Enough Appointments Already!

Well, today all appointments for Landon and McKayla's surgeries were scheduled.  Yes, McKayla has to have surgery too.  McKayla has strabismus wherein her right eye doesn't track with the left.  As many of you may know, she has been in glasses since she was 10 months old to correct this and excessive farsightedness.  Because her eye hasn't improved with the ever increasing strength of her glasses, the doc explained this was muscular issue which requires surgery to correct.  Therefore, beginning Jan. 16, we will have 5 doctor's appointments and 3 surgeries to contend with - all within 2 weeks.  

Landon's surgery will be done in 2 parts.  First will be the eye measurement and ear tubes.  Because the hospital does not stock the implants, the cataract removal and implant placement will take the following week.  Each surgery requires a pre-op appointment with the pediatrician for medical clearance as well as follow ups the day after surgery (are you doing the math for the co-pays here?).

The bright side?  These are all relatively minor surgeries and the kids can go back to daycare the following day provided they feel okay and, after the follow-up appointment, of course.

Last week, Landon saw a pulmonologist who cleared him for surgery, however until he is seen again in February (yet another appointment), Landon has to stay on oxygen while he sleeps.  This means naps and nighttime.  The doc said that Landon's O2 sat drops could be due to the lingering effects of the RSV, but the doc said we will investigate that issue further, after we get the cataract surgery taken care of.

So, hopefully this won't put too much of a damper on the celebration of McKayla's 3rd and Landon's 1st birthday (which will include - you guessed it - their well check ups with the doctor). Yep, you read correctly - McKayla will be three in 5 weeks; Landon will be one in 7 weeks.  I can't believe it either.   

Landon's 9 Month Portraits

Okay, so I'm a month behind in posting them...it's not like I haven't been doing ANYthing...

Some Holiday Fun!

Send your own ElfYourself eCards

Landon finally got his ' Get Out of Jail Free' card!!

Okay, the hospital is probably much better than jail, but there are some noted similarities, especially for a contagious baby on a leash (aka oxygen tube and pulse oximeter). Landon was admitted to the hospital, as explained in a previous post for RSV which ended up turning into pneumonia. Here is Landon's cell within a cell, or the "birdcage" as I called it, that he resided in for 13 days:



Now, RSV, or RSVP as I kept wanting to call it, is VERY contagious. For that reason, everyone that came in had to wear a yellow gown and face mask so they would not get it and pass it on. The positive side to that is that we got the room to ourselves!

Rather than go into the lengthy sordid story, suffice it to say that Landon is doing just fine now.  He, by all appearances, has recovered from the RSV and pneumonia, however, he still requires oxygen while he sleeps.  So we were sent home with oxygen tanks and a portable pulse oximeter.   We are quickly becoming our own medical supply company!  You should have seen how large my eyes got when the home care nurse explained that oxygen tanks should be stored laying down because if they get knocked over, they can take off like a rocket (not likely to happen, but scary to think about nonetheless)!

Before checking out, Landon was seen by a pulmonologist who thinks that Landon may have sleep apnea.  We will need to do a sleep study in the near future to confirm and find the best treatment plan.   Sleep apnea is apparently very common in children with Down syndrome.  The interesting thing is that Landon could have had this all along.  Now, it may seem crazy to be thankful that my little dude got sick, however, had it not been for this hospitalization, we may never have known that his oxygen saturation was dropping when he slept.  Not having enough O2 in your blood is not good for you.  According to the doc, it affects IQ, memory, concentration, behavior, among many other things.  I'm glad we know now, so it can be addressed.

For now, the cataract and ear tube surgery have been postponed until Landon has "completely" recovered from the RSV.  I imagine it will take place sometime in January.  I was getting worried that we were close to Landon loosing complete use of his eye since it sometimes doesn't track with the other eye.  Fortunately, Landon's opthamologist stopped by and reassured me that we are nowhere near the threshold of complete loss, though she wants to get the surgery done as soon as possible.   

And now, I'll leave you with some pictures...

This is when Landon had all three leashes on - IV, oxygen and pulse oximeter.  It was not fun trying to hold him and not get tangled or pull and step on any of them!  Take a look at his right hand, where the IV is.  We dubbed this "the club" because they must have used a whole roll of tape and put a plastic "shield" to keep him from pulling the IV out (mind you this was his THIRD IV).  That thing hurt when you got hit with it!

And here he is saying, "Yay!  I'm finally home!"

Big sister McKayla was very glad for "Brudder" to be home, (but not enough to share her toys)...

And finally, the future Liberace...

Dear Santa,

If you would please, I would like to you to thank the elf for me that asked you to send the kind and generous gift that we received in our mailbox last week. We are eternally grateful.

Love,
The Carpenters

Little Dude is in the Hospital

Starting last Friday, Landon developed a fever, which over the course of the weekend, turned into RSV. Sunday night, though his fever had gone, Landon seemed to be struggling to breath. I did a breathing treatment and put him in a steamy bathroom, but those didn't seem to help. I called the on-call pediatrician who said to try the breathing treatment again and if I noticed no difference, then take him to the ER. Well at 11pm Sunday night we headed to the ER. Landon was tested for RSV and had a chest x-ray to check for pneumonia. The chest x-ray was negative, however he was positive for RSV and because his blood oxygen level was a little low, he was admitted.

Yesterday, he seemed to be struggling even more to breathe, despite the every-three-hour breathing treatments and oxygen mask. His fever would come and go and he would sometimes be happy and playful and sometimes sleepy and lethargic. The doctor ordered another chest x-ray which, this time, showed that pneumonia had set in.

Landon is now on an antibiotic, a steroid of some sort, the breathing treatments and oxygen. Today he seemed to feel better and, though sleepy, he was happy and playful. He also seemed to struggle less with his breathing. However, he hasn't been eating as well today, and, since the never-ending snot coming out of his nose was getting thicker, an IV was put in to make sure he was well hydrated.

Right now we don't know how much longer he will be in the hospital. Essentially, he has to be off the oxygen for 4 hours and maintain his blood oxygen level in order to be released. Unfortunately, this means he will not be having surgery to remove the cataract next week.

Flower Girl Dress Shopping

McKayla has the proud honor of being the flower girl in my counsin Kristie's wedding next June.  This past weekend, we went to the bridal shop to try on different dress styles to determine which would best suit her.  It was quite amusing to watch her twirl, dance and prance in the fancy dresses!  Here are some pictures of the dresses we tried on.  (Just a note, none of these dresses are the ones she will wear, we just wanted to determine the size and style that looked best on her and the black dress ended up being our favorite.  Pictures of her actual dress will come later.)

Photos by Debby

Check out these really awesome photos that Debby took today. She is a very talented photographer and has just opened for business. Check out her website for some phenomenal examples!

The cataract

Just about a month ago, we discovered that Landon has cataracts.  In both eyes.  The one in his right eye covers about 80% of the lens, completely obstructing his vision.  The one in his left eye is miniscule and is not hindering his vision - but we have to keep a check on it.

Click here to see Wikipedia's definition of the lens and a diagram of the eye.

Because the cataract is obstructing his vision, the lens has to be removed.  In order for him to be able to see, they will put an implant in his eye to replace the lens.  If all this doesn't take place soon, Landon will lose use of that eye.  Right now, the surgery is scheduled for the second week in December.  

In addition to the cataract surgery, Landon will also have ear tubes put in.  Now here is my question about this...the doctors have not been able to see the eardrum in his left ear...so how are they going to put the tube in?  The doc said, "it can be tricky."  Not quite reassuring and we know other that have had to try several times.  The problem is that Landon has teeny tiny ear canals, which is a common trait of children with Down syndrom.  Well, we'll see how it goes!  

Back to the cataracts...I encourage those of you with infants, whether they have Down syndrome or not, to keep a check on the eyes.  I think it is a routine screen for well visits, but, as in our situation, it can be missed.  According to the doctor, if you live old enough, you'll eventually get a cataract, so they are just a part of life.  The problem they present in children is that if vision is obstructed long enough in the eye, the brain begins to ignore the signals from that eye and it will become useless.  

Here is the picture I took that made me think something wasn't right:

If you click on the picture you can see a larger image and notice the grayness of the right eye.  Cloudiness of the eye can mean many things, and fortunately for Landon, the cataract is one of the least serious.   Vision problems are more frequent in children with Down syndrome, however it is not exclusive so any child could be susceptible.

We'll let you know how everything goes after the surgery.  At some point, Landon will also have to wear glasses, just like big sister McKayla!

Dear Santa,

I have but one wish on my list this year.  I know things are tight in this economy, but if you could see fit to bring me my one wish, I would just be so happy!  

Love,

McKayla

P.S. Just in case you were wondering what to put in my stocking, I would love some Dora the Explorer decals to go on it!

My thanks giving

When thinking about Thanksgiving and what I'm thankful for, a multitude of thoughts come to my head:    

I thankful for my husband who is sweet, gentle and funny and for how great of a father he is.  It is his devotion to me and the kids that makes my heart pound with love and joy.

I'm so grateful for the two beautiful babies I have been blessed with.  McKayla constantly amazes me and makes me laugh.  She has such a caring nature and it makes me soar when she wants to take care of "Brudder" by feeding him, holding him, covering him with a blanket or checking on him when he's fussy.  It is amazing to me the level a compassion and caring that a 2 year old can possess, of course, two minutes later she'll be pulling the toy he was holding out of his hand!

I can't even begin to enumerate the ways that I'm thankful that I have Landon, and his extra little chromosome, in my life.  I'm definitely grateful that he has been an easy baby to take care of!  But, I'm also appreciative of everything that it means to have a child with "special needs".  The education and reality that folks with disability are just people with abilities who care, love and feel just as every one else does.  The new friends, a wonderful group of families linked by that extra chromosome, that have become a source of information, support and, well, fun!  The fact that I have an infant educator to help show me how to enhance his development.  But, most of all, I'm grateful for every little smile that lights up Landon's little face, that lights up mine.

My eyes well up with tears when I think of how truly thankful I am that my circle of family and friends has fully embraced Landon as he is, with no question, with no judgement.  He is appreciated for who he is and not seen as different.  

I don't think I'll ever be able to express how thankful I am for my parents and all they have done and still do for me, though I'm sure they know that I now realize their wisdom, being a parent myself.  

I owe much gratitude to the rock in my life, Debby.  I often feel that I don't reciprocate the level of boundless friendship as bestowed upon me, but she is there for me everyday, for everything.

I am also thankful for the wealth of friends that I have been blessed with.  I'm truly fortunate for all of the wonderful people that are part of my life.  I thank you all and wish you a happy, wonderful Thanksgiving!

Landon's Button

So I had the kids in the tub tonight, and McKayla, as usual, likes to help clean brother.  This consists of using the "bucket" as she calls it to pour water on him.  Mom was in the bathroom with us and notice McKayla pouring the water on Landon's little boy parts.  Mom asked her, "what are you pouring water on?"  McKayla innocently proclaimed, "brother's button!"

The Ladybug, the Pea Pod, the Pit Crew and the Convicts

Here are some pictures for your enjoyment.  The are from the I mean Carpenter and Matson family Trick or Treating adventure.  

2008 Buddy Walk

We participated in our first ever Buddy Walk on October 11 of this year.  The event takes place all over the country in an effort to raise awareness about Down syndrome.  It was a beautiful day, set in the gorgeous landscape of the University of Richmond.  The walk took place around the lake and many events were set up for both young and old.  McKayla especially enjoyed the moon bounces and much to her delight, yes, her icon, Dora the Explorer was there!  Landon, well, he was mostly oblivious to the goings-on.  

I, on the other hand, was utterly excited all day to see so many families and their friends participating in this event.  My only disappointment was that, because I volunteered to help with the silent auction, I didn't get to spend much time with, or take pictures of many of the folks that I have come to know from being a part of the Down Syndrome Association of Greater Richmond (DSAGR) and the playgroup.  But, I did get a picture of all of the Buddy Captains with their families!I was also quite tickled to see many of the folks that I used to work with there in support of Neil Lent.  

With so much negativity that fills the average person's mind about Down syndrome, it was uplifting to see a gathering of folks who recognize the beauty, ability and delight that an extra chromosome can be.  I know my eyes have been opened to a world that I just would have been indifferent about and I'm thankful to my little dude for that.  

I would like to thank each and every person that donated through Landon's firstgiving site.  All of you helped to raise $530 for the DSAGR which contributed to the over $50,000 net for the entire event!!!  A big, huge thank you to Rex, Joyce, Lora, Donna, Megan, Tammy, Kristie, Shannon, Pam, Mary, Nakisha, Cari, Mr. & Mrs. Sharpe, Krazy Kousin Kristie, Uncle Bob, Aunt Gail and Uncle Randy.  Also, I want to say a big, huge thank you to Andrea, Aidan, Dave (Dad), Bob (Dad), Ms. Heather and Ms. Shannon for walking with us!  I can't wait until next year!!