

.. 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.
8 comments:
Thank you for sharing that post. You don't know me but that post and your faith inspire me in ways you can't imagine. I found your blog and have prayed for you since your sweet baby boy was born. It is so good to hear some of the details about how he is doing.
Nicole
Emily,
I am so thankful to read your post and realize that there are so very many things to be grateful for with Cohen. He is doing so wonderful for a little guy who wasn't supposed to make it here. I can only imagine how hard it is to do everything necessary in his care, and I ask God to give you the strength you need for each new day and to continue to bless you with the fruit of your efforts by seeing Cohen do new things each day. You are a wonderful mom and I will pray for your specific requests. Have a wonderful weekend.
Laurie in Ca.
Emily, Thank you for posting specific things that we can pray for. I am going to copy and paste to a word document so that I can print them out and mention these exact requests. So glad to be praying for these things. So thankful for Cohen! Much Love, Ashley
Oh Emily, tears are streaming down my face. What a lovely, lovely post. You brought back so many memories and fears from when Madeline was a baby. You also helped me realize where we are today. THANK YOU for this reminder. And I hope that you can look at my Madeline and have such great hope for Cohen. We have been where you've been and where you are today. I know we share this journey....
We are so thankful too.
I just read a blog yesterday that said she prefers not to use the term "special needs" but prefers "special purpose." I loved that! Our children definitely have a special purpose.
Hugs, Sara
Emily, what a great way to say all of this. What an answer to so many of our prayers this sweet boy is!
Will he be able to get RSV immunizations this winter?
connie
Oh my goodness! How wonderful to see all of this. I'm sure when they first told you "incompatible with life" that they encouraged you to terminate your pregnancy. Thank you Jesus, that you are Christians and that in spite of the difficult time you had through the rest of your pregnancy that, doing that was NEVER an option for you & Chris. How truly beautiful to see these two brothers & to know that God does have a special purpose for both boys lives.
Will continue to pray for you and the family. Hope Cohen is feeling better and will be able to have his surgery.
God Bless, -Gail
Beautiful, beautiful post! I adore your sweet and amazing family. Thank you for letting me be a part of Cohen's life!
You may feel it just scratches the surface of your life, but please know that your words gave me goosebumps and moved me to thank God for all of His blessings. We're thrilled to be a part of those praying for all for McGowans, especially for Cohen's continual growth. So happy to for each of you - we're still praying!
Anne and Bradley Smith
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