Friday, December 30, 2016

Meet Malaki

 

In October of 2014 we brought our precious son home. He just turned four years old and weighed a whopping 19 pounds wearing size 18 month clothes. He was born in China and spent a lot of time in and out of hospitals needing an NJ tube to eat his first year of life. He was so tiny, nonverbal and frightened at this new family who came and took him away from everything he was familiar with.

In the year ahead we came to find out our son has an extremely rare genetic disorder. So rare that there is not another person known in the world with this disorder. The genetic specialists have no idea what his life will look like or his future. We know God knows and to us that is all that matters.

In the two years that our son has been with us he has undergone many surgeries on his airway. He also had a gtube placed so that we could feed him nutrition and calories to help him grow. On February 14, 2016 God woke me in the middle of the night to the sounds of Malaki struggling to breathe. He had known sleep apnea and we were in the process of getting him a pulse oxygen machine and bipap.  I picked him up, I held him, I changed his diaper and then wrapped him in a big blanket because his little body was so cold. I sat down and held him close to me rocking him in the chair. He started to have strider, he became unresponsive, and his color changed to grey blue. I woke my husband telling him to call an ambulance. Our son was taken to our local hospital and then transferred on to the Children's Hospital PICU an hour an a half away. It was a night I will NEVER forget.


 

The RT breathing for our son
 
 
                                                                   Being rushed to surgery


                                                          

                                                            Malaki on life support

For the next three months Malaki lived at the hospital. Often it was touch and go. Will he make it through the next hour? What do we try next? His body became bloated and swollen. Test after test was performed. Genetics was called in. The infectious disease team was called in. He ran high fevers at night but they would disappear during the day. He had another surgery on his airway. Placing a trach came up over and over again. All hours of the day and night we were meeting and trying to figure out what to do next. We prayed, we cried, we held his hand and told him we love him and he is so strong and so brave.


                                                           God brought healing to Malaki

Our son was taken into surgery to remove the vent but came back with it still in. More waiting. More praying. Days later the surgeon tried it again. It took a bit but Malaki started breathing on his own with the assistance of the bipap machine. We moved out of the PICU to the complex care floor. Each day was uncertain as he moved forward but then took steps back. One night I awoke to a room flooded with people as the nurse had to call in a code and Malaki had to be taken back to the PICU.

Malaki finally improved enough to go home on oxygen and bipap. We had some short visits home with return trips back to the hospital until finally our ENT specialist performed a never before procedure on his airway. After this was completed Malaki was on the vent again but after a few weeks of recovering he was able to come home and has been home for 7 months now.



We don't know what the future holds for Malaki but we know he is God's child and he is loved very much by many. He has touched so many lives with his huge heart and big hugs. Malaki has a way of making each person feel like they are so special.

                                                         The Lord thy God in the midst of thee mighty;
                                                         he will save, he will rejoice over thee with joy;
                                                         he will rest in his love, he will joy over thee with singing.
                                                                                    Zephaniah 3:17

                                                            



Wednesday, December 28, 2016

Where it All Began

What better day to start my blog then on the day it all began. 15 years ago my husband and I stood before our family, friends and God and committed to love one another till death due us part. We had no clue what was to come in the years ahead but we knew we did not want to go through life without each other. Best friends then and still best friends today. The years have only deepened our friendship and our love.

In the past 15 years there has been many joyous occasions but also pain, loss, and tears. We have seen dreams come true and dreams get crushed. We have reached the highest highs but also walked in some very low valleys. Our lives have not been different then any of yours in that way.

Our biggest Blessings have come in our children. Seven beautiful little miracles all with stories of their very own. Our two oldest boys grew in my tummy but by no means was it easy. Sickness, bed rest, hospital stays and near death labor brought our oldest into this world. He was then followed by his brother two years later in a less traumatic way. Our 3rd grew in my tummy for way too short of a time before Jesus took her home. The next five grew in the tummy of other women but God brought them to us in miraculous ways. Each so precious. Each a miracle.

Now to give you an example of our crazy life guess what we are doing on our 15th anniversary? The dishwasher repair man was suppose to show up this afternoon but here it is 5 p.m. and he is an hour away. He says it will take an hour to fix our machine. The one that has been sitting there for a month and a half waiting for the specific part to come in. Yes! Today of all days.

Welcome to our wonderful wouldn't change it for the world life!