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Archive for the ‘Early Intervention’ Category

Finally, a positive meeting.  Keeping in mind that Hannah was born a month early, her adjusted age would be 3 months.  She is basically just a tad behind in everything at the 2-month level except, and get this, socialization!  She is at a 6-month level in that already.  Not surprising though — she smiles, laughs, recognizes certain people with a big grin (especially me), and babbles back and forth.  Whoo hoo — they even called her a “charmer.”  She has a way of capturing people’s hearts, I tell ya!

We decide to just go on a service plan for now and meet next month to see where we are and if we have a diagnosis.  It was difficult because one of the questions was “what would you like to see in 6 months?”  I told them, we are at this huge fork in the road because we have no clue.  If it turns out to be something benign, then we hope to never need their services.  If it turns out to be something devasting like NPC, then we will need a whole host of services, and everything in between.  So, we will wait another month and, hopefully if we have a diagnosis, we can come up with a better game plan.

But I did ask them about other services, and they do have family counselors that we can talk to and to work with us with the other children if the prognosis is not good with Hannah.  That was a huge relief because we may need the help.  They will also help with obtaining SSI (supplemental income) if we get to that point. 

But for now, good news — she is right where she should be (okay, just a tad behind, but at this age, it is good enough for me!)

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Hannah at 4 months old

Hannah at 4 months old

(New post at my daily life blog  – click to read)

Unless we hear something about Hannah’s skin biopsy, which I doubt, the only thing we have going this week is a meeting to come up with a IFSP (individualized family service plan) with Early Intervention.  Two people are coming over on Wednesday morning, and we were told it would last a couple of hours.  Being that she is only 4 months old, I’m really curious to see what they recommend.  However, I do plan to take them up on their posted services about finding support groups for both Daddy and I and for siblings if we need to take advantage of that. 

We pretty much had a complete denial weekend, and honestly, we didn’t talk about her condition much at all during the past few days until later this evening on the way home from dinner.  It was a nice mental break, I guess.  Denial would also be a good word for it.  But it was just nice being a family of five, cleaning the house after the carpet fiasco last week, and starting to get the holiday decorations ready.

I did receive the following email response from our genetics doctor.  His nurse told me about 10 days ago that she would check to make sure the skin biopsy is growing okay, but she has yet to return my messages.  So annoyed with that, and I will try again THIS WEEK and follow up on this.  If for some reason this skin biopsy fails to grow, I want to know as soon as possible, so we can get another one done and get some answers.

Anyway, here is part of his email…
The fibroblasts will be tested at our lab for Gaucher and also sent to the Lysosomal Disease Testing laboratory at XYZ where the cells will be tested for NPC as well as a screening panel for other enzyme deficiencies (a “full” workup).  These tests do not guarantee that we will have a diagnosis after they are performed, but we will have to cross that bridge when we come to it.

On a separate note…

 Hard to believe I was pregnant with Hannah at this time last year but didn’t know it!  Wow, if I knew then what I know now, I would not have believed it.

I posted a bunch of new pictures on facebook of Hannah, Big Boy E, and Little Girl A.  But here is my favorite one of Hannah! I’m still working on fixing my shutterfly account.

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The lady from ECI came over this morning.  She is a nurse that works to assess children to see if they qualify for the early intervention group of programs.   We went through all her symptoms, and the list of specialists that she currently has (a pediatrician and 5 specialists).  Because of Hannah’s possible diagnoses, she is automatically eligible for services.  (I don’t know why that is more upsetting to me than comforting.)

Long story short, we have another meeting with an ECI specialist and a nutritionalist (because of Hannah’s possible metabolic condition) on December 3rd.  They want to have Daddy there too, because that meeting is to come up with a plan of action.

Since Hannah is really too young therapy services at this point, I think, the nurse said they may just monitor her monthly just to keep tabs on her development.  If she does show signs of any type of delay, the appropriate therapy will be ordered immediately since she will already be in the system.

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