24 September 2008

Sept. 24, 2008


I went to church for the first time in 10 months this weekend. WOW- I can sit and wonder where the time went but I know where it is! Liam was a trooper through our group study, fell asleep for the dedication and then we came on home. He doesn't remember a thing- he was conked out good. He cracks me up- he doesn't like to sleep for long. And wouldn't ya know he naps for the dedication.

Pastor Allen did our dedication (he does all of the babies) but he is special to us because he did the funeral services for both Kyle Ann and Brady. They presented Liam with his very first bible and it was so thoughtful of them to engrave it with both Liam and Brady's names on the cover. I thought that was very sweet of them to do that for us- for them to honor Brady and remember him in that way. It meant a lot for me to see that Brady isn't forgotten.

It wasn't too bad getting out for church. But it isn't something I want to try and time and coordinate every Sunday. I keep saying I'll get back to church when Liam gets his head up and controlled. So if prayers are sent for Liam, please pray that he would learn to coordinate his movements and muscles in order to get his head controlled. And pray that his visual impairment would get better each day allowing him to see and play with his toys! those are his difficulties right now. Liam is now 6 months old corrected (the age he would be if he had been born on time) and 10 months actual. Born 4 months too soon....

16 September 2008

Sept 16

So, I thought something about Liam was different. On Saturday, when I was doing PT stuff with Liam he just seemed different and I couldn't figure out what it was. And after doing therapy off and on throughout the day I realized what was different...He was lifting his head higher all by himself, he was lifting his head smoother and more controlled and he wasn't pushing against me when I would help him! That means he is improving and it's getting easier for him!

Liam is also starting to get to midline (center of his body) better and bring both his hands to his mouth.
I know for all the people who don't know anything about micropreemies this might not make sense so I will give a brief explanation- Some preemies can have quite a bit of trouble coordinating. What comes so naturally to a baby who spent all of it's proper time in the womb can be difficult for a micro who layed on a bed being poked and prodded instead of floating in a warm world. Micros have to breath and eat way before they are supposed to. They feel touch (mostly negative) when they shouldn't. Future development depends on a lot of factors such as bleeds in the brain, lungs, vision, hearing, etc. They can have sensory issues, feeding issues, muscle tone problems. etc. We are literally teaching Liam how to play, explore, and see. The brain has an amazing ability to adapt and to overcome. It can rewire itself and remap to allow deficits that have occured to be conquered. It can take time for some micros and no time at all for others. Every micro is unique and their journey can be full of trials and troubles that vary from minor to severe.

So- Liam getting to midline is good news. He is learning that he has hands, that they are for play and he is learning to use them. I vary his positions allowing him opportunities to get his hands to his face. On his back isn't good cuz his hands are too far away. So we try sidelying and tummy a lot. You all remember- babies naturally put everything in their mouths to explore it. Liam doesn't yet. He gets a bit nervous since he can't see it that well and he hasn't been coordinated enough to get things where they belong. But his skills are starting to emerge! He's getting better, he's improving and that means things are going in the right direction. He's doing it!

I tell ya- I knew something was different on Saturday!

12 September 2008

Laughter

It might be hard to hear over the silly squeaking chicky- but Liam is actually all out laughing. You know- the hearty laugh! It was the first time ever and Rylie got it on camera. We were getting goofy at Ian's baseball practice and for whatever reason- Liam thot it was hilarious... take a look and give him a second to get going.
video

11 September 2008

Sept 11-

Rylie is 13!!!



Having a blast with his bath-


I had an appnt with the new ped today and I liked him. I liked our old one too but I think this Dr will be good for us. He seems like he will help me and be on top of things. He wants Liam back in a month for a weight check. And I couldn't believe it, but Liam gained 1 1/2 lbs and 1 1/2 inches since we upped his calories just in the last 4 weeks! So that's great news and a good little spurt! He is now at 25% for his height and still a paltry 5% for weight but at least he's growing!

Therapy was good today. Cathy thinks Liam made good progress this week. I love it when the therapist is happy. And I loved having her here twice this week. I think that will really help Liam along. We are working on a few things but mostly head control (he'll get it when he gets it) and something called graded flexion (bringing his body, head, hands, etc to midline). He has improved on that just in this week alone! Liam wants to mouth his toys but doesn't get how to do it yet. Plus he can't "see" them and not being able to control his movements well makes him a bit gaurded with his mouth.

I got a wonderful email from a sweet woman in MD whose micro preemie has delayed vision. She said her boy didn't really start seeing until he was 1 1/2 yrs old! I am thankful that she reached out to me because quite frankly it can be lonely in my world. And hearing about the obstacles that are overcome is a reminder to me that they CAN be overcome. With God ALL things are possible.

Thank you for your continued prayers and support of me and my family. Thank you for still reading our blog. The Lord seems so near when I have you all by my side!

08 September 2008

Sept 8, 2008

UGH- I just spent the last half hour reading blogs about kids with CDH. I should've known better. I have been bawling every since. The depth of pain involved when you lose a child is just unimaginable and I grieve all over again when I see others who have lost their precious children. After we buried Kyle Ann I had come home and looked up stillbirth on the internet and that was another huge mistake for me. I found a website that someone had started in order to honor the children we have lost. You could post your pictures of your babies. It was page after page of dead children. In a society of media flowing around every corner you can make a video montage complete with tear jerking music and images of pain. Not that the babies are in pain- but it is painful to see a life cut so short. It's painful to see the life and the color drained away leaving nothing but the memories of the life you had envisioned. I need to go to bed. I don't know why I am still up! I just wanna go cuddle my boy.

Liam has Pt at 8:00 AM! It is now midnight and if all goes as it usually has- he will be awake by 3:30. My little man has ALWAYS slept through the night but for the past week he has woken up at 3:30 on the dot and has fitful sleep until he gets up at around 7. So that makes me a VERY tired momma. See- I try to get one or two more ounces in late at night when he is sleeping. So I don't get to bed until 11 or 12. It has been roughly 9 months of sleep averaging only 6 hours a night. My body is meant for at least 8!

06 September 2008

9/6/08

YEA- Liam had his first VT appnt last week- As I said before, I was very excited to have Marsha here and help teach me about what to do for Liam. It was an awesome appnt. She brought out some shiny toys and he looked right at them!! He still isn't processing right but we are still praying that it will develop over time. He can see but his brain doesn't know how to interpret what it is seeing and we have to teach him how to do it. I am so thankful for Marsha and the help she will be able to provide.

We will also be visiting with Miss Kathy (PT) twice a week from now on. Dr B. (Liam's NICU Dr) wants the best for her babies and because Liam is one of her babies she wants the best for him that he can possible have. She's the one who I talked to for an hour and half on the phone! Anyway- She told me to get Liam into therapy at least twice a week. When I mentioned it to Kathy she didn't think CDSA would pay for the 2nd visit. So I called CDSA and left a message saying I wanted more therapy and how can I get it. My coordinator called back and said it was done! ;-) I wish everything could go so smoothly! So Liam starts PT twice a week and gets VT once a week. I am now going to push for OT at least every other week. I only see our occupational therapist once a month. Dr B thot that was ridiculous. So I talked to the coordinator about that as well and I am hoping that will get taken care of quickly.

I am going to check out a new pediatrician this week. I hope he is a good fit for me. I asked Kathy for a recomendation because altho I love our ped. I don't think she is very on top of things. Actually- I know she isn't. Liam had his 4 month check up (we are very behind as he is 6 months corrected) and I had to remind her that Liam needed a full newborn screening panel done. Because Liams last blood transfusion was a couple of weeks before we were discharged, he had to have the newborn blood tests redone. It takes 4 months for the body to regenerate all of its own blood. So- now that LIam has his own blood coursing through his veins he has to get the screenings done again that test for those rare diseases. She didn't even remember and when I reminded her she had to go check his chart to find out why he needed it! And she was the one who originally told me he needed it. I wouldn't have had any idea!!

She also didn't do a very good exam. She checked his hips and his soft spot. That was it! She didn't ask me anything about his development. What if I wasn't on top of things? She should be checking up on me and Liam to see if he is getting what he needs. Liam only weighed 12 lbs even. I was hoping and thinking it would be more closer to 13 lbs. Liam is in the 5th percentile for weight and height. So, according to his previous weight check he isn't gaining very well right now. She said we could up his calories to 30 per ounce. But- she didn't need to see him back for a weight check. WHAT??

On a good note- Liam seems to be outgrowing his reflux!!! AWESOME! It isn't fun to watch him puke so much and it is just as aweful to clean it up. Not a piece of furniture or carpet downstairs has been spared... LOL. I just realized last week that it had been several days since he had thrown up. So we have only had 2 vomits in 2 weeks! :-) He is eating better too. I'm not getting any more volume in him but the amount he is getting is now higher calories and it is staying down. Liam is almost 6 months corrected so I am wondering when it will be ok to try spoon feeding him. I don't think he is ready yet- but thats something the OT is supposed to help me with. We;ll see.

We have a busy week this week. Now that school is back in session (Rylie and Ian take classes onine) we have field trips, co-op, piano lessons, therapies, Dr visits etc... All in this week!!

01 September 2008

HAPPY BIRTHDAY RYLIE!!!

Oh my- I have a teenager! and I couldn't have ever picked for myself a more wonderful daughter. Rylie, you are such a joy and are precious to me. You have grown and changed so much in the last year, both physically and mentally. You have always been wise and loving, gentle and funny. My prayer for you, as you mature even more in the coming year, is that you will grow closer to the Lord and appreciate all the little things that make up our crazy world. We love you- I love you-thanks for keeping us laughing! ;-)