Friday, November 29, 2013

A Happy Thanksgiving!

I have to admit that not being surrounded by extended family does make it not really feel like Thanksgiving. However, we have more than enough to be thankful for around here: all 4 of us are together, Drake is off of his oxygen, for the most part everyone is healthy (Drake has been suffering from a bit of a stomach bug, but is improving on Pedialyte), and Brian's grandmother sent us a wonderful Thanksgiving feast! Brian's dad, Papa, and his brother, Uncle Matt, have been here with us, too. 

Even Uncle Matt mentioned that it really didn't feel like Thanksgiving. I quickly reminded him that I was not wearing lounge wear and had even put on make-up; therefore, this was indeed a special occasion. Kennedy has been a big fan of both the ham and turkey that her daddy fried. Yes, I did say both and yes, there were only 4 adults here to eat. Needless to say we have a few leftovers. 

The best part of this Thanksgiving holiday has been that every day feels like a Saturday. I keep thinking I will need to pack for Dallas tomorrow, but we still have another day! Yes! More family time! 

      Celebrating with our little turkeys! 

   A couple of cutie pies! 

   A boy & his dog lounging and watching football! 

   Sucking his thumb all on his own!!!

    What do you do when you are given pajamas that zip up and don't allow access to your Mickey    button for a night feed? Why, your Uncle Aaron creates a custome Mickey Button Hole, of course! 

Tuesday, November 26, 2013

Quick Trip

We had a fun weekend at home with Brian and intended to stay home over the entire week, but Drake was due for his Synagis shots in Dallas this morning. It's better to be safe than sorry, so we drove into McKinney yesterday afternoon just in case freezing temperatures hit overnight. While we were there, Drake received his shots and had PT and Speech therapy. Not bad considering we were only gone a total of 24hrs. As always, I absolutely hate seeing him get shots (a necessary evil). He starts crying as soon as they wipe his legs with alcohol, and my heart sinks. 

Drake has started sucking on his hands, and even being able to hold his hands to his mouth on his own for short periods of time. He was using one hand to hold the other hand in place this week. It was the most remarkable sight! I even snapped a picture of him. One of my friends brought us a playhouse toy that her son has outgrown, and Kennedy was beyond excited when she saw it. She is having a great time exploring and discovering every new thing it can do. We adore seeing the smile and giggle she gives us when she discovers something new! Speaking of discovering something new...while we were in McKinney for Drake's appointments, Kennedy walked into the living room and found my parents lit Christmas Tree. My dad and I watched as she stood in awe...she was saying so many things, but we could only make out the word "Wow!" 

Once again, Thanksgiving is almost upon us, and we are settling into our safe haven of home. It is still not safe and we do not feel comfortable being around our extended families for the holidays...maybe next year. When it comes to Drake and Kennedy, we can never be too safe. Brian's brother will be here with us and his dad will be bringing us dressing, pie & all of the trimmings from Brian's grandma on Thanksgiving evening. We may not be cooking a Thanksgiving dinner, but Brian insist on frying his own turkey. I'm sure it will be amazing & I am really looking forward to it! 

Helping hold his hand to his mouth to suck his thumb! 

Miss Priss!

Cheesy grin!

Sweetie pie!

Ready to check the mail!

Obsessed with her newly discovered bracelet...the rim of a mason jar! 

My little snuggle bug!

Exploring the new playhouse toy!

Coming through the door!

Sucking his finger.

Happy to be home!

Sad that daddy walked out to go scouting for ducks :(

In awe of Gran & Poppy's tree.

Exhausted from his long day and double shots :(

Friday, November 22, 2013

On the Move!

Kennedy is now literally on the move all of the time. We have realized that it may be impossible to snap a photo of her that is not blurry for a while. Oh, well! She is always curious when someone comes to the house to work with Drake, and she desperately wants to be a part of everything. Today she joined Drake for his spinning portion of his Snowdrop program, and she was smiling and giggling the entire time! Speaking of giggling, Drake has started laughing lately. For now, it is a silent laugh, but it is definitely a laugh. We are eagerly awaiting the day that a sweet sound comes out when his face lights up with happiness. 

He is continuing to impress us with his developing strength. The amount of time that he is able to hold his head up has at the very least doubled. He used to only be able to do it for a few seconds at a time, but now he can do it for a full 30 seconds or more each time! Also, he is able to repeatedly and consecutively hold his head up for longer periods of time! In addition to that, he is becoming more aware and gaining more control over his hands. We absolutely LOVE seeing him learn how to move his own hands to his mouth. This is a big step and gives us lots of hope!
    Totally on the move...She is everywhere!   
     Daily exercises!

    Helping her brother with his spinning!

    All dressed up!

    Bath time for baby girl!

    Sucking his thumb without any help!



Tuesday, November 19, 2013

Baby Steps

Both babies are experiencing Baby Steps this week, and we are so thankful.  Drake's steps are causing some discomfort--he is cutting teeth.  Thank goodness for Tylenol and Motrin!  The doctor has told us that he has been slower in cutting these upper teeth because he is not able to hold onto and naw on toys/hands like Kennedy and Jacob. Even though this is making Drake very uncomfortable, we know it is a good step for our sweet boy.  Soon he will have the upper teeth to go along with those little bottom ones.

Then there is Kennedy--within a short week, she has truly taken off with her walking.  She is going everywhere!!  Her balance improves daily.  She is just so cute, especially since she is so petite.  We are having trouble finding shoes small enough for her that also are not slick on the bottom.  Babies who are this small usually aren't walking.  Her Daddy really enjoyed watching her improve and master this major milestone over the weekend.  

The holidays are fast approaching, and we regret that we cannot spend these with our entire extended family.  We are once again staying away, especially for Drake's health.  Maybe by next year he will have a stronger immune system.  For now, we will be content enjoying our holidays as a family unit on our own.  Drake has already had 3 bouts with congestion and had to go back on oxygen since Fall started.  We will do everything possible to keep our little man healthy.  That has to be our main goal.  The only people with whom we can spend any time must have a T-DAP and a flu shot.  Even then, we need to be sure the person/persons are not experiencing any symptoms of congestion or cough at all.  Even though Kennedy seems to have a much stronger immunity than her brother, we still have to make sure she is not exposed to something and carry it to Drake, accidentally.  

Lifting his head for short time to see the lights from the TV! Very impressive!!!

Working on motor skills while playing with beads 

Baby on the move!

She is loving walking :)

Just being cute!

She loves books!

Snuggling with Gran!

She is walking all over the house, but still checking to make sure we are watching. 

Friday, November 15, 2013

Shopping with Daddy!

Kennedy's immune system is much stronger than Drake's; therefore, she is not on as strict of a lockdown as Drake. She is eating up the opportunities to spend some quality time out in the "real world" with her daddy! I love seeing the two of them together! This gives me time to work with Drake on his therapies, and it is a wonderful opportunity for Kennedy to spend time with her daddy. Daddy said she has been very well behaved on both of her outings. 

Speaking of Drake...he amazed both of his home therapist today with his improvements! He turned himself from his side to his tummy and raised his head up for several seconds. He also grabbed his beads (marti gras beads used for therapy) for almost 2 minutes and pulled back on them during repeated games of tug-of-war with me. 

On Thursday we had a meeting about Drake's annual qualification for MDCP (Medically Dependent Children's Program - this is what allows Drake to have At-Home Nursing). We enjoyed meeting with his case worker and the state nurse, and they liked seeing how much Drake has changed in the passed year, too. Ideally we would love for Drake to improve so much that he will no longer qualify for the program; however, in the mean time, we are forever grateful to have the help which this program provides to our family. 

Let's do this, daddy! 

Let me see...I think we got everything on Mommy's list.

Sweet baby boy!

Some things never change :) One year ago we were able to finally bring our sweet baby boy home from the hospital, and our family was complete! 

Our sweet girl sleeps on her tummy now...every night :)

Such a hard worker each and every day! 

Here bubba, you can play with this. 

She is always trying to help! She even tossed toys over her play-yard fence to him today during his therapies. She is such a sweetie! 

Tuesday, November 12, 2013

Walking!!! Celebrating!!! Testing...

The weekend and first of this week have been very busy.  Yes, we did manage a few nights at home in Tyler over the weekend.  However, we came back on Sunday afternoon because of cousin Jacob's Birthday Party!  Saturday was his 1st Birthday.  He had one party on Saturday, but Poppy and Gran were out of town, and we were coming back on Sunday to be with them, so we had a second party then.  Our immediate family, including Jamie's parents, and our nurse, Lisa and her husband, Ky, celebrated with dinner, gifts and, of course, cake!  Meredith also made sure we celebrated Ky's birthday and Jamie's Dad's, as well.  Needless to say, Jacob had a great time.  He has figured out this unwrapping of gifts quite well.

Just before the party ended, Kennedy turned loose, had a tv control in her hand, stood up and walked to take it to Poppy!  He stepped back and she kept going.  She has been taking a few more steps each day!  She truly "Toddles" but she is getting this down very quickly! She will be running in no time! 

Monday brought a Swallow Study for Drake.  Lisa and I had him down at Medical City by 9:30 that morning for his test.  This barium study required him taking the barium, then they tested various consistencies for him to swallow.  They started with thin whole milk consistency and ended with a thick honey consistency.  Drake did the best with the one that was more like nectar.  The test showed that he is aspirating, meaning he has some of the liquid going down his windpipe; therefore, a small amount of liquid is going into the lungs.  We definitely don't need this, as it could cause pneumonia.  With his easy tendency to develop congestion, we don't need anything that could cause more infection.  So, he is now to not take anything by mouth for 3 months and then do another study.  The only times when he can take anything by mouth is when his speech therapist is here and working with him.  We certainly hope this will work and we can go back to feeds by mouth soon. 

We have several other appointments this week, and will go back to Tyler early on Thursday.  Life is never dull around here.  

Walking to Poppy at Jacob's party! 

She is definitely "on the move!"

Gran & Kennedy

The Birthday Boy, Jacob! 

Drake LOVED his sucker in Speech Therapy! 

He even took a little nectar consistency from the bottle! 

All worn out! 

Friday, November 8, 2013

The Milk Battles

For weeks now, Kennedy and I have been battling it out over milk. Specifically drinking it from a sippy cup rather than a bottle. Sure it would be nice to pack up all of the bottles and remove them from the house leaving her no choice; however, that is not possible since we (along with speech therapy) are still working with Drake on bottles. She loves her sippy long as they are filled with water. When I fill her sippy cup with milk, she takes one sip and then opens her mouth letting all of the milk run out. Perhaps she prefers her milk warmed...nope. Even warmed milk in her sippy cup brings the same outcome. Cue daddy to the rescue! Really?! Surely, the end result would be the same regardless of which caregiver was attempting the switch. I mean at this point I have tried countless times, Gran has tried, Poppy has tried, even Aunt Mere has tried...we all failed. Last night Brian gave her a sippy cup filled with cold milk. I literally said, "Good luck with that!" in a sarcastic tone when only seconds later, to my astonishment she was actually drinking the milk. Nice work, daddy! 

Drake has been busy with his therapies, and today he had two along with his dietitian. As you can see in pictures, he is continuing to grow and put on weight nicely. We are SO proud of him! It used to be a rare occurrence that he could lift his head, and now through his fierce determination, it is a daily affair. It has been 5 months since we first saw his little smile, and it still tickles my heart every time I see it. 

"Thank you for the milk, daddy!"

Our little drummer boy!

Testing out Drake's spinning chair.

Sweet smile!