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June 1, 2005

Welcome to Meghan’s latest update.  There have been a few changes since our last update.  We would like to share these things with you. 

With very little muscle tone and limited weight bearing activities, Meghan has very weak bones.  To help strengthen her bones, we had a custom “stander” made for her.  The stander allows her do weight bearing therapy to assist her in gaining bone mass.  Unfortunately and ironically, while in her stander, Meghan suffered a stress fracture in her Tibia (the bone just below her knee).  Because Meghan cannot communicate with us, she could not tell us that she was in excruciating pain from the break.  Because she cried and winced when we moved her leg, we thought her hips were bothering her.  After a phone consultation, we took Meghan to see her orthopedic specialist.  The doctor quickly deducted that the wincing was not caused by pain in Meghan’s hips, but from a broken leg. X-rays confirmed her conclusion. Meghan was given a soft cast and the bone healed beautifully in a few weeks.  Once again, we were all amazed at Meghan’s resiliency and ability to bounce back from adversity.

While there, the orthopedic physician informed us that Meghan’s scoliosis is getting worse.  Her back is curving in an “S” shape at approximately 15-20 degrees.  Meghan has been given a custom-made “TLSO” which is a soft, but firm, abdominal suit to wear at various times throughout the day.  This helps to straighten out her back and makes it easier for her to take full breaths.  Ortho also informed us that both of Meghan’s hips are coming out the hip socket.  Thus, the bone mass that make up her hip sockets are not growing properly nor are forming a correct hip socket.  The cause, once again, is muscle weakness.  The muscles help keep our joints in place--which allow our joints to grow properly.  Because of her extremely low muscle tone, her hip joints are not growing properly.  We were told that she may need surgery to correct her joint structure by the time she turns 5-7 years old.  We hope and pray she will not need that surgery because it seems very invasive and painful.

Every few months Meghan visits a team of University of Michigan physicians that make up “vent clinic”.  Vent clinic is a terrific U of M Health Systems innovation in which ventilator dependent children are taken to one room in the clinic and one by one, each of the physicians (pulmonary, rehab, neurology, dietician, etc.,) come to see the vented patients.  This saves us the time and frustration of going to various appointments intermittently.  Meghan attended vent clinic earlier today.  The entire team was happy with Meghan’s growth and with the fact that she had not gotten any bacterial or viral infections over the winter.  The doctors made no major changes to Meghan’s ventilator settings or medication regimen. 

Meghan loves her new room.  Our family room has become her room.  It is a beautiful room with a large bow window, a sliding glass door (with a ramp to our patio to take Meghan on her walks), a wall mounted television and all of Meghan’s personal and medical supplies.  It is very comfortable for Meghan’s caregivers, as well.  We painted the walls two shades of purple.  You may ask, “Why purple?”  Well, there are two reasons:  First, all of our girls love purple!  Second, although we are not sure if Meghan can see or not, we assume that she can see.  Because of this, we want to give Meghan something very colorful to see when she opens her eyes each day!  We send our heartfelt thanks to brothers Tom, Jim, Chuck, and Bob for their assistance with readying the room. . 

Meghan and our entire family love Meghan’s nurses dearly.  They have become a part of our family!  We want to thank each of them for caring for Meghan so tenderly.  With their permission, I will introduce each of them to you in the next update.  Ellen and I also appreciate my sisters, Carol and Liz, for helping so diligently with Meghan when we have gaps in nursing coverage.  Because Meghan needs hands on nursing care 24/7/365, Carol and Liz have learned how to care for Meghan and have been altruistic with their time and support—we couldn’t do it without either of them!

With the warmer weather, Meghan has been getting outside more frequently.  She loves the outdoors!  We take family walks, picnic on the patio, and play with Meghan in the back yard.  Because she has been more stable lately, we are looking forward to “venturing out” this summer.  That is, we plan on taking Meghan to the park, to visit with the cousins, and to the Salter cottage in the Irish Hills for some summer fun.  This is a huge step forward and I know Meghan, as well as Lauren, Michael and Shannon will enjoy it immensely!

Many of you are visiting babymeghan.org for the first time as a result of Meghan’s recent article in the Right To Life of Michigan News, written by Pam SherstadEllen and I want to thank Pam for the beautifully written article about Meghan, as well as Kathy Crombie, Barbara Listing and all the terrific people at Right To Life of Michigan for their selfless dedication to life issues.  In the article, Pam stated so wonderfully, “As members of the human family, we have a responsibility to care and love each other...There is a duty for the strong to defend the weak.  We must make the choice to respect all human life—no exceptions.”  As God’s family, we are called to protect, defend, and speak out for those that cannot speak for themselves.  Our family has been called by God, in a very special way, to live these words daily.  We ask that each of you continue to protect and defend all human life with your voices, actions and prayers.

Thank you for taking the time to visit Meghan’s website.  Please continue to pray for her and our entire family, as we call upon God to give us daily strength, peace and healing.  God bless you all.

Mike and Ellen Salter

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