Christmas 2011

Christmas has come and gone, but I have to admit that this Christmas was even more special than any of the years before.

Xander had his first taste of Christmas this year and he had a blast with all the commotion and all the presents, but I think he loved trying to eat the wrapping paper the most.

Christmas eve Xander got to meet his great grandma and grandpa Larson for the first time and he also got to meet his great great grandma Bly, watching them cuddle him brought tears of joy to my eyes. I'm so happy that they were able to have him near them for that night and to be able to see him as a "normal" baby and not one with tubes all over him or going inside of him as most of us have.

Xander continues to grow stronger as the days come and go and he continues to amaze us as time goes on. In just 5 more weeks we will be celebrating his 1st birthday what an amazing date to look forward to as of right now!

Getting so big!

So just a short update on Xander.

Tuesday night (12/13) he decided he was not going to keep his NG tube in what so ever it did not matter what we did he was not going to happen.

Well the next morning ( which so happened to be my birthday) I gave him a bottle and he took it like he had be drinking it forever!!

He's doing pretty awesome at having a bottle and I'm so happy that I have not had to deal with the dumb NG tube for the last 5 days!!

Xander has started to do the army crawl but I caught him on all fours this afternoon which made me smile and cry. He's development has come so FAR in the last 2 months that really we were not expecting him to start being mobile until he was 1 so to see him prove them wrong again is WONDERFUL!!

I want to wish everyone a VERY MERRY CHRISTMAS and remember the true meaning of Christmas!

10 months WOW!

WOW 10 months really?

Have you ever just looked at one of your kids in such away that it brings tears to your eyes? I have with all of my kids but today as Xander smiled his HUGE smile he does ever morning i just got teary eyed. I just stood there looking at him and brushing his little hairs away from his eyes and just smiled with tear filled eyes. Once taking him out of of his crib a squeezed him a little bit harder than usually. and kissed him all over making him laugh.

Xander is 10 months today, it has been 10 months of learning, waiting, crying, and worrying, and 2nd guessing yourself as well, but really its no different than any other mothers normal worry, yea us heart moms may have more meds to give out more doctor appointments to schedule more techniques to try on getting them to gain weight or even more techniques on getting them to be healthy, but really no matter what anyone's situation is healthy or non all moms have their worries.

I was in the store the other day getting baby stuff of course ( gotta get those pounds on him lol) as i was checking out the lady asked me how old my baby was that i was buying for a replied " he will be 10 months in 2 days" at that moment it hit me "oh my gosh Xander has over come the odds that were given to him" and immediately my eyes started to fill AGAIN (for one that hates to show emotions really, Xander definitely has turned me into the biggest WEEPER lol) The poor clerk just looked at me and asked if i was ok, i stated yes just tears of joy, she asked why so i simply told her Xanders story.

Of course once all was said and done the lady had tears too, but she told me that she was sorry that i had to go through all of this and that he had to as well, i stated I'm not sorry and nether should you, life is about teaching us things and loving things that we never thought was possible and showing us the strenght that is inside of us at all times but only comes out when we truly need it because we tell ourselves we are not strong, life is about treasuring the things that really matter most in life and Xander taught our little family that we can survive ALL.

So as well know the holidays are here, thanksgiving for us this year was pretty different for us but not in a bad way. We stayed home due to Xander getting sick the day before and i made my very first thanksgiving dinner all on my own it was AWESOME to say the least, but it was very memorable as well. It was just us for a change and in a way very peaceful, of course we missed the family, but it was just nice to sit home and celebrate with just us.




Now Christmas is right around the corner and i can not wait to see what this little man does with all of the presents around the tree. He already likes to get under the tree and play with the little ornaments that are close enough for him to touch lol.

This holiday season is different for me in so many ways. We have living proof that true miracles really do happen and i have 1 very inspirational miracle that i get to hold each day along with 4 others that amaze me more and more as the days come and go!

Our adventure!

Happy Halloween!! I love this holiday, seeing all the cute little witches, vampires, and ghosts walking around. This is Xanders 1st Halloween, but will be inside tonight helping mommy hand out the candy to all the goblins and staying warm!

We've had some big adventures these last few days. Last week on Thursday Xanders NG tube was bugging him tremendously, I decided that I was not going to retape the tube down if it started to come up. As the day went on he kept pulling at the tape and was making that tube come out more and more to where it was starting to bug me, so finally I had enough of it and pulled the tube out, knowing that Xander would ether need to start taking that bottle or I would have to put it back in. Ether way I was willing to do whatever I had to.

Xander took 2oz of his bottle that night before bed and had half of his pear baby food.

Friday he woke up and wanted nothing to do with the bottle (frustration for me) he would how ever eat baby food so I stuck with that. Aunty Libby came with rice cereal, baby crackers and baby puffs ( she's pretty excited about all of this like nick & I) Xander LOVES the rice cereal.

Xander that day still wanted nothing to do with the bottle and I knew that he HAD to have is formula in order to get all of the calories he needs and to stay hydrated.

Friday night he took another 2oz before bed, still not enough of what he needs. Saturday we all packed up and headed to dylans football game.

Our cute 13 year old neighbor also babysitter snatched Xander up as soon as she arrived. She and Xander have a special connection and he smiles so much when she is around. She took his bottle and wouldn't you know it the little booger ate all 4oz's of his bottle for her!!

As the day went on Xander would have some bottle but not big amounts. We decided to get him some pedialite just to keep him hydrated. Of course he loves that and ate that without a fuss. Obviously he has a sweet tooth!

During the night Saturday he finally became so hunger that he ate 8oz's of his formula ( thank you god), but of course the next day all he would want is his baby food.

I have to admit that it's very frustrating knowing that he HAS to have his formula to help with the HIGH calorie diet he is on but will not always take it, but it's a learning process and I will stick to it until he gets it.

I think for now Xander will be tubeless during the day and I will place his NG tube in each night just to help make up for calories he lacks through out the day!

O how the year has flown!

It's so crazy on how fast 2011 has gone, it really feels like just yesterday it was February and here we are now in October 14 days away from Halloween.

Sooo not ready for the winter and the sicknesses that we will be avoiding. I wish there was a fast forward button at times and I would only use it during the cold months where it seems everyone is ALWAYS getting sick!

Well Xander as of October 2nd is now 8 months and is still weighing in at 11 pounds 14 oz. I think he may have a complex on gaining weight lol. He is doing so great after his Glenn and you can really tell the difference in him too!

We have been working with a therapist that comes in twice a month and helps with his mobility and feeding. Xander has shown no interest in a bottle what so ever so we have passed that and have gone straight to a tippy cup which he loves.. Our goal as of right now is to have his NG tube out by thanksgiving!!!

He has cut two teeth in the last week making him super cranky and has decided that sleep is not necessary at night ( huh maybe not for him but sure is for me lol) so now we get to experiment with essential oils to help calm him more at night and relax Jim just a bit more ( hmmm can't imagine on why he may be tense lol).

Holidays are coming up and things will be really different with them and what we are used to but it's all for a good reason. We must make sacrifices when others feel they do not.

Xander will not need to go back to his cardi doc until he is 1, so in other words PCMC we love you dearly but we better not see you until February!!

A SHOT IN THE ARM FOR XANDER!

I stole this from one of our heart buddies blog and its exactly what we want to say and feel! Thank You Mollie for reading my mind!

Well the flu season is among us....BOO!!! While some of you might find this "overboard" or "harsh" to us it is not. To us I would explain it maybe as harsh reality. For Xander's safety we are advising that if you plan on being around him AT ALL that you will get your flu shot. There is the assumption that if you get the flu shot you will get the flu, well guess what that is false. This is straight off of the CDC's website:

The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:

•Soreness, redness, or swelling where the shot was given
•Fever (low grade)
•Aches
•Nausea
If these problems occur, they begin soon after the shot and usually last 1 to 2 days. Almost all people who receive influenza vaccine have no serious problems from it.

The flu would be life threatening to Xander, and it wouldn't be a question of "he might be admitted" to the hospital if he got it, it is a guarantee that he would be admitted and it would be to the ICU, I don't think YOU would want to be the cause of that, would you?

Because of the risks if you don't have your flu shot you won't be allowed at our house this winter that may seem rude but I'd rather seem rude and avoid the hospital this winter than hold my feelings in and be at the hospital away from KayLynn, Dylan, Trever, Anthani and Nick for weeks because Xander caught the flu. Also if we do decide to attend family events such as Thanksgiving, Christmas Eve, Christmas, or New Years Eve parties outside of our house and we bring Xander, if you plan on holding him or getting close to him we will be asking if you got your flu shot and if you didn't you will just have to wait until the summer to cuddle with him. The more people who get the flu shot the less people who get the flu, crazy concept right? So really it isn't only for Xander's protection but for your own family's also. I know a lot of you have kids and babies in your homes so do it for them also! So come on all the cool kids are doing it and get a

SHOT IN THE ARM FOR Xander!! ♥

Best anniversary present EVER!!!

So I just have to say that today has been the most AMAZING day ever..

Xander had his post-op visit up at PCMC this morning and it also is mine and Nicks 10 year anniversary! We arrived at PCMC at 10:30am and started the visit out with a chest x-ray. we then headed over to cardiology to check in. Once in the room they had us turn off his oxygen to test how he would do on holding his oxygen up. Unfortunately Xander can only keep his sats in the 78-80 area which really they would like him to be at least 80-85 if not 90 area, so we will be staying on .25 oxygen for a bit longer but hey we have SOOOOOO come accustom to it that really we don't even notice it anymore. His EKG came back wonderfully and his chest x-ray showed no fluid anywhere YAY!!!!! Of course there is always that chance that some could come at a later time but we know the signs to watch for and know what to do if we feel things are going down that route. Needless to say Xander passed his post-op visit with flying colors besides weight gain. We are still sitting at 10 pounds 3.7 oz he has not gained anything since he had left the hospital.

Next we went to have our swallow test. You know how you just get that feeling in your tummy that you know they are going to or are not going to pass? Well I had that feeling today but that he would pass this time around and Drum roll please..................... he PASSED!!!!! Yep that is right our Mr. X totally passed his swallow test YAY... Now instead of having an NJ tube he now has a NG tube ( instead of going directly into the intestines it is now going in to his stomach FINALLY) I seriously can not think of a better anniversary present than that!!!

So for the next 24 hours we will be keeping his feeds at 27 calories at 27 ml and hour if after the 24 hours he has been able to tolerate it we will be moving to 27 calories at 54ml every 2 hours. Once at that dose for 48 hours we will then move to 27 calories at 90ml every 3 hours and watch him for another 24 hours to make sure all is good. If we can get to this amount and have no problems we are then able to start giving him food yes FOOD ( I am so excited about this ) by mouth.. HECK YEA!!!!

I cant even begin to tell you how ecstatic we are right now about this visit and everything, we definitely have such a fighter on our hands and we have been so blessed this far on everything he has gone through and will continue to have to go through but it just shows that no matter what he will fight to no end!!!

Now that surgery is over and we are all good life will possibly get back to normal in the normal way of what we have become accustom to YAY!!! Xander will be having his next visit on September 19th. Early learning will now be coming in each month possible each week to start working with Xander on his speech, occupational, and physical therapy so that we can get him where he should be at for his age.

Having a special need child is extremely rewarding and is very challenging at times but is these rewarding milestones that makes all the difference in the world and helps you know that what you are doing is working for your child. But really there is so much more to come and we all say BRING IT!!!