School Scholarships

Sonnet's homecoming has been a wonderful thing, and I count it one of my biggest joys that I get to be her mama. And with her coming I have had to admit that I can't do it all. She is a needy little darling and I finally admitted this spring that I really do need some help. Tough thing to admit, and even tougher to ask for it.

A friend told me about a scholarship available to special needs children in Ohio who do not attend the public schools. It is funded by their district school, and provides educational help for them that the schools would normally be required to give.

I spent days filling out paperwork, and we've had home visits from all sorts of professionals to determine the kids' eligibility. Today was the culmination of all of that work as I went to hear our ETR (Extended Team Report) and receive our IEPs (Individual Educational Plans.) With these official documents I was ready and submitted our scholarship applications today.

What will this mean for us? Our hope is to have an aide for our classroom so ALL the kids are getting their fair shake of time and attention. There are so many things I WANT to accomplish, but am just one person. I'm not sure how I am going to feel about sharing my house and school day with another person, but am praying we will have a really understanding and compassionate person assigned to us.

I will admit that I was somewhat terrified going into the IEP process but I've been so, so impressed with our local school district. They went above and beyond to push the evaluations and paperwork to ensure we would meet our application deadline of April 15. AND a mama can tell when people genuinely LIKE her kids. I believe their heart is in their job.

So WHY the pig picture? When the speech therapist visited us she referred to our notes from private therapy that said Sonnet loved to work with this specific piggy bank in therapy. She asked us if we had one, and I told her I had been looking but hadn't been able to find one yet. (They WERE discontinued, I actually saw them again on Amazon just last week!) This happened a few weeks ago and I didn't figure she would give it another thought.

Fast forward - Sonnet's eyes have been a little "twitchy" at times the past few days and I've been concerned that she could lapse into seizure activity again. So, she went to the meeting with me today. Ok, I pretty much won't leave her with anyone on even just a usual day anyway. (Shrugs.)

I was so happy that Sonnet was with me so the therapist could see Sonnet's HUGE SMILE and piggy hugs and hear the squeals of delight upon getting this! It was super kind of the therapist to remember and bring this special gift for Sonnet. Thankful today for compassionate staff at our schools and special piggy friends!

Blog has gone private....

I've had a public blog since we began the adoption process with Abigail and Jennifer in the summer of 2012.  It was my hope to help others along the way in the confusing world of international adoptions.  It has also been a fun way to communicate with those who helped to get our kids home and wonder how we are all doing.  It has since evolved to encourage others with special needs kids.

Tonight I set my blog to PRIVATE.  Why?  I purchased a gait trainer for Sonnet from Ebay.  I was sent a size smaller than the posting specified and have been "in conversation" with the seller about a way to remedy this. 

Tonight she denied my request for a refund and actually responded to me mentioning that they had seen my "website" and all the kids we had adopted.  Honestly, it creeped me out major time that this person must have done a search to find my personal information. 

I don't know how long I will leave the blog set as private, but if you're here, "HI!"  Feel free to invite others who would benefit from some of the adoption specific information or just like to keep up with our sometimes crazy family.  Leave me a message with their name and email address -- messages are set to never publish without my pressing that magic publish button -- and I'll add them.

 Happy Valentine's Day!

We had a yummy time celebrating Valentine's Day at Graeter's. It was buy one get one sundae free day. Sonnet ate her entire specialty cake/ice cream sundae - it was a big one! We got the 1870 tower.

That is she ate it all except for the nuts which she spit out and threw on the floor. AND the cherry. LOL! She gave me the look that I've only gotten before with broccoli. Then said, "Ewwwwwww," and it joined the nuts on the floor. Sorry, Graeter's. I did clean up after her as best as I could with baby wipes.

 

Sonnet Update - New Diagnosis

Sonnet's health has improved so very much since she was discharged from the hospital in November.

Instead of lying on her back, she routinely sits herself up to play now.

She loved our Christmas activities, especially HER turn to add the ornament to the advent tree.

She can sit in a regular chair now.  And she has gained TEN POUNDS since she left the hospital!

She was one very, very sick little girl in the hospital and you may remember that they ran test after test after test in an attempt to get a diagnosis.  Most of the tests actually turned out fine, but the genetic testing results was not available until just this week. 

So often with my children who have really NO past medical records, there are so many tests that when the doctor suggests one more I don't really think that they are going to uncover any mysteries.  But this time they actually DID!  Sonnet has been diagnosed with a rare genetic condition - Guanidinoacetate Methyltransferase Deficiency (GAMT). GAMT is an autosomal recessive metabolic disorder that primarily affects the nervous system and muscles. It is the first observed disorder of creatine metabolism.

According to the Association for Creatine Deficiencies website, "Guanidinoacetate Methyltransferase Deficiency (GAMT) is a mutation in the GAMT gene that makes the enzyme that creates creatine, resulting in a shortage of creatine."

 

What is creatine anyway?  Creatine is a naturally-occurring amino acid (protein building block) that's found in meat and fish, and is also made by the human body in the liver, kidneys, and pancreas. It is converted into creatine phosphate or phosphocreatine and stored in the muscles, where it is used for energy.  Creatine is needed for many tissues in the body to be able to store and use energy properly. The effects of guanidinoacetate methyltransferase deficiency are most severe in organs and tissues that require large amounts of energy, such as the brain and muscles.  A shortage of creatine just doesn't allow for enough energy to support the brain and the muscles.  Thus this syndrome seems often misdiagnosed as Cerebral Palsy or mental deficits.

 

My research tells me that both of Sonnet's biological parents carried one copy of the mutated gene, but they likely had no symptoms.  She probably appeared "normal" at birth with symptoms showing later as she began to miss developmental milestones.

This diagnosis explains so much, especially the WHY to her sudden dramatic increase in seizures.  The good news is this condition can be improved.  Her doctor has ordered supplementation of  Creatine Monohydrate and L-ornithin, along with a vegetarian and low protein diet.  When this is implemented at a very young age the child has a good chance at totally reversing the syndrome.  Since Sonnet is seven-years-old her outlook isn't as good, but our physician is hopeful that we will see significant improvements in four key areas:

1. Seizures - perhaps to the point that she will not have to take her seizure medication once she obtains and maintains an adequate creatine level.

2. Cognitive ability - she likely has some permanent neurological damage, but adequate creatine levels should improve her ability to learn.

3. Muscles - we're hopeful that Sonnet ultimately won't need a wheelchair as her primary means of getting around.  Maybe she will require a walker, maybe she won't!  The original Cerebral Palsy diagnosis?  May not be at all applicable.

4. Behavior - interesting enough, what we were interpreting simply as "institutional behaviors" may in fact be a part of her syndrome.  So for those of you who have had your hair pulled, been scratched or slapped - as her creatine levels increase, these behaviors will hopefully decrease!

Sonnet will be closely followed by her doctors with blood tests and periodic specialized MRI spectroscopy of her brain to be sure her creatine levels are sufficient.  She will also see a metabolic dietician who will monitor her special diet.

We are thankful to live in a time where genetic research has allowed the discovery of these mutations and an effective treatment for many of them. We are also thankful that this was diagnosed fairly quickly - she's only been ours for six months.  Sonnet is a huge blessing to us, regardless of her "handicaps" but we are THRILLED at the prospect of improving her quality of life.

Time to VOTE!

As you know, I'm the "warrior" for the Hnilo family this year. They are adopting a little girl they are naming Everly.  Her story is similar to Sonnet's except even sadder.  When her previous prospective adoptive family arrived earlier this year they made the decision that her needs were just too great and returned her to her orphanage.  :(  The Hnilos are stepping out to get her home as quickly as possible.  They got the decision from USCIS (immigrations) that they agree her health needs are great and are expediting the adoption.  I'm committed to encourage them, pray for them, and raise funds as I'm able.  Here is a fun idea that you can all get involved in.

For months the adult sisters have been saying that Isaac should get to determine how HE wants his hair. We parents aren't so sure. He seems stuck on this anime style as seen in the drawing he created above! So we are putting it to a vote.

What do YOU think? Each dollar you contribute to the Hnilo family's FSP will "buy" you a vote. Simply contribute any dollar amount to their tax deductible account at http://reecesrainbow.org/112798/sponsorhnilo and then report back to this post to cast your ballot by commenting.

Isaac is on board and will comply with the vote. If he and the sisters "win" he gets to grow his hair long enough to style similar to his drawing and keep it that way for one month. If the parents win, he sticks to the status quo. We hope you will have fun with this fundraiser for the Hnilo family!

Remember each dollar is a vote, and every vote counts.   To participate donate by clicking on the link above or donate in the sidebar to Every's adoption.

UPDATED:  Isaac and his big sibs won the vote.  Stay tuned for his new do!

Sonnet gets SMOs

Sonnet got her first pair of SMOs (Supra-Malleolar Orthosis) yesterday.  They help to give her support while standing.

She was super impressed as you can see. She would rather throw them than wear them!

Happy Thanksgiving!

We are a very thankful people this year, for sure!  We celebrated with the big meal with Ethan's mom, our adult "kids" and grandkids last weekend, so today was a relaxed day at home with no big expectations.  In fact, Tikvah had requested our Thanksgiving meal be a la Charlie Brown style with popcorn, jelly beans and toast!

 

One fun thing we did today was to let Sonnet try out her Upsee.  We have had this for a couple of months, but due to the amount of seizures she had been having, we hadn't been able to let her try it out.  In case you don't know what this is, I'll explain.  First, the adult puts on the belt, then the child puts on a vest like harness.

The child's harness is attached to the adult's support belt.

And then both put on the sandals.  There is a small one and a large one hooked together for each side.

Sinch up the straps...

And you're ready to walk!

I was able to get a short video of Sonnet walking with her Upsee for the first time, but Blogger says the file is too large to upload.  However if you would like to see it, you can watch it on YouTube here https://youtu.be/k8aFBpe0Pr8

We hope you had a wonderful Thanksgiving also!