School!!

Today was a pretty exciting day around here.  Zachary went back to school!  There are no words…..

Zack started back to school with half days to make sure his body can handle things and to help build back up his stamina.  Way back in August, Zack actually went to the first day of school. When he got home off the bus and walked toward me his stoma prolapsed.  We rushed him to the ER at Johns Hopkins where he was admitted for two days.  He was able to return to school for four days before we left for Cincinnati and his reattachment surgery.  Today felt like it was his first day of school.

A dear friend of our family was visiting us and came along to help capture the day in photos.  Thank you, Kimberly!  These are some of my favorites:

IMG_3546Zack getting out of the car.  The excitement was written all over his face…just like the chocolate!

IMG_3547

So happy!IMG_3548

Mama trying to keep up with Zack’s running feet in the parking lot!

These next few photos are quite similar,  but I love Zack’s expressions and couldn’t decide which I liked best.  We are so grateful for Zack’s doctors and nurses and all the people who have worked so hard to help him feel better.

IMG_3553 IMG_3554 IMG_3556

Finally signing in!

IMG_3566

Zack and his teacher.

IMG_3572

Zack’s class welcoming him back!

IMG_3573 IMG_3576 IMG_3577

IMG_3578

 Checking out his desk and remembering all the cool school supplies.

IMG_3580

My favorite photo.  Zack at his desk, getting ready to work…as it should be.

 I can hardly believe this day is here.  We are hopeful that all will continue to go well and that soon Zack will be able to return full-time to school.  For now, we could not be more pleased and excited!

~ Dawn

Happy Thanksgiving

 Happy Thanksgiving from our crazy boys!

IMG_3540The Penrod Family has much to be grateful for this year.  This picture for one thing.  All of our boys are home, happy and fairly healthy!  Yipee!

Our oldest son, Drew, is home on Fall Break and his wish was to have everyone over for Thanksgiving.  We had a fun day of family, food and fun.  You know me, I have pictures to prove it.

image

Fun times making our traditional apple turkeys.

IMG_20141127_131942_606

A little electronic time for Jake and Ronnie.

IMG95201411279514350495441 (1)

Cousins wrestling

 Zack has been doing amazingly well since his dilation in Cincinnati on November 10.  His bleeding has slowed down, his stomach is feeling better and he is gaining weight.  This may sound a little strange, but it is a little hard to settle into this new “things are going well” thing.  I mean, things were not going well for so long that it is hard to relax and enjoy this new phase…but we are working on it!

Zack is doing so well that we are working hard to try to get him back to school for half days in a few weeks.  We think that going to school half days until Christmas will help him ease back into school after essentially not being in school for the past year and a half.  Last year he attended Kindergarten full-time for just three weeks.  The rest of the year Zack attended half days with the other half of his instruction completed through his Home and Hospital teacher.  This year for First Grade, Zack has attended just six full days with the rest of his year being taught at home full-time with Home and Hospital.  It will be interesting to see how he reacclimates to school as well how much stamina he has.  We are so thankful to have a boy healthy enough to be getting ready to head back to school!

Before Zack heads back to school we have to return to Cincinnati for one more dilation.  Happily, this time Zack’s procedure will be a same day procedure in the OR and take place on December 1.  When the dilation is complete, we should be able to take him back to the hotel.  We anticipate that things will go smoothly and plan to drive back home on December 2.  Whose life is this?  I could really get used to this….

As we count our blessings today, I cannot help but think about our friends who are still struggling with illness.  Today especially, we are keeping our friend Logan close in our hearts and prayers.  On December 1, as Zack undergoes what we hope will be his last procedure, Logan will be admitted to the hospital for the beginning of his stem cell transplant for Neuroblastoma. You can read more about this amazing little guy here.  We hope you will join us in praying for our friend and his sweet family.

Hug your babies!

~ Dawn

 

Our Week

We have been home for a little over a week and, for the most part, things are going pretty well.  Shhhhh.  Don’t tell!  Zack looks much better, he has a bit more energy and we are getting the hang of this NG tube feeding thing.

When we left the hospital, we thought the NG tube was to help Zack get nutrition until we got the stricture fixed in Cincinnati.  After talking with the dietitian today, I am generally unclear about the plan.  I know it is a Sunday, but our hospital staff is awesome.  Zack’s dietitian wanted to review how things were going and picked this weekend to talk.  It worked out nicely as it gave us several days to observe Zack and to have a good idea of how things were progressing.

We discussed Zack’s weight.  Initially it was up, but after actually getting some stool out today (finally), it was back down about two pounds.  One of the goals was to get Zack to the first standard deviation on the weight chart by November 1.  I do not think 42 pounds makes that cut because that is about how much he weighed when he was admitted.  On the other hand, we do not know what Zack’s true weight is because he is artifically weighed down with poop. All the things I never knew about stool that now take up space in my brain….

At any rate, the plan is for the dietitian to talk to Zack’s GI doctors and see what they want to do and how long they would like Zack to continue with these feeds.  Jim and I are comfortable waiting until the stricture is fixed in Cincinnati before messing with things.  Zack has considerably less pain with the formula than he did on regular food and we know he is getting good nutrition for the first time in a long time.  We will see what the doctors think tomorrow.

Zack currently has pain at night, but not during the day.  Or, perhaps he does have pain during the day, but is able to be distracted enough not to need pain medicine more than once or twice while awake.  That is way better than before.  At night, however, it stinks.  Last night he was awake at 12:30 crying in pain, again at 3:30, 5:30 and 7:30 when we just gave up and started our day.  The night before he literally did not sleep for more than 20 minutes in a row before waking in pain.  I feel really bad for Zack when that happens and I am not thrilled about it for myself either.  It is hard to be a good mom on so little sleep.

We can hear his stomach making some incredible noises and often wonder what on earth is living in there!  We believe Zack has pain because he is unable to get adequate stool out and it builds up over the week.  It took from last Friday until this morning for Zack to have a decent bowel movement.  That is a long time!  His stomach was pretty large and distended.  Happily, it looks better today, but it is still not close to being flat.

Enough about stool and being tired and feeding tubes.  Some fun things did happen this week.  Zack got to go to school to visit his class.  He had told me that he did not remember what his classroom was like and that his classmates must really miss him. He has only been to school for six days of first grade, so I was anxious for him to be able visit his class.

When the time came to go to school, Zack fussed about being too tired and having a tummy ache.  I told him he had to go anyway and I am so glad we did.  His class was so cute and welcoming.  They had made him some Get Well cards and had all signed a special pumpkin for him.  After a little question and answer time, he was able to walk with them to picture retake day.  Since Zack was in the hospital for the real picture day, I appreciated that!  Zack was also able to see some of his special teachers and his school nurse.  His spirits were high when we left.  Here is a picture of Zack in his classroom with his sweet teacher.  You can see how distended his belly is in this photo.

zschool

Later in the week, we celebrated Daddy’s birthday which just happens to be on Halloween.  Zack loves Batman.  Jim and Zack play Wii Lego Batman often and Zack often calls Jim, “Robin”  or “Sidekick”.  My sisters thought it would be awesome for Jim to wear a Robin costume on Halloween and he was a good sport.  Anything for his boys.  Check it out.

zandrobin

 Batman and Robin

IMG_3416

Jim and Jake tried to jazz Z’s mustang up to look like the Batmobile.  It was a valiant effort.  The Batmobile after cruising the neighborhood.  It was starting to fall apart.  I wish I had a picture of how cool it looked at the beginning of the night.

IMG_3418 IMG_3419

I promised Jim’s office and my sisters that I would post pictures.  You are all very welcome.  I think you get the idea of how incredibly awesome they looked.

Surprisingly, Zack did not even care that he did not get to eat any Halloween candy.  He actually has not complained much at all about not eating.  That is a topic for another day.  Many of our neighbors were so sweet and had special non-candy treats for Zack.  He has been having lots of fun with all the glow sticks and stickers and silly string.  Thank you to all who thought of him this Halloween!

Today I am gearing up for another week of single parenting around here.  I am thankful that we seem to be in a decent holding pattern at the moment and am looking forward to uneventful days until Jim gets back home.  I am also thankful that our new cleaning lady will be starting soon.  Maybe I will actually get a handle on the craziness that has exploded around here….if Zack actually gets some sleep…and if the amount of laundry decreases…Even if those things do not happen, I’ll still be one lucky mama.

~ Dawn

 

 

Home!

Dorothy is right, there really is no place like home!  When we arrived home on Monday evening, a decorated house awaited Zack.  He was pretty excited!  Thank you to all who helped make his homecoming special.

photo 4 (1)

Zack was so excited!

photo 2 (2)

He loved all the balloons outside and ….

photo 1 (2)

Inside!

Many of you have been asking how Zack is doing.  I am not going to lie, it has been a tough few days.  Our trip home was especially hard on Z’s tummy.  I spent the last few hours in the back seat with him rubbing his belly.  Once we got home, Jim and I were able to give him an irrigation and he slept really well for the first time since his surgery. I was so excited for him (and maybe just a little bit happy for myself).

Yesterday was a particularly brutal day for our little patient.  Everything he ate hurt his belly.  He required much belly rubbing.  In addition to his abdomen hurting, he was complaining that his hip hurt.  He has been pretty consistent in this since surgery and I have yet to figure out what exactly he means.  Perhaps he really means that his hip hurts.  Who knows.

Jim and I were so looking forward to putting Zack to bed last night.  He cried much of the day and clearly needed rest.  Once he was in bed, the crying out in pain began.  It is hard for us to watch him hurt when we know there is really nothing we can do about it and that it is normal given his surgery.  We have been alternating Tylenol and Motrin, but he has been asking for Codeine.  We have been avoiding Codeine as it slows down the intestines, but we did allow him to have one dose last night.

In addition to the pain in his belly, Zack is still passing a fair amount of blood in his stool.  We know that is normal as well, but it is not a comforting thing to see.  We are also unsure how long this should continue to happen.  I guess we should add that to our list of questions.

Because his large intestine has been shortened, his stool is more acidic.  Zack says it feels like his insides are burning.  Add to that the pain of evacuating the stool and you have a kid who thinks sitting on the toilet is pretty awful.  We were hoping to avoid just this scenario.  We are trying to explain things to Zack in ways he can understand, but in the middle of the night all reason leaves the building and crazy boy enters.  There is no talking or reasoning, just screaming.  It is pretty awesome.

Happily, today seems to be better.  Zack’s buddy came over after school and spread some cheer.  Zack perked up for the first time and actually played for a bit.  Seeing him act more like himself helped me start to relax.  I am thankful for that.  It is hard as the mom to figure out which of these new pains to worry about and which are normal.  I am starting to realize that Zack can be distracted if the distraction is desirable enough.  This gives me hope that we will soon be having more good days than challenging days.

Adding to all of our craziness, today was also an IEP meeting for Zack at his school. The meeting was pretty productive and I enjoyed getting out of the house for a little bit and back into “normal” life. The meeting covered several issues, one of them was getting Z started back in the Home and Hospital program.  Jim and I are excited for Zack because he will have the same teacher at home again this time.  She is pretty awesome with Zack and I kinda like her, too.  I was also excited to see Zack’s classroom teacher today as well.  It is obvious that she loves her job and her students.  I am looking forward to working with her this year and I know that Zack already thinks she is pretty special.  Zack is one lucky boy!

We are now getting close to bedtime and another irrigation.  Zack knows that he feels better after this “procedure” and is almost a cooperative participant.  I guess going from this:

zhomeTo this:

Well, shoot.  He put himself into bed before Daddy got home.  No cute smiling after picture today.  I am not looking forward to waking him up later, but it MUST be done.  I know he will feel better afterwards.  Almost makes the irrigation something to look forward to…..almost! Just keeping it real, people.  Keeping it real.

~ Dawn

Here we go…

Zachary is scheduled to have surgery on Friday, time to be determined. How is that for an opening sentence? It’s all I’ve got.

After meeting with both Zack’s surgeon and GI doctor today it is clear that he needs surgery sooner rather than later. His x-ray’s today showed no improvement from discharge even after a strict liquids only diet. In fact, his surgeon’s head resident said they even looked a little worse. His stomach continues to go in cycles of not too bad to distended enough that Zack wants to be drained.

Zack will be admitted on Thursday evening with surgery at some point on Friday depending on OR availability. Z’s surgeon explained that he will open Zack up along the main incision from last time that begins above his navel, around his navel and down a few inches from there. It could be bigger, but won’t be smaller than the original incision. There are a lot of unknowns about this surgery. Here are some scenarios:

1. They go in, find an adhesion, remove it and are done.

2. They go in, see something wrong with the ostomy and have to move it.

3. He may come out without a mucus fistula or with a new ostomy in a new place altogether. Remember, his mucus fistula is on his right side where the original loop ileostomy was before the revision in June. Now it just leads to the large intestine and secrets mucus, but acts as an access point for testing and “stuff”.

4. They could have to resect more bowel.

5. If they need to move the ostomy, it will probably end up back on the right side which is closer to the place the small intestine would be inside if nothing had been messed with at all.

As you can see, nobody can really say what will happen on Friday. Zack will spend one night in the PICU (if all goes well). In June, Zachary had lots of pain that was hard to control. He ended up staying in the PICU for 5 1/2 days mainly because of his pain. This time he will be given an epidural while in surgery to help with the pain. He will need to be in the PICU as long as the epidural is in place. The surgeon said to expect him to be in the hospital for a week.

Happily, we have just completed enrolling Zack in our county’s Home and Hospital Teaching Program. This program allows students who are unable to attend school due to illness to continue to receive instruction either at home or at the hospital. We were a little concerned about the logistics because we live in a different county than our hospital. However, our hospital social worker can facilitate all the craziness for us and in the end a teacher from the hospital’s county will come to the hospital to work with Zack and our county will be billed. Tomorrow Zack will meet the teacher who will come to our home to work with him before he returns to school as well as if he is sick again – praying this will not be the case! I know he will miss all his friends at school, but I am thrilled that he will actually get some instruction during his hospital stay.

Other exciting news of the day….our Pastor and his sweet wife brought the most delicious dinner over tonight. Oh my, was it ever scrumptious! Our neighbors brought us a homemade apple pie made with apples they picked themselves. We can’t wait to put Zack to bed, break out the ice-cream and eat that puppy. Yummm-o.

Zack and I also had an unscheduled Toys “R” Us visit today. I don’t usually spend a lot of money on toys for my children. They have plenty and there really isn’t anything they need. I’d rather spend money on experiences and other fun things. Today was a special day. I felt bad for my boy, it’s been a long few months, and wanted to spoil him a bit. We got some Rescue Bots and a Rescue Bot costume for Halloween. The toys are for the hospital, but it was exciting watching him carefully decide which toys he wanted.

So there you have it. Zack will go to school tomorrow and Thursday. We will check-in to the hospital after dinner and get his IV started. Zack’s biggest concerns are when he can eat real food again AND whether or not he will have to have another NG tube. He’s been a trooper and I can’t wait until this is all over.

We appreciate your prayers. We would ask for prayers for Zack’s surgeon(s) on Friday. That they would be able to clearly see what the problem is and be able to correct it. Prayers for Zack’s body to handle the surgery well. Prayers for Jake as he begins another week of being parentless. Finally, prayers for Jim and me that we would have the strength and energy to make it through the week.

I’ll leave you with this song by Mandisa. I’ve been hearing it all summer and it makes me think of many people. However, right now it is a good reminder to me that God’s is in control and bigger than even this. Enjoy!

Thursday

Oh Thursday, we meet again.  Last Thursday Zachary was discharged from Walter Reed after 7 days of being hospitalized. The week before on Thursday, Zack was being discharged from Walter Reed.  Today, you guessed it…Zack was discharged from Walter Reed.  I see a pattern here and I would very much like to break the pattern.  I feel good about it this time, maybe…

I have a hard time telling a story with just a few words.  It’s a problem.  I’ll try and do my best this time.  I can’t promise it will work, only time will tell.

When last we met, Zack was home and doing well.  He was happy and energetic and went to school and was like a real boy again. We had a good run.  Sunday morning Zachary woke up with a distended tummy.  Jim and I measured his stomach and took a wait and see approach.  Zack did not want breakfast, but did want to go to church. After church he asked to eat at Panera Bread.  And then he sat on the sofa.

The doctors sent us home trained in draining Zack’s ostomy for just this situation.  See this tube?

redrubber

Yep.  We get to stick that puppy into our child’s abdomen and watch stuff come out.  I am not a fan, but Zack feels so much better when we do it and that makes it easier.  Jim drained Z on Sunday at 5 p.m.  At 2 a.m. we heard groaning.  I’m sure you can guess where this is leading.  Zack’s stomach was distending quickly and at 3:45 we drained him again.  He felt better, but we made a mess in the draining process and had to change bedding, pajamas, have a sponge bath, etc.  It took a long time to get back to bed.  In the morning, he still felt sick and I kept him home from school.  Sigh.

I texted his doctor.  He said I needed to get Z into the surgeon at his next available appointment.  That appointment wasn’t until the next day, but after sleeping on the sofa all day, Z’s ostomy suddenly began draining.  He felt better.  I sent him to PT.  He was quiet, but OK.

Being a good mom, I sent him to school in the morning.  He asked for breakfast, but didn’t really eat.  He wanted to go to school.  He had missed so much already.  The school said they would call if he felt bad.  They didn’t call.

When I picked him up for this doctor appointment and saw him walking down the hall I knew…this is not good.  After signing him out of school, he asked to be carried.  In the car, he asked to go to 3 West (the inpatient pediatric ward at Walter Reed).  I was very happy we were headed to see his surgeon at this point.

At the surgeon’s office Zack was not able to be drained.  I mean, the doctor tried, but nothing would drain.  The contents were sludgy, thick and generally abnormal. Guess what he said?  “I’m really sorry, but Zack needs to spend the night on the ward tonight. I need to think about this and figure out what is going on.”

zsiv

1001131805_0001

Our GI team felt that Z had a mechanical obstruction.  The surgery team did not feel this was the case.  Two CT scans and several x-ray’s later no definitive answer could be found.  I appreciate that our surgeon did not want to operate without a clear cause.  He reminded us that Zack’s body is unique and that he did not want to do anything unless he was sure he could fix the problem.

In the meantime, the contrast from the CT scan pushed the obstruction open and Zack started out-putting (my made up word)at a rapid rate.  Until the next morning…when he obstructed again for 10 hours.  An NPO (nothing by mouth) sign went up so that Zack would be ready for surgery in the morning if necessary.  Late last night he started out-putting like crazy again.  Yay and super frustrating all at the same time.

Yay, we get to avoid surgery for now.  Frustrating because we do not know what is happening, exactly.  The latest theory is that Zack has adhesions in his abdomen that are causing a loop of bowel to pop out of place and obstruct.  Large amounts of fluids seem to pop it back into place and open it back up.  Or something like that.  I have no idea really, but I’m at least mostly right.

Here is the issue.  The only way to fix that is surgically.  It will not be a little surgery.  Zack’s body does not do well with surgery as evidenced this past summer.  We do not like surgery and would like to avoid it for as long as possible.  Plus, going in to fix scar tissue creates more scar tissue and nobody can guarantee it will work.  Further, we have to have another surgery to reattach his colon in 18 months or so.  See the problem?

The GI team and the surgery team have agreed to try a liquid only diet until Tuesday.  On Tuesday we will have more x-rays and blood work and see how things are going.

That is pretty much where we stand.  Yesterday after talking with our surgeon, I was fine.  After talking with the GI team I was fine. They had not yet limited Z’s food intake and actually said Z could have a pancake.  I tried to order one and the kitchen would not answer.  I went to the nurses station and they got through right away.  I tried to order and the kitchen said I was too late for pancakes (it was still 5 minutes before breakfast ended and I had been on hold for over 5 minutes).  The night before they forgot Z’s Gatorade.   THIS is what did me in…Code Purple!  Code Purple!   Penrod Lady is crackin’ up!

I started crying over a pancake.  Not just tearing up, sobbing.  It was pretty embarrassing, to say the least, but really not at all about the pancake.  I was just so frustrated.  I had been praying for clear answers and it was obvious that was not happening.  I was tired, my head hurt, I hadn’t showered, I was wearing my dirty clothes from the day before because Jim had not yet arrived and suddenly I was d.o.n.e., stick a fork in me, DONE.

Now that we have been home for a few hours I feel a little better.  As always, things could be worse.  I don’t really like that saying because sometimes what is happening right now still stinks.  However, I can definitely see that this is not the worst thing that could be happening.

All of our doctors have said that they encourage us to get second opinions, that Zack is a unique case.  The surgeon has been calling his colleagues at different hospitals.  Our GI team has recommended a few places to us.  But that leads me back to my initial frustration.  There is no best answer.  AND when Zack starts eating again, I’m afraid he’ll obstruct again.  It feels like a vicious circle.

Happily, I have a sane husband who tries to help keep me grounded.  He reminds me that Zack is home and happy right now.  He reminds me that we have a plan, that we have avoided a major surgery (for now), and that Z is being closely monitored.  I’m hoping that after a few good nights of sleep, some healthy food, some exercise and a chance to actually talk to Jim without Zack listening, we will be able to formulate a plan to bring to the doctors on Tuesday.

And now you are all caught up. Still wordy, but I tried. I’ll leave you with Zack’s hospital stay in pictures taken by the Z-man himself. They are blurry, but from his perspective and kinda fun.

selfiez

zsmamaphoto

zselfie2

Home. For Real This Time.

September, where have you gone?  Last I remember, the boys were two weeks into the school year…I think.  I can’t check because we have a new laptop with Windows 8 and I have no idea how to navigate through it yet.  It’s a bit annoying, but I’m sure I’ll come to love it.  Hey, at least I have a working laptop!  I digress…

By my calculations, there have been 23 days of school this year and Zack has missed 11.  Yowza.  I am grateful that he has such a great support system in place at school because that is a lot of school for one boy to miss.  Add in Zack’s developmental delays and it could be a bit overwhelming.  I’m not worried, surprisingly.  I have every confidence in Zachary and his determination to learn and in his teachers who are eager for him to learn as well.

Back to the hospital saga.  On Wednesday afternoon, Zack’s IV had infiltrated and we were faced with putting it in yet another site.  I guess PPN is hard on your veins and not meant to be used for long periods of time.  Jim asked the doctor if we could just take his IV out and see how things went.  Zack was already on a limited clear liquid diet.  We would just bump up the amount he was taking by mouth.  The doctors agreed and we had a new plan.

Thursday found Zack in high spirits and hungry.  Hungry is always a good sign.  We were still apprehensive about solid foods.  Zack wanted a pancake.  After much discussion between the doctor and dietician, Zack was granted his wish with the stipulation that it be mashed, doused in syrup and chewed at least five times with every bite.  He was thrilled!  I made him eat slowly and only one pancake.  When the GI team arrived, they said he could go ahead and eat the other one and he giggled in excitement.

After proving he could eat and keep things down and not have his stomach distend or have any pain, we started talking about going home.  We had an interesting conversation with the dietician and doctors about some potential food issues.  When he was a baby and having issues with some bad reflux and failure to thrive, a doctor told us Zack probably had a milk protein allergy.  We switched Zack to a soy formula, stuck him on Prevacid and he did a little better.  When he turned one, we tried milk and didn’t have any obvious problems, so we figured all was well.

During his hospitalization in Germany, the doctors did a gene test and said he was definitely Lactose Intolerant, so we switched to Lactaid.  None of the doctors here have ever heard of that test.  With all the issues we are currently having, I believe we will be doing some allergy testing and re-doing the lactose intolerance test to see if either of those things are truly a problem for Zack.

Back to yesterday…Zack had lunch and it went well.  The doctors were then comfortable with us taking Zack home and advancing his diet here.  Zack was incredibly excited.  He immediately got a burst of goofy energy and was declaring to all that it was the best day of his life.  He also declared that he was a love machine and needed to give us lots of love.  The rest of the day was filled with lots of hugs and kisses.  Who can argue with that?

Whenever we get back from the hospital (sadly we are becoming experts), we are exhausted.  I’ve addressed this before on this blog, but I feel the need to write about it again.  There are so many things that need to be done to catch up around here.  It can feel a bit overwhelming.  Add in our loveable pooch who sheds more than his weight in hair daily and it’s enough to make me want to go hibernate or call Merry Maids.  I’ve been learning to make a very short, easy to accomplish list for our first day home.

My list for today includes:

1.  Get Zack to school.

2.  Exercise

3.  Update the blog

4.  Vacuum the floor

5.  Feed my family

Let’s see how that list is going, shall we….You’d think getting Zack to school would be easy, but he was exhausted.  He slept until 8:40.  His bus arrives at 8:40.  We decided that he needed his sleep more than being on time to school.  Amazingly, he was only 25 minutes late.

I did manage to get outside to run.  My iPod was out of juice, but I was kind of looking forward to thinking through some things.  After the first hospital stay in September, I finished my second round of Insanity.  If you’ve ever been awake at midnight, you’ve probably seen the infomercial.  It’s the first thing I’ve ever bought from an infomercial and it is effective, but sadly, it killed my knee.  I now have a bone bruise on the edge of my tibia right where my IT band crosses, as well as tendonitis in my IT band, and it hurts.  I thought that having a few days off from the hospital would have been enough to help it recover, but nope.  1 mile into my run and it started killing.  Sigh.  I walked the rest of the way.  I have my 3rd and final Tough Mudder coming up in 3  weeks.  I hope my knee gets over itself soon!

The vacuum is still in the closet.

Jim had Chick-Fil-A for lunch.

BUT, I am updating the blog!  Yay, me!  I guess it will take a couple of days for us to get back into the swing of things around here.  We’ve already declared a stay at home weekend.  Besides church, we are not going to be going anywhere or doing anything outside of our house.  Hopefully we will be ready to rejoin the world on Monday as that is the day Jim starts his new job!

We are grateful, as always, for so many of you.  My mom came and did laundry and made dinner.  My sisters and nephew came and cheered us all up at the hospital.  Friends from Germany came and visited and made Zack the sweetest bag.  He’s wearing it in his Mustang photo.  Our neighbor brought dinner by so that I can feed my family tonight –Wait!  I can cross making dinner off my list for the day.  Suddenly, I feel like I’ve made progress (thanks, S, I owe it all to you).  Zack’s teachers and classmates made the sweetest cards.  Our church family has been praying for us and all the kids made cards for Zack.  And all of you who have been praying for our family and for Zack and who have sent messages and cards.  It really helped make our days in the hospital brighter.  One last shout-out to the nurses of 3W who took such good care of my boy and spent time chatting with me.  Thanks for blessing our family.  Here’s to the many hospital free days we have ahead of us!

I’ll leave you with a few photos of Z being Z when we got home yesterday.  Enjoy.

goofyhome

zcamryhome

zcarsbag

zrugs

Kindergarten

What?  This post is not about ostomies?  Praise the Lord!  Ha!  Zack is doing pretty well right now and so I thought it about time to get back to the original intent of this blog.  See, Z is a multi-faceted guy.  He’s not just a kid with an ostomy and it’s time to move on…I hope.

Zack has some learning challenges.  Yes, let’s call them that today.  He started in Early Intervention when he was one.  We moved on to Special Ed preschool when he was three.   Here’s his first day photo with his teacher and aide:IMG_0514

After the first part of that year, Zack went from three days per week to five days per week because he needed the support.  He remained in Special Ed preschool and we put kindergarten off for one year because he was not quite ready.  Until now.

To be honest, I am a little afraid of this coming year.  I’ve turned into a control freak.  Since before Zack was born, I’ve been monitoring his every move.  He was the baby the doctors said I would never be able to carry.  Since then I’ve learned that while doctors are great, they don’t know everything!

001 (4)

When he was born, it was evident from about 8 weeks that there was an issue (or several).  We had to monitor his feeding schedule.  He wasn’t making his milestones.  We had to monitor that.  His head was growing too fast.  CT scan.  He wasn’t eating well.  Wasn’t talking well.  We took him to appointments all over the place and watched him like a hawk.

In Germany, we discovered that he had a genetic abnormality.  We also started having lots of tummy issues.  His speech was significantly delayed.  His gross motor and fine motor were off.  We read all we could about these things and learned how to advocate for Zack.  And the control intensified.

Add in the events of this past summer.  You get the idea?  I realize that it was important for me/us to do these things to make sure Zack was getting the best care he could get.  Moving a lot meant having to re-tell every doctor his history while trying not to forget any details.  We knew more about what worked for Z than his new teachers and worked hard to partner with them to help our son.  To date, we have had to try and learn the new IEP procedures in 2 states and one DOD school

These things have forced us to learn to advocate for our child (become helicopter parents).  We didn’t have the luxury of time to help us figure it out because we would be moving again soon.  There was a lot to learn and new people to trust with our boy.  But this is new.

Zack is going to be in a “typically developing” kindergarten.  He’s going to be there ALL day.  At home we don’t notice Zack’s differences.  He’s just Zack.  When he is at school, these differences will be more obvious.  Right now he is a confident, energetic 6 year old who loves to learn and hasn’t figured out yet that he struggles.  I like it that way.  

Hopefully my fears for him in school will be unfounded and things will be great.  The things I’ve been worried about include:  Will he fit in?  Will the teachers have time to be patient with him when it takes him so much longer than the other children to learn something? What happens when he falls behind?  Will he get upset?  Will they be kind to him?  Will the other kids accept him and play with him?  Will his teachers understand him when he speaks?  Will he still love to learn even when things are hard? Will he realize he learns differently from other children?  Will he have enough energy to make it through the day?

In a few days from now, I’ll be putting that precious little man on the bus to school.  I know that Zack is perfectly and wonderfully made.  I know that his father and I will be there to support him every day.  I know that while it will be hard not to compare his progress to others, it is important to remember that his successes are just as fabulous and hard earned.  We are already super proud (yes, that is how I really talk) of all he has learned so far.  So off he’ll go on that bus to kindergarten and I’ll rejoice in my heart that he has the opportunity.