Friday, July 28, 2006

Doing Well!



After a week full of meeting with doctors, nutritionists, genetecists, etc., so far Ella is doing great. More and more we are seeing bits of her big brother in her - sans the sideburns & big feet, of course! [picture of Matthew at 5 days old] She is sleeping well, though we are having to wake her every 3-4 hours at night to feed her...otherwise she might sleep longer. That is and will be the protocol for the next 6 months - and after that we may be able to begin to extend that time some (and allow dad and [mainly] mom a little more sleep!).

The feeding is going very well - we give her about 3/4 ounce of a mixture of formula / Polycose (carbohydrate supplement) / ProViMin (increased protein supplement) and then she goes to Robin for the remainder of her feeding. She is also taking L-Carnitine (liquid oral supplement) every 8 hours. As breast milk alone is about 45% fat, the thought of the nutritionist at Emory is that by taking the formula mixture - it reduces the amount of fat to about 30-35% of her total caloric intake (which is really what all of us should be doing!). As MCAD patients cannot properly break down their own body fats, this will help ensure that she doesn't get too much and to that point. Regarding the L-Carnitine, although it is naturally made within the body, supplementation helps the body's metabolism run smoothly and is useful in preventing low blood sugar. It also assists in removing metabolic wastes from the cells so a buildup of toxins will not occur.

For times when she is sick (cold, fever, virus, etc.) and/or not eating, we were prescribed a glucose monitor to test her blood sugar - I opened the box to see how to use and am a little angst-ridden about having to stick her with that little needle "gun." I am certain, though, she is probably less frightened than me as she was stuck about 12-15 times the first 24 hours of her life and has had a multitude of labs done on her since then. If blood sugar is in fact low, we are to give her a liquid polycose solution OR a finger-full of cake icing (yes - cake icing) in her cheek to quickly boost her blood sugar and call the doctor immediately. From there, we will be given further directions and likely take her to the ER for an IV of glucose D10 (D5 is most common). All that said, the whole point is to avoid her body trying to break down stored fats for energy - as that is when she could enter into a crisis.

Thanks to everyone for their thoughts - hopefully the above gives you some more insight into Ella and the disorder. I am sure it will become 2nd nature in no time! Take care.

Sunday, July 23, 2006

Welcome Ella!




Ella Scott Salley was born July 18, 2006 at 5:45 PM. She weighed 6 lbs. 14 ounces and was 19 1/4 inches. Her mom, dad, and big brother (I am certain) are very proud of her.

Unfortunately, we found out yesterday that Ella has MCAD (www.savebabies.org/diseasedescriptions/mcadd.php) - the disorder that took Matthew's life . We head to Emory tomorrow for some follow-up labs and then Tuesday to Emory's clinic to meet with the doctors and geneticist. The positive thing is that this time we know about it and will be able to manage it for and with Ella.

Thanks to our friends and family have been extremely supportive and loving - giving flowers, gifts, meals, and most appreciated - their time and love. We will keep you updated!

Tuesday, July 04, 2006

Thank You...

We have been meaning to send this for some time now - unfortunately like so many things have failed to get around to it. We began writing this several months ago and after re-reading/completing it, we were surprised at how difficult the task was. Partly because of how our emotions change often...partly because it stirred up many painful ones that we chose not to disturb - much like the delicate sediment at the bottom of a still pond. Though as difficult as it was, it's a pleasant reminder of how fortunate we are to have the love and support of you - friends and family alike - and the willingness of so many of you to travel this journey alongside us. So, with that said...

Beloved Friends and Family,

As you can imagine, the past 15 months have been incredibly challenging... seemingly experiencing the ultimate loss we could ever imagine facing in an entire lifetime. In the early morning hours of March 22 last year, we were plunged into a despair neither of us could have ever imagined. We immediately began to doubt God’s plan for our life – and that doubt and questions multiplied day after day as the reality of our loss set in and the sadness associated with that grew deeper. Questions such as, “God, where are you? Have you abandoned us? Do you really have a good and perfect plan for our lives?” Questions that many of us have asked before or will likely ask at some point in our lives.

At times our grief seemed (and, at times, still seems) unbearable – almost like the feeling of trying to catch your breath after having the wind knocked out of you – literally and often groaning and crying out to God asking for just a moment of relief from the ache. It’s during those desperate moments that we were and are grateful that “The Lord is close to the brokenhearted and saves those who are crushed in spirit” (Proverbs 34:18). And though, admittedly, we question God’s plan often, we are also thankful for the hope and promise of eternity and seeing Matthew again someday.

We are also tremendously thankful for all of YOU who’ve been so supportive during this time. In a telephone conversation two days before Matthew's passing, Robin shared with her best friend that the death of her son would be more than she could ever bear. During that conversation God must have said, “Robin, losing Matthew will be more than you and Matt can bear... alone, but I am going to provide you with the support of your family, friends and even strangers to get you both through this.” With that said, we will be forever indebted to all of you who have willingly and lovingly shared in our grieving.

Thank you for the abundance of flowers, cards and food that arrived when the news spread about our sudden and unexpected and loss. Thank you for the hundreds of you that came to Matt’s parents’ home for visitation and the following day to Matthew’s memorial service and internment. It was God’s strength and your overwhelming presence that carried us through those early days. Thank you for all of the kind gestures that continue to come to us abundantly over a year later.

We are so grateful to all those who have donated and continue to donate to Children’s Healthcare of Atlanta Foundation in Matthew’s memory. Over $6,000 has been given in his honor and people continue to remember him through gifts. Not only are Matt and I appreciative that you are helping us keep Matthew’s memory alive through your donations, but we are confident that the families' children whose lives will be prolonged because of your generosity will be especially thankful. Not only have gifts been made as mentioned above, but monies were also given to the Medical College of Georgia Children’s Hospital, Gideon Bibles have been donated, trees have been planted, fish scale plaques created at the Georgia Aquarium, awareness bracelets for Newborn Screening have been purchased, a magnificent portrait of Matthew painted, and over 200 luminaries placed along the streets of our neighborhood on his 2nd birthday – all done in memory of Matthew. We are very proud of our son’s life and cannot thank you enough!

In closing, we thank each and every one of you who continue to think of us and pray for our strength as we persist in this life that seems to rapidly move forward. Although the pain of missing Matthew will never go away and no one can replace him, we have hope for the future and are looking forward to a fulfilling life. We cannot imagine not having known Matthew – and to God and for that, we are so grateful.

With much love,
Matt & Robin


“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future” ~Jeremiah 29:11


“He tends to his flock like a shepherd; He gathers the lambs in His arms and carries them close to his Heart” ~Isaiah 40:11


"We miss our son. Every day that passes reminds us of what he might have been, or what he could have done. Our disappointment in not sharing his life, however, is overshadowed by the promises of God’s Word. To become more like Christ has become our singular desire until the day of our reunion with our son in Heaven. On that day we will fall down and worship the Lord together with him - forever. What a glorious hope that is! What a glorious hope every parent should have after the death of a young child. The hope of Heaven is truly glorious hope!” ~John MacArthur: Safe In the Arms of God