I can't believe it's been 2 years since this girl made her grand debut into our lives. This past year has been a hard one.
This girl is loving life right now. She is still feeling good, and having a great time exploring her surroundings!
Tessa continues to be happy and healthy.
This journey with Tessa is changing me.
Some days I feel like it's definitely for the better: my faith in God is stronger, my prayers are more frequent, my compassion and empathy for others has deepened, and my entire outlook on life has changed.
Poor Tessa has been fighting a GI infection for the past two weeks. She felt terrible, and just wanted to be held or pushed around in her little cart. She was so sad, and it was heartbreaking to see her feeling so awful.
Favorite picture:
These two playing together.
Yesterday, Tessa decided that she was ready to move again.
She started off the day by sitting up in her bed (for the first time EVER). She just figured out how to get from her tummy to sitting position a few days ago, which has been so great!
Next, she moved her gait trainer for the first time. And then proceeded to make a lap around the entire basement by herself.
And later, she was sitting and playing with some toys, got down on her tummy and scooted across the entire living room to the bookshelf, sat up and started looking at some books.
I can't even tell you how happy I was to see these little accomplishments. To see her feeling good enough to want to move again, and to try new ways of doing it, is such an answer to prayer.
Favorite kid quote:
Claire, after seeing our cats outside in the snow: "When I own this house, the cats are going to be inside, and I'm going to have three dogs in here too". #notonmomswatch #petfreezone 🙅🏽
Favorite outfit:
Remember how awesome maternity pants were with that soft, stretchy waistband? Yeah, these jeans have that. And they're so comfortable. And they're on sale right now. And you need to go get them.
Favorite food:
Thank you, Trader Joe's, for making these nice and easy to eat. Because deseeding a pomegranate just isn't my favorite thing to do.
Favorite verse:
Nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.
Romans 8:39
Favorite moment:
The moment she realized she could get to that easel on her own.
Tessa was scheduled to have an MRI today, but we were able to cancel it since her infections have completely cleared up. And this is how we felt about that news:
Her malformation is always changing and shifting, so before any procedures are performed she would need to have current imaging. Right now she is happy and free of pain and complications, so hopefully she can have just a little break from procedures and we can get updated imaging when we need them.
She finally got down onto her belly on her own yesterday and scooted to get a toy. She was also able to push herself back up to sitting position, which is a first! She hasn't had a desire to move on her own at all since her infections, so I'm really hoping that's beginning to change.
I'm also trying to get her to walk in this gait trainer. She loves being in it, but just wants me push her around. 🙄
Stuffed animals and pots and pans haven't done the trick, so hopefully Jaymie, her physical therapist, will have better luck. My mom also suggested putting our Christmas tree back up, since that's what got her moving in her baby walker!
Right now, we're thoroughly enjoying having our happy, sweet, and playful girl back. She is learning new words every day, and (so far) handling her new diet well. We don't know what tomorrow will bring, but we're thankful for today! Thank you so much for praying, and please continue to pray that she remains healthy and no new complications arise...for a little while at least.
"Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer". Romans 12:12
Tessa's areas of infection have improved greatly, and it appears that the infection has not spread anywhere else. She's still a little sore and a little swollen, but improving every day. THANK YOU for praying for her. I honestly just cannot imagine facing her situation without knowing that there is a God in Heaven who created her, cares about her, and hears our prayers for her. So thank you for lifting her up to the One who knows her best of all.
We met with her doctors this week about where to go from here. First up was a nutritionist, who gave us a new diet plan for Tessa. The fluid in her abdomen that was drained all came rushing back within two weeks. The fluid in there is called chyle, and it's a combination of lymphatic fluid and fat. Tessa's body is producing too much of it, and we're hoping that by decreasing the amount of fat in her diet that we can also slow down the amount of chyle she's producing. Tessa is tiny, however, and needs all the calories that she can get, so the challenge is giving her foods that are low in LCT fat but high in calories and MCT fat, and making sure that she's still getting enough nutrition for her body.
Next we met with her pediatric surgeon, pediatrician, and dermatologist who are wondering if it's time to consider surgery in her groin area. Her surgeon has not wanted to operate since he met Tessa, as he believes there are many complications that could result from surgery. But the infections she has had in that area indicate that surgery may be necessary. She is scheduled to have an MRI done in a couple weeks, and then the pediatric surgical team will meet to look at the results and come up with a plan.
There are many times when I feel overwhelmed with her situation, and I wish that I could take it all from her and allow her to be a "normal" 20 month old, exchanging hospitals and doctors for walking and playing outside with her siblings.
Life is hard sometimes.
But I do know that Tessa was created for a purpose. I truly believe that she is going to grow into an incredibly strong, encouraging, and motivating individual, and I just pray that I can put my worries aside and help her become the person she is meant to be. Knowing without a doubt that God made her exactly how He wanted her to be so that she can serve a big purpose in this world.
Hello blogging world! It's been awhile. I don't know about you, but between the Eagles win, JT's halftime show, the first glimpse of Solo: A Star Wars Story, and This Is Us, my emotions were all over the place last night. But I am SO happy for those Eagles!
These past few weeks have been a little on the busy side, and filled with doctors visits and difficulties for our little CLOVES warrior. Tessa has been having complications with infections in her groin area, where she has multiple malformations/cysts. She has had periods of extreme discomfort and pain, to the point where she wasn't even able to move without crying in pain. Over the last few weeks she has had sclerotherapy, draining, and antibiotic shots working to get rid of the bacteria, and is now on oral antibiotics. She still has some pain, but just when I apply pressure to the area. She's definitely feeling better, and will actually sit and play by herself, which is so wonderful to see after watching her cringe in pain every time I picked her up. Thank you for thinking of her and praying for her- we feel so indebted to those who consistently lift her (and our whole family) up in prayer!
Meanwhile, the bigger kids have been having some fun amidst the craziness and cold, including:
a bowling party for Claire and Max's friend Lily,
ice skating on the river (yes, it's frozen right to the bottom- and only a foot deep 😉)
some fun at the children's museum,
and lots of time with Grammy, which we were ALL thankful for!
"But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you". 1 Peter 5:10
A few weeks ago Tessa's malformation looked great. It had significantly come down in size, she wasn't scratching at it, and nothing seemed to be hurting her.
Last week, I noticed a slight discoloration on the malformation at the top of her leg. By the next morning, it had doubled in size and was very painful for her. Her doctors confirmed that the fluid inside was inflamed, and will need more sclerotherapy. They believe she will need to have sclerotherapy more often to keep her malformation under control. She was in quite a bit of pain, so her doctor put her on a 5 day course of steroids, which has definitely given her some relief.
She also had blood work done last week, which revealed that her hemoglobin is low again. This Wednesday, as she gets sclerotherapy, she will also get a blood scan to once again see if they can find where her blood is leaking.
This was all very hard to see and hear just when we thought things were actually starting to look better. But we know that God is in control, and continue to put our trust in Him as we travel down this road. We would ask that you pray that her hemoglobin would stay above 7 so that she won't need a transfusion before the sclerotherapy, that the sclerotherapy and paracentesis she is having done on Wednesday would go well, and that the blood scan would reveal where her blood is leaking. Our God is able!
Tessa has had a small umbilical hernia for quite some time, but it never presented any problems. Last Monday, however, I noticed a small discoloration in it. On Tuesday, it was slightly swollen, red, and very tender. I talked with her doctors and sent a picture, and was told to keep a close eye on it. She wasn't running a fever or acting different, so that was good. On Wednesday it looked a little bit darker, so I sent another picture to her doctor at Mayo. She forwarded it to Tessa's pediatric surgeon, who called and said that I needed to bring her up to the ER right away as he wanted to check for himself to ensure that it wasn't incarcerated or strangulated. So I got the older three all set for the night and following day (because I'm not so sure what they would wear to school if it were up to Ben 😉) and Tessa and I headed up to Mayo.
After blood work, an ultrasound, and a CT scan, they confirmed that there is a portion of her malformation (a small cyst) right behind her belly button, which is causing the hernia. There is also a lot of blood flow in that area. Her doctors believe that either the fluid inside that cyst became infected, or she had a small bleed. She was given 2 rounds of IV antibiotics, and we were able to come back home late Thursday afternoon.
The hernia is looking better, and doesn't seem to be bothering her much anymore. Thankfully it hasn't caused any setbacks in her movement either as she's still scooting all over the house on her belly!
ChildLife is always so great about bringing in a plethora of toys to keep her occupied (that and boogie wipes are all she needs)
The nurse was able to get her IV in on the first try, but Tess was NOT a fan of the big board that came with it. She kept holding it up to me as if to say, "Do you SEE this thing?!"
Everyone was cracking up at her quickly changing facial expressions. She says a lot with those little eyebrows!
Once again, I can't thank you enough for praying for Tessa. Her condition is so rare, and any little thing automatically becomes a big thing with her. But we are just so thankful that she is healthy and happy right now, and that she has an army of people praying that she stays that way.
Next on her agenda is a visit to Mayo to see her doctors on January 9th. They plan to do a paracentesis (remove some of the fluid in her abdomen) as well as more sclerotherapy, so we will discuss those procedures when we meet with them again.
