Friday, June 17, 2011

What a day!

Our day actually began at 12am! JT decided to wake up and play and talk and giggle at the stroke of 12. At first Jake and I thought "this is perfect! We can give him one last bottle and put him back to bed before his surgery." Not what JT had in mind. I gave JT his bottle and gently lay him back in bed, left his quiet room thinking "success!" Then as I lay my head on my pillow and close my sleepy eyes I hear it... JT laughing and talking and giggling. Loudly too. This went on for a few HOURS! At 4am I decided enough is enough, someone has to sleep in this house. So I went, got JT up out of bed and headed to the sofa so Jake could sleep. JT giggled and wiggled on my chest for a while and then finally found a resting spot at about 4:45am. The alarms went of at 6am for us to get up, dressed and out the door to the hospital. Not the night Jake and I were hoping for. But at least he was happy!!
At 6:30am I went into Ethan's room and gently woke him up. He looked at me with sleepy eyes and then gave me a HUGE grin! It made my morning. Then I asked if he was ready to go and spend the day at a friends house and he smiled even more. "yes please" he said as he climbed out of bed.
By 6:50am we were out the door and headed to drop Ethan off. Thankful for amazing friends who offer to help all the time we dropped E off. I didn't worry about him once, knowing he is in good hands, loving hands was just what I needed!
We arrived at the hospital at 8am and by 9:45 right on time JT was being put to sleep. They allowed me to get in a gown and hat thingy and go back with JT to the operating room. I held him and whispered in his ear as he lay struggling to get away from the sleepy gas mask. He screamed and tried to hold his breath but after only a few moments he was out. I gave him one last kiss, whispered "I love you" and I was back with Jake. Although this is the second time I have watched my little baby be put to sleep it still chokes me up. It's hard to hear "the normal" sounds he makes, see his little eyes half open and let go of his hand. Being a parent is hard, but doing that... ugh, it's just painful.
Jake and I headed to the waiting room where we sat and talked, played a game or two and just waited. After about 1.5 hrs. the Dr. came out and told us everything went well and that we could go and see him in about 20 minutes. I think that 20 minutes was longer than the entire 1.5 hrs!
Once we got back to the recovery room we could hear JT fussing. He had a wonderful nurse with him named Charlie. Charlie was so great. He allowed me to climb into JT's bed and just lay with him, hold him as best I could and just let him know that mommy and daddy were there. He had a fever of over 100 due to the anesthesia. They showed us his surgical site which was really hard for me to see. It took everything in me not to cry. I had to be strong. Jake didn't need two babies to care for. (lol) An hour later Jake was getting the discharge papers and car and I was getting JT ready to head home. We got him home, settled and in bed for what we hoped would be a nice long nap. I left and went to pick up Ethan and run some errands while JT napped. Sweetest moment - I got E in the car and the first thing he did was ask about JT! We talked about how JT has some ouchies (as we call them) and that he hurts. We talked about how we have to love him and help take care of him b/c he is going to be cranky for the next few days. When E got home he walked over, looked at JT and gave him a kiss. God sure knew what he was doing when he made Ethan! JT couldn't have a better big brother!!

Jake and I are prepared for a long night and a long day tomorrow. Our prayer is that the Lord will sustain our bodies for this adventure too. We also pray that Ethan who is a fantastic, loving and understanding 3 year old won't become jealous of the attention JT needs. The more than normal extra attention JT already needs.
God seriously blows my mind. It is only by his strength that I am sitting here writing this with a cheerful heart. Thankful for the incredible blessings we have in our lives. Thankful for my husband who is always there with me and for me. Thankful for my first born who has so much love and such a big heart. Thankful for JT. Who with all his challenges smiles and laughs and talks and giggles even after a painful surgery. God may give us challenges but He also gives us the strength, grace and cheerful heart to make it through. God is good!

Monday, June 6, 2011

Answers aren't always answers are they?

Today was yet another eye exam for JT. We are in the midst of considering changing Ophthalmologists. We do not care for the Dr. we have been seeing at Children's. He is cold and non communicative which doesn't really work for me. I have been trying to tell myself it isn't about me or the way I feel it's about JT and his care. This Dr. is a good Dr. but his lack of communication and warm fuzzies leave something to be desired. He is usually very short with his time and answers which as a mom makes it hard to trust him with one of my most blessed treasures! I told a friend the other day that I need him to care about my child! I need to know that my child matters and that he isn't just a "case".
So today we sought out another very well known and respected Dr. in the field. He was wonderful. He spoke with us, gave us answers and advice. He also told us that sticking with the Dr. we have is a good choice (although he too is a good choice and would be happy to have JT as a patient). He agreed with what we have been understanding from the previous Dr. and said he would do it the same way. The problem is he is SO FAR AWAY and I would have to sit in hrs. of traffic every 3mos to see him :-p
The other problem is he didn't give me the answers I was hoping for. I wanted a clear cut answer. Tell me what to do for my son and I will do it! But that isn't what happened. He told us that JT is unique. That we don't know what he sees and we won't for a time, until he can tell us. He said JT will in fact need surgery but not until his brain and eyes determine how they are going to work together. (when that is no one knows!) Although I am so grateful for this Dr., for his time and answers it's hard to sit here and not have any more clarity on the situation than I had before. I was so hopeful that this would be the answer. That we would FINALLY know what to do! But, no. God has a different plan! I guess I am still learning the "P" word - you know patience (said in a whisper. I don't pray for patience... it's too hard lol). So I sit, thankful for God's provision, blessings, comfort and lessons to be learned. I also sit prayerful. Prayerful for answers and for healing. Prayerful for my sons future.

Incredible Joys in the midst of a serious time

This morning would have been a GREAT morning to have gone back to bed and start the day over again. JT woke up early which means so did I. With very heavy eyes I climbed into the shower while Jake and JT cuddled in bed. I decided that this morning I needed some serious coffee and freshly made scones. I brewed the coffee, turned on the oven and made the scones. All was going well. JT was being fed, Jake was getting E up, scones were in the oven and I convinced Jake to stick around for a scone or two. Then the day really began. Ugh, I realized I never turned on the timer for the scones. Then while heating up JTs bottle I never actually turned on the bottle warmer. Something else happened which has escaped me at this point in time. Oh well. Needless to say, heading back to bed seemed like the best idea possible, sadly, not an option for today.
But as my day was quickly heading down hill I sat at the table with Ethan for some scones. Ethan has been bringing smile upon smile to my face. With his silly 3yr old ways and goofy sayings, his beautiful smile and even better giggle.
I sit here across from my oldest listening to my youngest in the baby monitor and I know how blessed I am. Today is going to be a hard day. JT has physical therapy, then lunch, maybe, prayrfully time for a nap then off to yet another eye exam. I am fairly certain the day is harder on me than on either of the boys but that's not the point. The point is that in this what could be stressful day I am incredibly blessed. I am SO happy. I have an amazing man as a husband. He listens to me, supports me and is there whenever I need him. How blessed can I be!?! Then my boys, my sweet wonderful boys. My cup overflows today. God is so good!!
It makes me sad to think that people don't think there is a God. How can you not? Yes things are challenging in this household. We had a premie by 3 mos. who has PVL and CP. He is 1.5 yrs old and he doesn't sit, crawl, walk, talk... but he is precious! God gives us the strength to make it through each day as it comes! God gives us peace when there is no explenation for it. God gives us hope for each day; hope that JT WILL sit, crawl, walk, talk. He protects us in ways we don't see or know. He brings me smiles and joys I didn't even know were there on crazy stressful days. God is real! Yes, bad things happen. God even tells us that "bad" things will happen to us but they are always used to bring us closer to Him if we trust him. Trust God and know what I know! My joy is real! My hope is real! My peace is real! I want you to know it too!!

Pray for today if you think of it. Thank God for the joys and blessings we have already received today and pray for JT's eye exam. Pray for wisdom and clarity for Jake and I to make the best decision for JT.

Wednesday, May 4, 2011

growing and growing!

Our boys are like weeds! I can't believe how they have grown! Ethan just turned 3 yesterday and the amount of joy he brings into our family is amazing. He is so bright and well spoken. He loves to run and his imagination gets me all the time. He is potty trained and anxious to begin school. "mommy, now I am three I can go to school." He is an incredible big brother to JT . He shares and gives him his binki. He helps feed JT and will even snuggle with him sometimes.
He is in no way our dare devil. He likes to have two feet planted on the ground. We had his birthday party at Cabin John park. A park in MD - a great park in MD that has a train ride and all. Which is perfect for our little Thomas man!
Ethan just makes me smile! (most of the time, he is a 3 yr old after all. lol)

JT is so tall he has made it onto his actual growth chart! weight and head are growing too but not at the rate of his height. He is so scrunched in his carseat and has to wait another 6 mos to turn around. CRAZY! His PT and speech are going really well and we are thankful for the services he receives. He still isn't sitting up or crawling but he LOVES to stand and walk around (with assistance). JT's smile can light up a room and his giggles are totally addictive!
Sitting here writing this I am just smiling at the gifts God has given us in our two amazing boys.

We have a very busy couple of months coming up and are praying for God's sustaining grace and mercy. This coming month JT will visit the neurologist, the urologist and the ophthalmologist. two of these appointments will determine if/when surgery will be done. We thankfully saw a new ophthalmologist at Children's. One who spoke to us and gave us answers. One who listened and took time to care for us... we are switching Dr.'s God is with us in all things. He has such amazing plans for JT and I am so privileged to be his mommy!!

Wednesday, February 23, 2011

What's new?

Hmm, it's been a while and tons of things have been going on but not much is new. JT is doing really really well right now. He is becoming a real character. He is going to be the class clown I think. He laughs at everything and his smile and laugh are infectious! He is eating table foods well, babbling like a champ and is really working on self feeding. He is a champ at cheerios. Half go on the floor and half in his mouth, but it's a true blessing and accomplishment!
Ethan is a riot! We have our terrible 2's kinda days but we also have days where I am blown away by his love and thoughtfulness.
This morning as Jake and I were laying in bed listening to Ethan crack himself up and chat away we both just started laughing. JT began to babble in his room too, it was delightful! Then all of the sudden Ethan screamed! You know, one of those screams! Jake and I jumped out of bed and ran into his room. Oh my sweet Ethan, my little (not so dare devil) boy had climbed out of his crib but once again couldn't figure out how to get back in or down onto the floor. He was stuck. Holding onto the side for dear life with is toes through the railings on his pillow. Jake and I were cracking up. "I just need to get down and play." is what Ethan said to us as we came tearing into his room.
These days, although filled with doctors appointments for JT and I, our house is filled with so much love and laughter. God has carried us through a fierce storm. Yes, we are still in a storm but when the wind stops blowing and the thunder and lighting get further away you appreciate that storm so much more. The storm that is still here but not so terrifying. We have always had peace but now it's a different peace. I wish I had words to explain it but I don't. I just know that through God's love and mercy we have come through a lot. We give Him all praise and glory. We are SO abundantly blessed and we are looking forward to the next season God has planned for us. Seems like it's a spring season for us... full of growth and warmth.

If you are still praying for us, please lift up JT's vision. He is still wearing a patch and glasses to the best of our ability. There is no discussion of surgery yet although every doctor seems to think it's going to happen.
Praise God for the growth and development we are seeing. JT's speech and feeding is going so well. Pray for his muscles. We would LOVE for JT to be able to sit up and play and crawl in the near future.

Thank you for traveling this journey with us.

Friday, January 14, 2011

the incredible Ethan

This blog has been so much about JT and me lately that I wanted to take a minute to share about the wonderful loving amazing incredible Ethan.
Ethan is 2.5 and he blows my mind! He is creative and loving. He is the most amazing big brother JT could ever have! He is a helper and a love. He always asks Jake and I if we want to play trains with him. He even asks JT to play with him sometimes. When Ethan asks if we want to play trains with him, what he means to say is do you want to watch me play trains! LOL We are still working on the sharing thing.
Ethan has memorized 4 bible verses already and he knows all of his ABC's capital and lower case. He knows most of his numbers 1-10 and can count 1-10.
The other day in the car he said "mommy, P is for peach." Yes my smart little man, P is for peach!!
Ethan shocks Jake and I daily with his knowledge. Sometimes we joke that he has a photographic memory. He loves to sing songs and be sung to.
Recently he has taken to reaching his little beautiful hands out, grabbing my face and giving me a kiss. It's the most beautiful precious moment of the day sometimes.
Some of Ethan's sayings or mis-sayings are things like
"mommy, what do de do?" What he is trying to say is "mommy, what do you call that?" Which is funny b/c he can easily and clearly say "mommy what's that?" Guess he's trying to get those longer sentences in. haha
Ethan calls the fisher price little people "dillies" No idea where that came from
"Swanwich" for sandwich

With all Jake and I have had going on the past few years Ethan has been a shining light. ALWAYS bringing laughter and joy into our house. Always making us thankful for all we have. Ethan is an amazing blessing not only to JT but to us as well.
HE IS THE INCREDIBLE ETHAN!

A bitter sweet day!

If you only have a minute and want to read about the sweetness of today skip to the part that is about JT. Thankfully the amazing news is in regards to JT!

Today was a crazy day. Between JT and I we had 3 doctors appointments and a phone call from another doctor. The bitter news is that sadly I have been struggling with some health issues. I am currently in a back brace to help me stand up straight and walk. Today I had another chiropractic appointment to look at x-rays and see what the problem is. My neck is not no longer in the correct position and the last disc in my back is in slight (seriously, slight!) danger of herniating. So right now we are in the midst of re-aligning my back to help my neck get back to where it should be. This will also help my lower back heal and strengthen as well as keep the disc from being damaged any further.
The phone call was for me as well. I recently found out that I might have a thyroid disorder. I asked several people to pray with and for me. My prayer was that this disorder would be a pregnancy thing and not a lifetime issue. Sadly, it turns out it is a life long issue for me. It is common but it is still frustrating. I am going to have to learn how to take medication daily and keep track of it. I hate taking meds. and I am terrible at making sure I take them regularly. Time to learn! Although I am sad that it isn't a temporary thing I am extremely thankful that it is something that can be controlled with medication. I am thankful that it was discovered and I am thankful that certain aspects of my recent decline in health can now be explained. God is good and He has a plan in all of this!! I will trust in that :-)

NEWS ON JT:
Today we had an appointment with JT's neurologist. We also got the results of his MRI... finally! The news couldn't have been any better :-) The way that I understand it (and I am not an expert) is that one, there is no further brain damage than what was originally seen at his birth. This is a huge blessing and an answered prayer! We have been praying for months that JT's MRI would show exactly what it showed the first time. The MRI not only showed no further brain damage but it showed that the white matter of his brain (the part that was damaged due to the PVL and CP) is growing! Basically there are parts of the brain that haven't decided what they want to be yet. JT's brain is teaching these parts of his brain to take over the role of the damaged white matter. Bottom line, JT's brain is learning and growing and all the signs we see in him with motor skills, language skills... all of these things were in question and although we aren't certain what they will look like we do know that miracles are in fact happening in JT!!
I feel like this is slightly scatter brained but I am so excited and I just want to share all the good news, so sorry if this is nutty. We are seeing miracles happen!! If you are or have been praying for JT please continue. Please keep praying for miracles to happen in his little life. He has been through SO much and uh, this is just such a relief!
If you are praying for JT please pray for his little body to heal. The last doctors appointment we had was with the pediatrician AGAIN :-( JT has been fighting a fever and an ear infection for over a month now. Thankfully the ear infection is not back but he is still fighting a fever. Pray for healing, complete healing!

Jake and I are so excited. JT is babbling like a little chatter box. He has SO much to say. His desire to sit up is so strong and he LOVES to stand. He is a strong little boy with so much fight in him. (some days I have to remind myself that that fight is a good thing. lol) We are so blessed by such an incredible God. We have a Father in Heaven who loves us and who knows what we need when we need it. Trials are given to every single one of us but when you have God by your side, the peace that only He can give... the rejoicing in the face of those trials and the rejoicing when the trials are over it's amazing! It's rejuvenating! It's miraculous!

Please, keep praying for JT. God is listening! Pray for our family and thank God for his mercy and grace. Thank God for the miracles we have seen in JT. Ask God for more miracles!!

Thursday, January 6, 2011

2011 not exactly the start we hoped for

Hi friends,

Jake and I were hoping that in about a week we would be sharing the great news that we are PREGNANT! Sadly, that is no longer the case. I lost the baby and I feel called to share a bit of our story with you. Here is the quick version of what has happened:

About 2 weeks ago I went in for a sonogram to determine the due date of our third angel. I should have been about 7-8 weeks along. They said I looked to be about 5.5 and couldn't find the heart beat. They said come back in two weeks to see that everything is ok. I went yest. (Wed.) to have my second sonogram. There I found out that there was no heart beat and the baby didn't make it. The strangest and hardest part of all of this is that I never showed signs of a miscarriage. No cramping, no bleeding and still having morning sickness. My body held onto the fetus that had passed for about a month with no signs of discharging it. (I should have been just under 10 weeks yest.) So with that we decided to go ahead with a DNC. A surgical procedure to remove the fetus. It was a hard decision but since my body wasn't letting go we felt it was the best one. Best for me and for the boys and for Jake. We felt that this would give me the easiest and quickest physical healing. Not to mention emotional healing as well. Today was the DNC. All went very well. I am home, resting and feeling fairly well.
Jake and I appreciate your prayers but we would also appreciate your praise. God has blessed us time and time again with the peace that passes understanding. I cannot explain what an incredible gift from God that is. We are so thankful that He is our Father in Heaven, that he loves us and cares for us and that His grace and mercy overflow. Please sing His praises with us. As for prayers we would greatly appreciate prayers for the quick healing of my body and of our hearts. Pray that in the Lord's perfect timing we would be blessed by another pregnancy, a healthy full term pregnancy and that our family will grow. Our desire is to have a large family. We hope and pray that the Lord will hear our hearts desire and answer our prayers.
We have a BIG God! We have a loving God and yes,bad things happen but in that good things happen to. We might just not know what they are right now. Everything God does, he does for the good of those who love him. Romans 8:28 tells us And we know that in all things God works for the good of those who love him, who have been called according to his purpose. We love God and we know he has a plan for us and for our children. We are thankful that He is in control and we are not!

Thank you for your love and support. Thank you for your prayers. God hears your cries for us, we know He does. He has answered so many of your prayers for strength and peace. We are grateful!

May God bless you and may He bless us and our family.

All our Love in Christ Jesus who loved us and died for us,
Jake and Melissa