Where did summer go?

In record time, summer flew by and I find myself back at work. It was such a blessing to have all those weeks home with Cooper. I can’t complain, just wished I could stay home with her all year.

We had an exciting neutropenic summer. Cooper had 3 ER visits with one overnight stay. All three times she was running a fever over 101 with no other symptoms.

The first visit, her counts were 150. Normally the protocol is anything under 250 is an automatic stay overnight. However, since her fever had gone down, she was given antibiotics and we were sent home.

Almost a week later, she began running a fever again. This time her ANC was 1600. The doctor told us this was good news because obviously if she needs them, her neutrophils will be there. We were sent home after some antibiotics.

This past Friday, she was running a fever again. Her counts were 90, so we had to stay overnight. She was given IV antibiotics and we got a chest x-ray and blood cultures. Since they can not catheterize her, we got urine samples from cotton balls. They also did a flu test and RSV test. All came back normal, so we were released late afternoon.

Today she is ok, but did have a rash all over her body yesterday. Her doctor thinks it is related to whatever virus she had. I took this last visit pretty hard and feel so bad that my baby has to go through so many traumatizing events. I hope she will never remember all the pokes and shots.

The ironic thing, is that June 1st I started to transition my household to a more eco-friendly and organic home. Although I just think her illnesses were a coincidence, I feel a little silly. I am going to stick with it for now, and hope the long term effects of these changes will help Cooper.

19 months old

So on June 17th, Cooper was 19-months-old. An like usual, we celebrated by getting her blood drawn. To update you on the latest, we saw Dr. Beam at Cook’s in May. Cooper’s ANC was 30. So, we concluded that her elevated levels in April were from something she was fighting. Although her counts were only 30, the good news is that if she needs them, it looks like her neutrophils will be there. At this last appointment, Cooper’s ANC was 250. I was so excited on the phone when the nurse told me the results, only to be crushed by her reminding me that 250 is still very bad.

17 months old

Cooper is sleeping peacefully. It’s been two months since my last posted update. Cooper has been getting monthly blood draws at Quest Diagnostics here in Mansfield. Her counts last week were 564, the highest we’ve seen since November. In March, her counts were 120.

Needless to say, were were very excited about Cooper’s counts. Over 500 means she is no longer considered in extreme risk for infection. Unfortunately, she began getting a cold this week and was running a low fever today, so we are watching her closely.

I am hoping she just fights this without a high fever. But, if it doesn’t work out that way, Cooper may need to spend some time being monitored in the hospital.

Our bi-weekly checkup

Yesterday we were finally able to see Cooper’s hematologist. Our past visits were only with his nurse practitioner. It was good to ask him all of my crazy questions. It was the most productive visit we have has so far. Cooper’s ANC was still only 100. So it obviously fluctuates on a daily basis. The good thing is Cooper is totally healthy otherwise.

Ryan and I have been very protective of her and that’s the way things are going to stay for now. We are hoping by the summer we can start to take her out more when the weather is nice. We are just amazed at how happy Cooper is.

I learned it from watching you . . .

I am always amazed at how quickly Cooper picks up on the things that Ryan and I do. She can pretty much change out the DVDs in her playroom and work the tv and DVD player. She walks around telling Millie, our dog, “No no Millie”.  Well today, I was dusting the black furniture in our bedroom, which shows dust like crazy. I stopped to write the previous post. When I looked around at Cooper, she had picked up dusting where I left off.

Well, who says 14 months is too early for chores. The girl loves to dust.

No No Momma

We had our bi-weekly appointment with the hematologist on Friday. Cooper’s ANC was 20. Pretty pitiful. So again we are facing the harsh reality that this neutropenia is here for the long haul. I’ve joined a few online support groups and a few Facebook groups to talk with other parents about how they handle life with autoimmune neutropenia.

Everyday Cooper gets better at walking. I think before long she may be running everywhere. She’s always in a hurry and very busy. She is fascinated by cell phones, remote controls, and tvs. So we spend most of out time telling her “No No.” Which she now has begun to use against me saying, “no no momma.”

January 17, 2009 – 14 months old today

With everything that’s been going on lately, things have been almost totally sureal. But, I did spend most of the day documenting Cooper on her 14 month birthday. It’s amazing how quickly milestones pile up and your baby is now a toddler. We are so lucky to have enough support from family and friends to be able to keep Cooper healthy. If you haven’t met her yet, you must put it on your list as something to do. She is such a good baby, we are spoiled.

She loves to:

Sit in her Chair

Play in the cabinets

Play in her Playroom

Kiss Elmo

Cooper’s Health

Cooper has her blood counts checked at Cook’s by her hematologist every two weeks. For now our appointments are Friday afternoons. The next appointment will be January 23.

Her last ANC (absolute neutrophil count) was 70. It was 110 the previous count, and 50 the count before. According to her doctor, this is really no change. Anything below 500 leaves her in significant risk for infection.

So for now, the plan is to keep her germ free. Our lives have changed somewhat. Cooper is no longer able to go to daycare, she is not able to be around other children, and we have to keep her away from most public places.

Although it is pretty hard to catch a bacterial infection (which she can’t fight against), if she gets a viral infection we have to treat it the same way with a trip to the hospital and lots of medication.

So for now, Amanda Baylor will watch her and split the time with Mimi. As far as Cooper’s concerned, she has no idea her life is different. She is officially a walker, and stumbles around the house like a little drunk person.

Our hospital story:

The entire month of November was rough. Cooper started out with severe diarrhea and a mild fever that caused a horrible diaper rash. We treated the diaper rash and started the BRAT diet. After a few weeks, she was better. Then almost immediately she  began a runny nose and cough with a low fever. All her doctor told us to do was keep her hydrated and use Motrin and Tylenol for the fever. After about two weeks of her staying about the same, we saw the doctor again, who still said we were doing all that we could and she just had a virus.

Around Thanksgiving, she started cutting all 4 top teeth at the same time. On Thanksgiving Day, she developed blood blisters in her mouth. By that Saturday, November 29, her gums were turning white on the top left side. An after-hours call to her doctor helped us decide to bring her to the Urgent Care Clinic for Cook’s Children’s. My husband and I took her on Sunday, November 30, when the clinic opened at 11am. We were seen within the hour. The doctors there had never seen anything like the sore in her mouth. She was immediately started on anti-biotics through an IV  and her blood was tested for infection. After 30 minutes, the doctor returned to tell us Cooper’s blood results were abnormal. This part is still a little blurry. We were told Cooper had an ANC of 200, which should be over 2000. I had never heard the term neutrophil, so I was very confused. The doctor informed us we already had a room waiting for us at Cook’s in downtown Fort Worth where Cooper needed to be seen by an Infectious Disease doctor and a Hematologist.

We were in the hospital for 7 days on an up and down roller coaster trying to find a diagnosis. A bone marrow biopsy was able to provide enough information to leave us with a diagnosis of Autoimmune Neutropenia.

Please check back soon for some updated pictures and video.

It’s the new and improved Mini Coop blog

With the start of the new year, I felt like doing a little spring cleaning with the old blog. This new blog screams 2009!

You are welcome to view the old blog at minicoop.blog.com. I will repost some of those pictures here. But this blog is all about Cooper after her diagnosis of Autoimmune Neutropenia.