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

Sorry

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

Therapies

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

Eyes

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. ;-)

26 November 2008

Wow-

One year ago today my life changed in a dramatic way. One year ago today I was taking a bath about mid morning. When I got out I noticed a little blood (hardly anything, really). After losing Kyle Ann 9 months before, I didn't want to take any chances so I went in to the Dr and had him check me out. He said I looked good and the boys sounded great. I wanted to know what the slightly pink blood was from and he agreed that I should have an ultrasound. I then drove myself to the hospital, stopping to get lunch on the way. I called all the family and told them I was fine, not to worry and I would call and check back with them later.

When I got to the hospital they checked me into a room, hooked me up to the monitors and were keeping a close eye on me. I had no contractions and we waited around for the Dr to get over to the hospital so he could check me again. Before checking me he sent me down for the u/s. The tech was very quiet and he said the boys looked good. I asked him how my cervix looked and he said it was funneling and baby A was laying in the funnel. I knew right then that this was bad news. But, I figured they would keep me in the hospital and all would be just fine. When I got back to my room the Dr checked me again and this time my cervix had changed. When he saw the u/s results they decided to transfer me to a level 3 NICU hospital for fear that the boys would be born soon. I didn't believe them. They started iv's in me, gave me steroids and prepped me for a flight to Pitt hospital that is over an hour drive by car. I was more scared of the flight than I was of the boys being born!

By the time the helicopter got to me the weather had turned off bad and they couldn't fly me out. I had to take an ambulance (S-L-O-W!) and they wouldn't even turn on the lights because I wasn't that "kind of patient"!

When I got to Pitt, I was set up right away in a room and monitored again where by now I had started to have a couple of contractions. The contractions had started in the ambulance and were few and far between but I knew it wasn't good to be having them especially since I was funneling and now starting to dilate. It took a LONG time to get a Dr in to see me and when they finally got in and checked me, my sweet little Liam was thighs down and out into the birth canal. Because Liam was laying on my cervix, his amniotic sac was slipping right into the birth canal. The look on the Dr's face when he felt how far out Liam had come was one of pure fright. They called in the high risk Dr on call and he advised me that I should have a c-section. He left the decision up to me but said that Liam was so far down in the birth canal that if he broke the bag of waters he would be in a lot of distress and he would rather deliver 23 week twins in a controlled environment than in a stressful one. And it would be more stressful on Liam to be born breech.

I decided to go through with the c-section after he assured me there was nothing they could do to keep my boys in very much longer. Shortly after midnight in the very early morning hours of Nov. 27, Liam and Brady came into this world. Liam was baby A and he had wonderful apgar scores of 7 at 1 and 5 minutes. And he cried when he was born. Brady had apgars of 2 at 1 and 5 minutes. He remained silent. Brady survived for one day and succumbed to his premature, undeveloped lungs. I did not get the steroids early enough for them to have been any benefit to my sons. It's amazing that Liam did as well as he did and had scores as high as he did for a 23 week baby. The NICU staff was amazed at how well Liam did when he was first born because he presented more like a 25-26 week baby.

It has been a year that I would have never chosen for myself or my family. I believe that the Lord knows best, though. and that He has chosen this path for us to follow for a reason. I know that Liam brings so much joy to us and every time he smiles it is a miracle. Liam should not be here. He should not have survived being born at 23 weeks gestation. He should not have survived his infection he received in the hospital that was so life threatening they would have called us in to say goodbye had we not already been there with him. Liam's lungs made it through in great shape when he had a PDA that sent too much blood to them for almost 5 weeks.

Liam is a tough little boy with a smile that will melt your heart. He is a fighter. And he wouldn't be here on this earth if it wasn't all a part of God's plan.

We have high hopes and big dreams for what Liam will do. We believe that all things work for good for those who love the Lord and are called according to His purposes. And we believe that through God ALL THINGS ARE POSSIBLE! Each day- I only have to look at my son to know how true this verse is.

Happy Birthday Liam and Brady!

video

19 November 2008

Somewhat back to his old self-


My smiley guy is back but he is still battling snot. And a new thing occured yesterday- he refused two of his bottles. I had to feed him the two bottles with a syringe. I'm not sure what OT is going to think about that since we don't want him being averse to his milk, but I was a desperate woman. He hasn't consumed anywhere close to his "normal" 17 ounces of food in weeks and he needs every drop I can get down him. His reflux really seems to be doing quite good at the moment and I am wondering if the adverse reaction of lowering his hunger has now affected him. It would be nice if Liam had come delivered with a manual. He is outside my expertise in mothering!

17 November 2008

We're home-

Oh- what a weekend it turned out to be for us. Not because of the therapy but because Liam and I both got sick. I have horrible laryngytis and Liam was running a fever and coughing (which would help him gag and then vomit). Luckily he is on the mend now with no fever, just a pesky little cough. I on the other hand am still feeling yucky. I will chalk it up to not nearly enough sleep so I am quite a bit drained. And no one can hear me talking.

ok- onto what everyone wants to know...

I loved going to this therapy with Carla. I watched her do 6 sessions with Liam and I was thinking for a lot of the time that it didn't look like she was doing a whole heck of anything. But when you watch a little closer you realize she is constantly feeling his muscles as she moves his limbs and back. Because Liam has neuro injuries, his brain doesn't tell his muscles how to work like a healthy baby's does. He misfires his muscles and he still flails around like a newborn. What Carla did was feel Liam and move him, when he allowed her to, in order to show Liam that he can form new neural pathways to move his body properly all by himself. Does that make sense the way I wrote it?

She never forces Liam into any position or force his muscles in anyway. She does not want to inhibit the process Liam needs to learn to use his body. The fact that Liam doesn't keep his head up yet is not her concern. She wants to see Liam progress out of his newborn movements. Liam needs to gain awareness of his body in space and the feeling of moving his limbs in a natural way and this therapy can teach him how to do that. We need to see Liam get on his own learning curve just like a healthy baby does. I'm thrilled with this therapy because it just makes sense. Liam doesn't know his body isn't working right. He doesn't know he is supposed to be doing things in a different way. But he can learn how to acheive these proper movements when we give him the opportunity to form these new neural pathways. It's shown wonderful results in kids with CP so we are praying that Liam will respond and open his mind to free his movements.

The hard part for me is that Carla wants me to be very observant about how Liam does over the next couple of weeks. And I'm not very good at that. I am going to try but it can be tough when so much is going on in my daily life. I do believe that Liam moves his legs more freely than he did before our sessions. He movements feel smoother, less jerky. If you saw Liam laying on the floor, he jerks his arms and legs instead of moving them smoothly and he is constantly moving them. After this weekend, it feels to me that his legs are moving smoother. It will be interesting to get my PT's persepective tomorrow. I am hoping things can work congruently allowing the best of both worlds for Liam.

We are scheduled for more ABM therapy for Dec 5-7. Carla said she wants to see Liam get on his learning curve and then we can space out the appnts farther. Of course, if I'm not on board I wouldn't go, but I definitely feel it's the right thing to do to help Liam progress.

I'll leave ya with something cute Liam did before we left...

I was feeding him in the living room on our couch when Rylie pulled up my blog. She went to the older video of the kids playing with him and making him laugh. When the video got to the part where they said "how big is Liam?" he started laughing. It was so sweet because 1) He heard this coming from the tv which was far behind him 2) He recognized the words 3)He laughed at it several times. I kept telling Rylie to rewind it and she videotaped him laughing at an old video of himself laughing. It was sweet for me to see him recognize it. It's very hard when you don't get those visual clues to know if he understand yet what we are saying. But this was a clear response that he understood what was being said!

14 November 2008

We Made It!

We got to Virginia last night at a little after midnight. We left our home at 5:15 so the 5 hour trip ended up taking 7 hours due to a few stops to feed Liam, one bout of vomit and potty breaks for Aidan and Mimi! It's beautiful up here right now with all the leaves fallen. I didn't get lost, not even once! The hotel is only a couple of miles from Carla's house and I think I've gotten the hang of the area here.

Liam had two good therapy sessions today. I went to the first one skeptical and expecting to get nothing different out of it but by the end of it I was glad we had come. The therapy was fully hands on the entire session and not once did she force Liam into a postion that he didn't get into on his own. That's a HUGE difference from our regular therapy. Not that our regular therapy is wrong- it's just different.

Our evening session went really well and Liam had Carla getting him into cute positions with his hiney in the air like a big boy. When he was done- he was DONE. I don't know what has gotten into him lately but the last few days he has not been my happy, little boy. I think the reflux has damaged his throat, making it sore and contributing to his gag reflex. Liam is normally great for his PT but on Thursday he didn't want to work with Cathy at all. That was unusual. He hasn't been smiling as much lately either. After 3 days on his very low dose of Prevacid I called the Dr back and told them he needed to take a stronger dose. My Dr wasn't in and they asked if I could wait until the next day when he was back. I told her no. They needed to have the Dr that was in call me back because I wasn't going to wait any longer. They agreed to let me give him a full dose of 15 mg 1 time a day or split that dose and give it to him twice a day. I opted for the once a day because the medicine is supposed to be given on an empty stomach and since I have to feed Liam all the time during the day there is not a second opportunity to get it in him. And kids with sever reflux, like Liam, can still get double that dosage if this one still doesn't kick it.

Liam had his first full dose today and he only threw up twice! That's huge! I don't know if it is the meds or just a fluke but I am praying that this continues. I have broken down in tears of anger and frustration over the puking in the last few days. It's such a downer to work so hard to get him to eat and then have him send it flying right back out. And like I said, he is so uncomfortable with it. I know I would be if I threw up 4-5 times a day!

My dad called me with bad news earlier. Our oven went out (no lights, no beeps, no heat) and our dishwasher isn't getting any water into it. Why does this have to happen when I am in VA and Shawn is in MO??? I told my Dad that I really would love to get new appliances for the kitchen but that I wanted to be able to afford them first. So he is going to have to figure out whats wrong and get it fixed (he has always been the epitome of a Mr. Fixit and if he can't fix it, it is completely broke).

Thank you Allison and Rebecca for praying for us. And everyone else who is on this journey with us. I can't imagine doing this all with out you.

12 November 2008

We are taking the plunge!

I don't want to drown. Not in debt, not in doubts and not in fear. So we are stepping out with faith and taking the plunge and praying that our awesome God will keep us afloat.

I leave for Virginia tomorrow. I will be gone 4 days. Liam will get therapy there with Carla Reed, a woman who was a regular physical therapist for 18 or so years and now practices using the Anat Baniel method. We will get two sessions a day for 3-4 days. I am excited for many reasons. I am hoping it will be a therapy that Liam responds well to. I am hoping it will answer questions and doubts. And most of all I am hoping that through this experience we will be able to give all of the experiences to Liam that he needs to grow and prosper and become the best little person that he can be. God has an amazing plan for him and our family and for those who have come to know him. We are praying for great results from this trip and that it is time and money well spent.

I have not felt like we shouldn't go. I talked with everyone involved with Liam from his pediatrician to all of his therapists and everyone was for it. How much more affirmation do we need to know that we should go? So, we are off tomorrow on Liams first major trip. I am taking cleaning supplies so I can disinfect the hotel and I was very close to packing the carpet shampooer, LOL, because I am afraid of the germs. But I didn't think I would like what I found in the shampooer when I was done and I figured it would take about 4-5 shampooes to get hotel carpet clean. I will be bringing my own comforter and Liams bassinet along with about 15 outfits for Liam due to all the vomit. We are bringing his bouncy seat, basket of toys and a stroller. Hmmm...I hope I have room for my things.

09 November 2008

What to do?

My fellow micro preemie moms will know what Anat Baniel Method is, but for all my other faithful followers I will give a (very) brief explanation. It's a form of therapy. Was that short enough!? ;-)

Seriously- it is a method of therapy that has shown wonderful results on children with brain injuries. The method was talked about on my micro support group and I decided it would be worth checking into. I was hoping for someone in Raleigh but no such luck for me. The closest ones who practice this method of therapy are 5 hours away. There is one here in the beautiful mountains of NC but he is not as experienced with children. The DC area offers several and one who works with a lot of children. She actually was familiar with Liams rare brain injury and was/is the therapist for the VA march of Dimes spokesperson who has the same injury Liam has! And this little girl is doing wonderful!

Here's the catch...
I am not positive and need to check into it more fully but I am pretty sure insurance will pay ZERO. We have BCBS and although they are wonderful with PPO's they are not so good with things of this nature. ALL of Liam's therapy is denied coverage by BCBS because it is done in the home by non-PPO's. They DO pay if it is done in an "office" but I would be crossing state lines to go to her office and I don't think it is going to fly. If anyone knows anything about getting insurance to pay for neuro muscular re-education please let me know!!

The therapist charges $125 a session. Which really isn't terrible except that the therapy works better when you have short burst of a lot. So Liam would need 2 sessions a days for a minimum of 3-4 days. That adds up quick! Let alone that I have to drive to VA, stay in a hotel and pay for gas.

I've been praying about it and I feel like I should take Liam at least once just to see what happens. It's a LOT of money for an experiement (will he respond to treatment?) but I don't think I could live with myself if I didn't find out for sure. I told my girlfriend I should have the kids do a fund raiser and sell plants or something. LOL One trip for therapy will cost around $1000. We just don't have that sitting around here these days. Maybe I could sell a kidney?

Liam spent the weekend throwing up half of what went in. I don't know how he can give such big smiles after puking all over the place. They make cleaning up the vomit a bit easier anyway.

06 November 2008

11/6/08


Fall is my favorite season and it was something I greatly missed when we lived for so long in southern California. There's nothing like a fall day to set your mind on the holiday season to come, to get you in the spirit of Thanksgiving. The colors are beautiful and the air clean and crisp. Autumn is a season that delights all of your senses. This picture is from my front yard. The leaves are dropping quickly now and the season will soon be over. I wanted to capture a bit of the color before it's all gone.

05 November 2008

11/5/08

Check out the photos of Liams first Halloween. He was so cute! If you can't tell in the picture, he is a lion. Rylie was already gone for the evening so she didn't get in the family shot.

I have had a stressful week. I try not to let things get to me and I am usually pretty good at that but Liam's reflux has me so darn frustrated. I want to scream. I feel so bad for him. He has never had the reflux this bad and I can't understand why the constipation of a few weeks back could have contributed to such a big change in his refluxing but I don't see what else we can attribute it to. Yesterday was the maximum that I can take and so I am putting him back on meds. He was only on Zantac for a short time because it didn't do any good (visably anyway) and I decided to start feeding him small amounts and it worked. We took him off meds (he's been off for 4 months) and he has done really well with it. But once he got constipated it was like his sphincter opened up and stayed that way. Yesterday I changed his outfit 4 times. On the final throw up of the day he just vomited a little bit and this was surprising because it had been an hour since he had eaten. I picked him up, patted him on the back and then he proceeded to hurl more food out his mouth and then up his nose. Liam couldn't breath. He instantly started flailing. I had Ian run to get his bulb syringe and I wiped his face with a wipey. I then suctioned his nose to no avail. I started beating him on the back all while he is thrashing around on the floor trying to get some oxygen. I am debating on calling 911 and decide to blow down his nose. He still isn't breathing. Meanwhile Ian (the only one around) goes flying out the front door because he is scared to death his brother is dying and he doesn't want to witness it. I am still patting Liam on the back telling him to breath (like he understands me!) and I decide to call 911 even tho they are 5 minutes away and he will be blue and breathless when they get to us. When I start to walk out of the living room to go get the phone, Liam finally got in a little, tiny, whisper of air. He lays his head on my chest and I can hear the fluid he is trying to breath around. I just keep patting him on the back (I had no idea what else I could do) and he finally starts breathing quickly and deeply. I lost it. It's such a frightening feeling to watch someone try to drown! If Liam only knew that he could breath through his mouth we would have been fine but he doesn't understand that yet. It is truely an indescribable feeling to think you are watching your baby die. And the time that passes while you are in the midst of it seems to be an eternity. I know it wasn't too long because Liam didn't turn blue, just a pastey white. But still, it was way too long for him to not get any air. I don't want to experience that feeling ever again. I am praying that meds will help calm him back down and help him with the gagging.

I also think Liam has gotten even slower in his digestion since the constipation. He just threw up again (while sound asleep for the night) and I fed him almost 2 hours ago. And when I fed him he only ate 2 whopping ounces of formula. So it isn't like I gave him this huge feeding and his tummy was full. His stomach should have been close to empty after eating such a small amount. I'll see what Dr. C says about it and we will go from there. But I am definitely getting him some sort of meds.

Liam's First Halloween!


02 November 2008

Funny Rash-



Does this look like a sensitivity rash? I think Liam has sensitive skin but this rash popped up late this afternoon and I'm not sure what caused this one.

The only time I've seen this rash on him before was when I used a brand new bib without washing it and I wiped his face clean after feeding him. I attributed that rash to the bib (with all those commercials chemicals on it) other than pointing the blame at the second day of introducing carrots.

Watcha think??

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.

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! ;-)

23 August 2008

Aug 23

So I got good news from the endoscopy- no damage to my throat. It feels damaged- so I was surprised with that. He said there is no magic pill to take away my symptoms so I don't need to bop around changing Drs. Excuse me? Don't they make reflux meds so people will feel better??? Have someone sit on your chest and try to breath. I feel like that daily. I also hate burping all the time like I've just guzzled a soda. Or, how about getting clogged vocal chords every day that keep you clearing your throat all the time..... I sound frustrated, huh? ;-)

New video of Liam laughing. It's just so sweet to watch his face light up!


video




Irish eyes are smiling:

Smiles are contagious:

19 August 2008

Aug 19

Still no word from VT. I'm bummed. I was hoping we would have started by this week. Liams NICU Dr. called today to check on him. We spent an hour and a half on the phone! How many Dr.'s do you know that would do that? She is a pretty special woman. Of course she asked all kinds of questions about Liam's development. Yes- he's behind.... But- we have faith that he will get there and that the Lord will give Liam everything he needs at the right times.

I would love for Liam to get his head up and keep it up. I am, unfortunately, getting tired of people thinking he is so small. He seems young because of his head control. And I now get irritated when people ask his age. I know- it's my own fault. They have no idea. I used to love telling people how old he was and seeing that look of surprise and then telling them how far he has come. Now I just want him to get his head up so I don't get the comments as much.

I have an endoscopy on Fri for my reflux. I don't mind the test. It's the results that make me nervous. My reflux is aweful and meds have not been able to get it under control in quite some time.... Praying for a good news.

16 August 2008

August 16

  • When a married man dies, his wife is called a widow.
  • When a married woman dies, her husband is called a widower.
  • When a childs parents die, the child is called an orphan.
  • BUT there are no words to describe when your child dies....

13 August 2008

August 13

Well, I found out that if I tickle Liams face while he is on his tummy he will lift his head beautifully. I can't wait to show Kathy (his PT) tomorrow! She's going to love it. Liam is doing better with head control. He is still wobbly but he doesn't drop his head like a lead balloon anymore. We ARE making improvements. I should be hearing from the VT soon and then we can get started on doing some of the therapy needed for his vision. I took Liam in for a check up and he was exactly 12 lbs. I was hoping for closer to 13 lbs. We decided to up his calories with formula to 30 Kcal per ounce. I still pump (it's been almost 9 months) so he does get some breast milk still. It's just that Liam can not handle much volume at all. He will throw it up. We are still stuck at right under 17 ounces a day. He does eat a bit better now which is a relief to my aching back. I can sit with him sometimes now and I don't have to walk fast all the time. Smetimes he latches well and will drink quickly. Usually when a therapist is watching! Ha!

Liam likes to babble these days. He sounds like he is saying real words. It's so cute to hear him talking. At least his head growth was doing well at this check up. He is still underweight and short. But he is getting there. He is finally getting into 3-6 month clothes!

02 August 2008

August 2

I am SO excited that it is finally August. Why? I love the humidity. No really- because Liam will start getting vision therapy at the end of this month. I feel like we are on borrowed time with his vision and because the therapist is off for the summer we are denying Liam opportunities that he needs at such a crucial time. I have bought more black and white toys and books in order to work his processing. It's frustrating to me to know that he can see but that he can't. And that I could help him but don't exactly know how. Liam finally had an improvement from one PT appnt to the next so that was AWESOME news for me. He his finally starting to use some of his muscles properly and we need to keep him going in that direction. He has a hard time trying to get his head up and centered. I know how much happier I will be when he can do that so I know he should be happier too.

I love Liams PT. She is so good with him. And she knows her stuff. She pushed him hard this week tho. He was fine with it until she decided he couldn't straighten his legs when he was mad. Well- that pissed him off and he went over the edge. I think she will back off a bit this next time!

Well- I had every intention of getting the kids "caught" up during the summer but , heck, that just isn't going to happen. What is "caught up" anyway? Look up unschooling and read the definition. That has become us. Am I bothered by that? Sometimes- but only when I compare. When I remind myself that we don't want to be like the gov't run system I can be at peace. But when Rylie compares herself and her skills to her peers she feels like she is behind at some things. But she doesn't see how far ahead she is in others. Does it matter that she doesn't know square roots, pi or the definition of Isosceles? When she needs to know it she will learn and if she doesn't need to she won't. That scares some people. Why? Because some insitition decided that a child should know something at a certain age. How blissfully ignorant they are of a childs natural curiosity, intelligence and desire to learn- especially when it isn't shoved into a time frame.

22 July 2008

July 22, 2008


After a follow up with the vision DR at Duke we got some good news. Liam's eyes are not keeping him from seeing. They are in great shape. At this point, Liam's lack of vision is neurological. SIGH... So what does that mean? I DON"T KNOW!!! She asked if he is delayed developmentally (well, yea, he only weighed 1 lb at birth) and she said he might need some more maturity. He can see his black and white image cards (I knew he could- at least I'm not going crazy yet) and he does see light and dark and shadows. So- because he progressed to the black and white images in the last 2 months since she saw him, we are praying he will progress even more in the next two months to where he can actually focus on me or any object. It will help him out so much with his physically development if he could see. He doesn't care about toys yet, his hands, etc... which he should be in love with by now. So- we are praying for MAJOR MATURITY in his neuro processing and development.

And I didn't get lost yesterday going to and from Duke! YEA!