A look at Christmas past.....

I know, I know but better late than never....

Christmas 2008

Christmas 2009

Look Ma, No oxygen!!

Christmas 2010

Christmas 2011

Much love from the Hartmann family...

A Christmas Miracle.....

     So Joseph has been asking every day several times a day to get in his high chair and have some "Num nums".  The last couple days he has been asking for a "cookie" (new word btw).  So this morning he asked for a cookie and to get in his high chair.  So Daddy put him in it and gave him a vanilla wafer....

   So he sat there for a minute and then starting licking it as usual....then.....He started taking little bites of it.  He would use his finger to get it on his teeth then he would chew and swallow it !!!!!  I know EXCITING !!!!  So in about 5 min or so this this what was left.....

Simply amazing.....

Thanksgiving 2011

     Hope everyone enjoyed the Thanksgiving holiday with friends and family.  We had our dinner yesterday. We always have dinner at my older sisters home and this year my mom was there too.  She moved down here a few months ago.  It was a really good day, aside from me being tired as I had worked all night...ugh.  But we all survived, lol. 

     Joseph had a blast playing and laughing and chasing his cousin Kylie.  He is still asleep this morning as I type this.  He is such a good boy.  He amazes me everyday.  So I know you are at the edge of your seat wondering if he had any dinner with us.......Well yes, yes he did !!!  He had the tip off of two pieces of asparagus, half a noodle, some small pieces of dressing and a small green bean !!! I know, who knew?!?!?!  Simply amazing!!!  So much to be thankful for.... 

     As I sit here I think of the posts I see on FB about family members of children with tubies giving the parents hard times about the child having a tubie.  It makes me so sad and mad at the same time. A feeding tube is not normal, I know that but neither is letting a child starve because they can't or won't eat.  People say "He/she will eat if they get hungry enough", uh no, no they won't.  I get the questions too from our extended family, "still not eating huh", "why won't he eat", "I bet I can make him eat".....I know you guys have heard it too, makes me want to scream....Don't you think I want Joseph to enjoy food and not have a tube.  A tube doesn't make life easier as many of them think.  Feeding schedules, insurance issues, vomiting, beeping pumps, and feeding non eating objects (bed, floor, car seat, stroller)...UGH !!!   

    I am so thankful that my close family get it and embrace Joseph and his tubie....

I don't want to jinx us but.......

     So over the last few weeks Joseph has turned some sort of switch in his head.  He is actually asking to get in his high chair.  By asking I mean pointing at chair and yelling "Num Num !!!".  He is loving Nutella on crackers.  He licks the Nutella off and then bites the cracker into pieces.  He doesn't eat the cracker but biting is a huge step.  He will also bite pretzel rods into pieces.  He is actually eating Gerber puffs.  He will bite off a piece and hold it in his mouth till it gets mushy and then he chews it.  He will gag but he gets it down.  He is also breaking toddler cereal bars into small pieces a eat some of it.  It has been such a long wait but I am so thankful he is trying more.   Thanksgiving should be pretty interesting this year !!!



Fresh out of the bath !!



Pumpkin Patch with his cousins Kylie and Emma!



The un-obstructed bowel....And a Cardiology visit....

All I can say is Thank God and thanks for all the prayers for Joseph.....So the story....


As most of you know we started back on a mostly blended diet (BD) for Joseph a couple weeks ago.  The last time we tried this he got severly constipated and it ended in a trip to the ER so were were trying to be very careful this time.  After about a week of BD he stopped having bowel movements so I started giving him more Miralax and gave him an enema.  Waited 2 days to see if he would go, nope he didn't so it was repeated.  By Thursday he hadn't gone so I called te GI doc and got instructions from them.  So he got an adult enema.  Then no more poop so it was repeated. 
     So I get home from work saturday I could hear his belly from across the room. So I checked him and his belly was distended.  So we headed to Redmond.  Got there and got checked in.  We go get KUB and wait.  During the wait we get several pokes to get IV placed....TEARS !!!!  So then doctor comes in and says that they think he has an obstrucion.....UUUGGGHHH!!!!!  So he says that they need to transfer him to Floyd because they have pediatric services.  I asked him if he was sure they would take him due to his extensive history and heart.  He smiled and told me that I might be right and he went to call them.  I have to add at this point.  Joseph has not acted like he was sick.  He has been laughing and playing but his belly is just not right.
     So doctor comes back and said nope Floyd won't take him that he will have to go to Atlanta via ambulance.  So Daddy leaves to go get things that we will needed.  We get packed up and head out.  Joseph loved the ride.  He did so good, even nodded off for a few minutes. 
     We get there.  Get checked in and get in room.  The ER doc comes in and gets info but she gets called away for trauma so we wait for a bit.  Then Radiology comes in and says that they need another KUB.  As we head to x-ray we pass the ER doc and she say that the radiologist doesn't think it is an obstruction.  we get the KUB amid screaming, Joseph hates the x ray machine.  The techs were great and Boo got ballons after so that made him happy.  Again we wait.
   Daddy got here just in time !!! Doc comes in and says... NO OBSTRUCTION !!! Woooo hoooo !!!!
So what happened......the enemas and extra mirlax allowed his colon to fill with air.  He was empty.  Poor baby.....So we get discharged and head home.  He will follow up with GI tomorrow and get another KUB to make sure everything is okay.

   Now for cardiology.....We always have anxitey when we have to go to see Dr. Romp.  Not that he is a bad guy, just the opposite wonderful guy but if you have a heart kid you understand where we are coming from.  So we get in room and wait just a few minutes and he comes in.   Oxygen sats were 100%, perfect! And the ECHO begins.  Right away we see the four chambers and I know where his right pulmonary veins should flow into his right atrium....yup there they were, great blood flow.  Both ventricles are pumping very good, great movement no dialation.  The left ones are harder to see but they were there.  No measurable tricuspid regurg so no pulmonary hypertension.  His ASD has the correct blood shunt.....WOOOO HOOO!!!
  Then we start discussing his heart.  Dr.  Romp said the most wonderful thing we have heard...."Treat Joseph like a kid with a NORMAL  heart"  What???? Did I hear you right....NORMAL????  Yes, yes that is what he said.  It was all I could do to hold the tears back.  No plan for cardiac cath unless he should become symptomatic and he said he would see us in 9 months!  He also added that again that had he not known Joseph's history he would not think there had ever been anything wrong with his heart.  I then asked about his thoughts on the chance of him having an issue with PVS in the future.  He said if they veins are going to re-stenosis it usually happens very quickly.  He added that the further you get from the surgery it dramatically lowers the chance of it happening...Music to our ears ♥ He said that Joseph was a testiment to the skill of the surgeon that did Joseph's repair.  Thank you God for giving Dr. Turrentine the skill and knowledge to save our son......

Promised update.....

     We went to see a new GI doctor because J's pediatrician has been managing his GI stuff since we moved down here.  Which is fine but J developed some Granulation Tissue (GT) by his button.  We tried to treat it with topical steroids but it really didn't do anything except make his whole button area very angry.  We we to see Dr. Meyers in Atlanta.  He was very nice and very patient with J.  He was very friendly and asked a lot of questions so he could have J's complete picture.  He said the GT was not that bad and to try the steroids again but if his button got angry to send him pictures...too cool, no trip to doc if he has issues with it !!  Loved this.  He was fine with J's diet.  I asked about his constipation issues and he said the dose of Miralax was very small so we could go up to keep things "moving".  He is a bit constipated now, had to have 2 enemas but is acting fine so I am at a loss.....  He is down to one can of formula per day.  The rest is food and juice calories.  Today we are doing very thin stuff till his bottom gets rid of some poo. 

     The next day we went to the CRS Seating clinic.  Since J will always have endurance issues we are looking to get him a wheelchair.  He is quickly approaching 40 pounds and getting to big to carry.  Also we want him to have more freedom and independence.  So we had to decide if we wanted him in a power chair or a manual chair.  Both have their issues.  With only one arm that functions normally he would have to learn to use that arm to manipulate the chair.  And then there is power....He is 3 1/2 half, has no fear....do you see where I am going with this.  While I think he could learn to use it we also feared it would make him "lazy" and more dependent on the chair.  So we decided to go manual.  He will use the wheel on the left to steer and maneuver it.  They explained how it works but I am still unsure...lol.  This is a pic of a chair like he is getting....

     It is very low to the ground so he will learn how to get in and out of it.  I think that will happen fast because he has become a pro getting up and down off the couch.  It will take about 45 days to get everything submitted.....We can't wait to get it for him..... 

     We go to see the cardiologist on Sept 7th.  Nerves are already starting...Please.pray that his heart is unchanged.... 

A new feeding plan....and a big anniversary.....

Hello everyone....

     Hope this finds everyone well.  Tomorrow is a very big day....August 23, 2009 was the first day Joseph came home from the hospital.  This was after 180 days, 3 major operations and many prayers answered we were home !!!  It has been a wild crazy ride but I wouldn't trade a minute of it. 

Going home !!!!

Ok so an update....

     We went to the CRS  Ortho Clinic to get J's braces checked and to let them see how he has done after the botox injection last May.  He got his weight and height checked.....He was 35 pounds and 37 1/2 inches....he gained 2 pounds and 1 1/2 inches in about 6 months !!!  I know, I know INSAINE !! 

     So on to the feeding...ugh
So we tried to do a wean....massive FAIL !!  So we start a different road...
Thru an answered prayer we were able to get a Blendtec blender for J.  This blender is AmaZing!  So we are now giving J whole, blended food via his tube.  It is called a blenderized food diet.  This is how many people with feeding tubes were fed before formula companies got involved.  We started his new diet on Saturday.  So far so good, he is tolerating  more during the day and is only getting about half the amount of fluid overnight at this point.  Here is a list of the foods he has been getting:

• Baby carrots (raw)
• Spinach
• Peaches
• Mango
• Blueberries
• Raw Oatmeal
• Quinoa
• Soy yogurt
• EVOO
• Blackstrap Molasssas
• Alvacado
• Peas

It makes me feel like I am actually "feeding" him now.... ♥

     We have a appointment with a new GI doc in Atlanta on Wednesday.....I will update after !!

Starting a wean...wish us luck !

Let the wean begin !!!

     So there is now reason why Joseph can't eat by mouth, other than he won't.  So there in lies the problem.  His weight is good so I am going to see if I can give him a gentle push to eat.  I am going to eliminate his nap time feed of 180 ml of formula and replace it with 120 ml of water (to keep him hydrated).  We started yesterday.  I weighed out food last night (fruit blend) and then weighed it after i had fed him, if you can call it that.  He ate about 4 gm of food.  Today he did better and it seemed to be a little less of a fight.  He had 7 gm of yogurt/fruit blend.  He also was chewing on a sippy cup of apple juice.  I limit the time to 25 minutes for the feeding time and give him rewards for accepting the food in his mouth.  This is going to be a battle of wills, I hope we can get thru this.....

Did you hear the plan ???? 
Pray that I can get this eating thing done !!!

Finally....Tim got his Birthday wish....

So we celebrated Tim's birthday yesterday.   In 2008 we were in the hospital facing Joseph's first open heart surgery.  In 2009 we were planning to move.  In 2010 we were adjusting to me working and Tim being a stay at home dad.  But every year Tim would say, "Maybe next year Joe will eat some of my cake..."
Well this was the year......

Sorry the picture is small, took it on my phone.  He didn't eat a lot but he willingly put the spoon in his mouth several time.....Hope it is the beginning of more....

Before Botox....and AFTER !!!

Thumb hidden in hand...



Notice how fisted his hand is....



Notice you can't see his thumb...


Now the after pictures....

Thumb out of palm....

Amazing....

Relaxed fingers...

Standing at couch....He was kicking left foot and standing on braced foot !!!

Love that little man !!!!



So what do you think???? I think it is wonderful and these pictures really don't show the "whole" picture because he was more interested in camera than anything else.

So is it working......

     YES !!!! The Botox appears to be working.  He isn't quite 72 hours out from the procedure and his hand is amazing.....He actually opened his hand this morning so I could put on his brace.  It was awesome !!!  I will get some pictures soon so everyone can see the difference !!!  Wooo Hooo !!!!

Botox....

     So we had to be at the hospital at 730.  Ugh.....  So we get there, get checked in and then the waiting started.  We met 3 other families with kiddos who were having Botox also.  Two had had it done prior and Joseph and another little boy were having their first time.  So 9 am comes and goes and we still wait...
     About 1030 we went up to another holding room and wait far a bit longer.  Joseph was very good.  I was very proud of him because he hadn't had any feeings since midnight.  So about 1130 or so we get back into the procedure room.  Get the "speech" from the hospital staff and we try to get an IV in him.....then the screaming begins....The nurse was great.  She felt so bad.  She got the first one but his vein was as big as the needle and it was up against a valve so it wouldn't work....second one she got in too but when it was flushed the vein blew....UGH !!!! So she called in the big guns...LOL.
     Enter Joseph's new best friend.....cue the lights....The next nurse came in and she popped one right in....a little bit of Diprivan and Joseph was asleep....It was kinda weird.  He had been crying so he had tears on his face but he was asleep.  I laid him back on the pillow, kisssed his head and had to walk out of the room....cue the tears...only a few.  He was done and awake in about 20 minutes.  Woke up smiling and laughing, shew !!!
     So he got 10 injections and we should see difference in about 2-3 days.  He will get therapy tomorrow and friday and then several times next week.  Man I hope it works.  The two kids that had had it before were on their third time.  The parents said it really helped so that is great...now we wait and see....Thanks for all the prayers and well wishes.  

PS...Just to add a bit.  They had Joseph hooked up to an oxygen sensor during the IV placement and of course during the procedure.  During the screamfest he maintained his sats above 92 and when he was asleep he was 95-97.  Didn't need any oxygen of course...That's my boy !!!!

A bit about eating and a bit about Botox....

     Lets start with eating !!! So the last week or so Joseph has been really interested in food.  I know CRAZY !!! So it started with kosher salt....His Daddy had made potatoes on the grill and used kosher salt, Joseph wanted it so Tim gave him some potato but Joseph pointed to the salt so Tim sprinkled some on it......Joseph ignored the potato but picked up the salt and put it in his mouth.....I know heart kid....salt.....not good combo but at least he did it on his own and he ASKED for it !!!  So next step.....
     A few days later were are having spaghetti for dinner.  So I made Joseph his plate and sprinkled some Parmesan cheese on it.....again he ignored the true food and went for the cheese.  He had it all over and he probably actually ate 1/2 a teaspoon of it !!!! Crazy taste buds!!!  So lets try something else.....
     A co worker found some freeze dried fruit, pineapple and regular apple.  So I got some a crushed it up...looked like the salt and cheese....yup he ate it !!!  So then a few days ago Tim gave him a potato chip and Joseph had licked it till it was soft.  And then he broke off a small piece and put it in his mouth and CHEWED it !!!!  No gagging...No retching.... AMAZING !!!  Baby steps.....


     Now for the Botox....In the morning we will go to UAB Children's to get injections in Joseph's arm, hand, leg and foot.  He will get somewhere between 8-12 injections.  They are going to use Diprivan/propofol to sedate him, no ventilator.  It is likely he will have oxygen during the procedure and anesthesia will be on standby just in case he needs his airway protected.  Please pray that it goes smoothly and as pain free as possible.....I will update on Facebook when we get news.....

A little more history.....



Add caption

 So we came home from the second heart surgery and then celebrated his 1st birthday a few days later.  It was a huge milestone because as you know they said he wouldn't survive to turn one. But he did....
   We continued to have Early Interventions for Joseph.  He was recieving PT, OT, Develpoemental Therapy and Special Instruction.  Prior to his second OHS he LOVED his binkie.  Once he was extubated he didn't want anything to do with it.  he would put toys in his mouth and blankets but that was all.  I started giving him hard thing, pretzels, chips, and cookies. He started to lick them and would occasionaly put it in his mouth.  But that was the limit. And that is about where we are now.  He will scream when we try to feed him with a spoon or offer him a drink of something.  He had a lot of sensory stuff.  He hated to have anything on his hands.  We worked thru that and now he will play in pudding and yogurt.  He will ask for "num nums" but he ends up feeding the cat !!  Oh well, small victories. 
     So now he continues to be 100% tube fed.  He gets his formula but in addition he also gets blended food and juice thru his tube.  So I hope you enjoy reading his journey from button to eating....

More history....

     So we came home.  He came home on Pregentamil formula.  He was getting 90 ml every 3 hours.  It took about an hour and a half to feed him.  I was up all the time it felt like.  He would vomit, retch and had horrible diarrhea.  I was at my wits end.  I had thought he had a lactose issue so I switched his formula to Similac Sensative.  It was the Ready to Feed kind.  He was like a different baby.  Started to tolerated feeds and he gained a pound in about 6 weeks.  So feeding was somewhat under control but his heart and breathing were not.
     So we went back to the cath lab in September.  His right upper vein was 100% blocked again.  The ones on the left were about 60% blocked.  They did some work and got them back open.  We started him on a drug called Rapimune.  It is used fro many different things.  It is in the drug heart stents and was being used in lung transplant patients to help prevent rejection.  It helps to stop scar tissue in smooth muscles, like veins.  So we went back every 4 weeks for ECHO's.  In December he had another cath.  Same story.....same treatment.  Then in January when he had ECHO we knew surgery was going to be soon....
     During this time J started to have other issues.  He was diagnosed with a seizure disorder called Infantile Spasm Seizures.  They think it was due to his stroke but they couldn't say for sure.  Then we got the call......
     February 3, 2009 J went back to surgery to have his repair.  It was a LONG day.  He went back at about 9 am and I was able to see him about 5 pm that night.....but he was having a cardiac tamponade and went back to the OR.  He came back out about 7pm.  Again he had a long recovery.  He was showing signs of a pulmonary hypertensive crisis again when they would decrease his sedation.  But that wasn't the case.  He was having seizures.  He was started on a medication to help.  In the mean time I was able to get a med called Vigabatrin from Canada as it wasn't available in the USA.  We came home from the hospital on February 20, 2009, I started him on the Vigabatrin the next day.  In about 2 weeks the seizures were gone !!! 
     The surgeon that did J's repair was very happy with the surgery.  At about day 3 post op an ECHO was done.  I should mention his lung pressures were higher than his systemic blood pressure.  Lung pressures a suppose to be about 1/3 of that.  That ECHO showed that his lung pressures were half !!!!!  It was amazing....
     Story to continue......

    

And so it begins....a little history

So most of you know a little bit of Joseph's history but for those of you who don't here goes....

     Joesph was born 9 weeks premature.  He was 3 pounds 6 ounces and 15 1/2 inches long.  He spent the first 180 days (6 months) in the hospital.  During that time he had many many issues.  He had feeding issues from the start. He was born at LaPorte Hosptial in Indiana and was transfered to Memorial Hospital in South Bend, IN.  This transfer happened within an hour of him being born via emergecy C section due to low heart rate.   Everything was going good with him until day 13 of life....
     He developed something called Necrotizing Entercolitis NEC.  He went from being on room air to being on a ventilator within 6 hours.  He was very sick.  He was on the vent about 10 days and was extubated back to room air but his lab work just didn't improve.  On March 27, 2008 he was flown via fixed wing airplane to Riley Children's Hospital in Indianapolis.  On April 1, 2008 he had surgery to remove part of his damaged intestine and to place 2 ostomy sites to allow his gut to heal.  I should add he had a pre op ECHO done that was abnormal but they thought it was due to him being ill at the time.  He was very sick after the surgery but recovered nicely.  After he was extubated he had another ECHO.  Again it was abnormal.  He had serial ECHOs done every 7-10 days and they just couldn't figure out what was wrong with his heart.  During this time we started to feed him via NG tube.  He started dumping everything he was fed plus more out his ostomy.  He would get fed 15 ml every 4 hours and he would have 60-120 ml dump out.  He was on TPN for a total of 5 months due to this.  The GI surgeon had the cardiology group look at all of his ECHO's. 
     On of the cardio doc's came to the bedside and did another ECHO and told me "I think I know what it is but we need to take him to Cath lab to make sure...."  On May 15, 2008 Joseph went to cath lab.  During the procedure he suffered a Left MCA Stroke.  But it took us a few days to find this out.  We almost lost him after this cath.  He went into a full blown pulmonary hypertensive crisis.  His heart rate would drop to 50's over and over again.  Finally they sedated him until he could take back over.  We got his diagnosis....Pulmonary Vein Stenosis, 3 of the 4 vessels, severe pulmonary hypertension, PFO, and dialted Right ventricle.  We were devastated.  We were told that we would be lucky to have him for a year.....
     So we got him recovered from the cath and found out about the stroke.  We started looking toward a repair for his heart.  He was still very small and the heart surgeon wanted him to be at least 4 kilos....we didn't make it before he had to go to surgery.  He had his first heart surgery on June 27, 2008....again we almost lost him.  He was on about 12 IV meds and he was on the highest level of Nitric Oxide they had ever put a premie on.  I stayed at his bedside for 10 days before I would leave.  He was extubated after about 2 weeks but then we had withdawls from the narcotics.....HORRIBLE !!!!  The surgeon wasn't able to do the repair because Joseph's body and heart was still so small.  So we started the healing process all over again.  He still wasn't tolerating feeds, still on TPN and he wasn't growing like they wanted him too. 
     About 6 weeks after his heart surgery we went back to the OR to have his GT placed and to have his intestine put back together.  He also has his appendix removed at this time.  We started feeding him small amounts to make sure everything was ok.  About 2 days after he had his first poop in several months.  He worked up to full feeds in about 4 weeks.  We came home August 23, 2008......Stay tuned for more !!!