Because Hannah’s disease progression is slower than was originally expected (thank goodness!), we have been able to slowly plant the seeds of Hannah’s illness to Ethan (8) and Abigail (5). 

We made a very strong point never to say she is “sick” but that she has a “disease.”  We don’t want them to connect being “sick” with always having a serious outcome.

Because Ethan is older, we have able to get more in depth with the situation.  For example, there is a boy in his school with physical special needs (including a wheelchair and constant assistant).  We were talking about him the other day, and I made the comment that “you know, Hannah will be a “special needs” child too.”  That led to a discussion about her developmental delays and orthotics.  He had never put two and two together before, but this was a good discussion into it.  He made the comment, however, that “Hannah doesn’t look like she has special needs.”  After explaining to him that special needs is more than just a physical thing, I think he has a better idea of the situation.  Fortunately with him, we had the discussion, he asked questions, and we have moved on.  At least that door is open now.

With Abigail, we talk about her disease causing problems with her eyes and making it harder for her to learn to walk, eat, and crawl.  Abby knows that Hannah has lots of doctors appointments, but we just say they are trying to help her.   That seems to work for her.

One step at a time.  The discussions are now out there in the open, and as time goes on, we will keep sharing more information as it becomes necessary.

There is a discussion on our GD23 family list regarding the personal choices made by different families on whether or not to trach their GD23 babies. The families were so passionate about their decisions, and I was able to see both sides of that decision very clearly. So many heartful and painful decisions such as siblings perceptions vs quality of life vs increased medical intervention. I understood every single point of view, even though many of them conflicted with each other.

And then it hit me. There is a very strong probability that we may be faced with that decision with Hannah sooner than later. Breathing issues due to a “floppy” throat are very common, especially with GD2 and younger GD3 children.

I don’t want to be faced with that decision. I hope we never are forced to make that decision.

Whoo hoo!  Our plane tickets have been purchased (well, the NIH ordered them)…

We will be leaving for Bethesda, Maryland, on July 13th (arriving in the evening) and leaving Saturday, July 18th, around noon.  We will be staying at the Children’s Inn adjacent to the hospital, but they want Hannah listed as an “inpatient” and have an inpatient room so we will have a home base during the day with nurse observation after each procedure.   Then, we will be given a “pass” overnight so we can be comfortable and less claustrophobic at night.

We should be getting an itinerary of tests and consultation in the next couple of weeks.

Hannah has had a really, really rough last few days.  She has been incredibly congested to the point where our last two nights were filled with her choking on her congestion, coughing, and rivers running out of her nose.  Last night, I ended up having her sleep against me sitting straight up.  Needless to say, we are both exhausted.   We also cancelled PT today, because I just couldn’t see putting her through that when she was feeling so horrible.

I took her to the pediatrician today, and she has a pretty “nasty” ear infection in the left ear and a viral infection.   He checked her lungs, every quadrant, nook, and cranny because of the fear of pneumonia.  Her lungs and chest are clear.  Thank goodness!  I asked about ear tapping for her but because she is so suseptible to infections, he wanted her on antibiotics for her ears.

I basically BEGGED him for use of a decongestant as well.  I don’t understand why it was removed for babies, but we couldn’t keep up with the nose bulb last night.  Honestly, it would have required an automatic suction machine to keep up with her last night. 

So she got her decongestant tonight, and WHAT A DIFFERENCE!  OMG, I can see her upper lip, and it isn’t a roaring river!  Hopefully she will sleep better tonight.

We go back next week for our monthly followup with our pediatrician anyway, so it will work out great to make sure she is getting rid of these infections.