Happy Birthday, Anna!

Anna Elizabeth is 8 years old.  Wow.  She has always been a pretty special kid; now she just has a whole host of experiences under her belt that most 8-year-olds don't.

Anna is kind, hard-working, thoughtful, and caring, and she has a pretty goofy sense of humor.  We loved watching her grow, learn, and change, from June 27, 2007 until February 2, 2014.  We have enjoyed watching her grow, learn, and change since May 5, 2014, when she was first discharged.  We will continue to enjoy her presence in our home each and every day.

Anna's birthday was a good day.  She woke up plenty early to her 8s hidden around the house, and then opened her gifts from Mom and Dad.

The siblings slept in that morning, so Anna had to wait a few hours before she could open up Kate's gift, and then Ethan's.

After goofing off a bit in the morning, we headed over to church as a family to get things set up for the party on Sunday.  The kids had a blast playing around in the gym and chasing each other downstairs.  They were all slightly disappointed when it was time to go home :)

After lunch Kate and Ethan ventured into the sandbox with Matt while Anna took a rest (since she was up the earliest).  The two younger kids didn't go back into the house (except for bathroom breaks) until about 7 p.m.  Awesome.

Anna and I played a few games in the afternoon before we all headed into the pool for some family time.  Dinner was Anna's choice: cheddarwursts, pesto pasta, sweet potatoes, and pumpkin cake for dessert.  Anna is getting more adventurous with the foods that she puts in her mouth to chew up, but that whole swallowing piece is still too tricky.

The birthday celebration on Sunday was wonderful!

We had a nice mix of guests ... church friends, school friends, neighborhood friends, a handful of former and current therapists.  Those who weren't able to attend sent along some meaningful birthday messages for Anna's scrapbook.

Anna had a cake created by a volunteer baker through Icing Smiles.  Not only was this cake beautiful and sprinkled with edible glitter, but it was delicious.

Anna and some friends chased each other around the gym and had fun before lunch started.

After lunch, the crowd headed across the room to the magician's performance.  He was amazing!  He did an awesome job of including Anna, and some of the other kids, in his show.

Kate and Ethan got to come up and help with a trick, too.

Surprisingly, Ethan cooperated very well.

 Even Matt was called up to be part of the show.

A few comments from the adults were:
"Where did you find this guy?"  (online website recommendations)
"He's got great crowd management skills."
"Did you hear those kids belly-laughing the whole time?"

 

I don't think this smile left Anna's face the whole time, nor the faces of the rest of the audience, to be honest.

Ethan was mesmerized for the hour long show.
 

We kind of wish we would have thought to take a video of it all, but we have some good memories of the event, and that's all we need.

Things wrapped up shortly after the magician's performance and we had great help getting everything cleaned up and put away.  Whatever extra food we had, we sent along with Matt to work on Monday; they're always glad to have treats ;)

All in all, a great birthday weekend for a great kid.

Prayers for Anna

Please give thanks that Anna has made it to her 8th birthday.
Please thank God that Anna continues to make progress with all of her skills on a daily basis.
Please give thanks for Anna's faith, kindness, joy, patience, and determination.
Please thank God for the village (or perhaps the city?) that is helping to raise Anna and bring her to her highest potential.

Please ask God to continue to bless Anna each day of her life.
Please pray that God protects Anna's mind, body, and spirit.
Please pray that Anna continues to impact those around her in a positive way.
Please ask God to grant Matt and I wisdom as we continue to be Anna's parents, through good times and bad.

Pre-birthday updates

Another summer week has come and gone.  This past week we had even fewer extra commitments, and thus were able to enjoy some additional activities and do some other things spur-of-the-moment.

On Monday Matt had an appointment mid-morning across town, so he ended up taking the day off; it was our anniversary anyway :)

After the acting class across town, we ended the day with a trip to the bowling alley.  The girls had both been there recently for birthday parties and wanted to return; plus, we figured that Ethan would get a kick out of the experience.  He sure did :)

In fact, Mr. Ethan got a strike the very first time he rolled the ball down the lane.  He continued to get a couple more strikes and a few spares.  Crazy child.

Wednesday, our no-therapy day, which turns into a bit of a free day for us, was another fun one.  The kids and I visited a nature preserve in Madison that is designed to be wheelchair accessible.  The paths are paved and there are a handful of fishing docks by a few small ponds.

It has been ages since we have taken any of our kids to a natural area (besides people's homes), and they came away from this one with some great memories, and a desire to return.  In comparison to the kinds of "hikes" we used to take as a family, this one was very, very tame.  But, like I said, the kids liked it so we may have to do it again.

After checking out the preserve, we headed over to Matt's workplace to have a picnic lunch with him.  Once upon a time, this was a fairly regular summer event for us, but last year was tricky.  On Wednesday we all had a nice time together, and we hope to be able to do this again on some beautiful Wisconsin summer days.

We ended up in the pool again that afternoon, even though the outside temperature was a little chilly.  All three kids are making some amazing gains in their water skills in just the few short weeks of summer we have had so far.  Anna can independently and safely move around the pool when she wears her life jacket; Kate has learned how to do flips underwater; and Ethan is getting more and more adventurous with moving from table to ladder to table to wall, etc.

Thursday morning is our early morning therapy day.  We are at the clinic from 8 until 10, and this week the kids were all a bit groggy and tired after the exciting Wednesday.  By the time we got home, the kids just wanted to be left alone for awhile.  In a matter of minutes, they all disappeared into different parts of the house to read (or look at, in Ethan's case) books of choice.

When we were at the library this week claiming prizes for the summer reading program, Ethan was left on his own in the Children's Library for 5-10 minutes while I was helping the girls sort things out.  I figured that he was just playing with the trains, which is what he usually does.  But then he pops out and says, "Mommy!  Look what books I found!  Can we bring them home?"  (Or something along those lines ...)  We checked them out, of course.  I wasn't too surprised, however, that in the entire children's library, he was able to find and pick out these four books.

On Friday, another no-therapy day, we got to hang out with Melissa in the morning.  Surprisingly, this was the first time we had any sort of visitor to our home, except neighbors and family, since summer began.  We have certainly enjoyed our peace and quiet, especially in comparison to last summer when hardly a day went by during which we didn't have 3, or 4, or more people come to our home; it was a bit of a revolving door situation all summer long.

The kids still love having Melissa come over, but we all have to take turns with her.  First Ethan wants to show her his trucks and trains, then I want to show off my garden, then the girls want to play babies with her.  Poor Melissa :)

We even ended the day with a playdate at a friend's house.  It was supposed to be at a park, but then the rain began on our drive there.  Our kids are getting very good at flexibility :)

Each day I am amazed by all of the things that we are able to do that would have never, ever been possible last summer.  I am immeasurably grateful for the opportunity to live more freely this summer.

Time for Prayers

Thanksgiving
Please continue to give thanks for the relaxed pace and expectations of summer.
Please give thanks that Anna's treatments are behind us and that her health is relatively stable.
Please give thanks for all those who helped us through the turmoil of last spring, summer, fall, and winter.
Please give thanks for our family's relatively good health right now.
Please thank God for Anna's continued progress in terms of her rehab.

Requests
Please continue to pray for all those working with Anna these days; the list is much shorter than it has been in past months, but the therapists could still use prayers for wisdom, peace, patience, strength, and flexibility.
Please continue to ask God to heal Anna's body.  We have all already seen amazing progress, but there is still a long way to go.
Please continue to pray for strength, peace, patience, wisdom, flexibility, and rest, especially as the summer continues and we need to begin looking towards the transitions of the fall.

Thank you, as always, for your prayers and support.

Continued Summer Enjoyment

Summer continues ... so far it's pretty awesome.  Of course we have had our ups and downs, as any family does, but the ups far outweigh the downs at this point.  And besides, our ups and downs are perhaps just a bit different from another family's ups and downs.

Last week was the start of Anna's therapy location's summer schedule.  We had many fewer places to be than we did during the first week of summer, and enjoyed the sunshine immensely.

My mom was in town on Monday and Tuesday, so I didn't have to drag Ethan along to Kate and Anna's first acting class, which is being offered through the therapy clinic.  I also didn't need to bring Ethan and Kate along to Anna's first 2 hour speech/feeding therapy session on Tuesday morning, with her third clinic speech therapist ... yet another therapist transition, but we are learning to appreciate a fresh set of eyes and experiences.

Wednesday was an open day.  Nothing on the calendar ... nada.  Hooray!  So what did we do?  I packed the kids up in the morning and we went strawberry picking.  We had a fun, and productive, time.

Kate was a great helper,

Ethan ate his fair share of strawberries,

And Anna kept telling me, "Mom, this is fun!"

We made strawberry jam in the afternoon and then froze the rest of the berries.

The day ended with another pool session.  Last weekend Matt put together a couple of PVC tables to put in the pool so Ethan could stand on something.  Now it's safe for me to be out there with all three kids.  We have a good time, and it's great exercise/experience for all of them.

Anna is usually the first kid out ... the water experiences challenge her system a lot, so she gets tired pretty quickly.  But while she rests in her lounge chair, Kate, Ethan, and I have a chance to be a little crazier in the water together.

Thursday was Anna's first 2-hour PT session.  Her therapist and I were unsure of how she would do working hard for that long.  Thankfully, Anna did very well on Thursday and even was willing and able to play with Kate in the afternoon, and then play in the pool again that day.

But ... she had a bit of a "therapy hangover" on Friday morning.  Extreme fatigue and lethargy, upset tummy, etc.  We were unsure of exactly what was wrong, but she perked up by the end of the day, so our best guess was that she overdid it on Thursday.

Friday afternoon was Kate's 6-year-old check-up.  She's very healthy.  46 inches tall and 49 lbs. ... about 75th percentile across the board.  We'll take it.

The open space times of the week were filled with playing on the mattress,

and some sibling tickling.

The girls also have enjoyed doing some writing and/or drawing this summer.

The girls have also enjoyed me reading to them in the afternoons and evenings.  I'm working through my stash of good, children's/young adult novels that I remember from my teaching days.

Saturday morning Anna's adaptive tricycle was finally delivered!  She had tried one out at therapy a few months ago and, after seeing how much she enjoyed it, we decided to invest in one for her.  Not only is it fun, but it's a great way for her to continue working on her core muscles and balance, as well as her leg muscles.  Unfortunately, the bike seems to be a little big, even though Matt researched the sizing as thoroughly as anyone can possibly do.  I have no doubt, though, that Matt will make adjustments in order to make the bike work for Anna.

We've already spent some good bike/trike riding time together since Saturday afternoon.

(Side note, with Kate's physical abilities, we are fairly certain that she would have learned to ride a two-wheeler sometime last spring or summer.  However, no one in the family had the time or energy to teach her last year ... so this is the year for her ... we hope.)

Sunday, Father's Day, was good.  Matt and I have apologized to each other a lot in the last couple of years for how much we don't celebrate special days for each other.  But we would much rather make fun, silly memories together whenever we can as a family than do something extra special on a certain day.

A few highlights of the day were having special foods at lunch, playing in the pool as a family in the afternoon, and going to Culver's for dinner :)

Kate and Matt came up with a game where Kate would stand on the handrail of one of the tables, and then do tricks.  Crazy Kate.

What can I say?  We love summer.

Time for Prayers

Thanksgiving
Please give thanks for all of the blessings we are able to experience this summer, especially in comparison to last summer.

Requests
Please continue to pray for our family's overall health (physical, emotional, mental, etc.) and well-being.

Thanks!

Summer begins!

This summer has started off very well for our family, even if the weather has been a bit cloudy and rainy these last few days.

Even before school was out, the kids and I had fun in the afternoons playing with some good, basic summertime kid toys ... sidewalk chalk, bubbles, buckets of water, etc.

Last weekend we did more together as a family than we did the entire summer last year. A morning visit on Saturday to the zoo with the Badger Childhood Cancer Network (more on that another time), an afternoon visit to a hot-rod show at the Alliant Energy Center, and a dinner out at Red Robin.

None of those activities would have been an option for most of last summer; the feeding backpack for Anna in addition to her ability to use public toilets (while supported) have made life much more accessible to our family.

We even were able to set up the pool last weekend ... just in time for it to warm up enough by Wednesday for a brief dip in the water for me and the kids - first Kate, Anna, and me and then Kate, Ethan, and me after Ethan's nap.  We are still working on a few of the logistics in order to make it safe for me to be in the water on my own with all three kids.

The first week off of school was still full for us.  Many follow-up appointments were scheduled after Anna's neuro-oncology clinic appointment in April.  I asked if they could wait until after school was out; Anna has missed enough school already and we didn't want her to be left out of some of the end-of-the-year celebrations.  Everyone agreed, so we coordinated the scheduling and ended up with two long mornings at the hospital on Wednesday and Thursday.  Anna still had her therapies at 8 a.m. on Monday and Friday because the clinic doesn't start their scheduling until next week.  So ... we all had to be up and out of the house early 4 of the 5 mornings, but it worked out.  And ... the kids and I were all together (for most of it, at least).

Wednesday morning Anna had her first blood draws without her port.  She did great ... no tears or needle aversions for her.  According to the labs, her thyroid medication is finally at the right dosage.

Anna also had another video swallow study on Wednesday.  Unfortunately, Anna's tongue strength is still not to the point where she can trigger her swallowing reflex consistently.  So that means they still don't know how safe it is for her to drink liquids.  However, Anna has told us a few times in the last few weeks that she has "felt something go down" when she tries to swallow.  The look on her face is priceless when she is surprised by this sensation.  And she is really proud when it happens - definitely a good sign.  So ... in spite of the rather depressing results from the swallow study, we are still hopeful that Anna will be able to eat orally someday.

Kate and Ethan came along for these appointments on Wednesday; they did great.  We needed to get a couple of bike helmets and a life preserver from the Kohl's Safety Center, and Kate was able to give her monetary donation from her birthday party.  Between the confined and sitting times, the kids got some energy out on the first floor :)

We ended our morning with a visit to P4, but didn't see many of our favorite nurses, so we did an impromptu visit to the PICU as well, Anna's first ever visit there.  She elicited many stares from the staff, I presume because they weren't quite sure if they recognized her.  We chatted with Lynne, the nurse practitioner, for awhile, and also ran into Dr. Iskandar.  Anna likes to trade jokes with him when she has check-ups, but we were caught off guard when he asked her if she had a joke for him that day ... too many other things on our minds.  Ethan, however, jumped right into the conversation and said, although not very intelligibly, "What do you call a guy with no arms and no legs in a pool?  Bob!"  The no-arms-no-legs jokes have been common ones in our home in the last year :)

After the relatively disappointing swallow study (and yet reassuring at the same time because Anna enjoyed having the food in her mouth!), it was good to spend time with Lynne and Dr. Iskandar and see their reactions upon Anna's abilities and demeanor.  It's all about perspective.

Wednesday afternoon was our pool time.  Then we spent the rest of the day outside.  I'm so glad we did, too, because we have had absolutely zero sunshine since that time.

Thursday I dropped Kate and Ethan off at a friend's house so they didn't need to spend another morning at the hospital with Anna and me.  The younger kids did great, of course.  They're pretty amazing and resilient, especially if they can be together to play and feel more comfortable that way when they are in a new place.

Anna had an endocrine check-up, a visit to the orthotist to have her ankle braces adjusted, and a new patient appointment with a GI specialist.

The endocrine visit was fine, but Anna is going to be followed by their department for years to come.  Just as her thyroid was in danger of being damaged by the radiation, so is her pituitary gland.  Her growth and physical maturation will be closely followed.

Anna's ankle braces are still fine, but they needed to be adjusted since her bones are growing again.  The specialist said that Anna will probably need to be casted for new ones in about 6 months.

The appointment with the GI specialist was good.  I was not looking forward to meeting yet another doctor with yet another specialty, try to summarize Anna's medical life in the past 18 months, and see if he had any "magic" answers.  Turns out he had some good insights.

During our conversation, we came to the conclusion that Anna may have been suffering from "slow motility" during the last year or more.  End of the day vomiting, often more than what has gone in recently; vomiting when her thyroid was off; vomiting when she was anemic; morning gagging; difficulty tolerating formula right away in the morning, etc.  The "slow motility" might all be related to (you guessed it) the tumor's location.  Stupid tumor.  A person's digestive system's functions are based in the brain stem.  It's pretty rare for anything to mess with that particular center, but apparently it can happen.  This could be one of the reasons she has thrown up so much, her stomach muscles just weren't functioning properly or effectively.  So ... Anna is starting on a new medication that could help.  The bonus for us is that one of it's side effects is sleep; Anna has slept until 6:30 or almost 7 since she started taking it ... that's 1-2 HOURS later than she usually sleeps!

Sometimes a fresh set of eyes and experiences is all you need.  But we're not putting all of our hopes on this new twist.  It'd be nice if several of Anna's continuing issues could be all related to the same thing and so easily "fixed", but I doubt it would be that easy.  Nothing ever is.

Friday afternoon I was feeling the need to do something fun with the kids.  So after Ethan's nap we headed downtown and went to the Madison Children's Museum; the children's museum was often one of Anna's requested activities after she started kindergarten.  I realized on the way in that this was the first time I ever went their on my own with all three kids.  Yikes!  But we had fun.  The nice thing about going there in the afternoons is that it is much less busy and I can keep an eye on everyone more easily.  We stayed until it closed and each kid was still having fun; we are looking forward to when we can go again.

Our summer bucket list is a bit more exciting this year than it was last year :)

Time for Prayers

Thanksgiving
Praise God for summer and all that it means!
Please give thanks that all of Anna's appointments were positive and relatively productive.
Please thank God for the sunshine and rain that makes our garden grow.
Please give thanks for our continuing peace, patience, joy, rest, wisdom, and energy.

Requests
Please continue to pray for all those working with Anna and our family, for their wisdom and insight.
Please continue to pray for peace, patience, joy, rest, wisdom, and energy for our family.
Please continue to pray that Anna's strength and coordination continues to improve and that her motivation stays high.
Please pray for all kids, parents, and teachers who are transitioning to summer mode.

Anna's Birthday Celebration!

Please join us for a celebration

filled with MAGIC

 in honor of Anna's 8^th birthday!

In addition to celebrating Anna’s birthday, we would like to take this opportunity to show our appreciation to everyone who has supported our family and helped Anna during the last year and a half.

  

Sunday, June 28

10:30 a.m. – 1:30 p.m.

(feel free to just stop by when you can)

Lutheran Church of the Living Christ

110 N. Gammon Rd., Madison, WI

 

A magic show will be performed by Great Scott starting at 11:30 a.m.

Food, drinks, and cake will be provided.

No gifts or cards, please.  Anna will be accepting donations for the American Family Children’s Hospital for anyone who wishes to donate.

An opportunity to write birthday messages to Anna will be available.

If you are unable to attend, but would like to make a birthday greeting for Anna, please create it on an 8x8 piece of paper, or simply email it to us.  We will be gathering all of the messages to Anna and putting them in a small scrapbook

 

Please let us know in person or via email (themischnicks@charter.net) if we should plan on you and your family for lunch.  Thanks!