So the BIAU race I talked about on my last post is coming up quick on the 21st. Just to clear things up it is not a race to raise money or anything for Dakota. It is a race for a non-profit organization that supports brain injuries. So all money for the race will go to this organization to support all of the good work that they do to help support brain injured people.
As far as Dakota...we were thinking about getting shirts for all of those that come out to run BECAUSE of Dakota. A couple of my amazing friends have been running ideas past me and our hope is to find a way to get the shirts for free so that all of those that come out to the race because of Dakota can wear a shirt and we can all be united as we run for him. We have a couple of places that have offered to do it for cost so we were trying to find any companies that would wanna sponsor the shirts and pay towards this low fee and we would get their names on the shirts. If not we may have to have everyone pay a small amount for a shirt.
We are trying to get a rough estimate on how many shirts to order so if their are any of you readers out there who are planning on coming to the race if you could either leave a comment, send me an email, shoot me a text or call me so we can try to get a ballpark number of how many shirts to order ASAP that would be awesome!! My email is firstname.lastname@example.org and my number is 801-388-8223.
We hope to see as many of you out there as possible to support this great cause! Remember...you don't have to be a runner...they call it a run, walk, stroll...so no excuses! :) And of course Dakota would love to see all of you out there as well!
Tuesday, April 19, 2011
Well, there are a few little things that don't tie in together that I need to write about so in no particular order here we go.
So in 24 hours we had two emergencies that we had been trained and told could happen but have never happened and I kind of started thinking...oh this will never happen. Think again...they did...and within 24 hours of each other. What the heck!!! So the first one was in the middle of the night about 1 a.m. We didn't have a nurse that night and we were feeding Dakota. His tubing was hanging from his side rail on his bed to the pump. I noticed on our video monitor (which has been a lifesaver!) that he started waking up and moving a lot. I then didn't see his tubing in the monitor so I thought he must have hit it and it came disconnected from his extension out of his Mickey button (g-tube). I go in there and low and behold the whole button had come out of his stomach and the balloon that holds it in his stomach had popped so it was no longer usable. Now for all of you out there who don't know much about this stuff which is probably most of you (which is a good thing...I wish I didn't know about it either) it is not a life or death situation but if you don't get something in there soon the hole can close up and they would have to surgically go back in and open it back up. Luckily they prepare you with an emergency kit for these kinds of situations. Ours was in the car so Zach hurried and grabbed it and we got the emergency catheter in and all was good again.
Well, it didn't end there though I wish it had. The next evening I got an invite from my cute neighbor Terra across the street to come sub for the Bunco group that I used to play with before Dakota's accident. (Sure miss those cute girls) Zach was home with Dakota...he does an awesome job with him even without his sight...he's AMAZING! So we are nearing the end of the night and Zach barges in there door and calls out my name. I of course come running up and he informs me Dakota's TRACH came out. Are you kidding me...panic mode! This of course is a much bigger deal since it is his airway we are talking about. Poor Zach had him in the tub and somehow which I don't know how since his chain is tight, his trach came out. Zach rushed him out of the tub and attempted to undo the chain to get the trach loose to put it back in. Well, the chain is hard to undo even with a perfect set of eyes so he gave up wasting time and was gonna call me but he couldn't find his phone. Luckily, I was just across the street so he was able to grab me. I freaked poor Dakota out running in and rushing around his poor little neck. Luckily he was still breathing okay out of the hole in his neck and his mouth and nose so he wasn't without oxygen or anything but it was still not good. We survived it all though and are now better prepared and will no longer think that that would never happen! :)
Random #2 Baclofen Pump Trial
So Monday we were at the hospital all day for a Baclofen Pump Trial. So because of where Dakota's brain was injured he had SEVERE spasticity that he slowly developed over the first few weeks in the hospital. This is where his muscle tone was so tight that you couldn't even bend his leg without breaking a sweat or straighten out his arms. Baclofen is a medicine that helps with spasticity to relax the muscles. Well, Dakota was put on pretty much the highest oral dose you can take because his was pretty severe. So, the doctors wanted him to have this trial where they inject the medicine directly into the spine to be more effective. The benefits is that he would be on A LOT less Baclofen because it goes directly into where it is bbeneficial instead of being absorbed throughout the whole body. The pump would be inserted into his stomach like an insulin pump for someone that has Diabetes. Anyways, over these last few months his spasticity has improved drastically to the point that that they rated him at a normal persons level. His arms, legs, and hands have all improved and are loose and have a good range of motion. This is due to his healing more then to the Baclofen at this point. He needed the initial help of the Baclofen to even make that possible though. The problems that he still has is what they call Dystonia. This is where he makes certain abnormal movements of his body and "postures" his body in certain positions that are due to the brain injury. These are not all the time but they are just throughout the day. That has improved though over time. The Baclofen does not treat dystonia as well as spascticity so the trial went okay. It helped some and so they still think it would be beneficial for him to get the pump but it doesn't totally eliminate it. So they also recommended seeing a neurologist that specializes in abnormal body movements to talk about a different procedure that they do something directly to the brain. So we will meet with him hopefully soon and talk about all the options. Bob the director of NACD believes that through his program these symptoms could hopefully be eliminated through his therapies so to hold off on it all. I personally have seen these symptoms all get better gradually over time so am hoping that as his brain continues to heal and that they will continue to get better and eventually go away on their own. Overall, we have a lot on our plate to think about. These are some major procedures that take a lot of thought. It is hard being the decision maker over something so serious. I just pray we will make the right decision for what is best for Dakota!
Random #3 BIAU 5k
So I found out about this organization that is a non-profit organization to help research and learn more about brain injuries...prevention...support...just all about the brain stuff. Every year they do a 5K run, walk or stroll to raise money and it is coming up on May 21st at Liberty Park in Salt Lake. So I thought I would put it out there for anyone runner or not runner to come out and support this great cause. I will definitely be running in it and hopefully it will be a nice day we can bring Dakota out and if I even have enough strength maybe even push him in the race...we will see...he is chunking up these days. :) But we would love to have as many people come out and support this cause and Dakota. I was thinking it would be fun to do shirts or something so that everyone who came because of Dakota could all be united. Not sure how to go about it or what to do so if anyone has any great ideas I am open to whatever. I am not a good planner with stuff like this so any ideas or help is appreciated! :)
Random #4 Speaking of 5K's...
So everyone who read my last post about sweet Dylan...if you haven't already gotten on their amazing blog...which you are missing out if you haven't...on May 2 they are having a Dancing for Dylan in Layton. It is going to be an amazing dance performance by some amazing dancers. They will also have a silent auction and kids carnival. It will be fun for the whole family so try and go. Then on May 7th they are doing a fundraiser 5K in Pleasant View. I am planning on being to both so you should too! :) They also have cute shirts and bracelets for sale on their blog that say Doing it for Dylan. Please support this cute family in their great cause to keep fighting to help Dylan. All of you parents out there know...you would do ANYTHING for your child and that is exactly what they are doing. You just can't give up and neither are we. Go to their blog for more detailed information. dylandshaw.blogspot.com
Random #5...Speaking of blogs
Someone commented that I linked Ashley's (that I wrote about from my last blog) blog wrong so I wanted to correct it for anyone that was interested. Sorry...I can't even keep track of my own blog let alone others. patrickandashley.blogspot.com
Random #6 Western Wishes
Dakota has been chosen to be a part of this amazing organization called western wishes. They sponsor kids that have been given major challengers that love the western way. Well we all know Dakota is a little cowboy so this is so perfect for him. They are kind of like Make a Wish Foundation in that they will pay for you to go do something or just do little things for you. Tonight they dropped off a cute basket for Dakota that had THE CUTEST western shirt in there...(I will have to get a pic of him in it), a little horse, books, signed autograph of Tuff Cooper, and a cute little rope that I was excited about. ;) Thank you to Rachel for letting Dakota be a part of this amazing organization.
Random #7 Wonderful Family
I have been thinking a lot about Zach and I's family lately especially because of some comments some people have made to me. Now I have always known that we both have the COOLEST, FUNNEST, SWEETEST, ALL AROUND BEST families in the whole world. We are so blessed to have both of them in our lives. Through all of this they have been our lifesavers. Zach's family is always doing something to help us out whether it is driving Zach around for us, cleaning our house, bringing us meals, doing our laundry, making or buying things for Dakota, getting us groceries, babysitting Dakota so Zach and I can have a chance to be alone, even sleeping over so we can get some rest, or just visiting. My family although all the way in AZ are constantly doing things too. My mom and dad have been up here several times to help out, my sisters and brother are calling, texting, or sending me sweet letters to strengthen me and lift me up. They have also been out to to visit and give me hugs. Without them we would never make it so I just have to say a HUGE thank you to them. A couple of friends of mine have commented when I tell them all that our families do for us how lucky we are and that they are not as close or wouldn't have that kind of support from their families and it makes me realize even more how blessed we are. I know I can ALWAYS call on any one of them for anything and even if they were in the middle of something they would drop anything to help. We Love you FRIEDLIS and WINTERTONS!
That about wraps it all up for the moment...I know when I post it I will realize I for got something but that's ok!
WE LOVE YOU DAKOTA!
Daddy wants you to feed him more birthday cake!
Monday, April 11, 2011
Because I am so behind on my writing I decided I better make two posts to get it all down instead of one REALLY long one. I know when they get so long it is overwhelming to read...even for me.
These past few weeks I have been trying to focus on my blessings and there have been several things that have happened that have impacted our lives so much and has touched my heart that I can't help but share.
It all started with this book my sweet mother-in-law gave me called When you can't do it Alone take the Savior's Hand. It is an incredible book if anyone is looking for some good reading. The author had a whole chapter on blessings and thanking God. It really hit home with me because I am down and struggling it is REALLY hard to see and focus on my blessings. It's a lot easier to see how much we don't have then to focus on what we do, especially since our life has been turned upside down for the second time. Here is just a tiny sample of what he says,
"I learned that one of the most important ways to focus on Christ is to focus on the multitude of tender mercies He extends to us in our lives. It takes real effort to "count your many blessings" when the natural man wants to wallow in self-pity and focus on pain and problems. Have you ever noticed how difficult it is to look at life as a glass half full instead of a glass half empty when we are discouraged and depressed, beset by hardships and heartaches? It takes effort--spiritual and emotional effort. While it may be easy (and almost always a waste of time and energy) to dwell on all of our problems, it takes conscious effort to think about the many ways God has blessed us. It takes faith to think about, really believe, and then live in a way that bespeaks "because God has been so good to me.""
I have been trying my best to focus on the blessings but I'm not gonna lie...some days it is hard.
After reading and pondering this I read a comment from a sweet girl named Ashley (who I have never met) on my last blog post. (I hope she doesn't mind me sharing this) Her and her husband lost their only little 18 month old precious girl named Preslee in a drowning accident. She wrote to me: "My heart is so incredibly happy that you get to hold him, feel him, love him, and experience life with him. Something we drastically miss." WOW! After reading her comment I of course had to get on her blog and read the story about her precious Preslee. Reading it brought back everything with Dakota and our first week in the hospital. Their experience was SO similar to ours except the outcome was so different. I don't know why it was Preslee's time to go and why Dakota got to stay. Probably because he knew his parents weren't as strong as Preslee's or any other parent who has lost a child, but I realized that even though every day is hard I need to thank God every day that I do get to hold him, feel him, love him, and experience life with him. Every day is a blessing and miracle that he is here. Although we miss how he was, we still have him and he still brings us so much joy just in different ways at the moment. So thank you Ashley for opening up my eyes and pulling me out of my own self-pity. If anyone wants to read about some amazing people just visit their blog http://www.ashleyandpatrick.blogspot.com/
My heart did not stop there. In March we were blessed to be the recipients of not just one...but two fundraisers in Dakota's behalf. They both happened to be on the exact same night in two completely different states. It was incredible to know that people were gathered together in two places all for Dakota and in helping him progress. One of them was a dinner and auction that my sweet parents in AZ put together at their house. Of course we didn't get to be there but we heard it was AMAZING! Soooo many people were there and were so incredibly generous. We could feel the love all the way over here in Utah. So thank you to ALL of you who helped plan and make things run so smoothly. Thank you to all of you who donated SO much stuff for the auction. My parents had to put together a blog just to list all of the things that were donated, and that night they just kept coming. Thank you to all of you who came and supported Dakota and this crazy journey we are on.
Here are just a few pics that were sent to me of that night:
Amazing angels in the kitchen
Papa entertaining the kiddos
My amazing friends and their moms helped with the money. I hope you slipped some for yourself! ;)
More angels helping serve the food
The silent auction tables
The REAL DEAL auction...grab a number...they had some sweet stuff!
Some of Dakota's cute cousins! Love you girls!
Dakota's cute picture
So many people
Along with this amazing tournament this incredible family the Huff's who were recipients of the tournament last year, put together a dinner at Sonora Grill to help raise funds as well. It was incredible getting to meet them and their adorable daughter who had a brain tumor and has had several surgeries and is doing so well. It helps so much to get to know people who understand the difficulties of facing tragedies that involve your children. You can't fully comprehend how hard it is and how much it changes your life until it happens to you...at least I couldn't. So a huge thank you to the Huff's for their hard work and time to help our little Dakota.
Zach and I with the Shaws (who you will learn about...keep reading :) )
The best part about the whole thing was that Dakota got to be co-recipients with the most AMAZING (this word does not even do him justice) nine year old boy named Dylan Shaw. You talk about a family and a boy who are going through so much and have touched my heart deeper then they will ever know. Getting to know them has been a life changer. Dylan has a tumor in his brain stem that is inoperable. Despite EVERYTHING that he is going through the first time we met him he asked us how Dakota was doing. SERIOUSLY...first of all...what nine year old kid cares about someone other then themselves...especially one who is going through something no child should ever have to go through. At the basketball tournament that night he had the most sincere conversation with me wanting to know all the details about what happened to Dakota, to what surgeries he has had, to how he is doing. Then to top it all off...after all is said and done he shows up at are house with his beautiful and sweet mom to give Dakota a basket of fun things that he bought with his own money!!!! Dylan showed me how to be Christ like and taught me how important it is to serve and focus on helping others instead of focusing on are own problems. I have tried each day to be more like Dylan...to look for opportunities to help someone else instead of wasting so much time worrying about my problems. Their family motto is: "Don't waste today worrying about tomorrow." I do my best to remember that when I find myself worrying. If you wanna be truly inspired by some incredible people read there blog and follow Dylan's journey. http://www.dylandshaw.blogspot.com/ He could use some prayers and faith too!
During half time when they presented the award they gave us the opportunity to speak. Zach and I had agreed before hand that if that happened I would talk. I was feeling up to the challenge. As you can see...that is not me behind the microphone. As soon as Trek started introducing us and telling a little about Dakota's story the tears just started flowing and I knew I couldn't talk. Luckily I have an amazing husband who had my back and did an amazing job. I love you Zach! :)
Getting a kiss from Daddy
Us with the Shaw family and the championship teams
The hardest thing is just coming to the realization that I can't change anything that has happened to us but I can make the very best out of what I have been dealt. My life may not look like what I had imagined it being like but it can still go on and it can still be WONDERFUL! It's just gonna take a lot more effort and a lot more reliance on the man upstairs!
So after all of this blabbering on and on...my point is I know that I am SO very blessed and I want to thank all of you for playing a part in blessing my life. For teaching me by your words and examples. I thank you for your prayers and faith. I thank God for ALL of the blessings that he has given me!
To all you parents out there I beg you to enjoy the blessing of having those kids of yours on the bad days as much as the good. When I used to go to the store and see and hear a kid screaming and throwing a fit i used to think...I'm so glad that's not Dakota. Now when I see it I look at that mom with such envy and adoration and think...I wish so bad that was Dakota. I would honestly give a lifetime of tantrums in public to have Dakota healthy and whole again. Until that time I will keep working and praying that they will come. So PLEASE embrace those moments and enjoy them!
WE LOVE YOU DAKOTA!
My cousin made this incredible video of Dakota to play during the night. It makes me bawl every time I watch it but I love it so much! Thank you Sandra!
So like I always say...where has the time gone. I have wanted to sit down for a long time now and write down all that has been happening but I honestly don't have a spare second these days so like always, there is SO much to catch up on and so much I will forget to write...but here goes nothing!
First of all, we are home from the hospital!!!! Hallelujah (however you spell that) We got to come home on Tuesday which was MUCH needed for all of us! Dakota was so fussy in the hospital and I could just tell he did not want to be there. Since we have been home...I have never seen such a happier kid. He has seriously just been so much fun to be around...smiling, laughing, happy, and so content. This is the little boy I know!
Smiling playing with his the contraption his vision therapist made him.
Just another cute smile!
Second, and the thing that has taken up every spare second that I thought I had before is his new therapy program. We met with a company called NACD (National Association of Child Development) a few weeks ago. The founder of the program Bob Doman has so much knowledge and experience with brains and believes that anyone has the ability to function at a normal level and above if they are given the right stimulation. He works with kids of all levels from your average typical kid, to learning disabilities, to downe syndrome, to kids like Dakota. It doesn't matter where the child is at or what their abilities....he looks at the individual child and develops an individualized program for that child to help them reach their full potential. It was very interesting meeting with him and getting a fresh perspective. It felt so good to know that someone else who is a lot smarter then me :) also could see potential in Dakota and fully believes that he can walk and talk and do all those things that we want him to do so badly again.
The hard part about it all is that all of the therapy is on us. They give you everything you need to do it and teach you but then it is up to you to make it happen. So needless to say we are round the clock doing therapy with this boy. The main goals right now for Dakota are motor function, vision, and oral motor. The vision part in his brain was affected from the trauma. He still totally sees but his vision may be a little blurry and his eyes don't work perfectly together yet. It's nothing you can really tell by looking at him unless you are really trying to look for it. With Zach busy and working now most of the therapy rests on me. Luckily, we have some truly amazing selfless people that have so willingly volunteered to help me out since some of it can't be done without two people. I can't thank them enough for being willing to do this. It was very overwhelming the first week but I am starting to get the hang of things and don't have to stare at my notes every second anymore. Dakota actually enjoys it for the most part. Some of the physical stuff he doesn't love so much but he seems a lot more happier doing therapy then just hanging out.
His sweet glasses ("cool dudes" as we call them) that he wears a couple times a day to help his vision.
They make for a great peek-a-boo
We finished 40 treatments of the hyperbaric and are now on are three week break before starting another 40. It has been SO nice to have more time at home, especially with the new program but I know that the hyperbaric is a good thing that we feel good about so pretty soon we will be back on schedule heading up to Logan for another round. Depending on Zach's work I may be making the trips alone with Dakota and I may be the one in the chamber with the little guy. I'm a little nervous about that but we will see what happens.
I met with the preschool staff for kids with disabilities last week. When Dakota turns three he is eligible to start preschool which is in Corinne. They have kids at all levels there. As soon as the meeting began the tears just wanted to come. I did my best to hold them back so they didn't think I was a nutcase. I never imagined being in a meeting like this and to be quite honest I didn't like it. I want Dakota to be able to go to the preschool I chose for him not one that he qualifies for. I wanted them to be able to see my little Dakota running around, not going to school in a wheelchair and watching other kids play on the playground. This is one of the hardest parts of this all. Everything I had pictured and dreamed about for Dakota and our family no longer looks the same right now and it is hard. I'm not giving up the faith that one day it can but until then I am trying my best to make the best out of what we have been given. I saw this quote and I try and remind myself of it often..."Life doesn't have to be perfect to be wonderful." Our life definitely is nowhere near perfect...in fact it is so funny to see the reaction on people's face who don't know us who find out that Zach went blind almost two years ago and then Dakota had a brain injury 4 months ago. They are always in awe and can't really believe that so much has happened to us not just in a lifetime but in our short 27 years of life. (We can't either) People always say that if you could trade other people trials that you most likely wouldn't do it...I'm pretty sure I would trade :)...anyone willing?! Just kidding. I have thought a lot about our situation. I have asked myself...if I had known before having Dakota or before marrying Zach that all of this would happen...would I still have gone through with it all...and the answer is YES!!! Because the reason it has been so extremely hard and painful, is because they have both brought me more joy then I have ever experienced and that is why it is so painful. I would never have known what true joy was or what real pain feels like without them...so it is worth it. And I will keep trying to make this not so perfect life as wonderful as it can be!
We are still watching Dakota progress and are grateful for every little thing. He always seems to get more alert and attentive to me and I know there is so much in there that wants to come out more and more! Even the preschool staff we met with were very impressed with how alert he was...which made my day to hear them say that. In their words..."he is so alert, that is really good. Some kids with these injuries do really well." He comprehends a lot but the hard part is responding back with what he wants to do with his body tone. We can ask him where's mom or dad and he will start looking around until he finds us. We can ask him if he wants to do different things and he will give you a smile if he does. We can hold up two objects and ask him to look at which one he wants and he will look at them both and look at one longer. When you say "this one?" he gets a big smile like you got it! He is smiling and laughing like crazy these days and they are so much bigger then when he first started. They are closer to his real smile. He has started making facial expressions that are more like they were before the accident. The biggest one I noticed the other day was his sad face where he is about to cry but not wanting to cry. It was just like he used to make and it was so awesome to see. He struggles with being able to move his body how he wants. He will just stare and smile at a toy I have to play with but when he tries to do something with it he just gets really stiff and rigid with his movements and can't do what he wants to do. I can't imagine how frustrating this probably is for him.
He is getting stronger with his head and trunk...lifting his head up even higher on his tummy and tries to lift up in his reclined car seat. He is getting better at getting his body in a good position to roll and just today rolled on his side from his back which is the hardest one. He does good from his side to back or tummy and from his tummy to back. His eyes are working better together in just these last few weeks. We started capping trials with his trach...which means placing a cap over it so he can't breath in or out of it and has to do it all like normal. You start off slow so so far we are just at ten minutes a couple times a day. He has done pretty well with it though and we hope that it will help him strengthen those muscles and hope to get the trach out in the near future. It still depends on his swallowing which we are working on those muscles too but the breathing and swallowing are codependant on each other. We are just loving him to pieces though and will not stop working and praying and doing EVERYTHING in are power to help him.
Holding his head up strong on his scooter.
His occupational therapist Pauline making him work!
And he still likes her in the end! :)
Thank you to all of you who are not giving up on him either...who are praying and thinking of him! You have no idea how much it means to us and to Dakota!
KEEP UP THE HARD WORK DAKOTA!
Your big boy potty is waiting for you!
Sunday, April 3, 2011
So I know I am way far behind on my updates as always and I have a lot to update but not time at the moment. I just wanted to write a quick update since our poor little guy has been in the hospital since Thursday night with a respitory virus. Thursday night around 11 I went in his room and noticed he was breathing pretty fast. I didn't worry too much since he had been good all day and was sleeping good. Then around 12:30 he started coughing and threw up a little bit and woke up. Then I noticed his heart rate was in the 160's and not coming down and that's when I started worrying. We kind of waited and watched to see if it would come down for bout 45 minutes and it didn't so we got in the car and headed down to the ER at Primary CHildren's. By the time we got there he had a temp of 102. We were hoping it was nothing and they would send us home but unfortunately we are still here. They thought it might be pnemonia or RSV by the way he was acting but after a couple of chest x-rays and some blood tests it looks like it is just the rhino virus (which is just the common cold). It just hit him a lot harder then other people.
Today he is finally looking a lot better. He hasn't had a fever all day, he is breathing a lot more regular, and he is on less oxygen. He is looking a lot more like himself too and has even managed a few smiles and even a laugh today. They still want to watch him for a bit so we will for sure be here another night but I am hoping in the next couple days we will get to go home.
Being here in the hospital just makes me sick...I literally get uneasy now when being in the hospital becuase we have been here WAY too much for not good things so even talking to doctors and nurses just gets to me now. At the same time I have to appreciate the hospital, the doctors, the nurses, and it all because they are what saved my little guys life. He wouldn't be here without them so while I HATE being in the hospital or even thinking about hospitals...I have to love them at the same time.
The one thing that has brought me joy is to see the huge difference in Dakota from his last hospital stay to this. Being here with him this time has helped me to see how much he really has progressed. When we were last in the hospital we always had someone in the room with him but we could come and go in the room as we pleased and Dakota could care less. He was not really even aware that we were there. He didn't have a lot of expression but would cry a little. I couldn't comfort him back then when he cried he just cried to cry. Back then we would do everything we could to get a reaction out of him and were so thrilled that he would follow a light with his eyes. This time it is so different. It is more like having a 2 year old in the hospital. He cries if anyone leaves the room. He wants to be entertained or he gets bored and cries. He likes to watch cartoons and be cuddled. It is just amazing the difference being here. I can tell he just wants to go home. And hopefull soon we will!
We love you buddy! So sorry you aren't feeling good!