30 March 2010

Just a day in the life.



Ooooooh. Ooooooh. Ooooooh.

Can you tell that's what he's saying here?




This is what I got when I tried to get him to say Mama.

It's his silly sideways, tongue-stickin' out grin.

We get it a lot around here.




And now here he is trying to get away by sitting up. He gets pretty far before he lays back down and does it all over again. This boy has some serious abs.



And...

Liam finally lost his thumb nail. I had to keep cutting off sections of it as it came apart. He then actually ended up ripping the top section off when he caught it on his stander. He cried when that happened.

But he is such a trooper.

His g-tube got popped out by the dog this week and although he cried for a second he was more bothered by the whole shock of everything than he was the actual losing of his button.

And then a few days later, I was picking him up from his car seat and I heard a pop and saw that it had popped out again. And he didn't even flinch when that one happened.

Such a trooper.


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25 March 2010

MRI results-2 years later

Liam had his follow up with the developmental pediatrician today. Overall, it was a great appointment (all things considered). Not only did I get more information from her when she looked at his MRI than I did with the neurologist, but she is running a few more tests to check out some things.

If you all remember back in October, I posted about our final visit with the neurologist. Originally, at our very first visit, the neuro told me that Liam's cerebellum was small. When I pushed her for more information and asked how small, she just said that it was small.

Today, the DP looked over the MRI frame by frame with me and showed me everything that was going on. A few things I already knew, like Liam having a thin corpus callosum, but there was so much that I didn't know and it was quite shocking that the neuro left out so much information.

Now, the DP will tell you she is not an expert, but she seemed to know what she was doing for sure. She said that not only is Liam's cerebellum extremely small, it has scar tissue around it. And the scar tissue reaches into his brain stem. The brain stem controls breathing, heart rate, temperature (basic vital functions), etc... and Liam does just perfect with all of that. So, the scar tissue around his brain stem doesn't seem to be a problem. But his pituitary is right there with the scar tissue and that effects the thyroid. His basil ganglia (which everyone asks about because it can cause a lot of problems if there is damage there) looks great! He does have the pons which I was concerned about because it is right at the cerebellum and since that was missing, I was afraid the pons would be screwed up too. But it looked great too. The big concern she could see was the scar tissue. She said to her, it looked like Liam had had a stroke at some point.

He does have larger than normal ventricles but that isn't concerning either.

And the other big thing?

She couldn't find any evidence of PVL (Periventricular Leukomalacia).

Remember when I said that Liam had it (diagnosed in the NICU on week 3), then he didn't (according to the follow up ultrasound when we left the NICU), then we were told he did have it (at our first neuro appoint) but that it was insignificant? Well, she looked it over several times and couldn't find any evidence of PVL.

Now, I'm not saying he doesn't have it, but it must be small if she can't even see it.

So, what does all of this new information mean?

Well, it's nice to know exactly what the extent of Liam's brain damage is. I've been in the dark for so long and it's good to finally know some results. It was great to be able to look over the MRI with a Dr and have them explain everything to me.

Because Liam looks like he has scar tissue, and because that is a signifier of a stroke, she wants to run some blood tests to check Liam's coagulation. Strokes do run in my family so she is just checking things out for him. And she is also running tests to check his thyroid and make sure it is functioning the way it should be since there is scar tissue around the pituitary gland.

We should have the results of those tests in a weeks time.

So, even though I got news that Liam may have had a stroke and that his cerebellum and brain stem are scarred, he has large ventricles and a thin corpus callosum, it's good news to me. To finally know a little more of what's happened to our little guy is a relief. It doesn't change anything we do for him, but it does change our knowledge of what he has gone through.


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23 March 2010

A sunny disposition

I have talked before about how much Liam loves to laugh. And he really does. Most people don't ever get to see it because he doesn't laugh at the typical things babies and toddlers laugh at. He doesn't have the vision to enjoy the small details and the little things, but he loves the big stuff. He loves movement and people dancing. And he loves bouncing balls.

video

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19 March 2010

Liam's New Gift



If it wasn't for the support of online moms, I think sometimes I'd go crazy. You see, I don't personally know anyone else in real life (IRL) that has a micropreemie with cerebral palsy. I do know of one micropreemie but she is not facing the challenges Liam does- not even close. I don't even know anyone IRL that has a child with cerebral palsy!

Because of the internet, moms all over the country are only a quick 'send' button away. I joined an online support group for micropreemies a short time after bringing Liam home from the NICU, but after a while, the issues and needs Liam had were quite different than the rest of the group. I found myself not fitting in. I then found an online group for moms of kids with CP and to say that it has been a wealth of knowledge is no exaggeration.

Liam is at the point where he has outgrown his car seat carrier but we keep using it because it is so handy to carry him from one place to another. But there will be a time very soon where it will no longer work for him. Because he still doesn't have head control, he needs either a special needs car seat or a high end seat that is commercially available.

The special needs seat is $700.

The commercially made ones that work for Liam are around $300.

This is where my online community of moms comes into play. I had asked the group what they do when it comes time to transition their kids. Because every state, every group and every situation is different, the answers were a bit varied, but it seemed quite a few people were able to get the seats paid for through specific organizations.

A couple of those organizations were Children's Miracle Network and the Easter Seals.

I contacted CMN first and I have to say that their response time is amazing! They are friendly and helpful and she went out of her way to figure things out for us. Unfortunately our local chapter does not have a budget set aside to assist families in our situation. I then contacted the Easter Seals and they do have a program!

Our local Easter Seals will help families of kids with special needs purchase needed items that insurance won't pay or medicaid doesn't cover.

Because Liam's car seat fell under that category, they sent us a check for the total amount for Liam's new high end commercially made seat.


And I never would have known about these kinds of programs if it weren't for the online community.

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16 March 2010

Just like mom

Liam is a great sleeper. After his surgery he was waking up at night, several times, and I was a bit freaked out about it because he normally never wakes up. That lasted for the first two weeks home. But now he's back to his usual self-sleeping soundly through the entire night.

This is how I found him this morning.



And this is exactly how I sleep...with my mouth wide open and arms raised high above my head.

His snoring is louder than mine though.

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14 March 2010

OT changes

I have given my OT a heart condition and she must take a 3 month leave of absence.

It's actually her love of kids like Liam and her desire to work with them more than she is able to that is giving her heart fits. She only has time to see Liam once a week and, bless her heart, her own kids are always sick meaning she misses usually one session a month with us.

Liam should be getting at least two sessions of OT per week.

We have loved our OT and enjoy having her work with Liam, but three months of no OT is too long to go.

Since her heart is all ferklempt now, we will be going to a clinic 45 minutes away for treatments. Grrrr. I hate having to drive that far! Having the therapy take place in our house has been a blessing. But, on the positive side, Liam will be getting two sessions a week from here on out. And that's a great thing.

And our first OT will still be checking in on us every now and then. Hopefully with a fully healed heart.

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11 March 2010

Where are the Parents?

This article kind of hit a soft spot for me.
I live such a different life than I did before. And I wonder how many people around me actually understand how it is. For the most part, my kids understand, but sometimes they don't get it either. There was a recent event that one of my kids wanted me to participate in and accommodations would have to be made in order to do so. It was just easier not to do it. I wonder what coaches, school staff and parents of friends think when I'm hardly ever around. Do they think I'm not an involved parent. Do they think I don't care. Do they write me off as a person who makes excuses? It's not by choice. It's definitely not.

Where are the Parents?

By Sue Stuyvesant, Parent


Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

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09 March 2010

Trying something new.

I took Liam to a developmental pediatrician for the first time. We had never been told which developmental pediatrician to see. I didn't know they existed. In fact, we have never been told that we should even see one. Hmm.

Anyway, I took Liam to see this Dr. last week and really enjoyed my time with her. She put her hands on Liam and thoroughly checked him out. She got his entire history and she listened to all of my concerns.

She loved that Liam was blowing raspberries and was talking so much. She said that was a good sign.

She said that Liam was mostly affected by his CP on the top half of his body (which we knew) and that she felt like he wasn't able to hold his head up yet due to the lack of control on the top. She felt he had Chorea type movements and that they are what is mostly preventing him from gaining head control.

I don't know if she's right. If you read the type of movement that Chorea is, it says that the movements are purposeless. Liam's movements aren't purposeless. He tries to grab toys and he tries to sit up, he just can't yet.

She thought Liam might benefit from trying Artane. It was originally used as an antihistamine. It is a drug that can be used to help with muscle control, Parkinson's, stiffness, etc.

I know of some moms who have used it but they weren't able to continue on it because it gave their kids bad side affects (emotional behavior issues).

I told her we would try it and see how it goes. We have started him out on only 1/2 teaspoon twice a day and will see after a month if we have noticed any difference.

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05 March 2010

It's a straight shot.

The graph above shows the three visits we have had for Liam at the GI. They were random ages...approximately 19 mo, 22 mo, and 28 mo.

For our first visit, Liam was no where near the curve. Not even close. But you can see that at the visit this week, Liam finally got on the growth curve! He's right at the 5th percentile.

Better late than never, right??

On their scale, Liam weighed in at 24 1/2 lbs! And they checked his BMI. They like to see it between 15 and 25%. Any guesses?

Liam was at 50%!

It so crazy to love and hate this g-tube all at the same time.

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03 March 2010

Distinction

There is an organization in NC for children with impaired vision called the Governor Morehead Preschool. This provides us a vision teacher who comes to our home twice a month (used to be every week but Liam 's vision is so much better now) and helps to give ideas on what things to do to help Liam. They also have an OT at the state level who will come visit only if requested by our vision teacher. We had Ms. Sue come last week to talk to us about Liam's eating. It was largely at her prompting that we chose to go the route of the g-tube so I was happy to visit with her and bounce ideas around.

She reiterated what I knew, which was that we need to make eating fun for Liam. But she went a bit farther than I was thinking and said that we should let him taste whatever we are eating. Be it barbecue sauce, pickle juice, or salsa, we should let him see it, touch it and then taste it.

My concern was that so much exposure to so many flavors would not be wise, but she said that he is the age now that little ones would be eating what we make, exploring lots of new tastes and because meals are a family affair, we should include him in them all.

Our foray into flavors this week consisted of oranges, maple syrup, spaghetti sauce, gravy, and more.

I'm not sure he is loving all the new flavors but at least he is always willing to give things a try.

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GI follow up

I finally took Liam in to the GI for his post op check up.

They didn't harass me for being almost 2 weeks behind. =)

I actually got some really good information.

Liam is having major granulation tissue problems. It originally started at the one spot I showed you guys before and has spread all the way around the stoma. It makes his tube leaky and ugly looking. It definitely isn't the pretty one you see in the take home g-tube video!

I realized, after watching the Dr, that I do not use enough silver nitrate to head off the tissue. I was following Dr. Kid's example and just putting a bit on the edge of the tissue, being a bit too conservative. Dr. Gut slathered the entire stoma with the nitrate, numbing the skin in advance and sealing it to prevent any damage to healthy tissue. By the time we got home over half the tissue had sloughed off. Once we get the tissue down to a small size, I can keep it away with some steroid creme.

I also got to meet with our amazing nurse practitioner and the nutritionist who shared my concerns about Liam's continued use of Boost Kid Essentials for all of his caloric needs. I hate to admit that I only recently looked at the formula and noticed that the first two ingredients are water and sugar! I couldn't believe it! I've been feeding him this stuff for over a year!

They also set up a feeding schedule that will hopefully help him with not only his reflux but will help me take away the night time feeds. As it stands, I am feeding him 16 ounces while he sleeps! I am not fond of that idea at all, reflux can continue unabated through the night and feeding him stuff to reflux is not the greatest of ideas.

So, we are switching him to Nestle Compleat which is REAL food (real chicken stock, cranberries, etc) in a drinkable formula and we are going to take an hour to feed him 125 ml 6-7 times a day.

We are also upping his reflux meds for now and adding in some probiotics.

Hopefully these steps will keep him from vomiting so much.

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02 March 2010

No new helper...yet.

We still don't have an aid. I'm not complaining though.

My case worker came for a visit last week and when she heard about the first lady who came, well, she was ticked. She had told the agency that had sent Ms E. what I needed and couldn't believe they sent someone who didn't fit the bill at all. I told her they were trying to find someone else for me and she said that wasn't going to happen. She called them immediately after leaving my house and told them we didn't need their services.

I think I really like her.

We have another rep from a new agency coming to meet me and Liam tomorrow. He sounds like he knows what he is doing. By coming to meet us and get a feel for what I want and what Liam needs, he has a better chance of placing the right person sooner rather than later.

And I told him I was going to be picky. =)

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