my blog)

This year, you wouldn't even know diabetes was such a huge part of our lives. Not because it has gone anywhere. Not because I don't think about the stupid disease all.the.time. Because I do, of course. I spend every waking moment, and some sleeping ones too (weird dreams, so not fair to dream about diabetes).

The thing is, I just don't want to talk about it.

I am tired of this disease.

My Superhero is tired of this disease.

I don't want to talk about the fact that his last A1C was higher than it has been in a year and a half.

I don't want to talk about the fact that I have let pump sites go as long as 8 days before changing them because I am so incredibly busy that I can't keep my days straight. And I only changed it then because we had our very first low cartridge warning.

Even though I know THIS is our month to educate and inform the public about a disease that can take my kid's life, or any of theirs for that matter, I don't want to talk about it.

Major Diabetes burnout going on here.

And I don't want to talk about it.

Wednesday, October 26, 2011

Appointment Update

Yesterday we went for The Princess' hematology and ENT appointments.

We received great news at hematology. Her platelets are still up, 94,000! The doc said that since it has been 6 weeks since the last IVIG treatment The Princess is probably making platelets on her own.

We have heard this before, and then 2 weeks later her platelets dropped. I am trying to hold out a little hope this tme.

The doc also said that she really feels this is just ITP and she does not see a need for a bone marrow biopsy at all. That was also great news.

We go back on the 15th, or sooner if needed.

The ENT agreed with me that a second set of ear tubes would be beneficial. The left ear, ehich has no tube currently, is filled with fluid. We will also have her adenoids removed. This is commonly done when a second set of tubes is needed. I was told the scheduler would call me.

To my surprise, I got the call this morning. They have an opening tomorrow for the surgery. Since her platelets are up today, I took it.

So, she will go in tomorrow morning to get all this done. And hopefully she will feel great by Friday for her birthday. Maybe she will even start to sleep through the night!

I can hope...

Wednesday, October 19, 2011

Where do I begin?

Sometimes I don't even know which way is up any more. Our crazy normal continues around here. The kids have both been sick off and on for the past 4 weeks or so. We all currently have a sinus/ chest congestion. We all sound like we have bronchitis/ croup going on.

The Princess just really started sounding bad last night/ this morning. She woke up struggling to breathe, super seal sounding, and wheezy. I called and scheduled an appointment with the pediatrician.

Before we left I remembered that the hematologist had said she did not want The Princess put on steroids if we could help it. At the time she said it, I didn't ask why. It wasn't relevant at the time. I am thankful I remembered this today though. typically, for croup, we would put The Princess on steroids to help her.

So, I called the hematology nurse and left a message. She called me back on our way to the pediatrician. We discussed that of course if The Princess really needed the steroids to help her breathing, we would do it. But, if we can avoid them, we should.

Since The Princess has has ITP for almost 6 months, we have to start looking at other possible causes of the low platelets. It could still be just a low platelet problem, ITP. Or there could be a problem with her bone marrow. Even with no other symptoms.

So, we will be discussing a bone marrow biopsy with them at her appointment next week. If we give her steroids now, it could affect her bone marrow and give us false results.

The one plus of this, if there is one, is that we should be able to combine and do both the bone marrow biopsy and the ear tube/adnoidectomy/sinus cleanse all at the same time.

I will update after both appointments on Tuesday. Until then, please pray for calm nerves around here. I am trying not to stress about any of this and to give it all to God. It will all be ok, one way or another.

Tuesday, October 11, 2011

Where have I been? An update...

Hello Blogging World!

Things have been nothing but CrAzY around here, as usual. I guess that is our normal now.

Last time I posted about The Princess she had a day of an IVIG treatment prior to her bronchoscopy.

And I realized today when my dear friend, Chasiti, posted on my FB wall that she wanted an update on The Princess, that I hadn't updated anyone about anything. I have been in a funk of sorts with everything going on.

Well, here is the update...

We had her bronchoscopy on 9/15. She had her platelets checked that morning and they were above 100,000 and she was cleared for surgery. The bronchoscopy was done and over within minutes. The pulmonologist said she had the most beautiful airways you could imagine. We discussed the swallowing disorder and she, along with the other pulm. docs, are investigating the diagnoses of dysphagia. She said that more and more kids are being diagnosed with it from their radiology department that they are wondering if they are over-diagnosing. We discussed transitioning The Princess to regular liquids over time. I took it upon myself once we were home to try The Princess with plain water. She has been doing GREAT since. She originially was coughing a lot when drinking. Now I am wondering if her asthma was out of control back then and that is what caused the coughing and not her swallowing at all. Anyway, for now, I am doing plain water mostly and she is in Heaven.

We have been back to the dermatologist and the rash on her face was not clearing up. She started her on 2 months of Zythromax, to be taken 3x per week. Her face is clear now and I am hoping it stays that way.

The Princess was diagnosed with a Sinus infection back in August. After 2 rounds of antibiotics I took her back to the pedi, along with The Superhero. They were both very sinusy (is that a word?) and had goopy eyes, etc. We decided they both had sinus infections and they were both put on one month of antibiotics. The Princess can only have Zythromax, so we upped the dose this time.

We followed up with the ENT for The Princess last week due to her ear tubes. It has been a year since they were put in.The left one fell out a while ago and was stuck in the wax. The ENT was able to get it out. The right one is still in place for now. We also discussed The Princess' sinus infection. I am concerned that we are putting her on antibiotics for such a long period, and there is only ONE she can even have right now. I am very worried about the possibility of her developing antibiotic resistance. I have even contemplated pulling both of my kids out of school and keeping them in a bubble at our house. We stayed in most of last winter due to illnesses and it seemed to help. But, that is not as realistic this year. I am busy with work and can't have both kids home with me all the time. Anyway, back to the ENT. He said to keep her going on the antibiotics we were doing for now and to follow up with him in a month. He mentioned the possibility of surgery for her sinuses. We have an appointment on the 31st of October.

In the meantime, I looked up other ENT's. Not because I don't like ours, I do, but he does not do any sort of surgeries at the children's hospital. And after her ear tubes were put in at a surgery center, and they kick you out the door as if she was an adult, I decided I wanted to keep any surgeries that are required at the children's hospital if we can help it. So, I found a ped ENT who does surgeries at PCH, and he has an office about 3 miles from my house as well. PERFECT. I called yesterday and they were able to get us in TODAY. He looked at her CAT scan from the end of August and agreed she had a sinus infection. He said he would not do surgery for that alone. BUT her left ear, the one with no tube currently, was filled with fluid. He said a second set of tubes was probably not out of the question. And if we put new tubes in, we will take out her adenoids and clean out her sinuses while we are in there. We go back in 2 weeks on the 26th to see how her ear looks and make a decision.

So, that is where we are at right now. I am thinking surgery for the ears/adenoids/sinuses will be happening. And that means a platelet check and possible IVIG beforehand to make sure she doesn't bleed all over. Fun times in our house!

I feel like the "If you give a mouse a cookie..." series right now. :-) (Those of you with small children HAVE to know what this book is)

At least she is still pretty happy and growing up WAY too fast...

Tuesday, September 20, 2011

The facade...

There has been a lot of talk of rainbows, unicorns, and glitter in the DOC lately (Diabetes Online Community).

It has also been brought up that people who blog are too negative and are perceived that their lives suck. I haven't said much about this until now. It got to me last night when I read another comment about it on Facebook.

Here is what I would like to say to those people.

I, like I know many of other bloggers are as well, am a very positive person. We live life just like you and see positive things going on in our lives. We really do. These typically are not the things that make it onto the blog to be shared with our readers.

And I think I know why.

Each and every day in our "normal" lives we are forced to put on a facade of sorts. The people we see and the interactions we have are not typically related to the disease our kids fight day in and day out.

We know our struggles.
We know we have long nights of checking blood sugar.
We know we have long nights of fighting highs and lows.
We have days where we fight them too.
We have battles where our kids sneak food.
And battles where we can't get them to eat at all.

This is truly what our lives consist of. Sure we have other things going on too. You know cooking meals, cleaning floors, doing laundry, etc. But it is these "extra" and highly necessary tasks that tend to bring us down.

We cannot share these things with our day to day interactions. They don't get it.

So, we put on our facade for them. They often see diabetes as "easy". Why? Because they don't see all the struggles. They might see a finger poke. They might see snacks being given. But to them that is it. Diabetes is no big deal.

But we know different. We know all the work that goes into every decision we make. We have to think and make decisions on why this low needs 5 skittles and that one needs 1/2 pack of fruit snacks.

We tend to hide what is really going on from the people who don't get it and don't have diabetes to deal with daily.

Hence the facade.

Instead, we bring that here.

To the DOC.

We use blogging and Facebook as a safe place to share what is going on. To share our frustrations. To share the "negative" stuff. This is where we get it off our chest so we can move forward. Once the emotions and feelings are OUT, we can move forward. Just because we may seem negative in our posts, that does not necessarily mean we are sitting around moping all the time.

And sure, there are times when we get into a little bit of a diabetes rut and we might be a little more down that normal. And you know what, that is ok! We all have our good days, weeks, and months managing a crappy disease. And we have our share of bad days, weeks, and months too.

Because no matter how you look at it, Diabetes sucks.

The only saving grace for me is that I have all of you for support and this blog to get out the negative crap so I can move on.

There are no rainbows, unicorns, and glitter on a daily basis with this disease.

And if you want to put on a facade of your own and make it appear that is what your life is all about, go for it. That is your choice. But please don't put those of us down that don't see life that way.

In my world, in the life I live, it is ok to have emotions other than rainbows, unicorns, and glitter.

Wednesday, September 14, 2011

"You don't know what it's like."

This is what I heard yesterday. Let me start at the beginning...

I took The Princess for blood work on Monday after discussing her upcoming bronchoscopy with the hematology nurse. We decided we needed to know where her platelets were before the procedure. I got the call the next morning that she had dropped from 137,000 the week prior to 68,000 this week. 50% drop in less than a week was not good. We made the decision to go ahead with IVIG now so we could guarantee her platelets would be up enough for the procedure on Thursday. We rushed down to the children's hospital, got her IV in on the first try, and got her all hooked up.

While we were sitting in our. Infusion spot for the day, I heard a heart wrenching conversation that seriously broke my heart and made me think. This conversation was between a mother and her son. I don't know their story. I just know we were in the oncology/hematology clinic infusion area. I know the boy had a IV and was getting some sort of infusion. They discussed with what seemed like his doctor about leaving his IV in and starting IV fluids at home because he was not drinking enough. When the doctor left, this poor child had a melt down. One that brouht me to tears.

He was crying saying things like...

"I don't want an IV! Take it out!"

"You don't know what it is like to have surgeries and IV's and stuff!"

And his mom's response, made me a little mad.

She said "Well, you don't know what it is like to watch someone go through all of that either!"

Mad.

And quite sad.

Why did she react that way? Why couldn't she just let him have his pain for whatever ails him? She could have just said, I know. I don't know what it is like. I am sorry you have to go through so much. It isn't fair and it is ok to be upset about it all.

Or something like that. Because the truth is as a parent I have no idea what it actually feels like to be the one going through the medical challenges myself. And I would never want to discount what the person themselves is feeling. Medical stuff sucks and it is not fair.

And I don't think it is fair to compare the pain and challenges of the parent managing the medical challenges to the kids living with them.

This mother and son taught me to let my kids feel what they feel about their diseases and to not let my feelings overpower theirs. Because what I deal with is nothing in comparison to what they live with every day.

Monday, September 12, 2011

A glimpse into the week ahead...

It seems we never have a dull moment around here. And we rarely have a week without someone having a doctor appointment these days.

Last week we received some decent news. We went in on Wednesday for The Princess' platelet check to find out that the steroids she was on for her asthma the week prior helped her platelet count A LOT. She was back up to 137,000! Amazing. We avoided an IVIG treatment for now. We scheduled her next appointment for 3 weeks from then, on September 28th.

Today we are going to the dermatologist for a follow up for The Princess. She has had this rash (perioral dermatitis) on her face since May. The dermatologist had us using a protopic cream 2x per day for 6 weeks. I wish I could say she was "clear", but she is not. I forgot to use the cream for 1 1/2 days last week and the rash came back worse than before. The rash is not contagious, it just looks yucky and bothers The Princess a lot when it is bad.

Tomorrow I take The Superhero for his quarterly endo appointment. My dad asked me why I even take him for these appointments. We do all the adjusting on our own. The only reasons we go I guess are to get his A1C and to hear how great she thinks we are doing. Somehow that helps me keep plugging along with Diabetes. I am not nervous at all this time around. Diabetes (knocking on wood) has been ok lately.

The longest day of my life so far...

I have had plenty of long days in my life. But nothing like today!

We started with The Princess' hematology appointment. Some good news there, sort of. Her platelets were down from the 67,000 we had last week. 25,000 today. This is of course very low, but not low enough to warrant a treatment. We will go back next Wednesday and will be prepared to stay for treatment if platelets continue to drop.

Then we went to the pediatrician. This was not originally on my plan for today, but The Princess woke up with a terrible cough at 2am. Very croupy sounding. Her inhalers seemed to help after a while and she went back to sleep around 4am. She kept saying "my ear hurts" and "my don't feel good".

The ears looked fine to the pediatrician, but we wondered if there was some sort of pressure she was feeling since she continually complains of ear pain, even with no infection. The pedi ordered a CT scan of the sinuses, STAT.

I called the lab and got an appointment for a little over an hour later. Just enough time to grab some lunch before the scan.

The kids and I enjoyed a picnic lunch in the back of our van. They thought it was cool to be in the van and out of their car seats.

Then we went for the CT scan. The Princess was SCARED. Poor thing. I had to stand above her and try to hold her head still while they scanned. She cried. Luckily, she held still enough they got what they needed. We would have results before the end of the day.

We got back in the van and I told the kids it would be a good time for a nap while we drove back down to the children's hospital for the pulmonology appointments. The Superhero was fast asleep. The Princess kept herself awake coughing her poor little head off.

I drove around extra to waste time and let The Superhero sleep. I ended up pulling over at one point to do The Princess' inhalers. She just can't seem to quick coughing. After some wasted time we headed to the appointment. Both kids had pulm. appointments. The Princess had a follow up for her asthma and The Superhero had his first appointment for a croup evaluation. He has had croup WAY too many times this year.

The appointment went well for both kids. As well as can be expected I guess. The Princess is starting steroids tonight for her "croupy" cough. She seriously can't stop coughing! She has barely stopped coughing for more than a minute since mid-day today. Crazy.

And The Superhero officially has asthma as well. He actually thinks the inhalers are cool, for now. We will follow up for both kids in November.

The doc was concerned that The Princess did not pass her swallow study again. She is going to schedule a bronchoscopy to see if something more serious is going on. This will be scheduled soon.

After that appointment, we headed home. Finally. I was/am wiped out!

I got things ready to make dinner when I got home. Then I got the call from the peds office. The CT results were in and The Princess officially has a really bad sinus infection. Antibiotics for the next 5 days, off 5 days, on 5 days. And a re-check of the CT scan in a month.

So, here we are, $150 in copays and $100 in rx's later.

So thankful today is almost over. Now hoping for better sleep tonight than last night.

Sunday, August 21, 2011

My, my, my, times have sure changed...

It was just over a year ago that The Superhero was first officially heading to pre-school.

Our first day was ROUGH, and that is putting it lightly.

The second day was a little better.

The third day drop off went amazingly well! And he came home alive.

And before I knew it, we had survived the first week of school. We got our 504 in place.

We survived a change of clothes and pretty panties.

We survived a REALLY rough day.

We battled breakfast. And survived.

We even survived a field trip!

We did end up pulling him out after he was in the hospital with a tummy bug in January. I couldn't spend the money for him to not be going.

And after ALL that, I would go through it all again. He LOVES preschool. A lot.

Tomorrow he starts. We have his first day of his second year of pre-k. And this time, I am not nervous. I am not worried. I am super excited and can't wait to take him to school!

The difference? We have been there. And not only that. We have been there with the SAME nurse AND the same teachers. No one new to train. They survived 1/2 year with him last year. And I know they will again.

It was a GREAT sign that THEY emailed ME to set up his 504 meeting this year. I went in and they already had the papers printed from MY revised copy. All we had to do was sign the papers saying we held the meeting. And that was it. Easy peasy this year.

So, to all of you who are sending your little ones to preschool with Diabetes this year, know that YOU can do this. The kids will be OK. And you will too. I promise!

Thursday, August 18, 2011

Sending kids off with friends...

I was thinking today, as my Superhero is off spending the day with Kris and her Sugar Bugs, that sending a D kid off is SO much different than a non-D kiddo.

I know this is no shock to most of you, but let me explain what I am thinking.

If I were sending my non-D kid off with a friend, it would most likely be HER friend. A friend of HER choice.

On the other hand, with my D kid, I tend to choose MY friends for him to spend time with. These are not HIS choice, though he always has a blast with them. Sending him off with a friend of HIS choice would scare me to no end.

I am sure there there will be a day that he wants to choose who he hangs out with.

Until then, I am SO thankful to have some friends that he loves too.

Wednesday, August 17, 2011

The results are in...

I called the rheumatology office earlier today and then anxiously waited for the call back from the doctor.

All labs came back "normal". The only one to come back abnormal was the ANA screening. This is the same one that initially came back positive and started this journey. She said it came back with a higher tiger than before. And she will be mailing me a copy of the results so I can see them.

Then she brought up something interesting. She mentioned the fact that The Princess has has a few IVIG treatments. Those are made up of immunoglobins from donors. Lots of donors. Donors that could potentially be positive for ANA tests. Her thought is that The Princess could just be showing positive due to some donor who is positive.

I asked how long she would need to go without IVIG in order to get a true measurement of her ANA. She said it would take 3-4 months to see true results without IVIG. So far we have only gone 3 weeks from treatment 1 to treatment 2. And 2 months between treatments 2 and 3.

And she is looking pretty bruised again. We are 3 weeks post treatment this time around. I am going to take her for lab work soon to see how much she dropped from last week.

So, we watch and wait. If the ITP is still around at 6 months post dx, which will be in October, then I will lean toward a true positive ANA. We will just keep an eye on her and see how things go.

The results from today give me HOPE. And I like hope.

Sunday, August 14, 2011

No news is ... no news.

Just wanted to update you all really quick.

We took The Princess to her hematology and rheumatology appointments on Thursday.

I am SO thankful that Wendy mentioned having ANY lab work done with the same poke. The Princess woke up saying "No poke me!". When we went into our exam room at the hematology appointment I asked if they could talk with Rheumatology to see what labs they might want. They agreed that one poke would be best for her, and took care of getting the orders faxed over from the other building. So, we had ONE poke with FIVE vials of blood.

And thankfully, her platelets are UP still from the last round of IVIG. Her count was 127,000. We are hoping they stay up for a long while this time around. She follows up there again on the 30th of this month.

Then we wasted the day doing some shopping and having lunch with my mom. Then we rushed back to the children's hospital for the Rheuma appointment.

Part of the lab work requested earlier in the morning was to have The Princess pee in a cup. Yeah, that didn't happen. I tried and tried and tried. She wanted NOTHING to do with the darn cup. And at one point I had a very small amount collected and she decided to hold the cup herself. I thought this would be good and maybe she would actually cooperate. Nope. She dumped the little bit I had in the cup. I am sure if they still decide they want to run a urine sample we will try again, or just cath her!

Anyway, back to the appointment... The doctor came in and we went over The Princess' entire medical history. With a positive ANA screening, which was the test we did at the peds office, there is a chance she will develop Lupus. However, some people (I think she said 30%) test positive for the ANA test and never develop Lupus. Since we have other autoimmunity in the family (The Superhero), she will want to follow the Princess about every 6 months regardless of how the rest of the tests come out.

We are still waiting for the rest of the lab results. I am not even sure what tests she ran, but we will know more this week. She said we should have the results by Monday.

If all tests come back ok, then we will assume that for now The Princess does not have Lupus. If any of the tests come back positive, I am not sure what we do next exactly since I don't know what she tested for.

If The Princess does in fact have Lupus at this time, we would start a steroid treatment. The doctor is REALLY hoping we don't have to do this since the Princess is SO young. We are hoping the same.

Anyway, that is the update for today. No news is no news this time around.

I will do my best to update as soon as I get the results this week.

Wednesday, August 10, 2011

Big day tomorrow...

After my post yesterday, and lots of thinking and worrying I decided to try to get The Princess in with the Rheumatologist sooner if they had any cancellations.

I was fortunate that when I called this morning they were able to get her in tomorrow afternoon at 2pm.

So, now we have Hematology at 10am and Rheumatology at 2pm. With some shopping at the mall in between. :-)

I will update when we know more.

For now, I leave you with this sweet, sweet face.

I hate that she has to go through any more medical anything, but she does it all like it is no big deal to her.

Amazing.

(another huge THANK YOU to the Small Acts of Kindness quilt group at New Life Community Church, she is in LOVE and carries her quilt every where, even when it is 100+ degrees outside)

***And a HUGE thank you to everyone who has commented on the blog or on FB. I appreciate all the thoughts and prayers being sent for The Princess and our family. You all mean more to me than you could possibly know. ***

Tuesday, August 9, 2011

Just one more thing, again?

Yep, it appears we have added ONE MORE THING to our plate. I am still trying to figure this one out.

During my back to school teacher meeting a couple of weeks ago I was explaining ITP to a co-worker. Another co-worker/friend overheard our conversation and asked if I had ever tested The Princess for Lupus. Her husband has Lupus and has several of the "issues" that The Princess has.

I brushed it off a little since we had back to school meetings and start of the school year craziness going on. Later that week I started thinking about and researching a little more into all of the "issues" The Princess deals with.

Could her low platelets be related to Lupus? Yes.

Could her odd breathing be related to Lupus? Yes.

Could her leg pain be related to Lupus? Yes.

Could her dysphagia be related to Lupus? Yes, apparently so.

Could her restlessness and seemingly lack of restful sleep for her entire life be related to Lupus? YES.

Could the fact that she FREAKS out when it is bright outside (Hello, AZ!) be related to Lupus? YES.

Even after reading all that I read, I did not think it could be possible. She seemed to have several of the "possible symptoms" of Lupus. All of those things combined point to Lupus. So, what is a worried mama to do? Take her in for blood work, of course.

Last Tuesday the 2nd I took her in to her pediatrician. I explained my new theory and since she knows us well, she did not question me asking her to test for Lupus. The nurse came in and drew the blood. We would have to wait about a week for the results.

Over the following weekend, while still waiting for the results I thought about it A LOT. We spent about an hour outside on Friday night while The Superhero had soccer camp. It was HOT. Hot is an understatement. It is August in AZ after all. The Princess DID NOT want to be outside AT ALL. She kept saying she wanted to leave. Then we went for ice cream afterward and she just sat there. It was very strange for her to just sit there. Staring into space. Not interested in her pink sherbert. Just not herself. It was weird. Photosensitivity, perhaps? Ugh.

The weekend came and went. Then it was Monday. I decided to call the peds office and see if the results were in yet. I knew it was almost a week, but not quite, so I might have to wait. The results were in. BUT, no one in the office that day could "interpret" the results until the next morning.

Ugh.

Then today both kids were acting "off" and our friend's kiddos all have strep throat. I decided to take mine in for throat swabs. Thankfully that was negative.

While we were there, I asked about her lab results. Our doctor is out of town. Our Nurse Practitioner was not there. Our normal nurse was also not there. The med student, who was working today with a different nurse pract. came in. She basically said "I have the results. They are positive. Are you seeing a rheumatologist?"

Um, NO.

"Well, we are not sure what the next steps should be. Dr. F. usually sees her and knows her history, you should just follow up with her when she gets back next week. Would you like a copy of the results?"

Um, yes, I want the results. I will call a specialist myself!

I LOVE our docs office, but really, this was the worst experience when telling me lab results today. It did not make me feel better.

Before completely losing it, I called Wendy on my way out of the office. She is really good and helping me stay focused and not freak out. :-) (Thanks, Wendy!)

I then drove over to my mom's house. When I got there I looked up the number to the PCH rheumatology office and chose a doctor, then called and made an appointment for next Tuesday.

So, now we wait. I am anxious to see what they say about her results. I am anxious to know what our next steps will be. I am doing my best to have Faith that all of this is for a reason. Today I am struggling with this and all the "why us" questions. It will get better. It has to.

I will update next week. We see the hematologist on Thursday and the Rheumatologist on Tuesday. I am sure I will more than enough to say again after both appointments.

For now, I will just go off and cry. Sigh.

Thursday, July 28, 2011

A Quick Update

Went downtown early this morning for the swallow study and hematologist appointments for The Princess.

She went into the radiology room for the swallow test and freaked out a little thinking they were going to poke her. Once I explained that they were not poking her, she was ok. She drank/ate her "barium" mixes and was done pretty quickly. Unfortunately, nothing has changed. She still swallows thinner liquids and some goes toward her lungs. Not good.

She should have outgrown the swallowing difficulties by her age. Since she has not, we can wait it out and just do the re-check in 6 months. Or we can try a stimulation therapy, which has been proven to strengthen the muscles and retrain the body to swallow correctly. We would have to go for therapy 4-5 times weekly for 6 weeks or so.

At this point, I have no idea what we are going to do. I will talk to her pulmonologist next month and see what she thinks.

Once all that was over, we headed over the the hematology office. They drew her blood and she got her prize/stickers. Sad to say, her platelet count was down to 13,000.

Sigh.

We had the same options we always do, watch and wait or treat with IVIG. We chose IVIG this time since she will be starting at the daycare 3x per week next week.

Since it was still morning, we went ahead and stayed today for the treatment rather than coming back tomorrow.

We were lucky enough to have an amazing person come put her IV in this time around. He got it in on the first try and she did NOT cry AT ALL! I was impressed and will totally request him if we need another one! Best IV experience EVER.

Then on to the infusion area. She got all hooked up, got some snacks, filled her drink up, and started a movie. Then benedryl and tylenol were given. And after a while she fell asleep. She was more restless this time around. I am not sure if she just wasn't feeling great, was over tired from being up early today, or if it was all the noise in the clinic today. She ended up sleeping for most of the treatment and woke up at the end to watch more Cinderella.

We are home now and she is watching Tinker Bell. Dinner will be here soon and then off to bed for both of us!

I will be pre-empting the side effects we had the first time she had IVIG, and starting Zofran and Tylenol with codeine tonight before bed.

Thank you all for your thoughts, prayers, and messages. I am so thankful for the support of all of my friends and family!

(also, I cancelled The Superhero's pulm. appt. and will re-schedule it soon)

Wednesday, July 27, 2011

Tomorrow's the day...

The Princess has two appointments on Thursday and The Superhero has one appointment as well.

We go down to the children's hospital bright and early for her modified barium study. Then we have her hematology appointment. Then in the afternoon, The Superhero has a pulm. appointment.

We are hoping and praying for a few things...

1) The Princess to have outgrown this swallowing disorder. I am tired of mixing gel into her liquids. And I am sure she is tired of drinking them.

2) Higher platelet counts. She is still bruised, though not nearly as much as last week. So I have hope that they have gone up enough to avoid an IVIG treatment. I really hate putting her through that.

3) Praying for answers as to why The Superhero has had croup so many times. Is it asthma? And should we be doing anything different?

I will update FB throughout the day and the blog either in the evening or by Friday morning.

Thank you all for your thoughts and prayers.

Saturday, July 23, 2011

Completely WIPED.

This is how I am feeling these days. Wiped. Drained. Exhausted. Burned out. Tired. You get it, right?

Maybe it is the 100+ degree weather we have in AZ for MONTHS on end this time of year.

Maybe it is living in this tiny apartment day in and day out with 2 small kids. Thank God we are MOVING soon. Can't wait to have more space.

Maybe it is that 4 weeks off from work was just not quite enough this year. School is about to start again and we, as teachers, have to come back a few weeks earlier than the students. And in virtual teaching job, we do NOT get the whole summer, just 4 weeks.

Maybe it is the endless doctor appointments I feel like our lives are consumed with.

Maybe it is that I have no idea how I am going to work with 2 kids home this year. The Superhero will be in pre-school, but it is only 1/2 days 4x per week. With the Princess and her ITP, I just have a hard time sending her to daycare. Plus the cost of daycare adds up. I will probably have to take it one week at a time. I am hoping to put her in at least 3-4 days per week for the first month or so of the school year. This would be a huge help to me and she would have a great time. I know the daycare will take great care of her, I would still be nervous though.

Maybe it is that my husband works SEVEN days per week. Weekdays at one job and the weekends at another. He is home for a few hours each day. And that is all. We miss having him home. But, for now, this is how it is going to continue.

Maybe it is that I almost never sleep through a night without a crying 2 year old joining me in my bed. She has NEVER slept through the night more than 10 times in her whole life and I am WORN OUT.

Not to mention the other kiddo with T1 Diabetes and it's constant care. Fortunately my awesome husband takes the night shift on this one.

Maybe it is a combination of EVERYHING.

Whatever it is, I am hoping to be "normal" again soon. I am usually the one who sees positive in everything negative. And it is true, there are positive things that can be seen from all of the above, but all I see today is gray clouds. I know they will go away at some point, but right now, I am just WIPED.

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