Tessa These Days

Tessa is working so hard these days. She is using her arms and hands more and more. She loves to pull her hands up in front of her face and wiggle her fingers and just smiles from ear to ear. She's holding on to her bottle with at least one hand more and more. She is mastering the art of reaching for her toys and grabbing hold of them. I walked in her room the other night and she was playing in her crib watching her mobile...I asked her what she was doing and she immediately grabbed hold of her slinky and pulled it straight to her mouth and then grinned so big. She knows she makes me so proud and couldn't wait to show it off...it was great! It has been so neat to watch the change in how much effort it used to take for her to even reach for her toys, to now grabbing hold of them so quickly and then moving right into playing with them and bringing them to her mouth. It is an incredible thing to watch her new experiences and discoveries.

We are having so much fun using her HuggaBebe. Tessa's PT told us to position something under her feet while she's in the jumper so that she can start learning how to stand flat footed. It is important to get her weight-bearing on her feet ~ so that's next in order.

Tessa is also working really hard on her head control. Daddy was home with the kids this last Friday and got a really good video of Tessa's hard work! These are such joyous moments to see how far she has come and how motivated she is to get better and better. Tessa's head control is the hardest thing for her to work on right now. I just can't explain what it does to my heart to see her work so hard to achieve something so difficult. She is amazing!

We've been talking with Tessa's PT about the use of equipment coming up pretty quick. The first pieces of equipment that will be appropriate for Tessa will be a stander and a small gait trainer.

Obviously medical professionals will be the ones picking out the best pieces of equipment, but I like this stander...probably for the color options ;) The hardest thing will be finding equipment that adjusts small enough for Tessa. She's only about 26-27 inches right now, so it could be a challenge finding the appropriate sizes. The stander would be something that could offer Tessa some head support, but really any equipment beyond that will require her to have good head control on her own. We need to get her up on her little legs and we have lots more to start helping her develop....so prayers, prayers, prayers for head control would be wonderful!

This will just be something we utilize at home to give Tessa more opportunities to grow and get stronger. Here's a picture, just to give you an idea of what a stander looks like and the kind of support and opportunities it will provide:

http://www.rehabmart.com/product/leckey-squiggles-stander-25807.html
More Information on the Leckey Squiggles Stander:
Includes: hip and chest support with sternum prompt, chest and hip lateral supports, kneecups, footplate and tray attachment. (Requires covers and pivot base or easel base. Squiggles is available in the following colors: Green, Orange, Blue and Pink.

The Squiggles Stander by Leckey, helps children from 6 months to 5 years old engage in a wide range of activities by allowing them to convert from one standing posture to another. Modular in construction with two main parts'the standing support base and the chassis base. The standing support base can be easily clipped on and out of the chassis bases in seconds for easy storage or transportation.

Specific Benefits include:
* A cushioned pelvic positioning support and chest support which can adjust in height, depth, width and angle.
* An adjustable cushioned sternum pad.
* A large angle adjustable foot plate.
* Cushioned knee supports individually adjustable in height, angle, rotation and depth and cushioned knee pads.
* A large angle adjustable footplate that supports foot sandals.
* A variety of base options ranging from a compact easily storable easel base with angle adjustment from vertical to 60 degrees to a pivot base offering a wide range of tilt incline options adjusting from the vertical to near horizontal.

~Whitney

We Have a 3 Year Old!

Well, we officially have a 3 year old on our hands! We had lots of fun celebrating Parker's 3rd birthday as a family. First it was dinner at Alfredo's (his favorite), then we came home and baked a cake together. All hand-picked by Parker: Strawberry cake with vanilla frosting and "sparkles" (aka: sprinkles)! He is such an amazing little man!

His sister is amazing too and is doing better and better every day! Tessa is back to being Little Miss Happy and Healthy! She is gaining all of her strength back and is making great progress in all realms of her therapy.

~Whitney

Sunday Fun!

Parker and I were lucky enough to get tickets to watch the Harlem Globetrotters this afternoon ~ and we had a blast!

It's something I've wanted to do for years and I loved getting to enjoy it with the greatest little boy in the world!

~Whitney

9 Month Pics

We're a couple weeks behind, but we finally got Tessa's 9 month pictures made today. We just love how they turned out!

Our beautiful little girl!

(the colors didn't scan in near as good as the originals...but still good enough to share ;)

~Whitney

Glow of Independence

We found out about this neat little invention from one of our therapists last week. It's called a Hugga-Bebe (http://www.myhuggabebe.com/).

This was the first time Miss Tessa was able to sit totally unassisted (by us) in her bumbo. We are so excited to get to expand her world of play to her jumper and exersaucer too.

Thanks to Grammie for finding us a pink one and getting it to us this week.

There's nothing like Tessa's sweet glow of independence!

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

Catching Up in Photos

Tessa and her little glow worm friend

Christmas time cuteness ~ with her bottom two front teeth

Highchair time with her bugs and slinkies

Hospital time entertainment...just to help it feel a little more like home :)

So peaceful



Tessa lovin her some CPT

Finally off the oxygen...changing things up with her bouncy seat~yay

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

Today's Update

Tessa is making good progress again today. She has had three feedings and all of her oral meds for this morning, and has kept them all down. She has had 2 breathing treatments and we are about to do another.

Darin and I will be alternating our days off this week, so he'll be home with her tomorrow. We have had an appointment on the books for a couple months now, with Dr. Brannan at the Children's Center, this coming Monday the 10th. Originally, we were just taking her there for her 9 month wellness appointment for our initial visit with him, now we will just have lots more to talk about. Our discharge orders from the hospital were to follow up with Tessa's pediatrician in a week. I told the hospital that we were in the process of changing doctors and asked them to make sure Brannan got copies of everything so we could discuss this most recent hospital stay with him, as well.

We will also be seeing Dr. Wright at the Children's Center on Monday the 10th. He is in Pediatric Rehabilitation Medicine and is who our neurologist has referred us to for Tessa's physical care and cerebral palsy diagnosis.

~Whitney

Taking the First Shift

Today was a good day until around 8:30 tonight. Tessa was in my arms trying to rest, but she seemed very uncomfortable and kept crying out. All of the sudden she started vomitting. It kinda came out of nowhere... no choking, no coughing, just all the sudden. I tried to sit her up and help her and I hollered for Darin. A few minutes later we were able to get her to her changing table and get her jammies off and get her cleaned up. The next thing we noticed was her chest was retracting pretty significantly and her nostrils were flaring. These were the signs of distress we had been watching for in the hospital. Darin went ahead and did her breathing treatment and CPT to try and help give her some relief. She took it all okay and so a little later we decided to go ahead and try and see if she could hold down some of her oral meds. Just moments after we gave her one of her meds, she started vomitting again. She is so weak and so tired and it is incredibly painful to watch her suffer and go through all of this.

All I could think was "why?" Why did all that just happen and now we are going through all this again. Today had been pretty good. Tessa slept quite a bit, but overall seemed to have a pretty peaceful day. All of the sudden things were stressful. What do we do now? Why is she getting worse? How do we both go to sleep without having monitors, and oxygen, and nurses watching everything for us? We have everything we need to care for her here at home except for oxygen and monitors. We do have a breathing machine, we have a suction machine, we are able to do her CPT, and we have all her meds.

Her Albuterol breathing treatments are every 4 hours for a week. The steroid that we also give her through her nebulizer, is every 8 hours for a week. They had said in the hospital that if Tessa was resting well at night, that it would be fine to skip the breathing treatments at night and just start them first thing in the morning. Well, Tessa isn't doing well tonight, so her next breathing treatment will be at 2:00 a.m. I am taking the first shift, so I decided it would be better to stay up and check on her periodically, up until her next treatment.

I talked to Lindsay a couple hours ago. I had texted her, just asking for her to say a prayer for Tessa tonight cause she wasn't doing well. She was asking me about why Tessa's vomitting seemed to trigger the strained breathing, and we ended up talking about how difficult it must be for Tessa to throw up with the residual inflamation in her lungs. She is weak right now. She can hardly control her neck or hold her head up, she can hardly bring her shoulders back and find trunk support to try and gain some stablility during something as exhausting as throwing up. The respiratory virus Tessa has had has caused significant inflamation in her lungs...it is no easy task to for her throw up...so I guess it only makes sense that it is an even harder thing for her to recover from. It will take some time for the virus to run it's course.

So, I am taking the first breathing treatment shift tonight, I am trying to pass the time and stay awake until Tessa's 2 a.m. treatment, but more than anything, I have been searching for peace in my heart for the pain my daughter is going through tonight and the pain she will endure for her lifetime. I don't understand why she has to suffer...tonight or any other time in her life. As her mother, the desire to take it all away, is unbearable, at times. I am searching for peace and for strength. I am searching for answers to questions that I feel hold a greater meaning than what I can comprehend in this moment.

Amy, one of my sister's friends that was over at her house this evening at the time she got my text, sent me her own text about an hour ago...scripture of strength:
Psalm 31:19-22
19 How great is your goodness, which you have stored up for those who fear you, which you bestow in the sight of men on those who take refuge in you. (20)In the shelter of your presence you hide them from the intrigues of men; in your dwelling you keep them safe from accusing tongues. (21)Praise be to the Lord, for he showed his wonderful love to me when I was in a besieged city. (22)In my alarm I said, "I am cut off from your sight!" Yet you heard my cry for mercy when I called to you for help.


I had been asking God to give me the strength to stay awake and alert until 2:00 a.m. I had been praying for peace to stay calm through the night. I need help to face tonight, but the truth is that my heart also aches for all the pain there will be to deal with in the future. Tonight I need to take good care of Tessa. But this is the calling I have for her for my lifetime. So, as I asked God to give me strength to make it through tonight, He gave me the comfort and blessing of knowing the promise of strength I have for the future...found in Pslam 31.

~Whitney