We are home and we slept!

Graham was released yesterday and it was a stressful day. Graham cried all day at the hospital and then had 2 stroller rides and 2 car rides after we got home. But Graham slept well last night for the first time since surgery! We were all grateful for some sleep.  This morning Graham ate breakfast and pooped and had a bath (first since surgery) and is now napping. Whew that baby likes being home. Praise The Lord for answering our prayers and giving Graham some relief. We just have to keep the pain and stomach meds coming (which is still a challenge)! Thank you for your prayers! 

Rough day

Graham has been mostly inconsolable all day. Not even holding him or riding in the wagon soothes him. We are giving him every constipation medicine known to man. He finally got an enema early afternoon and pooped some. Matt and I and all the grandparents are exhausted from walking with him and holding him and listening to him cry. Please pray for relief for Graham's constipation and for endurance for us as we care for him. Any strong backs to walk a crying baby through the halls are welcome. 

Out of the PICU

Graham got a quick scan MRI and moved to a regular room today. He has been quite fussy because he needs to poop. They have finally given him some medicine for it and in the meantime we have been riding him in a wagon! 

Post surgery update

I stayed with Graham last night and he slept some good stretches. He is getting morphine, Tylenol, and Valium. The plan for today is to get a quick scan MRI which he will not have to be sedated for, as long as radiation can figure out how to do this type of scan. The neurosurgeon ordered it but there has been lots of confusion about it. We should be moving from the PICU to a regular room today. And hopefully get Graham to eat some solid foods. 

This has been way less eventful than his heart surgery but we have had to see him cry more in pain because with the heart surgery they had him pretty well sedated but not this time. My voice is hoarse from singing to Graham to settle him!

Thank you. Thank you. Thank you for your prayers. 

Out of surgery

Graham is out of surgery and everything went well. Praise The Lord!!! He is going to be in pain for a couple days so keep praying. 

Spine Surgery Tomorrow

I took this picture today. I love this sweet boy so much!

Graham is having surgery tomorrow at 7:45am. We have to be at Duke at 6:15am. We are so thankful for our parents that will be there with us and for many more friends and family that will be praying for us. 

Details of surgery:  Here is a brief history and explanation of the surgery... After Graham's heart surgery in March his eyes never stopped bouncing after going through some withdrawal from one of the medicines he was on. We took him to an ophthalmologist in May and she ordered an MRI. We found out that Graham's C1 vertebra is narrow and pressing into his spinal cord.  The neurosurgeon will remove the back part of the vertebra, which is still cartilage, and then treat the bone to prevent it from continuing to grow. He should be in the hospital 2-3 days.

Specific Prayer Requests:

• No complications during or after surgery
• Safe anesthesia
• Low pain during recovery
• That Graham will eat after surgery and that he will be able to breastfeed (since he doesn't take a bottle or sippy cup)
• For Matt and I to have energy and peace and wisdom in making decisions for Graham's care
• For compassionate and attentive nurses
• That Matt and I and our parents would take opportunities to encourage other families we meet in the hospital
• That the surgery will fix Graham's bouncy eyes (nystagmus)
• That Graham will need no future surgeries on his spine
• That Graham would make strides developmentally after surgery as he starts physical therapy

I don't always understand suffering or know how to pray. But I do know that the Lord is sovereign and He is good and besides Him I have nothing. In the Bible Jesus was teaching and his disciples said, "This is a hard teaching." And many of his followers turned away. Jesus turned to the 12 disciples and said, "You do not want to leave too, do you?" And Peter replied, "Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God." (John 6:60-68) Cling to Christ with me, won't you? Where else do we have to turn?

Ophthalmologist and CDSA Appointments

Graham went to see the ophthalmologist recently, a follow-up appointment that was scheduled when he first went in May. The doc didn't have anything new to say about Graham's nystagmus. She thanked me for sending her some videos of his eyes that she used in a training conference. Apparently everyone thought Graham was really cute and they were very excited to see a vertical nystagmus because it is less common than a horizontal nystagmus. Although, Graham's eyes bounce both ways at times. The ophthalmologist has never had a patient with spinal stenosis and a vertical nystagmas and so she is very interested to see if the nystagmus clears up after surgery. She nor the neurosurgeon really know if it will, but we are hopeful.

Graham also had an evaluation with the Children's Developmental Services Agency (CDSA) last week. I was worried that Graham might not be in a good mood b/c it was during his morning nap. But he actually went back to sleep at 7am when he woke and I nursed him and slept til 8:45, so he was ready to eat and play for the 9am appointment! He was very cooperative. Praise the Lord. Our CDSA case worker and a physical therapist came for the evaluation. They determined that he is developmental where a 5-6 month should be. They recommended starting him in physical therapy and also with a developmental therapist, which something through their own program to help with speech and other things. Hopefully we will have paperwork rolling and be ready to start some therapy after Graham is recovered from his surgery.

Spine surgery is on Friday, I will post some details and prayer requests later. Graham has a possible ear infection so we have him on antibiotics, we are hoping this will not interfere with surgery.

One Year Old

I am finally posting about Graham at one year old. He was just starting to sit up by himself when he turned one and is now sitting up to play for 10-15 minute stretches. He hasn't figured out how to get into the sitting position or how to lay back down yet.  He has had a few meals in highchairs in restaurants (but doesn't last if we are there for a long time). Graham had 12 teeth when he turned one and the 13th is now poking through! He is enjoying rolling around in the pack n play and is spending more time on his tummy when rolling around and some while sleeping. He has started refusing the spoon and only wants to eat what he can pick up himself. He is starting to become a better eater now that it is more fun! He loves peaches, pears, cheerios, goldfish, yogurt melts, pasta pickups, and carrots.

Here are pics from all 12 months: