23%

It has been a while since I posted...and for us that usually means no news is good news!!!  We have all had a really good and busy summer.  Everyone has been healthy, thank goodness!!!

This year was the second summer that the girls attended a day camp for deaf children, their siblings, and children of deaf adults.  The camp is 8 weeks long and is at a local deaf church.  I am still amazed at how much my girls grow during their summers there.  Both of them are really starting to sign well- Amelia is using so much more language.  Hannah is also doing an amazing job.  Last night was Parent Night.  The kids put on a sweet show, and it was great!!!

The older kids at camp make a movie every year.  This year it was about a deaf boy growing up alone in a hearing world.  What an impact it had on me!!!  It showed his perspective on how things were at school, home, sports, and socially. It is very isolating and lonely for many of these children.  They can't communicate with anyone!!!!

It absolutely breaks my heart to find out that only 23% of children that sign, have families that also learn to sign!!!!  I am determined that THAT WILL NOT BE US!!!!  We WILL be the 23% that learns to communicate.  We have been taking sign language classes for about 3 years, and it is hard.  It is hard to remember, it is not always convenient to have class, and it is hard to get into the habit of signing all the time.  But, now I know better....I know that Amelia has been excluded from family conversations....I know that she is alone in a hearing world.  But, now that I know better.... at least she will not be alone in her hearing home!!!!

On Hold!!!

So, here we are at the hospital again.  We had two days at home before we came back.  Amelia continued to have fever after we came home and her blood count was low, so she received a blood transfusion last night.  We have been in the ER for more than 24 hours waiting on a room.  We still do not know what the plan is going to be for Amelia or what is exactly going on with her.  Lots of tests have been run, but we still don't have any answers yet.  So, here we sit and wait....and wait... and wait some more.

There is so much about having a sick child that is challenging- the anxiety over what is going on with your child, having to put so much trust in other people - often strangers to make sure that your child gets well, the sleep deprivation, the changes in your family dynamics,  the waiting, etc...

But, one of the things that is so hard when you spend day after day in the hospital is the fact that you feel like your life has been placed on hold.  Life continues to happen everywhere, and I just feel stuck.  The days are long, and the sleepless nights are even longer.  But, I just have to do the best I can to keep things going and focus on taking care of Amelia and getting her well.  She does make it easy with her sweet and joyful spirit.  Even when she feels terrible, she can almost always manage to give at least a little smile.  Over the past 27 days, we have been in the hospital for 17 of those days and I am not even sure how long they anticipate her having to be here this time around.

I feel horrible for not being able to be there for Hannah and I feel like I have missed so much with her.  This is her last week of 1st grade and I am not able to be there with her.  Hannah is amazingly grounded and and self confident, so I am sure that she is fine.  But, it hurts this momma's heart to be torn between my two girls right now.  I want to be there for both of them, together!!!

I am so ready for Amelia to be well and back to her silly old self!!! And selfishly I am ready to get life back to our version of "normal"!!!

Another Bump in the Road...

So, I thought that I would do a much better job at updating my blog.  But, it seems like before I turned around 2 months had passed.  We have just had a really crazy couple of months.  I started a new job and continued to work my regular schedule at the hospital.  I have now cut back at the hospital, so my schedule should start easing up...at least a little bit.  Spring is also just a really busy time of year for us- end of the school year combined with the girls birthday, getting ready for summer camp, trying to figure out a vacation, etc...  I am sure most families feel the same way we do this time of year.

So, to add on to our already crazy spring- Amelia has been hospitalized twice.  The first time was over Easter weekend because she had a fever of 103 and pus draining from her VP shunt.  After 48 hours of IV antibiotics, we were sent home with a topical ointment and oral antibiotics and to follow up with her neurosurgeon in 1 week.  Throughout the next week she did well- no fever, went back to school, etc...  At our follow up with the neurosurgeon he determined that her shunt could not be saved.  She was admitted 2 days later, on Wednesday, for surgery to take her shunt out and place n external shunt and the plan was to put a new shunt in on Friday- we would be home on Saturday and have 2 weeks of IV antibiotics at home.

Well, in typical Amelia fashion, things did not go as planned.  After her surgery on Wednesday the doctors told us that her spinal fluid from the week before had late growth of bacteria.  So our plan significantly changed.  Her shunt would now have to be externalized for 7 days before they felt it would be safe to put a new shunt in.  So, here we sit!!!  She is scheduled to have surgery tomorrow to place the new shunt and then we should be able to go home on Friday and continue with another week of IV antibiotics at home.

This has been our longest continuous hospitalization since she came home from the NICU.  It has been a really long week (it will be 10 days by the time we go home).  I am so ready to go home...I miss Steven and Hannah, my bed, uninterrupted sleep, having space, my house, my own routine, Zumba, etc...  For a person that is a homebody, 10 days is way too long to be away- regardless of where you are, much less stuck in a hospital room!!!

I am not one that usually likes to rush the days away, but right now I just want Friday to hurry up and get here!!!

The Total Package!!!

It's not very often that Hannah gets a post all about her, but yesterday was one of those days that I was so proud.  I volunteer in her class as a "reading mom" every Monday.  I do this for her class only.  Amelia gets so much extra time and attention for appointments and requires extra time at home just for her daily care and homework, that this is something special that I can do just for Hannah.  Anyway, I enjoy the time with Hannah and her friends (plus, one of the perks is that the teacher gives little insights into how Hannah is doing).

I will just start into this with a little description of Hannah.  She is healthy, bright, spunky, and STRONG WILLED.  She also has a very sweet and sensitive side at times- other times she shows no mercy.  She loves to talk and always likes to have "the last word."  She can be really hard to parent (in fact, much harder to parent than Amelia).  It is not that infrequent that Steven and I will just look at each other and wonder where we went wrong with Hannah (yes, she can be THAT difficult).  So, when moments like yesterday come along, it helps us to feel like we are doing something right.

So, yesterday Hannah's teacher told me that she thinks that Hannah is one of the smartest kids in the class.  She is an excellent reader, has the maturity to understand complex concepts, and has good social skills.  She said that Hannah is "the total package."  WOW!!! 

That definitely makes us so proud of Hannah.  To know that even through all of the difficult times at home, that she is able to shine at school.  We just hope and pray that she continues to do well and that we are able to parent her in a way that will continue to build her into an amazing girl. 

This Rarely Happens!!!!

So, I will take you all back about six months to share another one of our crazy stories.  Yes, weird things just seem to happen to us.  So, every 6 months Amelia has routine check-ups at Spina Bifida clinic.  I just can't express how frustrating clinic days are!!!  They typically consist of getting  a kidney ultrasound, getting x-rays of her spine, seeing the urologist, orthopedic surgeon, neurosurgeon (once a year), clinic coordinator, and sometimes we toss in a physical therapist, occupational therapist, nutritionist, and a therapy dog.  Plus, getting vital signs, height, weight, etc...  Then you add in all of the WAITING...  It is a LONG, tiring, frustrating day.  Most of the time I leave with more questions than I had to begin with.

Anyway, six months ago we went in for our routine check.  Everything was going well-got the x-rays, got the ultrasound, got to see the urologist early, and then we headed up 2 floors to clinic...and we got there a few minutes later than I had hoped (because we were seeing the urologist early).  I knew this had the potential for a long wait, and I was right.  We waited in the waiting room for at least 2 hours (minus the 20 minutes we took to go grab lunch during our wait).  During our wait, I saw the orthopedic surgeon leaving clinic- that is never a good sign!!! 

Finally we get called back to a room for more waiting.  At this point we are only waiting to see the orthopedic surgeon.  Eventually an orthopedic resident comes in the room and tells me that her regular doctor had to leave, so she would talk to me about Amelia.  In my mind I am thinking "seriously, you have never seen my child and think that you are going to be able to offer me some insight on the progression of the curve of her kyphosis, potential surgery on the curve, and what to do about the skin breakdown on her back."  So, I play nice and let her do her thing, and then as she is about to leave she says, "by the way, the radiologist called and said that there appears to be a problem with her VA shunt.  I think the neurosurgeons have left for the day, so they will get in touch with you tomorrow."  At that point my heart sank!!!  We have been down this shunt "problem" road before (8 times to be exact) and know that it usually means surgery or hospitalization.

So, for about the next 20 hours I am a basket case worrying about what is going on.  Her neurosurgeon finally calls me, and tells me something that I had never expected to hear.  The tip of the tubing of her VA shunt has broken off just below her clavicle and appears to be in her heart (excuse me, did he just say there is tubing floating around in my child's heart).  He was not exactly sure of how we would proceed, but was going to make some phone calls and get back in touch with me.  In the mean time we went to parent/teacher conferences (and could not pay one bit of attention).  About 4 hours later I got a call from one of the pediatric cardiologists.  He told me that we would need to go ahead and get that tubing out, which he could do with a cardiac cathterization.  He was available to do it in 2 days.  WHAT!!!! 

So, 2 days later Amelia breezed through the cardiac cath.  What was so weird to us, was that the "tip" of tubing was at least 3 inches long.  Also, to sign a consent to have a foreign body removed from your child's heart just sounds so wrong.

The day after the cardiac cath, Amelia's neurosurgeon called to check on her.  At that point in time we decided that it would be in Amelia's best interest to just wait and see if her shunt was going to fail or not.  Despite the tubing being broken, it could still drain the extra fluid from her brain.  Well, we were not so lucky- about 4 weeks later she started to show some subtle symptoms for shunt failure.  We went in for several tests, which confirmed my concerns.  So, in November she had her 9th shunt surgery.  She had the tip of the shunt placed back into her abdomen (it is a VP shunt again).  She did have to have a laproscopy with the shunt revision to find a good spot for the shunt to go, just because she has had so many abdominal surgeries and so much scar tissue.  That was a tougher surgery for her.  She had a lot of discomfort and was just wiped out for a few weeks.

Six weeks later we went for our follow up with her neurosurgeon.  He was pleased with her progress and said to just see him again in a year as long as everything is going well.  But, I could not leave without knowing how many time he had seen a VA shunt break like that. Keep in mind, that he is very experienced, been practicing for 25-30 years.  His response was, "It can happen, but I have never seen it before."  I tell him, "of course it's going to happen to us then."  His response was, "some people get all of the luck."

So, needless to say Fall was a bit stressful for us.  But, I am happy to say that Amelia is doing great right now.  We do have spina bifida clinic in a few weeks, and I am hoping that it is boring and uneventful. 

All Grown Up (at least for today)

Well, today was just one of those days when you all of the sudden realize that your babies are growing up- and too fast at that.  The girls were out of school today, so we spent most of the day just hanging around the house.  This afternoon, Amelia had PT first and then speech therapy.  I have always gone into Amelia's sessions with her for PT, and usually go in with her for speech.  Today marks the first day that Amelia "kicked me out" of both!!! 

I was talking to another mom in the waiting room when Amelia's PT came out to get her, so she took Amelia on back.  I walked around and found the room they were in, and Amelia was doing great work.  Then, Amelia gave me "the look."  You know, the one that basically says "what in the world are you doing here, because I can handle this."  So, I asked Amelia if she wanted me to stay or go.  Of course, she told me to go!!!  She gave me a hug and kiss, and away I went to the waiting room.  I know she did well, but it did worry me that her PT does not know much sign language.  But they managed just fine.

Fast forward about 30 minutes to speech, and it was the exact same story- just a different time, place, and therapist.  So, twice in one day she decided that she didn't need me with her.  Don't get me wrong, I am so proud of how independent and confident she is becoming.  But, it does hurt this mama's heart just a little- knowing that they are growing up so fast!!!

"She's not REALLY deaf"

So, I had a conversation with someone about Amelia.  During this conversation, I mention that Amelia is deaf, but this person told me "well, she's not really deaf...she has cochlear implants."  So, I thought I would share how I feel about Amelia's deafness and what it means to me.

First of all, she IS really deaf!!!  There are many levels of hearing loss- mild, moderate, severe, and profound.  My girl is profoundly deaf.  Basically what this means is that she might be able to hear a chainsaw at close range without any amplification (I personally doubt it).  When her cochlear implants are off, she basically hears nothing- I can scream her name at the top of my lungs, but she will not turn her head.  Now if I add stomping or jumping, waving my arms, turning the lights off and on (you get the picture).. then she will look in my direction. 

Yes, she does have bilateral cochlear implants (CI), but that did not take her deafness away by any means.  She received her first implant at 21 months and the second one 6 months ago, at 7 years old.  You see, we were told in the beginning (before her first CI) to not expect much from Amelia's CI- that she might get environmental sounds, but it was very unlikely that she would hear speech sounds because of her abnormal ear anatomy.  I am happy to report that she is getting so much more.  She detects speech sounds at almost normal hearing levels (20-25 dB).  Normal hearing is 20 dB.  But, her speech discrimination is only 30-50%.  Basically what this means is that she can hear that someone is talking, but can't understand what they are saying most of the time.  So, because of that she has not developed good speech.  She has some spoken words, but not enough.  We tried an oral deaf education program for 3 years, and with such little progress we decided that adding sign language would be our best option.  She was 4 years old at that point- with minimal language (maybe 100 words that were unintelligible).  We currently do total communication, which basically means that we will communicate with her anyway that we can-spoken, sign, pictures, etc...

So, maybe you wonder what it is like or how it feels to have a deaf child.  Well, when we first found out she was deaf, I was devastated.  Selfishly, I remember thinking that she would never hear my voice or how beautiful her name is.  I also remember feeling guilty for being sad that she was deaf.  I told myself that I should just be grateful that she is alive (I really wish that I would have allowed myself to really grieve her hearing loss at that time).  We had lots of support for Amelia, but there was no emotional support for us.  When she was a baby, you never really knew that she was deaf, but as the girls got older the reality of it set in (especially since Hannah was an early talker).

I have certainly come a long way, but I would lie if I said that it never made me sad that she is deaf.  I think that is just part of the daily grind that goes with having a special needs child.  Dealing with all of the issues that go along with her hearing loss is harder than anything else that we do-basically because it touches every part of our day.  You know that communication is important, but imagine not being able to communicate with your child.  It horrifies me.  What makes it worse is that about 80% of parents with deaf children that sign, never learn sign language.  I REFUSE to be one of those statistics!!!  We are studying American Sign Language (ASL), but it is so hard to learn.  It is definitely not English.  The days get hard...Amelia screams a lot, homework can be a bear, we all get frustrated when she wants something that she can't figure out how to tell us, etc... You get the idea.

On the other side, there is so much about Amelia that makes her who she is because she is deaf.  She is so animated and expressive and has personality plus!!!  She is so funny.  She loves to sing (of course the rest of us have no clue what she is singing).  She is amazingly smart.  She is so visual and picks up on little details that the rest of us may miss.  We have been told that "Amelia is deaf with a capital 'D'", "she is a true deaf", and "that her deafness is just in her."  And all of that makes her the little girl that I LOVE!!!!

Yes, many people that have CIs have perfect spoken language and you would never know that they were deaf, but that is not my child.  There is no technology that can take her deafness away from her, and I am grateful for that.  My child is DEAF and I love her for who she is and am so proud to be her mom!!!!

Amelia singing/signing "Jesus Loves Me".

This "NEVER" Happens!!!! (#1)

Well, if it never happens, then why does it seem to happen to us!!!! 

As Amelia is getting bigger, it is just getting harder to help her with getting around.  Yes, I still carry her a lot- but she is heavy!!!  Despite only being about 35 pounds, the limited way that she can support herself make her really heavy.  I am trying to encourage her to crawl around the house more and also use her wheelchair more at home.  One of the obstacles with the chair is stairs, of course.  Well, when we come across stairs without a ramp available, we turn her around and kind of "bump" her up or down the stairs.  This actually works pretty well, but the chair with her in it is about 77 pounds (not to mention we almost always have a loaded backpack on the chair).  When there are more than a few steps, I am always a little nervous about falling or dropping her.  Up until Sunday night, this had never happened.

So, Sunday night we went to our neighbor's house to watch the Superbowl and eat lots of food.  We had a blast, as usual.  On a side note, they have a crazy dog that loves to play with all the kids.  As he was chasing the girls around, he grabbed Hannah's dress and ripped the skirt off in the back (we were all laughing hysterically).  After the dress incident, the girls were really wound up so we knew it was time to head home.  We head out their front door and I have Amelia in her wheelchair and a small bag on my shoulder.  They have maybe 6 steps to go down from their front porch.  Steven was already on the sidewalk with Hannah and our crock-pot full of chili.  As we start going down, everything is fine, but then with about 2 steps to go me and the chair (with Amelia in it) start to fall.  The chair turned to it's right side as it fell down the two steps.  I landed on my right knee-it got bruised and scraped.  It was like it all happened in slow motion.  Steven ran over and grabbed the chair up as fast as he could.  Amelia was absolutely terrified!!!!  Amazingly, she did not even have one scratch or bruise.  She did cry for 30 minutes nonstop afterwards.  As we all start to look more closely at the wheelchair, we realize that one of the bolts that holds the wheel assembly in place was broken into 2 pieces.  So, her wheelchair was unusable at that point.

Yesterday, we took the chair to get it repaired and the vendor told me that he had NEVER seen a bolt break like that (of course not).  After looking at the chair, he noticed that the top bolt of that wheel assembly was loose, which probably caused the lower bolt to break with the pressure from going down the stairs.  So, he thinks the bolt broke, which affected the balance of the chair, which then caused us to fall!!! 

I have not been happy with this chair- ever, so I really can't wait until her new chair comes.  We are in the process of waiting on insurance approval for her new chair (she is getting a Zippie Zone).  The new chair will probably only weigh about 20 pounds (versus her current chair at 42 pounds).  So now, after the bolt breaking fall- the new chair can't get here fast enough!!!

Since we seem to have had a lot of things that "never happen", happen to us lately I will share a few of those stories over the next few posts. 

WOW...2 YEARS!!!!

Wow!!!  I knew it had been a long time since I had posted, but 2 YEARS!!!!  Anyway, I am going to try to post more frequently and keep things going this time.  I will try give a short and sweet version of the past 2 years.  The girls started and finished kindergarten and are now in first grade.  They LOVE school- Hannah loves to learn and is a social bug.  Amelia- well she likes to learn sometimes, but would prefer just playing with her friends.  We have been to Disneyworld, New York City, and the beach.  Amelia had 4 procedures/surgeries (well 5 if you count what we refer to as the pseudosurgery-that full story will be for another post).  She had a kidney biopsy, cochlear implant (second one), cardiac cathterization, and shunt revision.  The four of us are becoming much more comfortable with using American Sign Language.  The girls got their ears pierced.  Hannah has lost 6 teeth and Amelia has lost 3.  Amelia got a mobile stander and an Amtryke bicycle.  We got a new dog, Josh, and 4 months later we lost our old dog, Jessica.   We are still very busy, and pretty overwhelmed most days.  As always though...God is good and we are very blessed!!!