Ok, dudes, literally as I was clicking publish on the last post, I got a call from PJ’s social worker. The place that she and I left off from our conversation last week, was that I did not feel ok about Piper going to Albany, and that I would probably withhold consent, appeal it, etc.. Which really sucked because it is so important for me to maintain a good relationship with Blythedale after how amazing they have been to Piper and to us. After stating my position, I told the SW that I didn’t know what to do, and asked her if there was anything further she could do. She said that she would speak to the director and get back to me.

Apparently the discussion went very well. Blythedale has agreed to keep Piper until Seton’s new facility opens (in Yonkers, accessible by metro north), but that Piper’s name will remain on the list at St. Margaret’s (in Albany), as a contingency. All I can say is, miracles happen. Seriously, thank you so much everyone who was brainstorming with us about how to resolve this situation. We are elated that Blythedale has been gracious enough to compromise this way. Now we will just keep our fingers crossed and pray that she can slide right into Seton when the new place opens early next year.

I seriously feel like I just lost 90000 pounds.

Who else is that smiley with an earful of suds? The previous sentence is as far as I got, Sunday afternoon, when I tried for like 3 hours to initially draft this thing. We have had some sort of crazy stuff happen with Piper, over the last week. She is doing fine. But, because of the lack of long term facilities in the NYC area who care for vent dependent children, Piper may have to move to Albany. Reagan explained it pretty well over here. It was a great post. We have had such an overwhelming response that the traffic spike caused the server to fail. So, that coupled with an inept hosting reseller caused her page to be down for most of the day yesterday (and mine, actually).

For those who are interested in the details of what is happening, and why, here is a letter* that I wrote to our state senator on Friday:

Dear Senator,

I am writing you today to ask for your help in keeping my family together. We are about to be separated because of inadequacies in the NYS long term health care policy.

My daughter Piper was born to my wife Reagan and I in 2007 at Columbia Hospital. She has a rare congenital health problem which requires her to be on a ventilator. After a miraculous birth and spending several months in the NICU and PICU, she was discharged to a rehabilitation facility in Westchester County. She has been declared disabled and is currently covered by SSI. Although she has fought an uphill battle her entire life, Piper has made great improvements at the facility where she is now. But, every time she makes enough progress that she is considered stable, she must be referred to a long term care facility. The fact that she must go to a long term care facility is the problem per se. The problem is that the closest facility licensed to care for children on vents is over two hours away from where we live.

Our daughter could also be discharged to our home, but the current financial situation of my wife and I doesn’t allow for it. We currently live in a 5^th floor walk up in Washington Heights. In order for her to be discharged to our care at home, we would have to live in a more modern building with backup power and an elevator. Unfortunately, that type of move is not fiscally possible right now.

The only long term care facilities that are currently licensed to care for vent patients (according to our daughter’s social worker), are far from New York City. One is in Albany, and the other is in Smithtown. There is currently one facility in the City which has 4 long term beds, but they are moving to Yonkers and will not be accepting any new patients until early next year. Even when their new facility does open (scheduled for next January), it will only have a few additional vent beds, and there is no guaranty that Piper will be admitted there.

We recently found out that the place in Smithtown is also now out. Since our daughter is beginning to learn to walk, she would need one-to-one care, which they are not set up to provide. This makes the only long term care option for our daughter, a facility in Albany. We have been told that our daughter will have to move there next week. As I’m sure you are aware, Albany is not a short distance from NYC, not even Washington Heights. We will now have to travel over two hours to see our daughter.

It seems very counter intuitive to me that the facilities licensed for vent children are so far away from the most highly populated area in New York. Despite having our daughter live at Blythedale Children’s Hospital in Westchester for most of her life, my wife and I have been able to maintain a meaningful relationship with her. My wife has been able to arrange her work schedule so that she can travel to visit 4 times per week. I visit her on the weekends. Although not ideal, the 40 minute drive to Blythedale (which is not accessible by public transportation from NYC) is manageable.

Blythedale is currently being remodeled and will be much larger in the short future, but is not licensed to receive SSI funds from the State for long term care. From what I have been told, Blythedale applied to the State for the license, but was denied. Apparently the reason that NYS gave was that there was not a need for more of such facilities. I can say from my own experience that this is not the case.

On two prior occasions, our daughter was sent to a facility in New Jersey called Wanaque. This is the only facility in NJ (from what I’m told) that NY State will allow SSI funds to go to, for NYS disabled kids. There are at least 3 other families that we know personally, who live in NYC, but have also had children discharged to Wanaque. Both times that our daughter was admitted there, the level of care was so low, that she developed pneumonia and almost died. Luckily she was close enough to Columbia that she was able to be transported and cared for by her pediatric doctors that have known her since birth.

If a similar situation were to occur in Albany, she could be dead before we are even able to arrive at the hospital.

I understand that in most cases, vent dependent children who are in long term care have very low cognitive function and as such, do not normally have meaningful relationships with their families. But in our case, we have a very meaningful relationship with our daughter. She is our only family for 2000 miles. And now she is going to be shipped off to rot in a facility upstate because of a systemic inadequacy.

I don’t know if there is anything that you can do, but any efforts in our behalf would be greatly appreciated.

Regards, Jacob Breinholt (on behalf of myself, my wife Reagan and our daughter Piper)

*I have since regretted publicly posting this letter because of one Joy MacMillan. Apparently it isn’t completely obvious that this letter is a very brief overview of the situation. When I wrote the reference to the “fiscal” impediments of moving, it was an easy was to sum up a lot of very complicated factors. I applaud Joy, that she was able to find a living situation that worked for the her and her family. I apologize if my letter gave  the wrong impression about our priorities and family values. I know how easy it is get get judgy, especially when I don’t have all of the information.

Lesson learned. I’ll stick to the less personal stuff from now on.

So, yeah. There are still some things up in the air. There is also an appeal process. Reagan and I are still trying to figure out the best way to handle this situation. All of the support and kind words have been sincerely appreciated. Here are a few more shots from the weekend:

These are some fun ones that we shot this weekend.

The theme for this weekend was braids. I was the only NY Breinholt who wasn’t rocking braids, and I’ll be honest, I felt a little left out. But, I was perfectly content to just hang out with those b-holts who were rocking the braids, and to snap a couple of shots of said braids. Piper was in a super smiley mood on both Saturday and Sunday, which makes the visits so much fun. Here are a couple of shoulder ride shots that Reagan snapped, of Piper making various profound gestures at the ceiling.

Another one by Reagan, of Piper finding something she sees outside very humorous.

…and just having some Mom time.

Reagan wasn’t working today, so we picked up and visited Piper together. We arrived right around lunch time. So, what better idea than bring Piper to the dining room for lunch? She was getting her little lunch through her G-tube while Reagan, Sam and I had boring normal people food. Above: Sam keeping Piper occupied while Reagan was getting some grub. Below: Reagan teaching Piper about soup.

No lunch is complete without a post-lunch tickle session.

Skip backward a day. Sam trekked all over the island with me yesterday helping me get some art shot. Here are a couple that I snapped of him while we were shooting the Parla exhibit at Wolkowitz, before the opening.

Sam, getting it done–

Yesterday, incidentally was also Sam’s birthday. We sort of a birthday lunch, but after such a busy day, he was a bit too worn out for us to really take him out and abuse him. So, tonight we are going to make merry. Here is a shot of Reagan very intently making him some birthday cookies this afternoon.

Later this weekend, I will announce the exciting results of giveaway numero uno. Have a great weekend!

I hadn’t shot anything with the Polaroid for a while, so I brought it along with me today and snapped the item above. Poor lil’ PJ wasn’t feeling like herself. So it wasn’t the best visit. But, it was still nice to see her.

The long weekend was a lot more blah than I was hoping it to be. I did our taxes, confirming my suspicions that we owed a lot. The weather was cold, windy and gross. Then to top it off, we got more snow on Monday (above).  Don’t get me wrong, the visits with Piper were great. In fact, she did something that really made me proud. She totally dismantled a little toy piano (in the foreground, below) that Reagan got for her a few months ago.

Luckily, I was able to put it back together. Piper wanted to help, so bad. Reagan had to really restrain her. Hahahah.

Anyway, today I have decided to cast off the blah. I woke up super early and took Greta in for her 90 Day service. The poor girl was already starting to fall apart on us (slowly leaking tire and malfunctioning touch screen). So, she will likely be in the shop until Friday. Then I came into work super early and was able to get a jump on things. Even though the temps won’t break the 20′s today, it is supposed to get gradually warmer as the week wears on. I’m hoping to take advantage and put a few more km’s on my running shoes before our first race, coming up in March.

Things to look forward to: 1. Sam (my brother) will be back here in a week; 2. MotoGP 2011 season now starts in less than one month; 3. After we pay taxes (probably later this week), we can start planning a spring vacay.

Piper was in a grand mood when we saw her on Saturday. She was smiling at just about everything. We took her on a little walk to one of our favorite little nooks on her floor. Reagan snapped a couple of photos of Piper and I messing about. They are probably some of my favorite shots of me with Piper, to date. So, thanks Reagy.

For whatever reason, Piper thought that being on my shoulders was the funniest thing ever.  She was cracking up, the whole time I had her up there. Most of the time she had a handful of my hair in her little fist, to make sure she felt safe.

Of  course I snapped a few of my girls together, also.

I have had yesterday and today off of my normal job for NYFW. Today, I’m not shooting anything until the evening. So, I had the morning to hang out with my two favorite girls. Piper was being cuter than ever, all morning. She was smiling about everything. She was showing off her walking skills (below) and made a valentine, too. She even colored on my leg a bit with the marker. Lots more photos over here.

Piper was in a great mood this weekend. She got to tryout a bunch of new clothes, including some awesome new digs from South Africa, from our friend Maggie. Reagan has photos of those, and I’m sure will be writing about it soon. Sunday, Reagan had Piper in this little sailor outfit, that she picked up at a thrift store during one of her trips abroad last month. It sure was cute on her. But apparently she was having a reaction to it. Because, once she had it on, she was scratching non-stop. Even the socks on the hands weren’t mitigating. We hurried and changed her and gave her some benadryl, which eventually seemed to help. Poor little squirt. A few additional shots below: