Weekly update

I find that when things are moving along without a lot of drama that I don’t find as much to write about.   It is not for lack of anything really to say, but it is more that the “chaos” in our lives is more centered around moving to Las Vegas in June than Hannah herself.

But that does not mean that she has not made any strides this week!

• Hannah’s latest platelet count is 218,000 – normal!!!    For the first time in her life, her platelets are normal (150,000 to 450,000 is normal).  For a baby that was born at 6,000 and did not reach 100,000 until she was around 1 year old, this is great due to the Cerezyme!
• Treating her as a toddler instead of an infant.   Daddy and I have made a strong effort in the past few weeks to start treating Hannah less with kid gloves and more like a toddler.   Last night was our first attempt at putting her to sleep in her crib while she was awake (instead of falling asleep on one of us).  She cried and screamed for about 20 minutes before we brought her back to our room.  Tried again tonight — with the addition of a second paci and a little people in each of her hands, she fell asleep…in her crib!  This is wonderful!
• Screaming and crying.  We have noticed that she is learning to control her breathing much better during crying, laughing, and screaming.  Even though she does not have a normal “vocal” cry or laugh, she does not seem to hyperventilate anymore during her  tantrum episodes.  Her face will get bright red, and she will get very stressed out (as any kid who has gotten their way since birth and treated with ultrasoft kid gloves would be).  But she has yet to hyperventilate.  We have been pushing the boundaries of how long we can let her cry and tantrum, and we are very impressed with her tolerance now.   It is not quite “normal,” but it is a heck of a lot longer than before.  This is a huge breakthrough for us, both on the medical front and from a parenting front.
• Inability to go from stand to the floor.  Now that she is pulling herself to stand and cruise more and more now, she has gotten into the predicament that she does not know how to go back down to the floor.  She also does not know how to get down to the floor from a little chair as well.  She gets really freaked out, and when we try to move her through it to teach it to her, she stiffens up like a board and starts crying hysterically, as if she is scared of what we are doing.
• Curled toes and the W-sit.  She is also picking up some bad habits which we really, really need to start focusing on now.   Hannah does not know how to sit like a normal child.  She only knows how to get herself into a “W sit.”  This also allows her to go from lying to crawling to sitting and moving.  The W-sit is apparently really horrible on her knee joints, hip joints, and ankle joints.  Now that we are working with a gait trainer and a walker, we are seeing the negative effects of this sit on her walking.  Also, she has started to curl her toes under her feet when going from a sitting to a standing position to cruise or to be lifted up.  It looks so dang painful for her, as she winces as she does it.  We don’t understand why she does not put her foot flat out when she does it anymore.   We need to keep her in her orthotics and shoes much more often during the day to help with this.
• Cerezyme treatments in Vegas almost secured.  Finding medical services has been really, really rough for us.  Actually, finding a pediatrician in Vegas has been really tough!   However, thanks to the wonderful people at Genzyme and Amicus (who both recommended the same doctor), we are in the process of getting the paperwork in order so that Hannah will not have much, if any, of a disruption of her infusion treatments.
• Medicaid finally, sort of!   You know, this Texas Medicaid process has been over a year in the making.  We FINALLY got our medicaid number and Hannah is in the Medicaid system.  HOWEVER, because of a screwup with the person who processed our application, they forgot to put a guardian on Hannah’s Medicaid so the only person who can place orders on Hannah’s behalf is….Hannah!   Sure, just have a 20-month-old call, not a problem!  Such a pain in the butt!   But at least we have it, so even though we have to start the process over again in Nevada, we have the previous acceptance to the program to help our application.
• Formula issue.  I was so excited to get the Medicaid because I was hoping that it would cover Hannah’s formula since our insurance does not.   But guess what?  Medicaid will NOT cover it either?   Why?  Because Hannah does not use the formula with a G-tube or other feeding pump!  Because she drinks it in a bottle, it is not considered a necessity!   Unreal!!    So when we get settled in Vegas, I am going to work on appealing this with our insurance company.

Tomorrow is Abigail’s 6th birthday.  I can’t believe she is 6!   Both her grandparents sent her a check, so she went shopping for “girly” stuff — shoes, watches, lots of lip gloss and nail polish, fake kid nails, jewelry, purses, etc.   She LOVED it!  U was so shocked she did not want any toys!  She actually has some money left, and she wants to get MORE shoes with her money.   The two pairs she got earlier this week apparently are just NOT enough!   Happy birthday, big girl!