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Great visit with Dr. B, Hannah’s pediatrician today.  Basically, she is stable.  Her spleen and liver have not grown in size measurement since her last appointment three weeks ago.  She has an “old fashioned” cold (congestion), which on top of her laryngomalacia, we have to keep an eye on.  He also doesn’t agree with early intervention’s assessment of her gross motor skills (they put her at 2 months, he says she is right on track).  He did seem disappointment that Hannah qualified for EI services, however.  Since her platelets have been stable around the 100,000 mark for the past 10 weeks, we agreed to forgo her having to get her heel pricked to run another test.  The last one was 3 weeks ago, so we will do it again at the next appointment in 3 weeks.  She also got two more vaccinations today – Prevnar and hepatitis B.

We talked about having to wait out this skin biopsy to grow out, and how some of those “on the list” for the full workup really don’t match Hannah’s symptoms at all.  He said many of the metabolic storage diseases (what we are testing for) have facial/body dysmorphic features, and Hannah’s facial and body structure looks completely normal.  Well, with the exception of her really cute chipmunk cheeks!

I was also a bit concerned about her weight.  She weighed in at 14 pounds 4 ounces today!  That is almost a pound jump in 3 weeks!  What concerns me is that she doesn’t eat that much formula — maybe 24 ounces a day.  At her weight, she should be eating around 32 ounces a day.  But Dr. B assured me that obviously she is using those calories really well and doesn’t need to eat a lot to gain weight.  Of course, I laughed to myself saying “Sorry Hannah, genetics got you there too!” 

So, at this point, EVERYTHING is pending on the skin biopsy results.  We have another appointment with Dr. B. in early January and Dr. L, the otolaryngologist, in late January, but everything else is put on hold until we know what we are dealing with.

On a separate note, she has become VERY attached to me, and I love it.  I love her smile when she sees me, and I love the fact that she loves cuddling with me.  I love that her most comfortable position is lying on me with me holding my entire hand on the side of her face, as if she wants to be completely closed in by me.  That has really become a trick with her lately.  If she gets fussy, I just lay her down on me, and as soon as my palm caresses her face and lays on top of the side of her face, she just closes her eyes and becomes still.  Her smile is so intoxicating.  I truly am blessed to have her.

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