Archives for September 2011

We had Hannah’s IEP meeting yesterday.   We were told ahead of time that it would take 2 to 3 hours and there would be quite a few people there.   Sure enough, about 15 people brainstorming together (including us) for about 3 hours is what it took to put together goals and tools for Hannah’s future.

We were a bit apprehensive going into the meeting, mostly because of all the horror stories we had heard from other families and reading online about how they felt they had to really fight to get the services they felt their kids needed.   Many times they shared that they didn’t always get the appropriate services.

But it wasn’t like that at all in this meeting.  We had OT, PT, four nursing specialists (including Ethan and Abby’s local school nurse), speech, vision, psychology, teachers, etc.   Really, every specialist that would be important for her IEP.  Daddy and I really felt that each member of that team put a lot of time, consideration, and effort into their suggestions, reports, and benchmarks for her.

There was a very strong cohesiveness between everyone all geared towards what is best for Hannah, my little girl, instead of just Hannah, ID# 1254324.    They had put together a lot of very appropriate suggestions and benchmarks for her, and they were very open to modifying them when we brought up our concerns and hopes.

Best of all, we got for Hannah everything that we could have wanted.   Really, everything.

She is going to get to go to Abby and Ethan’s school for their morning program.   She is going to have a dedicated nurse in the class.   She is going to get PT, Speech, and OT every week (30 to 40 minutes each).    I will share the goals later on (they are in the other room), but there were a dozen or so that just seemed very “on target” for Hannah.   We shared our concerns about breath-holding spells (tantrums) as well as her heat intolerance issues, and they were all discussed at length.

Daddy and I walked out of the meeting kinda stunned because we were so worried about this meeting.   Yet, we went through everything we wanted to push for Hannah, and well, we were given it.

Hannah starts school on September 26th.  It gives us time to get the nursing situation organized as well as get the school staff trained and prepared for our special girl, especially since she will be the only trached child in the skill.

Daddy talked with the nursing company that works with the school district, and they are very willing to work with us on getting Hannah nurses that she feels comfortable with and who would be motivated on working with her as well.   After all, one of our big points was that Hannah really has to feel comfortable with her surroundings.

Best of all was the excitement Ethan and Abby had when we told them that Hannah was going to be going to their school.   To say they were thrilled is really an understatement!

So, September 26th is the day!

We are just a few days from our complete wean from Keppra, her seizure drug.   We haven’t noticed any increase in her movements or any other activity that would indicate she is experiencing seizures.   She has her EEG on September 29th, so we will see if she is having anything going on.

As a matter of fact, as I have shared over the past three weeks, we have seen an actual improvement in her fine motor skills, gross motor skills, personality, and cognition.

Three weeks ago, when she would cuddle with Daddy when she hears me call her from just a few feet away, she would just sweetly smile.   NOW, she will actually throw her body open, visually connect with me, and grin really wide and lift up her shoulders as if she is trying to tell us that she wants me to pick her up.   It is so awesome!

One of the best gifts we have received from this wean, however, is her ability to give real hugs.   She will actually work really hard to put her arms around someone she cares about (us, her nurse, her grandparents, the kids, etc) and give real hugs.   I mean, arms around the neck and squeezing hugs.  Even before the chaos of last year, she never really gave us hugs.   We always gave them to her, but she never reciprocated.

Now, not only does she reciprocate hugs but she seeks them out!   Abby just melts all the time now because Hannah will reach out and put her arm over Abby’s neck when Abby is laying next to her, face to face.

My absolute favorite thing is she now will caress my face when we are lying together cuddling.   She puts her hand, open palm, on my cheek and leaves it there.  Then she just smiles.   We will just stare at each other, very lovingly, for 10 to 15 minutes.   Just smiling, eye gazing, and caressing.   Weeks ago, it was me always doing the caressing.

Now, she caresses my face.  I really can’t describe how amazing I feel when we have these moments.  These intimate, sensitive, and just pure moments.   It is just pure love.  Sweet, innocent, true love.

She truly is one of the best things that has EVER happened to me.