One more night...just one more night

No, I'm not channeling Phil Collins.

We're hoping this is just one more night, and that tomorrow we will receive our get-out-of-hospital free card!

Ok, not FREE. But whatever.

Since the source of Cece's fever has not been identified we will need to wait until tomorrow to ensure that her blood cultures are negative. Her pediatrician stopped in this evening and said that she fully expects negative results. Time will tell, but I will say that she is definitely acting like herself...including still being awake at 11 pm. After no nap.

Yes, that's our girl!

Tonight she took a bath, danced between the bed and the cot, ate cereal, drank milk, and watched both Madagascar 1 and 2. I am hoping that sleep will approach soon. I know it will for me!

Thanks for checking on us.

Back in the saddle...

It's been a busy summer. And it really was never my intention to make this into a "I'm only posting when we're in the hospital" blog. But for the moment, I guess that is what it has become!

So yes, Cece is back in the hospital. We came in through the ER at about 6:30 last night, and about 6 hours later we finally made it up to our room in Peds. Not sure why it has become such a long wait to get from there to here but it was 6 hours when we were here 2 months ago as well! In any case, her temp was 102.8 so we followed the usual routine...pack up...call the hematologist...drive to the hospital. Only this time, she started crying as soon as we walked in the door because the memory was a bit too fresh. I guess that's just going to be the way things are as she gets older and remembers things more clearly.

Her temp was up to 104.5, with Tylenol, at 1 am this morning. But for now she's at 100.1, playing with her new felt farm toy, and watching Winnie the Pooh. So all is good for the moment! They've done every test under the sun and everything has come back negative. So she'll stay on her IV for at least another day and then we will wait and see what the doctors recommend. With any luck she will get to sleep in her own bed on Wednesday or Thursday night.

Thanks for your thoughts and prayers!

Yeah, we're still here...

So, I seem to be a bit tardy in posts these days. It's a bit funny, really, because there hasn't been much going on...so I really have no excuse. Well, perhaps the fact that the children don't want to go to bed until the sun goes down has something to do with it! By 9:30 at night my brain isn't working all that well anymore, and so I haven't been keeping up with our blog.

But yes, we're still here.

We had a good vacation at the end of June/beginning of July. We headed to the suburbs for a couple of days and had a fun time taking the train downtown Chicago. The kids played in the fountain at Millenium Park and we got plenty of walking in between the tall buildings and along the Chicago River. We then headed to Door County, Wisconsin and enjoyed a few nice summer days there. The kids had a fantastic time at the fireworks on July 4 and we were treated to a ride along the bay in a big ferry boat! It pays to have friends who know people who own ferry boats!!!

Alec will be starting kindergarten in about 5 weeks. Oh...my....gosh. How can my baby already be going to kindergarten??? It seems like just yesterday that we brought our little man home...

Ahh, memories...

We have his supply list, and I've ordered his uniforms, and yesterday we purchased fabric and supplies to make a Transformers nap mat! Sure, I could have bought one, but it seemed too easy. Ha!!! Actually I think it will be a lot of fun and he will enjoy helping me put it together. You've got to love free patterns on the Internet!

Cece's doing great. She has scraped her knees and fingers up numerous times over the past few weeks and we have been concerned that she might end up with infected owies, no matter how careful we are with cleaning and slathering with Neosporin...but I tell you, that girl is an amazing healer. Perhaps the knees look a little worse for the wear but her skin is as good as new. We had her appointment with the pediatric orthopedic doctor last Friday to check out her flat feet. It's all good news...no orthotics, no special shoes, no braces, no worries!!! She will see the cardiologist in a month or so and hopefully after that appointment, we will be able to check that specialist off of the list as well. One of Cece's favorite new phrases is, "Mommy, look at my happy face!" And with good reason, it seems!!!

I'm having a lot of trouble uploading pictures, so here are a few from our Chicago trip...I hope to post a few more later this week.

Thanks for checking in on us!

Home sweeeeeeet home

Cece was sprung from the joint released from the hospital at about 1:00 this afternoon. She had an utter and complete meltdown upon removal of her IV, and then did not want to be put down at all while I attempted to pack up 3 days worth of our collective stuff. But she was at least willing to stand on the bed and just look at me with teary eyes for a few seconds so I could wrap it all up! We arrived at home and promptly went to bed...both of us got a nice nap.

Of course, now she has no interest in going to sleep. Oh well.

It is GOOD to be home. Thanks again for your thoughts and prayers!

Quick update

Well, there's not too much to report here. We finally have wet diapers - that's a good sign. She was probably a bit dehydrated when we arrived, which is not a good thing for a sickler. And right now she is playing with a balloon and watching Cars for the 37th time today.

Well, maybe it only SEEMS like the 37th time.

Anyway, the doctor visited around noon and said that Cece may get to go home tomorrow. We'll just wait and see how she does, but tomorrow would be at least one day earlier than we had expected!

Thanks for all of your thoughts and prayers...it looks like this will be a nice short stay!

14 months

We had the kids' birthday party on Saturday, and I received some oh-so-gentle ribbing from family members with regard to my very limited blog updates. So I planned to put a little post up with some pictures of the party and all of that good stuff.

Unfortunately, you'll have to wait for that one...because I don't have the pictures downloaded yet and the camera isn't with me at the hospital.

Yep, the hospital.

We made it 14 months, which is pretty amazing for a little one with sickle cell disease. Cece has had a runny nose and a bit of a cough for a few days and we thought it was just allergies...and then Sunday she had a low grade fever...and I took her to the doctor yesterday morning and it looked like a simple virus. Then the fever spiked and all of that changed.

At 6:30 last night I brought Cece to the Emergency Room to be evaluated and admitted. Now why they would call that place the EMERGENCY Room I truly don't know. We have had some long stays down there but this was the longest by far. At about 11 we were coming up to our old haunting grounds, Room 203. At midnight we were checked in but Cece was a bit wound up and not at all ready to sleep. So we watched Elmo and then about half of Cars before falling asleep, snuggled together in the hospital bed.

She had a very rough evening of being poked, prodded, xrayed and IV'd. And even though we know exactly what to expect and exactly what it will take every time we show up here, it doesn't make it any easier for anyone. It is heartbreaking to hear your baby girl screaming while you have to hold her down for procedures. But it is what has to be done...so we just pray a lot and do whatever we can to comfort her.

Fred went home about 11:30 and had to be up at 5 to go to work this morning. It will be a long day for everyone, but for now the princess is sleeping peacefully. That is a blessing.

We'll probably be here until Thursday morning, assuming the hematologist wants to wait for her blood cultures. Her fever was still over 101 this morning which guarantees another full day at the absolute minimum. I promise to update when there's any news to share, but the usual routine is just waiting it out.

None the less, we made it 14 months. And for that we are grateful!

What we've been up to...

I am floored that it is already May. The last month has simply flown by! A few things that happened in April...

We officially made it A FULL YEAR without hospitalization for Cece. (I'm not counting her surgery hospitalization, since that was planned and not due to illness!) Of course, when I mentioned that at her well-child visit this past week, our pediatrician told me to shush as to not jinx it! Yes, it will happen again...it is unavoidable. But PRAISE GOD for the months that we have had. We are so grateful.

Alec had his pre-kindergarten physical. Oh my gosh, my baby is going to kindergarten! He had to have two shots, a blood test, and the old "pee in the cup" business. Poor guy...but he made it through with just a few tears. He is measuring at the 95th percentile for height and weight. I always tell people that when he is 8 or 9 I am going to have to stand on a stool to reprimand him! When we were done we gave him a special treat and let him play in Play Land at McDonald's. I am usually not a fan of the petri dish play area but since he had three pokes, I just doubled up on the wipes and anti-bac spray. Needless to say they had a rollicking good time.

Cece had her well-child visit at the same time and is at the 50th percentile for height and weight! WOO HOO! For the longest time she wasn't even on the chart (i.e. below 3rd percentile) for weight, so it is fantastic to see how far she has come. Everything else was good, except that the doctor was a bit concerned about her flat feet. Kind of funny considering how BENT they were when she was born and how hard we worked to straighten them out during the first couple years of her life! So we'll have to keep an eye on that but in the whole scheme of things, it is incredibly minor. Once again, we are blessed.

And oh yeah, I had a birthday. It had a zero on the end. I'll let you figure the other number out...but let's just say it's not a 3. I was not really ready to leave my last decade behind but hey, my life is pretty awesome so what do I have to complain about??? Fred took me out to dinner and a movie (we hadn't seen a movie in a real-life-theater in several years) and gifted me with some money to purchase some much-needed clothes. Yep, blessed again.

Last night we took the kids bowling with an outing for families at our office.

Alec "wacky" bowling. He actually got two strikes that way...I wasn't able to get one bowling normally, even with the bumpers!

Cece was bored with the bowling after the first couple of frames, so she decided to "play the drums" (her words, not mine) instead.




But based on this shot, I'd say she had a good time regardless.

Alec working on his alphabet on the fridge. Ok, U comes before V, but so what...he did this by himself and was oh so proud!

And now I present to you...

Cece's potato song.

Sweet.