Oh...I almost forgot - great news about his G-tube

His G-tube has been removed! With all thats been going on in our lives, I guess even something this significant can be overlooked. Last Friday during a visit with his GI doctor, she recommended that the port be removed. I didn't know that that meant right then and there. Christina was asked to leave the room when it was done ( I was with Corinne in the waiting room). After a few minutes he was done. No anesthesia, just a good hard yank and it was out. We were told that there could be a little blood and some oozing. Sunday night I ran to the local ER because it looked like a frikkin gunshot wound! The neat little hole was oozing blood and stomach acid and soaking his dressing. It was the sixth time I changed the wound dressing when it looked like something out of Saving Private Ryan and said "screw it" and went to the hospital. After being admitted quite rapidly at St. Joseph's in Bethpage I was told that there was nothing to worry about - it was quite normal. Jeez, if thats normal I'd hate to see abnormal. Anyhow, now that it has been closing on its own, it is looking better and better. I am just using light gauze at the moment and there is no more oozing of acid or blood. One more chapter in his life is ended. Time to write a new chapter.

Six Weeks in Exile

It has been more than six weeks since we were banished from our home because of Hurricane Sandy. We have adapted to living in a hotel room - although it is far from ideal. Jacob does not seem to mind the change anymore. In the month since my last post we have arranged for Jacob's therapies to be given at the hotel. He has been fitted for and received leg orthotics. He is now getting used to moving around with the new orthotics. He is trying his hardest to stand on his own. I will just put him on the floor and let him explore. He is quite inspiring to watch. He does not let his handicap stop him from getting into trouble either. He and his sister will go into the kitchenette when no one is looking and start digging through the cabinets, ripping up the paper towels, trashing the napkins and other loose items.
We recently visited the school where he will be sent to when he becomes two. The Little Village School in Seaford appears to be ideal for his condition. He will start going for a couple of hours a day and will get much needed social interaction.
Things remain up in the air as far as returning to the house. Work is progressing slowly and there is a problem with contaminated soil under the house that has to be removed at much expense. The estimated move date has been pushed to about New Year. Christmas is going to be "different" to say the least.

Difficult Times-Difficult Child

Jacob is very used to his routine. Three times a week, he expects his therapists. He plays downstairs with his siblings every day. Breakfast, lunch and dinner are pretty much at the same times daily and bath time and bed time follow. This year a were greeted by a very nasty surprise. Hurricane Sandy swept up the East Coast and blasted the Northeast. A 14 foot storm surge deluged my neighborhood destroying the ground floor of my home and Jacob's little world. Today is Tuesday, November 13, 2012. It has been 2 weeks since Sandy hit. Jacob has not seen his doctors nor had his therapies since then. We have been displaced from our flooded home and have been nomads for a fortnight. We first rode out the storm in my mother's house away from any rising flood waters. After returning to the disaster area that is my home we relocated to emergency shelter in a rundown flop house. We were a family of five in a tiny room with no electricity or heat. We were saved after a week of this by a close friend. After rooming with her for three days, we got a room at a national extended stay hotel. It's even got that 'lectricity! However, we are still 5 people in a hotel room. Really cozy. This has been a difficult time for all of us, especially Jacob. He has been torn from familiar routine and cast into chaos with the rest of us. Out of the 5 of us, he is the most stressed. He will sit and cry for hours on end because this is not his home. This is going to be a trying time for this family. I just hope we will still be in one piece after this is all over.

A Day in the Life

Jacob has his good days and his bad days. The past couple of days have been difficult - nothing serious, but just growing pains I guess. He gets very jealous of his sister sometimes and he lets you know it loudly. Once he gets going, he can be in a pissy mood for the rest of the day. He has been pissy all weekend it seems. I also think that he gets frustrated in the fact that he has limited ambulation and tries so hard to play like Corinne.

On the positive side, he has started eating with a fork. I couldn't believe my eyes when I saw it. He is very particular about it too. If I feed him with the fork - he spits it out. He will only eat it if he feeds himself. Today after their bath, Jacob used his weak arm to help push himself to a sitting position. This is the first time I have ever seen him use his arm this way. He just keep surprising me at every turn.

Jacob and Corinne are very close, almost as close as I was to my own twin. Corinne can be hard to put down at night, but put her in Jacob's crib for half an hour or so and she calms down enough to go nighty-nite.

He is growing up so quickly. While he is still behind in many ways, he is achieving things that I did not expect. It was said that he would be walking by age two. I did not believe that, but I no longer think it is impossible. Where there is a will there is a way and he has shown quite a will.

Forward Progress

Jacob is making great progress. He now sits up readily on his own and can just as easily lay back down without thumping his head onto the floor. This may not sound like a great accomplishment but think about it in terms of yourself: You have little control over your entire left side of your body. Try getting out of bed, putting on pants or even feeding yourself. Any new accomplishment would be worthy of cheering. Jacob's therapist (PT) has created 2 braces for his left arm and wrist. He wears a full-arm brace to keep his left arm straight while he sleeps and the wrist brace helps keep his hand from clenching tight during the day. He is already showing more use of his hand and arm due to the use of these braces. Next on the list are foot and leg braces. He is so eager to walk and chase his brother and sister. These braces should make it easier for him to maintain balance and stand on his own - then on to walking. Even though Jacob has been through Baby-Hell and back again, he seems to be in good spirits most of the time. He has a laugh that makes you grin from ear to ear And a charming smile to match. He is really starting to show a true personality. Next post - pictures - I promise.

First Sit-up!

Today, after his bath, Jacob completed his first sit-up! I had very light pressure on his left leg as he did it, but this is still a milestone for him. I am so proud. He was also showing off his range of motion on the floor today as he was scooting and "inchworming" around to his toys.

Doctors' visit

On Friday we visited with both doctors Better and Lazare. I am proud to say that both of them were absolutely shocked when they saw Jacob. They were totally caught off guard that his hair is almost totally blonde and that he looks so plump. They hadn't seen Jacob in three months and were pleased with his apparent progress. Jacob was not very happy with the idea of going for a doctors visit. I as soon as we opened the door to the building he started screaming his head off. He screamed continuously for an hour and a half. I'm sorry to say that he doesn't care for medical staff types at this age. I wonder what he remembers about the first half of his life and the lengthy hospital stays. Anyhow, we eventually got some readable ultrasound results after he passed out from all of the screaming. Dr. Better said that his heart was beating quite strongly and would no longer require the Digoxin. One less medicine is great. He is still on baby aspirin and Enalipril though. The next visit was with Dr. Lazare. Since we no longer use the feeding tube and pump we were hoping to get the GI port removed. She felt that it should stay for a few more months just in case. Both doctors are pleased with his progress and that makes me feel a whole lot better.

Jake's Summer of 2012

In the past months that Jacob has been home he has been ever so slowly increasing in size and physical capabilities. You can see it in his face that he really wants to get up on his own and play with toys. His sister appears to be his 'enabler' when it comes to toys. She will bring him every toy in the room. We just have to have her stop dropping them on Jake's head. I am addicted to Jacob's laugh. His giggle will light up an otherwise dreary day. After work it is a most welcome sound. His serious health issues appear to have slackened off for a while and he is just having normal toddler issues now - you know - screaming, teething, throwing dinner on the floor then laughing...all the normal stuff. We have totally abandoned the tube feeding port in his belly. We are hoping to have it removed a the time of his next procedure. That being said, we have no idea of when that will be. His next cardiology appointment is this Friday. I am sure that there will be good news as he has had no signs of heart trouble or serious cyanosis. Sure there is a little cyanosis as there is still some mixing of the oxygenated blood and the venous blood, but you can rarely see it. All in all, Jacob is having a good summer. We take him to the park, the beach and the pool. He absolutely loves the pool. You know, the kiddie pool as it is really nice and warm. I wonder how it got that way? Anyway, I hope your summer is as trouble free and pleasant as ours.

It's been a while...

It has been quite some time since I have posted to this blog. Quite frankly, there hasn't been all that much to write about. Jacob's progress is painfully slow, but slow progress is better than no progress. One update is about his nursing care. After we won many battles about keeping an at-home nurse we finally lost the war. As of June first, no more nurses. The next fight is to see if we can keep the 3-day per week therapies going. I have been feeling a bit down lately because of his apparent lack of progress (at least as far as I can see). The therapist promised that he would be walking by the age of two. I really don't see that happening. Right now he is crawling on his back like an inchworm. I see him trying to sit-up on his own, but it usually results in a roll-over. His muscles are just not working for him on the left side. I hate posting this depressing stuff but this blog is supposed to be a reflection of my feelings. I have been feeling quite blue lately. I am looking at an uncertain future and I find it most disconcerting. On the bright side, Jacob has been drinking more with his sippy cup maybe allowing us to discontinue his nightly feeds with that damn feeding tube. Jacob, by the way has become quite adept at yanking the thing out and allowing the formula to pump out all over him and his bed almost every night. Tonight I am trying something new to keep the tube from getting yanked out - super glue! You know I am only kidding, but with the frequency at which he pulls his feeding tube out, super glue is still a viable option. He's lucky he has a cute smile. I'll try to post more often, but as I said, there really isn't much to write about sometimes.

Marc Dawson - You are a hero and you will live on forever

It was 17 year-old in Huntington, New York preparing to become a Navy SEAL that saved my son's life before Jacob was even conceived. The story of how he did this is both tragic and inspiring.
February 2008:
Marc Dawson is a lifeguard at the Huntington YMCA pool. He is aspiring to serve his country by becoming a Navy SEAL. He is testing himself by holding his breath underwater. He blacks out and starts to drown. By the time he is pulled from the water he has suffered severe brain damage. Marc Dawson is gone.  His parents, Ray and Dianne, are confronted with the option of donating his organs. At first they are horrified but later decide to turn this tragedy into salvation for a select few. Marc's heart is transplanted into the chest of a dying doctor.
Doctor Charles Kleinman was considered to be the Father of perinatal cardiology and was suffering from a heart that was ravaged from earlier cancer treatments. He received Marc's heart only hours away from death. Dr. Kleinman, while only part of a great staff at Children's Hospital of New York, was a very special man to his patients and their parents. He had a bedside manner that made you feel better just by talking to him. He always had a kind word or two. Even though he was one of the most highly regarded doctors in his field, he was never arrogant about it. He really made you feel special. He was a man that saved children's lives for a living - and he loved his job. If it were not for Dr. Kleinman, Jacob may not have made it into this world.
On October 11, 2011, Charlie Kleinman lost the battle with his health. The world lost a great man. In the short amount of time that Dr. Kleinman and Marc were united, many childrens' lives were affected and many families benefitted. This is how Marc Dawson, 17, from Huntington, New York helped save my son's life.
To Charlie and Marc - Yor legacy will live on forever in the children you have helped save and the children that they will have themselves. There is no greater task than that of helping children. Rest in peace.
To Ray and Dianne - No parent should have to bury a child. Your selflessness and insight may have save the lives of dozens of babies and children. My son, Jacob, is one of the many babies that were saved. Thank you.
To the staff at CHONY - you know who you are - Dr. Kleinman is not the only angel in the hospital is he? Thank you for your warmth, courtesy and professionalism. You made a huge, sterile, New York hospital a friendly and welcome place.

Missing post

Yesterday I wrote a post regarding my son's doctor and his transplant donor. I don't know what happened to it but I am going to try and recreate it. I think the Android Blogger app has a few bugs in it. I know a couple of people saw the post before it vanished but here we go again.

Home care extended

We knew that sooner or later the at-home nursing would end. Today was that day. Christina put up a really good fight and got a 13 week extension. The great thing about the extension is that it brings us closer to the 18 months Jacob needs to be enrolled into UCP Nassau. Jacob is looking healthier by the day - he is turning into a little cherub. His eating habits are improving daily thanks to the nurses and therapists. Tuesday was Cheryl's last day with Jacob and her help with the feedings will be sorely missed. His other nurse, Daphne, was telling me that she was getting Jacob to stand on both legs for about 15 seconds at a time today. This may not sound like much but remember that he is partially paralyzed. This is a very positive sign that his brain is trying to "rewrite" his nervous system. The twins have been a little under the weather this week but nothing serious. Corinne has congestion and a cough and Jacob has been vomiting occaisionally. Christina was a little sick too. It has been a blessing that things are calm with Jacob and there have been no emergencies.

Happy First Birthday

One year ago today we were blessed with the arrival of Jacob and Corinne. I can hardly believe that it has been one year already. Sometimes it feels like an eternity has passed and other times, only a few days. There has been a lot of stress and many emotional upheavals and I am sure that I have aged more than 365 days this year. People still say to me, "I don't know how you guys do it." You know what, neither do I. Sure, its tough, but there are plenty of rewards as well.

FOOD FIGHT!

In a previous post I mentioned that feeding Jacob by mouth was challenging. I was wrong. Running a marathon is challenging - this is next to impossible! Every bite is a struggle. He winds up wearing most of his food. Christina seems to have the patience that I am lacking for this. If it were up to me, he'd be getting formula via the g-tube until he was old enough to buy food on his own. I am saying this out of frustration of course, but seriously, I was not expecting this. We have had a blessing in one of his nurses. Cheryl is a feeding specialist and she really knows her business. Jacob has come very far with Cheryl as far as eating goes. While I still lack the patience, both Christina and Cheryl can feed Jacob an enitre jar with relatively little bloodshed. When Daddy has to feed Jacob, there will be tears - and lots of high decibel screaming. OK, so after I stop crying and screaming, Jacob usually gets about half a jar of food down the hatch and a fresh change of clothes. We have cut back on the nighttime g-tube feeding so he is hungry when he wakes up. This has actually worked out pretty well. For the last few days, he has been eagerly awaiting his breakfast. Its still a mess, but this is a positive sign. Cheryl has been teaching us all of the tricks. He does really well when he is distracted. If we distract him with Wonder Pets (his favorite show) he doesn't put up much of a fight. With the aid of Cheryl and the patience of my wife, maybe I will see the light; until then, practice, earplugs and a large drop cloth.

A rough week with a happy ending

This past week was a little rough for Jacob and his parents. He started to vomit at least once every day. I started to get very concerned. We had recently increased his feeding rate from 55 ml/hr to 70 ml/hr. Thinking this was the problem, we reduced the rate back to 55. This did not work. He has had the same feeding tube since he has been home. This could also be a source of the problem. I have been cleaning it in hydrogen peroxide but that didn't seem to do the trick either. Today, this all seemed to stop. He has a new nurse that specializes in feeding issues. She has gotten him to eat real solids from Cheerios to chicken - and he has held it all down. Maybe it is time to only give him a few feedings via the tube and really hunker down and concentrate on the oral feeding. It is so hard when he fights eating though.
On another up-side, Jacob's physical therapist called me at work when he heard that I was becoming despondent about his ambulatory progress. He guaranteed me that he would walk and have extensive use of his left arm. He also said that the progress was all up to him. He has proven himself to be a fighter already so I think he will do well.
I had promised some photos, so please enjoy Jacob's first Christmas photos.

A Happy New Year

This New Year is already starting out better than the last year. Jacob's therapists are very happy with his progress. The focus now is on his feeding. No one wants Jacob to be on his feeding tube forever. Jacob is going to have to learn to eat even though he makes it quite challenging. As it stands now, he tolerates one half of a jar of baby food at a time before he throws a fit. Is he tired? Is he just lazy? I wish he could just tell us but he can't. We have had great success with the nursing staff too.  We started using a new agency and they seem to have much better management and really run a tighter ship. I feel that he is getting very good care from his nurses. On the down side, he still is not rolling over on his own or making any apparent progress with his left leg. I know he will eventually be ambulatory but I can be a bit impatient. He was having some trouble last weekend with vomiting. He got a clean bill of health from the pediatrician but I was a bit concerened.  He seems to be all better now. Let's see what the rest of the year has to offer. A lengthy visit to the hospital would not be welcome this year.