His Eyes

Bryce may be non-verbal, but through his gorgeous brown eyes, he speaks volumes!

I've been thinking about writing this post for a little over a week.  I knew I wanted to share this experience with all of you, and yet it has been hard to get it down in writing.  Even tonight as I sit at the computer, the words aren't coming easily.  

I love my boy more than words can express.  A few years ago, my then 3 year old son Spencer, was throwing a fit over something and I said to him," Use your words.  What do you need?"  He looked up at me and through his tears he said, "words!"

Words are powerful!  Words...something that Bryce has not had for over 3 years now.  Because he does not have words, he has been labeled "mentally retarded" by the system and yet anyone who spends time with him soon learns that his mind is alive and active.  I have never heard him say "I love you" and yet through his eyes and his soul, he has spoken to me many times. 

Saturday, January 7th was one of those times.  It was the day that John was in the hospital and Bryce woke with croup.  Throughout the day he had many "non-breathing episodes" as we call them.  He has these when he is well also, but when he is sick, they come more often, last longer, and are way more scary!  They are intensified by his inability/lack of strength to cough and get rid of any mucus or phlegm that comes with common respiratory illnesses.  They are also harder for him to overcome when he is upset or afraid.

So, back to Saturday afternoon.  As Bryce began to cough and make a quiet sound, that I know all too well and can hear from across the room yet cannot even explain, I ran to him, picked him up in my arms, and got him into the best position to help him through what I knew was coming.  The cough assist machine, breathing equipment, and suction machine were all close by and soon would be used to help him clear his airway with hopes of keeping anything from being aspirated into his lungs and causing more problems.   Like so many times before, he began to gag, choke, and then struggle for breath as I held him and worked with him.  His heart was racing, as was mine as he looked up at me with those eyes that spoke so loudly to me.  His eyes were calling out for help, for peace, for breath.  There was fear in those eyes that looked up at me, begging for relief and trusting that I would help it come.  It is a look that I am sure will never, as long as I live, leave my memory.  

Although the color of his lips and face began to change as I looked into those pleading eyes, I was reminded that I must remain calm so that he could become calm and take that breath that would allow him to stay with us.  His eyes have spoken to me like this before, but for some reason, it really affected me this day.  

As he spoke to me with his eyes, I silently prayed and spoke quietly to him with my words reminding him to breathe, telling him that he could do it, and that everything would be okay.  Finally he took that breath and soon he was once again okay.

A few minutes later I sat holding him in our rocking chair.  As I held him in my arms, he looked up at me and again spoke to me with his eyes.  He thanked me!  He told me that he loved me and thanked me for helping him!  I snuggled him a little closer and told him with my words that I loved him too and how thankful I am that our Heavenly Father has allowed me to be his mom.  How lucky I am to be the one to care for him while he is on this earth and to experience his amazing spirit in a way that only a mother can.  

Breathe Baby, Breathe

It seems like I've said that a lot over the past week.  As we prepare to head into another weekend, I am praying that this one will be much more calm and uneventful than the last.  Annalise began running a fever last Thursday, she is finally getting over that and the cough/cold that has accompanied it.  Thursday night, John came home with what we thought was the stomach flu.  He was sick throughout the night, but was feeling a bit better Friday morning other than some pain in his stomach, so he kept the appointment and went to sign the papers to refinance our home.  As he was driving back from there, he began feeling very ill again.  He went into work, since that was close, and called me saying that he was going to have a co-worker take him to the hospital.  When he got to the hospital they found that he was dehydrated.  They then decided to do a CT scan just to make sure there was nothing else.  They found a bowel blockage and admitted him to the hospital.  I wasn't happy about him being so sick, but I was thrilled that it wasn't the stomach flu that would be running though the family!  He ended up being in the hospital until Monday.  Luckily he did not have to have surgery!

So John was admitted to the hospital Friday night and about midnight Bryce's breathing seemed really strange to me, but not terribly alarming.  About 5am, he woke again with this weird sounding breathing and then began with croup.  I did all the usual things to get the croup under control (in the mean time, all the boys had heard him struggling and woken up).  As we were outside and his breathing was a little less labored, I told him that it was Daddy's turn to be in the hospital and that he couldn't join him!  :)  Luckily he listened, and soon was breathing a bit better.  We spent the weekend and the last couple of days doing breathing treatments and major suctioning, trying to keep his breathing stable and his lungs clear.  He has given me a few scares, but now seems to be on the mend.  We did end up at the doctor's office yesterday because he began running a fever and seemed very uncomfortable.  Ends up he has an ear infection.  Luckily his lungs sound clear, so hopefully we can get rid of the ear infection and he will be back to the happy, healthy Bryce we all know and love!  He is really looking forward to going back to school.  He gets bored with just mom and Annalise all day!

Another weird thing that Bryce has been going through is this weird rash.  It is totally unrelated (I think) to the croup.  It began just over 3 weeks ago.  Here is a picture of the first spot. 

Looks like ring worm doesn't it?  

Then this one showed up on his belly.  

Bryce had a GI appointment the day the second one showed up and the GI also thought that it looked like ring worm and told us to just use the over the counter anti-fungal cream which we continued doing for another week and a half.  In the meantime, this rash began to spread all over his body,

so I decided to take him to the pediatrician since I didn't think ring worm spread like that.  She looked at it and first thought ring worm, but when I showed her the whole rash, she confirmed that ring worm does not spread like that.  She then looked for a while, put her hands up and said, "I really don't know what that is, you need to take him to a dermatologist."  So I made an appointment, but they can't see him until next week.

So, we weren't really sure what was going on, but when my Mom was talking to my younger sister, Kim said that it sounded just like what she had a couple of years ago.  I sent these pictures to Kim and talked with her a bit and she said hers looked just like that.  She couldn't remember what it was called, so she called her dermatologist and asked her.  PITYRIASIS ROSEA!  I looked it up on the internet and sure enough that is exactly what it is!  Thanks Dr. Kim!  When I took Bryce in for his ears, the doctor we saw that day confirmed it.  Luckily it is not contagious.  It usually affects people from the ages of 10-35, so he has it a little young.  The rash usually lasts 6-8 weeks, but can last for months.  He doesn't seem bothered by it, so I guess we'll just wait for it to disappear.  Weird!

They keep me on my toes, but aren't they just adorable?  Keepers for sure!

December Updates

We didn't see too many doctors in December, but I thought I would fill you in on the few that we did have.  Bryce gained back the weight that he had lost, so we do not have to alter his feeds this time, which is always nice.  We go back in two months for another weight check.

Bryce and Annalise both had eye appointments and found that both of them are slightly near sided.  This isn't a huge surprise considering both parents spent many years in glasses!  Annalise also has an astigmatism and is just slightly near sided.  They said that nothing needs to be done right away, but we will need to watch  that because she will most likely need glasses in the future.

Bryce's eyesight is a little worse.  The opthamologist said that if he was needing to read a chalk board or something, then they would give him glasses now, but we are going to hold off since he doesn't really need to see far for now...oh, and the fact that he hates having anything on or around his face!  The doctor said to just put him up close to the TV  :)  I have to admit, John and I both thought the doctor was a little odd, but that's okay.

The good news though is that there is no sign of any of the eye issues that often come from the  Leukodystrophies in either of our children!  So, although the near sidedness reminds me that these little ones aren't immune from the normal, everyday issues, their overall eye sight is still good!

Today I got an email from the neurologist letting me know that the doctor here in the states also did not find any deletions.  Dr. Narayanan has officially diagnosed them with Aicardi-Goutieres Syndrome (AGS5) because he strongly believes that's what it is. However, he did say today that he obviously has more work to do.  I'll keep you posted!

Oh, Annalise also got some new AFO's that she is really not liking.  The tightness and spasticity in her legs has gotten worse so these will hopefully help stretch her and keep her off her toes a bit.  Unfortunately, she seems to be in pain a good part of the time now, so she is now on pain meds a couple times a day.  I'm sure she will be starting baclofen soon.

I hope everyone had a wonderful Christmas and Holiday season.  Our hope for 2012 is a true, sure diagnosis and a cure...that isn't too much to ask for, right?!

One Year

One year ago today our lives shifted again as Annalise was diagnosed with Unspecified Leukodystrophy.  Although Annalise has lost many of her previously acquired skills over the year, I am so thankful that she is still able to sing!

Today this year has been a much better day.  We are enjoying a day of respite at the Ryan House.  Our good friends, the Hauer family came by today and played with us for a while here.  It was so great to see them again!  They are such amazing people!

11 Things I've Learned Since Becoming a Special Needs Parent

I came across this post early this morning after being up multiple times throughout the night with our two special children.  These are all feelings I feel or have felt throughout the last 3 years.  She really hit the nail on the head with this one!  There is so much guilt, love, anger, frustration, uncertainty, and incredible joy that I feel throughout our journey.  I'm glad I am not the only one who feels this way and that someone had the ability to share.  Excellent post!

Roll With the Punches!

Happy Veteran's Day!  I am so thankful today and everyday for those who give so much so that we can live the way that we do and enjoy the freedoms that we have.

I'm so sorry that it has been so long since I have posted an update.  It has not been for lack of desire, but rather lack of time!  Here are just a few of the things that have been happening here the past couple of weeks.

*Fall break, which was great!  I love having my kids home from school.
*John had multiple work trips throughout the month.
*Bryce got strep throat
*Bryce and Annalise had croup
*Sick respite workers.
*All the kids had dentist appointments...no cavities...hooray!
*Bryce got a new stander (I'll have to add pictures once I get some)
*Orthopedic appointment for Bryce where we found out his right hip is at the same place it was before and    the left hip has actually improved!  That was great news.
*IEP meeting to discuss where Bryce is at now and our plans for Kindergarten.  These are always hard.  It's not that they tell me anything I don't already know, but it is always tough to hear that he is still obviously regressing.  I did find out he has some definite favorites out of his teachers and aides in the classroom!
*Had a good cry that afternoon on the way to Phoenix for Annalise's swallow study.  No aspiration was detected!
*Appointments with GI and nutritionists for Bryce and Annalise and found that both of them have lost weight...not the direction they are suppose to be going!  Dr. McOmber enjoyed giving me a bad time about green smoothies, but was pleased that I have been able to get rid of the Miralax, by giving some of this to Bryce through his tube!
*Neurology appointment for the kids.  Nothing new.  Multiple doctors still looking for a deletion or something.
*Annalise got a new wheelchair/stroller.  I'll have to show pictures of this later as well as pictures of Bryce's new hand splints.
*Multiple appointments for the older boys including dermatologist for a growth next to Jacob's eye, developmental pediatrician, and counseling.
*Sold the Big Red Fire Truck
*Rear air in the bus stopped working...back to the shop.
*School book fair, art fair, and reward trip.
*90 day reviews
*Therapies, therapies, and more therapies
*Then just as I thought I had a day without anything scheduled, I got a call from my oldest son's school and was told that he had just fallen while playing a jump rope game at recess.

He ended up having broken both bones in his wrist.
*Change of weather which feels great, but has brought on muscle pain, tears, and restless nights for both Bryce and Annalise. (which leads to a sleep deprived, grumpy mom)
*Halloween trip to Ryan House...super fun.  I just love that place.  I got to meet Ryan's parents who are super great people.

(This was the best picture I could get of her with her costume on.)

*And trunk or treat at the church.  She would not even wear her costume that night.  She sure had fun racing around the parking lot in her walker though.  At one point when I said let's go say trick or treat and get you some candy, she replied with, "no trick-or-treat, I walking!"  So we just walked most of the night.  She was so happy.  It made me smile!  The picture above was the only one I got of the night. Sorry boys!

So, that takes us through the end of October and into November.   I also received news last night that a friend and former room mate passed away leaving a wonderful husband (who is a long time friend of mine) and six young children.  My heart aches for Tom and his family and I pray that they will be comforted.

Tomorrow morning Jacob, William, and I have Cub Scout Day Camp and then we are heading to William's to ride the Polar Express.  We are really looking forward to a little trip away!

I have been asked multiple times throughout these crazy weeks how I do it.  And I guess I'm just like everyone else.  We all just have to roll with the punches that are thrown our way!

Random Photos of Cute Kids!

Life has been insane the past couple of weeks.  In fact, I got on here to blog today and found this post that I started almost a month ago and never finished.  It is just a bunch of random photos of Annalise and Bryce that I have taken over the past few months.  Soon, I will get on and catch you up on all that is happening, but for now...enjoy some random pictures of two of the cutest kids around!

Bryce's smiles just beg for a picture to be taken. 

Before Annalise got her own little walker, we would help her use Bryce's gait trainer.  It is a little too heavy for her to use alone, so her new one is perfect for her now, but this was fun while she waited.

It is often very hard to get a good, smiling picture of Annalise so even though it is blurry, I love this picture.  This is when we were in the hospital waiting to get her lumbar puncture.  We were playing with bubbles.

I came home one day and found Annalise with these beautiful braids in her hair.  Her physical therapist, Tess, had braided her hair while she was stretching her.  It was so cute.  

Annalise decided that she wanted to go swimming and decided to put her own swimming suit on.  This is how William found her.

This was at the Ryan House.  I set this on her tray and she started to say a prayer.

Soon she opened her arms and said The End!

Another cute smile

Here are Bryce and Annalise wearing some Leukodystrophy Awareness shirts I had made for them.  Another LD mom that I have met on facebook designed these shirts.  You can find a link to her awareness store here  

She may not be able to get around too well, but that doesn't mean that Annalise won't find a way to get to what she wants.  Here she is enjoying a cup of peanut butter that was left open on the floor during conference weekend.

Morning hair!

More pictures of the kids sporting their LD shirts.

Annalise is a two year old through and through.  During her therapies we sometimes have to get creative.  Her PT, Tess, discovered that if she puts the socks on Anna's hands first, then Anna is much more willing to let her put them and her braces on her feet before working.  Tess is amazing with both of our little ones!

I think she is doing Patty Cake here.

Here is the one and only time (so far) that I have been able to braid Annalise's hair.  It is very rare that she sits still long enough to have much done with her hair.  I just love her hair though.  It has gotten so long and is so pretty.

These are a few shots that I got one day after picking Bryce up from the bus.  I was trying to get one  good shot of both of them looking at me, but as you will see, it never quite happened, although they are cute anyway!

This is Bryce's annoyed face.  He is happy most of the time, but he will definitely let you know when he is done!