John Chris is TWO

Our very sweet, very busy baby boy turned TWO at the end of September and we threw him a fun filled Choo Choo party, Rachel style! (Of course!) 

It was a fun party, lots of friends and family came out to celebrate our little guy! He had an absolute blast! We had a big surprise for John Chris on the day of his party, a real choo choo train came to his house!! Very BIG DEAL for a two year old boy, if you hear me talking! ; ) 

The train was a hit, all the kids and adults hopped on for rides around our neighborhood. Like any party planning mom, I was worried about rain! Soooo I started praying TWO months in advance, but with my luck... it rained!! But, two hours before the party the clouds broke and the sun came out, Amen! The party was perfect! 

Here are some fun party pictures I wanted to share with you! Enjoy! 

Happy Happy Birthday my sweet boy! 

One Year Post Op

Today marks Mom's one year surgery anniversary and I wish we were further along in this very difficult recovery process. This past year has been rough, okay it's been realllyyyy rough, but I'm not giving up hope! Mom remains completely dependent on the care that is provided by Dad for all aspects of daily living. We pray that over time she can acquire some level of independence however small that may be and to find a way to accept the many challenges that lie ahead. It seems that during the last three months her progress of recovery slowed down and in someways went backwards.  

Mom's speech has deteriorated and we continue to rely on the alphabet board for basic communication. She continues to work on speech therapy weekly and her therapists are now focused on finding an appropriate electronic device that may allow her to spell out words with training and practice. 

She has continued to be chronically tired, which has led to blood testing by an Endocronologist. It has led to a diagnosis of a need for Thyroid medication. She has been on this new medication for three weeks now with only minor improvement in energy levels. We remain hopeful that additional treatment may improve her overall condition. 

Mom has also recently been treated with Botox injections in her neck and shoulder to ease strained muscles. She now has a difficult time holding her head up. Unfortunately, so many of the treatments that are intended to improve Mom's conditions long term, have the short term effect of making everything worse for some period of time. This has been the case over the last few months. 

We want to once again thank everyone that has offered their thoughts and prayers, letters, flowers, meals, and general good wishes sent our way. We are all extremely grateful for the outpouring of love sent our way. We also would like to ask that you keep my Uncle Jack Mulvihill and my Aunt Judy in your prayers as uncle Jack continues to face challenges with a long term illness. 

With love,

Rachel and John Sedlak

A visit from Pittsburgh

Hello blog world!

I am so sorry that I have been neglecting my blog for some time now - it has been a crazy past few months! (Life with a toddler!)

Last month, our sweet Grandma Kitty and our Aunt Annie with Liam made the trek to Texas to visit Mom. (It was Kitty's first time to see Mom since the surgery). Needless to say, it was an awesome weekend! We had so much with everyone and their visit really boosted Mom's spirits! 

Here are some pictures from the fun weekend! 

Liam, Dad and Kitty

Celebrating John Chris's 2nd Birthday with his GG (Great Grandma Kitty)

Caroline and Ellie made a quick trip to Houston also! 

Pool time!

Kitty playing some tunes for us on the piano! 

Sweet babies in blue.

A trip to Texas isn't complete unless we whip out the sombreros and have a fiesta!! 

First Day of Mother's Day Out

My sweet boy started school last month at St. Martha's and I have some precious pictures to share with you! {How is this even possible? He was just born yesterday!}

Meet the Teacher Day at St. Martha's

 

 

 

 

Such a BIG BOY!

 

 

John Chris posing with Papa!

 

Exciting day for both! (Yes, I cried too!)

 

Typical... I try to kiss him and he's trying to run away! He really does like me... a lot... I promise!

9 months Post Op

Hello sweet friends and family,

Mom is now approaching 9 1/2 months since her surgery and her recovery continues to be extremely slow with only minimal changes that take place, sometimes positive and sometimes not so positive. She continues to work very hard at speech, physical and occupational therapy twice a week and has recently started aquatic therapy once a week. The pool therapy is very good for her as she can move her arms and legs with the buoyancy of the water far better than on dry land. Hopefully this will help her build core strength that is so essential for her to regain the ability to stand on her own, or to attempt walking movements.

Mom and Dad recently visited with the Neuro Eye Doctors and also with an Eye Surgeon. They were encouraged that she is regaining some of the movement in her eyes, although she is still seeing everything double. We remain hopeful that continued improvement will occur in the coming months so that we can avoid any more surgery.

Mom recently spent another night and day in the ER as she lost all feeling on her left arm and leg. This was her fourth trip to the ER since her surgery, and Dad is getting to know the drill pretty well. Following multiple CT scans which again were fine, she was released, but we still don't know what causes these episodes. We can only hope that they stop.

All in all she continues with a very slow, very long term effort to improve and hopefully gain some level of independence. Please keep her and our sweet Daddy in your prayers and many thanks for all those that have already been sent our way! We feel the love! 

With love,

Rachel & John Sedlak

Aquatic Therapy

Pool lift

Walking with the harness. Watch out Target, she's backkk! ; )

Happy Birthday, Daddy!! We love you so much!! 

Thanks for all you do, Dad! xoxo 

We love you, Gramps! Love, B & JCN3

Sweet Momma Update

Good evening sweet friends and family,

Sorry it has been so long since we have provided an update on Mom's progress. I wish we could report on lots of positive change but this recovery continues to be incredibly slow and very challenging. Given the sensitive location of Mom's brain tumor and the hemorrhage, all aspects of this recovery are painfully slow and it will take years to hopefully regain some level of independence. We are pleased to say that she has improved swallowing capabilities, which have allowed her to take all of her liquids without the thickening compound added. This allows her to drink clear water which she loves, but at the same time Dad continues to give her water through her feeding tube to make sure that she keeps hydrated.

Mom's challenges are many as she remains confined to her wheelchair with a weak ankle from her tendon surgery, and is still a long way from using a walker because of the need for improved core strength and improved balance, but we  remain hopeful that with significant therapy she will get to that point in the future. Numbness on both sides of her body continue to be a challenge and this seems to have also effected her speech capabilities as it remains very difficult for her to speak understandably. This leads us to have our primary means of communication be the simple alphabet card which although frustratingly slow, remains the most effective means to let us know what she needs. There are numerous computer apps which allow patients with speech difficulties to type out words and the computer will do the speaking, but Mom's ataxia(tremors) make it difficult to type anything. Maybe with time, one of the apps may help. 

Probably the most frustrating challenge is the continued double vision. Mom and Dad will be seeing an Eye Surgeon in the coming weeks to get her opinion on what might be possible to gain some improvement in her vision. 

Through this all, Mom rarely complains. She loves seeing the Grandkids regularly and Dad tries to keep her moving with frequent trips out of the house to church, shopping, a movie, and even the local 4th of July parade and the fireworks. Mom and Dad also traveled to San Antonio recently to see Caroline and Elle's dance recital which they loved. 

We thank everyone for the continued thoughts and prayers, notes of encouragement and the dinners and snacks that have been sent Mom and Dad's way. They have been incredibly helpful and very appreciated. 

Thank you!!

Love, Rachel & John Sedlak

Memorial Day in Galveston

Hello sweet family & friends,

I wanted to share some fun pictures with you! This past weekend we took Mom on her first mini "vacay" since the surgery. It felt good to get away, but we stayed pretty close to home in case anything happened {as you know, I'm a worrier!} Galveston is about 1.5 hours from Kingwood and only 45 from the Medical Center, so we were close!

It was a short trip, just a one night stay at the San Luis, but it was perfect! I was so stressed out about taking Mom to a hotel and making sure everything was "handicap accessible" for her. I wanted it to be a stress free trip for her and Dad and it was! Amen!! They had a special handicap room that overlooked the beach and it was very nice for them!

I think I may have a new hobby... I want to become a hotel and restaurant critic for people in wheelchairs!! When your life is turned upside down and you're suddenly stuck in a wheelchair, getting around your own house is not an easy task, imagine getting around in public - in places you are not familiar with - IT'S STRESSFUL! I want to help our sweet friends and make life just a little bit easier for them!

Over the last 7 months, I have constantly been reminded that people are good, really GOOD! Strangers always jump to help out when they see us out and about with Mom. Sometimes it's carrying a bag, or holding a door, offering tips because we are obviously very new at this, whatever it may be - IT HELPS! Thank you, strangers!

Enjoy these pictures and please let me know if you know any great ADA compliant restaurants or hotels around the Houston area, I would love to check them out and start my new list!

Love, Rachel