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Archive for September, 2008

Another piece of the puzzle

Dr. M, the hematologist, is out of town until Wednesday. But Dr. B, our pediatrician who I absolutely love for how much he goes out of his way to help, looked up the results of the liver function tests for Hannah from last Thursday. They all were normal with the exception of an elevated GGT in the 500s. What that means? Possibly some biliary duct obstruction or liver damage, but Dr. B admitted he isn’t an hepatologist and is calling TCH to get us set up with one sooner rather than later. But apparently this wouldn’t have anything to do with the spleen/blood issue.

But hey, any piece of the puzzle is a step ahead, right? (At least that is what I keep telling myself).

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There, I said it. I’ve been blowing this off for the past two months, but after Thursday’s visit, I just can’t deny it anymore. Hannah has always acted fine, so in my mind, I knew she was fine. But the truth is, she isn’t fine. There is something seriously wrong with her, and at this point, the doctor’s don’t know what it is. All I know is that it isn’t something very common or easily diagnosed at this point. But finding out what is wrong with her has taken a more prioritized path than it had just Wednesday, before the TCH appointment and noticing her liver has significantly enlarged.

I have a lot of guilt about this…did I do something wrong during the pregnancy? Maybe this is payback for my fear and apprehension about having her when I found out I was pregnant? Is this a result of my pregnancy-induced hypertension?

I look at her list of symptoms — enlarged liver, enlarged spleen, slight anemia, and low platelets. I wonder if there are other symptoms that we are missing? I wonder if since I’ve never done the “newborn thing” that there are things that I just assume are normal in a baby that may be aren’t?

Then I look at my big boy E. He’ll be 8 next month, and his weight has dropped down to 53 pounds, fully clothed, no shoes, and he is of normal height for his age. I know it is most likely caused by the ADHD medication, Vyvanse, since that is a common symptom. We just cannot get him to eat well. I mean, he may have a good-sized meal every once in a while, but even trying to get him to eat fatty and high-calorie stuff like ice-cream, pizza, or cheeseburgers is tough because he “just isn’t hungry.” He has dropped under the 50th percentile for weight at this point, not officially, but based on growth charts online. He has his 8-year wellcheck appointment in the next few weeks, I wonder what Dr. B, our pediatrician, is going to say and do.

Then there is little girl A. My big girl. She is still having pee accidents at home every once in a while. I honestly don’t know if it is regression because of the baby because it really only happens at home, but it has happened on a couple of occasions at school. Never has happened while we were out running errands or going out for a meal or something. She’s 4-1/2 years old now.

Tomorrow is my postop with my OBGYN. Now that I’m almost turning 40, I need to talk to him about a mammogram. I need to make sure I’m healthy right now, especially with everything else going on right now. Oh yeah, did I mention I still have really high blood pressure since giving birth? Last check on Monday was 170/100. Needless to say, I have been a big more diligent on my BP medication. What happened to this PIH supposed to be going away after giving birth?

Tuesday is more bloodwork for Hannah. They are testing for some metabolic storage diseases/syndromes. I hope they find some answers. I love that little girl. She has truly made me so happy, I just can sit and stare at her all day long. My mom asked me if I have gotten bored yet taking care of her all day in and all day long, and honestly, I haven’t. I just love being with her. (Of course, I’d love for her to sleep through the night, but at least we are down to one feeding during the night that I have to wake up for instead of two!).

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New symptom

Went to TCH today for followup with the hematologist. Last time, he was very carefree and not very proactive with Hannah because it seemed as she was getting better on her own (hence the 5-week later followup). That changed today.

It seems that since the ultrasound 3 or 4 weeks ago, her liver is now “significantly enlarged.” What this means, I have no clue. He seemed pretty concerned and wants us to see a colleague of his, a gastroenterologist, at TCH next week. He was stumped as to what was causing the low platelets (which dropped from 120 to 107 since last week) and the enlarged spleen, but maybe this enlarged liver can shed some light on things.

I asked him if we are dealing with something life-threatening at this point. He said “No.” Then I said, do we need answers in the upcoming days, weeks, or months. He said “weeks.”

So frustrating…not to mention that I spent over 3-1/2 hours there today between the first blood draw (which Hannah screamed) which was a heelprick to waiting to see the doc and then waiting another 90 minutes to get more blood work intravenously (to check liver function and related things.).

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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.

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