No Answers Yet

We are still waiting for answers on most of C's medical tests. The BMB went well - but at the time his ANC was pretty low and he needed his Neupogen injection right after. He did great and took his time waking up in recovery.

We had to wake him up the morning of his BMB. He's not happy.
I kept having this feeling of "if only he knew..."

Recovery.
The hematologist's office has these cool "treatment" rooms for chemo and other IV infusions.
They are painted with all sorts of themes and have beds and tvs with video games.

Getting his IV taken out.

His bone marrow looked good - it had the right amount of cells in it, including neutrophils. And the doc had a nurse call before the weekend to tell us there are no signs of leukemia. Thank God. So now the question is why are his little defense cells not leaving his marrow to circulate in his blood stream quickly enough? They don't do him any good if they don't come out to fight. In the meantime, we have to keep up the shots twice a week because his body is still struggling to protect itself. A nurse pointed out that he is the boy in the bubble, except with the new miracle of Neupogen injections to keep him safe and healthy. We are waiting for chromosome results and stool test. Maybe the stool will tell us something. This has been a long road and I'm tired lately. Tired of doctors, tests, waiting... I wish this could all go away. I hate giving the shots, but I know millions of parents have to do this for various reasons. Hematologist keeps reminding me that at least we're keeping him out of the hospital. I couldn't agree more.

The nurse is very nice. She does a great job with C and her presence has been extremely helpful. We are trying to work with J on behavior and sleep, so having the nurse here is helping me focus more on J. Sometimes I feel very confused because I'm not sure how hard to push, how stern to be. She sits and twists the bottom of her shirt in her fingers over and over and over and her eyes dilate and get this glassy sheen and I wonder if she understands that I just want her to learn to sleep in her own room, or stay next to mommy when we're out and about so I don't lose her or she doesn't run off and get hurt. She still doesn't understand danger and she still has a hard time sitting and doing an activity for more than a few minutes at a time.I wonder if Cortical Visual Impairment (CVI) plays a factor in her focus.  You can't enjoy what you can't see.

In addition, J is starting to bruise easily and is having more trouble with loose stool. Can't help wondering if we're missing something here... pedi wants to do a CBC, but we decided to hold off in case we find something with C and can test J for that at the same time. Pedi still thinks all three kids are linked. H is starting to have flaring skin problems again. Ugh. I am dreaming of a good night's sleep right now...

Motherhood is such a challenging job sometimes.

On another note: we had more friends move out here from Cali!!! We made them dinner when they arrived this weekend and it's great to have more "friends with history" out here. But already, we have made so many friends out here that we have been keeping quite busy. It's been nice to go, go, go and not think a lot :) Three of my friends have been working out together and they recruited me to their gym so finally, I will have people to work out with and they tell me we are going to go at least three days a week. Maybe that will boost my metabolism so I feel better too. And girl gab sessions will be an added bonus :) Even if I am huffing and puffing at the same time! (START OF LIFE TIME FITNESS!!  YEAH!)

Been having increasing headaches and dizzy spells lately. Jaw is locking and popping more now than ever. Primary doc (yes, I finally, finally went!) says I probably need surgery to cut my jaw bone and realign my lower jaw with my upper. They used to wire your mouth shut when they did this. That would be funny in this household. Now they put metal plates in your head to hold the bones together. Orthodontist is also ready to refer me to oral/maxillary surgeon for the jaw and did I mention I might be getting braces again?

Will post C's results as we get them. Should be trickling in this week. Speaking of this week...H starts school on Wed. J starts on Mon. Can't wait to get back on a regular schedule. And we have a new nickname for C. He is Mr. Mumbles Magoo. He wanders the house and mumbles/hums deep in his throat. No words yet and he'll be two next month. A little concerning, but he's so darn cute and he has the most beautiful smile.

I'm counting our blessings.