Tuesday, April 22, 2014

Growing in confidence!

Over the last month Jude has really made huge strides in his independence, especially in his therapies.  Every week we go to “school” twice a week.  Jude walks into that place like he owns it. First is Physical therapy, he has gone from having to real coach, redirect, encourage him that its safe to Jude confidently doing things without been asked. After he “completes” his first task he will move himself onto his second thing. After we are finished he says “bye” and “thank you” then we walk over to his Occupational therapist.  Jude loves her, I think it’s because she sings to him all the time and lets him play with puzzles! He loves learning. She works a lot with stretching his upper torso and neck. She also works with different textures, Jude has grown leaps and bounds with what textures he will touch or allow to be on him. Next we head to Speech, Jude has had to speech therapist there and he likes both. He goes into the room with a toy in mind that he already wants to play with. His speech therapist are working towards helping him communicate. We are learning signs, how to use a communication devise, and verbal speech (maybe he’ll show us all and talk non-stop) Trying to learn 1 language is tough, try learning 3 ways to communicate!
On Fridays we go for group therapy. He is in class with 5 other kids his age. Throughout the class period we cover all the therapies. He loves class! On the way there I will go down the list of people we will see and confidently says, “uh” (the sound he makes when he is “talking” agreeing with you) then he’ll “sign” their name (whatever sign he has chosen to give them that day)   Jude always wants everyone to go before him in his class. When the teach ask who should go first it never fails Jude will always point to one of his classmates for them to go first, he points to each child till everyone has a turn. I hope this sweet manner stays with him always J Jude has started blossoming in class he no longer has to have me right next to him the whole time and will actually walk away from me at times (not a lot yet but we are working on it). I say he loves his class but really we both love it!
Once a month we have someone come into our home. She works with Jude to help communicate at home with all 3 forms of communication. He loves when she comes over showing off all his things and all the new stuff he can do J
Twice a month we go to CMH for his feeding therapy. His therapist is amazing! Jude has a love hate relationship with her, loves her because she is great (she also sings to him) but he hates when she gives him massages (weird I know). He has made big strides in swallowing and oral stimulation but still has a long ways to go. Currently he is not swallowing but just tasting food. But he loves all food! He is a very complex child but she is always looking to understand him better! And he always



walks out of there with a sucker J
Lastly is his aquatic therapy! Jude has been with this Physical therapist for over a year and a half, we started out on land not water ;) but in January we transitioned him into the pool. Jude loves taking a bath but his first day in the pool was him crying the whole time and clenching to the sides  trying to grab me. Now he gets in with hardly any hesitation and cant wait to walk to the middle of the pool. The pool has a raising bottom so they raise it so the water goes no higher than his chest. Right now he does aquatics to help strengthen his core and work on his balance; he does not go under water or float on his back. Now when we pass the pool area on our way to another appointment he signs his therapist name, swim, and hippo (we don’t know why he signs hippo). Yesterday we saw his therapist at his vent appointment and we asked if he was going to go swimming with her next week started crying when we didn’t go swimming right then. She has helped him so much and has taught us a lot!
I love seeing how he is starting to enjoy therapy and how he is really starting to understand different parts of it. We are so blessed to have some amazing therapist who adore Jude and really care about him succeeding. I could go on about the different talents they have and how Jude has grown from being with each of them. It is weird for me to think that one day he will outgrow most of these therapies, they have been so vital in his development for so long. We are definitely blessed!  

Friday, April 4, 2014

Where Jude has been

There has been a few articles a media blurps on Jude you can see some of them below:

Jude won the Preemie Power for his age group

 http://handtohold.org/?s=jude
Ages 7-12 months
Jude SJude the Ad”vent”urer
  • Current age: 9-1/2 months old
  • Weight at birth: 4lbs (including 10z tumor)
  • Weeks gestation: 31 weeks 0 days
  • Time in the NICU: 111 days
Diagnosis, surgeries, complications?
Oral Teratoma, PDA, Obstructive thrombus, Progressive Posthaemorrhagic ventricular Dilatation (IVH grade 4s), Choanal atresia, Aspiration pneumonia, Cholestasis, GT/fundo, VP Shunt, Vent Trach dependent, Digestive complications. Removal of Teratoma, plus multiple additional surgeries. Multiple blood transfusions. Lung problems. Development delays. Among other things.

Jude was on 2 of our local TV stations: 

Toddler born with huge tumor makes progress
http://fox4kc.com/2013/09/04/toddler-born-with-huge-tumor-makes-progress/

catchy title huh? haha

Children's Mercy Webpage


A Constant Smile Through All Challenges

http://childrensmercy.org/My_Story/Fetal_Health_Center/A_Constant_Smile_Through_All_Challenges/#.Uz-h1Mevx2c

Fetal Health Center A Constant Smile Through All Challenges


If you are ever at CMH visit the 3 floor (castle elevators) and you will see Jude's picture on the wall :)

 Disciples Today 

It's not the life I had planned
 
http://www.disciplestoday.org/women-today/profiles-in-courage/item-6361-it-s-not-the-life-i-had-planned

jude 4







I wrote a blurb on Jude.






A long waited hello!

I have been feeling for a while that I should really start blogging again. I mean it's been over a year, I kept starting blogs but never finishing them and then I felt there was so much to catch up on I didnt know where to start.
So here I am starting. It wont be a long blog but overtime I will catch you up in how Jude is doing.
In less then two weeks it will be the 2 year anniversary of Jude being home from the NICU. I was recently looking at photos of him 2 years ago and it all just seems so unreal. How is it possible that time can fly by and stand still all at the same time?
Jude is doing great! He still has his trach but no longer has the vent (they took it back, yay!!!) He rarely needs oxygen and has been weened off most of his meds! Jude still is fed by gtube. He loves loves food but cannot swallow. We dont know if this will be a long term thing, a forever thing, a few more months thing. They have done many test and although their is clearly a problem there is no clear cause for him not swallowing and therefore there is no answer on how to fix it. So we are just following Jude's lead and letting him have as many opportunities as he can to taste food and hopefully one day he'll start swallowing :) Jude did have tubes placed in his ears a little over a year ago. We did find out recently that he has slight hearing loss in both ears. They will be replacing the tubes in the next month or so and hopefully that will help clear some things up but we do not know if the hearing loss is permanent damage or not. Speaking of hearing, Jude knows so many signs!!! Because they are still not sure if he will be able to speak (they are leaning towards not fully) we have begun teaching Jude ASL as well as using the ipad for communication. Jude LOVES to sign. He picks up words so much faster then any of us, he definitely knows over a 100 signs.
Jude's appointments have decreased a good amount! Most of the clinics he is followed by only see him once every 6 months to a year. The vent team is now going to see him once every 6 or 8 weeks. Jude has PT, OT, & Speech once a week at the Leann Britain Center. He also goes to "school" there every friday, I stay with him. That is when he has his group therapy. Twice a month Jude has aquatics (he does not go under the water with his trach ;) ) and he also has feeding therapy twice a month, both at CMH. And then 1 a month we have a therapist come to the home.
In the summer we will be traveling to Cincinnati for a consult for Jude. Not that we dont trust our doctors here, we love our doctors but Jude's case is so rare that we are hoping maybe we can find someone who has seen something maybe similar and can give us suggestions. When I spoke with the nurse there to give an over view of Jude's case she said she had never really heard of anything like that. Cincinnati Children's has a world-renowned airway reconstruction team who sees the rare cases.  Needless to say we are praying for answers but I understand that the answer may just be wait. We are grateful they accepted Jude's case. It will be a five days and they will run multiple test and procedures while we are there.
Jude is so smart, no really I know everyone  says that about their own child but Jude really is smart! he can recognize his alphabet and tries to sign the letters (dexterity  at that age is tricky) he is even recognizing some words. he knows his colors, shapes, and numbers. He is very observant and likes to figure things out and perfect things. he is incredibly happy, he has a sense of humor just like his daddy. He always tries to get a people to laugh and loves to show off.

So this post is longer then i thought it would be. I will do my best to add a new post every week even if it's just a short blurb.

Thanks for loving my baby!









Monday, October 22, 2012

VOTE FOR JUDE!!!!

We entered Jude into a preemie of the year contest! Please vote for him..... You can vote every 24 hours, voting goes till Nov 2.


Jude the Ad "vent" ure
click here: Preemie Power for Jude 


thanks for all your love and support!!! 







Wednesday, October 3, 2012

Welcome to Holland!!!

Ok well we are not there but that is the title of this piece i read and felt compelled to share. I cant stay how true this piece is.....

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


-tracy

Monday, August 27, 2012

LIFE ISNT FAIR!!!!!


*this is a blog that has taken me a few months to write so it may seem a little jumbled. men you may not be interested in the aftermath of pregnancy skip the first paragraph.

I was inspired to write when I woke up in the middle of the night last night with a major bleeding, I had gone to bed cramping real bad. After being awake for over an hour trying to contact the nurse to make sure everything was normal I was informed that I have probably started my period! What?! I am only four weeks out from having Jude and I am pumping why the heck am I starting my period already?! Now don’t get me wrong I am pumping because it is good for Jude but I do have to admit not having a period for a while sounded like a nice idea too! All I could think was “of course, of course I would be that small percentage of woman who start their periods back ridiculously early” “of course I would start my period before I even stopped my bleeding from the delivery.” When I told my mom she said well nothing else in your pregnancy has been “normal” I cant help but to think nothing else in my life has been “normal”

I’ve always wanted to have children. When I was growing up everyone wanted to be a doctor, ballerina, nurse, businessman or whatever I wanted to get married and be a stay at home mom. I have always wanted to have children, even though I want to be a social worker that has always come secondary by far distance from being a mom. I would have and do anything to be a mom and even more to stay at home with them. I would read Family Circle when I wasn’t even married while my friends would sit and read US Weekly (haha becky) I thought about how I would do all these things in preparation for my baby to come how I would enjoy being pregnant and proudly show off my belly. Well we know how my pregnancy really went.

The starting of this blog was back in February, I would like to say I have my heart in check now everything in God’s plan makes sense and life is great but of course that is not the case.

Last year my sister, Cassy, got engaged! Cassy wanted a destination wedding and I very eagerly encouraged that, an excuse to go to the beach? Yes please! I also very much supported her asking one of my best friends to go as the photographer(maybe for my benefit J ). Chris and I knew this would be a crazy trip for us, pinching pennies to afford to go and having a 3 month old in Mexico, I even went and picked up passport info to fill out for Jude ahead of time, the thought of missing my baby sister’s wedding was clearly not an option! I mean the besides your wedding the most exciting is your sister’s wedding. It’s that once in a life time moment to share in the celebration. But tonight I sit here in bed with Jude while my family is in Mexico preparing for my sister’s wedding tomorrow. It breaks my heart to know that going to my sister’s wedding is no longer an option, that this will be a time that I will never get to share with her. But of course it doesn’t stop there, at the end of June my other sister, Natalie, is getting married in Alaska, this is also not an option for me to go. My two sisters and I have to miss out on two of the biggest days of their lives….. Yes, life is not fair!!

I feel at times my life is a constant battle, today we were at Jude’s doctors appointment and he was really wanting to be held but if I held him then he couldn’t eat. This was not a problem for other mom’s in the waiting room.  I cant carry Jude around the house with me, he cant go in the swimming pool, we cant leave the house for more then 4 hours, I cant just put him to bed when he is tired; his cares take almost an hour at night, I cant run to the store with him; it takes at least 30min to load him up w multiple people helping, I cant leave him alone for more than a minute or two, I cant breast feed him, I cant leave him with just any babysitter(actually besides Chris & I only my mom can watch him); they must know all trach cares, I cant hear him talk accept for less then an hour a day when his cuff is down,

Note this is now my third time trying to finish this blog and I now have it all figure out! Ok maybe that last part is not true. Well both of my sister’s are married and to add to the fun Jude had a shunt placed in his brain on Monday. He now has four foreign objects in his body and in a few months when he gets tubes for his ears it will make five! I am afraid to ask what else could he have placed in him?!

Well it is August almost September and Jude is still on his vent, he was only supposed to go home trached. I feel like him and I live in the living room. Although we are making progress I feel that we/he should be farther along. There are so many things I want to do with him and place to take him, he’s my little baby I want to show him off proudly.  we have had a few realization talks of where Jude is at and what that means in our near future. We had planned (maybe naively) to travel with Jude to the NorthWest, this wont be happening for the first few years of his life.

OK this is my fourth and final time writing this blog and as you can tell there are still many things that I find not to be fair & maybe you agree or maybe you don’t.

 I cant help but to think life isn’t fair, then my mom’s voice in the back of my head says, “life will never be fair!” ughhh I hated hearing that growing up! Who knew it would be preparing me for my adult life. I find myself often trying to make things fair for people or what I assume to be fair. I don’t want people to miss their chance or not have every opportunity. Truth: I feel bad for the mop that has to stand in the rain because the person has found their new Swiffer (ridiculous I know). My econ professor would always talk about how people being born into certain wealth or life style doesn’t matter because if everyone when born was given the exact same amount of money and aloud to pay whatever to whoever and however much there would still be rich and poor people. He’d always ask the class who would actually willing pay the same amount to a random officer out of their own paycheck as they would to go see a football game. We want fairness but really what we want is a life of no pain. We want our cake and eat it too. I think I have spoken about this before, but I don’t believe God is punishing me or trying to teach me a lesson. I think God cries with us, he felt the pain and cried the day we found out about Jude’s tumor, he cried with each painful moment Jude had. Satan wants us to believe that God did this to us and now we have to face this horrible life but God did not do this to Jude he knew this was going to happen and so he began to set life emotion to help guide Chris and I to be the right parents for Jude. Chris and I always talked about his decision to work as a special Ed teach and mine to be a Social Worker was no coincidence we knew God must be preparing us for something (& not the being poor part). How can I say life is not fair and pout when I clearly can see God preparing so many things and people to help us in this journey with Jude. It’s so easy to be tempted to look at the other side and only see the negative in our lives but the truth is without all this “bad” stuff I wouldn’t have the Jude I have now I would have another baby and all though I am sure I would love them they wouldn’t be my Jude and I cant imagine not having him tubes and all.

I know I don’t have it all figured out and I can say that Satan is constantly tempting me with what I “deserve.” He plays into my shame when I want to scream making me think I dont need to be a whiner but then when I try to be "strong" then I am not fully honest. so maybe this blog is my way of saying life is not fair but that's ok because God is my strength and he will pull us through and has given us all the blessings.  We all have hard things in life I am not saying we just act like they are not there but I have made the decision not to dwell on the bad. We all have three different ways we can see our own lives either written only with the bad and missing what blessings we have, being written only with the good and not really honestly seeing our life, or being able to accept the bad and know the good is a great blessing. I could probably share for pages the things I have learned in regards to what is fair, being truly grateful for what we have, and ultimately trust but I think it can be best summed up in this scripture:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it.  I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.
And my God will meet all your needs according to the riches of his glory in Christ Jesus.
Philippians 4:4-13 & 19

Friday, August 17, 2012

Go for Gold!

     It's an exciting time right now in America.  The Olympics has just finished up with the US finishing on top with the most medals and consequently the most gold medals.  The Presidential race is heating up with talks from both camps guaranteeing their candidate for victory in a few short months.  Football, both NFL and NCAA, are rearing up to start while baseball is nearing the end with the World Series in October.  There's quite a lot going on and yet Tracy and I are not very aware of any of it. I myself caught maybe three or four minutes here and there of three or four events in the Olympics.  (To be perfectly honest though, I have never really cared at all about the Olympics).  As far as the Presidential race is concerned all I know about either candidate is what I hear about in commercials for the news shows (again, being perfectly honest, I hold very little stock in who the president is and think neither is worthy of a vote, although that's best saved for another talk that I'll never have).  I suppose my point is that with all that's going on in the world we seem to focus a lot of our daily attention to Jude right now.  It's tough not to.  Not only because he's so cute, which is fact whether it's coming from his dad or not, but also because he is making some exciting progress in his growth.
     As some may have already heard Jude has recently started trialing off his ventilator (as you can see up above he likes to even trial himself off).  What this means is that three or four times a day we unhook him completely from the ventilator for up to five minutes and let him breath completely independently.  So far, it is has gone really well with the exception of his allergies flaring up and getting him a little sick earlier this week.  Even with his allergies, it was an unexplainable feeling to hold him and walk around the house for the first time, completely free from any hoses hanging off of him.  From the look on his face he thought it was pretty neat too.  In addition to trialing off the vent, we recently started him on some solid foods.  Now, to clarify, I mean more taste-testing than eating.  He's not exactly getting a meal out of the foods.  Tracy has fed him some basic baby foods: your strawberry/blueberries, your strained sweet potatoes, etc.  He also tried some condiments which was recommended by his Occupational Therapist.  He seemed to like ranch dressing the most, although if I were choosing from salsa, ketchup, and ranch I think I would choose ranch out of the three as well.
     It's exciting to see Jude at this point along the journey we also know that we have a long way to go.  Many have asked us when Jude will be off the ventilator completely.  I wish I knew that answer or that anyone knew that answer.  That's between Jude and God, I suppose.  We can hope that by around the Holiday season (November to the end of January or so) we can expect him to be off the ventilator during the daytime if things continue to go well.  We will slowly, month by month, increase his time off the vent until he is off for a half an hour or more at a time until he shows that he has no real need to be on it.  He will be on it at night for awhile, however.  Since we slow our breathing down when we sleep, vent-babies are kept on the vent at night even after they are breathing independently during the daytime for a significant period.  Even just imagining him off the ventilator during the daytime hours seems fictitious and a million years away.

     For now, we are excited to see his progress and feel very fortunate for all the support we have been given and continue to get.  We would be far worse off if we did not have so many people by our side and God who provides everything we need, including love and friendship.  I will try to keep those that are interested updated on Jude's progress and hope to post a video soon with his time spent off the vent.