31 December 2008

Sorry for the delay!

We are all well. Christmas was wonderful spending it at home. The kids kept saying over and over again how last year sucked. I feel so bad for what they have been through and the feelings they have had to experience through all of this. They are so resilient yet I am sorry they have had to feel such pain so young. I wonder if we will ever again experience a Christmas that we don't sit and think of the Christmas of 2007. Time will surely dull our feelings but will never take away the ache. It will be nice to not ever again say, "Remember this time last year..."

Liam is doing FABULOUS on his solids. He is eating 3 jars a day and he loves that I don't have to shove the bottle in his mouth so often. He gets a lot more calories now than before but less of the formula due to the solids taking up his tummy space. He just can't handle a lot of food. It is what it is for him and we will have to make do. I will be excited to see his weight at this months check up. Liam is also finally up to 3 ounce bottles again! WOW! That has not happened since before he got constipated 3 months ago.

As Liam gets older we can really see where not having much of a cerebellum is coming into play. He doesn't coordinate well at all with his arms. He reaches for toys but flails his arms when he tries. When he is on his back he is very uncoordinated. He tries to move but he just isn't getting how to do it yet. But he LOVES his belly which is such a blessing because I hear most CP kids don't like tummy time. He is still doing well trying to lift his head and is slowly getting there. I have faith. I have too. He's has my heart and soul wrapped up in his smile.

Liam loves his songs. He knows all of them and anticipates the moves. He still doesn't babble or coo but he does experiment with his voice once in a while. I'm working hard on getting him to say mama. He just thinks it's funny and grins really big when I say it. He is also enjoying playing peek-a-boo with me. I hide my face and he smiles when I return.

I have a funny story- I always see those stupid Bumbo seats in Target and get so irritated that my little guy can't use them like the rest of the normal babies. It's silly really, but it drives me nuts to see that silly happy kid on the box... Anyway, I decided that I was going to buy one anyway. I took it home and put Liam in it and he tried sooooo hard to sit up in it. He really wanted to do it. I showed Cathy and she was impressed that he tried so hard. I'm praying everyday that he will get the strength and coordination.

Rylie loved getting an Ipod for Christmas. She was shocked. She still is. Ian got the cool gifts he wanted and Aidan finally got her Julie American Girl doll. She has wanted one forever and she just wasn't ready for a $120 doll. I still don't think she is but I can't hold out on her forever. The box does say ages 7 and up...

I'm spending New Year's with Limmy while the rest of my family is in SC. It's been quite fun to have the house and be able to read in the evenings.

I started a simple, new medication to combat my adult acne (birth control pills) and three days into it I developed terrible itching, swelling, redness and bumps. I couldn't figure out for a while what it was and then it hit me. I have used BCP before (decades ago) and never had a problem so I didn't automatically associate it but it was the only thing I could think of. When I checked with the pharmacist she said I was allergic to something in it and discontinue. The next day I felt tremendously better! I was still itchy but it was much less in intensity. I am now about 4 days out from the pills and altho I still have sores and irritation I am feeling so much better.

This area of my neck is what my entire spinal column looked like.

This is my leg. The sores were so swollen on my scalp that I couldn't tilt my head backward.

I have a couple of posts I have been debating on writing that I hope to get to soon. My blog was originally for me and my journaling purposes only and I had no idea that it would ever be read by people all over the world. Although the blog is still for me it is now not only for me. As I share my thoughts and feelings with you, I pray there will be no passing of judgement, jumping to conclusions or disrespect shown. These are, after all, my words, my thoughts, and my life. It is what it is. I am God's child and I am still growing.

16 December 2008


It's been a while since I have updated. I kind of needed to collect my thoughts regarding my last therapy session in VA. It went ok. Nothing new or exciting for Liam in his development, I don't think. But talking with Carla had me a bit confused about Liams form/s of CP. And due to that I was having a hard time recognizing what she was saying to me. And after talking with my therapists here, who know Liam extensively, I have been renewed in my thoughts. So- now I have two therapists (more than that really) who are on a little bit different paths and ideas and thoughts about what LIam is doing in his movements. But- either way, it doesn't change what we will continue to do with him in his therapy. There are going to be some differences that I can not reconcile and so we will deal with them as best we can. If Liam benefits, that is all that matters. I did decide that one of the things Carla didn't want me doing with Liam wasn't what he needed. When I quit doing it, he quit doing it, and he spent a month not even trying. Now that I went back to it he is practicing it again.

On to good news- Liam didn't gain any weight this last month and the good news is that he didn't lose (see, there is always a bright side!). Because Liam isn't wanting his bottle very much and becauae I am losing my sanity on some days, we decided to go ahead and get him eating more solids. The concern has always been to go slow so Liam wouldn't become orally defensive and shut down or that he wasn't physically ready because he didn't have head control and wouldn't be able to move his tongue properly (he has a horrible latch on the bottle and it's very weak). But out little man has proven that he is ready and willing. He is now eating three jars of food a day and with that has upped his calories by 100-150 per day. So, as long as he continues to do so good, we should see a lovely weight gain this next month.

Liam got sick again with a cold in VA and he is still trying to get over it. I don't know if it's the stale hotel air or what but we are now two for two on him getting sick in VA. We aren't scheduled to go back until the end of January.

Rebecca-It was great to visit with you and thanks for the lunch. I had such a great time!

Tracie- Thank you for your generosity-we have been greatly blessed by your gift!

I will post a few new pictures soon-

07 December 2008


Therapy is going... we have had 4 sessions so far and have 4 more to go and we will be home late tomorrow. I am bummed tho. I haven't heard any details about CP for Liam other than that he has it because of his brain injury. Carla said yesterday that she doesn't see many kids with Liam's issues of constant movement and that it isn't as common of a problem. So now I'm wondering why no one has mentioned to me about his movements before now. I knew he had jerky movements but didn't know that his constant moving isn't a common thing in CP. Ugh. But the positive is that he calms his movements down when in certain positions. It's when he is on his back that he gets frenetic.

01 December 2008


Liam's first birthday!
You can tell he wants to blow out the candle.

Enjoying his first taste of Cool Whip.

His first Piano!

We had to go to Duke today for Liam's eye exam. I always despise going because we are literally gone for 10 hours! It's a 2 1/2 hour drive there and we spend at least 2 1/2 hours at the Dr. Today was no exception but at least they weren't running too far behind. The last time we were there we spent close to 4 hours at the Dr and most of it was waiting time!

The great news is Liam's retinas and optic nerves still look wonderful! YEA! And the weird, good news...the fact that Liam's right eye is turning in is a good thing (I know, strange, huh?). Dr Freedman said that it means his eyes and brain are trying to work together and children who are blind don't have eyes turning in and going cross eyed. We know Liam isn't blind- his vision has improved over the last several months and he clearly sees certain things. Dr. Freedman reiterated what we have heard numerous times and that is that when the body and muscles start working properly and coordination and function comes along the brain and eyes will follow. So- we continue to work with Liam and help him to grow and develop. She did say he is slightly near sighted and when he is "seeing" better she will fit him for glasses.

Please pray that his development will continue in a positive manner allowing Liam's brain to communicate properly with his eyes so he can "see". Part of his head control issue is motivation. Because things aren't interesting to him yet- he doesn't care to look up. He can do it (he looks up at his light box wonderfully) and hold his head up for a time but with proper motivation he will/can get better.

And I have to brag on my little man and praise his Pt's, Cathy and Carla. Liam tried 3 times this week to roll from his back to his belly (he almost had it). That is huge! Why? because he has never lifted his legs and hiney off the floor while on his back before this past week! So he finally gets them off the floor all by hisslef and he tried to roll over.

Liam is also purposefully rolling onto his tummy (with help or from his side)and trying to get his arms out from under him when he does. This is huge because before two weeks ago he would just let them lay there.

Liam transfered a toy twice from his right hand to his left. I don't know how he did it because I didn't see it!! I put the toy in his right hand and twice when I went back to check on him it was in his left. Awesome!

Liam is manipulating his fingers more and trying to get them individually in his mouth.

Liam is looser with his legs and moving them more fluidly than ever before. When he is on his tummy he will now pull his legs all the way up underneath him and squirm around.

All these positive steps may seem small but for Liam they are huge and they all have come together for him within the last two weeks! I think the ABM therapy in VA showed Liam a lot about his body and what he CAN do with it. These changes all happened within the last two weeks after his ABM therapy!

We are off to VA again on Thursday and will be gone for 4 days this time allowing Liam to get in 8 sessions. Liam had 6 on our first trip so I am praying for more subtle but amazing changes in the weeks to come!

Because my blog isn't ALL about Liam... lol...

Shawn and I noticed warped boards in our kitchen and we have a few from the previous owner anyway so I didn't think much of them. But Shawn thought they were new and then I realized they were too. I chalked it up to the problem we had with the dishwasher when both of us were out of town. Then the next day we noticed they were worse. Still thinking that it was from the previous problem with the dishwasher since the floor boards are dry, I dismissed it again. I finally realized we had a big problem when our bathroom (that is behind our dining room) and has brand new flooring in it was buckling. I freaked. This meant the water had spread across the kitchen, the dining room and into the bathroom through the subfloor and kept the top of the floor dry allowing the damage to go unnoticed! Why me??? My dad and I laid the bathroom floor ourselves....It needs to be fixed and now the dining room floor which runs through the office either needs to be replaced or if possible, sanded down and resealed.

On a bright note- the water damage was caused by a minor problem... a leak from the valve under the sink and a leak from the drain under the house. The plumber should come toorrow to fix it. I hope the bill is minor too. ;-)