Haven Leigh…one special little girl
It’s been a bit of a big day. Since Haven has been struggling with issues that do not appear to be directly related to her heart’s function, her care has been transferred to the Pediatric Critical Care team. This team of doctors will have a more wholistic approach to managing Haven’s recovery. We feel this is a good decision that has been made and look forward to having some fresh ideas come to the table.
Speaking of fresh ideas on the table…
This morning we met with the Pediatric Metabolism Doctor. He said to us, “I’m the guy they call when no body else can figure out what’s wrong.” This doctor apparently is the only Biochemical Geneticist in the state: a very smart man that is very good at what he does. Basically, his specialty lies in diagnosing and following patients with rare genetic disorders. We spoke with him at great length this morning about Haven, everything she has been through, and what role he will now be playing in this whole scene.Â
He believes that there is something beyond Haven’s already serious heart condition that is causing all of the issues that we have been dealing with for the past three months. Of course, it will take lots of genetic testing among other things to reach a conclusion, but she has definitely had an abnormal course. Unfortunately, solving genetic puzzles can takes lots of time, so we may not have an exact answer as soon as we may like, but at least we know that we will have an answer at some point.Â
The process works something like this: many tests are done, one at a time; results obtained from the test are like tiny pieces of a puzzle; as more and more tests results come back, we can see more and more of the big picture. Sometimes you can see the big picture before all the pieces are put in, sometimes you can’t. We actually already have a couple of pieces to the puzzle.Â
Firstly, the issues Haven has been struggling with lately are symptoms that the doctor would normally associate with certain classes of genetic disorders. Secondly, we received results from the first test taken that indicate a high probability of Haven having a muscular disorder. He gave us some examples, but since we don’t know for sure at this time, we’re not going to start any rumors. He has already adjusted several of her medications as well as her diet to try get her fluid retention and feedings to be more normalized.Â
At this point, if you are anything like us, you’ll just need to stop and take a big breath. We are most thankful that we will at some point be getting an answer to all the questions everyone has had about Haven’s not so stellar recovery thus far. It was a big deal to find out that our child would be born with a fatal heart condition, but we learned more about it, stood strong in our faith, and pressed on. Likewise, it was hard to find out that our daughter probably has a serious genetic condition as well. So, we will learn more about it, stand strong in our faith, and press on.Â
As always, once we know more, we will certainly share it with you all. Thank you so much for taking time out of your lives to think of and pray for us. This precious little girl is so special to us, and heart conditions & genetic disorders don’t effect that one bit. God’s strength is made perfect in our weakness.
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Posted in Recovery #1 | 8 Comments »
April 5th, 2007 at 6:29 am
Haven,Jeremey & Alison,
I continue to lift your names up to the God who knows all and will in His time reveal the purpose and plan that He has for your situation.
Continue to follow after Christ and He will lift you up higher than you’ve ever been before.
Please give Haven an extra kiss and hug from me.
Rejoice in the Lord for He is Risen and His loves endures forever.
Love Ya,
Marcia P.
April 5th, 2007 at 7:59 am
That couldn’t have been shared more appropriately. Well done.
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To the readers:
Jeremey, Alison, & Haven will need even more of our support in the days and years to come. Very big news has been handled very tactfully and gracefully today.
If anyone is looking for an outlet of grace and private ministry within the body of Christ, there can be no greater opportunity than this that we have in our lives.
Haven is a one in a million baby, which makes the family around her just as special.
Continue to support Haven and her parents as they press on with this life long journey testifying to God’s grace despite the circumstances.
No greater testimony can we have than this. God’s strength is perfect in our weakness; God’s grace is sufficient.
It is the least of us that are called to make known the ‘unsearchable riches of Christ’ and ‘to make all men see what is the fellowship of the mystery, which from the beginning of the world hath been hid in God, who created all things by Jesus Christ…’ Eph 3:8-9
Let’s not weary now in performing that which God has called us to do. Pray continually, communicate effectually, always in charity.
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We love you guys and are here to support you until Titus 2:13.
April 5th, 2007 at 9:07 am
We know Little Haven is really special to both of you but we also hope you know how very special she has become to us and to so many others who love the three of you. Love ‘n Prayers
April 5th, 2007 at 11:46 am
I am not very good with words, but I agree with all of the previous comments. I Love all three of you and will continue to pray for all of you. Give each other a hug and kiss for me.Love, Grandma M
April 5th, 2007 at 1:08 pm
Jeremey and Alison embrace each other, and hold that pose for a long moment. We love you and are praying for you.
Randy & Lori
April 5th, 2007 at 7:22 pm
Here we are, Maundy Thursday. What a day in history tomorrow will be. Christ’s ultimate sacrifice, a carnal man made from God’s own flesh, sent to allow us to enjoy the all the wonderful gifts God provides. Love, Joy, Peace, … Ahhh, Peace. The peace of heart that only comes from knowing Christ as our personal saviour. And SUNDAY!!! THEE biggest day for all God’s people everywhere!!! We celebrate not only Christ’s victory over death but that He lives in each of us, including Haven. Thank you Jesus for a life so precious, so pure, such a miracle from God’s own hand. And for the PEACE that comes from knowing you are with her night and day, and with her parents. We celebrate Haven’s first Easter knowing He died for her too! He lives in her and gives her strength, joy and ahh, peace. So be it, Amen.
April 5th, 2007 at 7:40 pm
Jeremy&Alison, I continue to pray for you all, and though Lillian has not suffered the severity that your daughter has, I know what you are going through,(she also suffers from a rare chromosome disorder) I can’t remember if you knew that. as always, your journal lifts me up and encourages me. My heart swells at the love you show of our Lord and the glory that WILL come from all of this,”and we know that all things work together for good to those that love the Lord and are called according to his purpose” As always you are all in my prayers.
April 6th, 2007 at 11:26 am
Haven Leigh, How special you are, Mom and Dad couldn’t have said it better. You definately are special to all of us and many more Baby Girl. You and your parents have made a difference in our lives in many ways. You all are a true blessing. Keep up the faith and know we love you all so much, and you are constantly in our thoughts and prayers.:)