Happy Summer!

It's been many months since I have posted on our blog. Combination of being extremely busy and a combination of wanting to block certain things out :) .

There has been lots going on since May when I was last on here. Both kids had birthdays (Andon had an awesome birthday party at school for his forth and we celebrated at home for Noelle's 2nd birthday) and they both seem to be growing up so quickly right before our eyes.

I'll do Andon's update first because he is essentially the quick one! :) We enrolled Andon in Dynamic Life Christian School 3 days per week for the half day program and he is LOVING IT! He loves school days and is loving the field trips right now! He graduated from the preschool program and will join the Pre-K Classroom in the fall. He is so excited. This school is awesome!! They have an indoor play area with a moonbounce as well as a game room with skeeball, air hockey, ping pong tables and old style pac-man! Not to mention the great woman (and a few men) that run the school. It is a very good atmosphere for him to be in. I took Andon for his 4 year old check up and he is a very healthy boy and still running very tall on the scale! Poor kiddo had to get 3 shots and thought it was the end of the world...but he was super brave and actually did pretty well. We enrolled him in Soccer for the fall with the same team he was on! He is very excited to be playing soccer with his friends again!! For Andon's forth birthday he got some new Thomas Trains (shocker) and we took him to a Nats game (10 rows from the field) where the giveaway was a cute Nats kids backpack! YAY!It was hot but he still talks about it. Ironically enough, he doesn't really talk about the game but how cool it was to ride the Metro! haha!


Noelle on the other hand, probably has the longest update of all of us. It is still quite the roller coaster with this girl. She ended up having surgery at UVA on June 4th. The surgery was done successfully which is very exciting but UVA left such a bad taste in my mouth, I don't think you could pay me to go back to that place. I really think that if you get used to a certain health system...then you should do your best to stick with that system. Noelle was a planned PICU (Pediatric Intensive Care Unit) admission after surgery....yet they didn't have half of her medications or formula. It's not like they didn't know about it. Everything was in the Pre-Op report. The PICU nurse tried to put her ear drops in her eyes....thank God I was in the room to stop her and make her go back and check the chart! It was an overall disaster and I was really disappointed that such a top rated hospital sucked so badly! Never again...

For Noelle's 2nd birthday, we ordered her a ton of DVD's of a program called "Signing Time." The speech therapist and her doctors think the lack of verbal skills could be due to mixture of poor motor planning and poor breath support. There are no answers to when she might start speaking...so we are just going forward with the sign language. Noelle loves it and is really getting good at communicating with us. So, Andon and myself are getting pretty good at figuring out what shes saying. We all have Signing Time scheduled into our day to practice and learn some more signs.

We are so blessed to have VA Medicaid. For people that reach the lifetime maximum so quickly....Medicaid has been a miracle. They now pay for diapers for Noelle (which is a huge help) and we recently ordered some new items for Noelle. It's time for new braces and shoes. She is outgrowing the old ones. But in addition, her left foot seems to still externally over-rotate. So, they are taking the braces up to her hips to hopefully correct the issue. Noelle is able to pull herself up to stand and enjoys standing supported. However, still not taking steps or even attempting to let go. She has recently started to cruise the couch and go side-to side and this is pretty huge. Unfortunately, the problem with walking is that her gait is so unsteady (especially with the one foot turned out so badly) and her respiratory status may not have her up and walking anytime soon...so we went ahead and ordered her first wheelchair! We have spent the last year tearing up strollers with the huge oxygen tanks...so it was time to get something more durable and easy for Noelle to get around in. We went on Thursday to see if she would be able to maneuver a similar chair around the store before we ordered hers. It was a HUGE success. The salesman showed her how to move the wheels and she was off!!! She wheeled around that store for over 30 minutes and LOVED IT! The only problem with the chair is that her left side has always been the weaker side, so we kept having to correct her steering. The sad part is going to be our walls once she gets this chair home. But who cares....she'll finally have some freedom and be able to keep up with her brother. I'm super excited that she is going to be able to get around on her own. And perfect timing before she goes to school....

Thats right, Noelle will be enrolled in Special Education Preschool starting in the fall two days per week. We got really lucky, because during this time...she will be able to keep her home services (PT/OT/Speech). Then, during the winter months, she'll stay home and go back to school in the spring. When Noelle turns 3 next year, she'll lose all of her home services and go to school full time. That means both my babies will be going to school full time next fall. We just won't talk about that right now...

Developmentally, Noelle is doing fantastic. She is picking up sign language and is really starting to communicate. She is measuring on the level of an 11-12 month old which is a huge leap. She has had a ton of assessments lately due to the IEP process, but everyone loves her smiley and spunky personality. Noelle really knows what she wants and is not afraid to let everyone around her know. She is showing some great 2 year old behaviors, such as hitting, kicking, biting. I remember when Andon did those things I was mortified....however, with Noelle...she's finally doing something AGE APPROPRIATE. That is definitely something to celebrate.

Medically, not so exciting. She recently had blood work and a chest xray because her lungs just don't seem to be getting better like we all had hoped they would by now. Many of her doctors keep asking why she is still on oxygen at age 2....well...because she needs it. I asked the pulmonologist why all of her doctors all of the sudden wanted to know about the oxygen needs. Apparently, between the ages of birth and 2 the lungs do the most amount of growing. They still grow after 2 but not as significantly. So, typically if a kid is going to come off oxygen or come close...it should be before or around their 2nd birthday. Of course....thats the typical kid...not Noelle. She is still on a lot of oxygen. Occasionally, I still put her on high flow at night. She still kind of roller coasters with her respiratory status. I have come to know that she has this specific cough when she needs more flow. So, I'm really starting to wonder if its an issue of flow and not needing the oxygen specifically. Her oxygen saturations are typically wonderful. However, there are many days where she requires more nebs (because she's working too hard to wheezing or doing this weird coughing thing), but not because her sats are low.

It is very odd. Her most recent chest xray showed some increase of the "nasty spots" from her BPD (chronic lung disease). It also showed that the left atrium of her heart was enlarged. The pulmonologist called her cardiologist and they are not too concerned and are choosing not to do anything about it, but will simply "keep an eye on it." Still, the lung disease is far from getting better and is essentially getting worse. This explains the roller coaster respiratory status, but no one has a clue why. I guess, most kids like Noelle are trached. So most of her care, I guess, is basically trial and error. I haven't heard of too many preemies like her that are still on oxygen at age 2...that aren't trached anyway.

Other than all that stuff, we are doing well. Noelle is scheduled for a 24 hour EEG at Children's in DC on August 11th to check for possible seizures. We'll see what that brings. I'm not stressing over it. The seizures are either there or ... not! In September, Noelle and I will be going back down to UVA for a 2 week intensive Feeding Clinic, to try and teach her how to eat. The goal is to significantly decrease the tube feedings and make her more dependent on eating by mouth.

As for me and Ross, we're still here. I find myself frustrated a lot trying to juggle the kids, working, medical issues, insurance remittance (because we still apparently owe Fairfax Hospital over 100k from the NICU stay), doctors appointments and trying to take some care of myself as well. Raising a special needs kid is tough....and the issues seem to never end. I wouldn't change anything though. Our family is our family. God has blessed us with Noelle this way for a reason and we are all thankful!

During this past spring, we booked our first family vacation since Noelle was born and it is getting closer! We are getting super excited and we still don't leave for another 3 months! We will be going down to the Outer Banks for 2 weeks in October. We rented a huge house (with an elevator...thank goodness!) and will be able to enjoy our private pool, hot tub and finally be able to just relax with our family!!! We need a vacation soooooo badly! I could not be more excited! Not to mention, one of my high school friends is getting married down there while we are there! So, we are wishing the summer away! I've heard that OBX is great that time of year and the beaches are practically empty! We can't wait! I'm so sick of strange people just staring at Noelle or "Awwwww'ing" at her. On the Forth of July I was holding Noelle while Andon was on the moonbounce and some strange man had the nerve to ask me to remove my kid-leash from Noelle. I just stared at him and then looked down at the huge tank coming out the the stroller and he finally said "oh...sorry!" Some people are just idiots and don't get it.

Anyways, thats it from here. Sorry it took so long to update. We're still here and all doing well. I'm going to make a better effort to be on here more often and update everyone more frequently. Hope everyone is doing great!

xoxo,

Stacie :)