Reminders

Click HERE to support ~ Tessa's Dream Continues! ~

We had no idea what was in store for Tessa when we originally decided to call it quits on public school. There were so many details to line out, so many things that had to fall into place, before it would ever work. It seemed impossible and yet it felt like exactly what we were supposed to do.

I love this quote: "Don't Dig Up In Doubt What You Planted In Faith". There are so many times when we overlook all of the steps we took in faith to bring us to exactly where we are today. When we feel discouraged or begin to worry over all of the details...that doubt tends to surface. I'm thankful for the many steps of faith we took and the incredible provisions God has made for Tessa and her education and her experiences in life!

I'm not only reminded by the quote, but then of course, by the picture below from Mrs. Croom this morning. A sweet friend was reading Tessa a story while she was getting up in her stander, getting ready to work hard. A sweet friend , choosing to be close-by, choosing to participate in life with Tessa so that she's not alone in the feat ahead of her, choosing to read her a book ~ an act of kindness that changes people.

God shows me such clear reminders of why...and suddenly I quit digging. It is incredible to me that in our situation, those reminders can come in the simplest of pictures or the briefest of stories. I am so thankful that when the doubt tries to surface, that I am so vividly reassured of my faith.

Tessa's Dream Continues!

~Whitney

School Experiences Update

Enjoying some spaghetti and green beans 

Jammie day at school!

Sweet friends helping her keep her ears on and hold her head up

And sliding time too!!

Such sweet sweet friends!

Helping Tessa have fun so much fun

Pre-K 3 acting out The Little Red Hen for the school talent show :)

Mrs. Parker and Tessa making a bird feeder together

Deacon Dan welcomed the Pre-K 3 friends over to talk about and give ashes to all the little friends today.

 

Oh. My. Goodness.  Look at Tessa's face! 

She's seriously loving this experience :) 

Just love seeing that huge grin!!

~Whitney

SJN School Experiences!

Twinkie-Selfie-Smiles!  The best :)

Story time with friends!

Oh you know, just a little friend helping Tessa talk on the phone during center time.

cutest. thing. ever.

getting to pet a puppy during Reb Ribon Week

(this particular day was Neon Day)

little miss long legs ;)

a little snuggle time

and a little finger painting!

getting some standing time in during recess and a little special attention ;)

so big!

and THIS!

doing a little painting on her own during center time!

I can't even tell you how much I love about these next two pictures!

this one is getting a frame...for sure!

We are so thankful for the incredible people at SJN!!  INCREDIBLE!

I could go on and on and on about what the opportunities they have provided Tessa have meant to us...and I will, but for now, I wanted to share the glimpses we have gotten into her school days :)

~Whitney

School Update!

Tessa is doing amazing in school! Absolutely amazing. We couldn't be more excited about the experiences she is having in her new environment and with her teacher and friends!

We've been a little quiet because we hit a bump in the road and it has taken a lot out of us mentally and emotionally, but God's timely provision has allowed us to move ahead hopeful and encouraged!

It is hard to deliver the news that Kathryne is no longer working as Tessa's full time paraprofessional at SJN. We were sad and disappointed by this unexpected news, but SJN has gone above and beyond for us and for Tessa. As of last week, we have two new women that will be working with Tessa each week. Ms. Emily will be Tessa's para on Mondays and Wednesdays and Ms. Teri will para on Tuesdays, Thursdays and Fridays.

Darin spent a couple of days last week with each one of them and it has literally been the most seamless transition for Tessa and for us.

It is hard to explain the level of gratitude we have for the Administration and Staff at SJN. Such a shocking change of events could have easily derailed this experience for us, but SJN never wavered. Their commitment to Tessa is incredible and we are so thankful for all of those that have been involved to continue to make this experience a reality for Tessa.

Things don't always go as we have planned, but I believe when we are faithful, they do go according to God's perfect plan.

Thank you for your continued love and support on this journey! Bumps in the road remind us how big of a God we serve. And it gives way for opportunity to see such amazing goodness in those He has intentionally placed in our lives.

~Whitney

http://www.gofundme.com/Tessa

Tessa turns 3! ~ 2013 Celebration Video

Click here for Tessa's 2013 Celebration Video!

Tessa's 3rd Birthday Celebration in 2013 was documented by the amazing Derek Watson (http://www.lampstand.tv/). This is an such an incredible gift of memories. Each and every one of you, not only loved on Tessa, but you loved on us...and you changed our lives forever. Thank you!

In April of 2013, Derek Watson with http://www.lampstand.tv/ created this amazing video of our celebration of Tessa's life when she turned 3!! We have had the most amazing, wonderful, and precious people on our journey and we are grateful to have this creation of such incredible memories!

~Whitney

Tessa These Days

I thought I'd write a little about what things look like for Tessa these days:

• She is still on Trileptal, 0.75 mL 3 times a day for seizures - we like to think that these are starting to correct themselves and will hopefully find out more at her follow up neurology appointment on 9/16.

• She is still on Prevacid, one dissolving tablet a day for reflux - we have seen improvement with her reflux too and she is handling more and more activity and tummy time!

• I'm not sure I've ever mentioned it on here, but Tessa has been on a 1 mg tablet of Melatonin for about 5 months. This has been our saving grace! At one of her appointments before she turned one, we happen to mention to her doctor that we had spent the entire last year up with Tessa every night until at least midnight if not later...needless to say we were desperate. Her doctor told us that kids with sensory issues sometimes need an extra dose of Melatonin to help them 'shut things down' and learn to distinguish night from day. He also said that kids with brain damage sometimes lack the appropriate levels of Melatonin in their brain to help them go to sleep....so with both points being applicable for Tessa...adding Melatonin to her evening routine has been the ticket! It has been such a blessing to watch her have peaceful evenings and slowly prepare herself for sleep....instead of stressful evenings full of moments where she gets scared and trying to get her to calm down and finally rest.
  

As of her 15 month check up appointment on 8/1/11 (we were about a month behind):

• She weighs 18 lbs 10 oz and is 29 3/4 inches long - because of how long she is, she is wearing 12 months clothes in a lot of things...but her little waist is so tiny that she still has lots of 6-9 month shorts/pants and skirts that fit her too :)
  

• She is now taking Lactulose, 2.5 mL twice a day - this is to help with constipation as a result of her diet and some affects of the Cerebral Palsy -- we are hoping to start seeing some weight gain since starting Tessa on the Lactulose, so far her appetite has seemed to increase a little and she struggles a lot less when trying to potty. Now she'll go without having to be in her stander and the help of gravity ;)
  

• She is still taking 4 oz bottles of formula about every three hours with rice cereal mixed in - she has been on Gerber's Good Start Gentle formula for months now and has been doing really well with it - formula will be Tessa's main source of nutrition for quite some time, it has been so nice to find one that agrees with her and is easy on our pocket book too ;)
  

• She is doing so wonderful with stage 3 baby foods - we still have to run a few of them through a hand-held food grinder, but she is doing so much better with changes in consistency and textures

• She definitely eats a good lunch with meats, fruits and veggies every day and depending on our evening scheduling, we've been doing our best to incorporate dinner too

• Kind of exciting...we are brushing Tessa's teeth! She has had such an aversion to 'weird' stuff in her mouth...and it took her a little bit to get used to the idea...but now, brushing her teeth is routine!! YAY!
  

On the therapy front:

• She has physical therapy twice a week: Mondays and Thursdays

• She has Auditory/Verbal therapy once a week on Tuesdays - she's doing really great with her right CI and enough time has passed now that we will start putting her left hearing aid back in too
  

• She has vision therapy once a month - she has a follow up with her ophthalmologist on 9/14 - hopefully we will address the laziness in her right eye and try and get a solution for that
  

Tessa's physiatrist would like for us to add Occupational therapy for Tessa once a week through the Children's Center as well. We've been thinking about trying to work that in with Victoria during the week somehow.
We are about to meet again with Tessa's SoonerStart Resource Coordinator to write her new IFSP (Individualized Family Service Plan). It's really hard to believe it's been almost a year since we wrote her original IFSP after finding out her diagnosis.

• We are still waiting on Tessa's Rabbit stander and her Manatee bath chair. Both orders were put on hold because of insurance authorization issues...but hopefully that has all been resolved and we will be receiving her own very soon!

• Tessa has just about out grown her first pair of DAFOS! We will be making an appointment very soon to get her fitted for a new, more sturdy pair.

• It's time for a medical stroller ~ we've gotten the most we can out of the strollers we have...but they just aren't cutting it anymore. We will be getting some demos (hopefully this week) to try out and see what we like. It's been 6 months since we submitted our orders for the stander and bath chair...so we need to get with it on this stroller deal if we want to have our very own any time soon. Hopefully we are trilled with one of the ones we are able to demo and are able to make a quick decision to order one. It has gotten very frustrating to watch Tessa be so uncomfortable in her strollers...it will be really really nice to have one support her in all the many ways that she needs support!!

It's really hard to believe Darin is going back to work tomorrow and Parker is starting school. We are very excited to share that we have our nanny team in place too! Ms. Kayla will be joining our team, handling Mondays, Tuesdays and Wednesdays and Ms. Victoria will be handling Thursdays and Fridays! Kayla had a chance to spend a day with Darin this last week and Ms. Victoria will be working with her all day tomorrow on her first day! It has been incredible to watch the Lord's provision in our lives. We couldn't be more excited about these two precious young ladies that will be taking care of Tessa. We couldn't have picked a better team to love and care for her and challenge and motivate her through this next season of life!!

~Whitney

Job Posting on Care.com

http://www.care.com/special-needs-jobs

A Gift From God In Need Of Care!

Yukon, OK 73099
Monday, 8/15/2011 through Saturday, 12/31/2011

Our daughter turned 1 in April and is a joy and tremendous blessing in our lives! We are in need of someone to care for her in our home on Mondays, Tuesdays and Wednesdays from approximately 7:30 to 4:30 starting on August 15th 2011. My husband is a teacher and has been at home with our daughter and our 3-year-old son, for the summer. Our son will attend a 3 yr old program in the Fall, so we will need someone to care for our daughter when my husband goes back to work.

Parker and Tessa were both cared for in the home this last February to June after we lost care for them at their daycare because of Tessa's special needs. We really enjoyed working with our nanny team and will have one of them returning to take care of her on Thursdays and Fridays.

Tessa was diagnosed last July with Congenital CMV. Her diagnoses include mild epilepsy, cerebral palsy, profound hearing loss (but she got her right cochlear implant this summer!) and a slight visual impairment. It seems like a lot when I type it all out, but she is our Little Miss Social and loves life! This summer has been so much fun since she received her cochlear implant. She is changing everyday and doing so well!

We are looking for someone to love life right alongside her, to motivate her, work with her, challenge her, and encourage her in everything that she does. If she sounds like the kind of little girl you would embrace as a caregiver, please contact us!
Whitney

Posted by Whitney B. from Yukon, OK

Dear Ms. Kris...

Today is your last day with us and I just want you to know how very much you will be missed! You have been a tremendous blessing to me, Darin, Parker and Tessa. The peace we felt the first night we met with you in our home, was a true marker of God's love and provision for us. I just can't even begin to tell you the impact you've had on Parker's life. He absolutely loves you, and for this, we can't say 'Thank You' enough. And for our Miss Tessa, you have loved her and worked with her and challenged her...and from the bottom of our hearts, we are grateful for the impact you have had on her life and the progress you have helped her make in 3 month's time!

Your huge heart, tender spirit and perseverance has been inspiring to me! With as much as you have had going on in your own life, I have stood in amazement watching you embrace the two lights of my world. Thank you for sharing this time in your life with us. Thank you for taking such great care of our kiddos and know that we will be praying for you and your precious family as you all are transitioning during this time as well.


With love and gratitude,
Whitney

Monday/Wednesday Search

We are still searching for a Monday/Wednesday caregiver. I posted a job on Care.com on 1/13/11 called "A Gift From God In Need of Care" and have read through profiles and sent messages a couple different times, but haven't heard anything back. Darin and I have both put the word out at work too, but so far we haven't had any leads. We are praying for patience as God continues to work this piece out for us.

We have a fabulous young lady helping us on Thursdays and Fridays, that will take over Tuesdays as well, once we find someone to cover Mondays and Wednesdays. For now, Darin's mom is continuing to drive in on Sunday evenings and back home again each Thursday. The repetitive exhaustion of that 6 hour trip can only go on for so long! We have enjoyed every minute of Grandma being with us, but acknowledge that getting all of our lives back to a 'normal' would be more ideal.

We are so grateful that Karen has been able to help us as much as she has over the last month. We were talking last night about how hard it is to believe it's already been a month. I think it has made the transition much easier on Parker...to him it's probably just felt like an extended holiday!! Grandma fits right in with us and it has made for such a sweet experience having her around. Sometimes the most joyful moments come during difficult times ~ the memories we are creating will be ones that we will never forget.

Thank you Karen, for your love, your sacrifices, your support and your encouragement. We could not have made it through this last month without you ~ you are a treasure to us!

~Whitney

Quick Updates

Tessa is feeling so much better! In the last couple of days we've gotten lots of smiles and giggles out of her. It has been great to see her regain her strength and enthusiasm for life!

The kids had a good week with Grandma. We can't thank Darin's mom enough for being here and helping us through a very stressful couple of weeks.

We have decided to narrow our caregiver search to a nanny. We are hoping to get Parker enrolled in another program at some point, but for now, we are praying for someone that can come here to the house Monday through Friday from around 7 to 4 to watch Tessa and Parker.

We're looking forward to a peaceful weekend and are excited to see what God has in store for us.

Thank you for all of the prayers and support.

~Whitney

Who?

It is heartbreaking, as a working mother, to abruptly lose care for your children. It is overwhelming to learn how to trust others to care for, guide and direct your children, and then to have it stripped away with no warning, is devastating. Until this last Friday night, it had been since the day of Tessa's diagnosis, that Darin and I had cried together. The injustice that has been done to our kids and to our family is such a heavy burden. Right now, there is nothing worse, than having to ask: Who will care for our kids?

Parker has not known anything different for the last 2 1/2 years of his life...and Tessa was adjusting beautifully. Parker thrives on structure, activities and friendships and Tessa just enjoys experiencing life and infecting others with her joy along the way. What has happened to our children is a tragedy. Their worlds have been turned upside down.

I have been asked on many occasions, by new moms, how I was ever able to make the decision to go back to work or to stay home with my kids. This was a decision Darin and I made almost 5 years ago, before we ever moved to Oklahoma. It was announced that the company I was working for was being sold and relocated to Oklahoma City, and at the time, Darin was finishing up school. We considered the option of moving to the Dallas area where Darin could earn more as a teacher, but ultimately, God opened the doors for our move here to OKC. The hardest part of the decision for me, was knowing that to choose to relocate for my job, would mean that I would have to be committed to working, even through the years of raising the children we hoped to have.

As I have heard from many working mothers over the years, the only way we are able to go to work and do our jobs, is because we have learned how to trust others to care for, guide and direct our children. Darin and I have chosen to incorporate care providers into our children's lives and it has been a good decision for us as a family. I don't believe there is a right or wrong way...it's just a matter of choosing what works for your family and making the very very best of that decision.

Our world was rocked in July when we found out Tessa's diagnosis. The questions came up: will one of us stay home? will we know the right decisions to make for her care? And with those questions came guilt, but ultimately, we were motivated to stick with what we knew worked best for us as a family. Since that time, we have continued to learned to make the very best of all the time we share as a family and to find the joy in every moment. We are thankful that this journey has allowed us to approach fewer and fewer circumstances in life with fear and more with confidence that God is in control. There is an enormous amount of freedom found in trusting God for the things unknown.

We are choosing to take one step at a time, learning to trust God in each and every moment. For us, life is not about walking around every day putting on a happy face. Life is about experiencing the highs and the lows, trusting God to bring us through what feels like the worst of the worst, and ultimately choosing the joy that we have in our hearts because of the relationship we have with Him.

As Parker's and Tessa's parents, we are devastated. Our hearts are broken for their worlds that have been turned upside down. The way our lives look today, is very different from anything we could have ever imagined. We are sad, disappointed, angry and confused but we will allow God to fight this battle. We will commit to move past the hurt and anger and allow God to restore the joy in our souls. We are asking now, more than ever, for your love, support, encouragement and prayers as we sort through such a difficult question of, who will care for our kids.

~Whitney

Facing Another Mountain

Well, life has taken some very stressful and unfortunate turns over this last week. Not regarding Tessa's health, but regarding her care...and now her brother's care too.

For those of you that will pray for us, please pray for our hearts to be restored. Please pray for us as we search to find, who it is out there, that God has chosen to help us care for our two amazing kiddos. Both Parker and Tessa deserve to be loved for exactly who they are!

Isaiah 40: 4-5

4 "Every valley shall be raised up,
every mountain and hill made low;
the rough ground shall become level,
the rugged places smooth.
5 And the glory of the Lord will be revealed,
and all people will see it together.
For the mouth of the Lord has spoken.”

We will always have people choosing to see us through distored eyes, but what matters to me and what matters to us as a family, are God's eyes; He created us, He loves us, and He goes before us to have our mountains made low.


~Whitney

Daycare Moments with Tessa

Well, it has always been hard to miss the milestones that have happened while Parker is at daycare...as I'm sure is true with any parent with children in daycare ~ but this one just might top them all for us!

I just recieved a precious text from Charity:
Tessa laughed out loud this morning!!!

We can't wait to hear it and see it when we reunite with her this evening!

Praise God for each and every precious teacher at For Heaven's Sake and for their simple daily updates that change my world!

Oh Happy Day! :)

~Whitney

Meeting with Daycare

Thank you for all of your prayers for our time with the ladies at our daycare. We have all agreed that as long as we are all honest with eachother we can reach our goal of the absolute best care for Tessa. The daycare is going to take some time to determine the comfort level with their staff and also spend some time explaining Tessa's diagnosis with them all. The plan is to contact the doctor at The Children's Center and see if he could take some time to prepare a 'letter' of explanation of what it will look like to have Tessa remain at their daycare. Information that will be invaluable to not only the staff at this wonderful facitilty, but also for the parents of children that are enrolled there. Darin and I feel that Tessa cannot receive the best care unless those that are caring for her are comfortable caring for her. We were assured in our meeting with the doctor from the Center yesterday that the care she requires at this point in time does not exceed that which could be offered at a typical daycare facility. On that note: I can promise you one thing: For Heaven's Sake is NO "TYPICAL" daycare facility....it is a house of love, a school of teaching, an environment of care and concern, and most importantly a place touched by God's immeasurable love!!! This place is God's gift and provision for the working parents of Yukon :)

I do not say any of that to put any pressure on them to committ to the undertaking of Tessa's care. I say that, however, with a thankful spirit for what they have given our precious Parker Gage in his two years of enrollment there. I say that for the gift of friendship and encouragement we have found in Parker's original teacher, Miss Charity. The hope that has resulted from the experiences and trials that God has so dilligently led Charity through are now being poured into our lives in ways that only the creator could have designed. Lauren and Lana have our utmost respect as mothers, caregivers and precious women of God. We are all on our knees seeking God's will for this step in our lives...and when we're on our knees, and we are working with people on their knees...we trust that God's provision will follow.

We will be taking Tessa back to school tomorrow, to allow the teachers that will be involved in her care, to have some time to process through what it would be like having her back full time. FHS has committed to us to reach a decision by Friday evening because they are fully aware of our need to continue on this journey until we find what will be best for our Sweet Little Tessa.

~Whitney

Prayer for Thursday

Hi Praying Friends! This is Hillarie and I wanted to post some quick requests for today...

::Please pray for Tessa and her eating (see Whitney's previous post). Also pray for her health as she transitions from the hospital to home.

::Please pray for Whitney and Darin and the meeting at the daycare that will happen at 11:30. Pray for the conversations that they will be having.

::Please pray for Whitney's voice. She has mostly lost her voice and needs to have it so that they can have clear, effective communication today.

::Please pray for rest for Whitney and Darin. They are very tired and are longing to be in a good place for Tessa and Parker.


Thank you,
Hillarie