We're Home!

Sunday morning at 8:30 Haley had her final therapy session where Beth made new casts of her legs and feet to make a new set of braces as the others were not to their satisfaction (it's funny how every PT has a different opinion)--and Haley had complained of pain while wearing them since the week we got them, so it's probably best that we got ahead and get this done.  We saw her walk and move around a little more in the play area--and little Irwin, who also had the rhizotomy was just going like gangbusters!  He's going to do amazingly well very quickly.  They said goodbye to each other and maybe we'll run into them in 4 months when we go for follow-up.

It's so great to see Haley walking--granted it's with alot of help, but seeing her right AND left leg swinging forward to take steps so freely is just amazing to watch.  We have to remind ourselves as to who's child we're looking at!

Sunday afternoon we arrived home and though we were all very tired, we eagerly awaited Papa and Nana bringing Brynna and Roslyn home.  It was so good to be together again as a family!  We sure had fun "skyp-ing" them every day--that was such a high-lite for Haley and it was the very thing that brought about the first smile the 2nd day after surgery!

Monday---we had our first "at home" therapy as we usually do anyway with Julie and Pat over at St. John's hospital pediatric rehab.  Haley was a little lethargic getting started with Occupational therapy (OT), but perked up as the time progressed.  Julie (who's worked with Haley now since May 2006) could tell a huge difference in the way Haley was moving her left arm--it was free-er and more active!  Pat (our PT) could also tell a major difference and was pleasantly surprised at how free her legs were in moving around during floor play, etc.  Overall we are on our way in the next weeks to seeing a new Haley!  Monday and Wednesdays we'll be at the hospital for therapies, and Tuesdays/Fridays will be at Haley's school with her PT's there.  The next month will probably be the most challenging since we are needing to give her full attention now at home--which is challenging with a 2 yr old and 3 month old!  But, we know that this is temporary and things will get better!

Praying for baby Matthew...

     Saturday evening, after Haley's bed-bath and dinner, Lynel took Haley in her wheelchair to the Ronald McDonald room on the 5th floor in order to purchase 25 cent soda's for Jeff and Lynel was wanting their McD's coffee!  Haley wheeled herself around and she was excited to chat with the folks in the tv area.  While eating our snack of popcorn (that Haley had asked the volunteer if she could have some), we met Brandi, a mother of a 1 month old baby boy--named Matthew, and she began telling me of her story.  Matthew is a twin and his perfectly healthy brother is at home with the rest of her family (she has 8 children now) down in southern IL close to where Jeff is from.  Matthew, on the other hand, was born with spina bifida (a neural tube defect in the same family as Haley's --except her opening was not in her spine, but in her skull), and he also suffers from hydrocephalus and has a shunt--also like Haley.  But, along with the physical defects, he is also suffering from a shunt infection, and a "suspicious pocket" on his brain.  Lynel immediately knew there was a special reason for them meeting. 

     As Lynel started sharing about Haley and the journey of her life--Brandi just stared in disbelief at Haley (who was smiling and talking with the people in the room) and we had a great talk about faith, God and our need of him in our lives and it's through these times when we see our children hurting or if we're in a situation we can't control--it truly tests our faith and encourages our hearts to depend deeper and stronger on the Father. 

    Lynel got the privilege later to meet Matthew--such a precious baby!  He really needs prayer--as his fluid levels surrounding his brain have not been adequately controlled, and he's just a sick baby.  He can breath and drink from a bottle--which is all good, and hopefully the infection will clear soon.

It was such a reminder for me--and Brandi--that these babies ARE precious--and I directed her to Psalm 139 as Jeff and I have read that repeatedly.  The heavenly Father has a special plan for all of us and we need to live the life we've been created to live--and that includes special needs children.  They are not "throwaways" or people to be overlooked.  I told her how much I've learned about myself and about the Lord just by watching Haley interract with people.  She's been a priceless gift for us.

Saturday Day 5 after surgery

It's been another big day as Haley continued her routine of two physical therapy sessions and today it was with Robin.  Each day we can see a difference in her strength and range of motion.  Today we got to see her take steps for the first time--she had to have a lot of support, but she was moving her legs very well by herself.  It can be alarming for some parents when they see how floppy their child's legs are after this type of surgery--and Haley's legs are floppy, but it's also a joy to know that she's so loose and that now she's been given a second chance of sorts--to learn to walk again while rebuilding the muscles that were meant to be used but couldn't before. 

     She could roll over by herself and she wanted to go on the floor and we could tell she was thinking she could just move around like she did before, but quickly realized that something was very different and she was more cooperative with the therapist after that!

This is the Ronald McDonald House on West Pine Street -- a huge house that can host up to 39 families!  We've met folks from all over the country staying there.

Tomorrow morning Haley will have her last PT session at 8:30 and then we begin the discharge protocol and pack up to go home sometime after lunch.  Jeff and I have felt a little anxiety now about bringing her home--we are glad to go home and be with our other 2 sweet girls and be a family again, but we are feeling a little overwhelmed by the amount of ongoing care Haley will need.  She will need someone with her if she moves around and she is required to do as much weight bearing and walking as possible.  Haley will have to miss the next 3 weeks of school as she continues to heal and build more strength.  We'll also begin our home regimen and will take her to PT at the hospital monday and wednesdays and to the school on tuesdays and fridays.

It will definitely be "one day at a time" and fortunately we have some who are willing to volunteer to help us at home for awhile until Haley is back at school.  Thank you for reading and joining us on this special part of the journey with Haley--hopefully your faith in the Lord continues to grow just as ours has.

Friday Day 4 after surgery

What a day we had today!  Haley slept well last night and after a quick breakfast, Beth, the morning PT, came in the room to show us how to position Haley to a sitting position and how to lift her up out of the bed.  It was the first time for Haley to sit up at a 90 degree angle and to also sit up in her wheel chair.  She was a bit wobbly and had a little difficulty holding her head up, but in a short amount of time, she was already improving.  Jeff was the first to practice lifting and positioning with her and she was allowed to leave the room and so we headed to the 8th floor  to the play area.  We got to see lots of smiles from Haley--it was so good to see a little of her old self again!

Haley with her favorite nurse, Julie.

Irwin and Haley playing basketball!  Irwin is a 3 year old boy who came all the way from Louisville, KY who also received the rhizotomy surgery the same day Haley did.  He's doing very well and such a sweetie!

Haley could only be upright for 1 hour -- so we headed back upstairs where she had a nap as she was pretty worn out.  Micheal, another PT arrived at our room by 1pm--who we found was like a big kid--he has tons of energy!  Haley immediately liked him and we headed to the 4th floor gym area where Jeff and Lynel learned how to stretch Haley's muscles and good positioning for standing.  It was truly amazing when we felt her legs while stretching--she is so loose!!!!  Before, it would take almost 2 people to stretch her legs out and now it's such a breeze with just one person--just amazing.  She also tolerated it so much better.  We could still feel how tight the tendons are, but in time that should change.  

Then, the part we were most anxious about -- could she stand???  After teaching Haley how to sit back up from a lying down position, he placed a bench under her feet and with Jeff behind her supporting her bottom, Jeff said he could feel her muscles working as she pushed on her legs to stand up!  It was just such a great moment to know she was not standing just by using the spasticity or tone that had been there--she was now using all the appropriate muscles to stand like you and I.  She was weak and it wasn't a long time standing, but it was wonderful to see.

   On the way back to the elevator we explained Haley's story to Michael and he was amazed at where she had come from and according to what he saw from her today, he said he felt confident she would do quite well.  

     Dr. Park came in to quickly see how she was doing this afternoon and he said that the best therapy she can do for herself is to "walk, walk, walk"....it's hard to imagine her walking more now than seeing her crawl all the time--we have hopefully rounded a corner where she will no longer be crawling everywhere, but walking everywhere!  (with help of her walker, of course--but hopefully later on independently!)  

Thursday 3rd day after surgery

The big talk around the hospital was the snow storm coming through late Wednesday so we were glad that we didn't have any traveling to do.  Being up on the 12th floor we watched the clouds roll in and the big puffy snow flakes begin to fall.  Just above us we could hear alot of activity from the helicopter --we had just seen a brand new baby brought in the PICU as Haley was being transported to the 12th floor.  The nurses said it was a busy day for that particular aircraft--which they never like to see.

We had another surprise visitor last night--a good friend of Jeff's from seminary and fellow music minister, Daron Caswell from Hannibal, MO had come to check on us and see Haley--also on his way to pick up Sandy, his wife who had flown back to St. Louis from seeing family.  It was great to see another familiar face and to visit for a short time.  

This morning the ground was covered with about 3-4 inches of snow as we made our way back to the hospital.  Haley had a good night and for the most part had not noticed that we had not been there.  She opened up 3 more cards that came in the mail and also some gifts from Nana--but it was not the gifts that made her light up...

Jeff asked his mom, Trudy to download Skype onto her computer (it's free) and we were able to connect with her computer and be able to see her, Brynna and Roslyn on our computer screen and us on theirs--technology is wonderful!!  Haley just lit up and it was the first smile and laugh we had seen/heard in 3 days!   It was great to see them and for Haley to talk to her sissies--Brynna enjoyed seeing and talking to Haley and they waved at each other and chattered for quite awhile.  By the way, the girls are doing great for Nana--better than they do at home! :)  Tonight we plan on doing it again so Papa and Haley can see each other before bedtime.

Today, Haley was taken off of the fentanyl at noon and now is on oral valium every 6 hours but her last dose of that will be tonight at 6pm.  Her incision looks wonderful--no redness at all, but she cries fairly often saying "it hurts" and asks for her back to be rubbed.  The nurse said that in the 5 years she's worked here at Children's she has NEVER seen a child come out of a rhizotomy surgery with an infection--so we were encouraged about that.   So far she's been able to keep down a few bites of oatmeal, some french fries, mac and cheese and some chicken noodle soup--so, we're sure hoping she can be released from her IV perhaps this evening!

The nurses have been wonderful and are very skilled (which is nice being on the neuro floor as they're used to kids like Haley) and they came in and gave her a much needed bath and shampoo and massaged her with lotion--which Jeff and I envied!  She's now in her own "Little Mermaid" PJs and zonked out.

Tomorrow will be busier and she should be more awake as the drugs are taken away.  Physical therapy will begin friday evening  and she'll be able to finally sit up--which will be wonderful since she hasn't been able to see the tv lying flat or to even sit on the potty--which is just driving her crazy that she has to use a diaper.  

Each day continues to get better and we are grateful that the Lord has kept her close to Him.  We still meet families every day with unique circumstances and try to share the Lord with them if the opportunity arrives.  Thanks so much for the phone calls, cards and emails and especially the prayers!

Wednesday - The Day After Surgery

We have just been moved up to the 12th floor--her room # is 12E8
If you want to send a card:
St. Louis Children's Hospital
Haley Willis Room 12E8
One Children's Place
St. Louis, MO 63110


After 2 hours of surgery, Dr. Park came by to let us know she had done well and that "it should help her".  Shortly afterwards we were happily surprised to see our Assoc. Pastor Steve Ford from our church in Virden, IL (where Jeff also serves as the interim worship pastor).  Steve was able to go back with us to the recovery area to see the first glimpses of Haley after surgery and she immediately knew who he was--and also tried to talk him into taking her IV out!  :)  It was good to see a friendly face and he prayed over Haley there before leaving.


 Haley had a fairly good first night in the PICU. As expected, she complains of headache and pain in her back due to muscle spasms and of course her IV and especially her blood pressure cuff that is on her calf of her leg. However, she asked for a "Pepsi" to the nurse this morning--so it lets us know that she must be on her way back to her old self. She sleeps mainly most of the time while on the Fentanyl and Valium and we're looking forward to thursday when they'll begin to ween her off of the Fentanyl--though, we've been warned that she'll become more fussy and cry and it's mainly coming off the medication.


One of the rhizotomy team doctors came in the room last night before we left and he said that she had done well during surgery and that Dr. Park had cut approximately 75% of the nerves that lead to her legs. As the nerves branch off in groups of 4, he said that only one nerve out of each group of 4 nerves is kept uncut. Pretty amazing when you think about it--that's a lot of nerves cut!


Already this morning as we changed her diaper (which she hates--she's such a good girl using the potty) we could feel how loose her legs are! It's amazing how relaxed she is---we haven't felt her this way since she used to receive the Botox injections almost a year and a half ago. But, she is still able to wiggle her toes--which are now unclenched!! And she can move her legs and bend them like normal which is wonderful to see. We're really looking forward to when we can see her in her walker! We know she'll be weak and shaky, but it shouldn't take long to build up some strength.


We have also been doing some writing in the hopes that we'll be able to finish our book sometime in 2010 about Haley's life and our journey with her. Many people have asked us if we have a book about her story--and we really feel like the timing is finally right to get this done. The Lord had done such wonderful miracles in Haley's life that we've gotten to witness---and we hope we can share with as many people as we can how great God is and what a testimony of God's mercy, grace and hope in the life of Haley.

Tuesday-- Surgery Day

We had a good time last night over at the Chesterfield Mall  where Haley ate her favorite food: pepperoni pizza and did her favorite thing...ride the carousel (the dolphin this time) and so she enjoyed herself thoroughly.  This morning she had difficulty understanding why we weren't going to eat breakfast but by the time we got to the hospital it was the first time that we have seen her get pretty emotional as her memories of previous surgeries were coming back to her.  I think it was harder on us than before just seeing how scared and nervous she was.  

One good thing was the nurses wearing the blue puffy "hats" and it always makes her laugh to see them walking around with those on.  Soon she was smiling and laughing a little--but once the conversation focused on the surgery, she buried her face in Lynel's chest and cried a little.  We prayed with her in the room and also lifted up in prayer 2 other little children of families that we met this morning--one with a 7 month old baby boy getting his 2nd liver transplant and the other a 24 week preemie who's mother we met at the Ronald House. 

After receiving Darvaset (sp?) to relax her, Jeff carried Haley with the team to the surgery door where we kissed her and handed her off to the surgical nurse.  We went to the cafeteria to eat and are now in a private waiting area where we just received the call that Haley did well going off to sleep and Dr. Park began procedure about 1:05.  We should hear within an hour how she's doing and the surgery itself should take up to 3 hours.  

I wish I could say that this being her 9th surgery in her 6 1/2 years of life that it gets easier...but we think it gets harder now that she understands more.  But, as we meet other families and hear their stories, we feel VERY BLESSED and we know that Haley has been a special gift to us.  So far since being here, she has brightened people's faces and it only takes a moment that she makes a new friend with a smile and saying "hi!".  


We will keep you posted when we hear more...thank you sweet friends and family for lifting her up in prayer.

A New Chapter Begins...Monday Pre-OP

We had a good trip today and made it to St. Louis Children's Hospital for our first appointment at 10am.  We met up with the physical therapist and walked into a room with a wall lined with mirrors and instantly Haley loved it--she is just loves looking at herself clapping, moving around etc--so she was very excited and  it was a great motivation tool.  After changing into shorts and a t-shirt, the therapist, Deanna, had Haley walk across the room with her walker, practice standing up as she sat on a bench, walk up and down stairs, side stepped, crawled and other floor activities while someone video taped it all.  She also took measurements of her legs, feet and hips to check the spasticity.  In 4 months they will do the same thing again and hopefully we'll see significant improvement!  We did find out that her new braces we received last week are not quite to their satisfaction and so she'll have to be re-casted for new braces probably on Sunday here before we leave the hospital.  

Later we were dismissed to meet up with Dr. Park's assistant where she listened to her lungs and did health history.  After lunch we headed downstairs to Radiology at 1pm where Haley laid on her tummy while the doctor came in and marked her back the location in which they'll make the incision (between L1 and L2 where the nerve grouplets branch off).  I guess you can say that the "X" marks the spot!!

So, after 2 Beanie Babies, and 2 books, stickers, suckers and lots of smiles later--she had a very good day!!  And, to top it all off--the Lord answered our prayers as we found out that the Ronald McDonald House had a room for us.  We will be staying here through Saturday night and it's a huge savings for us so we can stay close to the hospital.  Haley was very happy to see a nice play room.

We're getting ready to take Haley shopping, eat at a place of her choice and perhaps see a movie...all at her request. :)

We report for surgery Tuesday the 5th at 10am and surgery will be around 12:30pm.  We will give more updates later.