Seizures

Over the past week Drake's seizures have been much more frequent. We have been watching him diligently and searching for triggers, but nothing has presented itself. We thought we had this under control with his medications, but this is both frustrating and scary to see. I feel helpless to the situation. Luckily, we think it is attributed to further teething, and the seizure frequency has subsided the past two days...Yea! We have also started both Drake and Kennedy on a DHA supplement which another parent has informed us has helped with her son's seizures. 

We had a fun weekend at home with Uncle Matt and Papa visiting. Kennedy can proudly say both names now. Well, Uncle Matt sounds more like "Unhle Ma" but it's really cute. Drake shocked all of us by rolling over for the 1st time!!!!! I was working with him on tummy time, and he raised up farther than I expected and proceeded to push himself over. I grabbed my phone to document his momentous accomplishment, and he was literally smiling! So far, he has only rolled over the one time, but we know that he can do it so the bar has been raised. He came very close on Monday while he was working with his physical therapist; there are many more roll overs in his future! I know this little guy is full of great things to show us! 

Upon recently finding out that one of our NICU buddies has RSV, we have taken precautions to a whole new level! Brian's sister, Angie, sent us stroller covers called SafeAir filtration covers which are designed to protect from germs, pollution, allergens, and weather. It is quite possible that we may look crazy entering and exiting buildings, but that is a small price to pay for health and safety. 

Drake had his monthly synagis shot this morning to protect him from the dreaded RSV. This is one of those necessary evils. He is such a big brave boy when it comes to these appointments. He does cry (let's face it...shots hurt), but he calms down very quickly. The protection these shots provide is not a guarantee that he will not get RSV, but it is protection. With a weak and fragile immune system, Drake needs all the  extra protection available. 

Full of pride from his roll over!!! (Mom squealing with joy in the background!!!)

Caught in the act! Unpacking Drake's Pediasure.

While I was working with Drake, Kennedy decided to make a Pediasure tower! 

This is how we roll to the doctor during RSV/Flu season!

Coloring with crayons

Coloring on Nurse Lisa's iPad! Thank you, Lisa! 

Ready for bed!

Riding with mommy to pick up daddy's dry cleaning. 

Dear Hunting Season...

I think it is time to end for a while; the ducks want a break & I'm ready for my husband back! You can have him for the early mornings in the fall, but we are ready for him to be back with us full time (when he isn't at work) until then. 

Thank you for your understanding,
One Tired Mama

We enjoyed a fun but short weekend, and we squeezed in as much family time as possible. Daddy (Brian) went on one last hunting trip to Arkansas over the weekend with his hunting buddies. Since daddy was out of town and being at home  in isolation with two babies can get lonely, we packed up and headed to Gran & Poppy's. Kennedy is starting to have some really fun conversations with Daddy on FaceTime when he is out of town. They are absolutely precious to watch, and I am thankful that we have this technology available. 

We were able to enjoy some of the beautiful weather outside on Monday before the cold front hit today. Drake is overly sensitive to the bright sunlight, but he seemed happy to be outside in the shade. Cousin Jacob seemed to be in his element in the outdoors. Daddy has high hopes of Kennedy duck hunting with him in the future. From what I have seen, she has a long way to go in terms of acclimating to the great outdoors if she is going to join her daddy. At least we have a few years before she will be ready for any adventures of that nature. 

We all enjoy watching Kennedy and Jacob interacting. Even though they don't always get along, they are still fun to watch. The most incredible thing is their sweet and caring nature when it comes to Drake. They are both very aware of him and where he is in the house. Watching each of them check on him, rock him, and bring him toys is heart warming. 

I learned about a Facebook group called I Run for Michael. It is a group that matches runners with those with special needs. Their page states, "God gave me the gift of mobility. Others aren't as fortunate so I Run for Michael, who do YOU run for?" Drake was matched with his runner today! She is a college student and we look forward to getting to know her as she dedicates her runs to Drake. 

Time for a change...I have decided to write blog updates once each week instead of twice; therefore, I will be updating weekly on Tuesday evenings. But don't worry...If we have any exciting pictures or videos between blogs, I will post those on their Facebook page. 

Snuggling with Daddy!

Absolutely precious!!!

Napping on mommy & daddy's bed.

She thinks she is ready for video games :)

FaceTime with Daddy!

At little play time outside.

Sweet Cousin Jacob!

She stood like a statue on the porch. 

And then she stood like a statue in the yard.

Then she finally warmed up to her new environment! 

All worn out after his long day! 

Growth and Independence

It is always amazing to us when we reach moments where we can see the growth and changes in our sweet angels.  Drake has been showing so much improvement lately, and we are so excited.  His therapists are thrilled, as well.  Today when his therapist saw how he enjoys giggling and laughing with us, and when we stop, how he will nudge or give us signs that he wants us to do what we were in order to make him laugh and giggle, she encouraged us to do this as much as possible.   It warms our hearts, and it shows wonderful improvement in his skills and emotional growth.  

The Snowdrop program out of The U.K. has been such a help to our little man.  He is in the process right now of being re-evaluated for a new program of activities and exercises.  His first round has been very successful.  We are currently in contact with the director of the program through emails and video's and look forward to seeing how far  Drake will progress over the next few months.

Then there is Miss Kennedy!  What can I say--she is definitely exerting her independence, making her feelings known, and becoming a true example of "The Terrible Two's"!  Her little fits when she doesn't get her way seem to be very normal for her age and development.  She loves to explore and play.  She is also becoming more independent at nap and bedtime.  She has adjusted very well to going to bed and soothing herself to sleep with her thumb and her little lighted stuffed animal.  She is showing more and more signs of not needing to be rocked or cuddled at sleepy time.  She loves being on the move.  Kennedy has moved to the big tub at bathtime.   She enjoys playing so much that she doesn't like to get out.  The other night when I told her it was time to get out, she was very unhappy.  So, I just opened the drain and let her play until the water ran out.  When there was no more water in which to splash, I asked her if she was ready to get out.  She looked at the tub and said, "Bye, Bye" and came out of the water.

We continue to be so very careful of the people whom we invite into our home, because the flu and cold season is so rampant right now.  We are also careful with Kennedy and do not expose her to outsiders at this time.  Even their cousin, Jacob, does not go to any type of nursery right now; he stays with family in church, and when Meredith goes to MOPS or any meeting, Jacob stays with Gran or us.  We are doing everything possible to keep the children healthy.  We don't want to see them suffer congestion, fever or coughs.  

Kennedy is obsessed with finding Drake's belly button.

Love seeing Drake smile!

Helping Daddy cook dinner.

Daddy's magic fishing pole.

Changing You...

I read a quote today that states, "Sometimes God doesn't change your situation, because he is using your situation to change you." To say the very least...this hit home with me. I have been asked more than one time how I am able to stay so positive? Well, despite what it may look like to outsiders, I have quite a lot for which to be thankful in my life daily. Brian has said multiple times that we are better people because Drake is in our life...not that we were not good people before; he just makes us better. l can think back to the things that seemed important to us a few years ago and they are completely unimportant now. For one thing, we were very much a two person income family and had never thought we could survive on anything less; I guess we can...with some lifestyle changes :)

Yes, we have our challenges, and I will not deny that fact. Raising a child with special needs is a challenge; it is a joy, but don't get me wrong...it is not easy. Words like 'age appropriate' or 'developmental delay' are always in the mist, but we have chosen to ignore those to the best of our ability. Although, we have both ends of the NICU preemie spectrum in our home. We are told by the doctors that Kennedy is ahead of where she should be for her adjusted age, while at the same time being told Drake is preforming at a newborn to 3 month level. Oh they do say things like, "Drake is doing much better than we would have expected." Well, to us that sounds positive for both of our kiddos. 

Is it frustrating to have to physically go through a list of activities that must be done for your child multiple times each day? At times, yes. However, it is more frustrating that doctors don't see the potential that he has that we see daily. We take it as an attainable goal just to be able to blow them away at our next visit. When we can see the "shock" on their face, we hold in our excitement until we get to the car. Once the doors are closed, Lisa (Drake's nurse & I) literally do a squeal of joy and an in their face high-five! 

Speaking of impressive, our little man has been rocking it out of the park lately! He finished another entire bowl of oatmeal with his speech therapist today. I have been working with his physical therapist as well as his pediatrician to get him a stander. The paperwork is processing and we are excited with anticipation!!! We can't wait to see what he is able to do once he can really be up and in the mix of daily life. Being limited with his head/trunk control is frustrating for him, and we can see that. Brian and I were very pleased with how well he did with his new big boy car seat. He was getting far too big for his infant car seat, so we moved on up to the next size. Both Drake and Kennedy seem to love the change! 

Speaking of Kennedy, she has over 25 words that she says on her own...not to mention the fact that she will repeat EVERYTHING that we say, and I do mean ANYTHING and EVERYTHING! She is a mess! With all of the words that she can speak, it is even more amazing that she comprehends even more than she can verbalize!

All worn out!

Such a big girl...brushing her teeth all by herself!

Big girl car seat!

Big boy car seat! He did a great job holding his head up for 1/2 of our drive to Gran & Poppy's! 

Trying on mommy's hat! She has a little growing room :)

18 Month Well Check

I am excited to say that Drake has had a wonderful week! Both his speech therapist and physical therapist were extremely impressed with his hard work! On Thursday, Drake ate an entire bowl of oatmeal with his speech therapist. Our clever little boy was supposed to be working on his head control the other day, but he figured out that he could play music by slightly moving his head. Each time he finished listening to the music he would grin a giant grin! He repeated this cause and effect to his delight (and ours) for a good 10 minutes. Brian and Poppy have both commented this week that they have seen Drake smile more in the past few days than they ever have before. 

This morning Brian and I headed to the pediatrician with the babies for their 18 month well check. Their doctor was very pleased with both if their progress. Drake weighed in at 22# and measured 30.5" and Kennedy weighed in at 18.7# and 28.75". That puts Drake in the 15th% for baby boys his age and Kennedy is in the 3rd% for girls her age. The doctor began going over 15 month mile stones for Kennedy and quickly realized that she has reached all of those and the 18 month ones; she checked off several on the 20 month list, too. 

Pool therapy time!

All smiles at the table waiting on food.

Giggling with kisses from Gran!

Clever boy! Making music play using his head.

Poor baby! They received 2 follow-up shots at the doctor today. Good thing daddy was there to make her feel better. 

Listening to her boom box! 80s what?!!

Who me?

Enjoying a sucker with speech therapy! 

Kennedy gave him a kiss & Drake was clearly preparing for it in the bottom 2 pictures. 

When It's Cold Outside...

When it's cold outside, we try our best to stay in, stay warm & stay healthy. This has worked out for 3/4 of us lately. I came down with a stomach bug over the weekend, which left me down and out. Daddy had to step-in to full time baby duty and caring for me. Luckily, my illness only lasted for 24hrs and then I was back in action. We are thankful the babies did not come down with it, too. 

Now that the holidays are behind us, we are back to our regularly scheduled programing. Mon-Thurs at Gran & Poppy's with Nurse Lisa and Thurs-Mon at home. It isn't an ideal situation, but it is working for us. The best part is that with Brian working in Dallas we are all 4 together! 

Drake has started his week off on a great start! Both is physical therapist and his speech therapist have been really impressed with him! That makes this mama very proud! His PT is working with him on sitting up on his own using his hands for support. He has a long way to go, but this is a goal/milestone that is exciting to work toward! 

One of our NICU nurses came by Gran & Poppy's today for a visit. It was wonderful seeing her and catching up! I'm so very glad that she can see and witness Drake and Kennedy grow and develop. She was such a huge part of their little lives from the beginning. We are already looking forward to her next visit! 

Happy boy!

Wearing daddy's duck boots!

A pint sized chair! She loves it! It was actually given to Gran as a little girl by her Aunt...it's an antique!(shhh...don't tell Gran we said that)

Waving from her chair.

Working hard during Physical Therapy!

New Discoveries

The first few days of 2014 have taught us that Drake loves the sound of Harlee's new dog toy and that Kennedy is a little diva...I think we already knew that. Papa delivered some Christmas presents from Aunt Gigi & Uncle Chuck & both babies love the presents! 

Poor little Drake has been dealing with a bit of a tummy bug today. I hate for him to not be 100%, but I'm thankful he is not dealing with something much worse. Pedialyte seems to have done the trick! We'll try 24hrs on Pedialyte and then slowly wean back onto his regular diet of Pediasure. The names are very similar but the products are quite different. 

Kennedy is quite fond of the grilled cheese sandwich...she must get that from her daddy. She has moved up from bite size peices to strips. I think she feels like a big girl when she can hold the piece and take her own bites. Although she still manages to put too much in her mouth whether it is sandwich or Cheerios! Brian asked me where she gets that habit from (after biting off 1/4 of his own sandwich in one bit)...gee honey, I don't know where she gets it! 

Lately Drake has started to seem much more aware of his surroundings! We are all learning more ways to make him smile & we are enjoying every second of his sweet happy face! His dietitian is coming tomorrow and we can't wait to see how much he has grown! 

I love this smirk! 

Are you supposed to have the remote?

Eating her black eyed peas for good luck!

He passed out while sissy was eating dinner.

Thank you for the rocking Dino, aunt Gigi!

Best buds napping together!

The smile that melts our hearts!

Oh, my! Our little diva! Thanks for the skirt, aunt Gigi!

Looking outside for daddy!