Home Sweet Home

We came home yesterday - YAY! I am so glad to be back. Now, if I could just get Jenna to sleep at night again :( She seems to be having some difficulties of her own lately, but I think she'll be okay. If it wasn't for the seizures, I don't think I'd worry as much, although she hasn't had a major one in over a year.

We have an action plan for Cohen, though, which made me feel much better coming home this time. The hematologist is back on board and he is probably going to perform a bone marrow biopsy. Cohen's ANC (Absolute Neutrophil Count) has reached some all-time lows. As I understand, the normal numbers are as follows: 1000-1500 =mild neutropenia (slightly higher risk of infection than normal); 500-1000=moderate neutropenia (moderate risk of infection); 0-500=severe neutropenia (danger!)

Cohen's numbers went like this: Sat - 400; Sun - 207; Mon - 2400 (YAY - he looks great!); Tues - 1170; Wed - 760...

A great big bell curve. We were released with him at the moderate level, and I worry that he is not through dropping again; he was on a downward trend so it seems a logical concern. We are told to be careful - no crowds, no shopping carts with germy residual... We see the hematologist within the next week and he will test Cohen's blood again. Then there's my two other kids - Hannah who wears her infection on her skin, the most convenient place to "share" with others, and Jenna who attends school and catches whatever's going around then comes home and drools and bites her hand and touches things around her, including all of us. How do I keep things from spreading through our household? From spreading to Cohen?

I went back through Cohen's medical records and I found a few instances where his Granulocytes had dropped quite a bit, one that was even flagged LP, which I think means "Low Panic" - as in danger, alert! I didn't even know this happened, but this was in January, his last visit to the hospital when he had the abscess in his chest wall.

I don't know what all of this means yet but it is so frustrating to not know. Maybe this issue with white blood cells will resolve itself and not become part of whatever is challenging him so much. My heart goes out to the millions of parents who have gone through this discovery process and found themselves with a neverending stream of questions and the desperate search for answers, for a way to help. I want to take his pain from him and I want him to be happy. Last night was great. He looked so thrilled - and relieved! - to be home again. He is doing well, walking all over the living room (his IV was in his foot, so he was a sitting duck for a few days), and I am so thankful we are all home together again.

RIP Daisy

August 9, 2002 - March 24, 2008

Little princesses can have wings...

An Easter Apart...

As I sit here, Hannah is eating way too much candy for her own good and Jenna is so excited because she knows there's something special about today (umm, maybe because we're acting like over-animated fools to convey that to her) and she is dancing around the living room talking to herself in an endearingly LOUD voice.


I had planned on going to church to remember the reason for today, but plans have a way of changing.


Yesterday started off wonderfully. I took Hannah to dance only to remember that dance was not happening this weekend - DUH! - but I had to drive up to the studio to see the big notice taped in the door to remember and then I chastised myself for being a total space cadet (there was another car doing the same drive up/drive off thing, so at least I wasn't the only one). Thank goodness I had the enticement of a birthday party to distract Hannah.  It was at a farm nearby where they host events - one of Hannah's dance friends was turning three. Given Hannah's irrational fear of small animals, I thought going to a farm might not go over so well. I needn't have worried. She rode the pony - twice! - and laughed. We even went into the goat pen together and she was loving it until one of the goats got testy and head-butted her in the tummy when she got near, knocking her on her butt and totally freaking her out.


There's something I've noticed about parties here in San Antonio: every party has to have a pinata. One of the other parties hung up a monstrous contraption boasting Big Bird and Elmo and Cookie Monster (I think) in a hot air balloon, and the attendees gathered in front for a picture. I heard someone from our party calling Hannah's name and I turned around. Hannah was standing in line with the kids in the front row, smiling brightly for the camera, the only blonde kid in a group of hispanic guests. They didn't even try to get her out of the picture. My kid is brilliant; that pinata must have had a couple of gallons of candy in it.

We joked that someday maybe Hannah would become famous and whoever has that picture will try to sell it on ebay, saying I knew her when...

:)

Certainly she has no qualms about being in the limelight, although she looked disdainful and slightly embarrassed when I told her to leave the party and wait for the pinata that would come from the party she was actually there to attend. "Mom, it's okay, mom," she muttered with a frown as she sulked past me.

I should back up here and say that Cohen has not been feeling well. He was running a fever of 102 for about three days and I had just gotten over the flu so I assumed that he might have caught it, too. Yesterday, he was fever free but definitely not better. He would barely walk anymore and he wanted to be held alot and the screaming banchee returned to his throat. Then we noticed little blisters at the base of his pointer finger. We thought maybe he had gotten another staph infection under the skin, or maybe the cold sore virus...again.

I wasn't going to mess around. He was hobbling pretty severely by yesterday afternoon, limping on his left leg and his left eyelid seemed to droop. Off to the ER.

They swabbed his nose to check for the flu. Negative. They lanced and swabbed a blister - we'll have the results tomorrow. Most importantly, they drew blood. The ER doc mentioned that his blood indicated a struggle of some sort. We waited until 1:30 in the morning to go upstairs to a room, where Cohen still remains with his daddy, whom I am about to go relieve. The nurse who asks a whole boat-load of questions upon admittance tells me he is neutropenic - which means his white blood cell count is, according to the doctor this morning "exceptionally low." It seems his blood is indicating, somehow, that not only is he fighting something viral, but something bacterial as well. The nurses cannot enter his room without mask and gown, there is a warning on his door stating he is neutropenic and no one is admitted prior to speaking with the nursing staff, he cannot have fresh flowers in his room or have his temp taken rectally or if he was eating, he could not eat fresh fruit, all because his immune system is compromised. They will draw blood every morning until they see improvement, but this morning's draw did not show any improvement. I worry for him but I know he is in the right place. If I look at the bright side, I guess I could say at least he gets a private room - it could be worse, right?

These infections are not normal. The doctors are beginning to make statements about an immune system problem but I thought we'd already ruled that out. I'm so confused.

On the way home last night, or rather this morning, I stopped off at Wal-Mart and picked up some last minute goodies, some eggs and egg dye, so the Easter Bunny stopped by after all, though I'm still bummed about missing church - but at this point, I don't know where I should even take Cohen anymore and if crowds of people pose a health risk. We just finished dying the eggs and now I get to trade places with Craig so he can orchestrate the hunt with the girls. That way, at least both of us get to participate with them even if it's one at a time. I am so thankful my Aunt is staying with us. Things would be so much harder without her.

I scheduled a flight to Cali before all of this went down because I want to be there for family members who are going through a heartbreaking experience at the moment and now I'm not sure when Cohen will be released and if I'll even be able to go. My son needs his mommy here, and my heart agrees. I can reschedule, though it'll cost me 50 bucks, in addition to the $500 hospital bill I know will come in the mail a few weeks after Cohen is released. A nurse at the desk saw me when I went to leave and asked how I was doing. She must have remembered Cohen's 19 day stint in October because she said hopefully he won't be here as long as that other time. I am praying like crazy, cuz I just might have to jump off a very high building - maybe the top floor of the parking garage? - if he stays as long as that (Don't call the shrinks - I'm just kidding...I think!)

On the way out of Wal-Mart my headlights swung on a family of deer across the street. How beautiful they were in the midst of a sleepless city. I almost cried at the sight of them there, together like they should be.

When is all of this going to end? I am so melodramatic today, sorry. I hope you have (or had, probably) a wonderful Easter. God Bless!

Hi! I'm here...

Hey there. I know, it's been a while.

A lot has happened, really. A lot besides health issue stuff, if you can believe that! We had company this past weekend - my beautiful, young at heart Grandma from Cali and her trusty Cajun man, my Aunt and her hubby and cousins. Finally, we had the opportunity to share some of the extra space around here and it was great. I love seeing family; they help make our house a home.

We went to the traditional touristy locations and more importantly, we spent time together and talked.

Then I took Hannah to see High School Musical on Ice with her best friend and mom. The girls had a great time although it was a long walk from parking to the show and amazingly crowded. Our seats were pretty good and although Hannah didn't know what to make of all that high-pitched screaming and flashing lights, it didn't take her long to warm up. We've caught a couple of figure skating competitions on TV and she claims she wants to ice skate. I wonder how she'll feel when she hits the ice and finds out it's STONE-COLD and HURTS when you fall?? :)

Yes, I have pictures but that'll have to wait for the next post.

Next news: Cohen's therapy services were temporarily put on "follow up on him and wait a while" mode. We all agreed, so don't think they're taking something away from us that I'm demanding or anything. The therapists think that right now, Cohen is in "survival mode" and unpredictably intolerant to therapy. He's basically one cranky buddy who doesn't feel like playing when they try to work with him and they feel like we need to tackle the health issues before he can even absorb the therapy. I agree, but it really sucks when your poor kid is so miserable all the time that it interferes with, well, life in general.

He had his annual IFSP and they asked me various age-appropriate questions like is he throwing things and watching for them to fall? Is he kicking a ball? Is he stacking objects? Is he pretending with cars and trucks? Does he say any words, besides ma-ma (the only word in his vocab so far).

The answer? A resounding, heart-sinking NO. A big, fat, gut-heavy NEGATIVE.

I guess moments like this really hit those of us blissfully ignoring passing milestones by just loving our kids and appreciating what they can do. Moments like this also make me wanna crawl in bed and bawl. WHHAAAH! I'm okay, really, just...sad. We determined that mostly he just wants to walk around and flap things back and forth in front of his face. Okay guys, I know what this sounds like and what you *might* be thinking. I'm praying that on top of his gut-issue, whatever that may be, that he has not acquired some form of Autism. I'm not really entertaining it, but it is an emerging big black BUG on my windshield. I'm praying and hoping for the best. Our appointment with one of the leading Metabolic geneticists is on the 31st of this month. I really hope he holds the key to our locked door. And then I really hope I don't get my hopes dashed again. :(

Finally:

After counting last night, I am on word 52,251 of my book. Our story. Writing is good therapy, really. So that is why I haven't been posting as much these days. Every available minute (and there've been few and far between) I've been pounding the keyboard like crazy.

I'm hoping by sharing, something good can come of all of this. Maybe we can help someone with what we've been through. Sounds so cliche, doesn't it? Oh well. Then again, maybe I'll be the only one to read it, me and a handful of agents who reject it. ;) Fingers crossed!

Hope you are all happy and well!