We got the results back from Chloe's stroke work-up genetic tests. They were all negative. She did not have a stroke in utero.
That's a positive thing, right?
I don't mean to be whiny, but I was a little disappointed. I wanted an answer. I wanted to know why Chloe has medical issues. I wanted to know for sure. I didn't want to keep wondering about it every day. If we knew that there was a genetic pre-cursor that caused her blood to have hypercoagulability, then I could stop blaming myself for maybe doing something wrong. AND the fix would be easy -- just take aspirin every day next time I'm pregnant.
Now we're back to square one with lots of questions and few answers.
I was feeling pretty negative about it all week, after getting the call last Friday. At the end of the day, though, it really is up to me if I keep feeling negative or I find the positive and focus on that.
Thankfully, I've been able to snap myself out of it and trust in the Lord. I know Chloe chose this life for herself and that she is a blessing to me. It is an honor to be her mother because she brings such a special spirit into our lives and is a constant reminder of what truly matters in life. I trust that the answers will come if we need them to progress. In the meantime, I have a renewed spirit to get Chloe progressing with her physical abilities. I think withdrawing from early intervention spurred me to take a greater responsibility. Instead of depending on the monthly visits, I'm doing more research, more exercises, more stretches, more swimming, more swinging, better eating habits, etc, etc. I also just have to remember that it is our LOVE that will truly help her succeed. Love NEVER fails.....
Although ABM would be my therapy of choice, I have decided to try another whirl at physical therapy, but this therapist is NDT certified (neuro development treatment) to work specifically with children who neurologic issues, such as cerebral palsy. We had our first visit this week, and are going to start going weekly....
She is such a cute lady and Chloe really likes her. I missed it by a millisecond, but she had Chloe sitting up without assistance for 10 second increments. Chloe was supporting herself with her arms and just loving it! I didn't even think to get my camera out because I was just enjoying watching her sooooo much! By the time I remembered to grab the camera and document Chloe's amazing achievement, she was tuckered out. You can kind of get the idea though!
We're also trying another alternative treatment. This weekend we're driving to see an astrophysicist in Montana, who tests energy fields around the body, then does something to correct the energy. He also developed a special water for NASA that he recommends, but doesn't require.
Now before you write me off as a complete lunatic for even considering this treatment, just know that I have met a young man with CP who could only roll over when he went to see this guy, then was sitting up three days later. It's now been six months and he's doing lots of amazing things, including standing without assistance and walking with assistance. If I hadn't met this boy and saw his dramatic improvement in person, I may not have believed it, so if you don't believe, I get it.
Also, the treatment is free if you can get to him. So I know he's not trying to scam us out of money. Basically, there's nothing to lose except a road trip to Montana.... and we get to see my brother's family, so we're truly out nothing! I'll let you know how it goes. I feel really positive about it, anyway.
17 comments:
Good for you Tara. I think having a child with special needs makes your skepticism fly out the window. If it can't hurt, there is no reason not to try it. Hope it helps and at the very least, that you have a fun trip to Montana.
You're definitely not a lunatic!!
I'm glad all of her blood work came back normal. That is always a good thing!!!
Can't wait to hear more about the alternative therapies. I love that stuff...
Oh no, I'm sorry about the tests. I know it would make things so much easier to KNOW what happened and why.
Hey, I don't think you're crazy for trying some alternative therapy, I say do whatever you think will work because you just never know!
I don't think you are a lunatic. You are and awesome Mama who will do WHATEVER it takes to give her child the best possible life. You're an inspiration!
I know what you mean about wanting an answer. That's how I was after my miscarriages. I had every test done possible and got no answer. I just wanted something, ya know? But the thing is, you don't always know the answer at the time. But there is one. maybe not a medical one, but definitely a reason, for everything.
I can't remember if I've asked you this yet, but have you tried acupuncture with Chloe? I swear by it. It honestly works miracles.
You are right we may never get an answer but, I am sure thankful we have that little girl!! You lunatic.
Good luck with the new treatments and have a fun trip to Montana!!! Sounds beautiful!! I will keep you guys in my thoughts and prayers while you explore these new options!!:) Love ya!
I'm very sorry that you did not get the answers you were seeking. *hugs* That is tough.
I am happy, however, to hear about her progress and about the potential finding this guy has. Amazing!
There is just so much information in this post! First - sitting unsupported! WOW! YEAH, Chloe! I'm glad the NDR consult went well and hope you find it to be a good (insurance covered - LOL!) therapy!
Interested in how MT goes, but I'm sure you'll keep us all up to date.
Sorry about the test results. I bet not knowing is hard, but it's good that you are getting past it. The feeling might come and go, but it probably would come and go even if you knew (I have a strange relationship with the cCMV diagnosis!).
I know not having the answers is so hard. So so hard. But I admire your attitude toward it. It may sound sound silly, but I learned something from this post tonight--we will be given answers if/when I need them.
Thanks, girl.
I think it is disappointing to not have the answer. But, on the upside, you are right that feeling upset doesn't give any answers itself. I think you are wise to try different types of therapies. You never know what will work! Enjoy the road trip!
If you're a lunatic, welll...we can be lunatics together :-) Our kids deserve us to turn over every possible stone to try and help them! And if this helps Chloe, you better believe we'll be following in your footsteps.
As for the diagnosis - I know exactly what happened to Nathan - and it doesn't really change anything. Sometimes part of the journey is letting go of "control" and wanting to know everything and just enjoying every day with all of the amazing gifts that life with our kids bring.
I'm hopeful for you and can't wait to see if it helps cute Chloe. Keep up the great work! xoxo
Hi Sweet Girl... Im sorry about the new with Chloe. I hate the waiting- the wondering- they why. Why can you just know, know so you can understand and know so you can help. I pray they can figure it out soon. Do they have a new direction they are going to go to figure it out? I believe now- more than ever- a Mother KNOWS. You know your Chloe and you know what she needs and what you should do. I think your amazing- your taking a stand and being a voice for your dauther. Thats the best thing any Mother could do. I think your amazing, wonderful- out of this world :) If you ever need anything- please oh please let me know! You have all helped us so much I would love to help you, somehow or someway. Love you.
Kendra
It is always so difficult not knowing...that has been our predicament for the last 8 years. We get a diagnosis...but still have no specific cause. We had the " she had a stroke in utero" but still no why. It stinks not knowing...Know I am here for you both...and you do so much for Chloe...and like our geneticist always says to me...you are a good mom...none of this is your fault".
If you need a place to stay in Boise on your road trip to Montana, let me know. Our house isn't big, but you guys are more than welcome! You could have your own room with a crib, a twin bed and another twin mattress on the floor. I love your loonieness and say whatever works!
Oh I can't wait to hear about this new treatment! I so hope it will be beneficial for chloe!
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