Difficult times

The past couple of months have been very difficult to say the least.

First we found out about Harli's heart/lungs in May.  That news has been paralyzing at times.  It's overwhelming to see your child who looks healthy and be told that eventually she will develop symptoms that will only leave us with the option for a heart/lung transplant.  The magnitude of being told this is almost unbearable.  At times there's only tears and it feels like you can't breathe.

Our biggest hope is, of course, that God will heal her.  She is on medication and we are hopeful that it will bring the pressure down in her lungs enough that she can have open heart surgery to close the ASD & VSD. However, this is a gray area.  Not all specialists even agree that we should try this treatment (and we're consulting the top Dr's across the US).  Some argue that unless it totally reverses the Pulmonary Hypertension (which isn't likely to happen) that we shouldn't do anything.  Even if we can get her to a point where she can have the open heart surgery, there are definitely risks. Her lungs could rebound and cause her to be worse than if we did nothing.  But, as her parents we can't sit here and do nothing.  We have to choose the path that might offer hope instead of a certain destiny.

She has been on a small dose of medication since May and is reacting a little already.  We plan to be more aggressive with medication, however in June she had a seizure which has held up our plans.  The Dr. thinks she has a form of Epilepsy that she would outgrow during her teenage years, but isn't 100% so more testing is needed. Since June we have been trying to schedule a sedated MRI & overnight EEG for two months to hopefully get some answers.  This is quite a process for a child with a serious lung issue.  The local Anesthesiologists won't even consider sedating her.  She will have to have a special Cardiac Anesthesiology team.  She had some oxygen issues after her cath procedure that scared everyone pretty badly so we actually feel better knowing she will be in a hospital that is more equip to handle her medical conditions.  She also needs some additional dental work, after the extensive dental surgery she had last December, before we can move forward with her plan for possible heart/lung treatment.  We are working on this as well.

It's been months of going around and around with several Dr.'s, Nurses, Dentists, etc.  It's exhausting.  And, I know this is only the start.  We will be traveling out of state to meet with many Dr.'s in the near future and the medical bills are already coming in like crazy.  Thank goodness she is still her happy, silly self!

Our other children have also been greatly impacted by the events over the past few months.  We are trying to move on as normal, but it's taking a toll.  We will continue to let our faith override our fear and always choose hope, but honestly it's been stressful for all of us.  We have lost a big support group through church and that has really hard.  We are so grateful to our friends that are sticking by us through this, we couldn't do it without you.

If we ever needed prayer, we need it now.  We are under so many attacks.  Please pray that we select the best Dr.'s and treatment plan to care for Harli as we move forward.  Pray that God's will is for her to be healed. The Dr.'s are going to make us decide which medications we want to try and how hard to push.  It's terrifying to have to make these kind of choices.  So much about her condition is unknown and there's no clear answers as to what will be best for her life in the long run.  There's no studies to prove that surgery is the best option.  But, as I mentioned before we have to try something that might offer hope.  We didn't adopt her to give her a life where we just wait for symptoms to appear and get bad enough for a double transplant. We adopted her to see her life full of promise and hope!

On the adoption front, we are now DTC (Dossier to China) which means in about four months we hope to bring Mia home forever!  With all of Harli's medical we decided that we needed to know more about Mia's medical.  We had requested a new MRI before taking her referral, but weren't granted one.  We decided to push for a new MRI again since Mia's was so old and actually received one this time.  However, we are having trouble getting Dr's to review the info and based on the report a few have mentioned that she could have a very serious, debilitating condition - that is not even close to the need she was listed with.  A condition that would be very difficult to manage...especially on top of Harli's medical.  Harli is very excited and asks about her mei mei daily and it's heartbreaking to hear that Mia's medical could be so bad.  We have decided to pay for a more formal review of her medical and we are awaiting their response.  We're praying that the Dr's will review the images we have and hope to get anything else they request so that we can get a true medical opinion.  A few Dr's have told us there's not enough info so we may need to request more before actually getting a solid idea of what's going on.  Please pray with us that she doesn't have this progressive diagnosis, we very much want to bring her home to our family and we are just heartbroken over this possible news.  We have to try to think positive and move forward.

Our fundraising has slowed way down as it's been so challenging to try to keep up with all the medical calls and appointments while fundraising.  We are trying to plan some more things and our Yankee Candle Fall Fundraiser is ready to go...if anyone is willing to sell for us - we would be so grateful!  We are setting up a Facebook page dedicated to bringing Mia home, I will share the FB page soon.  I think a friend is setting up a Caring Bridge page for those that want to follow Harli's medical.  I will use the FB page for our online auction also which is coming up soon!   I've added a PayPal donate button to this site if you feel inclined to make a donation towards our adoption and/or medical travel expenses.  Our insurance will not be covering any of the travel for Harli to see specialists out of state.  None of the local Dr's have experience with her heart/lung diagnosis so to optimize her future we must travel.  Please feel free to share both our blog and Facebook page with your family & friends if you feel led to help us!  Your prayers and support are very much appreciated.