.. as I sat in therapy today and also had Cohen's babynet review, I couldn't help but think back on that first therapy appointment and the first day babynet came to our house to assess Cohen's needs as he laid in a bassinet with oxygen tubes on his face... and I have spent much of the rest of the day thinking about how far we've come...
In this hectic life we've been living caught somewhere in between praising our God for Cohen's little life and clinging to him to get us through the hardships that come with a child with special needs, I want to be still and remember the wonderful things God has done for us... I want to reflect on where we've been and I want to look towards whats coming with open arms.. As much as I hate to admit it I can get bogged down in all the hardness of it all and want to recognize the blessings and give God the glory for all he has done..
It's also been a while since I have specifically mentioned current prayer request for Cohen....
Here goes..
Where we've come from... where we are(praises).... where we're going(prayers for Cohen's future)
* Sitting in a cold ultrasound room, tears streaming down our faces, hearing the words" incompatible with life"....... raising our sweet son........that he would stay healthy through this winter and need minimal medical attention
*While pregnant, Putting things in my cart our of the baby section, walking around the store a few times just to pretend for moment and then putting them back.....a completed and full nursery.....that we will be thankful daily for all that God has given us.
* 18 days of going back and forth to the hospital to visit Cohen in the NICU, no one knowing anything to tell us about what to expect.........214 days at home with us....... uncountable days ahead
* Barely getting to leave the NICU because he wouldn't ever finish his bottles......drinking more consistently and eating solids (even though he still hardly ever finishes his bottles :).....continue to eat well and move towards more solid foods
* Sitting in a NICU with beeping machines, nurses, doctors, wires, and other babies...rocking sweet Cohen in his own nursery.....that we would savor every moment.
*Saturation levels rising and falling and ending up on oxygen 24 hours a day after we came home...... oxygen every other night and no saturation dips since last spring.... complete weaning of oxygen
* Chaos of getting him into every possible doctor, therapy appointments moving all around, and daily phone calls for babysitters for Cort.....a routine for therapy and child care, and graduating from some of the frequent doctors appointments.... that we will continue to adjust to this new life and that Cohen's needs will be met by all of the care he is receiving
* Trouble breathing on tummy and unable to raise head..... lifting head up and breathing easier on tummy.... bearing weight on his arms while on his tummy and more ease in breathing so he can stay on his tummy longer
* refused to lay on side and would get very upset and uncomfortable on his side( after the first few weeks)...will play in side lying position and roll to his belly..... that he would do a full roll back to back or tummy to tummy.
* Struggled breathing if not kept very straight and supported, was not able to cradle hold for long.... can cradle hold more and trunk is getting stronger.... that he would continue to strengthen his lungs to handle different positions
* Grunts, cries, and struggles in sitting position... trunk muscles improving and breathing improving when in supported sitting position...that he would continue to strengthen his trunk and sit independently without any permanent curving in his spine and without trouble breathing
* Hated having his arms messed with or moved.... will grasp toys, bring to mouth, and manipulate them while lying on back and will grasp and bring to mouth while in a supported sitting position..... that he will continue to be able to use his muscles in his arms appropriately and that he would learn to use his arms without compromising his breathing so that he can reach out for things like toys and food
* Clinging to God.... Clinging to God... that we would always Cling to God
In reality, this post doesn't do justice to where we've been and where we are but it gives you a little glimpse. The road has been long, wonderful, hard, joyful, fearful, and hopeful...
and we are thankful.
