Making Great Strides

Well, little Miss Tessa has made great progress. As of noon today, she has been off all oxygen and has been doing so good! This video is one of the first times we've gotten to snuggle with her in a couple days...love that she has fewer tubes, wires and attachments.

We'll be bringing in the new year here at the hospital...but with a happier, healthier baby girl....can't ask for much more than that!

~Whitney

Quick Update

They decided to do an Upper GI Test today to determine if Tessa might have issues related to acid reflux disease. The x-rays showed everything to be perfectly normal, which was very good news. If this was something she had been dealing with all these months that we didn't know about, it would have been really great to get her started on medicine to get her feeling better...but we are thankful to not have to add something else to the list of things she's already got going on!

Tessa is dealing with Bronchiolitis, it is a lung infection, often caused by a virus like RSV. They were able to begin slowly weaning her off of the Vapotherm oxygen delivery device this evening. It was functioning at 35% oxygen and at a flow level of 8 liters. The percentage is the amount of oxygen and the liter measurement is basically the level of flow that the oxygen is sent to her. They have reduced the flow level from 8 to 5 liters. Her chest retractions have improved a little today and have remained stable with the flow level change. They still believe she has inflamation and are continuing to give her a steriod to help reduce the inflamation, which in turn, will help reduce the severity of her chest retractions. There is a good chance we will be here through Saturday or even Sunday. After they are able to totally wean Tessa off of the Vapotherm device, she will move over to regular oxygen and begin the process of being weaned from that as well.

We don't anticipate them running any further tests. The goal is to deal with the inflamation in her lungs, totally wean her off all oxygen and no longer see any chest retractions. She'll get there, just not sure when :)

Thanks for all the prayers, encouragement and support!

On a lighter note (just because it makes me laugh when I think about it)-
I asked Darin the other night if I seemed a little crazy when we got to the hospital. I said something like "So, did I do anything like a mad-woman?" His response "Well, You Cut". I was like, "What...I cut?" And he was like "yeah, there were two guys filling out paperwork at the front desk of the Emergency Room and you just like walked up to the desk next to them and said to the nurse what you said". We both just laughed...and I still keep laughing. I guess I just figured: paperwork versus a baby not breathing...maybe it was appropriate to CUT ;)

~Whitney

She's a Fighter

Another Hospital Stay

For those of you that might not know, Tessa was admitted to the hospital last night. It has been a very stressful 24 hours and we are pooped, but I wanted to take a minute to give some specifics for those of you that wouldn't mind praying specifically.

The Last Few Weeks:
Tessa has been fighting bronchitis for a couple weeks now. We went through the whole issue of her reacting badly to the initial meds they prescribed to treat it, which caused us to come home early from Kansas. The doctor called in an antacid to calm her system down and then we were finally able to start her on a 10 day round of Amoxicilian this last Friday. She had been improving nicely and we actually had really good days with her Sunday and Monday. She had an unusually rough night Monday night and woke up a little raspy Tuesday morning. We went ahead and let her go to school because her attitude and overall demeanor seemed normal.

Thought We Were Heading to Therapy:
Darin and I were headed to pick her up yesterday at 3:30 to get her to therapy by 4:00, and right before we left the house, the daycare called to let us know that she was having difficulty breathing. When we got to school it was really clear that something was terribly off. Tessa didn't even acknowledge when we got there and she was really stressed out. She wasn't breathing normally at all...everything was strained and she was grunting a lot. School also said that she had thrown up and they were afraid that she might have aspirated on the vomit because her breathing hadn't been the same since that had happened. As we headed in the direction of the doctor's office, I made a phone call and the nurse said if there was a chance she had aspirated, that we should take her straight to the ER. We were all still fairly calm at this point...we had Parker with us too, just in case we weren't going to be able to get back to school and get him picked up by 6:00.

At the Hospital by 4:00:
Tessa was in her carseat on her stroller and as we were headed inside, she quit breathing on me. I pulled her out of her carseat and took off running (some might say, like a mad-woman!). It seriously felt like a scene from a movie. I ran inside and told the nurses that my baby wasn't breathing. All she was doing was spitting bubbles out of her mouth...she was not able to take a breath in. It was the scariest thing I think I've ever been through. Immediately a nurse came bursting through the ER doors and took Tessa from me. She kept telling me "it's going to be okay Mom....it's going to be okay". They rushed her back to a room and started her on oxygen immediately.

Bringing Everything Up-To-Date:
In trying to make a really long story short...she improved a little after oxygen and a breathing treatment, but not near enough to take her home. They had done a chest xray that showed signs of RSV...but the RSV swab test had come back negative. So they weren't exactly sure what was going on with her and they admitted her around 8:00. The ER nurses tried to get an IV started before we came upstairs, but the veins blew out in each arm. This process caused Tessa a lot of stress and it was the beginning of a very long night. It seemed like Tessa was just getting worse and worse with each hour that passed. Her little body was so weak and just almost lifeless. She had cried out in pain all night long and it was so hard to watch. Every time she took a breath her chest and her stomach would just cave in. First thing this morning they got an IV going on her head and started her on enough fluid to sustain her. She had been throwing everything up for several hours. They also switched her from the regular oxygen to a high-flow oxygen that had a vaporizing affect that would help thin out her mucus and hopefully help her start moving it all around a little better. She has made nice improvements today between the new oxygen machine and the IV fluids. She finally quit vomitting and actually took her first bottle again around 3:00 this afternoon. They haven't been able to specifically determine what is going on, but Darin and I have tried to gather information from everyone we've talked to...nurses, doctors and respiratory therapists, and feel like the easiest way to describe what's going on is: bronchitis, an upper respiratory infection (potentially RSV), and a bacterial infection (potentially pneumonia due to the aspriation yesterday). The bloodwork showed a high white blood cell count which can mean a few things: infection, inflamation and/or stress. We assume she is dealing with all three. They are treating her with an antibiotic through her IV. They believe that it will help treat everything that's going on. She will have a full 24 hours worth of the oxygen treatment and then they will try and wean her off that. If she continues to improve and does well without the oxygen, best case scenario....we will get to go home sometime Friday. If anything changes...that will change too.

Wrapping It Up:
We are tired. We are so thankful for Tessa's improvements throughout the day. Our precious friends Amanda and Tyson are helping us take care of Parker. Amanda told us today that Parker and Eli had a really fun evening last night and they had fun sleeping on a pallet on the floor. Parker did go to school today and everyone was so great when he got there. He will be staying with Tyson, Amanda and Eli again tonight and hopefully be going back to school again tomorrow. When his world is turned up-side-down...we can't explain what it means to have places he can feel safe and dear friends that so graciously open their hearts and their homes to our little guy! To our family, loving and supporting us long distance, and our friends, helping us navigate life in these stressful times....please know that our hearts are full of love, appreciation and gratitude for all that you mean to us and do for us.

~Whitney

Christmas Eve Fun!

Changing Things Up

We had physical therapy yesterday and we are going to start working on a new approach with Miss Tessa. At just a couple weeks shy of 9 months...the reality is setting in that she's got some hard work and catching up to do!
We are going to try and do a little less bouncy seat and swing time and more time in her high chair. The seat sits up and reclines, it has a tray where we can put her toys and it also has the shoulder straps. The shoulder straps keep her in the perfect position to work on better head control. Our goal is to really start helping her make the kind of progress necessary to eventually sit up on her own and start crawling. She spends quite a bit of time in tears in her seat, but we've caught a few moments of fun...hoping it can be a pleasant change!

Daddy's new contraption...pretty clever...and yes, it helped stop the tears!

Still working really hard at holding that sweet little head up...she was doing so good!

The other latest change is her new sippy cup. Even though she can't hold it and bring it to her mouth yet, based on her oral motor evaluation we had done a month ago, she is ready to keep moving along with her foods and the introduction of sippy cups. She has always done so well with her oral motor skills and it is very important that we continue motivating her to make progress in this area. It's been a little weird to get used to the idea of a sippy cup, but we've realized that she will make progress in different areas at different times and we will just always have to stay in tune with what is appropriate for her development.

She doesn't look too happy here, but it's just because she is working so hard to hold on to her little sippy cup!

~Whitney

Christmas in Kansas

We headed to Kansas on Saturday to spend time with Grandma and Grandpa Bynum. We were looking forward to hanging out and relaxing for most of this week, but little Miss Tessa got very sick and we had to come home yesterday. Darin took her to the doctor last Friday and got some medicine to treat her bronchitis before we left town. Unfortunately, it was a medicine she had never taken, and by Sunday, it had started making her very sick. It had been 24 hours since she had held anything down and her bronchitis was getting worse. Since she wasn't holding any of her medicine down, we decided it would be best to get back home in case we needed to get her to the doctor and get her some new medicine.

We were very sad to cut our visit short, but we had a great time while we were there!


My amazing boys...and yes, both with shaved heads in the middle of winter!

Just love these two snuggled up for a picture

Grandma and Grandpa with some pretty special grandkids :)

Before a wonderful Sunday lunch! Thanks Grandma!

Sitting up like a big girl on the couch...just cute!

By Monday she was feeling pretty crummy, but peaceful here on Daddy's shoulder

Tessa seems to be feeling a little better this evening. The doctor called her in some new medicine and we're hoping to start seeing some big improvements by tomorrow!

~Whitney

Specifically

I have been thinking this morning and trying so hard to figure out what is wrong with me. I realized that this time last year I was dreaming about Christmas 2010 for the Bynum4. I had such a clear picture in my head of what this time of year would look like, with Parker almost 3 and Tessa almost 9 months. I could picture Tessa exploring all the presents and crawling around trying to pull the ornaments off the tree. I pictured her big brother helping her open her gifts and showing off all of his new toys to her. I have realized today that I am grieving the loss of the dreams I had. I know God will establish new hopes and dreams for our family, but the reality of the ones lost, is a difficult thing to work through.

A sweet friend at work sent me this precious poem this morning. It has blessed me with a timely perspective.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.

She may not run or laugh or play,
Her thoughts may seem quite far away,
In many ways she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981


~Whitney

Hard Days

Nothing specifically is bothering me (well, or everything specifically), I've just noticed over the last couple days, I've been in a gloomier place. I sent a text to my sisters last night asking them to pray for a sense of spiritual renewal for me. Part of it has to do with the guilt that comes from the replaying of "I didn't sign up for this" in my mind. There are such incredible joys that have come with this journey, and that we experience every day, but there are also some very difficult moments mixed in. Days where I'm searching for an "Easy" button or some days even a "Quit" button. It is very frustrating to admit that I seem to have lost my way.

Hillarie made me several worship CDs after Tessa's hospital stay and I've been listening to one of the songs today. It is helping me find my way back. It's called "You Are Still Holy" by Kim Hill. The version I've been listening to features Kari Jobe and it is beautiful:


Holy, You are still holy
Even when the darkness surrounds my life
Sovereign, You are still sovereign
Even when confusion has blinded my eyes

Lord, I don't deserve Your kind affection
When my unbelief has kept me from Your touch
I want my life to be a pure reflection
Of Your love

And so I come into Your chamber
And I dance at Your feet, Lord
You are my Savior
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
You are still holy

Holy, You are still holy
Even when I don't understand Your ways
Sovereign, You are still sovereign
Even when my circumstances don't change

Lord, I don't deserve your tender patience
When my unbelief has kept me from Your truth
I want my life to be a pure devotion
To You

So I come into Your chamber
And I dance at Your feet, Lord
You are my Savior
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You


To understand that even when darkness surrounds my life and confusion has blinded my eyes....even when I don't understand His ways and when my circumstances don't change, He is holy and sovereign: these are the things that are worth us finding our way back. These are the attributes of our God...the characteristics of the maker of our journey.

There are always joys and sorrows....but more importantly, are the choices we have every day, throughout the day, to find our way back and hold fast to the truths we hide in our hearts.

~Whitney

Visit from Grammie

We had a fun weekend with Grammie in town for a visit. It was pretty cute when Parker would say "Ms. Grammie" and Tessa got lots of extra lovin. Here are some pics to share:

~Whitney

Merry Christmas!

Surgery Update

Thank you so much for all of your prayers. Tessa's surgery for tubes went well. Her right ear is really infected and inflamed, so she will have some blood and drainage for a couple days, but we will be finishing up her oral antibiotic and also starting her on some antibiotic ear drops. She had a little trouble recovering from the anesthesia, so they monitored her for a little while after the surgery. We were at the hospital from 9:30 to 2:00....so it made for a long day, but we are so thankful it's done and hope she'll start feeling better! We won't be able to put her ears on for a few days....which already seems to be a little frustrating for her, so we'll be doing lots of snuggling and lots of silly animations for our little-miss-social's entertainment pleasure :)

She wasn't exactly sure what was going on...but she knew it was all about her...and that was quite alright!

Nothing like getting to squeeze your Daddy's hand right before surgery...precious

She was such a little trooper considering it had been 4 hours since her last meal!!

So peaceful in her Daddy's arms after she recovered from being sick from the anesthesia.


I'm usually the one behind the camera...but you can be sure I got my share of lovin too! :)

~Whitney

All Smiles

A Glimpse at Therapy

We are learning more and more about Tessa's spastic cerebral palsy diagnosis. Tessa has very high tone in her arms and legs but very low tone in her trunk and neck. Spasticity refers to a high degree of muscle tightness, so we have been a little confused why she is lacking so much strength in holding her head up and in her truck support. We have learned that the combination of low tone in the trunk and neck and high tone in arms and legs, is actually very common. We also found out from the neurologist on Tuesday, that this combination (even as common as it is) makes it difficult to treat spastic CP with medication, because if you treat the high tone in her arms and legs, it ends up being detrimental to the already low tone, in her trunk and neck.

Our neurologist is referring us to a physiatrist at The Children's Center. We have also decided to change Tessa to a pediatrician/pediatric developmental specialist at The Children's Center. Her first outpatient appointment with her new doctors will be in January for her 9 month wellness checkup. It is encouraging to be expanding her 'team of experts' that will help us head off potential issues along the way. Cerebral palsy is not a progressive disorder, but the symptoms of CP can get worse. The physiatrist will be the one helping us avoid the worsening of Tessa's CP symptoms. We have been told that this could include things like botox injections, leg braces, or at some point, maybe the use of a walker. For treating CP, the botox is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. We have been told that they have had great success with this method of treatment for CP. We're not sure how far in the future these types of treatments/equipment might be for Tessa, but we are very thankful that she will be seen on a regular basis by the doctors that would ultimately be making these recommendations.

It has been very difficult to watch Tessa make slower progress physically. I told the neurologist at our appointment on Tuesday, that "we have had an infant for a really long time". Tessa is not able to hold her head up on her own, she isn't able to posture her own body, she isn't rolling over or able to sit up. These are the kinds of things that are difficult, considering she will be 8 months old this next Wednesday. I did say 'slower' progress, not 'no' progress...Tessa has increased her strength in her neck and she does posture better today than she did a few months ago. We've asked her physical therapist what it will take to get her to where she can hold her head up, roll over and sit up....and simply said: opportunity...opportunity...opportunity. We just have to continue giving Tessa as much opportunity as possible to develop the strength and stamina it will take for her to achieve these milestones. Lots of tummy time, lots of chances for her to lift her head and control the movement of her head lifted up and side to side. The progress Tessa has made is reflected in her tolerance of these opportunities. In the last few months she has gradually begun to tolerate longer periods of time on her tummy and chances to lift and balance her head. It is such hard work and it makes us so proud to watch her find the strength to work harder and harder at it each and every time!

This last Thursday we had vision and physical therapy here at the house. We always have such a good time working with Deb and Melody. We have been working with Tessa by giving her visually stimulating objects to look at that will ultimately motivate her to reach out and touch them. This is the first time she tolerated sitting in her bumbo seat to do therapy (with help and support, of course). These few videos give a little glimpse into Tessa's hard work during her weekly therapy session. It is an incredible thing to watch and to try and understand how difficult it is for her to do all these tasks at the same time...to sit up, hold her head up, to watch a toy and to try and tell her little hand to push the button to make the toy go. What can I say, she's pretty incredible!

Thanksgiving Memories

I didn't get everyone in pictures...but here are a few from our Thanksgiving holiday!

My special three!

Parker and Kelbie....these two were inseparable!

Aunt Lindsay and Tessa

In the background: Uncle Donald and Haden, then there's Parker, Kelbie and Keaton

Grandpa and Tessa

Left to right: Mason, Keaton, Parker and Kelbie

She's So Creative

Tessa was playing in her swing and we looked over and she had created her own swing-time-entertainment. We thought it was pretty clever of her :)

Video 11.22.2010

Tuesday's Pink Rattle

Blogging is hard. There is always so much to say, but such little time to say it. I get stressed out when there is so much in my head but not enough time to get it all out. I feel like if I jump from my last post to what I intend to write about now...then I've left a huge gap. But then again, I also feel like if I don't at least write something, then that much more time is going to pass, which will leave that much more of a gap! Oh the dilemma!

Let me just say first of all, that we had a wonderful Thanksgiving! We were able to spend time with my sisters and my dad and their families and we all had a wonderful time. I ended up with a sinus infection and bronchitis the day after we got there, I indeed felt terrible, but what's important is that we left there with memories of love, laughter and the wonderful feeling of home! My sisters and my dad hadn't seen Tessa since she was in the hospital, so she got lots and lots of lovin. The cousins all had a really good time together and my sisters and Karen made some most-excellent food. I'm bummed that I didn't get many good pictures, but hopefully I can round up a few to post soon. Four months was such a long time to go between seeing them and I am so grateful for each and every one of them and the love we have for eachother!

Tuesday was a big day. We had Tessa's 2nd three month neurology follow up and it went well. We will be increasing her seizure medication from 0.5 to 0.75 three times a day. Darin and I have been tracking some unusual behaviors over the last month or so, and the neurologist agreed that they sounded like potential seizures. Tessa was 11 lbs 5 oz when we checked into the hospital 4 months ago....today she is 14 lbs 3 oz! She's a growing girl, which is fabulous news, and we'll just be praying that the adjustment to her medication gives her relief from the seizures we feel like she's been experiencing.
After Tessa's appointment we went upstairs to see Parker's pediatrician. Parker also has bronchitis, so we have started him on meds and his breathing treatments again. He does seem to be feeling a little better already!
After Parker's appointment we all went to Tessa's auditory/verbal therapy session at 4:00. The first 'Learning to Listen' command we have been working on with Tessa is to "shake - shake - shake your rattle Tessa." Ms Tami found a perfect little pink rattle that Tessa was able to hold on to. She worked so hard at therapy on Tuesday. We were so pround of how well she was doing...she had hung in the whole hour like such a little trooper. And right at the end of the appointment, Ms Tami said (sitting off to the side of Tessa)...."shake - shake - shake your rattle Tessa"....and I'll be darned if little Miss Tessa didn't give her little rattle the best two shakes I've ever seen in my life. I couldn't believe it....and then I couldn't believe that I couldn't believe it! I mean she is my daughter....determined to a T....how in the world could I have ever doubted her, I'll never know. It was such an amazing thing. What it meant was that she heard us the entire therapy session, working with her on the command and demonstrating to her how to follow through on the command. It meant she found the strength in her tiny little right hand to grab hold of that rattle and not let go...it meant that more than likely had been hearing the rattle shake, and it meant that after an hour of patience and dedication, she heard Ms Tami tell her to shake her rattle and she shook her rattle. It was a moment...a very special moment. This little girl is going to teach me over and over again how silly my doubt is...she continues to prove to me that, with a little faith and determination we can expect to see what, for the moment, we feel like we might never see!

Tuesday was a busy day...from the neurology appointment, to having to take Parker in and find out he had bronchitis...but two shakes of a sweet little pink rattle took away every care in the world. So Tuesday was a big day, on Tuesday we witnessed our own tiny little miralce!

That feels like a really good note to end on, so I will stop there for now. I just smiled while typing all that...and I just hope I never forget what it felt like to watch Tessa work so very hard and succeed at something we so easily take for granted. I am so proud to be a part of her sweet journey!

~Whitney