The Paauwe Report

Some exciting news!

Hi again.

I just wanted to share a couple bits of exciting news we recently received.  First, Avery's application for Medicaid Disability was FINALLY approved by the Medical Review Team at the Medicaid Office.  This will finally allow the Medicaid Waiver services she was long ago approved for to begin.  The Waiver services include some allowance for RN respite care in our home and an allowance for home and vehicle modifications (for accessibility) should we need them in the future.  They may also cover some equipment that regular insurance or Medicaid Disability would exclude as not medically necessary.  It may be difficult to piece this all together as I have told it, but the Medicaid disability and Medicaid Waiver are two different things.  It is necessary for Medicaid disability to be approved as well, however, before any Medicaid waiver services can begin.  Confusing and complicated are the right words for this, but we are so thankful to have this assistance now. 

The other cool thing we wanted to share:  We received a letter in the mail yesterday that Caiden was selected to attend the new (opening fall 2008) IPS Magnet Elementary School for the Gifted and Talented.  We knew this new Magnet option was happening next year as part of IPS's continued improvement plans (which calls for a lot of changes to many of the district's schools...changes in curriculum, boundaries, expectations of students. etc), but last we knew, there had been no details released about how applications would be taken and what exactly would determine a student's acceptance into the program.  We had decided to just wait and see, and had kind of forgotten about it....then this letter arrived.  Seems Caiden was selected based upon teacher recommendations, a thinking skills test and his reading and math abilities....all without us even knowing this process was occurring.  Nonetheless, we are excited about this opportunity should we decide it is right for him to take.  From the provided program details, it sure seems like a really fantastic opportunity.  We are going to attend the upcoming open house to find out more about the program and teaching staff, etc.  If we like what we hear and see, then I think we will accept.  No matter what is decided, we are just really proud of his accomplishments and his effort this year in school and of the person he is becoming in other ways.  He has really been taking more charge with Avery here lately as well.  I think he sees the "differences" in her now too.  It is so great to see him become so thrilled by her response to him.  I'm not sure we could love our two kiddos any more or be more proud of them!  God really has blessed us with the gift of their lives.

Hope you are all doing well.  Spring is having a tough time getting through here.  Enough rain and clouds already!  Oh well, I guess it is needed to have all those pretty flowers and "new" life that Spring brings along with it.  So, here is to flowers and new life!  Bring them on!  We're in the mood to celebrate.

Thanks to all those who continue to support us in every way.  We feel humbled to be "chosen" by you each and every time.  This seems the right time and place to share something with you that I recently wrote to the hemimegalencephaly group I belong to on Yahoo.  It was in response to another Mom who posted about having a bit of a rough time emotionally as of late.  I share it here with you all because it is important to me that everyone that cares about Avery and our family knows just how I/we feel about having her in our lives, how we each deal with it, and how we "think" about the future.  Here it is:

Hi (name left out for privacy).

I am sorry that you are having such a hard time.  I do agree with () though...that everything really does happen for a reason.  God is with us at all times.  We only have to open our hearts, ask for guidance and listen when things seem the hardest.  And we have to recognize the "signs" when we see them.  I have always found that, when I listen to my internal voice, I never make a wrong decision.  When I ignore it though, I almost always make a BIG mistake.  The hand we have been dealt with our kiddos in many ways is not fair.  But we know that life is not fair and that God didn't promise a life without trials and pain.  Lord knows, I never would have believed that I would be handing Avery over for her third surgery in less than a year and a half or that I would be dealing with a diagnosis of suspected MS.  And Lord knows, I said many times that I was not strong enough for either (or for many other a thing)...yet, somehow, it turns out I was..I am.  God has given me the strength.

When I am feeling the most down and sorry for ourselves and Avery, because of all the ways she may be different and all the ways we scared for her future, there are two things that I hold on to that are the absolute truest things I know.  The first is this: no matter what Avery can or can not do, she will NEVER be lacking in love.  See, just as () said of her (), our Avery has changed absolutely everyone who has met and gotten to know her/us.  She simply draws people in...they can't resist her.  I happen to think that it is God's presence within her that people are just drawn to.  This comforts me so much, because there are a lot of "typical" kids out there that, sadly, will never know that much love.  I know that () has that kind of presence too.  Hold on to that when your heart is heavy.  The second is this: I am thankful to God every day for giving Avery to us because I know that we will do everything we can to help her reach her potential.  To picture God having given her to someone who couldn't or wouldn't take care of her the way we do...well, that breaks my heart more than anything else.  So, as hard as some days are (and there are some really hard days), I still feel blessed to have her in my life.  I know that there are many struggles and tears ahead, but it is a gift to live in the present and to truly appreciate things in a way I never did before her.  And, I know that () is all those thing for you too and that you are the best mother to him!  I hope you can find some way to deal with your issues at home and make peace with any decisions you make.

 

As Moms, I find we generally carry more of the emotional load when it comes to our kids and I think having a special needs child really brings out our inner tiger in a way that some Dad's don't understand or relate to.  I think it all boils down to our differences as man and woman (dad and mom).  I know my husband loves our children to death, but he doesn't obsess over every little thing I do when it comes to Avery's progress.  Aside from the initial period following her diagnosis, he hasn't spent nearly as many countless hours searching for answers on the Internet - stories of hope, alternative therapies, etc.  He doesn't post here or read these posts (unless I ask him to look at "this one" or "that one").  And in talking to other friends and co-workers about Avery, he "tells' it different than I.  He just doesn't think like I do...he is not a Mom.  And in many ways, that is probably a good thing for the both of us...we can balance each other out a bit.  To be sure, it can be very frustrating at times, but I know deep down that he loves her as much as I...it is just expressed differently and he deals with his feelings/fears in a different way too.  Marriage can certainly be hard at times, and it is true that children with special needs can really put it to the test.  God only knows how we will all weather those tests in the long run.  For now, you have to make the best decisions for you and your family and forge ahead from there.  Know that you can always come here to share and vent, without judgment from me.  We all can...what a gift!  That's one of the reasons that I can't wait to meet everyone who can attend the meet-up in June.  I think it will be so empowering on many levels.  And, to be among each other for a couple days will allow us all to feel a little more normal for a while!  Although, I have to admit, I happen to think we are better than normal anyway.  I think we are all extraordinary. ...everyday, just as we are, just as our kids are!  We get up every morning and rise to the "extra" challenges of our day...and we make it through, each and every one.  That's something to celebrate...even if we don't always do it with a smile on.  Our kids are lucky to have us, as we are them.  I believe that...I really do, even on may hardest days.

Much love to all of you reading this.  I could never put into words how much it means to have you all and this place.  This group is the single most important life-line I have in the HME world.  There is always hope, understanding, validation and love here.  How awesome is that!?!?

Holly

(Mom to Avery, left HME and Caiden, well)

www.thepaauwereport.typepad. com

www.averypaauwe.com

Peace and love be with you all tonight and in the many days to come!

Holly

Allergy Results

Hi ya! Just a quick update to say that we all saw the allergist the other day and he agreed Avery should be tested for additional food allergies since she had a reaction to peanut butter.  She had it done in the office right then and there.  To our delight, she tolerated it much better than we ever imagined she would.  Even Caiden said, "she did much better than I did when they tested me."  The doctor only tested her for the most allergenic foods using the skin test (little drops of allergen on the back with a little break in the skin at each location to see if there is a reaction).  Luckily, she is not allergic to any of the tree nuts!  The only other thing she showed and allergy to (besides the peanut which was confirmed during the testing) was cow's milk.  It was only a small reaction, but a reaction nonetheless.  So, we are going to see what happens if we take the milk proteins away for 3 weeks and then introduce them back.  If nothing changes, we will know that she is OK with the milk protein.  Otherwise, we will need to see about changing formulas permanantly.  Sure makes me wonder?  I wonder if Jon, Caiden or I have any food allergies we don't know of.

We all continue to keep chugging along otherwise.  So ready for Spring in our household! 

Love,  Holly

Coming Along Each Day

Hi.  Hope everyone had a Happy Easter (or happy Sunday if you don't happen to celebrate the holiday).

Avery is continuing to do really well.  She has jumped back into her regular therapy schedule this week and has tolerated it all so well.  We haven't seen any of the one type of seizure that we first saw in the hospital a few days post-op for over a week now...so we are cautiously optimistic about that.  We do however see an episode of "big eyes" and sort of staring off to her left with hands partially raised here and there.  She is however fairly responsive through them, so if they are "yuckies" of some sort, at least she is still "with" us and capable of processing her environment to a significant degree.  She does seem to be showing gains in some areas since surgery.  Nothing absolutely jaw dropping, but significant nonetheless.  Her head control has improved and continues to each day it seems.  She appears to be turning towards voices and sound more and more.  Her processing time seems to have decreased (in other words, when you make a silly noise or do something she likes, her smile and response comes faster than it used to).  She is kicking her legs some again (which she used to do a while back but had not been doing all that much a few months prior to surgery).  She is making vocalizations still (maybe more than before surgery) but definitely with some new sounds.  She has a few more tickle spots too!  Overall, people keep telling us that she just seems more present in the world (has more awareness), which is awesome to hear.  That certainly increases her ability to learn more and more.  She also ate by mouth better than she ever has for her First Steps OT, Elaine, on Tuesday this week.  That is very exciting!  We are so pleased with her progress so far and look forward to the days to come.  She is off the night-time dose of valium and we are getting ready to begin weaning the Neurontin we put her on after sugery to try to keep the arching and screaming episodes at bay.  Either it has done the trick or she just wasn't going to experience the same slow recovery as last time anyway.  Who really knows?  Let's all just say a prayer that as we take her off that drug that she doesn't begin to have those episodes.  Hopefully in 6-8 weeks then we will get the go ahead to begin weaning the big, bad phenobarbitol.  The speech therapist at Methodist said that it is a big one for speech...so it will be interesting to see what happens verbally with her as she comes off of it.

Jon and I are back in the full swing of work and doing well.  Our house is an absolute mess, but I guess that is just par for the course.  We have been back home in Indy for a little over 3 weeks now, but we have been running here and there and getting back to the business of living.  We had just gotten our bags unpacked from Baltimore a few days before packing to go to Tell City for the Easter Holiday.  Now we need to unpack again.  We really did enjoy getting to see everyone and to share Avery and her progress with so many family and friends though.  Hopefully, we will get a chance to catch up on a few household things this weekend. 

Last Friday, Jon and I got to go to a play - Thoroughly Modern Millie.  It was great fun and we were thrilled with our seats.  We had won 2 "free" tickets at Caiden's school's silent auction for a very minimal sum compared to their regular cost.  When we called to reserve tickets for Friday's show, we had no idea how good they'd be.  Turns out they were even better than you could buy online a few days before.  We were 4th row center!  It really was a lot of fun and I can't wait to do it again.  Those of you that really know me know that I LOVE going to plays.  I just don't get to do it very often at all - it's that thing with time and money and all.  These just happened to be a great deal and good timing (and a little help from great friends made it possible too). 

Tonight we had Caiden's schools' musical program at Broad Ripple High School.  The theme this year was "Around the World in...80 Minutes or So..."  Each group did songs from a different continent, showcasing a few songs from representative countries found there.  Caiden's group did songs from Africa and they did a great job.  In fact, all the groups did a great job.  We are so thankful for such an enriching educational experience at IPS School #91, for the dedicated staff and a supportive and encouraging principle.  The kids really have all the opportunity to achieve and thrive in School #91's environment. 

Well, I guess that pretty much sums up what has been up with our clan since the last post.  I hope you are all doing well and getting at least a little taste of Spring in your part of the world.  I'm still getting over a cold here, but taking solice in the fact that the flowers are starting to pop up from the ground, indicating that Sping is, in fact, arriving.      

Peace and love,

Holly

PS: I added a few pics of Avery from late last year to the "Avery 2007" photo album.    

Home at Last

Our awesome homecoming surprise from Caiden and Dad P.  How sweet it this? 

Hi all.  Just a quick note to say that we made it back to Indianapolis yesterday evening at about 6 PM.  We were so happy to see our Caiden again!  We hauled our stuff in and visited with each other for the evening.  Avery slept better than she has in days.  She must have known that she was finally home.  That, of course, also meant that Jon and I slept better than we had in days too. 

I headed into the ASK office to get some work in today.  Jon had already planned to have Family Medical Leave through the end of this week, so I knew it would be a great opportunity to get some good hours in at the office and get caught up.  Jon, Dad P and Avery spent the day together and even hung our screen door on the back of the house (we had been without one for over a year).  It will be nice to be able to open our back door up again this spring and let some fresh air in the house without all the bugs as well. 
Dad P heads back to FLorida tomorrow.  I know that Caiden is going to miss him so much after having spent 2.5 weeks together.  We can't think Dad enough for being here with him all this time, and for the work he did around the house!  We are so grateful that he was able to do it.

Avery is continuing to do well.  She has still been having a "yucky" here or there, but Dr. Kossoff agreed that there is still the possiblity that they will stop as we are not that far out from surgery and given that he has seen it happen before.  Just keep praying...we are.  Other than that, not a lot to report today.  We have a lot to do to get everything back in place at home and into the swing of our routine again.

On last thing, please say a prayer for the family of a dear friend of ours, Jennifer Jones (Noah's mommy), as her father (Noah's grandpa) lost his battle with pancratic cancer this past weekend, at only 49 years old.  By all accounts, he was a fantastic, God-loving man who was a friend to all and role model to many.  Feel free to visit Noah's Caring Bridge Link from this blog page to read the beautiful words Jennifer shared about her father.  Her unwavering faith and spirit through all she has endured this last year is a inspiration to me and so many others.   

Thanks for checking on us. 

Going Home

Hi to all.  We have just finished cleaning our room at the Children's House and are getting ready to start heading towards Indy.  It will be so great to be home again!  We are missing our boy badly. 

Avery had the rest of her staples removed today and saw both Dr. Kossoff and Dr. Jallo.  Everyone is really happy with how good she looks and how much better she recovered this time.  We are all a little bummed that she is having some seizures still (about 1-2 per day that we know of), but we know that we are still not that far out from surgery and that they could still go away.  We are praying for that.  Regardless, Dr. Kossoff was in agreement that it is time to get her off some of the meds.  The first medicine, besides the one dose of valium she gets at night (which we will wean her off of over the next week) that he wants to look at removing is phenobarbitol....YEAH!  That was exciting for us to hear.  I have always wondered what she might be like off that med.  So, maybe in a couple months, we'll get to see.  We have to come back in 6 weeks for follow up with Dr. Jallo and we'll see Dr. Kossoff while we are here at that time too.  Then, hopefully, we won't need to be back for follow-up for about 6 months.  We sure are happy to have this surgery behind us and to be heading back home. 

We can't thank you all enough for all you have provided for us over these past weeks and months.  All the support - spiritual, emotional and financial - has really seen us through these tough days.  Thanks for all you have done for us, yet again, in this journey.  We appreciate it more than you will ever know. 

See you back in Indy, or around.

Much love,

Holly

Avery returns

Sorry to have left you with no news for a couple days.  I've been working and we have done a bunch of running.  As you might expect, after so many days being couped up in the hospital, we have been antsy and not wanting to sit around much. 

Avery continues to do well.  She has been happy, smiling, and giggly most of the time.  The first night back at the house, she slept great.  The next night, not so much.  She had had a little rest on Daddy right before we came up to go to bed and she decided that was all she needed...now she just wanted some attention.  I obliged as much as possible until she finally gave it up at about 2:00 AM.  Last night was better, though she still woke up about 4:00 AM and didn't settle back to sleep until after her 6:00 AM meds.  Then she slept until 10:30 AM!  She's up and happy now.  Her scar looks better each day too.

It pains me to say this, but she has had a couple of seizures over the past few days.  Jon first noted one when she and he went for that walk down at the Harbor.  It was like the one that we had seen days before at the hospital.  Since then, we have seen a few different episodes that might or might not be seizure activity, as well as one or two we are pretty certain about.  We are just praying so hard that these episodes will disappear as she continues to heal.  Please join us in that prayer.  We will talk to Dr. Kossoff about this Monday and find out what our next steps with meds are.  We want to get her off the Dilantin and then the Phenobarb.  So, we are going to suggest weaning the Dilantin, and then upping her Keppra dose (which is barely therapeutic for her size) to give her protection as we wean the phenobarb.  Hopefully he'll be in agreement...we'll see.  If she is meant to always have some seizures no matter what, then we want her of the meds that keep her brain too clouded to developmentally progress.  We'll find other ways to deal with the seizures.  Of course, as I said, we are still praying hard that we won't have to.  Oh, how we love her so!!

We had the opportuity to go to the Science Museum down at the Inner Harbor for free last night to see an exhibit called BODYWORLDS 2.  An exhibit of real human bodies that have been plastinized for preservation and then organized and displayed to show anatomy, disease, and effects of lifestyle choices on the body.  The exhibit was open exclusively for families staying at the Children's House.  It was really very interesting.  Beautiful, yet a little bit creepy too.  Take a look at it here http://www.mdsci.org/bodyworlds/index.html and click on the "about BODYWORLDS" link to see a video of some of the collection and reactions from guests.  Then, if you wantm read more about the man behind it, the complete exhibitions and the plastination process here http://www.bodyworlds.com/en.html.  It was definitely something I won't soon forget.

We are going to venture out again today, since it is sunny and relatively warm out.  It's great to feel like we are close to "normal" again so soon after surgery, given that it was months before we felt that way after the first surgeries.  Now, I just need my Caiden with me too.  I miss him terribly and can't wait to get home to him.  I know he has had a blast with Grandpa Paauwe (and Grandma P too before she ahd to return home) though and we are grateful that Dad was able to be with him during this time.

I will post a few new pics soon, so check back for those.  As always, we thank you all so much for your love and support and conintued prayers for our Sweet Pea. 

Love and Peace,  Holly 

Free at long last

Just wanted to let you all know that Avery's was released today around noon and we brought her back to the Children's House.  The Kennedy Krieger inpatient rehab did not seem warranted or in Avery's best interest, so we opted to try to do some sort of outpatient thing with them when we return for Avery's follow-ups in a couple months.  We are eager to have a devleopmental evaluation done there at that time and see what ideas they may be able to give us regarding therapy for Avery (based on their experiences with other hemi patients).  We will start planning that once we have scheduled Avery's follow-ups with Dr. K and Dr. Jallo.

We can't say enough about the great care we received during this go-round.  Avery had many great nurses and doctors over the course of the 10 days she was at Hopkins.  Everyone really listened to Jon and I's input and explained things thoroughly.  We felt like we were included as part of her medical team at all times. The nurses did a great job taking care of Jon and I too...worrying about our rest and always asking if they could do anything or get anything for us!  Many Thanks to all those on Avery's team in both the PICU and on the 6th floor!  They all helped to make Avery's recovery go faster and smoother.  A great big THANK YOU to each of them!

It is such a nice day here.  Jon took Avery for a walk down at the Inner Harbor to get her some fresh air.  It is not to be nearly as nice tomorrow.  I stayed behind to try to get some work done and some rest (because I had little to no sleep last night at the hospital).  I wanted to go with them, but I was just too drained.  I'm sure we will do some other fun stuff since we will be here all week yet.  We have to follow-up with Dr. K and Dr. Jallo (to finish removing staples) on Monday or Tuesday next week before we can head home.  We are eager for that time to arrive as well!  We miss our Caiden immensely!

I will post some new pics soon...of Avery back here at the Children's House following a good bath and just before heading to the Harbor with Daddy.  I'm not sure yet what we will ultimately do with the hair.  It may be necessary to buzz it down and start over again.  A small price to pay for a safe surgery and easier recovery.  It's just hair anyway.

Jon and I want you each to know that your concern, support and love for our family means more than you may ever know.  Much of our strength during this time came from all of you.  Thank you so much!

Cheers to a blessed day and the beginning of the next phase of Avery's journey,

Holly   

Recovery Days 9 and 10: On the Home Stretch

Hello to you all.

Avery is continuing to progress each day, though she has been a little discontented yesterday evening and night and yet today.  I'm wondering if it has to do with her feedings...since we increased the rate yesterday moving towards bolus feedings again per what we do at home?  I just talked to Jon and he indicted that she is still a little restless right now, but the feeding rate was increased again today...so who knows.  I guess we will have to wait and see.  I'm getting ready to head over and switch Dad out for a while.  I'm hoping she will sleep some tonight, seeing how she kept me up ALL night last night.  She wasn't overly upset, but it was like she couldn't stay settled for too long.  She finally fell asleep at about 6:00 AM and was resting well still at 8:30 when one of the neurosurg docs came in to remove her central line.  Needless to say, that woke her up and ticked her off and after that she was NOT going back to sleep.  When Dad showed up a fews hours later, she eventually snuggled up on his shoulder and went to sleep (I'm not sure how long that lasted though).  I'm sure I've got my work cut out for me tonight.  In any event, she will hopefully be released tomorrow.  I'm not for sure if the inpatient thing at Kennedy Krieger is going to happen or not...and it might be better that it doesn't.  We are actually going to try to get in to see them as an outpatient this week instead.  After doing a little more research online, it makes sense as to why they don't usually send "babies" over there for inpatient rehab.  Day therapy might be an option though...we'll see.  Right now, Dad and I want to all be together at the Children's House at night!  What a luxury that would feel like right now.  We are not complaining though...we'll make any sacrifices to help our Sweet Pea get better.  We are still trucking along.  Thank goodness for CAFFEINE!  Hope you all are well and staying fluless this time of year.  I gotta go switch places with Dad.  Love to all!

Recovery Day 8: Moving Forwards

Avery had another good day.  She was transitioned to full-strength Nutren Jr continuous feeds and she tolerated that well.  I forgot to mention yesterday that I had gotten her to grin great big with the open mouth, toothy grin the day before.  I got her to more of that again yesterday too!  She is really coming around.  She still likes to be on Mommy or Daddy's lap, but I did finally get her to sleep in her bad last night...on her tummy.  I got to thinking that maybe her not liking being placed on her back has to do with her incision site on the back of her head or maybe it just feels different in some respect.  I got the idea of placing her on her belly after OT and PT came to see her yesterday.  They placed her on her belly at one point, and while she didn't love it, she didn't arch in response...just gave a normal fussing to it.  Anyway, it made it a little easier for us to geet some rest in her room last night.  She is now only hooked to her g-tube feedings and an O2 monitor...yeah!  It makes it much easier to manipulate her in and out of bed and into different positions.  The plan was to remove her central line today I believe.  Then she will be down to just one IV in her arm.  They may pull that too?  I got to take her for a walk yesterday in a stoller as well...we had to get a break from the room.  She was not overly thrilled with it, but it did her good nonetheless.  I took her to see the "Divine Healer" statue in the rotunda on our walk.  I thought it was time for her to see where it was that Mommy said a lot of her prayers while here.  Check the album for a pic of her by Him.  I just love going there and looking at the statue.  It reminds me that we are not alone and that whenever we are weary from our journey, all we have to do is lean on Him.  To see info on this staue, visit http://www.hopkinshospital.org/patients/pastoral.html.      

Jon surprised me yesterday by saying that staff from Kennedy Krieger Institute (a renouned rehab facility next to Johns Hopkins) had stopped by and said that Avery would be moved to their facility on Monday for rehab.  I was surprised because nobody at Hopkins had mentioned this to me (their assumption had always been that it wasn't neccessary for her since she didn't have many skills to regress on due to the surgery).  While Jon didn't seemed overly joyed by this (because we would still have to be working in shifts while she was there becuase someone has to be with her at all times), I was excited by the prospect.  So, I mentioned this to neuro and Diana when they came to visit that afternoon and they TOO were surprised.  They had not made a referral to Kennedy and they are the ones to do that for their patients.  Nonetheless, Diana Pillas and I talked about it and decided that if we thought she could benefit from it that she would contact Dr. Kossoff and get it set-up.  I indicated that I thought it was a good idea...that their therapists may be able to teach us some things, given their more frequent dealings with hemi patients, that we could take home and incorporate into Avery's therapy.  This means that we won't be back at the Children's House taking it wasy until going in for Avery's first post-op follow-up before leaving town, but I think it is worth the compromise.  I'm really excited to have her experience some really concentrated and targeted therapy...even if only for a week.  Check the Institute program out at http://www.kennedykrieger.org/kki_cp_cat.jsp?pid=1153.

Well, it is time to go see my girl today and relieve Daddy.  Thanks for the continued prayers and your comments.  We feel so very loved and supported by all of you.  Thank you for that!

God's peace,  Holly