Overdue Update!

Sienna is a wonder as usual. The HBOT helped her cognition significantly and she gained head growth of almost a full inch. It took awhile to get back into her occupational and physical therapies. She is being serial casted to attempt to stretch her heel cords and get her feet to stay flat. (The thing is...it may work but growth will bring it back to square one essentially..)
I am not even sure the long term goal they are seeing with this one! I think that while her feet are flatter, the opportunity will be taken to try to teach her to walk? I sometimes have a hard time getting realistic, straight answers from her specialists. One of the problems is her skin is sensitive and she is having small areas of breakdown. I learned later this is common and at her next appointment I will be asking about equally effective casting options which allow for "breathing" time. The casting has helped correct her foot position a little as well and she has improved so I don't want to give up just yet! Hopeful it sticks when she needs week off for healing. :-/ Keeping surgery and muscle relaxers at bay for now.

My dear friends held a charity yard sale this weekend for us and one of the things that sold was traded for 6 sessions of Hippotherapy!! I am very excited and grateful for this because the insurance claimed they would not cover this wonderful therapy until she is 3. 


Here is a pic of Miss Sienna on a saddle at the yard sale this morning :-)

I am confident more Hyperbaric Oxygen Therapy or getting her to the Family Hope Center will produce the best results! As well as maintaining her nutrition regimen which can be costly but has had great results! I am working on these things for her. Thank you for your continued support and for keeping her in your prayers. :-) She inspires me every day. ♥

Keeping Hope Alive

So we have been home for a few weeks now and Sienna is continuing to show progress. Physical therapy is basically something I have had to continue here at home despite the extremely stressful situation we came home to. Her muscles which showed some improvement, have become a bit tight again and I think this is normal for a few reasons. One, we started with 60 treatments. Many children with her condition show greatest improvements that remain after 80-120 treatments. Every child varies. Two, getting her back into a routine and consistent therapy to continue her improvements has been slow going. An appointment is being scheduled to check for head growth in a few weeks to give the  HBOT therapy some more time to get going, as most significant improvements take some time to manifest, post therapy. She has already had some growth! At this appointment, we also plan to get a referral for continued hippotherapy as this was definitely helping her.

  Sienna at hippotherapy <3

 

As much help and love and support as we got for this initial round of HBOT, we fell short upon my return home and are in some trouble financially. I think I have been truly underestimating the financial impact her disability will continue to have. Books on the subject state that non insurance covered medical expenses can soar into the millions throughout the child's lifetime.


The reality is that insurance BARELY covers their own recommended therapies and appointments and anyone who truly seeks to give their child the absolute best quality of life through whatever means they deem necessary, whether it be proven alternative therapies, or nutrition, is straddled with a huge financial burden.

Please continue to share her story. Thank you all!

Progress...definite progress

HBOT works best in conjunction with other therapies and good nutrition. I have been doing stretches on Sienna to help lengthen her heel cords and we walk around daily. She is definitely getting proper nutrition and vitamins, and the hippotherapy is something she looks forward to. Today she gave her horse Kaiser a hug!

 

 It was so cute. She has made several cognitive gains, tries to talk more consistently, more focused and aware, makes a few signs now, and her legs are much less tight! There was also some head growth. Overall, huge progress for her and I am sure there will be more things, as most noticeable improvements come AFTER the base therapy block is complete. Depending on the level of results, more treatments are planned. Head growth is the most crucial goal for Sienna and that can take some time. I am pretty excited about her progress.
I will also say that it is important to know that not all HBOT centers are created equal by any means. I was led to the right one first and I am SO grateful for this. Susan and her family at Rapid Recovery Hyperbarics are wonderful, patient, and caring. Sienna and I couldn't be in better hands. We are on the right path and I appreciate all of the prayers, support, and love from everyone. Thank you for staying with us on this journey. More updates to come! ~Sienna Shines~

Rounding Second Base

As of today we are officially done with one third of the treatments planned for this round. Sienna has definitely begun to show signs that the treatment is doing what is intended. Soon I will create a page listing some of the studies about this treatment and others we will be trying. We are also going to start a therapy where she will get to ride on a horse in a special saddle which will maintain her foot position and help her with balance. This is a special program which Susan managed to get her in to at a Non-Profit ranch here in California! Should be able to get started next week and I am looking forward to it. I will post pics of that as well. :-)

Ways to Donate

So it was brought to my attention that of course not everyone likes to give credit card information online. So there is a new page with the address for those who would like to send checks or money orders. You can also use Pay Pal or the link on the right. Thank You all for the continued support and prayers!

http://www.kvoa.com/news/kristi-s-kids-sienna-needs-your-help/

http://www.kvoa.com/news/kristi-s-kids-sienna-needs-your-help/

Day 5

I have learned a lot here, in just this short week. One thing I learned and want to share is that no matter what anyone says to you about your child or loved one...there is always more. There is always another way. More options than just drugs, surgery, stasis, or death. Believe it. Ask questions, do research, and NEVER GIVE UP ON YOUR KIDS! YOU are their only advocates as parents and YOU can push past a person who tells you there is no hope and prove them wrong. Ok now that that is off my chest...we are doing well and Susan is just an amazing woman. I am so blessed to have found her and this center for Sienna. She is getting into everything and being quite charming as usual. :-) More updates to come! Here is a picture of her asleep in the chamber with me.

Day 1

Don't worry the post title does not mean I will post every day! Ha ha So we are here! We made it here last night after a kind of scary drive..lots of wind on the freeway is no fun. Sienna slept for a very long time and overall did well for the drive. This morning we went in and got a mini trial treatment. I am claustrophobic and it was kind of hard for me...but I can do anything for her!! She did not like the hood too much but she will get used to it. I did not have time to make video before we left as things were fairly chaotic but I can give a synopsis of things now. My biggest concern is her head size above all else. At this point at last measurement she was in the 5th percentile for her age. Measurements will be taken when we get back and hope for the best! As far as mobility goes, she can crawl, she can stand with some difficulty and mostly on her toes, she is overall very stiff in her lower extremities but also some in her arms. Movements are slower than an average two year old and less precise. She also still has trouble with table foods and does not say any sentences and very few words with no real consistency. Hopefully there will be reduced tightness and other improvements so we will see :-) Studies show that most improvements are seen AFTER the course of treatments so please dont expect me to say "shes walking!" tomorrow or next week because I probably wont. I have not only enormous faith in this path but also patience. She could definitely be worse off and I thank god every day that she is not. I will say that just because her condition is not as visually severe as some, it doesn't mean she doesn't deserve to have a prolonged life and get all the help she can. I miss my family. It was for the best to have them stay home and not endure daily treatments and travel but it is hard on all of us just the same. Luckily I can remain in contact and even see them when I want to. (of course it isn't really the same.) What did people do before the internet, smart phones, and Skype?? lol

Car Show!

There is going to be a Car Show and Raffle for Miss Sienna In Tucson this Friday! Here is the article my wonderful friends had posted in the paper. http://azstarnet.com/news/local/car-show-to-benefit-ailing-tucson-toddler/article_23122b7e-b0bf-11e1-9131-0019bb2963f4.html

It's Getting Closer!

Soon we will be heading to California for treatment for Sienna. There is still so much to do and barely enough funds to cover treatment. However I have faith things will come together in time.
I will be posting a video soon sort of showing her mobility and hopefully a very different video will be made in a few months. :-)

I am making lists and checking them twice. Meanwhile trying not to breakdown emotionally as I have not yet allowed myself to truly do since this all began five short months ago.

Sienna is just her sweet, precious self hanging out with mom as she shops, stresses, and plans.
I don't know too many babies who can handle a six hour stay at a benefit car wash without complaint but Sienna is one of them....

My friends have been truly amazing selflessly giving their time, money, and energy to this wonderful little girl and I am very appreciative. I have to say my faith in humanity has been restored through all of this and my perspective has changed on many things. <3

Sienna at the Car Wash

Here's how you can help!

Here is the Donation Site to get Sienna the therapy she needs. Cerebral Palsy is one thing but the Microcephaly is concerning and the hyperbaric therapy will definitely help her! Anything helps! Thank you so much everyone!

www.everribbon.com/siennashines

Staying strong..

Here is a video I made for Miss Sienna.

It has been very hard for me lately watching her struggle in therapy to do basic things that I always took for granted...

I think parents in general take their perfectly healthy walking talking running children for granted. Up until now, I am positive I have done this with my older two. It isn't even so much not appreciating all they are capable of and who they are, it is just something you don't think about until you watch a child struggle so much. It has been breaking my heart lately. Yes. She is making slow progress, but is still operating at an 11-12 month old level physically and possibly as low as 10-11 months cognitively. She is 20 months old now....( alittle over 1 and a 1/2 for those who hate the months thing )

Anyway...

I will be strong for her because she is very happy and very capable and so wonderful no matter what her issues are and I will always do everything I can to help her reach any goal she ever has.

I can't wait to start the hyperbaric therapy and continue to work with her. I know diligence will dramatically improve her condition.

Some current abilities

She has recognized and tried to say "kit cat" for awhile now. She has also been able to clap and give kisses for awhile as well. Some things that she can do now include brushes her hair (tries) haha. She also puts things in and out of a small purse which forces her to use both hands!

She tried to put Haley's shoe on her foot!!!! This is so cute!

CP study

One of the things I have been so very blessed to be a part of is a CP study. This study provides physical and occupational therapies FIVE days a week. This is huge as typical treatment approval covers maybe once a week sometimes every other week. In China, when a child is diagnosed with CP, both mom and child are hospitalized and undergo twelve weeks of this therapy. This study is going to look at two things. Can parents here in the states even do this and get their child there every day? and is it effective? How much progress do they make and how much do they retain after the study ends? She is in her fourth week and is doing quite well.

How she started out
At the beginning of therapy,during her evaluations, she had a very short attention span and immediately threw any toy placed in her hand. She had trouble sitting up straight and her lower back practically touched the floor. Her crawl is atypical meaning she sort of leads with one leg and scoots the other up to her only bearing weight on one side. Most of her actions favored her left side and her grasp was wide (not pincer grasp). Her ankles are very stiff and have a very hard time staying flat.

She progressed rather quickly and now her sitting position is much straighter, and she can kneel , and play with toys for longer periods of time. She has started to put blocks into buckets and within the first week she was handing blocks to me.

Although she is making progress, there is still a dismal prognosis and growth has slowed dramatically in height and head circumference.

The Hyperbaric treatment she needs is expected to produce the miraculous results that she truly needs.

Hope for Sienna

So as well as giving her nutrients to encourage brain growth, I have found after much research an innovative therapy called Hyperbaric Oxygen Therapy which has shown wonderful, positive results for children with everything from autism to brain injury. I found a place with a caring, experienced staff and  am looking forward to getting Sienna in for treatment.
The lovely thing I am discovering about mainstream medicine and insurance is that they barely want to pay for their own physicians let alone something considered to be "experimental".
Of course, I am not letting any of that stop me from doing what I feel and know in my heart is right for Sienna. The parent testimonials are amazing, and I can hardly wait to see how Sienna progresses in what may be her only hope for a prolonged life! (Children with Microcephaly have a sad prognosis as I mentioned before.) I have linked to info on these things. Feel free to look into it. <3

Introducing Sienna

Sienna is one of three wonderful children. Her older siblings couldn't be more thoughtful, helpful, and loving. Sienna loves to play with doors, kleenex, phones, some toys, and anything she isn't supposed to as with most babies! Haha She is happy, smart, and well, the light of our lives.

The Beginning
Shortly before her first birthday, the pediatrician began telling me to really work with her because she should be starting to stand/crawl/etc. At this point, I believed she was having trouble because of her weight. (My little chunky monkey!) (Before I continue, there are two pediatricians at the practice I take the children to. The one who saw her most of the time did not notice anything out of the ordinary. At six months, the second one saw her for the first time and referred her for an x-ray to check for Craniosynostosis due to small head size which came back negative. She then saw the other one again afterwards.) However, I began to notice her legs tremor and when held to stand, she could not get her feet flat and would automatically bend at the waist or lean far forward for support. Her muscles were very tight and suddenly concern grew. After a three month battle to re-instate insurance, she was seen by the second pediatrician who is now the only one I will take her to, and was referred to a neurologist.

Early Signs
Later on in this process, I realized that when her head size dropped from the 50th% at birth to the 20th% two weeks later and continued to decline, her pediatrician should have had red flags waving in his eyes. Because they were not, and how would I know?? she had to wait much longer than was necessary for treatment, diagnosis, and so on. I feel this is important because parents have to be extra diligent to avoid this.

What The Doctors Say
So after her MRI, the neurologist came in and basically drew me a crude picture of the brain and said simply, "She has Cerebral Palsy. Fairly severe. Certainly unexpected, here is a referral for some genetics testing. See you in a few months." Being hyperdiligent at this point, I requested all records from everyone, everywhere and began my own research. The long extravagant medical terminology found in the records and google became my only source of information. Countless hours have been spent researching studies, health information, therapies, and any and everything related to her condition. I even looked at her MRI images and compared them to pics online for reference...

The Reality
Although her condition seems dismal, the most concerning issue is the small head size also known as Microcephaly. This is when the head size is more than two standard deviations below the average head size for a child her age. In her case it is secondary and caused by the brain's failure to grow as expected. I however am on a mission to change that and feel progress is being made. The burning question of wether or not there is still room for her brain to grow, has been one that the doctors are making very difficult to answer. That is an entirely different can of worms...and will be saved for another time.
Parents-YOU are your child's ONLY and BEST advocate. Do NOT stop asking questions and never take no, can't, or impossible for answers. Nothing is impossible. Anything IS possible.