Platelet Update

Kaylee and I made a visit to the hematologist yesterday.

I was a bit concerned about this visit. She has had 2 small nosebleeds since our last visit, so I was quite unsure of what the outcome would be.

She is not the trooper that she used to be. She is old enough now to know that this hurts. She used to offer her index finger and bravely take the stick. Not so much any more...hides her hands and screams at the appropriate time. I don't blame her, I would too. I just think it is interesting that she used to take it in stride and now it is a meltdown.

Anyway, on to the news...her platelets were 149,000! This is HUGE! Her 'normal' is about 32,000. These results are WITHOUT STEROIDS! She hasn't had steroids in well over 6 months!

What does this mean? I don't know exactly...but...it means, in part, that her body is either making more platelets or her spleen has stopped destroying what she does have.

It's amazing, really.

Keep praying for my girl, her spleen and her platelets. We are not out of the woods. However, we do not go back to the hematologist for 8 weeks!

Amazing!

3rd Diagnosis...

Today was a regular visit to the hemotologist.

Kaylee has done so well in this area...until today. Today, she wakes up with petechia and has a nose bleed. UGH!

So, we get to his office and he looks at me and says, 'She's a mess!'

We discuss her issues today and I brought up her hives. The longer we talked and the more questions he asked, he determined that she has serum sickness and a sinus infection.

The rash, the cough (this started last Wednesday), the low platelets (yup, low number today) are all part of the serum sickness.

My poor girl...just when we are starting to see the light at the end of tunnel...

It's Hives!

Well, the saga continues...

The rash was NOT from the antibiotic...

She has hives. The pediatrician says it is a 'biproduct' of her platelet issues.

We see the hemotologist on Monday.

I will let you know.

Another Med She Can't Have

Last week, Kaylee complained that it hurt to go pee-pee. So, I took her to the doctor. She has a UTI and was given an anti-biotic.

Yesterday, I noticed a little welt and redness on Kaylee's cheek. Then, a while later, that cheek was cleared up and then the other was broken out...then, back to the other cheek. This happened on and off last night and most of the day today. So, I took Kaylee to the urgent care clinic.

After 3 hours in the place, we saw the Dr. (who is the father of one of my former 2nd graders - that 2nd grader is now a senior at A&M). The Dr confirmed my suspicion...she is allergic to her antibiotic!

I am going to need a book in order to write down the medicines that this girl CANNOT have!

Passed with Flying Colors

Kaylee made her first trip to the dentist this week.

She did remarkably well!

She let them count her teeth and polish her teeth.

She was a big girl...part of that may have been that she got to watch Dora and Kai Lan while lying in the chair. :)

What a bave monkey she was!

Newest Medical Update

Kaylee recent had a cardiologist appointment to check her murmur.

Once again, because we have no family history, they wanted to do a full set of tests.

They found that her murmur is innocent!

Woo-Hoo!! Thank you Jesus!

New Medic Alert Bracelet

I had a conversation with a doctor a few weeks back where he stated that kaylee should be wearing a medic alert bracelet. I had given this some thought before but was lacking in footwork.

Well, I found out that 'Transplants for Children' gives free bracelets to children in need.

So, I called them and got it taken of.

Here is the photo of my beautiful girls wrist with her bracelet on it :)

Platelet Update

I haven't posted about this in awhile, but it has been in the forefront lately, so I thought I hsould update everyone.

Kaylee has started a new Sunday School Class and will be starting MDO on Tuesday.

The question I have gotten from both of her teachers is, 'What do we need to know about Kaylee?'

I discussed the platelets with both teachers. Their response is, 'Oh, so we need to call you right away if there is an accident.'

To which I respond, 'Call 9-1-1 first and then call me.'

'Oh, that bad, huh?', was the response of both teachers.

Lately, the platelets have been on the rise. The last 2 doctor visits, she was 171,000. That is fabulous for our little monkey!

We have been doing a 2cc, every 3 day regimin. We will continue to do this and go back to the doctor in 6 weeks instead of 3!

Could we possibly be on the other side of this?

Keep praying!

Thankful for MDO

If you read this post, you know that we had a petechia issue this week.

What you don't know is how thankful I am for Kaylee's Mother's Day Out teacher...

When I dropped Kaylee off at MDO on Tuesday, I took her in and let her teacher know that the rash on her neck was not contagious but that it was from her blood disorder. The teacher stated, 'Oh, it's petechia?' I know I must have given her the strangest look, but I was shocked that she knew the word, much less the disorder.

I left Kaylee and went to work.

Throughout the day, I kept thinking about her teacher knowing that word.

When I returned to pick her up, I asked her how she knew that word (after all, I never use that word because I usually have to explain to people what it is) and she stated that she is a nursing student!

I am so blessed that God chose her to be Kaylee's teacher for the summer!

Latest Platelet Count

Went for a check-up today..

151,000!

Woo-Hoo!!!

Praise the Lord!

I just received the call I have been waiting for...the hemotologist's office called to let us know that the 2 tests from yesterday came back normal!

Normal spleen, no masses in her chest!

What does this mean? We will act as normal. We will go in for blood checks (about every 2 weeks). If her platelets are above 20,000 and she has had no accidents that cause injuries, we do nothing. If either of the prior happen, we do a round of steroids to boost the platelets.

We are praising God that she is fine. We know that He is the Great Physician and has chosen this path for our daughter.

Please offer prayers of thanksgiving to our Great Creator!

Bring on the Steroids!

Today was another follow-up visit with the hemotologist.

As you may remember from the last post, we had a 5 day, twice a day, steroid regimine. The doctor wanted to know if her body would respond to steroids. Well, IT DID! Her platelet count today was 128,000!!!

Woo Hoo!!!!

What's next? The doctor, although he truly believes this is ITP, wants to continue with the 2 scheduled tests (Thursday). If those both come back negative, we watch Kaylee. If she stays where she is normally (in the 40,000) and has no accidents, we do nothing. If her platelets fall below 20,000 or she has an accident that results in injury, we will use steroids to boot her platelets and help get her healthy.

I cannot begin to explain how thrilled I am about her body responding to these steroids!

Thanks for your prayers!

More Blood, Please!

We went back to the hemotologist today for a check-up.

They did a finger prick for a blood draw. Kaylee's plateles continue to be in the 40,000s. She had a count of 43,000 today. She likes the 40s!

Dr. Patel shared a bit of information from the research he did this week. When he did the blood draw last week, he tested that blood in 18 different ways. He tested thyroid, endocrine, mycoplasma (walking pheumonia), rheumatoids, liver function, anemia, lupas, on and on and on!

Here's what he found...NOTHING! Everything came back negative! Although this is very frustrating, it is also a HUGE PRAISE THE LORD! She has nothing!

Actually, he did find one thing...he found that there was Human Herpesvirus 6 in her blood. This is, most likely, the virus that triggered this ITP. The doctor explained to me that this virus bonds itself to the platelets and therefore, the spleen destroys these platelets. This virus is no longer in her body (how they can look at blood and determine that is was there but is no longer is amazing to me!).

So, what now?

We are going to first do a round of steroids...5 days/twice a day. He says these will make her hungry and irritable! That ought to be fun! Then, we will go in next Monday and determine if the steroids helped boot her platelets. Next, we will continue with the 2 tests already scheduled. He is sure it is ITP, but wants to put all other 'what ifs' to rest.

All this to say 2 things:

1. God is good! Our little girl is, for the most part, disease free.

2. Please keep praying. I suppose there is still a small chance that this is not ITP. The tests could reveal a mass in her abdomen or an enlarged spleen.

Thanks for checking on our precious girl. We will let you know more news as it becomes available!

Waiting...

The tests are scheduled for January 24th. It seems that David will be in Chicago for work...UGH!

Maybe I can get my mother-in-law to go with me :).

Please pray!

Massive Nose Bleeds and Doctor Visits

Well, in the last month or so, Kaylee has had 2 massive nose bleeds.

After the first one, I thought, "That was odd. I guess I need to watch her and see what happens."

After the second one, I thought, "Yup...I will me making an appointment with the doctor."

So, of we went to see our pediatrician. He didn't seem bothered by the nose bleeds. He told us to get a humidifier and use some saline spray. Then, kind of off the cuff, he decided to run some tests...because we don't know any family history.

Then, a few days later, we get the results, that our pediatrician thought was a mistake. Low platelets, but red and white counts are fine. He thought the lab had let the blood clot before running the tests. So, let's do them again...

Then, a few days later, we get results again. Low platelets...everything else is fine.

So, the pediatrician calls us back to his office. He basically lets us know that this condition, ITP, was probably triggered by her RSV. The body started by attacking the virus and then began to attack itself. He also refered us to a hemotologist to see what the plan of action will be.

We will be going there tomorrow. We will keep you informed...

*UPDATE: After the appointment today, the Dr. wants to run some more tests to determine the cause of the low platelets. We will do an ultrasound of her abdomen to determine whether or not her spleen is enlarged and a chest x-ray to determine if there are any masses. These tests have not been scheduled yet. Please pray for God's hand in this process.

Be Careful What You Pray For...

Remember when we were praying for poop?

Well, those days are over! Kaylee has no elimination problems now!

As a matter of fact, she has discovered it!

Last Tuesday morning, I went in to get her ready for our day, and she was COVERED IN POO!! Yes, covered! It was obvious from the hand prints everywhere that she had put her hand in her diaper. UGH!

So, she has had diarrhea since. I believe she sucked her thumb with the fecal matter on it (I know, more than you wanted to know!).

So, yesterday things begin to firm up and I am starting to feel like this is going to pass...after all, we have ruined more outfits than I can remember!

Then...today...I go in to get her from nap and once again, she is COVERED!!! Bed is covered, onsie is covered, legs are covered and, yep, hand is covered! I have given her a bath and yet, she still has an odor!

In the back of my head, I hear my step-mom saying, 'Be careful what you pray for!' :)

A Virus

Well, Monday night, Kaylee was running a fever of 102.6. She and Mommy had a sleepless night on the futon together! We hurried to the doctor Tuesday morning. Our new pediatrician (remember this) did a bunch of testing...red throat=strep test, negative...diarrhea=urine test (yes, they had to extract the urine!), negative for UTI...but we will send it to the lab just to make sure! So, after much medical jargon and his talking-so-fast-that-my-ears-hurt, we left his office with 'a virus'!

I HATE 'a virus'.

It basically means, 'Watch my child suffer and do nothing about it'.

Now, the fever is over and she is covered in a rash (another symptom of a virus, in case you were unaware - rash after fever).

So...we must be about to end this sickness!

Good timing, because we are going here next week.