Tuesday, July 28, 2015

Big Strides

Earlier today I posted a recent video of Drake in his gait trainer. He has really started making great strides with his progress lately! So much so that his therapist had to change his goals! We are so very proud of him! I love seeing him have the freedom of mobility and control that all 3 year olds deserve! 

Kennedy has just been enjoying being a kid and loving the summer! She is always excited to go swimming at our friends' house, and we love how well she has been doing with her swimming and comfort level in the water. She was also excited to have Drake outside to play in the water with her, too! It is difficult to have Drake outside in the summer heat because his trach ties are like wearing a scarf, and who wants to wear a scarf in 100* heat! 

I had a successful sono on Monday afternoon! Everything is looking good and our baby boy is not letting his 2 vessel umbilical cord effect him. He is clearly getting the nutrients he needs, and measuring 6 days ahead of schedule! Estimated 3#4oz! Ironically, that's what Drake & Kennedy's combined weight was a birth! 

We enjoyed a nice weekend here at home & in our neighborhood. If we had not had to get new tires for my car, we probably could have avoided town all together. We celebrated Papa finishing his radiation treatments in Houston at MD Anderson! What a fun and exciting celebration! He moved into our neighborhood two months ago, but he has been doing weekly treatments in Houston since his move. Now he can really enjoy his new lake life & living close to his grand-babies! 

Playing outside in the water!


Summer fun!

Sweet boys! If Drake is on the floor mat, Riot is right next to him!

Busy making phone calls...she pretends to call everyone...including Drake's nurses.

Sweet baby boy! It's still hard to believe that I've made it to the 3rd trimester!

Tuesday, July 21, 2015

Slow & Steady

Since Drake was released from the PICU back in May, we have slowly been working up on his time and endurance off of the vent. We are overjoyed that he is now off the vent during the day while he is awake, and only on his vent while he is sleeping. Today his Pulmonologist was pleased to see his progress, too! He said that his vent settings are minimal and can not be weaned any further. We will continue with what we have been doing and attempt to wean some of the medications in his breathing treatments. If we are feeling brave, we can also try spacing out his breathing treatments a little. There is a fine line between feeling brave and pushing him a little and feeling scared and apprehensive because of the major setbacks we have had in the past. We will continue to walk that fine line and do our best to make what we believe will be the best decisions for Drake. 

We visited the dentist this week and both Drake & Kennedy did really well! I'm so pleased with how accommodating Dr Boozer's office is with Drake. They even did his teeth cleaning in his chair so that he would feel more comfortable. Kennedy's favorite part was the fish tank in the waiting room. She quickly spotted "Nemo" and "Nemo's daddy." She also informed the dental hygienist that they did not have "Dory." Clearly she is a big fan of Finding Nemo. Both kiddos received fun new toothbrushes, and I think it is safe to say they will be ready to go back when it's time for another appointment. 

Today I had planned to meet up with some friends for a lunch following vent clinic. Unfortunately, vent clinic was CRAZY busy today and we did not get out of there until much later than expected. While I was disappointed to have missed out on visiting and catching up with old friends, I was happy to have been able to spend a little time with Mimi, Poppy, Aunt Jamie, Uncle Mikey & baby Chase before we headed home. 

We are still on the lookout for a new night nurse 3 nights each week. It is not easy finding the right nurse who will be a good fit working with Drake, and who we will feel comfortable with in our home. It always takes me the longest before I feel at ease enough to actually get sleep when we are dealing with a new nurse. It's difficult letting go of control and allowing someone new to care for Drake. We will continue to search and pray that our agency is able to find a perfect fit before our new baby boy arrives. 

We are hoping to have a quiet week and continue with our slow and steady progress moving forward. 

Our little goofballs! 

We all love making Drake laugh!

Cutest little tiger!

Kennedy was so excited to pick out her baby doll at the store!

Drake's therapist made him a head strap for when he needs a little extra support with his head control. This allows him to concentrate on more important things, like pushing the button on his tray. 

Our trip to the dentist!

Getting serious about brushing!

Looking out the window at vent clinic

Silly boy in a high chair at Mimi & Poppy's! Impressive head control! 

Evening walk

Her protector is always close by

Tuesday, July 14, 2015

The Other Side

We're working on getting Drake set up with vision therapy. This will be done through the school system. Since Drake has now turned 3 years old, all of the formal processes begin. This week I experienced my first ARD (Admission, Review, and Dismissal) Committee meeting as a parent. Sure I have been through TONS of these as a teacher, but this was my first time to be on the other side of the table. For those not familiar with ARD meetings, they are a part of the Special Education process and an IEP (Individual Education Plan) is established to best meet the individual student's needs. For the time being, we have everything set in place. He will begin vision therapy next week and a full committee will do an evaluation within the next 45 school days. Following that, we will reconvene for another ARD within 30 days. At this time, we are only interested in vision therapy and he will not be attending school. He is simply too medically fragile for a school setting. 

I'm currently 27wks pregnant with our baby boy. Looking back at my last pregnancy and NICU stay, it is crazy to realize I had held Kennedy in my arms at this point! We were also desperately praying for Drake's kidneys to start working again. As excited as we are to have him and hold him, we will gladly wait until his due date...which will be here before we know it! 

We have been loving our evening summer walks! It's so nice having time after dinner to take a walk, relax and still make it home before Kennedy needs to be in bed. We are really going to miss this when it gets cold and dark early. Thank goodness for the seasons! 

Enjoying our summer evening walks!

Neighborhood playground with these two cuties!


Big Girl swing!

Testing out the new head wrap his OT made for him! 


All smiles!

Kennedy helped our friend, Eleni, paint chairs while I attended Drake's ARD. Thank you for the fun art project! She loved it & told daddy all about it after work!

We have all been enjoying these summer evenings!

After we picked up Riot from his surgery today. He was ready to get home! Freshly neutered and microchipped. 

Flash back to the NICU...holding my sweet Kennedy at this same point in my pregnancy!

Tuesday, July 7, 2015

Uncharted Territory!

I'm officially into my 26th week of pregnancy! At this point with Drake and Kennedy, we were scared to death in the NICU in Dallas taking our days minute by minute and blood gas by blood gas. So far, so good and we pray this continues! We don't want to meet this little guy until he is fully baked & ready to come home! Every Sunday marks another week in this pregnancy and we celebrate each one. 

Drake's new occupational therapist has been working with him on cause and effect. He has been using large buttons that play music to get the effect that he wants...being moved around the room in his stander. He has really caught on and been doing so well. Today she switched him up and gave him a much smaller button that does not make any noise. We kept the effect the same...he pushes the button and he gets to move around. I was honestly shocked at how quickly he caught on with the new button. Without the music or sound, I really thought it was going to be difficult and take lots of practice. Seeing him reach out on his own to make contact with the button was beyond my dreams, and I'm sure my pleasure showed through my beaming smile! 

Kennedy lost her big girl bed (because we needed her crib back for the baby); however, now she has an even BIGGER girl bed...and she loves it!!! She was beyond excited about her new room! She keeps telling us everything that she loves about it! Her first night, she was all ready until it was time to actually go to sleep. She wanted us to stay with her. Luckily, once we loaded her up with her favorite stuffed animals and lovies, she was brave enough to sleep through the night alone. 

I'm pleased to also have the baby's room/study set up. With Brian's job, he works from home at least one day each week. Due to that...baby boy has to share his room with daddy, but I'm sure he won't mind. It feels good to have everything already set up! At this point with Drake and Kennedy we didn't have anything. I had ordered several things, but their room was still a guest bedroom with a queen size bed...no crib in sight. 

Our next project is Drake's room! We have decided to turn our dining room into Drake's room. He will still spend his days in the living room, but at night he will have his own room to catch his zzzz's. I met with a representative from a DME (Durable Medical Equipment) company about ordering his Big Boy Bed that will meet his specific medical needs. I'm sure we will be waiting another 3-6months before insurance can process and make a decision, but we are hoping to have his room complete by Christmas! 

Our little munchkins are growing by leaps and bounds! Yesterday we had their 3 year well check at our pediatrician's office...Can you believe that?
Height - 3' 0.25" (20%)
Weight - 30# 12.8oz (39%)

Height - 2' 8.64" (0.17%)
Weight - 22# 11.2oz (0.15%)
Both checked out great! Kennedy is finally on the charts...well kind of...she's making her own curve. They have come so very far in their 3 years! Looking forward to the bright future that these little miracles from God have in store. 

We love having Drake outside with us!

She told us, "I'm playing with buba!"

Swimming with daddy!

Love watching these two!

His laughter is absolutely contagious! 

He's too cute! 

So much happiness in one little boy!

Baby's room! 

All set up!

Daddy's part of the room

Kennedy's BIG girl room!