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.
Monday, October 14, 2013
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!
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!
Wednesday, October 9, 2013
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!
Wednesday, September 25, 2013
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.
MRI Scheduled and Thoughts on Surgery
We have scheduled another sedated MRI for Graham on October 10. We expect him to have surgery on his spine in October or November.
I had a nice long chat on the phone with the neurosurgeon about the timing of surgery. She said if you talk to 12 neurosurgeons, 6 would say go ahead and do the surgery and 6 would say wait until he presents symptoms. Apparently this condition is rarely found in babies simply because most babies don't have MRIs. Babies may have stenosis at the top of the spine but it would not be detected until they are older or until some type of trauma occurs to the spine.
The risk of having surgery while he is still under age 2 is that he may develop instability in his neck post-surgery. I am not real sure what that would mean... more surgery? therapy? The risk of waiting until he presents symptoms, meaning loss of use of arms and legs to some degree, is that he may not recover fully from said symptoms after surgery. The neurosurgeon is also not real sure whether Graham is symptomatic or not. He seems to have great use of arms and legs, but is very behind developmentally with his neck and core body. This may or may not be related to the stenosis. Also... I haven't gotten any clear answers on whether Graham's nystagmus (bouncy eyes) is caused by the stenosis and whether or not the nystagmus could be causing damage to his vision... which would be a reason to have surgery soon.
The neurosurgeon said that if it was her kid she would go ahead and have the surgery because she would worry about the kid experiencing some trauma to the neck as he got older and started walking and such. I guess that means Graham is vulnerable to trauma in his current condition, which has not been made real clear to us previously.
Matt and I continue to pray that the Lord would heal Graham and if He chooses not to that He would protect him and give us wisdom regarding surgery. Delaying surgery could mean waiting on the Lord to heal him. I know that sometimes we can move too quickly, not allowing the Lord to work. Like when Abraham slept with Hagar to produce the child that God had promised instead of waiting on the Lord to bless Sara with a child as He had planned. But I also know that the Lord has blessed us richly with great hospitals and doctors and that He works through them everyday to answer prayers for the sick.
I don't want to be like the guy drowning in the ocean who prays for the Lord to rescue him and a when a boat passes by he refuses to get on it because he says the Lord will save him. Well the Lord sent the boat to save him! I don't want to wait on the Lord to heal Graham when He is saying, I have given you the surgeon at Duke to heal Him, what are you waiting for! I'll be honest I get a little teary when I think about Graham having to have another surgery. Oh, Lord we need you to guide us!
I had a nice long chat on the phone with the neurosurgeon about the timing of surgery. She said if you talk to 12 neurosurgeons, 6 would say go ahead and do the surgery and 6 would say wait until he presents symptoms. Apparently this condition is rarely found in babies simply because most babies don't have MRIs. Babies may have stenosis at the top of the spine but it would not be detected until they are older or until some type of trauma occurs to the spine.
The risk of having surgery while he is still under age 2 is that he may develop instability in his neck post-surgery. I am not real sure what that would mean... more surgery? therapy? The risk of waiting until he presents symptoms, meaning loss of use of arms and legs to some degree, is that he may not recover fully from said symptoms after surgery. The neurosurgeon is also not real sure whether Graham is symptomatic or not. He seems to have great use of arms and legs, but is very behind developmentally with his neck and core body. This may or may not be related to the stenosis. Also... I haven't gotten any clear answers on whether Graham's nystagmus (bouncy eyes) is caused by the stenosis and whether or not the nystagmus could be causing damage to his vision... which would be a reason to have surgery soon.
The neurosurgeon said that if it was her kid she would go ahead and have the surgery because she would worry about the kid experiencing some trauma to the neck as he got older and started walking and such. I guess that means Graham is vulnerable to trauma in his current condition, which has not been made real clear to us previously.
Matt and I continue to pray that the Lord would heal Graham and if He chooses not to that He would protect him and give us wisdom regarding surgery. Delaying surgery could mean waiting on the Lord to heal him. I know that sometimes we can move too quickly, not allowing the Lord to work. Like when Abraham slept with Hagar to produce the child that God had promised instead of waiting on the Lord to bless Sara with a child as He had planned. But I also know that the Lord has blessed us richly with great hospitals and doctors and that He works through them everyday to answer prayers for the sick.
I don't want to be like the guy drowning in the ocean who prays for the Lord to rescue him and a when a boat passes by he refuses to get on it because he says the Lord will save him. Well the Lord sent the boat to save him! I don't want to wait on the Lord to heal Graham when He is saying, I have given you the surgeon at Duke to heal Him, what are you waiting for! I'll be honest I get a little teary when I think about Graham having to have another surgery. Oh, Lord we need you to guide us!
Wednesday, September 4, 2013
11 Months Old
Graham is 11 months old! I can't believe he is almost one! Graham is still holding his head pretty well and sitting supported. He is standing and bouncing on his legs some when held. We have restricted his diet to pears, peaches, and prunes for the last couple weeks to battle constipation and he has done much better. He is a happier eater since his tummy is hurting less. Graham still has 9 teeth, no new ones in the last couple of weeks.
(There's only one foam one in the set of foam letters!)
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