Wednesday, December 21, 2011

Christmas Photo Outtakes

It is always quite the adventure to get a family Christmas photo where everyone in the picture is looking their best.  This year, I didn't even attempt to get Paul and I in on the action because I knew it would be hard enough just to get both kids looking at the camera and smiling.   Well, I was right.  We tried on numerous occasions to get the perfect shot and on numerous occasions we got anything but.  However, looking through all of them was quite funny.  We got...
profile shots,
one kid is smiling perfect while the other looks like they are picking their nose shots,
sweet big-sister moment shots,
unwanted (but cute anyway) kissing shots,
admiring my big sister shots,
beeping the nose shots,

"I'm so done" shots,
"Giddy-Up" shots,
"I'm trying to smile big" shots,
"This is so not fun anymore" shots,
"You want to see my belly?" shots,
Popeye shots,

Daddy caught tickling shots,

and "Dad, are you serious?" shots.

 But through it all, we also got some keepers. 

Good thing for digital cameras!!

Friday, December 16, 2011

Keeping the Faith

Our primary insurance covers most of Parker’s health care costs.  However, there are some key components that are left out.  In particular, the nursing services we get are not covered at all.  This is why I was so ecstatic when we found out Parker was eligible for the Katie Beckett program when he got his trach.  This automatically made him eligible to receive Medicaid as a secondary insurance which then allowed us to get nursing services.  Medicaid also picks up when we meet our cap under our primary insurance for therapy services and medical equipment.  Medicaid also covers Parker’s expensive formula. 

Medicaid has been covering these items…until now.  Nebraska, as well as the rest of the country, needs to make some much needed cuts and a lot of these are coming out of programs like Medicare and Medicaid.  Nebraska is planning to cut 21 million dollars from the Medicaid program and in the proposed cuts it looks like nursing is going to be cut drastically.  We don’t yet know what that means for kids like Parker who require 24/7 care.  There are many kids out there that need a much higher level of nursing care than Parker and if they make straight cuts across the board I don’t know what those families will do.  I imagine a lot of people with high medial needs will have to go to more institutionalized settings which I find very sad.  We, of course, will do whatever needs to be done to keep Parker at home.  However, this could mean some very sleep deprived, grouchy parents that desperately need a break.  

I have some calls out to department heads at Health and Human Services to see what impact the proposed cuts will have on kids like Parker but I haven’t heard back from anyone yet.  I’m hoping they will take individual situations into account when making decisions.  Kids with medical issues like Parker may be the minority when they are looking at the big picture but the impact this could have on families like ours is worth considering and in my opinion quite scary. 

In the midst of everything I DO NOT know, I DO know that we have been well taken care of and provided for and God will continue to take care of us.  Every big concern and worry that has plagued me so far in this journey with Parker has always worked out.  God has been enough and will continue to be.  No matter what the outcome, I need to remember that and keep the faith.  

We would appreciate prayers that the government officials will understand the true impact of their decisions in cases like these.  I understand cuts do need to be made and we are more than willing to make cuts and sacrifices just like everyone else but I hope they won’t completely cut care so much that patients and their families will truly suffer.  I would also greatly appreciate prayers that Paul and I will try to remain calm in the midst of all this, that we will remember we are not in control, and to do a better job of taking our worries/frustrations/stress to God.  I will admit, God has undoubtedly taken care of us but it’s not because we are doing a great job of asking for His help.  We are fortunate to have such a loving and merciful God that will protect us and provide for us whether we deserve it or not.

Also, we’d like prayer that Parker will continue to make progress and strides so eventually he will no longer need 24/7 care and this will no longer be an issue.  There are so many other families out there in much more difficult situations than ours.  Their children are much sicker and require much more care.  I pray that those children and families will not be overlooked and that families can remain together in their home as much as possible.  

Thank you all for going along on this journey with us.  We appreciate all of your love and support!

Monday, November 21, 2011

Early Christmas Gift

Tonight, I had one of the happiest moments since I've been a mother.  


He has a PMV (Passy-Muir Valve) that fits over his trach.  This is what enables people who have trachs to speak out loud.  It's a one-way valve that allows them to breath in through the trach but forces the air out through the vocal cords.  Parker has been unable to tolerate an unmodified PMV until tonight. 

We didn't capture much on video but I hope to get more on tape soon!!  Most of what you hear is Parker but Alexa does laugh as well in the middle and at the end of this segment.

This is the best early Christmas gift I have ever received!!!

Saturday, November 12, 2011

What a Difference a Year Makes

I was looking at my planner the other day trying to find out when an old appointment was and I made my way back to November of last year.  I realized how much has changed for our family and especially for Parker since then.  Many of you ask for more specific updates on how Parker is doing and I often leave a lot out.  Hopefully, this post will bring you up to speed on what our lives looked like THEN (mid-November 2010) and NOW (mid-November 2011).

THEN:  Alexa had just turned two and Parker was 3 months old.
NOW: Alexa just turned three and Parker is now 15 months old.
THEN: Parker had been home from the NICU for almost 6 weeks.  We were still scared to death but adjusting.  Parker's breathing was still labored and he sounded very loud.  He couldn't get adequate air unless he was in very specific positions and he had to be on continuous oxygen. He needed to be very closely monitored.  He had a heart/apnea monitor hooked up to him 24/7.  It was the end of November 2010 when Parker's airway finally collapsed and we ended up in the ER and then went by ambulance to Children's Hospital in Omaha.
NOW: Parker has a trach.  We realized after all other options were considered that a trach was the only way to go.  It was the best decision we ever made because now Parker CAN BREATHE, he can be in any position he wants and he doesn't need oxygen unless he's sick!!  We no longer have the heart/apnea monitor but still use a pulse oximeter when he's sleeping.  It is definitely a lot of work caring for a child with a trach.  We have to do trach cares where we clean around his trach stoma at least twice a day, we suction him a lot, we do trach changes weekly, we have a heck of a lot of medical equipment and have to take it with us wherever we go, and he's more susceptible to infection since he has a direct passage way to his lungs.  But even considering all of that, it is SO WORTH IT not to fear your baby is going to die because they can't breath!!!

THEN: We were exhausted as we didn't get much sleep.  Paul and I were the only ones that knew how to do all of Parker's care and we had to be on 24/7.
NOW: The trach qualified Parker for in-home nursing care.  Now we have a nurse every night of the week from 11p-7a so we can sleep.  I won't lie, it was incredibly hard having a complete stranger in my house caring for my child but we have adjusted to it and don't know what we would do without that extra support.

THEN: It took us about 40 minutes to feed Parker expressed breast milk through a special bottle every 3 hours during the day and night. It felt like all I ever did was pump, feed, and burp him.  The Doctor's told us he would likely never be able to get his daily caloric requirements by mouth but we worked very hard at it and proved them wrong.  It wasn't easy though.  We had to hold him in just the right position which made it easier for him to coordinate the suck/swallow/breath but the position was very uncomfortable for us.  We had to watch very closely for signs of aspiration and not push him too hard.  He wasn't gaining weight very well because he had to put in so much effort to eat and was burning practically as many calories as he took in.  But he was doing it and we were so proud of him.
NOW: When Parker was hospitalized in late November 2010, they did a swallow study on him and found that he was aspirating very badly.  We were told we should no longer give him oral feeds.  He had a g-button placed and gets all of his nutrition by tube feeding.  We give him 4 tube feedings that run about 45 minutes each during the day and he's on a continuous drip feeding at night.  Parker is also on a specialized, prescription-only formula since he was found to be intolerant of breast milk and regular formulas.  Once on the tube feeding and the special formula, Parker's weight took off like crazy and he's now above average!

THEN:  Parker hadn't had any surgeries or been under anesthesia
NOW:  Parker has been under anesthesia 5 times (all before he turned ONE) and has had around 20 surgical procedures done while under.  At least 5 of these would be considered major surgical procedures and the rest minor.  He's also had numerous MRI, CT's, ultrasounds, x-rays, swallow studies, and various other imaging studies done.

THEN: We had 5 Doctor's involved in Parker's care
NOW:  We have 14 Doctor's managing Parker's care as well as four therapists/teachers, and several other health care professionals.

THEN:  Parker had around a dozen medical diagnoses.
NOW:  Parker has well over 100 diagnosed medical issues.

THEN:  Doctor's intimidated me.  I thought it was their job to look at all the information and decide what the best course of treatment was for my child.   I thought whatever decision they made was best.
NOW:  I have learned to advocate for my child and family.  I have learned to step out of my box and let my opinion be heard.  I have learned that Doctor's don't always know what's best and some will even admit that.  I have learned that I know my child better than anyone and it's my job to figure out what's best for him with the information that I have.  I have learned to seek out a second opinion if that makes me more comfortable with the decisions I have to make.  I have learned that I simply want the best for my child and there is no stopping this Mama Bear from doing whatever she can for her family.

THEN: Parker took 4 doses of medicine per day
NOW:  Parker takes anywhere from 5-15 doses of medicine per day.  Right now we're at 5 - YEA!

THEN: Parker had very limited mobility.  He held his hands in a fist and had to wear splints.  His hearing and vision were quite delayed.  He slept most of the day.
NOW:  Parker does very well with his hearing aids and though it's still limited, his vision has improved drastically.  He can now hold a sitting position with support, stand with limited support, roll over each way, grab at toys, pull his sister's hair on purpose, and use both his hands together.  Parker is awake most of the day and loves to play and be cuddled.  He also has the most wonderful smile in the whole world!!

THEN:  We never took Parker into public places in fear of him catching something
NOW: We take Parker into outdoor public places when it's nice out.  We still try to stay away from indoor public places because Parker's immunity levels are on the low side and he catches things easily.

THEN: We spent a lot of time worrying what Parker's future held, we were stressed all the time, we felt guilty that we couldn't give Alexa the childhood we had expected to, we were grouchy because we never got enough sleep, I was concerned with what all this meant for my marriage because statistics show situations like ours can break up families.
NOW:  Parker amazes us everyday, we appreciate life and the current moments we have more, we don't get too worked up over the little things anymore, we feel blessed to have two wonderful children in our lives, we love that Alexa is such a wonderful big sister and we believe she will grow up to be a better person because of her experiences, I feel my marriage is even better than it was in the past, we have felt the power of prayer and know miracles do happen.

Tuesday, November 8, 2011

Guess who is THREE!

On Saturday, Alexa turned THREE! 

It's a bit unreal and I cannot believe it's been three years since she was born!!  We celebrated by having a small party on her birthday where we had her favorites, pizza and cake.

I let Alexa pick out the theme for her party this year.  It was a tight race between Tinkerbell and Curious George but in the end Tinkerbell won. 

Then yesterday, Paul and I took Alexa to CoCo Keys which is an indoor water park in Omaha.  We'd never been but judging by how much Alexa loves swimming lessons we thought it would be a hit. was!  She loved the place and would've stayed all night long.

Happy birthday my beautiful girl!! 

Monday, October 31, 2011

Happy Halloween!

This Halloween we've been busy.  To start things off, a couple of weeks ago we made a second attempt at going to a pumpkin patch.  Paul's grandma was visiting from Kansas so we thought we'd like to take her to a new pumpkin patch that wasn't far from our home.  This time was much more successful than our last visit. 

We took advantage of some photo opportunities
Alexa loved the "corn box"
We got to pick our own pumpkin from the patch
This looks like they're practicing their beauty queen waves which is pretty funny
We went on a hay rack ride
Then we attended Boo at the Zoo.  This was the first time any of us had ever attended even though Paul and I have lived in Lincoln for a long time.  The weather was nice (especially for this time of year in Nebraska) so we decided to take Parker as well.  They had a great time and Alexa learned very quickly to say "Trick or Treat" so she could get candy. 

Then it was time to celebrate Grandpa Tom's 60th birthday which happens to fall on Halloween. 
We had Witch Cake,
Monster burgers,
Bug Bites,
and Marshmallow Mummies.

Then it was time to let our creativity take over and decorate pumpkins. 

And finally, it was time to dress up and get ready for trick or treating.

All in all, this was a great Halloween!!!

Sunday, October 30, 2011

San Diego with the Girls

A couple of weeks ago, two of my good friends (Jill and Suzanne) and I went on vacation to San Diego.  It has been a difficult year for all of us for various reasons and we just needed a little break, a chance to rejuvenate, and have a stress free time.  I've known these girls since high school and we are able to completely be ourselves around each other, not be afraid to admit our flaws, and there was absolutely no drama the entire time.  This trip was exactly what I needed.

I do have to admit, I was quite nervous about going.  I knew Alexa would be just fine without me because she's a Daddy's girl.  But, I had not been away from Parker before and even though Paul is great with him and a very good Dad he doesn't get to spend as much time with him and I was afraid he'd miss the signs that Parker was getting sick or something wasn't going quite right.  I had taken care of all the appointments, made all the Doctor calls ahead of time, and put together lists upon lists of information that could come in handy (all Parker's Doctor's and contact people, his daily schedule, medication times, and his long list of medical issues).  Paul assured me that he would be just fine and deep down I knew he was right.  I needed to stop being so controlling and just let my worries go and eventually I did.  Once I boarded that plane, I surprisingly did very well (and so did Paul).

On our first day, we went to Sea World and picked a perfect day for it.  The weather was a bit cool but still wonderful and there was not much of a crowd at all.  The only mistake we made was going on the water rides at the beginning of the day.  Suzanne and I didn't get too wet but Jill was soaked.  Her poor little toes turned purple and she was dripping wet for what seemed like all day.

I should also mention that we talked Suzanne on going on the Journey to Atlantis ride.  The girl hates rollercoasters (believe me I know because in college we all went on a road trip together to Cedar Point in Ohio) but we somehow or another talked her into going on it.  I've never heard anyone scream that loud or that long in my entire life.  It was pretty hilarious (for Jill and I at least).   We, of course, also got to see Shamu, lots of marine animals, and had a great time.

The next day, we went on a Segway tour of downtown and the San Diego Bay.  We got a great deal (thanks Groupon) and it was a lot of fun.  I was probably more hesitant and unsure of myself on the fancy machines than anyone else (including two older ladies that were in our group) but still had a great time.  Our instructor was very good at what she did and we got to see a lot of the area and learn things that we wouldn't have otherwise.

The following day, we went to Coronado Island.  I have been to San Diego before but I've never been to Coronado.  It was beautiful!  The little island almost looked like a movie set with it's beautifully kept GIGANTIC beach houses, the cleanliness, and the perfect looking people.  We spent the afternoon at the beach and it was probably the most relaxing day I've had in years.  We spent the time laying in the sun and getting covered with the finest white sand I've ever seen, gathering sea shells while trying not to let the waves get us too wet, being silly, and unsuccessfully thwarting off sea gulls.  One I may add, managed to knock over my soda into the sand and steal a sea shell.

The rest of our trip was spent shopping, eating, sight seeing, eating, arguing with Gloria (the GPS) about the right way to get from here to there,eating, admiring the Sunset Cliffs, eating, trying to change Jill's unsafe driving habits, eating, getting a $37 parking fine because we were 1 minute late getting back to the car, eating, and being lazy.  Oh, and did I mention we spent a lot of time eating?  I would love to tell you I didn't gain 5 pounds in 4 days but that would be a lie. 

It was a marvelous trip and we decided we would be going somewhere annually.  Our husbands haven't agreed with us yet...but they will.