31 October 2008

Halloween

Wow- It's been a while since I have posted but we have certainly been busy! Rylie's best friend , Sabrina, flew in from CA for a week long visit (we lived there for 6 1/2 years). We all had such a great time hanging out with her. We took Rylie and Sabrina to Busch Gardens in Virginia (only a 3 hour trip) for a late b-day present for Rylie. It was just Shawn and I and the two girls for the day. I left Liam at home with my mom and it was the first time I have been gone from him since I brought him home from the hospital! He survived ok- I think he really didn't miss me much (he doesn't know what he's got yet!) and I did ok too. I called home quite a bit but I knew he was in great hands.



The week Sabrina was here went by so darn fast. I can't believe she went back home already. Luckily she flew right into New Bern so it only took me 5 minutes to get to the airport. One of these days Rylie will need to get brave and fly alone to visit her like she does us. But we already have our next trip planned out and if it all works out we will be going to Disney World and meeting up with her there and bringing her back here. So Rylie is off the hook again. I know she's breathing a big sigh of relief on that one.







Liam had his follow up evaluation at the NICU for a six month check up. We are behind by a month (he is 7 months corrected age now) and it was fun to see the Dr but really pointless for us. Nothing was said that I didn't already know and that we aren't already working with Liam on. To go by his age corrected he should be doing a whole lot more than he is. But it's important to remember that he has improved a lot over this past month and we can only pray and work with him in the hopes that he will continue to improve!



I am so excited eith Liam's improvements this month. Liam's CVI (vision impairment) means he is supposed to see better out of his side vision and not directly in front for now. But with his laser eye surgery they had to sacrifice some aspects of his side vision in order to save his retinas. Our vision therapist has so much wonderful information that you would never think of if you didn't have an impaired child. One of those things is when you approach Liam that you don't talk to him. Give him the chance to see you first. Well, I keep trying to bob back and forth over Liam to get him to see me and he just wasn't locking on to me. So one time, I got over him in his bed and I was very quiet and I moved my mouth up and down in a way that I normally do when I make this sound that Liam loves to grin at. But I didn't make the sound- just moved my mouth... and he grinned!! He saw me! We are so excited because that is huge progress! Liam seems to be "seeing" me better as well. And get this- when we were at the book store I held up this toddler book with chickies on it and he grinned! And then he proceeded to grin through the whole book! Obviously we have no idea what his acuity is but as long as his eyes stay in good functioning shape we have no reason not to conclude that his vision will continue to get better and better!

Liam's head control is getting better too. He's had it rough trying to get control of his head and it has been a battle and still continues to be but he has made huge improvements this month. He is getting it all the way up on his own when he is on his tummy and he is able to hold it there for longer than before! I also carry him in a certain way now that allows him to "stack" his head (that's what Pt calls it) so when he is on my chest facing out he can keep his own head up. I don't have to help him. And that's a huge improvement because he used to just fall forward all the time.




We also finally introduced real food to Liam this month. Which ended up causing problems and a setback. Vision therapy is excited for Liam to start foods but physical therapy wants to make sure he is fully ready. But the people who are really able to look at Liam and say for sure is an occupational therapist and we haven't really had one of those. Remember when I said we had finally gotten one and I was excited about it because Liam is ready for one? Well we still haven't seen one yet. We were able to get one from outside the county who has her own practice and she will finally start for us this next Mon. She is supposed to help us with feeding and issue related to that. But I got tired of waiting so I introduced carrots to Liam last week. Our vision therapist said to put his hand in the food and then bring his hand to his mouth so he can tastes them that way. So I did and he did great! So the next night (when we were in VA) my mom was supposed to do the same thing but she decide to try with a spoon instead. And Liam loved it. So the next night I did the same thing but with a spoon. Liam was doing really well eating from the spoon. We were just giving him little bit at a time so it took 3 days for him to finish the one jar of carrots. But I thought that was great progress and was so proud of him! Yet when I told our PT she got nervous. She was afraid that I might not know what to look for with an oral aversion and she didn't want us to set Liam back any with his progress (he's been orally defensive before). So I thought I would just hold off until OT came (thinking she was coming that week). Well, it didn't matter because by the time the weekend rolled around Liam was constipated, refluxing like crazy and in pain. I was so frustrated. We had his reflux under control and now he was in bad shape with it. Not much was staying down and he clearly could not get out the poo. I had to help him get some out (not fun for either of us) and he was still refluxing and constipated. We went to the er for an xray to make sure it wasn't too big to pass and they said it wasn't and to just give him some time. We did a few enema's and some suppositories and he finally worked all the hard stuff out. But he is still refluxing a couple of times a day now. And we have not been able to get back up to his normal feeding schedule. I hate being a food nazi but he doesn't eat that much to begin with! So, needless to say, we haven't done anymore carrots and when we do go back to solids we are going to have to be very careful. I did start Liam on prune juice (less than an ounce a day) and that seems to be keeping him very regular. I don't think he has lost any weight but I'm sure he hasn't gained much either. Well- we are off for trick or treating! Happy Halloween. It's almost Samhain (thats Gaelic for November!).

21 October 2008

Oct. 21 Saving the life of special needs...

A post has come about on the micropreemie board about whether or not to save the life of a baby with a grade iv bleed in the brain. It is the worst bleed that can occur. Although this is a very personal issue and one I did not have to face- I can say I would definitely have fought to save my childs life. Some would choose to end support. A doctor will give the worst case scenario and tell you what can happen. But that is all they can do. They can not predict for sure what will happen. The medical field is not an exact science. There are always exceptions to the rule and no one can ever tell you for sure what will happen.

The heart of this issue comes down to the parents ability to deal with a child with special needs. And beyond that it boils down to whether a child is worthy of living it's life with disabilities. How can a parent decide such a thing? What disabilities are easy to live with and what are not? How about children who are born perfect but develop disabilities later in life (bipolar disorder, depression, mental illness, autism)??? Should these children, if we had known, even been given a shot at life since they would face such devestating disabilities? It's a preposterous claim- yet it is a valid question in order to see how disabilities affect our perceptions. One can not answer who will grow up and become disabled. What test is administered to determine what disability is easy to live with and what is not? Is it quality of life that will decide a childs fate? And what quality is so negative to determine that support should be ended?

Again- ending life support is personal and gut wrenching and based on individual cases, but if a baby has the will to survive and the ability to fight, why not give it a chance to live? If special needs is the determination of whether a life is worthy of living then there are an aweful lot of people on this earth who don't belong.

12 October 2008

10/12/08 again-

Liam is doing pretty well. He has progressed in the last week to go so far as to lift his head all by himself while on his tummy in order to look up at his book. He lifts it higher, steadier and stronger than ever before. What is really exciting is his interest in his book because that means he is grasping the vision concept. He is realizing he can see and he loves to have me read his book to him. It's adorable to see him smile and squeal at his book. He also knows his vision card on the fridge and grins at it too. He still needs a lot more work on his head control but it is important that he has gotten such good strength lately on his tummy. He still is very uncoordinated with his hands. That seems like it is going to be an issue.

Liam is supposed to go back to the NICU for a follow up clinic at 6, 12 and 18 months for evaluations. The Dr's like to follow these little guys and see how they are doing and try to catch anything that me or my therapists here might miss. I don't want to go because I know Liam is behind and I know they aren't going to tell me anything at this eval that I don't already know. But, our fave NICU Dr wants to see him and really wants us to go so I am going... We are scheduled to go on the 27th of this month. I got my papers to fill out this week about Liam's current health and condition of development. It was quite depressing to fill it out. I couldn't mark off a yes for a single thing in the category of gross motor and fine motor. Granted they were asking questions that involved vision (does your baby look at itself in the mirror or lift his feet to look at them) but still- it wasn't fun doing the paperwork. I just have to remind myself that Liam will grow and develop and become exactly who he is supposed to be in God's perfect timing. We can't push him (not too hard at least) and he will get there when he gets there. This evaluation also involves another hearing test. One that is supposed to take over a half an hour! Liam has wonderful hearing. They had never seen a baby pass an infant hearing test so quickly when we were in the convalescent nursery. I suppose he could have some loss at different decibles, but I think it's highly unlikely. He alerts very well to sounds and with his lack of whole vision he gets "scared" when he hears sounds coming towards him and he isn't looking in that direction.

Liam is now 14 lbs. Woo Hoo! Even though I can't get more than 17/18 ounces in in a single day, because we have it mixed to such a high calorie of 30kcal per ounce he is gaining well. His growth curve looks really good! So- as long as his curve keeps growing I don't have anything to worry about with his lower volumes. Liam's refluxing is occuring again but it doesn't seem to bother him and with me feeding him small amounts frequently it keeps him from vomiting.

Aidan accidentally jumped feet first onto my back this week while I was on the floor playing with Liam. I think labor pains were easier than what that felt like! I have been using TENS, heating pads and medicinal pads to try and make it feel better. I am praying it was just a muscle that got hurt and nothing more serious. It's difficult for me to pick up Liam and to play with him in certain postions on the floor right now.

And finally- we got approval for Liam to get occupational therapy once a week. I am really excited about this because it means Liam has progressed enough to need it and it means we can work on getting him ready for solid foods. I really feel he is orally defensive. Not a whole lot of defensiveness but enough that it keeps him sticking his toungue out to check out what is coming next before it hits his mouth. I have tried using a spoon with nothing on it and putting it in his mouth to see how he does and he doesn't gag. But adding food and getting him to work it around in his mouth to swallow is a whole different story. Ideally, his vision therapist would like him to play with it first, get it on his fingers and get his fingers into his mouth- but with Liams uncoordination with his hands I can't see that happening anytime soon. And I hear the OT is kinda tough (not in a bad way) so I think it will be a great fit for us. We will now be up to 4 therapy sessions a week. How I wish we didn't need them- but how grateful I am that we get them!

10/12/08

You'd really quit reading about Liam's journey because of a difference of view? Wow.

It's funny how someone can enjoy reading my blog but the moment something is written that they don't agree with, they decide it isn't worthy of their time. I'm genuinely curious-Do you only engage in relationships with people who are exactly like you? It's an honest question.

How unfortunate that a persons political view would cause you to disregard their life, their struggles and their value as a human being simply because you disagree with a veiwpoint. How dreadful it would be if everyone quit reading preemie blogs because they disagreed with one posting. How much value and insight will you lose from being so close minded?

And what is truly disappointing is your lack of tolerance.

11 October 2008

Follow up to political-

Listen- I don't care what the color of someones skin is, their sex, or their political affiliation. I want a president with good moral character, principles and experience.
From my post below- I obviously believe Obama has serious character flaws.

To follow up with anonymous comments in my previous post:

I haven't seen McCain saying ANYTHING about Obamas skin color. In fact, McCain has defended Obama as a good man in recent days. People in his town hall debates have booed him over his defense of Obama. What does that say of McCains character? McCain doesn't want to attack Obama personally. that sounds like good morals to me.

About the position of VP and Biden getting it wrong-

Biden said: And the primary role of the vice president of the United States of America is to support the president of the United States of America, give that president his or her best judgment when sought, and as vice president, to preside over the Senate, only in a time when in fact there's a tie vote. The Constitution is explicit.

The only authority the vice president has from the legislative standpoint is the vote, only when there is a tie vote. He has no authority relative to the Congress. The idea he's part of the Legislative Branch is a bizarre notion invented by Cheney to aggrandize the power of a unitary executive, and look where it has gotten us. It has been very dangerous
.

The notion that the VP can preside over the Senate only when there is a tie vote is simply wrong. Nor is it true that the only legislative involvement the vice president has is to break tie votes. The vice president is the president of the Senate, where he interprets the rules and can only be overridden by a vote of 60 senators.


Palin said correctly stating that the vice president holds positions in both the executive and legislative branches, she also noted that:

Of course, we know what a vice president does. And that's not only to preside over the Senate and [I] will take that position very seriously also. I'm thankful the Constitution would allow a bit more authority given to the vice president if that vice president so chooses to exert it in working with the Senate and making sure that we are supportive of the president's policies and making sure too that our president understands what our strengths are.

My point in my previous post is that if the media had heard Palin say the postion wrong we would have heard all about it. Try and find something about how Biden got it wrong. You can't. Cuz they won't report negatively about democrats. That is a fact. And it is a shame for our country to have media that don't report accurately. A lot of people never hear the truth.

And as to the bit about Palin making rape victims pay for their kits. The police chief didn't want the town to have to pay for the costs because it would burden the city. He wanted to keep charging the women. And Wasilla is not the only town where that happens in America. Check out CNN's article on it.

Ok- Back to mommy mode....Liam is fussy.

10 October 2008

Warning- this is going to be political-

I decided a while back that I wanted to be an independent. I am definitely not a democrat (less gov't is for me) and though I side a lot with the republicans I don't necessarily agree with all of their leanings either. To be sure-the political realm has most Americans tired this year and some are downright angry. I am tired of too many things to list them all on here. But we have some problems in this election that I wanted to touch on. The democrats turn a blind eye to these issues because Obama is a democrat. And we all know the media is oozing left wing agenda out their noses. You can't get a fair and balanced report on the major news networks anymore.

WHAT?
The attacks on Palin are childish. Did you watch the debate she had with Biden? The man couldn't even tell you what the real job of the vice president is and he is running for that position! Palin got it right and Biden got it wrong. Had that been reversed the media would have jumped on it and ran with it. One, because she is a woman and two, because she is a republican. But did you see anything in the news about how Biden got his potential future job duties wrong? I didn't hear a thing.

If McCain had attended a church for 20 years that told him America deserved what it got on 9-11 and the numerous other outlandish vitriol out of Wrights mouth over all those years, would the media let it go? Would Obama's camp let that go? Of course not, because it is ridiculous to think that you could have a mentor with those opinions and values and not let it influence you. WHY would you want a mentor/pastor with those opinions if you didn't have some of your own leanings that way? McCain would never have heard the end of it.

If Cindy McCain had said that she was "PROUD OF AMERICA FOR THE FIRST TIME" do you think people would let that go? Come on Michelle Obama- your country paid for your husband to eat while he was growing up. Obama's momma couldn't afford to put food on the table. They received gov't assistance. Didn't it make her proud to know that her country helped her husband from becoming malnourished or even from starvation? What about how our country elected that man to a political office? Or how about how her countrymen and women has fought and died so we can all be free? But her only proud moment was when Obama was chosen for the democratic party to run for president? Give me a break!

What if McCain had a relationship with a known terrorist? Do you think the left wouldn't pounce on that and stick with it? Michelle Obama and William Ayers wives worked together! Obama and Ayers were on a committee together (a committee at one point existing of only 6 people). He knew that man in more than just a passing relationship yet the media isn't reporting the extent of it. They don't want to alert people to Obama's past dealings that are less than stellar.

And what about ACORN? Obama was their lawyer at one point in his career. This group admits it is left leaning although it is supposed to be non-partisan and it is registering fraudulent voters all over this country who will vote for Obama! They are paying people to register more than once!

What does all of this say about the character of Obama? At best it says he doesn't have the maturity it takes to know hatred and bigotry, political idealism, elitism and left wing nutjobs when he sees it. At worst it says he is not ready to lead our country in the directino we need to go. If you think this country is divided- wait until Obama is in office.

07 October 2008

10/7/08

Liam got his first RSV shot of the season today. He didn't like it. He did awesome with his other vax but this one made him realllly cry. And with the RSV shot, we have to wait 15 minutes to see if he reacts before we can leave. Isn't that weird? They can inject him with 5 vax at once and we can leave right away but with this one we have to stay for a possible reaction. I just find that odd. He has to get this shot every month until RSV season is over which won't occur until April! It costs over $1000 per shot. And lucky for us our insurance will pick up the cost due to his micropreemie status.

Last night we had a ballgame for Ian. I hear Aidan yelling and when I get over to her she is arguing with a boy at the top of her lungs about whether or not he spit on her. Aidan yells, "You spit on me!" Boy yells, "No, I didn't! I was pretending and you spit on me!" Aidan yells, "Cuz you spit on me!". This goes back and forth until he looks at me and tells me the same thing- that Aidan spit on him aafter he was just pretending to spit on her. I calmed them down and then left. As I walked away I laughed thinking that my poor little Aidan is a really tough cookie who will defend herself at all costs. You can tell she has an older brother. Aidan is definitely the chief and not an indian...

02 October 2008

Oct 2, 2008

Umm- not sure...

This picture cracks me up- Liam loves to be thrown in the air. video This book was bought for Liam by Ashley- who was thinking of us when she saw it in the book store and I LOVE this book! Thank you, Ashley-it was the best gift! Liam will attend to this book. He watches each page and when I get to the last page his eyes get excited and you can tell he loves it. And did you see in the video? He TRACKED IT!!!!!! He is also starting to like the first page with the big piggie. He gets excited and "talks" to it. He will smile at it and he reaches out his hands to touch it.