How is it mid-December?!

Well December came and the Christmas craziness began. It took me a week to get the tree up and the house decorated (I put up a LOT of decorations.). Graham is doing very well. We got him off all the narcotics after 2 weeks, and then he was on just tylenol for a week, and now he is on nothing. He has mostly to returned his normal self, which includes sleeping through the night!!! His incision is healing nicely but the dissolvable stitches still haven't dissolved. He has his first physical therapy session next Thursday! We are so grateful that he is doing well and are looking forward to celebrating Christmas with our families.

Here are a few pics from the last few weeks:

This is how Graham spent a good portion of his hospital stay. Miserable and being wheeled around.

This was a rarity and I didn't even get to see it. Thank you Jesus, for even one smile!

   Sleep! There was at least some sleep.

Highly medicated baby trying to stay awake for a story.

 The incision.

  Glad to be home!

Thanksgiving with Matt's family in Shallotte.

Matt's birthday!

Thrilled about the Christmas tree (or his blocks).

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:

Baby and Dog Love

The last couple of posts have been quite serious. This will lighten things up a bit! Graham is starting to really notice Jet and enjoy interacting with him.

Health Update

One Year Pediatrician Appointment
Last Tuesday Graham had his one year pediatrician appointment. He got four shots, including the flu shot, and a finger prick. They always do the shots last but the nurse wanted to do the finger prick before the doctor came in so they could be running the iron test and I just knew Graham would lose his mind. He did not wince nor whimper for the finger prick! I couldn't believe it. he just sat there and stared at the nurse while she squeezed his finger to get a few drops of blood. Then when the doctor came in he screamed while he listened to his heart and looked in his ears. Go figure. He weighed 17lbs 10oz (4%), was 28.6 inches long (10%), and his head circumference was 48cm (93%). He has barely gained weight since his 9 month appointment and his head is huge, but the doctor wasn't concerned about either. The cardiologist decided Graham doesn't need the synagis shots to protect against RSV this year, so that is a relief. Last year he had them monthly October - February and they are expensive.

The pediatrician finally referred us to Child Development Services Agency for evaluation and possible therapy. Graham has global developmental delays and possible speech delays. He probably should have been therapy for months now, but none of his doctors have really been able to determine why he is behind and if he needed it. I am glad to finally be going down this route because I want to see Graham improve.

MRI
Graham had a sedated MRI last Thursday. Matt was out of town for work so my mom came up to be there with us. It was a long day which started with a phone call informing me that we were supposed to be at the hospital at 6am and not 8am and then crazy traffic because of the rain. Graham did great. Even though we got bumped Graham remained content without eating and we still made the neurosurgeon appointment. The MRI looked about the same as the one done in May but the doctor wants to go ahead with surgery. She was stressing how vulnerable Graham is to trauma in his current state. If he were to experience serious whip lash his spinal cord could be severely injured. So Graham will have surgery on his spine on November 15. 

Cardiologist Appointment
Today Graham went to the cardiologist for the first time since April. They did an echo while Graham screamed in my lap. We both had ultrasound gel all over us! His heart looks fine and we don't have to go back for a year! Praise the Lord.

My poor guy has been a trooper this past week! He has bruised thighs from the shots and bruised hand and foot from IVs for the MRI but he is doing well. I am watching him sleep on the monitor as I write this and I am just so thankful for him and love him so much!

Delight in hardships?

I am excited to see our baby boy turn one and yet I am also burdened about his delayed development and the health issues he still has to face. Turning one is quite a milestone, but most babies are sitting up, crawling, pulling up and talking by their first birthday. Most days I do not stress over these things, but as time goes on and Graham continues to make little progress, and when milestones like first birthdays roll around, I cannot help but ponder these things. 

I know and believe all the verses in the Bible about suffering. Romans 8:28 says that God works all things for the good of those who love him. I know that God is sovereign and nothing happens in this life that He doesn’t cause or allow (1 Chron. 29:11, Is. 44:6-8). I know that suffering is a direct result of sin, a fallen broken world. That suffering points us to Christ and makes our hearts long for His return. That people face trials so God’s glory may be seen (John 9:3). I know that suffering builds my faith (1 Peter 1:6-7). The one scripture on suffering and trials that I am wrestling with is 2 Corinthians 12:9-10. 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I believe that God’s grace is sufficient for me. My issue here is “more gladly” and “delight”.  Delight? Are you serious, Paul? Paul knew suffering well so it is no small thing for him to say this. I can accept hardship from God (Job 2:10, Ecc. 7:13-14) and I can recognize it will turn out for my “good,” even God’s definition of good… but I am having trouble delighting in it. 

There is a wonderful, faithful woman that I know from church that has gone through a separation and divorce while pregnant with their second child. Now her husband has returned to the Lord and they are dating again. To God be the Glory. She has said that she is glad that she went through that because of the strengthening of her relationship with the Lord. Wow.

Well, I guess the Lord still has some things to teach me because I struggle with being glad that Graham was born with a heart condition, that we almost lost him at 7 weeks old, that had surgery at 5.5 months, that he also has a spine issue requiring surgery, and that he is so behind developmentally. Perhaps I get a bye because it is actually my child who is enduring the suffering and it feels wrong to delight in another’s suffering? Or perhaps it is difficult to delight in the midst of the trial, and on the other side I will be able to look back and be glad? I once read an incredible word by John Piper titled "Don't waste your cancer". I pray that I will not waste these hardships. Would you join me in praying that Matt and I would pursue the Lord and His Word and opportunities to glorify Him during this hardship, so that one day I might learn to delight in hardship?

I do know that the Lord has been very near to us since Graham’s birth, that I pray now more than ever before, that God’s Word is precious to me, that I tear up every Sunday during praise and worship because the words seem so much more real. I do delight in those things. I pray that I will learn whatever the Lord is trying to teach me. I pray that one day Graham will look back on all that the Lord has done for him and he will give his life to the Lord. I pray for others who know much worse suffering than I. I pray for the Lord’s return so that there will be no more tears and no more pain. Come Lord Jesus, come.

Happy First Birthday!

We celebrated Graham's first birthday last week. We had a party on Saturday with lots of friends and family.  Thanks everybody for helping to make Graham's birthday special! Thank you, Lord, for the gift of our son and getting us through his first year. What a year it has been!

 Here is the party invitation. I enjoyed creating something that wasn't for work!

The cake and cupcake for Graham, from Lowe's.

Graham wasn't too into the cake idea. He skipped his morning nap so he wasn't really into anything except mommy holding him. Oh well.

 This balloon wreathe took 2 trips back to walmart for more balloons. I really should limit my creative ventures to the computer, but I did manage to finish the wreathe and make a few banners and swirly ceiling decorations (but of course I printed outlines that I made on the computer and then cut, no free handing here).

All 12 months. I may repost these pics individually so we can all reminisce. 

I didn't get many pictures of the party guests. But you know who you are... thanks for coming! I did get this pick of Matt's long time friend, Chris and his son Wilson (which is Graham's middle name) who drove up from Shelby.

Mommy and daddy got him a walker for his birthday! He likes the toys on it but hasn't really figured out its true purpose yet.

The gifts. Wowzer! 

Myrtle Beach Trip with Laneys - Pictures!

The Laneys all went down to Myrtle Beach for a few days the week of Labor Day. Even Robin and Nathan and Noah came down from Boston. We had lots of fun at the beach and the pool. Here are a few pictures.

(Why can't blogger rotate pictures? So annoying!)

 

Graham liked the lazy river! One advantage to him not being mobile yet, is he is content to do things like this.

Matt and I stayed a few days after his family left. We ate at a restaurant named after Graham. The food was great too.

Melanie had the grandkids pictures taken at a studio. Graham was mostly miserable during the photo shoot but we got a few decent ones.