Friday, December 31, 2010

Progress Report

Where has the time gone??? I had to take Zach to Kinko's today, when we took a little break from the hospital and the guy said to pick it up tomorrow the 31st...I was like WHAT???? It's New Year's Eve got to be kidding! It is crazy how the time just seems to be traveling by. But since I found out it is almost the new year...I thought well maybe that's a good thing for us...maybe we can hope for a better year and exciting new changes. (I'm not going to count on it since each new year has brought with it it's own set of challenges for the last three but hey three strikes your out...RIGHT???? At least that's what I'm hoping for.)

Well, SO much has been going on up here it has been too crazy to try and keep it all up to date...sorry to all of you! There doesn't seem to be a moment where there is not at least someone in our room doing something with Dakota or talking to us about one thing or another. Some days it is a little overwhelming and it seems as though we have no time alone but they are all so amazing here and we have been very pleased with the wonderful people that are working with Dakota.

Christmas came and Santa found Dakota even in the hospital.

Dakota opening his stocking.

Doug and Vicki of course brought us plenty of Christmas goodies as well.

 The cutest thing was a couple days before Christmas this cute boy that had been here for a brain injury brought Dakota a present because he felt bad for the kids that had to stay there on Christmas day because he was getting to go home. His cute mom peeked in our room to see what Dakota liked and they got him a Toy Story alien guy. It was so cute and sweet of them and brought with it the special Christmas spirit!
Giving Dakota his present all wrapped and everything.

Christmas day was a really hard day for Zach and I. It wasn't even because it was Christmas it was just one of those hard days where no matter how hard I tried the tears would not stop coming. We just miss our sweet little boy and hearing his cute voice. It is hard to stop thinking about what he was like and focusing on where we are at right now. That night Doug gave me a priesthood blessing and it helped so much. Sometimes you just need that added strength from your Heavenly Father to keep you going.

Overall, we are still doing well and just continuing to take it one day at a time. We are so grateful to have Dakota with us and grateful for this opportunity to slow down our busy lives and just love him to pieces. Things like this really put life into perspective and make you realize what is most important. My love and appreciation for Zach and Dakota, both of our families, and all of our friends has increased dramatically! Zach has been amazing through this all and I feel so blessed to have him by my side through all of this. I couldn't imagine doing this without him. I feel so blessed to have been given the gift of being Dakota's mom and although he is not the same little Dakota that he was right now, I feel even more blessed that he chose to stay here with us and let me be his mom for even longer here on this earth. Our children are truly a GIFT from God and we need to cherish them and treat them as He would want us to. 
It is really easy when things get tough to compare your life to others and, this is not fair. Why do we have to suffer through these trials while other people seem to have it so easy. This can bring you down and is very depressing. If you really look around you, especially here in the hospital, you will realize your life isn't that bad. We have been given SO many blessings and it is our choice whether we want to look at our blessings and find happiness, or dwell on our problems and be depressed. The choice is ours.

Moving on to what is happening...
So, we found out a couple days ago that we will be going home sometime early next week because he is not quite ready for their inpatient rehab program. When I first heard the news I was pretty upset and had a hard time hearing it but the more I have talked with the rehab team and the more I have come to understand the better I feel about it and am actually excited to get to take him home. (I mean it is great living in a hospital and all :) ) We are excited for Dakota to get to go home and be in a familiar environment without all the beeps and loudness of a hospital.

He is tolerating the amount of therapy very well and the therapists are very pleased at the improvement that they see. Even the doctors have said that they have seen lots of little improvements since he has been here. The doctors really wanted him to be able to stay for the inpatient rehab but the rehab team feels as though this is not the most beneficial time for him at this moment. To be in the rehab program they have to be able to handle three hours of therapy a day (which he has been doing very well) but they also have to be able to participate in some ways. They don't have to be fully competent and everything but they have to be more active then passive. It is also a political thing with insurance as well. Insurance doesn't have to pay for rehab so what they will pay for is only one rehab stay. So...if Dakota does not improve enough in the insurances eyes each week then they will quite paying for his rehab stay. Then Dakota's one shot of really intense rehab is gone. the rehab teams eyes...they don't want to ruin his one shot at this time while his brain is still recovering. They want him to have a little more time to recover so that when he is more ready they can maximize that time. We have come to find out that inoxic brain injury's (which is the fancy way of saying injury to the brain due to lack of oxygen) take a long time to recover from. everything else in our lives we just have to wait and see. It could be a few weeks or it could be a few months before he is ready, or worse case scenario not at all. It is completely unknown and is up to Dakota. (And of course Heavenly Father)

So when we go home he will still receive therapy (outpatient or in home...not sure yet) a few times a week but in reality we will be his biggest therapists. We will be working him like crazy helping him build back the strength in his body and trying to reprogram that brain. Right now there biggest goal is to help him with his muscle tone. His brain is sending messages to his muscles to tighten up so his muscles are so tight. You would not believe how strong this two year old boy really is. Some days I can't even bend his leg it is so tight. They have been giving him medication to help with his tone and just lots of movement.

To help his little feet and ankles they put casts around  his feet to help his ankles get back into better position because he wants to point his feet down.
There they are putting them on. It was hard work for them getting his feet to stay in that position. The little casts were so cute but yet so plain...we couldn't have that so....

Uncle Ryan saved the day and definitely spiced them up a bit!

Doing his amazing work! Dakota doesn't even know! :)

The finished product! Buzz and Woody...who else???

So they left those on for a few days and then they took them off and pushed his feet up even more and redid them again. So of course Uncle Ryan had to come back and do his work again...

Ryan and his beautiful assistant Lindsay!

You can't see the full affect from this angle but it is Jessie, Bullseye, Rex and the alien all from Toy Story. I know he is amazing isn't he. Everyone in the hospital has come to admire his work. So if you ever need any artwork done for your kid's room or anything...Ryan is your man. He even painted Dakota this cute picture of Buzz to go in his room.

Thanks Ry for all your hard work and time! I know Dakota loves it!

So, Monday they will take off these casts and are planning on giving him a dose of Botox in his calves and recasting to help the tone even more. Botox...who would of thought. Maybe they will give me a little dose for all of the wrinkles all this stress has been giving me! (That's a joke)

So the physical and occupational therapists started out just coming to the room and stretching him out but they have definitely gotten a lot more intense. They take him down to their gym and do all kinds of crazy stuff with him. The first time they did I was like oh my gosh...they are gonna kill him. (Not really but they are just very aggressive and as the mom it was hard to watch) But I know it is all good for him and even though he cries at moments it helps his little body so much and is helping his little brain to stop sending those bad messages to his muscles. They have to remind me that he isn't crying because it hurts, he just is easily agitated and it is hard work for him. (Lately he has been having those sad emotional moments very often. I can't even count how often. Many times it is when they are doing things he doesn't like, other times he just does it.  This is all a good sign although it is hard as his mom to see. It is part of the brain recovery and shows signs that he is definitely more alert. His cries are not his normal cries but rather he breaths really rapidly, with a sad face, some tears, and now starting to hear a little whine. It has been so fun to hear his voice again although it is so short. They only last a few seconds and then he is normally calm again. But he definitely lets you know he is upset.)

Sitting up in his bed...this was only the beginning.
How cute is he though?!

Making him lay on his tummy and work on holding his head up. He does have some head control that the therapists are so happy to see but he does get tired quick and likes to rest it. He is looking at himself in the mirror. His eyes are looking a lot better. They come down more (he used to have them up a lot) and he is starting to have moments where he gazes at us and things. He still doesn't consistently follow things with his eyes but a few times we have got him to follow for a short moment.

They have him starting to interact with things but they do all the work for his arms and hands. They have used these cars, a puzzle, and a ball.

They also help him to stand and feel his body. He has to start all from scratch like a newborn. Our first goal is to get him to have more head and trunk control, being able to hold his head up and trunk up. He will need to learn to hold his weight on all fours, roll over, crawl, and walk.
It is hard to go back from the active little boy he was to all of this, but the comforting thing is there is a chance he can do it all again. They are excited about the improvements that they are seeing and the doctor says it is optimistic to say that he will walk and talk again but they wouldn't say he won't be able to. Although the chances are definitely not in his favor, we will take any chance we can get. His brain is still recovering and he is still improving they just don't know at what point he will stop improving so we will just keep working and mostly just praying for God's help through this all. We know Dakota is trying hard and is working really hard through.

The speech therapist also sees him every day. She works more on the senses and trying to get responses from him. When she first worked with him she did not see any eye gazing but over time she has begun to see his eyes come down and gaze a little bit. She is so cute and calls Dakota her boyfriend and just works so well with him.

Letting him smell some peanut butter.

All the therapists here have been so great and have worked so well with Dakota. Leaving them will be the hardest part because they are seriously so amazing. But we will keep working hard so that he can come back and have that great chance to work with them again.

As you can see from some of the pictures Dakota is completely off the oxygen and is able to wear an artificial nose during the day over his trach to help filter some of the air and give him a little humidification (just like our nose does for our airway). They have switched his feeds to bullis (not sure if I spelled that right at all) feeds during the day which just means he gets fed three times a day for about fifteen minutes (regular meals like us) instead of consistent feeds all day long. Both of these things have been great because it has freed him up and allowed us to hold him easier and now we get to take him on walks in his wheelchair. Too bad it's too freezing outside to take him out but he seems to enjoy getting out of the room and going and exploring other parts of the hospital besides his room.

Getting all geared up and ready to go!

Soakin up some sun from the window.

Family walk.

Sorry this is always so long but this is my journal so I want to be able to remember all of the details and can hopefully show Dakota when he is older all the progress that he has made, how far he has come, and what a miracle he is. He truly is our little miracle boy and we love him to pieces. I am SO grateful for this chance to be his mom.

And last but not least...our continued thanks to all of you for your prayers, faith, comments, and strength! I know I always say this but we honestly couldn't do this without all of you!!! We hope you all had a very Merry Christmas and hope you all have a VERY happy New Year!!

Go Dakota Go!!!


  1. I am so glad to know Dakota is making progress! I love what Ryan did with his cast's! They look amazing! He is so talented! I'm so happy He is also breathing on his own! We love you guys soo sooo much! When you get to go home please let us know if there is anything that you need help with!

  2. I am so happy you posted pictures of your sweet little guy. I am so happy to hear is is making progress! I hope he continues to get better. your family is in our prayers.

  3. Tessie,
    He look so cute sitting up in bed. :) I'm so happy he is making progress. And how awesome that you get to bring him home. I know its not ideal but I bet he will love being home in a comfortable, familiar place and I bet he gets even stronger just because he is home.
    Our family just went through a similar experience with my Grandpa. I know its so different when its your baby but I can tell you the power of prayer and faith are an amazing thing.
    If you need ANYTHING please don't hesitate to call. Even if you just need me to run to the store or anything.
    As always, prayers and love coming at ya.

  4. Tessie,
    Wow Dakota is looking so good. I knew as soon as I saw the artwork Ryan must have helped. He's super talented. Dakota has got such a great family supporting him and cheering him on. That helps tons! He's a fighter. I am so happy he's breathing on his own and showing signs of progress! Wahoo!! Let me know if I can do anything. We love you guys and keep praying for you everyday all day :)

  5. Oh you guys!! It was so fun to see him sitting up in his bed! He is soooo cute. What an amazing little boy he is, it is so great that he is breathing on his own and you guys get to hold him more. I am sure that means a lot to you, we are continually cheering Dakota on from here, we pray for him and you guys daily. We admire your testimonies and strength, you guys are amazing and it strengthens us every time we get to read your updates.

    Such a frustrating battle with the insurance companies but we know you guys will be amazing therapist and just what little Dakota needs right now! I know you hear this from so many family and friends but please let us know when and how we can help! We love you guys, you are in our constant prayers!

  6. I'm so glad you are home (in Utah)! Primary Children's is an amazing place. Our oldest spent a few days there about 5 years ago.

    I am grateful for every improvement he's made and rejoice in reading about even the little things.

    Your are in our prayers!

  7. So glad Dakota's showing improvement and you guys are continuing to stay strong and have faith! You truly are an inspiration and have touched so many of us! Love the Toy Story art work on his casts!

    The Primary's staff and in home therapists are amazing! Our 3 year old (Tre Nye) has been working with Melanie (the speech therapist) for a couple years now for his dysphasia. She is our favorite!! And the home health therapists would come by daily to several times a week for about a month after he was released from his stay with cavitating pnemonia and was on his picc line. They also grew so attached and were wonderful!

    Merry Christmas and Happy New Year! We will keep you in our prayers and are looking forward to your next post showing even more improvement! :)

  8. Hi, Zach and Tessie. This is your cousin Ron Goodman, I'm your Moms first cousin. You new our son Chris who dated Ashley Graves. Any way we have been following Dakotas progress, and my wife Debbie and I include him in our prayers. We know our Heavenly Father is watching all of you. We hope and pray that things keep going well and even though you don't know us, you are family and we love you. May our Heavenly Father continue to bless your family with his love. We love you, Ron and Debbie

  9. I am so happy to hear that Dakota is making more progress each and every day! He looks so cute sitting up and all the pictures of him with the different therapists. You guys continue to amaze me with your strength and testimony and know that you are being blessed because of it. We love you guys so much and know that you will do great being home with him and being his personal therapists. It will be good time to bond with him with just the 3 of you. The casts that Ryan did are AMAZING. If you guys need anything, please let us know, we are here to help you whenever! We pray that things continue to go well and may heavenly father continue to bless you and your family. Keep smiling! Love you guys

  10. PS: this was from Heidi-- Im on Jordan's computer! :)

  11. This is Janelle but i just wanted to tell you i am glad he is doing better and we continue to pray for our sweet little Dakota to make it back to his self but if it be thy will to help us too. We love you guys so much and am glad to see progress. At home you will be able to do what ya want even though it might be tough. We are always thinking of you and continue to be amazed at you. Your faith and strength have given us strength.and built our testimony's. I say this every time but i know our Heavenly Father is with you and Dakota is a little fighter. We love you guys so much and will help in ways we can but know ya need time. Please let us know if there are other ways or ya need anything. Love ya

  12. We're all so happy for the progress that Dakota's making! And I think it's pretty obvious that uncle Ryan loves Dakota!!! That is so darling that he put the toy story characters on his cast...LOVE IT!!! Thanks again for the update, again our thoughts and prayers are with you and your family and the full recovery of Dakota. LOVE you guys so much!!!!!! Please don't hesitate to let us know if there is absolutely ANYTHING we can do for you!!!! LOVE YOU TONS, & TONS!!!!!

    The Lythgoe Family

  13. Thanks for updating Its good to hear of his improvements. He is the most adorable little guy! He has the most amazing parents to help him through this. i honestly believe he will continue to recover everyday! We love you guys! We will continue to think about and pray for you daily! Keep on fighting dakota! we know you can do it!!

  14. Eric and I talk all the time about how these things seem to happen in threes, so we hope this new year just brings happiness for you too, because you have got your HUGE three.

    Love the pictures you are posting what a diffrence a week and a few days make!! I can see little Dakota in the pictures and how hard he is working!!!

    Thanks again for the updates KEEP THEM COMING!!!

    Love you, and I am gratefull you are sharing this testimony building experiance with me:)

  15. Tessie-

    i know you don't know me very well. I ran the Ragnar race with you. (Katie's husband and my husband are cousins) I just wanted you to know that we will be praying for you and your sweet little Dakota. Hang in there. I am so sorry you have to go through this. The unknown is sooo hard. Hang in there.

  16. Z & Tessie
    That lil Dakota is such a tough lil Tiger. How Wonderful to hear about his progress. Not only is the care he is receiving GREAT but the LOVE he is recieving is even better. Kids are resilient and Dakota is proof of this!! How sweet of you to keep us all updated when you have a million other things to worry about...No need to apologize for not updating so soon:) Rys Cast Art is SO AWE-SOME & so fun. what a great Uncle!! You and Z will be amazing lil therapist to Dakota when your home, & you have all the support in the world! My warm thoughts are with your lil guy in hopes that he continues to get better each and every day!! *cheers to Dakota and his sweet smile!
    Hollie Pepe

  17. Zach and Tessie,
    I am so happy to hear that you all are doing well and will be heading home soon. Not a day goes by that someone dosen't mention Dakota. He is a special little boy with a wonderful family. Keep us updated and we are here if you need anything!

    The PICU at Maricopa Medical Center

  18. I have been thinking about Dakota and wondering how you all have been doing! I was so happy to see some updates and hear that you guys got to come back to Utah but most importantly that he was doing well! Even in the pictures you can tell he is looking better. :o) YEA!!! Go Dakota Go is right!!!! May Heavenly Father continue to bless all of you!!
    ps. Holy awesome drawings on the casts!!!!!!! They are AMAZING!!!! So fun!!

  19. SO glad that he is making progress! He is such a cute little guy! Dakota is in our prayers every night!

  20. Just yesterday I was thinking about you because I came across a book called "What to do about your brain-injured child" by Glenn Doman. His other books I've read have been great. How exciting for Dakota to be fussing sometimes! Anything is progress. Anyway, you are still in our prayers and thoughts! This is Annie's sister-in-law's sister again :)

  21. Tessie. You dont know me but I used live by zack and went to jr high with him. Ive been following your blog. Everytime I read it I cant help but cry and feel the spirit sooo strong. Its crazy. You and your family are in our prayers. My husband was paralized in a car accident 12 years ago and they told him he would never walk again. And he does so miracles do happen and you have for sure got a little miracle in your hands.. Good luck and stay.strong..

  22. Just wanted you to know we are thinking of Dakota and your entire family. We constantly have you in our prayers and thoughts. I come often to check on Dakota's progress so thank you for updating! Life is precious!

    -Nathan & Shelly Mauzy