Baby Steps Forward
Haven has had a good couple of days. Mommy & Daddy have probably been more busy than Haven has. We have been meeting with doctors in order to devise a plan for more long-term care for Haven and her complex condition. We are also seeking other opinions to be able to better clarify what is presumed to be a Mitochondrial Disease (this is a type of metabolic condition which we have been trying to diagnose and find an answer for for some time now).Â
The meetings have gone well so far. The “trouble” is that Haven is literally a one-of-a-kind baby. Most doctors say they don’t know of a baby that has had both Hypoplastic Left Heart Syndrome AND a Mitochondrial Disease. Since she is such a unique and exceptional case, we are trying to find our way through literally uncharted territory. We are trying to get together with doctors who are willing to work with situations outside of the norm and who would be willing to think outside of the box to come up with possible treatments and solutions for a most complicated baby. Of course, an important part of that is a proper diagnosis of her unknown metabolic condition (which may not be able to be diagnosed).Â
As we continue to work with doctors, Haven has continued to tolerate her feedings well. She looks better each and every day. She is also getting lots of exercise and physical therapy and appears to be moving her limbs more on her own now. Thanks for all the comments and emails. We (including Haven) love to hear from you!Â
Posted in Recovery #1 | 5 Comments »
May 17th, 2007 at 6:18 am
Haven Leigh you are being prayed for by:
HERITAGE REFORMED CHURCH
Hudsonville Mighigan
May 17th, 2007 at 6:19 am
Dear family we have you in our prayers here at:
Kentwood Community Church – Kentwood Michigan
May 17th, 2007 at 6:54 am
You are not alone, many of us are praying for your family here at: DAYBREAK COMMUNITY CHURCH
Hudsonville – Michigan
May 17th, 2007 at 6:58 am
Our church is also thinking of your family and praying for you.
MESSIAH CHRISTIAN REFORMED CHURCH
Hudonville – Michigan
May 17th, 2007 at 11:02 am
So when do you graduate from medical school? 🙂
It’s so good you are keeping on top of things. Seems that Haven is quite the challenge for the doctors who are willing to, as you say, “work outside the norm and think outside the box.”
I’m happy to hear Haven is continuing to improve at a steady pace. That is very encouraging.
The pictures were adorable. Thank you for taking the time to post them. She looks very alert and like she’s thinking…’Mom & Dad, you just wait until I can talk & coo and let you know how much I love you too!’
Have a great day today.
Enjoy the day that the Lord has made.
As always,
Love & Prayers, Laurie