If you could see my face right now, you would see that I am beaming with pride.

We knew that Hannah’s skills were scattered, but for the most part they were in the 9- to 12-month developmental age area.   But like her being able to read books and turn pages, this is a new skill that she has been working on that is finally clicking.

COLORING!

From the way she holds her crayon (knowing which end to use) to the way she attempts to draw (which may look like chicken scratch to some, but to me it is a site of beauty!)…she is figuring it out.   Her nurses and I have been working with her daily on this skill, and after about a month or so.

Look how proud she gets in these videos – I love it!!

(On a side note, this was right before her afternoon meds, so you can see her movement disorder is pretty distinct.)

Three doctors in one week — my girl made it!

Today we saw Dr. Dezenberg, Hannah’s gastroenterology doctor.  Apparently, he is one of the few doctors that I have not changed since we have moved here!  I love his personality, very easy going.   Also, even though Hannah has a G-tube, she has very few actual GI issues, so it was another easy appointment today (just like yesterday).

We talked about her throwing up during bouts of trachiitis and teething.  We talked about the fundoplication surgery to deal with the throwing and her reflux (we both agree her reflux is under control with the Prevacid and her throwing up has a cause outside of reflux, so we are going to hold off).

We talked about her weight gain.  Surprisingly, she was 26 lb 6 oz naked today!  I was thrilled!  I felt like she had been losing weight this past month with all the throwing up, but she is still right on her track.  Then again, she has been throwing up mostly mucous so…  We talked about changing out her formula to one that is a bit more caloric in density, but since she is still on her growth path with no failure to thrive issues, this is another one we will revisit in the next few months.

Since her granulation tissue is finally starting to go back down since her trachiitis has been gone for a week or so, he did not burn off the remaining tissue.  It was pretty thick there for a while!

We are likely going to be changing her G-tube Mic-Key button to a AMT – Mini button.   The bubble is less round and more elliptical, which will be more comfortable for Hannah when she is moving around.  Also, it is more flexible, which again, will be better for Hannah.  Apparently, they are switching a lot of their patients over to this newer device.  The main reason for doing this, however, is because Hannah has been leaking just a bit out of her Mic-Key because of the granulation tissue, and this new device is supposed to help seal up her stoma site better so less leakage.

Another good appointment day.  We see him back in 3 months unless something comes up!

It took us just under 4 months, but Hannah has been approved for the Katie Beckett program here in Nevada.  What does that mean?   MEDICAID!!   It is such a huge relief knowing that we have this blanket available for Hannah just in case we have problems with our insurance company.

We will be using it as a secondary insurance, but hopefully this will also give us some more flexibility with our nursing hours.

It was a bit of a reality check though, because I read the part where it says “The child(ren) must have a level of care that would be provided in a hospital, nursing facility or intermediate care facility for the mentally retarded.”   I keep thinking — that is not my Hannah!!  (Goes into my hatred for the term “mentally retarded,” but that is a rant for another day.

This has been a huge weight that has been lifted off our shoulders.  Medical security ‘just in case.”   Yes, we will always have to worry about budget cuts affecting this, but for now, we have a medical insurance security blanket!

On an aside, I found this great article on who Katie Beckett was…very enlightening!

We met with Hannah’s new orthopedist today.  I had three areas I wanted to touch one.

1]  New SMOs (ankle braces)
2]  Left wrist misuse
3]  Affects of W-sitting

When we first got back to the room (after an hour in the waiting room), they did an x-ray of her hips.  She did surprisingly well, as I thought we would have a fight on her hands.  But nope, just singing “The Wheels on the Bus” while holding her hands was all it took for that quick x-ray!

Then we met with the orthopedist.  I wasn’t sure if he was really paying attention to the intricacies that are Hannah at first.  But then Hannah started crawling on the exam table with her left hand upside down (her misuse way), and he made the comment “Wow, is that what you are talking about?”   Then the discussion regarding “to brace or not to brace” came up, and I could tell that he was really thinking about the situation.  We went into the pros and cons about both.  He said that children are much more flexible than we are, and even though it looks like it would hurt, it does not.  That if it really was hurting her when she does it, we would know.  So the question came down to me – Do I want to try and fix what is not just the norm and hinder her playtime, learning, or activity?  Or do we just let it be and just keep trying to redirect her.    So we decided “no brace” at this time.

Then the discussion went on to the SMOs (supramalleolar orthoses – ankle braces).   He actually said the same thing that Dr. Paul at the NIH said.  That wearing the braces are actually more of a hinderance to her than a help because she is not a walker.  He would rather see her in a solid hi-top (like we just got).  He thinks it is more important for her to let her use her other leg muscles to compensate for her hypotonia and ankle weakness at this time than completely restrict her ankle movement to SMO structure.  It would be one thing if she was a walker because then she would constantly be building muscle weakness in her legs, and then it would help in that respect.  But right now, she is a crawler learning to get to a stand.   Hopefully when we get the stander, she will start really building up some strength.

Lastly, we talked about her W-sit.  He says that it isn’t the best thing to do to let her W-sit but, in her case, the alternative is not acceptable.  We can’t not let her sit.  This is the way Hannah moves.  He believes that many therapists are quick to change the W-sit because it is not the norm and it may “in theory” cause problems down the line.  Just like the hand brace dilemma, it is more important to let Hannah explore and play than to worry about whether she sits correctly.  Her nurses, Daddy, and I still work on trying to get her to sit with her feet in front of her, but it is so obviously not a comfortable position for her.  But we will still try.

Overall it was a good appointment.  We don’t need to see him back for a year unless something comes back up.

Oh yeah, and her hip x-ray came out normal 🙂

The New York Times posted an article a few weeks ago about a young boy, Owen Cain, who was diagnosed with Spinal Muscular Atrophy, type 1.   His family had spent thousands of dollars on assistive communicative devices over the years, but they were never able to find something that was a good fit for their family.

Until Owen’s nurse came over with an iPad.

Owen’s world changed.  Not only is he able to play interactive apps, but he is also able to read books and play Air Guitar.

This hit so close to home for me!  I have been working with Hannah on my phone’s piano app, but the screen is small and not very conducive to a toddler with poor fine motor skills.  But that does not stop her.   Our hope is to someday soon get her an iPad as well because there is a huge world of apps that I would love to try with her.

This article was my inspiration for starting this new blog. My goal is to share the information that I find on toys, equipment, software, media, and other technologies with other families of children with special needs.   There is a world of items out there that I have yet to find, and I hope to be able to share all my treasures so that other families don’t need to search as well.

I would like to ask that all Hannah’s faithful followers to please take a visit to either the new blog or to Hannah’s new Facebook page (and ‘like‘ it) in hope to help me spread the news of this new venture!   You are the first ones to check it out!

We met with Hannah’s new neurologist today.  Our choices for pediatric neurologists here in town is incredibly limited, but we felt we had to get a second opinion because I did not feel Hannah’s neuro was being proactive enough for her.   This one was on our side of town, which was a definite plus.

Things did not start off too well because we had to wait over an hour in the waiting room before we were brought back into an exam room.  Then it was another 20-minute wait in the room.  Despite this, Hannah did better than I expected she would.   Well, with the exception of one throwing-up-of-mucous event.  I didn’t like the shirt I was wearing anyway.

When the neuro finally came in, she sat down and looked at my Hannah cheat-sheet (I have a one-page sheet that summarizes her medical history, meds, etc).  She made the comment “Wow, this is only the second case I have ever seen of this disease!”   Of course, I am shocked that she has ever seen one before because none of Hannah’s non-NIH specialists ever has.   Apparently she had a type 2 case 20 years ago.

She was surprised that our previous neuro here has not done any post hospitalization testing or real changes in meds outside of adding the haldol.  I could tell that she did not want to bad-talk to the other neuro, so she made the comment that this ‘testing’ needs to be a priority before we start changing meds around.

What was unique about this exam was that instead of an exam table, they had a full-size bed in the room.  This was a room they used for sleep studies so it was decorated like a bedroom.   It was a GREAT way to exam Hannah because she barely fought the neuro’s physical examination of her because she was so comfy.

I really like this new neuro.  Very proactive, which is what I was hoping for.  Also having her just 10 minutes away is a huge bonus (instead of the 30 minutes).

We have an EEG scheduled next month.  She wants me to help her gather all her NIH, TCH, and other neuro-related paperwork together before our next appointment next month.  Her insistance on “studying up” on Hannah before changing around meds and stuff really gives me a lot of comfort as well.