31 October 2009

What do they know?

Liam had his 6 month check up with his neurologist yesterday. We should have gone a couple of months back but September and October were very crazy months for me due to school starting and coaching volleyball. I kept having to reschedule it and finally was able to get in yesterday. I was anxious to talk to Dr. Brain because we leave tomorrow morning for Liam's first round of HBOT (Hyperbaric Oxygen Treatments) and I was excited to get her take on things let alone the questions I had for her concerning Liam's development.
When she came in, her first question was the obvious, "How is Liam doing?"
So, I told her how he is doing.

I told her how my therapists are amazed at some of the things Liam can do, like eat, and discouraged and frustrated by what he can't do; hold his head up! I told her that Liam propels himself forward when he is sitting or when he is being held. He will get his head up and then sometimes it drops, but for the most part he jerks it forward. I talked about how uncoordinated he is with his arms and how he does not use them for effective play. How he has great range of motion and is flexible but still doesn't use his body effectively. How Liam doesn't fit the average mold of a child with CP.

I asked Dr. Brain what she thought Liam was doing.

She said he might have some dystonia and coupled with lower tone in his upper body it is causing him to do what he is doing.
So I asked her if there were any medications that he could be put on to help with all of this.
She said no.
Um, Ok.
Because I know a few people who are treating their kids with meds because they have dystonia!
I then asked her if she has seen kids like Liam before. She said she had.
I asked what they were like as they got older.
And she wouldn't answer.

She said I shouldn't dwell on the future and just see what Liam does.
Well, I'm pretty positive I already do that! It would have been nice, though, for her to give me a positive example of this situation, but no, Dr. Brain wouldn't say. If I'm supposed to focus on the present and continue to work with Liam, it would be nice to know that in the end there are examples of this all working out.
Then, I asked her the big question that I was dying to talk to her about.
I asked what she thought of HBOT.
Oh, boy.
"HBOT is just a big load of phooey."
"They think preemies receive their injuries from so much oxygen in the NICU so why would you put them through HBOT?"
"It's so expensive."
"There are no studies showing it even works."
"You sit in a small chamber for up to hours at a time and it's so boring."
Those were her responses!
I couldn't believe it.
I just sat there, stunned and quiet, and absorbed what she said. All the while thinking that Dr. Brain had no idea about what she was talking about. That I just wasted my time and money.

First of all, preemies have injuries from the oxygen? How did she come to that conclusion? I'm pretty sure the injuries come from lack of oxygen! And although Liam was never without oxygen from the moment of his birth, he had a wide open PDA that allowed too much blood to flow to his lungs and shunted it from the rest of his body, including his brain. His brain did not receive enough blood flow. It wasn't a lack of oxygen that caused his injuries.

Second, there are numerous studies! My nutritionist just sent me a study done on mice showing HOW HBOT works. It showed that the high levels of oxygen and higher pressure allow stem cells to migrate to the injured areas and heal them. There are studies showing rate of increase in development following HBOT. No, HBOT isn't a cure. There isn't one. But the studies show that it helps!
Third, it's boring? Oh ok. I better not try a treatment for my son because I might get bored. I wouldn't want to do that! Sheeez. I would do the most boring thing you could imagine for years on end if it would help my son!
Fourth, it is expensive. But, Miracle Mountain helps make it affordable and they give you the ability to do fund raising. But most important about all of this is that if you have heard of a treatment that might help your child, I don't care what it costs, you will try everything in your ability to make it happen. And that is why Miracle Mountain operates at cost. So everyone child with CP has the opportunity to receive HBOT!

Shawn and I closed the door to HBOT because we didn't think we could do it. We didn't think it was an option for us. But I saw God open all the doors to making this a reality for us. And I was sorely disappointed to hear what Dr. Brain had to say. I didn't even bother to tell her that we leave tomorrow. I didn't care what she had to say at that point. It didn't even matter anymore.
Her final words as we left were, "We don't need to see you back for another year."
A year?

I pray Liam comes into that room next year and blows her away.

And that would be the ONLY reason I would step foot in her office again.

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28 October 2009

What will it be?

It's amazing how many costumes you accumulate as you accumulate children!

We had a little costume dressing party this afternoon to decide which one would be best for Liam and which one he wouldn't mind wearing.

Costume 1:
The Lemmy monster. Or the grass monster as Ian calls it. There are three eyes on top along
with those cute little fangs on his forehead. This costume is itchy to me but Liam didn't fuss one bit with it on.

Costume 2:
A cute little unicorn. It has a fuzzy horse tail on the backside. The costume is super soft and very warm. Unfortunately it's going to be in the 80's here for Halloween.

Costume 3:
A Pooh bear dressed as a pumpkin. And Pooh makes for a fat pumpkin so there is lots of
stuffing in this one. It looked very cute on.

Costume 4:
A homemade bunny costume. Including the cottontail on the back.

*Notice Liam staring at me. He's just hoping it's all over at this point. He decided to just lay there, hold still and hope I was done.

So, which costume do you think we picked?

Which one do you like?

And what are you going as for Halloween?

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Costume confusion

Is it bad that I still have no idea what Liam is going to be for Halloween?

Liam's friends think he should go as Harry Potter. I guess his sweet little glasses and a little lightening bolt would make a simple and adorable costume, but I didn't think it would be right with out having a cloak to go with it. And since we couldn't find any Harry Potter costumes in Liam's size, he'll just have to wait and be Harry another year. When we can do it right.

Maybe he should go as a vampire. They seem to be all the rage these days.

I am not liking the holiday as I usually do since he can't sit up. But soldier on we must and I think I will dig through our old box of Halloween costumes and see what I can find. If anything, it will make for fond memories and at best, Liam will have a cute little pumpkin or bee or bunny outfit to wear for Saturday night.

And yes, boys can dress as bunnies.


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27 October 2009

Huge things

Time has gotten away from me over the last week and I have been unable to post like I usually do! My apologies to my faithful 27 followers!! I shall not let you down again.

First things first:


Thank you to the following people who have helped Liam by donating this past week:

  • Kristin Quail
  • Dawn Morda
  • Christi Salzsieder
You all are awesome. Really.

I can't believe Liam and I are leaving this coming Sunday for his first round of HBOT! The time has flown by since we decided to give this oxygen stuff a try and I am excited to see what changes God has planned for Liam.

Although the rest of the family is sad to see us leave for so long (24 days), I am praying the strain will all be worth it. It isn't wrong to expect the unexpected. Because God is able to do much more than I can imagine. And I love surprises.

Like this one:

Liam decided on Thursday, the day before I left with my hubby to go out of town with friends for three days, that he would start lifting his head up while I carried him on my hip.

I was afraid that while I was gone, he wouldn't be doing it when I got back. But sure enough, I carried him around today and he was lifting his head up all by himself!

This is HUGE people!

Normally, he will snuggle in close on my shoulder and not lift his head, tucking it down and keeping his chin on his chest. Or, when he does decide to lift it, he throws it back too far and then has to try to get it back forward.

But today, he was lifting it, with control and holding it in a normal position and keeping the position for up to 10 seconds at a time. I know, you are thinking ten seconds isn't long.

But for Liam, it's HUGE!

He even had one time where he turned his head to look at his dad while keeping the noggin under control. I mean, really, this is very exciting news!

Did I mention this is HUGE?

Alright, alright, I'm moving on past the bragging....


Liam had to go in for his monthly, mostly semi random weight check ( I never seem to manage getting there monthly) and I was happy as a clam to see he had gained 3 ounces!

Yeah, yeah, what's 3 ounces you say?

Well, at least he didn't lose weight!

Sheez, can ya'll just be happy with me for once?

No, seriously though.

Liam has been vomiting a lot lately. His reflux has been rearing it's ugly head and literally roaring at us several times a day. With all of the calories that have not been able to make it to his colon, I had assumed Liam would have lost weight. So, it was with surprise and elation that I saw a 3 ounce gain! Yeah, Liam!

He also got two more of his 18 months shots. We should be caught up with those sometime after Christmas. When he's 2. But who's noticing?

And our lovely new (new to us, not new to the practice) pediatrician said she couldn't wait to see how things go for us at Miracle Mountain and that she wanted to see us back right away when it's all done. It was so wonderful to have her fully on board for these treatments considering the first ped in the practice I talked to was not for it at all.


I have more updates to come later.

Because I've got additional exciting news that must wait for their own post!

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19 October 2009

That's what she said.

We were told when we left the NICU that Liam already had BPD (bronchopulmonary displaysia) due to his premature lungs and because of his 8 weeks of being on a ventilator (4 of which were on the high frequency oscillator due to the development of PIE (pulmonary interstitial edema). His early x-rays showed he had lung damage. It shows up as white marks on the lungs in x-rays and makes the lungs look spongey. It is one of the most common causes for chronic lung disease in children. White male infants are in the highest risk category for this disease. We knew getting sick for Liam could be deadly due to the existing lung damage and because of his underdeveloped lungs. He was classified as having chronic lung disease before he even came home.

In order for Liam to undergo the HBOT treatments we had to have an x-ray done of his chest. We were thrilled to discover that there were no more existing signs of BPD on his lungs. Whatever damage had been present was no longer visible. Liam's lungs have either already regenerated the new lung tissue needed (lungs continue to develop for 5-7 years) or he has been healed.


And I thought Liam's lungs were going to be his toughest obstacle way back then.


See that fancy little neck collar? Liam loves it.

Well, no, not really.

But, he doesn't hate it either. So that's a good thing.

Courtesy of our PT, she got this handy dandy little collar for Liam to be able to work on head control. It won't hold his head up for him. He can break through the collar because it's just made of some nice cushy foam. But what she said it is supposed to do is give Liam the sensation of holding his head up properly when on my hip. And when he's in his high chair he has less of the forward thrusting of his head giving him just the right amount of pressure to remind him where his head needs to be.

The first time we used it in the high chair he was able to sit and watch almost his entire DVD before breaking through the collar and falling forward. That was an incredible feat for him.

We are now using it as one of the many tools to get Liam to hold his head up. For good.

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15 October 2009

October 15th

Did you know that October 15 is National Pregnancy and Infant Loss Remembrance Day? Many people aren't aware that this day has been designated a national day of remembrance for miscarriage, stillbirth, and infant loss.

In honor of Pregnancy and Infant Loss Remembrance Day, grieving parents light a candle at 7 p.m. in their respective time zones to create a wave of light around the world in memory of babies lost to pregnancy and infant loss.

In addition to October 15th being declared a remembrance day, October is also National Pregnancy and Infant Loss Awareness Month.

So, light a candle, say a prayer, or send a card to someone you know who has lost a child and tell them you are thinking of them this month.

A parent never forgets the child they can no longer hold in their arms.

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09 October 2009

Just not good enough

I was asked what we would do if we received more than the money needed for Liam to complete the round of 40 HBOT dives in November. The answer is very simple. We plan on doing another round about 4-6 months later as long as we can afford to do so. So, any money received above and beyond this round of 40 dives will be saved away so we can go again.

HBOT isn't something that just stops because you've done the 40 dives. If you see changes in development than you need to continue to do them! Sometimes certain injuries take many many dives to see any changes. Any money raised or given won't be used for anything but treatments for Liam. We also in the interim between trips would like to be able to go to Wilmington for treatments in the soft chamber that they have there.

It was hard to say we could use the help and I'll be darned certain what we receive will be used only for Liam and the help he needs.

I am so grateful to everyone who has helped us out. This trip could not have occurred without you. Details are still getting ironed out but things are started to fall into place and I'm getting a bit excited about it all; nervous too, but in awe of how things are all working out.


Thank you just doesn't seem grateful enough to say to the people who have helped us out so far. Those words just aren't good enough. Even so, my gratitude goes out to these people this week:

  • John and Melissa Giglio
  • Lorena Smith
  • Jeremy and Ashley Johnson
  • Shanon Wooley
  • Ginny Cashion

The smallest act of kindness is worth more than the grandest intention. ~Oscar Wilde

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05 October 2009

Uncharted waters

I have a friend whom I met some years after the loss of her little girl. Her sweet babe was diagnosed with cancer and she lost her life before even living one full year. I knew, no matter what, that my friend was no longer the woman she had been. She never had a palpable sadness, but there was something distinct about her. Something in her life had defined her and you could tell. I couldn't imagine what she had gone through. And I couldn't stop thinking about how that must have felt.

But not any more.

The events in the last 2 years have certainly defined me. I am now the mom who has buried a child. And not one, but two.

I am now that woman.

When twins are mentioned, I can feel the tension in me and people around me. When preemies are mentioned, when death is mentioned, when pregnancies are mentioned, I can feel it. I am not the same. And I don't expect people to act any differently. I am different. My life is different.

And it's okay. I am learning to live with it.

There is no way to go back to who I was before. It is the past. That was a whole different journey. But the future is a new journey too.

I can only move forward, sailing my boat for uncharted waters.

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01 October 2009

Thanks are in order


A BIG thank you goes out to this weeks donors for Liam's HBOT treatments:
  • Matt Arthur
  • Phillip Davis
  • Ann Marie Kolkhurst
  • Melodi Pekarchik
  • Molly Shepard

Now, I know some of you don't want to be called out in public for a thank you.
But unless you state you want your donation to be anonymous, I want everyone to know what great friends Liam has by telling the world (well, my little blog world) how awesome you all are!
We couldn't do this trip with you!


The only people with whom you should try to get even are those who have helped you.
~John E. Southard

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