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Over The Hump!

This past Tuesday I had my second treatment of my 4th round.  I officially have 2 rounds left.  I should be done with my last treatment at the end of September.

After my 3rd round it still felt like I had a long way to go to see then end of treatment.  Now that my 4th round is over it feels so good to be past halfway.  The first treatment of each round is usually the worse, I just feel worse after the first treatment.  For the most part I have the nausea under control.  My stomach usually just hurts a few days after and there is not much relief.  Food doesn’t taste the same.  I have also felt pins and needles in my hands and feet, and in my face sometimes.  The second treatment is a bit easier to take and my week off also follows it.

My blood counts have been good throughout treatment.  The only things that fluctuate are my Magnesium and Potassium.  All in all I have been doing well going through chemotherapy.

I did go in to see my primary Doctor about my thyroid.  She sent me to have an ultrasound done, which showed a small nodule on the right side.  So, my Doctor sent me in to have a thyroid biopsy done.  The first time I went in to have it done, the Radiologist that was to do it was looking at my ultrasound and felt that the nodule was so small that it would be nothing to worry about.  They decided not to make my neck a pin cushion and sent me on my way.  Well, my primary Doctor really wanted me to have the biopsy done, so I was back a few weeks later and this time the biopsy was completed.  I am happy to say that the results came back benign.

Chemo

Zane and I at my first treatment of my 4th round!

I was trying on hats at my last chemo treatment!  I mostly just go bald, but my nurse kept insisting I look at their box of hats.

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Isaac has been doing great.  There was a concern a few weeks after we brought him home.  Part of his incision had opened up and the surgeons were concerned that it wouldn’t heal on its own.  They had contemplated going back in and closing it up and possibly taking out the plate that was in that area.  They decided to give him another week to see if his body would heal up and avoid another surgery.  Well, he must not want to go into surgery because the incision healed and the following week we were in they were able to remove the stitches.  He does still have his Broviac Line and is still getting heavy antibiotics every night infused through the line.  He will continue with the infusion antibiotics until his next surgery.  He will be having surgery on his palate and his first finger release in about a month or two.  We are still waiting to hear from the scheduler on a date.

Isaac loves to play the iPad or iPhone.  His favorite is to play the piano app.  He is great at sitting up.  He loves toys that spin.  He is working on crawling.  We bribe him with the iPad and he will work his way to it, in an army crawl his own style.  You never realize how much you take your kids milestones for granted until you have a child that all these milestones are a BIG deal.  Well, Isaac, he is a bit of a BIG deal around here.

Capes

Super Isaac and his sweet friend Super Avah flying over Children’s Hospital!

The Craniofacial department has a camera that takes a 3D picture.  These next two pictures show a comparison of Isaac’s head from the beginning of May, before his last surgery.  The pictures on the right are from May and the pictures on the left are from a few weeks ago.  You can really tell a difference in the shape of his head.

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He loved this swing! He fell asleep while he was in it!

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Surgery Recovery

I was hoping that yesterday we would be bringing Isaac home from this surgery, but his recovery from surgery has been a bit rough on him this time.  His JP drain was taken out Saturday morning and he did move from the PICU to the general floor early Saturday evening.  When he got to the general floor he was running a fever, so they took cultures to be tested to see if he might be getting an infection.  His incision was bleeding more then the Doctors liked, so they were going to keep an eye on it overnight.  Isaac had a bit of a rough Saturday night, waking up moaning and crying whenever he was touched.  He is not keeping all his feeds down.  All his IV’s have been taken out, because he moves around too much.  The Doctor put more stitches in Isaac’s incision on Sunday to help with the bleeding.  Isaac was running a fever once again last night.  Nothing from the cultures, so a chest X-ray was taken not too long ago.  The Doctor told Zane that Isaac needs to be fever free for 24 hours before they even think about sending him home.  He was running a fever earlier today, but it is going down and he has been up and playing.

I did take the kids to the hospital on Saturday so they could see him.

The vending machine sure got their attention

Zane has been spending his time at the hospital with Isaac.  It breaks my heart to hear of his struggles and not be there with him, but the hospital is not exactly the place I need to be hanging out at.  Zane has been great to send me pictures of him, so here are a few of them.

This picture is from Sunday


Sleeping in Daddy’s arms!

Sitting up and playing this afternoon!

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A Year Ago

We brought Isaac home from the NICU after he was born exactly a year ago.  I have been meaning to post Isaac’s time in the NICU for the last several months.  I figured now is as good as time as any.  Isaac was in the NICU (Neonatal Intensive Care Unit) for 15 days after he was born.  We weren’t quite sure how long he would have to be there.  Honestly, I was expecting it to be longer then 15 days.  Those days in the NICU were long, especially not knowing exactly when he could go home.  Isaac showed great improvement each day and his nurses that he had were awesome.  Isaac is definitely a fighter!!  This is a picture I took of him when he was a month old!

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The rest of this post is pictures of Isaac’s time in the NICU.  Looking back at these pictures makes me miss those early weeks!  So far each stage of life has it’s ups and downs, but there is just something about those first few weeks that is so special.

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This picture shows how tiny this boy was. That is a two ounce bottle.

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Isaac’s nurses loved styling his hair after his baths.

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0438 Emmett loves his brother. He loves to be close to him, sometimes a little too much.

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June 29, 2014 Isaac was discharged from NICU!!

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Two of his amazing nurses!

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Home sweet home.

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The turning begins

We started turning the distractors today.  We will turn them every day twice a day for 21 days.  Each full turn moves the distractors 1/2mm.  Isaac did not even flinch or react to Zane turning them this morning.

Isaac has been doing great!  He has been playing with his toys and talking, although he mostly says, “dada, dada, dada”.  We have been able to take him for walks inside the hospital.  Joseph and Sarah have been visiting this past week and were able to come and visit us on their way out of town yesterday.  The hospital is still under visitation restrictions, so no one under 13 is allowed on the patient floors of the hospital, but since we were able to take Isaac out the girls were able to see him.  Here are pictures from our walk yesterday.  He fell asleep while we were out!

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He had X-rays taken yesterday to check the placement of the distractors.  Zane carried him down to radiology for those. I took pictures of the X-rays.  You can see the plates and you can also see the line where they cut his skull.

Isaac received a cape from Tiny Superheroes, a tiny cape company who seek to empower kids who exemplify strength & determination as they overcome illness or disability.  I still need to get a picture of him wearing it, but here he is in the hospital crib playing.  We also had some friends stop by, who we met in December who have a daughter with Apert Syndrome, and they brought him a sign with his name on it.

  

He won’t take a pacifier, but he loves his bottles.

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We have our own InfANT MAN!!

Isaac had his first surgery yesterday and he did great.  He had a Posterior Cranial Vault Distraction. During surgery they make a cut in the posterior part of the skull and adhere plates and distractors rods.  We will turn the rods daily for 21 days, which will push back his skull and allow for bone formation in between the bone segments.  The reason for this is to expand his cranial vault and give his brain room for growth.

Here is a picture of an infant skull model with the plates and distractors rods.  Isaac’s plates and rods are not in the same location as these.

Here are two pictures of Isaac’s first CT Scan from last September.  You can see that his coronal suture is fused.

His surgery went well!  Everything went as planned.  His ENT was also in the OR to do a sleep study scope, to see why Isaac’s oxygen drops when he is asleep, a Bronchoscopy, a Laryngoscopy, and to check his ears for fluid.  The outcome of all the scopes was that Isaac’s walls in his throat collapse while he is sleeping, so we will be starting CPAP at night.  Isaac had fluid in both ears, so the ENT placed ear tubes in both ears.

Here he is in recovery.  He was pale, I know hard to imagine our kids any whiter, his eyes were a bit swollen and he was very sleepy.

And here is a picture after we moved up to his room.  He did not have to spend the night in the PICU!

Isaac is a strong boy and a fighter!  We are so very proud of this little boy!