Sorry I haven't posted in a few weeks. We have been traveling and enjoying the rest of winter. Andrew is doing really well. He starts back with PT and OT next week. We have been on a little break from therapy while he is healing. He is so close to walking and I think therapy will give him the strength to let go of our hands and walk on his own. I hope I will be able to update this soon with a video of him walking.

We are going to Aspen to enjoy the rest of the ski season.  I will post some pictures of our trip when we get back. Until then I hope everyone has a great March!

Below is a picture from our trip to Leadville, Colorado. It is the highest incorporated city in the USA. It is 10,152 feet elevation above sea level.  It is truly God's Country. The picture doesn't even do it justice.

Happy Valentine's Day! 

I just wanted to update that Andrew is doing great. All the antibiotics are done and PICC line removed. He is walking along the furniture and so close to walking on his own! 

Thank you so much all for the emails! I try to answer back whenever I can. I'm making a book for Andrew when he is older and I always save all the emails so I can put them in there.  He will be able to see what a sweet fan club he has. 

Here are some pics we took over the weekend

Hi!

I hope everyone is having a good New Year so far! I can't believe January is pretty much over. My parents always told me time flies when you have kids and they were right. It definitely makes you slow down and be grateful. I can't believe my little bean is going to be two years old in a few months. Speaking of he has been doing really well. I think we get to take the PICC line out next week! So excited for this.  It is a lot of maintenance and it is hard for him to get around with all the equipment. Before his spinal surgery he could carry most of it in a backpack but now he is a little too sore to carry all that weight. I will post a pic below of some of his antibiotics. He has been such a great sport about all of it. My husband and I just have to trail after him holding the equipment so he can move around. He is back to crawling at warped speed and is now working on standing and walking again. The docs told us it could take 6 months to get back to this point but they don't realize who they are dealing with...Andrew doesn't let a major back surgery get in his way! My little guy teaches me so much about courage and strength everyday. As I mentioned before he had eye surgery a week before everything happened with his back. Unfortunately because of all the neurological stuff with his spine his eye surgery was made useless. So we are back to wearing glasses and in June possibly another eye surgery. The doc thinks the 2nd surgery will definitely do the trick.

Everything else has been going really well. We were trying to lay low after all his hospitalizations and surgery but the weather has been too beautiful. We have been having 65 degree days. Not the type of weather I thought we would be having in Colorado. The nice thing is Vail is just a short drive so we still get to ski. We went to Boulder last weekend and it is beautiful! I definitely recommend going there for anyone visiting Colorado.

I hope everyone is having a good week!

Being silly. He is in that stage of unbuttoning all of his outfits. 

Out to eat 

Already sitting up again

Some of his antibiotics that he has to carry around 

Hi!

I'm so sorry it has taken me so long to update this. Thank you so much for all the emails inquiring about how Andrew is doing. It has been such an insanely busy month. It was mostly spent in the hospital but even there it was so hectic. Definitely different then the NICU where Andrew mostly slept. Now I'm trying to keep a toddler entertained in a very small room while he is hooked up to many wires. I'm happy to report Andrew had his surgery last Friday so we are on the other side of it and he is healing. Very sore but healing. The surgery was intense. It was eight very long stressful hours. The hospital was great on updating us each hour to let us know how he was doing. Having your child undergo a serious surgery like this is the most gut wrenching thing. You would give anything to be able trade places with them and you feel like you have no control. The other surgeries he has had seem like nothing now. Thankfully my husband is my rock. He keeps me afloat and is strong for both of us. I know as Andrew gets older and things like this come up I will have to put on a very brave face for him so he doesn't get scared. Anyway on the bright side we are all home and enjoying every second of it. We also celebrated a very late Christmas since we were in the hospital over the holidays. I love Christmas so I just looked at the positive and we got to have an extended Christmas this year. I also had my family here which was beyond helpful.

I hope everyone had a great holiday and are having a great New Year so far! 

 Finally getting home to celebrate the holidays! 

His new scar. What a tough little guy! 

Hanging with Dad in the hospital 

At home recovering and being a couch potato 

Hi,

I hope everyone is having a great December so far!

I wanted to update this because Andrew is in the hospital. Not for the surgeries he had last week. His eyes look perfect. In fact we came up to Children's last Monday to get his eyes and circumcision checked. Both looked good but I voiced a concern to the Urologist about Andrew's original surgery site  (the one I had when I was pregnant with him). The site looked a little red and Andrew felt warm. So the Doc sent Andrew to get an Ultrasound. We were immediately admitted into the hospital after they saw the results. He has an infection near his spinal cord. They think because the original surgery had to be done in such a hurry there was a pocket left near his spinal cord that unfortunately an infection found its way to. On Tuesday we had an MRI and then Wednesday he had surgery to help ease some of the pressure from the infection. They opened his scar up and are just leaving it open until we have a second surgery in January. Needless to say it looks a little gruesome. They also put a PICC line into his arm so we can do continuous antibiotics. Because his veins were so beat up from the NICU it is really hard for him to hold an IV so the PICC line has been really helpful. To get an IV into him it takes so many sticks and watching him go through that is heart wrenching.

Our sweet boy looking out his hospital window

Still smiling right after surgery

The second surgery in January is 12 hours long. They are going to literally rebuild his scar area,  going from the spine and up to the skin. At the end a plastic surgeon will come in and redo his skin around the scar. My little guy in surgery that long is going to be very scary.

With this being a children's hospital they really try to make Christmas time special. They have carolers in the hall everyday, Santa bringing presents ect...It still just has a depressing vibe though. Nobody wants to be here around the holidays. Andrew has no clue what time of the year it is but I feel for the older kids . Of course after what happened in Connecticut none of this matters. Who cares what time of the year it is when we still get to hug our kids close. It is just such an unfathomable tragedy.

Sorry this isn't very upbeat but I really want this blog to be accurate. I think having a baby like Andrew there are going to be ups and downs. Luckily for us the ups are so incredible it makes it easier to deal with the downs.

Christmas pics we took the Saturday before we were re-admitted into the hospital

Surgery went well!

Hi,

I am so happy to write this on the other side of Andrew's surgery. He had it on Tuesday and everything went really well. His eyes look so much better. We aren't even supposed to see full results for 6 weeks but they look 100% better!  He also got circumcised. They couldn't do it when he was born because of all the problems he was having. Even though both were routine surgeries I was so nervous. However,  he did fantastic. They are supposed to be outpatient procedures but with Andrew's breathing issues in the past we ended up staying the night. He was intibated during the surgeries and put completely under. When he woke back up he was fine but when he would take a nap he was de-sating.  All is good now though and we are home. He is such a little rockstar. He handled everything so well. I know how brave he is but during these medical things I'm reminded.

Aside from the surgery everything else is great. This is my absolute favorite time of the year. I LOVE Christmas! I love the holiday music, the decorations, traditions, family time ect...We go crazy decorating the house and baking. Having a child makes it even more exciting. Andrew is still a little too young to really know what is going on but it is still so much fun. My family starts getting here on December 20th so I'm really looking forward to that. I hope everyone else is having a great December! I will try to update this but I know things are going to be busy over the next couple weeks. I will definitely post Christmas morning pictures. Thank you again for reading this. I got so many sweet emails wishing Andrew luck with his surgery. It means so much that people take time out of their busy day to see what is going on in our lives.

Have a great holiday!

Love,

Kelly

     1st pics with Santa

So close to walking!

 Getting hugs from Dad before surgery

 Smiling like a little champ after surgery

Snuggling with Dad in the hospital 

Hi,

We are back from our trip. It was so much fun! Andrew is still a good flyer. I wasn't sure as he got older if he would get a little antsy on the plane but he did fine. As soon as we sit down he sleeps and then wakes up when we land. We have a trip to Hawaii in May and I'm really hoping he is still a sleeper on the plane. It is an 8 hr plane ride so wish me luck...haha.

California 

It was a little too cold to actually go in the ocean but it was still so nice to eat at restaurants along the beach. There is nothing that compares to the smell of salt water and I automatically feel so relaxed as soon as I feel the ocean breeze.

Everything has been going really well. We have his surgery in December. I'm nervous but happy to get his eyes fixed. He is having his surgery at the Children's Hospital in Denver. It is a top ranked hospital and I feel so blessed we live so close to it. The doctors there are amazing. I will update this as soon as the surgery is done. We also had spina bifida clinic recently and he was a little rock star. They said he looks terrific. Those appointments always make us nervous but we were so happy to hear everything is okay.

 At Spina Bifida Clinic showing the docs how he can walk! 

I hope everyone has a fantastic Thanksgiving! We have so much to be thankful for this year!