Archives for March 2009

Busy day today…

Hannah had her developmental therapy session today.  She absolutely loves Jenny, our therapist.  Jenny was so impressed that Hannah actually sat up and balanced on her butt for almost 20 minutes without falling.  My baby girl is getting the sitting thing down — she is even starting to put her hand out to balance if she falls, but that is something we need to work more on.  Hannah also showed off how she loves to stand (holding on to something) for a couple of minutes as well.  She gave us suggestions on working with her to get her knees into a crawling position as well as to continue working on the back-to-front rolling over.  I love working with her because she gives me suggestions that seem really easy to implement, and I do work with Hannah at least two to three times each day on her developmental therapy.  The success is starting to show!

As for eating, I replaced 2 ounces of water with 2 ounces of apple juice in 3 of Hannah’s formula bottles.  She had absolutely no problems with that.  We also put applesauce on her tray at dinner with us, and she just played around with it and the spoons & toys on her tray.  A bit of it got into her mouth, and she would give a weird face, but she didn’t completely freak out. 

Then, and this is big, we gave her a biter biscuit.  She was munching on that thing for about 10 minutes.  In and out.  She wasn’t really sure if she liked it, but she kept chewing on it.  She chews on everything, so this was a perfect idea.  I was staring at her, literally the entire time because I was afraid of choking.  But she was fine.  She only ended up eating maybe about 10% of it, but at least that is a start.  The funny thing was when she got a bigger piece, maybe about 1/3 of a cm, in her mouth, and she started screaming and crying.  She would not let it go into her mouth more! 

But thanks to so many of you, I got some wonderful suggestions that we are going to try out.  Thank you!

Last, and definitely not least, my dear Abigail.  It looks like she is going to have to have her third set of tubes put in.  One tube is basically almost out, but the other one is completely blocked and nonfunctional at this point.  Sadly, she still has middle ear fluid.  So, we are going to wait 3 more weeks and then make the decision.  I’m actually glad it isn’t right away because we just have so much going on with our trip to California for Passover and Hannah’s swallow study.

Boy my little girl, you have kept me on my toes for 8 months now!!  

You have grown so much the past month, not just in size, but in all the tricks you can do.  I love watching you stand up in your exersaucer, “ba-ba-ba” to me, and laugh hysterically at the Wiggles still!  What is it about Wiggle Sam Moran that makes you laugh so much?   I am so impressed with your actual “baby steps” you take between Daddy and I when we hold body while you stand and walk.  Sure, you still may not be able to turn over back to front yet, but I have a feeling you will be walking before you do!

You have an incredible way of charming every one you meet.  You just have such an infectious smile that makes everyone want to cuddle you.  God knows you have me wrapped around your little fingers with just that cute little grin!    You even have your brother and sister totally in love with you.  They can make you laugh so hysterically every time; is that why when they walk into the room, you get so excited?

We can definitely see your personality start to come out now.  The way you you make that perfect frown when you are in your “I want…” moments.  The way you are so independent and love to be able to play with toys all day long.  The way you seem to be almost unaffected now with all the medical procedures, examinations, and pokes & IV sticks.  You take it all in stride.  I know, you really don’t know any different in that respect, but you are my hero.

I love you, my little Miss Hannah.  I will continue to fight for you every minute, every day.  I will continue to love you even more than that.  We will celebrate on the 25th day of every month, celebrate another month of having you here with us, shining your smile and warming our hearts.

Happy 8th-month birthday, my beautiful girl!

Let’s just add ANOTHER complication to Hannah’s life, shall we?  (Yes, note the sarcasm).

We just met with Hannah’s occupational therapist, and it seems as if my Little Miss Hannah has possibly developed an aversion to baby food.  It doesn’t matter what flavor, peas, pears, sweet potatoes, applesauce, etc.  It has gotten to the point where she will even clench her little lips so tight just so we can’t get the spoon in there.  She will even start crying out if we continue to try for more than a couple minutes or so.   If we get the baby food in with a spoon and immediately chase it with a bottle of formula, she has no problems. 

So, I’m not convinced it is even a swallowing issue because she doesn’t even want to get it in her mouth.  When she does get it in her mouth and is forced to swallow it, we don’t know if she is trying not to swallow it by fighting it or if she actually is having swallowing issues.  Honestly, I don’ t think it is swallowing-related because her formula is pretty thick because of the rice cereal.  Also, the amount of baby food that we could actually get in her mouth isn’t even enough for her to choke on.

She will be 8 months old tomorrow.  We really only have a couple of months left to get her to start liking food!   Her OT and I came up with some other tricks to try, and we have to be more diligent about a schedule of trying to feed her twice a day.   

Is this GD23 related?  Honestly, I don’t think so.  But you know, until we get the results of the swallow study next month, we won’t know for sure.

TheProjectCharity.org, as many of you know, is a new organization that was created by an amazing woman, Nicole Boice, to help parents just like me find support, resources, and valuable information when dealing with rare diseases.  As all of you know, I have had a helluva time trying to find anything, as I have felt so much on my own.  That’s why I have joined TheProjectCharity.org as a parent mentor and have been working with them to get going.  This is MY contribution to the rare disease community, something that will reach out to thousands of families so they don’t feel “lost.”

Please vote for TheProjectCharity.org.  You don’t need to submit an email, address, or any information.  Just a click.  Vote every day until March 31st.  This means so much to me.  Please just give US a click.

VOTE HERE!  (more details)

Hannah had her 5th Cerezyme treatment today, and it went really well. 

Also, we didn’t get the results back from her DNA sequencing to tell us if it is type 2 or type 3 (see post below).  I hate to admit I am not too terribly disappointed for some reason…