Sunday, May 11, 2014

Annalise

It has been far too long since I have written an update on Annalise.  I think that I have been waiting until things in her progress changed for the better, but reality is, the last few months have been very tough on her and we are still waiting for the change for the better.  Maybe by writing out all that she has been going through will help turn the tide!  It's worth a shot!

Annalise appears to have gone through another phase of regression.  She has been sick multiple times over the past 6 months and with each illness it seemed like she moved a little bit further away from where she was.  That usually happens when they get sick, but most times it is temporary and although it takes a long time to recover, they often make it back to their past normal.  This time she just doesn't seem to be bouncing back.  We seem to be dealing with a new normal. Some of the things we have noticed are:

--Increased spasticity in both her upper and lower body.  She is so tight much of the time.  Lots of stretching, massage, and oils help with some of the increased tightness and the pain that comes with it. 

--Probably the biggest thing is her increase in fatigue.  She gets tired/runs out of energy so quickly.  Where she used to be able to walk in her walker most of the time, she is only able to go short distances now without getting so tired that she needs to be carried.  She is spending a lot more time in her wheelchair now then she has ever had to.  She gets tired when she is trying to hold herself up in her chair to eat.  As always though, she has good moments and bad moments.  She still has times throughout most days when her voice is strong and clear, or she is able do more.  We love those moments!  It's just that those moments have gotten a bit shorter and fewer and farther between.

 --decreased strength throughout her body.  When crawling, her arms often give out from under her and she ends up falling onto her forehead.  It's kind of  hard to explain, but her crawl now consists more of just sitting back on her legs and slowly pulling herself forward with her arms while scooting her backside along. Honestly, she doesn't do a whole lot of crawling anymore.  She has gone more to lying on her stomach and pulling/wiggling herself forward whenever she is out of her walker.


--Considerably more scissoring of her legs.  She can hardly walk more than a step or two now without her feet getting tangled.  She has to stop and really focus on getting them apart so that she can keep walking.  It appears that this is more of an issue with her hip rather than her feet and very possibly being caused by her increased spasticity and decrease in strength.   We have spoken with multiple doctors about this over the past few months and multiple times I have heard "it looks like progression of the disease.  There is nothing more we can really do about it at this time."  


Like always, I wasn't really okay with that answer so I started talking with therapists and other moms.  We have found a new type of AFOs that are more flexible and that seem to be helping some.  We are currently looking into a brace (and hoping it will get approved by insurance) that will give her hip some support and help keep her legs separated when she walks.  Hopefully that will make things a little easier and less frustrating for her. 

--The end of January, Annalise had a swallow study done.  They did not see any aspiration, but they did see some penetration which is when the food or liquid goes into the trachea and stays above the vocal cords.  Our GI was concerned about this because if they see penetration during the few minutes of a swallow study, it is possible that there is some aspiration going on as well.  Annalise did have pneumonia this year and does have trouble with getting dehydrated quickly...both of which can be signs of silent aspiration. 


--Annalise has had multiple fits of uncontrolled laughter and/or crying.  It seems to be most evident right after she has been sick.  When I first noticed it, we just thought she was being silly...because she does have those times.  However, as it continued on for about 3 days that time,  and again a few weeks later when she had been sick again, it appeared more and more that it was happening at odd times and places and that she did not seem to have control over it.  After "laughing" for 3 days, she spent about a day and a half having "crying" episodes.  Again, they came at odd times and did not seem to be controlled by her.  After seeing this happen multiple times, I spoke with her neurologist who decided to order an EEG with hopes of ruling out seizures as the cause.

So in April, Annalise had her first EEG.  Although it showed no seizures, the EEG results came back abnormal because of some "slowing of the background".  Dr. Narayanan also said there was a "fair amount of electrode artifact throughout.  But there were times when she had a nice 9 Hz background rhythm".   I still don't completely understand what that means so I will be talking more with him about that this week.  Either way, it looks like the laughing/crying fits are not due to seizures, so why that is happening is still an unknown.   There really are so many things that are still unknown. 

I think those are the major changes we have seen.  Less then a month after the wonderful miracle we saw of  her taking a few independent steps, she got sick and has never completely made it back to her normal.  I have not given up hope that she will be able to take steps again, but as of now, she is no longer able to even stand independently at all...not even for a few seconds.  It is so frustrating to see how long it takes for her to gain these milestones and then how quickly they can be lost again.  So frustrating!


On a positive note...Annalise is one tough little fighter!  She is so determined.  She is independent in every way she possibly can be.  She lives life to the fullest that she possible can and does not seem to want  to waste one minute of it.  As some things become harder for her to accomplish, she figures out other ways to get what she wants/needs.  She is not going to give up this fight easily.


Her imagination is still going strong.  She comes up with some of the funniest and most creative things.  She is beautiful and continues to grow taller and taller.  She often talks about swimming with dolphins and living in a castle.   When I get her up in the morning, she loves to tell me all about the dreams that she has...her latest one is a dream where she is swimming with a pink dolphin.  :)  Overall, she is a happy!


 

Although it hurts my heart to see my baby girl struggle, it makes my heart happy to spend every moment I can with her.  She is the joy of my life, the princess of our home!

Saturday, May 10, 2014

CP Clinic

Yesterday, I took Bryce to the new Cerebral Palsy Clinic at Phoenix Children's Hospital.  The Orthopedic Surgeon that has been seeing our children over the past 5+ years started this clinic because he wanted to be able to give children better care, in other words, be able to spend more time with each individual child then he is able to in the clinic at CRS.  This is where we have seen him in the past and honestly I dreaded every appointment with the ortho clinic there, so I was excited to check out the new clinic at PCH.

Since it was our first visit there, and Bryce needed quite a few "upgrades"  we ended up being there a little over 4 hours.  Usually, I would not be happy about spending that much time for one appointment, but today was different.  Today, all but about 1/2 hour of that time was actually productive.  With the help of the PT/OT team there, we were able to get him fitted and casted for much needed new AFO's and hand splints.  We also got scrips for other equipment that he has been needing at home.  With children like Bryce and Annalise whose needs/abilities vary so much and so often, we need people who understand their needs and who know how to deal with insurance and other companies to help us get the things that they need.  Today I honestly felt like I was able to work with some of these people.  I feel like they listened to me and took the time to work with/get to know Bryce a little better so that they could know what he needed.  It was a very nice change.

 After that, Bryce got x-rays again of his hips which he does every 6 months because of  the hip issues he has.  This was the first time that Bryce did not cry, due to fear, during his x-rays.  I'm so proud of my brave boy!

Then it came time to meet with the doctor.  He and his nurse came in, sat down, and talked with us while checking Bryce over for about 30 minutes.  30 minutes!  I have never had an orthopedic doctor spend more than about 5 minutes with us.  The only bad part was the news that he had for us.  Bryce's hips have gotten bad enough that he is going to need complete hip surgery within the next 6 months to a year.  :(  We have known for a long time that this day would eventually come, but I really wasn't ready for it now.  I guess I never really would have been ready for it though, so it is what it is and we will think about our options, pray about it, and make some decisions.  The doctor did say that Bryce's case was one of the best he has seen as far as the amount of time that the adductor lengthening surgery  kept Bryce from needing full hip surgery.  The plus about that is that the older Bryce is when he receives the hip surgery, the less likely he will be to need another one later in life.  At the age of 8, which is about where Bryce will be when he has this surgery, there is only about a 5-10% chance that he will need it again later.  I hope and pray that he will be one of the 90-95% that will not.

It was a very long day, especially for Bryce, but he did so well!  When we were finished though, he was very ready to get out of there.  So while Bryce was briefly mesmerized by the dancing flower lights on the wall, I made a quick call to be sure our older boys had made it home from school and that they and their dad had begun their trip to the Father and son's camp outing.  I then grabbed some lunch at the cafeteria (it was 3:45 by then after all), and headed back to the Ryan House with it where we will be staying for the weekend.  It was so wonderful to only have to drive for about 5 minutes to get "home" instead of our usual hour and then to have many people here to care for Bryce and Annalise so that I could go into my room and process everything that had happened at the clinic visit.   We are so very blessed to have this home so close to us.  The third one in the US is being built now and my hope and prayer is that someday there will be respite homes like Ryan House throughout the United States. 

Thursday, April 17, 2014

Happiest Place on Earth

The plans for converting one of our rooms into a therapy room has been in the making for quite some time.   Today, a very fun piece of that room was completed.

Last week, Gina from I love murals  came and began painting a mural in our soon to be therapy room.  Today, she came and spent about 8 hours finishing it up!  We may not be able to get to Disneyland often, but this room has definitely become one of our happiest places on earth!


Bryce and Annalise's first reactions to the mural (before it was even finished)  Annalise kept looking at all the different parts of it and talking about each one...especially Micky and Minney!

 To make a long story short, we met Gina through Bryce and Annalise's speech therapist, Laura, who met her while at another child's home doing therapy.  Gina was interested in doing a mural for some children who were going through some type of medical challenges.  Laura thought of Bryce and Annalise and brought me Gina's information.  From there, the rest is history!


Gina first came out to meet us and see our home and discuss where we would like the mural.  We decided on the therapy room.   Gina was so easy to talk to and I felt comfortable with her right away.  After she left our home that first day, I looked at her website and was very impressed with what I saw.  I was super excited to start thinking about what we would like in that room. 


I thought about all of the things Bryce and Annalise like.  I tried to think of something that would be outdoors (a favorite for both of the kids) and something bright and cheery.  They both love Micky, Minnie and most everything Disney and have for some time.   I really wasn't sure what would look good, so I gave Gina some very basic ideas of what I was thinking and soon this idea was born. 

Gina came to our home one morning and began the project.  What once was a plain white wall, was becoming something fun for Bryce and Annalise and everyone who passes through that room.   


Gina worked for many hours that first day and then returned today to finish it.  I can't believe all the detail in this mural.  Gina is a VERY talented person!  It was so fun to watch her work and to talk with her as she did. 




I took this picture to show a little better, the size of this mural.  It's huge!  

Personalizing it!




We all love how she made their names truly look like they were carved in the tree.
I'm going to tell you something that you are not going to believe.  This was Gina's first time doing Micky and Minnie!  First time!  Look how perfect these pictures are and on a first try.  Amazing!

Annalise decided on the color of the ball.






Look at all the detail in that tree.   My older boys were very impressed with everything Gina did.  Actually, so was I!



One very talented and thoughtful person!



The finished product!  I love it.  Bryce and Annalise love it.  The older boys love it.  The cousins love it.  Bryce and Annalise's care givers love it and I am sure that the therapists and all who visit our new therapy room will love it just as much as we do.  


We have found that it is very difficult to walk by this mural and not take a good look.  It is also difficult to keep a smile from your face as you look at it.  It truly makes us happy just having this in our home.   Once again we feel very, very blessed to be the recipients of such a selfless act of service from a person we did not even know.  Gina told me that she knows that her talent comes from God and it is meant to be shared!  She is doing a great job of using her talent for good.  Just this past week, she was approached by someone at Make a Wish and asked if she would like to be involved with them for those children who choose room make overs.  Gina jumped at the chance and will now be bringing a little bit of fun into many special children's lives.

Thank you, thank you, thank you Gina!  What a wonderful person you are!  I am so happy to have the mural, but I am even more happy that I have gotten the chance to meet you and get to know you a little bit.   I am so very happy and thankful to now call you my friend!

Everyone, please be sure to check out Gina's website at http://www.ilovemurals.com/ and pass her information on to anyone and everyone you know who is looking for a mural for their home, office, or anywhere they need a little extra happiness while here on Earth.

Sunday, April 6, 2014

A Fluke?

Well, it looks like the fact that Bryce was telling time may not have been real after all.  Since that week they have worked with him some more on time telling and it appears that 1:00 is the only time on the clock that he consistently answers correctly.  1:00 is an important time to him though because at school, that is the time when the "work" part of the day is over and the social part begins.  Go figure!  :)
His teachers have decided to hold off a while longer before working any more on telling time which is fine with me.  They will still present it to him occassionally and see what they get, but obviously not try to push anything.  However, until that time they will continue working on the other things that he is catching on to.

Reading is one of those things.  He is learning site words...knows about 22 as of now I believe.  He is reading (silently of course) phrases/sentences using these words and then successfully matching them to the correct picture given an option of two. 

According to the report I get home each week, he has been completing "I see a ......" sentences based on a picture shown.  For example, if they show him a picture of a yellow ball, he will then choose, using eye gaze, the correct words to match the picture to complete the  "I see" sentence. 

In math, he is adding two groups of items together and choosing the correct answer most of the time.  He is also able to sort items by small, medium, and large.

He and Annalise both have begun Music therapy at school and are LOVING it.  I knew they would.  One of my favorite things is to hear Bryce "sing" along to songs while we are in the car.  I need to get some video of him singing one of the songs from Frozen or our Vocal Point CD.  He definitely has his favorites!

Friday, March 21, 2014

Telling Time?

Bryce has been holding out on us again.  Or maybe (obviously) I just haven't asked him the right questions to find out what he knows.  I learned this morning of something else Bryce is able to do.  He can tell time!  I knew that he would watch the clock and know when it was time for recess or something like that, but he could have just known what the clock looked like when it was that time...since it is the same every day.  I've wondered about this!

Well, today his Para at school said that she has been working with him and she now knows that he is able to actually tell time!  She has been holding up a clock, setting it to a certain time, 1:00, 3:00, etc, and asking him what time it is.  She then lets him choose (with his eyes) from multiple options.  She said that he has answered correctly with every one of the "on the hour" times that she has asked of him.  Every single time!  She did say that he made a couple of mistakes on things like 1:30, 3:30, etc, but otherwise got every other one correct!  She has just done on the hour and half hour so far, but who knows how much more that boys knows.  I'm guessing it's a lot!

What really amazes me is that no one has ever sat down and taught him how to tell time.  He just knows!  He has just picked it up by observing and listening to what is going on around him I guess. 

Unbelievable, okay, not really, but I am just so thrilled to know that his brain is working as well as I have always thought it was.  I love that someone outside of our home is actually discovering this and continues to find new ways to challenge him and discover what he knows.  

I cannot wait for this boy to get home from school so he can show off for me as well!  :)


Monday, March 10, 2014

Fashion Show Fundraiser

March 15th!  It's less than a week away!


I have to tell you, the goodness of people never ceases to amaze me.  A while back I got a call from my friend Luhanna Chesley.  She said that she, and her Mary Kay director, Linda Christenson, want to do a Mary Kay Fashion Show Fundraiser to earn money for Bryce and Annalise.  Linda is from California and will be coming to Arizona on March 15th just to do this fundraiser for our children.  She is also planning to do one in California as well.  Here is the information on the one here in Arizona.   We will be there with Bryce and Annalise.  Anyone and everyone is welcome to come! 
When:  Saturday March 15th at 1pm.
Where:  8220 E. Garfield St.  Scottsdale, Az.
Cost:  $10 at the door.  
There will be an awesome door prize, and other raffle prizes to be won!
The audience will be the judges, so we need as many people as possible to help cheer on their favorite model.  

I wasn't sure what to say when Luhanna approached me about this fundraiser.  It's a pride thing I guess, but it is hard to accept money from other people and to know that they are putting so much of their time toward helping our children/family when I know that there are so many other families out there who are in greater need and who go through so much more than our family does.  The volunteer models are regular people just like me and you who are giving up their own time to help our children.  Most have never met Bryce, Annalise, or anyone in our family and yet they want to help us.  Wow!  It's just amazing to me.

Luhanna has put my mind at ease through this process and made it a breeze for us.  I am so very, very thankful to Luhanna, Linda, and all of the people who are volunteering as models in an effort to raise money to help with our children's daily care.  Every bit of money that is raised during these fundraisers will go toward the daily costs of caring for Bryce and Annalise including feeding supplies, therapy supplies, durable medical equipment, medical supplies (that are not covered by insurance), and maybe even an adapted toy or two for Bryce.

Again, we are so, so very thankful to everyone who is working so hard to make this fundraiser a success.  I know that I will not even get to meet or thank most of you personally, but I hope that you know how much we appreciate every bit of time, money, thoughts, and prayers that are spent and said in behalf of our children.  We are very blessed!  Thank you!

Sunday, January 26, 2014

Month Full of Dr. Visits

Annalise and Bryce each have their own way of entertaining themselves while waiting for the doctors.  These pictures were taken while we were waiting for the Physical Medicine doctor.  Annalise had fun creating a puzzle with the blocks and Bryce had fun trying to kick over the bucket that held the blocks that Annalise was playing with.  He would kick it over and over and just thought it was the funniest thing. 
This is part of the mural that is going up on the walls of the new CRS building in Phoenix.  Annalise picked out this hot air balloon with Mickey on it right away.   They both love anything Disney.

Bryce and Annalise have had a very busy month.  In this month alone, Annalise has had 7 scheduled appointments and Bryce has had 3.   Unfortunately a couple of these appointments have led to other appointments being scheduled.

At every appointment that Annalise has had, she asked if the doctor was going to look in her ear.  Ever since her horrible ordeal in November, she is scared to death of having anyone look in her ears, for fear that it is going to cause a lot of pain.

One of these appointments was with the gastroenterologist.  There we found that Annalise had lost a couple of ounces and Bryce had gained a couple of ounces.  She now weighs 30 pounds and he weighs just over 40.  I wasn't surprised that Annalise had lost a little bit since she was so sick last November and really didn't eat much for about 3 weeks.  I was actually very glad that she had not lost more considering I have recently stopped using the pediasure they have had her on for so long now.  We are really trying to feed her more of the diet that I give Bryce since that seems to be helping him so much.  She is still eating by mouth and loves the taste of all things sweet so it is a little more tricky than it is with Bryce, but getting rid of two cans of chemical sugar water a day should help some.

Dr. McOmber scheduled a swallow study for Annalise just to check and make sure that she is still not aspirating food when she eats.  It has been pretty routine for her, every 6 months, over the last couple of years just as a precaution since eating/drinking has become more difficult for her as she fatigues easily.  Her studies have all been normal and I haven't noticed any new difficulties for her, so I figured this one would be the same.  It wasn't quite.

Annalise did a great job.  She sat up in the chair and ate all the cherry flavored barium food and drink they gave her...even asking if she could take the rest of the cookie with her.  Gross!  Okay, whatever.  She enjoyed watching herself swallow on the x-ray screen.  It was very different than Bryce's ever were.  He is always scared to death of all of it and cries through the entire study.  I always dreaded them, so it was nice that Annalise seemed to thoroughly enjoy herself.  Anyway, luckily there were no signs of aspiration, but this time around they did see a fair amount of penetration going on, which is basically when food or liquid does go into the trachea but stays above the vocal cords and then eventually (hopefully) moves to the correct place.  We will see what the doctor has to say about all of that this coming week. 
 This is the marble wall at PCH Mesa Campus.  Annalise had fun trying to count all the marbles.  I asked her how many she thought were there and she said, "ummm, maybe 30 teen!"


As for Bryce, our neurologist is concerned about the number of apnea episodes that he has been having and is wondering if possibly he is having some reflux that may be causing them.  We talked this over with Dr. McOmber and he agreed that this could be a possibility.  He is going to do a procedure that will measure the amount of reflux that is occurring in Bryce during a 48 hour period.  Since he will need to put him under to do this and since we had an appointment scheduled the following week with the pulmonologist , Dr. M decided to wait until that appointment to see if Dr. Woodward needed to check anything that would require anesthesia. The fewer times he has to be put under, the better.  Dr. Woodward does not, so we should be hearing from Dr. M's office soon to set up that appointment.

The pulmonologist does however want to do another sleep study for Bryce to check on the amount of apnea episodes he has during the night, how long they last, what type they are, etc.  Dr. N was glad to hear that we will be doing that because as part of the sleep study they attach electrodes to Bryce's head that will help us get another look at any seizure activity that might be going on.  So it will be good to check that out again as well. 

Outside of appointments, we have had some fun.  Yesterday was Bryce's Birthday.  I can't believe he is 7 years old.  It was a really low key birthday this year, but it did include singing the birthday song and lighting the candles many, many times since those are his very favorite part of a birthday celebration! 


Happy Birthday my big boy!