Thursday, April 28, 2011
Standing Therapy!
MRI Next Saturday
The things we learn......it's funny, it was a bit of a shock the day Tessa's neurologist told us 'no more MRIs after cochlear implants'...but when you only know it as "MRI" and not "Magnetic Resonance Imaging"...you don't put 2and2 together very quickly. And really, it wasn't even knowing what MRI stood for that helped us understand...it was the explanation that the machine would pull the magnets out of Tessa's head if she ever had a scan done with her CIs. Anyway, so for those of you that didn't quite understand why it's her last one either...I feel a little better about my ignorance ;)
The MRI may or may not show or tell us anything different from her original one they did when she was hospitalized and diagnosed in July, but we would just like to know that we have the most current one that we can, while we can. Tessa's doctor said we can sit down and compare the first scan to the second one and educate ourselves a little more about what the images tell us at this point in her life. I remember telling (joking with) the doctors at the hospital in July that I wanted them to know that I thought they were all full of crap because I just couldn't believe there was anything wrong with our baby girl. We never saw any images back then, we were processing through so much information at the time, that I didn't really need to see proof of the calcifications on her brain. I am thankful for the opportunity now though, to educate ourselves and also to have images for comparison...who knows what we'll see :0)
We need to make sure Tessa stays really healthy between now and next Saturday, so for those of you that will add her to your prayer list over this next week, we'd be grateful! The scan itself will take about an hour and then they will be monitoring her afterwards. There's a chance for some complications with the anesthesia because of Tessa's experiences with RSV. If there are any signs of breathing complications, they will be able to admit her and then monitor her overnight, if necessary. We are praying that she handles everything just beautifully! If she doesn't do so well recovering from this 1 hour procedure, because of her history of RSV, we will definitely have a few more nerves wrapped up in the anticiaption of her recovering from the 3-4 hour long CI surgery in June.
We're not really stressed, just realistic that there is a chance she could be admitted next Saturday, just like there is a chance she could be admitted June 7th after her surgery. She's proven how strong she is...and I can hear her now..."Quit worrying mom...I'll be fine!" ;)
~Whitney
Wednesday, April 27, 2011
Great News!
Parker is incredible with his sister and has grown up so much faster than we could have ever prepared for. We just hate that there have been times where it seems like we get in a pattern of "Parker, not right now okay, we've got to work with sister" or "Parker, you can play with that later, but for now we need it to help work with Tessa" or "Parker, I promise we're almost done working with sister and then we'll go eat (or) go play outside"! Therapy and such will undoubtedly get more intense after Tessa gets her cochlear implant, and I just can't tell you how much more Darin and I will relax knowing Parker will have a routine to call his very own, with new friendships and new experiences to fill his days!
I am so grateful for this time that Parker and his sister have been able to bond, being together at home, and I'm praying for a fun-filled summer for Parker and Tessa and their Daddy!
Thankful for peace today that has come with God's provision for our family!
~Whitney
Tuesday, April 26, 2011
A Blessed Birthday!
Monday, April 25, 2011
Invaluable!
~Whitney
Tuesday, April 19, 2011
Yesterday was a GOOD Day!
The DAFOS are a little hard to see in this picture, but they are cute little leg/ankle/foot splints and then the therapists even got her a cute little pair of new shoes to wear over them.Silly me should have known to take our good camera, but I honestly didn't even think about the possibility of catching a moment of her standing up...so a terrible cell-phone-video it is. Shame on me, but I must say, the surprise of it all was priceless.
The therapist had asked us if Tessa had ever stood up in our laps or anything and our answer was "no". Any time we've ever tried to get her to bear weight on her legs, her feet have always curled in and her legs have always buckled under her. Yesterday, she was strong! excited! and a champion of all champions!
Throughout the entire appointment, she never shed a tear, she never got frustrated; you could just see the anticipation building in her that something BIG was about to happen...and I think she knew she was about to surprise us all!
Obviously, I'm on cloud nine. All I wanted to do today was stay home and play with my sweet girl and watch her see the world in a whole new way! Tessa has had two firsts, two days in a row. I am so grateful to be a part of her life.
God is good and I just love that His joys are extreme!
~Whitney
Sunday, April 17, 2011
Tessa's First Bye-Bye
Friday, April 15, 2011
For Now, We Will 'Tell' Her Story
Isaiah 65
New Heavens and a New Earth
17 “See, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind. 18 But be glad and rejoice forever in what I will create, for I will create Jerusalem to be a delight and its people a joy. 19 I will rejoice over Jerusalem and take delight in my people; the sound of weeping and of crying will be heard in it no more. 20 “Never again will there be in it an infant who lives but a few days, or an old man who does not live out his years; the one who dies at a hundred will be thought a mere child; the one who fails to reach[a] a hundred will be considered accursed. 21 They will build houses and dwell in them; they will plant vineyards and eat their fruit. 22 No longer will they build houses and others live in them, or plant and others eat. For as the days of a tree, so will be the days of my people; my chosen ones will long enjoy the work of their hands. 23 They will not labor in vain, nor will they bear children doomed to misfortune; for they will be a people blessed by the LORD, they and their descendants with them."
I trust that one day Tessa will be made new. God promises, in detail, the design of our eternity with Him in Isaiah 65. In Hebrews 11 verse 1 it says "Now faith is the substance of things hoped for, the evidence of things not seen." My faith in God's promises is what tells me that one day Tessa will hear perfectly, she will see perfectly, her body will be formed perfectly, her brain will be without imperfections, her pain will be gone, her struggles no more...the design of her story today, will one day take on God's design for her eternity. These promises give me peace to know that this day will come, and they motivate me to seek God in every aspect of my life today.
Tessa's story is such a difficult one to try and explain, and for that, I find myself grateful for the ways in which she is being "equipped" for opportunities in her life. I believe the equipment serves as visual explanations of Tessa's story. On July 31, 2010, the day after her diagnosis, we took a precious picture of Tessa in the hospital with her IV hat on her head. On August 17th, she was fitted with her adorable new pair of light pink hearing aids. In just a few days, she will be fitted with her new pair of pink and white dafos (leg braces). On June 7th, she will have her right cochlear implant (CI) surgery and then on June 22nd it will be activated and she will begin wearing the external processor for the CI.
Tessa is a year old, but because of her physical disabilities, I would assume to most, she just looks more like 6-9 months old. Her hearing aids help tell the story of her hearing loss, but we have not had any method for explaining her physical disability. For the most part, as long as people haven't asked how old she is, we haven't seemed to encounter much confusion. I am a little surprised by it, but I am actually very excited to be getting Tessa's dafos. For once it will feel like we will have a bit of an explanation for why we put her in her stroller every where we go. For once there will be a visual explanation for those that are shocked to hear she is a year old. And the timing couldn't be better, considering I mailed off our Physical Disability Parking Placard Application to the Oklahoma DPS yesterday. I can remember the days when I would watch the people parking in the handicapped spots and at times, wonder what was wrong. There will still be those that just see what appears to be a perfectly happy, healthy, normal family with a 3 year old and a baby in a stroller. But hopefully for those that might pause a little longer, they will notice the dafos and choose to be satisfied with 'explanation' other than troubled with confusion and judgement.
There are things about Tessa's story that have intense application in my walk of faith. As a Christian, I want my story to reflect God's love and compassion for the people around me. I want to learn something new every day that equips me to impact someone else and to embrace opportunities to show love and compassion to others. For me, bearing witness to what God has done in my life, is something I prefer others to see, not necessarily hear. Sometimes I feel like there can be too much time spent trying to "explain". Explanations are things that are heard, while to me, being "equipped" provides opporunities for others to see. We are all such busy people. We are walking in the tunnel of our own lives; juggling our marriages, children, family, friendships, jobs, activities and exhaustion. There seems to be fewer people who stop and take the time to talk, ask or listen. I am learning that I can't depend on opportunities to arise to explain Tessa's story, but I am learning that people do take the time to stop and look. So, in my own walk of faith, I want to make sure that those looks are met with reminders of God's love for us. And I'm learning, the only way to turn a glance or a stare into a visual reminder of God's love for us, is for me to take the time to equip myself with God's word and God's ways and pray that in a moment there is an impact and an explanation that goes beyond any words that could be spoken.
So for now, I will be thankful for the equipment that helps 'tell' Tessa's story...and even more thankful for what her story is teaching me about faith, hope and love.
~Whitney
Tuesday, April 12, 2011
More Picture Fun
Saturday, April 9, 2011
Friday, April 8, 2011
A Year Ago Today!
Since I have failed miserably at keeping up with Tessa's baby book, I have decided to recap the events of a year ago today, to always have a record ~ even though it feels like I will always remember them, down to the very last detail! I hope Tessa will be able to look back at these posts some day and see moments that highlight God's amazing and beautiful purpose for her life!
This time last year I was at work and having contractions throughout the day. Finally around 3:00 I decided enough was enough and headed home to try and rest. Tessa's due date was April 22nd and my c-section was planned for April 16th, but our little missy had a different plan in mind. When I got to the house I was actually feeling a little better and told Darin I really really wanted to take Parker to the mall to Build-A-Bear so he could have his new buddy for the 'big day' in case that day was coming sooner than we thought. So we loaded up and went to the mall. I was hurtin...leaning on counters and pausing in pain throughout the store, while Darin and Parker frolicked through the store stuffing, bathing, clothing and naming ~ Scruffy! I tried so hard to be apart of the fun...but found it a bit challenging. We decided to go sit in the food court and get something to eat. After a few bites, I told Darin I just couldn't do it anymore. The contractions were not letting up and had only gotten worse since we had been at the mall. On the drive home we made a plan: we would go home and gather our things, take Parker to our friend's house and go ahead and go up to the hospital. Worst case scenario, they would look at us like we were crazy and tell us to go back home because I wasn't in labor :)
So we packed our things, got Parker dropped off, for either a few hours or over night, and headed to the hospital. We got to the check-in desk and I did the dreaded "I think I'm in labor" spiel. They casually got us back into a room and checked me....and yes...I was dialated to almost a 7! It's funny how relieved I was just knowing that we hadn't wasted their time and that I was right about being in labor....7 cm dialated worth of right! Luckily our doctor was in-house and we were ready to go into surgery within the next hour or so. I remember Dairn making a trip or two out to the car once we realized we were staying, and also making a few phone calls to some family, just to let them know it was time :) The experience was unique, no family, no friends, just me and Darin awaiting the arrival of our baby girl.
I will never forget the moment I heard them say "4 lbs 15 oz"! I remember such intense confusion. Just a week before, at our last OB appointment, the doctor predicted we'd be having another 7-8 pounder. Parker was born at 37 weeks and was 7 lbs 12 oz and 20 inches long. I remember Darin walking over to where Tessa was and the doctor was finishing up my surgery. I found myself in a moment, looking around, unable to find Darin, unable to find the anesthesiologist~ who had both been right by my side the whole time...and I freaked out! I remember saying very loudly (maybe yelling ;) to Darin..."I'm not okay, I'm not okay, I'm NOT OKAY". In that moment, when everyone around me had disappeared, I thought that they were gathering around Tessa because something was wrong. I thought that no one was telling me anything because something was terribly wrong with her. I panicked! Within seconds, the anesthesiologist was giving me something in my IV and suddenly I was calm. Then I remember him and Darin and my doctor chuckling about the 'happy juice' (or something)...all was well ~ thanks Doc. And within another few seconds, Darin was bringing Tessa over to me for kisses and to take our first picture.
Tessa arrived on April 8, 2010 at 10:19 p.m. At 38 weeks, she weighed 4 lbs 15 oz and was 19 inches long. She was "healthy just small" they said. Other than some jaundice, Tessa's only other struggles were maintaining her body temperature and gaining weight. They ran lots of tests, but everything was coming back normal. It was good news, but there was still so much confusion. It wasn't a comforting thing to see perplexed doctors. I was reluctant for weeks to post any pictures of Tessa anywhere. I had an aching feeling in my heart that something wasn't right. She was born at 38 weeks...only 2 weeks early, but so tiny. I just couldn't accept "she's just small". In the months prior to finding out Tessa's Congenital CMV diagnosis, I had been praying, asking God to finally put my fears to rest. Asking for His help for me to accept Tessa for exactly who she was and rest assured that her life was in His hands. Little did I know, the information to come, would reveal the profound application of those exact prayers.
A year ago today the Lord began teaching me the about the truest of applications of His word in Proverbs 3 : 5-6 "(5) Trust in the Lord with all your heart and lean not on your own understanding; (6) in all your ways acknowledge Him, and He will direct your paths."
Happy 1st Birthday my precious Tessa Rayne! I love you! You are a gift - You are God's treasure - You are our joy - You are a life of such promise and purpose - and you are changing us all! You have done, in just one year of life, what others strive to do in a lifetime. You have been a light to this world and have had an impact, that I believe, God has chosen specifically for you to have. I admire your strength, determination and your perseverance. I am in awe of God's careful and precise creation of you. Today I celebrate your life! Today I celebrate your accomplishments and the Little Miss you have become. Today I pray for your future and for the continued impression God is making upon your heart. Today I promise to keep working hard, right along side you...for every success and every milestone that await your arrival!
I Love You with all my heart!
~Mommy
Monday, April 4, 2011
Such Dear Friends
Amanda, Tyson and Eli, thank you for your friendship! Thank you for loving us and giving Parker such love and care in the moments when we needed help the most. Thank you for praying for us and always being there to talk to. The boys have a bond that melts my heart! "Thank you" will never be an adequate expression of my appreciation or describe the blessing it has been to have ya'll in our lives. We love you, we will miss you, but we look forward to the adventures we will have together in the future!
Friday, April 1, 2011
New Experiences
~Whitney
Booth Test Videos
If you listen closely you can hear the static-type noise in the background (after we're done praising Tessa the first time). This is the sound that we are waiting for Tessa to show a response to. When she responds to the sound, we reinforce her response with lots of praise and encouragement. The box up to the right of Tessa lights up with a bunny and Tami also uses a light-up toy to show Tessa on her right side to reinforce that her response was correct and she heard the sound on her right side.
After Tessa gets done coughing in this one, you can hear Kimi, the audiologist, speaking softly "Peak-a-boo Tessa.....Uh-oh Tessa". And it's so neat because Tessa actually responds vocally this time, right after Kimi speaks the words 'uh-oh'....Tessa vocalizes....so cool! We got really excited! And again, Tami reinforces Tessa's responses by pointing to the pink bunny and encouraging Tessa's response.










