Archives for October 2010

Daddy is out of town this week for training for his new job.  He left Sunday night and will be back late Friday night.   I’m so excited that he has a new job, one where he gets to work from home much of the time.  But being home for a week with me and the three kids had been stressing me out the past couple of weeks.

Yesterday was ridiculously rough.  It started with me only getting a couple of hours sleep because I still stay up until 4 am to keep an eye on Hannah every morning.  I had to get the kids up and ready for school (thank goodness we carpool and another mom does the morning shift!) and then head off to Hannah’s Cerezyme infusion.  I crashed for about an hour during the infusion while she napped on me for about 90 minutes.  The last 45 minutes she was thrashing around, awake, and wanting to get off my lap and go play.  Can’t do that when you are hooked up to an IV!

We got home around 1:45 pm, and then I had to pick the kids up from school at 2:45 pm.  Rushed to help Abby with her homework, and then I took Abigail to her Daisy Scout initiation meeting.  Got home around 5:15 pm, and my father-in-law surprises us with a homecooked BBQ dinner — what a godsend!   Got the kids showered and ready for bed.  I fell asleep around 1:15 am.  Fortunately, Hannah did really well last night, so I got to sleep for 3-1/2 hours until she woke up at 5 am.

Oh, did I forget to mention that on the way to the Cerezyme appointment that I got a call from our nursing agency and that our normal Monday nurse called in sick?  I was stressed out big time until they called me about a few hours later to tell me they got us a backup nurse!  I felt absolutely horrible for Abby because this Daisy Scout thing is a huge deal for Abby, supposed to be just Mommy-Abby time.  I didn’t know how I would work it.   Fortunately, our backup nurse came to our rescue (came straight for another shift to help out for a few hours so I could get my carpool and Daisy Scouts done).

Today, we had it much easier.   Our normal nurse was back, and as soon as she showed up at 9 am.  I went upstairs and crashed from 9:30 am until about 1:30 pm.  I woke up so much more refreshed.  Took a long shower.  Came downstairs to play with Hannah for a bit and then headed off to the pick the kids up from school again.

I tell ya.  I give my single-mom friends a lot of credit, especially those of you with multiple kids and/or special needs kids.  It is absolutely nonstop, constant.

On top of everything else, Hannah had been sick for the past few days, throwing up for a couple of them.    But today was the first day that she seemed finally on the mend.

This week has already proven that moving from Texas closer to family was the right idea.  My inlaws have gone above and beyond for me this week, constantly checking on us, bringing us dinner, and there is just a sense of peace knowing that they (and my brother-in-law and sister-in-law) are just 20 minutes away if I need them.  It is a sense of security that we never really got when we were in Texas.

Daddy comes home late Friday night, and then he starts his new job on Monday.  I’m so excited for him.  He did not do well being unemployed at all.   He will be on the road quite a bit during the days.  A few times a month he may even have to go up north since the entire state of Nevada is his territory.  But his home base is right here…at home.   It is a perfect scenario for us.

As I mentioned yesterday, Dr. Lopez (neurologist on Hannah’s Gaucher team at the NIH) came to visit with Hannah today at our house.  It was wonderful seeing her again, and it was a very positive visit from the standpoint that Dr. Lopez got to see Hannah being “Hannah” instead of tantruming constantly because of being in clinical setting.

Dr. Lopez took video of Hannah, trying to get good visualization of her abnormal eye movements (strabismus, nystagmus, etc.), so the rest of her team at the NIH can see what us going on.  She also focused on getting video of Hannah’s movement disorder as well.

Hannah played while we chatted, sat on Dr. Lopez’ lap while she looked through her favorite books, and crawled all around.   Hannah didn’t even realize she was getting a neuro exam at the time — it was good!

We had an interesting conversation with Dr. Lopez.   Because Hannah has definite “lateralization” of symptoms on her left side (her left eye nystagmus, misuse of her left hand, etc) plus her new-onset movement disorder, one possibility that Dr. Lopez brought up was that Hannah could have suffered a mild stroke back around the time she had her initial seizure in May (which led to her hospitalization).  She by no means said that is what happened, but she did bring it up as a possibility to consider.

We know that Hannah had a seizure due to anoxia (lack of oxygen to the brain) due to her tantrum breath-holding spell.  Her O2 sats had dropped into the 50s for at least 5 minutes before the paramedics got to her even with the oxygen we were giving her.  We know the seizure lasted for about 15 minutes, and she had a significant recovery process those few hours after the initial seizure.  Her CO2 was quite high for about an hour or so in the first ER (before we were transferred to TCH).  It is an interesting concept that seems to make a lot of sense.

When we go back to the NIH in March, they will definitely do another brain MRI to see what changes there are from her brain MRI back this past March.

Dr. Lopez was able to see her chorea movements, even though they were at the minimum because she had just recieved her midday meds before she had got there.  Dr. Lopez was open with the fact the movements could also be drug-induced from the sedation (which actually would be better than her having had a stroke, as there is more hope for the movement disorder lessening and hopefully disappearing someday).  It is just really hard to say at this point what caused it.

Dr. Lopez offered to come back to visit us Thursday morning before she gets on a plane back to her home.  She wants to see Hannah’s movements at their most significant, which is before she gets her morning meds.

I am so grateful that Dr. Lopez and the NIH team is taking such care in trying to help figure out what is going on with Hannah.  I feel so very lucky to have doctors like Dr. Lopez, Dr. Sidransky, Dr. Goker-Alpan, and Dr. Schiffmann looking out for my beautiful girl.

I do have homework — I need to come up with a timeline for Hannah’s hospitalization including the seizure, meds, etc.  Thank goodness for my blog — there is no way I could remember all of it!

Tomorrow is going to make for a very interesting and busy day!

At 9 am, we have our first meeting with the Medicaid Case Manager regarding getting Hannah on the Katie Beckett Program (medicaid).  I have done enough paperwork to kill five trees already, and I have another stack that was requested by the case manager for tomorrow.

At 1pm, Hannah has her first visit with her new pediatrician, Dr. Carrie (her last name is quite long).  This is the same pediatrician we have been using for Ethan and Abigail, and we think she would be a better fit for us with Hannah.  Our other pediatrician we had been set up with was nice, competent, etc.  But she is only in the office once a week because of hospital rounds and being a professor.  When we needed to see her, we always were told we could see a resident.  We don’t want a resident who knows nothing about Hannah.  Dr. Carrie has a great reputation, local, and works almost every 5.  She is very easy to get in contact with.

At 3 pm-ish, we have a very special visitor coming to our house.  Dr. Lopez, Hannah’s neurologist from the NIH, is going to be in town for a conference and has offered to come visit with Hannah at our house for a bit.  I’m looking forward to her opinions on Hannah’s progression (even though she is more familiar with adult Gaucher’s), her chorea movements, and just send back an overall update to Dr. Sidransky at the NIH since we won’t be able to visit until Spring.  We feel very grateful that she is willing to take the time to come visit with us!

Phew….  busy, busy day for my little girl!