the journey for Hasya

Thank you so much for your love and support as we journey to getting our sweet Hasya stronger and healthier.  I so appreciate all the notes I have received from those who are raising vision impaired children.  What a gift you all are to me in this season!

A few people wrote and asked me how we are doing with this latest diagnosis.  Are we disappointed?  Struggling to deal with another issue?  Goodness, no!  If there is one thing adoption has taught us, it is to expect the unexpected.  Nothing is ever a sure thing.  Adopting medically fragile children has taught us to love for today…and trust God for tomorrow.  The only thing we are feeling is pain for Hasya.  I cannot imagine this poor girl living in an unsafe environment and not being able to see.  So terrifying!

We truly are so thankful that we know about her poor vision.  Knowing that she cannot see changes many things for us here at home. We now know that touch is more important than ever.  We also know to be more intentional in using our voices and finding ways to let Hasya know that we love, love, love her without her seeing us.  It’s all good.

Since many of you have asked, I thought I would also use this post as an opportunity to update you all on a few other things regarding our precious oldest daughter.

The cast has been on her leg for almost seven weeks now.  Actually, she had a splint on for the first week, and then they put a cast on when we did the follow-up appointment.  We have an appointment with the orthopedic doctor this week.  It would be so wonderful if x-rays show a completely healed femur–but we trust the Lord in this too.  We do not want this cast off one day before her leg is completely and totally healed. She has adjusted amazingly well to having a big, heavy cast on her leg that goes all the way up to her waist.  Such a littler fighter is she!  I, of course, cannot wait to give her a real bath! 

Last week Hasya and I spent a long time visiting with various doctors at the cerebral palsy rehab clinic. It was very interesting.  The main concern for everyone who sees Hasya are her hips.  As I shared when she was in the hospital soon after coming home, she has bilateral hip dysplasia. The problem is that her hips are literally bone-on-bone. As we get her more weight bearing and even spending more and more time sitting in her wheelchair, pain is a concern. Once the cast is off, we will be able to gauge more clearly how she does and if she seems to be in pain. Hip surgery is definitely in the future–we are just not sure when.

Pain is also a big concern with her very stiff little body.  Thankfully, her doctors have put her on a medication to try and loosen some of the stiffness and give her some relief.  Time will tell if we can notice a difference. We feel so bad when she cries randomly (and often) and we have no idea why.  We assume it’s because of her joint pain.  Breaks my heart!

Another concern is Hasya’s scoliosis.  The very good news is that she definitely is growing and gaining weight.  It’s hard to tell how much weight she has gained in the past two months because of the big, heavy cast on her leg, but it’s easy to see that she is filling out beautifully.  With the guidance of our doctor, we quickly changed the nutrition drink that was originally given via her g-tube.  “Worse than a McDonald’s milkshake,” was his opinion of the choice of nourishment.  Hasya is now getting better nutrition than all of us!  Every day I blend her an awesome concoction in my Vitamix which is nourishing her body for the first time in her life.  Her calorie intake is being carefully monitored.  We cannot allow her body to grow too quickly.  It will put too much pressure on her  scoliosis.  

Very soon we will have Hasya fitted for a permanent wheelchair.  She needs a lot more support than the wheelchair she is in now provides (which is a loaner chair).  Her back and her hips need to be fully supported when she is in a sitting position. When Hasya first came home, she could tolerate sitting in her wheelchair for five minutes at a time, and then she would cry. These days she will happily sit in her chair for about two hours.  We put her wherever we are in the house so that she can always hear that her family is near. For the first few weeks, we let her sit in a reclined position.  These days she is tolerating sitting more and more upright.  These are all things we rejoice in.

Many have asked me if Hasya is eating by mouth again.  No, she isn’t.  It has been eight weeks of her refusing to eat anything by mouth.  Praise God for the g-tube!  We realize that the longer she goes without eating by mouth, the harder it is going to be for her to tolerate having food put in her mouth again.  For that reason we have started giving her just one or two teaspoons-full of food before every g-tube feed.  Hopefully she will start taking more by mouth.  We’re trusting the Lord in this too.

I also get asked a lot if she speaks at all.  No, Hasya is completely non-verbal.  No words….yet!

Hasya has astounded us with how well she is doing.  No words can express how sweet she is.  She loves to giggle and as soon as our hands are on her face she latches on and will not let us go.  She is learning that touch is a good thing.  And she is learning to trust us.  Given her past, that is huge. For her to know that she is safe, loved, and protected for the first time in her life makes me all teary.

Yes, the road to her healing is long.  And yes, some days are so tiring and challenging as we journey to getting her stronger.

BUT.  God has begun such a good work in her!  She has amazed us with her strength and her ability to endure.  For the first time in fifteen years, Hasya has hope–she has an opportunity to grow and become all who God has created her to be.

What an honor and a privilege that we get a front-row seat to see what God is going to do in her life!