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)


*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, 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.


*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.*

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.



*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.*

A Princess Update

The Princess, oh The Princess.

She is going in for another modified barium swallow on Thursday to see if she has outgrown her dysphagia. (crossing fingers, and toes!).

She also has her hematology appointment on Thursday.

I feel extremely burned out on this ITP crap.

I haven't updated much about this lately, because I am SO tired of it all.

I posted HERE about what I had learned about ITP so far. That was back in MAY. A lot has happened with her and her appointments since then.

She had her last IVIG in May and her counts went up a little  and then at her appointment 3 weeks post IVIG were around 33,000.

Then a week later they were 21,000.

Then another week later they were 19,000.

We were in "watch and wait" mode.

Those counts are LOW by normal means, but not quite low enough to put her through a treatment.

Then miraculously the week after they were UP to 65,000. We all thought she was making platelets on her own again and scheduled an appointment for 4 weeks later.

Only 2 weeks after that appointment she was covered in bruises again and I asked for labs to be drawn.

We were fortunate enough to have them send a lab order over to a local lab rather than have us come downtown. We drew labs last Monday and her count was down to 19,000.

I completely lost it when I heard that number. Not because I really thought they would be higher, I knew they wouldn't. But because this means she is probably NOT in remission yet. And it hurts me to know that this is not over.

Again, that is low but not enough to put her through a treatment.

We go back this Thursday. She is still pretty bruised. So I am anxious to see what her counts are this week.

I am tired of this disease taking up so much of our time. I am tired of this disease causing my 2 year old to need almost weekly lab work. I am tired of this disease running my/our lives. I am just tired.

Will update after her appointment on Thursday.

*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, July 10, 2011

3 years later...

3 years later...and we are still grieving. The stages of grief change over time and some days/weeks/months are harder than others. But we still grieve over our life with Diabetes.

3 years later...and we are still smiling. Sure we have our hard days, but we also have lots of good days and have learned to appreciate all the good things we have.

3 years later...and we are still learning. Sure, we have been managing this disease for 3 years now, but there is always something new to learn and something changing causing us to learn even more.

3 years later...and we are still grateful. So incredibly grateful that The Superhero is alive and well. Grateful for insulin. Grateful for the technology that allows us to manage this disease the best we can. And grateful for all the friends we have made along the way.

3 years later...and we are still sleep deprived. Diabetes has been known to cooperate and allow a night's sleep in 2-3 hour stretches. And also not cooperated and allowed a night's sleep in 1 hour or less stretches. We do whatever is necessary to keep him alive each and every night.

3 years later...and we are even closer as a family. I feel Rod and I know our kids and are much closer to them than we would be without Diabetes in our lives. We are also much closer to my parents than I ever thought we would need to be.

3 years later...and we are still scared. We try not to be scared all the time of course, but sometimes our emotions and the thoughts of "what if" get the better of us and we think about what could happen if we gave too much insulin, or not enough insulin, or what if he doesn't wake up this time. This is not all the time now, just sometimes these thoughts take over.

3 years later...and we are still hopeful. Hopeful that a CURE will come in The Superhero's life time. And until that cure, we will do everything possible to provide him the latest and greatest technology has to offer. We will continue fighting each and every day to keep him alive and healthy. And if the cure does not come in his lifetime, I only wish he can have the happiest and healthiest life possible!


And with that, I would like to wish my Superhero a Happy 3 Year Diaversary! I can't wait to celebrate your life being saved 3 years ago today!

Thank you to those of you we have known since the beginning and to those we have "met" along the way. I don't know where we would be without all of you!


Related Links:
The Superhero's Diagnosis story (age 18 months)
The Superhero's 1 Year Diaversary
The Superhero's 2 Year Diaversary (Part 1)
The superhero's 2 Year Diaversary (Part 2-the Celebration)


*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, July 4, 2011

Happy 4th of July!

As I was sitting looking at the pictures for this year of the kids all dressed in their red, white, and blue, I started thinking about the past several years.

The 4th of July that first came to mind was 2008. This was the holiday 6 days prior to The Superhero being dx with T1 Diabetes. Looking back at THAT picture and seeing how skinny my 18 month old was is breathtaking and scary.

I am SO thankful he is still here, alive and well with us to celebrate another year living with Diabetes. His Diaversary is next weekend and we will definitely be celebrating!

And instead of just sharing that ONE year with you, I pulled pictures of all of our 4th of July celebrations since Rod and I had the kids. Enjoy...











From our house to yours, Happy 4th of July!


*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, July 3, 2011

Recent nightly routine...

Last night I brought the kids home from dinner at my parents house. I got them in their PJ's and then started to get all of their medications together all at once. I usually just do them without thinking, but since I was on my own tonight (Rod was out with friends) I was trying to do it all at once.

That is when it hit me. My kids have A LOT of meds to take right now. This is crazy!


Here is a list of what is shown in the picture from last night...

1) The Princess' antibiotic for a sinus infection. She has about 3-4 days left.
2) Tylenol for The Princess. She also has an ear infection and was complaining of pain.
3) The spacer for The Princess' inhalers.
4) Singulair. This is for The Princess' asthma/allergies. She takes this once per day.
5) Ear drops. The Princess has a current ear infection (ear tubes + ear infection = leaky ear). Used once per day for 7 days.
6) Flovent. Used for The Princess' asthma, twice daily.
7) Albuterol. Also used for The Princess' asthma. Used as needed, latelty has been 2-3 times per day.
8) The Superhero's blood glucose meter. Of course we must check his BG before bed. :-)
9) Xopenex. Used for The Superhero's "croupy" cough lately. 2 or more times per day. Will be seeing a pulmonologist soon.
10) Pulmicort. Used 2x per day for The Superhero's coughing.
11) Container used to put breathing meds into, and then hooked up to the SVN machine.
12) Triaminic cough medicine. Has been helping reduce his cough.
13) Flonase. Nasal steroid for The Superhero. 2x per day.
14) Allegra for The Superhero's allergies.


Yep. This is what our life consists of. I never would have thought this is what our "nightly routine" would consist of.

So thankful I get to have a BREAK this week. Rod and I are going away KID FREE! And as much as I LOVE my kids, I just can't wait to get away!

*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.*
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