Friday, June 26, 2009

Trying desperately to make lemonade!

It seems we have received some lemons.

Back in February, Nate and I took a tour of the most recommended special needs day care program in our county. It was ok, and we put Will on the waiting list for September, when Oma goes back to Texas. We were told at that time that placing him would be no trouble, and after all, we were on the waiting list.

In the past month, Will and I took a tour of another center, just to test the day care waters. The center we toured told us that they couldn't be sure they had a spot for him, but things looked promising and they didn't see his needs as being a show stopper. They asked for a month to work things out. That month ended yesterday.

True to my typical form, I called them on the planned day. In the nicest way possible, the contact person told me that after convening, they had determined that they could not handle Will's needs. Bummer, I thought to myself, I liked this center better, but its ok. We're still good to go with the first center from back in February.

So I called to make sure. Good thing, too. All of a sudden, they are full with no potential openings in September. The waiting list doesn't matter. But "they'd call me tomorrow if anything opened up." Super (sarcastic)! I can totally sit back here and wait with no placement for my son, while you figure out if you can honor your commitments. No thanks.

I enlisted the help of our service coordinator and found out that there are two other special needs pre-schools in the county. I called the first, explained our situation. They almost laughed at me, and told me that they had a 40 kid waiting list.

We have one last hope, and have a visit with Will next week. They have to first determine if they can appropriately meet Will's needs. If they can, it appears as though we have a good placement. If they can't, we don't have any day care options for him.

We really want to put the boys in a day care program in September. They'll be 2 and a half then, having been nurtured and cared for in the home by two lovely women since birth. Its time to be socialized with other kids, start structured learning, etc. Our plan is to put the boys in two separate centers, since it really seems as though Will is more outgoing and talkative when Luke isn't around. Luke should be fine anywhere, and there are a lot more options for placement for him.

I guess if worse comes to worse, we can find someone to come into the home and care for the boys (or just Will) when Oma leaves. Will will be accepted into the county's special needs pre-school at the age of 3, in March 2010, anyway and would go to the local elementary school for full day pre-school. But I was hoping to give him a little time to get used to a different environment, by warming him up in a day care environment. Wish us luck next week... and if anyone has any other ideas for us, please send them to me at!!!

Wednesday, June 24, 2009

Not entirely bad

OK, so now that I have had a couple of days to reassess the situation with our Father's Day weekend debacle, I have come to the conclusion that it was not really all THAT bad. It wasn't great by any stretch, but there were some fun times.

So, please take a walk through our Father's Day weekend at the beach through a Slavik photo montage below!

The boys getting packed up and ready to go to the beach on Saturday morning

Luke and Nate, introducing Luke to the ocean for the first time

Perhaps the only smile seen on Will's face the entire weekend, when we first got to the beach

Luke LOVED the ocean, especially the waves when they would almost knock him over. Shortly after this photo was taken, he got really brave and started yelling "bring it on!" to the sea.

We had a nice (but warm) outdoor patio dinner at Elijah's on the Wilmington Riverfront. Luke tried shrimp for the first time, though he ultimately liked the cocktail sauce better... until the horseradish got to him, and he started yelling "hot, hot, hot" and looking to Daddy for a cup of ice water.

Will FINALLY fell asleep at dinner. It was good for him to rest, and good for us to have a moment of peace.

After a night of little rest, Nate and I decided to skip his Father's Day brunch and head home. Not before Luke attacked the hotel elevator one last time (yelling "ding!" at the top of his lungs)... he even got ahold of the "assistance needed" button in the elevator several times. Our answer: Sorry! Two year old.

Will was all smiles on the way home, even enjoying a rousing game of "get the neck roll off of your head" while Nate and I scarfed down Dunkin Donuts. We tube fed him all the way home, to make up for some of the vomit he gave to Nate for Father's Day.

Speaking of tube feeds... we had Will's 2 week post-op appointment today for his g-tube surgery. He got his steri-strips off (no stitches to take out, though, since they used disolvable ones) and they told us everything looks good. He has gained weight since the surgery, so thats good news!

We talked a lot about Will seeming uncomfortable (though not in pain) and our family not getting much sleep over the past two weeks. We still have to figure out exactly the feeding regime that works for Will and for us. Will has always been a belly sleeper, and his belly isn't feeling 100% normal, so chances are, he isn't ever really getting into a deep sleep. We had a good night last night, though, so we're hoping we can keep trying to do the same type of routine (slow tube flow, starting Will out on his back, half way through the night, turning the feed off and letting him sleep on his belly without the tube poking him all night) tonight with the same luck!

Sunday, June 21, 2009

Long weekend (not the good kind)

We hope that all the fathers out there had a super Father's Day. The father in our house had a weekend at the beach that can be summed up in one picture.

Yes, we had a tough weekend. I had planned out a little 1.5 day trip to Wilmington to spend the day Saturday at Wrightsville Beach, the night in Wilmington for dinner, and then have a great brunch in Wilmington today before we drove home. I could not have foreseen that Will wasn't going to sleep the night before we left, wasn't going to nap on Saturday, and was going to have another tough night last night though!

We tried to make the most of the weekend away, but it was tough. We aren't sure if Will's in pain from his surgery two weeks ago (he doesn't seem to be, but at this point, I am wracking my brain for anything that could be going on), if he's started to cut his 3 year molars, or if he really got used to being cuddled at the hospital. He just wasn't happy unless he was being held in an upright position, while you were moving around. Laying down with him wasn't an option. Standing still wasn't an option. Being near the ocean made him cry. Oy. We just couldn't win.

Whatever this is, though, has made for a long two weeks around here since Will's g-tube was placed. We have our two week post-op surgery appointment this week, so we'll be having a long discussion with the surgeons about this. Think positive thoughts that Will sleeps tonight!

Monday, June 15, 2009

Giving new meaning to the words "stud finder"...

I guess all boys like toys... we were hanging things in the boys' room this weekend and kept Luke well entertained in Will's crib by handing him (safe) tool after tool. He definitely liked the beeping and lights that the stud finder made!

Saturday, June 13, 2009

All together now!

Will was officially released from UNC yesterday afternoon. We were able to successfully manage his pain with oral medications, so they sent us on our way with a fistful of prescriptions, a Kangaroo pump, and a ton of supplies! We had a difficult time filling the prescription for Oxycodon... apparently all of the CVSes in the Triangle area are on a manufacturers back order for the drug. Odd. We had a couple of technical difficulties last night with the Kangaroo pump, but we got things all worked out and used the pump overnight to feed and medicate Will.

Will seems a lot happier being back at home and Luke is happy to see his brother again. There were times this week where Will would have a really tough time with pain, and when I'd talk to my mom later, she would tell me that Luke woke up from a dead sleep - screaming - at (what turned out to be) the same time that Will was crying his hardest. We haven't had any of those "twin occurrences" that people talk about before now, but then again, they haven't ever been separated for this long before either.

Though not the best photo of any of us, I am posting a pic of me and my boys at Will's discharge yesterday afternoon... I was so happy to get out of there! Luke was distracted by a nurse walking by (such a boy) and Will was sick of the camera in his face yet again!

Oh, and guess who's already up to 24 lbs?!?! Will weighed 23 lbs before the g-tube surgery... so this is progress, and a definitive reminder that this was the right thing for him!

Thursday, June 11, 2009

How do you Kangaroo?

Prior to March 2007, if you'd asked me what a kangaroo was, after arching one eyebrow and looking at you funny, I would have answered "an Australian marsupial" (also, a common noun - but just for the benefit of this story).

If you'd have asked me the same question prior to June 2009, I would have told you that "kangaroo" was actually a verb... its a NICU activity wherein you hold your unclothed child against your naked chest to encourage a calmer, more controlled breathing pattern and parental bonding. See the example of the verb kangaroo below, me and Will circa late March 2007.

Well now, the former Australian marsupial and naked hug has yet another new meaning. From now on, a Kangaroo is actually a proper noun... the brand name for Will's new feeding pump. See the pic below if Will this morning in his hospital crib, testing out his new Kangaroo and feeding tube.

So things are looking up here. The 36 hours post-op were a little rough going. Will was in quite a bit of pain after his feeding tube surgery. Finally late last night, we were able to take Will off of morphine. He's now getting ibuprofin every 6 hours and seems to be doing well on that. Additionally early yesterday afternoon, Will was changed from NPO (which somehow in Latin means "no food by mouth") to allowed to consume clear liquids. After he tolerated clear liquids for a while, he was allowed to start trying out the feeding tube - first with clear liquids, and then a slow flow of Pediasure.

He's been doing super ever since! He's playing with toys and parents, and flirting with nurses... back to his pre-op self. Its good to see him back. They are slowly working Will's tube feeds up to his routine feeding rate that we'll have at home, and once he tolerates that well and gets back to his normal mouth feeding pattern, they'll send us home with a Kangaroo and a couple of visits with a home nurse. We're anticipating our discharge sometime tomorrow, Friday.

Can't hold me down! Despite all of Will's monitor lines and a new IV in his foot (hence the large white board on his left foot), he was in no pain last night and resumed his kicking!

Tuesday, June 9, 2009

Post-op notes

Just a quick update to let you know how today went... we woke up bright and early this morning and gave Will his second Steri-soap bath and made it to the hospital to check in at 6:30a. It was nice to be the first scheduled surgery of the day, as once we checked in, we were immediately greeted by our surgery nurses, anesthesiologists, and then within minutes, the surgeon was ready.

We felt no fear going into this surgery, so the hour long surgery wasn't nearly as bad of a wait for us as surgeries-past. We went down to our regular surgery waiting spot, the UNC Hospital cafeteria, and got some breakfast.

We got back up to the pediatric surgery waiting area just in time to see our neurosurgeon - though of course, he wasn't there to see us!! We talked with the parents of triplets for a while, one of whom was being evaluated by neurosurg today. We thought having twins was rough! It was nice to pass the time talking about our children and various experiences that having preemie multiples share.

Within minutes, our surgeon was calling our name, and told us that everything went really well with Will's surgery. Nothing unexpected, and we could see him soon. When he woke up, I went back and saw him (only one parent allowed at a time)... he wasn't really a happy camper coming out of anesthesia. We sang "Michael, Row Your Boat Ashore" about 800 times, and then Nate stayed with him until they had a bed ready for us on the 5th floor of the hospital.

So we've been up here for about 7 hours now, and Will's been having a rough go of it... he appears to be in more pain than we expected, and the order that the doctor wrote for Tylenol just isn't doing the trick. We tried a narcotic pain medicine, but Will was still huffing and whining, which is an indicator of pain. Every time we tried to pick him up, he would cry - I think because the new g-tube area is still very tender and no matter how careful we are, it gets a little jostled when we move him. Every time Will wants to move, he lifts up his legs in his normal pattern, but that pulls on his abdominal muscles, which hurts! So he catches himself with a painful start, and we know that he's about to get Old Man Face and cry. We feel so bad for him, but there isn't much we can do.

Now he has gotten morphine to manage the pain, and was finally able to take a nap. He just sneezed and that doesn't feel good, neither do the hiccups that he's gotten a couple of times today. Laughing and yawning also seems to be tough on his little body, so we're just doing our best to make him comfortable and get through the night.

Nate has gone home to stay with Luke and I am at the hospital. Will and I are about to bunk up and watch a movie... I wonder if his souped up hospital crib will hold my weight. I think he needs some mommy cuddling time.

Monday, June 8, 2009

Baptism by Steri-soap

If you've ever visited us in the hospital, or anyone in the NICU, you know what Steri-soap is... its that sterile smelling hand wash that they make you use at every sink at the hospital. You know... the one that kills every bacteria known to man and makes your hands feel like you've spent all day crawling across the Sahara in August.

Anyway, tonight in our pre-op preparations for Will, we had to bathe him in it. And then again tomorrow, before we leave for the hospital at 5:45a, he's got to have another super refreshing, super drying, super sterile smelling bath. Ouch! The poor kid's got sensitive skin... this isn't helping!

We got the call late this afternoon that we're scheduled for the OR first thing in the morning for Will's g-tube surgery. Hopefully the whole thing happens roughly on time, because we aren't allowed to feed him anything by mouth after midnight tonight.

This whole "planning for surgery" thing is really new for Nate and me. Aside from one time in the NICU, every surgery the boys have had has been in an emergency situation... shunts malfunctioning... neurosurgeons on call in the middle of the night. We've known for weeks that June 9 is the day. Its weird. I have actually had time this evening to walk around the house and calmly pack an overnight bag, rather than rushing around the house in a sleepy, scared, middle of the night, awake with a vomiting child stupor, actually able to think about what I'd like to have over the next three days, rather than what we can't live without for the next 24 hours! We even had the time and forethought to move Luke's car seat and stroller to Oma's car, to allow her some mobility over the next couple of days while we're tied up at UNC with Will.

Its all amazingly different, though not without anxiety, of course. We aren't looking forward to the surgery tomorrow, though we are looking forward to the end result of fat Will :)

If you'd like a better understanding of g-tubes and what our experience is going to be like, check out this super-cute, yet informative children's story that Nate found online today (its a .pdf file, so only open it if you've got Adobe Acrobat Reader).

So keep us in your thoughts... hopefully by noon tomorrow, Will will be on the road to chubby cheeks and a belly to match his brother's!

Monday, June 1, 2009

Pick up the phone, North Carolina residents!

We need your help! With the budget crisis in the state looming darkly over our heads, the state legislature is about to vote THIS WEEK on a new budget which would severely cut funding for such essential programs as Early Intervention and Medicaid. Both of these programs have helped Luke and Will tremendously and by cutting funding to these programs and education, the amount of assistance and therapy that Will (and our family!) could get into the future would be severely limited.

Even if you've never been the calling or advocate type, please consider calling on behalf of all children in the state for whom these services are essential. If you need a face to inspire your call, please see the photo below of Will enjoying his dip in our kiddie pool this past weekend. Will is seen weekly by no fewer than three therapists who are in part funded by Early Intervention money from the State of North Carolina. These funding cuts could limit or completely eliminate the funding for the services that he currently receives.

Please see the note I have included below from our local ARC chapter. There is information listed about legislative contacts in Wake County and a couple of topics to bring up when you talk with someone at the Capitol. If you live in NC but in another county, there is website that you can access the name and contact information for your local legislator.

** From the desk of Steve Strom, Director of the ARC of Wake County **

HB 672/673

This week the House of Representatives has come to grips with what a $4.5 billion dollar deficit will look like and has begun an attempt at a spending plan without increased revenues. The results will be disastrous for all North Carolinians and even worse for NC citizens with disabilities and their families.

In the Department of Health and Human Services the Committee is expected to reduce spending by $1.35 billion. This cut must come from the $4.9 billion state funds in the DHHS budget. A 20% cut is terrible in its own right, but the DHHS only has $1.713 billion that is not in the Medicaid program matching federal funds. Of the remaining $1.713 billion, over $700 million is in the Division of MHDDSAS. Any dollar cut in Medicaid adds an additional $2 to the impact of the cut.

If the legislature doesn't take action, we can expect significant reductions in CAP/DD/personal care services/state funded developmental disabilities services/vocational rehabilitation services and much more.

In education, class sizes will increase dramatically, teacher assistant's positions and other support services will be eliminated, and the school year will be shortened by 5-10 days. Community colleges who train workers for our field will be slashed as well as University programs that produce teachers and professionals who support people with disabilities will be severely cut.

The week of June 1st is Critical to Stop Massive Budget Cuts. The House Health and Human Resources Committee have proposed cuts that will completely destroy North Carolina's system for supporting people with Developmental Disabilities. These cuts will set NC back decades in our support of people, will eliminate services to thousands, cause massive cuts to thousands more and eliminate tens of thousands of jobs. It is not an overstatement to say that people with developmental disabilities will lose their lives.

We must act now or these cuts will happen.

A few of the worst are

- Reducing the budget for MHDDSA state service dollars by over 150 million dollars

- Eliminating continuation increases in Medicaid of over 500,000 million dollars. This cut means serious reductions in CAP because any plan increases for individuals implemented during the last fiscal year will be eliminated!

- Freezes CAP Slots for a 15 million dollar savings-this means if someone moves, dies the slot is not available for anyone new

- Cuts all Medicaid service provider rates by 4% causing salary reductions and layoffs

- Cuts Medicaid personal care services by over 50 million dollars reducing this service by over half-this is the only direct service other than case management that is a Medicaid entitlement for people with developmental disabilities.

- Cuts Case Management services by over 50 million dollars by "consolidation"

The budget proposal also eliminates the Medicaid program Community Support which is the one Medicaid community program designed to support people with Mental Illness in community settings. The proposal cuts over 1.5 billion in state funds from DHHS by the end of the 2011 fiscal year. Because so much of the cut is in Medicaid the cut to NC's economy is over 4 billion dollars! We estimate that the cuts will reduce spending on the MHDDSA system at least one third and could reach more.

Here's what we must do!

Of course these cuts along with cuts in education, justice and other state service areas will cause outrage amongst organizations but we can not rely upon others to voice concern. Our action this week and through the summer is the difference in the future of our state!

In Wake County, contact your Wake County representative. Make a special call to Wake County representative and Minority Leader Skip Stam at 919-733-2962. These legislators must receive thousands of calls telling them that this is unacceptable! Everyone should call these leaders. And encourage friends, church members, family members, self advocates to call. E-mails will not work this time. WE MUST CALL.

Members will be back in their offices Monday afternoon. Start calling Monday at noon! Leave a message if you can't speak to your representative and call back if the line is busy.

For your member, call the Legislative Switchboard 919-733-4111 or go to the Legislative web site and look under the House member list for the phone number.

Here's the simple message you can tell your House member:

The proposed cuts in HHS and education will destroy our state, risking the lives of people with disabilities, our children's future. Cost thousands of jobs and drive our state into a depression! Raise taxes in order to avoid this disaster! We hold the House accountable!

If we fail to respond, people with disabilities and their families will see significant and life changing reductions in the supports and services offered by North Carolina