Ike
Wow, we made it! We were right in the eye of the storm, and we ended up hunkering down in the walk-in closet under the stairs. It really worked out great. Fortunately, the eye of the storm with the strongest winds hit after the kids went to bed very, very early in the morning. It sounded scary at times, but I was more afraid of and waiting to hear a tree fall on our house. There are thousands of trees in our city and about 15 trees that are between 40 feet and 60 feet tall next to and around our immediate house. After all was said and done, 4 of those trees fell down and THANK GOODNESS none of them hit our house! We were SOOOO lucky.

We ended up being without power for 4 days and our phone landline (not digital) died for a couple of days. Thank goodness after that first full day without air conditioning the weather became absolutely gorgeous. That first day was horrible though with the heat and humidity!

We spent a lot of time with a few of our neighbors, playdates, chit chatting, etc. You know, life without TV, internet, etc., is really not so bad. With the exception of air conditioning, fridge/freezer, and just some light at night to see, we really did well without power for those days. Even since the power came back on, our TV and other electronic usage has cut back dramatically, and we are still hanging out with our neighbors more. It was really nice seeing many on our street come out and just hang out together every day.

Hannah
Fortunately Dr. B’s office reopened today after having their trees that fell cut back. They only suffered external damage to the building and water damage in the lobby (the carpet was pulled out today.). He did an 8-week check on Hannah, and she is looking great and right on target. She even weighs 9 lb 15 oz already – the 25th percentile! Even better news? Her platelets were at 120,000!!!! They are going up on their own! Normal is 150,000 to 350,000, and we are SOOO close to getting to the low end of normal. We still have to meet with the hematologist downtown next week (we confirmed they are open) to find out WHY her spleen is still enlarged and to start coming up with a gameplan.

But she is doing great. She is really good at lifting her neck up and keeping it up for quite a while now, minutes at a time. She is working on pushing up to, and I think that is her favorite position. She is awake and more alert now and for much more often. We are going through a feeding crazy phase today where she wants to eat every 90 minutes to 2-1/2 hours instead of every three hours. Last night though she did this right before bed, and she slept 5 hours straight! That was the longest she has ever slept at night.

Little Girl A
She has been having some major attitude and attention-getting issues at preschool. So much so, we had to have a “meeting” with the director of the preschool and her two teachers the Tuesday before Ike hit. It is obvious she is going through a transition issue, but she has been REALLY bad in class — not listening, ruining other kid’s projects, hitting, pushing, etc. DH and I decided that I really need to spend some more one-on-one time with her, and that Wednesday before Ike hit, she and I spent the afternoon together after I picked her up from preschool early. We had a Mommy and Little Girl A playdate — she loved it, and I actually did too. It was fun. The next day at preschool, her teachers told me how wonderful she had actually been so far. She even got a special sticker for being so good. So, I know I have to work on that after the kids go back on Monday.

Big Boy E
He’s funny. He is a very intelligent boy, gifted for sure. I got an email from his new 2nd grade teacher saying that she has recognized this and has started giving him more challenging projects to work on when the other kids are working and he has nothing to do. I’m so glad that she took his first grade teacher’s advice on that! Though he DID get an incident notice that last day of school for talking too much in class.

We got the ultrasound and Doppler results. Her spleen IS enlarged (no, duh) and is 8 cm, which according to the report, is 2 standard deviations above the upper end of normal. Not sure how much a standard deviation is though. I need to contact the hospital she was born at to get a copy of the original ultrasound report so the docs can compare the growth factor between then and now. There is NO portal vein hypertension, and her blood flow to/from the spleen looks normal. There is some slight restriction on her hepatic artery that is “nonspecific” but that doesn’t seem to be a concern right now.

Also, Hannah’s platelets are at 94, which is just 1 point higher than it was at the last visit on the 13th. But “at least it didn’t go down!”

So, after talking to Dr. B, he wanted me to make an appointment with Dr. M, the hematologist, in two weeks and see him back in 4 weeks. The next day, Dr. M calls me with the results of the ultrasound not knowing that Dr. B had pulled them up the day before and let me know the results. He told me that he wants to see Hannah in SIX weeks and to follow up with Dr. B in 3 weeks. I called Dr. B back with that info, and Dr. B wasn’t too pleased because he wants answers sooner than later because since we have ruled out almost all acute reasons for the enlarged spleen (infection, etc.,), he is concerned that it may be metabolic and require more invasive testing (like biopsies, etc.). But he agreed to go with the flow for now.

I called and made an appointment with Dr. M on 9/25 — which will actually be the 4-week mark instead of 6-week mark. We’ll see Dr. B the week before that just to get another platelet count to see if there is any change.

52. Her platelets dropped from 66 to 52 from Friday afternoon to today, Monday morning. I’m crushed. Dr. B is going to call his colleague from TCH downtown in the Hematology department to see if they want to see Hannah earlier than Wednesday. I’m just waiting to hear.

It was great having Hannah home last night. She slept in a PackNPlay next to our bed. She ate every 3 hours, and I was on baby duty last night because DH was just beyond exhausted. I didn’t mind, although I only ended up with 2+ hours sleep because of the novelty of everything.

We went and saw Dr. B today, and he did another platelet level. She went down from 68 yesterday to 66. During our appointment, he excused himself to make a phone call to the Hematology group downtown at his “group” hospital (instead of the Hematology group of the hospital we were at). We have an appointment Wednesday at 11:30 AM to start a workup on Hannah to find out what the heck is going on. This is VERY exciting because this is the same hospital group that saved A’s life when the other hospital couldn’t figure out why they couldn’t get her pneumonia under control (and ended up needing surgery). THIS hospital is one of THEEE best children’s hospitals in the entire country, and I’m so excited to be able to have them work with us on Hannah.

Hannah was screaming louder than I have ever heard her when she was getting her blood drawn from a prick in the foot. The technician put a bandaid on it afterwards. When I got home and changed her diaper, I took the bandaid off. That little prick left a blood stain on the bandaid that was the size of a nickel and completely soaked. It was then that I realized how serious her condition really is. If a little pinprick takes that long to clot, we really have to be extremely careful with her. Dr. B said that if she has any bleeding that takes even a bit longer than it should that we need to take her to the ER directly.

She’s sleeping next to me on the couch right now. She’s so sweet and cute! Oh yeah, at Dr. B’s appointment, Hannah is already back to her birthweight at 2 weeks. Apparently that is great!