March for Babies 2010

2009 March for Babies 

This year, on April 24, we will be gathering our Family Team together, aka "Christian's Peeps"  to walk in the March of Dimes annual "March for Babies" event.  Last year was a big success and this year we hope to surpass our goal from last year.

Even before having my own micro-preemie blessing of a son, I knew March of Dimes was a great cause.  I mean who doesn't want to support research for an organization that focuses on saving babies lives???  Then after having a baby born to soon and realizing, first hand, what a blessing the March of Dimes really is, my husband and I made a vow that we would ALWAYS support this organization.  

Here are a few reasons why the Lee Family loves the March of Dimes:

#1.  THEY HELPED SAVE OUR SON'S LIFE.  The impact of typing out that sentence goes beyond words.

#2.  THEY HELPED REMIND ME I WAS STILL A MOMMY WHILE CHRISTIAN WAS IN THE NICU.  They took a personal interest in my physical and mental well-being.  I had great support of family and friends but when your child is in the hospital for 4 and a half months, and you are there every single day, you find yourself spending a lot of time alone.  Alone, sitting by a tiny, precious child that you are not able to hold.  A child you have to ask permission before changing his diaper.  A child you are afraid to leave because each and every moment with him is so precious. 

The March of Dimes representitive, Jennifer, made a connection with Jason and I from the very beginning.  She checked on me and made sure I was remembering to eat and take care of myself.  They hosted a baby shower at a downtown restaurant for mom's of preemies.  She brought scrapbooking supplies every Tuesday to the waiting room, took pictures and had them printed so I would have them to use.  She provided me with all kinds of literature and NICU terminology. She brought in dinner on holidays for families with children in the NICU. She helped to make me an expert (self-proclaimed) on being a mommy to a preemie in the NICU.  She was a FRIEND.  She was such a BLESSING.  I will never, ever forget her.

#3.  THEY ARE FIGHTING EVERY.SINGLE.DAY TO SAVE LIVES.

#4.  WE THANK GOD FOR THE MARCH OF DIMES.  We did not plan on our son being born 14 weeks early.  No one does.  Premature babies are born every day.  When it happened to us we thanked God for the research they have done.  We thanked God for the many people who made donations that were able to support funding for their research.  The research that helped save Christian's life. 

I know that times are tough right now.  Our family has been struggling as well.   I ask though, if you are able, please donate to this cause.  Help our family reach it's goal.  Your donation is tax deductible.  We would love to have you walk with us on the 24th.  Email me angelkiss_16@hotmail.com  if you want to walk with us. 

To make a donation, click on the "sponsor me" button on my sidebar.  Every dollar truly does count.  Your support would mean the world to us.

We walk to honor our son, Christian, born 14 weeks too soon on Oct. 31, 2007.  He weighed 1 pound, 12 ounces and was 13 inches long.  We are always aware that each day truly is a blessing from God.

Holding my son for the first time, 7 days after he was born.  Words can not describe the feeling.

Thank you so much for your support. 

Let's all work together for a cause to ensure that one day all babies are born healthy.

LOVE,

The Lee's

Laryngotracheal Reconstruction

On Thursday we traveled to Portland to OHSU. Christian met with a Speech Pathologist, who is really cool, and we had a great visit. It was an extremely long day (to say the least). We had to wait a loooooong time to see each Doctor. Christian was not a happy camper due to the long drive, short nap, and mom and dad (trying) to get him to stay in a general area instead of running full force into every nook, cranny, and hospital room that he could.

It took a total of 5 hours to see 3 Doctors. Mind you, the actual time spent with each Doctor was about 20-30 minutes. Exhausting to say the least.

Our last visit of the day was with Dr. Milczuk. He talked to us a lot about laryngotracheal reconstruction . When we saw Dr. Milczuk for Christian's last surgery last May, he had touched on the idea that this procedure would most likely be in Christian's future. At the time I tried my best not to get worked up about that idea and just focus on what time would show us. There was always the possibility that Christian's airway could open up on it's own as Christian grew more.

I was kind of surprised when the doctor starting talking, right away, about the procedure. He said that he does not expect that Christian's airway will have improved enough to be able to take the tracheostomy tube out. He also told us that he generally does not recommend this surgery in children under the age of 4, BUT that Christian is a very healthy child who just happens to need a trach. He would benefit from getting the trach out as soon as possible, since it is the only thing holding him back from speech/language skills. On the same hand he told us that the surgery is a complicated one and is more difficult in younger children such as Christian.

The surgery would involve cutting a portion of cartilage from Christian's rib cage and forming it into a tube to fit into his airway. His airway would then heal itself, open, around the cartilage and then we would be able to have the trach removed.

We were told that there would be 2 options for surgery:

OPTION #1~ Christian would have the surgery and the trach would be left in. He would stay a minimum of 5 days in the hospital to recover. We then would take him home for a few weeks and bring him back to have the doctor put a scope down his airway to take a look. If all looks well and healed, the trach would be removed and allowed to close up on it's own. We would have to go back for more checks on his airway and I am not sure how frequently. Christian would be allowed to recover in the comfort of his own home (for the most part).

OPTION#2~ Christian would have the surgery and the trach removed all at once. This would require a hospital stay for several weeks. The first week or so he would have to be completely sedated because he would have a breathing tube down his nose and they could not take the chance that he would pull it out. It was explained to us that he would have to spend extended time in the hospital being weened off the medication that they use to sedate him and go through a rehabilitation stage after not moving his limbs in over a week. The upside to this option is that it is a one-time operation, with heavy monitoring for a few weeks and then it is done.

After hearing both options Jason and I knew that we were already leaning towards option 1. Yes, we would have to go back to OHSU a few times but the idea of Christian spending weeks in the hospital is unbearable. It is hard enough to imagine the 5 days minimum that we will be there after surgery. Christian pulled his breathing tube out so many times when he was teeny tiny. I can't stand the thought of the heavy sedation that it would take to keep him from pulling it out now that he is bigger and stronger.

Dr. Milczuk basically told us that he is ready to do the surgery when we are. All we have to do is call and schedule it. He said he would take a look at his airway and if he did not see significant improvement then he would proceed with the laryngotracheal reconstruction. He also told us that there is no hurry and to think about it.

So we have a lot to think about. It is exciting to think that Christian could lose the trach this year. It is equally terrifying to go through this procedure to get to that point. This surgery is a BIG deal.

What if we make the wrong decision?

Christian's insurance will definitely be maxed out after this, maybe even before it is all said and done. What if we can't find a secondary insurer who will take him with this pre-existing condition? At the same time there is nothing more important than Christian's health and we have to do what is best for him.

This is so hard.

It breaks our hearts to know that our son, who has been through so much, still has this huge hurdle before him. It will be a difficult one for all of us.

We are a strong family though and I know that just because you can not hide the hurt your heart is feeling, it doesn't mean you are weak. I mean, no parent can stand the thought of their child in pain. We know this is part of our path that we must take and that God is with us for each and every step.

We know that this surgery is a positive thing for Christian.

It means being able to say goodbye to his trach once and for all.

It moves us that much closer to getting to hear his voice.

It means having his room be free of medical equipment and supplies.

We trust Dr. Milczuk and know that he would never suggest the surgery if Christian was not ready and could not tolerate it.

We know that Christian handles surgery very well. He is always a trooper and his recoveries have gone smoothly.

We are doing some research and exploring some avenues as far as insurance. We are looking to possibly have this surgery in the next few months, when the roads will not be a concern for travel, with our hope being this will all be over with by this summer.

Please pray for us. Your love and support mean so much to us.

AND this little guy means the world to us.

taken December 2009

Boots & Books

The other night Christian insisted that his daddy put his boots on him. Once the boots were on, he was so excited that he ran around the house for about 20 minutes, up and down the hall, all the while checking to make sure we were watching him.



As I watched my little boy, with perma-dimples, running so happily, my heart was filled with an overwhelming joy. God's love is right here, surrounding me every single day. How amazing is that?

It doesn't matter if my house is a mess, or if I've gained 10 pounds, or if Jason is not back to work yet. All is well because God is with us and this is all part of His plan for our lives.

THIS is our story and we are blessed to have it punctuated with perma-dimples. :)

So Very Blessed

So Very Blessed To Be......

The LEE Family Three

Happy New Year!

Here Comes Santa Claus!

Christian and Daddy waiting for Santa

Here comes Santa and the firetrucks down the road!

Me and my Boy

Hey Santa What's Up?

Cool truck Santa!

Nice Beard Santa!

Christmas Morning

Festival of Lights

This year at the Festival of Lights we bundled up Christian so he could walk through. He was having a blast until he fell down, face planted the pavement, and cut open his upper lip. He was okay though, only cried for a minute, so I wiped away the blood, dirt, and tears, and away we went. He road on top of Daddy's and Grandpa's shoulders the rest of the way with a big, bloody smile on his face. I know that sounds grotesque but it is just the way it was.

Sabrina and Mason joined us this year again and it was so much fun having them!

I was able to get this GREAT picture of Jeff and Sherri

Christian loved the view from Grandpa's shoulders

We love going to the Festival of Lights and have made it our little family tradition.

We are looking forward to doing it again next year!

Our Tree and The Cuteness

Hello, It has been awhile......

I can't seem to get into posting on my blog lately. It has turned into a once a month thing and I am not going to beat myself up for that. For now, once a month is okay with me. :)





Here are 15 things (in summary) that I could have posted about but didn't:





1. My camera is on the fritz. I am sad to say that I don't think it ever fully recovered from the dip it took in the creek at Jubilee Lake this summer. I have been taking less pics and just enjoying those special moments, storing them in my memory instead of my hard drive.





2. Our tv went out last night. We have only had it for a year. Good thing we bought the warranty. I am one of those gals that usually always has the tv on for background noise. This time of year I have on whatever cheesy Christmas movie I can find. I don't sit and watch them, I just listen to them as I go about my day. I LOVE cheesy Christmas movies......Jason doesn't.





3. Christian weighs over 22 pounds now! He is also sprouting up. I think he will be as tall as his daddy (at least). He is on his 2nd peanut butter and jelly sandwich as I type this! He is such a big boy now and I can hardly believe how far he has come, how far we all have come. I am brought to tears each time I think about it. God is so good.





4. I cooked Thanksgiving dinner for my mom, brothers and their wives this year. It was a lot of fun. We played Rock Band later in the evening and I discovered a hidden talent....I rock at Rock Band! Jason and I are going to save money next year and buy it. So much fun! Christian loved it too. :)





5. This Thursday we are traveling to OHSU in Portland to meet with 2 Speech Pathologists' and Dr. Milczuk. We are going to learn some useful tools to work on with Christian to help him to vocalize. I am so happy that Jason will be able to go with us for these appointments. (Since I started writing this post we have cancelled these appts., due to weather, and will be going down the end of January)..





6. Jason has been laid off since November and it does not look like he will return to work until sometime in January. It has been so wonderful having him home. He has done several little projects around the house and keeps plenty of wood chopped up so that our fireplace stays nice and toasty. I love having him home!





7. We are on a serious budget. We put ourselves on a budget at the end of summer to help prepare us for this winter layoff. Now that Jason is actually laid off though, we are on a serious budget because we have to be. As weird as it sounds, I actually like it!





We see exactly where our money is going, not buying things we don't need, and most importantly we are utilizing the things we already have. I am getting creative with the meals I prepare. We squeeze ALL of the toothpaste out of the tube. I said "no thanks honey" when my sweet husband offered to take me to see "New Moon" in the theater. I dug into my hall closet and found bottles of shampoo and conditioner, shower gel, face wash, all needing to be used. How long have those been in there? When wrapping gifts this year, I used ribbon and wrapping that has been hanging out for years in my Christmas stash. I hosted an At Home America party in November and earned lots of FREE stuff that I was able to give away for Christmas gifts.





We have also realized how easily we could be debt-free if we stuck to a budget like this once Jason starts working again. That has got us very excited! We have a great feeling about 2010.





8. I really, really miss my Dad so much and wished he lived closer. The holidays are tough when loved ones are so far away. Love you dad!





9. Last night I watched Four Christmases and laughed really hard. That movie got such harsh reviews.............I loved it!





10. I have had great success with my Scentsy business and I am really enjoying it. :)





11. Our car is actually washed, waxed and snuggled into our garage! Anyone who knows us knows this is a BIG deal. Way to go Jason!





12. Four of the five fish died in our pond last month and all on the same day. Found out I was supposed to stop feeding them once the weather turned cold because their bodies can not digest the protein in their food when it is cold. One fish survived though. We named him "Lucky" (seemed fitting) and he now resides in a large garbage can in our garage. We are hoping he makes it through the winter so he can swim in the pond in the spring.





13. We put our Christmas tree up the Saturday after Thanksgiving this year. Christian has been very good not to touch it. He stands by it with his hands behind his back and looks at all the lights and ornaments. It is very sweet.





14. Christian is doing very well with his signing. He now signs: milk, more, cracker, sorry, please, wash hands, play, tired, mama, dada, I love you, eat, cereal, water, drink. We are working on thank you, grandpa, grandma, and many more words. :)





15. All Christmas shopping is done, wrapping is done, decorating is done, packages have been mailed. I have done some baking too! Now I just need to send out Christmas cards. :)

Happy Holidays!

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