Monday, March 30, 2009

P's and Q's

So as I wrote last week, it was extremely emotional. From all of Lucas' stuff and Joshua being, well, 3. Anyway, all of that emotion is gone, thankfully. But in the midst of it all there is always something good. As I reminisced about last years happenings, I started delving in to the wonderful world of chromosomes. Now I failed high school biology. I hate it. I don't get it. I just don't understand how it all works. I am happy in my ignorance. Until I need to know something, that is. So as I am trying to understand chromosomes, I realize not many people 'get it' either. So here is my quickie Rachel-ized version. As always there must be an understanding that I could be wrong and I am always easy to admit that.

There are 23 chromosomes. 2 of each. Totally 46. There are some long ones and some short ones. Ok, that's all important stuff. Now each chromosome has pieces that are all numbered. I think up to 34. The short ones are numbered to less.

Following so far?



So now, you can have deleted parts of chromosomes, some that are extra, and some that even get twisted into circles. Crazy, I know.



Its totally confusing. I know. I am still confused a bit.



So now let me explain Lucas' chromosomes. He has what is called an unbalanced translocation of 13q and extra material of 20p. Ok so I didn't explain the p's and q's. So each part of the chromosome is split into 2 parts. The top is p and the bottom is q. Not sure why, just go with it.



The unbalanced part is that its not even. So if the missing piece of 13 was swapped out with 20, that would be a balanced translocation. So if Josh or I were carriers, we would have that. There would be nothing wrong because we have all of 'our parts'. We chose not to get tested. We believed that this was a random thing. If Lucas were our first baby and we wanted more, we might chose to get tested. But because we have a healthy 3 year old, we chose not to.



Ok, so there are people out there with deleted 13's and there are people out there with extra 20's. But to put those 2 together there is only one ever known case of that. The more that I get into this 'world', I am realizing that this is such the case with so many kids. Knowing the exact diagnosis doesn't really tell you much sometimes. There are syndromes and others out there, but then there are cases like ours where its almost impossible to know. They have a list of symptoms of certain chromosomes, but you could have 1 or all of them. Its a very big box.



So that's what I've got so far.

In other news I could not be prouder of my Lucas. Seriously. He is making the most amazing progress its just incredible. He started eating solids like a little champ. In these last few weeks he's starting opening his mouth to eat! That may sound like a little tiny thing, but for the baby who had this oral aversion to things, opening his mouth to food is crazy!! He's still not into sweets, but its ok. He'll learn. LOL. So we tried peas Saturday and I think they made him gassy. So we'll skip that next time. His little tummy can't take the extra issues with that. And rice cereal makes him gag. Not sure about that one either.

So that is my bragging moment. I am so thrilled for my baby! We have a vision appointment Wednesday that I am excited about. I am really curious about his right eye. I think that there is something wrong with it, and I am hoping we can get it 'fixed'. I really really like this DR and I know he'll have some advice. We have audiology next week and I am excited to prove them wrong. Is that weird to be excited about that? Either way, I am. Ha. There may be an impairment, but not a significant one that is for sure. This kid wakes up to me making the tiniest noises, in the other room. So I am doubtful they'll me telling me the same news this time around.

Friday, March 27, 2009

Look what I can do!

Check me out! 14 pounds! Woo-hoo!

I only look chubby.

Hanging with momma!
Lucas is doing so great. We are eating solids daily now. Its so awesome. He's loving sweet potatoes. I made baby food and that is what he loves the most right now. Tomorrow we're trying peas.
Lucas is doing great physically. He can hold himself up on his hands and knees for about 2 minutes. I am soo proud. He can also hold himself up sitting too. He couldn't even attempt this last week. Kim, our OT is going to be gone next week and I cant wait until she comes back to see his progress. I am so excited and so utterly thrilled about my little babys amazing progress. Check out the video. He's so funny.



video

Thursday, March 26, 2009

A week of tears

So today marks a year. A year we never thought we'd make it through. By far the hardest year ever. A year of sadness and enormous miracles. I never in my wildest dreams thought I'd cry so much, love so hard, or be so blessed.
I have had a really hard week. There is a bunch of reasons why. Well, for one, I've been remembering the sorrow I felt a year ago. Thinking about the change my life took that week. I've been really emotional, PMSy, if you will. But I've also had a really hard time with Joshua. He is a spitfire, to say the least. I try my hardest at being a good mom. I don't let him get away with anything, yet he seems to think that he should try every.single.second! It is not funny, so please don't laugh. People use the excuse that he's 3, but they aren't in my shoes. It has been really bad this week.

Anyway, I had a whole blog in my head last night as I cried myself to sleep. I had a great story to tell, witty (I wish) and full of emotion. But as my day has already been bad, this is what I am left with. I cried this morning over Joshua. I cried in the car because I know that I am forgiven everyday by my Lord. I'm crying now because I know I need His grace. And well, now I am just crying. What is wrong with me?!

No I'm not pregnant.

As I end this super exciting blog post, I am reminding you to pray for the family I mentioned in my previous blog. I am not sure why I feel so emotional over this family that I do not know, but for some reason, it is on my heart. They need comfort, hope and peace. That is what I prayed over and over for last night. So please pray with me for those things. Thank you.

And thank you for all of the prayers that helped me through this last year, and that get me through each day! I would have never made it, that is for certain.

Tuesday, March 24, 2009

a new blog

So I have been trying to figure out how to search for blogs. I finally found a way. As I sat here tonight trying to find moms to connect to, I came across a blog that I wanted to share. Sadly, my computer won't allow me to open it and I can only view it through google, where I do not know how to comment. I felt the need to comment because I was so touched. I sat here sobbing my eyes out for this woman. She has 4 boys and was pregnant with a baby girl. At their 20 week ultrasound, they were told devastating news. Their baby has Trisomy 18. Basically, there aren't many surviving babies born with it, and they do not live. I wish so badly to hug this woman. To tell her how brave she is. To tell her that the doctors DO NOT always know what will happen. That each day they are blessed with that baby are the most precious moments.

Can you imagine? Can you even think? What if you were told that? What if it were true? I have been in those shoes, thankfully briefly. I knew that I would see my baby and hold him. It was the will of God and I believed. But what if your baby was taken away? How on earth would you deal?

I am praying tonight for that family. I am praying that this baby is a miracle. That she will be born, ALIVE!! I am praying that she will not only beat the odds, but BE the odds. That she will be Gods miracle, to tell everyone that God can do anything.

www.buddzoo.blogspot.com

Sunday, March 22, 2009

One Year Ago

This week marks a year since our 20 week ultrasound with Lucas. I am remembering it like it was only yesterday.

As we planned on our 20 week gender scan, I couldn't wait. I was so anxious to find out that I was having a little girl. I could hardly keep it together. My mother-in-law Alice tagged along with my hubby and I that day. My family is back in NY, so they were waiting impatiently for a phone call. We arrived so giddy at our doctors office. We were taken back and I hopped up onto the bed and exposed my belly. As Alice and I joked and and giggled, we noticed that the tech was not being very friendly. I remember being a little annoyed with her, but shrugging it off and going back to laughing. She asked if we wanted to know the gender and we said YES! She said in a dull voice, 'its a boy'. We let out a little sigh of disappointment and then went straight to saying, oh well, yea! Lucas!!

She then said, I am finding a few issues. As she described what she saw and what it meant, tears filled my eyes. There was a huge amount of fluid in his chest cavity making his lungs almost unable to be seen. His cerebellum was extremely underdeveloped, he was under sized. All things that could possible stop the life of the baby. As I sat there crying, Alice crying and Josh speechless, nothing could be said. She gave us a few pictures and we went to the doctors room. When the midwife came in, she too didn't know what to say. There were no words. We were set up with an appointment the next day with a local perinatologist.
*The black that you see is the fluid around the lungs. The entire cavity should be lung tissue.*
The next day we were more hopeful. After a day and night of sobbing hysterically, I had woken up a bit more lighthearted. I'm not sure why. We went in and got a mini biology lesson with the Dr before he started the u/s. He basically gave us the statistics of age-genetic problems, stats of live births, ect. To sum it up, he said that that baby will probably not survive. If he did he would not live long at all. But after he started the u/s, marker after marker for certain syndromes were negative. One after another. As each went by, we smiled more and more. He was still not hopeful, but we had faith...building. He performed an amnio that day too. Talk about unprepared.


*The after shot. Only a tiny amount of fluid was left after the lungs grew perfectly. Lungs still have never caused Lucas any problems!*

Not to go through the entire pregnancy, we have a healthy baby boy. He was born with a chromosome abnormality. He has a deleted 13 chromosome and an extra 20. There is only one other case ever recorded of the exact numbers. We are already so far from that case history. Something that I wish I had never been told about. We are now writing the history of this and we are going to be a light instead of a dark story.

Thanks for reading about my miracle boy.
*My miracle baby. 12 weeks.*


Thursday, March 19, 2009

Seattle Moms Deal Finder

Here is a new website I found through antoher blog. They are giving away a free Entertainment book. Check it out.
Seattle Mom Deal Finder Blog

My boys

My little lucky charm!


I have teeth!

My sweet kiddos.


Swinging for the first time.
One big, one little.

Not much happening these days. I am keeping busy with budgetting and baking up a storm. Ckeck out my other blog to see some of the goodies. Lucas is developing so great. It seems like he just grows leaps and bounds. Its incredible. He also got 2 teeth. I just thought that would teeth would be something that would come later for him, but what do I know? He got 2 bottom at the beginning of this week. They were all the way through. He is starting to put things in his mouth and we are still attempting food. Today we tried sweet potatoes and he did great. I'll keep posting as things progress. We are just keeping busy and trying to not get sick! :o)

Saturday, March 7, 2009

Lucas Henry

We had Lucas' 6 month pictures done yesterday. I was so excited to find a pair of skinny jeans for my skinny boy. Talk about stylin'. He was wearing Burberry jeans. Yes, its true. Retail $110! Yikes. They are a bit long, but they fit in the waist which is pretty rare. So he'll be looking pretty good for a few months at least. Check out these oh so funny pictures of my little man!









hilarious

So last night I got together with the women in the family. My mother in law, aunt in law, other aunt-ish, and cousin. My sis in law was out of town. Boo Maggie. Anyway, we had fondue and girl time. What could be better? Well how about the addition of a sweet wonderful baby, laughing histerically! We were sitting enjoying our chocolate fondue and talking when I thought I should entertain my kiddo for a few minutes. He had been sitting peacefully for about 45 minutes and I grabbed him and started being silly. When all of a sudden, he started belly laughing. Usually his laugh is short and sweet. But last night I was dying. Tears steaming down my face laughing. It was so cute. We caught the tail end of it on video.
videoI'll be posting last nights food pictres on my other blog Kitchen Central

We had a blast and we're definitly looking forward to haveing another girls night.
Georgette, Robin, Joshy, me and Alice

Alice looking cute!

Me being a dork making my kiddo laugh!

Thursday, March 5, 2009

Wiffle Ball

Who would have thought that my little old man baby would be into balls? Well, not me. Kim and Kama (our therapists) came over Tuesday to work with Lucas. He was doing well and then Kama pulled out a wiffle ball. He was mesmerized. Well, so was Joshua. It was a struggle to keep Joshua away while we were working with Lucas, but eventually we distracted him. :o) They left the ball with us and he has been glued since. Its just funny. I guess he likes it because of the depth, shadows and maybe because he can put his fingers in the holes. Whatever it is, its a cheap baby toy!

I will say that Lucas is doing good with his hands. He is reaching for things as soon as he sees it in front of him. I am so proud. You forget what babies are 'supposed' to do, and just get excited about all of the little things that he accomplishes. The therapist remarked to me that, he's doing it. Look at how far he has come! I am not saddened that he isn't 'up to par', its just weird to see little babies doing things he hasn't done yet. But in no way do I envy that. I am blessed with a happy little boy, a love of my life, that teaches me something new each day.

Here are a few pictures of Lucas and his new toy.


He's starting to put things in his mouth. Well, OK, near his mouth.



Using his feet to help it up near his mouth.

Wednesday, March 4, 2009

March for Babies

I posted a link to my friends blog last night and actually decided to join her and her family in the March for Babies. Its not just for preemies, but for NICU babies too. I am excited to participate for us, and for Heather. She has been a huge support for me, even though we've never really met. :o)

If you'd like to donate, please do. You can donate on my page here


Thanks!

Tuesday, March 3, 2009

Sharing

I am blog obsessed lately. (Like I have the time to sit around and read.) But I thought that I would share. Who couldn't use extra money from saving? Hmm, maybe some. But no one that I know. :o) So please check out a few of the blogs that I am reading.

One other one that just brought me to tears today is my friend Heathers blog. She has miracle babies, 3 of them. Their birthdays are coming up and she made a video montage that I think everyone should see. If you have a few minutes check it out.

Mccann Happenings

I'll be back!!!

Monday, March 2, 2009

Prayer

So I thought I would write blog about praying. I had mentioned before about how I am trying to better about praying. Not just when I am in need, but everyday and for others. We started praying with Joshua every night and I have noticed a huge change in him lately. I'm praying for all of my friends, something that I never really did unless I knew something major was wrong. I totally believe in prayer. If I didn't I couldn't even explain to you how different my life would be. I know that I wouldn't be married still, I probably wouldn't have Joshua and I know that Lucas would never have made it to us!! He is my miracle baby no doubt about that one. But something happened that I am taking in faith this past weekend. As I went to bed Friday night I prayed for my friends and family and for my husband. That he would be able to find a new job. Something that made him happy, successful, productive and a good provider. That a new job would come to him without searching or working really hard to find. So Saturday afternoon we got a call from Josh's dad giving Josh a phone number of a guy who knew of some jobs. I know that it doesn't sound promising, but that is what I am taking in faith. For Josh to be happy, he would be doing something affiliated with the Army. If you know Josh, you know that's what he loves. Well, this guy was a retired something or other who worked on post as a head of something. (LOL) He was working out at the gym where my father in law works out and if you know Bill, he eaves drops and talks to everyone! So this guy was talking about how they had job openings and that Josh should call him. Anyway, I am praying that this is exactly what I was praying for. A job on post, near home, working with the Army. Ahh, that just sounds perfect. He already has 8 years toward retirement with the government too, so it would just add to it. I don't want to start getting excited, but the timing is perfect.

So that's my post. I have new posts on my other blog too www.doubledoubleu.blogspot.com

I'll also add a few pictures, as always.



I made Josh take a picture of me. I'm not a fan of full body shots, but I figured i should take one. I'm still only down around 25 pounds, but hey, its better than being up 25!