28 January 2011

He has potential

Liam had another great week with speech and OT. Those are becoming my favorite therapies by far. It's nice to go into a session and have him meet the goals, especially since he never meets his goals physically. It seems like each week he's getting marked off for meeting a new speech goal.  For OT he was able to pick out the animals that they asked for, just like last week when he picked out the right colors they asked for. This time Liam had a choice of two different animals and was asked to pick a specific one.  And he got them all right.

He also participated in a motion song with his OT. Since Liam really responds to music, she sings him all sorts of songs, one of which involves raising his arms in the air and then lowering them. For the first time this week, he was trying to do it in time with the song. It was adorable.

I get the feeling that we are going to be making up songs for anything and everything before too long.

Wipe your nose
Wipe your nose
Your snot is really green
It's on your face and in your mouth
Just wipe it on your sleeve.

*Sung to Jingle Bells

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25 January 2011

Endocrinology isn't the answer

I got a phone call from the endocrinologist last night. She said everything from Liam's blood work up looked good. All the function tests they did of his thyroid, pituitary, etc looked fine and within normal limits. The check of his growth hormones looked good and within normal limits too. The only one that was low was his cortisol level but even with it being low, it was still at the low range of normal*. 

It was kind of a big let down to have the results all be normal. 
Two different Dr.'s have mentioned trying Liam on growth hormones because they've seen it do some cp children good when it comes to low trunk tone. One little boy who lives near us was a lot like Liam (supposedly, I don't know as I've never met him) and after going on the growth hormones he is now able to sit a year later.

I had asked the endocrinologist about trying the hormones when we were in the office. Not unless he was deficient somewhere would they use it. She said she would ask around to see if anyone else knew if it was indicated for low tone in cp. And when she called last night she said that the Dr.'s she talked to said no as well. I can understand that. It isn't like he's deficient in his hormones to need synthetic ones. But we'd been told it might help and told to check it out.

I was just hoping that would have been the key for helping Liam. 

I was hoping he could just take a pill and it would all go away.

*The cortisol one didn't surprise me. Cortisol is released in response to stress. And Liam's a pretty laid back kid.

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20 January 2011

Blind but yet he sees

Today Liam had a combined therapy session with his OT and PT from school. They come to our home and work with him here. Our PT was holding him while the OT was singing songs and using a powerpoint presentation on the computer with different colors of fish. Then she held up two pictures of different colored dots. Each time she would ask Liam where a color was and each time he picked the right color. And he did it quick. It was one of those moments where we all looked around and thought, 'I'm so glad we were all here to see this together!".

The OT finished up with a color I have never taught Liam, purple. She paired it with orange, which Liam does know, and asked him where it was. And he got it!

I was so very proud of the little man!

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18 January 2011

Knuckle under

I can't remember if I posted a while back that we lost our home aid this last year. And I'm too lazy to go look and check right now. I may have just posted it on my facebook.

Anyway, we lost the aid we had this summer past. And I really liked her. She worked well with Liam and when I was working with Liam she would get busy cleaning my house. It was a win-win. But, the agency she worked for didn't treat her all that well. She had to drive an hour to my house and her time wasn't compensated. Also, she was a real nurse. And Liam doesn't need nursing. He just needs a playmate. She wanted somewhere that she could actually use her degree in her chosen profession. So, she quit.

The agency attempted to get another aid in here for us but, I don't like having new people come into my home, in our safe place, and take care of my son. That's my job. And while I appreciated the break that our previous aid was able to give me, I didn't enjoy the thought of bringing in someone new and trying to build a relationship all over again. It's just not fun for me. I was also starting to have problems with the agency myself (like lying) and I didn't want to work with them anymore.

I talked to my case manager about not having an aid and what it would do for Liam's medicaid and she said it would be ok not to get another one. I was surprised since I had to sign papers saying I would allow one just to get Liam medicaid in the first place and now she was saying he didn't have to. Awesome!

I did miss having D around to help. She was really good. But I just didn't want to go through the whole process again. So, if I didn't have to, I wasn't going to.

Then November rolled around.

When Liam turned 3 in November he had to be reevaluated for the program we are in that qualifies him for medicaid..  The requirement came up by the head honcho in Raleigh that Liam needed an aid again.

This time, instead of the 12 hours a week we were getting, we could drop down to only 6 and still keep Liam qualified. I liked that plan. A lot.

For three days a week I have a new aid come in for only two hours at a time. We just met her this Monday so she's only been here twice. And she's very quiet. But so far so good. She doesn't seem like an axe murderer yet.

With the two hour time slot, I use up her entire first hour staying by Liam's side in his stander. Since he needs help with his head, she can stay by his side while he plays and watches his movies. And I get to get a few things done. I actually got a bathroom clean this morning!

While I've had to give in to having a stranger in my home, the short time seems like it's going to work well. It's just enough to get a few things done but not so much that I feel someone has come in and taken over my job as the mom.

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15 January 2011

Quadreplegic's success is 'phenomenal'

The enclosed news article just hit the wires and is very encouraging! It should be front page news on Yahoo.com, etc. This will eventually be a standard method of care for many types of problems.

The physician involved uses bone marrow derived stem cells. He takes the sample and has it flown to Israel where the cells are grown out in a laboratory. He then has the patient fly down to the Dominican Republic where the expanded cells are injected. He apparently has had very good success with patients suffering with severe "end stage" heart disease. The tab is a mere $64,000. You can click on the website below to see a picture of this former quadriplegic standing up.

This is a similar procedure that we want to do for Liam. Except that the location we would go to in the DR would not have the cells flown to Israel.


God uses oxygen and our own stem cells to heal our damaged bodies. Very cool indeed. 

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13 January 2011

Smelling the beautiful and the ugly

Most of the time smells can garner more emotion out of me than mere sights and sounds. Nothing is more memorable than a smell. One scent can be unexpected, fleeting, conjuring up long dormant memories. Before I know it a smell can take me to places far beyond my present state.

If I smell a strong plastic odor I am transported to my youth and the plastic playhouse on a pvc frame that I would put up in my backyard. I would play with my dolls in it for hours, on the blanket, playing house.

If I smell honeysuckle I am again transported to my youth and the sweet summer smell of the honeysuckle in full bloom, growing along the fence in our backyard. Which then prompts visions of our pool, friends, and carefree days.

At yesterday's Dr visit, I washed my hands in the bathroom and was instantly transported to a different time and place simply by the smell of the soap.

I was no longer in the bathroom. I was standing at the entrance to the NICU, signing in to go visit my tiny son. I was washing my hands all the way up to my elbows in order to not bring in any germs to his fragile, see-through body. My mind whirled as I remembered the fear as I stood washing my hands and wondering if I would be confronted by the Dr telling me, again, that my son was very, very sick. I felt the anxiousness as I walked down that hall to his pod and hoped that there was not another team of nurses and respiratory therapists surrounding his bed, alarms going off in a full range of scale.

In a microsecond, my mind was transported and I could do nothing to change where it was going. The smell of the soap and the strong emotion it evokes are reminiscent of a time that I would never want to repeat in a million years. And yet I relive it every time I smell that soap.

Nothing revives the past so completely as a smell that was once associated with it.- Vladimir Nabokov

Do you have smells that trigger a strong response in you?

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12 January 2011

Endocrinology is a fun word

Liam had an appointment today at the same satellite location as his GI and former neurologist and I assumed we'd be seeing the nurse practitioner again today that we saw last month for GI. Instead we actually got to talk to the endocrinologist.

If you remember, last month I was told that Liam was not getting enough calories and we needed to up him to 5 cans a day from his current quota of 3. We still have not been able to get up to 5. On the best days we were getting 4 1/2 cans a day. But we were not able to sustain that amount for long before he started vomiting again. I backed off and he is getting a full 4 cans for now. But still, it's no where near where the GI said he should be.

Imagine my shock when Liam got on the scale today and he gained a whole pound since last month. He actually gained 1 lb 3 ounces! I couldn't believe it. I don't know how that happened. He's vomiting again and it's still not the goal amount of food they said he needs.

When they checked his height he had shrunk.

Well, obviously that didn't happen. At least I'm pretty sure that didn't really happen. I just think he's really hard to get an accurate height when you have to ram his head against a board and stretch out his leg as far as we can. You're libel to get different heights on different days.

I mentioned to the Dr that Liam is small for his age (only the 5th percentile), and that he has always poked along on his height and weight (except for this past month!) and we have always struggled to help him grow.

She asked if we had ever had any specific tests to check his cortisol, thyroid, pituitary, etc.  And we haven't. So, she ordered labs to have everything checked out. We should get the results in about 10 days.

We've had the idea of Liam going on growth hormones for quite a while, not only because of his slow growth but because we know of someone like Liam who started the hormones and was able to sit within a year of starting them.

I asked the Dr about trying them on Liam but she was very hesitant to think that he would need or benefit from them.

I honestly don't expect anything to be wrong with his labs. But it will be nice to have one more thing checked off on the 'to do' list.

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Liam's having way too much fun with the paper. I should get one of these for the house.

10 January 2011

HBOT- What to do?

In the quest to help my son, of all the most cost effective treatments available, so far HBOT has been a key component in his healing.

Hyperbaric oxygen treatments are not new. They have been around for decades. And there are numerous reports and studies showing that it heals. Certain states even have Medicaid paying for it as a specific treatment for cerebral palsy. And there are several insurance companies paying for it now too. Not only for CP but for autism as well. Ours just isn't one of them.

I found out from a friend that there is a monoplace hard chamber about an hour away from me in Morehead City. After several phone calls I finally got a hold of the Dr. They treat everything from gangrene to radiation problems, ulcers to multiple sclerosis. But not cerebral palsy. He said it wasn't a peer reviewed, acceptable form of treatment with the association he belongs in. As the Dr. said, "You wouldn't have had to go to some far away place for hbot if it was an acceptable form of treatment." Sigh.

I explained to him that it was, that there are centers everywhere treating CP, what information I had on it and what it had done for Liam. He asked if I could back that up with information from Liam's Dr or his therapists on his improvements. Heck yeah we can!

He asked me what I paid for our previous dives. I told him we paid $3000.00 for 40 dives spaced twice a day. He did some quick calculating and said that that was about the same price they would get reimbursed for from BCBS if they were to bill them. So, he could foresee us doing 40 dives for only $3000.00.

He then said that if I could get a script from his pediatrician or even just a phone call from her letting him know it was approved by her, he would let Liam dive. Even though he's never treated kids with cp.

Three grand for 40 dives and I get to come home every night. No long drive across the state and staying away from my family for 3 1/2 weeks. No reorganizing everyone's schedules to get everyone where they need to be when we only own 1 car and I took it with me...


It's a monoplace chamber.

I'm not sure how that will work. He said I can lay in the chamber with Liam myself if it's too much for him to be in there alone.  There is no hood over his head like before at Miracle Mountain. Since it's just a monochamber they flood the entire chamber with oxygen. So Liam and I would both be getting the treatments.


We don't yet have the three grand.


I am praying that God will make a way. He has before and He can do it again.

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06 January 2011

Follow up to the follow up

Remember my post about the new neurologist we saw for Liam? He was against stem cells (said they were going to be stopping it at Duke), was against HBOT, and said Liam had athetoid CP? Yeah, him.

I just find out yesterday what he wrote in Liam's report and sent to the team of therapists at our clinic.

Apparently it was so out of line (out of touch with reality is probably more applicable) that his PT said she kept flipping to the front of the report to make sure he was talking about the same boy! She said nothing he wrote sounded like our Liam.

She paraphrased what it said.

First off, this neuro wrote in his report numerous times that Liam was blind. Yes, he is technically blind, but the little dude can see! You've seen the videos of him picking out shapes, colors and pictures. He isn't totally blind. yes, it is a disability but she said he made it sound in the report that he couldn't see anything.

Secondly, he said I pushed to try Sinimet for Liam and that he didn't think it was going to help at all but that because I "pushed" it, he relented. None of that is even true at all. I asked him about trying this medicine and he said we could go ahead and give it a try. I didn't force anything. And remember he said just to call him if I felt it was working...no follow up to actually SEE Liam on a medicine that you have to be weaned off of once you go on it. And guess what?  This supposed non-helping medicine has helped Liam's ataxia a lot! He was so calm in therapy yesterday that they remarked about how controlled his arm movements were!

Thirdly, and this is the one that pisses me off the most, he said that he didn't think continuing therapy was going to help Liam but that if I wanted to continue to go he wouldn't say no to it!

I was so very, very mad.

This Dr. doesn't know a thing about anything! And he's a specialist!

Thank God that Liam's dependency on therapy is not based on his report, because if it was, he wouldn't be able to get it anymore!

And even though I knew I didn't like this Dr's attempts at practicing medicine on my son, it just cemented for me that I would never step foot in his place again.

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03 January 2011

Using a felt board for learning.

I realized once Liam started picking out the pictures I asked for on the felt board after singing a song that we could use it for so much more.

I decided to start with the basics and just use different colors and shapes.

I took this video the second time I sat with him and used the shapes.

Learning shapes & colors from Jennifer McIntosh on Vimeo.

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