Archives for November 2010

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.

Hannah is definitely on the mend.   She only has 2 more days of Cipro left for her trachiitis (pseudomonas), and we are finally starting to see her old personality come back.  She is not as exhausted all the time (no more 3-long-nap days), and she is willing to be more engaged and is wanting to be more active.  She also had a fantastic therapy session with her Early Intervention specialist today, so I knew my “old Hannah” was coming back to us.

The older kids had their Fall Festival at their school tonight.  It ran from 4 pm until 7 pm.  It was a big event for the school, and my sister-in-law, nephew, and two nieces were going to come join us.

I was getting kind of hesitant about going around 3:30 pm.  Hannah had not taken a second nap yet, which was unusual for her.  She usually crashes after her therapy session and sleeps until around 4 pm.

But the kids were so excited to go.  I decided that since Hannah had such a great day and was obviously feeling better that I would take a chance with her.  So we all piled into the car and headed to the Festival.

She did pretty well in her stroller for the first 20 or 30 minutes or so.  Then I could see her exhaustion setting in… the eyes rolling back, the droopy head, and then the crying.  That silent cry that always makes me nervous because I fear another breath-holding spell (leading to seizure) again if I don’t pick her up and console her.

From that point on, I had to carry her.  She clung on to me but was still awake.  After about 20 minutes or so of holding her, my arms and back were starting to hurt.  Of course, she took that as a cue to cradle down in my arms and get into her “I’m going to sleep” position.  She fell asleep finally, and after about 5 minutes I put her in the stroller.

Of course, she immediately woke up and started crying again.   From that point on, she was inconsolable.  No matter what position I tried or how I held her, she just would continue crying and thrashing.   But the older kids were having such a great time that I felt I had to try everything not to cut the night short and head home.

I thought that maybe if we sat down and let the kids grab a bite that I would be able to get her back to sleep.   But go figure, the food area was right next to the loudspeaker and all the noise and activity.  Hannah went into sensory overload, and I could not get her to calm down at all.

I had to admit defeat.  I told my sister-in-law that I had to take Hannah home.   She offered to keep Abby and Ethan with her and take them home later, but the truth was that I needed to have the kids in the car with me to help me try and get home.  Hannah does not do well in the car as it is, and I honestly don’t know how I would make it home without having to stop 50 times along the way.

I told the kids we were going to have to go.   Ethan and Abby were disappointed.   But Ethan accepted it immediately and worked on helping me get the stroller together for the walk back to the car.  Abby was a bit more upset.   My nephew, who was not used to these “well Hannah is upset so our plans change again” episodes, was so adorable and kept saying “It’s okay Abby.  I’ll come to your house and we can play.”   Even though Abby was upset, it was very short-lived because she knew that we needed to get Hannah home.

As my sister-in-law and I parted ways in the parking lot of the school, my kids and I were trying to get everything in the car.  I tried to get Hannah into her car seat, and she started with her hyperventilating spell and was so horribly upset.  I kept thinking to myself “Please, not here.  Please, calm down.”  It was horrible.   As Abigail got into her seat, I took Hannah from her car seat and sat up in the front passenger seat just trying to rock her.   I started the car and blasted the cold air on her back because she was sweating and very heated from her agitation.

I didn’t realize how amazing this was at the time, but as soon as I started rocking Hannah in the front seat, Abby came over to us behind the seat and started singing “Twinkle, Twinkle, Little Star” to Hannah (this is our “go to” song when we need to try and calm her down).    Then, I heard the back door of my mini-van shut.  Ethan had taken it upon himself to empty out the stroller (huge diaper bag, suction machine, etc.), put the stroller in the trunk, and organize Hannah’s bag and suction machine in their respective places we keep them in the car.

About 10 minutes later of sitting in the car, Hannah finally passed out.  She had worked herself up so much that she was still trying to catch her breath as she slept, but she was calm and comfortable.  I was able to get her into her car seat.  As I got into my driver’s seat, I saw Abigail covering Hannah up with a light blanket.   She held Hannah’s hand the entire way home.

As we all piled back into our house after our Fall Festival adventure, I put Hannah on the living room floor where she slept for over two hours.   The other kids, my sister-in-law, and I shared a quick McDonald’s dinner that my sister-in-law picked up on the way over.  Then the other kids went off and played — my nephew and Ethan on the Wii, and Abby and my older niece (almost 2) in my office.

I am so proud of Ethan and Abigail for their sacrifices they make for Hannah.  They are so damn good with her.  Even though they may initially complain, it never lasts long, and they never blame her.  Even my nephew surprised me tonight because he was also having such a good time at the Festival because I thought he would not understand why we had to just “up and leave.”   But he did.  He was awesome about it.

I know that Hannah has her limitations, and I know that I still have to keep trying to push her a little bit each time so that the older kids can still have their fun and activities.  I just feel so lucky that the kids accept that their little sister just can’t handle it all the time and love her unconditionally even if it interrupts our plans.