Sofia's Eventful Year (about a month late)

Mental note to self- Don't rehash memories of time in NICU or look at pictures it will only make you cry thinking about how hard it was to see my baby hooked up to cords and stuff. So that being said..... I never realized how extremely grateful I am for the family and friends that I have.  When Sofia was born I knew that people would be supportive and we would feel love but not to the extent that we have felt.  I am also grateful for my amazing husband who  when things seemed to be going wrong he held it together for us.

I'm also grateful for Aidan, who had every right to act up when Jason and I spent 2 weeks straight with Sofia on and off in NICU but didn't.  Who now hugs, cuddles, kisses, and calms her.  He is the best brother she could have ever been blessed with. 

 

 

 

To my mom who was/is my rock from the start.  She is the caregiver when we are at work and is a huge part of Sofia's therapy sessions.  I love her and appreciate her even though I don't say it enough.  She would do anything for these two and more so for Sofia.  They are so lucky to have a grandmother like her. 

 

 Grandpa time!!!

 

My dad, brother, and sister are also Sofia's biggest fans.  They can't stop cuddling and kissing on this girl but can you blame them?  She sure is adorable. 

 

 

I see so many posts on Facebook of other children who have families who absolutely adore their children with DS and I think to myself that I would have never had the opportunity to see these pictures and to appreciate my life the way it is now without this surprise gift.  She has had a great year and it will only get better at the end of March.  SHE GETS HER FEEDING TUBE OUT!!!!

She will feel so free and now we can get out the belly shirts, hehe, just kidding.  So stay tuned because the next time I blog will be when she is tube free, unless she decides to walk before then (crossing fingers). 

 

Baby boot camp update!!!

Sofia with her 2nd cousin Vanessa Flores. Sofia was not happy with the 2 sessions she has been through this weekend. What a trooper.

4th of July Celebration

Every year my Aunt Mary has a huge bash at her house for the 4th. Well wouldn't you know it,we are under a firework ban because of the drought that we have going on. We were supposed to set off a ridiculous amount of fireworks but couldn't. Instead we had more time to socialize with family who only get to visit at this time of year. It was so much nicer. Sofia was of course on display and everyone commented on how extremely cute she is, I was thinking "of course she is".
I know family who know of Sofia's story were curious but you could tell they sincerely thought she was too cute for words.

I have a cousin who just months before Sofia was born found out his son Jesiah, had Autism. We talked a bit about his fears for his son and how he came to terms only to have those fears come back after hearing about Sofia. He was incredibly encouraging and said anytime I wanted or needed to talk to give him a call. I love my family. I don't know what I would do without them.

Of course,I wanted to take tons of pictures but because of parent brain I grabbed the most important items leaving the house first (the kids) and left the camera at home. BUMMER!!

One out of town visitor that I wanted to get a picture of was my cousin, Vanessa Flores. She is an OT and was so helpful the last two days. We don't have PT yet and she gave us great exercises to do with Sofia to get her core stronger. She told Sofia that's she was going to go through baby boot camp. I thought it was hilarious, because Sofia just looked at her like she was crazy.

I LOVE MY FAMILY!!!! I can't say enough how lucky I am to have family who surround us with love and support. The best 4th of July celebration yet.

Baby Food!!!!

Today was the first time Sofia had baby food.  Her reaction?   Well, her face said it all she actually liked it.  However, we had a little problem or should I say a big brother problem.  We have only one highchair in our house and today he has claimed it.  He cried like we just gave away all of his toys.  Man oh man, that little boy cried for a good 1/2 hour.  All the while I kept feeding Sofia and telling Aidan that he was so nice to let Sofia borrow his chair to eat some baby food.  Ha, it didn't work.  Well, Sofia and I decided to give in and sit in her swing to eat the rest of her food.  I was so proud and excited for her. 

 

FREEDOM!!!

We can officially say good-bye to any oxygen tanks and apnea monitors in our house.  Thursday Sofia went to see her Pulmonologist and he gave her the thumbs up and ordered her oxygen and monitor be removed.  It was like a sad, long chapter in her life has been closed and finished.  She hadn't been using the oxygen since April when her feeding tube was placed and the monitor hasn't been used since May, when she had a good download.  So naturally I thought they would be removed but it just seemed as though we might get bad news to go along with her checkup.   We have been in the hospital twice since Sofia was born (that's including her NICU stay) and I don't want to go back anytime soon.  I should be thankful that we haven't been there any more than we have like so many other kiddos.  Well, we are still working on getting that feeding tube out and it may take awhile but that is ok, we will deal.

A-OK

So we went to get Sofia's ouchie looked at and the nurse and doctor said we have been doing a good job taking care of it. That makes us feel good. Instead of putting acid on the skin they decided to just give us pads to put in between her skin and the button. This padding has antibiotics on it so it should help with redness and drainage we have been seeing. We shall see.

One doctor appointment down only about 3 more appointments (scheduled) to go this summer.

Ouch!

So Sofia has developed a minor ouchie associated with her feeding tube. When anyone gets a feeding tube they end up developing tissue that turns out of the opening of the tube (?). Well when that happens it is painful and sometimes parents wait too long and it can get really bad (believe me when I say REALLY BAD because we have seen the pictures). Well luckily for us we have caught it at a point that it is just starting to do that so we are taking Sofia in on Friday to essentially get the tissue burned off. Not looking forward to that and thank goodness over our short stays in the hospital I have developed a thick skin to things they do to her, just as long as they aren't doing too many painful things at one time.