Tuesday, May 31, 2011

A Birthday Party With Two Views

Yesterday we attended my nephew's 7th birthday party at a local pizza place. After it was over and we were back home I started thinking about how the whole evening must have looked so much different from everyone else's point of view. So of course, I decided to blog it.

My perception of the view from the outside (in this case, my Sister In Law, Mother In Law, and Father In Law)...

"This party was supposed to start at 5:30pm. I wonder where Rod and Tracy are. It is almost 6 and they are not here yet."

"I am so glad we found a cake with the carb count on the package for The Superhero"

"Didn't she already check his blood sugar?"

"He's high? How high? Why is he so high? They must not be doing a great job with managing his disease"

"He's still high? What?"

"Oh, yes, we can do the cake now that The Superhero is "crashing" as you say, but let me fill up the drinks first and let me get the candle off the floor and all these other things that probably could have waited, but I want to do before we cut the cake"

"Why are you 'guessing' the carbs, the count is on the package, I don't get it"

"You are checking him, again?"

"Thank goodness this is over! I am so tired and can't wait to get some sleep tonight!"

And the party from MY view...

"Ah crap, HIGH, where did this come from?! We better do a site change before we leave to rule that out. Especially since we are having PIZZA and CAKE."

"We are going to be late, darn site change!"

"We made it! Time for another BG check. STILL high?! Over 400, this stinks. We have to get him down before he can eat that pizza and cake!"

"Pizza time...BG still over 400...bolus for the pizza and BG and move on."

"Time for another BG check...195 with how much on board? Ah crap! Time for cake"

"I better round everyone up to get some cake in this kid!"

"What is taking them SO long to get over here, he needs something NOW"

"Ugh, 54 carbs per serving, let's give him less than 1 piece of cake, that is A LOT of carbs. I will guess THAT piece is about 35ish carbs, I will let him have it free"

"BG check before we leave...hitting 200's again...climbing the WHOLE way home"

"Looks like another night of NO sleep in our house. Love going to parties filled with cake and pizza"

Thank goodness we survived another birthday party with a HIGH starting BG. So not fun!

Glad my kids (D kid included) could have their cake and eat it too!

Definitely some YUMMY cake!

*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.*

Sunday, May 29, 2011

"I swimming, Mommy!"

A couple of weeks ago the kids and I decided to go swimming at the main pool in our apartment complex.

I like this pool because it has a BIG step for The Superhero to "hang out" on. He is not big into getting his face wet and is very timid around water. (or at least he was)

The Princess on the other hand is a FISH. And, she thinks she can swim. She just jumps off the steps or edge of the pool into open water and just assumes she will be ok.

This particular Saturday she was supposed to dive TOWARD me and instead she went to my right, into open water. When I pulled her up I asked her "What were you thinking", her response was "I swimming, Mommy!" As if she REALLY thought she was actually swimming.

Thank goodness I already had signed both kids up for swim class. We just had to wait for them to start. The Superhero was signed up for a group class, no more than 4 kids in the class. The Princess is not old enough for the group class, unless I want to join her in the water. Last year, I did join her in the water and we both learned a lot. This year, I wanted someone else to teach her. I thought she would get more out of the class if she wasn't constantly telling ME no. I ended up signing her up for the semi-private class which has a maximum of 2 kids.

We had our first class on Friday and I have to say I am SUPER impressed with BOTH kids! They did so amazingly well. The Superhero picked up right where he left off last year. And he even floated on his back! He would not do that last year, at least not easily. He got to wear flippers and had a GREAT time. He did tell me that he hate being put under water. He said "She put me under the water! She shouldn't DO THAT!" He was not happy about that part, but I did explain to him that it was her JOB to put him under water and teach him how to swim. He got over it quickly though.

The Princess. Oh, The Princess. She was beyond impressive. She ended up being the ONLY kid in her "class" and got 30 minutes of 1 on 1 attention, which she loves. She was swimming back to the wall in no time. She still did not want to float on her back, but is making progress from last year. She was such a little fish in the water!

After class we went to my parents' house to swim again and both kids enjoyed showing off their skills. Then on Saturday, we went swimming at my parents' again. Just one day later and the kids were doing even better than the day before! The Princess was using JUST the pool noodle to hold herself up and The Superhero wasn't far behind learning this skill. Then we practiced swimming without the noodle too, and they both were just amazing.

I can't believe how much progress they have made in such a short time! I am so impressed and proud of them both.

And now, instead of drowning herself, The Princess actually IS swimming! She keeps saying "I swimming! I doing it!"

Yes, yes you are.

*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.*

Monday, May 23, 2011

What I have learned about ITP so far...

Since The Princess was diagnosed with ITP in April, I have received many questions about the disease. I have learned A LOT in the short 4 weeks since her diagnosis. I thought I would put together a post here all about ITP and what I have learned so far. If you have any other questions after this post, please ask away!

Starting with some internet facts, the following is copied from ITP Kids...

What is ITP?

ITP stands for Immune (also referred to as idiopathic) Thrombocytopenic (a decreased platelet number) Purpura (purplish areas of skin and mucous membranes).
You may also hear the term "Idiopathic" Thrombocytopenic Purpura which means the cause of the low platelets is unknown.
ITP occurs when a person makes antiplatelet antibodies which attach to his/her own platelets. The antibodies cause the immune system to destroy the platelets. This results in a decrease in the platelet count.

(My note: Yep, it is autoimmune, like Diabetes)

What are platelets?

Platelets are the blood cells that help form clots to stop bleeding. A blood test is done to count the number of platelets you /your child has.

A normal platelet count is higher than 150,000/mm3.Hematologists generally agree that platelet counts: higher than 100,000/mm3 are always safe, higher than 30,000/mm3 are nearly always safe, and lower than 10,000/mm3 may be associated with an increased risk of bleeding.

(My note: The Princess had counts of 6,000 and 2,000 the week of her dx and 12,000 this past week)

Why would you treat ITP?

The main reason to treat ITP is to keep you/your child's platelet count in a safe range so that the risk of bleeding is minimized. Platelet counts lower than 10,000 may increase the risk of bleeding. Therapy temporarily raises the platelet count to minimize the bleeding risk.

(My note: We choose to treat because The Princess is a VERY active toddler and would have a greater risk of bleeding should an injury occur)

And now what I have learned so far...

The treatment options WE are offered from our doctor as options to treat The Princess.

1) Observation...This would just be a watch and wait approach. Weekly blood checks and decisions based on the count each week.

2) Steroids...We could put The Princess on steroids to increase platelets while she is taking them. There are two problems with steroids though (mainly)...1) Steroids can have some yucky long-term effects and 2) The Princess is a complete MONSTER on steroids, and I just can't do that to her.

3) IVIG...This is a transfusion given over several hours of part of the plasma from a donor. As we know, side effects can be nasty and include headache, vomiting, nausea, fever, and could include kidney failure. (The Princess experienced most of these on her first round; we pre-medicated the second time around and have avoided these side effects) This treatment works in about 80-85% of the patients treated to temporarily raise platelets. This treatment can last from 2-4 weeks before platelets would drop again. It appears it lasted about 2 1/2 weeks for The Princess from her first treatment.

4) WinRho...This is another treatment given via transfusion over about 30-60 minutes and for our clinic would require us to stay the entire day (7:30am-4:30pm or so) due to the possible side effect of developing severe anemia. We were told this treatment works in about 80-85% of patients to raise platelets temporarily. We have thought about this one, but the idea of possible anemia scares the crap our of me (would mean a blood transfusion on top of everything else) and it may not even work.

5) Splenectomy...Removal of the spleen is an option patients who have had ITP for a long time might consider. This will not work for everyone and the risk of infection down the road is greater.

The fact is the platelets are low. Any "treatment" that would raise platelets would be temporary until the body stops attacking itself at some point. The treatments are seen as a bandaid and only last a few weeks at a time.

At this time, The Princess is considered to have "acute ITP". This means she has had ITP for less than 6 months.

If she still has ITP after 6 months it will be considered "chronic ITP". I have been told that 80% of kids will go into remission within 6 months. I am still praying and holding out hope that happens, and sooner than 6 months would be fantastic.

And lastly, for now, I want you to all know that I am doing my best to get through the dx of another autoimmune disease, and let me tell you this SUCKS.

I am constantly worried about her platelets being too low. I cry every time I think about all her bruises. And the fact that just by touching her we are causing some/a lot of them. I cry every time she gets lab work and has to be poked. I cry every time they have had to put an IV in, blow her veins, and have to keep repeating until they actually get it in. The night before her first IVIG I cried the whole night and the whole next morning. I was seriously scared of the unknown. The second round of IVIG this week, I knew mostly what to expect and I still woke up in the middle of the night and cried my eyes out. I hate that my baby has to go through this. It just plain sucks.

Yes, of course I am grateful it is not something like leukemia or cancer, but it still sucks.

The only reason I am surviving this right now is all of the love and support from my family and friends. The comments and concern shown for me and my Princess help me be ok with it. You all help me get through each doctor appointment and each transfusion.

The appointments and treatments already seem to feel like they are part of our routine and no big deal, even though they really are. I feel like we are living our lives 3 weeks at a time. And while I hope we don't have to do ANY more treatments, I am also trying not to get my hopes up. If we have to endure this for several months, I need to be ok with it, or I will just fall apart.

I have to add, SHE makes it all worth it too...

*Disclaimer: I am a mom of a T1 Diabetic child. 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.*

Sunday, May 22, 2011

All About Us Kids

When The Princess went in for her first IVIG, and then went back to the clinic the following day, we had the opportunity to hear about a wonderful non-profit organization.

While we were back in the clinic a volunteer from All About Us Kids came through the infusion area.

The Princess was too sick to care on this day, but the volunteer gave us her goody bag filled with fun things. (crayons, paper, etc). The Princess was given a little t-shirt from All About Us Kids. They offer to paint little finger nails and toe nails. They also offer the mom's a hand massage and a little goody bag as well (lipstick, lotion, and a mirror).

The Princess did not get her nails painted on this day since she was too out of it.

Turns out they are there every Thursday.

So when we went back for her IVIG this week, she was able to get her finger nails and toe nails painted and she LOVED it.

Jen (the volunteer) was so good with her and The Princess was in Heaven. Jen put a pink butterfly on each big toe.

The whole rest of the day, and even still, The Princess likes to show off her fingers and toes to everyone.

This organization, and the volunteers are truly making a difference in the little girls' lives they touch each week.

I just want to say a HUGE THANK YOU to Jen and the whole organization.

Please check out their website HERE and go "like" their Facebook page HERE.

Here are a couple of pictures of The Princess. The first one getting her manicure, after the pedicure was done. And the other picture of her pretty toes with butterflies.

Thank you, thank you, thank you, for making 
my Princess feel SO special!

*Disclaimer: I am a mom of a T1 Diabetic child. 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.*

Saturday, May 21, 2011

We did it!

We seemed to have BEAT the side effects! Woo Hoo!

After The Princess had her first IVIG treatment on April 27th she got VERY sick. I posted HERE about her side effects.

When we went to her appointment this week, I was pretty sure her platelets were back down since she was starting to bruise again. She also had lots of Petechiae spots (small, reddish-purple spots that look like a rash, but are not raised). So, while I had hoped of a higher count since her IVIG was 3 weeks prior, her actual count was down to 12,000.

We chose to do another round of IVIG, even knowing the side effects. This time though, I made the decision to "treat" the side effects before we noticed them.

We went in for the IVIG on Thursday. She did amazingly well again. It took 3 tries to get the IV in this time around, since people with ITP have fragile veins. The first two "blew" and the nurse would not try more than 2 times. I will say, The Princess fought this time more than previously and her crying made me so sad.

The nurse called for the IV "team" from the hospital. We waited about 1 hour before the "team" came in. The "team when The Superhero was dx with Diabetes consisted of about 3-4 people. This is what I expected when they told me the "team" was coming. Fortunately, this time around "team" just meant ONE person and our new favorite transfusion nurse, Chris. Chris did a great job wrapping The Princess in a blanket so she could not move her arms and legs, and the IV "team" nurse went for it. One try and the IV was in.

Once The Princess was hooked up, it took about 3 hours for the treatment. I was lucky to get a lot of work done during this time while The Princess slept the day away. (thank God for Benedryl!) She did get a manicure and pedicure before snoozing though. (I will post about that another day)

When the treatment was over, her IV was removed and we were sent home. Around dinner time I decided to start giving her the Tylenol with codeine and the Zofran. We continued to give her both of those medicines throughout the night (as prescribed) and added in Motrin in the morning.

Typically, with low platelets, people with ITP cannot use Motrin since it affects how the blood works. Since we know the IVIG works fairly quickly for The Princess, we decided to add it in the next day to help fight the possible fever.

We made it through the first night with NO vomiting! Woo Hoo! She did toss and turn more than normal. She whimpered in her sleep too. I was up for 2 hours just waiting for the vomiting that never came. And we made it.

Then yesterday, I kept her medicated again. And again last night. She tossed and turned again. She started saying that her head hurts. I am sure it is not as bad as if the side effects were full force.

So, after almost 2 days post IVIG I am SUPER happy to announce, that WE BEAT THE SIDE EFFECTS!

This was HUGE for all of us. This helps me as we move forward with her ITP and possible future treatments.

I am working on another post to explain more about ITP. For now though, please keep praying she goes into remission SOON. Please pray that we won't need too many of these treatments. And please pray we can keep beating the side effects with each treatment.

*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.*

Wednesday, May 18, 2011

A few updates...

I hope all of my friends in blogland are doing well. I am really missing blogging and reading blogs, life is just getting in the way right now.

Here are a few updates on our family...

1) The IVIG treatment we did 3 weeks ago was successful. After 1 week The Princess' platelets were up to 230,000. She did have many of the possible side effects, but did recover within a few days.

2) We went to Disneyland. My parents, my brother, his girlfriend, and her son all joined us. It was AMAZING. We celebrated my birthday, my brother's birthday, and Mother's Day all in one weekend of fun.

3) I turned 30. I am officially a "grown up". 

4) I have signed The Superhero up for SOCCER. I am not quite sure about this one yet, but it IS happening. Should be interesting.

5) The Superhero is signed up for pre-school for next year. He will be at the same school as this year, with the same Awesome nurse. This makes me happy.

6) Friday is the LAST day of school for this year. I work until June 15th, but won't have students assigned after Friday. I am SO ready for a break right now.

7) The Superhero just had a tummy bug. Typically I see these coming with lows for days ahead of time. Not this one. It came out of nowhere. Fortunately, (sort of), this one came with higher BG's instead of low ones, at least at first. And we were able to manage it at home. This is our first tummy bug since dx that has not landed us back in the hospital. I am very proud of that. Especially since the first thing he said (as he was throwing up) was "I don't want to go to the hospital". Broke my heart. He is doing a TON better today.

8) The Princess had her follow up hematologist appointment today. It has been 3 weeks since her first IVIG. She started bruising again over the weekend, so I had a strong feeling her platelets had dropped again. They did. 12,000. We are scheduled for another IVIG treatment tomorrow. I will post more about ITP, IVIG, and what I have learned so far in another post. --- She will go in for her treatment tomorrow and we are hoping to medicate her before the side effects kick in during the night. And since we know the treatment "works", we don't have to go back for 3 weeks for blood work.

Well, that is what we have been up to. :-) I can't wait to get some time to myself this summer so I can catch up with all of you!

*Disclaimer: I am a mom of a T1 Diabetic child. 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.*
Related Posts with Thumbnails